NHS Continuing Healthcare – is it worth the fight?

NHS Continuing Healthcare – is it worth the fight?

Care To Be Different asks whether NHS Continuing Healthcare is it still worth the fight

In May last year I wrote an article about the difficulties families continually face securing NHS Continuing Healthcare funding.

I also highlighted the palpable anger and despair families feel at the hands of a care system that often seems to care very little. In that article are also some tips and strategies to help you with NHS Continuing Healthcare.

It will come as no surprise to many people that the situation hasn’t got any better. Many would argue that it’s now even worse.

That said, however, we still hear every week from families who have succeeded in getting NHS Continuing Healthcare funding. Almost universally, the feedback these families give is this:

  • It’s vital to be well-informed in advance of any Continuing Healthcare funding assessment.
  • It’s vital to be one step ahead of Continuing Healthcare assessors in terms of knowing how assessments should be conducted, and knowing what’s right and what’s not.

It is the oldest generation who have paid into the NHS system for the longest. They did that with the promise that the NHS would support them with healthcare and nursing care should they need it. That was the deal.

And so when politicians and others say that ‘we just can’t afford it now’ this surely misses the point. Older people who need healthcare and nursing care now have already paid for it. What’s more, it is NHS care that is clearly prescribed in law.

Sadly families often find themselves fighting tooth and nail to secure this state healthcare and nursing care.

And so the question is…

NHS Continuing Healthcare – is it still worth the fight?

As I mentioned in my previous article, the NHS Continuing Healthcare situation got noticeably worse after the NHS ‘reforms’ of 2013. In addition, the abject failure by successive UK governments to properly address the care funding system in England has led to a system that now seems to be on its knees. It is the most vulnerable people (and yes – those are the people who have paid in the longest) who are now being asked to pay all over again when assessors deny Continuing Healthcare funding.

It’s difficult to predict the future, but given the massive costs this current government has now committed itself to in relation to Brexit, the picture is hardly rosy for healthcare funding in general across the NHS – not to mention social care.

So what’s the point of my article?

It’s three-fold:

1) I want to reinforce strongly that people are still securing NHS Continuing Healthcare funding – every week. The funding is still there. Nothing has changed in the way it’s assessed. The law has not changed either – and the Coughlan case still stands.

2) The best chance you have of also securing the funding is to know the Continuing Healthcare guidelines and eligibity criteria inside out. Make sure you also understand the strategies you need to adopt at assessments and appeals. The information on this website will help you.

3) Be vocal about NHS Continuing Healthcare and the ongoing attempts by the NHS to deny people what they are legally entitled to. Keep going with your calls and emails and letters and complaints to your Clinical Commissioning Group (CCG) and to other relevant bodies. Make your case public through the press if you feel comfortable doing that. Read some of the tactics you could adopt if you’re at your wit’s end.

As well as those tips, consider these as well:

  • In any Continuing Healthcare assessment, make sure YOU run the meeting. Don’t be railroaded into agreeing with whatever the assessors say. If they are rushing through things, make it clear you expect every relevant point to be properly dealt with. Tell them you will be taking further action against them for any breach of the Continuing Healthcare guidelines and/or the law and/or any breach in their own codes of conduct (see next point).
  • Make sure your MP knows what is going on. Some still don’t seem to understand how care fees are supposed to work! Some are proactive, others sadly are not, but it still may be worth approaching them.
  • Sign every relevant petition you can – for example on the parliament.uk website or on other petitioning sites, such as 38 Degrees. Alternatively, start your own.
  • Write to the press if you feel comfortable doing that. Make your feelings known and let people know what’s going on.
  • Write to the Head of Adult Care at your local authority (LA) and ask whether he/she realises how much the NHS is illegally passing the financial cost of care to the LA. LAs are cash-strapped – and so clawing back funds from the NHS seems an obvious way for them to preserve at least some of their budget.
  • If your social worker does not seem to understand NHS Continuing Healthcare, educate them about how Continuing Healthcare is supposed to work. Many social workers don’t seem to know that care funding can be entirely an NHS responsibility. As a result many seem to simply agree with NHS assessors when they’re told ‘it’s a social care matter’. And yet social workers have a duty under the Care Act to refer people for Continuing Healthcare assessments.
  • Be persistent – always.

It’s not easy, I know. Indeed, it can be exhausting. Four long years fighting for my own parents taught me that. Determination and a refusal to be bullied by those in the NHS Continuing Healthcare system is vital.

But most of all, hold on the knowledge that – despite the difficulties – people are still securing NHS Continuing Healthcare funding, and some families are even successful within just a few weeks of starting the process.

Read as much as you can. Browse the many articles and comments on this website, including these.

28 links to help you with NHS Continuing Healthcare

How to get started with NHS Continuing Healthcare

More articles about NHS Continuing Healthcare

NHS Continuing Healthcare FAQs


  1. Linda N 1 year ago

    Thanks Jenny. Exactly my concerns too re shared equipment (recliner chair). Definitely not hygienic and no I’m sure the clients would not be expected to share the same bed!

    I had an email from the manager at the nursing home inviting me to make an appointment to meet with the nurse assigned to my relative to look through his care plan! Strange that the manager (via the Nurse) refused my verbal request last week!

    Thanks to everyone on this forum who has shared their experiences and those offering advice and support. Its such a comfort to know you’re not alone in this ‘fight!’

  2. Linda N 1 year ago

    Yet another stumbling block I didn’t anticipate….visited the nursing home to ask to see the ABC charts and they refused my request! I’ve emailed the manager to ask why I’ve been refused access to my relative’s notes as she wasn’t available to speak with during my visit.

    Is there any legislation on this issue or is it up to each individual nursing home to have their own policy in place? I’ve tried searching the Internet for info but the results are inconsistent.

    I haven’t seen or signed a contract with the home as although my relative funds himself his placement was organised through Social Services at the Local Authority.

    Still waiting for an eligibility decision on his NHS Continuing Healthcare funding, despite a letter from the CCG stating that the assessment was ready to be forwarded to me for my comments to be added, on 12th December 2017.

    • Glynis Evans 1 year ago

      Linda – you can ask for copies of your relatives information as part of a Subject Access Request. This link should help https://ico.org.uk/for-the-public/personal-information/

      • Linda N 1 year ago

        Thank you very much Glynis. Very useful info and letter templates too!

    • Jenny 1 year ago

      Glynis is correct. A Subject Access Request should do it, although if you have Power of Attorney for Health and Welfare I’d also say you need to see the records to ensure your relative is being treated in accordance with their wishes. Too many care home staff , GPs and Nurses seem to assume their decisions “Top Trump” either the patient’s or the Attorney’s.
      Knowledge of The Mental Capacity Act seems scant at best.

      • Linda N 1 year ago

        Thanks Jenny. Unfortunately I don’t have an LPA for Health & Welfare only Finance & Property. I didn’t actually foresee all these issues with his health and care.

        I think I would have felt more confident in challenging the nursing home had I had the relevant LPA in place.

        Unbelievably he is still sleeping in a recliner chair each night and when I visited on Thursday another resident was sitting/sleeping in the chair during the day! So the one and only recliner chair is not exclusive to my relative!!

        • Glynis Evans 1 year ago

          Hello Jenny – an LPA for Finances & property is fine if you are fighting for NHS Continuing Healthcare funding as you are using it to protect your loved ones finances, so it will be valid in these circumstances. The Decision Support Tool is not only about funding but should also look at your relatives care needs & you should bring that up as part of the overall assessment. Good luck

          • Jenny 1 year ago

            Good point Glynis, I totally agree, and hope that helps Linda. A further point to be made about shared equipment (recliner chair) is surely one of hygiene? No one would expect clients to share beds. My relative was at some point sharing hoisting equipment with at least on other resident. This was pointed out to be a possible source of cross infection to all parties as at least one user was doubly incontinent and the hoist sling was in intimate contact.

  3. Glynis Evans 1 year ago

    I totally agree what you are saying about the forms Jenny. The nurse has filled in our relatives forms saying all skin areas are intact, no pressure ulcers etc. Yet we have photographic evidence to the contrary. They systematically filled in forms saying she was being weighed, yet no figures were available. We found that they were not weighing her as it is too much of a risk to move her. We had to insist on upper arm circumference measurements & this has proved that she is at great risk of malnutrition. We have had to insist on forticreme supplements (which have to be overseen by a nurse) & special feeding techniques due to Dysphagia. We live 250 miles away, so we have to rely on carers & nurses to carry out their daily regime properly, but they just seem to fill out the forms as a matter of course – even if the information is incorrect…..

  4. Jennie 1 year ago

    Just one further note to Jenny’s comment that nonsensical forms or not , they all add to intensity as carers have to spend time to complete them.We have countless care plans , assessments etc for this and that but are using them to show how intensive the care is for our relative.For instance on the drugs domain, all prescribed medications have to be given by a nurse, checked, ordered and exact times given etc recorded, this should all be included on daily records of care given timewise.By the way has the thread got the record number of comments now 237?? There is a lot of support here to continue the fight !!!

    • Jenny 1 year ago

      In principle I agree Jennie, and the various forms could prove invaluable to demonstrate intensity. However, far too many of the forms I’ve waded through provide contradictory evidence within the same form, which weren’t followed through, eg different weights, medication and conditions recorded on the same occasion used on a Waterlows and a dietician referral. I understand the pressure of workload, but when patients need at least 7 forms filled manually and digitally per visit, it’s likely that error and boredom creeps in. In my relative’s case the repeated confusion quite probably helped the development of more severe conditions and prevented an earlier Continuing Healthcare assessment. Overall, the notes present a picture of chaos, and a total absence of joined up thinking.

    • Chris-G 1 year ago

      I do wonder just what level of ‘comprehensive’ note taking is carried out within non dementia residential care (not nursing), homes. The taking of notes and creation and monitoring of care plans would seem to me to be an indication of complexity and intensity at the very least……. But only if they are completed with some accuracy, with corrections, and comprehensively…… As I keep reporting…… Even making a cup of tea for someone without cognition or who is aggressive during care provision, is much more complex / intense / unpredictable than for the kindly old lady that only lives in a residential home because her family don’t have room for her. Ergo, the care notes should reflect much, much more than ‘ 11.00 am Tea given’. What is missing is: Was it made in accordance with the care plan? (My mum was always getting tea when she only drank black coffee). Did they drink it? Was it fed to them? Who fed it to them? Was there resistance or other problems? What quantity was offered? How much was actually drunk? Any medical observations? (Chocking dribbling, pain?)…….. When such is applied to the very much more complex care needs then the Nursing Home records would and should read like ‘War and Peace’ and I have only seen one Nursing Home where such similar levels or records wee kept…… At on time, more than half of the residents there, were NHS Continuing Healthcare funded and every one else received Funded Nursing Care. Records if properly compiled really do make a difference…… But who at the home’s even comprehends that?

  5. Jennie 1 year ago

    You would think 2 severes is enough, unfortunately not in today’s climate as it seems CCGs are forever moving the goalposts to decline Continuing Healthcare (CHC) .Cynical but bet they will wait to find a weeks evidence of less challenging behaviour to decline eligibility. They should be looking at a lot longer period than that to assess properly.Also disturbing to note about the sleeping in a chair surely not acceptable which suggests current care plans not working. CHC is supposed to be more than about funding but to ensure the right care is in place to meet needs. Read the national framework thoroughly and make sure every guideline is followed and complain, appeal all the way if you have to. After four years feel as if I could do an assignment on CHC with the amount of material I have read on subject but without I doubt I know my relative did have a primary health need. When you are confident enough don’t let anyone get in your way of the right decision. There is plenty to read on this website and scores of feedback on every subject to keep you up for hours, but don’t get obsessive . Take Chris G’s advice on making a diary to record behaviours and needs probably not documented properly by carers. Make sure you get a copy of that Decision Support Tool and fight any opportunity to deny funding.

    • Linda N 1 year ago

      Thanks for your advice and encouragement Jennie. Prior to the assessment day I spent days reading though the National Framework guidelines and thought I was prepared but unfortunately on the day all the knowledge gained ‘went out of the window’ but I guess you learn more the further you go into this process!

      • Jenny 1 year ago

        Jennie is correct. 2 Severes is enough! Unless they are willing to explain their deviation from the Scoring system on the DST itself, I’d suggest you send in a letter, sent by Signed For to the CEO of the CCG or the Commissioning Support Unit drawing their attention to that. Getting into appeals and reviews adds to the stress. Go in at the earliest stage well informed , obviously tenacious and demonstrably ready to hold everyone involved in the process to account, and you will get somewhere. Slowly.
        Was Behaviour one of the Severes? If it was, then why score it as that now, yet ask for ABC charts? I suspect you are right; it’s laying the ground for a possibility of downgrade at 3 monthly review, or perhaps even at Panel.
        As a side point, I’m interested to know how ABC charts are considered useful in observing people who have lost capacity. The origin of ABC charts is in Cognitive Behavioural Therapy and is aimed at replacing subjective, emotional reaction with objective, rational thought. Sadly, that isn’t an option for people with advanced dementia or some other forms of mental illness. But hey ho, it’s another form to fill in.
        More nonsensical forms = more volume = less understanding and clarity = fewer awards of NHS Continuing Healthcare.
        Keep notes of your own. Every visit note down how your relative appeared and what they were doing, or not doing. Ask staff how the relative has been, and get the facts of any incidents (wandering, aggression, meds refusal etc) which may just be dismissed as everyday occurrences for them as care staff. When you look back over a month or more of your own notes you’ll have a better picture than care home records which endlessly record “X had a lovely afternoon relaxing”, or “X was a bit cheeky to Y this afternoon”. If you see those type of entries, ask the staff what they meant, and if necessary explain the need for more explicit notes. They may or may not help, but if you don’t ask, they will continue to write in the style they’ve always done and which may not help your relative’s case.

  6. Linda Nell 1 year ago

    Would appreciate some advice regarding NHS Continuing Healthcare (CHC) assessment held early in November for my 87 year old Uncle, who has been in a Nursing home since November 2016. Due to his extremely challenging behaviour and high risk of falls; (suffered two falls this year, one resulted in him being admitted to hospital) since August staff at the care home are allowing him to sleep in a recliner chair in the lounge every night as he will not stay in his bed.

    At the CHC assessment, all domains were agreed by the Multidisciplinary Team (MDT) and scores were 2 Severes, 3 Highs, 4 Moderate, 2 Low and 1 No need. At the end of the meeting the Nurse Assessor stated that she couldn’t give a recommendation as there wasn’t enough evidence for the Behaviour domain. She said she would ask care home staff to keep an ABC chart for one week and would send me a copy of the completed Decision Support Tool (DST) to add any relevant comments within two weeks. Still waiting for copy of DST and eligibility decision. Have written to CCG Clinical Lead Nurse expressing my concerns about the assessment process, also requested copy of draft DST and copy of a Checklist screening document that was carried out for my Uncle in January 2017 which I knew nothing about! I complained to CCG complaints team as my letter and requests to CCG were ignored. Have now received a reply from CCG Clinical Lead but still waiting for DST paperwork and most importantly eligibility decision!

    I am very concerned about my Uncle’s sleeping arrangements as I don’t believe it is good for his health and well being but the situation seems to be ‘played down’ by CCG and other relevant agencies!

    • Jenny 1 year ago

      Linda, has the Occupational Therapy service assessed your Uncle? Surely sides on his bed and/or pressure mats might help?

      • Meggie 1 year ago

        We have little faith in Occupational Therapists. They would not provide grab rails in the bungalow because they said the walls were the wrong type and refused bed rails/sides because my father (due to mental state) might try to climb over them. Later when we were struggling to lift and move him they arranged for a hoist but left it without its battery so we couldn’t use it because we weren’t trained, knowing that without it we would have to continue lifting him manually at risk to him and ourselves. Their own health and safety rules trump the well-being of patients every time.

        • Chris-G 1 year ago

          Father in Law demanded his bed rails for three years because he was afraid of falling. Hardly surprising, because he had become incapacitated due to a head injury after a fall.
          I kept finding some and fitting them within the care home and they kept taking them off because there was not a DOLS in place…… Yet he also needed them to assist with his mobility in bed (Two leg amputations). So in short people with care of others are often idiots and untrained remain illogical even when shouted at.

      • Linda N 1 year ago

        Hi Jenny

        Thanks for your advice…this is all very new to me…I’m at the very early learning stage!! Apparently the staff at the nursing home will not use the sides on his bed as he tries to climb over them…he’s unable to stand or walk and is therefore at high risk of another fall. He has a sensory mattress and floor mat but the problem arises when staff try to put him to bed at night he then demonstrates aggression, becomes agitated which then raises his blood pressure etc. Apparently he doesn’t demonstrate any of this when he sleeps in the chair in the lounge..but surely that can’t be an acceptable solution!

        Yes, the severe scores were for Behaviour and Cognition. In my letter to the Clinical Lead at the CCG I questioned why the score was agreed then at the end of the meeting state there isn’t enough evidence for the Behaviour domain to make a recommendation. His reply indicated that this is an acceptable process. I will take your advice on board and write to the CEO and if ok use your reasoning behind the ABC charts not being suitable in his situation I.e. advanced/end stage dementia. I’m due to visit my Uncle next week (2 hour journey so don’t get to visit that often) so will look at the completed chart….many thanks!

        • Jenny 1 year ago

          Another point worth noting from The National Framework (and bringing to the attention of the CEO) is that evidence for the Decision Support Tool does not have to be of the standard required in court, so your own notes and observations become even more important. An absence of ABC charts does not mean there is no evidence of the behaviours you have observed.

  7. mark loseby 1 year ago

    Hi everyone i have been quiet on here for some time as i have been fighting the CCG a second time through their kangaroo court (sorry Multidisciplinary Team) process.
    2nd time round was even worse/more farcical than the 1st…i didn’t think that was possible!
    Anyway i just wanted to say i agree with Richard have a few days off over Xmas (the highly paid bureaucrats are already enjoying the festive season!)
    Have a rest and we can all start the good fight in the new year.
    Just in case you don’t know (Sorry if this is old news) Channel 4 Dispatches are doing a programme on NHS Continuing Healthcare funding in the new year. 2 people i know of are being featured so fingers crossed it helps bring the scandal to the attention of the media and public and MP’s.
    Merry Christmas to everyone on here…Good Karma is coming!!!!

  8. Glynis Evans 1 year ago

    Hi Richard – She is a high calibre journalist who specialises in the area of Health & Social care. She covered the subject a few years ago, before it got as bad as it is nowadays. She is shocked at what is happening & is working closely & in depth with the 2 people concerned. I am sure it can only do good. Have a peaceful & restful Christmas

  9. Laurence Sutton 1 year ago

    It is quite clear to me that CCGs and Social Services are in collusion and jointly act in a manner to deprive those patients with income and assets of health care funding even when they are clearly eligible. This is done by not conducting the appropriate Checklists, misinforming or not informing patients and relatives and down grading health care needs. More over the assessment processes are often illegal and more often than not ignore Coughlan, or just say have considered Coughlan but still ignored the implications of it. This is a national scandal and its hard to believe that the national press has not taken the issue up. Maybe Private Eye should take up the case??

    • Meggie 1 year ago

      Hi Laurence, I agree with your comments and remain at a loss as to the lack of interest by the media in what amounts to abuse of vulnerable elderly people. When care workers steal money from their elderly clients they are portrayed as monsters in the press and prosecuted as criminals. It seems that taking far far larger sums unlawfully from the elderly is OK as long as the perpetrators are social workers, doctors and nurses, ie local authorities and the NHS. No righteous indignation from the tabloids, no criminal convictions. I believe that no-one cares enough, certainly not the media or the country’s MPs, all of whom must have elderly people in their constituencies who are effectively the victims of theft.

    • Richard 1 year ago

      Its way too complex for the papers would need a high calibre investigative journalist with personal experience methinks,

      In the new year I will be looking at the Serious Fraud Office with respect to offences under the Fraud Act 2006 abuse of position and Which the Consumers Association who have the standing to put in a Supercomplaint .

      My advise to all is take the next few days off (CCG and LA’s have) enjoy time with family. I didn’t last year and regret it.

      • Richard J. Terrell 1 year ago

        Serious Fraud Office might be of interest to me too, being not ONLY are the Social Services and NHS defiant to admit their procedures are NOT being correctly followed, in one of two friends I care for, they charge monthly the same off the shelf care package on leaving hospital but still NOT assessed a few years ago, REGARDLESS of actual care received, being I only need certain assistance as I care 24/7 myself. The time sheets of the Carers coming in each morning are too ignored meaning we have invoices stacked at some £30,000 plus for which we REFUSE to pay a penny, Against that, Council have twice threatened County Court, and in the meantime state they will take the money by Direct Debit for which they have NO Authority to do. In addition, they claimed in writing some months ago the charges had increased, it would be backdated, but hadn’t a clue by how much? Though, we are not interested in ANY charges being the full assessments are STILL not complete, no care plan, no Carers assessment, and NOT responding correctly to both an Advocate and Solicitor, and the matter has sent me to A&E moe than 27 times, for which Social Services ignore all reports. My other friend is in severe pain, a complex of needs, but ONLY receives Social Carers whom mostly do not even understand being blind, but her means, mean she qualify no Social Care Costs. However, I supply incontinence pads she subsequently assists cost because her need is OUTSIDE Social Services remit. However, Social Services determine she is not ill enough to qualify a NHS Continuing Healthcare Checklist, but cries everyday, and her daughter has quietly disappeared from the radar. So has the Social Worker conveniently!
        My point here is that… regardless; if you have means or not, social services in this case and likely other councils, take the easy route of determining all needs as social care regardless of the law, but maybe if you have called the vicar for your last rights, the case maybe referred!

  10. Tom 1 year ago

    Hi All

    Had CCG come this week to review my dad’s Decision Support Tool (DST) and go through all the criteria. But it was the 1-1 care that they are suggesting removing. In this situation , my father receives 24 hour care which is funded 20 hours by the Borough and 4 hours by the nursing Home.

    He is a falls risk and has severe short term memory impairments . A 1-1 carer stays with him at night and looking at the sleeping charts, he will be restless some nights for different hours. Sometimes convinvced he needs to go and ask 1-1 to help pack up clothes , or some nights he will sleep for majority. Some nights only 2 hours.

    So the 1-1 Assesor says , I’ve noticed from looking at charts over last few months, he sleeps at least 2 hours. She stated there was a pattern although when i looked I found different hours to when he falls asleep. She suggested removing the 1-1 for 2 hours a night and having a bed sensor ( which he already has), a mat on the floor and checks from the home every half an hour. The home can be understaffed at night, he was assessed by physio that he can get himself out of bed if necessary , there is no determination on the hours he’d fall asleep each night and it wouldn’t be in his best interested to take away the 1-1 care.

    What should i be focusing on in this scenario or is it that there is no grounds for them to remove 1-1 for 2 random hours each night when there is no guarantee he could wake up any time and be confused / try to get out of bed. He is not near the nurses reception and wouldn’t know to press the buzzer in his room. If he fell no one would get there in time.

    1) Can anyone suggest anything in this case?

    One other concern , was they mentioned how it’s not good for my dad (or anyone) to get only 2 hours sleep. This of course is true but they were suggesting the GP looks into a sedative. The issue with this is my father is on various medication for depression , epiliespy ..lots..They can’t just add medication which can have an adverse affect to his other conditions.

    2) So this can’t be considered to justify taking away 1-1 can it?

    3) As I said the home pays for 4 hours, but, if there is a shortfall as CCG are refusing to pay the 2 hours, is the nursing home oblidged to make up the hours or is that irrelevant?

    I’m in my 20’s so this is all tough but thanks!

  11. Tyler 1 year ago

    Hello, I’m hoping someone who has been through something similar can give their opinion/experience. I apologise in advance if my terminology is incorrect or if this should have been posted somewhere else.

    My wife’s mother is currently NHS Continuing Healthcare (CHC) funded and is in an assisted living flat. Sadly, her condition is deteriorating to the point where the assisted living place can no longer meet her needs. We all agree that it would be better for her mother to move to a care home with nursing closer to us. However, this will require moving councils to a different area of England. Does anyone have any experience of this? We have been told that once she moves, her former council (or CCG or whoever pays CHC) will pay the new local authority but that they will only pay the new “local authority rate” of some absurdly low amount.

    Having read loads on the Care to be Different website, this seems wrong. I’ve looked everywhere for examples of moving councils and CHC but haven’t found anything.

  12. Tom 1 year ago

    Hi All

    Hope everybody is doing ok with their loved ones.

    It’s the Continuing Healthcare (CHC) assesment for our Dad soon, but I wanted to ask you all about a new change that is seemingly in place.

    I had a few questions if anyone could offer some advice?

    How does funding for a 1:1 work exactly? What is the criteria? Is it challenging behaviour or something else, eg upredictable behaviour or safety?

    My Father has 24 hour 1-1 due to being a falls risk and due to his bleed on the brain, suffers from confusion and short term memory loss leading to challenging behaviour at times with not understanding where he is etc.

    The assessor has stated that they want a behavioral chart every two weeks. These two week reports are apparently a new feature. Can anyone shed any light?

    But the Assessor said they could limit the hours he is cared for. Does anyone know what they base this decision on? Do they go on the 2 week behavioural charts and take an average?

    Thanks for reading and any help….Really stressed.

    • Richard 1 year ago

      1-1 doesn’t exist as a separate entity in the National Framework. If that is the assessed need then it is funded subject to the normal review cycle. It can only be changed by a full Multidisciplinary Team meeting and only if care needs have changed.

    • Chris-G 1 year ago

      Tom, It might be good if you interrogated the charts and ensured that the needs associated with the (generally brief) records is properly spiced up. i.e…… Mr x walked into Ms y. She pushed Mr x and he hit Ms y. There needs more. What were they both doing? Where were they prior. Who saw it and when did they first observe matters. What was the outcome. How long was spent resolving the matter. Any injuries. What was the treatment. Current practise to prevent recurrence. Is similar behaviour prevented. How is it prevented. How many staff required to resolve matters. How many staff required to prevent similar matters…….. Why did it happen in the first place…… Records (often called ABC), of this nature never contain enough detail. Then again we have ‘won’ at Independent Review Panel on diary entries made by my father that complimented the very poor recording of incidents by nursing home staff who often see the resolution of the problem to be the end of the matter.

      • Chris-G 1 year ago

        P.S. It was also stated at Independent Review Panel that no one is cared for in a vacuum……. Others within the same environment have needs too and it is impractical to provide 1 to 1 even in a nursing home. If a person does not have cognition then they cannot agree to stop doing something either….. Ergo the behaviour can only continue unless greater resources are expended in ensuring the patient’s and other’s safety….. This is complexity, intensity and unpredictability…. Any one of those is sufficient to warrant Continuing Healthcare funding. The key is the minute and nit picking details. And you won’t get the home to provide anything like enough detail to support you.

  13. Jenine 1 year ago

    So what happens if your relatives Continuing Healthcare report marked confidential is then passed on to a debt collector working for the LA (outstanding care home fees) and is using the non-eligible ruling to try and sue you. The report is false and we have substantial evidence to refute its content and the decision and are going to Independent Review Panel. It is a serious matter when the CCG think they have a right to pass on a report to whoever requests it. Will the ICO and CCG take such a breach of DATA protection and confidentiality seriously when that breach has brought on harassment letters and phone calls from debt collectors? We will see.

    • Chris-G 1 year ago

      2014, I told the council’s debt collector to take us to court because it would be easier than me doing it to them. I almost pleaded with them, I dared them. I gave them chapter and verse about how the assessment would need to be re visited in a court of law and of course would require the CCG/CSU to be present so that a real judge could look at the reasons for their and the council refusing Continuing Healthcare funding.
      The NHS would need to be present because they too might owe the money.
      Then again, a judge would also have to apply the Coughlan test of the council’s legal remit to accept and pay for care whilst recharging the patient…… none of this is even possible until the appeals process is completed. If I have to abide by the appeals process before going to court, then so do the council.
      As regards the Data Protection matter. The council formed part of the Multidisciplinary Team (MDT) and the further recommendation/decision making panel; as such they are entitled to know why they have to charge and collect cash to repay the care they fund. (Although a recent MDT member at the council did not hold a copy of his own Decision Support Tool). So no it is unlikely that it is a data protection breach. However, I made the point that when appeals are underway, if the council decides to accept the care costs then they should wait to gather financial data until the appeals have finished. The reason? It is a data breach to acquire data and process it unfairly…… if the need to do it is also pointless (because you win), then having a refunds policy indicates that they know of the risk of data acquisition being pointless and that is also a breach. If your appeals are successful then both scenarios exist and the council is in breach.
      I made the point to them that if they insist that they have a legal mandate to collect data, then they do not have such a mandate to process it and claim money that might not be theirs….. For that is theft under the theft act……. too. I never heard from them after that. Until may 20017 when a new MDT assessment that recommended funding was overturned…… I simply told social service assessor (from the MDT) that in the circumstances of his failure to appeal the matter (overturning his recommendation), then he could whistle for the money……… I reiterated much mentioned above. He took the point and I still have not heard from the so called special projects team who usually take over if the social worker is refused compliance.

  14. Johanne 1 year ago

    Hi – I’ve been fighting for a retrospective review for over 3 years (unfortunately my mother in law died before a review could be completed) I have just had the decision back from Multidisciplinary Team (MDT) saying she did not qualify. I have completed a Notice of Dispute but my question is why are we not allowed to see the records used when carrying out the review – its like trying to appeal with both hands tied behind your back. They claim I cannot see any records as they are covered by the Data Protection Act. I can maybe understand if there is an issue with outside agencies such as Social Services or care home records but not services covered under NHS – Has anyone else encountered this problem ?

    • Richard 1 year ago

      Suggest forwarding their comments on Data Protection Act (DPA) to the Information Commissioner’s Office. DPA is to see records are released appropriately after all it is your mum’s data not theirs clearly they are getting confused with the official secrets act !
      Issue a Subject Access Request for all records data held by them in your relatives name and in your name

    • Chris-G 1 year ago

      Johanne, As the instigator of the process you have been accepted as the representative. … The data protection act (long after interpretation by the Information Commissioners), allows a person close to the matter and/or patient to make a ‘subject access request’. If the Continuing Healthcare (CHC) team is only reading the Act then they are wrong…. Law moves on in court challenges….. Then again the mere fact that they are already providing data in relation to the matter is sufficient that they should accept your status as representative and give you the data.
      Ignore the people at the CHC offices and make a subject access request via the CCG directly.
      The following reference https://ico.org.uk/for-organisations/guide-to-data-protection/principle-6-rights/subject-access-request/ states:-
      ‘The Act does not prevent an individual making a subject access request via a third party. Often, this will be a solicitor acting on behalf of a client, but it could simply be that an individual feels comfortable allowing someone else to act for them. In these cases, you need to be satisfied that the third party making the request is entitled to act on behalf of the individual, but it is the third party’s responsibility to provide evidence of this entitlement. This might be a written authority to make the request or it might be a more general power of attorney.’

    • Meggie 1 year ago

      There is much ignorance and misunderstanding it seems about patient records and access to them. It is not, however, too much to expect staff working in the NHS and involved in areas such as Continuing Healthcare (CHC) where medical and care records are essential to the process, to have some basic knowledge and understanding. Or, at the very least, if they don’t know the rules/laws/processes to apologise and tell you they will find out rather than simply refusing and saying access is impossible. When Dad (I held POA) was in hospital 2 senior nurses refused access to his notes, insisting that I needed a lawyer and then telling me no-one was allowed access to medical records, even their own, under any circumstances. Why are NHS staff so poorly informed about this? Making a subject access request means dealing with admin staff whose job it is to deal with such requests. In my experience, unlike the CHC teams and clinical staff, they are usually very helpful.

  15. Petrina Shurmer 2 years ago

    We been trying to get Continuing Healthcare (CHC) for 4 years 6 months then my father-in-law fell very poorly in hospital with chest infections, urine infections, catheter in for at least 2 years. Many times rushed into hospital with breathing problems fasted tracked bye his doctor to get re accessed for CHC I rung every week was told it will be within in 4 weeks this was June 2016. Then on December 19th 2016 he passed away. I rang every week from June to December they said they can still access his, even if he passed away. I lost all faith in the CHC System. It has been so stressful the assessors use a tick box system my father-in-law was so on oxygen 24hrs a day I feel we were let down as a family I have no faith at all in the system it seems if you have saved all your life that you have to pay. We have taken advice and have let the professionals take it to the insurance Ombudsman which will be final. We tried again in June again in June this year and have been turned down again. It seems so unfair he was a very poorly man .

  16. Meggie 2 years ago

    I am at my wits end. Dad was discharged from hospital last Wednesday night and on Thursday morning his GP said she would “fast track” him. I didn’t ask precisely what she meant by this – I had been in hospital with dad for a week and was barely functioning from lack of sleep. I just assumed that at last something would happen. It is now Monday. Worried to have received no contact from the CCG and beginning to realise that the Doctor may not have been talking about CHC at all, just the immediate implementation of a 4 care visits per day plus a 24-hour phone number for district nurses so that we can request specific end-of-life medications/injections. This leaves us providing the other 23 and a half hours of care. Who would call the nurses for dad in the middle of the night if we were not here?
    I emailed the doctor and ask her to clarify what she meant and got a message saying she is not in till Wednesday but they will ensure she gets the message then. I have contacted the social worker who was meant to be attending a DST meeting next month to ask who would put in a care package for an NHS CHC patient – she too is unavailable and I have not heard from the person my email was passed on to.
    Dad cannot really be left and we are providing the 24 hour care he needs at the expense of our own health helped by a private carer we pay for ourselves. The lack of sleep(we have to alternate who stays up all night between two of us so only sleep alternate nights) is really getting to us.
    There is no sense of urgency from anyone. It is now 3pm and in another hour it will be too late for anyone to do anything as the NHS and social services seem to start winding things up around 4pm.
    I feel, as ever, entirely powerless to make anything happen. Even now Dad doesn’t seem to be anyone’s priority.

    • Chris-G 2 years ago

      I’m listening and you are in my thoughts. And I’m getting madder for you. Keep at it…… What else can you do? Who else can you contact? Is there a charity available to assist perhaps?
      Once again I wish you the best.

      • Meggie 2 years ago

        Thank you. Your kind thoughts are much appreciated. After another angry conversation this morning and a lot of shouting from me when more assessments were mentioned we may actually get some help. What it will be and when it will start will be anyone’s guess. In the meantime the Continuing Healthcare co-ordinator understands that I intend to invoice for the care we and our private carer are providing in the absence of anything resembling appropriate care from them. The NHS is broken. Fast Track designed to put care in place quickly but cannot act quickly because the NHS does not employ staff to provide what is needed. It can only ‘commission’ (I hate this new NHS word) from private care agencies. And clearly profit-making private care agencies do not have staff on their books being paid to do nothing just waiting for a call from the CCG to say they are needed. “I can’t guarantee it. It depends on capacity” is what I keep being told. If our experience of private care agencies locally over the last year is anything to go on they will not have capacity. So much for appropriate care in place within 48 hours.
        Why should getting healthcare be a battle? I am fed up of having to argue, fed up of being reduced to anger. When told again this morning that if we wanted care he would need to be assessed to see what care was needed, I pointed out that Fast Track was meant to do away with all this and get appropriate care in place within 48 hours. I was immediately asked ‘who have you been talking to?’ as though I had been told something I was not meant to know.
        Healthcare reduced to box ticking, procedures and processes to be followed – no sight of the patient, no compassion and no care.
        Thank you for ‘listening’.

        • Chris-G 2 years ago

          To get all academic for a minute Meggie, I have long argued with our CCG’s directors about this commissioning of care or any service …… Imagine commissioning of privatised firefighters…….. Would it work? Of course not. It is the new plague…… every employee working flat out at ever shrinking spheres of responsibility, so that no one person can be blamed for failure or catastrophic error such as we saw with the Grenfell Tower fire. The breaking up of councils into private companies to invoice for charges or to calculate benefits and to do public works meant errors would go unnoticed; for example, the residents were still being charged for rent over a week after the catastrophe. What are the odds that their private accounting firm was also paying a potential housing association too?
          I can back that up with Continuing Heanthcare-relevant similarities from our council……. They continued to make monthly charges of my FiL for six months (not statements but new monthly care charges). They also continued to pay the nursing home for those six months too. With so much riding on this being a financial matter before care is considered, it appears outrageous that they cannot even control the money aspect and it does not engender confidence in the care aspect as a result……. Good luck Meggie.

          • Meggie 2 years ago

            Today I received a phone call from the CCG. I didn’t have to get angry, I didn’t have to cite the National Framework, I didn’t have to explain at length what I wanted or why what I was being told was nonsense. I was told that not only had Fast Track been approved but that 24 hour care at home would be fully funded as I requested.
            A night sitting service starts tomorrow and the private care/nursing agency can offer afternoons as well from Monday, plus additional short visits in the mornings, afternoons and evenings to support my sister and our private carer with personal care, repositioning etc. They have also agreed to fund our private carer.
            Sadly, Dad is now at the end of his life and may only benefit from NHS continuing care for a few days. But he will die at home as he wished, and truly “cared” for.
            After 18 months of fighting it’s over.
            Thanks to Angela for her book and this website and to all those individuals who have shared information, personal stories and answered queries to help others.

          • Chris-G 2 years ago

            Hi Meggie, Great news….. If for a very sad reason.
            Please remember that if you wish to try to backdate care based upon needs that must have been well in excess of those that a council could provide for (and yourselves too), then you can continue the fight…… It is the case that so many people simply heave a sigh of relief and let it go and if this is what you want then that is fine too.
            I wish you and your family well.
            Bearing in mind that my mum is once again in hospital due to poor GP care at her nursing home, I can entirely sympathise with your predicament but I do not have the terrible stress of arranging for Continuing Healthcare (CHC) because (although it has been two months without decision), we were promised continuation of CHC at her last assessment.
            Once again, all the best.

          • Meggie 2 years ago

            Chris, So sorry your mum is in hospital and hope she is soon back at the nursing home, where, I seem to remember, you were happy with her care. She has someone looking out for her best interests, you, which even when someone is in hospital or a nursing home is essential.
            The National Audit Office report gives an indication of some of the problems with Continuing Healthcare but it cannot through figures alone explain the human costs. There just has to be a better way. Until there is complete reform of the way on-going, long-term healthcare is provided people will not be treated properly, fairly or lawfully.

        • Jenny 2 years ago

          Meggie, I’ve been reading your posts whilst at a safe distance on the other side of the world, and wondering how our revered NHS in the Uk has got to this dreadful stage. The answer of course is an ageing population and funding.
          Unless these plain facts are acknowledged, and the issues of training of all staff involved in Continuing Healthcare (CHC) and the deception currently encountered at every level is tackled and penalised, sadly little will happen beyond an inevitable slide towards privatisation.
          I too have have a big fight for CHC and am continuing for a retrospective claim. When you “Win” on behalf of your relative, the relief is enormous and hopefully, for them too.
          I hope you and your family take pride in the support you have shown your Dad, and that he is comfortable and well cared for in the coming weeks.
          We are, indeed, fortunate to have access to this site and all the resources it offers.

        • Angela Sherman 2 years ago

          That’s really good news, Meggie. Well done for persevering, and thank you for your very kind words.

  17. Meggie 2 years ago

    After 18 months being denied assessment for Continuing Healthcare (CHC) Dad ended up in hospital and after a week of indifferent “care” has deteriorated so much we do not think he will recover. He is now back home where we provide 24 hr care. I did not believe anything much could surprise or shock me about CHC after all these months of unlawful delay obstruction and lies, not to mention what I have read on this site, but the NHS has surpassed itself in its cruelty over the last six days. ‘Care’ from nursing staff has been careless and indifferent. Many so-called professionals lied to us outright about so many things, including Fast Track and access to medical records; a nurse, a social worker and a doctor all asked about my father’s savings, one wanted an exact figure and was ready to write it down and a consultant, unforgivably, smiled at dad and gently asked if he wanted to go home and when dad whispered yes, the doctor said in that case they would have a little chat about his house and how much he had in savings and he, the doctor, would help to get him back home. My father with severe Alzheimer’s and now physically very ill could not have been more vulnerable. No less than 4 doctors refused point blank to Fast Track despite his frightening deterioration, insisting he had to be 2-3 days from death or it did not apply, and one, terrifyingly, threatened to stop us taking dad home when I said we intended to discharge him. This doctor was arrogant and did not like the fact that I disagreed with what he told me about Fast Track and CHC, especially as he had boasted of being legally as well as medically qualified. I quoted the precise language used in the National Framework and he informed me he did not have to listen to me if I spoke to him like that and added he could prevent me taking dad home. He was backed by nursing staff who threatened to call the police and have us arrested. Finally, two senior nurses insisted we were not allowed copies of his records in any circumstances regardless of a POA unless we had a lawyer and when finally I shouted at them in frustration that they didn’t know what they were talking about, exhausted after five nights without sleep sitting with my father each night because I did not feel he was safe if left, they called their security staff and told me I would be escorted from the building and not allowed to come back.
    The NHS acts with impunity to bully patients and their families and acts regardless of the law and yet I feel entirely helpless. I do not believe dad will survive long enough for me to attend the Decision Support Tool (DST) meeting in July and for the CCG no doubt this will count as a ‘success’ – 18 months of care funding saved. However, despite what we hear from politicians and the media this is about so much more than money, it is callous disregard for the best interests of sick elderly people, most of whom cannot stand up for themselves and whose savings, if they have any, are regarded as fair plunder.
    The DST meeting next month for which we have had to fight for 18 months now looks entirely pointless – all we wanted was support to keep dad at home – and that support is now unlikely to be needed.

    • Chris-G 2 years ago

      Meggie, I just cut and pasted this into a Facebook post. I hope that you don’t mind. I am so angry and do not known what to do to help. It sounds very much as if very expensive vengeance is going to be your only option. I wish you and your dad well.

      • Meggie 2 years ago

        Chris, Thank you for your kind reply.

  18. Judy 2 years ago

    Interesting Richard that social services on your side, proves that CCG are ” law and order ” as far as Continuing Healthcare (CHC) goes and there is nothing to change that than to go to Court. Anyway when did healthcare become only intense and complex etc. Say if I was to have a standard knee op and someone one more ” complex” would only the latter be free? Crazy isn’t it. We are still waiting for the Local Authority (LA) rep at our meeting to tell us exactly what they are funding, i.e. what are the social needs. 6 months on and still waiting. Why? because our relative’s needs were as such there was nothing social to provide. Last social assessment fraudulent as on no headed paper, not dated, not signed by the relative or family and contained such false information, the LA should be sued for understating needs that could have had a detrimental affect on the care received if it was to be considered a care plan. Care needed way above Coughlan. Though the CCG state in their response letters ” in accordance with Coughlan ” we have no doubt they probably have never read the case and this is a copy and paste insert to all their correspondence. A lot of their Decision Support Tool (DST) was unevidenced because there was no evidence to support what they said, on the contrary, we rewrote the DST for the panel and evidenced everything, they took no notice of any of it . We shall see what the Independent Review Panel (IRP) says though the DST has been altered twice already, signed off by 7 “professionals” at 3 different stages . Why would the IRP change the decision? what to agree 7 of them got it wrong?? I don’t think so. They are taking us all as idiots and only a judge will change that mindset.

    • Meggie 2 years ago

      I agree. Until the courts intervene in some way Continuing Healthcare (CHC) will continue to be misused, ignored and used on the whole to deny care not provide it. We were due CHC assessment next month after waiting through 18 months of delays, obstruction and lies but now dad is in hospital, deteriorating rapidly and still it seems he needs ‘social care’. A nurse and a consultant have refused to Fast Track so we can get some support put in place to take him home, insisting it is only for people with days to live. The discharge nurse asked us if we knew exactly how much money he had in savings, and informed us that the Intermediate Care Team which had visited him before his admission wouldn’t ‘pick him up’ after discharge because they felt he was more suited to a ‘care package’ ie social services/private care agencies. I still struggle with the fact that it is NHS staff who are part of the problem, despite the general view in the country at large that they are all saints who can do no wrong. They act contrary to statutory guidance and unlawfully and yet we seem powerless to stop them and force them to do the things they should, even when the health and wellbeing of very ill vulnerable people is at stake.

  19. Richard 2 years ago

    Just a quick update as we await ( not with baited breath ) the result of our most recent Multidisciplinary Team (MDT) meeting. Having asked the local authority (LA) social worker (SW) (2 present!) what was happening post meeting and what recommendation the MDT had made to CCG her reply came thus:

    “You know that the Parkinson’s Nurse had to leave before the end of the MDT. The chair indicated that she would contact the nurse. I did not understand the chair to say that she was to reconvene the MDT. It has not reconvened. The request for disclosure of my assessment is from the chair, who wishes to see my assessment in full. My understanding is that she wishes to see the assessment before a recommendation is made.”

    Given the Parkinson’s nurse had to leave – she was “only booked till 4 pm” – and from the above it is clear that in the 10 minutes between us leaving the meeting and bumping into LA + CCG folk at the car par ticket machine any recommendation is being made by the nurse assessor not the MDT.

    (SW asking for permission to hand over written copy of her care assessment)

    • Richard 2 years ago

      Well surprise surprise the folk from CCG they say NO !

      Multidisciplinary Team (MDT) met in May; failed to score all domains and documented individual recommendations from some of the people present (3 of which are missing ) one failed to stay for the last two domains to be scored… so covering letter reads:

      “after careful consideration the Continuing Care PANEL which met on 13 June are unable on the evidence available to support the application…… it was the agreement of the PANEL that X’s healthcare needs were predictable not complex or intense etc….”
      Curiously it appears the MDT failed to make a recommendation, the two LA social workers (yes two) stated that they believed X’s needs constituted a primary health need and are equal to those of Pamela Coughlan. So the actual decision making appears to have been abrogated to a CCG panel rather than getting a recommendation from the MDT.

      • Chris-G 2 years ago

        Richard, I have caught ours out twice under two versions of the National Framework; The CSU/CCG and previously, the Strategic Health Authority both failed to have in place an interagency disputes process. This would allow a council an agreed path to dispute CCG eligibility decision making…… The process should be there and if in your area, it is, then bearing in mind the social worker’s belief that a Primary Health Need did exist, I would appeal to them, the council via the CEO requesting that they dispute the outcome or explain why they will not support their own assessors.

  20. mark loseby 2 years ago

    Has anyone heard of this before?
    Currently CCG joint funding care with council for a year now due the the mess they made of the Continuing Healthcare (CHC) Checklist process etc. Anyway today after our formal complaint was finally rejected as without merit an email arrived. The CCG want to do a routine clinical review of our relatives needs in the care home. They state as power of attorney we don’t need to be there as it is not the Multidisciplinary Team (MDT) meeting, however they say the review will be used at the MDT meeting to, and i quote without any irony…’It will be used to inform the CHC eligibility decision as part of the Decision Support Tool in conjunction with the professionals other assessments’.
    Just coincidence it is now happening after they believe they have got off scot free by rejecting our complaint?
    Never heard of this before and can’t say i have found it in the National Framework.
    Maybe i am just a skeptic but sounds like a stitch up attempt to me.

    • Chris-G 2 years ago

      it is my experience that (because there is no sanction) the NHS will prevaricate regarding complaints regardless.
      Bearing in mind that the council has a legal responsibility to not fund care beyond a very obvious level (Coughlan case), then your complaint with an intimate pen portrait of the needs that they are funding or recharging for should be addressed to them via their CEO.
      The NHS can always counter any appeal or complaint with so called ‘professional judgement’ being the spanner in the works regarding the assessment, the Decision Support Tool domains and the recommendation and decision, unless you can display outright unlawful or incorrect procedure.
      In short they have no legal constraints because they (deliberately?), will not give a legal definition of much that they seek to use against us…… ‘Social Care need’. ‘Primary Health Need’; both are the crux of the matter but are unaccountably undefined except in some wish washy way within the National Framework which is for the most part guidance and contains very little in the way of law.
      However, the council has a legal duty not to join in with the NHS or pay for care needs that are beyond their legal limits. I suggest that you look at
      There are also sites that list Coughlan’s needs on the internet. I usually ,(Type hers out long hand first), compare my relatives needs (typed out between Coughlan’s needs), with Coughlan’s on the same document for use in assessments and the almost inevitable appeals. I think that such a list exists within the long court judgement too. This list lends some legal character to the argument with the council who have a right to appeal NHS decisions but seldom do.
      As for the routine review(s). The NHS tried this regularly and were often caught by us during our random visiting, (I was just passing and I thought I’d look in on him), (we have a right to review him whenever we want to).
      The regular secret review routine was laughable….. No paperwork. No real records until a formal review was undertaken at which times we were notified in a similar way to yourself. We always attended.
      Almost every observation made by the lone NHS reviewer was answered with something like….. ‘and this care is within the remit of a social services department to provide, is it?’ (After their obvious answer). Followed by something like ‘and how does that need differ from what you are already paying for?’
      The sneaky unannounced visiting was done as a type of spying with a view to discovering an upswing in mood, temperament, and so a (obvious only to them), lessening of needs and so that they could pass the word in their office and shorten the time and so formally review and then rapidly move up the annual Multidisciplinary Team review of his needs to try to save money.
      What in fact happened was that my Father in law thought that it was an unknown carer or nurse asking him questions and in line with the ‘mustn’t grumble’ ethos of many older people, he of course gave a false impression of his needs. I asked the nursing home what was going on and they claimed that they knew nothing about these ‘unofficial’ visits and that the reviewing nurses were supposed to be ‘looking in’ formally on certain patients (who had been notified) and not other people at random.
      Like so many people believe, (and have suffered), these people from the NHS will use almost any methods to get their own way in this matter.

  21. Angela Sherman 2 years ago

    Thanks to all of you for posting your comments here – they’re really useful for everyone gong through this horrible Continuing Healthcare funding battle. With the results of the General Election today, it’s unclear at the moment what moves the next government might make in (possibly) changing the rules about care funding, but we’ll publish updates and info as soon as things become clearer. Governments tend to focus on social care, though, rather than healthcare – quite possibly because they don’t actually understand the difference between social care and health care! But with the gradual dismantling of the NHS, anything could happen. We’ll keep ahead of that. Please do keep your own comments coming – we really appreciate all your contributions to this page and to our blog as a whole. It’s invaluable. (We just ask that you don’t copy and paste your own correspondence into this comments section – because it’s your own insights, tips and experience that an really help others, rather than actual correspondence to and from the health and social care authorities. Thanks for your understanding.) Stay strong, hang in there and keep going if you can. These two articles may also help: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/ and this one http://caretobedifferent.co.uk/nhs-continuing-healthcare-keep-going/

  22. coodie 2 years ago

    Question for Chris G as he has been in this situation. Local Authority (LA) debt now in hands of bully boys debt collectors. LA now not minded to wait for arbitration process 3 years on, which is now proceeding to Independent Review Panel (IRP). Local Review have agreed just 6 weeks despite the needs have been unchanged for the entire review period. LA say WE have to prove we don’t owe fees and demand copy of outcome report at local review which we have refused. Bully boys have threatened a preaction disclosure hearing. The report states false info, a name of another patient (which calls into question its validity if it is confusing our relative with another) and lacks any reference to any social need whatsoever. LA have now waded in wanting to look into the assessments etc themselves. Are we really at a position where we have to prove incorrect facts and a primary healthcare to the CCG and the LA separately causing no end of correspondence, not to mention the LAs complete lack of understanding of the CHC process? (CCG not being much better though.) Help required is an understatement here!! Must say though wouldn’t be this far without this website.

    • Chris-G 2 years ago

      If the matter remains unresolved, then how can a court even sit in judgement? How can they resolve a dispute that must be handled within the National Framework?
      You would not be allowed to go to court until the entire Continuing Healthcare (CHC) appeals process had played out…… Why would the council get any better treatment? They might claim the right under CRAG but you also have the right in a court to demand the appearance of the CCG and their CSU because they (as it is unresolved), might actually need to pay for the care instead of you. Do that and the entire CHC assessment and the route to the decision is open to a real judge and not just the biased, worried for their jobs (and so, compliant with demands from budget holders), assessors. For example; CHC assessors never want to compare needs with Coughlan and her co-claimants, nor do they often consider the legal limits of a council to provide the care because they trap themselves within the main part of the Decision Support Tool (DST) and it’s requirements. As such, a court would have to allow legal precedents such as Coughlan to be included or they would be subject to appeals.
      Why would they want you to send them the appeal outcome when they usually claim to work so closely with the NHS in these matters. The appeal outcome could change their legal position to provide or not provide care without them knowing it, or so it seems, because the NHS has not told them????? Not much care being taken there of either the money or the need to comply with the law.

    • Chris-G 2 years ago

      If they are writing to you claiming money regarding someone else then feel free to ignore their letters. You could call their help line and tell them in as confusedly a way as possible and log the call and names etc. in case court is eventually the outcome.
      You might do this to emphasise their foolish practices. e.g. I called our helpline to inform the Council of the death of my FiL (Feb 1st ish 2016) apparently social workers can provide and recharge for care for a man suffering and dying post operatively from Liver Cancer. The council were still paying the nursing home in August 2016 and billing us for his care. (Not statements but regular monthly charges for up to date care). That is after they stated that all accounting was carried out properly and accurately by their limited company subcontractors during a fight over data and it’s uses not a few months before his death. I was told by these Ltd company idiots that all accounting data was ephemeral and as such was not organised in such a way that it could be presented to me under a ‘subject access request’. An obvious lie and an offence under the Fraud Act (False Representation In A Financial Matter), and the Data Protection Act too.
      I had of course been attempting to have all of my mother’s data expunged on the grounds that they should not even have it; her having ‘won’ again(3rd time) at an IRP. They knew what I was up to and just did not want to play ball.
      After all the next time that they need the data when the CCG refuses to continue matters, it is already there for them to start billing without making a further financial assessment. As such they already know the finances of my mum (and previously my FiL), so that puts them in breach of the National Framework because they are not entitled to store the data or to process it until they actually agree to take on the care costs and the NHS actually wins all of the appeals and potential court cases. If you want a laugh and to get to sleep quickly, have a look at CRAG…… Like I wrote earlier; this process is deliberately complex. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/301250/CRAG_34_April_2014.pdf

  23. David 2 years ago

    Hi, I’ve just been advised we have been successful in our application for Continuing Healthcare (CHC). We are considering ourselves very fortunate to gain acceptance at the first attempt and very relieved to have the issue resolved. I cannot thank Angela Sherman and the contributors to this site for the information and support available enough. We now have the task to find the best Care Home possible. One point I’m not completely clear on is how we determine the Rate we will receive and how they are applied / accepted by the home ? I’ve been advised recently by a Social Worker ‘oh they won’t accept CHC rates’?, any advice greatly appreciated. Regards, David

    • Chris-G 2 years ago

      Great news David,
      If you contact the Continuing Healthcare people they should be able to point you in the right direction regarding Nursing Care Homes and your rights regarding care visits etc., if you want to keep a patient at home. Either method should take into account the care plan that the NHS should have created by now. If you as representative, doubt that the care plan is extensive enough then it is an idea to gently (at first), challenge the plan with constructive observations and additions. This will ensure to a degree that they find it harder next time to remove the funding due to the patient ‘settling’ and therefore not having as many needs for nursing care…….
      ‘Settling’ is of course, a sign of well-met needs but they seldom agree with that logic at assessments and local appeals.

    • Chris-G 2 years ago

      Also David,
      If they have not already passed a copy Decision Support Tool (DST) to you and a copy of their reasoning in making the positive decision, please ask them for it. If they won’t send it to you then get it sent to the patient at their last or proposed new address. They were supposed to send it along with the refusal/acceptance letter but CCGs often fail to do this……. The reason that I was given was that so many people were not at home to sign for the registered delivery…….. There are receptionists and nurses aplenty in nursing homes to sign for letters, so it does not explain how CCG admin staff are complying with their expectations to assume that all patients have cognition sufficient to make decisions. (And as such, to be able to read their own correspondence).

  24. mark loseby 2 years ago

    Our saga continues on so many levels it is difficult to know where to begin.
    You might recall at our predetermined Multidisciplinary Team (MDT) meeting in 2015 the CCG sent along the head of appeals to sit in on the meeting. This was challenged by us but we were told the meeting was happening with or without us present.
    We watched this person take notes (sat opposite us) for 3 hours. As part of our long drawn out complaint and appeal process the CCG eventually agreed to an appeal meeting with this same person deciding if the appeal would be successful or not.
    We cried fowl and said no way was this happening as the conflict of interest was so obvious it could not be allowed to happen.
    After 15 months they agreed to a resolution meeting without this person running it. As part of the meeting we were told it is common for the head of appeals to attend MDT meetings and we should not be doubting this professional’s integrity. Obviously we did not believe this and through a freedom of information request we found this person had only attended 1 MDT meeting in 12 months…ours!
    Based on this we requested this person’s notes from the MDT meeting. This was refused and we then requested the notes via FOI request. The response is that this person uniquely attending 1 MDT meeting as head of appeals in a year took no notes! Remember we watched these notes being taken!
    Our formal complaint launched 12 months ago has been delayed 4 times for a variety of ridiculous reasons and the 5th extended deadline has again been missed. No communication from patient services (LOL) It is left to us to beg for updates.
    All the CCG board have been copied on all written communication but all have refused to answer back to us.
    The fight continues!!!

    • Chris-G 2 years ago

      Mark, Contact NHS England. Ask for an Independent Review Panel to hear the case, on the grounds that local appeals are delaying matters unduly. That is a legitimate ground to miss out the local process.

    • Meggie 2 years ago

      Mark, If I had not experienced what it is like to deal with CCG staff in relation to Continuing Healthcare (CHC) your story would shock. These people are NHS employees, public sector employees, our public servants, paid for out of tax payers money. The lack of transparency, lack of professional behaviour, overall incompetence, lies … Why is this kind of behaviour allowed? I simply don’t understand why families like us are the only ones who know – or care – what is going on. From conversations even with people I regard as friends the general attitude is a shrug of the shoulders and something on the lines of ‘well… your parents can afford it, they’ve got a house, what’s the problem?’ People think CHC is just a few people trying to get out of paying for something they can afford to pay for. The fact that in the UK healthcare is free and this free care is denied just because people are old seems lost somehow. I despair of ever reading an accurate story anywhere in the British media. I wish you luck with your appeal. We will face the Multidisciplinary Team (MDT) at some point in the next month or so but I have little faith we will get legal compliance. No-one has my dad’s best interests at heart other than us, his family, which is dreadful when you consider these people nurses and social workers have codes of conduct that require just this.

  25. David 2 years ago

    Hi, does anybody know what the next steps would be if my Mum who is currently in Hospital fails with a Continuing Healthcare application, she has been diagnosed as requiring 24hr EMI care. I understand the responsibility will then pass from the NHS to Social care, I’m unclear on whether she will be able to stay in hospital until we appeal the decision or we will be ‘forced’ to find her a place in the community whilst an appeal is ongoing? any support / advice will be appreciated. Regards, David.

    • Richard 2 years ago

      Despite immense pressure, including local authority (LA) threatening indirectly to take our children into care, this is how we are currently playing the game. (18 months on). Mother in law’s care would be similar in hospital room / nursing home room or her own home /( staffing being a given). Being careful not to refuse to leave hospital (eviction proceedings) is important, requesting her to be discharged in line with the Couglhan judgement with a safe legal POC puts the emphasis back on the authorities.
      https://www.youtube.com/watch?v=HrpFLLwGqhs and http://www.lukeclements.co.uk/lecture-series/ compliment the resources on here.

      • David 2 years ago

        Thanks Richard, very helpful.

    • Richard 2 years ago

      Perhaps interesting irony if she requires / is diagnosed as “24 h Elderly Mentally Ill” care that of course cannot meet either the incidental and ancillary test nor the of a level that a local authority (LA) can be expected to provide test as laid done in Coughlan and enshrined in the framework.

      34. Should be no gap in the provision of care – thus someone beyond LA limits (‘incidental or ancillary’ & ‘nature of social services’ tests) must be found eligible for Continuing Healthcare.
      { https://www.england.nhs.uk/wp-content/uploads/2015/04/qck-ref-guid-chc-nat-framwrk.pdf}

      • David 2 years ago

        Thanks again, much appreciated.

    • Chris-G 2 years ago

      The question of this demanding that patients be admitted to EMI facilities for care does my head in. Simply because the Coughlan decision was resolved in the judgement with the words :-
      The Care Act
      27. To ascertain whether local authorities can provide any nursing services as part of their care services pursuant to their Part III responsibilities it is now necessary to turn to the third of the trio of sections, namely section 21 of the Care Act. The section provides:

      “(1) [Subject to and in accordance with the provisions of this Part of the Act, a local authority may with the approval of the Secretary of State, and to such extent as he may direct shall, make arrangements for providing] –

      (a) residential accommodation for persons [aged eighteen or over] who by reason of age, [illness, disability] or any other circumstances are in need of care and attention which is not otherwise available to them;
      ………. Further down……..
      (b) Under section 21 the primary service provided is accommodation. But the express reference to age, illness and disability as being among the characteristics of the person who is seeking accommodation, which amount to a qualification for the grant of the accommodation, indicate that in many cases there is likely to be a need for nursing services as part of the care provided.

      The authorities argue that the need is for a certain type of accommodation in which to receive nursing care (not just registered nursing services), but they fail to note or inform that the person does indeed often have a family and accommodation in which, but for the authorities requirements, they could reside in and receive their care in. Of course, requiring NHS doctoring and nursing on a daily visiting basis is very expensive due to the time taken in travelling. So the authorities attempt the move to EMI nursing homes and then downgrade the needs so that the patient pays for the NHS healthcare and family based nursing and minimally paid private care that they could have had at home for considerably less than the cost of EMI nursing homes. As such, if the authorities demand that they move to better receive care, then they have already lost the argument regarding intensity, complexity, unpredictability and continuity as regards the patients needs. It is obvious that having moved them, the needs will become less complex to meet…… That is of course, a series of well met needs when compared with meeting them within the accommodation that the patient already enjoys.

      There again, another section of the judgement notes:-
      NHS Trusts, or other providers including the nursing home concerned. Health Authorities continue to have the power to enter into a contractual arrangement with a nursing home where a patient’s need is primarily for health care. Such placements must be fully funded by the health authority.”
      There is no argument that most people/patients already have accommodation in which to receive care……. Ergo if they need to be removed from their own home to EMI care homes, because of illness, then their care and accommodation remains the entire cost of the NHS, described here as the health authority.

  26. David 2 years ago

    Good Evening, following completion of a Continuing Healthcare Checklist I’ve pursued CCG to advise dates for Multidisciplinary Team etc but have been recently advised the Checklist is ‘not valid’ because my relative is not ready for discharge? I’m not aware that this was a requirement and is not consistent with advice or my experience to date. I’ve read the guide and cannot see this as a condition of a ‘valid’ checklist? I will be checking with the Hospital on what may have changed that may prevent discharge because they have advise on previous occasions it was possible? Any advice on the link between discharge and ‘validity’ of Checklists much appreciated. Regards

  27. David 2 years ago

    Hi, I would appreciate some advice please, my Mum has been in Hospital now for 6 weeks and we have just had the Nursing assessment and Continuing Healthcare (CHC) checklist completed this week. The recommendation is that Mum will require Nursing – EMI care. I have sought lots of advice on how to approach the CHC process and most advice seems to indicate I should push for an on ward CHC assessment and the Multidisciplinary Team (MDT) should take place before Mum is discharged. Both CCG and Social Worker are continually advising this isn’t ‘normal procedure’ and we should agree for Mum to go into a place in the Community which is described as a ‘step down bed from the acute hospital’. Whilst this will be funded I am reluctant because I understand my chances of a successful CHC application will be diminished once Mum has been discharged. I sought advice from a firm of advisors who also stated this shouldn’t be considered a risk on the application and on ward assessments don’t have the same success rate as a community assessment ?. Any advice or benefit of anybody’s similar experiences will be greatly received. Regards, David

    • Richard 2 years ago

      Be interested in what evidence advisors have for ward vs community assessment. Our view is stay put its the only leverage individuals have; many have trouble getting CCG to return calls far less do their job once out in community. Whole process could be completed in 14 _ 28 days if they put their mind to it and the thing that focuses their mind is cost of staying in hospital.

      • David 2 years ago

        Thanks Richard, your recommendation is consistent with most advice I have received to date. I’ll proceed on this basis, looking further into this particular ‘firm of advisors’ raises conflict of interest concerns. Thanks again. Best Regards

        • Meggie 2 years ago

          I can’t comment on your particular situation. But from my experience with a firm of specialist advisors who claimed great expertise but turned out to know less than I did beware what they say. They may be less knowledgeable than they claim. The firm I used didn’t even know how to get the CCG to carry out a checklist (through a needs assessment under the Care Act for example) and when I encountered obstruction and unlawful behaviour from the CCG and NHS nurses they were helpless and said there was nothing they could do. All they did was map care needs from medical records to the DST. And they requested only one set of records from one hospital, no mental health records, no police or ambulance records etc They knew nothing about the law. And since the CCG would not even carry out a checklist let alone a full assessment with DST their so-called expertise was completely useless as well as expensive. They were no better than the legal firms who ring people at random and promise to chase compensation after road accidents. They are only interested in your money or potentially lucrative care home refunds and if your relative is still in hospital there will be no fees to reclaim and for them to take a huge cut of. They have no interest or concern for your relative. Don’t assume they do. The firm I tried sounded very concerned and sympathetic when I first rang and quickly asked for money. Since then even getting them to reply to emails takes days and when I have rung with a desperate plea for help and advice for what to do about unlawful behaviour by the CCG they have nothing to say.

          • David 2 years ago

            Hi Meggie, thanks for the reply, I am approaching this type of advice with caution hence my question. Thanks for sharing your experience it certainly helps. Regards

  28. Meggie 2 years ago

    I am crying as I write this because I began crying when I was speaking to my father’s GP and now I can’t stop. The stress and strain is too much. We are not fighting for care home funding like many on this site, just for support to keep dad at home where since March last year we have provided full-time care simply because we have no choice. To withdraw care would lead to his death(this is not melodrama but the simple truth as my father depends upon us for his every need) and yet to move him to a care home would be no better. He views care homes as dumping grounds for the unloved and has held this view since the 1970s and since developing Alzheimer’s clings to it in the form of an irrational fear of being abandoned. A care home would kill him and he would die of despair. The GP was explaining after three weeks of phone calls between him, myself and the practice manager that to attend the MDT meeting was impossible because a locum would need to be paid to cover his surgery work and paying locums comes out of the pockets of himself and the other practice GPs and locums were expensive. I broke down. It has taken since March last year to get the CCG to finally run out of excuses for not assessing and it will be a waste of time. Even with the doctor there I am not hopeful (the CCG has acted unlawfully for over a year and raising the fact as high as board level has made no difference. The CCG knows I am powerless). Without the GP I know it is hopeless. I found myself sobbing down the phone that I would pay for the locum if only the GP would agree to attend. He didn’t.

    • Shirley L 2 years ago


      My thoughts are with you at this very stressful time for you .

      We looked after our mother, who had Alzheimer’s and heart failure , at home for four years .eventually things became too difficult and we did have to find her a care home, but I must say that she was very well cared for. There are some good care homes out there. I really don’t think anyone fully understands the problems that are associated with Alzheimer’s unless you have had personal experience . I fully understand your stress and the fact that getting help is a constant battle.

      This whole situation is nothing less than a national disgrace .

      • Meggie 2 years ago

        Thank you for your kind reply. I am not coping. The callous indifference of NHS staff is too much.

        • Richard 2 years ago

          We are stronger together. If you need help and advice just ask

          • Meggie 2 years ago

            Richard, Thank you.
            Please could you explain what you mean by “members of the CCG”. I thought GP practices were like private businesses. If GPs never attend Multidisciplinary Team (MDT) assessments for Continuing Healthcare (which is what the CCG have told me) why is that, other than money, which seems to be the sticking point for my father’s GP practice (they don’t want to pay a locum)?
            Since I have no chance whatsoever without the GP’s input I plan to put my request for the GPs attendance in writing. It will list all the numerous health problems, physical and mental, and need for 24 hour care and fact that a nurse and social worker who have never met him will describe his healthcare needs as mere social care if a doctor is not there to put them right. Will quote National Framework regarding need for an MDT that includes professionals with knowledge of health and care needs ie my father’s GP.
            Plan to end by pointing out that the practice says the GP CAN’T attend when in fact he could and that to refuse would be regarded as “a fettering of discretion”, something of which the courts would take a dim view.
            If anyone has a view or suggestions on this course of action please reply.

    • Richard 2 years ago

      of course important to remember every GP (also technically patients) are members of the CCG and may have a conflict of interest

    • Richard 2 years ago

      BMA Advice on GPs confilcts of interests

      “All GP practices are required by law to be a member of a CCG. Changes to the GMS contract regulations in 2013 made it a contractual requirement for all GP practices to be a member of a CCG and also for every GP practice to nominate a practice representative to liaise with the CCG. CCGs are statutory bodies and the CCG constitution is a legal document that practices, as members of CCGs, should ensure they have read and understood.

      “CCGs are membership organisations, accountable to member practices. A CCG must ensure that its constitution outlines how it will discharge its functions, elect subcommittees and make decisions. Importantly, CCGs have a statutory duty to ensure that these processes all ensure the effective participation of member practices in the exercise of the CCG’s functions as outlined in the CCG constitution (Health and Social Care Act, Schedule 2, paragraph 6). This means that practices can challenge a CCG if they feel that the CCG is not fulfilling its statutory duty to ensure effective member participation. For example, the constitution should include electoral procedures and how member practices can remove a CCG board. Practices should ensure they understand how they can hold their CCG to account and get involved in the decisions of the CCG.

      “The constitution may also include responsibilities of practices as members of the CCG, for example, the meetings that practice representatives are expected to attend. It is important that practices understand these responsibilities. It is also important that practices ensure that these responsibilities are reasonable and within the remit of the CCG. For example, the constitution should not require practices to undertake any unresourced activity for the CCG. The constitution should also not contain any clause or requirement relating to contractual responsibilities of GP practices in respect of core contracts.
      “What if I am concerned that the CCG constitution conflicts with my GMC duties?

      “Your primary duty is always to the care of the patient. If you are concerned that clauses in your CCG constitution conflict with your duty as a doctor you should raise your concerns with your LMC and make the CCG aware. You should then follow the process outlined in your CCG for requesting changes to the CCG constitution.”

      • Meggie 2 years ago

        Richard, Thank you for the information, explanations and links. I spoke to Jo Taylor the BBC journalist about my expereicnes with the NHS/CCG. Sadly as I do not live in her region she cannot use it but plans to pass on my details to the BBC in my area with the hope that when her programme goes out there could also be regional BBC programmes/local radio programmes and BBC website coverage of Continuing Healthcare going out all over the country. I urge people who use this website to contact Jo so their experiences could be used as case studies in their BBC region.

      • Chris-G 2 years ago

        It was a sneaky way Richard, of bringing the GPs into the fold so that privatisation (in whatever shape) is more practical and profitable for external providers to bid for and then undertake. After all if GPs were external as previously then private providers could not take over their functions along with CCG and Hospital Trusts.
        Now the complete package is easier to take on and profit from.
        Just my opinion, but it has been the steady intention of many current Parliamentarians since they cut their teeth as junior execs in mainly American health insurers and sponsored think tanks over 30 years ago. I suppose that getting your claws into a £100 Billion a year market is well worth waiting for.

        I can tell that you doubt what I write…… Explain the means tested health care that already costs my mum and council taxpayers, over £40,000 a year? Then have a look at :-


        And then doubt me some more.

        My comment is not party political. I don’t subscribe to any particular political party. But comments like this seem to completely mislead or to miss the point.

        • Richard 2 years ago

          apologies Chris don’t disagree at all ;

          was simply highlighting the conflict (or not) of interests with GPS and CCGs

          • Chris-G 2 years ago

            Sorry. ….. The doubt bit wasn’t aimed at anyone as such Richard, sorry for the implication…. It was a rhetorical remark for general doubting perhaps visiting readers….. Most of us on here would doubt little even if at times what is posted, still horrifies. All the best…….. Chris.

          • Chris-G 2 years ago

            Not your comments mentioned, but those of the BMA that you quoted. They are similar to many others that mislead and muddy the waters.
            It strikes me that many senior people are clinging by their finger tips to power and wealth in the hopes that they get yet another year’s salary before being knocked off and if that means muddying the very obvious attempt of government to abandon the NHS and us, to so get paid and they doubtless do it.
            After all there is no financial or prison sanction for senior people anymore and other than losing face and a job worth 10 times the average or more, they lose nothing having gained 10 years salary for every one that many others earn, if you get me? Well worth the slight risk to a career, if you ask me.

          • Richard 2 years ago

            Cheers Chris. Thought it might be but would always prefer to apologise, (if only the nice CCG folk thought like that!) lol

          • Chris-G 2 years ago

            The reasonableness of most people is what the very senior fingertip clingers rely upon, that and some slippery words, complex procedures and very long appeals and complaints processes that some people have taken five or more years to resolve….. Many other professionals would suffer severe sanctions and even jail time for such similar failings in doing things wrongly.
            My (private industry) job description for instance, is detailed within an act of parliament and errors or deliberate neglect can see me going before a public enquiry, even for someone else’s failings simply because I am so supposed to be in charge, honest and to do this whilst maintaining my ‘good name’.
            I don’t have to be fired, the process under which I work requires me to cease working anywhere within my profession if I lose my ‘good name’…… That simple…….. Unless of course, the courts get involved too and then massive fines and prison can follow on.
            So why not these cossetted, often overpaid public employees too?
            (Many NHS Directors earn much more than someone running this country, it’s treasury or it’s military; and for their errors or ill will, we can get rid of them every five years).

      • Meggie 2 years ago

        Richard, An interesting read about GPs and CCGs. My father’s GP practice has declined to allow my father’s GP to attend a Continuing Healthcare (CHC) assessment meeting. I pleaded and tried over and over to get them to change their minds. Eventually they got back to me to explain that the GP would not be attending because it was not contractual to attend such meetings. As such attendance is not funded/remunerated and the practice itself would have to stand the cost of paying a locum to cover the GPs time. This the GPs at the practice were unprepared to do. My father has been a patient at the practice for 60 years. Hard not to feel that making it personally expensive for GPs to attend these crucial meetings is deliberate on part of CCGs who do not want genuine medical opinion presented in case it conflicts with subjective judgement of their Nurse Assessors. Practice has informed me that CHC team have told them what information to include in a medical report to send instead of attending meeting – they have asked for diagnoses, prescriptions, treatments but have not asked for information on care needs. I have no faith the assessment process will be fair in any way.

        • Chris-G 2 years ago

          make a ‘subject access request’…. Or in the case of GP surgeries, a request to collect the entire record of your father. You can simply read the record on appointment and then request copies of relevant documents if that suits. It should not cost HIM NOT YOU (unless you want to pay yourself), about £50.00 maximum. If he has been to one or two local hospitals, then those notes are also available too at a similar maximum cost. Skim the notes and then do it again….. Put them down for a day or two and then do it again and it surprising just how much you will remember and then begin to understand the format and then to be able to make relevant and valid notes. At subsequent Continuing Healthcare (CHC) assessments and face to face appeals such as Independent Review Panels (IRPs) it is very intimidating to take them all with you and plonk them on the desk in front of you and to ask via the chair, a large number of questions about just how much is known about the NEEDS associated with the reported medical conditions, let alone questions such as ‘did you now about his XZXZZ condition?’ followed by ‘then how could you have properly assessed his needs?’

          • Meggie 2 years ago

            Thanks Chris, good advice. I have some hospital records obtained this way but had not requested his GP records – I have now sent an email and will see what they can send or as you mention make an appointment to view them. The hospital records were an eye opener – incomplete, inaccurate info recorded and then repeated by subsequent doctors and nurses – but my overall feeling was this – what is the point of observations, making notes and filling in charts if at the end of it all you discharge a patient you have identified as in need of 24 hour care to his family and leave them to cope alone just because the patient is very clear he does not want to go into a care home and his family have no intention of forcing him to do so against his wishes. I would love to know what, if anything, the many doctors who wrote “For Discharge” , “social issues” and “referred to Community Mental Health Team (CMHT)” actually knew about the CMHT and the services available – it certainly doesn’t offer ongoing constant support to mentally ill people living at home. What exactly did they think would happen to a 90 year old suffering acute confusion, unable to manage his own medications and at grave risk of doing dangerous things without someone with him constantly. No-one takes responsibility.

          • Chris-G 2 years ago

            Hi Meggie,
            The hospitals don’t seem to differentiate between severity of need or the ongoing nature of the care required, when it comes to hospital discharges. This applies for either a return to a nursing home or into one’s own home.
            For example, my FiL was regularly discharged without Checklist, CHC assessment or a changed care plan, solely because he was going back to a nursing home and regardless that the NHS had long stopped paying for his care, the hospital/NHS doubtless believe it possible for social services to provide after care or have not considered that social workers cannot legally provide such raised levels of care without all of this palaver that they regularly ignore.
            Nor do the hospitals differentiate between the type of patient being discharged. To explain my thinking; when I was discharged to my own home and the care of family after surgeries, I was an other wise fit and cognitive patient who did not have any mental health/behavioural issues. As such, the initial intensity of care would decrease in a day or two. With no care/assistance required within a week. The opposite is the case in your home and that is an unforgivable oversight by the hospital/NHS.

        • Richard 2 years ago

          Be interesting to see who if anyone from the practice sits on the CCG.

          • Meggie 2 years ago

            Richard, Chris-G, Thanks. People often use the word establishment to describe politicians/the media/anyone with wealth and power. I feel like I’m up against a different establishment, the so called health care professionals establishment. I have read some of my father’s hospital records. They are appallingly sloppy, contradictory and inaccurate. They are also repetitive with OTs PTs nurses and doctors each repeating the same stock phrases already written by others in his records, repeating inaccurate information. Unhelpful phrases such as “settled” are repeated endlessly by lazy staff. A patient could be dying of cancer and still look ‘settled’ in a bed or chair. Sending them home for this reason would not treat their cancer. With the elderly this is used to prove they have no care needs. In my father’s notes it is clear even from the inadequate records that the hospitals aim was not finding out what had led to dad’s admission – delusional dangerous behaviour – but simply finding a way – any way – to discharge. Emptying the bed not treating or caring for a patient was the aim of everyone from doctors to nurses. They saw no problem with the constant care he needed being provided by family (never asked if we felt able/had jobs/could afford to leave work) and we felt it was deceitful of psychiatrists to feel ‘job done’ by simply writing he was referred to the Community Mental Health Team (CMHT). This CMHT provides no long-term or constant care services. It mainly carries out assessments, arranges for reviews and provides short term treatments of a few days. What did the doctors think would happen to dad if he was left alone to wait for a weekly 15 min visit? Caring families are exploited. They know we will do everything because we are left with no alternative.

        • Richard 2 years ago

          https://www.youtube.com/watch?v=hEwBN873dYE this series gives insight into the social services side of this conundrum

  29. Angela Sherman 2 years ago

    As many of you will know, the Continuing Healthcare Alliance published a report in November ’16 highlighting the ongoing dreadful situation in Continuing Healthcare (CHC). The Department of Health has since said it will reform the assessment tools, including the Decision Support Tool; NHS England has launched a ‘Strategic Improvement Programme’, whose stated aims include engaging the people in CCGs who conduct the assessments, to create positive changes to practice. NHS England also claims to be investing in more robust training for CHC assessors. Not before time, many would say. These could of course all be empty promises, and whether or not any of this will actually make a difference – or even happen – remains to be seen. You can read the report here: https://www.parkinsons.org.uk/continuing-healthcare/report

    • Richard 2 years ago
    • Chris-G 2 years ago

      It will be empty promises if this partial report is anything to go by. It was from my CCG and its CSU within months of the latest (2012) iteration of NHS Continuing Healthcare (CHC) funding was begun. Reviews and alterations were planned then too:

      ‘CHC expenditure exceeding budget for 2013/14 based on Month 5 activity/expenditure reporting. Recovery Group established between CCG and CSU to develop action plan with weekly reporting to Chief Commisioning (sic) Officer. CHC programme board established September 2013 including NCC social care, CSU, FT, & CCGs (joint Commissioning Team & Urgent care). Joint commissioning manager appointed by CCG and Council to lead commissioning of CHC service. Programme of immediate and longer term work agreed with following priorities – Analysis of baseline activity & finance position including review of budget forecast & QIPP assumptions – Development of in year financial recovery actions – Development of proposals to cease undertaking CHC asessments (sic) in hospitals (discharge to assess).’

      Generally, no extra patients were awarded CHC funding compared with previous periods…… So not enough money was allocated in the first place. It was deliberate or incompetence….. Why are these very senior people still in employment unless it was all in the plan?
      Conclusion? Deliberate underfunding with the intention of acting in a way that is budgetary and not based upon patient care needs.
      There again they also stopped doing assessments prior to release from hospitals regionally too. With doubtless many more patients becoming self funders or council supported. It is a fact that my mum and my deceased father in law lost their CHC within this period with no lessening of needs and with my mum regaining it again at IRP.

      I doubt that the shiny faced reviewers of the process will make any real difference.

  30. Linden 2 years ago

    The CCGs have 2 strengths they rely on… 1.we are individuals each battling seperate cases and 2. Most of us will give up if they ignore us or draw it out long enough. What we need is co-ordination and pressure! We need to show how stupid the Decision Support Tool (DST) really is or how it’s being used in an abusive unlawful way. We know it doesn’t relate to Coughlan but that doesn’t seem to matter to them. We know they don’t even apply their own framework correctly and that does not matter . One strength we have is Health Care Needs should be the same across the whole country and illustrating that the DST is hit and miss could help to expose this for the public scandal it is. I would like to know what does the DST look like for someone who either gets Continuing Healthcare (CHC) – or who wins at appeal or Independent Review Panel or Ombudsman. The DST is a mandatory form so we all have one. Maybe if your relative is in a home or you’re part of a group you could get in contact with people who have got CHC and ask for the DST results – we don’t need any personal information just the scores. Anyone interested in pooling our information?

    • Richard 2 years ago

      Freedom of Information (FOI) request to local CCG will get this data.

    • Meggie 2 years ago

      Linden, Jo Taylor a BBC journalist mentioned on CTBD by Angela is hoping to make her local story (one family’s experiences of CHC) into a national one. I hope to speak to her next week but any coverage that results will have more impact if several people, not just one or two families, are involved. A small number can look like just a few rogue NHS staff or one or two CCG’s getting it wrong and is easy to dismiss. Many, many families with almost identical stories of unlawful behaviour is harder to ignore.
      Angela, could you post Jo Taylor’s contact details again? Thanks

      • Angela Sherman 2 years ago

        Are you or your loved one at the start of the NHS Continuing Healthcare application process? If so – and if the person you’re applying for is still at home (not in a care home) – the BBC wants to follow your experience. If you live in the Eastern region (Beds, Bucks, Herts, Norfolk, Suffolk, Cambridgeshire, Essex, Northamptonshire) then please get in touch with Jo Taylor at the BBC. Email: jo.taylor1@bbc.co.uk. (IMPORTANT! Please don’t post your details here – instead contact Jo Taylor DIRECTLY with your situation.)

  31. Shirley L 2 years ago

    Hi. Everyone

    What really gets me in this whole debacle Is the amount of taxpayer’s money that is being wasted in carrying out this ludicrous process implemented by CCG ‘s throughput the U K. I have been involved in a battle to secure CHC funding for my late mother for four years. The appeals process is both time consuming and costly and completely unnecessary . Why, oh why, do they not then just come clean and say that there is no money in the pot for CHC .
    I have been involved with this process for 4 very long years and our case is now being investigated by the Ombudsmans office however I dread to think how much money has been completely wasted going through the appeals process . Local resolution meeting , local review meeting , IRP etc etc etc.
    I attended IRP in October of last year . There were 8 people in attendance representing the CCG , LA , and IRP panel . This is ridiculous and totally unecessary , and yes they came to the same conclusion as everyone else before them ( surprise , surprise ) that my Mother did not qualify for funding !!! How much money must each meeting have cost the NHS ???? How much money did it cost to have 8 people present and over 1600 pages of care home notes , doctors notes , districts nurses notes replicated for each the panel members involved ?? Surely it would have been less expensive to have awarded my mother some funding in the first instance , for which she undoubtably qualified , instead of wasting money on this pathetic process. Isn’t it about time someone did something about this! After all, we as taxpayers , are all paying for it.

  32. sam 2 years ago

    Hi Hope/ All

    Thanks for replying . Just to clarify , our family member is in a care home which is funded by the CCG in the borough of which he part owns a flat with another family member. Are you saying that if this flat is sold , and another flat is bought in a different borough with his name partly on it , the CCG in the borough that originally awarded the funding, will still be responsible and it won’t fall on the new CCG causing a reassessment , before they accept funding again?

    We just want to make sure there is no change in the funding, if a flat partly in his name is no longer in the original borough , but a new one.

    Thank you so much for your help. Very much appreciated.


    Hi Sam,
    Continuing Healthcare (CHC) is not means tested therefore finance and assets are irrelevant to its receipt. In terms of an individual moving area after being awarded CHC, it is my understanding that the CCG responsible for determining eligibility remains responsible for funding their care. Funding continues to be subject to review as is usual.

    • Hope 2 years ago

      Hi Sam,
      Which CCG pays for funding is determined by which GP surgery your family member is registered with – if he/she is remaining in the care home they are currently in and are continuing to register with the same GP, then the CCG that is currently funding his/her placement will continue to do so. They don’t need to know anything about your family member’s personal finances or property.
      Hope this makes sense!

  33. mark loseby 2 years ago

    Can anyone share any press contacts who are interested in Continuing Healthcare (CHC) funding stories? I know of a guy at the Sunday Times who did a couple of pieces last year but thats about it. I have been struggling to get any interest from the media so far, but that might just be me and some of you may have had more success.
    I have spoken to a number of solicitors about CHC funding and the consensus was for them there is not enough money in it and unlike say medical negligence proving who is right/wrong is difficult as the funding is not ‘protected’ by a defined law which could be used as the tool to get CCG’s to court.
    Again others may have had more success than me on the solicitor front.
    Still convinced the hidden gem is discrimination…What does anyone else think?
    It seems obvious with the volume of stories on here and other social media that the system is totally abused by the bureaucrats and for us to get anywhere we have to do something collectively.
    The million dollar question is what/how we do something collectively?

  34. Judy 2 years ago

    Healthcare has been redefined as social care. I am beginning to wonder that even if your relative is in a coma it would still be classed as routine and therefore social needs. Even at the last meeting we asked the social services rep what the social needs were. There were none that a council could provide since even feeding needed to be encouraged and they were bedbound with little activity . The answer is they would get back to us on that one, they didn’t yet still classed the needs as social??? They will continue to deny Continuing Healthcare until challenged by a Court as they are not to be held to account by anyone else.

    • Meggie 2 years ago

      Judy, You are right. The redefining of healthcare as social care is the crux of the entire problem.My view is that in addition to being unlawful it is also discriminatory as it is discrimination on grounds of age(unlawful) or in somecases both age and mental health discrimination. I wish I knew how to bring a case to court as I am exhausted by meeting unlawful behaviour that I cannot fight. It seems to be impossible to make the NHS act within the law. And finding that you cannot challenge this unlawful behaviour…I have never felt more helpless and hopeless. As you say it doesn’t matter how ill someone is, if they are old they are denied their right to free NHS care and pushed into a” second-rate health system” otherwise known as private, run for profit care homes where instead of qualified NHS staff they receive inadequate care from much cheaper unskilled and underpaid staff. Even better many of them can be asked to pay for this themselves with the council picking up the bill for those who can’t. Why can no-one see that if your care needs are great it is highly unlikely you are fit and well and far more likely that you have a serious illness or multiple illnesses. The ignorance of nurses, who seem to be all-powerful in the CHC system, is shocking. I do not want a “senior nurse specialist” or “lead nurse assessor” making decisions about my dad’s healthcare. I want a doctor (his GP is in no doubt about his need for care) but the CCG organising the assessment also agree GP practices contracts and dad’s GP practice refuse to release GPs to attend CHC meetings…So a nurse who’s never met him will decide my dad’s fate, a nurse who has already informed me the decisions all come down to money…

      • Chris-G 2 years ago

        The trouble with all these pre-election plans for social care funding recently proposed by all parties, is that they have still to legally define ‘social care’ and ‘primary health need’ within the national framework……… Without a definition they are just spouting hot air.
        There again they are terrified to make those definitions because then the matter becomes Judicially Reviewable in the courts if the NHS cheats like it does.
        Once that happens the system would be subject to monthly Parliamentary debates to create new law to try to circumvent the latest court judgement and politicians hate to keep returning to the same issue over and again because it appears that they really do believe in their own infallibility.

  35. Linden 2 years ago

    This whole saga has been a revelation to me….you don’t know about it until you’re up to next in the madness of it. I know there has been some media coverage but it’s been minimal do you think we should assert more pressure and try and raise awareness of the scale of this ridiculous mess ? And does anyone know of any cases which were taken to Judicial Review ??

    • Glynis Evans 2 years ago

      Would anyone be prepared to help with wording for a petition on either 38 degrees or change.org website now that that the one on the government website is due to be removed. Does anyone know which would be best? Thank you

  36. Brian Hart 2 years ago

    I am finding Care To Be Different’s ‘How To Get NHS To Pay For Care – v2.2.1’ very helpful. I am though about to use the sample CCG letter therein . And am querying the ‘I have taken specialist advice ..’ para p99… as I haven’t taken specialist advice yet. I may omit this para for now …. although expert legal resources may be required later I realise…..

    • Richard 2 years ago

      I think of this whole process as a game of poker… occasionally you’ve got to bluff, they certainly do…and the information is via CTBD and the book.

  37. sam 2 years ago

    Hi ,

    Sorry just to add more to my second point. If someone gets Continuing Healthcare (CHC) approved in one borough because their name is on a property , but they sell that property and buy a house in another borough with their name on the property, does this affect CHC in any way?

    Thanks again

    • Hope 2 years ago

      Hi Sam,
      Continuing Healthcare (CHC) is not means tested therefore finance and assets are irrelevant to its receipt. In terms of an individual moving area after being awarded CHC, it is my understanding that the CCG responsible for determining eligibility remains responsible for funding their care. Funding continues to be subject to review as is usual.

      • Richard 2 years ago

        My only caveat is beware the deprivation of assess rules given it is possible at some point in the future Continuing Healthcare will be reviewed and with the CCG’s healing powers many folk end up miraculously better Social services would want to be clear about where the money went.

  38. sam 2 years ago

    2 quick questions

    We have an issue . Our father has a Deprivation of Liberty Safeguard (DoLS) in place but also now has a health Power of Attorney (POA) aswell. I used it to ask for the medication list and the Office of the Public Guardian (OPG) have contacted us to say a complaint has been made. It has been made by the home but do you know about the relationship between having a DoLS and also a health power of attorney . Can someone with a DoLS have a health POA? The home seems to think not.

    Also may i ask , if someone gets continued care in a certain borough, but then they move into a different borough( (perhaps where their care home is ). Does the continued care get transferred to the borough he lives in ? Just didn’t know how it works.

    Thanks very much

    • Richard 2 years ago

      My understanding is Deprivation Of Liberty Safeguard gives them a get out of jail free card about keeping someone at a given location ensuring safety etc.
      Can’t see it would overide POA or the individuals right to see / have copies of their records. Data Protection Act/SRA would be my starting point

    • Chris-G 2 years ago

      POA allows you to act as if you were the patient/person. However, if you yourself were mentally or behaviourally incapacitated, you would not be allowed to make all of the choices available to the public at large. For example, you could be sectioned for your own safety. If a Deprivation of Liberty Safeguard (DoLS) is issued then the grounds have to be pretty well explained and also the needs associated with the undertaking to deprive someone of their liberty. As POA holder, it is my understanding that in making decisions for your loved one, you can only do so within the bounds of the DoLS. However…….. The DoLS is a double edged weapon…… If you have ensured that all of the complexity of needs is included on the DoLS then it has a bearing on the later stages (Independent Review Panel) of the Continuing Healthcare process if you are denied funding. It is common that the NHS will minimise needs to deny funding whilst the council will have to maximise them to obtain a lawful DoLS. The Multidisciplinary Team (MDT) will always dispute that DoLS has any relevance at an assessment solely because they cannot or will not properly read the National Framework regarding DoLS. Which explains that the existence of a DoLS is irrelevant in making a recommendation. However the wording within the DoLS and the reasoning is entirely relevant because it is a relevant document in terms of the assessors remit. To explain…. How can behaviour requiring a person to be locked within a facility or demanding one to one care for the safety of others and them, be minimised and given less than a ‘severe’ score by a MDT when judging the Behaviour domain? It would be somewhat like and the opposite of, a criminal being given 20 years in prison by a court whilst the prison officers themselves let them out because they were not as bad a person as originally thought.

  39. Glynis Evans 2 years ago

    I think we need to set up a petition on change.org or 38 degrees & have it so that it actually goes to the Minister for health. We also need everyone to email their MP’s about this.

    • LInden 2 years ago

      I completely agree – this is an unknown scandal! There is a complete absence of transparency, consistent practice or even adherence to the law . The way these people win is by all of us fighting separate battles and most giving up. It’s a complete abuse of power !

      • Meggie 2 years ago

        What a perfect summing up Linden. Abuse of power, no adherence to law… what other evidence do MPS need to act…except that most are ignorant and those who are not are complicit. The NHS needs more money even though it is currently being subsidised by the savings of sick elderly people who spent all their working lives paying for it. I can’t see why any government of any party would want to tackle the issue – tackling it and preventing the abuse and the reclassification of health needs as social care is saving the Dept of Health a fortune. Since few people know or care and those affected, the elderly, tend to conveniently die eventually, what incentive is there for any political party to take this on? I doubt very much if the infirm elderly people being denied access to proper NHS care from qualified nurses etc (and instead get bundled into profit making care homes as a sort of second class health system they have to pay for) ever get to the polling stations to vote or even have the strength or capacity to request a postal vote. Any focus group would conclude there just aren’t enough votes in it.

  40. mark loseby 2 years ago

    As part of my back and forth with the CCG they sent me a letter today containing the following comment. Not sure firstly where you can get hold of these facts as a document to study, local CCG won’t/can’t supply them and secondly how the figures are worked out based on 50,000 population.

    Any ideas gratefully received.

    ‘The CCG is not an outlier? in funding decsions and is funding at the national average rate per 50,000 population for England’

    ‘It is noticeable that the CCG only had one appeal upheld last year by NHS England. This provides some evidence that due process is being followed in applying the national framework in a consistent manner’.

    Having highlighted in great detail 17 breeches of national framework in our case i allowed myself a smile at this comment.

    • Glynis Evans 2 years ago

      Hi Mark – I have keyed in the keywords “The CCG is not an outlier” into the search engine & it brings up a number of PDF’s that raise this in meetings, including one that goes into much detail about the financial pressures on them & they actually state that that they are concerned about the “pressures” on them from CHC costs…..

    • Richard 2 years ago

      foi request also CCG publish its reports and accounts on its website

    • Chris-G 2 years ago

      This is also a bogus way of assessing quality. If a town with an airport has only one crash per year and a town without one has none, is their none existent airport actually better managed than the town that actually has one? One only has to look at council areas where people go to retire, they obviously require more healthcare for the elderly and that of course should reflect a greater degree of funding by both the council and the NHS……. Statistics…… GRRRRRRRR!

  41. Linden 2 years ago

    Sorry this may be a stupid question and I might have missed something but my understanding of the law is the local authority (LA) have limits to what they must provide as defined by Coughlan, and if the LA decide it’s not social care the law says its automatically health. So why does everyone focus on the CCGs who appear to operate outside the law and use a tool which isn’t compliant? Why not direct appeal /complaints to the LAs and make the LA do the work ??

    • mark loseby 2 years ago

      Hi Linden no it’s not a stupid question. The CCG have to agree that the care is beyond the scope of what can be provided by the local authority ie: it is a health need not a social need. If you have to go through the process you will be surprised/horrified how what you would consider easily definable health needs become social needs in the eyes of the CCG.

      Until a specific law is in place to control this process CCG’s across the country will continue to act with impunity….And they know they can get away with it, that is the crucks of the problem.

      • Glynis Evans 2 years ago

        I totally agree with every word that you are saying Mark. You have summed it up perfectly.

      • jane Barnes 2 years ago

        May I suggest to everyone to contact their MP. I contacted my Mums MP, she died in May 2013 and I was recently sent a letter from the CCG saying “no further action due to cut off date”!! The MP took it up with the Minister and I received a letter from the deputy minister saying that there was no “cut off date and CCGs should continue to process retrospective reviews!!!. I have sent this back to the CCG and await their reply. The MP has asked me to keep him informed and I have advised the CCG of this as well. It will be interesting to see what happens next!

        • Glynis Evans 2 years ago

          That sounds a very good idea Jane, although with a general election looming not sure whether it would be best to contact them before or after. If perhaps we could get a general letter put together that perhaps we could all use to send to our MP’s to try & get something done. In view of the fact that parliament are terminating the petition 5 months early that I set up on the government website, what are your thoughts of perhaps setting one up on the change.org website. Unless we can bring pressure to bear on our MP’s, this will never change

          • Jane Barnes 2 years ago

            Hi Glynis, if the petition isn’t going to happen then everyone should e mail their MPs and when the Minister gets swamped maybe he will do something, who knows,

        • Meggie 2 years ago

          I wrote to my MP last year and pleaded with her to help and she did not even bother to reply.

          • Jane Barnes 2 years ago

            E mail her with a read receipt and keep at it, or vote for another MP!!

          • Richard 2 years ago

            better still go on her facebook page leave a public message

        • Chris-G 2 years ago

          Back in 2012 I visited my mum’s MP for assistance, (he and his wife had been questioned by Police for matters related to CHC himself.). He wrote to the Sec of State for the NHS….. He was never answered and so nor was I.
          My latest correspondence sent to my MP was sent by him to the Sec of State. He sent it to an Earl in the House of Lords…….. Outcome? He sent it to NHS England and they sent it to the CCG involved and they lied about their methods for CHC decision making and then the Earl via the Sec of State and then my MP passed the CCG’s lie back to me with the conclusions rattling around in the several minds, that I was wrong in my assertions….. Job done and all achieved with an uncorroborated and in-investigated lie created by the very people with whom I was disputing. Does anyone in power know anything about how to go about investigations?

      • Meggie 2 years ago

        Hi Mark,
        Your comments, however true they may be, leave me deeply depressed. I will be facing a MDT meeting sometime in May after more than 12 months delay and a gap in care provision that has left family members solely responsible for 24 hour nursing care just to keep dad safe. I was hoping evidence of care needs beyond social care might just work if I could at least get a social worker/the LA acting in accordance with the law. It seems I was being too hopeful because if the CCG have to agree the needs are above the LA limit for social care as well as the social worker I know we will not secure Continuing Healthcare (CHC). The CCG has ignored the law and National Framework (NF) for more than a year and it’s staff have behaved appallingly and unlawfully over and over again from the nurse assessor to the team manager to the Chief Exec who simply dismissed a formal complaint with the untrue statement that the CCG always complied with the NF, when quite clearly it does not and went on to repeat the spurious excuses we had already been given by her CHC team for refusing assessment.

        • mark loseby 2 years ago

          Hi Megie sorry to depress you….
          I originally thought nearly 18 months ago that our situation was unique and that we were ‘unlucky’ to have come across a rogue CCG employee and that ‘good’ would prevail.
          Now we are deep into it and having spent lot’s of time visiting online forums on the subject, we realise that it is a systematic approach from the top down by virtually all CCG’s to deny funding. The principle of deny funding through a long drawn out process reduces the number of people who can cope with or attempt the appeal process. Then the approach is continue to deny funding as the percentage of people who are then able/willing to go to NHS England for independent review is so small that if funding is then granted it is massively cheaper than funding the correct way.
          Our CCG chief executive has ignored every recorded delivery letter/email sent to them directly and 100’s of emails they have been copied in on as well. With that type of leadership it is no wonder our and so many other peoples experience has been so horrendous.
          As to your meeting i can only suggest you try and have it recorded and if they refuse that make sure it goes on record that your request was refused. Take as many notes as you can and if you have documents sent to them previously detailing procedural breaches or poor quality record keeping, present them as a pack to be attached to the meeting minutes.
          Also it is worth having documented in the minutes of the meeting the fact you believe your relative is being discriminated against due to their age/physical or mental disability/faith/ethnicity etc etc. I am sure that at some point this is a hidden gem for us all to use at some point in the future. I always state this on every email/letter sent to any CCG staff.

          It’s a long journey but WE WILL ALL win if we can act collectively in the future…the election might just give us an opportunity. Good Luck on the day!

      • Richard 2 years ago

        34. Should be no gap in the provision of care – thus someone beyond LA limits (‘incidental or ancil-lary’ & ‘nature of social services’ tests) must be found eligible for CHC.
        { https://www.england.nhs.uk/wp-content/uploads/2015/04/qck-ref-guid-chc-nat-framwrk.pdf}

        The first duty is on the LA from the Care Act to determine on which side of the Legal limit one falls , strictly speaking they cannot actually decide if a primary health need exists but…………

    • Richard 2 years ago

      Having been having this exact conversation ;

      CCG appears to tell our LA what to do and the LA does it IMHO it suits all parties CCG doesn’t pay LA doesn’t pay selffunding folk foot the bill till they run out of cash.

      LA doesn’t get sued by CCG/NHS whose pockets are deeper ……

      even when in writing;
      “ needs above the local authority expectation to provide. “ Senior Social Worker

      Social Worker…. “24 Hour a day nursing care …by registered nurses” ….Care Assessment

      LA Solicitor “on the basis that by those heads of need not being met, the health and safety of XX will be placed at real and immediate risk. The assessed need is for nursing care 24 hours. “

      “The Council cannot accept legal liability to fund a care package for what has been identified as a predominant health need”
      “I have personally contacted the Head of Commissioning in the CCG today to request urgent reconsideration.”
      Head of adult social care
      CCG said “no” LA said “ok!”

      They still refuse to challenge the CCG

      • Meggie 2 years ago

        Richard, your comments have pretty much removed the last hope we had that CHC will be granted. If care is actually established and agreed to be beyond local authority legal limits and CCG still don’t act what hope is there? I am under severe strain and my husband wants me to give up because when I saw my own GP about my own health this week she was keen to describe anti-depressants, tranquillizers and beta blockers – FOR ME. She accepts all my physical symptoms are a result of extreme stress and anxiety.

        • Richard 2 years ago

          Sorry really didn’t mean to have that effect but sharing the insanity that sits in this process makes us stronger.

          We are just back from facing down the crack team of the CCG Chief Nurse ,(they wouldn’t let the CEO out to play) CEO from the LA (5 months to get to the table) and Hosp CEO + associated minions riding shotgun;
          and by pointing out the weaknesses of each other cases and letting the ceo’s taste the personal fear of now being summoned in the almost inevitable court case we have the first signs of movement in over 18 months.

          Very powerful tactic reading our aloud (as if before the judge), the minions words in front of the big boss and asking what the judge might do………

          Have a look at the resources below it is this site CTBD and Prof Clements that have kept us going through a barrage of dirty tricks from the LA / CCG tag team that have kept us going but especially the wonderful community on here .
          Angela deserves a “Damehood” for her work.



          • Meggie 2 years ago

            Hi Richard,
            I hope you are getting somewhere in your fight. Please could you let me know what specific issue (in all the unlawful nonsense that seem to characterise the Continuing Healthcare process) you are taking to court?
            To take the individuals responsible for the denial of healthcare to sick elderly people to court seems like an impossibility and yet at the same time the obvious course of action.
            Please keep CTBD informed of your progress if you can. Good luck.

          • Meggie 2 years ago

            The Care Act is describing eligibility for council provided social care provision here isn’t it? . Surely this just muddies the waters as clearly someone with all the needs for care in 3.2 needs far more than social care as there must be a reason/health condition to make them have these needs. And yet 3.2 makes it sound as though these needs prove eligibility for social care. Am I missing something? I have been trying to get across to everyone involved with my father that his needs are NOT social care needs at all but all stem from his psychiatric conditions which impact on his ability to do anything for himself/physical health.

      • Chris-G 2 years ago

        Our local Council has twice in six years failed to hold an agreed inter agency dispute procedure with the NHS. This is a legal requirement to operate the Continuing Healthcare (CHC) assessment process. As such, council staff had no way of appealing NHS decisions that flew in the face of their recommendations…….. They could not even support us under the 2009 version when I showed the council assessor that their recommendation had been altered on the Decision Support Tool (DST) by the NHS and then sent as two versions, their original version to them and the forgery to us.

    • Richard 2 years ago

      Mind the Gap…….
      34. Should be no gap in the provision of care – thus someone beyond LA limits (‘incidental or ancillary’ & ‘na-ture of social services’ tests) must be found eligible for CHC.
      { https://www.england.nhs.uk/wp-content/uploads/2015/04/qck-ref-guid-chc-nat-framwrk.pdf}

      • Glynis Evans 2 years ago

        Unfortunately the way the domains in the Decision Support Tool (DST) are set out & graded goes against much of what the National Framework lays out. The DST is confusing & open to much misinterpretation. It needs completely overhauling, making much more straightforward, but also to encompass much more the complex & unpredictable needs of illnesses such as dementia etc.

        • Meggie 2 years ago

          Glynis, I was frustrated to hear that the petition you started was simply dropped because of the election and would need to be started all over again. I would like to help with a new petition for 38 Degrees but after all my personal experiences with attempting to get Continuing Healthcare (CHC) for my father I feel any petition should simply call for its immediate abolition. The NHS has a legal responsibility for care whether this is a short spell in hospital, cancer treatment or a GP appointment. It is no less legally responsible for the long term healthcare of the elderly. CHC was surely created to avoid providing this not the other way round. Anyone young or old should be entitled to whatever healthcare they need, long or short term if they are diagnosed with a mental or physical illness. There should be no proving eligibility. If a GP or hospital doctor says an elderly person has Alzheimer’s or is incapacitated by stroke or Parkinson’s or anything else nothing more should be needed. If I go to my GP complaining of headaches I do not need to provide some form of evidence that I suffer from them. Nor do I have to prove at the same time that I have behavioural problems, skin problems or breathing difficulties. CHC is ludicrous cruel nonsense. Providing evidence of a care need too open to interpretation. I believe the repeated “it does not depend on any diagnosis…” is the give away that it was designed to deny care not grant it. Virtually everyone with care needs of one kind or another will have a diagnosis of something. Fit healthy people, even when old, do not need extensive care. Abolition of CHC is the only sane answer. Perhaps with the Coughlan judgement enshrined in legislation and a very precise legal definition of “social care” so there can be no mixing it up with healthcare in future. Other than calling for abolition I don’t know what the wording should be.

        • Chris-G 2 years ago

          The words within the Decision Support Tool (DST) domains are for the most part very explicit and the Multidisciplinary Team (MDT) is reminded to observe the needs and chose the correct carefully constructed descriptors in regard to the needs.
          But they don’t do this. They seek to use the lower the wording even if it conflicts with the recorded needs, on the grounds that they can use Professional Judgement.
          At Independent Review Panel (IRP) appeal in 2015 it was agreed that the professional judgement should only apply at the end when making the recommendation and not domain by domain and that to use wording that did not apply to the need was wrong if the higher wording applied.
          If the recommendation was to refuse funding even though perhaps three severe levels were recorded, then of course the rationale and the use of the professional judgement would have to be very carefully explained and they just plain don’t want to leave that door open for appeals…… So they cheat during every domain by using professional judgement in applying the wrong words within the descriptors and that is just illogical.
          As I have stated before….. If a patient cannot give concordance because they lack cognition and that the meds are required to prevent a relapse then they qualify as severe within the drugs domain. Simply swallowing pills when they are shoved in their mouth is not concordance. (See the definitions on the DST back pages).
          It is up to the assessor to justify their lower overall recommendation by explaining their judgement in awarding a severe at any point but then denying the need.

    • Chris-G 2 years ago

      No not stupid at all. But try and get the council to even answer correspondence.
      ’24. Each LA is under a duty to assess any person who appears to it to be in need of community care services (section 47 of the National Health Service and Community Care Act 1990). Community care services may include residential accommodation for persons

      who, by reason of age, illness or disability are in need of care and attention that is not otherwise available to them (section 21 of the National Assistance Act 1948), as well as domiciliary and community-based services to enable people to continue to live in the community’
      The argument is that the need of care etc. is the NHS’s responsibility and not the council’s. Since councils social services came under control of the same Secretary of State as the NHS, it is apparent that they have become a relief valve for the NHS and it’s costs……. But answer me – Where are the council’s hospitals? Where do they keep their doctors and nurses? Try and get the council to fight over this and they simply wont. Twice in the last two revisions of the Continuing Healthcare process, my local NHS and subsequent CCG did not even have an agreed interagency dispute process (required to operate the Framework), in place until I caught them out……. Not once but twice. It took over seven months to get a satisfactory response back in early 2014. Regarding the 2012 process. And many months into 2012 after the 2009 revisions. So why and how could a council appeal in support without the means to do so?

  42. Glynis Evans 2 years ago

    I have received this message from parliament to say that the petition re investigation of CHC process will be closed early on 3rd May . We were at nearly 1000 signatures – I just give up. But a BIG thank you to everyone who signed or helped.

    “Dear Glynis Evans,

    Because of the General Election, the closing date for your petition has changed. All petitions now have to close at 00:01am on 3 May. This is because Parliament will be dissolved and all parliamentary business – including petitions – must stop until after the election. This means the petitions site will be closed and people will not be able to start or sign petitions.

    We’re sorry we weren’t able to give you more notice that this would happen.

    Your petition will be available for people to read on the site even though it will be closed for signatures. Your petition can’t be reopened after the election. You are very welcome to start your petition again when the site reopens after the election, but you will need to collect new signatures. We can’t transfer signatures to your new petition.

    The Government can’t respond to petitions during the election period. This means if your petition has over 10,000 signatures, it can’t receive a response from the current Government after 2 May. After the election, the new Government will have to decide whether it wants to respond to petitions from before the election……

    The Petitions Team, UK Government and Parliament”

    • Shirley L 2 years ago

      Hi Glynis

      I have just read your post re the early closing date for the petition ! Unbelievable !!!! It was going so well too.
      I have contacted my late Mum s MP in the past , but not a lot of help I ‘m afraid . No-one appears to want to know !!!!
      Ombudsman now investigating Mum’s case , which will be interesting to say the least ! I’m still not giving up though .

      • Glynis Evans 2 years ago

        I do so hope that you are successful Shirley x

    • Glynis Evans 2 years ago

      Thank you Meggie – I totally agree with all that you are saying. I worked in a GP surgery for a short time & saw how the NHS worked, with bribes to doctors from particular Medical companies, enforced targets for flu vaccinations, provisos for funding. To be honest to is a shambles & Continuing Healthcare (CHC) is just one of the areas that needs a complete overhaul. It needs to get back to basics.

  43. Jenine 2 years ago

    So predictably the Resolution Meeting was another sham though we were allowed to tape it . Has anyone else gone to Independent Review Panel (IRP)? Why are they currently asking you first to detail hour-by-hour the care needs and complexitity etc. Surely we can’t be expected to know how long each care need lasts including the paperwork connected to it? Should we just have to supply Decision Support Tool (DST) and notes rather than have to complete timesheets? And how does that equate to health care-v-social care principle. Is this another ruse to put people off? Time soon to consider the last option, legal action because at least the judge would have the final say and adhere to Coughlan not the CCG or NHS and their national framework which isn’t even applied correctly anyway. Used to work in insurance, the customer complains by letter in which the insurer has to respond within a timescale, if not happy goes to Financial Ombudsman, why so many arbitrary hurdles with the NHS??

    • mark loseby 2 years ago

      Hi Jenine
      This might help you? We also had a sham resolution meeting and got the predictable letter back upholding Multidisciplinary Team (MDT) meeting. We got a name and address at NHS England if we wanted the independent review but no other information.
      Anyway we have a habit of copy emailing every director of the CCG. This does upset them and we do get responses asking us not to continue to do it…but we do anyway. The beauty of this is no one can say they never knew what was going on and they then cannot blame a rogue employee.
      The result of us doing this and complaining about the resolution meeting and more importantly saying we held the board responsible for age and mental health discrimination, is a response from one of the board arranging another resolution meeting that they will personally chair to and i quote ‘find a way forward’.
      I am not saying we will get the result i want (ie: funding) but at least we are making it very difficult for them with the weight of evidence we have about a pre-determined process, to refuse funding.
      This might not be useful for you but we have also lodged a few freedom of information requests with the CCG to get paperwork they say we can’t have and other things relevant to the case. Might be another avenue for you.
      Finally we also complained to the council’s director of adult care who is arranging a meeting as well.
      We have just tried to throw as much muck to the wall as i can to see what sticks…Hope it helps.

  44. mark loseby 2 years ago

    Regarding the petition started by Glynis we seem to be stalling a little now in terms of new signatures. This morning we are at 786 signatures. One of the issues i think is trying to explain what Continuing Healthcare (CHC) funding is in a couple of emotive sentences that will resonate on social media.

    If anyone can help coming up with this ‘phrase’/sentences i would be grateful. I am planning to hit twitter/Facebook again in the next couple of days to try and boost the numbers again.

    Interestingly only one of the charities who ‘support’ elderly issues liked or shared the petition the others ignored it. This might be because they also don’t understand in any detail what CHC funding is all about…We know NHS staff don’t understand it!

  45. mark loseby 2 years ago

    This morning we received our letter following the local resolution meeting held 2 weeks ago. Having waited 1 year 2 months for the meeting all we got was a six line letter saying the original denial of funding at the Multidisciplinary Team (MDT) meeting was upheld.

    No mention of the 17 breaches of the national framework detailed to them at the appeal meeting. Not mention of the incomplete and innacurate medical reports detailed to them at the appeal meeting. No mention of the conflicts of interest by having the head of appeals at the original MDT meeting, who refused us permission to take any notes.

    The only good thing from the appeal meeting is the minutes they provided detail everything we brought up or gave them in written format.

    As we said on the day and was noted in the minutes, the meeting was a complete sham from begining to end.

    On every communication i do with them i point out they are discriminating against the patient due to his mental health condition..even this does not bother them. It is like Dodge City in the wild west!

    • Glynis Evans 2 years ago

      So very sorry to hear that Mark. we had exactly the same. They appear to be a law unto themselves 🙁

  46. Maggie 2 years ago

    My Mother had vascular dementia and after suffering a bad fall the hospital gave her a borderline Decision Support Tool (DST) verdict for Continuing Healthcare (CHC) funding before her admittance to a nursing home, which I appealed. A month later the appeal gave a second borderline DST and I was told she would be assessed again in three months’ time (as I believe is the regulation). In the whole 18 months she was in the Home no one came to assess her (without which I had no chance at all to secure funding) despite both I, and the Nursing Home phoning the NHS regularly to ask them to come. The Nursing Home was adament she should be awarded CHC. At long last someone arrived and immediately fast-tracked her. A month later she died. I asked for a retrospective review which has just been completed after a wait of 33 months. Amazingly her health was judged to have improved beyond recognition so she was even further from eligiblity tham when she entered the Home. I feel because she had had two borderline assessments that they wouldn’t do another as they were afraid they would have no alternative but to provide funding. Any tips on how to handle my next appeal please?

    • Diane Potter 2 years ago

      My mother also had Vascular Dementia and Parkinson’s Disease, with my sister and I having Power of Attorney (POA). Prior to a hospital admission in Oct 2015, mum was living at home with a twice daily Package of care and her needs were social needs. On admission to hospital she also developed a delirium which never resolved, her condition deteriorated, she was deemed to have rapidly progressive disease, and it was deemed that she needed nursing home care and we were told to apply for Continuing Healthcare (CHC) funding – with no effect. In March 2016 she fell at the NH and sustained a fractured neck of femur and was hospitalised for over a month – we were told to re-apply for CHC funding. The Checklist was done by the NH in April 2016 and then the long wait began – we have a long timeline of phone calls, emails etc to the CCG all of which remained unanswered or phone calls not returned, or there wasnt an assessor available, or a social worker wasnt available. My mother, sadly passed away in January 2017 and 10 working days after the CCG sent two nurse assessors to do the Decision Support Tool (DST), as that was the first time they were free! – we were not made aware that the assessment was taking place but received the report stating that my mother had no health needs and that Next Of Kin had declined to attend. This heralded my first complaint which was treated with amusement by the service manager. The DST was re-done at my insistence with my sister and I present and yet again deemed that my mother had no health needs despite, severe and high scores and a demonstration of nursing needs and a report showing progressive disease which was even written in the DST report. I have now started the process of contacting the ombudsman. The funding is now immaterial but the process and the subjective interpretation on behalf of the CCG needs exposure. I am also considering exposing to the press. I wish everyone the best of luck with their disputes – I think together we can get this exposed and would happily be part of a panel of families to address this.

      • Glynis Evans 2 years ago

        So very sorry to hear about your mum Diane. It is enough to have to cope with trying to ensure that your family member is receiving the best care & attention at their time of need, without having to cope with all the stress brought about by trying to secure funding. I wish you all the luck in the world with contacting the ombudsman x

        • Diane Potter 2 years ago

          Thank you Glynis

      • FRB 2 years ago

        Do ask the ombudsman to find out why you were not told about Fast Track. That would have secured funding within 48 hours.
        I sent Richard’s link to Professor Luke Clements wonderful lecture on Continuing Healthcare to the line-manager dealing with our case. All CCGs should be made to listen to it!
        Good luck with the ombudsman.

        • Diane Potter 2 years ago

          Thank you – I watched the lecture last week – I agree all CCGs should be made to watch it

  47. Sue Hickman 2 years ago

    Please can you advise. I have no POA for my Mum. TBH my mother has not been right mentally since the sixties & even when I tried to convince her to have it in the nineties she regarded it as a waste of money. First let me tell you there is no house, no savings, no assets. All she has is her pension & they take a massive chunk of that & I truly believe she should not be paying it. She was sectioned in 2009 & spent a year in a NHS psychogeriatric unit & then discharged to a residential home with dementia care.Of course she has got worse & worse & is now in final stages. My question is will & can social services tell me that I cannot fight any NHS continuing care case for her as I have no POA? I feel utterly helpless. Thank you

    • Hope 2 years ago

      Hi Sue,
      Was your mother detained under Section 3 of the Mental Health Act? If so, she should have been entitled to S117 aftercare – funding for which is a split responsibility between both NHS and Social Care.

  48. mark loseby 2 years ago

    Hi everyone i have been busy on Twitter today trying to publicise the petition https://petition.parliament.uk/petitions/191242 The more people who can fill their message boxes with sign the petition messages the better. I have just started to message national media with the same message and again anyone able to do the same would be helping a great deal…the more co-ordinated ‘noise’ the better! This time yesterday the petition had 23 signatures. Today it is at 155, mountains to climb but with a couple of individuals pushing it in 24 hours we are heading in the right direction!

    • Glynis Evans 2 years ago

      Brilliant – well done, Mark – It was at just over 500 when I checked as short while ago. Thank you so, very very much :o)

    • Shirley L 2 years ago

      Hi Mark
      I too have been sending the link to everyone I can think of , including the media. I have a journalist friend at the BBC , I’m sure she will help . As you say , mountains can be conquered if we all pull together .
      I had notification today that the ombudsman’s office is now looking at my mother’s case. (Very long story ) It has taken 4 years to get to this point . Remains to be seen what happens next !

      • Glynis Evans 2 years ago

        Fantastic, well done Shirley. I have been posting on every Facebook page I can think of, including Govt website, all the UK Facebook pages relating to dementia, Alzheimers etc plus other charities. Up to just over signatures as of this morning, although a long way to go, I am sure we can get there. Thank you everyone & have a lovely day 🙂

    • Diane Potter 2 years ago

      I have just signed and there are 943 signatures – can this be extended from 3 May? I have only just started investigating how to get help – see my comment above but I am fully committed to do whatever I can to raise the profile and expose this. I will post of Facebook later

      • Glynis Evans 2 years ago

        Hello Diana, thank you so much for your kind message & signature. Unfortunately, the government in their wisdom will be removing the petition from the website. We would have to start all over again. I am thinking of starting one up on the Change.org website. I think there is a website that you can start a petition on & it automatically messages either your own MP or say the minister for health. It wouldn’t be worth starting it until after general election though. Would be so grateful for any input on this. x

  49. mark loseby 2 years ago

    Glynis is there a Facebook page to support the Government petition? I have signed it and shared it on Twitter but obviously we have a long way to go to get to 10k signatures.
    I am putting together some graphics highlighting the petition which once done am happy to share with everyone to use. Hopefully the graphics etc might grab the attention of the media or spark a bit of general interest.

  50. mark loseby 2 years ago

    Hi Glynis i have signed the petition and got a few people to start to post it on Facebook.

    Reading all the above comments makes your blood boil. But with no legal redress and a complaints system with no enforceable authority the CCG staff act like it’s the wild west…let’s get organised to stop this disgrace from continuing.

    • Glynis Evans 2 years ago

      Hello Mark – So sorry for delay in replying. I had thought of setting up a Facebook Page with regards to the petition, but wasn’t certain how to go about doing it. Thank you so much for all your amazing support – it has gone from 25 signatures to 385 in 24 hours. I am sure if we could get it more in the public eye, the figures would skyrocket. If we can get 10k signatures the government have to respond, but need the 100k to get it debated – and they only allow it be on the government website for 6 months. Any help that you can give or advise would be so very much appreciated. I am on Facebook & will see if I can find you on there.

  51. Glynis Evans 2 years ago

    The government has now kindly published my petition calling for an investigation into the shortcomings of CHC assessment process. PLEASE sign & ask as many of your friends & family to sign as you possibly can. We need 10,000 signatures for a response from government & 100,000 to have it debated in parliament. If you have a facebook page PLEASE share on your facebook page & ask your family & friends to do the same. We need to reach that 100k figure. Thank you so much

    • Shirley L 2 years ago

      Very well done Glynis. I will be sending the link to everyone I know.
      A step in the right direction at last !! Well done you !
      Thanks to Angela too for this very supportive website.

      • Glynis Evans 2 years ago

        Thank you so much Shirley. Without people like Angela we would all still be in the dark about this process. Thank you so much Angela

    • Angela Sherman 2 years ago

      Thank you for your kind words, Shirley and Glynis. I’m glad the information we publish is helpful.

  52. Anne Stewart 2 years ago

    Can somebody confirm whether or not it is correct for us to have been asked to leave the DST meeting once the 12 care domains had been reviewed, please? At this point the nurse assessor thanked the other professionals (OT, Physio, Nursing) and us for our contribution and said that she woud discuss the findings with the social worker and then let us know. After about 50 minutes she recalled us to the conference room and said that they had decided that my brother was no longer eligible for CHC funding. All of the suggestion throughout the DST assessment was that nothing had changed in any positive sense since the initial DST and in fact he had developed another medical problem. However, we were not allowed to be present when they discussed the interrelationship of the various care domains (complexity, unpredictability, intensity & nature) and so couldn’t input into this and when the formal report that came out to us it simply said that despite the issues that he has the care he needs isn’t over and beyond what the LA could reasonably be expected by provide. Could anybody confirm whether it was legal to exclude us or could we argue that it was a procedural error?

    • Richard 2 years ago

      signed best of luck with this will share on facebook etc i hpe this hits the 10000000

      • Glynis Evans 2 years ago

        Thank you so very much Richard

    • Richard 2 years ago

      It is normal procedure for the Multidisciplinary Team (MDT) to consider their recommendation in private.
      Suggest FOI request to the Local Authority (LA) asking what training (and when) SW had with regard to Continuing Healthcare (CHC), same to CCG re nurse assessor.
      Also ask them how they (SW) have applied the incidental and ancillary test in determining that the LA is capable of funding all care needs.

    • Diane Potter 2 years ago

      Anne, the same thing happened to us

  53. FB 2 years ago

    Thank you so much Richard.
    This lecture should be watched by all assessors and, more importantly, their ‘managers’ who ‘review’ assessments.
    A really brilliant lecture which will give knowledge, clarity and hope to everyone applying for Continuing Healthcare (CHC).

  54. Glynis Evans 2 years ago

    That all sounds fine & you have it writing, so I would think that they would have to honour that. I am so thrilled for you. I would imagine that the letter states how the payments will be made & information on future reviews. If not, I am sure that they would be happy to advise on that, if you contacted them. Take care & well done xx

  55. Carol Chesborough 2 years ago

    It definitely states “is eligible for CHC funding” I’m just worried that they’ve missed out the not as there were lots of errors on the letters! It would be a big mistake for them to make I guess. Thank you,

  56. Carol Chesborough 2 years ago

    My mum is currently in care after having a severe stroke. She was initially fast tracked by the hospital in August 2016 and granted Continuing Healthcare (CHC). Mum was re-assessed at the Multidisciplinary Team Meeting (MDT) in early January 2017 and we were told she didn’t meet the criteria for CHC funding but the report would go to the CCG and we would be informed in writing after their meeting, but it was made clear that their decision would be accepted. Today, 21st March 2017, my dad received a letter from CCG group stating mum is eligible for CHC but the report from MDT was included in the correspondence stating that they didn’t recommend it. I just want to set my mind at rest as I’m still uncertain. Does the CCG ever go against an MDT decision in this way? I would be most grateful for help here. Many thanks, Carol

    • Glynis Evans 2 years ago

      Well done Carol – So thrilled for you. Is it definitely CHC & not FNC (Funded Nursing Care), they sometimes mention both in the same letter. If so, then that just goes to show that the MDT can be overruled. Brilliant. Well done xx

  57. Denise Darrell-Lambert 2 years ago

    Great idea Glynis. Thanks for sharing. I’d be happy to help you with the wording.

    • Glynis Evans 2 years ago

      Thank you for your kind message & offer Denise. A friend kindly helped me with the wording & I have set it up on the Government website. I have the initial 5 signatures that are required for it to be published & it is going to the parliamentary committee this week for it to be signed off to be made live on the government website. We need 10k signatures to generate a response from the government, but 100k signatures will ensure that it goes to parliamentary debate. As soon as they make it live, I will copy & paste in link. take care & have a lovely day.

  58. Glynis Evans 2 years ago

    I am just in process of setting up a petition on Govt website. Unfortunately there is a restriction on the number of characters you can use in each section, but would welcome your input on the following potential wording.

    To investigate the unfairness of the Continuing Health Care assessment process

    Across the UK thousands of people are being denied their rightful entitlement to continuing health care funding. It urgently needs reviewing for those suffering multiple medical needs from symptoms of dementia & other serious illnesses.

    The Decision Support Tool, in its current form, does not take into account the complexities, uniqueness and unpredictability of many serious illnesses. There are many examples of people being denied funding, yet who are seriously ill & require full time nursing care. The whole process requires complete investigation, with straightforward guidelines & criteria put into place.

    • Shirley L 2 years ago

      Well done Glynis !
      I have already signed the 38degrees .org petition and urge others to do so as they appear to only need 30 more signatures. I am more than happy to support your petition too.

      • Glynis Evans 2 years ago

        Thank you so much Shirley, just got to get it past the Parliamentary Petition committee, fingers crossed xx

  59. Glynis Evans 2 years ago

    Good luck with your MP Mark – I have found this petition regarding the malpractice of the Continuing Healthcare (CHC) assessment system. I urge every one to sign & share on Facebook account, if they have one. https://you.38degrees.org.uk/petitions/investigation-into-the-malpractices-of-nhs-continuing-care
    If anyone can help me with the wording, I am more than happy to set up a similar petition on the government website, which will carry a lot more clout. Something radical needs to be done urgently. Good luck everyone with your continuing fight to achieve justice for your family 🙁

  60. Mark loseby 2 years ago

    Just had reply back from CCG about my request to see list of things CCG would not allow us to talk about at the local resolution meeting we had last week. This was because we raised a complaint 8 months ago (which still has not been responded to, now told end of April before we can expect a reply).

    The meeting manager would not give me the list he said he would stop me straying onto unallowed topics as the meeting progressed.

    Apparently the CCG think my request to see this list is unreasonable!

    So they would not tell me verbally at meeting what we could not talk about (they only wanted to go thru Decision Support Tool (DST) document). Now they don’t want to give me that info in writing either.

    You couldn’t make it up!

    As I said before on this thread until there is a detailed legal framework with no wriggle room for these people nothing will change.

    Everyone needs to keep up the fight no matter how long or hard the battle!

    Remember we pay these people! Our relatives have contributed in full all their lives…it is not and never has been a free service..although if you spend enough time with CCG staff you would think they are doing you a favour!

    Onto our MP to see if pressure from this angle helps.

    • Richard 2 years ago

      Try putting in an FOI request also post on CCG facebook page twitter account and go to their public board meeting

      • Jane Barnes 2 years ago

        What is the CCG Facebook page called?
        Please can you tell me the full name of the page.

  61. Denise 2 years ago

    Help please. Is the Decision Support Tool (DST) supposed to look at patient’s needs now? When they first presented at hospital or a combination of both? My mothers DST is glowing because she has made good progress while in hospital so they hospital are now saying that her needs are greatly reduced and have supplied evidence from the last two weeks, for example about how well she is eating, but the charts from her admission in Jan and Feb indicate she was eating as little as a 1/4 portion of a meal during a whole day. At that time the hospital recommended nursing care in a nursing home now they have changed their minds and have said she can go back to her own home. I’m so confused. What point in time is the DST supposed to cover? Thank you

    • Glynis Evans 2 years ago

      When my mother in law was transferred from hospital (where she was really poorly & had constant infections, wouldn’t eat etc) to care home (where they really look after her well), she improved greatly from the point that she is eating better & the hoist her daily from bed to chair & give her pysio. Alsthough she is still bedbound 80% of the time & needs constant 24 hour attention in a nursing home. We argued that her needs are still managed needs & just because she has improved, this is due to the fact that she is being looked after better. If she was at home, she literally would die. They threw this out & said it was based on her current managed needs, not on unmanaged needs….

    • Richard 2 years ago

      Decision Support Tool (DST) section 28 will help :
      ’28.Needs should not be marginalised because they are successfully managed. Well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need will this have a bearing on NHS Continuing Healthcare eligibility. However, there are different ways of reflecting this principle when completing the DST. For example, where psychological or similar interventions are successfully addressing behavioural issues, consideration should be given as to the present-day need if that support were withdrawn or no longer available and this should be reflected in the Behaviour domain.’

  62. Glynis Evans 2 years ago

    I have posted on my MP’s Facebook page that Continuing Healthcare (CHC) assessment process needs looking at urgently and how unfair it is. I totally agree with Mark, that until a fully legal meeting framework, with a proper points system for each domain and a point criteria for eligibility is put into place, then nothing will change. Is there any way that we can get a petition set up on the government website calling for this. With enough signatures, we may be able to bring enough pressure on the government to get this done. Would welcome your thoughts.

  63. mark loseby 2 years ago

    We were refused all methods of ‘recording’ the Multidisciplinary Team (MDT) meeting including the threat if we took notes we would be asked to leave and the meeting would continue without us.

    If no one including the claimant has nothing to hide why not have the meeting recorded? It would stop any ‘confusion’ on either side at a later date.

    We have just had the local resolution meeting having waited 1 year 2 months for the CCG to agree to this. They again would not let us take notes but had a note taker. When i said i wanted my comments about discrimination minuted they stopped the meeting telling me now to go to NHS England.

    Until a fully recognised legal meeting framework is established nothing will change. The bureaucrats know they can get away with virtually anything currently.

    Apparently this is a person-centred process…The irony seems to be lost on our CCG!

    • Richard 2 years ago

      been to several meetings with the authorities promised full notes ………………… huge delays then basic bullet points now record and take advisor to act as note taker

  64. Gordon Stovell 2 years ago

    Hi, could you tell me if there is any reason why I can’t record my face to face meeting with NHS Continuing Healthcare (CHC) panel regarding my deceased mother’s payments for care? I have asked if it is alright to record it and it seems they are not very happy about it and are coming back to me.
    Gordon Stovell

    • Richard 2 years ago

      none at all if openly it can be used in legal proceedings if covert probably not but still usefull frame of reference

  65. Anne 2 years ago

    I agree Glynis, we had read everything we could, had all our answers prepared and argued every point. Despite high scores which on the face of it meant mum should qualify, we were still given and out and out no, and that the scores didn’t mean anything!! The whole scoring process just seemed a bit pointless!

    • Glynis Evans 2 years ago

      So sorry to hear that Anne. We were told exactly the same & also that the scores didn’t mean anything. There should be a proper scoring system in place so that they have to grade each domain by a points system & that the levels of points decides the grading. Then from this, once you achieve a certain amount of points in a particular number of domains then you qualify. This would then mean that there are proper guidelines in place. The whole thing needs looking at completely.

  66. Jenny 2 years ago

    Well said Elizabeth. All resonates!
    Glynis, it is worth remembering that not only do you need to prepare and collect and present evidence on your relative’s needs, you must apply these to the wording of the domains and also demonstrate Nature, Intensity, Complexity and Unpredictability to establish an overall Health Need. Also remember the scores needed to achieve eligibility – which are in the National Framework and Decision Support Tool (DST) documentation. Assuming some understanding of the process and fair dealing on behalf of the assessors (!), it’s worth considering that In times of tight funding it’s unlikely that awards will be made with no Severe scores and/or no narrative linking the overall impact of the domains.

    • Glynis Evans 2 years ago

      Thank you for your kind message Jenny. We did actually do all of that, applied them all to the wording & criteria of the domain & demonstrated all of the areas, such as intensity, unpredictability etc. She actually scored High/Severe in many of the Domains & Medium/Moderate in all others except one (although 2 of the Medium ones we disagreed & said we believed she should score high). We had provided 28 page documentation substantiating our claims, but they didn’t want to know. Months of research & preparation leading up to the Decision Support Tool (DST). We do not have the strength or energy to go to appeal. It is very deflating & demoralizing :o(

      • Shirley L 2 years ago


        This all sounds very familiar to our family. 4 years in and still fighting . We have just sent Mum’s case to the Ombudsman and are waiting to hear from them . If you truly believe your relative should have been funded please do not give up. I know only too well how stressful and infuriating it all is but we owe it to our parents / relatives to continue to fight on their behalf , after all they paid into the system for a very long time.

        • Glynis Evans 2 years ago

          Thank you so much Shirley for your kind message. I wish you all the very best of luck with the Ombudsman xx

  67. mark loseby 2 years ago

    My wife and myself have POA on my father in law who amongst other things is a dementia sufferer. When we started the Continuing Healthcare (CHC) adventure in November 2015 (father in law) wished to be cared for at home.

    We began the process with a flawed CHC checklist which was redone after our complaints to the hospital. A Multidisciplinary Team (MDT) meeting was ‘hastily’ arranged by the CCG for a few days after the checklist was completed.

    More worryingly we began to communicate with the hospital and CCG co-ordinator telling them in no uncertain terms that the hospital documents they were relying on were incomplete/innaccurate and being falsified.

    On every occasion we highlighted these issues during the last 1 year 2 months it has been ignored completely by the CCG including the chief officer. Even when we produced a letter of apology from the hospital chief executive regarding the ‘errors/omissions’ in the hospital documents the CCG refused to stop the MDT meeting from taking place.

    The co-ordinator from the CCG told me it did’nt matter if the records were not complete/innaccurate/falsified as even if we won CHC funding the CCG would not under any circumstances allow funding for any care at home, they had a new unpublished policy they were following instead of the national framework.

    When i asked for the policy they refused saying it was unreasonable for me to request it! I got it eventually by a freedom of information request.

    Anyway to cut a long story shorter the MDT meeting took place. We told them we wanted to bring a note taker with us so we could concentrate on the meeting.

    12 hours before the meeting this was refused as unreasonable and we were told we could not take any notes at the meeting.

    We obviously protested in writing and at the meeting but funnily enough the written protest presented to them at the meeting is not mentioned in their documents.

    At the MDT meeting the CCG brought along the lead commissioner for appeals (the person we would need to complain/appeal to if funding was refused). When we asked why he was involved at the meeting we were told it was because we had complained so much already.

    We stated this was not acceptable as this person could not be considered impartial in any appeal process due to his participation in the MDT decision making. We were told it was happening no matter what we said.

    The funding was unsurprisingly refused as father in laws needs were not ‘complex’ enough.

    We have now spent 1 year 2 months asking for the ‘local resolution’ meeting to appeal the predetermined decision.

    The ‘appeals guy’ refuses to speak to us as we made a complaint against him. He has now been promoted to head of CHC commissioning so we have no faith in getting any form of independant review.

    We have written 11 times by recorded delivery letter/email to 6 different people at the CCG including the chief officer and chief nurse. On all occasions we have had no response from them and no date given to us for a local resolution meeting.

    All of the original people involved in the MDT process except the ‘appeals guy’ have left the CCG under and i quote from them ‘circumstances that cannot be disclosed to me’.

    In the end 2 weeks ago it seems i pressed the magic button by formally complaining saying the CCG were discriminating against father in law due to his mental health disability…suddenly we had a local resolution meeting on Friday although they are only prepared to discuss the DST document and nothing else. I have stated that this is not policy and we will be discussing all aspects of the process to date.

    During Fridays meeting the CCG refused to discuss anything except the DST document and after 1 hour having highlighted 17 breaches of the national framework and pulling apart the doctors ‘robust’ reports, the new appeals guy stopped the meeting refusing to carry on.

    He told us to complain to NHS England it had nothing more to do with them. The note taker from the CCG refused to put on record my complaint about acting in a discriminatory way due to mental health and age!

    To add insult to injury we were then told it would take 28 days to get the meeting notes sent to us!

    As you can imagine from the brief details here (the full account would take you some hours to read and i think would horrify you even more) the stress on father in law and us has been enormous,and it continues to this day.

    Luckily we have read the national framework in detail and have been persistent enough to get to this stage, god help people on their own!

    So the fight continues and the person at the centre of it all has not been given the right care after 1 yesr and 2 months.

  68. Jim Anderson 2 years ago

    I’m not sure who to fight! I would be grateful for any advice. Was clueless about Continuing Healthcare (CHC) and had no idea partner was screened 2 or 3 times over a year before she being awarded CHC (she has a brain injury and doesn’t understand). Health Trust failed to follow most of the National Framework and have kept no records of prior screenings, etc. We made a formal complaint and it has apologised for their many faults. She’s missed out on one year of CHC as a result (her support needs have remained consistent) + our family has had to help us financially because I’ve been her full-time carer because of not getting any support. How do we get backdated CHC? Is any way easier than the other for us? Is any way more likely to be successful given what has happened? Can we get redress so we can repay our family for their financial support? I’ve considered:
    1 Request Trust to backdate CHC + pay redress.
    2 Complain to PHSO if Trust refuses, requesting backdated CHC + redress.
    3 Retrospective review.
    4 All of the above
    I’m not sure where to start! If anyone can advise then I would be very grateful. Thanks.

  69. Glynis Evans 2 years ago

    I think that unfortunately it may depend on how the representatives interpret the guidelines for the Decision Support Tool (DST). If they stick to it to the letter, with no flexibility – as our head assessor did, then there is no possibility. We went armed with a 24 page document we had put together from information in the booklet, website, search engine which substantiated why we felt my mother-in law should score high in the majority of domains. She is in a nursing home, doubly incontinent, suffers from advanced heart failure, totally bedbound, has advancing dementia, has recurring bladder, kidney & chest infections, has to have medication administered (inc phenobarbitone which is a controlled drug & automatically scores high in the medication domain) & may have to be helped with feeding. Yet they said she did not qualify, despite us putting up excellent arguments for each domain.

  70. Elizabeth Marnham 2 years ago

    I agree that it is absolutely worth battling on, but it’s easy to say and such a challenge to achieve. Anyone who goes for it – themselves, their family or other representative – is doing so at a time when our loved ones are suffering and probably already worn down and anxious. The Continuing Healthcare (CHC) process includes so many hurdles to be jumped, and it’s never-ending. Our mum is now receiving CHC – which she was awarded at the first attempt. We are so grateful to the efforts of websites such as Care To Be Different – they equipped us with all the information we needed about mum’s rights, how the process works, and enabled us to put together a strong case. Some aspects of the Initial Checklist and the Decision Support Tool (DST) meetings were good – mainly because we’d done our homework beforehand and came with a ready prepared document setting out in detail the family’s evidence for each of the domains at both stages. At the DST meeting, we made sure the assessor looked at our comments in domain 12 too. We also made sure the DST meeting included a representative from the Dementia Rapid Response Team who were working with mum at the time, as well as the care home and social services. As others have said, the assessor had never met mum, and spent five minutes in her company while he talked to us before we withdrew to a separate meeting room. The social worker was very supportive – the cynical side of me says it was in the local authority’s best interest to get the funding to come from the NHS. She had met mum briefly just a day or so earlier, but her experience, knowledge and support in the meeting were invaluable, especially when the assessor tried to downgrade mum’s needs in one significant domain. But of course, it’s not a done deal. In mid-April, mum will be having her three month review of funding so who knows what the future holds. It’s exhausting and time-consuming. And the impact on our 89-year old dad has been enormous and unhelpful. We still haven’t received the outcome in writing from the CHC team since the DST on 30 January and the CCG decision the following week, so that’s something else to be chased up. Something we learned from the meeting: make sure you get clear direct contact details from the CHC assessor and test email addresses/phone numbers before the meeting ends just to make sure they’re accurate. Also, make sure you photocopy the notes taken by the assessor. Our next hurdle was to find a suitable nursing home. Mum’s particular combination of multiple health conditions means that she presents quite a number of challenges. Many of the homes we approached said they simply wouldn’t be able to manage her without additional funding for 1:1 care. We have found a reasonably local home which has been very welcoming, but we are keeping a close eye on their capacity to meet all her health and personal care needs appropriately and effectively. Like so many others, mum and dad have never been “takers” and all their lives have paid their taxes and national insurance contributions into the UK system. We dread to think what a predicament they would be in if the two of us, their children, were not stepping in to represent them and fight their corner now that they are frail, elderly and so very very vulnerable. We are tired and our capacity to continue in our places of work has been affected which in turn has an impact on our earnings and pensions. Don’t get me wrong – we’re doing this for mum. She has fought for us all our lives and would never give up on us. Now it’s our turn to do the same for her, but it’s draining and, frankly, shouldn’t be necessary to worry about whether she will continue to receive the support she clearly needs and for which she is undoubtedly eligible.

  71. FB 2 years ago

    Well said Jenny. Complaining to people higher up the chain helps and, as you say, knowing the Guidelines and the law is key. It’s a absolute disgrace that vulnerable people are treated like this by these so called managers. We fought, we won and I am now in hot pursuit! I also found most of the lower level staff unable to spell, write an email or be intelligible on the phone. Most disturbing for me was the arrogance of the ‘manager’ in our case that she knew better than the clinicians involved.

  72. mr Terry Dellar 2 years ago

    My mothers claim for chc has now gone to NHS England, as she was refused twice. I have spent the last 3 months trying to get the notes sent from the ccg to NHS England. This has now been done. However the excuse from the CCG for the delay was that the care home notes were incomplete. If this were the case how could the original panel have made an informed decision. However I am not giving up!

  73. Jenny 2 years ago

    It is worth doing, but ensure you are mentally and physically fit when you start the process, and that you are either willing to put in many hours researching the National Framework, Practice Guidance, writing letters, making phone calls to numbers you’ll be doing well to discover and get answered, and using Angela’s book, or are able to pay to instruct someone well informed to act on your behalf. There is absolutely no point in approaching this process half prepared. In my experience, Social Services and all aspects of NHS know next to nothing about Continuing Healthcare (CHC), and how it should be lawfully be assessed and administered. For the heads of CCGs and Commissioning Support Units (CSU) and Adult Services it is largely in their financial interest to keep “Ground Level Staff” in this state of ignorance. Social Services seem to be barely up to speed on The Care Act 2014, and so are more than happy to play Pass the Buck around their own departments with your relative, and then widen the game by playing the same game with NHS, so expect little support from them.
    Understand that most of these people don’t care. Some do, but most don’t, so never expect to appeal to their better nature nor expect them to behave with respect, kindness, integrity or decency towards your relative or to your concerns. There is no substitute to holding them to account to the established rules, Framework and Statute, although some are so arrogant or ignorant, they will attempt to ignore that too!
    The health system is now designed to employ plenty of semi literate uncaring people, often with no health care experience, on 6 month contracts who will treat your case as an imposition on their time. They object to answering the phone, replying to letters, or doing anything other than deeming your case an “Inappropriate Referral”, which frequently indicates the low level of their own knowledge and intellectual curiosity. Endless battles at this level are infuriating and tiring, but contact with the top of the pile sometimes works – especially when you can cite specific and obvious breaches of The National Framework etc. or can reasonably threaten personal responsibility for their omission. No business with this level of financial turn over could operate like this “In the Real World”, and no “Social Care” department would avoid Trade Descriptions prosecution when they behave in such an avoidant and uninformed way.
    My final suggestion is to avoid getting into the Appeals process wherever possible. Prepare well for every assessment, communicate clearly and with all concerned, keeping accurate records, and bring failure to follow process to light along the way, and at the highest level, so you avoid moving the sad and sorry game deeper into their own territory.
    We have been awarded and retained CHC for our relative, but it has taken 2.5 years, and the claim for years un assessed and when the care was of very poor quality remains an ongoing matter.
    I reached a point when I could no longer tolerate my relative experiencing low quality care, inadequate communication regarding their care, and being ignored by Social Services primarily because relative was self funding and they were self serving.
    We all deserve better.
    Get informed. Get angry, and get even.

  74. Lynn Collett 2 years ago

    My mum was assessed on 16th August 2016, the results of which were given to us 69 days later. I informed the CCG that I wanted to appeal. We were invited to a meeting where a fast track assessment was agreed. By the time this had taken place and a decision was made my mum had died. Continuing Healthcare (CHC) was granted for two weeks prior to my mum’s death because “it was clear from that day that she was dying”. The appeal is still going ahead as I stated that CHC is not based on when you are going to die. The last assessment referred to attached reports which for me were not attached and I have had to pay £100 to get the reports released – although I have still not received them! Every document we have received has errors or omissions. My mum died 3 months ago but the battle continues…..who supports those people who are unable to fight or indeed comprehend the workings of CHC?

  75. Meggie 2 years ago

    I have been attempting to get Continuing Healthcare (CHC) for my father since March last year and have now given up.
    I feel an immense sense of relief. It was making me ill.
    My father was discharged from hospital without being being assessed and it took until September to get a Checklist done. He scored highly enough to go on to a full assessment but the Community Psychiatric Nurse ignored the rules and decided not to. The CCG have backed his decision that a second Checklist is needed when my father is at his ‘optimum’, ‘stable’, ‘medically fit. As to when my father will be deemed to be any of these things is a ‘clinical decision’ which they will make at some point in the future. We are still waiting.
    No-one involved has followed the CHC guidance, most have been ignorant and nothing has been done properly. But still I can do nothing as I cannot force ‘them’ to carry out the full assessment. Believe me, I have tried. I have pointed out their errors and mistakes, sent letters and emails. I am simply fobbed off with a couple of sentences that do not address anything I have raised. Since the last round of communications I have heard nothing at all. I am just being ignored. There is nothing I can do. In desperation I contacted my MP – she has not even replied.
    As Angela says in her article people like my father have already paid for their NHS care, through a lifetime of National Insurance Contributions. It is this generation too that voted the NHS into existence. Many like my father were still serving in the armed forces at the time, young and fit and healthy. They did not need healthcare or the NHS back then but were happy to vote for it and pay for it and to go on paying year after year. Now they finally need it the NHS is no longer there.
    I feel I should go on fighting. I know what should happen. I am well equipped and well informed and felt initially it was just a matter of knowing enough to ensure the proper processes were followed. But I can’t even get the process started. I paid a company that claimed it was a specialist in CHC for support. They have asked, as I have, for an assessment but the CCG ignore them as well. The specialist company tells me they cannot force the CCG to carry out an assessment.

  76. Anne Whittaker 2 years ago

    We fought for Continuing Care for my mum and felt we had a good case. At the “Review”, the social worker who turned up and the head assessor had never met mum before and didn’t know anything about her or her condition. We fought point by point all the way through the meeting, but despite getting high scores in several areas, we were told at the end of the meeting that we’d been turned down! No explanation given other than not justified! Basically the scores meant nothing!
    We were prepared to fight and make an appeal but her key worker had spoken to mum prior to the meeting and told her she would have to move to a different floor in the Care Home if we were successful. My mum, being not one for change, then announced that she didn’t want to move so we felt we’d no choice but to give up, for her sake! From the Care Homes perspective, does it cost them more for a Nursing bed rather than a Residential bed? Just wondering why the key worker would be against us!

    • Glynis Evans 2 years ago

      We had exactly the same situation with my mother in law. None of the people at the assessment had ever met her before. It is disgraceful what was said to your mum. We were not allowed to be with my mother in law when the assessors went & interviewed her – even though she suffers from advanced dementia. I told the lady leading the assessment (Who was a member of the Continuing Healthcare panel) that I felt that it was virtually impossible to secure funding – which she agreed with me! The whole system is a shambles 🙁

  77. Glynis Evans 2 years ago

    This is where the money goes rather than to the people who really deserve it & need it. This is a report from the Telegraph
    “More than 600 health quango chiefs on six-figure salaries amid NHS cash crisis”

    • HENRY Barnham 2 years ago

      Yes Glynis, you don’t have to be involved long before you realise why the NHS and the Charities will allways need money and the benificiaries are not the patients, other people are making a good living out of it.
      The care homes too the residents fees are mostly to pay the mortgages for the owners to build up a portfolio.

      • Glynis Evans 2 years ago

        I totally agree Henry, My father died in a nursing home, due to the total neglect of the staff. Yet nothing was ever done – as always it comes down to greed 🙁

  78. Gill Williams 2 years ago

    We tried for Continuing Care (CHC) for our mother who though unwell when she went into the local hospital caught e-coli whilst there which totally changed her. She couldn’t walk and became totally incontinent. The social worker who headed up the first and only meeting had only met mom that morning. I argued with him because the nurses had put down that mom had eaten all her lunch on the previous Sunday and this is what he wrote but I was with her all that day and she didn’t touch her lunch. He refused to put down what I said claiming that this is what the nurses had written so must be right. No amount of disagreeing would change his mind and this also happened with moms incontinence – the nurses had written that mom used the commode for her toileting. This was so untrue, mom could not get out of bed.
    I know nursing staff are under a lot of pressure and I would prefer them not to feel in details of a patients abilities if they don’t know. No amount of me argueing with the chairman would change his mind.
    Mom passed away last week and I still feel she should have had Continuing Care. I was told that even though she died this didn’t constitute her requiring CHC this I understand. They needed the bed at the local hospital and needed her out and everything was so rushed. It’s not about the money to me but the fact that her last few months were not as she would have wanted because of her being contagious with e-coli.
    It all makes me so angry, but moms at peace now. Gill.

    • Glynis Evans 2 years ago

      So very sorry to hear about the sad passing of your mum Gill. To have such stress at such a time, must have been difficult to bear. My thoughts are with you x

  79. Jean Salmon 2 years ago

    I have secured Continuing Healthcare (CHC) for my husband who has FTD dementia, for day care only in the local care home which he enjoys. I feel he is ready to go into another better care home full time but do not want to loose the funding I have at the moment. Any ideas please.,we have only just managed to get funding after applying last summer.

  80. HENRY Barnham 2 years ago

    Yes Angela it is worth fighting for, unfortunately as in my case we are not up to it , the shame is the few of us that are left who put our lives on the line in WW2 fighting for democracy are now end of life. We are in a completely different world , our lives being controlled by so called professionals who are so unprofessional and make the rules up to suit themselves. Saga reckon they can put ten years on your life with a holiday I reckon social services will quickly take it off with all the assessments.
    Good luck to anyone who is up for the fight.

    • Glynis Evans 2 years ago

      I completely agree with you Henry. They make it so difficult. I agree about being in a completely different world. Unfortunately it is one ruled by figures & money. The stress from fighting for funding made me really ill & we never secured anything despite our relative suffering from advanced dementia, completely bedbound & doubly incontinent

  81. FB 2 years ago

    Entirely thanks to Angela and her website we secured Fast Track funding. I am persuing the ‘manager’ (called a verifier)after our scores were downgraded twice!
    She refused to send me a copy of the assessor’s handwritten notes saying they had been destroyed as they were a paperless Dept!! I have managed to get that ridiculous policy changed so notes will be kept until an assessment has been signed off.
    Our case has been raised in the council chamber and I have been in touch with the National Audit Office (NAO) as suggested.
    Recently my husband was allowed home from AandE because we had a live-on carer (from Fast Track funding) thereby saving the NHS £3000p per week and a vital bed.
    Keep Battling On. Don’t give up and don’t be bullied by these managers who have probably never even met the applicant. Use all Angela’s advice.

    • Phil Seurre 2 years ago

      My CCG routinely destroy original Decision Support Tools (DST) completed and supposedly signed with a recommendation by members of the Multidisciplinary Team (MDT). It is replaced with a printed version. Very poor practice would not be permitted in any other industry.

    • Angela Sherman 2 years ago

      FB – Thank you for your very kind words about the information we publish. Appreciated.

  82. Glynis Evans 2 years ago

    It is just too stressful, trying to fight them. The assessors lack proper training, & the head assessor is usually someone off the panel who makes the decision. They totally disregard the point that they are making their assessment based on managed needs. In our case, the Social Worker at the meeting didn’t even know the person they were at the meeting for – they had only met them that morning, as had the head assessor & the Mental health worker. It was all based purely on notes from the care home & how she was that day. We fought them on every point & in detail – however when we challenged them & said that the person they were assessing had to be virtually permanently comatose, they agreed….It is a complete shambles 🙁

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