NHS Continuing Healthcare – is it worth the fight?

NHS Continuing Healthcare – is it worth the fight?

Angela Sherman, Director, Care To Be Different

Angela Sherman, director of 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

105 Comments

  1. Glynis Evans 3 days 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.

  2. mark loseby 5 days 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 4 days 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…..

  3. Linden 5 days 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 5 days 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 5 days ago

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

      • jane Barnes 5 days 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 5 days 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 3 days 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 4 days ago

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

          • Jane Barnes 3 days ago

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

          • Richard 3 days ago

            better still go on her facebook page leave a public message

      • Meggie 4 days 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 4 days 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 3 days 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 3 days 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 days 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 1 day 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.

          https://www.youtube.com/watch?v=JBWq36-wJ-A

          http://www.lukeclements.co.uk/lecture-series/

  4. Glynis Evans 1 week 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 3 days 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 3 days ago

        I do so hope that you are successful Shirley x

  5. Jenine 2 weeks 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 1 week 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.

  6. mark loseby 4 weeks 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!

  7. mark loseby 4 weeks 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 4 weeks ago

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

  8. Maggie 4 weeks 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 4 days 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 4 days 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 4 days ago

          Thank you Glynis

      • FRB 4 days ago

        Diane
        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.
        FRB

        • Diane Potter 4 days ago

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

  9. Sue Hickman 1 month 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

  10. mark loseby 1 month 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 1 month 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 4 weeks 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 4 weeks 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 4 days 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 4 days 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

  11. mark loseby 1 month 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.

  12. mark loseby 1 month 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 1 month 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.

  13. Glynis Evans 1 month 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
    https://petition.parliament.uk/petitions/191242

    • Shirley L 1 month 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 1 month 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

    • Author
      Angela Sherman 1 month ago

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

  14. Anne Stewart 1 month 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 1 month ago

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

      • Glynis Evans 1 month ago

        Thank you so very much Richard

    • Richard 1 month 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 4 days ago

      Anne, the same thing happened to us

  15. FB 1 month 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).
    FB

  16. Glynis Evans 1 month 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

  17. Carol Chesborough 1 month 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,
    Carol

  18. Carol Chesborough 1 month ago

    Hello,
    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 1 month 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

  19. Denise Darrell-Lambert 1 month ago

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

    • Glynis Evans 1 month 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.

  20. Glynis Evans 1 month 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 1 month 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 1 month ago

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

  21. Glynis Evans 1 month 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 🙁

  22. Mark loseby 1 month 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 1 month ago

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

      • Jane Barnes 1 month ago

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

  23. Denise 1 month 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 1 month 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 1 month 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.’

  24. Glynis Evans 2 months 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.

  25. mark loseby 2 months 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 1 month 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

  26. Gordon Stovell 2 months 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.
    Regards
    Gordon Stovell

    • Richard 1 month ago

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

  27. Anne 2 months 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 months 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.

  28. Jenny 2 months 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 months 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 months ago

        Glynis

        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 months ago

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

  29. mark loseby 2 months 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.

  30. Jim Anderson 2 months 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.

  31. Glynis Evans 2 months 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.

  32. Elizabeth Marnham 2 months 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.

  33. FB 2 months 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.
    FB

  34. mr Terry Dellar 2 months 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!

  35. Jenny 2 months 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.

  36. Lynn Collett 2 months 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?

  37. Meggie 2 months 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.

  38. Anne Whittaker 2 months 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 months 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 🙁

  39. Glynis Evans 2 months 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”
    http://www.telegraph.co.uk/news/2017/03/05/600-health-quango-chiefs-six-figure-salaries-amid-cash-crisis/

    • HENRY Barnham 2 months 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 months 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 🙁

  40. Gill Williams 2 months 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 months 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

  41. Jean Salmon 2 months 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.

  42. HENRY Barnham 2 months 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 months 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

  43. FB 2 months 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.
    FB

    • Phil Seurre 2 months 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.

    • Author
      Angela Sherman 1 month ago

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

  44. Glynis Evans 2 months 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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