If your relative needs to be assessed for NHS Continuing Healthcare funding, you may be wondering what the different stages of NHS Continuing Healthcare assessment and appeal are.
If you have health needs/nursing care needs and you need full time care, you need an assessment for NHS Continuing Healthcare funding. If you’ve already had an assessment and been turned down for funding, you can appeal.
We’ve outlined here the various stages of NHS Continuing Healthcare assessment and appeal – and who you need to contact in each case…
1) Initial assessment: This is the ‘Checklist’ assessment and it looks at 11 aspects of health. You can ask a care home manager, social worker, GP or other health and social care professional to organise this – or you can contact the Continuing Healthcare team at the local NHS Clinical Commissioning Group (CCG). A Checklist can be carried out by one person – but that person must understand the process and be familiar with your relative’s care needs. The Checklist does not determine eligibility; it simply indicates whether you should have a full assessment. See point 2 below.
2) If you don’t get through the Checklist, and you disagree with that decision, you can request another Checklist assessment. Contact the local NHS Continuing Healthcare team in writing and say you would like the Checklist to be repeated. Outline why you disagree.
3) If you do get through the Checklist stage, you then go on to have a full assessment. At this point a form called the ‘Decision Support Tool’ (DST) is completed by a Multidisciplinary Team (MDT) – not just by one person. A social worker or other local authority representative must be involved.
4) If you’re found eligible for NHS Continuing Healthcare after the full assessment, you are said to have a Primary Health Need, i.e. your primary care need is a health need. Funding will be awarded to you by the NHS to cover your care costs, including your social care costs, such as accommodation in a care home. Funding is backdated to day 29 after the original Checklist was received by the CCG. A further funding review then takes place in 3 months, and after that it should be reviewed annually.
5) If you’re ineligible at the DST stage, you can submit a Continuing Healthcare appeal via the local NHS. You may be offered a Local Dispute Resolution Meeting first, but in many people’s experience this meeting is unlikely to change the decision. It seems to be simply an opportunity for the NHS to justify the existing funding decision. Write to the local NHS Continuing Healthcare Dept and say that you disagree with the outcome of the MDT assessment and you would like to appeal formally. The NHS must adhere to Dept of Health’s Continuing Healthcare review timescales in dealing with your request. You then need to put together in writing all your reasons for disagreeing with the decision to deny Continuing Healthcare funding.
6) If this Local Dispute Resolution process results in the decision of ‘ineligible’ being upheld, let the local NHS know that you would like an Independent Review Panel to be convened at regional level. You can also approach NHS England directly and ask for an Independent Review. Write to the NHS Continuing Healthcare Review Panel Administrator at your regional office of NHS England, state that you disagree with the decisions made by the local NHS Clinical Commissioning Group. Outline which assessments have been carried out so far, and ask for a date for an Independent Review Panel hearing (IRP). Note: of you don’t go through the motions of any Local Dispute Resolution process first, you may find that NHS England will send your case back to the local CCG for this to be completed before you can receive a date for an Independent Review.
7) Alternatively, if your relative has clearly deteriorated through this whole process, you can ask the local NHS for a further DST assessment. Also, if your relative is in ‘terminal decline’ or in a period of rapid deterioration, you can ask for a Fast Track assessment.
8) If you’re found eligible for funding at the Independent Review, NHS Continuing Healthcare funding will be awarded, backdated to day 29 after the Checklist document is received by the CCG.
9) If you’re found ineligible for funding at the Independent Review, you can approach the Health Ombudsman.
10) Failing that you may have to go on to judicial review/legal action.
What guidelines should be followed in Continuing Healthcare assessments?
Our book, How To Get The NHS To Pay For Care, is loaded with tips and information about what happens IN PRACTICE at NHS Continuing Healthcare assessments – not just the theory. Read more here…
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Hello, Angela – I just want to make sure I’ve understood stages 9 and 10 correctly. If I think the ombudsman has made a wrong decision, can I take it to another solicitor (to take legal action)? I have politely challenged the ombudsman’s decision but she wouldn’t change her decision. Thank you for doing such a great job!
Hi Terrie- yes you can challenge the PHSO decision but this is the last stage without resorting to legal action. Kind regards
Thanks, Angela. I appreciate your
help. 🙂
Hi. When should NHS CHC checklist be completed? I know there are different scenarios, straight to DST, fast track, for example mum and I have had the acute hospital, discharge to forget debate with the Trust & CCG so I was thinking more generally. I have been told by the LA & CCG that a checklist would only be requested ‘if in the clinical opinion of a health or social care professional it was deemed appropriate’. I know I could (& should) have requested it myself but I wasn’t aware it even existed for 2 years. I have now read the CCG regulation and Framework and they do seem ambiguous and contradictory the regulation states:
(2) A relevant body must take reasonable steps to ensure that an assessment of eligibility for NHS Continuing Healthcare is carried out in respect of a person for which that body has responsibility in all cases where it appears to that body that—
(a) there may be a need for such care
The LA & CCG seem to interpret ‘where it appears to that body that there may be a need for such care’ as the ‘clinical opinion of social & health professionals’. My question is are they correct? If they are then, in mum’s case, in their opinion there wasn’t a need for such care, so they didn’t complete a checklist (therefore they did not go to a DST either) therefore care was provided by the LA. If this is the correct interpretation of the regulation then I can’t square this off against the definition/ establishment of a primary health need (PHN). If mum has a PHN then care should be provided by the NHS, the only way to establish a PHN is via a completed DST, if an organisation wants to screen an individual prior to a DST then the checklist must be used. Is that not the case? By relying on the subjective albeit professional opinion of those involved the various organisations decided that a checklist wasn’t necessary. Sorry if this is confusing, it certainly confuses me!. Thanks
Hi Simon – anyone can request a checklist assessment to be carried out at any time. If they refuse then you can download your own Checklist and complete it yourself. If you would like guidance or advice on this please contact us and we will talk you through the process. Kind regards
enquiries@caretobedifferent.co.uk
I think that you will find that you are correct in your thinking, and that you must go through the checklist/Decision Support Tool (DST) process first. This will then be used subsequently for the basis of an assessment for Continuing Health Care.
Brace yourself for the Continuing Health Care interview. My experience is that you will face a panel of up to 6 professionals, including (but by no means exclusively) those involved in the patient’s care. You will be frankly amazed at some of the conclusions that the panel reaches about the existing condition and capabilities of the patient.
Basically it’s all down to money and (as you will be aware) Continuing Health Care is expensive! On that basis it is quite clear that funding is only awarded in the most extreme/needy cases by the local Clinical Commissioning Group.
Don’t forget that if you are initially refused Continuing Health Care, there is an appeal process to an Independent Review Panel. If a Review is granted, it will involve an independent chairman and officials from another area who have had no previous involvement in the case.
Finally, and if you haven’t already seen it, I would suggest that you take a look at the attached NHS document https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/770684/National_framework_for_CHC_and_FNC_-_public_information_leaflet.pdf
Good luck!
Hi Peter. Thanks I have seen this, its actually one of the things that caused me to raise my question. It talks about the full assessment being a checklist then, if passed, a DST and explicitly states ‘The first step in the assessment process for most individuals is screening using the Checklist Tool.’
But both LA and CCG have contradicted this in mum’s case. The first step was not the checklist tool, the first step was passing an unknown health and/or social professionals ‘clinical opinion that it was appropriate to complete the checklist.’ So, for us, it wasn’t deemed appropriate (although no one told us) so no checklist instead jump to social needs assessment and means testing. I guess I am questioning the legality of the CCG statement and reliance on opinion prior to proper assessment. Thanks
I have a neighbour who is profoundly physically disabled following a stroke, and has been turned down for Continuing Health Care. He is therefore having to fund visits by carers 4 times a day.
I have in mind appealing the original decision not to award Continuing Health Care. Does anyone know whether an appeal can be heard without the affected person being present. Both he and his wife are elderly and are simply not up to appearing before an appeal panel, but I am quite happy to represent them. Any advice on this issue would be much appreciated. Many thanks
Hello Peter, my partner of fifty years had a massive stroke in 2015. He was paralysed and blind in the left eye, doubly incontinent and in a dreadful state. He didn’t even come close to passing the test. I found a very good nursing home. He passed away last August. It cost him £82000. In fact, if he had lived another three years he would have died a pauper. One of the questions was is he likely to fall, to which they put down no! I asked around and was told he stood no chance, and because of all the intense stress I didn’t bother.
An initial Checklist was completed which my sister passed. The Checklist was completed by a social worker during a meeting with my sister, care home staff and me. On enquiring three months’ later when the full assessment would be done, I was told by the District Nurse that they were not happy with the initial assessment, they thought it was too generous to my sister and that they were going to repeat it (until they got the answer they wanted, presumably). Without informing me, incidentally. Can they do that, insist on repeating the initial assessment?
Hello Sheila. Not sure I can understand primary social care if there are no activities of daily living. What was stated on the social/community reports presented by the social rep if they even attended. At local resolution the social rep could not offer any comment about what social care they provided and said it would be in the report, of course no input by the social rep in the report at all. We are about to meet for the Independent Review Panel (IRP) but only if our evidence is presented to the Chair in advance. So far the CCG have not provided the daily care records, G.P. or hospital records to the Chair but have copied the Decision Support Tool, Multidisciplinary Team and local review reports and a few choice documents from the care home. We are considering a trip to NHS England to deliver the box but in the light of your experience wonder whether this is a waste of time and that we should consider legal action instead without a solicitor, having spent thousands already and yet we still know more than the solicitor about the process. The appeal process is not arbitration as neither party have signed a legal obligation to abide by any decision and we consider the only real independent route is the Courts. Our claim is not massive, it is the principle that counts. I understand that the Ombudsman is only advisory and they cannot override an actual eligibility decision – only ask the CCG to review (yet again ).
My Mothers case has now been rejected at Independent Review Stage where their response was to just to repeat the grounds around the original outcome. They have not directly addressed any of the areas of dispute we have put forward or the errors made at the Local Resolution Meeting, where they referred to evidence which was outside and prior to the claim period and not relevant to the condition of my Mother at the time of the claim for NHS Continuing Healthcare (CHC). The repeated decision is that Mother required social care not health care. This was a lady in her 80’s who was totally immobile, doubly incontinent, had no conception of time of day, year, place or recognised any person around her or her family. She had to be directly fed and all her needs anticipated and delivered by those caring for her. She had bed sores that required regular attention, she required regular moving that could only be done by two members of staff and with a hoist, she was aggressive to staff on occasions and had suffered injuries in struggles with staff, as well as suffering from Alzheimers she had hypertensive disease and chronic kidney disease stage 3. It is believed she may have suffered minor strokes but was incapable of communicating her condition or any of her needs. I could go on. I am now left to move to a complaint to the Parliamentary Health Service Ombudsman within 12 months. What hope do I have? has anybody experience of this stage of the process??? Many thanks
Hi. We had Mum’s Decision Support Tool meeting last week and they said she should get Continuing Healthcare assuming the verifier agrees. How long does it generally take to get a decision and when should I start chasing them? How easy is it then to claim the money owed? Due to my Mum’s complex health issues we currently pay £1250 per week to the nursing home and £2300 per week to an agency to provide 1-2-1 care within the nursing home. Thanks.
Hi without sounding too flippant you need to find a different care home. A placement within a suitable establishment that provides the care “in house”
I have just heard that my late mums Continuing Healthcare (CHC) local resolution meeting has resulted in the CCG still not awarding her CHC for the first year and 3/4 of being in the nursing home. At the first stage of the retrospective review they awarded her from March 2014 to October 2014. Her original award was from Oct 2014 until her death in Jan 2016. She went into the home in June 2012 and they are refusing her CHC because they say they have no evidence to prove her behaviour.
Social Services will not take part in LRM or the Independent Review (IRP). We had no-one at the LRM and apparently they draught in a social worker from another county at IRP, who will not have any real idea of mums behaviours and case.
I cannot afford legal advice at all. I want to start the IRP ASAP so need to write to NHS England but do not know what I need to say. Do you have any publications to help with appealing at IRP? I refuse to give up.
Mel – we don’t have one on the IRP specifically, but the same tips, information and advice that is on our website and in our book applies to IRPs. It’s a question of building a strong case, domain by domain, highlighting why the needs represent a primary health need and challenge every single thing that has been done incorrectly.
Thank you Angela. I may come back often for help as this is not an area I am overly familiar with. They accept her behaviour was bad at home but changed and was wonderful when she first went into a home but after the second CHC assessment the home owner, dismayed as to why they refused mum in 2013, offered to do a daily diary. She then got awarded.
So a woman in her 80’s with very bad vascular dementia who has documented behavioural issues before entering the home, suddenly stops all the behavioural issues until a diary is kept and the behaviours suddenly start again? And these people are nurses who are saying this? Deluded is what they are and think I’m a complete idiot as well!
If there is no evidence, no matter how high you go there will still be no evidence. Continuing Healthcare (CHC) was awarded for part of the placement – potentially on decline in health status.
I’ve said it before – I’ll say it again – not everyone has a primary health need. Social services can place in nursing homes. Being in a nursing home does not entitle someone to CHC.
That’s not what Mel was saying, Rachel. She wasn’t stating that her late mum should have received CHC just because she was in a nursing home. She was talking about the quantity and quality of the evidence. Just because a care home have not recorded evidence, does not mean the need does not exist. As you can see from blogs and forums across the web, care homes are often notoriously bad at keeping notes for CHC assessments. And just because the NHS assessors may have failed to gather the appropriate evidence does not mean the need does not exist. Very often the ‘evidence’ a CHC assessor will gather or acknowledge is either watered down or inappropriate. This is borne out by the thousands of comments from families on this website.
Ok- but what I’m saying is that if it’s gone to review and there was no evidence there is unlikely to be evidence further down the line. Unfortunately this is probably going to be the case. No point getting hopes up when the outcome is likely to be the same.
I absolutely agree that not one penny should be spent taking disputes further by getting legal firms involved.
That’s exactly what the NHS wants – for people to simply agree there’s ‘no evidence’ and give up. However, in many cases families have sourced and pulled together their own evidence, for example by approaching their relative’s clinicians and therapists directly and asking them to put together more information on actual care needs – both now and in the near future. This is often evidence that the NHS has ‘overlooked’. This is also what I personally have done for relatives, and in two cases it is this that has resulted in my success. In addition, a genuine specialist solicitor or adviser, with solid coal-face experience in this field, can be invaluable.
The fact is Rachel we do have evidence. They have failed to report many things and take into account evidence they have been given. When Mum first entered the home she was ripping her hair out of her head, along with biting herself, lashing out at people and verbal abuse. She had serious dementia. The home is known in the area for taking the most challenging clients.
I WILL go to Independent Review. Just because I do not have all the laws to hand and I cannot afford a solicitor does not mean I do not have an understanding of the fact my mother HAD a primary health need. Even the owner of the home says people with less issues than my mother had got CHC, so he is at a total loss as to why they won’t award.
I have just rung the CCG again after getting their “minutes” of the meeting and decision. A lot of stuff we discussed was cherry picked and stuff that we presented and discussed which was in Mum’s favour has been omitted from the “snapshot minutes” as the lady just told me they were. Not verbatum! “Overlooked” evidence as Angela puts it.
I don’t have the money for a solicitor, but that will not deter me. I believe the fact they ask the Social Services to attend and they refuse, mean that SS are accepting they were responsible for Mum’s care. This means they cannot be questioned on LA limits and may be accepting responsibility illegally. Plus at IRP a social worker from another county comes in to put across the social services view. How they can do that seems utterly stupid as they have no personal knowledge of the client.
I agree not everyone has a primary care need, BUT just because the CCG say there is no evidence doesn’t make that the truth. You were a little quick to judge me I think.
Wishing you well with your case, Mel. Sometimes it comes down to sheer tenacity in the face of what can seem like overwhelming odds – and, frankly, dreadful attitudes on the part of assessors. The longer you can keep going the better. It sounds as though you’re very determined, which is exactly what’s needed.
Hi Rachel no i paid care home fees on my mothers behalf i had power of attorney we have paid £95000 in total including the sale of her flat. After she died there was a charge on property. All this time we have been trying to claim fees back as we feel we should not have paid my mum had several medical needs and had alzheimer’s disease.
You should have had a financial assessment for your mum from social services. Had your mum funds been below threshold they would of helped. Not everyone is entitled to Continuing Healthcare (CHC). Not everyone in care is there because their needs are above and beyond what social services can provide. If your mum was in nursing then the NHS fund the nursing element anyway.
I think one of the biggest things is the assessor not explaining the process in the first instance.
Including money from the sale of her flat- your mums money.
Hi Rachel, when I said I had lost £95,000, what I meant was I had paid care the fees of the above and shouldn’t have as my mother was wrongly assessed. All domains were wrong and differed from GP’s notes, however the ombudsman thought it ok to be refused Independent Review Panel (IRP). I am going to my local MP, but feel I’m probably wasting my time.
So your mum paid her care fees- that’s what you mean.
Hello
Could you tell me how long it should be between the checklist being done and the full assessment? My Mum had the checklist assessment on the 30th January but we have heard nothing since. They did say it would be a while but it is 2 months now. Is this normal and who do I chase it up with it not?
Thanks
28 days- I would speak to whoever did the Checklist or the local Continuing Healthcare (CHC) team. If found eligible would be entitled to have it back dated.
With regard to above, and my refusal by NHS to grant me an IRP the ombudsman agreed it was no injustice, but conceded they should have made it clear that they had changed the rules. Not everyone is on computers. All they say is you should have gone on website. i was told at CCG meeting i was entitled to panel however the ombudsman agrees with NHS. Is it worth going to press with this or local mp or just give up.
Local policies at the time (January 2016) stated after CCG metting i was entitled to an Independent Review Panel (IRP) in Leeds or Manchester. The clinical nurse said she would see me there. In the meantime NHS decided to trial a new procedure i was told by ombudsman that i should have looked on website. All the ombudsman said that NHS should have been clearer, they got a slapped wrist and I lost £9,500. It’s too late for me let it be a warning for others. I can’t do anymore as I cant afford to go to court.
Could you explain how you lost money?
Local policies vs. national guidelines: http://caretobedifferent.co.uk/override-national-continuing-healthcare-guidelines/
what do you mean by local procedures we were denied irp panel metting as nhs said we were outside the eligibility criterie we took case to ombudsman who said there had been discrepencies by nhs but there was no injustice what else can i do i have lost the will to fight on
still waiting reply re refusal to attend IRP panel and judged by ombudsman as no injustice what a laugh total robbery by nhs and no one will listen not even you
Nigel- have you followed local procedures?
It’s very hard to pass comment without knowing the full story. If your not happy first stage is local resolution panel, then independent. But you’ve gone higher. If you’ve gone all the way to ombudsman then you have tried everything.
Please please someone help! I am simply going nuts with this whole thing! We have just had the good news that Dad is eligible for CHC funding. However they say it’s for 3 months from the date of our CHC Assessment back in January to the end of this month (March) where Dad will then need to be reviewed again!
This is not how I understand the rules to be?? I thought the person is awarded it and then in 3 months time from the date of award they’ll be reviewed and then every 12 months.
Also does this mean they’ll only back date care bills from the end of Jan rather than from the December checklist date?
Please help me figure this out.
There will be a review- that’s normal. Whether the area you are in will depend if it’s on time. It’s routine at 3 then 12 months. That’s how it’s done.
The government will release a new date for back dates chc or you can dispute. You would have to complain to the local chc team.
My dad went into hospital with acute renal failure in 2013. While in there he was also diagnosed with CBD (cortico-basal degeneration: a rare degenerative, terminal brain disorder), with Parkinsonism, and dementia. He was deemed eligible for full CHC assessment upon discharge into intermediate care for a month while we prepared our home to look after him full time for as long as we could. After 2 years, his needs had become too much and too complex for us to manage and, during this time, apart from the GP who was very good with dad, the care services that were there for the first month, to help us settle dad back into home, just abandoned us. The Acute Team nurse didn’t answer my desperate calls for help just as we were on the verge of needing hospitalisation ourselves for sheer exhaustion, my dad’s condition just kept on getting worse and I wanted him assessed for CHC again. In desperation, I emailed our MP who acted swiftly, got an apology for neglecting dad from the county head of care services for us and a promise to look into his needs again as quickly as they could.
Dad went into a home in September 2015 and he died there yesterday. In all that time, despite requesting that he should be assessed again, he never was. This is so distressing as he had 3 bad falls in the lead up to his death that I suspect could have been prevented had we got CHC for him and had the choice of sending him to a specialist neurological unit where surveillance could have prevented them from happening. As a background to this, when I managed to speak to the county CHC team about three weeks ago requesting another ‘quick’ full assessment as he was clearly going downhill fast, they came back with the end of April, which I argued against as I felt sue he wouldn’t still be with us then, and they came back with the end of March for reassessment…again, too late for him to be alive for, I thought. I was right. Can I apply for CHC for him post-death as I feel that the NHS Continuing Healthcare system badly failed my dad and also us? If so, how can I do this, please?
If you are going to dispute- sound like process was not followed. The Multidisciplinary Team (MDT) make a recommendation for a panel to ratify. From what you have said you can raise your concern either way stated in the letter.
At stage 1 discuss your issues. However remember this is a health process on health needs- social services are able to offer a level of care too- washing,dressing, food provision, feeding and so on.
To have a primary health need the mdt look at nature, intensity, complexity and unpredictability. That should be explained on the Decision Support Tool (DST).
At my relative’s recent MDT meeting, neither the NHS Assessor nor the Social Care Assessor would offer their scores for the domains only my sister, myself & the nursing home’s nurse were asked to offer scores. In two crucial domains, the nurse was offered the chance by the NHS Assessor the chance to “sit on the fence” & so no score was recorded from her. The DST was therefore not completed at the meeting & so we were not given a chance to disagree with the MDT’s scores. We have now received the DST and it states that our relative is not eligible for CHC. The accompanying letter states that we have 14 days to tell the CHC team, by phone, that we intend to appeal & 6 months to appeal in writing. We have not, however, received anything from the CCG. We believe that the Framework states that the MDT makes a recommendation of eligibility or not & then it goes to the CCG for the decision. There is much that we disagree with in the conclusions the MDT have made and contraventions to the Framework but should we appeal at this stage as we are being told to or wait until we hear from the CCG?
Fred – the process they’ve used is flawed. It sounds as though they haven’t completed the Decision Support Tool (DST) properly and it’s unclear whether or not the assessor(s) have actually sent their recommendation to the CCG decision making panel. Who sent you the DST?
Sorry re read your comment- is the district nurse involved in looking after you father?
RE: Live in Carer
I have been assessed by Approved Mental Health Social Worker with Adult and Community Services Supported Assessment for Social Care and community Care: Care Plan. I have Rape-PSTD and am housebound, and afraid of men. I have a Personal Assistant that takes me out 4 hours a week to attend classes with other women paid by the County Council through Direct Payments.
My current Social Worker who has recently assessed me for Adult and Community Services – My Care and Support Plan for Support Plan Budget (direct payments) – who I see rarely, will not support the Care Plan that was submitted by previous social worker that stated I would need people to either come in my father’s house/my home several times a day or have a live-in carer to look after me. The previous Social Worker assessed me as: Overall Fair Access To Care Services (FACS) Eligibility: Critical.
The new Social Worker has written in the new My Care and Support Plan:
“Despite fully appreciating both X and her father’s accommodation wishes and requested in the play they have been sensitively informed that where consideration needs to be given for “funded provisions”, specific reasons such as “live in carers” etc cannot be guaranteed. Stressing that x will (at the time) be subject to a re-assessment of her needs under legislative framework of the Care Act 2014.”
The previous Social Worker advised us in writing in September 2014 that the Direct Payments I receive will not be means tested as she is under Section S117 of the Mental Health Act which means that any eligible mental health aftercare (NHS / Social Services) should be split between the NHS and local authority via a funding panel and not at a cost to the service user. S117 applies to her because she has been under S3 of the Mental Health Act and still requires Related Care.
The Community Mental Health Team / County Council are trying to get me sign agreement that is asking me to agree to be financially assessed for direct payments, in a Letter of Agreement, to see whether I need to make a contribution and for me try to enter into a contract.
I understand the local authority (e.g. a social worker) has a legal duty under the Care Act to refer a person for a Continuing Healthcare assessment if there is even a small chance the person may be eligible. I am concerned about how my physical needs to be catered for after my father’s death. I am concerned the fact the Social Services budget, unlike the NHS Continuing Health Care has been cut and Social Services will only fund my Care if I am forced to instead to live in Mental Home with men as opposed to the family home, should my father’s health fail or if he died.
My father is 71 and suffers from Depression, is my Carer and Appointee. We have no support from the family, they neglect us. I am concerned he will eventually need a live-in carer should his health start to deteriorate. I do not want the family home sold or him to go into a Nursing Home. What should we be doing? Should be ask for a Checklist to be carried out for my father with the Carers Officer to put him on the radar before a crisis or will this then put me us in weak position? I do not want them to say we are not able to look after each other.
Anonamlous – yes, the Continuing Healthcare process generally starts with a Checklist assessment, whether that’s for you or for your father. Some of the links in the following article may help you further: http://caretobedifferent.co.uk/nhs-continuing-healthcare-funding-28-useful-links/
Can I ask- who is on the section 117?
Hi, 6 weeks go my 90 year-old father had a massive stroke and cerebral oedema and despite be told he would not survive, he can talk (not always lucidly), swallow (sometimes forgets what he’s supposed to do),needs to be given food and fluids but is immobile(has bedsores), doubly incontinent, has polymyalgia rheumatic, is on long term steroids, anticoagulants etc. A CHC checklist was done on one of only 2 days my mum and I have missed over 6 weeks. We found out when a social worker arrived to say ‘your father has no medical needs so is not eligible for nursing care’ We disputed that we had not been informed, allowed to attend, and had questions about the grades in the criteria checklist. The SW said she didn’t know much about them, she just asked if my father had any sores on his bottom – I said I hadn’t looked! She finally agreed the checklist would be redone. (She then said dad was entitled to carers 4 times a day when you get him home but if it takes an hour to feed him they may not have time to do everything, or you could self-fund and I’ve brought a pack for you).
Yesterday a discharge nurse introduced herself by saying that dad had no nursing needs and wasn’t eligible for funding. I told her we were waiting for a new checklist to be carried out in line with national guidelines and she told me that last week the hospital and trust had changed the checklist procedure and my father had no nursing needs. I asked for details of who, when and how this had come about because I wanted to talk to these people and she gave me no answer. She then said she would get a nurse to do the checklist immediately as ‘it’s just done by a nurse’. I refused. Today on the advice of my GP, I contacted Pals who have arranged a meeting with a discharge nurse for me, mum an my husband tomorrow. She has the same first name and I told them if it was the same nurse I spoke to yesterday I would refuse to have a meeting as she was part of the complaint I had just made to them! And we haven’t even got as far as the checklist being done properly yet! I would welcome any advice., thank you
Diane – what a shambles, and the behaviour of the social worker and the nurse is utterly appalling, not least in telling you to self fund. Dreadful. No one can say whether a person will be eligible for CHC until the assessment process has been carried out properly and until it is complete. The guidelines are national and all CCGs must follow them – and abide by case law. This may help you in advance of the proper Checklist:http://caretobedifferent.co.uk/how-do-you-know-if-a-continuing-healthcare-assessment-should-be-done/
After a surgical complication we were advised my mother has complex medical care needs and after the Checklist was completed, a Decision Support Tool (DST) was started and we were asked to contribute as a family. My father died during this process and we were arranging a funeral and burial I asked could the process be halted as it was the worst possible time in which to assess my mother and for us as a family. This was ignored. The person who started the process went on leave. I contributed verbally before she went on leave and was assured my comments would be included in the DST. I then got a copy of the DST and there were glaring omissions in the medical needs plus none of my comments were included, so I spent 4 and half hours going through the 38 page document and the guidelines, writing my comments and submitted them, also I complained that we had not been consulted in a meaningful way, as we had just been emailed the form with no clear idea what it was. Today I’ve had an email to say the DST has been scrapped as the checklist has been repeated and my mother found to have improved so she is not now needing any medical care. I should point out there is no change in my mother’s condition. She had bowel surgery for cancer in August, was discharged with an undiagnosed wound infection and the surgical wound has never healed, which required twice daily dressings, and due to which she is only permitted to sit for a maximum of an hour a day – she has a stoma which due to mixed dementia she has never achieved competency in management of, and epilepsy, confusion and short term memory problems arising from a stroke, which mean she cannot remember how long she has been seated.I was invited to an MDT meeting tomorrow, told if I don;t go I will have no input. Another social worker has contacted me to say that meeting is now scrapped and I have to a attend a discharge planning meeting. I have arranged for my mother to be reviewed by her surgeon again as I’ve said I want an up to date surgical opinion before agreeing to any discharge plan. Is there anything else I can do?
Mairi – the attitude of the assessment team seems callous and uncaring in their disregard for your situation following your father’s death. I imagine it has been a hugely difficult time. In addition, the ‘new’ Checklist for your mother seems to be inappropriate and designed to make it less likely she will secure the funding. The assessors are acting incorrectly in not arranging the date and time of the MDT to accommodate you. You could write to the Head of Adult Care at the local authority and state very firmly that the local authority may be in an illegal position by not being in involved in looking at the legal limit for their care: http://caretobedifferent.co.uk/nhs-continuing-healthcare-should-social-workers-be-involved/ In addition, use the Care Act to highlight the NHS’s failings to the discharge team and/or the assessors: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ Keep going if you can.
My Mum was awarded CHC in August. She had been in hospital for 2 months. She has Myeloma which they have stopped treatment for and was diagnosed with severe vascular dementia. We were given a prognosis of 6 months, more or less. She was being hoisted and was very confused. She was then transferred to a lovely nursing home. She has improved so that some days she is quite lucid and by sheer cussedness has improved walking to the extent that with the aid of a Zimmer frame and two people, managed to walk to the toilet. We were open mouthed when the carers told us. She has a 3 month review coming up and now my Dad is terrified that they will take the CHC away. She is obviously still terminal though, Could they take it away from her ? What do we do now ? I bought your book which is how she managed to get CHC in the first place.
Angela – I’m glad the book was helpful; that’s always good to know. Prepare for the review in the same way you prepared for the original assessment. Be sure you know what scores your mum should have in the review, and be prepared to back them up in each domain. Check the care notes at the nursing home to make sure they are accurate and comprehensive, and raise any concerns about omissions, errors or misleading language in the notes: http://caretobedifferent.co.uk/check-the-language-used-in-continuing-care-assessments/ Even if your mum’s care needs have reduced, they may still be of such a level that she continues to qualify for CHC. Remember also that managed needs are still needs: http://caretobedifferent.co.uk/continuing-care-assessments-2-frequent-mistakes-part-1/
I have come to the very speedy conclusion that this whole system is frankly corrupt. I have now been told that we cannot appeal because and I quote – “As we were unable to complete the first stage of review, we were then unable to complete any further documentation. This means that we have not been able to complete a Care Needs Portrayal and there is therefore no DST. The case has not gone to panel. As the case has not gone to panel, you are unable to appeal the closure letter”.
Yet I have in my possession a Community Care Assessment that describes my late mother in law’s needs as “Critical” and two retrospective Claims Gate Keeping Checklists that have two A’s which I understand represents as someone with particular needs. As my mother-in-law has passed away and all bills have long since been paid by us there is frankly no chance of the money ever being repaid. The fact that it has taken four years to respond to our claim yet they have given us 14 days in which to submit further evidence says it all. Not sure what our next move is. If any.
Fran – what utter nonsense from the CCG. A solicitor’s letter may help at this point.
Good Morning all, and thanks for all the useful advice on the Web Site.
We have just had the decision regarding our Retrospective Review regarding my late Mother in Law’s care fees, which you won’t be surprised to learn was rejected. My question really is, is it worth the hassle appealing? They claim that:
1. records from the care home are no longer available
2. the care home was a residential care home and as such no Funded Nursing Care assessments or reviews are available for the period in question
3. the GP records provide insufficient clinical data upon which to come to a reasoned comprehensive conclusion (which is laughable because had several strokes)
4. the Hospital records provide insufficient clinical data ditto the above
5. Local Authority records – ditto the above
6. District Nurse/Community records – ditto the above
7. Mental Health records – ditto the above
Without wishing to seem cynical, I cannot believe there are no records for a lady that was very ill for some years before she went into care and was still ill whilst she was there until her death.
Your thoughts would be greatly appreciated.
Regards
Fran Shuttlewood
I’m sure Angela will come back to you, but as an ex-NHS clinician I would say this:
Telephone each of the teams and ask if they do have records and for the names of the Consultants heading up the teams. If they say no get the managers name and address and place a formal complaint (Formal complaints stay on record and form part of their quality audit undertaken by independent bodies such as the Care Quality Commission. They are taken very seriously indeed by the managers of the teams receiving them.
Then write a formal complaint to the CCG telling them about the notes and give the names and the hospital address of the Doctors who treated her. As part of the complaint letter to the CCG state that you are appealing the decision.
Good luck
Hi Kevin,
Many thanks for coming back to me and for your help. Unfortunately we have more than a slightly uphill battle. As we lived some distance from my Mother-in-law, my sister-in-law used to deal with her welfare matters but she unexpectedly died. My brother-in-law then took over the batten for a few years and then he also died suddenly. Naturally we took over matters by which time m-I-l was in the care home. It wasn’t until after her death that we found out that technically she should have been offered Continuing Healthcare. We have little or no records of who treated her save for a questionnaire that put her needs as “Critical”. I know which hospitals she was admitted to although the dates will be sketchy – do you think I will be able to get any information just based on her name and NHS number alone?
I have now written to the CCG and told them that we wish to appeal – I don’t see that they can make a decision based on no information and feel that they have just done this to put another case in the “done” pile.
Best wishes
Fran
Fran – the following links will help you: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/ and also this one: http://caretobedifferent.co.uk/care-notes-not-scratch/
Hi Kevin
Thank you and I truly hope you succeed in your mission. It’s very upsetting and just stay strong.
Within a week of being denied NHS continuing healthcare because she was assessed as being too highly so did not warrant funding my Mother died!
Christine Wilson
You may wish to put in a complaint. Complaint letters all sit on file and are read, carfully, by the inpsectorate.
I am sorry to hear your news.
Thank you
When I get my head a bit more straight I will do that and at least one more complaint may help someone else benefit. I knew she was wrongly assessed and I think this was the final straw for her
Its hard, I am waiting for a similar loss. Take care – It hurts – been there before – Warmly, from a stranger – Kevin
Hi Christine
I’m so sorry to hear about ur mum n the way in which her CHC was taken away. My family and I are in exactly the same position as you as my mum was rushed to 24 hour nursing care following numerous stays in hospital for chronic palliative COPD. We have now had our CHC funding withdrawn and are at our wits end. These people do not understand the trauma and pain already being suffered to the person and their families and then stick the knife in further by treating people like this when all they and their families need is support at the end of their life. I am going to appeal for what it’s worth. Sending you and your family my best wishes Bev lowe
So sorry Bev
It’s so so sad. I hope it all works out for you I really do.
I think the decision was made before the meeting even began. It didn’t matter what I said they have their own conclusions. I didn’t want to worry my Mum and said it was a meeting to see if she will go home or stay in the Carehome . The review meeting happened without us knowing the following day as I complained to her doctor . It was at this meeting apparently they told her it was about money and that I wasn’t happy. She died within the week . It is a worry and I got upset at the meeting as I felt they had it all panned out. I was fighting a losing course .
Take care and good luck
We were awarded Fast Track Continuing Healthcare (CHC) one year ago. The three monthly review took place a few weeks back with a recommendation that we proceed onto the ‘usual’ CHC.
Meanwhile the CCG nurse has put forward an application that we are paid on the Personal Budget (PB) funding channel. That goes before the PB panel in the next week or so.
A private contractor has now written to us saying they need to complete a Decision Support Tool (DST) for our CHC.
They said if we are already getting CHC it must be a review and reviews take place once a year.
Is it normal to review CHC using the DST? I know the care plan is reviewed annually. (The agency seem confused and the CCG nurse does not know who they are or what is happening.)
Any information on this most greatfuly received.
TIA
Kevin – Clinical Commissioning Groups (CCGs) remain responsible for Continuing Healthcare assessments and decisions. Even if they get a private contractor to undertake the review, the CCG is still responsible for the way it is conducted and it is the CCG that must make the actual funding decision. The contractor can only make a recommendation. If the contractor is already confused, they are not competent to carry out the review. At a review, current needs should be assessed but the the previous Decision Support Tool (DST) should also be taken into account. You should be fully involved at every stage and invited to input, and there should be a multidisciplinary team including someone from the local authority. The contractor should not do it in isolation. Most alarmingly, if the CCG nurse has no clue what it happening, the whole thing is likely to be a shambles. I would complain very strongly at this point that the CCG needs to appoint competent and well-informed people to carry out the review – and they should have full and up-to-date knowledge of your father’s care needs. They should also consult the daily care notes: http://caretobedifferent.co.uk/care-notes-not-scratch/
Thank you – I have now found out that I seem to be on CHC, but as far as I know no DST was ever done and we are still on Fast Track. The CCG have now told me it is merely a review.
Thanks for the very helpful post and the time it must have taken. I will follow most of the advice (adding it to other advice in your help documents and your superbly readable book.)
I am going to keep notes against an appeal if needed… also as you advise elsewhere.
Meanwhile thank you for this superb site. I am very active on a degenerative illness forum and regularly point people here and then if need be I support them to follow through on your advice. Many of us a grateful to you. 🙂
Thank you very much for your kind words, Kevin.
Thanks for stating denied attendance at an IRP is major flaw. It’s not the only one but they will investigate. Just waiting now for an investigate to act on my case. I will keep you informed as i have taken on board many helpful comments from yourselves. Let’s hope we win. I have been trying for nine years – it has been very hard and stressful. The main thing is don’t give up; that’s what they want. Regards nigel
Hi – we are now taking our case to the ombudsman. We had an Independent Review Panel (IRP) – we were told a full panel was not required, they then told us my mum did not qualify. She has been deceased three years. We were denied our say in the IRP. The ombudsman is investigating our case and hopefully if found in our favour oe disregard of doctors notes, wrong procedure, we hope to claim all fees ie £95000. I will keep you informed.
Nigel – just in case it adds any weight to your appeal to the Ombudsman, this is what the NHS itself says should happen at an IRP. If you were denied your say, that’s a major flaw. https://www.youtube.com/watch?v=yiN5cK50FS0
The whole thing is a scam . My Mother was fast tracked to Care home as she was given End of Life plan because of COPD and not to be have any more recussitation or Bi Pap again. My Mother is on Morphine constant patches. She has been in Carehome for 3 months and leading up to her assessment we noticed that her oxygen machine was taken away. Suddenly she can feed herself, walk with aid to the toilet and suddenly a miracle has happened. The bedsore was looking miraculously better. On arrival for the meeting today the Nurse at the home said to Mum ” Do you want to attend the meeting?” I advised her not to as she was breathless this morning and worried about the meeting. Mum replied “Not really” and the Nurse said its all going to be about money!
She was not eligible for funding. It is an absolute joke!!!! Our family have been to hell and back for the last few years and suddenly she is alright. It is ridiculous.
My brother recently passed away while in a care home, he had been reassessed for his CHC about four weeks before his death and the NHS have paid for his care in full for the last ten days of his life, however he was moved from his previous care home at that time as they were finding it difficult to care for him. Our argument is that they have not paid for the previous ten days, despite his care needs being the same, do we have any right to appeal? And if so what is the procedure?
So sad to hear your brother has passed away, Kate. Yes, you can appeal. Where your brother was actually based has nothing to do with his eligibility. It’s his care needs that count. Indeed, one would hope that he would be moved to somewhere that could care for him properly. This article (above) takes you through the stages of the process. The NHS should have also given you information on how to appeal. You may also find this additional article helpful: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/
The advocacy service in our area advised us to be aware that after the Local Dispute Resolution meeting if we are offered (and accept) another DST, and our mother is then found to be eligible she will get funding paid for from the date of that second DST date. Alternatively if we don’t accept a second DST, and continue our appeal to NHS England ….. and win (a big IF I know!) our mother would get a refund from the date of the first DST (at £1000 a week that is a big refund) So there is a financial incentive at the Local Resolution meeting for the CHC representative to not overturn the original decision but to offer a second DST instead!!
Ingrid – funding should be backdated to shortly after the original Checklist. See page 133 paragraph 9 of the National Framework, which states that funding should be backdated to “day 29 of the period that starts on the date of receipt of a completed Checklist (or where no Checklist is used, other notification of potential eligibility for NHS continuing healthcare)…” Also, the second DST you may be offered does not constitute a new assessment process – it is a continuation of the original one, so the above still applies.
My father has stage 4 kidney disease, pacemaker, type II diabetes, ulcerated and oedemas legs, double incontinence/catheter, has not eaten any food for four weeks is only taking fluids and needs assistance to hold his cup, no longer mobile as high risk of falls. Considerable weight loss and obviously is in low mood because of this.
He has been told does not meet criteria for CHC as he is not ‘end of life’ my understanding is that if he has high primary health needs which are complex and intense etc then he should meet eligibility and that CHC is not just for end of life stage? Is that correct would you know please? Thank you.
Melanie – that sounds like a very distressing situation for you all. You’re quite right; CHC is not just for end of life – it’s for any stage of life. This is made clear in the National Framework guidelines. Point this out to the people obstructing you, and also ask them to show you in black and white where exactly it is written that CHC covers only end of life. They won’t be able to. Also, your father doesn’t have to tick all the boxes for Nature, Intensity, Complexity and Unpredictability. The Framework makes that clear on page 16, paragraph 36: “Each of these characteristics may, ALONE or in combination, demonstrate a primary health need…”
Although my late mother was found eligible for CHC at her last assessment this was revoked by the CCG and my appeal was unsuccessful. My understanding of the process was that my next step was to launch an appeal with NHS England which I did in October 2015, as yet I have had only an acknowledgement that they have received my request but I have heard nothing further.
Please can you tell me how long I should expect to wait for a response and should I now take the matter to the ombudsman?
Thanks for all the information that you publish which I have found so helpful through this daunting process
Chris French
Thank you for your kind words. Chris. This may help – the timescales were announced at the same time as the deadlines for retrospective claims. http://caretobedifferent.co.uk/nhs-continuing-care-review-process-new-timescales/
Thank you Angela. I feel empowered to appeal now 🙂 appreciate your help
My mum had her Continuing Healthcare (CHC) assessment 6 weeks ago and yesterday we heard that she was ineligible for funding. In the meeting she was graded as 1severe, 3high, 3moderate, 4low. When we received back the paperwork the cognition section had been changed ‘all persons present at the time of this assessment agreed a severe level of need, on reflection at the time of writing case coordinator felt this should be high level’ with the note ‘Mrs X comes across as being more cognitively aware than she has been reported to be by her family & carers’ . (She spoke to mum for approx 5-10mins by the lift when she was being taken downstairs!)
There was also another section regarding medication which we felt was high and the assessor moderate & she said we would err on the side of caution but has scored on her sheet as moderate.
At the end of the interview the assessor said she would email the RN at the nursing home when she had finished her report and If she disagreed with the outcome she could follow it up (not that I would have imagined she would) however no one at the nursing home had heard back before the paperwork was received by ourselves yesterday.
Is this normal that gradings can be changed after the assessment? I don’t know whether to appeal or not, if we still had the severe grading would the outcome been likely to be different? Thank you
The case coordinator or lead assessor cannot unilaterally change scores or notes on the Decision Support Tool (DST). His/her opinion does not count for any more than the others in the multidisciplinary team (MDT). And the scores should certainly not be changed without team discussion and without your involvement. Sadly it seems very typical that an assessor will speak to the person being assessed for just a few minutes and then from that claim to have a full picture of need. It is of course ludicrous to assume anyone can gain proper insights into a person’s needs and condition from a ‘quick chat’. Definitely appeal. I do know of people who receive CHC with one Severe score. Remember that the Nature and/or Intensity and/or Complexity and/or Unpredictability of needs count too.
Hi … We have exhausted the local level appeal and are now at the IRP stage. Is it better to do locally or apply to NHS England? It strikes me that the local IRP is just down the road from our local NHS (who gave us the address in our ineligibility letter) .. and we worry about the supposed independence. Advice would be much appreciated before we implode! Thank you for your site. It’s been a godsend and oh so helpful. John
Thanks for your very kind words, John. I’m glad the website is helpful. If you don’t get any response at local level to your request for an IRP, go straight to NHS England and ask for this.
Hi, I am just wondering how long it takes for a decision to be made as to whether my mum will get continuing health care as it is now 4 weeks since we had the meeting.
Thankyou.
The decision should be made within 28 day of the initial Checklist assessment.
There’s something funny going on around stages 5 and 6 in the case of my appeal/s on behalf of my mother. The local NHS appeal process resulted in another decision of ‘ineligible’, but they have made no mention of the independent review and only offered a meeting with a ‘senior manager’. Can I just skip that and let the local NHS know that I would like an Independent Review Panel to be convened at regional level? As far as I can see, all these people at local level are misery inducing thieves and/or idiots and I just want to get a move on rather than suffer their delaying tactics and have to share the air with these people. I could drive a truck through the holes in their decision, so it’s not like the meeting could possibly achieve anything.
Yes, let them know you would like your case to go to an Independent Review (IRP). You can also contact NHS England yourself, Jack.
My mum has been in care for three years self funding. She suffers from dementia. Just over a year ago she was admitted to hospital and we were told she could not go back to the care home and was being placed in a 6 week assessment bed at a care/nursing home. After 6weeks we had a meeting with a nurse and a social worker who went through a series of questions and immediately told us she did not qualify for nursing care. My Mum is double incontinent cannot feed herself she does not know who we are now and is failing in health. The manager of the home informed me in October 2015 she had referred my Mum for an urgent assessment and still nothing has been done. What can we do.
Joy – if the nurse and the social worker did a genuine Continuing Healthcare assessment, there should be formal paperwork to accompany this. It should have been the Checklist to start with and, if your mum got through that stage, the Decision Support Tool. In addition, you should have been informed, involved and invited to input. If these things haven’t happened, make a complaint to the NHS Continuing Healthcare team and also the Head of Adult Care at the local authority. You may find the following two links helpful: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ and also this one: http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/
I have recently appealed an NHS CHC decision for my Mum and I’m just waiting for the local resolution meeting to be set up, they say within next 4 weeks.
I found a document ‘Case for Change 2016’ made public on 11 Feb 2016 on the CCG’s website. Easy to read but the parts which sparked my interest relate to CHC (obviously I suppose) are on pages 26 and 30.
On page 30 and top of the opportunities for change list which can be done immediately is:
‘Reduce amount of money being spent on continuing care by contining to closely manage the eligibility criteria for those applying for continuing care and working with providers of continuing care to reduce the cost per person’
How can a CCG manage the eligibility criteria? My understanding is that these are the same for everyone wherever they may live.
I know it’s cynical but it does go some way to confirm my own feelings about my Mum’s assessment.
Any advice or comment you may be able to give would be really appreciated.
Many thanks
Julie
Thanks for mentioning the document, Julie. I agree that it sounds highly questionable, and it’s hard to see how the motivation behind the phrase ‘manage the eligibility criteria’ could be anything other than unfairly stopping people receiving the funding.
Further to my previous post, I spoke to the spokeswoman again and told her I would be appealing the decision. She reiterated, when pressed, that she could not release any details of the meeting because it was not in the public domain, however she did say that `the panel felt for example that the section of the DST on skin condition had been `overstated“. Very clever of them as none of them have met my husband, so how can they conclude that ? Subsequently I have had a phone call from the social worker (still haven`t met her) who asked lots of questions (my carer`s assessment perhaps ?) then said we would have to have a financial assessment. I have been busy contacting all professionals involved with my husband`s care, GP, Consultant, Parkinson`s nurse, daycare manager,homecare provider etc to request supporting letters for the appeal. I also have photos and videos on my ipad but I am just hoping I will get the opportunity to show them.
Sounds like there have been so many mistakes made by those involved. Also, keep in mind that an MDT must comprise people who have direct knowledge of your husband and his needs. See National Framework page 27 paragraph 80: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf
Thank you Angela. I contacted PALS and they gave me a contact who is `spokeswoman` for the Panel. She told me, in effect, not to bother to complain `as they follow the National Guidelines although each CCG operates differently`. She declined to answer the questions in the letter I had sent asking for clarification on which points we had fallen below the requirements and also said that it was a`closed` meeting so there were things she could not answer, i.e. who was present at the meeting, a copy of the minutes and what `evidence` they looked at. She also said that it was the responsibility of the people (Community Matron & OT) who drew up the DST to include any of `my` evidence. She was keen to offer me a carer`s assessment and told me to send in a letter of appeal if I so wished !
That’s ludicrous! And sadly not unusual.
My husband has just been turned down for CHC funding, after a 9 month wait since the original application. The second assessment was done in June by our OT and the District Matron who took it upon themselves to push forward the second stage (with input from us too), as they could see that matters had become considerably worse. My husband has PSP (Progressive Supranuclear Palsy), a degenerative, progressive brain disease that is incurable and terminal. He scored Severe on several points and I have been expecting to be called for a meeting of the local panel, however I have received today a letter stating that ” the Continuing Healthcare Panel looked at all of the evidence available. They then considered the nature, complexity, intensity and unpredictability of his care needs. …. It has been established that `P` does not have a primary healthcare need of a nature … to meet the eligibility for NHS Continuing Healthcare Funding”.
Apart from helping to answer the questions on the original and second applications, we had no input into this decision and we have never met our Social Worker. I have no idea what `evidence` they have looked at, or if any other things were considered. I would have welcomed the chance to appear in person. What should my next step be ?
It sounds as though the assessment team have wrongly excluded you from the process, Barbara. This is a clear breach of the National Framework guidelines, which promote the involvement and input of family. Also, if your husband scored several ‘Severe’ scores, it would seem almost certain that his care needs are well beyond the legal scope of the local authority. This means his care is by default an NHS responsibility and the NHS should pay (through CHC). Complain strongly about the flaws in the process and state that you will be appealing. Also, write to the Head of Adult Social care at the local authority and make it clear that the NHS are putting the local authority in an illegal position by passing responsibility to the local authority. This article may help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/
My mum has been assessed and it has been reccommended by the MDT that she is elegible for CHC , however the quality assurance panel felt the evidence of eligibility was not clear and may have been affected by the hospital environment. So in order to ensure an appropriate assessment in the right environment they have advised to transfer to a nursing home placement and reassess. This assessment will be carried out 6 weeks following discharge. They have agreed to fund the placement fully until the outcome of this review. Any advice would be gratefully accepted.
Thanks for your comment, Cathy. It sounds as though your mum has been given 6 weeks intermediate care funding. This sometimes happens when a person’s ongoing care needs are not yet clear. I don’t know if that’s the case with your mum, but it can be part of the normal process. The vital thing at this point, though, is to make sure she is properly assessed for CHC before the 6-week funding runs out and, if it hasn’t been done properly within that time, to insist the funding continues until it is done properly.
I am fighting the NHS over the continuing funding for a 95 year old friend (I hold EPA) who has Parkinson’s and all the effects of this condition, suffered a few stokes, is completly immobile, unable to feed herself or drink, has severe swallowing difficulties associated with Parkinson’s, is doubly incontinent and has dementia plus others conditions. She is in a nursing home and was fast tracked for continuing funding in February 2014 when the hospital advised she was dying. Since then her condition has fluctuated, 2 more strokes, one emergency admission to hospital, all the time her condition does deteriorate. I have now been advised that a MDT will be held on 17 June 2015 as the NHS feel her condition has improved and that she should no longer be funded.
My question is about the review answer above where you state:-
‘The annual review is routine and should be done properly, and funding can only be removed if it can be clearly shown that care needs have reduced below the criteria for funding’
Could you please tell me where, in the legislation this can be found i.e. ‘clearly shown’?
Thank you in anticipation
What I mean is that the review must be done properly and all domains fully explored and all care needs properly assessed – and by the right people. This is the only way for it to be clear (clearly shown) whether or not a person remains an NHS responsibility.
Hi Angela,
We bought your guidebook and studied all your videos etc about NHS Continuing Care and after a very long assessment meeting, in which we kept going back to the lessons we learned from your stuff, we were granted funding for Dad. We have had an annual review meeting 4 months ago with only the NHS reviewer and ourselves present. The NHS reviewer kept saying that the review wasn’t important as we had had the assessment meeting and this was just going to take 5 minutes to have a quick review.
She tried to zip through every item with an airy wave of the hand, but as in the first assessment, we insisted on going through each item in detail, consulting medical records, etc etc to ensure that Dad’s true needs were being evaluated. The NHS reviewer was quite tetchy as she obviously didn’t want to go through this.
That was 4 months ago and we haven’t heard anything. So we would like to thank you from the bottom of our hearts for the invaluable advice you have provided; and to ask 2 questions:
1. Is the annual review “not important” as we have already had the funding assessment, as the reviewer stated?
2. How long do they have to write up the review and inform us of the decision? If they were to tell us after 6 months that funding was withdrawn would that be backdated to the date of the review and Dad would have to pay up for the last 6 months? Or would it be from the date of us being informed? I can’t see it documented anywhere how the process is supposed to work.
Many, many thanks.
Thank you for your kind words, David, and I’m so glad you managed to secure CHC for your father. Well done for persevering. The annual review is routine and should be done properly, and funding can only be removed at a review if it can be clearly shown that care needs have reduced below the criteria for funding. Normally it’s a couple of weeks for them to let you know. Sadly, nothing surprises me any more about the way some assessments and reviews are carried out, and the lack of information and response from the NHS. Normally if funding is going to be withdrawn, the letter you receive would give you a few weeks’ notice and your father would start paying from that point – not from a date in the past.
Angela, I bought the excellent ‘How to Get’ document & will follow it closely (following the Assessor’s opinion that my father does not qualify for CHC). I have a question about the procedure aspect of the DST: In the DST I attended, it consisted the Assessor, the matron of my father’s nursing home and myself(he has multiple health issues including heart & kidney failure & dementia and is immobile, doubly-incontinent in a bed able to do little more than raise a beaker to his mouth). In addition, the meeting started without me (although, to be fair, the letter advising me of the appointment did state that it would – I hadn’t read your document then!) & included the assessor speaking to my severely disorientated and confused father directly. Is there any aspect of this I can use to object? Thank you.
Hi Sarah – Yes, there are several flaws there: 1) There should have been a local authority representative; this is absolutely vital: http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/ 2) The meeting should not have started without you, regardless of what they told you beforehand 3) They should have carried out a Mental Capacity Assessment for your father before doing anything.
NHS funding; Be Warned!
Last week I participated in a meeting with an NHS assessment nurse and my father, who is in a nursing home in Gillingham, Kent to see if the NHS would contribute to my 92 year old fathers nursing fees. She produced pages of a tick box score system which apparently goes to a local panel of ‘professionals’ for them to decide if they would provide funding.
My father is currently bed ridden, doubly incontinent, unable to feed himself and can hardly move. Yet I get a phone call today to say that ‘the panel had met and deliberated my fathers case, and had decided that he was not entitled to any funding because he does not meet the criterion’
One has to question just how ill do you have to be to meet the ‘criterion’?
it was quite clear from the start that the scoring method was crudely weighted to ensure the NHS gets away with paying nothing. For example; my father, double incontinent and bed ridden On that page the score was ‘MODERATE’ as it was for most other pages as there is a higher level of illness with the classification of ‘SEVERE’ In this case, to qualify you have to have a daily surgical procedure for your incontinence!
How can a government department get away with such cynical trickery and treating people as idiots? The meeting was a charade, a waste of everyones time and I wonder how so called ‘professionals’ can bring themselves to participate in such a dishonest sham.
Previous comments:
September 29, 2014
Reena wrote…
My mother had a planned operation and has been left with a large abdominal wound. After discharge home, she was poorly managed in the community and admitted to a rehab unit for some help with wound management which requires a special dressing and machine called VAC therapy. The rehab unit have told me they are “doing a favour” to my GP for admitting her. They started the Continuing Care process for short term funding for her health needs (they were thinking a nursing home placement until the wound heals – she will require another operation for skin grafting in a few weeks’ time). The checklist was completed and she had 2A and 4B. We completed the full assessment paperwork today. Then, very randomly, the Matron told me they will discharge her next week anD when challenged she said this process can be done from her being at home. Can I just check – does my mum have some rights to remain there until the process is completed? (i.e. assessment meeting and possibly appeals). She mobilises well and doesn’t have any more rehab needs per say, which is probably what annoys them.
Reena – thanks for your comment. Insist she stays in rehab until the full assessment process is finished – or they will have to pay for all care at this point. Check out page 25 paragraph 74 of the National Framework: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf
In an assessment, all relevant information and evidence should be taken into account, and the assessment team should include people who know and understand the day to day care needs. I can’t say if it’s worth appealing without looking into an individual case but if you know the needs were downplayed and the scores are wrong then start an appeal. Most assessors act wrongly in assessing ‘managed needs’ instead of the underlying needs, even though it’s clear in black and white in the CHC guidelines that assessing managed needs is entirely flawed. Assessors seem to think they can be their own judge and jury and simply ignore their own guidelines. The CHC assessor also cannot make the actual funding decision at an assessment – only a recommendation. The actual decision is made afterwards.
Dear Angela,after mum’s CHC assessment we were told she needed 24hr nursing care,she scored 1 high and 5 moderates in the care domains so she did qualify for some NHS funding ie. £109/week,I am thinking about appealing because it was stated that mum’s medical problems were easily managed,, she has been in the nursing home for a month and was readmitted to hospital today because her oxygen levels are worryingly low and she is very drowsy it is difficult to treat because she retains carbon dioxide.I would be interested in your thoughts please.
Rose. West Midlands.
Hi Angela! I purchased your guide on how to avoid care fees, hoping it would help our quest to receive Continuing Healthcare for my husband, whose health was damaged by the NHS, by giving him radiotherapy to his brain (prophylactic- he never had a brain tumour)-causing him to be unable to walk, doubly incontinent, verbally aggressive, permanently on steroids, warfarin, and with severe cognitive impairment. We have just had a meeting to go through the decision support tool “farce” and were turned down. Before we even had my husband’s health needs assessed, prior to the decision support tool meeting, a clerk in the CHC office told me we wouldn’t succeed, simply because the district nurse doesn’t routinely visit- she was right! Please advise if it’s worth appealing against the decision-is it ever overturned? Also I’d like to know if my husband’s health records should have been taken into account? And surely someone at the meeting should have actually known him/his health needs, medical history, and prognosis? The only person in the room who knew us both was a social worker who works in the hospital, so had seen us 2 or 3 times.
The “scores” were 3x high, 1 x severe, 4 x moderate and 3 low. Continence scored medium, and I believe it should be high, and mobility should be severe, not high, so I intend to raise those points.
In domain 12 , as per your guide, I listed several things – unable to get blood from him, extreme fatigue/tired and asleep most of the day, on long term steroids, lymphodema, poor oral hygiene (unable to open mouth wide), had 2 osteoporotic fractures to spine. – ALL of these items were disregarded, and by this point, I had “lost the will” to argue!
I look after my husband at home, with help from carers who come in to wash him, get him up, then back to bed at night.
When they called me back into the room, to tell me of the decision to deny the claim, I said “so if he had to go into a home to be looked after, if I could no longer manage, you are telling me that he could go in to a residential care home, being looked after by carers?” And the CHC woman replied “No, he would have to go into a nursing home!” Surely that says it all!?
Any advice you can give would be very welcome – many thanks, Gail Meadows
We ourselves are anticipating ineligibility in our attempts for funding. Our elderly mother suffered two strokes some months ago and as the weeks have gone by her savings have been grabbed at a horrifying scale.
We have gone through the Checklist and Mum qualified for Full Assessment after being placed in the A or B sections for most of the 11 areas. The Full Assessment placed her in High or Medium for seven of the Domains. And as a result were told we are unlikely to suceed in our attempt for funding but of course we will try.
Our chief concern is how we are going to argue our case. We have no qualified medical strength and cannot dispute such decisions but we know that Mum certainly needs 24 hour nursing care. In your Care fees document (which we have found such a terrific help and Guidance) there is regular focus on this term “primarily healthcare” and we just cannot understand why this has to be so minutely studied. Whether our Mum scores A or B or High or Moderate she still needs every day to be hoisted and delicately fed and given Physio and skin treatment. She has very weak understanding of what is going on, is doubly incontinent, needs to be monitored as she sleeps and suffers pain. I could go on but we are asking how on earth this cannot immediately qualify as “primarily” in need of “healthcare” We just despair at her situation and wonder how on earth the NHS (who dismissed her from a hospital bed because there was no more they could do for her) will not readily pay up. Gasp!
Thanks for your comment Chris. You are no alone in feeling powerless to dispute NHS decisions. However, you don’t need medical knowledge to appeal, and you can dispute any decisions you don’t agree with. It comes down to your mother’s day-to-day health and care needs and risks, rather than medical diagnoses. If the majority of her needs are health needs you may have a good case. The NHS will also look at complexity (how one ‘domain’ affects another, intensity (how much care is needed) and unpredictability (which in many cases is a red herrring – as the landmark court of appeal case for Pamela Coughlan showed: Ms Coughlan’s needs were stable, and yet the judge ruled that she still qualified for Continuing Care.