NHS Continuing Healthcare gatekeepers: stacking the deck to ensure you fail
There are several NHS Continuing Healthcare gatekeepers in the care system, and families report obstruction and delay from many sides when pursuing an NHS Continuing Healthcare application.
Many feel that NHS Continuing Healthcare gatekeepers are deliberately stacking the deck to ensure you fail – to suit their own agendas.
Continuing Healthcare case study…
(Names have been changed)
Stephen Chamberlain sent us a very moving account of his battle with the NHS for Continuing Healthcare funding for his mother’s full time care.
Stephen’s experience highlights the appalling way families are often treated in the Continuing Healthcare assessment process. It shows the entirely unacceptable obstruction, maladministration and delay put in the way of providing care funding for people with nursing needs.
His story also shows how funding maladministration does not just come from Continuing Healthcare teams. Others in the care ‘system’ seem to have their own agendas in preventing funding being awarded. Indeed, those you may believe to be your ‘friends’ in the process are not always on your side. Proper Continuing Healthcare assessments are often overlooked by the responsible authorities and guidelines deliberately ignored. It indicates that contempt for proper process and for the law are part and parcel of the culture of ‘care’ in the UK.
Stephen explains…
“In 2009, my mother (then 89) was living in her own home, despite early signs of Alzheimer’s. But that August she had a fall, followed by a rapid decline in her health. She was unable to walk, doubly incontinent, and her mental state was severely affected. It was obvious that she would not be able to return home.
I had a meeting with someone from the NHS to discuss a nursing home placement and funding. He opened his briefcase and spread out all the paperwork. Although quite attentive and supportive to start with, as soon as he realised that my mother owned her own house and was therefore, he said, ‘self-funding’, everything changed.
All the paperwork was swiftly replaced in the bag and a broad smile appeared on the man’s face and he said something along the lines of, “Well, you’re on your own then.”
He gave me a list of care homes in the county, told me to choose one and said the hospital would have my mother ‘delivered there’. With that he made a very rapid, very jolly, exit.
Next, I asked the hospital about an assessment for my mother. “Don’t worry about that, she’ll get one as soon as she gets to a care home”, I was told – repeatedly.
In September 2009 my mother arrived at the nursing home I had chosen. The first questions I was asked were, “Where is her assessment?” and “Why didn’t you get them to do it at the hospital?” This was followed by, “Well, we’ll have to do it – and that could take six months.”
She had a Continuing Healthcare assessment in January 2010, and I was informed in March that my mother would not receive full funding, but would receive Funded Nursing Care, plus £320 per annum for incontinence products. This would be backdated to September 2009.
The assessor told me that, in her opinion, my mother was a borderline case for full Continuing Healthcare funding. I was then told that a further review would be carried out in 12 months. In August 2011 I requested a new Checklist assessment be done for my mother because, having done a lot of research, I thought my mother was now definitely eligible for Continuing Healthcare at this point. Her condition had deteriorated considerably since January 2010, and I made a formal request for this Checklist.
Delays in Continuing Healthcare assessment process
Over the next 13 months I repeated my request many times, verbally and in writing. I got a variety of excuses from the care home manager, here are some examples:
“You don’t want to bother with that, so much hassle. Just wait till she runs out of money and the NHS will pay for everything.”
“She has Alzheimer’s, you’ll never get it.”
“The (local) NHS are really strict, you haven’t got a chance.”
…and, “We haven’t had time to do it, we’ll do it next week.”
Eventually, after a lot of pressure from me, a Checklist was finally done in September 2012. Two months later I had a letter to say my mother had got through the Checklist stage and could now have a full Continuing Healthcare assessment. This assessment took place in June 2013, almost 9 months after the Checklist had been done.
I asked to be present at the meeting and did lots of homework in readiness. I was expecting a Multi-Disciplinary Team to be present, with the relevant experts in different fields. However, instead there was an NHS Assessor, my mother’s doctor (who never actually said a word throughout the meeting) and the care home manager – the very same person who had spent over a year preventing a Checklist being completed.
Hidden agendas played out by NHS Continuing Healthcare gatekeepers
I have to say that I was very impressed by the NHS assessor. She was thorough and fair and dealt with everything very sympathetically. On the other hand, the care home manager argued against me throughout the meeting. One example was to do with food and nutrition. My mother was very slow at eating, easily distracted, constantly forgot the food was there and refused assistance. I explained this to the assessor. However, the care home manager said, “Oh no, she loves her food, uses a knife and fork, great appetite…”, etc.
The same thing happened in several of the other care ‘domains’ (categories of health needs) that were assessed.
A few days later I had a call from the NHS assessor. She said she had been back to the home and watched my mother at lunch. She totally agreed with what I had said, and adjusted her assessment notes accordingly. However, five weeks later I was informed that my mother was not eligible for Continuing Healthcare funding.
The decision seemed to boil down to the supposed rule that you cannot ‘double score’ in an assessment. This was something the care home manager was at great pains to remind us of in the meeting.**
Repeated requests for reassessments
In November 2013 I formally requested another new Checklist assessment. My mother’s condition was considerably worse and she was now also having treatment for breast cancer. I repeated my request several times.
After being promised several times by the care home that the Checklist was about to done, in December 2013 the care home manager told me that they wouldn’t do it. When I told the NHS Continuing Care Team about this they said, “Oh, no, you just have to ask for it.”
When I explained the problem they said they would contact the home directly. I never heard from them again. My mother died on the 20th February 2014. By that time she had paid over £200,000 in nursing care fees.
Personal insights about the Continuing Healthcare process
So, what have I learned from all this? It’s hard work. People advise you to keep pushing, to keep being bloody minded. And you’ll make some enemies. If you’re not prepared to do that, not prepared to spend all that time and effort, I would seriously consider just walking away from it.
Get help and know your subject. Care To Be Different’s advice – and the books and newsletters – have been a great help. Remember you are just one person fighting at least two large organisations:
On the one hand you have the care home, or in most cases a company that owns a chain of homes. In my mother’s case she was paying about £900 per week to the home. If the NHS paid for her care (i.e. via Continuing Healthcare funding) the home would have received around £600 per week. In other words, a loss of income of over £15,000 per year per patient. No wonder the care home seemed so keen to keep my mother self-funding.
On the other hand you have the NHS, under enormous and well-publicised financial pressure. Many families find themselves having to do battle with the local authority as well.
You have to be thick skinned. When discussing Continuing Healthcare you are continually told it’s nothing to do with money, and that it’s all about giving the patient the appropriate care. You are made to feel dirty and mercenary if you mention money, when, let’s face it, it’s all about the money.
But more than that, for a family it’s about the principle of free healthcare for those who have paid into the system all their lives. You’re up against at least two sets of people who have a vested interest in undermining your confidence, making you feel dirty and uncaring and just interested in grabbing your parent’s money.
Legal duty to apply for Continuing Care funding
But see it from the other perspective:
You have the Lasting Power of Attorney. Your job, by law, is to protect and carry out the wishes of that person. If their wish is that their hard earned money, or as much possible of it, should be passed down to their children, then that is what you have to do. And if their care needs are such that the NHS should pay, you have a duty to apply for and fight for that funding.
Writing to your MP can backfire on you. I wrote to mine after I had been waiting 5 months for an assessment. In the letter I explained my mother’s case, and I asked him what his views were on the Dilnot recommendation that care fees should be capped at £35,000. His response was to write a letter to the head of the local NHS, basically requesting that my mother be bumped up the queue. This was not what I wanted.
I had to wait another 4 months for an assessment, and I was probably marked down as a trouble maker in every NHS office in the county. I never did find out what his views were on the Dilnot Report.
So did all my efforts over the past 4½ years have any effect at all? Probably not. But would I do it again? Yes, probably.
In hindsight, should I or my mother have done anything different? Yes. My mother should have made preparations many years in advance to make sure the assets she spent a lifetime building were not sitting there ready to be swallowed up by care fees.
Now that the dust has settled I am going to make sure the same thing doesn’t happen to me. I just imagine me, sometime in the future, lying in a care home bed, unable to speak, but silently screaming at my family to protect as much of my money as possible, legitimately, while they can – and to not worry about who they upset or how ruthless they have to be. And imploring them to just not give up.”
We’re very grateful to Stephen for sharing his story here. It highlights some of the appalling attitudes and behaviours that prevail in the care system, and it is clear there is often little regard for established guidelines or for the law.
(** A note about ‘double-scoring’: Contrary to what the care home manager in this case study was implying, the Continuing Healthcare guidelines clearly state that all care need should be recorded in all relevant domains, because it is individual care needs that are assessed – along with their impact on other needs in other domains.)
Have you come up against similar hurdles to Stephen?
Read more about how to get assessed for NHS Continuing Healthcare
What to do if your relative is in hospital and needs full time care
I first asked for a CHS assessment in November 2012. I heard no more until my mother was moved to a different care home. I again requested a CHC and in January 2013 we had the initial assessment which recommended a full assessment. I only received the copy of the assessment on 14th March after contacting the assessor several times to gee them up. When I received it I was astonished by the amount if inaccuracies. Mum was referred to by a completely different name at one point. It stated throughout that during the MDTM attended ny myself and a particular nurse etc. I have never attended a MDTM with this particular nurse or any other meeting for that matter. Apart from that and the other inaccuracies at the very end it stated that my mum is female, (correct) she is 85+ (she is 82) and does not have a disability under the DDA. Mum most definitely does have a disability covered by the DDA. I have waited all this time and to add insult to injury, they have turned her down saying her needs are social not medical. Mum has suffered mental health problems all her life, she now has end stage dementia, has completely contracted lower limbs, cannot do anything at all without two people to help, had a nasty stroke in 2011. She is assessed as having two severe needs, two high needs, the rest are medium and one low and one no needs. How can they turn her down?
I should have said I received the assessment on 14th March 2014.
Thanks for your comment, Andrea. You’re right to raise those points – and 2 Severe scores is (according to the National Framework itself) a clear indication of eligibility. I’ve heard many people say that when they read the assessment notes for their relative, it’s like reading about a completely different person – and the notes are littered with inaccuracies. It shows zero respect from the assessors. In your case it sounds like they have really messed up and don’t have a clue what was actually said and done in the assessment. Appalling delays, too, and gross incompetence. I’d suggest a swift letter to the CCG, the CHC team, all individuals involved and also copy it to NHS England.
Hello
I find your website very authoritative. Is the information on it in accord with NHS/Social care guidelines? How often is it updated?
Is there a Government document that provides the same information please?
Thank you
J Reardon
We add a new article on average once a week and the other pages are updated as an when needed. You can find the government guidelines about Continuing Healthcare funding on this page of the gov.uk website: https://www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care – but bear in mind that the gov.uk website contains the theory, but doesn’t highlight what goes on in practice. The information on our own website is based on those government/NHS guidelines, but crucially we also include insights and advice to help people navigate the obstruction and maladministration that sadly seems to go hand in hand with the Continuing Healthcare assessment and appeal process.
After many months of agitation and many attempts I secured Continuing Health Care Funding for my wife. Not within the timescale laid down, but eventually. The stress and strain however did nothing for my own health as I watched £3,600.00 each month going out of my wife’s lifetime saving.
I would fully endorsed the need to stick at it and I had arguement over the meaning of the word “or” in the DST. The NHS maintained they were entitled to add all the or’s together when assessing if my wife was entitled to a particular outcome on the DST assessment leading to Continuing Health Care Funding.
Having on many occasions asked which English dictionary they were using and did the NHS have a different version to everybody else, they finally conceded that it meant either ‘one or the other’ in the sub clause and they could not add all the sub clauses together to suit their interpretation of the DST instructions on how to complete the form.
They were on more than one occasion reminded that their duty was to carryout an impartial assessment based solely on the facts and to include ‘All’ the ailments when assessing clause 12 and not only use those that supported their case. It fell to me to gather all the facts by chasing each part of the NHS to give the reports and diagnosis for each ailment to the assessment team.
Then having agreed that my wife was entitled to funding they sent me yet another refusal. This was quicky over ruled and classed as an administration error within 6 hours of my receipt.
The date to which the funding applied was not the date based on the risk assessments that justified the outcome. These were 4 months previous and the first refusal was 4 months before that.
Eventually you will suceed and you will get some of the cost back, however unless you are prepared to spend many hours, weeks, days and months, even years arguing your case you will not get back what the Act says you are entitled too.
I probably got back 40% of what my wife was entitled to and then I ran out of steam because my own health was suffering.
This is entirely wrong after a life of us both paying our NI stamps and working full time for many years that the savings we accumlated to make our old age more comfortable, so we were not a burden to the state or our family. It was not put away to fund our NHS healthcare if either of us became ill.
My message to anyone in the same situation is don’t give in, don’t make your self ill, but keep going if your loved one is entitled to full funding make sure you get the payments from the time you are entitled .
One thing that sticks in my throat is that if we had not worked, not saved or spent all our money for fifty years then the state would have paid for everything.
THAT CANNOT BE RIGHT. PLEASE NOTE I AM STILL PAYING TAX FROM MY PENSIONS AT THE AGE OF 74, FOR OTHER IDLE PEOPLE TO GAIN THE BENEFIT.
Well done for securing the funding for your wife. As your story shows, it can take a huge amount of time and energy – and assessors in many instances seem to think they can act with impunity and for their own ends. Sadly, many people would not realise that the actions of such assessors are wrong, and so families may simply accept what they’re told. The ‘or’ thing is a really good point to keep in mind; other assessors have tried that one. It defies belief that they try to redefine the meaning of the word!
An initial assessment for my mum, who has severe MS and has no movement left whatsoever, was submitted by her social worker in July 13. Having heard absolutely nothing since then I’ve been trying to find out what’s happening with her full assessment after waiting 8 months already!
I finally managed to speak to someone last week who confirmed that they had received it, but that nothing had been done with it as they “keep getting diverted onto different areas”! When I asked how long before it would be looked at, I was advised to ring the complaints department as then they’d have to allocate someone to take it forward! How can it be right that you have to complain before anything gets done!?
All this just fills me with nightmare thoughts. I’ve been learning on the job, managing for my mother in a nursing home after her bad stroke and now terminal cancer. She was refused funding a year or so ago. It’s quite enough to just manage their financial affairs let alone fight the entire NHS which I now loathe as a corrupt organisation who are prepared to treat others who are younger for many months or years for free and send hard working elder tax payers into enormous expense for which they’ve already paid through tax. They have funding for those with the right illnesses at the right age but not for anyone else. It cripples the health fighting this lot in the dark and the NHS rely on this as the families can’t cope with fighting that as well.
I think those who manage to take the NHS to court to get the fees after death should impose heavy fines for the NHS who are proved to have ‘mis-assessed’ the sufferer in life. Refunding at a later point should not be an option, but a strict process to get it right in the first place. Then perhaps the law could impose on the NHS. I notice the NHS now add that employing lawyers won’t make any difference or speed things up. A local friend only won one months fees back after several years with lawyers when his mother was bed bound and curled up in a ball unable to do anything. It put me right off.
I notice here that in spite of all the information here if you want help you are charged again for that, no thank you. I can’t face any more stress.
Thanks for your comment, Vanessa. People do succeed in securing funding and in getting back fees wrongly paid, and it can certainly be worth it. Everyone’s situation is different. It certainly can be exhausting, and I understand that only too well from first hand experience. NHS assessors seem to hope people will just give up and go away, and I believe they need to be held to account. There is lots of information on this website to help, and lots of useful articles on our blog. Many of the charities have free helplines for general advice on Continuing Healthcare. At Care To Be Different we provide specific one-to-one guidance and advice to help people through their own Continuing Care application and appeal and, yes, we do charge for that advice.
Stephen’s tale is very familiar. I did not battle as long as he did but I did spend a lot of time and effort trying to get continuing care for my mum, who – by the time she was assessed – had dementia and could do nothing for herself. Her skin was in a terrible way and she always had new sores.
The assessment was done by someone from the NHS and a local authority rep. The latter was very sympathetic but that didn’t really help. There was also a nurse from the home present who had not been there very long and barely knew my mum so she could not back me up on issues I brought up. What shocked me most was that they didn’t even look at mum until after they had decided that she did not score enough points to get the payment. Her needs were not complex enough apparently. They did go in to the dining room where she was having her lunch afterwards and both looked rather sheepish when they saw her.
I was girding my loins to appeal against the decision and spent time going through mum’s file at the home. I was shocked to find that much vital information was missing. There was not even a mention of a hospital admission when she fell and broke her hip. Quite a few statements were wrong or misleading. There were also several pages from another lady’s file mixed in with mum’s.
In the end mum died before I could instigate the appeal and I was too depressed about it all to try and get anything refunded after that. What is worse is that my friend managed to get the funding for her mum with hardly any trouble at all – in fact, the home suggested she should apply for it – and she was in a much better state of health than my poor old mum. People in different trusts obviously have very different experiences.
The people who do so much to prevent frail and sick elderly people from getting continuing care should be ashamed of themselves. In the end my mum was in a home for a decade and hundreds of thousands of pounds were paid out for her care. I am now responsible for a stepmother and I am dreading that I have to go through the same sort of thing with her. Good luck to anyone who tries to get this payment.
Mum is in a hospital in a London Borough. We have been given a public information leaflet on NHS continuing care that indicates that there are two assessments – firstly the Checklist tool, then the Decision Support Tool. At first we were told by the hospital that Mum didn’t qualify for NHS continuing Care because she would be cared for in her own home, and she doesn’t exhibit challenging behaviour in the hospital. This is despite the fact that she has severe dementia, and five other significant physical health problems. We were told that NHS Continuing Care was only for those who are to go into a nursing home. Eventually, after raising a complaint that this guidance contradicted the NHS Continuing Care information, we got agreement from the hospital that Mum would be assessed.
We were then given two pages of an 18-page London Health Needs Assessment (LHNA) form and asked to sign, to say that we had seen the whole 18-page form and discussed its contents. Of course, we did not feel comfortable in signing, because we had not been given the opportunity to view and discuss the 18-page form. We have repeatedly asked for an explanation as to how this LHNA form affects the checklist tool and the decision support tool. We have asked to see a copy of the ‘local protocol’ that the region is following. We have not received any satisfactory reply. We have not been given a copy of the ‘local protocol’ as mentioned in Annexe G of the National Framework (pages 137 to 140). We have had two three-hour meetings at the hospital concerning my mother’s care needs. The LHNA form had some significant omissions and we have requested corrections, although we are uncertain of the implication that some of the terms used, such as ‘stable’ in the nurses’ report. As far as we can understand from the hospital, ‘stability’ and ‘absence of challenging behaviour’ in hospital indicates that NHS continuing care funding would not be granted.
We attempted to provide input for the checklist tool, but the hospital would not accept our input, and now we have been told that they will complete the checklist tool for their own benefit without us being present. The hospital has not indicated that they will allow us to see a copy of the findings from their checklist. We have been told that we will be invited to attend a meeting at some future date with a continuing health care assessor who will complete the decision support tool, presumably using the hospital’s checklist as input, without any input from the family.
Without knowing what their ‘local protocol’ is, we are at a loss to know whether the correct process is being followed. We have been told that this London borough follows the national framework, but that they don’t have a ‘panel’, the implication being that a ‘local protocol’ would be unnecessary. However, in our discussions with the hospital, it does appear that the absence of a local protocol means that policies are being determined ‘on the fly’. There is not much confidence that local policies are understood, defined, or enacted correctly and consistently.
Does anyone have similar experiences with London Boroughs or the LHNA forms? Is there any advice on how we should proceed from here?
Hello, I’m seeking advice about how to go about presenting the argument to assessors to have mum’s care fees paid through the NHS.
The story is that mum has increasing dementia, beginning about 7-8 years ago & deteriorating to the point that she was very unsafe in her own home, didn’t eat regularly or properly, had no idea about how or when to take her bronchial and other medications and was vulnerable to all types of people . My sister & I have both lived overseas for many years. We have Power of Attorney and 3 or so years ago we made the reluctant decision that mum should go into care, as bringing her to another country was fraught with problems & potentially not in her best interests, as the few things she could remember would be gone.
We spent several weeks in the UK getting assessments done, sourcing aged care facilities & trying to understand the processes involved. Of course, one of the first questions we were asked was about mum’s assets, and yes, she did own her home. It appeared relatively easy to get her into care after that, but the first placement lasted only a week because she ‘ran’ away (she was 82!) & so she was placed in secure care & has been there since.
It was about a year later that we heard about the NHS funding deadline as a result of a newspaper article that was sent to us by another relative. We had never even heard of NHS funding before in any interactions we had had with anyone.
So I completed all the necessary paper work by the due date & about a year later mum was finally assessed. The result was that she was considered not to be eligible for funding. I responded to the assessment with considerable evidence that seemed to me to demonstrate that she should have been eligible & requested a review of the original assessment.
The ‘review’ took several more months and when I have finally received it mum has been assessed as not eligible once again. The second assessment was not a review of the first one, which I thought I had requested, but a new assessment of her eligibility now.
I am doubly frustrated by this latest assessment because, although her dementia, double incontinence, inability to take medication or cater for her nutritional needs is more or less acknowledged, the review states that these needs are being met…of course…that is why she is in care! The fact that she had a broken wrist when she went in there originally & it took months to discover it, and several other issues were completely overlooked.
So, I am coming to the UK in May to have a meeting with the assessor, but I feel that I am in some sort of loop and I don’t know how to get out of it. The assessor & her supervisor have agreed to meet me but, although I also suggested that a meeting with an Independent Review Panel might be required, this request seems to have been ignored. Trying to deal with this when you are on the spot must be hard enough, but trying to do it from Australia feels very difficult.
How do I demonstrate to them that dementia is a health issue (I have already provided a lot of research evidence!) and the fact that mum may be able to physically eat without assistance (now her wrist has healed) does not mean that she does not need care because she simply wouldn’t eat if the care wasn’t there, and similarly with all her other ailments, including her inability to appropriately take medication. I do not believe that these are social care needs, but are health care needs resulting directly from her dementia, which is itself a health problem. I understood that the assessment was a review of her condition, not how well her needs were being met. Am I right?
Any advice on how to tackle this meeting in May would be very gratefully received.
Many thanks
Great site. A lot of useful information here. I’m sending it to
some friends – and of course, thanks for your effort!
My 90 year old mother is currently in hospital, but marked as “medically optimised”. My brother and I have POA. She has been disabled due to arthritis for many years. Now she is also suffering a host of medical conditions, some of which are caused by medications used to treat other conditions. (Eg steroids for Polymylegia Rheumatica causing oedema and “leaky legs”. ) She was hospitalised because of delirium caused by dangerously low sodium and recurrent UTIs. The delirium has been compounded by cerebral small vessel disease.
We are going through the NHS Continuing Healthcare (CHC) Checklist process, though it is a continuous battle and we are constantly being told she doesn’t stand a chance of getting it. We want mum to come home – at least to try to make a go of it – but we need support. Social Services do nothing but ask about money and tell us what she CAN’T have. Not working with us to find what she needs.
How do I get a proper after hospital care plan put together, based on her actual needs; not on her financial situation?
In arguing this yesterday with the hospital’s social worker, she quoted from mum’s hospital file. Not only was what she quoted incorrect, but how come she gets to see the file while my brother and I have to go through the lengthy Subject Access Request route? Not only do we have POA, but mum signed the CHC consent form such that her medical notes could be shared with us. This is yet another barrier by the financial gatekeepers. They know we can’t wait 40 days to bring mum home.
We have just had our father who has advanced dementia, is incapable of standing or lifting himself, is double incontinent and fitted with a catheter under go an assessment from the local CCG using the Decision Support Tool which was given to us at the meeting. The assessor arrived one and a half hours late. She proceeded to casual talk to us about our father and we answered as fully and truthfully as possible, this was a mistake by us as she twisted this information to show my father as capable and not needing any thing from the NHS and that the care being given by our family, which is full time care provided by his sons and financed by my fathers saving. We got the impression that the woman had already formulated the answers for the DST and was not interested in our views or requirements. She wanted documented proof when we told her about his weight loss but was quite happy to pass judgement on his condition after only observing him for 15 minutes.
I consider the whole system a joke and just a political tool for politicians to say that they are providing a service which they know will not, because of the wording of the DST, be possible to meet unless you are at deaths door.
Sorry for the rant but I find the whole system so frustrating.