/ Health

NHS funding is a postcode lottery – have you been affected?

Patients around the UK are facing a postcode lottery when it comes to continuing care on the NHS, our health investigators uncovered today. Have you been affected by the NHS postcode lottery like Gill and Carol?

Gill Jarvis was shocked to find herself footing a £96k per year care home bill at short notice. Her mum Jean – who has severe dementia – had lived in her care home for nine years and the NHS had been paying her care bills but all that suddenly stopped with little explanation when Jean’s local health board (Clinical Commissioning Group) reviewed her needs.

In another part of the country, Carol Rumens found herself in a similar situation when her husband Geoffrey’s continuing healthcare funding was stopped after eight years. Geoffrey has long-standing mental health problems and is physically very disabled and unable to care for himself.

Both Gill and Carol are clear that the person they love’s health has deteriorated, making the withdrawal of this funding even more hard to understand, and they’re not alone in feeling that they are victims of a continuing healthcare postcode lottery.

Care costs

The NHS funds people who have the highest healthcare needs. Those assessed and deemed eligible have their full healthcare costs funded by the NHS – whether they live in their own home or in a care home, and whatever their financial situation. At a possible £1,000 plus a week, it’s a life-changing sum of money.

But despite a national framework for assessments, vulnerable people with complex conditions can be up to 25 times more likely to get their care costs covered depending on where they live, according to NHS continuing healthcare funding data.

South Reading, the Clinical Commissioning Group (CCG) area with the lowest level of people funded, paid care costs for 8.78 patients per 50K of the population, while Salford funded 220.38 people per 50K. Although different areas have different populations, these differences can’t be easily explained by demographic differences.

The inconsistencies affect people living in the same region too. In Stockport (31.76 per 50K), patients are almost seven times less likely to get the funding than those 10 miles away in Salford.

Emotional impact

And it’s not just the funding that hits hard. Carol – herself an ex-nurse and health visitor – describes the emotional impact of fighting her husband’s case for funding. She said:

“This has nearly broken me. I go to meetings but it’s a foregone conclusion. This is not justice. CHC is meant to be based on need but his need has got worse. They ask my opinion but it’s not of interest to them even though I’m the one who knows him, and what triggers his mental health, best.”

A new national framework has now been published with implementation due on 1 October 2018. It will not change eligibility criteria, but aims to provide greater clarity, including for staff. But will it make the changes that are needed?

Comments

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Martin says:
20 April 2018

They don’t care about people with mental health problems in the Teeside area..Even if your doctor has diagnosed you with anxiety and depression the people who assess you in Thornaby just say that you have nothing wrong with you and you are just waisting tax payers money!

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Something must change, we have an ageing population and the fact that people are living longer with severe health problems has been known about for years. Successive governments have chosen to ignore this problem but it will not go away so we need to find a better way of funding care for the. Elderly.

mary says:
11 May 2018

Totally agree

My 83 yr old father is the full time 24/7 carer for my Mother with severe dementia. They get virtually no help and what they do get is paid for in full by my father. My mothers saving fell below the minimum threshold a full year ago but the wrangling between Ealing Social services and Ealing finance who put a care package in place to allow her to remain at home have remained unresolved over two years after discovering abnormalities with the charging of care. i.e. being over charged.

It has been a constant battle to get any basic things. GPs are simply not pro active and won’t get involved. Social Services have a here today gone tomorrow staffing issue. No-one ever takes responsibility and there is never a name, email, telephone contact to any correspondence. Some simply cannot grasp the degree of pressure it adds to the day to day looking after of Mum.

Every single professional has indicated that Mum fully meets the criteria of NHS continuing care but it is almost impossible to get anyone to help or steer one through the mire of utter bureaucracy to even get as far as a serious application. GPs won’t help and that I find really infuriating. Yet in adjoining Hillingdon borough a friend in almost identical circumstances, had much help instigated by the GP and Hillingdon social services. It worked like clockwork with the minimum of obstacles. Here in Ealing it is like a 30 ft thick wall of concrete exists between sufferers and carers and the help they need. It is simply clogged with ignorance and red tape and no joined up thinking.
When you do get help the clinical staff are very often superb but hard pressed and using massively outdated means especially for incontinence issues. The knowledge and skills are there but the physical means are still in the 1960s.

I find it really surprising yet rather poor that it is Labour Councils like Hounslow and Ealing which are far worse than Conservative ones like Hillingdon that cannot manage their obligations. Yet demographically almost identical boroughs.
They seem to be unable to get a grip on getting quality and consistency and blame everyone else for the lack of funds. But no-one actually seems to know how funding is covered per density of population. Yet they can find funds for vanity projects like Cycle routes costing far more than need be yet cannot find money to even paint a dilapidated care home.

I think Social Care needs to be removed from local authorities and the NHS reformed into the National Health and Social Care service and all care homes, trusts and services transferred along with funding .
And a high national standard created and adhered to. If it means raising National Insurance then is should be so or introducing a national Social care contribution ring fenced for care in later life.

Big changes need to happen but for the present, a huge kick up the rear is needed and fast.

Hi Mark,
From my direct experience as a specialist palliative care nurse who needs to constantly fiight to get my referrals to NHS Continuing Healthcare accepted, the trio Brent, Harrow & Hillingdon CCGs is one of the worst at granting funding for NHS Continuing Healthcare, both in London and nationally.
Marco

I was diagnosed with borderline personality disorder and told as I was living in Nottingham a lot of the therapies available elsewhere were not available to me. The only option open was group therapy which was not suitable for my particular bpd. This left me with no treatment and as I could not afford to go private there wasn’t anything I could do. Needless to say my disorder worsened and I hate to say cost the NHS in my failed suicide attempts and self harming. I’ve never felt so let down. Just given a diagnosis and then shown the door.

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I agree with Duncan all round. His offer is worth taking IMHO.

my biggest problem with being a carer for my wife, who is bedridden is that I am 79 in May and because I get a state pension I loose my carers allowance . Who in heavens name thought that fly twist up. My wife is 83 and i have been her full time carer for at least 5 yrs, we do now get other carers who come and tend to her toiletries But with shopping cooking washing etc, in and among it is now getting to me . any visitors now have to sign a decleration promising not to tell my wife what the other rooms look like

The numbers of people needing these homes will go on increasing every year.
We must insist that Government, Conservative or Labour make this a priority making sure we have the means of providing what the elderly people of our country require. Remember, these are the generation who fought for our country, or were the many thousands who had to tolerate German bombing during the war-years. They need all the help they can get and we must see to it that it happens.

itried for chc but was turned down even though wifes dementia gets worse day by day,and i have to cope alone.

https://www.parliament.uk/business/committees/committees-a-z/commons-select/public-accounts-committee/news-parliament-2017/investigation-nhs-healthcare-funding-report-published-17-19/

People need to visit this website – tells you pretty much what a total fiasco our NHS is becoming in respect of Continuing Health Care.

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The provision of care is presently at the same level as health care was before the NHS. In order to be taken care of WELL, at home or in a care home, you need LOTS of money. Otherwise, often in the carer’s own old age, we are left trying to assist our loved ones as they become more dependent, when we are less and less able ourselves. The cost of GOOD outside care is WAY beyond the funds of any ordinary family, and is often not available even if you had the money.

I think it is obviously engineered so that it is impossible to get chc unless you are practically dead. My 93yr old mum has 2 carers four times a day, is incontinent, confused and cannot stand or walk, and needs help with all bodily needs. She is not eligible for chc and has to pay towards her (inadequate care). My brother who lives nearby supports mum at home by doing her cleaning, shopping, cooking, laundry, gardening and manages financial affairs, without which support it wouldn’t be possible for her to be at home. He has a long standing mental health condition and his community mental health support has been cut. What a caring society we are! My heart goes out to all the carers out there who are struggling.

Hi Jill,

I was sorry to read about your mum's situation. Do not stop at first CHC refusal.

You might still have grounds to appeal even if the CCG performs well. In my experience as a specialist pallilative care nurse who has to constantly fight to have my referrals to NHS Continuing Healthcare accepted, I have found that the table in the article pretty much predicts the likelihood of first refusal. And therefore, the likelyhood of an appeal being appropriate. Of course every case is unique, and needs some analysis. But it is not rocket science. Yes, appealing a refusal of funding can be time consuming, but it only needs bursts of activty occasionally, and it is more often a waiting game, with interspersed nudging the appropriate entities. Sometime people needs a little help, but things can be done largely independently.

Best wishes,
Marco

At the risk of an off-topic flag…. we need to be more altruistic on funding as a nation (and, given the local devolution, that means local authorities need to be more altruistic on their allocation of funds).

By way of example… If the local authority spent extra to put salt/grit on all pavements in their area – it may rob NHS of £X. It may save perhaps 5 falls by elderly folk, three of whom may be hospitalised – and two of whom would keep coming back with complications. Cost to treat these three… a lot more than £X.

The Government say the NHS is floundering because of the aging population so why are they allowing more elderly into our country. My area is full of them and it costs even more for interpreter. I have to purchase my thyroid medication from abroad like many other thyroid patients.
A large amount of money too is being spent on sex change operations simply because they want to be the opposite sex. The Government also started prescribing this expensive drug Pret for partners of Aids patients at the expense of cut backs for other patients care. Do I want to end up in a home or have a carer my answer is NO too much cruelty and exposure to infections. However the day is coming when we can have an idyllic robotic carer.

Transgender people have to fund the operations themselves as they aren’t available on the NHS so they aren’t taking resources away from NHS patients. I have watched programmes about this and its obvious what distress and angst it causes people when they feel they are born in the wrong body and must feel it strongly otherwise they wouldn’t put themselves through complicated surgery to change their sex and its a long process for them. I used to work for the NHS in NW London when I lived there between the early 80s and late 90s and saw the problems them as the NHS was constantly being reorganised and didn’t really solve anything. As I saw it, it was too many chiefs and not enough Indians and there were too many so called managers who didn’t really have sufficient experience. The old matron was a great idea as it was someone who worked their way up so knew all the levels of the job and what people actually had to do to make the system work. In the local hospital I worked in at the time they still had their own staff carrying out jobs like cleaning, preparing food in the kitchens, which was very good, and the admin support for these services was very good. People then a lot of the time had done their job for years and had invested a lot of time and effort into them and were like cogs in the machine that kept things running. Its all changed now with contracting out and the emphasis being on doing the job for the cheapest rate but not necessarily the best quality. I gave up medical secretarial/admin work because the job got more overloaded with work, I was expected to work for too many people and cover a lot of bases and the morale wasn’t good and that was in 1994! Its deteriorated now and I have to wait TWO weeks for a routine appointment and dr’s appointments are filtered so that most of the time you get to see the acute nursing team instead of a doctor which isn’t always satisfactory. I think postcode lotteries are most unfair and it should be a national standard where people get the same treatment wherever they live and it should be professional practice to provide that service. After all, people pay for it but they aren’t getting it, so what’s happening to all that money?!

i DONT THINK THAT THE FOUNDER OF THE NHS INTENDED
1 there should be different funding by area for any service provided to resident British citizens;
2 cosmetic medical support,free,other than that prescribed by a doctor;
3 NHS medicare to be free to non british resident citizens(at the start of the NHS the EU was not in being)
4 persons needing care in a care home to have to pay for that provision….somewhere along the line an entrepreneur decided that by offering private care alternatives money could be made.Then successsive Governments(all parties)policies changed” alternatives” to “primary” status;
5 non British residents/visitors to receive free NHS care/services;
6 Government to lose control about what is provided and to whom
I do think the NHS needs more money.The question is “from where?”One needs an easily collectable tax which can be identified and ring fenced. In the 1930s in New Zealand all postage stamps had an extra health tax supplement(stated on the stamp).This country needs to find a similar “base”.As email has drastically reduced the use of postal services a health tax on postage stamps will not work.
Maybe a tax on vehicle fuel or on water or just on income tax (I note that County Councils Council Tax bills have an identified Police precept).Maybe a tax on broadband (enjoying ever increasing usage)?
If we can find new planets surely we can crack this problem!?

At last a common sense approach, brilliant! Being of a “certain age” myself (and my husband also), we are constantly bombarded with the old adage “the old are more prevalent and taking more of the resources” from the NHS – what they never say is that WE HAVE PAID for this over many working years. It is NOT our fault we are still alive – although it sounds like it to me! All your comments are absolutely correct, we need to get a grip of reality and stop penalising the ones who a) have no cash resources, b) have no or little savings or c) are “just above” the minimum parameters for help! A little more tax on the small things would make a difference and would hardly be noticed. Well done for a snapshot of reality.

My husband was in care home for aprox 5 years. The last 18 months of his life we managed to get continuing care funded. 6 months before he died this was withdrawn as were told he wasn’t bad enough for the funding. This was a man who had vascular dementia, prostate cancer and amputee of leg due to Knee replacement MRSA. He couldn’t talk, feed himself, scratch his nose, turn in bed etc. It’s time someone looked into some of these cases. It’s disgusting

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Yes this mirrors our experience as both our parents died in nursing homes after years of us trying to keep them in their own home – both had dementia, Mum’s was vascular and Dad’s Alzheimers/complex – and in both cases they were only granted CHC funding a day or two before they died. Shockingly cynical treatment from local NHS Healthcare Foundation Trust which we are still fighting to obtain compensation for. Problem is the CCGs are closing down NHS facilities to avoid them being used for elderly care – especially dementia which they do not regard as a primary healthcare issue! You are left with no option other than looking for a private nursing home and many of those are so basic or not fit for purpose but you have no other choice. We ended up in A&E several times after both sustained fractures after falls but after a few days – a week at most – they were sent back to us often in pain or even more immobile. Sadly we have a government who are in dogged pursuit of bad ideas which like the Windrush episode shows how determined they are to deny responsibility. Very depressing.

The “health board is Hampshire

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Sandra, that is horrible. It sounds like you have been victim of the usual tactic of deeming someone as not eligible for funding because needs are well managed, as it is often the case when a care home learns in time how to deal with their residents' issues. You husband was obviously not cured of his multiple illnesses. How preposterous to withdraw funding on any basis. Obviously just a demeaning exercise of taking your husband off their annual budget. For them he was just an ID number in an Excel spreadsheet.

If the period with no funding before your husband's death is not too long ago in the past, from what you are describing you might have a case for a retrospective review, and for a refund for those 6 months. Study the assessments documents for the reviews where he qualified for funding, amd compare to the last review where they said he did not. Spot the lies, the misrepresentation of the facts, the playing down of needs, the excuses about needs being well managed, or needs being only basic and not requiring specialist intervention. All these rationales are against the National Framework for NHS Continuing Healthcare: https://www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care (the first document linked on the page is the Framework, a must read). If you objectively find some of these issues present in your husband's latest assessment, get your appeal for a retrospective review.

Marco

Care of the vulnerable, elderly and those with mental health problems needs taken away from the NHS and the CHC altogether.
In my experience they do not spend the budget wisely at all. The whole system of ‘continuing care’ is a total shambles. Sooooo much money wasted were it is not needed – leaving little for where it is desperately needed.
Kick the whole system into touch along with the lousy attitude, employ sensible caring folk instead – then many more that need help could benefit from the same budget.
It’s not MORE money the NHS needs – it is BETTER MANAGEMENT.

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Ed Dougall says:
21 April 2018

I agree, apart from “It’s not MORE money the NHS needs”. It needs more money as well.

I looked after my wife for 8 years as she became increasingly less able to speak, move, walk or even stand , as a consequence of early onset vascular dementia. In the final years of this disease she was completely paralysed and immobile, unable to move her limbs or speak but could still move her eyes. An application to the local CQC for continual NHS funding was unsuccessful on the basis that she was not completely immobile even though under the district nurses judgement she was described as immobile. The whole of the CQC process was designed to be a drawn out process with an assessment based on completely ambiguous questions and illogical answers obviously compiled to minimise a successful outcome for the patient in order to save money. She died shortly before the outcome of the assessment was received.

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The CQC told me they ‘do not deal with individual complaints”. They will only take complaints from care organisations. Its a joke.

Tricia says:
21 April 2018

I have been my brother’s carer since my mother died 21 years ago. He is 72 and has a diagnosis of schizophrenia(since he was 18 years old),Parkinson’s disease and lacks mental capacity to manage his affairs or function in any meaningful way. He lives in ‘supported housing’ which is insufficient for his needs so all his benefits go towards keeping him and his flat clean, laundry, hot meals delivered etc. A mammoth task which I coordinate. I visit him at least weekly (round trip of over 100 miles) and am engaged in a fight to increase his care package which has recently been cut from 7 hours to 5 per week. I feel he needs to be in a care home but the LA say he doesn’t meet their criteria. Because of his complex medical and mental health needs (delusions, violent behaviour, risky behaviour, self-neglect, incontinence etc) I have suggested that he should have NHS funding ….I was told by his social worker that he didn’t stand a chance. I have decided to relinquish my POA and not deal with his financial affairs any more so a crisis will develop. This is the only way he may get proper care. I may be delusional too.

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I was told in two different parts of the country that all assets are taken down to £23,250.No mention made of an assessment for NHS continuing care funding.Telephoning every week for eight months in an attempt to get assessment done and when it eventually was done they said it could not be back dated.The follow up assessment was supposed to be done three months later and again had to keep trying.Eight months later my mum passed on and I had to go through the appeal process which is still ongoing and is based on a bureaucratic `Decision Making Tool`and case law such as Coughlan seems to be ignored.

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Social services told me “its a health issue – get NHS continuing Care” and yet my son has been refused Continuing Care four times. Now he cannot even get access to a GP. Its cruel and unnecessary Stephen. I’m so sorry for your experience, but it might help to know you are not alone.

My son is severely disabled. He’s 28. Since April 2017 he has been left with a severe trauma injury to his shoulder following a fall in his own home due to care cuts, which has been repeatedly described as the same injuries as someone would receive in a serious car crash; and yet he gets NO medication; no support from any agency in the NHS to treat his injuries. He cannot even register with a GP as the GP locally says they haven’t got enough doctors to enable him to register with them, so they refuse. This is the only practice we can register with as we are so rural. I’ve written to EIGHT MPs – including my own, Ive appealed to NHS England SEVEN times, the CCG refuses to even talk to me, and Social Services, instead of supporting me in my caring role with this bed bound young man have accused me falsely of “denying him medical care” and now have just walked away. We’re ENGLISH. I’m a carer, but before my son’s condition deteriorated, I ran my own business. We’re made to feel like we are the scum of the earth now. My son is in so much pain. He’s had FOUR ambulance call outs this year alone (the last one on Tuesday as he fell trying to use his commode) because the shoulder injury affects his breathing and no-one will help. I pay hundreds of pounds each month out of our benefit incomes for over the counter medicines and physio supplies just to keep going. My son is assessed as nil income as he’s on benefits so he cannot contribute to his own care and now he’s having to live in a studio shed in my garden because he cannot even live in his own home. A shed!! Through this past winter in all the snow we had. It’s inhuman. It really is.

We can’t get legal help, we can’t get any help from anyone. We live in the middle of nowhere in Norfolk and we feel like we’re just waiting to die. Its truly and utterly appalling.

THIS is a campaign that Which? must run with to the bitter end. Please. For the sake of my son and myself and the millions of people now who are being denied any access to medical care in the UK. Its not ‘cuts’, its a death sentence.

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