Thousands of elderly people are wrongly charged for end-of-life care
Sally-Ann Marciano
Accessing end-of-life care can be a battle for many families, and of course this usually comes at a time of great emotional turmoil and sadness.
Sally-Ann Marciano describes the ordeal she and her mother went through to get her father assessed for NHS funding and to get proper care in place when he was dying. She’s not alone in finding that the ‘system’ let her down – very badly – and her story will resonate with many.
What she and her family went through is appalling, and it’s inexcusable that proper end-of-life care is still so difficult to access. Sally-Ann is also not alone in experiencing what now often seems routine on the part of the health and social care authorities in telling someone their care needs are just ‘social’ care needs (means tested), when anyone with an ounce of sense and knowledge can see they are health needs that should be funded by the NHS.
As in Sally-Ann’s case, many families are also told they ‘won’t get funding’ before an assessment has even taken place, and many assessors do not even know the person being assessed, or have any meaningful understanding of their health needs. Families are also often excluded from assessments, even though they should be involved right at the heart of the process.
Sally-Ann comments:
“It is so wrong. Our parents have contributed so much to society, and they deserve a dignified end to their life. As I tell many people, you have no second chance with end-of-life care. It has to be right first time, every time.”
You can read Sally-Ann’s moving story here
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Hi, my dad has been sent From the hospital to a nursing/care home to revive palliative care after being ill with covid and having his leg amputated because he developed a blood clot will my dad have to pay for the nursing side of things.
Mum is officially at end of life since 24.10.2022. Registered Nurse at care home put through an express EOL NHS CHC application on 31.10.2022. Said she did not think Mum would live this long. I had no clue free EOL care existed. The Registered Nurse has been doing the job nearly 40 years! Also, said it cannot be backdated when I asked for it to start 24.10.2022, not 31.10.2022. Her assuming and not applying for EOL NHS CHC as soon as it started is wrong. So, who is liable for nearly £1k weekly care home fee when the manager assumed…? What can I do? Advice welcome please. Disgraceful
Hi, I understand your dilemmas, my mum was bedridden and had carers at home, she was 90 my dad developed vascular dementia, so at one swoop we had to sort them both out together. It was a nightmare, they said dad should be in a residential care environment, so I managed to get them both together with rooms next door to each other, it is difficult to get nursing homes who will take dementia patients. The social workers were as unhelpful when it came to asking who pays – all I got was, if they have a home you can sell it to pay for care, when I said mum could not do anything for herself and was on goldline, and end of life register, they said she still has to pay, Same with dad. Mum died in 2016 she was only in the home 6 months, Dad died 2019 feb last year after nearly 3 years in care. I have decided now to challenge them, they get you at the most vunerable time and all you want to do is scream, and no one takes any notice. All the doctors assesments and records I now have together with all nursing records and all assesments, It is now the time to challenge them for them to repay, the more people who take them to task the better. Results can then be discussed and publicised so that it wont happen to others. I understand everyones pain in this…..I could not have done this whilst mum and dad alive, but now I can. I have the proof in the records that they should not have paid. Will let you have the outcome and details so that it should help someone else. Carol
Hi Carol – do get in touch if you would like any help or support from one of our specialist CHC Advisors with your proposed course of action – 0161 979 0430 Kind regards
Can anyone help with some questions regarding Fast Track? Dad was given Fast Track after being judged end of life when his GP visited him at home following hospital discharge. We had been trying to get him assessed for Continuing Healthcare (CHC) for 18 months and a Decision Support Tool (DST) meeting had finally been arranged only a week or so before he deteriorated and was admitted to hospital. CHC was agreed on June 30th and it took a few days for some care to be put in place with family providing most of the care as we had for the previous 18 months. The commissioning co-ordinator told me on the phone that the agency commissioned would be able to employ our private carer and my sister, Dads main carer, to give continuity. The agency agreed and paperwork was completed and interviews held. However, the agency have still not engaged them or paid them and therefore despite CHC being agreed we are still paying for virtually all care other than 3 personal care visits each day and some overnights when Marie Curie nurses provide a sitting service. I asked the CCG what we should do regarding care costs in the interim period while we were waiting for the agency to pay our private carer etc and they told us to end receipts and dads bank statements proving he/we had paid for the care. We have done this but the CCG have still not replied. They have, however ,written to tell us they will be reviewing his CHC at the end of the month, only two months after it was agreed and even though Dad is not expected to live much longer and he is receiving only palliative care. The insensitivity of the letter, addressed to dad, a dying man, and read by my mum, frail, disabled and in poor health herself, is shocking. Para 13 Fast Track document states: “Where an individual receiving services through use of Fast Track Pathway Tool is expected to die in the very near future the CCGs should continue to take responsibility for the care package until the end of life.” Doctors and district nurses have told us on several occasions that they believe he may only have hours left and certainly no more than a few days. Surely in these circumstances putting us all through a full assessment is insensitive and pointless. I have also considered quoting para 13 from the Fast Track document which states: “It means that a CCG takes responsibility for commissioning and funding appropriate care. Once this has happened, a CCG and its partners can proceed, where appropriate, with reaching a decision on longer-term NHS Continuing Healthcare eligibility.” Since after six weeks the CCG is still not “funding” dad and we still cover the bulk of care costs can we decline a review until they have actually put the funding in place? I feel we should not be having to deal with any of this at this very difficult time. Does anyone have any experience of a similar situation?
Hi Meggie, Yes this is very familiar. We got a personal health budget but they could not get understand the idea of a live in carer which is a must at end of life. They would pay for a nursing home, no problem but dying at home which needs 24 hour care was not in their ‘care package’ mentality. We paid the care fees till mum died and now I’m battling for reimbursement.
My mum is 96 next month. She has been in care for 10 years and we have just (again) been refused Continuing Healthcare. At that review, I asked for their definition of terminal illness and at what stage, exactly, mum would qualify for help. She has vascular dementia, untreatable leg ulcers and lots of other damage linked to previous strokes. She has been unable to stand for ten years and her mental state is extremely variable. But she’s polite so it seems she doesn’t qualify for anything.
The nurse/consultant did not answer my question. She told me that many terminally ill people were not getting NHS help now. She seemed to think it was a good thing..
Are there any definitions that I could use to help our case? I thought the NHS had a positive obligation to help the dying. What has happened to this? Unfortunately (but not very surprisingly) mum is running out of money now and my ideas about making ends meet are rapidly running out too. And if she dies soon, which seems likely, is some sort of post mortem claim even possible? Candidly it might be better if she swore and threw things! Then she’d be unpredictable!
There are so many abuses of this system. My mother died a few weeks ago following a series of strokes. Before discharge last December we asked for her to be assessed for Continuing Healthcare (CHC) as she was clearly extremely ill following a brain stem CVA. Around this time we discovered that her care costs were covered by the local authority as she had been subject to a Section 3 a couple of years ago. It was clear at the start of our meeting that the CHC assessor and the Mental Health rep. had met beforehand and decided who was going to pick up the tab as it were. The local authority lost and we went through an assessment which was a joke. Her needs were described as only moderate in almost every category and there was no way to appeal against the descriptions. My mother was completely incapacitated. Doubly incontinent, unable to move unaided and unable to speak or swallow and barely able to communicate in any way. She was nevertheless discharged to a nursing home. The staff there were kind but the level of care did not seem enough for what she needed. Following a period of no visiting due to D&V I noted that my mother had deteriorated even further and raised this with staff as I felt she had had another stroke. No action was taken and she died in her sleep a few days later. The staff seemed surprised by this. The time from discharge to death was only 6 weeks. I don’t feel that she had sufficient care as she neared the end and I think that this was entirely due to financial reasons. I still find it hard to speak of this but I wonder how many others go through this experience. Death of a loved one is never easy but should it be made so difficult due to penny pinching by the NHS when the system spends so much on bureaucracy?
Can I ask what was your Mum’s condition was when discharged to the nursing home?
My Mum who is 89 had a brain hemorrhage xmas eve and is unconscious
She is unable to swallow and is receiving fluids via Iv
It has been mentioned to my brother that she will be discharged to a Nursing Home but what care can they provide?
Can they give Iv fluids and feeding through a nasal tube and anti seizure Iv as my mum is receiving now in hospital
Hello Anne – so sorry to hear about your Mum – how awful. If she has a rapidly deteriorating condition then they should consider fast tracking her but if not then she must be considered for full NHS CHC funding in any event. The hospital is under a duty not to discharge her until she is ready and they are satisfied that the ongoing care can be safely delivered in a Nursing Home setting. Kind regards
My mum was awarded nursing care funding rather than Continuing Healthcare (CHC) last August, could you let me know whose responsibility it is to review the funding. My mum deteriorated quite rapidly from Jan and passed away in March but no one seemed to prompt a review of funding and I could not get any response from adult social care to query a review. Thanks
I wrote with an update a few weeks ago about our plight with my mums application for Continuing Healthcare (CHC). My mum with late stage Alzheimer’s was originally assessed in April 2016. She was refused CHC funding in September. We appealed in early December but have not received an acknowledgement ( although we tracked our letter to ensure receipt). The Local Authority (LA) conducted an informal meeting on 21/12:16 and stated that my mums nutrition has declined. They requested that the nursing home do a more detailed report over a four week period and then they would decide whether a further Decision Support Tool (DST) was required.
Unfortunately my Mums health deteriorated further over that period and she passed away on 24/1/17. The home didn’t apply for the Fast Track process as they were completing a detailed daily report of my mums health and care.
We have spoken with our MP and in support she has stated that she will write to the CCG if the appeal is not successful.
We have no intention to give up on fighting for an overturning of the original decision in April to deny our mum CHC.
Is there anything else we should be doing whilst we wait for the CCG to communicate with regards to the appeal?
Elaine – I’m so sad to hear that you mum has passed away. You may find some useful extra tips here: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/
My mother recently scored high in 3 domains (cognition,mobility and medication) and moderate in 3 domains (nutrition, continence and skin) in a recent assessment for NHS Continuing Care but was found to be ineligible , her needs deemed to be social rather than health. I understand that a clear recommendation of eligibility would be expected where there are a number of domains with high and or moderate needs and I am wondering if there is any indication anywhere of what that number might be.
(I am currently appealing ,on behalf of my mother as I believe the ratings have not been applied correctly for behaviour, mood, nutrition, breathing, and ASC )
Mary – take a look at page 15 of the Decision Support Tool for the criteria – see the 4th main link down on this gov.uk page: https://www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care
Ok, I’m back again! This time I need to check what is supposed to happen when someone is discharged from hospital. Our mother is in late stage vascular dementia with no communication, very little mobility and other illnesses. She was taken to our new emergency hospital last week because had pneumonia caused by aspiration. Patients should stay in the emergency hospital for 72 hours and are then transferred to the hospital designated for our area. When family visited on Saturday evening, we were told that mam would be transferred as soon as a bed became available, however at around six o clock on Sunday evening she arrived back at her nursing home in an ambulance. She still had the needle attachment for the drip in her hand. I would have expected some kind of care plan/advice from the SALT team and thought she should have had a CHC assessment carried out. It felt as though they had just thrown her out of hospital. Any advice please?
Yes, she should have been properly (re)considered for CHC before being discharged from hospital. Scroll to the ‘hospital discharge’ section of this article: http://caretobedifferent.co.uk/the-care-act-and-nhs-continuing-healthcare/
My view on this is that if the law states that people who are ill have to pay for their care, then they have to pay for it. However the law does not state this. How are the people carrying out these assessments getting away with this? This and only one other site on the Internet are the only ones clarifying the laws – even the sites relating to illnesses most of the people whose level of illness are described on this site skirt around the legal rights. It seems to me that there is some kind of fear or curtailing of freedom of speech surrounding Continuing Health Care. What is going on! My mother has recently been refused chc (in spite of MP involvement). We have raised issues regarding her care – sitting on pressure sore without protection seven days a week/stuck between bed and safety rails due to failure of nursing home staff checks/ nursing home confused about SALT recommendations ignored. The list goes on, but who actually listens to your concerns – what about those poor souls who don’t have anyone to check that they are ok. No one seems to give a monkeys.
You’re right – for people with no family to fight for them, the situation is very bleak indeed.
The discharge to assess process that was used in Aug 2014 to get my FiL out of hospital meant that he never got a checklist let alone a CHC assessment.
That was the case when he had been sent home from from a ward within 3 hours of his arrival because he had refused treatment….. He had a brain injury dementia. A UTI and MRSA infection in a failed leg amputation. Add the morphine and I ask you; would anyone be in a fit state to make decisions?
His thigh bone protruded like an overcooked leg of lamb and his GP stated that the hospital had sent him home to die of sepsis because he had refused care.
That being the case….. Where the hell was his fast track assessment?
They sent him home to die at his own expense within an expensive nursing home.
Still they argue that they did nothing wrong.
Just awful, Chris.
My mum is elderly and is in the end stages of cancer. She had received fastrack funding for the past 7 weeks (since being discharged from hospital). She is adamant she wants to stay in her own home. Had a call from Continuing Care this pm to say current carer leaving on Mon and agency do not think they have a replacement. They will try to get another carer but as it’s Xmas they think it unlikely. What are we supposed to do? Why are they allowed to do this to us? What will happen to mum? How can we find a 24hr carer a week before Christmas if they cant? At my wits end….
I’ve heard many accounts of people being left without care over holiday periods. It’s massively stressful for families, not to mention the impact it has on the person needing care and the potential for their health to deteriorate or for them to suffer accident and injury.
our relative will not eat drink or take meds, he is now on end of life register he was sectioned for 2 weeks back at care home 2 weeks ,the care home admits it cannot meets his needs. sends him to hospital the hospital send him back to care home ,they have taken his savings pension home and dignity ,the N H S clearly do not want a bed taken up .A lifetime of serving his country ,only for this disgrace called social care,my sympathies to all the families enduring the care system
My Mother-in-law lives with us in Surrey. She will be 89 this month & has had vascular dementia for over 25 years. She has lived with us for 8 years but last year she was declared to be at end of life and granted NHS continuing care. we had had carers coming in to assist my wife for over a year at that point of time and wished to continue with them. This was not possible and receive assistance from the NHS as the carers they wanted us to use were not acceptable to us as we had had previous experience of them and we are not allowed to chose carers who are not approved by them. They are not approved because our carer company have not requested it as the NHS do not pay enough. So although the NHS company would always have 2 carers to deal with Mum and we only use 1 carer at a time to help my wife, this does not compute and so we have had to turn it down because we are not allowed to top up the cost either. the proposed new scheme of providing an individual health budget is the same, you are not allowed to top up to enable one to use your own choice of carer, in Surrey this will not happen until April 2014 at the very earliest as they were not part of the pilot scheme.
Thanks for your comment Sheila. There seems to be little national publicity in the mainstream press about goes on for families who are fighting for end-of-life care and battling for funding. It comes to the fore from time to time, but people really only take notice when, as you say, it happens to their own family.
Yes, you’re right. And the language assessors use in the assessment notes seems designed to play down needs and obscure the real issues. Here’s a previous article on a similar theme: http://bit.ly/12uDa0N
I have just recently had an award after three assessments, The guidelines have not been followed, The english wording has been given different meaning, The panel that decide have not met my wife, No funding would be given until I had to let my wife go into a nursing home, No recompense has yet arrived, We have both contributed for over 50 years, Those who have never worked contributed nothing and live off the state get everything free, The whole system is degrading, unfare, and not fit for purpose and designed not to provide financial help until you have spent your life savings
I couldn’t agree with you more Gary. The division between so-called ‘social’ care needs and health needs is one that the NHS regularly seems to exploit to suit its own ends and protect its own budgets. Elderly people have supported the NHS for the longest and, when then need it to support them, they find themselves faced with a convoluted system of assessments that determine whether they are ‘eligible’ for NHS care.
We have just completed the assessment process and it was decided that my Mother didn’t qualify for NHS funding. It’s difficult to keep an open mind when dealing with the welfare of a parent, that said it really beggars belief when you discover what the NHS describe as “Social needs”.
Every single resident that we see in my Mothers care home are completely and utterly incapable of taking care of themselves each requiring 24 hour care and supervision but not one of these residents qualify for NHS funding.
Those supervising the assessment admit privately that the assessment is woefully inadequate and specifically designed to minimise funding. Statements are made to family members at the early stage of an assessment like “You are wasting your time” “In 8 years I have never seen a single applicant qualify” etc All designed to dissuade you from even attempting to proceed.
These elderly people still recollect the old NHS slogan “Care from Cradle to Grave” and wonder what went so badly wrong and why the NHS once such a caring organisation now wears a mercenary mask and is bereft of compassion for a generation who served their country so well.
I would like to comment on the above very sad but typical problem. The only way things can be changed in my opinion is constant and relentlless publicity.
Many people may be unaware of the stituation their own families could, under present circumstances, have the same unthinkable problems.
It will most likely take enormous pressure to force a change especially when the NHS seems to have no interest currently in the terminably ill.
I would be interested in knowing what has been tried already and if others agree with my view.
Kind regards
Sheila Liddell