Dementia Support Line
Real stories
Applying for NHS Continuing Healthcare – Caution, requires extreme strength of character
Mark's story highlights how it is people with dementia who fall between the cracks between health and care, and that NHS Continuing Healthcare - an option for so few people with dementia, for such a limited time – is another example of our broken system.
Mark Chipperfield, Alzheimer’s Society supporter, tells the story of his mum Jean and his family’s nine year battle with the support system that they thought would help them.
My mother Jean, a former nursing sister, was diagnosed with Alzheimer’s in 2008. Six months later her world disintegrated with the death of her husband of 40 years, Ben. My family’s world also started on a long and difficult path to support her to stay in her own home.
Mum’s dementia rapidly developed after Dad passed away. I had promised my father I would try to help mum stay in her own home, but I could see she needed help with, what to me was a severe health issue. So I recruited part-time carers, but then I discovered NHS Continuing Healthcare (NHSCHC).
I initially asked for my mother to be assessed. The then Primary Care Trust (PCT) assessed my mother, but I was informed that should she be awarded funding, I would lose control of arranging the care myself and the NHS would take over any plans for my mother. So she was unlikely to be able to stay in her own home.
A difficult journey
That set the tone for what has been a long, arduous, unprofessionally managed, overly bureaucratic, inhumane journey and terrible relationship with the PCT and subsequent Clinical Commissioning Group (CCG).
It has been a ‘fight’. Not what we should expect from an NHS department, which seemed only concerned about not awarding funding, and had little interest in the health and well-being of someone suffering from a degenerative, awful, unpredictable illness, that is experienced differently by all its victims, but massively impacts all of them.
My mother was turned down three times during the assessments for NHS Continuing Healthcare.
By my third attempt in 2011, I also had an on-going complaint running against the handling of the process. I presented my case, there was a bit of ‘feedback’ from the experts, and later I was sent a report showing that the local NHSCHC team had acted properly. I was amazed. It seemed like a conspiracy, a closed shop, the NHS marking the NHS and finding the NHS not guilty. I was devastated, crestfallen, but also incensed, and determined to overturn this somehow.
At the end of 2012, we were advised we were eligible for funding. The CCG provided funding, but very little other support at all. Fortunately the health agencies, GPs and nurses were wonderful, supporting what we were trying to do.
Funding removed
In 2016, the CCG ran another eligibility test and despite mum’s obvious extensive health deterioration, funding was withdrawn. We had a magnificent team and set up that helped provide my mother with some kind of positive life despite everything – and the CCG had removed themselves from any responsibility. It was shocking. I couldn’t really believe it.
My mother’s health deteriorated further and she was hospitalised with pneumonia. The doctor said she was not strong enough to recover. I made the decision to transfer her home where she passed away on New Year’s Day, surrounded by love and some of her care team.
I will see this case through but I have been appalled by the way an NHS department have failed both my mother and the taxpayer. My mother died unfunded and uncared for by the CCG, with us fearing about the future when her own funds ran out.
Mum had been in the palliative cohort with her GP, since 2015. Her conditions were clearly impacting her far more than in 2012 when funding was awarded and to my mind it was totally unacceptable to remove the security of funding later on. Not everyone will be eligible, but once provided, the process of removal should arguably be even more thorough. This was not the case for our family.
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Sue Robinson
saysI’ve been fighting for CHC funding for my husband since March 2019... he was refused funding within 1 week of the assessment carried out by his home authority... we appealed immediately, but it took until early July to get the appeal panel to meet. Turned out decision was made on the records from the first 3 weeks within his new placement. They agreed to look at records from the MH hospital where he had his assessment and his medical health records... in mid October his appeal was refused again and if the family wish to continue the appeal we have to apply to the ‘providers’ to get the information the judgement was based on. This will take a further 6-8 weeks! In the meantime, we have made an application to the borough he now lives in (no provision in home authority) again, no decision as yet. Husband’s money allgone and no-one seems to care... others on S3 get after care for life... even if we eventually get funding, can be withdrawn at any time. Bad enough having to witness the man I married deteriorate, but the stress of trying to get him cared for by the state having impact on my health... he’s worked all his working life, yet can’t be looked after in his time of need. DISGUSTING!!!
gillian johnson
saysWell done you for perseverance and keeping mum at home. We should all live in scotland where care is paid for
Rosemary Henman
saysWe are 21 months into appealing against the decision to withdraw mums health funding. We had the appeal 10 weeks ago, were told we would hear within 4 weeks! I personally went to the offices for continuing health care and somehow mums assessment/result had got “lost”!! You will hear by Thursday if not ring! I ring and it has been tracked down and I should have a letter by Monday, I will not hold my breath! The whole system is not fit for purpose and I will be contacting our health trust to formally complain!
Aj leon
saysIt is hard work y Auntie is the same going through the cracks in the N HS
John Froberger
saysMark I had the same problem as you with my mother and now the same with my father and everything possible is done not to diagnose, but when they do the family is ripped apart by them taking over and not knowing the person making decisions that do more harm than good, advancing death by a number of years, I think to save money. As they say died of natural causes rather than expressed lack of care to cause the person to deteriorate quicker. Dementia cases are all dealt as text book not as individual. Saying what was right for one is right for all. The NHS is not as caring as people are allowed to think it is only when they are needed you find this out, then it is too late. The battle is lost before it starts. Any committee that looks at complaints always comes down on the NHS who do no wrong. It is a closed shop and those battling through alone always come off worse. Remember the good times don't dwell on the last your parents understand you did your best for them against insurmountable odds against Bureaucrats who don't give a damn unless they are affected by it.
May
saysI was clueless about CHC and relied on the nursing home to request assessments. Dad did receive it but only part funding. Then a few months later it was withdrawn. He got it fully funded in Feb 2018 but that meant he had deteriorated a lot. He passed away June 2018. I was never clear on how bad he needed to be to receive the CHC funding but once they gave it to him fully, it just made me realise how bad he has become. In a way, when he didn’t get it, it felt like it was a good thing as he wasn’t too bad.
24/7 carer wife.
saysI was unaware of the possibility of continual health care funding .
Alice Gasc
saysHello.
Reading the above posts is heartbreaking.
My Dad was diagnosed with vascular dementia in 2016.
Cared for in his own home (I gave up my job to be alongside my Mother) until January 2018 when my Mother put Dad in the cheapest home possible (£500pw). Claimed it was dementia-friendly... staff fully trained... etc...
Dad lasted five days then I received a call at 2.15am on a Sunday morning from the home as the weekend staff couldn’t cope with a human who didn’t sleep all night.
His social worker and dementia nurse worked miracles and by 9.00am on the Monday morning Dad was in the care of Tees, Esk and Wear Valleys NHS Trust.
Now hospitalised, in a dementia unit, Dad was himself again. Every member of staff was brilliant. Awesome, fantastic and amazing doesn’t come close. And this was the NHS.
I believe that this level of care is courtesy of a postcode lottery again. It’s not good enough. Everyone ought to receive the love and care my Dad received.
Alleged care homes ought to all be of the ward standard I observed. To charge what they do is criminal. The way that funding is awarded is abhorrent.
This is a national embarrassment.
Hilary Temple
saysSomeone was probably receiving a bonus payment for delaying or reducing the number of cases adjudged successful - as with the DWP? I see no prospect with this government of anything other than a "culling" syndrome. We are a couple aged 76 next birthday and something like this cannot be too far away for us.
Karen Crump
saysWe got mum assessed 3 times over a period of time, for CHC because the first 2 assessments were not conducted properly. Mum was diagnosed with Alzheimer’s in 2010, I looked after her until she had to leave her bungalow in 2014 to move into a residential home. Mum was at risk of falls and Uti when she moved in, now she can’t do anything for herself except make facial expressions and swallow, she doesn’t now qualify because she no longer moves enough to fall. Mum has had to self fund all the way. We are now selling the bungalow my father had built for their marital home, to continue paying. It is where myself and my siblings were brought up, just so sad that on top of the suffering of the disease, victims have to be robbed of their life savings, because the system is so wrong.
Mandy
saysBoth of my parents developed dementia at the same time. I cared for them myself. I had to get extra help and eventually a live-in carer and then 2. They received no support at all. I applied for CHC and eventually 2 nurses came to assess them. The nurse believed they were both entitled to CHC. Their health deteriorated rapidly and I needed to have them cared for in a care home. I found a wonderful home that allowed them to share a room. I spoke to the CHC nurse who said the application was now void and I needed to reapply. This was wrong information! I started the application again from the care home. Six months later they were again assessed. My mother’s medication was changed and she was considered not in need. My father was fast tracked. He passed away the next morning and was awarded 10 days CHC.
I didn’t give up. I decided to go for retrospective for my father’s last seven months and my mother’s last seven months before a doctor assessed her and changed her medications. I jumped through hoops. I chased every piece of paper I could find relating to their care. I found diaries I’d kept and I had to duplicate everything for two separate cases. 15 months later, after endless phone calls, it was agreed they should both receive CHC retrospectively. I then needed all proofs of payment. I finally received the monies for the seven months and I cried (my husband thought I hadn’t been awarded it). My mother passed away the next month. I think she should have received CHC for her last six months but I couldn’t face it again.
My advice is Don’t Give Up!
Lynne
saysI applied for CHC for my mother (who had Alzheimer’s) in 2011 when she was discharged from hospital and needed end of life care following a traumatic 6 weeks in hospital. We self funded 24 hour home care while we waited for the CHC decision. 5 weeks later she died peacefully at home with her housebound husband by her side, but we still had no decision re CHC. When I chased it I was told bluntly that we hadn’t been awarded it. When I asked to appeal I was told by the district nurse that I wasn’t listening to her, we hadn’t been awarded it. I had to very assertively point out to her that if a decision had been made we did have the right to appeal it and insisted on a written decision with reasons. They then admitted they hadn’t even submitted our application! We were eventually paid the 5 weeks care in full. My impression from my initial contact to make the application was that they weren’t geared up to funding home care, the usual thing would have been to go into a hospice or a nursing home and we were being awkward by wanting something different.
Pauline Blake
saysI gave up trying to get any for my Dad. I found the whole process too upsetting to keep on. He was failed by the NHS. It wasn’t even really about the money, it was more a case of entitlement and principal.
Andrea
saysI got continuing healthcare the day after my mum died.
Catherine Cheyne
saysWe got a sort of CHC funding, something called section 117 funding after my mum was sectioned and put into a mental health unit as her Alzheimers was deteriorating so rapidly. But there just wasn't the support in the community to help her, and unfortunately the social workers didn't feel mum needed 24/7 care, despite not being able to communicate or complete the simplist task such as make a cup of tea, mainly because she was ‘too young’ to be in a home. Sadly dementia doesnt care about your age, and the truth is the condition isnt going to get better, so why carers / relatives should have to Jump through hoops in order to get care, is beyond me.