![Mark Chipperfield's parents, Jean and Ben](/sites/default/files/styles/image_2by1/public/media/images/image/2018-10/Jean-and-Ben_Mark-Chipperfield-parents-w1600x918.jpg?itok=xmw4vfJt)
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
saysAlmost a carbon copy of what we went through with my mother. We had no help at all and paid for all of my mothers' care. Selling her house. But for a lady who was totally bedridden and couldn't feed herself, it was so depressing. It upsets me so much, I try not to think about it. My mother passed away in 2018.
Jude
saysUnfortunately my mum went into a home 3 years ago. I suggested CHC due to her behaviour, not eating, seizures etc I fought hard and was at the assessment process and she got it. However it is reviewed annually a social worker who met my mum for 5 minutes judged she should not have it as she seemed fine (she said hello and smiled) we were not invited or aware she was having this assessment. So I decided to appeal on the terms of not being invited or present for the assessment. The social worker who I'd never met was rude and uncompassionate and said my mum presented healthy and well!!!!! I was fuming!!! My mother doesn't recognise me or my family and requires in all care needs. I asked for another assessor which happened within days who said the CHC should not of been turned down as my mums health has deteriorated. So again we have it, but it wasn't without a fight. Carers have to be strong and stand there ground in these situations, which is sad as you are watching a loved one disappear in front of you.
Dave Fabian
saysGood luck with your continuing battle against a proven corrupt system
Emma Terranova Davis
saysI am currently running “campaign for my brain” on social media for this exact reason! I went through hell and back , to get CHC for my mum. Even though she was such a clear complex case. They act unlawfully al the time and twist the national framework. I am so sorry that your mum had this suffering, but I am glad she was able to pass with you by her side. I have emailed BBC panorama several times with no response to cover the scandal that is CHC... perhaps Alzheimer’s UK would have some better contacts ?
Carol Hyde
saysWe worked with 4 agencies and not one of them told us about this grant .. instead social services acted like vultures when it came to payment for my mums care fees. Someone my sister came into contact with through her work advised of this grant and my mum was awarded funding 2 months before she died - my sister and I have been fighting for 18 months to have this backdated to cover the fees paid - the NHS haven’t even had the vommon decency to reply to to our claim, it is now in the hands of the ombudsman. It is utterly disgraceful the way people are treated .
Maria Griffin
saysThis situation is because this and previous Tory governments has refused to adequately fund adult social care . They have also many times promised a bill on how adult social care (inc dementia care) would be funded and have yet to publish such a bill
If you are struggling with this then you know where the blame lies..lack of proper funding .CCGs and Local Authorities cannot provide care if they dont have the funds.Our society has lost its way when the most vulnerable are not supported to live dignified lives
Phil Ridings
saysHow discriminatory can this be, I live in Lancashire and my wife had Alzheimer’s which eventually became a section order . The whole system worked for me even finding a care home capable of treating her severe case ,albeit a fair way away , I cannot praise the help I was offered I did have issues re the funding but got my facts right before making a complaint And was eventually phoned by the head of the ccc and even given her number in case I had other problems . Yes they did try to invoice me thousands but again I had myfcts to hand and received an apology. Well done Lancashire
Sue Jones
saysMy husband is in a care home has been for 12 months. Cannot walk anymore, has to be fed, will nit drink so carers are aware they have to give him a drink. He has a cathater, a colostomy bag. He does not talk, has vascular dementia, had bowel cancer, liver cancer, head cancer four strokes. Is type 1 diabetic and still not able to get chc. Im told he is not ill enough how ill should you be? The care home fees are draining me im 68years of age , i manage but all dreams have gone. He is terminally ill but told they have to know when he will die to be eligible!
Sue jones
saysJust after i commented my husband become very ill and passed away on the 11th october. I am now trying to appeal for chc funding for the last month of his life. His pension has stopped i will get half eventually but how im going to pay £1,100 plus another £600 i have no idea. The whole system sucks, we dont look after the living but we dont even look after the dying.
Lynda Goodman
saysMy husband has Alzheimer’s. Now has bowel cancer which has spread. Been given a Timeline of 3/6 months. But can’t get a Assessment done on him in hospital for CHC funding been told he doesn’t meet the criteria! He isn’t showing any signs of pain. But I keep saying his brain might not be registering pain. The day after he had a Colostomy he was up walking around on no pain relief!
Eileen
saysMy mum has vascular dementia we have just been told she's had this condition 3 years she has had 2 hip replacements a chest infection and diabetes .After 6 weeks home care she no longer needs it. On the basis she can make a sandwich herself .It's terrible how this is so pushed away by the system
Jeannette
saysRe Headline: "Mark's story highlights how it is people with dementia who fall between the cracks..." Is a most inaccurate comment. When people with dementia fail to get the chc funding they are legally entitled to it is because both they and their families are mostly too stressed to fight this illegally conducted process. It is all to save money (and keep their own overpaid jobs) that the decision makers target such low growing fruit. They are nothing less than despicable and I hope they suffer the same ill health as the poor folk they are denying this funding.
MICHELLE MAHER
saysMy mother started wondering and had to go into a care home. She was violent towards staff and other residents. They started sedating her. She had a UTI and admitted to hospital this week. Care home refuse to have her back and now having to look for care homes which can take her with difficult behaviour. House and all savings will go on her care if we can find a home. What advice would you give on funding and finding home that is not like a prison?
Hi Michelle
We're really sorry to hear this - it sounds like a very stressful time.
We have a section of our site dedicated to urinary tract infections and dementia, which you may find informative: https://www.alzheimers.org.uk/get-support/daily-living/urinary-tract-in…
As for finding a care home, please take a look at our advice here: https://www.alzheimers.org.uk/get-support/help-dementia-care/finding-ca…
Similarly, our section called Paying for care and support in England should be helpful: https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care
Please make sure to ring our National Dementia Helpline to speak with an advisor for further information and advice: 0300 222 11 22
We hope this helps, Michelle.
-
Alzheimer's Society blog team
Sara L Vernon
saysMy Dad was diagnosed with vascular dementia ten years ago , my Mum cared for him at home with just family help . Five years later he fell in a care home for respite and broke his hip , he never came home again . Our council at the time offered three care homes funded , one was forty miles away the other two ten miles away , two buses for my Mum to visit . One was closed down shortly after and the other had residents sat in chairs in straight lines and stank of urine and worse. My sister said she would not have left her pony in their care! So we chose a care home close to my Mum accessible by bus when no lift available. , £2000 + a month , paid for my by parents , who had worked all their lives , bought a house , cared for their elderly parents at home in their nineties and babysat the grand children too. Fortunately we were assigned an amazing social worker who appealed on my Dads behalf that the thres homes offered by the council were woefully inadequate and fees were halved. Each year my Dad was assessed for CHC but refused , he was due an assessment in March of this year which was cancelled but they didnt have the deceny to inform us . By the time they rang to rearrange, too late my Dad had passed away . In the late stages of dementia , turns out vascular and Alzheimer's, not violent , bedridden doubly incontinent can do nothing , no episodes of lost consciousness until pass away. The criteria does not cover dementia , it's a joke , if my Dad had known how he was living for the last two years he would have wanted a trip to Switzerland. However on his death certificate, which I recently re read , too upset to look at earlier , one cause of death carcinoma if the bladder !!!!! We were told just polyps, still being sent appointments in care home , if he had cancer why this not ascertained by the assessors , I have written to the CHC three weeks ago by Special delivery . Guess what no reply !!!!
Lea craggs
saysIs there moves by government to give free care to patients in care home suffering with this progressive disease Alzheimer’s I am horrified our savings and home will be GONE
Shirley Garbett
saysWe have just started the journey my husband has Lewy Bodies for about 6years has been very aggressive physical & verbally he has just gone into a nursing home can't do anything with assistance except eat which he eats very well all his coordination has gone his legs are very week can't see him walking much longer he has just come out of hospital they can't find out why his heart rate is so low between 35 & 45 may give him a pacemaker which I don't really won't,they it not to prolong this but give him quality seeing as most of this quality has gone makes me smile as most of him as gone ,so we have started the process but when we had filled the form for continuing health care the social worker said can't see you getting it ,I don't agree with the way they are assessed I've looked after my husband up to now and know what he can do for him self but the nursing home can assess him in a week dementia can be different from hour to hour from all the other letters I can see we don't have a chance ,I didn't won't to put him in a home like most people but it just becomes impossible breaks your heart and most times not self inflicted good luck to all xx
Cheryl
saysHi. Your husband should be entitled to CHC. Familiarise yourself with case law namely Pamela coughlan and don't take no for an answer. It's always advisable to get professional support ie independent social worker or solicitor... good luck. Cheryl
Daddysgirl
saysToday we have been told my dad needs to go into a care home due to late stages of vascular dementia, we were also told his house would have to be sold , his money he has each month i.e. Pensions etc they would also be having .,then I was told he will be allowed 23.19p to live on each week,not only have I lost my dad , who no longer knows me but we are going to lose the house I grew up in ,social services have decided my dads a safeguarding issue , and he can no longer live on his own, so the house my dad has worked hard for has to go ,I asked him to sign the house over 10 years ago I said because if you don't the government will end up with it ,his words were I'll burn it down first they ain't having my house I've worked hard for,it's absolutely heartbreaking ,it doesn't pay you to own anything really , !!! Then I was asked why do you want ???? Care home it's expensive ,my response I've given the best care I could give my dad for 8 years he deserves the best , he's treated like a king,if your having his house I want the best for him. ....the system is wrong !!!!
Dockyd
saysSo sorry to hear your story Daddysgirl, breaks my heart. My mother had a stroke 8 weeks ago and it looks like this has led to Vascular dementia. We are still waiting for a written report from the hospital before we agree for her to go to a home!
Before the stroke Mum was totally independent so a massive thing for us to come to terms with. Mum still recognised me and says they won’t sell my house will they?, breaks my heart.
Sad
saysHi Dockyd
I have been fighting for Continuing Healthcare for my mum since 2004 and she sadly passed away in 2018.