Mark Chipperfield's parents, Jean and Ben

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.

Our helpline advisers are here for you.

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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21 comments

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I got continuing care for the last week of my wife's life. Good of them.

I got it for my dad on the morning he died.

We are just embarking on this road with my mother. She has not officially been diagnosed with Dementia but she definately has it and it has progressed dramatically since the death of my father almost 4 years ago.

a family member got taken in to hospital with aspiration pneumonia, got told she was not able to go home and had to have nursing care! Got told we would get funding. No funding was put in place after 4 meetings, still denied Chc. Total deteration then was told not ill enough for chc. Died 3 days later! Think the chc is a waste of time and only help people that never paid a day's tax or ni. Or a different colour

Mum was turned down for continuing healthcare despite the fact that she was unable to feed herself or take medication. She wouldn't drink without assistance either. Without self funding care she would have become extremely I'll or even died. Nothing will change as long as the budget controllers are making the decisions on who is eligible.

We are going through similar issues now with my mum. Unfortunately she doesn't have any of her own monies available. I have been waiting for a CHC assessment for a while. Adult Social Care want to place her in a nursing home before the assessment is complete and are continually asking me to top up the funding, which I am not able to do. The homes available are all in different towns were I would not be able to see her as regularly as I do. It's a very stressful time. Patients with dementia get a very poor deal!!

I had a similar problem but they took note when I told them that it was my husbands "Human right" to be near his family so that he could have visits from them.
Even though the nursing home that I wanted him to go in near our home was in a different catchment they agreed that they would pay it because it was his "Human right".

The criteria for assessing NHS continuing care is in my view deliberately complex and on most counts set to fail the individual.
So even if you are paralysed, being fed by gastric tube and dependent on others for all your care needs it is unlikely you will be eligible.
Care and health were split as two entities when the NHS washed its hands of caring for our elderly.
The two major keys that will open the box are a diagnosis of a terminal illness with an expected death within 6 months.
Or having an unpredictable, unstable medical condition which requires frequent qualified nursing interventions.

It is hard enough caring for someone with this devastating disease. Why do we always have to have a battle to get care we have all paid to have.

I am seeking CHC for my father who has Dementia and Alzheimer's, and is confined to a bed unable to care for himself.

The first 2 attempts both went no where because, firstly social services and latterly the district nurses, failed to follow their own process properly.

I have just managed to successfully get through the first questionaire again, so now ready for the next battle. I wonder whether it is worth employing one of the many private firms offering their services to help secure CHC?

Has anyone any recommendations?

Hi Stephen, we’re sorry to hear about your father. Please contact our Helpline team if you would like information, support or advice about dementia. They’re ready to talk to you on 0300 222 11 22 and you can find out more here: https://www.alzheimers.org.uk/info/20012/helpline

Has anyone tried to get their local councillor to assist and a news paper story.these sources are free and will challenge the chc's cruel unfair decision.get your story heard.social services, your g p and representatives from memory clinic,district nurses etc should all be supporting you with your application and attending meetings with you.

My husband has Alzheimer's and cannot speak or do anything for himself he's doubly incontinent . We've tries twice for continuing health care. Last time was last year when he was in hospital for about fifth time with pnumonia and was told by the social services although he fitted most of the criteria because he wasn't classed as violent he wouldn't get it. We are now going through it for the third time but we're not getting our hopes up

Hi Jean, we're so sorry to hear about the difficulties you and your husband have been having. It sounds like a very difficult time for you all. If you ever need any dementia information or advice, our National Helpline team are here to help on 0300 222 1122. They may be able to offer some guidance on continuing health care. Thanks for getting in touch, we wish you and your family all the best.

My mum, god bless her, was in receipt of full funding when first admitted to a nursing home. This was because of mums unstable mood swings and inconsistent sleep patterns, which apparently required an extra member of staff at night. However, since mum has now deteriorated further and is confined to bed, all funding has stopped. Today (9-3-18), we recieved a bill for an extra £3100 per month back dated to last November. So basically, nearly £16,000. As a family, we weren't involved or invited to any of the decision making processes and feel quite powerless.

You clearly have been let down by the system all family members have a right to attend all hearings,as your loved one may not be able to clearly express themselves, and have a right for an advocate or family member to represent them.

We have just been turned down for funding for my dad. The first hurdle has been the process, it has taken 6 months from the nursing assessment for the decision to be made. As a health professional myself who is involved in nursing and DST assessments for the first time I have had my eyes opened to the postcode lottery of assessment time and subjectivity of the assessment itself. I was convinced as a family member participating in the DST and dad gaining 1 severe (2 severe by social worker) and 5 high that dad would meet but oh no despite the social worker recommending and the family attaching a supporting letter we received the call to say no. I am astounded as a nurse that the nurse assessor says dad has no primary nursing need. To mention a few mixed dementia now a third added of lewey body, AF, Heart failure, Fluid on his lungs, compound fractures of spine. He suffers bad with anxiety and sun downing often up all night shouting and hallucinating. All this lends itself to unpredictable and complex health needs. We have chosen as a family to manage dad at home which requires 24 hour 1 to 1 care. Dad self funds and we will keep on working and managing his care to ensure he receives the care he deserves. We will appeal the decision. The laughable thing is that we are looking at a weeks respite for a short break and thought we had found a care home we all agreed we were happy for dad to be but then told by the social worker we can’t place him there as he requires nursing care..Really!!!!!!

Dear Joanne
We are in exactly the same situation with mum being as disabled and in need of high levels of care as your dad. The only difference is that mum got funding from Continuing Health Care. What swung it was our use of PRN medication. We tried not to give this Lorazepam prescribed as a PRN medication for what you describe as -
'He suffers bad with anxiety and sun downing often up all night shouting and hallucinating.'
because she would be hungover next morning which had a knock-on effect of her sleeping past breakfast and missing important food and fluid intake which, as you say, leads on to other health issues like UTI and dehydration and general weakness. Hence we would use it as a last resort after trying everything else.
It was this which increased mum's score which put her into the funded category. I was then able to use this funding to pay our team of Personal Assistants which, until this point mum had been paying for herself. Continuing Health Care is a battle ground and not set up to help families who are caring for their loved ones at home yet all of the geneal guidance says that this is the best place for people with dementia. I have turned into a Rottweiler when it comes to mum's care which doesn't sit well with me but it's the only way to get the best for her.
I wish you well on this distressing journey. Lynne

Mark sums up the position so well in his headed paragraph A Difficult Journey. My wife went into full time care and for the first 7 months was refused CHC.Catherine was discharged from hospital in February 2017 after a fall having been diagnosed with Alzheimer's in June 2014 and the decision was taken that I could no longer manage at home. After unsuccessfully appealing the decision...which took 4 months... the matter is proceeding to an Independent Review Panel. I informed the Darlington CCG on 24 July that they would need to send their papers to the North of England Regional Team in Leeds.I have sent the Leeds Team all of my papers but despite 2 reminders from those in Leeds the CCG have not replied!! The Society's Helpline team are now assisting me and it feels like a lifeline after all the setbacks endured to date...Bill.

My first attempt for funding my husband failed. When he died shortly after, I appealed, and was successful in retrospect. So all his money was refunded for the three months he was in care. Alzheimer's site had informed me that interest was due on the monies but only if you asked! This was true so I did so and was successful. I am so indebted to Alzheimer's for all the valuable information I read while caring for my husband. It was the only help I recieved. Keep up the good work (Talking point) .

This is so sad to read Mark but I’m so glad that you are fighting back against the system. We too had a similar situation with social care with our local council and we fought their decision and won. My advice to anyone is do not give up the fight to get what your loved one is entitled to. It’s not about cost it’s about care and they have a responsibility to look after you. We found most people in their job do not really have an in depth knowledge of the system and therefore mistakes are made by them all the time. It’s stressful but do not give up until you get satisfaction.

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