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.
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.
Unite to fix care where you live
Alzheimer’s Society is campaigning for a fairer social care system, where people with dementia and their families don’t have to spend all they have with care. Unite against dementia.