Another family wins NHS Continuing Healthcare funding
Jane is from Buckinghamshire and her father needs full-time care. Below, she talks about how Care To Be Different helped her win fully-funded NHS Continuing Care.
(Names have been changed to maintain confidentiality.)
“I am so delighted with your help and advice in our quest for Continuing Healthcare that I cannot thank you enough!
Your key advice at the start was that:
- we should expect very few NHS staff to even be aware of the existence of Continuing Healthcare
- we should expect to be turned down at first
- we should expect assessments to have errors, and despite this we should expect that the core problem is in the system rather than any individual staff
Each of these expectations was fulfilled.
My Mum had already started the process of looking for a care home for my Dad when I first learnt about Continuing Healthcare. He has dementia, as well as several other health issues.
Despite the fact he had been having carers come in to help him up in the mornings for over two years, and despite the fact he had been in the psychiatric unit of the local hospital for several weeks after his third suicide attempt, at no time had any local authority or NHS staff mentioned Continuing Healthcare.
The psychiatric unit had, though, suggested my Dad should go into a care home rather than go home… and to a specialist EMI (Elderly Mentally Infirm) home with nursing care. They felt my Mum would simply not be able to cope at home anymore because of his mood swings, and also his lack of mobility (he had broken his hip whilst in the unit and was no longer walking without support).
We were delightfully surprised when my Mum’s Independent Financial Advisor suggested that her first course of action should be to investigate this form of funding [NHS Continuing Healthcare] – but if we hadn’t had the insights from Care To Be Different into the need to push for/check the accuracy of the assessments, we would have fallen at the very first hurdle!
I first tried to speak to someone in the Continuing Healthcare department, and not knowing the whereabouts, rang the local hospital. The switchboard operator told me she had worked there for many years but had never heard of it.
An initial assessment [using the ‘Checklist’] was only carried out by NHS staff at the psychiatric unit when requested by us. When it was done, my Dad had not qualified to go through to the full assessment [using the ‘Decision Support Tool’].
When I checked through the forms – and I only asked to see them because of Care To Be Different’s advice – I realised that the NHS had not followed the guidelines about scoring my Dad’s needs, and that he should probably have scored differently.
I asked for the opportunity to go through the assessment form with the staff, and was offered the chance to meet with the team at the unit, together with someone from the Continuing Healthcare department. They said they would call me to set up the appointment.
Two and a half weeks later that call had still not come.
But at that point, my Dad went through a weekend of severe agitation and the NHS staff then said they felt they had assessed him too soon the last time. They would assess him again now using the Checklist and they were sure he would qualify to go through for a full assessment.
I asked to see the full assessment before it went to the Continuing Healthcare panel for a decision and I made sure that the relevant medics were ready to provide input – my Dad’s GP on the history of his case, his neurologist on the extent of his brain deterioration, and his “peg” consultant who can advise on what care his peg requires, even though he was not being fed through it at that point.
However, the NHS sat on the assessment notes for such a long time without making a decision – a point I made to the local review panel – that it was consequently thrown out because it was too old.
Using the knowledge I’d gained from Care To Be Different’s help and advice, I put together further arguments in favour of funding and I sent the NHS further comments on the way my Dad had been scored.
I argued for higher scores in specific areas of his health needs, as it was clear he had higher needs in those areas.
The result?
I’m delighted to say that we have now been awarded NHS Continuing Care funding.
For me, talking through the circumstances and processes with Care To Be Different was critical.
There is a lot of advice and detail in the practical guides on the Care To Be Different website. At the same time, I also wanted to talk through my Dad’s condition first with Care To Be Different – to get a better feel for whether he had any hope of qualifying. I didn’t want to waste any time or energy embarking on the process if there was little hope of a successful outcome.
Equally I needed to hear first hand the message about having to fight hard at most stages of the process, and this helped me gain the confidence to do so.”
Thanks again for all your input in the Continuing Care fight for my Dad. I am 100% certain that we would not even have pursued this if it were not for your input and advice.”
Jane P, Buckinghamshire
