The founder of Care To Be Different, explains how her stubborn streak helped her secure fully-funded NHS care for her parents – and why she set up Care To Be Different as a result…
“I was never a natural when it came to standing up to authority – until 2005 when both of my parents went into full-time care and I found myself face to face with the NHS.
“My parents both had the same illnesses (advanced Parkinson’s disease and dementia for starters), both needed care, both went into a care home on the same day, both were illegally charged for care (which cost them their home and everything they’d worked for) – and they both subsequently died within a few weeks of each other four and a half years later.
“To say that I was shell-shocked after that would be an understatement. It was a harrowing experience – yet one I know is also shared by tens of thousands of other people across the country.
“At the start I knew nothing about the care funding system or the Continuing Care funding criteria and I, like many other people, simply assumed that because my parents had a house and some savings they’d have to pay for care. After all, that’s what the health and social care authorities tell us, isn’t it?
“I soon realised, however, that this is in fact not the case. I started reading about Pamela Coughlan and the now well-known Coughlan case at the Court of Appeal, and the Grogan case, and began to realise my parents’ care fees were in fact illegal and that they should be receiving NHS Continuing Care funding to cover all their care fees.
“I started exploring what actual assessments had been done for my parents when they went into care, and I was shocked at what I found. The process was a mess – and highly questionable: Assessments had either not been done properly or not at all; in my mother’s case the NHS asked my father (who had dementia) to sign paperwork that was then used to deny her funding; I had been kept out of the loop (despite holding a power of attorney); I’d been given incorrect information; and key health needs had been completely disregarded. When I arranged for reassessments to be done I experienced verbal intimidation by one assessor and blatant misstatements of fact by another.
“Back then very few organisations, including the big charities, seemed to have even heard of Continuing Care, let alone be in a position to help me fight my parents’ corner. But, despite people in the care system being unwilling or unable to help me, I did a ton of research and started delving into the dark recesses of Continuing Care maladministration. I had no idea how to prepare for Continuing Care assessments, but I was going to find out. The local authority told me their files would now be closed and the care home management was appalling in its indifference. I felt utterly alone. I realised it was going to take all the energy I could muster to fight this.
“I’m Taurus, and we are (apparently) relentlessly persistent and determined, but also annoyingly stubborn and inflexible. I now count all those traits as blessings. My battle for Continuing Care for both of my parents took three and a half years and left me exhausted – not least because of the 250 mile round trip each time I visited them or attended any meetings, but also because I was a self-employed writer at the time and keeping a business afloat.
“And, of course, at the centre of it all were two people I loved who were dying. My father had developed kidney cancer and my mother had several strokes.
“My parents ran out of money, and the care home came after me personally for funds. It is, of course, not the family’s responsibility to pay care fees in this situation; instead, it’s up to the local authority. I realised how easy it is to be taken in by what the various care authorities tell you. But I was having none of it. I was incensed at what the State had put us though – and at what it was still trying to do.
“My mother’s case went all the way to a Strategic Health Authority tribunal. I learned so much about the care system during that time, how to counter what the NHS was saying, how to back up my case from a legal point of view, how to challenge the misinformation and appalling lack of knowledge on the part of the assessors, how to put the NHS on the back foot in an assessment and how to write a powerful appeal.
“I won my mother’s case, and I repeated similar arguments in my father’s case, using the same process, the same research and the same strategies to challenge everything. Eventually I won his case too. The NHS was forced to repay care fees and provide Continuing Care funding on an ongoing basis.
“I believe Continuing Care is one of the biggest scandals in elderly care in the UK. After my parents died, I realised that my experience and knowledge would be valuable to other families, and that’s why I set up Care To Be Different. I also knew that I could do things a lot more quickly for clients – and that I could make the process easier for them.
“Plus, I understood the tears, pain and anguish that families go through and how important it is to have someone on your side who is not simply helping from theoretical knowledge, but who has ‘been there and done it’ and who understands the ins and outs of the system. I also wanted to put a lot of my knowledge together in a format that families could access easily; the e-guide, ‘How To Get The NHS To Pay For Care’, has now proved valuable in helping many clients successfully obtain Continuing Care funding.
“My message to anyone who has an elderly relative in care and paying care fees is simple: challenge everything you’re told and don’t take no for an answer.
The NHS was set up to provide healthcare and nursing care free of charge at the point of use. That hasn’t changed – it’s enacted in law – and just because someone is old and in a care home doesn’t mean the authorities can change the rules.”