By Colin Royle
In April this year, my dad Malcolm sadly passed away. You might be expecting to read an incredibly sad story about how he suffered for the final years of his life – and he did. But this isn’t a story about suffering; this is a story about triumph. It is a story of how we succeeded in looking after my dad in the final years of his life. And it is a story about how my dad maintained choice, control and dignity throughout his illness.
He first began suffering with dementia in 2005. All of his life he had been an outgoing, hard-working and thoughtful individual. Dementia took a lot out of him but it didn’t take away all of what he loved to do. And it certainly didn’t take away the love that surrounded him.
It was leading up to his retirement in 2005 that dad first started displaying what, on reflection, were the first symptoms of right frontal lobe dementia. He had always been a very confident individual, doing various public speaking gigs and socialising at every opportunity. He’d always taken life in his stride. But in November 2005, he started having panic attacks.
This was unusual, but nothing much was thought of it at first. My dad was about to undergo a massive transformation in his life – it was only natural that he should feel slightly uneasy about it. But things continued to change.
Standing at six feet tall, 13 stone in weight and at only 60 years of age, dad didn’t represent what one may consider to be your typically old and frail dementia patient. But in the January of 2006, his weight suddenly dropped to just 11 stone in a matter of weeks.
His weight gradually returned, but other symptoms became more and more prominent. He became time orientated, more insular, and his confidence continued to ebb away. By the beginning of 2007, we were concerned enough as a family that we began seeing GPs and other health professionals in an attempt to understand what was taking place.
It was difficult for my dad to get a diagnosis. The professionals involved in his life only ever got a soundbite as to who he was. It was us as a family who knew him best and despite his ability to pass various cognitive tests, we knew something quite sinister was taking place.
By February 2008, my dad’s illness had advanced so much that he was placed under section 3 of the Mental Health Act. He stayed in hospital for six months, during which time his behaviours and needs became much more complex. It was during this period that we finally received a diagnosis of dementia.
I stated my intentions of wishing to care for dad at home. Unfortunately, the only options available from the NHS at the time to support him living at home were to attend a day centre. Even the local care agencies didn’t cater to such complex behaviours.
The day centre didn’t work for my dad. He began emulating the behaviours of other residents and his needs quickly increased. To cope with the increasing behaviours, his medication increased. But during all of his time spent at home he was relatively relaxed, alert and amenable. Something needed to change.
Thankfully in 2009, we were approached by our social worker about the prospect of having a personal health budget (PHB). It was explained that the idea behind a PHB was to allow more choice and control over the care we received. The budget was to be set at the cost equivalent to if my dad had gone into a care home, as anticipated some months earlier.
My dad was no longer capable of actively making decisions, so I took on the responsibility of advocating on his behalf. Due to living outside of one of the pilot sites for PHB’s, we weren’t able to receive the money as a direct payment so employed a third party organisation – Crossroads Ribble Valley – to hold the money on our behalf.
We wanted to recruit up to five members of staff to support my dad within his own home, which is where he wanted to spend his time. We agreed with Crossroads that any decisions around who to employ, rates of pay and hours worked would be made by the family. Crossroads would provide advice around employment law, managing the money and any support requested with regard to staff recruitment or disciplinary matters.
‘Choice and control to the end’
The personal health budget provided huge flexibility for my dad. No longer would he have to receive care between the hours of 8am and 5pm, Monday to Thursday. He could now choose to lie in during the week, to go to football in the evening, go to the cinema during the day – all things that any of us have the right to choose.
My dad managed to spend the rest of his life living at home, despite the complexity of his needs. His package of care didn’t increase in five years, such was its success. And his medication reduced substantially. But most importantly, my dad got to live the life that he deserved until the end. He wasn’t seen as someone who suffered with dementia, he was recognised as somebody who liked to watch football. He wasn’t seen as someone who had complex needs, he was seen as a family man. He wasn’t seen as someone who had no life, he was seen as someone who deserved to life his life to the full.
Both in my dad’s life, and in his death, he retained choice and control until the end. This couldn’t have been done without his personal health budget.
Colin Royle was the full-time carer for his dad Malcolm. He is also co-founder of peoplehub, a community interest company providing peer support for people interested in personal health budgets.