My father Malcolm was diagnosed with frontotemporal dementia shortly after retiring, and within two years had been placed in care under section, with little expectation of him being discharged. His personal health budget allowed us, his family to purchase the care that enabled him to live safely at home. All the family were involved in decisions about his care, giving flexibility in the hours and support provided. Malcom did not return to care, becoming calmer, and requiring less medication. He was supported in the community for the last six years of his life. The saving to the health and care system was significant, but the benefits in terms of quality of life and wellbeing were priceless for all the family, including Malcolm.

MalcolmMalcolm had Right Frontal Lobe Dementia – a rare form of this disease which meant that he had complex and unpredictable behaviour. Because of this, existing care packages were quite limited as domiciliary agencies weren’t willing to work with my father as they felt his needs were too complex. Malcolm made it clear he wanted to live as independently as possible, not in an institution.

In 2009, we, were approached by the personalisation lead within the local authority about setting up a personal health budget. This was prior to the national pilot phase which meant there was a lot of exploratory learning. We already received peer support from Jo Fitzgerald (who had pioneered working through the process with the commissioners) and she suggested the option of a 3rd Party to hold and manage the money, because a Direct Payment option was not available at that time.

We believed having a personal health budget would give us as a family and Malcolm greater choice and control as to how support could be used. The only option previously available, a day centre between Monday and Thursday, 8am – 5pm, had proved too rigid.

As we were one of the first families in the country to receive a personal health budget, the process was challenging and took around six months, but we had a very open dialogue with the commissioners as to what the challenges were. These included alternative funding options such as using a third party organisation.

The peer support was invaluable at the time, as Jo was the first person to have successfully received a personal health budget and knew and understood potential risks and benefits. She could speak independently with no vested interest, which gave us confidence.

The Personalisation lead was also extremely helpful and remained on hand to be contacted for any questions.

We had a good relationship with commissioners in the primary care trust and although there were several challenges in the process, it was transparent throughout, which gave us the confidence and determination to see it out.

The personal health budget opened up far more flexibility in the hours that Malcolm received the support and allowed him to be accompanied by his carer to do the hobbies that he wanted such as go to football matches, to the cinema and for walks.

Malcolm’s freedom and independence gave him a new lease of life and, by empowering him to live in the community, he lived for six years, when the doctors had given him six months.’

It also gave us confidence to play a more active role in Malcolm’s support and the process helped us to build our own knowledge, skills and confidence in supporting my father, and understanding all of his needs.

Over the course of the next few years, Malcolm’s medication reduced by two-thirds and he only had one dementia-related hospital admission, after previously spending over six months in hospital under section 117.

An evaluation of Malcolm’s care showed that his personal health budget saved the NHS over £200,000 over the last three years of his life.

Colin Royle, Malcolm’s son and carer