David and Martin’s Story

David Jones, aged 34, has cerebral palsy with severe developmental delay and epilepsy. He lives with his parents in Dorset and is a fulltime wheelchair user. He is totally dependent for all his needs. David’s father Martin explains how a personal health budget has been beneficial because it enabled the introduction of one-to-one care workers, physiotherapy, and a tutor to help David on a choices programme.

Despite his disabilities David loves music and classical music in particular. I’m a professional musician so David and I will sometimes stop doing whatever we are doing and listen to music, which he enjoys. As for David’s health, until late 2010 David only had a few problems. However he later had regular admissions to

hospital for complaints. He also lost weight which necessitated a dietician becoming involved.

Up until late 2011 David was eating orally without any problems. But unbeknown to us the dietician gave instructions to David’s speech and language therapist to increase his fluid intake. This instruction was in turn given to staff at the day centre where David attended three days per week. It was not until 2012 that we learnt about “over hydration”. We now realise that most of David’s recent medical problems were due to the increased fluid intake recommended by professionals!

We first heard about personal health budgets in 2009 through my voluntary work with a Learning Disability Partnership Board and Health Action Group. It seemed the ideal solution as David’s needs are predominately health related. In May 2011 David was granted a personal health budget of £865 per week.

“…we were able to employ one-to-one care workers to help us through this extremely difficult time.“

Initially we intended to employ one-to-one care workers only to accompany David while at the day centre. This was because staffing levels at the centre were low and, following an annual review, we felt the staff did not know David sufficiently well (even after 11 years!).

Unfortunately, at the end of 2011, David’s medical team decided he should discontinue oral feeding, and a feeding tube was inserted. This was an extremely traumatic period for us as parents because it meant an intimate bond had been severed between us and David.

Luckily, through the personal health budget, we were able to employ one-to-one care workers to help us through this extremely difficult time. The care workers assisted David at home and to cover shifts at the hospital in order to give us a break. David needs someone with him 24 hours a day, and hospital nursing staff are not able to cover this. It is always necessary to have someone at David’s side to convey his needs.

We were given details of a care agency, and the three carers provided have been well suited. Thankfully, the agency manager understands what kind of staff are most suitable for David.

Using an agency has been beneficial because we do not have the added responsibility of employment issues. Plus we have someone else to sort out any problems which may occur.

The personal health budget has also enabled David to have a private physiotherapist who sees him at home and the day centre. This was necessary as the NHS physiotherapist was not a regular visitor at the centre.

David’s care workers have also been trained to do his exercise programme. This means it is now done regularly which has helped keep David healthy.

The care workers are also trained to implement a choices programme – which helps people with disabilities such as David’s to broaden their abilities to decide what things, such as type of food, they prefer. They also accompany David to hydrotherapy sessions. Overall, I feel there have been a number of benefits since taking up a personal health budget. These are:

  • David has better overall health because his one-to-one care workers work under our supervision and therefore do what is in David’s best interests.
  • As parents, it has given us peace of mind to know that David has a buddy with him at the day centre who will communicate his needs.
  • David can access the health treatments he needs when he needs them, rather than having to rely on lengthy waiting lists.
  • We are able to choose how much or how little care David requires and when. Personal health budgets provide flexibility.
  • We have taken a one-to-one care worker on holiday with us. This has given us respite, free time and moral support.
  • We have been able to fund mobility equipment which David requires, so preventing us having to endure long waits for funding approval.
  • David feels confident and happy with his buddies who in turn do what is best for him. David has blossomed and remained healthy.