Marion and Charles’ story

Charles, 70, from Dover, Kent, is severely ill with a movement disorder. His wife, Marion, 66, is his main carer. A personal health budget enables an agency carer to look after Charles while Marion takes respite for a few hours every week, which benefits them both.

Charlie has been diagnosed with Progressive Supranuclear Palsy, a degenerative disease which affects eye movement, balance, mobility, speech and swallowing. It is caused by the progressive death of nerve endings in the brain.

Progressive Supranuclear Palsy robs him of the ability to communicate effectively with the world around him. Its symptoms are similar to that of Parkinson’s Disease.

Ever since Charlie came out of hospital after being very poorly 15 months ago, he has been bed-bound. I am his main carer, but we are helped by NHS Continuing Healthcare which funds five care visits per day for Charlie. This means I get help with washing Charlie, moving him from the bed to a chair at lunchtime and back again two hours later, turning him in the evening, and then settling him for the night. To make sure he is turned frequently when in bed is particularly important, to prevent him getting pressure sores, due to the vulnerability of his skin. I attend to all other aspects of his daily care including feeding.

The care Charlie receives is excellent – I cannot fault it. But the downside was that I rarely got out of the house. In fact, for the first nine months after Charlie came out of hospital, I hardly ever left our home. My family helped whenever they could, but they have their own families to care for.

“The care Charlie receives is excellent – I cannot fault it. But the downside was that I rarely got out of the house.”

The best results from long-term health care

Dr Greg Rogers, a GP in Cliftonville, Kent says: “Personal health budgets will form a useful new way of giving patients more ownership and control over their ongoing healthcare.

It is encouraging that the early feedback from the pilot sites suggest that the outcomes for someone using personal health budgets are improved too.

I think we should welcome the opportunity to work closer in partnership with patients and their health care providers to get the best results for their long-term health care.”

To be honest, not leaving the house did not concern me too much at first. I’m an organised and resourceful person and I did all our shopping online and the pharmacy delivered Charlie’s medication. Plus, Charlie is my husband, I love him and I want to care for him.

But as the months passed it did become restricting, and very tiring. I also missed contact with the outside world.

It was then that Continuing Healthcare staff suggested a personal health budget to me. They put me in touch with health broker Rebecca, whose job it is to support people to decide the best way personal health budget funds can be used to meet their needs.

An assessment was made of Charlie’s healthcare requirements. There was no way we would have accepted Charlie going into a nursing home, for me to gain some respite. So instead we chose to receive part of our existing budget as a monthly direct payment for health care to pay for a carer to look after Charlie while I had four hours of respite every week.

I’ve now had this respite since November last year and I have been using the time to go out shopping again, and to visit friends if I have enough time.

Also, I’m a member of the Lions Club, and I’ve been able to go back to meetings and events again, which I attended regularly before Charlie became ill. It has made a huge difference. I return to the house refreshed to continue looking after Charlie. The break perks me up, and I have something else to talk to Charlie about.

“Respite care has made a huge difference. I return refreshed, and it provides a change of routine for Charlie”

It also means that Charlie gets to spend time with someone else, the respite carer, so it provides a nice change of routine for him.