A scheme tested by NHS Kent and Medway to allow patients control of Personal Health Budgets is now being rolled out across the country for NHS Continuing Healthcare patients.

NHS Medway and NHS Eastern and Coastal Kent were among 60 areas which trialled giving NHS Continuing Healthcare patients the choice of controlling the money for their care and support if they wanted to.

A Personal Health Budget is money to pay for a patient’s healthcare needs. Patients are told their Personal Health Budget and someone from the team will work with them to agree the best way to spend it so it meets their clinical needs. It gives patients more of a say in how they want to spend the money for their healthcare.

Evelyn White, Associate Director, Integrated Commissioning, NHS Kent and Medway, said: “The three-year pilot schemes showed that Personal Health Budgets helped people with the greatest health needs the most, they improved quality of life and some even resulted in reduced hospital attendance.

“Personal Health Budgets will initially be targeted at people who are already getting NHS Continuing Healthcare.

“This means that anyone on the NHS Continuing Healthcare scheme will be able to ask for a Personal Health Budget by April 2014. Each patient’s arrangements will be reviewed regularly every three to twelve months.”

Personal Health Budgets give a seamless transfer of funding arrangements for people moving between adult social services and children’s social services to NHS Continuing Healthcare.

Personal Health Budgets can work in three ways:
• Patients can have a notional budget where they say how they want to spend the money and, if the local NHS team agrees, the NHS arranges the patient’s care and support.

• An organisation, such as a charity, looks after the patient’s budget for them and helps them decide how to spend it. If the local NHS team agrees, the organisation buys the care and support for the patient.

• Patients have a direct payment for healthcare. If the local NHS team agrees, the patient can buy and manage their own care and support.

Patients have to tell the NHS what they are spending the money on and it can be used for personal care, training to look after themselves and equipment to help meet health needs.

Patients do not need to have a Personal Health Budget if they do not want one.

An independent assessment of Personal Health Budgets also found that if half of the people eligible for NHS Continuing Healthcare chose to take the offer of a budget, it could mean a potential saving of around £90 million nationally.

Case studies
Hilary Lister, Canterbury

Hilary Lister, 40, from Canterbury has reflex sympathetic dystrophy, a degenerative disease which slowly limited the use of her body as she became older.

Able-bodied until the age of 15, Hilary is a quadriplegic and paralysed from the neck down. She first knew something was wrong when she had pain in her legs, making it hard to walk.

While studying biochemistry at Jesus College, Oxford University, Hilary lost the use of her legs but carried on with her studies. In 1999, Hilary lost the use of her arms and was unable to complete her PhD at the University of Kent. She has since been awarded an honorary doctorate by the university.

Hilary said: “When my health worsened, it was quite hard to cope with as I was doing really well in my career.”

In 2003, Hilary was introduced to sailing and it transformed her life. She became a record breaker and was the first quadriplegic to sail solo across the English Channel.

She completed the six-hour crossing sailing an adapted 20-foot boat, using her breath to control the steering and the sails through sip and puff technology.

Hilary said: “It has three pneumatic straws which are connected to sensitive pressure switches on a computer to control the tiller, winches and auto-pilot.”

In 2009, Hilary sailed around Britain, a 3,000 mile journey which was made the subject of a film last year. Hilary Lister: A Race Against Time was made by Peter Williams Television.

Hilary is supported by her husband Clifford, who she married in 2001, but eighteen months ago her health deteriorated and two live-in carers began to stay overnight.

As Hilary’s health needs became greater, she became eligible for NHS Continuing Healthcare funding and was given a Personal Health Budget.

Personal Health Budgets mean that Hilary has direct payments and can spend her funds as she wishes. It means she can spend it on a carer to go sailing with her, training them to be able to follow on a support boat and board Hilary’s boat if she needs help.

Hilary says that she wouldn’t be able to sail without control over her own finances.

She said: “Without Personal Health Budgets, I wouldn’t be able to carry on sailing. It means I am in control of my own life and can spend my time doing something I love.”

Hilary added: “When you spend 24 hours a day confined to a wheelchair, or a bed, sailing is the ultimate freedom. I have the wind in my hair and the spray in my face. I feel alive.”

Abby O’Neil, Iwade
Abby O’Neil, 23, from Iwade has a degenerative spine condition which she was born with. Abbys condition means she is eligible for continuing healthcare support as she needs 24-hour care.

Earlier this year, a nurse from the NHS Continuing Healthcare team asked Abby if she wanted to have a Personal Health Budget to give her greater control over her care. A Personal Health Budget means Abby can employ her own carers and doesn’t have to rely on agency staff.

Abby, who completed an HND in graphic design last summer at the University of Greenwich, said: “It is very important to me to employ my own carers. Naturally, when you spend a lot of time with people, you get on better with some than others and I want to know who is coming to look after me. Agencies wouldn’t be able to guarantee who would be coming because of covering annual leave and sickness.

“Having a Personal Health Budget means I am the employer and I’ve interviewed and selected my personal assistants. It means that I am cared for by the people I want to spend time with. I can also decide what we do and when.”

“I have the choice and control over who comes into my home and it has given me consistency and independence, which is so important. I was living with my family but now I’ve been able to move into my own bungalow, as I have employed a team of carers to give me the support I need.”