Thomas and David’s story

My son is safe, healthy and happy – thanks to choice and control’

Thomas Johnston, from Worcestershire, has profound and multiple learning disabilities. A personal health budget was used to fund 24/7 care and support for Thomas at an independent annex adjacent to his parents’ home. Thomas’s father David explains how the positive healthcare benefits for his son have been significant. The personal health budget has also resulted in the “pendulum of power swinging to us”, says David.

Thomas has Lennox Gastaut Syndrome, is multi-sensory impaired, needs one to one support in all aspects of his life and has life-threatening epilepsy. But he also has a great personality, and enjoys music and many sensory experiences, including eating and trips out to hydrotherapy and other therapy sessions.

When Thomas was younger, we decided that because his epilepsy was difficult to control at home, he would be better supported at a specialist residential centre for people with his type of condition.

This residential placement was more than a hundred miles away from Thomas’ home, and it was disastrous. Thomas was neglected, his medication was not administered or managed properly and the care he received was shocking. Thomas’ agreed care plan was not followed. As a result, Thomas became withdrawn and miserable. His weight dropped rapidly, causing serious concerns for his health. The stress and impact on our day-to-day family life was, at times, unbearable.

With the support of our GP and social worker, Thomas returned home. His life changed for the better when we chose to take greater responsibility for Thomas’ care. We wanted to exercise choice and control and decide who looked after him.

Initially, under a local authority-funded direct payment we employed and trained Thomas’ carers who followed a care plan. We also managed Thomas’s care on a day-to-day basis through a circle of support, delivered via different agencies including school, neurologist, GPs and other clinicians.

This new way of working transformed Thomas’ life. His weight improved and he became healthier and infinitely happier.

We received local authority direct payments for nine years. When Thomas was 18 he was assessed for NHS Continuing Healthcare, and became eligible for a personal health budget.

We had to submit a detailed care plan to demonstrate how Thomas’ needs could be met through personalisation, rather than the traditional model of agency support. The National Peer Network for Personal Health Budgets provided invaluable support and advice. Thomas’ care plan for the personal health budget explained what needed to be put in place for him to live the life he wanted. It included details on his condition and specifics on who must make what decision. The care plan explains in detail how to keep Thomas safe from the moment he gets up in the morning to when he goes to bed at night, including protocols to provide his medication, and how to feed him and handle him. It listed how all his healthcare needs should be met, as well as his likes and dislikes. Importantly, the care plan lists measurable outcomes to keep him safe happy and healthy.

Our proposals were approved by the local NHS team, and Thomas’ personal health budget came into place in April 2013. It provides 24/7 one-to-one care and support for Thomas in a specially-designed annex and is significantly less than the cost of residential care. It funds a team of carers, specialist equipment and treatments including physiotherapy the budget is also used to recruit carers. We placed adverts in the local paper and websites. Before we recruit any new carers we invite them to a ‘meet and greet’ appointment with Thomas. We use a third party organisation to help manage Thomas’ budget and payroll, and to provide support with HR and training for the care team. This works well.

The personal health budget has brought immense benefits for Thomas. Firstly, he chooses who looks after him and how he lives his life. Essentially the pendulum of power has swung to us. We decide in partnership with our local NHS team how Thomas is cared for. Also, we can buy equipment – such as a special hoist – that meet Thomas’ healthcare needs, rather than the NHS dictating to us what we had to buy for him. Thomas also now has more freedom from pain and he has an improved relationship with clinicians. Our son is happy.

Without doubt the personal health has significantly reduced costs for the NHS. Before, Thomas used to be admitted to hospital due to constipation or epilepsy on a regular basis when he was in residential care. Now hospital visits are much less frequent. Even though the third party organisation employs Thomas’s carers, the arrangement works out cheaper than the residential placement.

As a family we now work locally and nationally to promote personal health budgets. Other families are starting to benefit from this new, and better way of delivering quality care to some of the most vulnerable people in society