“The service is friendly, professional and organised”

Felix is a 19 year old young man who lives at home with his Mum and his younger brother in Norfolk. Felix has Downs Syndrome, Lennox-Gastaut syndrome and Wolff-Parkinson-White syndrome. Felix’s rare form of epilepsy is resistant to most treatments. Felix’s epilepsy is life threatening and his Mum Annie has a very high level of skill in monitoring and managing his condition. Annie, Felix’s Mum is his main carer and he requires constant care and support. Annie kindly agreed to talk to us about her families’ journey with personal health budget and HomeCareDirect.

When asked to tell us about Felix and how HomeCareDirect and personal health budgets have worked for them this is what Annie told us:

“I have been looking after Felix for all of his life. He lives at home with his brothers in our family home. He has complex medical needs and is profoundly disabled. He has downs syndrome, Lennox-Gastaut syndrome (a rare form of epilepsy) and Wolff-Parkinson-White syndrome (an electrical problem with his heart). Since Felix left school I have become his paid full time carer and support him at home and at a farm that he visits with me.”

“There are not many downsides to having his own personal health budget. I can choose a care package for him that is tailored to his individual needs. There is quite a lot of paperwork (log notes, time sheets, medical charts, epilepsy forms) that need to be filled in each month. The basic training is quite intense at the beginning but manageable and very straight forwarded.”

When asked if there has been an improvement in Felix’s health and well-being since having a personal health budget Annie said:

“He has a life threatening condition but I feel we are managing a balance of normal home life with day care. He has a wonderful life and is cherished by the service users at the farm. I am now being paid a decent wage to look after him so I can pay the mortgage and look after his brothers.”

Annie’s response when asked if she would recommend HomeCareDirect and personal health budgets to other people was very positive, she said:

“Yes! I was surprised how supportive people have been and how much choice we have. HomeCareDirect have allowed me to work. They manage the budget beautifully. Any queries are easily answered. The service is friendly, professional and organised. It is frightening coming off benefits and being employed plus it’s complicated and HomeCareDirect have held my hand during this process. The staff and outreach workers genuinely care about Felix’s well-being. Any change in life is scary at times but him having his own personal health budget through NHS continuing healthcare has worked well, his key worker and social worker have been very important too.” 

We would like to extend our warmest thanks to Annie and Felix for allowing us to share their story and experiences of personal health budgets and HomeCareDirect services with you.