I am Jean Riley, the mother of a beautiful 26 year old daughter who has profound and complex needs.
When we adopted our daughter from an orphanage in Romania, we thought we were bringing her home to die between clean sheets, but she survived. She was 5 years old and weighed just 12lbs. She has multiple health needs including heart disease, liver disease, sight and hearing problems, deformed feet and what can only be described as post traumatic stress disorder, which manifests itself in extreme self injurious behavior. She could not sit up, walk, or crawl, and was very depressed. We later added autism and attachment disorder to the list of problems we would face in the future.
After years of operations and changes in our work patterns to accommodate 24 hour care, someone asked us who our social worker was. We did not have one. The following night a social worker appeared and we started on a journey of services trying to support our daughter. It was chaos. No one knew what to do or how to help. Eventually we were put on a pilot scheme for direct payments for children. This worked well, with staff being trained by us.
On retiring we moved to a house in a different local authority to offer our daughter a lovely environment in which to live. This began a horrendous battle with the new local authority to obtain support that would work for us. Their system was very different from the old local authority. When we did receive support it had to be given by an agency. We were shocked at the low standard of care provided by agencies and our daughter regressed into depression once more. After battling for years, which no family should have to do, we were finally given a personal health budget which has transformed our lives.
The budget is large as our daughter requires round the clock care and two to one support for many hours of the week. I manage the budget myself, and this has given us choice and control over how the money is spent and how we meet our daughter’s health needs.
There are different ways of managing a personal health budget, and different ways of handling the money. There is plenty of support for anyone who chooses to take on a personal health budget, but most important is that the budget stays true to purpose and that the person receiving the budget has full control and choice of how it is spent to meet their health needs which would be agreed in the care plan. For our family it has been the only way to get the standard of care required to allow our daughter not only to have a life, but a life well lived.
Our daughter lives in rooms that we had built onto our house, and we employ a team of eight personal assistants (PAs) to care for her. We would like a larger team but our daughter is too insecure to tolerate more people. Our team undergo a bespoke training package, which includes mandatory training as well as training to address the specific needs of our daughter.
My daughter’s PAs support her 24 hours a day: they support her with her personal care, to keep her home clean and to have a safe environment in which to live, to enable her to join the community in many activities, to go to discos and the theatre, to have days out, to go for rides on her bike, to meet her friends and to have fun. The PAs encourage her to do things for herself and to move her forward in as many ways as possible, creating opportunities to promote independence. They look after her health needs, support healthy eating, and maintain her healthy weight. They enable her to live as calm a life as possible, which reduces her anxiety and self-injurious behavior. The team is highly trained and is constantly looking for more training or knowledge to help them deliver the high standard of care required to enable my daughter to live a fulfilling life.
Our team has been trained on what “inclusion” really means and how to integrate our daughter into our local community. We do not use day services, as there is no need for us to do so.
All of this is underpinned by a “whole person” care plan that I wrote with our PAs and some professionals. As a parent I know my daughter best, and as a carer it’s so important that my voice is heard when crucial decisions are made about her care.
Our daughter’s life is full of fun and outings; she goes to a disco run by adults with learning difficulties, she goes to a drop in run by adults with learning difficulties, she goes to a community centre run by parents two days a week, she goes to the theatre and to music gigs—she has a full and active life. Our daughter could not walk until she was 9 years old and could not stand up without support until she was 11 years old and our latest adventure is taking her to a roller disco. Our goal is to get her on a pair of skates and have the experience of gliding round the hall at least once. The attendants that skate round to help people have got used to watching our daughter and now whizz her round in her wheelchair at the end of the session.
The benefit to the NHS is that we have trained the staff how to handle all the health issues our daughter has and we have reduced the amount of medication our daughter takes. We no longer go to A&E. We no longer go to hospital twice a year to have her ears drained and treated. We no longer rush to medicate her when something is wrong; we try to find out first what is wrong.
Finally our budget has enabled my husband and I to have our first break away in 21 years and we have a happy daughter who has a very high standard of care and enjoys her life. When she goes to bed giggling, everyone has done a good job, and the NHS has had value for money.
Competing interests: None declared.