Jean Riley: A carer’s perspective on personal Health BudgetsPosted on: June 10, 2015
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.