Thomas has Lennox Gastaut Syndrome. Early prognosis and treatment was problematic and inconsistent, with no clear picture from clinicians and other experts of what the future would hold for Thomas. This inevitably caused significant stress and anxiety and we were given very little choice or information as to how Thomas could be supported or how his complex medical needs could be met. As Thomas’ epilepsy was difficult to control at home, we felt he may be better supported at a specialist centre for people with epilepsy. This residential placement was based over a hundred miles away from his family home and proved to be 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As a result, Thomas became withdrawn and was unhappy. His weight dropped rapidly causing serious concerns for his health. With the support of our GP and Social Worker, Thomas returned home and we decided, the only way to keep Thomas safe was to take control over his care. This was met through a local authority funded direct payment. Under this arrangement we employed and trained Thomas’ Carers, who followed his Care Plan, with our support. We also managed the care on a day to day basis, through a circle of support, including input from School, Neurologist, GPs and other Clinicians.
This new way of working transformed Thomas’ life for the better. His weight improved and he became healthier and much happier. We demonstrated that we did know Thomas better than anyone else, and as experts by experience, we were able to ensure that Thomas could live the life he wants to live and is able to make changes when required. We received local authority direct payments for 9 years, until Thomas was 18. At this time he was assessed and qualified for fully funded continuing healthcare. However, the choice and control Thomas had previously benefited from was no longer available to him. The NHS had just completed a 3 year pilot for Personal Health Budgets, which would allow Thomas to continue to benefit from choice and control over his health and wellbeing, however at that time they were unable to offer this option. This meant we had to submit a proposal and detailed care plan to demonstrate how Thomas’ needs could be met through greater personalisation than the traditional model of agency support deployed by the NHS for people who qualified for continuing healthcare. We contacted the National Peer Network for PHBs, who provided invaluable support and practical advice and information from people who had lived experience of PHBs. By working with the Peer Group Network, we were able to produce a detailed proposal and care plan, which contained processes and protocols and, importantly, measurable outcomes and clear roles and responsibilities for Commissioners, Thomas’ Representatives, Third Party Provider and Care Staff to ensure Thomas is safe and receives the best possible care. Our proposals were fully supported by Healthwatch and approved by the local NHS Team. Thomas’ PHB was in place on 1st April 2013.
To ensure we focus our time and effort on Thomas, we use a Third Party to help us manage Thomas’ budget and to provide additional support with HR and Training for a larger care team. This arrangement is working well and, importantly ensures we can demonstrate to the local NHS that Thomas is safe and that his money is used efficiently in a targeted way to support delivery of his care plan. We are now working locally and nationally to promote PHBs and other families are now starting to benefit from this new, and better way of delivering quality care to some of the most vulnerable people in society.