‘ Rachael’s life is hinging on this’
MY wife Rachael lived with mild epilepsy in childhood, having occasional seizures.
By 2003, it was fully controlled, enabling her to drive and she also had a career as a PE teacher.
But, in a very unfortunate twist, rather than the epilepsy returning to normal as expected, four months after giving birth in 2007, Rachael, 42, suffered her first tonic- clonic seizure, previously known as a “grand mal”. Her condition deteriorated, resulting in every seizure becoming life- threatening.
In 2009, a package of care was set up through the NHS Continuing Healthcare scheme. It costs approximately £ 50,000 per year and enables me to go to work.
We had an annual review in April 2017 and all was fine. But five months later, the care agency said they were reducing their service as they were not being paid on time by West Hampshire Clinical Commission Group ( CCG). It transpired the CCG had no record of the flexibility available within the package. Contrary to evidence from experts, West Hampshire CCG concluded eligibility was now in doubt.
Maggie MacIsaac became CEO of West Hampshire CCG in the summer of 2019. She accepted we were right about the flexibility and also stated my wife is eligible for NHS Continuing Healthcare.
But her offer of an independent review was withdrawn. The toll is immense. I’m 42 but have lost my career as executive head teacher. I’ve suffered from depression and anxiety and the physical and mental health of Rachael and our son has been affected.
We cannot lose this battle. If we do, we will either be bankrupt or my wife could die as a result of a seizure.