Daily Express

‘ Rachael’s life is hinging on this’

- By Phil Austen- Jones

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But her offer of an independen­t review was withdrawn.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.

 ?? Pictures: JONATHAN BUCKMASTER; STEVE REIGATE ?? Battle... Phil and Rachael have fought for CCG care to continue
Pictures: JONATHAN BUCKMASTER; STEVE REIGATE Battle... Phil and Rachael have fought for CCG care to continue

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