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MP takes on Dawn’s fight to get sight-saving care

Wednesday 15th August 2012 (Andrew Griffiths)

AN MP has asked the Government to review the availability of treatments for a rare eye condition in a bid to help a sufferer denied sight-saving care.

Burton Tory Andrew Griffiths wrote to Health Secretary Andrew Lansley after being asked for help by Dawn Thomas, a Branston mother refused medication despite its availability elsewhere.

As previously reported by the Mail, the 44-year-old secretary suffers from pseudoxanthoma elasticum (PXE), a hereditary condition characterised by the calcification of elastic fibres that normally occur in the skin, eyes and cardiovascular system.

Though diagnosed more than two decades ago, her PXE has worsened in the past year and she has now lost vision in her left eye and is having trouble with her right.

Desperate, Mrs Thomas asked South Staffordshire Primary Care Trust (PCT) to fund treatment but the organisation, which played a key role in the closure of Burton’s Margaret Stanhope Centre, turned her down, arguing her case was not exceptional enough.

Mr Griffiths has now taken up her case and is determined to secure treatment he believes is rightfully hers.

“Dawn has come to my surgery and it’s hard not to feel for somebody who is so frightened and desperate as she is,” he said.

“We all value our sight, probably above everything else, and to know there’s a potential cure and not be able to access it is just so distressing.

“There’s clearly something wrong with the system when a cure that could prevent somebody from going blind and is available at a reasonable price is not prescribed because of bureaucracy.

“If I put myself in Dawn’s position I would want to do everything possible that science and medicine could provide and to have the response she’s had from bureaucrats is just unacceptable.”

The MP said the care Mrs Thomas wanted was ‘exactly what the NHS is all about’.

“I have written to the PCT asking them to reconsider, particularly given the outrage their actions have caused among the public,” he said.

“Secondly, I have written to the Health Secretary asking him to do an urgent review of the availability of treatments for PXE.

“While this is not a common illness, it’s not rare, and we should be providing the treatment that can make such a huge difference.

“If we compare the cost of the treatment to the loss of tax Mrs Thomas pays in her job and the benefits she would need to claim from the Government if she were to go blind, clearly it’s in everybody’s interests that she receives proper treatment.”

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