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A WOMAN left with drastically shortened arms and legs by thalidomide, and incapacitated further by a severe stroke, does not deserve 24-hour home care, an NHS trust has ruled.
Veronica Pakenham, 47, who is wheelchair-bound, is now unable to move out of a hospital ward because Greenwich primary care trust (PCT) refuses to provide funding.
Her case is one of the most distressing taken up by campaigners who want the government to provide financial assistance to thalidomide victims.
Nick Dobrik, the leader of the campaign, which is backed by hundreds of MPs, is to meet Mike O’Brien, the health minister, on Tuesday to discuss the government’s latest proposals.
Since suffering a stroke last year Pakenham, who was rendered incontinent by thalidomide, is incapable of lifting herself out of her wheelchair. Yet a PCT panel has written to her saying it “did not believe the nature, intensity, unpredictability or complexity of your needs are of the level which indicates a primary need”.
Pakenham, who also has diabetes, has been ready to be discharged for six months. But if she attempts to live outside the stroke rehabilitation unit at Hillingdon hospital, west London, she will receive minimal help.
The Thalidomide Trust has written to Andy Burnham, the health secretary, to ask for help with her case but, several weeks on, it has received no reply. Pakenham is also appealing against the PCT’s decision.
Campaigners say thalidomiders need extra help because, as they age, their bodies are breaking down faster and they incur the expense of items such as wheelchairs and modified cars.
They were born with stunted limbs or brain damage after their mothers were prescribed the anti-morning sickness medication in the 1950s and 1960s.
O’Brien is not offering any extra money and says the thalidomiders’ needs can be met, following adjustments, within existing care frameworks.
“What planet is Greenwich PCT living on that Veronica, who has suffered all her life, cannot even get the basics of care?” said Dobrik.
“This perfectly illustrates why the government must agree to ex-gratia payments.
“What Mike O’Brien is proposing is not good enough. We are not going to be tricked or deceived any more.
“Hundreds of MPs signed an early day motion saying it’s vital to make these payments. Surely they can’t be wrong and Mike O’Brien is right.”
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