Connah’s Quay campaigner launches bid to help young ME sufferers

From the Flintshire Chronicle, 3 June 2010 (story by Dave Goodban)

A PENSIONER with ME is launching a crusade to get the NHS to open a centre dedicated to helping children with the condition.




Committed campaigner Barbara Turnbull, 77, started the Clwyd ME Support Group after developing the debilitating neurological disorder in 1988.

Barbara, from Connah’s Quay, was the driving force behind the opening of two specialist treatment clinics for adults 11 years ago. Now she wants the NHS to help children and young people with ME.

Barbara, who is chairwoman of the Clwyd group, said: “It has recently been brought to our attention that there is a lack of provision for specific treatment for children with ME in North Wales, so the Clwyd ME Support Group is now going to campaign for such a clinic.

“What we will do is get a petition going. We’ll get as many names as possible then we’ll approach the health board and we’ll see what they say.”

In a letter to the Chronicle Barbara said she needs to find out how many under-18s in North Wales suffer from ME.

She also wants case studies before going to Betsi Cadwaladr University Health Board and imploring them to take action.

Tony Britton, spokesman for the ME Association, said very few health bodies in Britain hold figures about the number of ME sufferers in their area. But he said that about 4,000 people in every million are affected by it. Of those, about 20% will be children and teenagers.

Based on that formula about 550 under-18s in North Wales – including 120 in Flintshire – have ME, for which there is no cure and no universally effective treatment.

Fifteen years ago Barbara began campaigning for an adult ME clinic and now there are two, in Connah’s Quay and Llanfairfechan. And she is prepared for another battle this time around.

“When you’re a child you want to be out playing, not stuck inside feeling awful,” she said. “It’s bad enough for an adult, let alone a child.

“The first time round they said they’d look into it, then they said they had no plans for a clinic, but we didn’t give up and we got there in the end. “If we get refused or ignored this time we’ll go back again, we won’t give up.”

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