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Mum’s plea for help in fight for disabled son

Sue Hardman with son Charlie, four, who has Duchenne muscular dystrophy

Sue Hardman with son Charlie, four, who has Duchenne muscular dystrophy

The mother of a young boy diagnosed with a muscle-wasting disease has admitted she felt “almost suicidal” by the vacuum of advice and support from the NHS.

Sue Hardman, 42, of Garstang, says her family has been struggling to cope since Charlie, four, was diagnosed with Duchenne muscular dystrophy last November. It causes the muscles throughout the body to weaken and waste over time and few with the condition live beyond 30.

The family are unable to see specialist neuromuscular care advisors based just an hour away at hospitals in Liverpool and Manchester as they do not cover the Lancashire area.

Sue has condemned NHS Lancashire leaders for creating a “blackhole” in the county, where 1,500 families are struggling to cope alone with muscle-wasting conditions.

She said: “It was a year after we first started looking into the problems with Charlie’s walk when we finally received a diagnosis.

“When he was finally diagnosed with Duchenne it knocked me into pieces. We had this horrific news to deal with and at the same we were scrabbling around desperately for information.

“Trawling websites to find out about this kind of condition is something I would not wish on my worst enemy.

“Our neurologist has been great, but he is there to deal with the medical side - not how to manage Charlie’s condition day to day.

“I understand waiting lists for consultants are a fact of life, but in areas where they have enough care advisors, they are on the phone to parents within days.

“Local Primary Care Trusts need to understand the consequences of refusing to invest a small amount to secure a care advisor for the area.”

Nic Bungay, the Muscular Dystrophy Campaign’s director of campaigns, care and support, said: “It is sickening to hear that parents of young children diagnosed with a debilitating, life-shortening condition are being forced to resort to Google to find out information about their child’s future.

“By agreeing to put a relatively small amount into the pot for a care advisor in Lancashire, health bosses will not only dramatically reduce suffering and improve quality of life for thousands of families, but also save the NHS money in the long-run through avoiding emergency hospital care.”

Dr Jim Gardner, medical director at NHS North Lancashire, said: “We are happy to discuss the family’s concerns and would encourage them to contact NHS North Lancashire directly.”

A spokesman for Lancashire Teaching Hospitals NHS Trust, said: “We have recently reviewed services for children with muscular dystrophy and are currently working towards re-distributing existing funding to enable us to recruit a specialist nurse.

“We aim to provide high quality and responsive services for all patients and this new post would offer additional care and support for children and their families.”

 

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