Hospitals in focus: your stories

As we launch our Hospitals in Focus: health care not health risk report today, I would like to share with you two shocking experiences of hospital visits which serve to emphasise the urgent need for improved specialist care and support for people with muscle disease.

For Lisa Hill from Beverley, who has limb girdle muscular dystrophy, being immobilised to treat a broken bone had catastrophic consequences:

“During my last visit to hospital I was treated by medical staff that did not understand my condition, and as a result I now permanently need to use a wheelchair. I had broken my leg and guidelines for people with muscular dystrophy are that prolonged immobilisation should be avoided. In my case I was placed in a full leg cast for 12 weeks, which allowed my leg muscles to waste away. Unlike other people, I can’t rebuild muscle and the doctors should have found another way to treat me.”

Cath McNicol from Middlesbrough who has spinal muscular atrophy, said:

“Doctors do need to take advice from specialists and there should be a formal route to doing so. Last time I was in hospital the doctors couldn’t decide what was wrong with me and started talking about operating.

“In the end I phoned my consultant from my bedside – the doctors had refused to ring her. She advised that the hospital were not to operate without full knowledge of my condition and faxed information straight over. I dread to think what would have happened if they had gone ahead without this information.”

These are extremely concerning hospital experiences which are completely unacceptable.

Together we can fight to improve specialist care across the country. Get in touch with us on 020 7803 2865 or by email at to find out more about our campaigning action in your area.


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