Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor

January 17, 2011

Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor

Belfast Telegraph | January 17, 2011 | By Lisa Smyth

A woman with a life-threatening muscle disease has warned lives will be lost if Northern Ireland loses its only specialist care advisor as the NHS struggles to save money.

Northern Ireland will become the only part of the UK without a specialist care advisor for people with degenerative muscle conditions.

Funding runs out for the post at the end of March and so far health bosses have refused to say whether more money will be made available to guarantee the future of the position, which costs the health service just £50,000 a year.

Michaela Hollywood (20) has Spinal Muscular Atrophy and said the specialist care advisor has provided support and assistance during some of the most difficult periods of her life.

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Family’s plea for muscle disease specialist

January 13, 2011

Family’s plea for muscle disease specialist

uTV | January 13, 2011

An appeal to save Northern Ireland’s only muscle disease specialist, whose “life-changing” role is said to be under threat because of a lack of funding, has been launched by a Downpatrick family.

For the past 31 years a specialist care advisor on muscle disease has been in place here, offering emotional and practical support to up to 2,000 affected families.

However funding for the service ends in March and Michaela Hollywood, who suffers from Spinal Muscular Atrophy and also lost her sister to the condition 14 years ago, said time is running out for NHS leaders to commit to keeping the post open.

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