Focus on newborn screening in Parliament

We were in Parliament this morning for the latest session of the All Party Parliamentary Group for Muscular Dystrophy. The national neuromuscular work plan and a discussion on newborn screening were the main items on the agenda.

It was great to be joined by our supporters from across the country who all made excellent contributions during the meeting.

Our Chief Executive, Robert Meadowcroft, provided the charity’s perspective and views on the ongoing work being undertaken by the NHS.

Following a positive discussion on the progress being made on the national neuromuscular work plan, we heard some of the arguments for a newborn screening programme for Duchenne muscular dystrophy as well as areas of concern to address. Dr Ros Quinlivan brought the clinician perspective to the discussion, Dr Janice McLaughlin explored some of the ethical and social issues and our Director of Research, Dr Marita Pohlschmidt, contributed to the discussion with details of clinical trials. It was stressed that it is absolutely vital to put in place a support structure at the time of diagnosis.

This includes the essential Care Advisor support, now NHS-funded, which has increased in the last couple of years. We are committed to campaigning for further increases in Care Advisor posts to ensure that all people with neuromuscular conditions across the UK have access to this crucial support.

For more information on the session, please get in touch on 020 7803 4839 or by email at j.kingsley@muscular-dystrophy.org

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