New NHS Structures and Accessible Air travel…Westminster Investigates

Yesterday was a particularly exciting day in Parliament for the campaigns team and kicked off with the All Party Parliamentary Group for Muscular Dystrophy session. The meeting, which was chaired by Dave Anderson MP, involved a panel of experts form the NHS answering questions about new NHS structures which are due to come into place from … Continue reading

Meeting families and clinicians at the Evelina Children’s Hospital.

On the 26th of June I attended a paediatric neuromuscular clinic at Evelina Children’s Hospital led by Dr Heinz Jungbluth to try and gain a deeper understanding of the issues being faced by young people with muscular dystrophy and related neuromuscular conditions. Evelina Children’s Hospital is only 30 minutes walk from the Muscular Dystrophy Campaign’s … Continue reading

Fighting for better care across London

Last Monday Lisa and I, along with neuromuscular experts and NHS Commissioners from across London, attended a Steering Group meeting at NHS London.  The group was set up thanks to pressure from the charity, together with our Life President, Lord Walton of Detchant. DespiteLondonbeing home to some excellent specialist neuromuscular services, there is still only … Continue reading