Identifying priorities for improving North West services

I was in Liverpool on Wednesday for the latest North West Muscle Group meeting. It was great to see familiar faces and to meet some of the charity’s North West supporters for the first time.

Our panel of experts were Alison Brown, Liverpool Neuromuscular Care Advisor, and Fran Binici and Janet Pitchford, Specialist Nurse Practitioners based in Manchester.

We covered several aspects of neuromuscular service provision which need to be improved urgently and our panel were able to provide practical steps to resolving difficulties raised during the meeting.

Our discussions highlighted on many occasions the lack of support in adult neuromuscular services compared with paediatric neuromuscular services, as well as the need to significantly improve the transition between the two services.

Alarming experiences in relation to care packages and housing adaptations demonstrated that a ‘postcode lottery’ exists depending on the local authority people with muscle wasting conditions are living in.

Muscle Group members agreed at the meeting to write to their MPs to highlight the shocking gaps in services in the region. The Muscular Dystrophy Campaign will be seeking answers from the new NHS specialised commissioning organisations in the region to establish what action is being taken to improve specialist neuromuscular care.

For more information on the meeting and our campaigning in the North West, please get in touch on 020 7803 4839 or by email at j.kingsley@muscular-dystrophy.org

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