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Muscular Dystrophy Campaign
Ian Gibson MP joins the fight against muscle disease
Ian Gibson, MP for Norwich North, was joined by the Health Minister Ivan Lewis MP and supporters of the Muscular Dystrophy Campaign at an event in the House of Lords last night, to raise awareness of muscle disease and to call on the new Government to pay more attention to young adults with disabilities, who often face difficulties when transferring from children’s to adult’s services – the ‘transition’ phase.
With cross party support, Ian has signed an Early Day Motion in the House of Commons urging the new Government to consider establishing a network of health and social care professionals with an expertise in transition to ensure that all young adults with neuromuscular conditions receive appropriate care, support and information tailored to this crucial stage in their lives.
Commenting on the event, Ian Gibson MP said: “The nature and quality of health service provision too often fails teenagers with disabilities.The standard of services for young adults with conditions such as muscular dystrophy is not as well developed as those in paediatric clinics. It is essential that the Department of Health and local authorities work to bridge this divide and improve joint working between children’s and adult’s services.”
Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, said:“I’m delighted that Ian was able to join us in recognising the contribution to the fight against muscle disease made by many people from all walks of life.I hope that we can now work together in ensuring that the needs of people living with muscle disease are at the top of the health and social care agenda.”
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Notes:
- Photographs of the event are available showing Ian with Baroness Thomas of Winchester, a peer with limb girdle muscle disease and Baroness Sharp of Guildford
- The high-profile event was hosted by Baroness Thomas of Winchester. It was attended by Ivan Lewis MP, Minister for Health with additional guests including the Lord Speaker. Sir Bert Massie, Chair of the Disability Rights Commission was guest speaker.
- Dave Anderson MP, Chair of the All Party Group on Muscular Dystrophy, introduced the following Early Day Motion in the House of Commons on behalf of the Campaign, with support across the political parties: That this House welcomes the publication of Aiming High for Disabled Children: Better Support for Families, the HM Treasury and Department for Education and Skills review of disabled children's services, in particular the recognition that the transition between children’s and adult’s services can be problematic, further notes that the standard of services for adults with neuromuscular conditions is not as well developed as those in paediatric clinics, calls on the Department of Health and local authorities to bridge this divide and improve joint working between children’s and adult’s services, and urges the Government to consider establishing a network of health and social care professionals with an expertise in transition to ensure that all young adults with neuromuscular conditions receive appropriate care, support and information tailored to this crucial stage in their lives.
- The Muscular Dystrophy Campaign is the only national charity focusing on all muscle diseases.
- The Muscular Dystrophy Campaign invests £3 million a year in care support services, muscle centres, networks, information, resources and research. It has pioneered the search for treatments and cures for over 47 years and provides practical, medical and emotional support to people affected by the condition.
- More than 30,000 people in the UK have muscular dystrophy or a related muscle disease. A further 120,000 (carers, parents, siblings) are affected.
- Muscle diseases weaken and/or waste muscles. Most are generic and can affect people of all ages, backgrounds and nationalities.
- There are currently no cures.
Web: www.muscular-dystrophy.org