As Chair of the All Party Parliamentary Group for Muscular Dystrophy, it has been my privilege to meet many wonderful people and families living with muscle disease from across the UK.
I recently hosted a reception at the Commons for over 50 young disabled campaigners, families and supporters from across the UK to launch Trailblazers - the Muscular Dystrophy Campaign's new volunteering project.
I was chuffed to see so many young people making a positive change. The views of young people are too often ignored. Just because you are young or disabled doesn't mean you can't make a positive difference in your local community.
Their determination and spirit is essential if we are to improve conditions for more than 60,000 people who have muscle disease or a related condition. A further 300,000 people are affected indirectly as family, friends or carers.
Muscle diseases weaken and/or waste muscles. The conditions can be inherited or acquired and can affect people of all ages, backgrounds and nationalities. There are currently no cures.
Time and time again, I hear of the important role physiotherapy plays for those with muscle disease. Without it, mobility and independence can suffer and in some cases their condition can rapidly deteriorate.
Early and ongoing provision of physiotherapy can also help reduce unplanned hospital admissions and the number of GP visits.
I was shocked to learn of the hardships adults and children are often forced to endure when accessing specialist physiotherapy services on the NHS.
For many patients, physiotherapy is essential in maintaining the best possible quality of life, for as long as possible. However, the charity's report, Focus on Physio, published on the day of the lobby as part of the Building on the Foundations campaign, found that many patients with muscle disease do not receive long term, specialist physiotherapy, or in some cases, any physiotherapy at all. As a result, they are then forced to pay for these services privately or go without.
The situation is particularly difficult for young adults, as their physiotherapy is often immediately withdrawn as soon as they reach 16. Parents are rightly concerned about their children's access to physiotherapy once they reach adulthood.
This is why I wholeheartedly support the plans to develop a new Muscular Dystrophy Campaign project in the North East. This new social enterprise is being developed in Newcastle to be a centre for the whole area. It has two exciting components which will transform the lives of families living with muscle disease, both from the region and from neighbouring areas.
First, the new centre would provide ongoing, specialist therapies and support services for adults living with muscle disease, and particularly physiotherapy. The existing Muscle Team from the International Centre for Life will also be moving to the centre and will provide services there.
Second, the new centre will offer training, business support services and direct employment for people diagnosed with muscle disease. The training centre will provide in-house and home based courses; extended outreach to supported training opportunities with local colleges and universities, as well as home based learning opportunities.
40% of people of working age who are out of work in Britain are disabled. Access to such dedicated employment advice and support is essential to ensure disabled people are able to lead fully independent and fulfilling lives.
'Muscle Enterprises north east' is the name given to the innovative response by the Muscular Dystrophy Campaign to the challenges faced by people living with muscle disease. I give this project my full support. This new local partnership, between the NHS, Newcastle College, the voluntary and private sector, will not only provide training and employment opportunities, but also specialist treatment and services. Even more importantly, from the outset, the project is being developed in partnership with people who are affected by muscle disease. I am delighted to see such a ground breaking partnership developing in our region, building on the best locally and responding to today's challenges.
| Promoted by Paul Foy on behalf of Dave Anderson, both of St Cuthbert's Church Hall, Shibdon Road, Blaydon, NE21 5PT |