NMC Midlands Ltd

The Muscular Dystrophy Support Centre (working name of NMC Midlands Ltd) exists to support disabled adults who have the muscle-wasting condition, muscular dystrophy. We do this by providing specialist physiotherapy on a long-term basis, the only organisation in the Midlands region of the UK to do so. Through the Chair of our Trustees Ruth Hereford, who is an American living in the UK, we are beginning to build connections with muscular dystrophy charities in the US. We aim to share our innovative model of hands-on, person-centred physiotherapy with these influential organisations and their followers, in the hope that others will be inspired to open therapy centres using our model, and more... read more The Muscular Dystrophy Support Centre (working name of NMC Midlands Ltd) exists to support disabled adults who have the muscle-wasting condition, muscular dystrophy. We do this by providing specialist physiotherapy on a long-term basis, the only organisation in the Midlands region of the UK to do so. Through the Chair of our Trustees Ruth Hereford, who is an American living in the UK, we are beginning to build connections with muscular dystrophy charities in the US. We aim to share our innovative model of hands-on, person-centred physiotherapy with these influential organisations and their followers, in the hope that others will be inspired to open therapy centres using our model, and more people will ultimately benefit from ongoing therapy for their condition. Global Giving is an ideal platform for us to develop our connections and harness some of the interest that is being shown in our organisation from individuals in the US. What is muscular dystrophy? Muscular dystrophy is a life-long, degenerative disease. It causes the muscles to weaken over time and waste away. There are many types of muscular dystrophies, with a wide variation in severity. Some conditions begin in childhood and are ultimately life-limiting. Others are diagnosed in adulthood. Many people need an electric wheelchair, respiratory interventions, or help from carers to manage everyday tasks. As the person's muscle deteriorates, so does their ability to manage physical things that most people take for granted. Life with this disability can be extremely challenging, especially as historically most people have gone without regular physiotherapy, which can make a significant difference to their lives. Our programme There is currently no cure for muscular dystrophy. However, regular physiotherapy can help improve muscle usage and slow down muscle deterioration. Our motto is "inspiring independence". The main aim is to help each person be the best they can be, for as long as possible, whether that means staying in work or keeping on driving their car, or simply being able to manage pain and have a better quality of life. Therapy is provided by specialist neuromuscular physios, and supplemented by hydrotherapy, osteopathy and complementary therapies where appropriate. Some service users attend several times a month, others only a few times a year (especially where they live far away). Each individual has a personal therapy plan and gets to know their therapists well over time. In fact, our therapists are so important to our service users that 79% reported that their therapist played the primary role in helping them manage their condition, rather than their Consultant. Attending the Centre also helps many people increase their confidence and resilience as they don't have to explain their condition, they meet others who face similar challenges, and feel less alone. We don't discharge our service users, so they can rely on us to manage their condition long-term. Around 10% of our service users are aged 25 or under. These young people have severe dystrophies which onset in childhood, including Duchenne muscular dystrophy. As children, regular physiotherapy is usually accessible and children's hospices often provide strong wrap-around support. But many report the feeling of "falling off a cliff" as they approach their twenties, as support services drop away for adults. Our charity is rare in helping to fill the subsequent "gap" that families face during transition out of children's services. Why are we needed? Historically, therapy for muscular dystrophy has been under-funded. Overstretched, a 2016 report by Muscular Dystrophy UK, found that at least 60% of individuals are unable to access appropriate physiotherapy for their condition. Most people have an NHS Consultant, who they see once a year. Depending on their situation, they may use respiratory or orthotics services too. But the NHS is not well-equipped to provide long-term therapy. Muscular dystrophy is quite rare, so community physios may come across it only once or twice, if at all, in their whole careers. As the muscles cannot regenerate, an informed approach is important. And even where a specialist neuro-physio is available, NHS treatment is usually limited to six weeks, which isn't sufficient for long-term management of the condition. Most of our service users are people who couldn't afford to pay for private therapy regularly. The majority of our referrals come from specialist Neuromuscular Consultants in the major hospitals across the Midlands. Others come from GPs - usually when someone has heard of the Centre and asks to be referred. Satellite clinics Our main therapy Centre is in Coventry. But this year, for the first time we are piloting a satellite clinic, 20 miles away on the premises of Acorns Children's Hospice in Birmingham. Travel is a major barrier for some people with muscular dystrophy, and the objective is to test how to establish a satellite clinic that will work for service users who can't travel far. The learning points from this pilot will inform the set-up of satellite clinics in two more areas, Leicestershire and the Black Country, by 2020. We already have service users living in these areas who can't attend regularly due to distance, and both these areas suffer from an especially acute shortage of neuromuscular support on the NHS. Muscular dystrophy is classed as a rare condition, but it affects 12,000 people in the Midlands. We currently have over 300 registered users, many of whom rely on us for therapy at least twice a month. We don't discharge service users and we receive new referrals each month, so demand for therapy hours continues to grow. Over the past year our weekly therapy hours have increased from 25 to 36 hours, funded by steady growth in fundraising. All the regional Consultants are now well aware of our service, and our profile has gradually grown and spread throughout the muscular dystrophy community. We held an Open Day in February 2018 that was attended by over 80 affected individuals and their families. Our future Our service has grown steadily since its inception five years ago. But we have reached the point where we need to scale up a level in order to genuinely transform access to physio in the Midlands. In order to achieve that, we need to diversify our fundraising activities and increase potential in new income streams. Key to this is improving our online presence, currently an area of weakness, and improve following and scope. We need to develop our skills, knowledge and practice online to unlock potential support (both financial and in terms of profile) for our cause. This investment in our digital footprint would come at the right time. Our charity has a committed team of staff, trustees and volunteers. Over the last five years we have built a service that has proved successful and genuinely life-changing for people living with muscular dystrophy. Our profile is well-established. But we are just at the beginning of the journey. This programme would help us to reach out to our potential audience and take an important step to realise our online potential. We are very excited about the possibility of working with Global Giving and taking an important step towards our digital growth.