19 March 2007

Over the last few months the Muscular Dystrophy Campaign has been working in partnership with our scientists and clinicians, under the guidance of our Trustees, to review the services that we offer and the way that the charity runs itself (its governance). This has been the first phase of a lengthy review of the charity’s direction and strategy, which has been driven by a number of factors.

Firstly, a review was long overdue. Secondly, the external environment for research and care within the NHS has changed considerably. Finally, the nature of the voluntary sector’s relationship with Government is subject to much discussion and is evolving quickly.

The second phase of our review involves us going out to the Muscular Dystrophy Campaign’s friends and supporters and to discussing our priorities. A booklet outlining our goals along with a simple feedback questionnaire will has been sent out to members inside the Spring 07 issue of Target MD. We will then continue with face-to-face discussions throughout the spring and summer with our support groups and branches, culminating with our national awareness week in late September.

Growing the charity over the next three years
We welcome your ideas, comments and suggestions on the objectives in four main areas:

1. Research
 Our research objectives are to:
  • increase funding for our active programme of projects in basic and clinical research
  • ensure the Muscular Dystrophy Campaign is the first point of reference and most trusted voice in the UK on muscular dystrophy research, providing information and commentary on developments in treatment, practice and research – whether through the website, publications, the media, professional networks or at conferences
  • develop partnerships with other funders
  • create the conditions necessary to encourage promising young scientists to remain in the world of muscle science by establishing a PhD and career development programme
  • encourage open discussion and the wider involvement of people living with muscular dystrophy on scientific issues


2. Care
 While continuing our Muscular Dystrophy Campaign Care Advisor service and a national information and telephone support line we will aim to:
  • involve users more in the development of Muscular Dystrophy Campaign services and progressively widen access to those services, doubling the numbers of adult clients
  • increase the professional knowledge of all those involved in the care of muscle patients, developing our Physiotherapy and Occupational Therapy Networks and taking forward best practice guidelines; ensuring that all other health professionals are aware of the specialist needs of muscle clients
  • develop empowering information for muscle patients, their families and carers
  • offer more opportunities for people living with muscular dystrophy to meet others with the same condition, understand the latest research and clinical management, as well as to share experiences and reduce their possible sense of isolation,working proactively with condition specific support groups to provide united support and a strong,well informed national voice
  • support the European TREAT-NMD network by funding the network coordinator
  • continue to empower wheelchair users to secure the right equipment and lobby NHS Wheelchair Services on muscle clients’ specialist needs


3. Policy and Campaigns
 The Muscular Dystrophy Campaign will be significantly increasing its capacity to campaign effectively at the head of the fight against muscle disease in the UK.We will develop our engagement with ministers,MPs and MSPs, assembly members and peers as well as providers of health and social care, undertaking major campaigning activity to influence Government policy beginning in 2007 with a ‘Manifesto for Muscle’.
In doing this we aim to:
  • establish and present the case for how many people muscular dystrophy affects and what the impact is on their lives and the lives of their carers, so that their needs can be fully understood by those developing health and care policy
  • push for a major increase in funding and resources to develop scientific research into muscular dystrophy from the laboratory and into clinics – towards effective treatments
  • lobby the health departments in England, Scotland,Wales and Northern Ireland to ensure that people living with muscular dystrophy have equal access to high quality services wherever they live in the UK
  • fight to ensure that there are joined-up services across the UK, ensuring people living with the condition have access to comprehensive services that meet their need at every stage of the condition’s progression, and that they know what they are entitled to
  • develop policy and campaigns to support people’s rights – at home, at school, in public places, in healthcare, for the rights of carers, and influencing external organisations by involving our own members and members of condition specific support groups

4. NeuroMuscular Centre (NMC)
 The NMC’s objectives are to:
  • provide specialised training on muscular dystrophy for health care professionals
  • plan the provision, by 2009, of self-catering and self-care residential accommodation at the Centre
  • explore the development of neuromuscular centres in other regions of the UK
  • expand the NMC Design + Print activities, developing a network of home-working graphic designers, and increasing its computing and graphic design training capacity
  • measure and report on the charity’s social and ethical performance, ensuring continuing improvement in service provision

Please let us know what you think: