Providing personal support to improve quality of life and independent living
From the moment of diagnosis your life will have changed. Being faced with a whole new world of medical understanding, while also needing emotional support and practical information about your new daily life.
We’re here to support you, and your family, along this journey. To help, listen, and connect you with others who understand what it means to live with a muscle-wasting condition.
Our new Here for you: Clinic support programme addresses a growing need for support in local communities, such as help accessing disability benefits, signposting to relevant services and understanding the realities of living with a muscle-wasting condition.
This new commitment will see our information and advocacy services sitting alongside the expertise being offered in clinic by healthcare professionals to give individuals and families living with a muscle-wasting condition rounded support in all areas of life. By offering tailored, region-specific support to clinics, our teams will be able to call on the complementary services we offer and join up your care. This will ensure you have access to all the resources and community support you need as well as the best of specialist healthcare. Our new commitment will also see development in clinical research and quality of life initiatives.
We have already established work in clinics in London, Wales, and Northern Ireland. We will be investing in four further Advocacy and Information Officer roles at Great Ormond Street Hospital, Oxford, Newcastle and Scotland.
Advocacy and Information Officers:
- discuss practical and financial support that people might be entitled to
- support with grant applications, for example DWP benefit forms, housing grants
- connect people with others in a similar situation
- offer support through our Freephone helpline and email
- organise support group meetings and information events for individuals and families
- support applications to overturn unsuitable care packages, if required
- signpost medical questions to healthcare professionals.
The role here in Newcastle would provide essential support to our patients and their families. It is vital that patients receive the necessary care and assistance at home and in the community. An Advocacy and Information Officer role is pivotal to ensuring our users receive the highest quality health, education and social care services.”
Dr Chiara Marini Bettolo, Consultant Neurologist, John Walton Muscular Dystrophy Research Centre
People are mostly diagnosed at clinics, so if we want to help them we have to be there. MDUK doesn’t just fund research, it advocates for people, and it wants to see their quality of life get better. If we can be there from the beginning then we can help make their lives that bit better.”
Robert Warner, Muscular Dystrophy UK Trustee and dad of Eoghan, who has Duchenne muscular dystrophy