We know that there may be times when you are finding things difficult and you might not be sure what support or information you need, and that’s ok too. Our team are here with a warm, listening ear and will do their best to make sure you have the information you need to help you.
Our Information, Advocacy and Care team are also here to support individuals and families when they are having difficulty in accessing what they are entitled to, when their needs or wishes are not being listened to, or when their condition has not been understood. In these instances, where you need some extra support, the Information, Advocacy and Care team at Muscular Dystrophy UK can provide informal advocacy. This means that there will be times when we can become involved and talk to other people on your behalf if you ask us to.
Some of the areas where we may be able to provide support and advice are outlined below:
- Benefits
- Equipment
- Housing
- Access to care
- Adaptations
- Education
We want to support you as best as possible to achieve a positive outcome, and alongside speaking to others on your behalf, we will also support you to self-advocate. Self-advocating is about speaking up for yourself, to make sure that your needs and wishes are being heard. It can be a useful skill and a powerful tool which can help to give you more control over important life decisions.
There may also be times when our team might need to signpost you or refer you on to another service or organisation for additional support. We might do this when we think your situation would benefit from more specialist or formal input. For example, you may require help from a formal advocacy service or if you require legal advice. We will let you know when we think this may be needed.
How you can get in touch
You can speak to one our team by contacting the Muscular Dystrophy UK helpline on 0800 652 6352 or by emailing info@musculardystrophyuk.org.
It’s also important to have support that is specific to you and the area you live in. Our regional teams across Scotland, Northern Ireland and Wales are on hand to assist you, wherever you’re based in the UK.
If you would like to speak to one of our regional team, you can contact them directly using the information below.
Scotland
Jackie Munro - j.munro@musculardystrophyuk.org
Wales
Lucia Gillespie - l.gillespie@musculardystrophyuk.org
Northern Ireland
Lesley Banks - l.banks@musculardystrophyuk.org
We understand that these are difficult times, and you may be experiencing distress and concern. If you’re feeling overwhelmed, stressed, or anxious, and you require support with your mental health, please book a GP appointment or contact:
Samaritans - 116 123 (every day: 24 hours)
Give us a shout - text 85258 (24-hour text service)
British Red Cross - 0808 196 3651 (every day: 10am - 6pm)
You can also find further information on the NHS website.