Transition to adulthood and adult care in Duchenne muscular dystrophy

Duchenne Care UK Transition Project invites you to share your experience and views on transition to
adulthood and adult care in Duchenne muscular dystrophy.

1-2-1 sessions at New Horizons

We are delighted to welcome Lisa Cutsey, Roald Dahl Neuromuscular Transition Nurse Specialist from Leeds Teaching Hospitals NHS Trust. Lisa will be offering parents and caregivers the opportunity to feed into a UK‑wide, DMD‑specific transition pathway project to improve how young people aged 14–25 and their families are supported during this important time. We would value your voice.

We are inviting parents and carers to take part in a one‑to‑one conversation to share their experiences, hopes, worries and concerns about transition. We’d also like people to join online focus groups over the course of the project.

Your input will help us:

  1. Understand what works well and what needs improving.
  2. Identify gaps in information and support.
  3. Shape resources that are genuinely useful for families and young people.
  4. Ensure the pathway reflects real experiences, not just policy.

  1. A confidential one‑to‑one session(face to face).
  2. A chance to talk about your experiences of transition.
  3. No preparation needed.
  4. Your feedback will directly inform future guidance and resources.

  1. To develop a DMD‑specific transition pathway to guide healthcare professionals, people living with DMD and their families. 
  2. To develop practical toolkits that will educate and empower users. This may include topics on: Financial support information (e.g. PIP), education, employment, and social care support, legal and planning guidance, developing independence. 

Benefits of taking part

At New Horizons, you can book an appointment to ask questions and share your hopes and concerns regarding transition with a transition neuromuscular nurse specialist. At the same time, you will be helping to shape the direction of the project by sharing your experiences.

After New Horizons, parents and young people with DMD can choose to take part in an extended focus group and working group sessions which will be compensated in line with NIHR policies.

Your experience matters, book a 1-2-1 discussion now

By sharing your journey, you can help create better more consistent transition support for young people with Duchenne and their families — now and in the future. So if your child is between 14 – 25 years old, please do consider registering for one of the sessions taking place throughout New Horizons and/or express your interest in the online focus groups.

More information about planned online focus groups will be shared in March with people interested in participating. To express your interest in joining these sessions, register here.

Registration for New Horizons 1-2-1 Sessions