Information for young people: transition

When we talk about ‘transition’ in relation to your neuromuscular condition, we mean the process of preparing for, planning and actually moving from children’s to adult services.

Transition should be a gradual process that should happen when you’re ready. A lot of young people have told us that they didn’t feel supported when they transitioned so if that is the same for you please speak up and contact us – we are here to help.

  • Our transition guide for young people can be found here. It contains a range of tips and suggestions from other young people to help you as you move into adult’s health, social care and education services.
  • Our video of two young people talking about what it’s like to live with a muscle-wasting condition. Zoe and Sam give advice and suggestions to other teenagers their age and talk about their experiences, both good and bad, and their desire not to be defined by their condition.
  • There is official guidance on what transition services should look like from the National Institute for Health and Care Excellence which you can find here.
  • Additionally many hospitals now use a programme called ‘Ready, Steady, Go’ to help with transition. This programme is a way for your doctors and healthcare team to make sure that they are helping you to learn all the knowledge and skills you need to manage your condition. You can find more information on Ready, Steady, Go here.
  • If you are not sure if you’re ready for transition, why not take a look at our care plan. The care plan is designed to be filled in by a person with a muscle-wasting condition and the various health professionals you see. If you feel confident in filling this in and asking for help with it, you might be on your way to moving to adults services
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