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Last updated: May 2024

Up until now you will have always been seen by children’s services for any healthcare and treatment. Your parents / carers will have been responsible for your appointments, communicating with your healthcare team and making important decisions.

Healthcare transition is about you gradually taking all this over from your parents as you move towards becoming an adult. It is about you having a good understanding of your SMA and becoming more independent in managing your health needs and making decisions about your care and any treatment.

These discussions often start when you are in secondary school. In some areas, your care may transfer to adolescent services when you are about 13 or 14 years. By the time you reach 16 – 18 years your care usually begins to transfer to adult services. Exactly what happens when varies around the country.

Wherever you live your healthcare team will make sure you are fully involved and comfortable with any plans and have all the skills and knowledge you need. Your parents / carers will also be very important and there to talk things through and pass on tips.  You might talk about:

  • any regular medicines, why they need them, how much to take and how often
  • asking and answering questions about their health and treatments
  • how to organise and keep track of appointments

Over time you might see members of your healthcare team on your own, or for part of clinic appointments or consultations.

It is also worth finding out how the adult healthcare service you will go to will differ from what you have been used to so that you are prepared for the change. For example, if you miss an appointment in children’s services then the team book you in for another one. If you miss an appointment in adult services, you might get discharged and sent back to your GP.

Transition may feel daunting for you. It can also be a difficult time for your parents / carers as they get used to handing over responsibility. It is though something you do together – but in different directions – but even when you do get to be ‘in charge’ it does not mean you cannot still ask for their advice and support.

Health transition happens at the same time as you are dealing with many other changes in your life. You might wonder if or how your SMA may affect them. For example, you may have questions about how it might affect things like your:

  • education and career choices
  • sport and leisure options
  • travel and learning to drive
  • sex and relationships

You may know that your family gets financial help to cover some of the extra costs of your care and access needs. You might want to know how that will work when you are an adult.

You might find there is one person in your healthcare team you feel really comfortable with who you can start to ask questions. If they do not know the answers they may introduce you to someone from adult healthcare services who does, or put you in contact with other people or organisations.

If you are not already a member you might want to join CHARISMA – our What’s App group for Teenagers. It’s a good place to meet other people going through the same journey.