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Neuromuscular service transition pathway
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Neuromuscular service transition pathway
What is a pathway?
This resource will help to explain your transition from the Sheffield Children’s NHS Foundation Trust paediatric Neuromuscular Service into the adult Neuromuscular Service at Sheffield Teaching Hospitals NHS Foundation Trust.
Getting ready
Around ages 14 to 16 (between school years 9 to 11).
What happens?
- Your neuromuscular consultant will talk through the idea of your health care transition and what this word ‘transition’ means for you and your family.
- Your neuromuscular therapy care will continue to be provided through Sheffield Children’s NHS Foundation Trust.
- Your neuromuscular therapy team will ask for your consent to refer to other services.
- We may refer you to the Sheffield Children’s Complex Transition Team if there are lots of health professionals supporting you.
Almost there
Around ages 16 to 18 (around year 11 of school).
What happens?
- At your next neuromuscular clinic appointment with your consultant they will talk through the transition clinic with you, what it will look like, who will be present and its purpose.
- You will be given every opportunity to ask questions around your health condition.
- The paediatric neuromuscular therapy team will continue to work with you.
- You can ask any questions about adult services and where you might get support from.
- A transition letter from the neuromuscular therapy team prior to clinic will be posted to you. You will be given our transition resource about moving into adult care, a leaflet by MDUK transition, and a resource about careers and work for disabled people by Disability Rights UK.
- Your paediatric NMCA (Neuromuscular Care Advisor) will write a summary for the adult NMCA which will include brief details if their involvement in your paediatric care.
- There are 4 transition clinics a year. They are usually held at Ryegate Children’s Centre. In attendance will be your neuromuscular consultant, and paediatric physiotherapist, and the adult team including a consultant, physiotherapist, NMCA and perhaps specialist nurse.
Ready to go
Around ages 16 to 18 (around year 12 of school).
What happens?
- At your transition clinic you and your parents and carers will be introduced to the adult team.
- Now is a good time to ask any questions about the adult Neuromuscular Service and associated health care.
- At the transition clinic you will receive a pack of information from the adult health care NMCA.
- Following the transition clinic you will receive a letter from your paediatric neuromuscular consultant that you are no longer under the care of Sheffield Children’s NHS Foundation trust with identification of you adult heath care provision.
After being discharged from Sheffield Children’s
You and your family will be in charge of managing your therapy care. When you have a problem that you think you need physiotherapy or occupational therapy for, you will need to contact the adult team and refer yourself to them.
Should you need assistance from the adult NMCA, you will need to contact them and request support.
Further resources
Disability Rights UK for information on welfare and rights, employment, further education covering all areas of daily life.
Scope for information on practical support on all matters. Free helpline on 0808 800 3333.
Young Minds for information around mental health and supporting others.
Living Made Easy for information on equipment around all aspects of daily living.
Is something missing from this resource that you think should be included? Please let us know
Disclaimer
Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.
Resource Type: Article
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