Texte intégral - Full text
Contents
Foreword
Acknowledgements
Introduction
About muscle disease
Definitions of transition
Young peoples’ perspective
1. Young peoples’ experiences and recommendations
2. Becoming a man: Life with Duchenne muscular dystrophy
For professionals
3. Transition between health, education and care services
4. Models of transition explained
5. Legislation and guidance
Guidance for everyone
Funding
6. State benefits
7. Disabled Facility Grants
8. Charitable grants
9. Raising funds for a young person
Lifestyle
10. Daily living
11. Diet and nutrition
12. Exercise
13. Holidays
14. Living independently
Medical
15. Medical follow-up
16. Hospital admissions
17. Emergency situations
18. Genetic issues and pregnancy
Practical
19. Overview of services
20. Record keeping
21. Mobility
22. Further education
23. Housing options
24. Employment
Social support and relationships
25. Social care
26. Emotional support
27. Peer support programmes
28. Sex and relationships
ISBN 978-0-9565382-0-8
Guide to Transition for 13-25 Year Olds with Muscle Disease
Published April 2010 Edition 1
Guide to transition
Foreword
The Muscular Dystrophy Campaign is delighted to provide you with this groundbreaking guide to
transition to adulthood.
Whether you are a young adult living with muscle disease, a parent or professional involved in their
care, we hope that you find the guide helpful in advising you further about the services, entitlements
and places to go for further information and support.
This publication has been produced as part of the Muscular Dystrophy Campaign’s ongoing
commitment to providing free and expert information to all those affected by muscle disease.
Our thanks go to Bupa Giving for its support in funding this important project, and to the large
number of individuals with muscle disease, their families and the professionals who gave their time
and expertise to help make this project a success.
Philip Butcher
Chief Executive
Muscular Dystrophy Campaign
Acknowledgements
This guide was developed with expert input from a wide range of professionals and individuals.
Our thanks to all those who contributed to the project, including:
Louise Hastings, Neuromuscular genetic nurse counsellor
Philippa Farrant, Duchenne Family Support Group
David Abbott, Norah Fry Research Centre
Professor John Carpenter, University of Bristol
Craig McClean, young man with Duchenne
Liam McClean, young man with Duchenne
Cath Thompson, Tý Hafan
And to the Muscular Dystrophy Campaign care and support staff:
Lyn Inman, Director of Care and Support
Emma Mowat, Head of Support Services
Edwina Perkins (Project Manager)
Julie Cassell
Martin Chainani
Tamsin Coade
Sue Manning
Sue Gallagher
Gill O’Neill
Alison Brown
Shirley Crosby
Jan Smith
Jane Stein
Wilma Stewart
Guide to transition
Introduction
This guide to transition services is aimed at young people aged 13-25 affected by muscle disease,
their families and the professionals involved in their care. It provides advice about services and
entitlements and signposts where to go for further information and support.
The guide is divided into three sections:
1. Young peoples’ perspective – feedback and recommendations from young people with muscle
disease on their experiences of becoming an adult.
2. For professionals – transition between health, education and care services, models of transition and
details of useful legislation and guidance.
3. General guidance for everyone – this section is divided into key areas which include funding,
lifestyle, medical, practical, social support and relationships.
We would like to update you with any new information and factsheets as they are produced, and
welcome your feedback on this pack along with any suggestions which you may have for new
materials.
To help us keep in touch and update you with news, updates and information on events which may be
of interest to you, please ensure that you have given us permission to store your contact details on our
secure database.
Should you have any further questions or concerns, please do not hesitate to contact our Information
Service:
0800 652 6352 (freephone)
info@muscular-dystrophy.org
www.muscular-dystrophy.org
Emma Mowat
Head of Support Services
Muscular Dystrophy Campaign
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