Care & Support - Transition
What is Transition?
Transition takes place between the ages of 14-25, and is the time when young people have to make important decisions about their future. Like all teenagers and young adults, those with disabilities will inevitably experience the ups and downs of adolescence; however these experiences may be more problematic than their non-disabled peers, due to additional health problems and the fact that they are often involved with a number of additional support agencies.
As research has shown that transition can be a difficult time, and in order to ensure the young person’s needs are fully met, it is wise to start planning well in advance. Young people may find the decisions they are making about further education, independent living or relationships exciting, but equally they may find the whole experience daunting. The purpose of planning is to guarantee continuity of care, and to ensure that the young person has access to information and support to assist them in making informed decisions. It is imperative to keep the young person and their family at the centre of the planning and to consider their feelings and wishes about throughout the process. Forward thinking will help to reduce feelings of stress and anxiety and will enable the creation of a clear plan to assist all involved in the transition process.
A Collaborative National Transition Plan for 14 to 25 year-olds The development of a number of therapies for the treatment of lysosomal storage disorders (LSDs) like Niemann-Pick disease has led to patients living longer and moving from paediatric to adult services. This transition can be a difficult time for patients. In 2010, the UK Lysosomal Storage Disease Collaborative Group was awarded a three year grant by the Advisory Group for National Specialist Services (AGNSS), the body that manages the Specialist Services for lysosomal storage disorders in England to develop a national transition plan for LSDs. Lindsey Wingate, Advocacy Support Officer for the Society of Mucopolysaccharide Diseases (MPS) was appointed to undertake this project. Here, Lindsey outlines her plans – I am working on a document concerning Transition for young people; a process many face when they leave behind paediatric health services and enter adult health services. This is a joint project with the Lysosomal Storage Disease Collaborative Group who’s members are; Association for Glycogen Storage Disease, The Batten Disease Family Association, The Gauchers Association, The Niemann-Pick Disease Group (UK), The Save Babies Through Screening Foundation UK and the Society for Mucopolysaccharide Diseases (The MPS Society). The aim of the project is to devise a set of Transition guidelines which we hope the Department of Health will adopt and put into practice nationally. I have read copious amounts of legislation regarding the need for proactive transition plans to be created and adhered to. I have contacted every local authority I could find recorded in a governmental list of local authorities asking for any Transition information they could give me. I also contacted many agencies who work with long term medical conditions to ascertain whether they had knowledge, experience or indeed a plan. In all areas I was informed that transition plans are needed! I am currently arranging meetings with medical experts who work with patients with Lysosomal Storage Diseases all over the UK. I have developed a list of ‘open’ questions, and all participants will be asked the same questions to ensure the research is fair and balanced. I am also working on the development of questions for young people with Lysosomal Storage Diseases and their parents and I will speak to individuals who are before, during and after transition. I am really looking forward to learning from these experts as their experiences are going to be really valuable. Once the questions have been finalised I will contact young people in the 14-25 age range and their parents to organise venues throughout England to hold our meetings and conduct the study. It will be an exciting opportunity to shape the future for all young people with lysosomal storage diseases. For further information on this project please contact the NPDG (UK) Central Office by email niemann-pick@zetnet.co.uk or 0191 415 0693. |
Resources and Further Information
Contact a Family has an excellent factsheet which can be downloaded from their website.
Mencap have produced a leaflet ‘Your guide to Transition’ offering advice and information for parents and carers about the transition process. This can be downloaded free of charge from there website.
Progress Magazine is aimed at parent carers and young people.
The Transition Information Network (TIN)
The Transition Information Network (TIN) is a website for parents, carers and people who work with and for disabled young people in transition to adulthood. TIN is an alliance of organisations and individuals who come together with a common aim: to improve the experience of disabled young people's transition to adulthood. TIN is a source of information and good practice for disabled young people, families and professionals. They regularly produce a magazine entitled My Future Choices - this can be downloaded from their website.
Transitions Magazine emerged out of KIDS Young People's Inclusion Network (YP-in) and is aimed at and written by young disabled people. This can be downloaded from their website.
A transition guide, for professionals, funded by the Department for Children, Schools and Families (DCSF) and produced by the Council for Disabled Children with a reference group, has now been published. It is available to download. Hard copies can be obtained from the DCSF's publications department, you can contact them on 0845 60 222 60, textphone 0845 60 555 60 or email at dcsf@prolog.uk.com.