PREPARING to leave school and making decisions that affect adult life are challenging for most young people, and more so for one in three young people with complex epilepsy.
Their smooth and seamless transition to adult services is the subject of today’s Epilepsy Scotland’s Ctrl+T Control Transition campaign.
Epilepsy Scotland chief executive, Lesslie Young, explained: “We know from helpline calls that transition planning is often too little too late for some families. That’s why our campaign calls on local councils to maintain specialist transition services to support families and young people through this complicated process. Various child services already manage the additional support needs of school pupils with difficult epilepsy and learning difficulties. We want the same to happen when young people are ready to transfer to adult care services.
“We believe young adults with difficult epilepsy, and their families, require timely support and information to prepare them for the time when they leave school. They need to fully understand what is available and discuss all the options with various professionals, and then take decisions on what’s next including choices about further education, employment, healthcare, housing money and benefits.
“We are pressing for local councils and NHS boards to work closely together and improve the transition process affecting 7,000 young people with epilepsy in Scotland. Our own website has a list of local help and support across Scotland. MSPs can also support our campaign at tonight’s Scottish Parliament reception.”
Notes to editor
* Photo opportunity on 21 September. Photos will be available at 6.50pm in Committee Room 4 of the Scottish Parliament with guest speaker, chief executive Lesslie Young (Epilepsy Scotland), panel chair and Times journalist Magnus Linklater and the Cabinet Secretary for Health and Wellbeing Nicola Sturgeon MSP. This event is hosted by Dr Richard Simpson MSP, vice-convener of the Cross-Party Group on Epilepsy with support from the Joint Epilepsy Council.
* Epilepsy Scotland works with people affected by epilepsy to ensure that their voice is heard. We campaign for improved healthcare, better information provision and an end to stigma. This common serious neurological condition affects one in 130 people. We represent the 40,000 people with epilepsy, their families and carers. Our freephone Helpline (0808 800 2200) offers advice, support and information. People can text 07786 209501, email firstname.lastname@example.org or visit www.epilepsyscotland.org.uk
* Over 7,000 young people up to the age of 19 have epilepsy in Scotland. Of these, an estimated 1,270 young people with difficult epilepsy aged between 16-19 are likely to be affected by the transition process across all local councils.
* The key aims of our Control Transition campaign are to:
Support families and young people to be as prepared and informed as possible; ensure sufficient and appropriate information is available so timely choices can be made for the young person’s future; signpost the transition help and support available for young adults and their families/carers to give them more control.
Preparing young people for adult life involves making choices and dealing with so many changes, for them and their families. We believe certain things can help people to be more in control of this process: There should be a dedicated transition service with flexibility in decision-making; single point of contact (eg Transition Officer); reinforcement of joint working by council/ NHS teams; timely transition planning; targeted support for those with complex needs; standard format for transition process and information across Scotland; signpost families to other sources of help.
* For details of our campaign leaflet and transition services available in each local council and NHS board log onto www.epilepsyscotland.org.uk
* For more details and case studies (Inverness and Glasgow) please contact: Allana Parker, communications manager, on: 0141 427 4911 or 07884 012 147.
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