Background Transition is a hot topic as the NHS is failing in helping young people with disabilities transition smoothly from paediatric to adult services. Downs syndrome children are a large population of teenagers requiring this service, (currently 60 000 people in the UK with DS). Disparity exists across regions as to how well this is done. Transition is a vulnerable time for all young people with complex needs. Who holds responsibility currently to keep continuity?
Method An audit was carried out of all the Downs population >14 years in a District General Hospital (DGH) to determine if transition had been discussed in clinic sessions and letters.
Results 47% no record of any discussion (mainly SpR clinics). 9% no records of teenager or e-documents or lost to follow up. 22% transition mentioned and referred to specialty doctors, Cardiology/ENT/Respiratory. 22% discussions were had and the teenager was referred to the GP for ongoing care.
Conclusion Several different quality improvement projects were proposed from simple to more complex.
A ‘Transition alert sticker’ put on the front of notes by clinic staff alerting the doctor that the process of transition needs to be discussed.
A proforma on the inside of the notes to document what has been discussed.
Questionnaires for parents to fill in while waiting in OPD as to the issues they feel are important for them, their understanding of transition, their expectations, what they would like to happen, when. The most helpful way of communicating, helping to manage their future health and well-being (record of yearly appointments, blood results etc.).
As many Downs children, not requiring other specialist services are followed up in GP, a proforma may be helpful for GPs. The GP forum could be used for discussion, as disability qualifies for very few QOF points.
Consideration to developing an App with all the information required by the young person to help facilitate their transition to adult services.
If the proposals worked for the population of Downs children in teenage years then this could be replicated to other children with disability who need smooth transition.
To advocate for a specialist nurse post to be a key person in facilitating transition in all DGHs.
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