So I’m preaching to the converted, I know, but teenagers really do matter, and families often say they face the cliff edge when it comes to transitioning across to adult services.
This is never more so than when you have a complex physical disability from childhood, and you have a severe learning disability (LD) and your parents have had to fight for every fragment of service that you and they receive to keep you bumping along on your own tricky path.
Then lo-and-behold you scrape it to your late teens and suddenly all that you’ve fought for gets thrown back into the melting pot with a “you’ll get reassessed when you hit Adult services”!
This is the dread of all these parents, who then also face the huge uncertainties of the parental role in a world of new rules and legal rights and “over 18 and so best interests decision making”.
So, here in Sunny Sunderland where life is canny but the London NHS politicians have forgotten us all, Dr Karen Horridge has been working hard to address these challenges facing families and how to “transition” them from her all-encompassing Paediatric Neurology clinic support to the big world of adult life.
For some time, the Adult Palliative Care team under Dr Lisa Baker at the local St Benedict’s Hospice have been working in close partnership with the NTW (Northumberland, Tyne and wear) Learning Disabilities team led by Ashley Murphy and Lyndsay Stephenson, to identify and support adult patients of all ages with Learning Disabilities (LD) who develop palliative care needs in a partnership pathway. This includes regular MDT’s and regular holistic needs assessments as well as wish lists and end-of-life care plans entitled My End of life Booklet.
Now under the TEEN (Transition; Each and Every Need) Matters project, Dr Horridge is identifying each child’s needs according to a complexity score/app which takes into account multiple technologies, complex medical symptom managements and educational support needs.
From there the top tier of teenagers with multiple complex and palliative needs are identified (up to five per year) and transitioned in a shared pathway with the St Benedict’s palliative care consultants and LD team with overlap in the handover process.
The vast majority of teenagers will be identified and handed on to the Enhanced GP-led LD service with annual checks, and service sign posting as required, but with the LD team overseeing this pathway.
The middle tier of up to 20 teenagers a year will require more input and support from the Neuro-rehabilitation team with the LD team leading and coordinating the process.
A healthy respect and partnership working style in this whole process plus regular communication is the key to the success of TEENs Matter. Now that there has been a recent merger across the two large foundation trust organisations in Sunderland, we have become a virtual organisation in theory and this should enable us to keep communication tight within our three teams and hopefully not let anyone slip over the cliff face.
Dr Ellie Bond is working with partners across South Tyneside and Sunderland NHS Foundation Trust to make sure the transition needs of young people receiving palliative care are not forgotten. TEEN Matters is one of ten projects funded through the Improving Transitions for Young People Fund. If you would like to find out more about our work supporting children make the transition into adult services, do email firstname.lastname@example.org.