Minister praises innovative spina bifida service “helping disabled young people grow”

Natalie Don, Minister for Children, Young People and the Promise visited the Royal Hospital for Children and Young People in Edinburgh on Wednesday to find out more about a project run by NHS Lothian and Spina Bifida Hydrocephalus (SBH) Scotland.

NHS Lothian’s Spina Bifida Transition Clinic, delivered in partnership with SBH Scotland, brings together all the services needed to enable a young person’s transition from paediatric to adult care and facilitate wider support with transition into adulthood. The Transition Clinic is the only fully integrated clinic of its kind for people with spina bifida in Scotland.

The Minister met with young people and families who benefit from the services provided by the Transition Clinic. Also in attendance were Dr Kamath Tallur, Consultant Paediatric Neurologist and the NHS Lothian team, Lawrence Cowan, CEO of SBH Scotland, and Dr Margo Whiteford CBE, Chair of SBH Scotland.

At the Royal Hospital for Children and Young People in Edinburgh, the Minister heard firsthand from Jeanette Smith, whose daughter Lucy Abeels, 16, has spina bifida and hydrocephalus, on the positive impact the Transition Clinic has had. She also heard from Louise Macdiarmid whose son Louis, 14, has spina bifida.

Young people with spina bifida are issued with appointments to the Transition Clinic, where they meet with their clinical specialists to prepare them for their move using the My Transition Plan model, developed with SBH Scotland.

SBH Scotland’s support team are also actively involved in the clinic and work with the young person and their family to put in place wider plans to support their independence, based on their individual goals. SBH Scotland’s role promotes self-management and builds confidence towards wider independence such as support with household activities, accessing educational opportunities, peer support and social outings.

Natalie Don, Minister for Young People, Children, said:

“I very much enjoyed my visit to NHS Lothian’s Spina Bifida Transition Clinic, learning more about the partnership working between the NHS and SBH Scotland and to meet some of the passionate and dedicated team who make this possible.

“I also met some of the young people and their parents who use the Transition Clinic service, and it was very clear to see the important impact this service has had on their experience of transitioning from paediatric to adult healthcare.”

“The Transition Clinic is a strong example of the benefits of joint working between the NHS and charities to provide valuable support to young people.”

Lawrence Cowan, CEO of SBH Scotland, said:

“It was great to introduce the Minister to our innovative Spina Bifida Transition Clinic. It’s a brilliant example of joint working between NHS and SBH Scotland to provide support that disabled young people need all in one place.

“We want to see these clinics expand right across the country. We welcome the chance to make the case to the Minister for growth of this service to form part of the Scottish Government’s National Transitions to Adulthood Strategy for Disabled Young People.

“Our mission is to make sure young people with spina bifida feel unstoppable. The work of the clinic has not only helped young people to cope with changes in health care but has also supported people to achieve greater independence. It helps them to grow as people – not just patients.

“We believe that continuing to fund the clinic and expanding the model throughout the country should be a priority so more young people living with spina bifida can reap the benefits of this specialised service.”

Jeanette Smith, whose daughter Lucy attends the Transition Clinic, said:

“Lucy’s been a patient at the hospital since the day she was born, so that’s 16 years of being cared for by the same team. The thought of moving on to adult services is really daunting, a whole new care team becoming involved and a feeling of starting from the beginning again, not knowing what to expect and only ever really hearing stories about how different adult services are to what we are used to in children’s services.

“The transition clinic offers a valuable link between children’s and adults services for parents and their young adults. Meeting new doctors and nursing teams, whilst still having familiar faces there provides reassurance and eases the feelings of uncertainty around the process.”

SBH Scotland hopes to expand the Transition Clinic model and reach more young people across the country. This integrated and innovative approach ensures that young people with disabilities have the best support to navigate the challenges that come with moving from the paediatric to the adult healthcare systems while also receiving support to achieve their ambitions in life.

The success of the project and of the partnership working between NHS Lothian and SBH Scotland can hopefully be replicated throughout Scotland.

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