The Queen’s Nursing Institute is undertaking a two-year project, funded by the Burdett Trust for Nursing, which looks at how we can enable community nurses to support young people with long term conditions, who have transitioned from children’s services to adult community services.
We are now 7 months into the transition project work and I have entered a world of inspirational young people and their families/carers. I have also met many enthusiastic and supportive clinicians who wish to be part of our work and make a difference.
During the summer months we have travelled around the country delivering focus groups to find out how transition works in the field. All groups have included enthusiastic clinicians from all specialities (including District Nurses, School Nurses, General Practice Nurses, Educators) and who are all passionate and willing to support effective transition. I have been accompanied by 21-year-old, Hannah Phillips whom I met at a Transition conference in London at the start of the project.
At 6 months old Hannah caught meningitis and was later diagnosed with an incurable heart disease called Complicated Ebstein’s Anomaly. Hannah has spent a lot of time in and out of hospital and had various surgeries and treatments. This will carry on for the rest of her life.
Hannah talks about her experiences of her transition journey as she has moved from children’s services into a world of adult healthcare services. Her story doesn’t make comfortable listening and that is why a robust transitional service is so important- We have left every group with clinicians saying “we have to do better for young people like Hannah” - So that is our plan.
“The transition process (moving from children to adult care) wasn’t an easy one for me. As I’ve grown older within the healthcare system, I’ve realised how the profile of young patients can be non-existent in healthcare services. All of a sudden we go from playrooms and schools, to big white rooms and restricted visiting hours.
It was my transition experience that fuelled me with energy to make change. I wanted young patients’ voices to be heard and what’s more, I didn’t want any other young patient to go through what I did.
‘Touring’ with The QNI during this project has been such an eye-opening experience. Whilst it’s been a real pleasure to share my story and provide nurses with a deeper understanding of what it’s like from a patient’s perspective, the richness for me has come from those who have participated. Nurses from all backgrounds and experience, who recognise the problems, and who are passionate about seeing change attended the events.’”
– Hannah Phillips
Our next area of project work is to write a learning resource that will be free to access on the QNI website from early next year.
We are aware that there are some very good areas of transition practice going on and we are planning to find out more about these areas of work during the second half of the project. The successful examples of transition appear to be where clinicians across all disciplines are working closely together to improve transition services for young people and their families.
Dr Candice Pellett OBE, District Nurse, Queen’s Nurse, QNI Transition Project Manager