Evidence indicates that many young people are lost to follow up when transferred to an adult system, can become disengaged and have sub-optimal health and life outcomes when not cared for in an holistic way. The NCEPOD report “The inbetweeners” 2023 highlighted significant disparity in services as well as barriers and facilitators for young people receiving a good transition to adult healthcare services.
There is ample literature on the benefits of dedicated clinics and young people friendly services supported by national standards and guidance, NICE guideline NG43, NICE Quality standard QS140, Care Quality Commission CQC Transition arrangements for young people with complex health needs: however, this heightened profile is yet to translate into practice with significant variation across services in the NW. More joined up work is needed to streamline care, address specific needs and psychosocial health across kidney services in the North West.
- To set up a multi-disciplinary team network of collaboration among paediatric and adult renal services in the NW.
- Address variation between centres to enable more streamlined and consistent transition and young adult care by developing a guideline for transition.
- To be innovative and look at education support which is not routinely addressed.
- Develop a NW Pathway/guideline for transition and roll this out across the region.
- To create an educational package for teachers to support pupils with chronic kidney disease
- Data has been collected from seven kidney centres and showed significant variation in all parameters across all services in the region.
- The team formed a stakeholder group and reviewed existing standards and policies and have now developed a new NW guideline
- NW guideline is now in the process of dissemination across the NW.
- To support teachers across the region, the group have developed several educational videos.
The team have worked hard to develop a NW approach to transition for patients who suffer with kidney failure.
