The UK Strategy for Rare Diseases contains 51 commitments to ensure that health and social care systems across the four nations provide those living with rare conditions with the highest possible quality of evidence based care and treatment. There are, however, few provisions for patients with a rare condition who at some point in their lives will need to transition between care providers.
Advances in science and medicine have led to better health outcomes for patients living with a rare condition. Patients who previously would not have survived childhood are now living on into adulthood, a fact that should be celebrated. Better treatments mean that patients affected by rare diseases will be requiring a transition plan for the first time and the challenge now will be for healthcare systems in the four nations to develop age appropriate services for these patients.
In light of this, Rare Disease UK (RDUK) undertook a study to gain a better understanding of the issues faced by patients transitioning both from child to adult care and from adult to older age care. During the summer we spoke to patients affected by rare conditions and their families from across the UK about their experiences of transition between care providers. This included patients and families with experience of transition between paediatric and adult services, as well as a small number of patients who have experienced transition from adult into older age care and also from older age into end of life care.
Key findings of the report include:
- Good communication and coordination are essential for successful transition.
- Patients and families feel disconnected from the transition process.
- Age-appropriate services are not always available to patients.
- Medical professionals receive insufficient training in adolescent care and medicine.
- Transition can come as a shock to patients and be too sudden.
- Parents feel anxious and unsupported during transition.
- A patient’s individual circumstances are not always considered during transition.
- Transition is better for those affected by more common conditions.
Our findings show that the NHS is capable of providing a world-class service to families affected by rare conditions, and that many patients are happy with the support they receive. The clinicians we spoke to are not just pioneers in the UK but also the world. Unfortunately, this high quality care is not universal to all patients with rare conditions going through transition within the NHS. This report is a call to action for the NHS and for all those other agencies involved in transition, public, private and voluntary, to work alongside patients and their families in order to make transition as smooth and purposeful as possible. The need for high quality care for patients during transition is greater than ever and the demand will only continue to increase as new treatments for currently intractable conditions are found.