Rick’s article for Mediaplanet UK’s Rare Diseases Campaign looks to answer the following question:
Patient groups can play a large role in supporting patients living with rare diseases, but why do they not yet play a formal role within the NHS?
Rick highlights the crucial role that patient groups play in the lives of rare patients and their families. He stresses that patient groups need the recognition and resources from the UK health system to continue their vital work.
“Currently, the best sources of support, knowledge and guidance for rare patients are patient groups. These are communities affected by a rare condition. Many share personal experiences of life with a disease. Others drive research or collaborate with clinicians to form dedicated medical guidelines for their condition. Whatever their mission, patient groups act as a hub of knowledge and, more importantly, help patients live with their rare disease.”
Dive deep with two brilliant CEOs to explore the changes they want to see happen!
Rick: There is a fundamental lack of direction in rare disease care. With no dedicated speciality, or even a dedicated generalist clinical specialist, those patients whose rare condition affects multiple systems are passed between clinicians and services with little explanation, communication and often care. Complex cases need focused management, and the current system is only capable of delivering that when exceptional individuals step forward to deliver care outside of the standard operational model. This needs to change.
Our CEO was featured in Rare Revolution Magazine’s Autumn Edition, which focuses on the future of advocacy and support groups. Rick discussed the vital role that patient groups play and why sufficient funding is needed to secure their future.
“The next big step in patient centricity is for those groups collaborating with patient organisations, and benefiting from their expertise, to find innovative ways to support the formation, growth and professionalisation of more rare disease patient groups. There needs to be a funding mechanism that provides seed funds to help these groups take on professional staff without companies exerting undue influence or control over the groups they fund.”