Rare Disease UK (RDUK) is today launching a report Rare disease care coordination: delivering value, improving services at a parliamentary reception in Westminster, that shows that the provision of care coordinators for people with rare diseases is not only good for the patients but offers value for money for health providers.
The launch of the report has been timed to coincide with international Rare Disease Day which this year takes place on the 28th February. Rare diseases affect 3.5 million people in the UK (1 in 17).
RDUK’s report shows that just 13% of patients with rare diseases have access to someone to fulfil the care coordinator role.
This figure compares, for example, to 87% of people with cancer who are given the name of a clinical nurse specialist, whose role includes coordination.
At RDUK we often hear that patients and families have nobody to coordinate the multiple elements of care and treatment that their condition needs. This can mean that they do not receive the information and support that they need, that they have to tell their story over and over to health professionals, or that they feel lost in the healthcare system.
RDUK has found strong evidence that care coordinators represent value for money by saving consultants and GP’s time, reducing hospital admissions and reducing the length of hospital stays. Having a care coordinator in post improves the quality of care patients receive.
The Chair of Rare Disease UK, Alastair Kent OBE said: “All too often patients with rare diseases are left to find information about their condition on
their own with no support or guidance from health professionals. Our research shows how cost effective to the NHS Care Coordinators are, and how they can truly improve the quality of life for patients and families. It is vital that our findings are taken into consideration when planning and managing services for those affected by rare diseases because without Care
Coordinators the evidence suggests a less than satisfactory outcome for everyone.”
The full report can be downloaded here