Often rare diseases are chronic and life-threatening, and have an enormous impact on the lives of patients and their families. Most rare diseases affect multiple parts of the body – such conditions are known as ‘multisystem’. People with these conditions require complex care from a range of different health professionals.
However, many people with rare diseases tell Rare Disease UK (RDUK) that the care and treatment that they receive is poorly coordinated, which has a detrimental impact on their care and the lives of their families. RDUK believes that every patient with a rare disease should therefore have access to a named care coordinator. A care coordinator is a trained professional who is responsible for ensuring that a care plan is in place and carried out. They can greatly assist in ensuring coordination and continuity of care, so that care is provided as smoothly as possible for the patients they support. Care coordinators are also available to support the practical and emotional needs of patients, families or carers throughout the progression of the condition. They may also provide vital education to other professionals, to enable appropriate care and support to be provided. Care coordinators may also be known by other job titles, such as care advisors or key workers, or a specialist nurse may fulfil the role. In a UK-wide survey of the experiences of patients and families with rare diseases conducted by RDUK, one fifth (21%) of respondents said that the role of care coordinator should be fulfilled by a specialist nurse. However, the lack of an overwhelming preference suggests that as long as there is someone available to centrally coordinate care, patients and families do not mind who it is, as long as the professional has sufficient knowledge of the condition and the situation. What is crucial is that a sufficient number of care coordinator posts are created, in whatever capacity works best to meet the needs of patients and families affected by rare diseases.