The UK's first ever plan on rare diseases has been published for consultation by the Department of Health with the aim of enabling earlier diagnosis of and better care for those with rare conditions. A rare disease is one that affects fewer than five in 10,000 of the population.
The consultation document recommended using specialist centres to make exact diagnoses, with the aim of making sure people are treated earlier, which in some cases could save lives. It also said that all doctors should have the right training to be aware of the possibility of a rare disease.
The document urged that the care of patients with rare diseases should be better co-ordinated so that, for example, people so not have to make multiple visits to such specialists as dermatologists, dieticians, chiropodists, dentists and so on. This would save patients time, money and hassle.
Alastair Kent, chair of Rare Disease UK, commented: "Patients affected by rare diseases and their families will be pleased to see recognition of their needs for high quality healthcare being addressed in a systematic framework. A UK rare disease plan offers the opportunity to ensure a timely response by the NHS to patients' needs, and to ensure the effective integration of services and the use of scarce knowledge and resources while creating a framework for sustained research and development of innovative solutions to long standing needs."
The health minister Lord Howe said: "The UK has a good story to tell about supporting and treating people with rare diseases. But we know the challenges people face and that there is always room for improvement.
"This is the first time the UK has had a coherent set of proposals on rare diseases which outlines how we can build on our strengths through improved co-ordination of services, stronger research and better engagement with patients and their families. These proposals will benefit patients and help the NHS to be more efficient and co-ordinated, as well as save money."
source: publicservice
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