2 May 2012
Conservative Health Minister Simon Burns said that people at any stage in life could be affected by rare diseases, which could range from manageable conditions to debilitating ones.
He explained that the Health and Social Care Act 2012 would mean that specialised services, which were currently provided at both national and regional level through a range of NHS organisations, would be brought together under one roof. Mr Burns added that from April 2013, the new NHS Commissioning Board would directly commission services for people with rare diseases on a national basis.
The proposed operating mode for specialised commissioning linked national service knowledge and expertise with local contract knowledge of providers and pathways of care, said Mr Burns. Mr Burns added that the Government’s commitment to people with rare conditions was demonstrated through its recently published consultation, UK plan for rare diseases.
Bringing the debate, Conservative MP Edward Timpson said there were around 7,000 distinct rare diseases and around five new diseases were described every week in medical literature. Mr Timpson welcomed the Government’s current consultation on the development of a UK strategy for rare diseases, but felt a “nagging doubt” as to whether it met all the challenges faced by those with rare diseases.
Mr Timpson urged ministers to concentrate on six specific areas - diagnosis and screening, better information, research, co-ordination of commissioning and care, access to orphan medicines and implementation and outcomes.
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