Dan Jarvis – 2015 Parliamentary Question to the Department of Health

The below Parliamentary question was asked by Dan Jarvis on 2015-10-27.

To ask the Secretary of State for Health, what plans his Department has on (a) raising awareness of severe and complex disabilities suspected of having a genetic syndrome for which it is not currently possible to confirm a diagnosis and (b) helping to ensure that patients and their families that are affected by such disabilities have access to appropriate care and support.

George Freeman

The Department is committed to improving the diagnosis and treatment of rare diseases, including those severe and complex conditions caused by genetic disorders, through implementation of the UK Strategy for Rare Diseases, published in November 2013. The UK strategy includes specific recommendations to improve awareness amongst service providers and others of the effects that rare diseases can have on a person’s education, family, social relationships and ability to work. There is also a specific recommendation to improve education and awareness across the healthcare professions and to improve the co-ordination of care, recognising that some patients have complex needs and require expertise from a number of specialists and carers.

The UK Rare Disease Forum will monitor progress against the recommendations in the strategy and is due to produce its first report in early 2016.