Chamber and committees

We are, however, currently seeking NHS boards’ views ona proposal that they should fund 50% of the costs incurred by voluntary organisationsin providing services for those with any form of progressive, incurable disease.

The steering groupresponsible for implementing the recommendations in the review of genetics servicesin Scotland, which was published last September, is currentlyconsidering a proposal, largely developed by the Scottish Huntington’s Association,looking at the health and social care needs of those with single gene (adult onset)complex disability disorders, of which Huntington’s disease is one. The proposalhas two main elements: to develop a strategic approach to the delivery of servicesthrough a national needs assessment and a national assessment of quality of lifeindicators, and the provision of direct support to families living with such disorders,with a focus on providing more support for people in their local communities.

The Scottish Government,through the section 16b of the voluntary grant scheme, is currently committed toa three year funding scheme with the Scottish Huntington’s Association. The totalallocation for the grant is £60,000.

A review of geneticsservices in Scotland was published in September 2006 with a commitmentof an additional £10 million over two years to assist with its implementation. Thiswill lead to improved services for those with any type of genetic condition, includingHuntington’s disease.