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Tuesday 25th June 2019

Scottish Huntington’s Association targets health professionals during 24th annual Awareness Week

8th June 2012

The Scottish Huntington’s Association (SHA) has called for medical professionals to better understand Huntington’s Disease, a debilitating neurological condition which affects 900 families in Scotland.

As part of its 24th annual Awareness Week, which runs from Monday 11 to Friday 15 June 2012, the charity is targeting health workers across Scotland with information about the condition, what the symptoms are, how it progresses, support that is available and where they can access expert information.

Some 200 Scots social workers, GPs, nurses, day care employees, psychologists, psychiatrists and residential staff will take part in seven training sessions being organised next week throughout Scotland, which also include a ‚ÄėRaising the Standard‚Äô event at the Carnegie Conference Centre in Dumfermline on June 14.

Launching the 2012 Awareness Week, Scottish Huntington’s Association CEO John Eden, said: “This is the biggest training exercise the SHA has ever organised, not only because it covers all of Scotland but because it encompasses every discipline within the medical health profession.

‚ÄúIt is vital that GPs, nurses, psychiatrists, health visitors, residential workers and every one else who works in healthcare knows exactly what Huntington‚Äôs Disease is, how it affects people and their families and how to best help them access the right support.‚ÄĚ

He added: ‚ÄúThere are literally hundreds of families affected by Huntington‚Äôs Disease in Scotland and yet it is still so heavily misunderstood. Medical professionals can make such a difference to a family‚Äôs experience of HD therefore it is extremely important they are well informed.‚ÄĚ

SHA is the only Scottish charity dedicated to helping people and their families live with the condition. They fund nine specialist services around Scotland ‚Äď Glasgow, Lothian, Lanarkshire, Ayrshire, Highland, Grampian, Tayside, Fife and Angus ‚Äď where people can access help and advice about Huntington‚Äôs Disease.

SHA services are funded through partnership with the NHS and local authorities, but with pressures on public spending, the SHA must find £300,000 each year to keep its group of dedicated nurses delivering day-to-day support to families living with Huntington's Disease.

Between 4000 and 6000 individuals in Scotland are thought to be at high risk of developing symptoms in the future. Everyone with the HD gene has a 50% chance of passing it on to their children.

John Eden said: “Although Huntington's Disease is every bit as devastating as other severe neurological conditions, it is largely unknown and is shrouded in fear and stigma. Families can be reluctant to talk about it because the genetic risk has many implications for their children, jobs and long-term financial security.

‚ÄúThis often means that even medical professionals find it difficult to give patients informed advice, making our service even more vital. We have worked with people who have Huntington‚Äôs Disease every day since 1989, giving us an unrivalled knowledge of the support which is available from local councils, NHS services and other organisations.‚ÄĚ

Although SHA receives funding from a variety of sources, including various health boards, much of their work is reliant on fund raising and donations from the public

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