Warning after '55% increase in Huntington's disease sufferers'

A charity has warned the number of Scots being diagnosed with a rare brain disease has risen by 55% in three years.

The Scottish Huntington's Association (SHA) said the growth in cases of Huntington's disease is "alarming".

In 2012, there were 709 referrals in Scotland but by last year that had risen to 1,103.

The charity said 5,000 people are potentially at risk and are calling for a national action plan.

Huntington's is an incurable genetic disorder which damages nerve cells in the brain.

The association's national plan is to implement a consistent approach across the country, and meet the needs of the growing number of people affected by the disease.

Huntington's causes changes to muscle control, thinking processes and can cause long-term mental health issues.

The charity said the average age of onset is between 33 and 45 and those living with the condition will require 24-hour care as it progresses into its later stages.

'Truly devastating'

SHA chief executive John Eden said: "The continuing growth in the prevalence of Huntington's disease is alarming.

"In 2012 we had 709 referrals, last year we dealt with 1,103.

"This not only puts a fantastic strain on the limited resources we have for supporting Huntington's disease families, it also means that levels of care across the country for those affected varies considerably.

"We now need a national action plan to address this. People should be able to rely on a certain standard of care no matter where they live."

Each child of someone diagnosed with Huntington's disease is at a 50% risk of developing the condition themselves.

The charity has already brought together representatives from across the NHS and local authorities to identify how improvements can be made.

Consultant psychiatrist Dr Alison Gordon has been closely involved in the development of a more consistent approach to Huntington's disease care in NHS Lanarkshire.

She said: "The impact of the disease on the wider family is truly devastating. It is not just the person initially diagnosed that is affected.

"The development of a national care framework plan will be another important step towards improving the quality of life for families living with this condition."

'Make a difference'

A Scottish government spokesman said: "We are keen to work with the Scottish Huntington's Association to ensure that those living with the condition and their families are able to access the kind of treatment, care and support they need.

"That's why we have, earlier this year, funded a stakeholder meeting, run by the Scottish Huntington's Association, to enable the Huntington's community to determine the priorities and opportunities to make a difference to the lives of people with Huntington's.

"We have received a report of this meeting and we are considering its conclusions carefully.

"We are also providing £110,000 to co-fund a three-year research fellowship in Huntington's disease, along with the SHA and RS MacDonald Charitable Trust, in order to further understanding of the condition and how best to treat it."