The number of people in Scotland living with an incurable degenerative brain disorder is on the rise according to latest figures released by the Scottish Huntington’s Association (SHA).

The SHA, the only charity in the country that supports people with the genetic condition Huntington’s disease (HD), is calling for a national action plan to bring consistency to levels of care being offered to meet the needs of the growing number of people impacted by the condition.

The number of referrals the SHA are now dealing with has increased by 55% since 2012.

“The continuing growth in the prevalence of HD is alarming,” said SHA chief executive John Eden. “In 2012 we had 709 referrals, last year we dealt with 1103 this not only puts a fantastic strain on the limited resources we have for supporting HD 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.”

In response to this rise in numbers SHA brought together representatives from NHS trusts, social care partnerships and local authorities to see how HD care can be improved through a national framework.

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. 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. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.

It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.

“By developing a new approach to delivering care we could dramatically improve the way the growing number of families living with HD are supported,” added John.

The new approach to developing an HD care framework was widely welcomed by care professionals. Consultant psychiatrist Dr Alison Gordon has been closely involved in the development of a more consistent approach to HD care in NHS Lanarkshire.

“The impact of HD on the wider family is truly devastating. It is not just the person initially diagnosed that is affected. Within the wider family diagnosis can impact on a whole variety of life choices for those potentially at risk. 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,” she said.

The plans for a new HD national care framework will now be considered by the Scottish Government.