Charity calls for national framework to support growing number of those diagnosed with Huntington's disease
The growth in the number of people being diagnosed with Huntington's disease is “alarming”, the only national charity that supports people with the genetic condition has warned.
Figures released by the Scottish Huntington's Association (SHA) show that it dealt with a 55% increase in referrals over the past two years.
SHA, which has nine specialist support teams around the country to provide families with information and support, is now calling for the Scottish Government to create a new national care framework for the disease so that patients are treated consistently across the country.
John Eden, chief executive of SHA, said: “The continuing growth in the prevalence of Huntington's disease is alarming.
“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 Huntington's disease families, it also means that levels of care across the country for those affected varies considerably.
The continuing growth in the prevalence of Huntington's disease is alarming
“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.
“By developing a new approach to delivering care we could dramatically improve the way the growing number of families living with Huntington's disease are supported.”
Huntington's disease is an incurable hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues.
It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.
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.
In response to the rise in numbers, SHA brought together representatives from NHS trusts, social care partnerships and local authorities to see how Huntington's disease care can be improved through a national framework.
Dr Alison Gordon, a consultant psychiatrist at NHS Lanarkshire, said: “The impact of Huntington's disease 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.”
