Registered cases of the degenerative brain disorder Huntington’s Disease (HD) have more than doubled in Lanarkshire since 2009 leading to the development of a new care package.
The number of cases being supported by the Scottish Huntington Association (SHA) has risen from 48 three years ago to 125 in 2012.
In response to this, SHA in partnership with NHS Lanarkshire, South and North Lanarkshire Councils has developed a new Care Pathway to improve the way families living with HD are supported.
The new approach will eventually be rolled out across Scotland.
SHA chief executive John Eden said: “The aim of the Care Pathway programme is to give guidance and advice to the range of healthcare professionals involved in caring for families affected by HD.
“This will ensure clear guidelines of best practice ensuring everyone can expect the same standard and quality of support while retaining the flexibility to adapt to each family’s individual needs.”
HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and may cause long-term mental health issues - there is currently no cure.
An estimated 1,100 people in Scotland are living with the condition, but as many as 5,000 could be potentially at risk,
Each child of someone diagnosed with HD is at 50 per cent risk of developing the condition themselves
NHS Lanrkshire clinical psychiatrist Dr Alison Gordon was closely involved in the development of the project.
She said: “The impact of HD on the wider family is truly devastating and 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.
“This Care Pathway is another step towards improving the quality of life for families living with this condition.”