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First Huntington's disease care qualification launched

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First Huntington's disease care qualification launched
Scottish Huntington's Association chief executive John Eden and Senior Lecturer Dr Louise McCabe formally launch the new qualification.

The University of Stirling will host the UK’s first degree level module for those supporting people living with Huntington's disease (HD).

Devised by the Scottish Huntington's Association (SHA) in collaboration with Stirling’s School of Applied Social Science, the module entitled 'HD: An enabling approach to supporting families' will be available as a continuous professional development qualification.

It will be aimed at health and social care staff from all sectors and disciplines, family members of people with HD and others with an interest in learning more about the condition.

John Eden, SHA’s chief executive said: “Very few diseases require the support of so many health and social care professionals. During the course of the disease someone living with Huntington's will require the expertise of physio, speech and occupational therapists, GPs, social workers and psychiatrists to name but a few.

“When health and social care staff encounter someone living with HD for the first time they frequently identify a need for training and education because it is not a condition which many professionals will have much experience or understanding of.

“This new qualification will address this head on dramatically improving the way those working with HD families can relate to those people living with the condition.”

HD is a progressive condition that causes changes to muscle control, thinking processes and may 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. It is also hereditary; each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.

The 200 hour module will be delivered over 12 weeks on a part time basis.  It will utilise a blended learning approach with two study days held at the Dementia Services Development Centre, University of Stirling, followed by 11 weeks of online learning.

The teaching team is being led by Dr Louise McCabe, senior lecturer in Dementia Studies.

She said: “This is a unique opportunity for us to work closely with an organisation such as SHA who bring a wealth of expertise about HD and a valuable network of families and professionals who will contribute to the module”

The first course will run from September and enquires should be made to Gillian Hardisty, at or phone 01786 467746.

Notes for editors
Background information
  • Scottish Huntington’s Association (SHA) is a Scottish charity established by families living with Huntington’s disease (HD) in the late 1980s in response to a lack of support services
  • There are now nine specialist HD support teams around the country providing families with information and advice about all aspects of the disease, able to assess support needs and coordinate the care they need.
  • Children of people diagnosed with HD have themselves 50/50 chance of developing the condition and the Association also has three specialist youth advisors to counsel those potentially living with the disease. 
  • SHA also supports a network of family branches which are run by family members for family members and provide information and peer support

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