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Chamber and committees

Question reference: S6W-12565

  • Asked by: Gillian Mackay, MSP for Central Scotland, Scottish Green Party
  • Date lodged: 25 November 2022
  • Current status: Answered by Maree Todd on 7 December 2022


To ask the Scottish Government, further to the answer to question S6W-07643 by Maree Todd on 25 April 2022, when the meeting between its officials and the Scottish Huntington’s Association took place; what its officials understood “the need for further provisions and service development” for Huntington’s disease to be as a result of this meeting, and what it has done since the meeting to bring about these changes in order to improve services for Huntington’s disease families in Scotland.


Officials met with the Scottish Huntington’s Association (SHA) on 16 May 2022 and discussed the excellent services offered by the charity and ongoing work to secure HD specialists for four further health board areas.

Since then we have progressed our work in commissioning Healthcare Improvement Scotland (HIS) to support quality assurance of the implementation of the HIS General Standards for Neurological Care and Support. A self-assessment template and guidance is being developed, supporting service-led self-evaluation of neurological services.

We welcome the engagement and expertise of third sector organisations including the Neurological Alliance of Scotland (NAoS) and the SHA and support their involvement and leadership in the development and implementation of this key activity.

Undertaking this work will identify areas of improvement across NHS Scotland and help to drive forward better standards of care for people with neurological conditions, including Huntington’s Disease.

We are also undertaking work to better understand specialist service provision for people in Scotland with neurological conditions, including Huntington’s Disease and the specialist provision provided by SHA and the NHS, with the aim of developing improvement. We have invited representation from NAoS and welcome input from SHA and other condition specific organisations to inform this.

This process will also align with relevant commitments from the Neurological Framework, Transforming Roles agenda and the National Workforce Strategy.