A step in the right direction with a briefing paper being developed for NICE Guidelines for Huntington’s disease.



It was confirmed in the House of Lords that the Department of Health and Social Care is preparing a paper on potential NICE guidelines for Huntington’s disease.

The Huntington Disease Association have been asked to contribute to this briefing paper for the guidelines. The National Institute for Health and Care Excellence (NICE) is the independent body that develops authoritative evidence-based guidance for the National Health Service on best practice. The development of these guidelines would benefit anyone impacted by Huntington’s disease.


NICE guidelines can help:

  • understand what good care or support looks like, so that you can feel confident in the care or support you are receiving
  • ask questions about your care or support based on what you have a right to expect  
  • understand your choices and take part in decisions about your care
  • know how to seek support as a carer
  • play a part in improving your health and wellbeing

Cath Stanley Chief Executive of the Huntington’s Disease Association said:


“One of our requests to the government has been about the development of NICE guidelines for Huntington’s disease, thanks to the Westminster Hall debate and Hilary Benn MP support this looks like this may be finally starting to happen.”

This is a transcript of the House of Lords questions:


The Rt Hon. the Lord Hunt of Kings Heath OBE (Labour - HL5255)
To ask His Majesty's Government what plans they have, if any, to develop specific national guidelines about Huntington's disease to ensure patients with the disease have a clear, consistent and coordinated care pathway.

The Lord Markham CBE (Conservative)
The National Institute for Health and Care Excellence (NICE) is the independent body that develops authoritative evidence-based guidance for the National Health Service on best practice. Topics for guideline development are identified and prioritised through a topic selection process that considers the evidence base, variation in practice and burden of disease.

Following the Westminster Hall debate on Huntington's Disease on 9 November 2022, Helen Whately, State Minister for Social Care is making these representations to prepare an evidence-based paper on a potential guideline on Huntington's Disease for consideration through the NICE topic selection process.