Huntington's in Mind was launched at the awareness month theme but is just the start of an ongoing project to campaign for better mental health services for people living with and affected by Huntington's disease.


Please follow the timeline of events since the launch of the mental health awareness campaign, #HuntingtonsInMind.


Vicki, Head of Communications and Marketing said:

"This year we choose the theme of mental health after studying the data from a project funded by Roche, the findings from the study found there was a lack of mental health provision for people with Huntington's disease across England and Wales. We talked to people in the community about mental health and many felt there had been not enough support offered. This led us to the creation of the campaign Huntington's In Mind, the aim of which was to highlight the lack of support for mental health for people in the community. The campaign shared the lived experience of people with Huntington's disease and their families. Their stories were told through film, blogs, and diaries. We wanted the campaign to be a call to action for better access to mental health."

November 2022

A podcast about Huntington's in Mind is launched

During our #HuntingtonsInMind awareness month campaign we made a positive connection with the charity, 'Medics 4 Rare Diseases'. In this podcast, we arranged for Professor Ed Wild to speak with M4RD Founder, Lucy McKay about Huntington's disease, genetics, misconceptions and care pathways. 


October 2022

Hilary Benn MP has agreed to be our champion in parliament for Huntington’s disease

Hilary Benn MP was the main sponsor for the Early Day Motion.

As a champion Hilary will:

  • Table parliamentary questions
  • Introduce us to other MPs
  • Apply for a Westminster Hall debate

September 2022

Cost of living crisis appeal

A letter was sent to Rt. Hon. Kwasi Kwarteng MP, the newly appointed Chancellor in order to highlight how the cost of living crisis will impact people affected by Huntington's disease and also care homes.

August 2022

Two Parliamentary questions were put forward to the Secretary of State for Health and Social Care

Letters stating the lack of neuropsychiatrists with specific training on Huntington's disease and on the actions the Government are taking to improve access to community mental health support for people with Huntington's were put forward to the Secretary for Health and Social Care.

July 2022

Over 80 MPs in the UK have signed the early day motion

After publicising the early day motion across the Huntington's community, many people wrote to their local MP and over 90 have signed.

June 2022

An early day motion was tabled and a draft letter to MPs was formed

After the campaign, members of the Association met with policymakers to submit an early day motion for parliament to request for additional mental health services for people with Huntington's disease. A draft letter was created for members of the community to use in order to write to their local MP. 

May 2022

#HuntingtonsInMind awareness month campaign is launched to highlight the need for better mental health support

In May, the Huntington's Disease Association produced a campaign that aimed to highlight the need for more mental health services for people living with Huntington's disease as well as the carers and other family members that are affected. Using videos they told the story of the impact the disease has on people affected by the disease. The campaign reached over 2-million people through broadcast coverage, 1.8-million through our #HuntingtonsInMind hashtag, over 100-million from print and online coverage and our short films have been watched over 11,000 times and over 300,000 impressions from our social media resulting in nearly 10,000 link clicks to the information on our website.

February 2022

Recruitment for Huntington's Disease Care Coordinator role following the completion of the NHS service model project

Using the survey results, data from the stakeholder meetings and following on from the two workshops that were held (attendees included stakeholders, specialists and family members), this was used to draft a service model and job description for a Care Coordinator. This Care Coordinator role is being piloted in Surrey Heartlands. You can read about the full project here.


July 2021

NHS England launched a survey to understand the standard of care in order to develop a new service model that will pilot in Surrey Heartlands

The standard of care for patients with Huntington’s disease varies across the country and NHS England did not have a service specification or a service model for the delivery of care for patients with Huntington's disease. The survey was filled out by Huntington's patients, families and carers to understand where current services provided by the NHS and social care and care and organisations such as Huntington’s Disease Association to identify themes and opportunities for service redesign.