Our event in Parliament highlighted the challenges faced by the Huntington's community in accessing support, services, and guidance necessary for living the best life possible.

Held on Wednesday, May 10th, 2023, the event centred around new research recently conducted by ourselves, which found that 99% of professionals who support Huntington's disease patients found that they experience mental health issues.

The research also revealed that over half (56%) of patients had been denied access to mental health services due to having Huntington's disease. Even more concerning, of those denied access, 92% of professionals reported that their patients' mental health worsened, with 12% ultimately being admitted to the hospital or reaching crisis point, and an alarming 11% being sectioned.

Every person affected by Huntington's disease has access to mental health services when they experience mental health issues. As the condition has both physical and mental symptoms, limiting patient access to mental health services worsens mental health.

The Huntington's Disease Association is calling for three main actions to address these issues:

  • Access to mental health services  - access to community mental health services when psychiatric symptoms are present
  • NICE guidelines for Huntington's disease, to provide patients, families, carers, and health professionals with a clearer understanding of the care pathway for this complex condition.
  • Having a named care coordinator for Huntington's disease in each area will improve navigating the services required to provide the best quality of care possible. 

These types of services would also enable more support to be provided in the community, encourage more preventive support, and provide a higher quality of care from the outset. Something Integrated Care Systems (ICSs) are posed to focus on achieving. The Huntington's Disease Association believes these actions are crucial to improving the lives of those with Huntington's disease and ensuring that they receive the care and support they need to live their best lives.

At the event

Thanks to everyone who attended the event, the people who spoke, our trustees, all the MPs and more importantly the families of those affected by Huntington's disease.

HDA at parliment

Cath Stanley, Chief Executive of the Huntington's Disease Association, said

"We were delighted that 32 MPs attended the event, a special thanks to Hilary Benn MP who is a Huntington's disease champion in parliament and sponsor of the event. A number of MPs signed pledge cards demonstrating their commitment to the community" 

In summary

The event at Parliament highlighted the significant challenges that the Huntington's community faces in accessing support, services, and guidance. The recent research conducted as part of the Mindful of Huntingons' campaign revealed that access to mental health services is a particular problem, with over half of patients being denied access, leading to worsened mental health outcomes.  We are calling for action to address this issue and ensure that every person affected by Huntington's disease has access to mental health services when they need them. We also want a coordinated, multi-disciplinary health pathway, NICE guidelines, and named care coordinators to provide quality care for those living with the condition. These actions will enable more support to be provided in the community and improve outcomes for those living with Huntington's disease.

The parliamentary event has been partially funded by an independent donation -  Roche Products Ltd. Roche have had no editorial influence over the content.

Here are some pictures taken at the event.