There is a need to improve care for people living with Huntington's disease. We know people’s experiences with care vary depending on where they are in the country.  

This study is closed.

Integrate-HD II is a follow-up to a national survey (Integrate-HD) that ran in England in 2023, which pointed out that people have different experiences of care depending on where they live in England.

The study recruited a total of 24 participants. Nine of these participants were health and social care professionals and 15 were people with a lived experience of Huntington's disease.

We expect to share findings from this study later in the year.

About Integrate-HD II


The survey unveiled important questions in relation to integrated care in Huntington’s disease. This study aims to know more about the characteristics of care models in deemed areas of higher, lower and unknown integration, from the perspective of people living with Huntington’s disease, learning from what works well and what does not work well (and how to address those obstacles).

We want to develop a care model that meets the needs of people living with Huntington's disease in England.   

 

Who took part?

Adults living or caring for people in Hampshire, Shropshire and Warwickshire, Greater London, West Yorkshire, Tyne and Wear that are: 

  • Living with Huntington's disease: someone at risk, gene positive, diagnosed with Huntington's disease, caring for someone, or a former caregiver of someone with Huntington's 
  • Staff caring for people with Huntington's disease: employed by NHS services, local authorities, voluntary sector, private sector, education, etc