Strengthening care: Improving health and social care for people with Huntington's disease.

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People living with Huntington’s disease are often faced with health professionals who don’t understand their condition and how to help. We’re providing training and developing guidelines for health professionals on how to offer effective support.

Expert guidance on Huntington’s disease

Too often, people living with Huntington’s disease are treated by health professionals who don’t understand their condition and how to give them the right support. We’re determined to change this. 

We’re working with expert health professionals to develop guidelines on how to provide effectivesupport to someone living with Huntington’s disease.

These guidelines will cover a range of areas including:

• Cognitive issues

• End of life care

• Mental health

• Movement disorders

• Occupational therapy

• Physiotherapy

• Recognising symptoms and referring for support

• Social work

• Speech and language therapy

• Weight loss and nutrition 

Our goal is to publish these guidelines in 2025 and then to work with the NHS to make sure they’reput into practice.

Coordinated care

Many people struggle with the burden of coordinating their care on top of managing their own condition. We want everyone to have a care coordinator who understands their needs and helps them access services and support.

From July 2021 to January 2022 a co-production project approach took place with stakeholders from Surrey Heartlands Health and Care Partnership, St George’s Hospital, local health and social care professionals, Roche, Huntington's Disease Association, patients, families and carers impacted by Huntington's.

Engagement included surveying patients, families and carers across England and Wales to understand where current care services worked well, and two Surrey-specific co-design events.

Learning from this helped shape a service delivery model for Huntington's disease patients in Surrey, and led to the successful proposal to develop and recruit to a new Huntington's disease coordinator post.

Read more about the project and outcomes

Strengthening care news

Quality Assured scheme

Choosing a care home that meets both current and future care needs is one of the most challenging decisions that people with Huntington's disease, their families and carers may have to make. We want to make choosing a care home more of a positive experience for families affected by Huntington's disease. We hope the scheme will improve choice, and provide people with reassurance that core standards of care will be provided and more information to help them make a decision about the best care home for their needs.

How you can get involved

Join us and help campaign for better support for people affected by Huntington’s disease. When you sign up to be a campaigner, you'll be the first to hear about campaigns the Huntington’s Disease Association is planning and ways you can get involved. Please tick the campaign box below when you fill out the form.