We've taken our campaign to Downing Street

We have delivered a letter to the Prime Minister at 10 Downing Street, calling for better care and support for people living with Huntington's disease.

The letter was signed by 1,555 people. It was written by our Chief Executive, Cath Stanley BEM, and sets out five priorities for the thousands of people affected across England and Wales.

We're calling for:

• Care coordination. Everyone living with Huntington's disease should have a single point of contact, such as a nurse or social worker. Families shouldn't have to coordinate complex care alone.
• Better mental health services. People tell us they have to reach crisis point before they get help. When they do, services often don't understand Huntington's disease.
• A fairer benefits system. Some people receiving the highest level of Personal Independence Payment (PIP) still face pointless, anxiety-provoking reassessments. We want these to end for people with progressive, life-limiting conditions.
• Knowledge of Huntington's disease across health and care services. More than six in 10 people (62%) told us they had to explain the disease to a healthcare professional in the last year. We want to work with the Government and NHS to give professionals the support they need.
• Access to new treatments. Research is making progress. Everyone affected by Huntington's disease must be able to access any new and effective treatment.

Sharon, one of our ambassadors who joined us at Downing Street said,

"It was great to visit Downing Street and hand in the letter. I've cared, and still care, for family members affected by Huntington's disease. Any of these changes would make a huge difference to my quality of life and my daughter's."

Cath Stanley BEM, Chief Executive, said:

"I want to say a huge thank you to everyone who signed our letter. The message is clear. People living with Huntington's disease need coordinated care, better mental health support, a fairer benefits system, professionals who understand their needs, and access to any new and effective treatments. We will keep campaigning to make this a reality."

Thanks to our ambassadors Sharon and Lauren for attending on the day. 

Images from the letter hand in: