Training professionals is part of our campaign to raise awareness around Huntington's disease and ensure better care and support in the community.

Ivy, Specialist Adviser for the Huntington’s Disease Association, provided seven training sessions to over 450 police officers in Cleveland, North East of England.

Often people with Huntington’s have been accused of being drunk or on drugs. This is just one of the many challenges the Huntington’s community faces. We are trying to change this. 

Ivy got in touch with Cleveland police force after a gentleman she supports told her that he was accused of being on drugs and arrested. He was out with his dog when a member of the public accused him before he was approached by the police. Due to his involuntary movements and impaired speech, the police misunderstood the situation and he was handcuffed and put in the back of a police van.

The police did not listen when his family tried to explain that he had Huntington’s disease, nor did they give them any information. Eventually, they were able to explain that their family member was displaying symptoms of Huntington’s disease and he was let go, but he is understandably still very shaken up from the situation. Due to his movements, this meant that the handcuffs left marks on his wrists which just added to the stress of the situation. The gentleman said: "I was hurt, I'm still getting over it, I felt like they were going to crack my skull."

The gentleman did not want to make a formal complaint but did want to raise awareness and help stop someone else from having this experience. He spoke to Ivy and they agreed she would contact the force and offer to provide some more information or training. Cleveland police force signed up to a series of eight online and face-to-face sessions to understand more about Huntington’s disease and how to support people that they may come into contact with. Jen, Corporate Communications Officer for Cleveland Police said:

We have been working closely with the Huntington’s Disease Association so that we can raise awareness amongst our officers and staff of what the disease is and how it impacts people, so that our organisation can better understand the needs and behaviours of those in our communities who are affected by Huntington’s disease. This will ensure we are better equipped in our knowledge of the disease, if and when we do come into contact with anyone who is affected by this illness.

How can the community help?

If you or your loved one has been impacted in a similar way whilst being out in the community, please contact us or your local Specialist Adviser. We can offer our training not only to health and social care professionals but to any professionals who may work with or need to support with someone affected by Huntington’s disease.

We can provide you or your loved one with an 'I have Huntington's disease ID card' which is a way to explain symptoms and keep an emergency contact safe should there be an incident. After the training with the police, Ivy said:

Thanks to the gentleman who chose to raise awareness of the disease and to Cleveland police for being so proactive in training their police officers to understand Huntington’s disease. This will help prevent similar incidents from happening again.