COVID-19 - information and support for people with Huntington's

We are here for you

If you are affected by Huntington's disease and you need information, support and advice during this challenging time, our advisers are available to speak with you from 9 am - 5 pm, Monday to Friday. Please contact us on 0151 331 5444 or email [email protected]

Consider visiting, or joining our messageboard, to speak with others affected by Huntington's disease. Also visit our Facebook, TwitterInstagram and LinkedIn pages for updates.

Take a look at our blog and Huntington's information pages on our website for further advice and support. 

We have a programme of informative and interactive webinars on a range of topics, some in Q & A format and others providing practical demonstrations, hints and tips. Webinar times and joining details will be advertised on social media in advance of the sessions and on our events page. Alternatively give us a call to find out more. If you miss the webinars, don't worry, you can find the recordings on our information resources page and access in your own time. Please note that due to the sensitive nature of some of the Q & A sessions, for data protection reasons, we are unable to record these and provide access after the event.


COVID-19 and Huntington's disease

If you have Huntington's disease, please make sure you follow social distancing guidance and self-isolating guidance if you experience COVID-19 symptoms. If you have been identified as 'clinically extremely vulnerable' and were previously or are currently being advised to shield yourself, take a look at our shielding page for up to date information and guidance.

If you need to interact with NHS staff or emergency services at this time, you can use our 'COVID-19 letter for NHS and emergency services' to explain what Huntington's is, how it might affect you and how COVID-19 can affect someone with the disease. 

When visiting the shops and when safe for do so in accordance with local guidelines, you may find our letter for supermarkets and retail staff helpful. The letter explains more about Huntington's and its effects to those who may not understand the disease.

People in England, over the age of 11 years, are required by law to wear a face mask or covering in various enclosed settings. In Wales face masks and coverings are compulsory in all indoor settings. Find out more about wearing a face mask or face covering, where you can obtain them and what to do if you find wearing a face mask / covering difficult here.


COVID-19 and care homes

If you or a loved one live in a care home, take a look at our blog article to find out what new guidance and rules to expect when visiting or receiving visitors.

The government has advised that visits to care homes can take place with arrangements such as substantial screens, visiting pods, and window visits. Every care home resident can now nominate two named visitors who will be able to visit indoors for regular visits at the care home with regular testing, PPE and infection control measures in place. 


COVID-19 and your physical well-being

It is important you try to stay as physically active as you can during this time. Dr Una Jones, Cardiff University recently gave a webinar on exercises you can do from home:

Keeping active at home


COVID-19 and your mental well-being

During this time, you may be bored, frustrated or lonely. You may also feel low, worried, anxious, or be concerned about your health or that of those close to you. Everyone reacts differently to events, and changes in the way that we think, feel and behave vary between different people and over time. It’s important that you take care of your mind as well as your body and to get further support if you need it.

Some important things to consider if you feel your mental health may be wavering include:

  • Trying to connect with others 
  • Talking about your worries
  • Managing difficult feelings
  • Setting a daily routine
  • Doing things you enjoy
  • Take time to relax and focus on the present

Take a look at our recent blog on coping with self isolation for some hints and tips on how to look after your mental wellbeing.

There is also comprehensive guidance on mental well-being published by Public Health England. The full guidance document can be found at Guidance for the public on the mental health and wellbeing aspects of coronavirus (COVID-19)


COVID-19 and your safety

For many people around the country, the social distancing measures put them at greater risk of domestic violence. You can find out about the help and support available if you find your self in this situation in our recent news article.


Further information and advice

There are lots of official resources where you can access additional advice: