If you are caring for someone 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]
We have begun 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. 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.
Take a look at our blog and dedicated carer pages on our website for further advice and support about caring for someone with Huntington's disease. If you are an older carer, we have a section of our website especially for you, take a look here.
If you are caring for someone affected by Huntington’s disease, please make sure you follow social distancing guidance and self-isolating guidance if you experience COVID-19 symptoms. If the person you care has been identified as 'clinically extremely vulnerable' and was previously or is currently being advised to shield themselves, take a look at our shielding page for up to date guidance.
It is important to consider contingency care plans in case you start to display any of the symptoms of COVID-19, and unable to carry on in your caring role due to self-isolation. Please visit Carers UK for more in-depth information on COVID-19 caring, contingency plans and self-isolation.
You can also find more in-depth information on COVID-19 and caring via our ‘Tips for carers on protecting those with Huntington's from COVID-19’ infographic.
If you or a loved one has Huntington's disease and must 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 and how COVID-19 can affect someone with the disease.
If the person you care for is going to the shops, they 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 they can be obtained and what to do if the person you care for finds wearing a face mask / covering difficult here.
If your loved one lives in a care home, take a look at our blog article to find out what new guidance and rules to expect when visiting.
The government has advised that visits to care homes can take place with arrangements such as substantial screens, visiting pods, and window visits. Regular testing may be offered to up to two family members or friends per resident, which will help support indoor visits with relevant PPE and infection control measures also in place.
It is important you try to stay as physically active as you can during this time. Try to take some time away from your caring role to get some exercise, even if its a short walk. Dr Una Jones, Cardiff University recently gave a webinar on exercises you and the person you care for can do from home:
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 -
Take a look at some of our well-being resources below:
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)
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.
There are lots of official resources where you can access additional advice: