Shielding is a measure first introduced by the Government on Sunday 22 March 2020 to protect people classed as 'extremely vulnerable' who are at a very high risk of becoming severely unwell if they were to contract COVID-19. Around 1.8 million people in the UK have been identified as being 'clinically extremely vulnerable'. Anyone identified as such received a letter confirming this or were told directly by their doctor or hospital clinician.
England is currently operating on a tiered system to apply tighter restrictions where prevalence is highest to reduce the spread of COVID-19 (Tier 1 - medium alert, Tier 2 - High alert, Tier 3 - Very high alert, Tier 4 - Stay at home). Currently the whole of England is operating under national lockdown measures (tier 4) so if you have been identified as clinically extremely vulnerable, you are advised to shield once again and should stay at home at all times, unless for exercise or medical appointments and should not attend work, even if you are unable to work from home. For further information about the tier system and the level at which you should socially distance yourself from others, please visit the government website.
In Wales, there is currently a level 4 alert, meaning people must stay at home except for certain limited purposes and must not socialise or mix with anyone they do not live with or anyone outside of their support bubble (if applicable). Former strict shielding measures have not been reintroduced in Wales and if you have been identified as clinically extremely vulnerable, you should follow the same rules as the rest of the population of Wales but to minimise risk, you are advised not to go to work outside of the home, to keep contact with anyone outside of the household to a minimum, avoid busy areas, shop at quieter times, wear a face covering where required if possible and maintain strict social distancing and hand washing routines.
The NHS made contact with clinically extremely vulnerable people to provide further advice on shielding and how to stay COVID safe at the start of the pandemic. This included many people with Huntington's disease.
As Huntington’s disease is a progressive illness, the risk to someone who carries the gene or has very early symptoms is not increased, unless they have another underlying health condition. However, as the disease progresses, people may have swallowing difficulties, become prone to chest infections, have weakness of the respiratory system; all of which could make them much more vulnerable to COVID-19.
For further information read our news article - Clarification of COVID-19 ‘high-risk’ Huntington’s texts/letters
Whilst England is in national lockdown, you are currently advised not to go to the shops if you have been identified as clinically extremely vulnerable. You should shop and place orders online if you can or ask friends, family or a volunteer (NHS Volunteer Responders) to collect and deliver shopping to you. If you are clinically extremely vulnerable, you can get a priority delivery slot with your supermarket. If you cannot access food, your local council can offer support. This may include helping you to request a priority supermarket delivery slot (if you do not already have one) or help with shopping. You can register for support here.
If you cannot directly collect medicines yourself or cannot arrange for a friend, family member or volunteer to collect your medicines for you, you should contact your pharmacy to inform them you are clinically extremely vulnerable and need medicines delivered and they will arrange this free of charge.
In Wales you can continue to shop for yourself and pick up your own medication if you wish to, however you are advised to do this at quieter times of the day if you cannot do this online.
It is important to continue to receive the care and support you need to help you stay safe and well. You should continue to seek support from the NHS or other health providers for any health concerns. There are a range of NHS services available from home. If you need care in person, your local NHS services are well prepared and have measures in place to keep you safe.
Any carers or visitors who support you can continue to visit. They should follow social distancing guidance where close or personal contact is not required.
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.
Whilst England is operating under national lockdown measures and Wales is in alert level 4, if you are identified as clinically extremely vulnerable, you are advised to work from home and if you cannot work from home, you are advised not to go to work until further notice. During this period, you may be eligible for the COVID-19 Job Retention scheme, Statutory Sick pay, Employment Support Allowance or Universal Credit.
Access to work may be able to provide support for any disability related costs related to working from home or in the workplace that fall outside of the reasonable adjustments your employer is required to provide.
If you are identified as 'clinically extremely vulnerable' and think you have developed symptoms of COVID-19 seek clinical advice using the NHS 111 online coronavirus service or call NHS 111. You should do this as soon as you get symptoms.
If you are seriously ill and in an emergency, call 999. Do not visit the GP, pharmacy, urgent care centre or a hospital.
The Government advises that you should prepare a hospital bag containing the following items to help the NHS provide you with the best care if you need to go to hospital:
If you 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, how it might affect you and how COVID-19 can affect someone with the disease.