Whether you’re self-isolating or shielding at home, supporting loved ones or caring for those in the community, we’ll continue to stand by, support and speak up for people living with lupus.
This page was originally published on 10 March 2020, and was last updated on 7 July 2020. Our team works hard to review and update our advice regularly. This will be updated as more information becomes available.
Latest shielding updates – 22nd June 2020
The UK Government has updated its guidance for those people who are shielding because COVID-19 infection levels are substantially lower than when shielding was first introduced. We’re continuing to monitor Government announcements from each nation and will provide updates as more information becomes available.
Updates for people who are shielding
In England, if you’re in the shielding group, from 6 July you’ll be allowed to meet in a group of up to six people outside your home, and you’ll no longer have to socially distance from people within your own household.
If you do go out, you should take extra care to minimise contact with others by maintaining social distancing and you should continue to follow this guidance if you’re extremely vulnerable.
Letters will be sent out to inform people who are shielding of the changes with the advice that will follow in the next month.
What will change from 1 August?
From 1 August, you’ll no longer have to shield if you’re in this group, but will be advised to minimise your contact with people from other households.
You’ll be able to travel to work if your workplace is COVID-19-safe and you cannot work from home.
In addition, you’ll be able to visit food shops, pharmacies and places of worship. And you’ll be able to exercise outdoors.
Some additional support provided through the shielding programme, for example, food boxes and medicines deliveries will end on 31 July. Final registrations for food support will close on the 17 July, to allow for support to reach individuals ahead of the scheme end date of 31 July.
You’re advised to contact your local council if you need additional support after 1 August.
What will stay the same?
Those currently shielding will still be able to book priority delivery slots from supermarkets and get support from the NHS volunteer responders scheme after 1 August.
The list of those currently shielding will be maintained and kept under review after the end of July in case there is a second peak of infections and you may be asked to shield again.
Read more about the updates on the Gov UK website. This includes further information on schools and the workplace for those living in households where people are shielding. This guidance remains advisory.
Further details are expected from Government to give clarity on employment and additional support provided through the shielding programme. We’ll update our coronavirus advice when we have this information.
Should I stop shielding?
We’ve heard from many people who are concerned that there is still a risk to their health.
Shielding guidance is just advice, meaning you can choose how to follow it. If you are worried or uncomfortable about going outside, it may help to speak to a member of your healthcare team, such as your GP or rheumatologist about your situation.
Shielding updates – 1st June 2020
Starting 1 June, the shielding guidelines for England have eased slightly. People who have been advised to shield can now leave their home to walk, exercise or spend some time outdoors.
The decision to go outside is yours. If you do decide to go out, the best ways to protect yourself are to:
- keep the number of visits outside to a minimum (the government recommends once per day)
- go on your own, or with members of your household. If you live alone, you can spend time outdoors with one person from another household (this should ideally the same person each time)
- go outside when there are fewer people around, such as early in the morning
- ideally spend time in open areas
- always keep a social distance of 2 metres
- take particular care to minimise contact with other people
- do not share or exchange personal belongings (such as cups) with other people
- avoid going into enclosed spaces and other households, shops and buildings
- spend as long as you feel comfortable outside.
If you would prefer not to go outside, try spending time with the windows open, to let in fresh air and get some natural sunlight.
Strict social distancing, including staying at least two metres apart from others, is still key. People who are shielding should still avoid all non-essential face to face contact, including going to supermarkets or pharmacies. The support for shielded people remains in place.
The change in advice is based on evidence that the risk of catching COVID-19 is now lower than it was earlier in the pandemic. Transmission has also been shown to be lower outside.
If you are worried or uncomfortable about going outside, it may help to speak to a member of your healthcare team, such as your GP or rheumatologist about your personal situation.
The government says it will now regularly assess whether it is possible for the shielding guidance to be eased further, based on the latest scientific advice. The next review will take place on the week commencing 15 June, and the government will then write to everyone on the shielded patient list with information about the next steps of the shielding advice and the support available to them.
- Read about shielding in Northern Ireland
- Read about shielding in Wales
- Read about shielding in Scotland
Staying at home, keeping safe and social distancing
Find out more about what you can and can’t do during the coronavirus outbreak on the Gov.UK website (updated 11 May 2020).
Please note, this guidance applies to England only. People in Wales, Scotland and Northern Ireland should follow the information given below.
- Wales – staying at home advice
- Scotland – protect yourselves advice
- Northern Ireland – advice for individuals
Please see the latest information staying at home and self-isolating for households with potential coronavirus infection.
Global Rheumatology Alliance
Read more about Global Rheumatology Alliance – COVID-19 Patient Survey. This survey is for adult patients with a rheumatic illness or the parents of a child with a rheumatic illness. They hope to obtain insights about how best to prevent or treat COVID19.
Please note that every lupus patient is different. If you have specific questions about your condition and/or any new symptoms, you should speak to a member of your healthcare team.
The current advice is that you should not stop taking your medications unless advised to do so by your rheumatologist or rheumatology nurse. By stopping your medication, you’re more likely to have a ‘flare’, which could make you more likely to pick up an infection. If you have concerns about your medication, speak to a member of your healthcare team.
From the 23rd March the NHS have started contacting patients deemed ‘extremely vulnerable’ to provide instructions on shielding. This will include many people with lupus. Full guidance on shielding is below along with information on assessing if you are in this group.
Shielding advice for high-risk groups
What is shielding?
Shielding is a measure to protect extremely vulnerable people by minimising interaction between those who are extremely vulnerable and others. This means that those who are extremely vulnerable should not leave their homes, and within their homes should minimise all non-essential contact with other members of their household. This is to protect those who are at very high risk of severe illness from coronavirus (COVID-19) from coming into contact with the virus.
The Government has released guidelines for people who are at higher risk, we strongly recommend you follow this guidance if you are in one of the high-risk groups.
- Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19.
Information and guidance from the Rheumatology Team at The Royal Wolverhampton NHS Trust:
Advice for our HIGHEST RISK patients only:
How can I know if I am very high risk?
‘At risk’ groups
The below NHS guide published on the 16th March 2020 states that people with a diagnosis of systemic lupus erythematosus (SLE) are at a ‘high’/‘very high’ risk from the virus ( see page 4).
Generally the flu vaccination is advised for lupus patients and therefore you would be seen as ‘at risk’ and should be self isolating at home for 12 weeks.
If your entire household is unable to isolate, for instance if you are living with ‘key workers’ then these steps will help to reduce the chances of infection.
- Minimise as much as possible the time any vulnerable family members spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.
- Aim to keep 2 metres (3 steps) away from vulnerable people you live with and encourage them to sleep in a different bed where possible. If they can, they should use a separate bathroom from the rest of the household. Make sure they use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.
- If you do share a toilet and bathroom with a vulnerable person, it is important that you clean them every time you use them (for example, wiping surfaces you have come into contact with). Another tip is to consider drawing up a rota for bathing, with the vulnerable person using the facilities first.
- If you share a kitchen with a vulnerable person, avoid using it while they are present. If they can, they should take their meals back to their room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly. If the vulnerable person is using their own utensils, remember to use a separate tea towel for drying these.
- We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.
How do you look after your mental wellbeing?
Social isolation, reduction in physical activity, unpredictability and changes in routine can all contribute to increasing stress. Many people including those without existing mental health needs may feel anxious about this impact including support with daily living, ongoing care arrangements with health providers, support with medication and changes in their daily routines. How to protect your mental health – read more here!
What is coronavirus?
COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called coronavirus. Novel coronavirus (COVID-19) is a new strain of coronavirus first identified in Wuhan City, China.
Symptoms of coronavirus
The symptoms of coronavirus are:
- a cough
- a high temperature
- shortness of breath
But these symptoms do not necessarily mean you have the illness.
The symptoms are similar to other illnesses that are much more common, such as cold and flu.
How coronavirus is spread
Because it’s a new illness, we do not know exactly how coronavirus spreads from person to person.
Similar viruses are spread in cough droplets.
It’s very unlikely it can be spread through things like packages or food.
Do I need to avoid public places?
Most people can continue to go to work, school and other public places.
You only need to stay away from public places (self-isolate) if advised to by the 111 online coronavirus service or a medical professional.
How to avoid catching or spreading coronavirus
- wash your hands with soap and water often – do this for at least 20 seconds
- always wash your hands when you get home or into work
- use hand sanitiser gel if soap and water are not available
- cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
- put used tissues in the bin straight away and wash your hands afterwards
- try to avoid close contact with people who are unwell
- do not touch your eyes, nose or mouth if your hands are not clean
Check if you need medical help
NHS 111 has an online coronavirus service that can tell you if you need medical help and advise you what to do.
Use this service if:
- you think you might have coronavirus
- in the last 14 days you’ve been to a country or area with a high risk of coronavirus – see our coronavirus advice for travellers
- you’ve been in close contact with someone with coronavirus
Do not go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak to someone.
Getting help in Scotland, Wales or Northern Ireland
- Scotland: call your GP surgery or call 111 if your surgery is not open
- Wales: call 111
- Northern Ireland: call 111
How to self-isolate if you’re asked to
If there’s a chance you could have coronavirus, you may be asked to stay away from other people (self-isolate).
This means you should:
- stay at home
- not go to work, school or public places
- not use public transport or taxis
- ask friends, family members or delivery services to do errands for you
- try to avoid visitors to your home – it’s OK for friends, family or delivery drivers to drop off food
You may need to do this for up to 14 days to help reduce the possible spread of infection.
Read more coronavirus self-isolation advice.
Treatment for coronavirus
There is currently no specific treatment for coronavirus.
Antibiotics do not help, as they do not work against viruses.
Treatment aims to relieve the symptoms while your body fights the illness.
You’ll need to stay in isolation away from other people until you’ve recovered.
Government response and action plan
We’ll continue to update this page as we know more.
Thank you for all of the comments below, we are working through these as quickly as possible and replying directly. If you have specific questions about your condition and/or any new symptoms, you should speak to a member of your healthcare team.