We now have specific web pages with information and advice on Covid-19 and Vasculitis.
Guidance for Vasculitis Patients Developed by Vasculitis UK
Disclaimer: This information is provided by Vasculitis UK as a guide for vasculitis patients for informative purposes only. It is based on the best information available to us. It is not a set of rules set by Public Health England or the UK government.
It is ultimately up to the reader how they implement the advice.
Update 28th September 2023
The NHS have published guidelines for those who are entitled to have anti virals should they contract covid.
They have also published a explanation of who qualifies for a booster jab in Autumn 2023, and how they can book an appointment.
Update 9th March 2023
NHS England are preparing for a Spring 2023 COVID 19 Booster programme, for the same groups that were eligible in Spring 2022:
- adults aged 75 years and over
- residents in a care home for older adults
- individuals aged 5 years and over who are immunosuppressed, as defined in the Green Book (tables 3 and 4).
The current intention is that bookings will open around April 5th, with the aim of completing delivery by the end of June.
The government has accepted interim JCVI advice which also states the NHS should plan for an extra booster vaccine dose in the autumn.
Full details here
Update 16th August 2022
The JCVI has issued recommendations for the Autumn 2022 booster vaccine programme
The JCVI has recommendations for an autumn 2022 COVID-19 vaccination booster programme. The objective of this vaccination programme is to maintain immunity for people at a higher risk from COVID-19 infection, thereby improving protection and reducing the risk of severe COVID-19 infection, hospitalisation and death over the 2022/23 winter.
The autumn booster vaccine will be offered to:
- Residents in a care home for older adults and staff working in care homes for older adults
- Frontline health and social care workers
- All adults aged 50 years and over
- Persons aged 5 to 49 years in a clinical risk group
- Persons aged 5 to 49 years who are household contacts of people who are immunosuppressed
- Persons aged 16 to 49 years who are carers
The autumn booster vaccination programme aims to be completed by the start of December 2022. In some cases, the COVID-19 booster vaccine may be administered at the same time as the annual influenza vaccine.
The British Society for Rheumatology (BSR) have updated their guidance about COVID-19 vaccination to reflect the findings from the VROOM Study. You can see their full guidance https://www.rheumatology.org.uk/practice-quality/covid-19-guidance
Update 7th April 2022
The Government’s plan for “Living with COVID-19” has come into full-effect in England.
Self-isolation is no longer legally required following a positive COVID-19 test, although the guidance remains to help reduce the spread of the virus. COVID-19 rules for Statutory Sick Pay (SSP) have been ended for the whole of the UK, meaning it will not be available from the first day of sickness. Free COVID-19 tests are no longer available for most people.
Free lateral flow tests (LFTs) should still be available for people with health conditions who are eligible for the COVID-19 treatments, people going into hospital for surgery or a procedure, and people working in the NHS or in social care.
From 18th April 2022 – Free LFTs will no longer be available for most people. They should still be available for people with health conditions who are eligible for the COVID-19 treatments, people going into hospital for surgery or a procedure, and people working in the NHS or in social care.
Until 30th April 2022 – People with COVID-19 symptoms should self-isolate and get a PCR test. Vaccinated close contacts of positive cases should do daily LFTs for seven days
From 1 May 2022 – Most people with COVID-19 symptoms won’t need to test (if you are eligible for COVID-19 treatments, you should take an LFT if you develop symptoms). Test sites will close and contact tracing will end.
From 28th March 2022 – The use of PCR tests by the general public has been stopped. LFTs are available online for free, but only for testing people with symptoms. Self-isolation is no longer a legal requirement but it is advised for those with symptoms who have a positive test result. Contact tracing will continue.
From the end of June: LFTs will no longer be available. Self-isolation guidance will be changed to advise people with symptoms to take additional precautions, such as staying at home if possible. Contact tracing and self-isolation support payments will end.
The full range of changes will take effect from 22nd April 2022
PCR testing will no longer be recommended or available for most people with symptoms. The PCR home ordering service will remain available for those who are eligible for COVID-19 treatments.
Publicly accessible testing sites will close. Local Health and Social Care Trusts will continue to provide PCR testing to support clinical care.
Those with symptoms will be advised to use lateral flow tests (LFTs) instead of booking a PCR. This will be kept under review and could remain in place up to the end of June.
Widespread asymptomatic LFT testing will cease. Free LFTs will only be made available for routine asymptomatic testing for those living, working and visiting health and social care settings, including hospitals and care homes.
Routine contact tracing will be phased out between mid-April and the end of June.
The NHS is offering new antibody and antiviral treatments to people with coronavirus (COVID-19) who are at highest risk of becoming seriously ill.
Those considered to be in the highest risk groups from COVID-19 should have received a letter/email/text informing them that they are eligible for new COVID-19 treatments if they have a positive COVID-19 test. The introduction of these new treatments is significant for those who have compromised/suppressed immune systems and for whom the vaccines are less effective.
Update 21st March 2022
NHS bookings are now open for Spring boosters.
The NHS COVID vaccination programme will today (21 March) start inviting eligible people to come forward for their life-saving Spring booster jabs. Details here.
NHS North-West have issued useful advice on COVID-19 vaccine doses for those who are severely immunosuppressed. The advice should be equally useful wherever in the UK you live.
Update 31 January 2022
The UK Government has announced that “Plan B” restrictions in England, including mandatory face masks and advice to work from home, will end from 27th January 2022.
Scotland and Wales have announced changes to some COVID-19 restrictions including the re-opening of nightclubs and the end of social distancing rules.
People are still being encouraged to work from home in Wales, whilst Scotland will be introducing guidance for “hybrid” working from 31st January 2022. Face coverings on public transport and indoor public places will remain.
All those who are at an increased risk from COVID-19 infection are being advised to continue taking extra precautions.
- Considering whether you and those you are meeting have been vaccinated – you might want to wait until 14 days after everyone’s most recent dose of a COVID-19 vaccine before being in close contact with extended family and friends especially in indoor settings.
- Continuing to practise social distancing.
- Asking friends and family to take a rapid lateral flow test before visiting you.
- Asking home visitors to wear face coverings.
- Avoiding indoor crowded spaces.
Full Guidance can be found here.
Update 24 December 2021
The NHS is offering new antibody and antiviral treatments to people with coronavirus (COVID-19) who are at highest risk of becoming seriously ill.
People considered to be in the highest risk groups from COVID-19 who receive a positive PCR test will be able to access new COVID-19 treatments. This will help protect those most at risk from the virus over the winter months, reducing the number of hospitalisations and therefore pressures on the NHS. This will be significant for those who have compromised immune systems and for whom the vaccines can therefore be less effective.
Eligible patients living in England will be informed via a ‘pre-notification’ letter or email if they have a condition that may make them eligible to receive these treatments directly, should they test positive for COVID-19 infection. See a copy of this letter/email.
PLEASE CHECK YOUR EMAIL SPAM BOX – MANY OF THESE EMAILS HAVE BEEN FOUND IN THE SPAM BOX!
Update Friday 17th December 2021
If you live in England, and are eligible for a third primary dose, and have not yet received an invitation, you can now book online.
On 3rd December 2021, an NHS briefing was circulated with details of the latest JCVI recommendations and how they should be implemented. You can access the letter in full.
There are a few reports from people on immunosuppressant medications that they have been invited to book their booster (fourth) dose. This dose should be administered three months after your “third primary dose”. Please discuss this with your consultant/GP.
On 29th November 2021, the Joint Committee on Vaccination and Immunisation (JCVI) issued new recommendations on the UK vaccine response to the new Omicron variant of COVID-19.
Booster vaccination eligibility will be expanded to include all adults aged 18 years to 39 years.
Booster vaccination will now be offered in order of descending age groups, with priority given to the vaccination of older adults and those in a COVID-19 at-risk group.
Booster vaccination will now be administered a minimum of 3 months after completion of the primary course.
All children and young people aged 12 to 15 years should be offered a second dose of the Pfizer/BioNTech COVID-19 vaccine at a minimum of 12 weeks from the first dose.
There are a few reports from people on immunosuppressant medications that they have been invited to book their booster (fourth) dose. This dose should be administered three months after your “third primary dose”.
In the UK, as of end October 2021, almost all older persons and other vulnerable groups have already been offered booster vaccination (third doses). Should the level of protection from this booster dose wane substantially over the next 6 months, and should this coincide with a further wave of infection, an additional booster (fourth) dose in the first half of 2022 may be appropriate.
Link to Source Document
Please discuss this with your consultant/GP.
Update Tuesday December 14th 2021
The UK Government has announced several new COVID19 safety measures in England in response to the emergence of the Omicron variant:
From Friday 10 December, face coverings will be required by law in most indoor public places. Face coverings are already required in shops and on public transport.
From Monday 13 December, office workers should work from home if they can, with Government exemptions for Higher Education staff.
From Wednesday 15 December, people over 18 will need a digital NHS COVID Pass, recognised international proof of vaccination, or proof of a negative Lateral Flow Test (LFT) in the last 48 hours to gain entry to many large venues. This does not include teaching and learning events.
The Government has announced its intention to replace self-isolation with daily testing for some contacts of people who have tested positive for COVID-19. Further details will be set out soon. Until then, by law you must self-isolate if told to do so by NHS Test and Trace. This includes anyone identified as a close contact of a suspected or confirmed case of the Omicron COVID-19 variant, irrespective of vaccination status and age.
Update Sunday 3rd October
Covid Vaccination Programme for Children and Young People – October 2021
This autumn, all children aged 12 to 15 years are being offered the first dose of COVID19 vaccine. For more details please read this link from the government website.
We also suggest you read:
- The JCVI (Joint Committee for Vacinations and Immunisations) full report.
- UK Government guidance for schools
After reading all the above, if any parent has any questions or concerns regarding the vaccine roll out for children aged 12 – 15 please contact the Vasculitis UK helpline.
Update Thursday 23rd September
We have prepared a note to explain the advice on Booster and Third Vaccines for those with vasctulitis.
Update Thursday 2nd September
The JCVI is advising that people with severely weakened immune systems should have a third vaccine dose as part of their primary COVID-19 vaccination schedule.
The third dose, which is separate to any potential booster programme, is being recommended “for people over 12 who were severely immunosuppressed at the time of their first or second dose, including those with leukaemia, advanced HIV and recent organ transplants.”
The full press release is here.
Update Tuesday 20th July 2021
Following the announcements and confirming most lockdown restrictions have been eased in England and Scotland from Monday 19th July, we realise that many patients with vasculitis who are immune suppressed will be feeling even more anxious. Although hospital numbers are low at the moment, the number of cases are rising rapidly and this is a concern for everyone.
We already know that some severely immune suppressed patients are at increased risk of serious illness if they are infected with Covid-19. Over the weekend, Public Health England acknowledged that some highly clinically vulnerable patients – including some kidney patients and those who are immunosuppressed – could still be at risk despite being fully vaccinated, and should seek advice from their specialists.
New guidance issued
The Government has issued new guidance for people who are clinically extremely vulnerable, “but” we remain concerned about the lack of legal protection for patients once safety measures become voluntary. For this reason, we have joined the coalition of charities calling for the Government to do more to protect those who aren’t as well protected by the vaccine.
If you are unsure how best to protect yourself, our advice remains the same:
- Get fully vaccinated – two doses are better than one
- Have a booster dose if it is offered – three doses should be better still
- Ensure everyone in your household is vaccinated including some children – see the government’s new guidance
- Keep up with social distancing – it is effective
- Meet outside or in well-ventilated areas
- Continue to wear a mask – they do work
- Encourage those around you to wear masks and respect your personal space.
We are concerned, along with other charities, that the easing of lockdown will create a two-tier system – those who are safe and those who aren’t. There will be people whose employers won’t take their vulnerabilities into account because they mistakenly believe the law no longer requires them to, and people who want their children to enjoy equal access to education, but are fearful of what they may bring home at the end of the school day. The Government should and must do better.
Update Thursday 10th June 2021
A coalition of charities, including Vasculitis UK has written an open letter to employers, calling for them to put protective measures in place for staff who may have reduced protection from the COVID19 vaccines. More details here.
UPDATE: Wednesday 19 May 2021
The latest information – Guidance on shielding and protecting those who are Clinically Extremely Vulnerable to COVID19.
UPDATE: Friday 26 March 2021
More than 3.7 million clinical extremely vulnerable people in England will no longer have to shield from the coronavirus from 1 April.
It comes as the numbers of Covid-19 cases and hospital admissions have declined for the past couple of weeks.
Letters will be sent out to this group. In the letters, people will still be advised to keep social contacts at low levels, work from home where possible and stay at a distance from other people
UPDATE: Monday 8 March 2021
Whole families and households with primary school, secondary school and college age children, including childcare and support bubbles, will be able to test themselves twice every week from home as schools return from 8 March.
For further information please visit the UK government website.
For further information and advice regarding children during the COVID19 pandemic please visit the Royal College of Paediatrics and Child Health website.
UPDATE: Thursday 18 February 2021
COVID-19 Population Risk Assessment
On Tuesday 16th February 2021, a further 1.7 million people in England were assessed to be “Clinically Extremely Vulnerable” and added to the Shielded Patient List. This was the result of University of Oxford’s QCovid® risk prediction model to identify additional people who might be at high risk from coronavirus infection.
The COVID-19 Population Risk Assessment, which uses the QCovid® model, combines a range of factors such as:
- Sex registered at birth
- Body mass index (BMI)
- Specific health conditions
You can learn more about the QCovid® model here.
People who have been identified as “Clinically Extremely Vulnerable” by this method, will begin receiving letters from 17/02/2021. You can see an example of the letter here.
People in this category will also be prioritised for vaccination.
If you feel you are “Clinically Extremely Vulnerable” and do not receive a letter and/or are not prioritised for the vaccine, please contact your consultant and/or GP to discuss your concerns.
This new method for assessing whether people are “Clinically Extremely Vulnerable” is currently only being used in England.
Scotland, Wales and Northern Ireland have not yet announced whether additional people will be added to the Shielded Patient List.
UPDATE: Wednesday 17 February 2021
Shielding in England, which was previously expected to run until 21st February, has been extended to run until March 31st 2021.
The government have updated their guidance note, which is for everyone in England who has been identified as Clinically Extremely Vulnerable (CEV). If you are in this group, you will previously have received a letter from the NHS or from your GP telling you this. You may have been advised to shield in the past.
The government has announced the intention to bring an extra 1.7m people within the scope of “shielding” status, but we are waiting for clarification on the exact details.
UPDATE: Tuesday 9 February 2021
People living in England who are over-70 or are “clinically extremely vulnerable” and haven’t been invited for their first COVID-19 vaccine dose are now encouraged to contact the NHS.
People in these groups can book their vaccine online or by calling 119.
Please bear in mind that not everyone with vasculitis is considered “clinically extremely vulnerable”. Only those who have received shielding advice in the past are currently eligible.
UPDATE: Thursday 4 February 2021
Vasculitis UK has updated its short guide to Covid-19 vaccinations and vasculitis.
UPDATE: Tuesday 5 January 2021
UPDATE: Monday 21st December 2020
New advice for the Clinically Extremely Vulnerable in Tier 4 dated December 20th
UPDATE: Monday 7th December 2020
Latest Coronavirus advice from government, dated December 2nd 2020
Vasculitis UK have published a Guidance Note on covid vaccines for vasculitis patients.
Guidance on Shielding and Protecting People who are Clinically Extremely Vulnerable from COVID19 – December 2nd 2020
UPDATE: Thursday 5th November 2020
There is new COVID19 Guidance from the British Society for Rheumatology
UPDATE: Wednesday 4th November 2020
The government have published Guidance on Shielding, for those who are considered clinically extremely vulnerable (CEV)
UPDATE: Sunday 1st November 2020
New National (“lockdown”) Restrictions apply from 5th November – 2nd December 2020 – details here.
UPDATE: Tuesday 13th October 2020
There is new “Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19” from HM Government
UPDATE: Tuesday 1st September 2020
Children and Teaching Staff returning to school in September 2020
Employers must protect people from harm. This includes taking reasonable steps to protect staff, pupils and others from coronavirus (COVID-19) within the education setting. See:
UPDATE: Monday 27th July 2020
Wearing a face covering reduces the risk of spreading infection by protecting people you come into contact with. Face coverings do not replace social distancing or handwashing, but combining all these measures gives us the best chance of preventing the spread of COVID.
In England you must wear a face mask by law :-
- on public transport
- in indoor transport waiting areas (airports, rail and tram stations and terminals, maritime ports and terminals, bus and coach stations and terminals)
- in all shops and supermarkets
- in indoor shopping centres
- in banks, building societies, and post offices
For more information about face coverings see here.
Exemption cards or badges
Those who have an age, health or disability reason for not wearing a face covering should not be routinely asked to give any written evidence.
But some people may feel more comfortable showing something that says they do not have to wear a face covering.
The government have produced artwork for three types of document that you may find helpful:
- a graphic that you can display on your mobile phone or tablet
- a card that you can print
- a badge that you can print
Advice Changes for those who are Shielding on August 1st.
On August 1st advice to ‘shield’ will be paused. From this date, the government is advising people in this group to adopt ‘strict social distancing’ rather than full shielding measures.
Read the new guidance here.
This government website will be updated on August 1st.
The Health Safety Executive (HSE) have some excellent advice for all those returning to work.
The food and medicine boxes facilitated by the National Shielding Service will stop.
Priority supermarket delivery slots will continue for people who are clinically extremely vulnerable.
UPDATE: Friday 26th June 2020
People who are considered to be ‘extremely vulnerable’ to COVID-19 received instructions from the NHS (in England, Wales, Scotland and Northern Ireland) to ‘shield’.
The guidance for shielding has changed. The UK government says the advice can be relaxed because the chances of encountering the virus in the community continue to fall. Currently 1-in-1,700 people are estimated to have the virus, down from 1-in-500 four weeks ago.
The guidance varies between England, Wales, Scotland and Northern Ireland. (see further down the page).
How to shield yourself
Shielding measures should be used when an extremely vulnerable person is living in their own home, with or without additional support. This includes extremely vulnerable people living in long-term care facilities.
Due to the reduced risk of coming into contact with someone carrying the virus, some of the measures above have now been relaxed with effect from June 22nd. The guidance still remains advisory. Many of those Shielding should receive a letter from the government in the next few days giving further information and advice.
If you do not currently feel comfortable going outdoors, you can continue to shield within your house and you may, if you wish, go outside. You should maintain strict social distancing and not go into other buildings, households or enclosed spaces. This can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household as long as you maintain social distancing (ideally, this should be the same person each time). You may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing.
If you wish to, you no longer need to observe social distancing with other members of your household.
If you are in a single adult household (either an adult living alone or with dependent children under 18), you may, if you wish, form a ‘support bubble’ with one other household. All those in a ‘support bubble’ will be able to spend time inside each other’s homes, including overnight, without needing to socially distance.
From August 1st advice to ‘shield’ will be paused. From this date, the government is advising people in this group to adopt ‘strict social distancing’ rather than full shielding measures. More information about strict social distancing can be found below.
The food and medicine boxes facilitated by the National Shielding Service will stop.
Priority supermarket delivery slots will continue for people who are clinically extremely vulnerable.
Scotland, Wales and Northern Ireland
The changes are different for each country. Click to read more:
UPDATE: TUESDAY 2nd June 2020
At 11pm on Saturday 30th May 2020, it was announced that changes would be made to the guidance for people considered ‘clinically extremely vulnerable’ who are shielding. These changes came into effect today, 1st June 2020. The newly updated official guidance can be found here.
What has changed?
The change of guidance now includes provisions for people who are shielding to spend time outside their home and to meet someone from another household, as long as they maintain social distancing. Here is what the Government says;
“People who are shielding remain vulnerable and should continue to take precautions but can now leave their home if they wish, as long as they are able to maintain strict social distancing. If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household. Ideally, this should be the same person each time. If you do go out, you should take extra care to minimise contact with others by keeping 2 metres apart. This guidance will be kept under regular review.”
What the Scientists are saying
There appears to be some controversy around this change of guidance for people who are shielding. Some scientific experts and clinicians appear to think it is too soon and have written to the Prime Minister.
Ultimately, the decision for someone who is shielding to leave their home is a very personal one. If you have any questions, doubts and concerns please discuss these with your doctor.
UPDATE: Friday 15th May 2020
A new guide has been produced: Coronavirus (COVID-19): implementing protective measures in education and childcare settings
UPDATE: Wednesday 13th May 2020
There is new guidance – “Working safely during coronavirus” – to help employers, employees and the self-employed understand how to work safely during the coronavirus pandemic.
If you are considered high risk or vulnerable please pay particular attention to sections “Who should go to work” from each category.
UPDATE: Wednesday 22nd April 2020
Some vasculitis patients who are taking immunosuppressive medications are considered to be at ‘high’ risk (or extremely vulnerable), were they to catch the virus. Whilst all vasculitis patients should follow social distancing there will be a need for most taking immunosuppressant drugs to follow stricter social distancing guidelines and stay at home and not go out for shopping and not go to work.
Hospital Departments are working to identify and contact these patients so that their own GPs are aware. However, you do not need to wait to be contacted – if you think you are in one of the high-risk groups then you should stay at home. Please contact your your lead consultant and ask for a letter to confirm you are in the “high risk group” .
It may still be necessary to attend for hospital visits or vasculitis treatment, and you should be guided by your local vasculitis team/consultant in these cases.
Unless advised otherwise by your local vasculitis team, it is important you continue all your immunosuppressant medications because the health risk associated with a flare of your disease is likely to be greater than the risks associated with COVID-19.
UPDATE: MONDAY 6th April 2020
The government have published a new website: Coronavirus (COVID-19): what you need to do
There are sections on :
- How to protect yourself and others
- Employment and financial support
- School closures, education, and childcare
- Business and self-employed
- Healthcare workers and carers
- How coronavirus is affecting public services
- How you can help
- Coronavirus (COVID-19) cases in the UK
UPDATE: WEDNESDAY 1st April 2020
Shield or Isolate? The Leeds Teaching Hospitals NHS Trust have produced a really useful flowchart to help you decide.
They have also created a video: “Guide for Social Distancing for Rheumatology patients on Immunosuppressants and Steriods during the COVID-19 Pandemic“
(Please be careful to stop the Youtube player at the end of the video: Youtube automatically follows on to play another video, and we have seen examples of very inappropriate material being selected)
UPDATE: TUESDAY 31st March 2020
We have important new content on the website:
UPDATE: FRIDAY 27th March 2020
The government has set up a system to provide a Self-Isolation Note for people who have been told to self-isolate following a call to the 111 service. Details here.
UPDATE Wednesday 25th March 2020
Are you self-isolating and having trouble getting shopping?
Many vasculitis sufferers will qualify as “Extremely Vulnerable” – and this will mean that you will qualify to have food delivered to you as part of the government scheme just starting to get going. Even if you haven’t had a letter telling you that you fall in this group, do check the registration system to see whether you qualify.
If you do NOT qualify but still need to self-isolate, then there is at present no national scheme to get supplies to you. If you don’t have support from family or neighbours, then you will need to explore other options.
The supermarkets’ home delivery services have been overwhelmed by demand, and the chances of logging on, or calling up, to get a slot are virtually nil.
Sainsburys have promised to give priority to the elderly and vulnerable, but their phone lines for registering customers in this category have been swamped – it is worth trying to get registered, but don’t be surprised if you fail. And even if you can get registered, there will still be far more people wanting deliveries than can have them. So do try your luck, but don’t be surprised if you don’t get lucky.
Morrisons have launched a Food Box scheme. This too has been swamped, but if you can get to place an order, they are offering a standard box for meat-eaters, and one for vegetarians, at £35 – they reckon it should feed two people for a week. The boxes are delivered by a parcel carrier.
In some areas, Deliveroo may be able to deliver. In some places, they are delivering from M&S “Simply Food” stores at BP petrol stations (but don’t expect the full range of products). In other areas, they may be able to deliver from smaller grocery stores, or to offer a narrower range of grocery products from petrol station shops: it varies very much by area, so type in your postcode to see what they can offer you, and at what price – prices are very variable.
There are many local voluntary food delivery schemes springing up. To find out about such schemes, the best place to start is probably to call the general enquiries number for your local council.
If you can’t get supplies through an organised scheme, then is there anyone that you trust who you could pay to do shopping for you – a cleaner, or a friend/neighbour’s cleaner perhaps? Or do you know anyone in their 20’s or 30’s who would be willing to fetch food for a modest fee?
But whoever you ask to shop for you, do be careful to use only a properly organised scheme or someone you know and trust: there are some despicable people pretending to offer support, but taking money only to disappear.
And do work out how to handle money without risk of spreading the virus. At the very least, wash your hands thoroughly immediately after handling notes, coins, or money cards.
UPDATE: Tuesday 24th March
We have some new information/links today for those who worried about work and financial problems if they self isolate:
UPDATE: Monday 23rd March
The government has provided information on shielding patient groups who are defined as extremely vulnerable. One go these groups is rare diseases. Vasculitis is a rare disease. Therefore, if you have vasculitis then you are within this group unless told otherwise by your GP or consultant. If records show you to be in the vulnerable group, you should receive a letter by Sunday 29th March. If you haven’t had a letter by then, you will need to contact your GP or consultant to clarify your vulnerability, and get your records amended if appropriate.
The underlying principle for shielding is to protect at-risk people from potential exposure. We have previously mentioned social distancing, but shielding is slightly different. You are now recommended to not leave your home for 12 weeks, avoiding all face-face exposure. Techniques includes staying at home, not leaving to go shopping, not attending any gatherings, and most importantly avoid anyone showing any form of symptoms (cough, fever, loss of taste). This advice will stay in place for 12 weeks from the day you receive your letter.
If you live with a family you need to implement social distancing within the household. This means minimising socialising with family in one room (e.g. kitchen) and trying to remain 2 metres apart. It is also recommended that if you share a bed with someone you try to make alternative arrangements. If you share a bathroom it must be cleaned done thoroughly after each use. Please don’t share kitchen equipment (knife, fork, plates, mugs). We completely understand how difficult this may be and you may not adhere to it as well as you hope, but please keep trying.
If you require medications or food, please ask your friends or relatives to collect this for you. They should place it outside your door and leave and then you can collect it. If this is not possible, then please follow this link to register your requirements and the government should be able to help. You can register as a vulnerable person needing help NOW, even before you have received the letter telling you that you need to start the 12 weeks of shielding. You can register yourself, or on behalf of someone else.
You should rearrange hospital appointments or arrange medical advice remotely e.g. telephone. Carers should not come to the property unless for essential care (washing and feeding).
UPDATE: Sunday 22nd March
The government have issued on Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19
This guidance explains how the recommended “shielding and protecting” is stronger than “social distancing” and makes other important recommendations.
NHS England have issued a note to doctors: Clinical Guide for Management of Rheumatology Patients During the Duration of the COVID-19 Pandemic . If this is relevant to you, do make sure that your doctor has seen this note.
UPDATE: Saturday 21st March
The government is offering new advice: COVID-19: guidance for employees, employers and businesses.
And we’ve added a couple of extra links in our Official Advice section (below).
UPDATE: Friday 20th March
The NHS have announced that from Monday 23 March 2020, they will be in direct contact with patients whose records suggest that they are at particularly high risk of getting seriously ill with coronavirus – giving specific advice about what to do.
They ask that high-risk patients without symptoms do not contact their GP or healthcare team at this stage, but wait to be contacted.
UPDATE: Tuesday 17 March
The government have issued new advice entitled “social distancing for everyone in the UK and protecting older people and vulnerable adults“. It does not seem to cover an important group: those who have an underlying health condition, are heavily immune suppressed, and are working in a job that cannot be done from home. We are doing what we can to get them to fill this gap.
If you feel unwell, contact 111. All Vasculitis patients should stress that you have an underlying health condition. And if you are taking medication to suppress your immune system, it is ESSENTIAL to tell them this, and to make sure that they have noted the fact.
In light of the rapid progression of the Covid-19 outbreak, we have decided that we need to progress to a new approach to protect the at-risk population. We have to take the right action at the right time and I believe this is the right time to take action. We need to begin to look at increased social distancing. The term ‘increased social distancing’ may appear scary but please have a read of the information below.
The risk to yourself, or a member of your family, occurs when you expose yourself to a situation where a person with respiratory symptoms may be present. Therefore
- Avoid public gathering and large crowds of people.
With an undetected circulation of the virus in the UK it may be appropriate to assume everyone is infected even though people are not obviously symptomatic.
- Keep person-person contact to a minimum.
Do not be embarrassed to say no.
- Avoid public transport such as trains, buses and planes.
Where this is not possible, please try to find a well ventilated area (for example, next to a window).
- Any pre-existing face-face meetings should be cancelled where appropriate.
- Try using alternatives such as telephone calls or Skype
This may include hospital appointments. If you already have a GP or hospital appointment, do call ahead to confirm it is still in place as a face-face visit. A telephone appointment may be arranged instead.
- Avoid shops and avoid contact with areas which may be frequently touched.
You may be able to do an online shop (but there is enormous demand and limited capacity, so don’t be surprised if you can’t get a slot). Otherwise, ask someone to do shopping on your behalf. (But remember to wash your hands after unloading the shopping).
Remember – infection by direct contact occurs when you are within 2 metres of someone for more than 15 minutes.
- Ask your close friends and family to phone before visiting to prevent yourself from becoming infected.
HINT – Milk supply. If you don’t have doorstep milk delivery, buy UHT milk – or fresh milk can be frozen. Regular tea and coffee is part of most people’s regular routine.
- Masks are still not recommended.
- It is essential that you continue your medication as prescribed by your medical team.
More significantly, it is essential that if you develop symptoms of the condition, call your medical team to discuss your medication. If you have any queries, please do contact them.
- Loneliness may be an issue for some people who are on their own. Please remember emails, phone calls, Skype, Whatsapp and Facetime are all available – and they carry no infection risk.
- Please check on your friends and neighbours.
If your friends/neighbours are part of the at-risk population, keep this in mind. A little knock and wave at the window may be appropriate.
We have a very friendly and active Facebook page where you can communicate with like-minded people at any time (we have some night owls as well).
Social contact & mental health are both most important. “Social distancing” and the frequent talk of a pandemic is likely to cause anxiety and have a detrimental effect on some people’s mental health condition. You should take appropriate precautions to protect your mental health just as much as your physical health.
Eat well, stay hydrated, use means of virtual social contact (e.g. phone), and try to relax. MIND have provided a brilliant source of information for coronavirus and mental health.
This does not mean that you should lock yourself in your room for the foreseeable future. It merely means you should take a strong and well-informed approach to preventing yourself from becoming infected.
Try to keep fit. The gym might not be the best place to avoid the virus. You are not likely to become infected if you’re out walking your dog or taking a stroll in the park. Just keep in mind frequently touched surfaces.
The current UK advice is to work from home where possible. Please open or re-open this conversation with your employer. Inform them that you are in the at-risk population and that due to the current outbreak ,you need to begin to take proactive steps to reduce your risk.
Not all jobs can be done from home – for example, retail. But even here, you may be able to reduce risk: perhaps you could do administrative work rather than customer-facing work. And if you do need to work in a public space, wearing protective gloves is a small way to reduce direct and indirect contact.
If someone in your direct family becomes infected they should isolate themselves away from you, or if possible, you should distance yourself away from them in a separate environment. However, we do understand how difficult this may be.
Should you become infected with coronavirus – or begin to exhibit symptoms – please follow the detailed advice provided by the UK government. If you begin to feel like you cannot cope with your symptoms at a point where you would normally seek medical advice, then call NHS 111. Clearly explain you condition(s). If you are on immune suppressing
drugs you should emphasise this and any other medication you are on. They will then be able to provide you with the appropriate clinical pathway.
At present, the government has provided little advice on how the ‘at-risk population’ should protect themselves. Therefore, we have used well-informed and reliable sources to develop an informative piece which we hope will aid you in this current pandemic.
Should the government release further information we will make this clear to you and will do our best to direct you accordingly.
Vasculitis UK Trustees write …
Currently, SARS-CoV 2 the aetiological agent behind COVID-19 is circulating within the United Kingdom. The UK government released a four step plan on how they are going to control the spread of infection. These
are; contain, delay, research, and mitigate. We have now progressed into the “delay” phase. One major action point within the delay phase is to increase pressure on the ability to work from home.
While 80% of people infected by the virus develop a mild flu-like illness there is an increased emphasis on the requirement for protection of at risk patient cohorts.
A full medical definition of an ‘at-risk patient’ is lacking. However, it is obvious to assume that immunocompromised, elderly and patients with significant co-morbidities are recognised under this blanket term. There is a wealth of literature available on viral infections of the immunosuppressed which can often lead to severe disease.For example, disseminated herpesvirus infections and varicella-zoster virus infections in leukemic paediatric patients.
Current evidence provided by international health bodies such as the European Centre of Disease Control and national bodies such as Public Health England have suggested that transmission can occur when a person is within 2 metres of an infected person for around 15 minutes. Another primary driver for the spread of the disease is believed to be fomite transmission. Therefore, an office-based environment infers
a significant risk of infection to this at risk cohort.
It is currently unclear when this pandemic will end and what role the current government will play. Furthermore, while there is a clear emphasis on protection of this group, there is no information available on how this can be done. Therefore, one of the most effective measures at this time is to avoid areas where they may be exposed to a symptomatic person.
Current Official Advice
- Government – general public advice
- Government – employers, employees and businesses
- ACAS advice for Employers and Employees
- British Society for Rheumatology
- United Kingdom and all Ireland Vasculitis Study Group – UKIVAS
Previous Advice from Vasculitis UK
If you haven’t found what you need above, do have a look at our Previous Advice page, where we are keeping the previous versions of our advice.