COVID-19 - Assessing Your Risk
Information update - 22 June 2020
Information update - 29 May 2020
We have updated the terminology within these pages that describes each risk category, in line with the current NHS guidance. They have identified two levels of 'higher risk' which have been classed as high risk (clinically extremely vulnerable), and moderate risk (clinically vulnerable). These categories are described in more detail below.
We will continue to review the situation on a daily basis and will update this information as the advice continues to change.
Our team are here to offer help and support during what is a difficult and confusing time for everyone. We are aware that many people who are living with scleroderma or Raynaud's have concerns surrounding the risk of COVID-19 and the right measures to be taking. We have put together the following guidance to highlight the advice that is most relevant to our community.
Assessing your risk - why is this important for rheumatology patients?
Although coronavirus can make anyone seriously ill, the risk is higher for certain people, including older people, people with health conditions and pregnant women. Those who are at a higher risk of severe complications from COVID-19 should take extra steps to protect themselves.
If you have an autoimmune condition such as scleroderma and/or you are receiving treatment to control your immune system, you may face a higher risk of severe illness if you catch this virus and should therefore practise social distancing by staying alert and staying safe. Some individuals should also self-isolate as part of 'shielding.'
Am I at risk because of my scleroderma?
Since COVID-19 is a new disease there is limited information regarding risk factors for severe infection. Based on the available information and clinical expertise, older adults and people of any age who have serious underlying medical conditions such as scleroderma-related lung involvement and who are receiving immunosuppressive medications are at a higher risk of more severe complications, and are more likely to be admitted to hospital.
Those who are considered to be at high risk (clinically extremely vulnerable) to COVID-19, will receive a letter from the NHS (within England, Wales, Scotland and Northern Ireland) with instructions to 'shield' for a minimum of 12 weeks from the date of the letter. The first text messages and letters were issued on 23 March 2020. The letter will set out key advice to follow for at least the next 12 weeks. The safest course of action is to stay at home at all times and avoid all face-to-face contact outside your household, except for carers and healthcare workers who you must see as part of your medical care.
Not everyone considered to be at high risk (clinically extremely vulnerable) has been contacted by the NHS. GPs and hospital clinics are currently reviewing their patient registers and conducting risk stratification to identify more patients who need to be instructed to 'shield' for 12 weeks. It is possible that your consultant may decide that you should be in this group, based on your individual condition. If so they can arrange for you to be added, and you should receive a letter to advise this, although there may be a slight delay before you are recognised by the shielding support telephone line and website as someone who is eligible for support.
The British Society of Rheumatology (BSR) has produced the following stratification guide to help patients understand which risk group they belong to. Again, this tool is designed for all rheumatology patients, not just those with scleroderma. It is intended as a guide, so do contact your rheumatology team if you are unsure of your level of risk and the appropriate actions.
* Immunosuppressive medications include: Azathioprine, Leflunomide, Methotrexate, Mycophenolate (mycophenolate mofetil or mycophenolic acid), ciclosporin, Tacrolimus, Sirolimus. It does NOT include Hydroxychloroquine or Sulphasalazine, either alone or in combination.
** Biologic/monocolonal includes: Rituximab within last 12 months; all anti-TNF drugs (etanercept, adalimumab, infliximab, golimumab, certolizumab and biosimilar variants of all of these); Tociluzimab; Abatacept; Belimumab; Anakinra; Seukinumab; Ixekizumab; Ustekinumab; Sarilumumab; Canakinumab
*** Small molecules include: all JAK inhibitors – baracitinib, tofacitinib etc
These 'at risk' groups are reviewed and updated by NHS England to reflect changing guidance. They identified two levels of 'higher risk' groups and updated the terminology used to classify the groups. The names were changed and updated on the NHS website between Wednesday 6 May and Wednesday 13 May 2020.
It is important to note that the lists may not include everyone who is at higher risk from coronavirus and may change as we learn more about the virus.
High risk (clinically extremely vulnerable)
The Government define the "moderate risk" group as being more vulnerable to COVID-19 than the average person, but not as much as people in the “high risk" group. It is very similar to the group of people eligible for the free annual flu jab.
Scleroderma can be associated with increased risks, depending on your symptoms, treatment, or other factors. Government data does not hold that level of detail about each person.
People with scleroderma who are defined as being at high risk (clinically extremely vulnerable'), according to the BSR stratification guide and their doctor, and therefore should shield include:
- Those on high dose steroid treatment (the equivalent of prednisolone 20 mg once a day or more for four or more weeks)
- Those who have had cyclophosphamide treatment within the last six months
- Those with recent poorly-controlled disease / disease flare
- Those on a lower dose of steroid (equivalent of prednisolone 5 mg a day or more) plus another immunosuppressive drug (not including hydroxychloroquine)
- Those who are taking two immunosuppressive drugs (not including hydroxychloroquine) and are either aged 70 or over, or have another health problem such as diabetes, heart disease, high blood pressure, kidney disease or lung disease
- You have been diagnosed with scleroderma related Interstitial lung disease ( ILD) or pulmonary artery hypertension (PAH)
Expert doctors in England have identified specific medical conditions that, based on what we know about the virus so far, place someone at greatest risk of severe illness from COVID-19. Further information about medical conditions within these groups can be accessed from the NHS website.
If you are considered high risk, the UK Government currently recommends you self-isolate (shield) until at least the end of June 2020.
Shielding is designed to protect people who are high risk (clinically extremely vulnerable) to COVID-19, by considerably reducing any interaction between them and others. This means that those who are high risk (clinically extremely vulnerable) should not leave their homes. From 1 June, guidance was relaxed in line with the latest evidence. This meant shielding individuals could choose to safely spend time outdoors with members of their immediate household, or, if they live alone, with one other person from another household.
The government have now reviewed the latest evidence and from 6 July those shielding will be able to spend time outdoors in a group of up to 6 people including those outside of their household, while maintaining social distancing.
Those who are shielding and live alone or are single parents with children will also be able to create a 'support bubble' with one other household of any size, following the same rules that are already in place for the wider population.
You can find out more about changes to the shielding measures and the latest advice in England, Wales, Northern Ireland and Scotland by clicking here. If you believe that you are in this group and have not received your letter, you should contact your GP or hospital clinician.
How can I find out if I am at high risk?
You will receive a letter advising that you are in the high risk group, with details of the 'shielding' measures that you should be taking for 12 weeks (from the date of the letter), as well as advice on how to access support for food and medicine deliveries.
I have been told that I am not considered to be at high risk, but I still want to be in the 'shielding' group, what should I do?
The advice from the Government is that you follow strict social distancing measures for the time being. You can also contact your GP or hospital consultant if you believe you should be included in the shielding group.
Since shielding measures are so extreme, you may find it more beneficial for your mental and physical wellbeing to follow social distancing rules, which would allow you to leave your home within Government guidelines. Be advised that the Government's dedicated food and medicine delivery service is only available to those included within the shielding category, but you may find local support services that can help you.
I have received a letter saying I am at high risk, what should I do now?
You should follow the guidelines with regard to shielding, as well as register on the gov.uk website to say whether or not you require support, for example with receiving food or medical deliveries. Check your local council website to find out about any services that you can access. Do not hesitate to contact your GP or medical team if you have any worries or concerns.
I am in the high risk group, but I am not currently registered with a GP or hospital, so how will I be contacted?
The NHS is making every effort to identify all individuals whom they think should be on the high risk list. However, it is difficult for them to get in touch with those who are not registered with a GP or hospital service. They are working with the voluntary sector to see if there is more they can do to identify people who are known to charities or local community groups, to get support to those who might be eligible.
I have not received a letter but believe I should be in the high risk group - what should I do?
If you believe you should be in the high risk group and advised to shield, you should contact your GP or medical team.
What should I do now?
If you have read this and think you might be in the high risk group, you should stay at home and avoid any face-to-face contact at all except with people who provide you with essential support for at least 12 weeks or until the advice changes. Do not make any changes to your medication without discussing this with your rheumatology department.
If you are in the high risk group, you can register for help in receiving deliveries of essential supplies, including food and medicine. In England, you can register for this help on the gov.uk website. There is separate advice for Northern Ireland, Scotland and Wales.
Supermarket priority shopping times and deliveries
Some major supermarkets have introduced priority shopping hours in stores for high risk (clinically extremely vulnerable) people. If you have received a letter, you will be able to access this service.
Supermarkets have also introduced priority booking online for vulnerable customers trying to book a home delivery. If you live in England or Scotland, are in the high risk group and already registered with a supermarket, you should have had a letter from them.
If you think you should have received a letter but have not had one, you should contact your GP.
Morrisons have a phone service for food boxes, ready meals or a choice of essential groceries. They have shops in many parts of England, Scotland and Wales. Call 0345 611 6111.
How to register
You can also call the Royal Voluntary Service to get help from NHS volunteers with shopping and collecting prescriptions, on: 0808 196 3646
Across the UK, the COVID-19 Mutual Aid website has a list of local groups that might be able to offer practical help with shopping or friendship.
You can also find out what your local council can do to support you on the UK Government website.
If you live in Scotland, you can use the Viral Kindness website to find help in your local community, including with food shopping and deliveries. Or call the Scottish Government helpline for people at risk who find it hard to get online on: 0800 111 4000
In Northern Ireland, contact the COVID-19 Community Helpline for information and guidance from Advice NI.
If you cannot go out because you are high risk, self-isolating or for any other reason
If you can, ask friends, family or neighbours to go out and get food and other essentials for you. If you do not have others to help you, there may be community groups who can help in your area, or your local shops may be able to provide orders for delivery (by phone or by email).
If someone is going to the shops for you, most of the major supermarkets have ways you can pay for your shopping, such as e-vouchers or gift cards. You can buy these online and the person shopping for you can use them in store. To find out about payment options, visit:
- Your supermarket's website
- UK Finance (the collective voice for the banking and finance industry)
- If you or a family member meet the criteria to get support from the NHS Volunteer Responders programme, you can call 0808 196 3646 and ask for help with food, prescriptions and essential items
- If you need urgent help and have no other means of support, contact your local authority to find out what support services are available in your area
We know that supermarkets are experiencing extremely high demand. We want to make sure that if you are in a high risk group, you will be able to get a delivery. Please feed back to us if you are experiencing any issues. We will make the UK Government aware of the problem and we are working to make sure they improve things as quickly as possible.
People at moderate risk (clinically vulnerable)
To help you understand if you are in this risk group, please refer to the BSR stratification guide. It is intended as a guide, so do contact your rheumatology team if you are unsure of your level of risk and the appropriate actions. If you are in this group, Government guidance recommends that you should practice strict social distancing measures (such as self-isolation) for a period of 12 weeks.
What to do if you are at moderate risk
If you are at moderate risk from coronavirus, it is very important to follow the advice about staying at home and social distancing to avoid coming into contact with the virus. This means that you should only leave your home if this is essential, such as to collect food supplies or medicine, or for exercise.
Unlike people at high risk, you will not receive a letter from the NHS advising you to stay at home at all times.
Support for the 'vulnerable'
Local councils and community volunteering groups are providing support services for people in the 'vulnerable' group. You can find your local council here. Information about additional support can be found on our regularly updated page, here.
Some people who have scleroderma with no overlapping diagnoses or other health problems, whose condition is well-managed with no recent flares and treated with only hydroxychloroquine, may be considered to be in the lower risk group, and recommended to follow standard social distancing measures (you can find the official guidance here). It is important to remember that this advice is not specific for scleroderma, and this interpretation is based on the guidance currently available. If this changes, an update will be provided on this page.
If you are pregnant and worried about coronavirus, see advice about pregnancy and coronavirus.
Working with scleroderma and Raynaud's during lockdown
If you have a shielding letter, your employers should be supporting you in shielding. If you can work from home in your job, it is fine for you to continue working while shielding, as long as you are well. If you cannot work from home, you should not be working whilst shielding.
The Government advice is that employers must support vulnerable and at-risk workers to protect themselves. We have put together questions and answers on employment issues for our community. There is also helpful guidance from ACAS about coronavirus and employment issues.
The shielding advice also applies to key workers, and there is some useful information in the NHS Employers' guidance.
Why isn't scleroderma specifically named on the list of conditions in the Government guidance?
The lists published by the Government of the groups with an increased risk of severe illness from coronavirus are the clinically extremely vulnerable group and the extremely vulnerable group taken from the NHS annual influenza vaccination programme. The Government's coronavirus guidance fails to include an essential line; “This list of conditions is not definitive. It is always an issue of clinical judgement."
Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) has written to the Minister for Rare Diseases, requesting additional clarity from the NHS and Public Health England for people with autoimmune rheumatic conditions in relation to what category patients will fall into and the guidance they will receive. Scleroderma is not currently listed on the higher risk groups. RAIRDA has requested a more comprehensive list of 'significant health conditions' to be published with improved guidance.
“The clinical guide for the management of rheumatology patients during the coronavirus pandemic" published by the NHS on 16 March 2020 clearly states that people with a diagnosis of systemic sclerosis (SSc)/scleroderma (SSc) are at a 'high'/'very high' risk from the virus. See page 4 .