Novel Coronavirus (COVID-19) advice for our community
Advice from Public Health England on COVID-19 to help you understand the implications if you have scleroderma and Raynaud's.
**Latest Update - We now have a new dedicated Coronavirus section of our website where you can find information and support to help you through this time**
We are here to support you at what is a difficult and confusing time for everyone. We know that our community may have particular concerns around how it can affect you, so we have compiled some FAQ's to help. We will endeavour to keep these up-to-date as the situation and government's advice changes. We recommend that for all the latest detailed information, advice from the government and any developments you consult the Public Health England
1.5 million people in the UK have been identified as being 'extremely vulnerable', they have all received a letter with instructions on the 'shielding' measures they should be taking to protect themselves.
What is 'shielding'?
If you are in a group which is 'extremely vulnerable' to COVID-19, you need to shield yourself to stay safe during this pandemic. You should stay at home all the time. You should not have any face-to-face contact at all except with people who provide you with essential support for at least 12 weeks. Within your home you should minimise all non-essential contact with other members of your household.
This is because your immune system might not be strong enough to fight the virus. Shielding is the best way to keep yourself safe.
How can I find out if I am 'extremely vulnerable'?
You will have received a letter advising you that you are in the extremely vulnerable category and 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 received a letter saying I am 'extremely vulnerable' what should I do now?
You should follow the guidelines set out in regards to Shielding. You should also register on the gov.uk website to say whether or not you require support for example with food or medical deliveries. There are also lots of local support groups being set up, you should check with your local council websites to find out what support you can access. Do also contact your GP or medical team if you have any worries or concerns.
I am in the highest clinical risk group but I am not currently registered with a GP or hospital how will I be contacted?
The NHS is making every effort to identify all individuals who they think should be on the highest clinical risk list. However, it is difficult for them to get in touch with individuals who are not registered with a GP or with a 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/ local community groups, to get support to those who might be eligible.
I haven't received a letter but believe I should be in the 'extremely vulnerable' group - what should I do?
If you believe you should be in the 'extremely vulnerable' group and advised to shield, you should contact your GP or medical team.
If you're not sure, the calculator below can help you work out your risk level.
The British Society for Rheumatology (BSR) have produced a risk stratification guide for rheumatologists to use when considering the risks to patients with rheumatic diseases (like scleroderma) and a scoring grid to help doctors and nurses categorise the risk level of their patients.
The risk level is split into three categories;
- Score of 3 or more – the person should be instructed to shield
- Score of 2 – the person should self-isolate or maintain social distance at their discretion
- Score of 1 or less – the person should maintain social distance
The scores are calculated by adding up the total of all the risk factors that may apply to a patient (it is important to bear in mind that this tool is for all rheumatology patients, not just those with scleroderma). This is a guide so please do contact your Rheumatology team if you are unsure of your risk.
Corticosteroid dose of equal to or more than 20mg prednisolone (or equivalent) per day for more than four weeks
Corticosteroid dose of between 5mg and 20mg prednisolone (or equivalent) per day for more than four weeks
Cyclophosphamide at any dose orally or IV within last six months
One immunosuppressive medication*, biologic/monoclonal** or small molecule immunosuppressant***
Two or more immunosuppressive medication*, biologic/monoclonal** or small molecule immunosuppressant***
Any one or more of these: age over 70, Diabetes Mellitus, pre-existing lung disease, renal impairment, history of ischaemic heart disease or hypertension
Hydroxychloroquine, Sulfalsalazine alone or in combination
* 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 includes: all JAK inhibitors – baracitinib, tofacitinib etc
What should I do now?
If you have read this and think you might be in the 'extremely vulnerable' group, register for support now. You should stay at home at all times and avoid any face-to-face contact at all except with people who provide you with essential support for at least 12 weeks. Do not make any changes to your medication without discussing with your rheumatology department.
You can find out more about the provisions for people who are 'extremely vulnerable' from COVID-19 by visiting the gov.uk website.
If you are in the 'extremely vulnerable' group, you can register for help getting deliveries of essential supplies like food and medicine. In England, you can register for this help on the gov.uk website. There's separate advice for Northern Ireland, Scotland and Wales.
General advice for our community
1. Am I more at risk of catching coronavirus because of my condition/the medication I am taking?
Coronavirus is passed from human to human - the government measures are in place to reduce everyone's risk of catching this and spreading it, but especially those they have identified as being more vulnerable to having more severe symptoms if they did catch it.
2. Am I more at risk of developing severe symptoms because of my condition / medication I am taking?
It is thought that coronavirus can cause more severe symptoms in people with weakened immune systems and the elderly. The government is advising those who are at increased risk of severe illness from coronavirus to be particularly stringent in following social distancing measures. You can find full guidance in regards to those measures and the currently identified at risk groups at Public Health England you can also seek advice by telephone by calling 111 if you develop any symptoms.
3. Should I stop taking my medication as a precaution?
You should continue to take your medication, unless directed otherwise by your rheumatology team.
4. Should I be social distancing myself even if I don't have any symptoms?
The government have advised everyone to take measures to reduce social interaction between people in order to reduce the transmission of coronavirus (COVID-19). It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. They have advised people those who are at increased risk of severe illness from coronavirus to be particularly stringent in following social distancing measures. These include people over 70 and people with underlying health conditions (ie anyone instructed to get a flu jab as an adult each year on medical grounds) and pregnant women. You can find the full list here
5. What is social distancing?
Social distancing measures are steps you can take to reduce the social interaction between people. This will help reduce the transmission of coronavirus (COVID-19).
- Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough
- Avoid non-essential use of public transport, varying your travel times to avoid rush hour, when possible
- Work from home, where possible. Your employer should support you to do this.
- Avoid large gatherings, and gatherings in smaller public spaces such as pubs, cinemas, restaurants, theatres, bars, clubs
- Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media
- Use telephone or online services to contact your GP or other essential services.
6. Should I be self-isolating?
The same guidance applies to the general population and those at increased risk of severe illness from coronavirus (COVID-19). If you develop symptoms of COVID-19 (high temperature and/or new and continuous cough), self-isolate at home for 7 days. This guidance varies according to your living situation, the severity of your symptoms and those you live with - for full details on when and how to self-isolate - click here
There are lots of resources out there for managing self-isolation and social-distancing - we will be trying to help our community as much as possible but please do also check for local support services and neighbourhood support schemes. You can call our helpline - 0800 311 2756 or the NHS 111 service if you are feeling anxious and want to talk.
7. What is shielding and should I be 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. There are 1.5 million people in the UK who have been identified as extremely vulnerable and they have been notified by letter to shield themselves for 12 weeks from receipt of the letter. You can find more information about these measures here. If you believe that you are in this group and have not received your letter you should contact your GP or hospital clinician.
8. I have been told that I am not considered to be at highest clinical risk, but I still want to be in the 'shielding' group, what should I do?
We would advise that you follow strict social distancing measures, you can also contact your GP or hospital consultant if you believe you should be included in the group. Shielding measures are extreme and you may find it more beneficial for your mental and physical well-being to follow social distancing which would allow you to leave your house within the government's guidelines. Be advised that the government's dedicated food and medicine delivery service is only available to those on the shielding programme but you may find local support services that can help you.
9. I live with a person who is 'shielding' what measures should I take?
If you live with someone who has been identified as being at highest clinical risk, you should read and familiarise yourself with the 'shielding' guidance below or on the gov.uk website , and strictly follow social distancing guidance. The rest of the household should support the person shielding to stay safe and stringently follow guidance on social distancing, reducing their contact outside the home. In your home, you should:
• minimise the time spent in shared spaces (kitchen, bathroom and sitting areas) and keep shared spaces well ventilated.
• aim to keep 2 metres (3 steps) away from others and encourage them to sleep in a different bed where possible.
• use separate towels from other people in the house and, if possible, use a separate bathroom from the rest of the household, or clean the bathroom after every use.
• avoid using the kitchen when others are present, take your meals back to your room to eat where possible, and ensure all kitchenware is cleaned thoroughly
General Information on Coronavirus (Covid-19)
1. What is COVID-19?
The name 'COVID-19' has been assigned to the new strain of coronavirus that first emerged in Wuhan, China in December 2019. Like other coronaviruses, it has come from animals; most of the first cases were in those who either worked inor regularly visited a wet market in the city of Wuhan. As a group, coronaviruses are fairly common across the world, and in humans cause respiratory tract infections. COVID-19 in particular can cause pneumonia. Based on the WHO's declaration that this is a public health emergency of international concern, the UK Chief Medical Officers have raised the risk to the UK from low to moderate
2. How does infection with COVID-19 occur?
Human-to-human transmission has been confirmed, but as it is a new strain of virus, scientists are working to understand the full mode of transmission.
3. What are the symptoms? What do I do if I get the symptoms?
Reported symptoms of COVID-19 are coughs, fever and breathing problems, which may progress to pneumonia. In severe cases, there can be organ failure. It is important to note that some individuals may spread the virus before they notice any symptoms, as with other illnesses such as the flu. Evidence thus far suggests that most cases are mild.
Travellers returning to the UK from the below locations should stay indoors and avoid contact with other people immediately if you've travelled from:
- Hubei province in China in the last 14 days, even if you do not have symptoms
If there is a chance you have coronavirus, you may be asked to self-isolate for 14 days to help reduce the spread of infection. This means that you should:
- Stay at home
- Not go to school, work or other public places/events
- Not use public transport or taxis
- Try to avoid visitors to your home – friends, family and delivery drivers can come to do errands or drop off food, however.
You should not go to a GP surgery, hospital or pharmacy. Use theor further information.
4. I am intending to travel soon, should I change my travel plans?
You should keep up with and follow all the latest travel advice provided by Public Health England.
5. How can I protect myself?
Please ensure that you are following the current government advice in regards to social distancing and self-isolation. Other general advice for protection against COVID-19 is as follows:
- Wash your hands: wet your hands with clean running water, and apply soap. Lather your hands, including the backs, between your fingers, and under your nails and scrub for at least 20 seconds. Rinse.
- Cover your mouth and nose with a tissue when you cough or sneeze then throw the tissue in the bin and wash your hands. If you do not have a tissue to hand, cough or sneeze into your elbow.
- Face masks offer some protection as they block liquid droplets. However, they do not block smaller aerosol particles that can pass through the material of the mask. The masks also leave the eyes exposed and there is evidence that some viruses can infect a person through the eyes.
- Seek medical help if you have a fever, cough and difficulty breathing, and share your travel history with healthcare providers
- Avoid direct, unprotected contact with live animals if visiting live markets in affected areas.
- Stay indoors and avoid contact with other people for 14 days if you have returned from an affected area in the last 2 weeks.