Novel Coronavirus (COVID-19) advice for our community

Date: Thu 5th March 2020

**Latest Update - 25th March 2020 - more details on "shielding"**

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 website

Shielding Measures

You may have heard that NHS England has begun contacting people who are considered 'extremely vulnerable', to provide instructions on shielding.

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 at 'extremely vulnerable'?

Many people with scleroderma are considered to be 'extremely vulnerable' to COVID-19 and starting from the 23rd March 2020 you will be contacted by your healthcare team and provided with instructions to 'shield' yourselves for 12 weeks.

So far, not everyone in the 'extremely vulnerable' group 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. If you believe you should be in the 'extremely vulnerable' group and advised to shield, you should hear from your medical team by 29th March 2020. If you haven't heard from them by this time you should contact them for advice.

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.


Risk Factor

Score


Corticosteroid dose of equal to or more than 20mg prednisolone (or equivalent) per day for more than four weeks


3


Corticosteroid dose of between 5mg and 20mg prednisolone (or equivalent) per day for more than four weeks


2


Cyclophosphamide at any dose orally or IV within last six months


3


One immunosuppressive medication*, biologic/monoclonal** or small molecule immunosuppressant***


1


Two or more immunosuppressive medication*, biologic/monoclonal** or small molecule immunosuppressant***


2


Any one or more of these: age over 70, Diabetes Mellitus, pre-existing lung disease, renal impairment, history of ischaemic heart disease or hypertension


1


Hydroxychloroquine, Sulfalsalazine alone or in combination


0



* 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 will soon be able to ask 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).

They are:

  1. Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough
  2. Avoid non-essential use of public transport, varying your travel times to avoid rush hour, when possible
  3. Work from home, where possible. Your employer should support you to do this.
  4. Avoid large gatherings, and gatherings in smaller public spaces such as pubs, cinemas, restaurants, theatres, bars, clubs
  5. Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media
  6. 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 will be 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, or heard from your GP, by 29th March then you should contact your GP or hospital clinician.


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
  • Iran, lockdown areas in northern Italy or special care zones in South Korea since 19 February, even if you do not have symptoms
  • Other parts of mainland China or South Korea, Hong Kong, Japan, Macau, Malaysia, Singapore, Taiwan or Thailand in the last 14 days and have a cough, high temperature or shortness of breath (even if your symptoms are mild)
  • Other parts of northern Italy (anywhere north of Pisa, Florence and Rimini), Cambodia, Laos, Myanmar or Vietnam since 19 February and have a cough, high temperature or shortness of breath (even if your symptoms are mild)

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 the 111 online coronavirus service for 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.
  • Do not leave your home until you have been given advice by a doctor, if you have returned from an infected area and develop a high temperature, cough, runny nose, sore throat or difficulty breathing. (The Guardian, 2020)

For all the latest information visit Public Health England. If you do have specific medication concerns or symptoms you are worried about, you should speak to your GP, contact NHS 111 or get in touch with your consultant. Please do this by telephone, do not go in person to a hospital or your GP unless you have been advised to do so.