Coronavirus (COVID-19): What your risk means for you

22 November 2020

 

New guidance for people with Crohn’s and Colitis on level of risk of complications from COVID-19, and what you should do as a result. 

 

Not everyone with Crohn's or Colitis will have an increased risk of complications from coronavirus, but some may need to take extra precautions. Our guidance is specific to Crohn's and Colitis, and shows what action you need to take depending on your medication, age and other risk factors. 

This information only describes the risks for Crohn's and Colitis - if you have an additional health condition contact your healthcare professional for additional guidance. 

See our General Questions for more information on COVID-19.

About the risk categories
What is my risk of serious complications from COVID-19?
What's the risk for under 18s?
Highest Risk (Extremely clinically vulnerable)
Moderate Risk (Clinically vulnerable)
What does 'strict' social distancing mean?
Lowest Risk

Managing daily life
Do I need to shield?
Will I recover from coronavirus if I'm at increased risk?
What activities can I do depending on my risk level?
Can I form a Christmas Bubble?

Is it safe to return to work?
Will stopping my medicine reduce my risk?
Should my child go back to school?
Is it safe to go to university?
I have other risk factors which aren’t covered here

Understanding your risk
Why is this guidance different from government letters?
Why did I receive a letter from the NHS if I'm not high risk?
I'm at high risk but didn't receive a letter from the NHS


What is my risk of serious complications from COVID-19?

Our information below has detailed information about the risk levels. You can also use our condensed decision tree to quickly find out what your risk is. If you'd like to share the decision tree, please use this link: crohnsandcolitis.org.uk/decision-tree

The IBD Registry, working with the British Society of Gastroenterology (BSG) have developed a 15-minute online survey that will help you identify your risk. The results will be available for you to download or save. Find out more about the COVID-19 UK IBD Tool.

My experience with coronavirus felt no different to when I have a bad flare up. I was scared going into the coronavirus ward but a lot of the fear I think was generated from watching too much news of coronavirus.  The reality of me having had severe flare ups is that it prepared me well to deal with what coronavirus threw at me.

Emma
Living with Colitis and a stoma




What's the risk for under 18s?

COVID-19 can affect children, but it doesn't seem be as serious and most children will only get a mild form of the illness.

The British Society for Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) has put together specific guidance on the risk categories for children with Crohn's or Colitis. We've used this information to create a decision tree for the risk in children. If you'd like to share the decision tree, please use this link: crohnsandcolitis.org.uk/decision-tree-children


Why are the risk groups different for children?

The original guidance on risk in children was published in March 2020, and since then children’s doctors in the UK and across the world have been collecting data on children who have been affected by COVID-19. Reassuringly, despite a large number of adults falling seriously ill with COVID-19, very few children in the UK have been admitted to hospital unwell with COVID-19 - and many of those have been only mildly affected.

The risks of serious harm are very low for children and cases of children with Crohn's or Colitis being admitted to hospital with COVID-19 are extremely rare. Based on this evidence, children with Crohn's or Colitis who were previously in the moderate risk group are no longer considered to have an increased risk of serious illness from COVID-19. Therefore, there is no need for a moderate group.

Children who were previously asked to shield may still be considered high risk - but you should speak to their healthcare team. Your child's healthcare team will assess their risk based on your child's individual condition and may decide that your child no longer needs to shield.

Crohn's and Colitis are fluctuating conditions so it's possible that your child's risk may change over time. If you're worried about a change to your child's risk you should speak their IBD team.

This guidance is under constant review as new evidence becomes available.


Highest Risk (Extremely clinically vulnerable)

If you meet the criteria below, you have a higher risk of severe illness from COVID-19. You are strongly advised to carry on taking your medication as stopping your medication will put you at higher risk.

You are at highest risk if any of the below apply to you:

  • I'm currently taking oral or intravenous steroids equivalent to 20mg or more of prednisolone per day (except budesonide or beclometasone)
  • I have started a new biologic medicine within the last 6 weeks, in combination with another immunosuppressant or steroids (except budesonide or beclometasone)
  • My Crohn's or Colitis is active despite taking a medicine listed in the 'Moderate risk' section. For example, if you are experiencing a flare or your Crohn’s or Colitis has not been well controlled over the last month.
  • I have short gut syndrome (less than two metres of small bowel left after surgical removal) which requires nutritional support 
  • I take parenteral nutrition 

You are also at highest risk if any of the below apply you AND you are also taking one of the medicines listed in the 'Moderate Risk' section AND/OR your condition has become very active with moderate to severe symptoms.  

  • I’m over 70 years old
  • I take medicines for high blood pressure
  • I take insulin or tablets for diabetes 
  • I take inhalers or tablets for asthma everyday
  • I have emphysema, COPD or another respiratory condition which limits how much I can do day-to-day
  • I’ve been diagnosed with angina (chest pain caused by your heart) or had a heart attack or a stroke.
  • I have heart failure which limits how much I can do
  • I have heart valve disease which limits how much I can do, or I’ve had heart valve surgery

Even though shielding has been paused, you should still try to stay at home as much as possible. You can get extra support with essential shopping and supplies through your local authority.


Moderate risk (Clinically vulnerable)

If you are taking any of the medicines listed below, you have a moderate risk of severe illness from COVID-19. Moderate risk means your chances of severe illness from coronavirus are higher than the general population, but not as high as people who are seriously ill. It's strongly recommended you strictly follow the government's advice on staying alert and social distancing for clinically vulnerable people. For details on what you're advised to do or not to do, see our terminology table

You are also at moderate risk if you have stopped taking any of the below medication (apart from steroids) within the last three months. This is because they can stay in your blood for this amount of time. 

You are strongly advised to carry on taking your medication, as stopping your medication can lead to a flare-up, which will put you at higher risk.

BIOLOGICS

IMMUNOSUPPRESSANTS

OTHER

  • Tofacitinib (Xeljanz)
    Steroids equivalent to less than 20mg prednisolone per day (except budesonide or beclomethasone)
  • Any other immunosuppressant/biologic trial medication prescribed by your doctor as part of a clinical trial
  • You are taking any of the medicines in the 'Lowest Risk' section or no medicines for your Crohn’s or Colitis and your condition has become active. For example, if you are experiencing a flare or your Crohn’s or Colitis has not been well controlled over the last month.

If you are taking any of the above medicines or are in the 'other' group, your risk is moderate unless you are:

  • over 70 years old
  • or have another health condition as listed in the 'high risk' group

In which case you will be classified as highest risk.

What does 'strict' social distancing mean?

People in the moderate group do still have a slightly increased risk of serious complications from coronavirus. Therefore, even though you’re still able to follow the current government guidelines on social distancing, you should take all possible precautions when out, and stay home when possible. As much as you can, try to shop for groceries online and work from home. See our terminology guide below for more help understanding how to practice strict social distancing.

Click the terminology table to enlarge

You may already be used to taking extra precautions because of the medicine you take. For example, people taking azathioprine can be out in the sun, but are encouraged to be extra careful about sun protection. ‘Strict social distancing’ should be approached in a similar way – while it is safe to participate in the same activities as the general population, be mindful that your risk is slightly higher than other people, and always take extra care. See our blog for tips about going outside during the pandemic.


Lowest Risk

If you are taking any of the medicines listed below, and if you do not fall into the highest and moderate risk categories above your risk is the same as the general population and you should follow the government's advice on staying alert and social distancing. This includes people who do not take any medicines for their Crohn's or Colitis, or stopped taking any of the medicines in the moderate risk column more than three months ago. 

  • 5-ASAs (e.g. mesalazine, Sulphasalazine, Olsalazine)
  • Rectal therapies (e.g. steroid or 5-ASA suppositories or enemas)
  • Orally administered topically acting steroids (budesonide or beclometasone) 
  • Medicine for bile acid diarrhoea (colestyramine, colesevelam, colestipol) 
  • Anti-diarrhoeals (e.g. Imodium (loperamide)) 
  • Antibiotics for bacterial overgrowth or perianal disease.

But if are taking any of these medicines and your condition has become very active with moderate to severe symptoms then you are in the Moderate Risk group.

If you are pregnant you are not at higher risk because of your Crohn's or Colitis - but the government is advising that all pregnant women should strictly follow the government’s advice on staying alert and social distancing.

 


Do I need to shield?

Governments in Wales and Northern Ireland are not recommending that you shield, even if you live in an area with local restrictions, unless you receive a letter separately informing you to do so. Governments in England and Scotland have recommended extra shielding precautions for people at high risk. You are required to follow the restrictions in place for the general population in your nation. But all additional guidance for people at high risk is advisory only - meaning you can choose to only follow the guidance for the general population if you wish. 

We know that many people at higher risk are concerned about the rising cases of cornoavirus. As part of a coalition of 16 leading health charities, we have written to Health Secretary Matt Hancock and Chancellor Rishi Sunak calling for clear guidance, financial support and safe access to food, medicines and healthcare services to enable vulnerable people to stay safe as coronavirus cases continue to rise. Find out more about how we're speaking up for you here

England
New national restrictions came into effect from Thursday 5 November for four weeks, which state that people at high risk should stay home as much as possible, and not go to work. If you can't work from home, you may be eligible for Statutory Sick Pay (SSP) or Employment Support Allowance (ESA), and the Coronavirus Job Retention Scheme (furlough) has also been extended to support you, if you are eligible. You shouldn't go shopping, use transport (including private vehicles) or pick up your medicines - do this online instead or ask someone else to do this for you. You should still attend your medical appointments. Unlike during the first wave of shielding, you are now encouraged to go outside for exercise. You should try to stay at least 2 metres from those you live with - especially if they have coronavirus symptoms or have been asked to self-isolate because they've been contact with someone with coronavirus.

Some people have received emails from the government explaining what the new national restrictions mean for people at higher risk from coronavirus. Remember that your risk level can change - the best way to find out if the information you've been sent is right for you is to check your risk level on our website - our information is specific to people with Crohn's and Colitis. If government algorithms previously classed you as clinically extremely vulnerable, you may still get a letter, even if specialist guidance advises that you are not at high risk. If you feel that you are at high risk of complications but have not received a government letter, contact your healthcare professional and ask if they can add you to the Shielded Patients List. 

After the restrictions are set to end on Wednesday 2 December, there will no longer be national guidance to shield. England will return to  a tier system of local restrictions. You will not be asked to shield at any tier level - however people at high risk are advised to take some extra precautions as well as following the general guidance for their local tier. You can find out which tier your area is in by downloading the NHS Covid-19 app.

Scotland
Some people at high risk are advised to take extra precautions, depending on the alert level for their local area. See the Scottish Government website for more details.

Wales
The Welsh government are keeping a record of the people who were shielding before, so that these people can be contacted and updated if needed. Currently, you are able to follow the advice for the general population.

Northern Ireland
Shielding is not being resumed, but people at high risk are asked to be particularly careful in following the advice on limiting household contacts, social distancing, hand washing and wearing a face covering.

In all nations support will remain available from NHS volunteers and local councils after shielding has ended. You will still get priority for supermarket delivery slots, and you'll be able to access help with shopping, medication, phone calls and transport to medical appointments.

The pause in shielding means you’re able to go out more as long as there aren't local restrictions in place in your area. Find out more about what the pause in shielding means in our fact sheet:


Click the fact sheet to enlarge

Read the government shielding guidance for England
Read the government shielding guidance for Northern Ireland
Read the government shielding guidance for Scotland
Read the government shielding guidance for Wales

I've been asked to shield - what can I do?

If you are advised to shield, you should stay home as much as possible and try to stick to the following guidlines:

  • Work from home. If this isn't possible, you may be eligible for Statutory Sick Pay (SSP) or Employment Support Allowance (ESA)
  • Try to avoid close contact with people you live with, or people in your support bubble
  • You can go outside, but try to minimise contact with people you don't live with, and avoid busy areas
  • Use online shopping if you can, or ask others to collect and deliver shopping for you (friends and family, or NHS Volunteer Responders). If you cannot access food, your local authority can offer support.
  • If friends and family are not able to collect your medicines for you, then you will be eligible for free medicines delivery. Contact your pharmacy to arrange this

Check the letter you received, or with your IBD team, for further information. 

Am I still in the high risk group even though shielding has paused?

Yes - if you were to catch coronavirus, your risk of complications would still be high if you meet the criteria for being at high risk. Other restrictions have been introduced to reduce the spread of the virus in the community. If the levels of coronavirus in the community rise again, the government may recommend you go back to shielding.

To keep up to date with the latest local restrictions and government gudiance you could:

  • Download the contact tracing app (England and Wales) - the app will send you information about changes to local restrictions based on your postcode
  • Register to receive text message updates about shielding by testing your 10 digit CHI number to 07860 064525 (Scotland only). You can find your CHI number on the shielding letter you have received.

Returning to work

If you live in England, the government is advising that people at high risk do not go to work between Thursday 5 November and Wednesday 2 December, even if your workplace is COVID-secure. You may be eligible for Statutory Sick Pay (SSP) or Employment Support Allowance (ESA), and the furlough scheme has also been extended to support you, if you are eligible. From Wednesday 2 December, England will return to a local tier system of restrictions. In all tiers, people at high risk should continue to work from home. If this is not possible, you will be able to attend work again if your workplace is COVID-secure and your employer has taken precautions to keep you safe at work.

If you live in Wales, Scotland, or Northern Ireland, you are able to leave home for work if you can't work from home, but should take all possible precautions when doing so. You should only return to your workplace if social distancing measures can be followed.

If you are concerned about returning to work, we have created a letter of support to help you explain your risks to your employer. The government, in consultation with industry, has produced detailed guidance to help ensure workplaces are as safe as possible during the coronavirus pandemic, and we have information for employers about precautions to take when welcoming staff back to work. You should confirm with your employer that all necessary measures are being taken to keep you as safe as possible before you return to work. If you're concerned that your employer is not taking all practical steps to promote social distancing, see our information on returning to work for guidance on how you can report the issue. 

We know being able to go to work will come as a relief to many people with Crohn's and Colitis, but may also be concerning for others. As your risk of serious complications from coronavirus is high, we recommend that you continue to stay inside as much as you feel you can. If you decide to go out, follow strict social distancing and try to avoid being outside at busy times. See our blog for more tips about going outside during the pandemic. The mental health charity Mind have lots of information about protecting your wellbeing during the coronavirus pandemic, including tips on staying active at home.

Read our fact sheet for 5 key points to remember about the pause of shielding.

Not everyone with Crohn's or Colitis is in the high risk group. Your risk level can change depending on if you're in a flare and how long you've been on your medication. Remember to check our decision tree to see what the risk is to you. If you are no longer in the high risk (extremely clinically vulnerable) group, the above does not apply, and you should follow the guidance for your risk group. See our terminology table for a summary of what activities are recommended for the different risk groups:


Click the terminology table to enlarge


Will I recover from coronavirus if I'm at increased risk?

Most people who catch coronavirus, including those who take immunosuppressant medicines, make full recoveries. You might find our blog  from people with Crohn's and Colitis who caught COVID-19 reassuring.

Being in the high risk group does not mean you won't recover from coronavirus - it means your chances of getting serious complications are higher than the average person. It isn't possible to predict exactly who will have more serious symptoms as everyone is different. Even people with no health issues sometimes develop serious complications, while some people with increased risk have only mild symptoms.

The best thing you can do to decrease your risk of serious complications is to stay well, and keep taking your medicines to control your Crohn's or Colitis. If you have a fever it's very important to keep hydrated, as Crohn's and Colitis can increase your risk of dehydration.

If you do develop symptoms of coronavirus, you may have to make some changes to your Crohn's or Colitis medicine. Always discuss any changes with your IBD team.

There are a number of research studies investigating coronavirus and Crohn's and Colitis - you can find out about some of them here.

I am on azathioprine, and on the day that I tested positive for coronavirus I had just finished a course of prednisolone, but my experience was fairly mild. I had many of the symptoms, including a fever, cough and loss of taste and smell but it wasn’t anywhere near as bad as I imagined it would be. I had some lingering fatigue for probably 2 or 3 weeks after I recovered, but then got back to full health.

Marcus
Living with Colitis

Can I form a Christmas Bubble?

You are able to form a Christmas Bubble this fesive season, even if you are in the high risk group. It's up to you whether you feel comfortable seeing others, but we've put together some guidance to help you make your decision.


Is it safe to return to work?

Everyone, including those with no underlying health conditions, is exposed to a certain degree of risk from coronavirus. Absolute safety can never be guaranteed, and returning to work in the current climate is a very personal decision for individuals to make.

We have detailed information about deciding whether to return to work during the coronavirus pandemic on our working, benefits and finances page, which includes how to raise a concern if you're worried your employer isn't taking all possible precautions to ensure safety. It also includes guidance on people in your household returning to work if you are high risk. 


Will stopping my medicine reduce my risk?

Medicines that affect your immune system can stay in your body for up to three months after you stop taking them, so you will still be at risk.

If you stop taking your medicine, you may have a flare-up of your Crohn's or Colitis. A flare-up increases your risk of serious complications if you catch coronavirus, so it is important to keep taking your medicine, unless your IBD team advises you otherwise. 

If you develop any coronavirus or flu symptoms, you may have to delay taking your medicine until you feel better.  See our general guidance on medication if you have coronavirus symptoms. ​


Should my child go to school?

Schools in all UK nations are open and have social distancing and hygiene measures in place to help protect children and staff. All children are expected to attend, but whether or not fines will be imposed for non-attendance may depend on where you live, so check with your local authority or child's school.

Coronavirus can affect children, but it doesn't seem be as serious and most children will only get a mild form of the illness. Many children who were previously considered high risk (extremely clinically vulnerable / shielding) or moderate risk (clinically vulnerable) may no longer be considered to have a greater risk.

Check your child's risk.

It's natural to feel worried about sending your child back to school, and it may help to contact your child's IBD team to talk through your concerns. You could also contact your child's school to see what specific measures they're putting in place to protect your child. The government has also created some information on what parents need to know about sending their children back to pre-school, school or collages.
 
My child is high risk (extremely clinically vulnerable) and was previously shielding
Your child's healthcare team will assess whether your child is high risk, as the risk is now considered to be lower in children. If you live in Northern Ireland, Scotland or Wales, children who are high risk can attend school with everyone else (unless their healthcare team advises that they should not). If there's an outbreak in your area your child may be asked to shield again - and they may be unable to attend school until the local restictions are lifted. Follow the guidance from your local authority. If you live in England (from 5 Nov), children who are high risk should not attend school. If your child can't attend school, the school should support them to learn at home. From 2 Dec, children in all tiers in England can attend school unless their healthcare professional has told them not to.

My child is moderate risk (clinically vulnerable)
Children with Crohn's or Colitis are not likely to fall into the moderate risk group unless they have other health conditions that may increase their risk. Children with a moderate risk can attend school with everyone else.

My child lives with someone who is high risk (extremely clinically vulnerable) and was previously shielding
Your child can attend school with everyone else. It is not required for your child to distance themselves from the person at high risk, but it is your choice if you wish to take extra precautions. 

My child lives with someone who is moderate risk (clinically vulnerable)
Your child can attend school with everyone else.


Is it safe to go to university?

It's understandable to feel worried about going to university, but your university will be doing everything they can to keep you safe. They have to follow the latest government guidance for their local area, carry out risk assessments, and implement protective measures such as social distancing and increased cleaning. This probably means things will look a little different on campus - and you may have more virtual classes to limit the number of students on campus at any one time. If you are worried about attending in-person classes, it is best to have an open and honest conversation with your tutor about your concerns. We have a guide for Universities and Colleges about Crohn’s and Colitis you may wish to give to your tutor. Our Talking Toolkit can also help you find the words to explain your condition to them.

Each university will be making changes specific to their situation - so you should check their website to see how things will work for you when you return. Many provide information on what facilities will be open, how you can work virtually, and what support you can get if you have to self-isolate.

If your Crohn’s or Colitis has an impact on your ability to study, you may find it helpful to look into claiming Disabled Students Allowance. You may be eligible for assistance with purchasing items such as a laptop or printer to enable you to study from home if your condition makes travelling to classes difficult.

For extra support and information on managing uncertainty during this time, see Student Space.

The government also has guidance for university students if someone you live with develops coronavirus symptoms.


I have other risk factors which aren’t covered here

There are many factors which can affect a person’s risk of complications from coronavirus. Scientists continue to learn more about these risk factors as more research is conducted. We are only able to give information about risks specific to Crohn’s and Colitis, and are not able to say whether your risk category would change based on the below factors. It’s best to talk to your GP or healthcare team if you’re worried, and take all possible precautions if you feel you are at high risk. Our top tips for going outside may help you feel more confident about leaving home if you are at increased risk.

Other factors which have been found to increase a person’s risk are:

Other health conditions
People with certain serious health conditions have been found to be at a higher risk of coronavirus complications. These include:

  • Diabetes
  • Obesity
  • Chronic kidney disease
  • Dementia
  • Chronic pulmonary disease
  • High blood pressure
  • Stroke and chronic heart conditions

See the full NHS list of conditions which increase a person’s risk.

Age
Risk of coronavirus complications seems to increase with age, and is highest for people over 70 years old. The risks are very low for children under 18.

Ethnicity
Risk of coronavirus complications is higher for people from black, Asian and minority ethnic groups than for those from white ethnic groups.

Gender
Risk of coronavirus complications is higher for men than women.


Why is this guidance different from the government letters?

These risk categories are specific to Crohn's and Colitis. The shielding letters sent out by the government do not take into account individual conditions and the specific dosages of medicines. 

The risk categories were developed by the British Society of Gastroenterology (BSG) working with a large group of their members, nurses and doctors, who are specialists in Crohn's and Colitis. Many of your doctors and other members of your IBD team will be part of the society. These risk categories have been endorsed by the National Institute for Health and Care Excellence (NICE), who provide guidance, advice and information for health, public health and social care professionals.

The BSG is a UK professional membership body which consists of most of the Gastroenterology Specialists in the country, along with nurses and other health care professionals. The risk guidance was developed at the request of the government, which asked the BSG specialists to give a very detailed response to how risk should be categorised for IBD patients (as opposed to other patients) on immunosuppression medicines. Similar grids were produced by other specialists for their patient groups, who suffer from skin, joint and kidney problems and conditions affecting the nervous system.

The guidance is based on the available evidence at the time. The BSG continues to work with research groups nationally and internationally, which means there may be updates to the categories as scientific data emerges and we learn more about COVID-19.


Why did I receive a letter from the NHS if I'm not high risk?

Many people are confused about which risk group they fall into, due to the varied information available. A large number of people were contacted by the NHS telling them to practice shielding, but not everyone needed to. The NHS have released a statement explaining that "our aim has been to contact the most people as soon as possible, with the risk that we would also include a small number of individuals who do not need to use social shielding." Therefore you may have received a letter even if you don't need to shield. 

You may have received a letter because they were sent to a large number of patients who take immunosuppressants, regardless of what condition they have or what dosage they take. This precaution was taken to protect as many people as possible, but the dosages of immunosuppressants given to Crohn's and Colitis patients do not automatically put people at high risk. 

The list of who needs to shield hasn't been updated for everyone. Specialty advice continues to be that if you have Crohn's or Colitis, are well, and taking an immunosuppressant such as azathioprine, you should regard yourself to be in the Moderate Risk Group. There may be other factors that mean you are in the Higher Risk Group - check your risk level on our decision tree

If you still feel you are at a higher risk, you should continue to take all possible precautions to ensure your safety and speak to your IBD team.

As we went into lockdown, I received a text from the Government telling me I was high risk. I knew that this was related to my immunosuppressive medication, but it was still difficult to understand what this pandemic meant specifically for me. I later found out this message was sent to patients who take azathioprine, regardless of what condition they have or what dosage they take. 

The Government’s information can often be generic. The saving grace during this time has been charities, and specifically for me, Crohn’s & Colitis UK. Their information has been invaluable in working out what this pandemic means for me and my chronic disease.

Henry, age 27
DLiving with Colitis


I'm at high risk but didn't receive a letter from the NHS

If you feel you are at a high risk, you should continue to take all possible precautions to ensure your safety and speak to your IBD team or GP. Your GP may be able to add you to the Shielded Patients List so that you will be contacted with any updates if shielding resumes.

We know that some employers will only accept NHS letters as evidence that you are higher risk. We've created a letter of support you can use to help talk to your employer about why you're at risk.


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