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

15 July 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
What do the new shielding guidelines mean for me?
Will I recover from coronavirus if I'm at increased risk?
What activities can I do depending on my risk level?
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 and this information will also be sent to the IBD team that you select in the survey. This will help your IBD team to better support you during this difficult time as they'll be able to contact you directly with the advice that's most relevant to you. Find out more about the COVID-19 UK IBD Tool.


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.

 


What do the new shielding guidelines mean for me?

The UK governments have introduced a relaxation of shielding measures for high risk people, although you may be asked to shield again if there's an outbreak in your local area. The shielding scheme in England, Northern Ireland and Scotland paused from 31 July 2020, and from 16 August 2020 in Wales. The free food boxes will stop after these dates, but 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.

Find out more about what the pause in shielding means in our fact sheet:


Click the fact sheet to enlarge


The pause in shielding means you’re able to go out to more places and see more people:

  • you can go to work, as long as the workplace is COVID-secure – but carry on working from home if you can. We have information for employers about precautions to take when welcoming staff back to work 
  • children who are high risk can go back to school (when the rest of their class goes back)
  • you can go outside to buy food, to places of worship and for exercise – keeping 2 metres away wherever possible

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

While the national shielding programme has paused, there may still be individual circumstances where you're advised to shield, such as if you have upcoming surgery or if there's a local outbreak in your area. Follow the advice of your IBD team if they tell you to shield.

Will I still be in the high risk group after August?

Yes - if you were to catch coronavirus, your risk of complications would still be high. The shielding measures are being relaxed because now that the levels of coronavirus in the community have reduced, it is less likely that you will come into contact with someone with the virus. If the levels of coronavirus in the community rise again, the government may recommend you go back to shielding. 

When shielding is paused

After shielding is paused in your nation, high risk (clinically extremely vulnerable) people should follow the guidance for people in the moderate group (clinically vulnerable). This means you are able to leave your 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 resume normal life will come as a relief to many people with Crohn's and Colitis, but may also be concerning for others. It is your decision whether you wish to take advantage of the new guidelines, taking into account your own physical as well as mental health. 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 and this article from two high risk 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.


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 back to school?

Schools in Scotland will fully open from 11 August, and from September in England and Wales. Schools in Northern Ireland will have a phased return from late August.

Schools will be putting social distancing and hygiene measures in place to help protect children and staff. When schools fully open all children will be 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. Even if your child is high risk, they can return to 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 your child can't attend school, the school should support them to learn at home.
 
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 return to school with everyone else.
 
My child lives with someone who is high risk (extremely clinically vulnerable) and was previously shielding
Your child can return to 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. If there's an outbreak in your area you should follow guidance about attending school from your local authority. 
 
My child lives with someone who is moderate risk (clinically vulnerable)
Your child can return to 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.


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.

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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