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

27 March 2020

Urgent appeal: Our community needs our help more than ever before. If you can, please make an urgent donation now. Thank you.

Give support now
 

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?
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's the risk for under 18s?

The risk categories
Highest Risk (Extremely clinically vulnerable)
Moderate Risk (Clinically vulnerable)
Why is there a moderate risk group?
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 activites 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?
I have other risk factors which aren’t covered here


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.


Why is this guidance different from the government letters?

These risk cateogires 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 have been contacted by the NHS telling them to practice shielding, but not everyone will need 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. 

You may have received a second update letter about shielding recently, even if you are in the moderate group. This is because 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 to see if you do need to shield. 

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. You may still be able to register for support from the government if you did not receive a letter. Register your details at www.gov.uk/coronavirus-extremely-vulnerable.

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


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 isn't there a moderate risk group 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 - and they have all recovered. 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 in the shielding group 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. For your own safety, you are advised to follow the government’s advice on shielding for extremely clinically vulnerable people. This means you should not leave your house for any reason except to spend time outside. Aim to keep 2 metres (3 steps) away from people you live with, and minimise time spent in shared areas. See our shielding table for guidance on the changes for each UK devolved nation. 

The mental health charity Mind have lots of information about protecting your wellbeing during the coronavirus pandemic, including tips on staying active at home. 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

The government has set up a scheme to support people who are shielding and unable to leave the house for essential needs. You can register for this support at GOV.UK.

If you are worried about the government's advice on shielding for high risk children with Crohn's or Colitis, please contact your paediatric IBD team for extra support.


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.

Why is there a moderate risk group?

As everybody is now socially distancing, the ‘moderate risk’ group identifies the people with Crohn’s or Colitis who can safely be in contact with the people they live with and, if they live alone, perform essential self-care tasks such as food shopping. This is important for mental wellbeing over the coming weeks of social isolation. The dosages of immunosuppressants given to Crohn’s and Colitis patients are low enough to not pose a high risk of serious complications from COVID-19. 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.

What does 'strict' social distancing mean?

Unlike people in the high risk group, it is not necessary for people in the moderate group to shield. However, 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 and leaving your home, you should try stay home as much as possible, and take all possible precautions. As much as you can, try to shop for groceries online and do indoor exercise such as yoga. 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?

Guidance on shielding is slightly different depending on where you live. See our shielding table for what the advice is for each UK nation: 


Click the shielding table to enlarge

Guidance for England and Northern Ireland

The government has introduced a relaxation of shielding measures for high risk people, and announced that the shielding scheme in England and Northern Ireland will be paused after 31 July 2020. The Food and medicine boxes facilitated by the National Shielding Service will stop on 1 August 2020, but support will remain available from NHS volunteers and local councils after shielding has ended. People will keep their priority for supermarket delivery slots, and still be able to access help with shopping, medication, phone calls and transport to medical appointments.

Since June, people shielding have been allowed to spend time outdoors with one other person. From July 6 2020, the rules are relaxing further:

  • You will no longer need to socially distance from people you live with
  • You will be able to meet with up to five other people outdoors. This includes people from outside of your household as long as social distancing is maintained.
  • If you live alone, or are the only adult in your house, you will be able to create a “support bubble” with one other household of any size, in line with rules already in place for the wider population. Forming this support bubble means you effectively become one household  – you can act as if you all lived together. This means you can do things such as go round to their house, stay the night and travel together in private vehicles. But once you've formed your support bubble, you can't change who's in it

Read the full government announcement here

This new guidance does not mean you should stop shielding altogether. You should still stay home as much as possible, and do not visit inside spaces for shopping, work, or any other reason apart from visiting your "support bubble". 

If you are in the high risk (clinically extremely vulnerable) group in England or Northern Ireland, you should continue to shield until 31 July 2020. After this date, you should follow the guidance for people in the moderate group (clinically vulnerable). This means only leaving home when necessary, and following strict social distancing when out. This means that you should only return to your workplace in August if social distancing measures are able to be followed. 

If you are concerned about returning to work in August, 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. 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. 

Guidance for all UK nations

Since June, people shielding have been allowed to spend time outdoors with others. This does not mean that you should completely stop shielding yet. Shielding is still in place until your nation's end date. While you can now spend time outside with others, guidance around leaving the house for food shopping, work and non-essential contact remain the same. See the full government guidelines for more details on the shielding programme. Apart from spending time outside, you are recommended to not leave the house for any reason, including to go to work or shop for food. You should continue to rely on online deliveries or the government support scheme for essential supplies. 

We know being able to go outside will come as a relief to many people with Crohn's and Colitis who have not left their homes for many weeks, 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

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.


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 when you are shielding. 


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?

Some children in England will return to school on 1 June, and some children in Wales on 29 June. Schools in Scotland will open from 11 August, and schools in Northern Ireland will open in late August.

Not all children will be invited to return at the same time, and schools will be putting social distancing measures in place to help protect children and staff. You should consider your family situation when deciding whether or not to send your child back to school.

Check your child's risk.
 
My child is high risk (extremely clinically vulnerable) and is shielding
If your child is shielding they should not go back to school. Your child's 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. For the vast majority of children, COVID-19 is a mild illness - therefore children at moderate risk (clinically vulnerable) will likely benefit more from returning to school than staying at home. Schools will look very different and will have social distancing measures in place to help protect all children and staff from COVID-19. 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. No one will force you to send your child to school - you'll need to consider your child's own situation and do what you think is best for them.
 
My child lives with someone who is shielding due to being at high risk (extremely clinically vulnerable)
Your child should only return to school if strict social distancing measures are in place at their school and your child understands how to follow these instructions. This might not be possible for young children - so they should stay at home. Your child's school should support them to learn at home. If your child does return to school, they should continue to stay at least 2m away from the person who is shielding. 
 
My child lives with someone who is moderate risk (clinically vulnerable)
Your child can return to school with the rest of their year group. It is not required for your child to distance themselves from the person at moderate risk, but it is your choice if you wish to take extra precautions. 


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.


Since you are here...

We have a favour to askOur Helpline continues to provide support and guidance throughout this uncertain time. To help fund our vital services we need your support more than ever. Whatever you can give will make a real difference.

Give support now