PSC and COVID-19

Patient Resources

PSC and COVID-19

COVID-19 is a disease caused by a new virus called SARS-CoV-2. With the number of cases rising, and daily briefings from the Prime Minister, we understand people may be worried or confused about what they need to do, particularly when they live with multiple health conditions.

We've put together a summary which we are updating regularly, covering the most common issues raised by people with PSC about COVID-19.

For the most up-to-date information, please visit your government's website.

Quick Links

COVID-19 Information

For healthcare professionals

If patients are unwell, they should access medical care as they would have done before the crisis.

Patient Toolkit

We have produced a patient toolkit with LIVErNORTH to help patients keep track of symptoms between appointment and have all the information to hand for appointments and telephone consultations.

Your Contact Details

Please let your patient know how they can contact you or your team in the event of a concern about their PSC or IBD.

Reassuring Patients

Please see the question on this page about reassuring news from Professor Douglas Thorburn and Professor Ansgar Lohse.

Registries

Liver

Researchers at the University of Oxford have established a universal and collaborative registry project to collect data on patients with liver disease at any stage or liver transplants who develop laboratory-confirmed COVID-19.

COVID-HEP Registry

Inflammatory Bowel Disease

International IBD specialists have established an inflammatory bowel disease (IBD) registry and are encouraging IBD clinicians worldwide to report ALL cases of COVID-19 in their IBD patients, regardless of severity (including asymptomatic patients detected through public health screening).

SECURE-IBD Registry

Rare Liver Diseases

A dedicated R-LIVER COVID-19 registry has been set up by the ERN- RARE LIVER (European Reference Network for Rare Liver Disease). It focuses on adult and paediatric patients with rare liver disease and patients after liver transplantation with documented COVID-19 infection across Europe. Members of the ERN- REARE LIVER are asked to register their COVID-19 patients.

Expert Medical Consensus

BSG/BASL Guidance

Most PSC patients also have IBD. BSG/BASL has issued guidance on high risk liver disease patients and high risk IBD patients. This includes information about classes of medication.

BSG/BASL guidance on COVID-19 and liver disease/IBD

Updated BSG/BASL/NHSBT/BST guidance on classification of who is most vulnerable (July 2020)

ESCMID-EASL Position Paper on Caring for Liver Disease Patients During COVID-19

ESCMID-EASL Position Paper

Lay Summary (pdf)

From March 2020:

Help minimise A&E visits during the COVID-19 outbreak

People with PSC are prone to bile duct infections, which untreated, can quickly lead to sepsis. Under normal circumstances, patients would be directed to Emergency Departments (A&E). However, they are likely to be overrun and attendance may increase exposure to the virus. Our intention is to keep PSC patients away from A&E as safely as possible when it is reasonable to do so.

We have worked with UK-PSC, our Expert Panel and GPs, and we are asking people with PSC to contact their GP now to ask for:

A course of antibiotics to keep at home (such as ciprofloxacin, co-amoxiclav or co-trimoxazole). The standard duration for a course of antibiotics for acute cholangitis in PSC is 2-3 weeks.
A blood test request to be kept on the system for the patient, to include:
- Full blood count (FBC)
- Urea and electrolytes (U&E)
- Liver blood tests (LFTs)

In the event of suspected cholangitis, PSC patients will start their antibiotics (with prior consultation with GP or specialist in some cases). If the patient does not start to improve within 48 hours of starting them, they are advised to contact NHS111 for advice. If it is cholangitis that is resistant to antibiotics, COVID-19 or something else, they will need medical attention.

Most GPs are embracing this initiative and supporting patients accordingly, but some may need a little prompting or support from specialists.

Also see our acute cholangitis information for information on the signs, symptoms and treatment.

If at any point patients have concerns about their health, we are advising them to seek medical advice. We understand that some PSC patients are avoiding contacting their liver units or urgent care. We are urging them to ALWAYS err on the side of caution and make contact and that despite COVID-19, hospitals are still treating people with urgent underlying healthcare needs, and it is important that they seek medical attention when needed.

Acute Cholangitis - planning ahead

If you are unwell, please access medical care as you would have done before the crisis. NHS doctors are still there for you. Please ensure you have a PSC Alert Card (available to download for free).

'A true lifesaver! I had cause to use my card recently during an acute Cholangitis attack which had progressed to Sepsis. It gave me clarity and helped me to explain my concerns to the triage nurse to speed up admission through A&E'. Matthew (PSC)

From March 2020:

We have taken advice from UK-PSC and our Expert Panel and we advise that you take steps now to ensure you have access to treatment for acute cholangitis over the coming weeks so that you can avoid A&E if possible in the first instance. There is a real danger that A&E departments will be overrun as well as the increased risk of COVID-19 infection while in A&E.

We are asking people with PSC to contact their GP now to ask for:

A course of antibiotics to keep at home (such as ciprofloxacin, co-amoxiclav or co-trimoxazole). The standard duration for a course of antibiotics for acute cholangitis in PSC is 2-3 weeks.
A blood test request to be kept on the system for you, to include:
- Full blood count (FBC)
- Urea and electrolytes (U&E)
- Liver blood tests (LFTs)

This may not be possible for all areas. Please let us know if you have problems arranging this or contact your consultant for advice.

Most GPs are embracing this initiative and supporting patients accordingly, but some may need a little prompting or support from specialists.

We suggest the best way to make these arrangements is to ask for a telephone consultation with your GP. Understandably, GPs are under a great deal of pressure at the moment, so there may be a delay before you get a response.

It is also worth having a thermometer at home right now.

If you think you have cholangitis

If you get symptoms of cholangitis, start your antibiotics. (Your GP may advise you to arrange a telephone consultation with them before you start taking them). If you do not start to improve within 48 hours of starting them, contact NHS111 for advice. If it is cholangitis that is resistant to antibiotics, COVID-19 or something else, you will need medical attention.

If at any point you have concerns about your health, please seek medical advice. We understand that some PSC patients are avoiding contacting their liver units or urgent care. ALWAYS err on the side of caution and make contact. Despite COVID-19, hospitals are still treating people with urgent underlying healthcare needs, and it is important that you seek medical attention when you need it.

Post transplant patients

The principle, if you have post transplant cholangitis, is the same, but it is important that other causes are excluded. If you are post transplant and think you have cholangitis, contact your transplant unit first as would be normal practice now. You can then set up support from your GP following their advice.

Also see our acute cholangitis information for information on the signs, symptoms and treatment.

What patients are saying...

"Thanks so much for thinking about this and for getting the advice and circulating the message. We’re SO lucky to have you doing so much on our behalf. Really appreciate it so much."

"I spoke to my GP this morning and he was very happy to do this and put the prescription up straight away."

"Great result here too - did a request for drugs and blood card using e-consult and both done a few hours later. Feels so much better to be prepared."

"Spoke to my Gp this morning and he has sent a prescription for co amoxiclav to my pharmacy, blood form ready at the desk when needed. Also reassured me he is available on the phone when needed."

"Spoke to my GP this morning and he sent a prescription for Co amoxiclav to my pharmacy as well. He thought it was a good idea and if I have any more questions, to just contact him."

What is COVID-19

What is COVID-19?

COVID19 is a disease caused by a new virus that is readily spread, and part of a family of viruses that cause colds and pneumonias.

Most people exposed to the virus will get some kind of illness because COVID-19 is new, and it is the first time our immune systems have interacted with the virus. Some people, e.g. those who are older (over 70) may be particularly prone to more serious illness if they get COVID-19 because of other illnesses and lifestyle factors such as heart disease or smoking.

We are learning more every day

Keep in mind that because this is a new virus, what is known about the virus now might change in the future. Doctors and researchers are setting up registries to record information about people who get COVID-19, and they will use this data to understand more about who gets the illness and why, and what happens to them. This will help government make more effective plans to protect the public from the virus, and will help researchers discover effective treatments and vaccines.

Have I Got COVID-19?

Seek clinical advice using the NHS 111 online coronavirus service or call NHS111 if you don’t have internet access. If you are shielding, let them know.

It is a good idea to let your specialist know if you do have COVID-19 so they can update the important liver and inflammatory bowel disease (IBD) registries.

COVID-19 Symptom Tracker

Scientists at King's College Hospital and Guys and St Thomas’ Hospitals have developed an app to see how the virus is spreading and to understand how COVID-19 is affecting us all in real time.

The aim of the app is to help slow the outbreak, by helping researchers identify:

How fast the virus is spreading in your area
High-risk areas in the country
Who is most at risk, by better understanding symptoms linked to underlying health conditions

You answer some quick questions each day (takes about a minute) about how you're feeling, whether you think you have COVID-19 or not.

There are now nearly two and a half million users reporting how they are feeling each day and the researchers are producing regular reports about what they are learning.

Am I clinically extremely vulnerable (CEV)?

To reduce the rate that the virus spreads, and to protect those at highest risk of developing serious COVID-19, the UK government has provided guidance for the general public and people with certain healthcare conditions.

Everyone with PSC is considered at least 'at risk' or 'clinically vulnerable' because PSC is a chronic liver disease.

This means we should all strictly follow current social distancing guidance at the very minimum.

Some people with PSC are considered 'clinically extremely vulnerable', and are at highest risk of severe coronavirus.

Who is clinically extremely vulnerable (CEV)?

Not everyone with PSC is clinically extremely vulnerable.

As most people with PSC also have inflammatory bowel disease (IBD), both your liver and bowel should be considered when deciding whether you are vulnerable or extremely vulnerable. Any other conditions you have should also be considered, including autoimmune hepatitis (AIH) if you have it.

The definition of people who are 'clinically extremely vulnerable' includes people who:

have had a liver transplant
are on the waiting list for a liver transplant
are taking certain medicines for IBD
are taking immunosuppressants
have severe bowel disease
have decompensated cirrhosis or ascites, hepatic encephalopathy, liver cancer, variceal bleed or synthetic liver dysfunction (now or in the last 12 months)

Professional advice about people with liver disease can be found here.

Decisions about IBD are quite complicated but there is excellent guidance here.

Note: You may have other conditions that mean you are extremely clinically vulnerable. Always check the relevant guidance for each condition.

Government guidance for people who are classed as extremely vulnerable

Note that each nation is handling its response to COVID-19 slightly differently:

I'm not classed as clinically 'extremely' vulnerable - what should I do?

While not everyone with PSC is classed by the government as 'clinically extremely vulnerable', people with PSC are classed as 'clinically vulnerable'.

This means you should take any guidance to protect yourself very seriously and follow it. You should continue to take particular care to minimise contact with others outside your household.

Government guidance is constantly being updated so please refer to the government information about social distancing to understand what this means for you and what you should do:

Shielding anyway

You may of course, choose to shield to protect yourself further. Many people, especially those with decompensated cirrhosis (where the liver is damaged and is no longer functioning properly), are doing this.

This isn't forever

These measures are temporary. They will not last forever. Please keep in contact with your specialists if you are concerned about PSC, AIH or IBD issues. PSC Support is holding regular half hour Drop-Ins (PSC Connect) using video calls. Details published daily in our Facebook group. We're in this together.

Do I have to go to work?

COVID-19 vaccines

England

Northern Ireland

Scotland

Wales

Resources for PSC Patients

Liver Disease Patient Toolkit

Toolkit

We have produced a toolkit with LIVErNORTH to help liver patients keep track of symptoms and make the most out of their medical appointments during COVID-19.

Changes to Healthcare

The situation is improving in the NHS but COVID-19 is still there, so a return to normal is not yet possible. To reduce your exposure to COVID-19, the NHS is moving to telephone reviews for some appointments instead of patients attending in person. You may also find that some of your appointments and procedures are delayed or that clinics are held in different hospitals.

Your Records

Keeping a record of your symptoms, general wellbeing and any changes to medication will ensure that you have all the necessary information relating to your condition available during an appointment or a telephone review.

Resources

The toolkit also contains some handy resources for information on COVID-19, getting support and wellbeing.

Print the Toolkit

The toolkit is designed to be a paper copy so you can jot down how you are doing and keep it handy.

Download Toolkit

Questions for your doctor

Plan in advance which PSC-related questions you would like to ask your doctor at your next appointment.

Questions to ask your doctor

Reassuring Information for Liver Disease Patients (updated 10 June 2020)

The Rare Liver ERN (European Reference Network for Rare Liver) is a network of rare liver disease expert hospitals in Europe.

June 2020: Professor Ansgar Lohse, ERN RARE-LIVER Coordinator and specialist in both hepatology and in infectious diseases, has produced a video message to help patients understand the context of emerging registry data on the impact of COVID-19 on liver disease patients.

Watch video

March 2020: Professor Ansgar Lohse is the clinical lead for the whole Rare Liver ERN. He has written a personal letter to patients which puts the COVID-19 risks into perspective and emphasises the need for anyone on any medication for liver disease, especially those with AIH and post-transplant, to continue taking their medication as normal:

Information for all patients with rare liver diseases (and, in case of children, their parents)

Corona is not only dominating the media, Corona is increasingly in the mind of many of you worrying about vulnerability as a liver disease patient. Therefore, I would like to provide some information and guidance for the coming weeks and months.

I am writing to you not only as coordinator of the ERN RARE LIVER, but also as a specialist both in Hepatology and in infectious diseases. The scientific community knows very little about this disease; how should it with a new virus and a new disease? Nonetheless, we now have some experience on which we can base some important advice.

First and foremost:

Continue taking your immunosuppressive drugs in unchanged doses!

As a liver disease patient, do not reduce your treatment and do not change the dose. Right now it is clearly much more dangerous to reduce your treatment than to continue it unchanged. A flare of autoimmune liver disease, or a rejection episode of your transplant, is much more dangerous!

Yes, there is danger, but the danger is much smaller than one would think from watching the news, and in particular, it is much smaller to you liver disease patients, and patients taking immunosuppression, than one would think. Why can I say this? Because by now we have some data, mainly from China and from Italy, but also from other places, that give us genuine encouragement and reassurance. These data suggest that:

The mortality rate is much lower than reported, because there are far more additional undiagnosed cases than those in the official figures,

The risk that in particular, children and young adults would suffer a severe disease when infected is very low indeed, and

The risk for patients receiving immunosuppression and for liver transplant recipients does not seem to be increased.

Who is in real danger of this new virus?

The elderly, especially elderly men
Patients with chronic airway disease, such as asthmatics
And probably diabetics

If you belong to one of these risk groups and/or are elderly (older than 70), then you should be extra careful, you should strictly avoid contact with anybody who has symptoms of a respiratory infection, you should reduce your direct social contact, you should avoid direct physical contact, you should wash your hands whenever you have been in public places and touched things that others have recently touched before you. And, of course, please follow the rules and recommendations in your country and region, as these may differ locally depending on the local epidemiological situation, which changes sometimes quite rapidly.

What do we know?

This new virus, called SARS-CoV2, because it is a variant of the SARS virus, is new, but not entirely new. Other Corona viruses have been around us for many years, usually causing mild respiratory infections, but both SARS and the MERS virus (Middle Eastern Respiratory Syndrome virus) have caused severe outbreaks in past years. Why is there this enormous worry and activity because of the new virus? Two key reasons:

We know very little about this new virus, as mentioned, how should we with a new virus; how should anyone?
There is probably no immunity to this virus in the community, because it is new

It is this latter point which explains why the virus can spread around the world and it makes it so difficult to slow the spread, and probably impossible to stop the spread. Most experts now agree that the virus is here to stay, and if we manage to slow the spread, it will still remain in the community, and can come back again and again. We may be wrong, and we might achieve disappearance, as was apparently achieved with SARS, but this is unlikely. Therefore, we all, you all, need to know how to deal with this new situation.

How can you protect yourself?

Indeed, it is clearly much more dangerous now to reduce your treatment, than to continue it unchanged. A flare of autoimmune liver disease, or a rejection episode of your transplant, is much more likely to result in severe disease or even death, than this new virus. So, please, please continue your drugs! Indeed, it might even be that disease course in patients on immunosuppression could be milder because of the drugs, but that at this stage is more speculation than facts, and we need to stay with the facts!! There is yet one additional point: a flare of the disease or a rejection episode in itself is an additional health risk making you more vulnerable – so please avoid this.

What else can you do to protect yourself? Many patients are asking about ways to strengthen their immune system, about vitamins, zink, herbal drugs etc. I am afraid none of this will work. However, a healthy lifestyle is now at least as important as it is at other times: try to get some fresh air and some exercise every day – even quarantined persons can go for a walk, they just need to avoid close contact with others. Eat regularly, with the usual recommendations for a mixed and varied healthy diet – and try to not always think about this virus and this risk, but live your life, despite the many restrictions. For most of you, the risk from this virus is indeed very, very small – and most of you engage regularly in other behaviour which is much more risky.

Professor Douglas Thorburn reassured us this morning (23 March 2020) that the information coming from doctors in Italy does not indicate that many liver disease patients have been severely affected by COVID-19.

He also said that the IGNARC (Intensive Care National Audit Research Centre) data from the first 200 intensive care unit cases in England indicate none had liver failure, which suggests so far:

the virus may cause liver function abnormalities but hasn’t been demonstrated to cause liver failure.
no one with pre-existing disease have developed liver failure with COVID-19.
there have been no patients with pre-existing liver failure admitted to intensive care units.

Yours

Ansgar W. Lohse
Coordinator of the ERN RARE LIVER

Ask the Expert

PSC Connect - Our Virtual 'Drop-Ins'

During these unprecedented times with many of us staying at home to distance ourselves from others, we believe it is so important to stay connected with the outside world.

Come and join us for our virtual meet-ups. A chance to connect, chat and 'meet' others.

To find the Drop-In details, go to the Topics section of the Facebook group and find PSC Connect Drop-Ins.

We're really enjoying 'meeting' you and sharing tips on how we are navigating this change in our lives (and seeing everyone's pets!). Don't be shy!

What patients are saying

"I'd like to thank Martine and Maxine for organising the daily video chats we've been having, it's been really nice seeing some new and some familiar faces for the first time!
We've been busy putting the worlds to rights in our chats, having pet show and tells and enjoying some laughter!
Honestly, don't be scared, come join us for the next chat, it's a break from everything and a chance to interact with people many of which we've only chatted to in this group with words!
Say as much or as little as you like, I'm extremely introverted (and socially awkward) but I've managed to string a few sentences together!
They're not long chats, but enough to break up the day and maybe it might be something that you look forward to!"

Changes to Hospital Services

If you have any urgent concerns about your health, know that hospitals are open for emergencies and want you to contact emergency services when you need them.

Changes to hospital services

It is heartening to hear in today's coronavirus briefing from the Health Secretary that we are beginning to get on top of the virus and see the number of infections falling. Numbers of people in hospital with COVID-19 have also been falling.

Now we are learning that NHS is beginning to restart services. What does this mean for people with PSC and what is the situation right now?

Consultant Hepatologist, Dr James Ferguson (University Hospitals Birmingham and PSC Support Expert Panel) gave us a reassuring update this afternoon (1st May 2020).

The situation is much improved in the NHS but COVID is still there, so a return to normal is not yet possible. However we are all here for you and please access our services.

The majority of out-patient appointments will be virtual in nature to help with social distancing and to avoid travel and risk for patients. Most services are setting up blood hubs outside acute sites to facilitate this.
Many of your doctors may have been redeployed to other clinical areas during the crisis but they should be slowly returning to their normal clinical roles.
Radiology will become more available over time but many scans may need to be rescheduled.
Surveillance colonoscopy may continue to be rescheduled for some time.
Transplantation is still happening but at reduced numbers.
Finally if you are unwell, please access medical care as you would have done before the crisis.
Take care all we are still here for you

Your ideas

If you have ideas or thoughts on how healthcare should be re-organised, now or after COVID-19, please drop us a line or give us a ring in confidence on 01235 253545. All calls/extensions come through to Maxine or Martine, or you can leave a message and we'll call you back.

We're incredibly busy, but we want to hear from you and will get back to you.

Expert Consensus on the Care of Liver Disease Patients

Wearing Masks

How Long Will a Treatment or Vaccine Take? (updated 30 Nov 2020)

Researchers are developing potential vaccines right now. Vaccine development can take 12-18 months. However, a recent article by a scientists tells us that we have reason to be hopeful.

A treatment, however, is likely to be made available a lot sooner. In times of public health emergency, regulatory authorities implement special fast tracking procedures to allow drugs to be approved far far quicker than normal. Researchers are investigating existing drugs to see if they can help patients with COVID-19.

See COVID-19 and vaccines

Managing Anxiety and Stress

It's natural to feel apprehensive or anxious, especially if you are actively monitoring COVID-19 news to stay informed. Equally, being in isolation can be stressful.

Try to focus on the things you can control, such as your behaviour, who you speak to and who you get information from. Every Mind Matters provides simple tips and advice to start taking better care of your mental health.

The charity, Anxiety UK, has resources and support available for people experiencing anxiety relating to COVID-19.

MIND provides advice and support to empower anyone experiencing a mental health problem.

The PSC Support Facebook Group is a wonderful source of emotional support and information about PSC.

PSC Support is holding daily half hour Drop-Ins (PSC Connect) using video calls. Details published daily in our Facebook group. We're in this together!

If you are still struggling after several weeks and it is affecting your daily life, please contact NHS 111 online. If you have no internet access, you should call NHS 111.

See PSC Support: Depression and Anxiety

Your concerns

If you have any issues, problems or concerns with delays or any on aspect of your care, please let us know. Similarly, if COVID-19 has negatively impacted your life in other ways, maybe financially, socially, or simply getting food, please get in touch. Knowing what is really happening to you helps PSC Support build up a strong case for ensuring the right healthcare services and support are there for you.

Please don't suffer, worry or fume in silence.

Your tips

Equally, COVID-19 is bringing out the best in people and we are thankful to everyone who wrote into us to share their tips and advice on living well in isolation. How are you handling the lock down? We're sharing tips from people with PSC.

Welfare Benefits and Help

Returning to work (August 2020)

Liver Transplantation and COVID-19

What is the impact of COVID-19 on transplantation?

You may have heard that fewer liver transplants are taking place than usual because of the COVID-19 pandemic. We understand that this is a very worrying time for those who are waiting for a liver transplant.

The safety of organ donation and transplantation is a priority for NHS Blood and Transplantation (NHSBT), which is working to continue organ donation where possible, so transplants can go ahead if appropriate.

Professor Douglas Thorburn, PSC Support Expert Panel and Chair of the Liver Advisory Group for NHS Blood and Transplant, said, "The coronavirus outbreak is a very worrying time for everyone. This anxiety is even more acute for those patients and their families who are anxiously waiting for a liver transplant. The outbreak means that many hospital and intensive care unit beds across the United Kingdom are now being used to care for those affected by this pandemic.

NHS Blood and Transplant along with the medical team and organ advisory group doctors, have agreed that the donor acceptance criteria be reduced on a temporary basis. This has resulted in a reduction in the numbers of available organs.

It is important to highlight that liver transplant centres remain open and urgent transplants are still taking place.

Transplant recipients are considered to be an extremely high-risk group should they develop coronavirus. Hence, the balance of waiting until the risk of getting coronavirus is reduced versus the risk of undergoing transplantation now needs to be weighed up for individual patients.

It is essential that the public help relieve the pressure on our NHS by following the Government’s guidelines on social distancing and shielding to reduce the spread of Coronavirus so that normal transplant services can be resumed as soon as possible."

Is it safe to have a liver transplant at the moment?

Are liver transplants going ahead at the moment? (Updated 11 January 2021)

11 January 2021
As you are aware, COVID-19 is spreading rapidly across the UK. As a result there are now severe restrictions on the number of liver transplants that can be carried out.

The Clinical Directors from the seven UK liver transplant centres are working together to ensure that transplants can go ahead whenever possible. Please be reassured that your care is their top priority and this situation is under constant review.

If you have any concerns about your health during this time, please make sure to contact your team in the usual way. If you’re looking for further support, please don’t hesitate to reach out to us:

Get support

I am on the waiting list for a transplant. What if my condition deteriorates?

Please contact your transplant unit if you have questions about your transplant. If you think you may have COVID-19, let your transplant team know and seek medical advice using the NHS 111 online coronavirus service or call NHS 111 if you don’t have internet access. Do this as soon as you get symptoms.

It's important to let your transplant team know if you think your condition is deteriorating or you are worried about any aspect of your health.

In any emergency, call 999 if you are seriously ill.

See also NHSBT FAQs about transplantation in the UK