16 March 2020
Update: Monday 16 March afternoon after Prime Minister's Statement to the House: see info box below about social distancing.
Based on developments over the last few days, it is likely that healthcare systems around the world will have to manage increasing numbers of patients with COVID-19.
Crohn's & Colitis UK has published guidance for inflammatory bowel disease patients.
The British Society of Gastroenterology (BSG) and the British Association of the Study of the Liver (BASL) (two respected professional societies in the UK) have released advice for healthcare professionals (HCPs). The advice it contains is useful for patients too.
Who is vulnerable?
Although the government has yet to define who is at higher risk of more serious disease ('vulnerable') and to publish an action plan for those people, the BSG/BASL advice highlights certain patient groups as being higher risk of more serious COVID-19.
BSG/BASL state that:
- people with IBD (inflammatory bowel disease) who take immunosuppressants for their Crohn’s disease or ulcerative colitis are not at increased risk of catching COVID-19, however they may be at extra risk of complications from the virus if they are infected.
- liver disease patients who have had a transplant, those with autoimmune hepatitis (AIH) on second line immunosuppression, and those with decompensated cirrhosis and/or alcoholic hepatitis patients are considered high risk for COVID-19.
- Patients with compensated cirrhosis are considered to be in the intermediate risk group for COVID-19.
As mentioned, our government hasn't yet issued guidance for vulnerable groups of people (or defined who those people might be) but we understand that some individuals wish to take steps themselves to reduce contact with others.
This is sometimes referred to as 'social distancing', and includes things like avoiding public places such as entertainment or sports events, reducing use of non-essential public transport or working from home.
Because the BSG/BASL information identifies potentially high-risk groups, you may find their information useful when discussing remote working with your employer or even generally when deciding whether you need to take additional precautions to reduce your risk of being infected with COVID-19.
Changes to hospital services
The BSG/BASL advice details steps that HCPs can take to reduce the risk of COVID-19 infection, both to HCPs themselves and patients with liver disease and/or IBD, especially those having endoscopic procedures.
Be a patient patient
As the pressure on hospitals increases due to COVID-19, you will find that your routine appointments and procedures are delayed, or where possible, conducted virtually (eg Skype or phone).
Checking patient lists and evaluating who is suitable for a virtual appointment and who is not, and setting up these appointments takes time, more time than usual, so please be patient with your doctors, nurses and hospitals. They are doing their best and are already over-stretched.
On top of that, there may be staff shortages due to sickness, imposed isolation and caring responsibilities. Your usual doctor may well be called to work in critical care to help look after seriously ill patients. They may have to prioritise urgent care over routine care. These are unprecedented times.
Please be patient with your own medical team if they don't get back to your question or query quickly. If you have an urgent medical concern, please use urgent care services.
Frontline medical staff are amazing. They are going to work everyday and putting themselves at higher risk of COVID-19 and deserve nothing but our utmost respect.
If you think you are having a cholangitis attack
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.
The charity, Anxiety UK, has resources and support available for people experiencing anxiety relating to COVID-19.
The PSC Support Facebook Group is a wonderful source of emotional support and information about PSC.
Questions about PSC and COVID-19
Please remember that your doctors may not have answers to specific COVID-19 questions - no one has. There is no clear data to say how underlying liver disease relates to the COVID-19 risk, and in particular, PSC. Researchers in Oxford are reviewing cases of people with COVID-19 and liver disease (including cirrhosis). This is in association with Public Heath England. We will of course publish the output once it becomes available.
Our resources below include information from the government and professional societies. We are updating it as new guidance comes along.