It is essential you are monitored when you have PSC, even if you are asymptomatic (have no symptoms). Therefore, expect to be monitored on ongoing basis by your GP and PSC/IBD doctors over your lifetime.
As time passes, you’re likely to become an expert on your condition, and may feel able to work closely with your medical team to get the right care for you.
Familiarise yourself with your GP’s out of hours procedures. It’s funny how often the time you need to speak to someone is at 8am on a Sunday morning! Remember it is not realistic to expect any GP to have vast experience and knowledge about PSC. It can be very useful to have a letter from your PSC doctor which explains that you have PSC, what medication if any you are taking, and what medication you can/can’t have.
As with any disease, there may be times when you need to seek urgent medical advice (see when to contact your PSC doctor).
NHS urgent care near you
If you need help straight away, but it isn’t an emergency, call 111 (or one of these numbers if you’re in Northern Ireland).
If you suspect you have a bile duct infection, and need antibiotics urgently, print off our Bacterial Cholangitis leaflet to support decision-making.
Remember, PSC is rare so it helps everyone if you can show them evidence-based facts about PSC.
If you want to make an appointment to see your GP about a suspected bile duct infection, you should ask for an emergency appointment, not a routine one, and be clear: ask to see seen that day if possible because you think you have a bile duct infection.
What will my GP do?
PSC is rare and most GPs will be unfamiliar with the disease. It’s not realistic to expect your GP to be an expert on PSC - you may be the only PSC patient at your GP’s practice! What you can do, is work with both your GP and your PSC doctor to learn how to manage PSC and any symptoms.
Decide on a hospital
Once you know you have PSC, you may wish to consider finding a PSC specialist. You are entitled to ask for a referral for specialist treatment on the NHS. Generally speaking, if your PSC is asymptomatic (has no symptoms) and stable, you can be seen in a general clinic 58. If your PSC is complex or symptomatic, talk to your doctor about being referred to a hospital with PSC expertise /conducts PSC research. However, whether you will get the referral depends on what your GP feels is clinically necessary in your case.
The BSG/UK-PSC Guidelines58 recommend that ‘patients with symptomatic, evolving or complex disease should be referred for expert multidisciplinary assessment.'
If there is doubt about your PSC diagnosis, we recommend referral for specialist opinion.
Understand your plan of care
Once you have been seen by your PSC doctor, they will write to your GP, confirm your PSC diagnosis and detail any intended course of treatment and/or medications prescribed. Your GP should follow the recommendations made by your PSC doctor.
Anxiety and depression
PSC Support operates a dedicated helpline (01235 25 35 45) to provide emotional support for people with PSC. If you feel you need more formal support, speak to your doctor about accessing psychological services. Once you have been referred to a psychological service, you will be seen as soon as possible depending on the resources available in your area. If you find your problems are getting worse or are concerned about your wait, you should speak to your GP.
Who is my PSC doctor?
Your PSC doctor might be a hepatologist or a gastroenterologist. Often, PSC is diagnosed following routine IBD tests, and many people with PSC continue to see their gastroenterologist for their IBD (if they have it) and also for their PSC. If your PSC is asymptomatic and stable, this is a sensible choice. If your symptoms are progressing, then a PSC specialist might be a more suitable option. If you do need to see a PSC specialist, there is no reason not to continue to see your IBD doctor for IBD (if you have IBD). Colonoscopies at your local hospital are easier logistically!
How often should I see my PSC doctor?
Your PSC doctor will arrange to see you at regular intervals, depending on your individual needs. Some asymptomatic patients see their PSC doctor every 12 months (with a blood test at their GP’s every 6 months), while others require more frequent monitoring.
If you are concerned about a change or development in your condition before your next scheduled appointment, get in touch with your PSC doctor. It can be helpful to keep track with a diary of how you feel and function, and do take notice if friends and family notice something you haven’t!
How can I get in touch with my PSC doctor?
Most hospitals provide details of how to get in touch with their service in their letters to you. However, these letters can take weeks to arrive. We suggest you ask your doctor during your appointment how to contact them if you are concerned about symptoms once at home.
What kind of monitoring will I have?
It’s a good idea to prepare yourself for your hospital appointment to ensure you get the most out of it.
List any changes you have noticed in your symptoms, any changes you have had to make to your way of life and plan any questions you want to ask prior to your appointment and take a pen and paper to take a note of the answers.