What to expect from your GP and consultant
It is extremely unlikely that your GP will diagnose your PSC. Your GP will refer you to a hospital consultant for tests, or your PSC might even be diagnosed as a result of other routine tests such as for Inflammatory Bowel Disease.
Once you have been seen by the consultant, s/he will write to your GP, confirm the diagnosis and detail any intended course of treatment and/or medications prescribed. On receipt of the results your GP should arrange to discuss the diagnosis with you. Your GP should follow the recommendations made by your consultant. You and your GP may wish to discuss finding the best consultant/hospital to deal with your PSC once you have the diagnosis.
PSC is rare and many GPs will be unfamiliar with the disease. The prevalence is about 1 in 10,000 in the USA and Northern Europe, but much lower in Southern Europe and Asia. Remember, it is not realistic to expect your GP to be an expert on PSC and you may be the only PSC patient at your GP practice! What you can do, is work with both your GP and consultant in learning how to manage PSC and any symptoms.
It is essential your PSC is monitored, even if you are asymptomatic. Therefore, expect to deal with both your GP and hospital for this ongoing monitoring (and you can choose which hospital).
As time passes it is likely you will develop a great understanding about PSC, the latest research and developments in therapies. As an informed patient, you will be able to work together with your GP and consultant to ensure you are getting the right clinical care for you.
There may be times when you need treatment outside normal surgery hours. Familiarise yourself with your GP’s out of hours procedures.
Your consultant will arrange to see you at regular intervals, every 3 or 6 months is not uncommon.
At each visit you will undergo blood tests to assess how active your disease is. Over time, the results build up a useful picture of how your PSC is behaving and if there is a change in the figures the consultant may order further tests such as imaging, MRI, ultrasound, ERCP or a liver biopsy or endoscopy. Depending on the results of these tests, further action may be taken this can range from changes to your medications or dosages to surgery.
Even if your PSC is relatively inactive the consultant is likely to order regular MRI scans to view the liver and look for changes in any bile duct strictures or to the liver texture and size .
If you also suffer with ulcerative colitis (UC) your consultant should arrange for you to undergo an annual colonoscopy with biopsies. This is not the most pleasant procedure but if you have UC you must insist on having one as your chances of developing cancer of the colon are significantly higher than the national average and early diagnosis improves considerably your chances of survival.
If you are seen at a PSC clinic, you may not always see the leading specialist in PSC but you can feel confident that the staff in this Department are following his/her guidelines.
Prepare yourself for your hospital appointment. List any changes you have noticed in your symptoms, any changes you have made 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. Take a list of ALL medications you are taking.
You may also wish to bring along results of previous blood tests.
Patients have a right to apply for access to their health records. Your hospital’s Records Department will have a set procedure that you can follow to gain access. There is normally a charge for this service. Your consultant will send your GP details of the outcomes of your appointment and any changes to medication. It is useful to have copies of your blood tests and other records about your health, and you should receive a copy of the summary of the appointment outcomes sent to your GP each time you see your consultant. If you don’t receive this, ask to be added to the list of recipients, as it doesn’t always happen automatically.
In terms of medication in the UK, you can expect your consultant to prescribe Ursodeoxycholic acid tablets (Urso). This alters the bile and so helps to alleviate blockages in the liver.
Over time, your condition may deteriorate to the point where your consultant starts to think about liver transplant for you. You would then be referred to one of the seven liver transplant units in the UK and begin the liver transplant assessment process.