What you should expect from your care?
1. All people with liver disease should be diagnosed as early as possible. If you are at risk of preventable liver disease you should be offered preventative advice.
Your general practitioner (GP) should take a full medical history, including units of alcohol per day/week, your body mass index, (BMI) which shows whether you are a healthy weight, blood pressure, pulse rate, and note any long term
health conditions, such as high blood pressure, raised cholesterol or type 2 diabetes.
Your surgery (or health centre) should have a process (known as a ‘pathway’) that they follow if they suspect a patient may have liver disease. The first thing your GP will do is a liver blood test, which they may refer to as a Liver Function Test (LFT) or a non-invasive liver screen. This looks for ‘markers’ in the blood, such as proteins and chemicals, which indicate the liver might be damaged.
This should be at an appointment with a specialist gastroenterologist or hepatologist. You may require more than one visit and a number of tests to enable doctors to make a specific diagnosis. Each of these tests should be explained to you.
If the tests are invasive (for example, a liver biopsy or endoscopic procedure) you should be given enough time to fully discuss this as part of the consent process (when you agree to undergo these types of tests), prior to the
procedure taking place. Ideally, this will be in a quiet, safe area and should not be on the same day as the procedure. You should have an opportunity to discuss any concerns with both healthcare professionals and your loved ones, and also be given time to ask any questions you may have.
If you receive a diagnosis of liver disease, you should be given advice about how to slow down its progression, if this is possible.
3. You should be treated with respect and asked if you wish for your family to be involved (patient confidentiality will always be respected).
This means you should:
- be told that you have liver disease in a sensitive manner
- be able to discuss the cause of your liver disease in a way that is free from stigma and prejudice
- be given plenty of time to ask questions
- have your concerns listened to and your wishes respected
- be supported to manage your liver disease so that as far as possible, you and your family can continue to lead an independent life
- any likely side effects, plus advantages or disadvantages of any treatment options
- what your blood tests results and other test results mean.
4. If you are diagnosed with, or develop chronic (long term) liver disease or cirrhosis, your treatment should be tailored to your condition and situation.
This should include an explanation of:
• what cirrhosis is and how it is currently affecting your health
• what you can do to improve your condition and liver health
• what treatments are available for you and what the likely outcomes are
• any likely side effects, plus advantages or disadvantages of any treatment options
• what your blood tests results and other test results mean.
5. If you have decompensated cirrhosis or advanced liver disease, where the liver is not able to perform all of its functions, you should have additional information and care.
People with decompensated liver disease or cirrhosis often have serious symptoms and complications, such as portal hypertension (high blood pressure in the vein that carries blood from the gastrointestinal tract, gallbladder, pancreas and spleen to the liver), bleeding varices (internal veins), ascites (fluid retention in the tummy), muscle loss and encephalopathy (drowsiness and confusion).
This should include advice specific to your condition and situation on:
- the importance of good nutrition
- what food and drinks are good for you
- any foods or drinks you should avoid
- possible access to nutritional supplements if advised by your own doctor or a registered dietitian.
7. If necessary, you should have access to high quality, well-coordinated supportive care towards the end of your life
Many people survive liver disease and live full and long lives. Unfortunately this isn’t true for everyone. If you are reaching the final stages of life you should get the emotional, physical, practical and spiritual care that you need.
This care should be properly co-ordinated by a multi-disciplinary team.
Liver disease patient charter: what you should expect from your care
The information in the leaflet provides standards of care that have been agreed with the British Association for the Study of the Liver, the British Society of Gastroenterology and the British Liver Nurses’ AssociationDownload here