All people with liver disease deserve to:

• be diagnosed as early as possible
• be treated with respect
• have their condition and treatment explained in a way they understand
• know that all their personal information is kept confidential
• have access to the best standard of medical care – regardless of where they live, lifestyle, and type of liver disease
• feel empowered and able to ask about all aspects of their care.

It is important that you feel informed and involved so you can make knowledgeable decisions about 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.

You may be at risk of preventable liver disease if you:

• are overweight or obese (BMI of 25kg/m2 and higher)
• misuse alcohol or regularly drink too much
• have hepatitis B virus infection
• have hepatitis C virus infection
• have type 2 diabetes.

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.

If this test is abnormal, it is important that your GP investigates the reason for this, using the national guidelines from NICE and the British Society of Gastroenterology.

For most people this will include testing for fibrosis (liver scarring). They may use specialised blood tests to assess this (such as Elf or Fib4) or they may use a quick, non-invasive scan that is similar to an ultrasound. The most common name for this type of scan is a Fibroscan, and it tells your doctor how ‘stiff’ your liver is (this is important because healthy liver tissue is soft).

Find out more:

Tests for liver disease

Resources for healthcare professionals

Your GP should also give you advice about how to reduce your risk of developing liver disease – for example by eating a healthy diet, losing weight, increasing the amount of exercise you do and reducing your alcohol intake to no more than the Government’s recommended amount of 14 units per week (this applies to both men and women and is the equivalent of five pints of lager or six large glasses of wine).

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2 Your diagnosis and treatment options should be clearly explained to you. 

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.

Find out more: Tests for liver disease

If you receive a diagnosis of liver disease, you should be given advice about how to slow down its progression, if this is possible.

This should include:

Advice about healthy living to help you understand how best to look after your liver.

Chronic liver disease can often take around 20 years or more to develop, changes to your everyday life can play an important role in slowing down progression or even reversing some existing damage. Lifestyle moderation advice is likely to be around the following:

• reducing or abstaining from alcohol
• following a healthy diet and reducing your weight if you are overweight
• better management of other chronic diseases (such as diabetes) that may be contributing to liver damage
• screening for hepatitis B and hepatitis C if you have risk factors for either.

Clear, accessible information

So that you feel confident you know as much as you can about your liver condition, and can make informed decisions about how to manage and treat it. For instance, you should receive:

• a description of the type of liver disease you have
• advice on treatment options (based on best practice)
• advice on any side effects of the treatment and how to manage them
• diet and nutrition advice
• a contact for a specialist nurse for further advice and support
• information on any relevant research or clinical trials
• advice on how you can help improve and manage your liver health
• advice on how you can access additional support (including relevant liver charities or websites).

Access to the best standard of medical care

Regardless of where you live, lifestyle, and type of liver disease you have.

Copies of any correspondence

Including the results of tests, sent by your GP or hospital team relating to your care.

Find out more: Liver conditions

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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.

If you wish, your family can be given information and be involved in discussions about your treatment and care. It is up to you to decide how much you wish your family to know about your health. If you need it, you should have additional support such as access to a social worker, counselling or information about benefits and financial support if you need it.

Find out more: information for family, friends, and carers

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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.

You should also have:

• six-monthly ultrasound surveillance and tumour marker blood tests if you have cirrhosis (sometimes cirrhosis can lead to liver cancer and it’s important that you are monitored for this)
• regular appointments with your liver team. Your consultant will advise on this, but they are typically every six to 12 months depending on your situation
• a named point of contact at the liver service (including out of hours), and be given guidance on what to do in emergencies.

Find out more: cirrhosis

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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). Your consultant should explain:

• what the complications are and what triggers them
• what may have caused this change (such as a return to drinking after abstinence, an infection or dehydration)
• what it means for you and what treatment options are available
• the side effects, advantages or disadvantages of any treatment options including liver transplant if appropriate

Before you make any decisions on your treatment, you should have an opportunity to ask any questions or discuss any concerns you may have with your consultant. The consultant should also talk to you about your prognosis (the probable or most likely outcome of your condition) and longer term care. You may be considered for referral for assessment for a liver transplant and/or other treatments not available at your hospital.

Find out more: cirrhosis treatments and complications

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6 You should have access to specific information on diet and nutrition

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.

If needed, your consultant should refer you to a hospital registered dietitian for a specific diet plan.

Find out more: Diet information for people with a liver condition.

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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. So that your wishes are known and acted upon, it should include sensitive discussions and planning ahead about:

• pain relief
• where and how you wish to be cared for should your condition deteriorate
• how to ensure the support you have meets your needs
• who you would like contacted and who you would like to make decisions on your behalf if this becomes needed

Find out more: Thinking ahead

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