It is normal to have confused or mixed feelings when you are told that your loved one has a liver condition. A proper diagnosis may be a relief if you have been living with uncertainty. Or it could be sudden and unexpected.
Liver conditions can be very unpredictable. Your loved one’s experience could be quite different to someone else with the same condition. This means it can be hard for doctors to tell you exactly what to expect.
There will probably be good days and bad days. But whatever you are feeling and going through, you are not alone and there is information and support available for you.
The information on this page is for:
- Family, friends, and carers of an adult with liver disease
You can find information about caring for a child with liver disease here.
On this page:
Understanding their condition
Liver disease is very common. But it is not often talked about. Most people know very little about it when they or their loved one are diagnosed.
It is natural to have lots of questions but getting time with a doctor to ask them can be very hard.
Liver UK has information about most types of liver disease. All our information is made alongside patients and senior specialist doctors and nurses.
You can find our information about liver conditions here
If you are having to tell lots of other people about your loved one’s condition, then it can help to share this information.
Health care professionals can sometimes use a lot of complicated words. You can look these up in our
Health care professionals sometimes use a lot of complicated words. You can look these up in our useful words glossary here.
Thinking about where to get treatment.
If your loved one is being treated by a hospital consultant, you might want to look into different options for where they are treated.
This could be to make it easier to get to the hospital or to make sure that you see someone who is a specialist in your loved one’s condition. Lots of hospitals will have a gastroenterology department that can treat some types of liver disease. But for more specialist care you might want to ask to be referred to a consultant hepatologist at a liver unit.
Find out more:
Understanding your loved one’s medicines
Some types of liver disease can be managed with medicines. But for most conditions, medicines will be used to help cope with symptoms.
This can mean that your loved one ends up with lots of different medicines and you may need to help them organise and take them.
It can help to understand a little bit about the different medicines and what they are all used for.
You can find some information about medicines on the condition pages.
It’s a good idea to keep a copy of the information leaflet that comes with each medicine. This should include advice on how to take it and what to do if your loved one misses a dose. You could snap a picture with your phone, so you can check things when you’re away from home.
You can also ask a pharmacist to explain what each medicine is and what it is used for. If you are not able to speak to a pharmacist when you get the medicines, then try taking them to your local pharmacy. Most pharmacists will be happy to explain what the medicines are and what they are usually used for.
Using the BNF
Another option is the BNF. BNF stands for British National Formulary. It has detailed information about medicines that are licensed for use in the UK. It is designed for health care professionals and pharmacists. So it gives a lot of complicated information. But you can still use it to find out the key facts about a medicine. Here is how to do it.
- Open the BNF website
- Use the Browse drugs by A to Z section to find the medicine and click on it
- Click on the “indications and dose” section to see what the medicine is used for and what the normal dose is
- There is also a section on side effects
For example, if you have been given lactulose, select L and then Lactulose. If you scroll down to the indications and dose section, you will see that lactulose is used to treat hepatic encephalopathy. This is a serious complication of liver disease.
The same medicine might be used in different ways for different conditions. The BNF covers all medical conditions so not all the information in it will be right for your loved one. Never stop a medicine or change the amount without getting personal advice from your loved one’s doctor.
Mental health support
If your loved one is living with a serious liver condition, it can have a big impact on mental health for both of you. Unfortunately carers have told us that they are rarely offered any help to cope with this and accessing services yourself can be difficult.
Our looking after your mental health page has some simple advice that you could both try. There are also links to other organisations that can offer help.
Many people find it helps to talk to others in a similar situation to them. We run a number of online support groups for people living with a liver condition and for carers. We also have a friendly online forum for people with a liver condition and their families and friends.
Telling other people
Close friends, family or carers are often the ones who have to tell others about their loved one’s condition. Deciding who to tell and how much to tell them can be difficult. But having someone else to talk to can be helpful for both you and the person you are caring for.
You can find out more about this on these pages:
Telling people about your liver condition
Includes help with talking to friends and family and information about when you might need to tell healthcare professionals, employers or insurers.
Talking to children about what is happening
Advice on how and when to talk to children about a loved one’s condition and where you are find support.
Support
How Liver UK can help
A diagnosis of liver disease can be worrying, and you may have a lot of questions.
We're here for you and for your family and friends. Whether you have questions or just need someone to listen, we can help.
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This content was last reviewed: January 2024
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We would like to thank all the families, friends and carers who helped with creating and reviewing this page.
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