Information for families and carers

Support from your transplant team

The transplant team will make sure that you get the right information about liver transplants. And they’ll give you access to a range of support, including services that offer psychological, social and spiritual/cultural support.

There’s usually a dedicated transplant healthcare professional who’s on the end of a phone 24/7 for patients and carers. And there’s ongoing contact with the transplant centre, specialist nurses, and a social worker. You won’t be alone getting your family member through this.

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How you can help – liver transplant assessment

Liver transplant assessment is a process to see if a liver transplant operation is possible for a person, and the best treatment option for them. They’ll need to have this assessment before they can go on a waiting list for a liver.

The process can vary between liver transplant centres but it will involve having a number of tests over about 2 days. The person may be admitted to hospital to have the tests or they may be able to stay at home but go to hospital for each test. Talk to your transplant centre about which option will work best as you may need to drive them to the hospital or go along for the tests (depending on current infection control measures in place) so it will depend on your availability too.

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Getting the call

Once a matching liver donor is found, your transplant team will contact you. This can be at any time, day or night. Your family member will need to go to the transplant centre straightaway. It’s probably best that you drive if possible as they may feel anxious about what lies ahead.

It’s a good idea to plan for the call in advance. Make sure you have arrangements in place so you can drop everything and go. Here are some ideas of how to prepare.

• Stay close to home so you can get to hospital quickly when the call comes. Your family can temporarily take themself off the liver transplant waiting list if you have a family function, such as a wedding, to attend, or want to go on holiday. But it’s important they let your transplant coordinator know how long this will be for.
• Have a pet sitter on standby and make arrangements for childcare or other responsibilities.
• Pack a bag for your family member and you. Remember your phone charger (ideally one with a long lead).
• Stock up. Fill your freezer so you have meals ready.
• Keep your petrol tank topped up. Avoid any unnecessary stress and stops on the way to the hospital.
• If you work, let your employer know about your situation and that you may need to take leave at short notice.

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False calls

Your family member will have some tests before the operation. The operation can only go ahead once the surgeon and anaesthetist are satisfied that they’re well enough to have the operation, and that the donor liver is right for them.

Sometimes, the operation may not be able to go ahead. In fact, its normal to experience one or more false calls before you have a liver transplant. This can be such a difficult time for you all and there are support services that can help you. We have a helpline and online community where you can connect with people who may have been through a similar experience.

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The operation

If the operation does go ahead, it will usually take about 5 to 8 hours, but it can be longer. Your transplant coordinator will keep in touch with you throughout the operation.

Your family member will recover in the intensive care unit, usually for a few days, until they’re well enough to go to a hospital ward. Once on the ward, they will be supported by a range of health professionals to help them recover and prepare to go home. This is usually after a week or two but it will depend on how well they recover.

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How you can help – after the liver transplant

A liver transplant is a major operation and the recovery process can be long (up to a year). Your family member will need to commit to their own health after the operation. This will of course impact you too.

For example, they might need help with the following.

• To take medicines (they’ll take these for the rest of their life).
• Going to appointments with the transplant team at the hospital – these will probably be once a week for the first 2 or 3 months and get less often as they recover – every few months to once a year. They won’t be able to drive for a few months so you may need to take them. If you don’t drive, see if there are some public transport options, or book a taxi.
• Going to other appointments. Since they can’t drive, your family member may need you to drive them to other appointments aside from those at hospital, such as to see friends and family, or attend support groups.

You’ll be supported by a range of specialist health professionals during their recovery, and going forward. Most people are eventually able to return to most of their normal activities after a liver transplant, and have a good quality of life. Remember that this support extends to you too.

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Mental health support

Caring for someone can take its toll. You and your family member can get support with your mental health. Speak to your GP, who can refer you. In England and Wales you can also refer yourself into a service.

• England Improving Access to Psychological Therapies (IAPT) programme. This provides free access to psychological support for both you and your family member. You can access this through your GP, or can refer yourself online.
• Wales (SilverCloud). This has a suite of programmes designed to help you think and feel better.

Other parts of the UK have different services – ask your GP what’s available in your area.

We have more information and support of our looking after your mental health page.

Useful websites

Carers UK

Practical and emotional support.

Carers Trust

Support, services and recognition for anyone living with the challenges of caring.

Samaritans

Samaritans are there to listen to whatever is troubling you, no matter how big or small. You can call for free (116 123), text or email them 24 hours a day, every day.

Mind

Information, advice and support for anyone who is having a problem with their mental health.

Carer’s Allowance

If you care for someone at least 35 hours a week, you may be eligible for carer’s allowance.

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Benefits

There are a range of benefits that may help you and the person you care for. These include:

• Universal Credit
• Personal Independence Payment (PIP)
• Carer’s Allowance

Find out more on our benefits page.

You may also be able to get help with the cost of prescriptions. Find out more here.

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