Support Information

We have information to help you and your family through your liver journey. Sometimes, the journey that parents experience is different from their child and for this reason we have developed information leaflets with hints, tips and advice for two stages of your child’s journey.

Support through your child’s liver journey

This is an introductory leaflet when your child has received a diagnosis. It covers areas such as:

  • Medical care and teams – what to expect
  • Looking after yourself
  • Information sources
  • Managing procedural distress
  • Going on holiday and school trips
  • Education and financial support
  • Support services you can access
  • Helpful tips from other parents.

This leaflet is designed so that you are able to be refer back to this information at a time that is suitable for you and your family.

Download Support Through Your Child’s Liver Journey PDF here

Supporting young people

This leaflet provides an overview of the key areas parents need to think about as their child is growing up. Key topics include:

  • Medication responsibilities
  • University/careers
  • Finances
  • Prescription charges
  • Transition to adult services
  • Support available for young people
  • Hints, tips and quotes from both parents and young people affected by a childhood liver condition.

Download Supporting Young People

Living without a diagnosis

All childhood liver diseases are rare but living without a diagnosis can be particularly difficult. We have updated our leaflet which contains advice and information for young people and families who are in this situation. Key topics include:

  • Why some liver conditions are difficult to diagnose
  • Tips and advice on coping and living without a diagnosis
  • Sources of support when living without a diagnosis

Download Living without a diagnosis

Joe's Liver Transplant Story


CLDF has produced Joe’s Liver Transplant Story to help children to understand what a liver transplant is and to learn about the processes involved.

The book is targeted at 4-8 year olds, but can also be used with younger and/or older children as a starting point for discussion. The story is designed to be used by play specialists, psychologists and parents and tells Joe’s story from liver transplant assessment right through to recovery after the transplant.

The book is suitable for: –

– Children who are going through a transplant assessment or who are on the waiting list.
– Children who have undergone a liver transplant in the past to help them understand what happened to them.
– Siblings and friends of children who have had or need a liver transplant to give them more of an insight into what will happen or what has happened.
– Other children who would like to know more about liver transplantation.

The book is available to be ordered by:-

– Parents
– Friends and families of children requiring liver transplantation.
– Healthcare professionals (including play specialists, psychologists, transplant coordinators and specialist nurses)
– Teachers
– Libraries

*If you meet one of the above categories and did not receive a book during transplant assessment, feel free to contact us for a copy for your young children.

You can order your book through the families order form, by emailing or calling 0121 212 6028.

Additional sources of help

We’re here for every UK family who is affected by liver disease in their child. Sometimes, however, you may need particular help with a specific issue or may wish to speak to someone urgently. On this page, we’ve listed some of the organisations who may be able to provide additional support.

Mental/emotional health

Papyrus is a UK charity dedicated to the prevention of suicide in young people Papyrus UK Suicide Prevention | Prevention of Young Suicide (
Samaritans provide a 24 hour 365 day a year service for anyone who is struggling to cope and needs someone to listen Samaritans | Every life lost to suicide is a tragedy | Here to listen
The Campaign Against Living Miserably is a suicide prevention charity with a particular focus on the fact that 75% of UK suicides are male Homepage | Campaign Against Living Miserably (CALM) (
Mind is a charity providing information and support to anyone experiencing mental health problems including support for young people Home – Mind
Young Minds
Young Minds is a UK charity specifically focussed on providing young people with information and advice to help support their mental health YoungMinds | Mental Health Charity For Children And Young People | YoungMinds

Financial support

Citizens Advice
Citizens Advice offers free, confidential and impartial advice on a range of topics over the phone and in person Citizens Advice
Turn2Us is a national UK charity providing practical help to people who are struggling financially Tackling Financial Insecurity Together | Turn2us.


NHS Blood and Transplant helps people to donate blood, organs, tissues or stem cells to help someone else in need Home – NHS Blood and Transplant (
British Liver Trust
The British Liver Trust is the UK’s largest liver charity for adults. The charity provides information and support to patients and raises awareness of the risk factors of liver disease amongst the general public British Liver Trust – Pioneering Liver Health
PFIC Network
The PFIC network is an international organisation to improve the lives of patients and families worldwide who are affected by Progressive Familial Intrahepatic Cholestasis Progressive Familial Intrahepatic Cholestasis – PFIC Network
PSC Support
PSC Support is a UK organisation dedicated to improving the lives of people affected by primary sclerosing cholangitis (PSC) PSC Support

Young people’s services

Childline is a free confidential service for anyone under the age of 19 to talk about anything at any time About Childline | Childline

Nightlines is a unique listening service, providing emotional support and information to students across the country Nightline Association – We’ll Listen, Not Lecture


Cruse is a national bereavement support charity with the aim of helping anyone, no matter how long they have been grieving Get support – Cruse Bereavement Support
Compassionate Friends
The Compassionate Friends is dedicated to supporting bereaved parents, siblings and grandparents who have suffered the death of a child from a month old from any cause The Compassionate Friends (
Winston’s Wish
Winston’s Wish provides bereavement support to children, teenagers and young adults (up to age 25) Winston’s Wish – giving hope to grieving children (

Support for specific areas

Community Advice and Listening Line
Community Advice and Listening Line offers emotional support on mental health matters to the people of Wales C.A.L.L. Mental Health Helpline – Community Advice and Listening Line (

Breathing Space
Breathing Space is a confidential phoneline for anyone in Scotland age 16 years or over, feeling low, anxious or depressed Breathing Space is a free confidential service for people in Scotland. Open up when you’re feeling down – phone 0800 83 85 87

Lifeline is Northern Ireland’s crisis response helpline for anyone experiencing distress or despair Lifeline | Lifeline Helpline

    Help us improve our patient information 

    Fill in our surveys to let us know what we’re doing well and how we can improve to better meet your needs 

    Members of the public – patient information survey           Healthcare professionals – patient information survey 

    If you have any questions about these resources, please email: