This is an introductory leaflet when your child has received a diagnosis. It covers areas such as:
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.
This leaflet provides an overview of the key areas parents need to think about as their child is growing up. Key topics include:
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:
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 families@childliverdisease.org or calling 0121 212 6028.
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.
Samaritans
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
Shout
24/7 text support for anyone in the UK who needs support. Text ‘shout’ to 85258 Shout: The UK’s free, confidential, 24/7 mental health text service | Shout 85258
CALM
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) (thecalmzone.net)
Mind
Mind is a charity providing information and support to anyone experiencing mental health problems including support for young people Home – Mind
Papyrus
Papyrus is a UK charity dedicated to the prevention of suicide in young people Papyrus UK Suicide Prevention | Prevention of Young Suicide (papyrus-uk.org).
Qwell
Qwell is a free, anonymous online mental health and wellbeing service tailored to adults. Live text chat 24/7, 365 days a year Home – Qwell.
Hub of Hope
Hub of Hope is the UK’s largest mental health support directory and includes support for adults, young people and urgent help Mental Health Support Network provided by Chasing the Stigma | Hub of hope.
Citizens Advice
Citizens Advice offers free, confidential and impartial advice on a range of topics over the phone and in person Citizens Advice
Turn2Us
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 (nhsbt.nhs.uk)
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
Childline
Childline is a free confidential service for anyone under the age of 19 to talk about anything at any time About Childline | Childline.
Nightlines
Nightlines is a unique listening service, providing emotional support and information to students across the country Nightline Association – We’ll Listen, Not Lecture.
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
Kooth
Kooth offers free, safe and anonymous 1:1 support for young people Find out more about 1:1 support – Kooth.
Cruse
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 (tcf.org.uk)
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 (winstonswish.org)
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 (callhelpline.org.uk)
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
Lifeline is Northern Ireland’s crisis response helpline for anyone experiencing distress or despair Lifeline | Lifeline Helpline
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