Talk to someone
We know that it can be easier to talk to someone outside your family and close friends. Our children and families team have a wealth of experience in talking to parents, children and young people who are affected by childhood liver disease.
What we can offer:
- Practical advice on everything from how to access financial support, making the most of medical appointments, to what the school need to know or things to consider when going on holiday.
- Emotional support including confidential one to one calls, wellbeing webinars and benefitting from the experience of other families who know just what you’re going through.
Please note: our children and families team are not medically trained and therefore cannot provide medical advice; however we can always signpost you to clinical teams and we can advocate for you if needed.
Whether you have a specific query relating to your child’s liver condition, or you’re simply feeling very alone and need to talk to someone, we are here for you. Sign up to our support service using the form below and one of our team will get in touch.
If you would like to speak to a member of the team before registering, you can contact us on 0800 652 7330 from 10am to 4pm, Monday to Friday, or email [email protected].
Useful information
Having a reliable source of information is really important if your family are dealing with a medical condition. All of our information is reviewed by expert professionals and patients with lived experience, so that you can get information that you can trust.
Find out more about how we make our information.
Resources
Download our information leaflets for hints, tips and advice. Click on the title to find out more and download the leaflet. You can also order a physical copy of any of our resources, including information on specific conditions free of charge.
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.
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.
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
Get support
This form is for parents and guardians of children or young people with a liver disease. Once you have filled in the form, one of our team will be in touch as soon as possible to further discuss how we can best support you and your family. Young people over the age of 16 can also sign up for direct support from us here.
Your stories
More support
Support for young people
We can also support your child directly if they are between the ages of 11 and 24. Our support includes advice, monthly online hangouts with other young people with liver disease and one to one chats with our Young People’s Officer.
