Living with a liver condition

Education

Nursery, school, college and university are an important part of a child or young person’s life. This page provides information on education and supporting children with a liver condition.

The information on this page is for:

Parents of children with a liver condition.
Young people with a liver condition.
Family, friends, carers, and teachers.

On this page:

Education and liver disease

A child or young person with a liver disease may appear fine but they may have a range of physical limitations and mental health issues from the impact of living with a chronic health condition.

Nurseries, schools, colleges and universities should put measures in place to ensure your child is safe and is supported to achieve their best potential.

Liver UK has an Education Pack available with information on the needs of children and young people with a liver condition. You can give this to your child’s educational establishment.

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My mum had already been asked by the school nurse to discuss my medical needs, so when I started school all my tutors were fully aware of my condition. They had even made some laminated cards for me to carry around with me which had emergency contact numbers and details of what I can or can’t take. It really made me feel at ease.

- Charlotte

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Education Pack

Our Education Pack has been developed to be given to your child’s nursery, school or college. It provides general information about liver disease and the problems which can arise.

The pack tells schools, nurseries and colleges what they need to know about having a pupil who has a liver disease. We have different education packs for the 4 devolved nations (England, Scotland, Wales and NI) – this helps cover the different educational systems.

Our Education Pack covers the following areas:

Liaising with nursery, school and college
Meeting indivdual educational needs
Education whilst in hospital or at home
Attending hospital appointments
School policies and practice
Emotional support

Contact the Liver UK Children and Families Team to order a copy of our education pack

Thank you for providing helpful, clear guidance to allow us to support one of our pupils with a rare liver disease. It was very useful to speak to an expert to raise our awareness of what signs we should look out for and how we could support him to attend as much as possible.

- School Pastoral Lead

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College and university

When your child has needed more support than most and has faced many challenges, the task of letting them go is often much harder. It is normal to feel concern, anxiety and even a sense of loss when your child starts to become more independent.

Remember that independence is vital for a child to develop. It may help to encourage young people to discuss their wishes and plans for the future. Help them to be realistic without damaging their aspirations and dreams. There is a lot of help out there to prepare young people for these decisions.

Planning

Always research the UCAS information available from schools and colleges. Consider what provision is best for your child, e.g. campus universities that provide accommodation close to lecture venues may work better for young people who experience fatigue/tiredness. They are also more likely to have a medical centre nearby.

Funding

There may be grants and local authority funding available for non-advanced college courses, especially for families with a low income. Grants for disabled students may also be available to help support students with special needs. These grants cover personal support needs or provide equipment such as computers.

Advice on Disabled Students’ Allowance and associated support can be accessed at https://www.gov.uk/disabled-students-allowance-dsa

Medical care

It is important that your child registers with a new GP as soon as possible and that the practice is updated with their health needs.

At this stage young people should be well versed in managing their medication and will need to ensure they are able to access a supply of medication while at university.

Life at university

Young people with a liver condition may be able to access extra help in examinations, such as rest periods and/or extra time, if their tutor thinks that this is appropriate.

Socialisation is also a very important part of university and college life. Make sure your child has had the opportunity to discuss safe sex, contraception and safe limits for alcohol use.

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Useful links
Living with a liver condition
How we can help

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