Supporting young people

Support your child to understand their condition, including the implications for their future, to the best of their ability.

Encourage them to be responsible for their medicines. You may need to supervise at first but also learn to trust them once they feel confident in managing their medication. Be aware that problems taking medicines (non-compliance) can happen at any time and therefore it may be helpful to talk through the implications of not taking medicines.

Find out more about managing medicines

Although it is scary allowing your child to organise themselves, it is really important to start this at an early stage so you can tackle a little at a time.

Allow your child to stay over with friends because this will encourage them to organise their own medicines as well as mix with their peers.

Allow them to speak for themselves at consultations and/or encourage them to have discussions with the doctor without you present. You may want to suggest writing down questions before their appointment.

If you find that healthcare professionals address you first, direct them to your child so that they are included in the discussions. Be aware that your child may want some privacy, e.g. if they are having a physical examination.

Encourage them to take the lead at their hospital appointments. It might help to talk to them in advance about how they have been health wise to give them time to prepare for the discussion with their medical team. Ask them to write down notes if it helps them to remember everything or get over any initial nerves they might have.

If your child is well, allow them to take on other responsibilities such as a part-time or holiday job. Check with your hospital team that the work they want to do is suitable for them given their specific liver condition.

As long as your child is well, the hospital are aware and with good communication with the school, there is no reason why your child should not take part in school trips (both in this country and abroad). However, it is always best to confirm this with their medical team. Liver UK has useful information online about going on holiday.

Register your child with MedicAlert or a similar scheme. This allows your child to wear an identifying piece of jewellery with emergency contact details and important information about their condition and medication.

If your child has a mobile phone you may be able to input medical information in the medical ID section of the phone. This can be accessed without passwords in an emergency situation.

There are number of support and guidance services available to help young people with careers advice such as:

• Schools career service
• National Careers Service
• Job Centre Plus
• Work experience
• Voluntary work

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.

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.

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.

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 via https://www.gov.uk/disabled-students-allowance-dsa

Once a child turns 16, the Department of Work and Pensions will pay any benefits they are entitled to directly to them. There may also be a change to the benefits they receive. For example, if they receive Disability Living Allowance (DLA) they will continue to receive this until they are invited to apply for Personal Independence Payment (PIP) after the age of 16.

It is important to ensure your child has a suitable bank account and understands how to manage their money. Ensure they check with Job Centre Plus to make sure they are receiving everything they are entitled to.

In England, young people over the age of 18, or over 16 and out of full-time education, have to pay for their prescriptions. A prescription prepayment certificate (PPC) can reduce the cost of prescription charges if you need multiple medications.

There may be help with prescription charges if a young person receives benefits. For example, they may be able to apply for an exemption certificate if they are on a low income. Parental income is not included in the assessment.

Prescription charges were abolished in Wales in 2007, Northern Ireland in 2010 and Scotland in 2011.

You can find further information online at www.nhsbsa.nhs.uk/check-if-youre-eligible-help

• Family consultations
• A team of different professionals and types of support available such as family support worker, play worker, psychologist, dietitian and a specialist nurse
• Fewer patients
• Treatment by a medical team with specialist knowledge of childhood liver conditions
• Medication is usually free

• Individual consultations
• Limited team support
• Large patient numbers
• Staff may have less experience of rare childhood liver conditions
• Prescription charges apply
• Procedures may be done differently in an adult unit

The experiences and feelings about transition to adult services will be different for everyone. Transition can often be talked about in a negative way due to the change and anxieties that it often presents. However, for many young people and families, transition has been a positive experience of development and independence.

As a parent/guardian you may find it difficult to cope with your reduced role in the medical care of your child. Remember you should still be actively included where and when appropriate.

The medical team may feel your child is ready to be seen independently at an earlier age than you feel is appropriate. The most suitable age for transition to adult services is different for each child and it is important that both medical professionals and parents/guardians appreciate this. Don’t be afraid to question doctors and ask for further clarification or support during these discussions. You should feel you are able to advocate for your child if they want somebody to accompany or support them during an appointment. Your medical team will want to make the change as easy as possible for you and your child to ensure that it is a positive process.

Young people, aged 11–24, can contact Liver UK’s Young People’s team, if they want to talk about issues affecting them, meet and share with others or belong to a group who care and understand what it is like to live with a liver condition. They can also join a dedicated group called HIVE/HIVE+ for 13–24 year olds to connect and share stories.

If you are concerned about a young person, you can also contact CLDF’s Young People’s Digital and Engagement Officer.

If you are a relative of a young person with a liver condition who would like direct support for yourself, you can contact Liver UK’s Families Officer.

Find out how we can help

Young people can ask their medical or transition team for support through the process of moving to adult services. If they are based at a regional centre, they may be able to access youth work services.

There may also be peer support available for young people at their hospital if they are attending transition clinics. Please contact your child’s medical/transition team to discuss this.

Contact with another family can be of great help and an exchange of shared experiences lessens isolation and anxiety. Liver UK may be able to help put you in contact with other families who are best suited to your needs through introductions at events, or where appropriate, through telephone/email contact.

Find out how we can help