Support through your child’s liver journey

Medical care

There are three specialist liver centres for children in the UK. These are:

• Birmingham Children’s Hospital
• King’s College Hospital, London
• Leeds General Infirmary

Most children who have a liver condition will be referred to one of these centres and will be seen by a consultant hepatologist (a specialist liver doctor).

Your child may also be seen at one of the “shared care” clinics across the UK. This is when appointments are shared between specialist liver centres and hospitals closer to where you live. Medical professionals at each hospital will work closely together to ensure your child receives the best care. This also ensures that your local hospital becomes familiar with your child in case
of admissions.

There are many sources of help and support on offer within your child’s hospital team. The people available will vary in each hospital but possible team members you can speak to are:

• clinical nurse specialist/liaison nurses
• transplant co-ordinators
• play specialists
• psychologists
• consultant paediatric hepatologists
• specialist social workers
• family support workers

It can be useful to be aware of your local community facilities such as GPs, health visitors, community nurses, school nurses and teachers.

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Looking after yourself

The most important thing to know is that you need to look after yourself in order to be there for your child. This means remembering to eat, exercise, sleep and give yourself time to relax. This will help you to be refreshed and more able to cope.

It may help to talk to people in similar situations. If you’d like to do this, speak to Liver UK’s Families Team who can help to arrange contact.

Make sure you accept help when it’s offered. You may want to deal with everything on your own but family and friends often want to help however they can.

Useful tips:

• Do something just for you such as a long soak in the bath, time out with friends, going for a walk or reading a book.
• Try relaxation techniques such as listening to podcasts and music.
• Eat well but also treat yourself when you need it.
• Get some sleep. If your child is in hospital, sitting by the side of the bed for 24 hours with no break will only make you tired, hungry and weak, meaning you are less able to support them.
• Speak to other family members or friends and see if you can help each other.
• Try not to feel guilty about having time for you, laughing, forgetting for a minute or giving in to your emotions.
• Remember you are not just a parent or carer – your individual well-being matters too.
• Speak to family, friends or someone you trust about how you are feeling.

Be kind to yourself and make sure you take at least 20 minutes off ward each day to breathe some fresh air or to have a quiet coffee.

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Information

You may want to know as much as you possibly can about your child’s condition when you first receive a diagnosis. You should be given information about your child’s condition from the healthcare professionals looking after your child. This information may be produced by the hospital or it may be from Liver UK.

It is tempting to search online for more information. However, there is a lot of inaccurate information online so it is hard to know what to trust.

Find out more about finding information online

Liver UK information has been produced with medical professionals to ensure it is accurate, up-to-date and easy to understand. Only use information from trusted sources such as Liver UK or your child’s specialist centre. Remember information you find online may not be accurate so if you read something which raises questions, write these down and take them to your child’s next
hospital appointment, call your child’s clinical nurse specialist or get in touch with Liver UK. Also, information can quickly become outdated so make sure you check when it was last updated.

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Advice after diagnosis

We asked parents/guardians of children with a liver condition what advice they would give to others. Here are their top pieces of advice for those with children newly diagnosed with a liver
condition.

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Blood tests and procedural distress

Procedural distress is a combination of fear, anxiety and pain. Medical procedures can be unpleasant for children and sometimes it can be very distressing for them, their parents/carers and even the staff looking after them.

There can be many triggers for a child to become distressed e.g. needles for blood tests. A qualified play therapist within the hospital team may support your child through procedural distress. They will also work with the medical team to see if an element of choice can be brought into the procedure, e.g. asking your child which arm they would prefer to have blood taken from or which sticker/plaster they would like. This allows your child some control over the situation, which may help them to overcome the pain, discomfort and fear they experience.

As a parent/carer you can play an important part in supporting your child:

• Honesty is the best policy. Don’t try and surprise your child with a procedure. It may be best to make sure they are aware of it and understand why it is being done before they get to the hospital or GP surgery.
• Don’t tell them that it won’t hurt if it will.
• By making sure the healthcare team know about your child’s fears they may provide options such as offering local anaesthesia or a play specialist to support your child.
• There may also be opportunities to distract your child with play or with a tool such as an electronic game or photo album. Be aware that some children may find attempts to distract them distressing. Therefore, consider what would work best for your child.

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Financial support

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Education support

Nurseries, schools, colleges and universities should put measures in place to ensure your child is safe and is supported to achieve their best potential. An individual healthcare plan is a document that sets out your child’s medical needs and how they should be handled, e.g. medicines they can administer and what to do in a medical emergency. This can help to make it easier for everyone involved in your child’s care and education.

Individual healthcare plans are not the same as education, health and care (EHC) plans. EHC plans outline the support needed by children with special educational needs. Some children may have both types of plan if their needs are significant. Liver UK has an Education Pack available with information about the needs of children and young people with a liver condition and includes useful templates. You can give this to your child’s educational establishment.

Find out more about education

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Siblings

When your child is ill, it can be difficult for their brothers and sisters to understand what is happening and you may worry about how they will cope. There are lots of things you can do to help your other children to understand and adjust, such as:

• Make sure that siblings have an age-appropriate understanding of the illness and why their brother or sister is in hospital. You can try to protect the well sibling but this may lead to them developing their own (often incorrect) interpretations of the situation.
• Ensure there are times for siblings to ask questions and talk about their worries or fears.
• If appropriate, offer an opportunity for siblings to come to appointments before an admission to hospital (e.g. at pre-transplant assessment) so they can see the hospital, understand where their sibling will be, and meet some of the team who will be looking after their brother or sister while they are in hospital.
• Provide siblings with a helping role. Make them feel involved and part of the team working to make their brother or sister better. Possible roles might be helping to pack a bag for hospital, collecting ‘get well soon’ messages from school, or organising decorations for the hospital room.
• Ensure siblings can communicate regularly such as through Skype, social media, video calling or a diary.
• Consider agreeing a plan for emergency hospital admissions, e.g. they can call first thing each morning, they will be allowed to visit if the admission lasts longer than 24 hours. This may help them to feel more in control.
• If the child who has a liver condition is being encouraged to make a memory box or scrapbook about their illness journey, encourage their siblings to contribute to this, or even make their own.
• Where possible, support the siblings to have time together, whether that’s cuddle time, talking time or simply time to have fun.
• Make sure you find space to have time with siblings not in hospital.
• If appropriate, inform siblings of Young Carers support: www.childrenssociety.org.uk/youngcarer/help-for-young-people

Liver UK has a Siblings Pack to help start conversations about their feelings and to provide helpful tips. You can contact the Liver UK Families Team to order a copy.

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Family and friends

Friends and family can often feel powerless when a child is ill. It can be doubly hard for grandparents who see the effects on both their child and grandchild. It can be helpful to keep them updated about your child’s care and make them feel included.

Friends and family can also provide invaluable help and support so don’t be afraid to ask. As well as providing emotional support they are often keen to offer practical support, such as looking after pets if you are in hospital with your child, sitting with your child in hospital to give you a break or picking your other children up from school.

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Going on holiday

Holidays are important. They are a chance to get away, relax and spend some time with family and/or friends. Further along your family’s journey, having a liver condition or transplant and going on holiday should be part of normal family life.

Before you book anything, talk to your nurse, specialist, consultant and/or GP and ask whether it is advisable for your child to go on holiday. It is important for them to know the details of where you are planning to travel and activities. It may be that flying or travelling abroad may not be advised but a break within the UK would be OK.

Once you have had the all-clear, you can begin to plan your holiday. Wherever you are going, there are a number of things you can do to ensure a stress-free time:

• Carry an up-to-date letter from your consultant or GP for insurance and security purposes, including details of your child’s medical conditions/transplant, medicines and dosage.
• Allow plenty of time for medicines to be ordered and collected before you travel and make sure that you have enough to cover your trip.
• Some medicines to treat liver conditions or transplants can cause increased sun sensitivity. Buy sun lotion with a protection factor of at least 25+ and follow the directions
  for application. It is strongly advised that all transplant patients wear hats and cover up as much as possible with cool clothing.
• Check whether immunisations are required and the type needed. Find out more from the NHS website: www.nhs.uk/vaccinations/. Check with your local hospital whether the type of vaccine required is suitable for your child. Live vaccines should not be given to people who have had a transplant. Your clinical nurse, specialist or consultant will be able to advise you. 
• If you are unsure about the healthcare available in the country you are visiting, contact the Embassy or High Commission of that country and ask for the relevant information.
• All prescription medicines should be carried with you. Check the current rules for carrying
  medicines in your hand luggage before you fly.

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