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Transitioning to adult services with a liver condition

Our approach

Sheffield Children’s NHS Foundation Trust seek to provide information and support to help young people during their progression towards adult services to avoid any unnecessary stress for young people and their families. Each young person will be listened to and their feelings acknowledged. Their right to confidentiality, privacy and dignity will be respected. Individual care will be negotiated with the young person and their family. They will be encouraged to participate in all aspects of care, as they feel able. We shall embrace cultural, spiritual and religious needs.

Teenagers go through many changes which are biological, psychological, intellectual and emotional. It is a transition from dependence to independence. Young people mature at differing rates and therefore it is required that the caring adult be as sensitive and flexible to maturation as possible.

Preparation for transfer

This may be an anxious time for both you and your family but we are here to support you through the process and there is a section at the end of this resource to help.

Remember, parents or carers have to learn to ‘let go’ and give you space to become more independent. That is no easy task when they have nurtured and cared for you and made decisions for you when you were a child and while you were growing up. It is important therefore to respect each other’s emotions.

Children’s Liver Disease Foundation have made some suggestions which you many find helpful

  • Attend transition appointments with parents or carers, but take the lead in discussion and asking questions (writing these questions before coming may be useful).
  • Discuss and negotiate with your parents or carers if you would like to spend some time with the doctor on your own. This can be done before you come to clinic so you have a plan for your visit.
  • Start to take responsibility for taking, ordering and collecting your own medicine from the hospital or GP or local pharmacy.
  • Remember, becoming responsible takes time. You will always have a parent or carer to support you, so don’t panic.

What difference can I expect?

The main difference is that you, rather than your parents or carer are in charge of your health. You will be encouraged to see the doctor on your own, without your parents or carer for all or at least part of the visit.

The way that certain tests and investigations are carried out in the adult hospital may be different from at Sheffield Children’s but we will discuss this with you in clinic.

Taking care of yourself 

Get to know your liver

It is useful to have some understanding of how your liver works, what your liver condition is and how to recognise the signs and symptoms of liver disease.

If you notice any of the following symptoms you should seek medical advice:
  • abdominal pain
  • change of sleep patterns
  • grey or pale coloured poo
  • jaundice (yellowing of the skin and the whites of the eyes)
  • loss of appetite
  • nausea
  • passing of blood in your poo and wee
  • unintentional weight loss
  • pruritus (itching)
  • tiredness or loss of stamina
  • vomiting (being sick)
  • vomiting of blood
  • yellow urine

Medication

Know what medications you are on, how and when to take them and be aware of any potential side effects. Before starting any new medications it is important to check with your doctor that it is okay to take with any existing medications. This includes pain relief.

Paying for your prescriptions can work out very expensive. Try to reduce the cost by purchasing a ‘pre-payment certificate’. You can get an application form from your local chemist or at the NHS website.

Dental care

Don’t forget your teeth. Make regular appointments to see your dentist (approximately every 6 months). Keep up good oral hygiene by cleaning your teeth at least twice a day.

Should you require any invasive dental work you must advise your dentist of your liver condition, as they may wish to discuss your dental treatment with your medical consultant first. If you are on certain medications then you may need antibiotic cover for any major dental work.

Health and hygiene

General good hygiene and healthy eating are important for everyone and are a good way to help keep yourself well.

Exercise and activity

Sports have both immediate and long term effects by promoting physical and mental growth and development, so try to be involved where you can.

Rest and sleep

You may have noticed varying patterns in your need for rest and sleep. Proper relaxation at the end of a busy day is an important part of your health regime.

Positive mental health

Being part of a peer group and surrounding yourself with friends and family that you can be open with is important. If you ever feel worried, low in mood or that you would like to talk to someone else then please ask your specialist nurse, consultant, GP, school, college or university who should be able to help you find the right support for you.

Stress reduction

Multiple changes during your teenage years may cause extra stress.

Certain personalities within your peer group who appear more assertive than others may attempt to pressurise you into unhealthy experimentation with sex, alcohol, drugs and cigarettes. Find inner strength within yourself and avoid the temptation.

Another source of support can be found through the Children’s Liver Disease Foundation on 0121 212 3839 (in spite of the title there is no upper age limit) or www.cldf-focus.org.

Sunbathing

Everyone is at some risk of skin cancer and certain medications can slightly increase this risk. Follow simple skin care rules:

  • Use a high factor sun screen >25. Reapply frequently especially after swimming paying particular attention to prominent areas
  • Wear a hat to protect your head and neck
  • Wear a T-shirt to protect your shoulders
  • Try not to lie in the sun between the hours of 12 to 4pm.
  • If you go skiing you are still at risk, so protect your face and nose

Vaccinations

If you are on any medications that can suppress your immune system it is very important that you do not have any live vaccinations. If your GP or school have contacted to you say you are due for any immunisations or if you are going on holiday it is very important that you talk to your GP or practice nurse first to make sure these vaccinations are not live (inactivated). We would recommend that anyone on immunosuppressant medications does have the flu vaccine annually (inactivated version) through your GP.

Alcohol

You have a liver disease, respect it. Everything in moderation.

Smoking

Smoking is not recommended, however as an adult you have your own choices.

Remember if you have or are a carrier for certain conditions such as alpha-1 antitrypsin deficiency it is very important that you do not smoke.

Body piercing and tattoos

We cannot recommend that you go ahead with body piercing, as it is yet another route of infection. However, we would advise you totalk with your consultant before you go ahead.

Contraception

Safe, protected sex (using condoms wherever possible) is advised for everyone to protect themselves from STI’s.

If you are considering going on some form of contraception then it is a good idea to discuss this with your GP or practice nurse and make sure you tell them about your liver condition and what medications you are on as some forms of contraception may not be suitable for you.

Pregnancy

Pregnancy is a big step to take on for any couple and careful consideration must be taken before you conceive. Discuss your plans for pregnancy with your consultant first.

Further education

If you are going away to university or moving house remember to register with a new GP and dentist. You may also want to consider transferring your liver care to a hospital more local to university or arrange your appointments for when you are at home in the holidays.

If you go onto further education you will want to be involved with your peer group. However, if you are on immunosuppressants remember that you may be at risk of infection, so try to avoid living in digs with lots of other students, keep your room well ventilated, and as difficult as it may be, try to avoid staying in the Student Union bar for too long! It is important you remember to continue taking your medication.

Employment

If you require advice on a career, contact your local career advisor or attend the careers evening at your school.

If you have problems gaining employment due to certain restrictions related to your condition contact the Disability Employment Advisor – D.E.A. These people are very positive, can identify your strengths and possibly suggest suitable employment.

Benefits

You may be entitled to some form of financial benefits.

Alternatively ask to speak to our social work department for further advice.

Remember if you have any questions about any of the topics in this resource don’t be afraid to ask your specialist nurse or consultant who will be happy to discuss things with you.

Useful information

Careers

Drugs and alcohol

Studying

Healthy lifestyles

Feeling good about yourself

Emotional health (including anger)

Young people with chronic conditions

Liver support & info

Young peoples’ rights

www.getreadyforchange.org.uk

Education rights

Travel and transport

Sexual health

www.brook.org.uk

Bits and pieces

www.thehideout.org.uk

Discrimination

Bullying

www.bullying.co.uk

Even more

www.direct.gov.uk/en/youngpeople

Is something missing from this resource that you think should be included? Please let us know

Contact us

Disclaimer

Please note this is a generic information sheet relating to care at Sheffield Children’s. The details in this resource may not necessarily reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If you have specific questions about how this resource relates to your child, please ask your doctor.

Resource number: HP4

Resource Type: Article

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