Contents - Leeds Teaching Hospitals ...
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
What is transition?
Contents
1. What’s this folder for?
2. Your info
3. What is Transition?
4. Your journey through Transition
5. What will change for me?
6. Your Healthcare Team - Contact details
7. Your appointment
8. Ready, steady, go programme
9. Helpful info
► Condition information sheet
► Believe in yourself
► Friends and Family
► Talking things through
► Exercise and Mental Health
► How food affects your mood
► What is bullying?
► Relationships
► Alcohol and law
► Illegal drugs and legal highs
► Careers and employment advice
► Travel tips
► Useful links
10. The ready, steady, go transition plan
LN004209 Review date: 03/2021
What is transition?
1. Who is this folder for?
This folder is a resource to guide you, and there’s lots of information inside. We
don’t expect you to read it from cover to cover, more to use it at appointments
or to find answers or information about things as they become important to
you.
It would be helpful to bring this folder with you to your appointments. There is
a wallet at the rear of the folder so you can store your clinical letters and keep
you medical information together. You can...
Bring it to every ward admission, planned or
emergency. It will provide useful information to
the ward staff. 1
Bring it to every outpatient clinic. New
information or any change in medication can be
documented. 2
Take it on holiday. It provides information about
your condition and treatment. It will also have
a record of your hospital contact details, which
could prove useful if you become ill.
3
Use it as a personal record for yourself. You will
be sent a copy of the clinic letter sent to your GP.
Please file this in this folder. 5
This folder is your property and it is your responsibility to ensure that its
contents remain confidential. The hospital cannot take responsibility for the loss
of or the consequences of the loss of this folder.
LN004209 Review date: 03/2021
What is transition?
2. Your info
(please complete your details)
Personal Details
Name:
Hospital Unit Number:
Date of Birth: Sex: M / F
Address:
Diagnosis:
Home Telephone Number:
Mobile Number:
Next of Kin:
Consultant:
Family Doctor (GP):
Dentist:
School / College:
ECHP (Education Health & Care Plan)
LN004209 Review date: 03/2021
What is transition?
3. What is transition?
What is transition? Why do I have to move?
• In healthcare we use the word • As you get older, you may find that
transition to describe the process some of the things you want to
of preparing, planning and moving speak about or some of the care
from Children’s to Adult services you might need may be better
suited to an adult environment.
• Transition is a gradual process that
gives you and everyone involved • Adult services are used to dealing
with your health time to get ready with all sorts of things that may
to move to Adult services, this arise, such as higher education,
includes deciding which services travelling, sex and careers.
are best for you and where you will
receive that care • You may also find that you would
prefer to be seen in a more grown-
• Transition is about making a plan up environment instead of the
with you - and not about you! Children’s department/ward.
• We understand that moving away
from a team of doctors and nurses
that you have been with for many Where will I move to?
years can be scary but hopefully, by
getting involved in the transition • Part of transition is about looking
process, you will feel more ahead to where you healthcare
confident and happier about the needs will be best met and how this
move. will fit in with your future plans
• Your healthcare team will be able
to give you information to help you
When do I have to move? make the best decision
• The purpose of this leaflet is to get
you thinking about moving on and
preparing for it
• Take a look at the transition
journey to familiarise yourself with
a typical journey
• Your healthcare team will review
your readiness and aim for you to
move on to Adult services at the
age of 16
LN004209 Review date: 03/2021
What is transition?
Who can help me get ready?
This folder is filled with resources
and information to help you
prepare for moving on.
Working with your healthcare team
on the Ready, Steady, Go Program
will cover:
• Teaching you about your condition
or illness, its treatment and any
possible side effects
• When you are ready, seeing you
on your own for part of the clinic Your family
appointment and working towards
seeing you on your own for the • Your parents or carers can be really
whole clinic appointment important in looking after your
health and may be able to give you
• Making sure you know when to lots of helpful advice.
get help and who to contact in an
emergency • Try to talk to them and your health
care team about how you feel
• Helping you understand how your about moving on to adult care
condition or illness might affect and any questions or concerns you
your future education and career might have.
plans
• Also try to discuss practical issues
• Making sure you know about the relating to your health, such as
support networks available getting to appointments, obtaining
repeat prescriptions and asking
• Making sure you understand the
questions in clinic.
importance of a healthy lifestyle,
including exercise, diet, smoking • While transition is all about you,
and sex. it is important to realise that your
parents / carers may also be finding
the process difficult as now they
are handing over the responsibility
to you.
• This can be hard for many parents
/ carers and they may have worries
of their own.
• You may find talking to them
about your feelings, and allowing
them a chance to tell you how they
feel, will help you all through the
process.
LN004209 Review date: 03/2021
What is transition?
4. Your journey through Transition
Age What happens? What does it mean for me?
My clinic appointment is on a friday at
LGI
Get my transition pack
11 - 12 I start the ready, steady, go program to
Start coming to the
build confidence and knowledge and
adolescent clinic
meet with your Nurse Specialist & Youth
Worker
More in-depth discussions individually
Building my with your Nurse Specialist & Youth
knowledge & Worker
13 - 15
increasing my Continue to build my knowledge, skills
independence and confidence through the ready,
steady, go program
Review my readiness for handover
Given a handover date
Getting ready to move
15 - 16
to young adult services Meet young adult team and have a
tour around young adult inpatient/
outpatient areas
Last appointment in adolescent clinic at
LGI
Handover to the
16 Chance to say goodbye to children’s
young adult service
doctors and meet the young adult
doctor
My clinic appointment is on a Tuesday at
St James’s Hospital
Start to attend the 16- Continued support from your Nurse
16 - 25 24 young adult clinic Specialist & Youth Worker
at St James’s Hospital
When you feel ready you will move into
the adult clinic at Lincoln Wing
(St James’s)
LN004209 Review date: 03/2021
What is transition?
5. What will change for me?
Outpatient Clinic:
R EN’S SERV Outpatient Appointments:
ILD IC Starting to have 1-1 sessions
Leeds General Infirmary (LGI)
in the Martin Wing C-Floor H E with Nurse Specialist and Youth
Worker
C
S
• Starting the Ready, Steady, Go
Inpatient Ward: Transition Program
• More focus on building your skills
Ward 50 (LGI) and managing your liver condition
and increasing your responsibilities
• Encouraging you to speak about
The Children’s ward has questions and concerns you may
people aged from 0-16 years have
old admitted, you should see • Receiving information and having
some teenagers on the ward, conversations about growing up,
school, taking your medication etc.
although at times there may
be more younger children
Operations:
Liver Biopsy and Endoscopy
Members of your family are done under general anaesthetic
welcome to stay with you on the ward so you will be asleep
TRANSITION
/ ADULT
ULT
Outpatient Clinic: Outpatient Appointments:
Is at St James’s Hospital in the
D SE Starting to have 1-1 sessions
Bexley Wing A with Nurse Specialist and Youth
Worker
RV
NG
• Continue to build on self-
Inpatient Ward: management skills
ICE
YOU
Ward 83, St James’s Hospital • More focus on support around
vocation/education/employment
(Bexley Wing)
S
opportunities
• Encouraging you to communicate
The Adult’s ward has people aged with staff about questions and
16+ admitted, you should see concerns you may have
some young adults on the ward, • Receiving information and having
conversations about looking for a
although at times there may be job, emotional health and goals/
more adult’s and older adult’s ambitions after finishing high school
Operations:
Families still welcome to visit you
Liver Biopsy and Endoscopy done
on the ward, opportunity to discuss under local anaesthetic so you
flexibility with visiting times will be awake
You may not be transferred to Leeds for your ongoing care as a team closer to
you may be the best place to take over care. This decision will be made jointly
with your consultant. We will help you to find out about your new team and
prepare you to move.
LN004209 Review date: 03/2021
What is transition?
5. Your Health Care Team
Your parents/carer may have been managing your appointments, as you get older
you’ll probably start to take more responsibility for your own arrangements.
These contact details should help you to find the right person to contact.
Contact details for your information
Dr Mtegha - Paediatric Hepatologist - Secretary - (0113) 392 5583
Dr McClean - Paediatric Hepatologist - Secretary - (0113) 392 5158
Dr Sanjay Rajwal - Paediatric Hepatologist - (0113) 392 5158
Dr Davison - Paediatric Hepatologist - Secretary - (0113) 392 5640
Dr Claridge - Adult Hepatologist - Secretary - (0113) 206 6301
Dr Moore - Adult Hepatologist - Secretary - (0113) 206 7223
Ultrasound - (0113) 392 6549
Jackie Jennings & Kirsty Miles - Adult Nurse Specialist - (0113) 206 8509
Anokh Goodman - Youth Worker - 07827 807180
Lynne Henderson - Paediatric Nurse Specialist - (0113) 392 6138
Dr Kat Bilbrough - Senior Clinical Psychologist - (0113) 392 6796
Rosemary Rushworth - Children’s Social Worker
Ward 50 - Children’s Liver Ward (LGI) - (0113) 392 7410
Ward 83 - Adult Liver Ward (St James’s Hospital) - (0113) 206 9183
Anna Grisdale - Play Leader - a.grisdale@nhs.net
Megan Holmes - Play Leader - megan.holmes4@nhs.net
Neoma Jacobs - Play Leader - neoma.jacobs@nhs.net
Penny North-Lewis - Children’s Pharmacist
(Please contact Nurse Specialist if you want to get in touch with your pharmacist)
Dane Howard - Adult Pharmacist
(Please contact Nurse Specialist if you want to get in touch with your pharmacist)
LN004209 Review date: 03/2021
What is transition?
Clinical Nurse Specialists
Lynne Jacqueline
Henderson Jennings
(PAEDIATRIC LIVER &
SERVICES) Kirsty Miles
E Floor (ADULT LIVER
Martin Wing SERVICES)
Leeds General Infirmary
Leeds, LS1 3EX Bexley Wing
Telephone: 0113 392 6138 St. James’s University
Hospital
Email: lynne.henderson4@nhs.net
Leeds, LS9 7TF
Telephone: 0113 206 8509
As part of the Leeds Liver Team, who Email: jacquelinejennings@nhs.net
are also committed to co-ordinating and
making transition as stress free as possible
for young people and their parents/carers. We work as part of a multidisciplinary
team, both at St James’s Hospital and Leeds General Infirmary.
What we do
We advocate for young people healthy eating, weight safe in the Adult Liver Service.
who come into both the management and the However, here at Leeds we
Children’s Liver Ward and the importance of exercise. know that approaching
Adult Liver Service and support • Health damaging behaviours such an event can be a scary
them in the clinic setting. such as smoking, alcohol and experience for you and your
We help young people take substance misuse. parents/carers. Together we
responsibility for managing • Sexual and reproductive health can assess and discuss their
their own healthcare, which issues. readiness for transition to
involves education about their • Mental health and emotional adult services, helping to
medical conditions and reasons well-being also from part of the minimise any anxieties.
discussion.
for treatment. Following transfer to adult
In the Paediatric setting this All information discussed services you will continue
involves providing young is in strict confidence and to be offered support by
people with appropriate is only shared with other attending the Young Persons
knowledge regarding such health professionals if there Clinic until you feel ready
issues as: is a concern about a young to be seen within the adult
• Management of medicines,
person’s safety, this would clinic.
with parents/carers acting as however be discussed with
supervisors until the young the young person first.
person is considered ‘safe’ to Before handover to adult
take over the responsibility. services, we aim to ensure
• Healthy lifestyle choices, that you have the necessary
including discussions about skills to feel comfortable and
LN004209 Review date: 03/2021
What is transition?
Young Persons Key
Anokh Goodman
Youth Worker
Worker (Liver Services)
(LIVER SERVICES)
Dept of Clinical &
Health Psychology
Fielding House
St James’s Hospital
Beckett Street, Leeds, LS9 7TF
Providing support for young
Mobile: 07827 807180 people with a liver condition
Telephone: 0113 206 5897
Email: anokhgoodman@nhs.net
Fax: 20 64079
(only available 2 days per week)
Young Persons Key Worker of your life. I therefore accessing peer support
The role of the young persons have some insight of the I work across both the
key worker was created to impact it can have on your children’s and adult service so
provide appropriate support mental health, emotional can help you get to know the
for young people who have a wellbeing, confidence, family teams and them to know you
Liver condition. I work as part relationships, independence
Advocacy - I can support
of a multi-disciplinary team and life aspirations.
you to ensure your voice is
and can provide a range of I can offer a broad and heard and you are aware and
support. flexible service and have the involved in decisions which
ability to meet outside of the affect you. I can offer a link
Who can I support? hospital environment. between you and the hospital
I can provide emotional and to aid communication
practical support for young What you can expect?
Liaison with other agencies -
people (aged 12-25) who • To be treated with respect
such as Housing, Schools and
have a Liver condition and • Your views and opinions to be Health Professionals
attend the Leeds Teaching heard
Hospital, both inpatient and Practical support - Access
• Confidential support college, voluntary or work
outpatient. I work across
both sites, the Leeds General • To be spoken to in a clear, honest opportunities
Infirmary (LGI) and St James’s and non-judgemental way Emotional Support - just
Hospital. being available when you
Examples of the support I need to talk
What I do can offer Signposting - Helping you to
I work regularly with 1-1 Support - Confidential find appropriate help in your
young people who have support around any issues local area, such as counselling
a Liver condition, such as that you may be concerned services
someone who has had a about such as medication Confidential Support -
Liver transplant. I have side-effects, provide emotional Ensuring our dialogue is
an understanding of how support around mood and confidential and explaining
managing your health anxiety, confidence building, what this means
condition can impact support attending outpatient
on many other aspects appointments, support
LN004209 Review date: 03/2021What is transition?
Hospital Play Team
Providing preparation,
distraction and normalised play
Play team role showing medical procedures Examples of support we
The play involves a mixture that are available. The ward offer
of play leaders and play has access to WIFI and we • Desensitization and work
specialist who are based on have a variety of computer around needle phobia
the paediatric liver, gastro consoles and each bed has a
• Normalised play activities
and renal unit on ward 50, TV and a selection of DVD’s
can be accessed. • Preparation for procedures
Clarendon Wing at Leeds
General Infirmary. We cover We are available to • Distraction and coping methods
support you in outpatient for treatment and procedures
a 7 day service and support
children and young adults appointments as well as • Food play
until they have completed making referrals to attend • Input for help with taking
their transition. sessions with the play team medicines and swallowing
for 1-2-1 input around your tablets
Our role is to be an advocate
individual needs All our play team have are
for you and your family,
making your stay in hospital trained Autism Awareness
Who we support
a more positive experience and Disability Champions
We work with liver, gastro who can help with your
and to provide support,
and renal patients from individual needs and ensure
along with anything you
birth up until they have fully any reasonable adjustments
may need. We are here if
transitioned. Support and are made.
you just want some company
input for the whole family
or to talk about your
is included in this as we
condition, treatment and any
understand that this is often a
procedures.
journey for the whole family
What we do not just the patient.
As well as providing age Each paediatric area within
appropriate activities while the hospital will have its
on the ward we provide own team of play staff so we
distraction and preparation can liaise with these if you
for procedures. We have a have input for other medical
variety of books and photos conditions.
LN004209 Review date: 03/2021What is transition?
Rosemary
Rushworth Specialist Liver Social
Specialist
Social Worker
Worker (Liver Services)
(LIVER SERVICES)
Leeds General Infirmary
E Floor
Martin Wing
Leeds, LS1 3EX
Providing support for young
Telephone: 0113 392 3975/6
Email: rosemary.rushworth@leeds.gov.uk
people with a liver condition
The Liver and Renal Social caring for an ill child and the the information you have been
Workers anxiety this can cause. given and realize how this
I am part of the Regional We offer a broad and flexible will affect your child and your
Specialist Team and the service, therefore we will family. Providing appropriate
Liver Multi-disciplinary sometimes need to carry support throughout this
Team, providing appropriate out an Initial Assessment to stressful process.
support to the children/young gather information, in order Advocacy - We can offer a
people and their families/ to provide the appropriate link between the hospital and
carer’s, who attend the Liver support. This will involve us the home, to ensure the team
Unit due to their complex talking with you and your child are aware of how you are
health conditions. to identify areas where support coping and any areas where
may be needed. We may need your family may need further
Who can I support? to contact other agencies support.
I provide emotional and and professionals who are Liaison with other agencies
practical support for the involved with your child, such - Housing, Schools and Health
children/young people (aged as Schools, Health Visitors, etc. Professionals
0-17) and/or their parent/ We will ask your permission
Practical support - Access
carer, who have a complex to contact these professionals,
funding / Grants if families
liver condition, when they which will enable us to obtain
are undergoing financial
receive their medical care at a clear understanding of your
difficulties.
the Leeds General Infirmary. child’s/family’s situation.
Emotional Support - Just
All new referrals are discussed
Examples of the support I being available when you
at the multi-disciplinary team
can offer need to talk.
meetings to ensure that your
case meets our criteria. Benefit support - Assist with Bereavement Support -
applying for Disability Living Providing emotional and
What I do Allowance, Carer Allowance practical support for up to 12
I work regularly with the and other benefits where months, after the loss of a child.
children and young people appropriate. Signposting - If we are
who have a liver diagnosis. Hospital Discharge Planning - not the appropriate service
We have an understanding of To ensure you and your child or local support is more
how this can impact on the are appropriately supported, appropriate we will signpost
child/young person’s life and when your child leaves hospital to other relevant services
that of their family/carer. We after a long hospital stay. Safeguarding - Promoting
therefore have some insight Pre-Transplant Assessments the safety, wellbeing and
of the impact it can have - Carry out a multi disciplinary development of all children.
on family relationships, the assessment. Ensuring that you Being child focused, ensuring
financial/emotional strain of and your child are happy with that the child’s voice is heard.
LN004209 Review date: 03/2021What is transition?
Dr. Kat Senior Clinical
Bilbrough Psychologist
Senior Clinical
Psychologist (Liver Services)
(LIVER SERVICES)
St James’s University Hospital
Beckett Street
Leeds
LS9 7TF Providing Social, Emotional
Telephone: 0113 392 6796 and Physical Support
Senior Clinical Psychologist families together. I usually If I was worried about you
We know that it can be meet with people away from then I would try my best to
challenging managing all the medical team and this share my concerns and outline
the normal social, emotional gives us a chance to think the action I would need to
and physical changes which about how you think and take.
come with growing up and how you feel and to think
together of some strategies What you can expect:
being a teenager and that
having a chronic illness can that may help. • Confidential space to talk about
how you feel
add even more pressure. In When we talk it is
psychology we focus on how confidential and we work • Access to psychological
we think and how we feel together on thinking what therapies to work on specific
is useful to feed back to the difficulties
and work together to think
of strategies to cope with the medical team. The only time • Collaborative work, where we
extra challenges that having a we would share information work together to develop goals.
chronic illness can bring. with others is if there is
concern about your safety or
Who can I support? that of others around you.
I work with children, young
people and families from
diagnosis with a liver
condition right up until Social
the point they transition to
adult services. Unfortunately
we don’t have a named
psychologist for Liver for
those who have completed
transition just yet. However, I
SUPPORT
work closely with our young
person’s support worker to
identify local or appropriate
support for those who are in
the young person’s service.
What I do Physical Emotional
I provide psychological
therapies and emotional
support for young people,
their parents and sometimes
LN004209 Review date: 03/2021What is transition?
7. Your appointment
As you get older its important you are part
of the decision making process in managing
your health. the doctors will start to talk to
N T you more directly and your opinion counts!
ME We encourage you to see the youth worker
INT and nurse specialist alone for at least part
PO
AP
of your appointment, as people often find
it useful to speak one to one confidentially
about things they might be worried about.
Read
8. Ready, Steady, GO programme Steady y
prog
Go
ramme
We use a tool called Ready, Steady, GO to help you improve your skills at
managing your health and increasing your knowledge and independance
You will be guided through this tool by your Nurse Specialist and your Youth
Worker during your appointment. We will give you a copy to keep in your
folder and complete in your own time.
LN004209 Review date: 03/2021What is transition?
9. Helpful info This section
has information
about different aspects
which may affect you as you
get older.
If you have any questions you may
be able to find the answers in here. OVER
Information This information is very useful just TIME YOU
WILL COLLECT
for a quick glance, or for further
Sheets exploring in depth questions raised.
INFORMATION
ON:
At individual appointments
we may give you further
information to add to
your folder.
My liver Diet &
condition Exercise
Looking after
your feelings
& your
Careers / mental health
work
Drugs Alcohol
If you cannot find what
Sexual your looking for here
health & contact the CNS or Youth
Worker who will be able to offer
Bullying contraception further guidance.
If there is something we haven’t
discussed or you’re worried
about please let the team
know.
LN004209 Review date: 03/2021What is transition?
Leeds Paediatric Liver Unit information
sheet for young people who have had
a liver transplant
Immune System
Your immune system will recognise your new liver as being
“foreign”, not part of you and will try to fight it. This is why you
need to take regular medication to prevent this happening.
These anti-rejection medicines are also known as immunosuppressants.
You will have to take at least one immunosuppressent medicine for the rest of
your life to prevent rejection.
Rejection as prescribed, usually twice your doctor or chemist that
Rejection can a day 12 hours apart. The any new medicine, including
occur anytime, medication is also best taken medicines you buy over the
days, months or on an empty stomach. counter and herbal remedies
even years after are safe for you to take.
What to do if you forget to An antibiotic called
your transplant.
You may not take a dose of tacrolimus Erythromycin should not be
experience any If you miss your dose of taken if you are on Tacrolimus
symptoms during an episode Tacrolimus, it should be and you should avoid eating
of rejection. taken at least 6 hours before grapefruit or drinking
In fact, a change in your the next dose. If this is not grapefruit juice because it can
blood test result such as an possible then you should take affect the level of Tacrolimus
increase in one or two of your the next dose at the normal in your blood.
liver enzyme levels, may be time. Never take double doses Also, always check that you
the only sign of a rejection to make up for the doses you are taking the correct brand
episode. have missed. If you miss doses of Tacrolimus, as prescribed
of Tacrolimus on a regular by your doctor since switching
This is why it is so important basis it is likley to lead to an
to attend your clinic brands can affect your blood
episode of rejection, with results.
appointments and also to possible damage to your liver.
take control of your anti-
rejection medicines As time goes by, if your new
Medication
liver is working well, it may
be possible to reduce your Really???
dose of Tacrolimus.
The most
The liver is one of the
commonly Taking other medications
used most important organs in
with tacrolimus our body. It’s responsible
“immunosuppressant”
medicine following a liver Some medications can for breaking down the
transplant is Tacrolimus. increase or decrease your food we eat so that it
This works by blocking the Tacrolimus level in the is digested and releases
production of cells that attack blood. This may also increase
energy for performing
the new liver. It is important your risk of rejection so it
daily tasks.
to take your Tacrolimus dose is important to check with
LN004209 Review date: 03/2021What is transition?
Side effects of Tacrolimus after meals, but it is best if you stick to one or
Tacrolimus can cause many side effects the other. Try to take your dose at the same
including: time of the day, as this will help you to take
them regularly.
• Upset stomach
• Headaches Side effects of Mycophenolate Mofetil
• Shaking of the hands (tremors) The most common side effects of
• Hair loss on the head Mycophenolate include:
• Vivid dreams • Upset stomach (diarrhoea & vommiting
• Diabetes • Reduced white cell count (increasing your risk of
infection)
• High blood pressure
• Unexplained bruising
• Reduced kidney function
It is important to inform your liver team if
• Increased risk of skin cancer
you develop signs of infection whilst taking
• Increased risk of infections Mycophenolate Mofetil.
Mycophenolate can also harm an unborn
Prednisolone
child, so it is important for female patients not
This is another medicine that is given to become pregnant while you are taking this
following your transplant to prevent rejection medication. In male patients the medication
of your new liver. can also pass into the semen and may cause
It belongs to a group of medicines called birth defects in a child fathered during
corticosteroids which are not the same as treatment.
anabolic steroids, sometimes misused by body
builders. Taking other medications with
Prednisolone should be taken once a day in Mycophenolate Mofetil
the morning (when your body would normally Some medicines such as antacids, and some
produce steroids) preferably after or with your vitamin and iron preparations can interfere
breakfast to reduce the chance of indigestion. with the way that Mycophenolate works.
After taking Prednisolone for more than three Always check with your Liver Team or
weeks your body will stop producing its own pharmacist that any new medication is safe for
steroids, so it is important that if the dose is you to take.
reduced it is done slowly as advised by your
doctor.
Side effects of Prednisolone
Possible side effects of Prednisolone include:
• Upset stomach and indigestion
Really???
• Weight gain & rounded face
Your liver is your battery.
• Increased appetite It stocks up sugar and
• Diabetes whenever your body
• Increased risk of infections requires it.
• Thinning of the bones (osteoporosis)
You may notice some of these side affects
yourself. Any symptoms you are concerned
about should be mentioned to your liver team.
Mycophenolate Mofetil (MMF)
MMF is another type of anti-rejection
medicine that you may need to take following
your liver transplant.
You can take Mycophenolate either before or
LN004209 Review date: 03/2021What is transition?
Infections • DO
Apply the sunscreen at least 1-2 hours before
Immunosuppressent
going outdoors
medication
reduces your ability to • DO
Reapply your sunscreen 2-3 times a day when the
fight infection.
sun is particularly intense (even in England).
You should try to avoid
• DO
coming into contact with Regularly wear t-shirts, wear wide brimmed hats
people who have coughs or colds and any and sunglasses with UV protection.
other types of infections such as measles and
• DO
chickenpox, especially if you have not been
Regularly check your skin for spots, pink patches,
immunised against them. scaly growths, bleeding areas or moles that have
It is important to treat infections early when changed colour or shape.
taking immunosuppressant medication. Do • DO NOT
not hesitate to book an appointment with Use sunbeds to get a tan.
your GP if you have any health concerns, or
• DO NOT
alternatively contact you liver nurse (out of Sit in midday sun especially when abroad.
hours contact the Liver Ward).
Remember to mention ANY skin changes to
Please remember your personal and hand
your liver team as soon as possible.
hygiene are very important in reducing the
risk of infection following a liver transplant.
Dental health
Everyone’s’ mouth
carries germ’s especially
Really???
if your teeth and gums The average office desk is home to
are in poor condition.
20,000 germs per square inch and
It is important not to forget about cleaning harbors 400 times more germs than a
your teeth at least twice a day and about toilet which is cleaned regularly.
making regular appointments to see you
dentist (every 6 months).
Your dentist should be made aware that you
have had a liver transplant and that you are
taking anti-rejection medication.
Really???
Sometimes antibiotic cover may be necessary
if you are having major dental work done.
Sunbathing and the risks of skin cancer
The sun pumps out 386 billion
Immunosuppressant medications
gigawatts into space, mostly in the
do speed up tanning so you will
form of electomagnetic radiation.
suffer from sunburn if you do
not protect your skin. It is also
known that these medicines
make you more prone to
developing skin cancer.
Sun protection is the best way of
preventing skin cancer and the following
DO’s and DO NOT’s are reccommended.
Really???
• DO Humans have two sets of teeth
Apply high factor sunscreen (Factor 50) to all
exposed areas, including your face, ears, lips, neck
during their lifetime. By contrast,
and the backs of your hands, even on mildly sunny sharks have about 40.
days between April and September.
LN004209 Review date: 03/2021What is transition?
Life style issues: body art, tattoos & Liver Transplant
piercings Shohanna’s story
Any procedure that breaks the Shohanna Newman-Kidd likes
skin carries a risk of introducing dancing, running and painting
infection into your blood stream. rainbows, but she’s had to fight
hard to enjoy doing what other
Piercing that involves the
children take for granted.
nose, lip, tongue or navel
(belly button) carries more Shohanna was born in 1998
risk than piercing of the ears or eyebrows. without a bile duct, a condition called biliary
However both tattoos and body piercings are atresia, which meant her liver couldn’t work
discouraged because of the risk of infecting properly and poisons were building up in her
your new liver with viruses that cause system. When she was just four weeks old,
Hepatitis. Shohanna had the first of two operations
designed to correct the problem.
Her mother Deloris Newman recalls how her
daughter’s treatment dominated everything:
“She was on 12 medications, some three times a
day. I had to mix a special feed for her and insert
a feeding tube through her nose and into her
stomach. We hardly got out at all. She developed
rickets too, as a result of her liver problems.”
When Shohanna was two-and-a-half, her health
deteriorated. “The doctors said a liver transplant
was urgently needed. Within five days of her
going on the transplant list, we had a late night
call to say there was a liver for her,” says Deloris.
“We’d thought we might have to wait for years
and I felt we were going ahead of other children
who’d been waiting longer, but we were assured
Courtesy of http://www.britishlivertrust.org.uk
that it was all about who was the best possible
Smoking match.”
It is not advisable to smoke Shohanna had a split liver transplant. She
cigarettes before or after received the smaller lobe of a liver, while the
transplant. Smoking causes lung larger part was transplanted into an adult
damage making you more likely patient.
to develop chest infections, “I’m very proud of how she’s coped. She
especially when you are taking understands what’s happened to her, knows
immunosuppressants. about healthy eating and is happy to try any new
Smoking may also cause narrowing of the food. She also understands that she has to take
blood vessels that supply blood to your new it easy sometimes when her friends are racing
liver so it is important not to risk the success about. She’s even fine with the bitter taste of the
of your transplant. steroids and immunosuppressants. Sadly, she has
developed eczema, which is another battle for
her, but she manages.”
Deloris admits that when Shohanna was in
Really??? hospital for her operations it was hard to
imagine her going on outings, or taking part in
school sports days. “Every day was a bonus then.
Elaine Davidson is the “Most Pierced The doctors didn’t expect her to do so well, but
Woman” according to the Guinness she showed us all.”
World Records , as of March 2012, she
has over 9,000 piercings. Courtesy of NHS Choices
http://www.nhs.uk/Conditions/Liver-transplant/Pages/
Shohonnasstory.aspx
LN004209 Review date: 03/2021What is transition?
Believe in yourself
How you think of yourself day by day can be impacted by what is
going on around you. Its normal to feel more confident on some
days and in different situations.
Self-esteem is how you think about yourself, the opinion you have
of yourself. If you have low self-esteem, the thoughts you have
about yourself tend to be negative and focus on what you think
are your weaknesses.
Top tips to boost skills you have, talents that time with someone who
self-esteem you or others have noticed makes you feel rubbish
and write all these positive about yourself then spend
• In order to change your things down. This is good a bit less time with them
beliefs, you have to to look back on when and spend more time with
understand your negative you are having a bad day people who make you feel
beliefs. Think about what or when you are nervous good about yourself.
your weaknesses are, when about something such as
you started to feel like this; • Take up a positive hobby.
an exam.
can you identify something • Set yourself an aim –
that has happened that • Having low self-esteem maybe a sponsored walk
might have caused you to can affect work, personal for charity which will
feel like this? relationships and your make you feel good about
social life so it is important yourself.
• Once you have identified to tackle low self-esteem to
the negative beliefs, gather boost positive thinking and
evidence to challenge this Courtesy of Young Minds,
positive mental wellbeing.
and write them down so http://www.youngminds.org.uk
you have a list as evidence • Friends and family – look
when you are feeling at the people you have
down. For example, if you around you on a regular
feel you are unattractive, basis and think about how
note it down when you they make you feel. If you
receive a compliment from are spending a lot of
someone that says you look
pretty or they like your
new haircut.
• Positive thinking exercises
– write down the things
you like about yourself.
Think about your best
feature and write it down –
I like my eyes, for example.
Think about things you
have achieved and add
them to the list. Think
about nice things you have
done for other people,
LN004209 Review date: 03/2021What is transition?
Friends and Family
If you’re feeling low, friends and family
can be vital sources of support and can
help you cope with stressful situations
and difficult times.
You may feel that people help you by talking things to know you are not
won’t understand but through, being there on your own and
often people surprise for you or providing surrounding yourself
you. They may have emotional support. with friends and family
experienced difficult People who are close to can help.
times themselves and you will notice changes Sometimes treatment for
be able to offer advice. in your mood. They will mental health problems
But it is important to probably know if you are such as cognitive
remember that, for most not feeling your best. behavioural therapy
people, your friends and introduces coping
family care about you They can help you with
practical support and strategies and your
and will want what’s best friends and family can
for you and will want to also emotional support
– for example, with help you to devise these
help you if they can. and support you with
practical support if you
When you are feeling have a party that you feel them.
down or having a hard you have to go to but
time, it is important to feel uncomfortable going Courtesy of Young Minds,
spend time with other on your own, a friend can
http://www.youngminds.org.uk
people. Spending too go with you. Emotionally,
much time on your own if you feel uncomfortable
can sometimes make you going to see a doctor and
feel worse. talking about a mental
health problem, a friend
How Friends and
or family member could
Family can help go with you to help you
You can talk over to get across how you are
problems or things that feeling or just be there
are bothering you or with you.
talk about how you are
feeling. Sometimes if you are
experiencing a difficult
If you are stressed or time, it is important
feeling low, they can
LN004209 Review date: 03/2021What is transition?
Talking things through
Top tips on talking things through
Top tips
How to feel comfortable talking about the two of you for now, make sure
your problems. the person you are talking to knows
• Pick a time that is good for you both, this.
where you both have enough time to Most people will have someone who
have this conversation properly and they can talk to, either a friend or a
without being interrupted. family member. If you really feel you
• Go somewhere to talk where it don’t have anybody to talk to, you
is quiet and you will be able to may want to join an online forum
concentrate. where people are experiencing similar
situations to you; for example, www.
• Explain how you are feeling and any vik.org.uk or ring a helpline.
concerns you may have.
• Ask for advice or support and
explain what this friend of family
TALK
member can do to help. Often
LET’S
friends and families can feel helpless
and don’t know what is the best way
to help so can either go overboard
and overwhelm you or give you
space which can make you feel like
they don’t care. If you are clear
about how they can help you it will
make the situation easier for both
of you. For example, you might
Courtesy of Young Minds,
say, “I am worried that I am feeling http://www.youngminds.org.uk
depressed, would you come to the
doctors with me to discuss this?”
• Make it clear if you do not want this
person to say anything to anybody
else. If you want to keep it between
LN004209 Review date: 03/2021What is transition?
LN004209 Review date: 03/2021What is transition?
LN004209 Review date: 03/2021What is transition?
Exercise and Mental Health
Everyone knows that exercise is good for
your body - but did you know that it’s
important for your mental health, too?
Scientists have discovered that 10- or 15- minute sessions. Choose
exercise makes your brain release something you enjoy - if you hate it,
chemicals that make you feel good - you won’t stick to it. Find something
the same chemicals that you get from that fits into your day and is right for
antidepressants. For mild depression, you.
research shows that physical activity Of course, when you’re feeling down,
can be as good as antidepressants or exercise is often the last thing you
psychological treatments like cognitive feel like doing. That’s why it’s useful
behavioural therapy (CBT). to exercise with a friend, so you can
motivate each other. Set goals and
How much exercise?
measure your progress, so you can see
For good mental health, you should the difference it makes.
aim to do at least 30 minutes of
moderate exercise, five days a
Courtesy of Young Minds,
week. Don’t panic - this isn’t as bad http://www.youngminds.org.uk
as it sounds! The key word here is
moderate.
Moderate exercise means you’re
working hard enough to raise your
heart rate and break a sweat, but you
can still talk. It could include things like:
• walking the dog
• riding your bike
• skateboarding or roller-blading
• walking to college instead of
Really???
getting the bus, or getting off a few Exercising regularly increases the
stops early. serotonin levels in your brain to
increase feelings of well being.
You can do it as one 30-minute
session, or break it up into shorter
LN004209 Review date: 03/2021What is transition?
How food affects your mood
Did you know good food is good for your mood? It’s not just your
body you’re feeding - your mind is affected by what you eat, too.
There is increasing evidence of a link between what we eat and
how we feel. This is called the ‘food – mood’ connection. How we
feel influences what we choose to eat or drink – and a healthy diet
can protect our mental health.
Blood sugar depression, apathy, lack of • Crisps, ice creams and sweets
motivation or tension. should be kept as an occasional
Glucose from the
treat.
carbohydrate-containing foods
Good Fats • Buy fruits and vegetables in
we eat provides the brain’s
Essential fats, found mainly season, when they’re cheaper.
main source of fuel. Without
in oily fish, seeds and nuts, • Buy fresh foods such as fruit,
this fuel, we can’t think clearly.
cannot be made within the vegetables and meats in small
Some carbs are better than amounts and more often since
others. Sugar, white pasta and body, so we have to get them
they go off easily.
biscuits will only give you a from food. Sixty per cent
of the brain is made of fat, • Avoid tinned foods as they’re
short burst of energy. You’ll usually more expensive. For
feel tired and grumpy when and the fats we eat directly
example, dried beans and pasta
the sugar high wears off. affect its structure. A lack are less expensive than canned
“Complex carbohydrates”, of omega-3 fatty acids has beans and processed pasta.
such as wholegrains, beans been linked to various mental
• Avoid fizzy drinks and fruit juices.
and vegetables, are a better health problems, including They are often quite expensive.
choice because they give you depression and lack of Use water and fruit instead.
sustained energy. concentration. • Compare prices in local shops
If you eat lots of sugary foods, and supermarkets and take
Brain food: Top tips advantage of special offers.
fizzy drinks and stimulants
• Don’t skip meals. Eat three • Use “generic” supermarket
such as coffee, tea or alcohol, meals a day with two ‘healthy’
your blood sugar levels go brands instead of classic brands.
snacks (for example fruit or They often contain the same
up and down. This can make yoghurt) in between. ingredients but are cheaper.
you irritable, anxious, and • Eat breakfast within an hour of
dizzy, It can also lead to poor • Cook and eat together with
waking up. Never skip breakfast. others and share the costs.
concentration and aggressive • Try to have at least five portions
behaviour. • Make a shopping list and plan
of fruit and vegetables every day. your food budget every week. If
• Try to drink 6-8 glasses of water you feel you cannot do this on
Protein every day. your own, ask for help.
Proteins found mainly in
meat, fish and soya products Eat well on a budget
are broken down in the body Good food doesn’t have to
Really???
to be used as amino acids, break the bank. The Royal Water improves every single
which are vital to good mental College of Psychiatrists has bodily function, including
health. Brain messengers are quick thinking and focus.
these tips for brain food on a
made in the body from the budget.
proteins that we eat.
• Avoid ready meals and Courtesy of Young Minds,
If we don’t get enough amino takeaways. They are usually bad
acids can lead to feelings of http://www.youngminds.org.uk
for you and poor value for money.
LN004209 Review date: 03/2021What is transition?
What is bullying?
Disabilist
Homophobic
Racist Verbal Physical
Bullying is where someone hurts you
either physically, by hitting or kicking you, Cyber Rumours
or verbally by calling you names or teasing Excluding Sexist
you. Bullying can be done in a number of
ways.
Someone might be Racist bullying clothes. Sometimes there is
bullying you if they are: People may bully you because no particular reason at all
• Calling you names of the colour of your skin so for someone to bully you.
would call you horrible names Sometimes the bullying
• Spreading lies about you is a one-off. Other times,
linked to your skin colour.
• Teasing you someone can bully someone
Sizeist bullying else for a long period of time.
• Hitting or kicking you and
causing you physical pain Someone may bully you Around 70 per cent of young
because of your size, calling people have been bullied
• Pushing or pulling you about
you ‘fat’ or ‘skinny’ as an at one time and one million
• Taking your money or insult. children are bullied every
possessions week.
• Leaving you out or excluding Sexist bullying Bullying can upset you, hurt
you People bully you for being you, make you feel isolated
the opposite sex, calling you and worthless, lonely, lack in
• Threatening or intimidating
‘weak’ if you are a girl for confidence, anxious and angry.
you
example. Being bullied can affect your
• Texting you horrible People may also bully you if mental health. People who
messages you are different to them, are being bullied can develop
• Filming you on their mobile if you look different and other problems such as
phones and spreading it have a different colour hair depression, anxiety and eating
about or wear glasses. People problems and may self harm
sometimes bully other people or turn to drugs and alcohol.
• Sending you horrible emails
or messages on Facebook from where they come from Bullying in any form is hurtful
and other social networking or their social class so may and unacceptable.
websites. call you a ‘chav’ or a ‘snob’. If you are being bullied, you
People also bully other people need to talk to someone and
There are other types of more if they are not as intelligent
specific bullying. get help.
as them – or if they are more
intelligent than them.
Homophobic bullying
Courtesy of Young Minds,
Somebody may bully you if Anyone can be bullied http://www.youngminds.org.uk
you are of a different sexual Sometimes people pick on
orientation to them, for something that makes you
example someone straight different to everyone else
might bully you if you are gay or if you wear different
and call you ‘gay’ as an insult.
LN004209 Review date: 03/2021What is transition?
Bullying help • Friend In extreme cases, if
Don’t ignore bullying, • Parents’ friend bullying is interfering
it won’t go away. If • Teacher with your education and
you are being bullied, making you miserable it
• School counsellor
it can be making your may be possible for you
life really miserable • Youth worker to change schools if it
and you need to talk to • School nurse doesn’t stop once you
someone about what is • Mentor have reported it.
happening. If the bullying is going If you are being bullied
Ideally you should talk on at school, the school online on websites
to your parents or carers should operate an anti- such as Facebook you
or your teacher if the bullying policy. Maybe can report it using the
bullying is happening your teacher doesn’t CEOP button (Child
at school. If you can’t know you are being Exploitation and Online
talk to your parents or bullied. Protection Centre)
teacher, a friend could button.
Keep telling people until
maybe talk to them it stops. The bullying
for you. You must tell may not stop the first
someone though. time you tell your
You might want to talk to: parents or teacher and
they try and put a stop
• Parents
to it. If it continues, tell
• Grandparents your parents or teacher
• Auntie or other relative again.
In the end we will remember
not the words of our enemies
but the silence of our friends
Martin Luther King Jr.
LN004209 Review date: 03/2021What is transition?
Contacts: FRANK
Freephone 0800 77 66 00 (24
hour service, free if call from
a landline and won’t show up
on the phone bill, provides
translation for non-English
CHILDLINE speakers) YOUTH ACCESS
www.talktofrank.com,
Freephone 0800 1111 (24 hours) Visit www.youthaccess.org.uk to
Confidential information and search their directory of services for
www.childline.org.uk | online advice for anyone concerned help in your area.
chat | message boards about their own or someone Signposting service: 0208 772 9900
else’s drug or solvent misuse. (Mon – Fri from 9am-1pm & 2-5pm)
Childline is the UK’s free
helpline for children and young A national membership organisation
people. It provides confidential for youth information, advice and
telephone counselling service counselling agencies. Provides
information on youth agencies to
for any child with a problem. It STONEWALL children aged 11-25 and their carers
comforts, advises and protects.
but does not provide direct advice.
What’s in my area?
Use Stonewall’s area database
GET CONNECTED to find local lesbian, gay, and CHILDREN’S LEGAL
Freephone 0808 808 4994 bisexual community groups, CENTRE
(7 days a week 1pm-11pm) other generic services, and gay
www.getconnected.org.uk friendly solicitors. Child Law Advice Line 08088
020 008 (freephone)
Free, confidential telephone and www.lawstuff.org.uk
email helpline finding young
people the best help whatever The Children’s Legal Centre is a
the problem. Provides free charity that promotes children’s
connections to local or national rights and gives legal advice
services, and can text information B-EAT YOUTH and representation to children
to callers’ mobile phones. HELPLINE and young people.
0845 634 7650
(Monday to Friday evenings
from 4.30pm to 8.30pm and
HEADMEDS Saturdays 1.00pm - 4.30pm) YOUNGMINDS.ORG.UK
Email fyp@b-eat.co.uk
www.headmeds.org.uk YoungMinds is the UK’s leading
Online community Information, charity committed to improving
Straight talk on mental health help and support for anyone
medication. Look up your the emotional wellbeing and
affected by eating disorders. mental health of children and
medication to find out about
side effects and things you young people.
might not feel comfortable
asking your GP about, and listen
to other people’s experiences. THESITE.ORG
TheSite.org is an online guide
to life for 16 to 25 year-olds.
SAMARITANS It provides non-judgemental LEEDS.GOV.UK
support and information
LCC has made a youth promise to
on everything from sex and
Tel: 08457 90 90 90 ensure that all young people have:
exam stress to debt and
(24 hrs 7 days a week) • Something to do
drugs.
• Someone to talk to
www.samaritans.org • Somewhere to go to
• Something to say
Samaritans volunteers listen
in confidence to anyone in That’s where the Youth Service
any type of emotional distress, comes in. We have loads going on
including sports, arts and IT clubs.
without judging or telling
We have local centres and 5 Youth
people what to do. Hubs with excellent facilities.
LN004209 Review date: 03/2021What is transition?
Relationships
Advice and information on puberty, sex and contraception.
Puberty
Having a liver condition or a
Puberty can start between the ages of
transplant may mean that these
nine and eighteen and can continue
changes happen later than they do in
until your early 20s. Changes happen
others as you need good liver function
to everyone at different times and to
to get the right level of hormones
different degrees. Some of the changes
in your body to start puberty. Your
that happen to boys are that they get
liver team will probably ask you
taller, grow facial hair and their voice
some personal questions relating to
breaks. Girl’s breasts get bigger, they start
puberty at your appointments. Don’t
having periods and some people may get
be alarmed or embarrassed, they are
spots.
doing this to ensure you’re getting all
As you go through puberty, your feelings the right help you need.
may also change. Sometimes you may
feel sad and not understood but equally, Some key facts you need to know
you may feel happy and relaxed. During about puberty with a liver condition
this time you may also start to explore • Females who develop a liver condition
your sexual identity. The reason for all after puberty has started may find
these changes is down to your hormones. that their periods become irregular
Growing up is never easy, but with a liver or they may stop completely. If this
condition you may well have more to deal happens, you must speak to someone
with than most teenagers. in your liver team. Don’t be concerned
if they don’t return to normal until
So, what are hormones? after your treatment has started or
They are chemical substances that act like you’ve had a liver transplant.
messenger molecules in the body. After • Males who have a badly damaged
being made in one part of the body, they liver will often have low hormone
travel to other parts of the body where levels (see The Pregnancy and Fertility
they help control how cells and organs do section on page x).
their work.
If you’re concerned about anything to do with this stage in your life don’t hesitate to
contact someone in your liver team as it’s really common to have lots of questions.
Don’t be embarrassed as your doctors and nurses will have heard it all before. You
might find it easier to talk to a doctor or nurse who is the same gender as you. You
can ask for this, although it’s not always possible.
LN004209 Review date: 03/2021You can also read
