Download Transition passport for metabolic patients

Transition Passport
for Metabolic
Patients
Version 3.0. Date: 16/08/2013
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A booklet to aid young people through the transition from
paediatric to adult services
Contents
1. Introduction to the Adult Service
2. Introduction to transition
 What is transition?
 Brief overview of different transition and assessments through Health,
Education and Social care
 Changes to finances
3. Questions I may have about transition
4. Personal details
5. About my family
6. List of people I would like to be involved in my transition
7. Homecare
8. Medical information
9. List of doctors involved in my care - Paediatric and Adult
10. Dietetic input
11. Pharmacy
12. Transition checklist
13. What do you know about your health?
14. Medical check list
15. Additional Information
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Paediatric to Adult care
This is a patient held record meaning you will hold the only copy and can complete
as little or as much of it as you choose in the patient section. The patient section
covers the first 17 pages and provides information about transition and also some
details for you to complete to help us to plan your transition better.
The following pages are for all the people involved in your transition to complete if
they wish to. This will mean you have a copy of all the relevant information with you
that you can show when and wherever you access services.
This is entirely voluntary but we feel will be to your benefit.
Salford Royal Hospital
Welcome to the Adult Service!
We are based at:
Salford Royal NHS Foundation Trust Hospital,
The Mark Holland Metabolic Unit,
2nd floor, NW2, Ladywell Building,
Stott Lane,
Salford,
Manchester,
M6 8HD,
Appointments only: 01612064365
Clinical helpline: 01612061899
E-mail: [email protected]
The opening hours of the department are Monday – Friday 9-5pm. Out of hour’s
messages can be left on the clinical helpline and we will respond within the next
working day. If unwell outside of these hours you will be asked to contact your GP or
attend the local emergency department. The DOCTOR assessing you can speak to
the metabolic consultant on call by ringing the hospital switchboard on 0161789
7373 and ask for the Metabolic Consultant on call. Please note that until you attend
an appointment at Salford Royal hospital you are still under the care of the children’s
hospital and therefore should follow their out of hours procedure.
Our team includes consultant doctors, specialist nurse, nurses, dieticians, research
team, pharmacist, physiotherapists, health care assistant, and administrative staff.
The transition team includes – a consultant in transitional health care, a specialist
nurse with adult & paediatric background and a nurse with a learning disability
qualification.
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We have multi-disciplinary clinic appointments and therefore you may be seen by
more than one clinician, so please allow a minimum of 2 hours for your clinic
appointment. Should you wish to change or cancel this appointment please contact
us on 0161 206 4365 between 9.00am and 4.00pm so that we can re-arrange your
appointment. Outside of these hours you can leave a message on our answer
phone. It is very important that you notify the team 14 days before your appointment
is due if you cannot attend so that your slot can be given to another patient.
Please note: We recommend that you use the central park, as this is located near to
our clinics, there is a charge for Car Parking, please see our website for rates at
www.srht.nhs.uk. (There is a car park map attached in the appendix of this
document.)
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Introduction to Transition
Moving from paediatric to adult services can seem very frightening but it doesn’t
have to be. The aim of this booklet is to support you and your family through
transition, promoting independence and giving you the tools to ensure that adult
services have as much information about you. The information and knowledge you
all have about yourselves and your care needs can help inform medical teams,
enabling them to understand not just your medical needs but you as a person.
What is transition?
The Department of Health describe transition as events that “occur throughout life
and are faced by all young people as they progress, from childhood through puberty
and adolescence to adulthood; from immaturity to maturity and from dependence to
independence. In addition, some young people experience extra transitions as a
result of other life events for example, disability, bereavement, separation from
parents and being placed in care” (Department of health / child health and maternity
services branch 2006).
Transition is a natural part of growing up. It is the opportunity where possible, for
young people to take responsibility for their own lives including healthcare choices.
However, young people have to go through different transitions at different times and
can find the process very stressful.
Change can be difficult and even if it is positive or negative can cause some stress
on the mind, body and spirit. Although the word transition signifies change, if planned
well and the right information and support offered it can be a positive experience.
Sadly for many this has not been the case and when we have experienced change
that has been negative and unsettling we may have been left with a mixture of
feelings.
We recognise that young people along with their families pass through an intense
few years where many aspects of their lives change and that all these changes bring
in new people, new styles of communication and new working relationships. Building
a rapport and a common understanding takes time, while this is happening, families
and young people can become highly anxious.
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Time line of different transitions
HEALTH
Transition planning in health can happen at different times depending on structure and the
needs of the young person. It also depends highly on when a young person has to transfer
to an adult centre. For many this happens at 16 years but for some it can be as late as 18 /
19 years. Best practice states that transition planning should be introduced at 12 years and
regularly reviewed with dedicated transition appointments being made.
EDUCATION
Educational transition reviews start at 14 years. This is the time when important
decisions are made about education and job prospects and can also look at
relationships and leaving home. It should encompass a joint approach from all
supporting agencies and professionals involved with the young person. For example
education, health, social services, advocacy groups, specialist support groups and
connexions service which is an organisation that specifically provides impartial
information, advice and support to young people about their future options.
SOCIALCARE
The transition from child to adult services can happen any time between the ages of
16 – 25 years. These different transitions bring a number of new assessments that
young people and families need to take part in. Young people need to be prepared to
be asked a number of questions and that will overlap across different services. It
may be a good idea to start a portfolio of information that you can hand over to
different services, which will hopefully limit the level of repetition and responsibility
for you to have to recapture information that you have shared previously. Some of
the assessments you may be asked to complete are;
PERSON CENTRED PLANNING – Is a way of planning for the future. It is a
continuous assessment and setting of plans and should be reviewed and carried on
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throughout a person’s adult life. Its aim is to map out goals for the future and to help
you achieve personal goals.
HEALTH ACTION PLAN – When leaving school, health checks and plans should be
started, stating your health needs and how these need to be managed in the short
and long term. It is a plan that can follow you and can be changed or adapted to
reflect your changing health needs.
SECTION 140 ASSESSMENTS – This could be carried out any time between the
ages of 16 – 19 years, depending on when you leave education. This should look at
your future needs and social care services should be informed as other services may
need to be put in place.
SOCIAL CARE ASSESSMENTS/ COMMUNITY ASSESSMENTS/ CARER’S
ASSESSMENT/ COMMON FRAMEWORK ASSESSMENTS - These are usually coordinated by social care services but all supporting agencies should contribute. They
are undertaken with you and can include families where appropriate. They are to
look at all aspects of your life and should include the following areas;- Education /
College / Work /Housing / Benefits / transport/ respite / short breaks /carers needs/
psycho social issues/ Independent living.
CHANGES TO MY FINANCES
At 16 years, benefits may change and can move from parental to individual control.
This is optional and for those of you who have capacity, you may decide to take this
forward yourself. You may also be entitled to apply for other benefits, especially if
you are moving into full time education or are unable to work.
The benefits that this can affect are; Disability Living Allowance; Disabled Students
Allowance; Employment Support Allowance, Income Support and Housing Benefit.
This is not an exhaustive list and your benefits will be based on your individual need
and assessment.
Direct payments may be offered after an assessment has been made and needs
have been identified. It would mean that if services were needed to support you or
your carer then they would not be provided directly by social services and
responsibility would transfer to you or your carer to employ services through these
direct payments. Some local authorities provide individualised budgets. They provide
individuals who currently receive services with more control and choice over the
services they need.
Further information can be gained from your local citizen’s advice bureau.
Alternatively you can make an appointment with your local Department of Social
Security office.
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Questions I may have about transition
Below is a list of possible questions that you may have about transition. We have left
space at the bottom for you to add your own. It is important that you are able to ask
the medical teams questions. If you do not feel confident to do this yourself it is ok to
ask someone else or you could write them down or even email them across.
1.
2.
3.
4.
5.
6.
When will I transfer to the adult service?
How long will this transition phase take?
Will I be introduced to the adult team before I transfer?
Will I be able to visit the adult service before I officially transfer?
Will I have a key worker to support me through this phase?
Will the adult doctor communicate with me in the same way as my current
doctor?
7. How will adult service provision differ from that provided to me currently?
8. Will the adult doctor have the same knowledge about my condition as my
current doctor?
9. How will my medical notes be transferred?
10. Can a parent attend my appointments with me?
11. Who will the appointment letters be addressed to?
12. Will there be joint clinics with opportunities to meet other young people?
13. Will my appointments with various specialists be in the same hospital?
14. Is it easy to park at the new hospital?
15. What are the wards like?
16. Will the wards allow a parent to stay if necessary?
17. Much of the equipment I need is equivalent to that used by children, will they
have this available on an adult ward.
18. Will the specialist doctor liaise with the ward over my healthcare?
19. Will I still be able to ask for supporting letters etc. for issues I may have
socially?
20. Will I be treated as an adult?
The box below is for you to write the questions that you specifically have in relation
to your transition. If you are not able to ask the medical teams directly you can show
them the questions that you have?
1.________________________________________________________________________________
2.________________________________________________________________________________
3.________________________________________________________________________________
4.________________________________________________________________________________
5.________________________________________________________________________________
6.________________________________________________________________________________
7.________________________________________________________________________________
8.________________________________________________________________________________
9.________________________________________________________________________________
10._______________________________________________________________________________
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PERSONAL DETAILS
Title_________________
Full name__________________________________________________
Any other names you may be known by (i.e. nickname)
_____________________________________
How would you like to be addressed at your appointments? i.e. by first name
Date of birth____________________
Sex (Male or Female)_________________________
Address_____________________________________________________________
___________________________________________________________________
Email address_________________________________
Telephone____________________________________
Mobile phone_________________________________
In respect of correspondences, who would you like us to speak to / contact (i.e.; you,
your parents). How would you like to be contacted? (i.e. E-mail, Letter)
___________________________________________________________________
___________________________________________________________________
HOUSING
Who do you live with?
_______________________________________________________________
Type of accommodation (house / flat / bungalow / shared housing)
__________________________________________________________________
Has your home been adapted or had any equipment installed to meet your needs?
(Please list what has been done)
___________________________________________________________________
___________________________________________________________________
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INTERESTS/HOBBIES
Please give details of any hobbies or interests you may have __________________
___________________________________________________________________
___________________________________________________________________
RELIGION
Do you have any religious beliefs?
___________________________________________________________________
Please state your religion.
___________________________________________________________________
Is there anything regarding your religion that could affect the types of medical care
you receive? (E.g. Jehovah witnesses may not agree to blood transfusions)
___________________________________________________________________
___________________________________________________________________
ETHNICITY
A) White
□ English
□ Welsh
□ Scottish
□ Irish
□ Northern Irish
□ Any other White background, please specify ……………………………………………………
B) Mixed
□ White and Black Caribbean
□ White and Asian
□ White and Black African
□ Any other Mixed background, please specify ……………………………………………………
C) Asian, Asian British, Asian English, Asian Scottish or Asian Welsh
□ Indian
□ Pakistani
□ Bangladeshi
□ Any other Asian background, please specify ……………………………………………………
D) Black, Black British, Black English, Black Scottish or Black Welsh
□ Caribbean
□ African
□ Any other Black background, please specify ……………………………………………………
E) Chinese, Chinese British, Chinese English, Chinese Scottish, Chinese Welsh or
Other Ethnic Group
□ Chinese
□ Any other Chinese background, please specify ………………………………………………..
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LANGUAGE
What is your first language?
_________________________________________________________
If English is not your first language, would you require an Interpreter at
appointments? (If yes, please list what language they would need to
speak)______________________________________________________________
MEDICAL
Diagnosis _________________________________________________
Date of diagnosis___________________________________________
Where was your diagnosis made?
_______________________________________________
Name of specialist hospital?
____________________________________________________________
Please list any operations you have had and where they were done? ____________
___________________________________________________________________
__________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Have there been any particular problems with anaesthetics during operations? (If
yes, please describe)
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Have you been on any clinical trials? (If yes then give place and dates and type of
trial)
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Are you on any enzyme replacement therapy? (Please specify)
___________________________________________________________________
___________________________________________________________________
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If yes where is it given and by whom? (Please give details)
___________________________________________________________________
__________________________________________________________________
Are you hearing impaired or have hearing problems?
___________________________________________________________________
___________________________________________________________________
Do you have any visual problems or are you classed as visually impaired or blind?
___________________________________________________________________
___________________________________________________________________
Do you have any mobility problems? (Please list any support you need, including
whether you use a wheelchair and whether any special assistance would be required
for you to attend your appointments)
Do you have a learning disability or autism? (If yes please answer the below, if no
please continue to about education)
If you have a learning disability please answer the following:
1. Do you have a diagnosis of a learning disability?
___________________________________________________________________
2. What degree of learning disability do you have? (mild, moderate, severe or
profound)
______________________________________________________________
3. How old were you when you were diagnosed?
______________________________________________________________
4. Was your diagnosis of learning disabilities related to your metabolic condition?
___________________________________________________________________
If you have autism please answer the following:
1.
Do you have a diagnosis of autism?
______________________________________________________________
2.
Where is your diagnosis on the autism spectrum?
______________________________________________________________
3.
How old were you when you were diagnosed?
______________________________________________________________
4.
Where were you diagnosed and who diagnosed you?
______________________________________________________________
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Please list below any other medical history or medical problems that would be useful
to share (e.g. other conditions)
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Are you able to travel by yourself to appointments? (Please give details on how you
would be travelling)
___________________________________________________________________
___________________________________________________________________
EDUCATION
Please list schools attended?
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Do/ did you have additional help at school and if yes what type of help? (for example
help with writing or typing, getting around school).
___________________________________________________________________
Do you have a statement of educational needs?
___________________________________________________________________
___________________________________________________________________
Have the options for when you leave school been discussed?
___________________________________________________________________
Do/ Did you have any behavioural or mental problems at school?
Give any qualifications either obtained/ or currently studying in school/college etc. (if
relevant).
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Please give details of any work experience obtained / or work placements you have
undertaken, including voluntary work.
___________________________________________________________________
___________________________________________________________________
Do you have any plans for future training, further education or work placements?
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
CARE
How do you communicate? (E.g. verbally, makaton, gestures, sounds)
___________________________________________________________________
___________________________________________________________________
What professional(s) do you have involved in your care? (e.g. social worker,
community nurse, physiotherapist, speech and language therapist), if so then please
give their name and number.
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Have the above professionals begun your transition process?
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Are you able to fill in forms yourself? (Please indicate any support you may need)
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
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Are you able to look after your own finances? (Please indicate any support you may
need)
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Are you receiving any benefits e.g. Disability living allowance, Employment and
Support Allowance, Income support / Incapacity benefit? (Please list below and
where applicable which rate i.e.; low / middle or high)
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
If yes then are these benefits paid to you or a parent? (If you are looking at
transferring who the benefits are paid to, please give details below).
___________________________________________________________________
___________________________________________________________________
Does anyone receive carer’s allowance to look after you? (Please give details)
Have you spent any time in respite, hospice or other care? (If yes, please give
details of where you go and how frequently)
_________________________________________________________________
Are you able to drive or are you considering taking driving lessons? (Please give
details)
___________________________________________________________________
___________________________________________________________________
Do you or your parents have a Mobility car?
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About my family
People in my family
(This should include your mother father, brother sisters and grandparents. You can also
add in any step parents, brothers, sisters, half brothers and sisters)
Name
Relationship
Additional information
Information I wish to share about my family
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
____________________________________________________________
______________________________________________________
Pets
____________________________________________________________
____________________________________________________________
____________________________________________________________
_________________________________
Friendship groups
____________________________________________________________
____________________________________________________________
____________________________________________________________
_______________________________________
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List of people I would like to be involved in my
transition
Name of person you would like
to be involved in your transition
Relationship to you
Please give details stating
what level of involvement you
want them to have
Where are they
from (i.e. social
services)
Please give details stating
what involvement and what
level of involvement you want
them to have
Professionals
Name of specific professionals
who you would like to be
involved in your transition
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Homecare
(Table provided by medco)
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Medical Information
Name:
MRN:
NHS No:
DOB:
Diagnosis:
Age at diagnosis:
Biomarker
(GAGs/Chito/GB3 etc):
Mutation:
Enzyme:
Laboratory:
Therapy:
Age at therapy start:
Age at presentation:
Symptoms at presentation:
Antibody status:
Other current medication:
Have you ever experienced an infusion related reaction? If yes please describe
symptoms and nay course of treatment.
Major surgical events:
Age:
Event:
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Anaesthetic Assessment:
Airway grade/ Imaging
etc.:
Current medical problems:
Consultant:
Non LSD/Metabolic problems E.g. Hypothyroid, diabetes, hypertension, gallstones,
NASH etc.
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Disease specific complications or information
Complication
Date
Actions to limit
risk
Review date
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List of Doctors involved in my care
Paediatric Services
Specialist Field
Name of doctor What have
they seen
you for
Address
Contact
Number
Date
last
seen
GP
Metabolic
specialist
Cardiologist
Neurosurgeon
/neurologist
Rheumatologist
Spinal Surgeon
ENT
Orthopaedics
Anaesthetist
Geneticist
Pulmonologist/
Respiratory
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Psychiatrist
Nephrology
Ophthalmologist
Other
Other
Other
Other
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Adult Services
Specialist field
Name of
doctor
What have
they seen you
for
Address
Contact
number
Date of
appoint
ment
made
GP
Metabolic
Specialist
Cardiologist
Neurosurgeon/
neurologist
Rheumatologist
Other
Other
Other
Other
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DIETETIC INPUT
TO BE COMPLETED AT TRANSITION CLINIC BY DIETICAN
Do you have an emergency plan?(Insert copy of emergency management plan if
appropriate)
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
Latest weight: _____________________________________
History of any food allergies
______________________________________________________________________
______________________________________________________________________
________________________________
Feeding: Gastrostomy or NGT
______________________________________________________________________
______________________________________________________________________
__________________________________________________________________
Type of gastrostomy:
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
Tube size: ____________________________________________________________
Special feeds Delivery Company:
______________________________________________________________________
__________________________________________________
Additional information:
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
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PHARMACY
Medications at the time of transition:
Name and
strength of
medication
Form (i.e. Tablet,
liquid, powder,
inhaler)
Dose
How is the medication
received? (i.e. homecare
or pharmacy)
E.g. Betaine
500mg
tablets
1 tablet twice
a day
Delivered by healthcare at
home
If medication is delivered by homecare, how often is the delivery received and where
is the delivery sent?
___________________________________________________________________
___________________________________________________________________
Do you have any allergies to medications that you know about?
___________________________________________________________________
___________________________________________________________________
___________________________________________________________________
Details of drug interactions to be aware of:
___________________________________________________________________
___________________________________________________________________
_______________________________________________________________
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Transition Checklist
Below is a checklist of areas to be covered and discussed throughout your transition.
This document is to help ensure that all information has been shared with you prior
to transferring to your chosen adult centre.
List of points to be covered
Tick
Additional comments / things to
when
check further
complete
Transition addressed and
information shared with young
person and family.
Differences between paediatric
and adult services highlighted.
Medical information obtained
ready for transfer.
List of paediatric specialists
involved drawn up ready for
transfer letter.
List of adult specialists drawn up,
including where based.
Individual thoughts, aspirations
and feelings about transition
obtained and discussed.
Layout of transition appointments
discussed. i.e. where they will be
held, how they will be conducted,
what medical personnel will be
present, who if any the young
person would like to attend with
them.
Discussions had with the young
person over whether they would
like someone to accompany them
to the meeting and whether if yes,
they would be happy to be seen
for part of the meeting alone. (This
may change during the transition
period and should be addressed
at every meeting)
Issues of consent addressed and
how this may change. Should
include issues relating to
confidentiality.
Issues relating to communication
addressed. To whom letters are
addressed to and who should be
asked for if phoning for example.
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Access to support services/
patient groups and use of
advocate offered to young person.
Changes to homecare for those in
receipt of ERT in the home
discussed.
Transitions in other areas
discussed as well as any impact
these may have on health
transition.
Signpost young person to
supports from other areas looking
at; education, further education,
employment, independent living,
sexual health and family planning.
Transfer date to adult centre
confirmed.
A genetics discussion needs to
take place prior to transfer.
Site visit to adult centre arranged.
Meeting with adult team complete.
Information on adult service,
transport, reimbursements etc
given.
Information to be shared agreed.
All key medical personnel written
to and informed of transfer and
new contacts given.
Transition evaluation conducted at
first appointment after initial
transfer date.
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What do you know about your health?
(K) KNOWLEDGE
1.
Describes their metabolic disorder
2.
Understands implications on daily life
3.
Describes current plan of care
4.
Knows medication and side effects
5.
Has discussed special diet with dieticians
N/A
<12
12-14
14-16
6. Understands prognosis
7. Recognises signs and symptoms of
deterioration in condition
8. Knows who to contact for any questions/
worries in an emergency
9. Is aware of emergency regimen and keeps
a copy themselves
10 Aware of team members involved in care &
their roles
(S) SELF ADVOCACY
1. Asks own questions at appointments
2 Is able to respond to questions from the
team independently
3. Orders repeat prescriptions
4 Feels confident about seeing the
doctors/nurse/dietician independently
5. Able to make/ cancel/change appointments
6. Able to travel to appointments independently
7. Has the ability to do own blood spots
8. Understands the meaning of confidentiality
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(T) TRANSFER TO ADULT CARE
1. Understands meaning of transition
2. Transfer plan
3. Visit to adult service provided
4. Transition care plan completed
5. Family awareness of transition
(D) DAILY ACTIVITIES
1. Self-care abilities
2. Communication Skills
3. Mobility
4. Meal preparation
5. Disability Living Allowance and other benefits
entitlement
6. Discussed pre-payment certificate and how
to obtain
(V) VOCATIONAL
1. Disclosure to school
2. Disclosure to friends
3. Career plan
4. Employment
5. Hobbies
6. Knows someone who they are able to confide
in /talk to when feeling low
7. Aware of support groups for help, advice
(G) GENERAL HEALTH
1. Aware of effects of pregnancy on condition
and own health
2. Sexual health issues
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3. Access to sexual health services
4. Is able to care for own menstrual needs and
keep record
5. Knows which contraception is safe, in
conjunction with regular medication
6. Genetic counselling
7.Effects of smoking, alcohol, and drugs on
general health and condition
8. Puberty
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Medical Check list:
Procedure/task
Date
completed
Actions
Patient summary completed
Emergency regime updated
Local hospital informed
GP/ Paediatric team informed
Allied health care services
informed
Electronic medical record
activated
Emergency card supplied
Emergency contact procedures
explained
First appointment date at SRFT
supplied
Procedures and tasks for specific disorders only
Capacity and consent
determined (Capacity or IQ
information if available)
Adult learning disabilities team
notified
Palliative care and respite
Renal team informed
Neurology team informed
Hepatology team informed
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Lipid team informed
Endocrine team informed
Significant events recorded
Previous surgeries
MRI safety if devices inserted
Airways problems
Allergies or reactions
Additional information
-
BIMDG website is a rare metabolic disorder website with useful information,
the website is: http://www.bimdg.org.uk/
Acknowledgements:
-
MPS Society
LSD Collaborative Group
The Mark Holland Metabolic Unit, Salford Royal Hospital
The Willink Unit, Genetic Medicine. St.Mary’s Hospital.
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