This information explains a little about the transition process and what it will mean for you. Remember that if you have any questions about transition, please talk to your clinical nurse specialist or consultant.
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I have been commenced onto a transition program
Please tick as appropriate
[…] Introduction to transition
READY
[…] Preparing
STEADY
[…] Meeting the Adult Team
GO
My agreed goals are:
What is transition?
In health care, we use the word ‘transition’ to describe the process of planning, preparing and moving on from children’s health care to adult health care. Transition is a gradual process. It gives everyone time to talk about what health care you will need as an adult, choose which adult clinic is best for you and make sure you are ready to make the move.
What is the plan for our child’s transition?
When your child reaches 11 to 13 years of age we will start talking about transition and you will be given this leaflet.
We want to reassure you that we will work with you during this process and ensure that both you and your child are prepared as you possibly can be, by the time they are 18 years old and therefore ready for transition to adult services.
Depending on your child’s ability we will also provide appropriate information and plans that allow them to understand the process of transition.
Every child and family’s transition plan will be different. Your child and you will have different needs and require different professionals involved in their care than other families. We will aim for one professional to be identified as the lead coordinator of your child’s transition. If you already have a specialist nurse it is likely to be this person. That way you will always know who to contact in the first instance, if you have any queries or concerns about the transition. However, we encourage you to talk to every person involved in your child’s care about the transitions process.
We will use some documentation that will be adapted for your child’s needs to help us with the transition. This may include an action plan and a parent Ready, Steady, Go plan where you will be able to write any concerns and queries you may have about moving to the adult service.
Why do we need to move on?
As your child grows into a young adult, an adult environment will be the best place for them to get the care that is right for their needs. The staff in children’s services are expert in caring for babies, children and teenagers, and the staff in adult services are the experts in caring for young adults, adults and older people. For example, you may have questions about how your child’s condition might affect their adult life, career choices or relationships and the adult teams are best placed to help answer these questions.
When are we moving to adult services?
Typically, the first few years we will just be discussing the process of transition and start looking at what your child’s needs will be whilst identifying who might be the best people in the adult service to provide that care. We will then start to move things forward, talking to the adult teams and telling them about your child and your family. You will be fully involved in these discussions.
As we are getting ready to move into adult services, there will be a period of time when you meet the professionals, attend clinics and possibly visit adult wards. During this time your child will still be under the paediatric service for their care. We may then have a big multidisciplinary meeting with both the paediatric and adult professionals involved in your child’s care. We would like you to be at this meeting. After this meeting, provided everything is in place, we would transition your child’s care to the adult service. During the transition you will still have contact with your named transitions coordinator from paediatrics.
Can we choose which adult service we move to? Where will we be admitted?
We will have full discussions with you about your child’s needs and which service we feel, together, is best for them. Your child may be referred to several different specialties in the adult service depending on their needs. We will try and identify a main ward that your child would be admitted to if required, but this may not always be possible depending on why they need to be admitted and services available.
Who do we contact if my child is unwell?
During the transitions period we will have devised a document together that will give you all the contact names and numbers for the adult professionals, so you know who to contact.
At present access to acute hospital services would be through your GP or Accident and Emergency. If your child has complex physical needs, we may also develop an Admission Pathway for your child. This will detail exactly what to do and who to contact depending on what is wrong with your child on that occasion. With your permission, this admission plan is also held on a database by the Critical care Team, who will be informed if your child is admitted to hospital.
Can we meet the adult staff and areas before we leave children’s services?
We know that the thought of moving to a new clinic or ward and leaving the staff that you have got to know over the years can be very difficult. Before your transition is complete you and your child will have met all the professionals that will be taking over the care in adult services.
This may be in a clinic, meeting, home visit or ward visit. Some services offer a joint clinic with both the paediatric and adult teams. Your transitions coordinator will arrange for you to visit the adult areas that your child may visit. Depending on your child’s needs this could include out-patients, ward areas and accident and emergency.
Once you get used to the adult clinic and wards, you should settle into the new routine and get to know the staff there.
Can I attend the appointments with my child and if they are admitted to a ward can we stay with them?
Even when your child has reached the age of 18 years of age, we accept that they may not be in a position to make their own decisions, be safe on their own, or provide their own care.
If your child needs to be admitted to Hospital, then reasonable adjustments will be made to allow you to stay with them and help provide their care. You will also be able to attend outpatient appointments with them.
You can contact our Learning disability team, via the hospital switchboard on telephone: 01642 850850, Ext 53875 who will try to assist in making any reasonable adjustment.
Legal deputyship
In order to continue to be recognised as primary decision maker when your child reaches 18 years of age, parents and guardians may decide to apply to the court of protection for a “deputyship”. You can apply for a deputyship if it is shown that your child lacks the capacity to make decisions about their care. This can be a long process, sometimes as long as 2 years so we recommend visiting: www.gov.uk/become-deputy/overview for up-to-date information before your child is 18 years of age.
Will my child have a hospital passport?
When your child starts the transition process, we will discuss a Hospital Passport. This will usually be completed by your coordinator but may be completed by one of the Learning Disability Transition Facilitators depending on your child’s diagnosis.
The hospital passport is a summary of your child’s diagnosis, their daily needs, and capabilities such as how they communicate, whether they need help with feeding and how they can move. In addition to this there is a section about their likes and dislikes to assist in making any admissions to hospital as comfortable for them as possible.
With your permission, the hospital passport will be kept on your child’s hospital records, and a “flag” will be placed on the hospital system so that no matter where your child is admitted, they will know that your child has additional needs and a Hospital Passport.
Will my GP be involved?
We will inform your GP when we first start the transition process. You may already know your GP well, but it may also be that your child has been accessing support directly from paediatrics services. It is important that your child and you develop the relationship with your GP and that the GP knows your child’s needs well. From the age of 14 years of age all patients on the GP learning disability register are entitled to an annual health check.
This is the perfect opportunity to start building that relationship with your GP.
The multi-disciplinary team
It is likely that while your child has been in paediatrics you have had multiple professionals, from both the community and hospital, involved in their care. The majority of these services do have an adult equivalent and transition to these individual services will also take place. However, there are a few services in paediatrics that are not replicated in adults, but we will discuss that further with you if necessary.
These are some of the services that your child may have at present and details of what the transition may look like. However, it is important to highlight that what is available can vary depending on where you live so, please check with your child’s individual professional as to what is available to them in adult healthcare.
Physiotherapy
The children’s physiotherapist will continue to see young people in a special educational setting up to 19 years. The physiotherapist will liaise with adult physiotherapists in TEWV a few months before leaving school, to support a smooth transition. A meeting may be held with either or both parents and young person and the TEWV physiotherapist. If a final handover is needed this will be arranged prior to discharge.
Occupational therapy (OT)
The children’s OT will continue to see young people up to 19 years whilst attending a special educational setting. They will then refer your child on to the adult service within TEWV in the term prior to leaving school, if the young person has an identified need for OT.
Dietitian
The children’s dietitians will refer onto the adult services when they are 18 years old or leaving school. If possible, they will arrange a joint appointment with the new dietitian when handing over care.
If your child has a feeding tube and has equipment and feeds delivered, this will continue. If they are under the Children’s Community Nurse for gastrostomy care they will refer your child to the adult gastroenterology nurses.
Speech & Language
This will continue until 18 years (or 19 years if they are attending a special educational setting). There is an adult service for young people with stammering and voice problems, however there isn’t an adult service for developmental difficulties. Young people can be supported through college and FE, up to the age of 25 years, whilst they have an EHCP (but only if in education and only if there is an identified and treatable need)
Respite
If your child has been attending a respite facility, they will discuss with you what the options are for adult services. The Learning Disabilities Transitions facilitators can help with this process.
Day services
Up until now your child will have been attending school. If this is a special provision school they will stay there into their 19th year. After this time, you may want your child to access day services. Provision of day services depends on your child’s needs and your locality. Again, the Learning Disabilities Transitions facilitators can help with this process
After transition
We know that after transition it may be difficult to break contact with paediatric teams you have most likely been involved with for many years. It is important for your child’s continuing health that any questions or concerns are discussed with the adult team. While you can stay in touch with the paediatric teams, the new adult team should be the first point of contact in all matters related to your child’s health.
Contact us
For more information please contact the team on:
Telephone: 01642 850850, Extension: 57790
Monday to Friday only, not including bank holidays, however there is a voicemail facility.
Email: [email protected]
Patient experience
South Tees Hospitals NHS Foundation Trust would like your feedback. If you wish to share your experience about your care and treatment or on behalf of a patient, please contact The Patient Experience Department who will advise you on how best to do this.
This service is based at The James Cook University Hospital but also covers the Friarage Hospital in Northallerton, our community hospitals and community health services.
To ensure we meet your communication needs please inform the patient experience department of any special requirements, for example; braille or large print by emailing: [email protected]