Parent Information – Transition to Adult Diabetes Service: What’s it all about?

Introduction
As a parent/carer of a young person under the care of the Paediatric Diabetes Service, your child will eventually be transferred (i.e. move) to the Adult Diabetes Service. The process that supports this transfer is called transition. This information leaflet explains about the transition process and what you can expect.

What is transition?
As your child gets older they will ask for more freedom and independence, and with this the management of their diabetes will naturally become more their responsibility. This can be both an exciting and daunting time for all. Transition is the process whereby you, as parents/carers, and the diabetes team help your child to develop independence and gradually take on responsibility for their own diabetes care and general health. This involves teaching your child to develop their skills in communication, decision making and assertiveness. It is hoped that this will help to improve their sense of control and independence in regards to their diabetes management so that they can make the best informed choices about their health.

When will the move to adult services happen?
There is no exact time or age that is right to move to adult services, but the majority of young people move between 16 and 19 years of age.

The purpose of this information leaflet, as well as the initial discussions the diabetes team will start to have with you and your child, is to get you thinking about the move and preparing them for adulthood and care under adult services.

The preparation for the move to adult services will be gradual and aims to help your child to develop their confidence to independently manage their diabetes. There will be plenty of time and support to make sure that you all feel ready for this change. And of course, support will continue in the adult service too.

What are some of the challenges of the transition process?
Every family is individual. We appreciate that moving to adult services can be a daunting time for some, and it can take time to adjust. Some young people and parents/carers will have worries about the move to adult services whilst others may feel they are ready. Everyone is different!

We recognise that as a parent/carer you have played a big part in looking after your child’s diabetes and will continue to do so for some time yet. You are their main source of support and have lots of experience and knowledge to offer. So it may help to start to talk together about how you can help your child to gradually take more responsibility for their diabetes and its treatment.

Although your child is the central person in the transition process, we know that they are not the only person that can be affected by the changes to come. As a parent/carer it is understandable if you:

• Find it hard to adjust to how your role and involvement is changing;
• Feel excluded or out of the loop as your child takes on more responsibility;
• Worry about whether your child is ready to transfer to an adult service;
• Feel apprehensive about your child’s new medical team.

You may find it helpful to talk about how you feel and any worries or questions you may have, as well as ask your child about their own concerns so you can understand each other’s point of view.

The diabetes team is here to help all of you with any concerns or questions you may have. We aim to provide you with all the relevant information about the adult service, including contact details, how the service is structured and some of the common differences between paediatric and adult services.

What might help?
To help with the transition process your child may need your support to explore the following questions:

• What are my strengths, what can I do well?
• What gaps are there in my knowledge and skills?
• What do I need to do to address these gaps?
• What supports do I have and where can I find the right support?
• Who can I talk to or where can I go to find out more information?
• What do I expect out of my child’s transition process?

From now on the diabetes team will ask your child to complete (with your support) a transition questionnaire at clinic appointments to support them to explore their knowledge and skills. This will also help their diabetes team to learn what advice and support they need to offer you and your child in order to help you all better. The first questionnaire your child will be asked to complete is called ‘Set Up!’

What can I do to make the transition process easier?
It may help if you:

• Are informed of what to expect when your child is transferred to the adult service – talk to the diabetes team and ask them any questions you may have about transition and the move to adult services. Remember, there are no silly questions!
• Support your child in a gradual way to develop their self-management skills. This typically includes learning about their medicines – why, when and how they take them (including dosages), as well as carbohydrate counting. The diabetes team will support you with this.
• Educate your child about the support and resources available to them, including who they need to contact in an emergency. They may find it useful to keep important phone numbers saved in their phone as well as appointment dates on a calendar(s).
• Encourage and support your child to ask and answer questions during their appointments with any member of the diabetes team. Some young people even find it helpful to see a member of the team without parents/carers for part of the appointment – but only when they are ready to do so.

All of this and more will be covered in the transition questionnaires your child will be asked to complete at each clinic appointment.

More information
If you have any questions or concerns about transition, please talk to your Paediatric Diabetes Nurse Specialist, Clinical Psychologist and/or any member of the paediatric diabetes team.

References:
Adapted from: The Royal Children’s Hospital Melbourne (2012). Adolescent Transition Education Package.

NHS Scotland: Psychosocial interventions for improving adherence, self-management & adjustment to physical health conditions. Children and young people.

GOSH NHS Trust (2011). Transition: getting ready to move on to adult health services.

If your symptoms or condition worsens, or if you are concerned about anything, please call your GP, 111, or 999.

Patient Experience
We know that being admitted to hospital can be a difficult and unsettling time for you and your loved ones. If you have any questions or concerns, please do speak with a member of staff on the ward or in the relevant department who will do their best to answer your questions and reassure you. 

Feedback
Feedback is really important and useful to us – it can tell us where we are working well and where improvements can be made. There are lots of ways you can share your experience with us including completing our Friends and Family Test – cards are available and can be posted on all wards, departments and clinics at our hospitals. We value your comments and feedback and thank you for taking the time to share this with us.

Patient Advice and Liaison Service (PALS)
If you have any concerns or questions about your care, we advise you to talk with the nurse in charge or the department manager in the first instance as they are best placed to answer any questions or resolve concerns quickly. If the relevant member of staff is unable to help resolve your concern, you can contact the PALS Team. We offer informal help, advice or support about any aspect of hospital services & experiences.

Our PALS team will liaise with the various departments in our hospitals on your behalf, if you feel unable to do so, to resolve your problems and where appropriate refer to outside help.

If you are still unhappy you can contact the Complaints Department, who can investigate your concerns. You can make a complaint orally, electronically or in writing and we can advise and guide you through the complaints procedure.

How to contact PALS:
Telephone Patient Services: 0300 123 1732 or via email at: wah-tr.PALS@nhs.net

Opening times:
The PALS telephone lines are open Monday to Friday from 8.30am to 4.00pm. Please be aware that you may need to leave a voicemail message, but we aim to return your call within one working day.

If you are unable to understand this leaflet, please communicate with a member of staff.

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