This is the planned movement of care from the ventilation centre your care has been with through childhood to an adult ventilation service. These processes often start in your early teens and continue until you are an adult. This will form one part of the whole transition of care if you are under other teams they will also move to adult services.
Why do I need to move from children’s to adult services?
As you become a young adult, adult care provides the best all round care for your needs. As you grow and develop your anatomy and physiology changes and you need to be managed by experts in this new adult anatomy body. It is also more appropriate for your care needs to be looked after in an adult setting with other adults, for example an adult hospital. The clinicians there will be experienced in managing adult problems and facilitating you goals and independence. All the medical equipment and environment will be right for adults.
Process of transition
The age this process starts and finishes may differ depending on where you live and your care provider. Ideally the pathway should be a joined up process involving both your children’s team and your new named adult team.
The process should include one or more joint appointments with both your children’s team and your new adult team. Ideally one of these appointments should be based at your new adult centre so you are familiar with your new adult ventilation team location. This should be an opportunity for you to understand the change of care provided and ask questions about this. Part of the transition process should allow you time to visit the adult ventilation centre and the hospital and ward where you may be admitted if you were unwell to ensure you are familiar with where this is and the new teams.
There should be an overall transition care pathway for you involving all the specialities that you are having care from for all your conditions. There may be a key worker or clinician involved in coordinating all of your care transition. Where possible the key clinicians involved in your care will be at the transition appointments. You can tell your Children’s team if there is anyone else you would like at these appointments, for example community nurse or teacher. Ideally your GP should be involved in this process, invited to the meetings and included in all correspondence.
The process of transition should be person centred and can be adapted to each person based on age, maturity, cognitive ability, psychological status, communication needs and personal circumstances. The transition appointment will involve re-telling your medical story so that the adult team fully understand your experience. They will also discuss any plans you may have made regarding any of your future wishes for care. Sometimes this can feel scary but it is really important that your wishes are heard for example if you are planning on further education in a different city how your care may continue to be provided to more difficult decisions surrounding the different type of critical care you would want if you became very unwell.
It is important that the focus of the transition process is what is important to you the young person and their families/guardian/carers. It is important that your current goals and longer term goals are included as part of your transition.
Your clinical care will stay with your children’s team until a known date of transfer of care when your care will be fully and only met by the adult ventilation team.
Often some investigations and tests may be repeated during the process of transition to ensure the adult services have a recent record of your information. This may include lung function (blow tests), overnight pulse oximetry (finger oxygen testing), carbon dioxide measure (the waste gas that you are breathing out), height, weight and cough assessment.
There will be a review of current ventilator prescription and kit to check that it is still meeting your needs. Ideally the adult service will try to keep using the same settings, machine and mask. However, sometimes there may need to be a change of machine/mask. This is often due to safety issues ensuring that everyone is trained and familiar with a device and that replacements can be quickly given if a machine was broken.
It is important that all equipment that you have is documented to ensure this can be replaced by adult services, for example, cough assist, nebulizers, suction devices and oxygen monitors because these may be managed by different teams.
How might transition feel different?
The same excellent level of care is provided at adult services. However this can feel an unsettling time as often your paediatric ventilation care may have been provided for some time by the same team in a familiar location. It can feel challenging as it may also be a time of change in education provision and home care provision.
The care emphasis moves away from parents/guardians making decisions for you and for you to be involved in your own decisions regarding your ventilation treatment as a young adult. The home ventilation letters will be addressed to you and you may be asked questions about your health and future care. Of course you can still involve your parents and partners in your care as much as you wish to.
We have provided some questions which you might like to ask your clinical team.
- Do attend your transition appointments at it is a really important to ensure your care continues safely and that the adult team gets to know you really well.
- Write a list of your main concerns/questions to take with you and ask at the transition appointment.
- Ensure you have the names/contacts of your adult ventilation team.
- Ensure you understand when the follow up appointments are and how often this will be.
- Ensure you know where to go for your adult appointments.
- Ensure you know the exact date that care is fully transferred to adult services.
- Ensure you know who is providing all the devices, servicing and consumables, for example, mask and hose.
- Ensure you know where you will be cared for if you became unwell, for example the adult hospital and ask to visit. Often a concern can be will my parents/care team be able to stay and look after me during the time I am in hospital. This is usually fine but chatting with the ward managers during the transition process can address this concern.
- Ensure you know where all aspects of care have transitioned to as this may not be at the same time as ventilation transition or to the same care provider/hospital.
- Ensure to ask if your emergency care plan- what to do if you become unwell is updated with the adult teams. Ensure you have a folder with your recent letters, ventilator settings and care plans to take to the hospital with you. Always take your ventilator to the hospital with you.