Transitioning to adult care from paediatric complex chest service

Transitioning from paediatric to adult care

Don’t worry, changing to adult care means you can receive more appropriate services now your young person is moving into adolescence. The process of transition should start between 15 and 16 years old. We would aim to invite you to a transition clinic which is often the first of a series of discussions about making plans for the future and an opportunity to meet with the adult respiratory consultant who will be taking over your child’s respiratory care.

Do we have to transition and why?

All children have to start transition when they are between 16 and 18 years old. At this age they are no longer regarded as a child, and a children’s clinic is no longer a suitable environment for them to be seen in. As your child gets older, their medical requirements will change and cannot be catered for in a children’s clinic. It also gives an opportunity for them to be seen within an age-appropriate environment with more age appropriate faculties with staff who are more equipped to deal with their needs.

Where will we transition to, and do we have a choice?

Yes, the choice is up to you; it depends on where you live. Usually people are referred to the adult respiratory clinic within Addenbrooke’s if appropriate or within your local hospital if this is agreed to be more suitable.

How does transitioning happen?

We will start to talk about transitioning your child as soon as they reach 15 years of age. They will be booked into a transition clinic for one or two visits each year up to the point at which they are actually transferred to adult care. At these transition clinic appointments, you will have an opportunity to meet the adult team and get to know them. We will let you know when your last appointment with us will be. We will send your transition paperwork to the relevant team and once you have an appointment with them there will be no need to attend any further appointments with us.

What happens if my child is admitted to an adult ward: can we or their carers stay?

It is recognised that usually adult wards do not have facilities to allow people to stay but exceptions are often made for young people with additional care needs to accommodate a parent or carer.

Other things to consider

Who will be my primary contact in adult services?

It will be increasing important that your GP is involved as they are experts in local services and referral pathways. They play a key role in linking with other adult services and provide valuable support.

Adult hospice care

Adult hospices can feel very different to children’s hospices because there are a larger number of people accessing them and many of their service users will be older people who are at the end of life. However, many adult hospices are beginning to adapt services for young people and to think about other forms of support for young people. Your GP or existing children’s hospice may be able to advise.

PIP

The Personal Independence Payment (PIP) replaces DLA at 16 years; it is designed to help meet some of the extra costs you may have because of your young person’s long term health condition or disability. For more information visit the GOV.uk PIP webpage (opens in a new tab).

End-of-life care plan / respect forms

These are sometimes called advanced care plans and can be completed with the support of the hospice staff. If you haven’t already done so, it is useful to consider and talk through some difficult decisions and choices about an end-of-life plan. Please visit the Child and Young Person's Advance Care Plan Collaborative website (opens in a new tab).

Deputyship

As your child reaches 18 years old it is good to be aware that you may no longer be able to make decisions about your young person’s health care, have access to results and confidential medical information. This is because your child will be deemed an adult, and parental responsibly ceases at 18 years old. Therefore, we recommend that you consider Deputyship, as a way of being able to stay involved in the decision-making process into adulthood. This can be applied for through the courts - see the GOV.uk website (opens in a new tab) for more information.

Contacts / further information

• Together for short lives (opens in a new tab)