This page explains about transition: getting ready to move on to adult kidney transplant services and what to expect when your child comes to Great Ormond Street Hospital (GOSH).
As your teenager is getting older, you will be thinking more about their future. You may have heard people talking about ‘transition’. In healthcare, we use the term ‘transition’ to describe the process of planning, preparing and moving from children’s healthcare services to adult healthcare services.
Transition is a gradual process of change, which gives everyone involved the time to ensure that young people and their families are prepared and feel ready to move to adult healthcare services. Ideally the transition process begins three or four years before the young person is transferred from GOSH to an adult hospital or service, which gives them time to practice the necessary skills.
When should transition happen?
The exact timing of transition to adult kidney transplant services varies from person to person, but the majority move directly to the adult service when they are aged between 16 and 18 years. Often young people will be experiencing other transitions at a similar time, such as moving from secondary school to sixth form college or starting work.
Who organises transition?
At GOSH, we want to make the transition as streamlined as possible for you and your son or daughter. Every teenage patient will have an allocated member of staff who is responsible for organising their transition. They will also be responsible for ensuring that both you and your teenager are supported throughout the process and receive all the preparation needed to feel ready to move to adult services.
The concept of transition will be introduced by the renal team in the routine transplant clinics or in the monthly adolescent focused kidney transplant clinic at GOSH, which is specifically directed towards young people and their families on the renal transplant programme.
In addition, we also hold joint clinics at GOSH with four main kidney transplant centres – Guy’s and St Thomas’ Hospital, the Royal Free Hospital and the Royal London Hospital all based in London and The Churchill Hospital in Oxford. The aim of these joint clinics is to give everyone the chance to get to know one another before the actual transition takes place.
In the renal team, it is usually the clinical nurse specialists who take the ‘transition coordinator’ role although other members of staff may be involved in the process. Remember, you and your teenager can discuss any queries or concerns with any member of the healthcare team.
Many young people will have a written ‘transition plan’, which outlines the timing of the key phases of the transition process. It also includes the expected date for the eventual transfer and details of any specific concerns, queries or requirements that you and your teenager have in relation to the move to adult services.
The adult service to which your son or daughter will move depends greatly on his or her kidney function at the time, but there may be a choice available. You and your teenager should both receive information about the adult service, how it is organised, how it differs from the service at GOSH as well as contact details for staff. It is important that you are both comfortable with the transition process and the new service.
The renal team will be able to arrange an informal visit to the adult service or arrange other ways for you and your teenager to meet the new team and start to get to know them. A visit to the new service can help all of you get used to travelling to the new hospital, finding the clinic where appointments are held and where tests and scans are carried out.
Preparing for transition
We know that approaching a move to adult care can be an emotional time in a young person’s life. As they get older, they will start to take more responsibility for their outpatient appointments, medicines and treatments, just as they take on more responsibility in other areas of life. As a parent, this can be a difficult time for you as well. It can take time for you to get used to handing over some of the responsibility.
Young people in adult services are generally seen as being independent. The transition process involves ensuring that your teenager has all the skills necessary to feel comfortable in the adult health care service. In children’s services, parents are given the responsibility for managing their child's health care, communicating with health care professionals and making important decisions. This is different to adult services, where the responsibility is usually given to the patient rather than the family. However, you will still be able to give your teenager advice and be there to provide support.
Talking about transition
At GOSH, we value the role that families have in the health of children and young people. We feel that parents have a great deal of valuable experience to offer young people who are in the transition process. Families will often be able to give young people tips on how to organise appointments, take responsibility for their medicines and treatments, and which questions to ask during admission, ward rounds and clinics. Families can also support young people in gradually developing independence and becoming more involved in their health care.
There might be some aspects of growing up with a medical condition or disability that have not been discussed with you and your teenager. For example, you may have questions about how your teenager’s condition might affect his or her adult life, in relation to things like career choices, benefits, relationships or family planning. It is a good idea for you to discuss these things with your GOSH team, who will be able to advise you or put you in contact with appropriate organisations that can help. Support groups and charities can sometimes offer valuable support to young people and their families who are going through the transition process. It may also be useful to speak with other families of teenagers who are getting ready for adult services.
Some topics you might want to think about and discuss with your teenager include:
- What does transition mean to you as a family?
- What does transition mean to your son or daughter?
- Do you, as parents, feel that your son or daughter would be able to explain their medical background and current needs on their own?
- What does your son or daughter understand about the daily care needed and how are they
- Does your son or daughter know what to do or who to contact if unwell?
- Does your son or daughter take their medicines independently or with supervision and support?
- How can we help them become more independent with their medicines?
- Does your son or daughter know who to contact at their family doctor (GP) surgery?
- Who takes responsibility for organising repeat prescriptions for medicines or orders for equipment if needed?
- Who organises follow up appointments?
- Does your son or daughter feel able to attend appointments independently? If not, how can we help?
- Does your son or daughter have good awareness of lifestyle issues, such as alcohol, sun safety, contraception, exercise or other concerns particular to them?
- Does your teenager have a good social support network?
- How do you think you will cope as a family with transition? What support can we offer to make this period of adjustment easier?
- Do we need to address any additional concerns, such as emotional or behavioural needs, non-adherence to treatments, dietary queries, developmental or education needs, for instance?
Remember – you can discuss any or all of the above issues with the team at GOSH – we will do our best to help you and your teenager move towards independence.
The most difficult aspect for some families is to break contact with the children’s service once transition has happened. It is important for your teenager’s continuing health that any questions or concerns are discussed with the adult team. While you can stay in touch with the team at GOSH, the new team should be the first point of contact in all matters related to your teenager’s health.
Last reviewed by Great Ormond Street Hospital: June 2011
Ref: 2011F1025 © GOSH Trust June 2011
Compiled by the Renal and Adolescent Medicine teams in collaboration with the Child and Family Information Group.
This information does not constitute health or medical advice and will not necessarily reflect treatment at other hospitals. If you have any questions, please ask your doctor. No liability can be taken as a result of using this information.