The concept of moving on or transitioning from the familiar and trusted environment of the paediatric service at Childrens Health Ireland at Crumlin to the adult service at St. James’s Hospital, can bring about mixed feelings for families. There may be feelings of anxiety around meeting a new team of health professionals, the logistics of finding your way around a different hospital and even finding a parking space! For others, there may be a sense of excitement and anticipation, in other words, a fresh start.
This process will become geographically easier from 2023 when the new Children’s hospital Ireland opens on the St. James’s campus thereby bringing together comprehensive care for all ages on one campus.
What is Transition?
Transition is the process of planning, preparing and moving from children’s health services to adult health services. In the case of most people with bleeding disorders living in Ireland, this involves a transfer of care from the paediatric team at CHI at Crumlin to the National Coagulation Centre (NCC) at St James’s Hospital.
The transition process actually starts at the time of diagnosis and continues throughout childhood as children become more independent and begin to take ownership of the management of their bleeding disorder. Examples of this ongoing process can include; starting pre-school, encouraging a 10-year-old to self-infuse and encouraging a 15-year-old to have a discussion with their doctor on their own for part of a clinic visit.
While transition is an ongoing process that begins in early childhood, many of the big steps occur during the teenage years. Most young people move over to the NCC between the ages of 16 and 18 years. The health care professionals involved in the transition process are aware that this is often a period of significant change, whereby physical development and growth can be accompanied by many new emotional and social challenges.
The transition process may progress differently for each individual and family, for example, it may take into account if a young person is undertaking state exams or siblings close in age who would like to transition together. While there are guidelines in place, the transition process can be flexible and tailored to meet the individual patient’s needs.
What to expect at the Transition Clinic?
The Transition Clinic is a designated outpatient clinic for young people at the National Coagulation Centre (NCC). Prior to the first Transition Clinic appointment at St James’s Hospital, the team at CHI at Crumlin will have forwarded a transfer summary to the team at the NCC. This is useful for two reasons, it helps to plan clinics and it also gives us an idea of what health care professionals the young person may need to see on their first visit.
Initially, the young person will meet a doctor, a nurse and a social worker. Depending on their needs and concerns they may meet other members of the team such as the dentist, physiotherapist or psychologist. At the first visit to a Transition Clinic, the young person will be given a tour of the centre and introduced to team members.
An important part of the process is meeting and getting to know the team who will support the young person in the adult service. Meeting new health care professionals and building a relationship of trust will take some time. Transition can be daunting and it is important to remember that the health professionals in both hospitals are there to support and guide young people and their parents throughout the process. This is a team effort that includes the young person, parents and healthcare providers.
Health care professionals at the NCC focus on adult health needs and medical issues, the team works directly with the young person. From the first Transition Clinic appointment, the young person will continue to be supported to take responsibility for their own health needs. While the young person will have the option of attending their appointment on their own or with a family member, they will be encouraged to speak on their own behalf and to meet with health care professionals on their own.
The young person will also be provided with relevant patient booklets along with the contact details of the NCC and that of the out of hours service. Return appointments are made at the desk before leaving. All patients receive a reminder of their appointment by text message if a mobile number has been provided. Normally the young person attends two Transition Clinics before attending regular adult clinics.
The transition to adulthood and adult services involves major changes for all involved. However, it is important to remember that moving on to an adult treatment centre, is one of the final steps towards independence and empowering young people in the management of their own bleeding disorder. It is a crucial step as they embark on their exciting journey into adulthood.