Moving from pediatric to adult care

Transition is a process, not a single day

Transition does not happen in one appointment. It is preparation that spreads over years. During this time, the young person learns to manage their own health. The children’s team and the adult team also share information. According to English health guidelines, the children’s team should not let the young person go before adult care is ready. The moment of handover should be chosen when the young person is doing well, not by a strict age.

Source: NHS – Moving from children's social care to adults' social care · NICE NG43 – Transition from children's to adults' services, öneri 1.2.3

When should it start?

International guidelines recommend starting preparation early. The English guideline (NICE) recommends that planning start at age 13–14 at the latest. The Got Transition program in the US also places the first steps at ages 12–14. The actual handover is usually between ages 18–21. A study with young people with rheumatic diseases in Türkiye also supports starting education at age 14.

Source: NICE NG43, öneri 1.2.1 · Got Transition – Six Core Elements · Sağlam Atmaca M ve ark. Clin Rheumatol 2026 (PubMed 42773401)

The situation in Türkiye: the plan often starts with you

In Türkiye, there is not yet a shared clinical pathway describing how transition should be done. A national survey on Duchenne muscular dystrophy was carried out in 2025. Only about one in five doctors had a regular transition program. Most young people who had transitioned first heard about it at age 17 or later. Young people with organ transplants have also described a lack of information and guidance. So you may want to raise the subject with your doctor early.

Source: Akinci G ve ark. Orphanet J Rare Dis 2026;21:318 (PubMed 42332730) · Tasdemir Hİ, Paskaleva T. Exp Clin Transplant 2026 (PubMed 42538705)

A written plan and a yearly review

The transition plan sets out the young person’s needs, goals and steps. The NICE guideline recommends reviewing the plan at least once a year. The young person, the family and the health professionals caring for the young person take part in this meeting. The plan covers not only medical issues but also school, work and social life. Got Transition also recommends adding a medical summary to the plan.

Source: NICE NG43, öneri 1.2.4 ve 1.2.8 · Got Transition – Six Core Elements

One named person who pulls things together

With a rare disease, a young person may have many doctors. The NICE guideline recommends choosing one named person to coordinate the transition. This person may be a nurse, a doctor or another health professional. The young person should have built a good relationship with this person. According to the guideline, this support should continue for at least 6 months before and 6 months after the handover. You can ask your team whether your hospital has such a role.

Source: NICE NG43, öneri 1.2.5–1.2.9

Meeting the adult team beforehand

Transition is easier if the young person meets someone from the adult team before the handover. This could be a joint appointment or a visit to the adult clinic. The NICE guideline recommends that the same doctor be seen at the first two appointments after the handover. If the young person does not attend an appointment, it is also recommended that the team contact the family and the young person.

Source: NICE NG43, öneri 1.3.1, 1.3.5, 1.4.1 ve 1.4.4

Finding an adult doctor for a rare disease

There may be few adult doctors who know rare diseases that start in childhood. Most European Reference Networks (ERNs) have set up transition working groups for this problem. These groups have written recommendations, but practice is not the same in every country. In Türkiye, too, specialists have recommended planned transition for some diseases. You can ask your child’s doctor for their view when choosing an adult doctor. For expert centers and ERNs, see the “Newly diagnosed: first steps” guide.

Source: EURORDIS – Transition in Healthcare: Turning recommendations into practice (2026) · Mungan NO ve ark. Healthcare (Basel) 2026 – MPS II Türkiye Delphi uzlaşısı (PubMed 42121657)

Small steps by age

Got Transition breaks skill-building into steps by age. These steps are a roadmap, not a strict rule. Every young person moves at their own pace.

1. Ages 12–13: Learns about their condition, medicines and allergies. Asks the doctor their own questions.
2. Ages 14–15: Learns what to do in an emergency. Tries booking appointments and getting prescriptions renewed.
3. Ages 16–17: Books their own appointments and gets their own prescriptions renewed. Prepares a medical summary with the doctor.
4. Age 18 and over: Books the first appointment with the new adult doctor. Carries their summary with them.

Source: Got Transition – Health Care Transition Timeline for Youth and Young Adults

Seeing the doctor alone for part of the visit

Got Transition recommends that, from ages 14–15, part of the appointment be held with the young person alone. NICE also recommends giving the young person the chance to ask questions separately from the family. This does not mean shutting the family out. The young person learns to describe their concerns in their own words. It is good to discuss together with the young person how the family will be involved.

Source: Got Transition – Health Care Transition Timeline for Youth and Young Adults · NICE NG43, öneri 1.2.19–1.2.21

Medical summary and personal file

A short medical summary helps a new doctor quickly understand the young person’s history. The summary may include the diagnosis, medicines, allergies and an emergency plan. NICE recommends a file in which the young person also writes down their own preferences. This file can be ready about 3 months before the handover. Patients have the right to examine their health records and obtain a copy.

Source: NICE NG43, öneri 1.3.3 · Got Transition – Health Care Transition Timeline for Youth and Young Adults · Hasta Hakları Yönetmeliği, md. 16 (mevzuat.gov.tr)

Am I ready? Short questionnaires

There are questionnaires to see what the young person knows and what they still need to learn. Got Transition has separate readiness questionnaires for young people and families. The young person and the family can compare their answers and discuss them with the doctor. The Turkish version of a widely used readiness questionnaire has been tested in young people with diabetes and found to be reliable. Your doctor can tell you whether they use this kind of questionnaire.

Source: Got Transition – Youth and Young Adults · Kızıler E ve ark. Balkan Med J 2018;35:93-100 (PubMed 29039345)

Rights that come at 18: consent and privacy

Under the Türk Medeni Kanunu (Turkish Civil Code), legal adulthood begins on completing age 18. Under the Hasta Hakları Yönetmeliği (Patient Rights Regulation), a medical intervention requires the patient’s consent. If the patient is a minor or under legal restriction, permission is obtained from the parent or guardian. Patients also have the right to ask for their privacy to be respected. Even so, a young patient should be informed as far as they can understand and should take part in decisions.

Source: Türk Medeni Kanunu (4721), md. 11 (mevzuat.gov.tr) · Hasta Hakları Yönetmeliği, md. 21 ve md. 24 (mevzuat.gov.tr)

From ÇÖZGER to the adult report: do not miss the dates

ÇÖZGER (Special Needs Report for Children) becomes invalid when the young person turns 18. When there are less than three months to go before age 18, an adult report can be requested. The adult regulation allows some extra time. If the application is made within three months after turning 18, the new report is considered valid from the 18th birthday. Reports are described in detail in the “Rights and support” guide.

Source: Çocuklar İçin Özel Gereksinim Değerlendirmesi Hakkında Yönetmelik, md. 11/6 (mevzuat.gov.tr) · Erişkinler İçin Engellilik Değerlendirmesi Hakkında Yönetmelik, md. 11/6 (mevzuat.gov.tr)

Guardianship and legal restriction: general information

Some young people may still need help with decisions after age 18. In this situation, the law allows the person to be placed under legal restriction (kısıtlılık) and a guardian (vasi) to be appointed. This decision is made by the civil court of peace (sulh hukuk mahkemesi). For restriction due to mental illness or mental disability, an official medical board report is required. The decision may be made before age 18 but takes effect after age 18. A young person under restriction, as a rule, remains under the parental custody of their mother and father.

Source: Türk Medeni Kanunu (4721), md. 335, 397, 405, 409 ve 419 (mevzuat.gov.tr)

Restriction is not the only route

The law also recognizes routes other than restriction. A person can also ask to be placed under restriction voluntarily. The court can also appoint a legal adviser for certain important matters only. If the reason no longer applies, the guardianship can be asked to be lifted. You can discuss the right route for you with a lawyer or with the civil court of peace.

Source: Türk Medeni Kanunu (4721), md. 408, 429, 472 ve 474 (mevzuat.gov.tr) · Got Transition – Turning 18: What it Means for Your Health

Sexual and reproductive health

Sexual health, relationships and protection are important topics for every young person. A young person with a chronic condition should also be able to ask questions about them. Some questions may be ones they do not want to ask in front of the family. This is why seeing the doctor alone is useful. Patients have the right to ask for their health information to be kept confidential.

Source: MedlinePlus – Teen Sexual Health · Hasta Hakları Yönetmeliği, md. 21 (mevzuat.gov.tr)

Pregnancy planning, medicines and genetic counseling

A young person who takes medicines regularly and is thinking about pregnancy is advised to talk to their doctor first. Stopping a medicine on one’s own can sometimes be more harmful than continuing it. If there is a genetic condition in the family, genetic counseling is an option. The counselor explains the chance of the condition passing to a child. Details are in the “Planning a pregnancy” guide.

Source: CDC – Medicine and Pregnancy: An Overview · MedlinePlus Genetics – Why might someone have a genetic consultation?

Mental health: you are not alone

People living with a rare disease and their families took part in a large survey in Europe in 2025. About 7 in every 10 people said their mental health was poor. Of those who took part, 73 percent had needed professional support. But only 49 percent had received support. Deep sadness, hopelessness, intense anxiety or anger are important signs. If this happens, you can talk to your doctor or the school counselor. Mental health problems can be treated.

Source: EURORDIS Rare Barometer – Improve our mental health! (Haziran 2026) · MedlinePlus – Teen Mental Health

In an emergency

If the young person is at risk of harming themselves or there is a life-threatening danger, do not wait. You can call the 112 Emergency Call Center. It is recommended that mental health support also be written into the transition plan.

Source: 112 Acil Çağrı Merkezi (İçişleri Bakanlığı) · NICE NG43, öneri 1.2.8

Support at university

Under the law, no one with a disability can be prevented from receiving education for any reason. Every university has a unit for students with disabilities. This unit helps with things such as learning materials and suitable student housing. It also helps solve problems that arise at school. You can talk to this unit before enrolling.

Source: 5378 sayılı Engelliler Hakkında Kanun, md. 15 (mevzuat.gov.tr)

Registering with İŞKUR as a person with a disability

Anyone who has turned 14 can register with İŞKUR (Turkish Employment Agency). A person with a whole-body loss of function of at least 40 percent can register as “disabled”. This requires a valid medical board report. A person who registers online must take their report to İŞKUR to have it approved. People whose report states “cannot work in any job” are not given disability registration. With a time-limited report, the registration returns to standard when the period ends.

Source: İŞKUR – İş Arayan Kayıt

Job coaching and programs

İŞKUR offers job coaching for people with disabilities in 81 provinces. The job coach helps with job searching, interviews and choosing a profession. They also refer people to suitable courses and programs. There is also a workforce adaptation program for unemployed people with disabilities who have turned 18. Other conditions also apply for taking part.

Source: İŞKUR – Engelli İş Koçluğu · İŞKUR – Engelsiz İşgücü Uyum Programı

Rights at work: quota and ban on discrimination

Under the İş Kanunu (Labor Law), employers with 50 or more workers must employ workers with disabilities. This rate is 3 percent in the private sector and 4 percent in the public sector. The employer finds these workers through İŞKUR. The Engelliler Hakkında Kanun (Law on Persons with Disabilities) prohibits discrimination based on disability in hiring and in the workplace. The employer is also required to make reasonable accommodations.

Source: 4857 sayılı İş Kanunu, md. 30 (mevzuat.gov.tr) · 5378 sayılı Engelliler Hakkında Kanun, md. 14 (mevzuat.gov.tr) · İŞKUR – Engelli İstihdamı