10 steps to transition

The 10 Steps Transition Pathway is designed to make the transition to adult services as simple and as clear as possible. It describes the 10 important steps for young people, their parents, and professionals as a young person moves from children to adult services. There are lots of resources for young people, their parents, and professionals to help make transition to adult services smooth, supported and empowered.

Professionals usually start talking to young people and their parents about their health needs and Transition to Adult Services around the time of their 14^th birthday. This allows plenty of time for a gradual planned Transition.

Professionals should write a letter summarising the young person’s diagnosis and health needs or this information can be entered into a Health Information Passport or Advance Care Plan. The young person should be given a copy of this information and have the opportunity to read it and ask questions. This information should be updated as they progress through Transition.

Standards

All young people with long-term conditions and their families are aware of the need for Transition to Adult Services before their 15th birthday.

Consultants caring for young people with long-term conditions identify markers for complex or difficult transition before the young person’s 15th birthday and notify the Transition Team if appropriate
Individual Specialties, the Trust Transition Team, Adult Services, Commissioners from both Adult and Children’s Services, and Patient Representatives meet at least annually to plan services for the cohort of young people with long-term conditions as they move into adult services.

Education, empowerment, and development of self-management skills for long-term conditions, begin in childhood and are life-long.

Professionals should work with young people, depending on their age and ability, to help them develop the knowledge and skills they need to keep healthy and well. This should include the opportunity to talk about how their health needs may impact on their future including employment, independent living, sexuality, and relationships.

The young person should also have the opportunity to be seen without their parents for part of their clinic appointment.

Standards

All young people have access to a developmentally appropriate generic health education and empowerment programme developed and delivered in partnership with their local education provider, commenced before their 15th birthday.

All young people with long-term conditions have access to developmentally appropriate information and advice regarding their condition and its management, before their 15th birthday.

All young people with long-term conditions have the option to receive copy letters, together with opportunities for explanation and discussion of the letter and its contents.

All young people have the opportunity to be seen without their parents for part of their consultation.

Professionals should work in partnership with young people and their parents to create a personal Transition Plan. This should be tailored to their health needs and coordinated with other aspects of Transition as necessary. They should be given a copy of their Transition Plan, and have the opportunity to read it and ask questions. The Transition Plan should be reviewed at each appointment.

A number of different transition plan formats are in use at Alder Hey. These include the generic Ready Steady Go and some condition-specific transition plans. These can be accessed via the Trust Transition team or via the website.

Standards

All young people have access to a handheld, personalised Transition Plan, which commenced before their 15^th birthday.

The Circle of Support is the group of people: professionals, friends and family, who are there to help the young person. Professionals should list the multidisciplinary team of professionals in the young person’s Circle of Support and identify someone to take over when the young person transitions to Adult Services.

Professionals should identify a Transition Keyworker, and if three or more specialties are involved, a Lead Consultant, to support the young person and co-ordinate their transition.

The GP is often the only source of continuity between children’s and adult healthcare providers and has a significant role in the ongoing management of many long-term conditions.

Standards

All young people with long-term conditions who are supported by three or more specialist medical services have a clearly identified lead consultant identified before their 15^th birthday.
Young people of transition age (14 to 25 years) with long-term conditions have access to a named professional, working in a key-working capacity, to support them through transition.
The young person’s GP is actively involved in the young person’s transition including routine prescriptions, reviews for minor illnesses, and planning the young person’s route into urgent care: at the latest from their 15^th birthday.

Professionals should ask for the young person’s permission to refer them to the professionals who will be taking over their care in the adult sector.

Professionals in the adult sector should provide information about the services they provide for the young person and their families.

Standards

Each young person with a long-term condition is referred to adult services at the latest before their 16^th birthday.
The lead consultant liaises with other involved consultants to plan referral to adult services where a young person is supported by three or more specialist medical services.
A detailed summary of the young person’s medical records is available for each specialist medical service in the adult sector.

Joint reviews may take place in specific Transition Clinics. If there is not an appropriate Transition Clinic available, professionals from adult services or children’s services, as applicable, should be invited to attend regular normal clinic appointments.

Young people should be asked for their permission to share a full electronic copy of their health records with adult services and be offered a copy too.

At least one joint review should take place with children’s services leading, and at least one with adult services leading.

Standards

Each young person with a long-term condition has at least one joint with children’s services leading.
Professionals from adult services introduce themselves to the young person and their family and explain their role.

Young people moving into adult services will need to know what to do if they become unwell. Professionals should ensure the young person’s GP has the necessary information to support them. The young person should know which hospital they are likely to be taken to.

Young people with learning disabilities may also need additional support to safely access emergency and inpatient care, including a hand-held Health Information Passport. When young people are receiving continuing care carers (or parents) may continue to provide the young person’s “everyday” care using the Carer Skills Passport www.carerskillspassport.org.uk

Standards

Each young person has a clear plan for access to urgent (emergency) care including a self-management plan and the role of their GP.
Young people have the opportunity to visit adult A&E and inpatient facilities before moving to adult services.
Support for young people with complex long-term conditions in inpatient settings includes carers (or parents) in reaching out to continue to support the young person’s “everyday” care needs, where appropriate.

Eventually, the young person will be ready to attend the adult clinic or be admitted to the adult hospital ward.

With appropriate transition support, young people should feel confident and ready to make this decision when they are 16 or 17. This means that children’s services can provide support to adult services until the young person is properly settled in.

Standards

The young person themselves, adult and children’s services decide and clearly communicate the date after which the young person will be admitted to adult services if they require inpatient care.
The young person themselves, adult and children’s services decide and clearly communicate the date after which the young person’s outpatient reviews take place in the adult sector.

Young people should be asked for their permission to share a full electronic copy of their health records with adult services and be offered a copy too.

At least one joint review should take place with children’s services leading, and at least one with adult services leading.

Standards

Each young person with a long-term condition has at least one joint with adult services leading.
Attendance at adult clinics for transition patients is actively monitored and non-attendance is followed up.

Finally, usually before their 19th birthday, the young person should feel confident and well-supported in adult services and it will be possible to discharge them from children’s services.