Transition and Adult Congenital Heart Disease

Transition and Adult Congenital Heart Disease

Transition is a process of guiding and preparing young people and their families for adulthood.

The Transition Service offers teaching, educating young people, providing them with knowlege of their own heart condition and surgeries enabling them to be their own advocate, therefore preparing them for the transition to adult services usually between the ages of 16-18 years old.

Transition clinics are held to streamline care and transition teenagers to adult congenital services.

Alder Hey cardiologists continue to provide adult congenital clinics at Liverpool Heart and Chest Hospital and specialist multidisciplinary pregnancy clinics at Liverpool Women’s Hospital.

Young People & Transition Service  - Year 6 Age 10-11 'Start of Something New'

Children with the Fontan Circulation are invited to attend an all day Forum on a Saturday in June, based in Alder Hey Cardiac Clinic for all those starting Secondary School in the upcomming September. The all day Forum is lead by the Cardiac Nurse Specialist's and Clinical Psychologists. This Forum day offers;

  • Practical advice for coping in Secondary School with a single ventricle, everything from nagivating around the school, carrying heavy school bags, equipping teachers and support staff with information on the young persons heart condition and information on Physical Excercise.
  •  Written information on Care Plans including letters for PE teachers. Secondary schools are contacted by a Cardiac Nurse Specialists to discuss the new starter ahead of the school year.
  • Psychological support is provided and coping strategies are discussed for both the young person and parents coping with this next big step. Joint and Individual sessions for both young person and parent are available with a Nurse Specialist and Psychologist.
  • Opportunity to meet other young people and families in similiar situation

Half day follow up sessions are provided approx. 6 months into the school year. This is the start of the medical Transition pathway for those with single ventricle circulation.

Introducing Transition through Young Peoples Clinics

  • Start of the transition pathway for all patients
  • Young people can be seen as many times as needed at all stages but will be offered at least one
  • All information is given in an age appropriate manner
  • At all stages, there is access to a joint Nurse Specialist and Clinical Psychology Clinic held monthly
  • Young peoples clinics are held mainly in alder Hey Hospital but alos hospitals acorss the region including, Blackburn, Preston,Bangor, Isle of Man with plans for Leighton.
Transition Clinic Feedback

Early Stage Transition- Age 12-14 Years Old

Young Peoples clinic- aimed at young people and parents/ carers with Cardiac Nurse Specialist.

  • Starts the process of teaching young people about their heart condition, their surgeries and their medications
  • Life issues are discussed relating to endocarditis, smoking, alcohol, diet and excercise
     

Mid Stage Transition- Age 14-16 Years Old

  • Building on the knowledge and information given in the previous stage
  • Lifestyle issues are discussed including alcohol, recreational drugs, contraception and pregnancy
  • Discussions regarding careers and GCSE choices depending on Cardiac condition

Late Stage Transition- Age 16-18 Years Old

  • Building on knowledge and information given in the previous stage
  • Teaching on how to navigate the NHS and how to seek advice
  • Discussions on further support and welfare advice
  • Information and understand of consent, data protection, privacy and rights to information
  • Preparation for the adult hospital and transfer over to the ACHD service

Transition- 17- 18 Years Old

  • Final preparations for transfer to adult services
  • Completing a Management plan and Pathway
  • Opportunity to visit Liverpool Heart and Chest Hospital (LHCH) including introduction to the nursing and medical teams and a walk around the clinical area's, Wards, ICU etc
  • Transition pack with written information and patient held record will be provided
  • Additional preparation for young people with special educational needs with the traffic light passport

Transition/ Handover Clinic

  • A joint clinic is held in the cardiac clinic at Alder Hey Children's Hopsital with two Cardiologists, and two transition Nurse Specialists, one from Alder Hey and one from Adult services - Liverpool Heart and Chest Hospital.
  • At this clinic an Echocardiogram and ECG are performed and a consultation wth both Cardiologists who will discuss the plan for the future.
  • An appointment will be booked at this clinic for the first follow up clinic in Adult Services.
  • A meeting with the Adult Nurse Specialist will see all contacts details and further information is transfered over to the Adult Service
     

Alder Hey Children's Charity
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