Children's Hyperinsulinism Charity

Courage Hope Inspiration

Transitioning from Paediatric to Adult Care

Why is there a need for Transition?

Children with Hyperinsulinism need regular multidisciplinary team input – dietetics, psychology, developmental paediatrician.

Young adults with Hyperinsulinism still have complex management requirements that are best supported using this multidisciplinary approach.

The move from paediatric to adult services may be a challenging time for adolescents transitioning to self-management and advocating for support with education, work placements and getting medical and/or care needs met.

Ffion on her 16th birthday

National Institute Of Clinical Excellence (Uk)

Transition Planning

Timing and review

1.2.1 For groups not covered by health, social care and education legislation, practitioners should start planning for adulthood from year 9 (age 13 or 14) at the latest. For young people entering the service close to the point of transfer, planning should start immediately.

Note: For young people with education, health and care plans this must happen from year 9, as set out in the Children and Families Act 2014. For young people leaving care, this must happen from age 15-and-a-half.

1.2.2 Start transition planning early for young people in out‑of‑authority placements.

1.2.3 Ensure the transition planning is developmentally appropriate and takes into account each young person’s capabilities, needs and hopes for the future. The point of transfer should:

not be based on a rigid age threshold.

take place at a time of relative stability for the young person.

1.2.4 Hold an annual meeting to review transition planning, or more frequently if needed. Share the outcome with all those involved in delivering care to the young person. This meeting should:

involve all practitioners providing support to the young person and their family or carers, including the GP (this could be either in person or via teleconferencing or video) involve the young person and their family or carers, inform a transition plan that is linked to other plans the young person has in respect of their care and support.

Note: For young people with a child in need plan, an education, health and care plan or a care and support plan, local authorities must carry out a review, as set out in the Children Act 1989, the Children and Families Act 2014 and the Care Act 2014

Find out more:

The following link provides all the NICE guidelines on transition including support before and after transition

Young Adults Transition from Paediatric to Adult care
Click to Download

Aims Of Hyperinsulinism Transition Clinics

In line with established NICE guidance

  • Supporting education
  • Empowering self-management
  • Addressing parental and care-giver concern
  • Addressing on-going medical issues
  • Dealing with impaired awareness of hypoglycemia
  • Providing advice around driving
  • Providing support to higher educational institutions and those in employment
  • Pre-conception genetic counselling, where appropriate
  • Continued dietetic advice.
  • Alcohol and recreational drug advice

Medical Issues Encountered In Adolescent And Young Adult Patients With Chi

Confirmed mutation causing CHI

  • Symptom control
  • Risk of diabetes
  • Managing diabetes in non-pancreatectomized individuals
  • Managing diabetes in pancreatectomized individuals
  • Impaired hypoglycemia awareness

No mutation identified (in addition to above)

  • Exploring a genetic diagnosis
  • Counselling around diagnostic uncertainty

Further Information

Moving from children’s social care to adult care

Thanks to

Dr Pratik Shah

Consultant in Paediatric Endocrinology and Diabetes and Honorary Senior Lecturer

Patron of The Children’s Hyperinsulinism Charity