Children's Hyperinsulinism Charity

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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.

Transitioning from Paediatric to Adult Care – Tips from The Children’s Hyperinsulinism Charity

Moving from children’s care (paediatrics) to adult healthcare needs careful planning. This process should ideally start early—around school Year 9, or when your child is about 14 years old. Starting early gives time for everyone, including your child, healthcare professionals, and other professionals, to work together and make the transition smooth and stress-free.

Early planning for the transition ensures that this change doesn’t happen suddenly, leaving your child without a plan or support. It allows time for any referrals to be organised in advance, and the right professionals and settings to be identified to continue their care.

For children with complex conditions or who see many different specialists, co-ordinating care in just one hospital might not be possible. This makes it even more important to plan ahead and ensure involvement from their multi-disciplinary team.

Helping Your Child Understand Their Health

One of the most important steps in this process is helping your child understand their condition and how it affects them. They should know what to do if their symptoms change or if they have any concerns.

Help them learn who the key healthcare professionals are, what their roles are, and how to contact them. There should also be a named contact person who supports your child through the transition.

It can be helpful to have a handover period, where the paediatric and adult teams work together in joint clinics. This gives your child time to get to know the new team and feel confident that they’ll continue to receive great care.

During this time, it’s important for the whole family and any caregivers to understand your child’s medical rights. This includes knowing how to secure any reasonable adjustments or accommodations that might be needed for their care. It’s also a good idea to know what to do if you have concerns about the care being provided.

Encouraging your child to take part in their own healthcare decisions as early as possible is key. Start by involving them in their appointments, encouraging them to ask questions, and using resources that promote self-advocacy. This will help them gradually take more control over their care.

Encouraging Independence

As your child grows older, they may feel ready to attend their appointments on their own. This can help them talk more openly about any issues or concerns. However, it’s always okay for you to be nearby (e.g. in the waiting room) in case they feel anxious or need support. Reassure them that it’s also fine for you to be present during important discussions, like decisions about medication or treatment. This can help the child/young adult to talk through the information and ensure they have understood everything before they make a decision.

During transition clinics, it’s important to think about any support your child might need. They may benefit from appointments at certain times, help with communication, or receiving information in larger print or broken down into simpler steps.

Managing Their Care

Encourage your young adult to take an active role in managing their healthcare. If they have a mobile phone, they can use it to set reminders for appointments, record notes or voice memos with questions, or even track symptoms by recording videos at home. This can ease the pressure of having to remember everything during appointments.

Hospital Passports can be a great resource to note down medications, healthcare professional details and more. CamRARE have partnered with us to create a passport that folds down into a lanyard size and can be edited when needed as a pdf – get yours here: https://hyperinsulinism.co.uk/self-advocacy/

It’s also essential that your child understands their new responsibilities. For example, if they miss an appointment, they may be discharged and will need to be referred again. Helping them understand how to reschedule appointments and in good time is key.

Establishing a good relationship with their GP and knowing how to order repeat prescriptions and medical supplies in advance is also very important for managing their condition independently.

For Children with Additional Needs

If your child has additional needs, they should have access to annual health checks with their GP. You can find more information on health checks from your healthcare provider.

More information is on this link: https://hyperinsulinism.co.uk/annual-health-checks/

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: https://www.nice.org.uk/guidance/ng43/chapter/Recommendations#overarching-principles

The following link provides all the NICE guidelines on transition including support before and after transition https://www.nice.org.uk/guidance/ng43

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