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In the UK, the NHS advises that the planning of adult care services process should begin when the child is 13 or 14, and should be tailored to fit the needs of the child.¹

THE CHALLENGES

Medical

When transitioning from paediatric to adult services, many young people said they had been ‘dropped’ and not taken seriously. Challenges include:

• little to no guidance after discharge from paediatrics on how to navigate the move into adult services
• no clear, smooth handover with no opportunity to meet with new doctors before the transition
• feeling alone, as there is often very limited signposting to support groups that could help
• poor communication and coordination between hospital trusts and specialists

Educational

Transitions in education—from primary to secondary, from college to university, can often be a traumatic experience for a young person. Challenges include:

• a sudden drop from one-to-one or tailored support to less or no support
• educational bodies ignore the requests of students or parents unless an HCP is involved
• teachers displaying negative or discouraging attitudes toward students
• Educational, Health and Care Plan (EHCP) or one-to-one support is often removed at higher education

Independence

Many young people frequently deal with a lack of support and preparation for everyday independence as they grow, these include:

• using public transport links after years of organised and regular school transport
• managing money and finances
• navigating work experience, jobs or careers
• balancing disclosure of needs with fear of losing opportunities
• managing multiple hospital appointments and services without support

Self-advocacy

From adolesence, young people are typically expected to self-advocate in complex systems and situations, which can affect confidence. Challenges include:

• knowing and understanding medical terms
• reading and signing important documents
• attending meetings and appointments alone
• repeatedly explaining needs to professionals who don’t always listen
• many are given no choice but to prove themselves to receive even basic care

MEDICAL TRANSITION TIPS

Keeping your own medical journal
It’s easy to forget information once you leave the room, so always take a notebook or tablet into key meetings to record important information.

Know your rights
You are entitled to have an advocate present with you at appointments and meetings. You can also contact the Patient Advocacy Liaison Service (PALS) if you have any concerns, complaints or questions about your care.

Be organised
Keep an organised file of any hospital letters and documents together with appointment dates and information. Be sure to keep a succinct summary of your protocol, any medication you regularly take and any known allergies or symptoms.

Have the discussion
Set aside time to talk about your healthcare plan and medical history with someone who was present in your childhood years (a parent or guardian).

Build a support system
Form a circle of people who can help and support you. This could be friends, family, charities and peer support groups.

Take your time
It’s important not to be pressured into making difficult medical decisions. Take the time to understand what you think is best for your health.

Self- care
Practice self-care after appointments. This could be having a favourite drink, spending time with loved ones or watching your comfort TV show.

References
[1] nhs.uk/social-care-and-support/caring-for-children-and-young-people/moving-from-childrens-social-care-to-adults-social-care

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This article has been supported by funding from
Springworks Therapeutics and Alexion, AstraZeneca Rare Disease. The sponsors have had no editorial control or influence over the copy and the opinions are those of the contributors alone.

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