Hidden health - a parent-led card and toolkit now being piloted

Parents from Alder Hey Children’s Hospital worked with RCPCH &Us to look at three elements of being “hidden”: children and young people with a hidden condition or illness; hidden family carers providing support; hidden support services such as forums. Their #HiddenHealth #ThisIsMe card and toolkit are now being tested locally and will be made available after April 2019.

Throughout 2018, children, young people and families worked with RCPCH &Us on topics relating to hidden health needs. These include having long term conditions such as epilepsy or asthma or hidden conditions such as mental health needs or heart conditions - and the impact this has on the health of the carer, whether a sibling, parent or other family member.

What are the challenges?

  • A lack of peer support groups for children, young people or their families where they can meet other people with similar, hidden conditions (Greater Manchester 2018)
  • A need for more consistent support and awareness-raising in schools about hidden health needs with students, families and school staff (Surrey 2018)
  • A need for increasing awareness within healthcare settings - from reception to clinical teams - about hidden health needs, particularly where there are a range of professionals supporting them (Liverpool 2018)

Their primary request is that healthcare workers become more aware of the child as a whole - rather than just their medical condition or illness - and can signpost holistic support for both the patient and their family.

What would help them feel visible again?

Those working on this project shared their own hopes and wishes and collected the experiences of others.

They said...

Something that makes me a warrior, where I need notes sharing between departments, links to be made between symptoms, where I gain strength and empowerment through supporting my child with a hidden health issue.

Liverpool 2018

Conditions that the world and people just don’t understand – mental health, blood disorders, autism, bowel issues, breathing issues (no tubes or gadgets to see), something that isn’t relatable to you.

Liverpool 2018

A new toolkit

The project members have created a #HiddenHealth #ThisIsMe card and toolkit to help raise awareness of conditions, support services and what makes them or their child a warrior.

They are testing the card and toolkit at Alder Hey Hospital from January to April 2019. And after this pilot, they will be freely available to download.

For more details, please contact and_us@rcpch.ac.uk