Hidden health - a parent-led card and toolkit

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 toolkit helps raise awareness of conditions, support services and what makes them or their child a warrior.

Their #HiddenHealth #ThisIsMe toolkit and cards were developed through six months of consultation with parents, carers and health professionals in 2018-19, and launched at RCPCH Conference and exhibition in May 2019.

Hidden health includes long term conditions, such as epilepsy and asthma, and hidden conditions, such as mental health needs and heart conditions - and the impact 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 you 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

How the toolkit was developed

The project members used the the views of more than 20 parents and 15 young people, capturing how and where they receive the best support for hidden health needs, examples of great practice and ideas for future improvement. The team then created checklists, cards and support materials to help parents/carers get the support they need and help health care professionals be able to deliver the best service possible. 

The team then ran two roadshow events in January 2019, speaking with over 65 parents/carers and 40 healthcare workers. The events with LivPac parent carer forum and at Alder Hey Children’s Hospital sought feedback on whether the materials made sense and were fit for purpose, and what improvements needed to be made. 

The results were reviewed in March and finalised with members of the parent/carer project team presenting about #HiddenHealth to the UK Aspiring Paediatricians Society session at the RCPCH Conference and exhibition in May 2019.

You can download the toolkit, cards and poster for free below. For more details, please contact and_us@rcpch.ac.uk.