Communication, Trauma, and Weight: Making sure “sickness to prevention” works for all young people

This report outlines their research into a core question: “Do young people feel listened to when engaging with NHS services about their physical and emotional needs, and if not, how do we improve this?”

The authors of this report have focused on the “Sickness to Prevention” part of the NHS 10-Year Health Plan produced by the Department for Health and Social Care, which looks at reforms to the NHS and wider existing community services. The group drew on the lived experiences of diverse young people to identify what they feel are key gaps in the plan. 

This document was created by children and young people. To ensure everyone can engage with it we are producing an accessible version which will be available shortly.

The group developed an online survey with a mixture of qualitative and quantitative questions which was completed by 147 young people from across England. They addressed the question "Do young people feel listened to when engaging with NHS services about their physical and emotional needs, if not how do we improve this?" through three themes: communication, trauma, and weight.

Across all themes they found that young people often don't feel listened to in healthcare settings. The extent to which young people feel heard was influenced by key factors such as age, gender, ethnicity, disability, experience of trauma and weight. The impact of feeling unheard on a young person is diverse, ranging from days missed of school, misdiagnosis, worsening health, a mistrust of health professionals, and even experiencing medical trauma.

Based on their research, the group have a number of recommendations based around the research themes.

Communication

• Collaborate with young people on a ‘communication protocol’ to ensure every young voice gets heard.
• The LEMUR protocol could be used as starting point when interacting with a young person:
  • L - Look at a young person when you are talking to them and direct questions and explanations at them.
  • E - Explain all decisions and keep them updated on their care.
  • M - Make time for young people to ask questions and share any worries.
  • U - Understand how the medical problem is affecting a young person on a broader level.
  • R - Remember, report, refer: Remember to check for young people's consent. Report any concerns or disclosures from a young person at the first sign of an issue. Refer young people to support.
• Expand current waiting well provisions for children and young people.
• Expand awareness, training, and resources to tackle discrimination.
• Increase support for young carers and young people ‘on the move’.

What needs to be explored further?

• The experiences of young people in care or care leavers.
• Specific research is needed into how different ‘groups’ experience healthcare and what can be done to address this inequality.

Trauma

• There is an urgent need to explore the experiences young women have in healthcare settings and tackle gender-based inequalities in care.
• Collaborate with young people to further explore the causes of medical trauma and co-design initiatives addressing them.
• Integrate lived experience within service design so there is an increased understanding of how trauma impacts young people, how it affects them accessing healthcare, and how healthcare services can be improved to provide better support for young people following a traumatic event.

Weight

• Work to normalise ‘fat’, but mirror individual language choices whilst no consensus on terminology exists.
• Complications from Excess Weights (CEW) Clinics need to create guidance for referrals to ensure conversations are non-pressured and neutral, with leaflets for young people and their carers so they access unfiltered information.
• Wait before you talk about weight.

What needs to be explored further?

• Co-produce qualitative research on the impact of conversations around fatness in the NHS, with fat young people and fat advocates.
• Capture intersectional experiences across race, gender, and disability.
• Use this to develop training and guidance to improve experiences in the NHS.

The NHS Young Researchers are 25 young people aged between 16 to 24, part of the wider NHS Youth Forum, who work alongside Barnardo's and NHS England to advocate for valuable participation and provide a voice for young people within healthcare services. 

This year, the focus for the Young Researchers' projects were on the NHS 10-Year Health Plan produced by the Department for Health and Social Care. The plan looks at reforms to the NHS and wider existing community services to close the gaps and ease pressures that they are currently facing. There are three shifts as part of the plan: Hospital to Community, Sickness to Prevention, and Analogue to Digital. All Young Researchers were split into three groups to focus on one particular shift in the plan.