You can use this ‘Voice Bank’, and create your own local one, to understand and reflect on what CYP want for their health and from their healthcare. This CYP voice can help to guide strategic planning, organisational change through quality improvement, individual change in practice and to prompt further CYP engagement on the issues that are key to CYP.
- COVID-19 Book Club
Children and young people have been experiencing the impact of COVID-19, in many ways, from education, to their health, discussions and decisions about the vaccine and in living in a virtual world. We worked with young people (16-25 years old) throughout 2020 and 2021 to make sure their voices were heard and could inform and influence decision makers.
Six young people aged 16-25, with a trainee paediatrician and RCPCH staff, formed the COVID-19 Book Club. The club met for an hour each week to review the studies and identify key themes. They had training on how to read the studies, use collaboration software and understand the NHS recovery plan approach. And, one club member, even built some AI to scan the studies for key stats and help theme into different categories.
The Book Club wanted to make sure that children and young people’s wishes, experiences and views around the impact of the pandemic were highlighted and understood, supporting the NHS to include their needs in recovery plans and winter planning in 2020.
The COVID-19 Book Club re-formed in May 2021 to look ahead to a potential vaccination programme for young adults and subsequently young people. They created new inclusion and exclusion criteria to identify a list of published insights from young people and young adults on the COVID-19 vaccine and reviewed these sources each week in their hourly meeting. As before, they invited external speakers to meet with them to discuss different issues such as consent, the scope of JCVI (Joint Committee on Vaccination and Immunisation) and more.
Through the club's reviews of the published comments, concerns and hopes of others, they identified recurring themes for any decision makers to take into account for a vaccination programme. Their insight was shared with the Chief Medical Officers, Department of Health and Social Care, NHS England, Public Health England and other decision makers to help influence thinking.
- Everyone Deserves the World - on child health inequalities
Everyone is entitled to being healthy, happy and well, to be loved, not be hungry and be looked after. RCPCH &Us spoke to 500 children and young people across the UK to explore these questions:
what might stop them being well and what can make a positive difference
Take a look at what they said, and the themes that stood out for RCPCH &Us, in this letter:.
When we got help to quantify the results, we found there 1,718 responses to the question about things that stop all children and young people from staying healthy, happy and well linked to health inequalities.
- 57% of responses that were linked to a lack of money: impacting on not being able to afford food, transport, school costs (e.g. uniform, trips), technology in the home, clothes, being able to do things they enjoy.
- 23% of responses that mentioned those facing hardships: e.g. through family circumstances, where they live, not having a job, pollution, being in unsafe places.
- 20% of responses that talked about the impact on different community groups: e.g. having disabilities, being from different ethnic backgrounds, being in homes and families that don’t keep you safe, having a chronic illness, facing discrimination.
- Paediatrics 2040 - vision for the future of paediatrics
Paediatrics 2040 is the RCPCH vision for the future of paediatrics in the UK, focusing on four areas: data, innovation, models of care and working lives.
For its publication in 2021, we spoke with hundreds of children and young people about the best possible paediatric services and staff of the future. Five youth authors, aged 11-19 helped write the 'Voice matters' chapter, along with nearly 900 children and young people who shared their views and helped to choose priorities on ‘What knowledge, skills and attitudes doctors need when working with children and young people” and “What would revolutionise care.”
- State of Child Health 2020
State of Child Health is the RCPCH report on the health and wellbeing of children and young people. It looks at the evidence on health outcomes and data trends across the UK, all available on a dedicated website.
For its re-launch in 2020, RCPCH workers spoke and ran workshops with hundreds of children and young people from all ages and backgrounds - about mental health, family, making health choices, home life and getting the right support. Here's a rundown:
- We ran sessions in Cardiff, Rhyl, Enniskillen, Belfast, Derry/Londonderry, Brighton, Dumbarton, Edinburgh, London, St Albans, Warrington, Lincoln, Northampton, Luton, Milton Keynes, Beverley, Ipswich and beyond.
- We got comments online from CYP all over the country.
- We held a #voicematters vote with over 1,700 children on the report's topics.
- Then, we had two groups of youth authors, aged 11-22, look at the results.
The first thing we had to do was to crunch the numbers, looking at all the sticky notes, papers and drawings to work out what we had found... We had to have help. We couldn’t do it all ourselves as youth authors. (We even laughed when we heard how many ideas were collected!)
In total, 3,757 ideas shared were shared by CYP from 6 to 25 years. On the question, “what keeps you healthy, happy and well?”, the top results across the UK were ‘Food & Drink’, ‘Emotional health/wellbeing’ and ‘Places to go/Things to do - though responses were different for each nation.
CYP voice informed QI project ideas
We want to help health care professionals to act on what the national CYP voice is asking for, by making the changes that they ask for in your local area using Quality Improvement methodology.
Find below a series of QI project ideas that have been informed by the RCPCH Voice Bank. You will find QI project plans with a guide as to how to work through QI methodology.
When you start your project please email firstname.lastname@example.org to let us know. Completed project will receive an RCPCH Engagement Certificate and are encouraged to be submitted to the RCPCH Conference
- NHS Long term plan - what children and young people want
Over 300 young people took part in workshops, events and activities to share their views on what would support their health and that of children and young people over the next 10 years. The full report from the consultation activity was shared with NHS England as part of the consultation in preparation for the Long Term Plan.
- Young people's experiences of health transition
We asked young people about their experiences of the health transition process. They highlighted where services have worked well to support them and their wishes for the future; to recognise individual needs, get support on mental health and much more. We bring together young people's views from the RCPCH &Us network and other organisations.
What is a good transition process for young people?
When sharing their experiences on transition with RCPCH &Us, young people highlighted six key elements for creating a good transition process:
- Recognise and discuss individual needs in young people friendly terms
- Look at transition holistically, to include advice on: social, emotional, educational, geographical, employment, relationships and physical health
- Adult services to make social connections and have a long term relationship with young people, to provide continuity of care
- Multidisciplinary teams are important and should meet regularly to prepare the young person for transition
- Signpost to local services, resources and knowledge
- Support young people with their mental health
Charlotte, a member of RCPCH &Us, presented at the RCPCH Conference in 2016 and shared her experience of transition:
Waking up after surgery on an adult ward for the first time was nothing short of scary. My parents couldn't stay with me and it felt worlds away from the safe haven of a children's ward. At an already stressful time the addition of moving to and navigating round adult services can feel all too much for many young patients. Often transition happens suddenly with little warning. The paediatrician who knew you so well is replaced by a GP who struggles in the short appointments to grasp the whole complex picture.
We asked young people to let us know what works well for them and what their wishes are for the future. Here are some more of their experiences:
We need doctors who are aware of our whole life and experience, that know how to empower us to be able to speak up and who use different strategies to support our voice in clinic.
Having an appointment with my doctors [children's] with the one from the new hospital [adults'] helps and we can go on a visit before.
The information should change when you get older - at 16 I went with what I was being told. At 18 I understand more and what you do and why. Transition is when you go through all of this [in paediatrics] then you go straight to adults.
It is imperative for these young people to have a key named worker who is able to support us to access and negotiate the terrain of adolescent and adult services. The thresholds are different, the link up between services are different, we need someone to help us navigate this minefield. Secondly, it is imperative that everyone who may be involved in dealing with young people through the transition age have access to resources / central databank which allows for better signposting of services and support.
My wish is that I am trusted with more information.
What's in the Long Term Plan for the NHS regarding health transition?
During the development of NHS England's Long Term Plan, we asked over 300 children and young people to share their hopes for the next ten years. Over 6% of young people highlighted transition as an important area to be included within the Long Term Plan.
Here are some of the young people's views:
I've been in my service for 15 years. I was talked about transition when I was 12 and it made me really wary. I transitioned at 15 and then I could accept it was happening.
I don't feel like I had enough information about my options, I went with what the professionals tell me.
Someone who was two years older told me about transitioning. I'd been introduced to another patient so that when I went to clinic I saw a familiar face and could ask questions.
Forms of support like a key worker for each person so you can continue to be supported through transitions / waiting times.
Other resources where you can find the views of young people on transition:
- YPHSIG- RCPCH Young People's Health Special Interest Group
- Health Talk - videos of young people outline their experiences of using both child and adult clinics, and they offer advice on how professionals should treat adolescents
- NICE guidance on the transition between child and audlt services (video) - Thines, a service user who helped develop NICE guidance, shares his experience
- National Children's Bureau on transition (video)- Jack and Tina share their experiences and examine what data tells us about the needs of young people with long term health conditions
- British Heart Foundation - Transition: your journey (video) - this film is designed to help young heart patients through transition
- 10 Steps Transition to Adult Services (video) - Hannah shares her story and the 'wrong way' to discuss transition
- NCEPOD (video) - Each and Every Need provides a view of CYP living with neurodisability, and this video shares Christopher's experiences
- Barts Health (video) - guidance for parents and young people going through transition
- Academi Wales (video) - Beth's story of Down's Syndrome, narrated by her mother
- Roald Dahl's Marvellous Children's Charity (videos) - as part of the 'Everyone's Business Campaign', the charity have short films of the different experiences of transition from Roald Dahl Nurses, young people and parents
- NHS Youth Forum created a poster (PDF - can display in healthcare settings) and video to promote the benefits of young people accessing peer support