'Your Health, Your Participation’: a workshop on young disabled people’s voices in healthcare at Youth Voice Matters Conference 2021

Making Participation Work, funded by the Department for Education and jointly delivered by Council for Disabled Children and KIDS, hosted the 2021 Children and Young People's Conference: Youth Voice Matters which brought together children and young people with special educational needs and disabilities in an online space to learn about their Rights and to develop their participation skills. Louca-Mai Brady and Jack Welch co-delivered the workshop 'Your Health, Your Participation' at the conference and share here a blog about the workshop they delivered.

Introduction

Louca-Mai recently edited a book about young people’s participation in health services to which lots of young people, including Jack, contributed. While there are lots of great things happening, one of the things we found in the book is that often children and young people don’t have as much of a say as they should about the health services they use, or how they can make those services better through their involvement. We also found that those most likely to use health services, including some disabled children and young people are less likely to be involved in participation. A lot of participation is still controlled by adults; young people need more of a say in what they are involved in and how. During the COVID pandemic a lot of participation has been online, this has made things easier for some young people but might exclude others (see our blog post about this). This is a great time to think about how to do things differently so that everyone is included

So, we were excited when the Council for Disabled Children invited us to run a workshop at the Making Participation Work children and young people’s conference (see Conference video here). In the workshop we talked about what we have learned and discussed what disabled children and young people can do to have their voices heard, and acted upon, in health services.

Jack’s Five Lessons

It is often easier to talk or write about young people’s participation than it is to deliver in reality. People might be keen in theory, which is great, but making sure young people’s voices are part of how services are designed and delivered can be much harder to get right. From positive examples that have worked for me, this can be summarised into five lessons (as learnt from my own experience as a young person involved in participation):

  1. Involvement in research and understanding experiences of young people in health services is essential.

  2. Seeing the difference that projects make and how people with the power listen and act on your suggestions.

  3. Co-production can be really helpful - involve young people in all stages of a project and sharing power.

  4. Being open to new ideas and difficult questions is very important to change things.

  5. To be inclusive, participation needs to involve lots of different views and experiences, so everybody’s voice is heard.

While there is no particular order in which to go about meeting these standards, it is in my view that unless those who have power and influence to act on the wishes of young people, there will perhaps be little progress anywhere else. Indeed, unless the attitudes of the adults in the room are open to being challenged about what works and does not, for example paediatric services inside a hospital ward, there will be (not so) surprisingly little change to improve the experiences of young patients. In many cases, it is useful to learn from good practice as a starting point and identify the obstacles that had to be overcome by other projects which are providing opportunities for young people. When it comes to co-production, it is letting those who have used healthcare services take the driving seat and that may come with its own difficulties to some who are not so used to sharing power at a community level.

What matters to young disabled people?

We asked participants two questions:

  • If you were a hospital boss, what would you do to improve disabled children and young people’s participation?

  • What are your recommendations for making sure disabled children and young people have their voices heard, and what they say acted on, in health services?

Accessibility and inclusion

  • Making sure that if there are criteria for participation that you aren't excluding anyone

  • Make sure that professionals are trained in working with disabilities and special needs

  • Don't assume that everyone uses speech - give people other ways to share their views

  • Don't assume that everyone can use the phone

  • Ask young people questions they can understand

  • More opportunities for participation. Advertised well and at sensible times / places that are accessible for as many people as possible

Improve communication

  • Have lots of information available online, with photo profiles of all staff that are patient facing, having an option to email, have easy read info, have communication cards and white boards in each meeting rooms

  • Making sure hospital staff talk to each other and other professionals (so young people don’t need to keep repeating their story/experience)

  • Feedback, complaints and patient experience surveys that are accessible to all, easy to find and use and acted on

  • Have a range of ways to give information

Working in young people-centred ways

  • Staff who see people as individuals and not the condition or illness

  • Make time to really listen to everyone/give people longer to speak

  • Make sure people with SEND are spoken to in a non-tokenistic, meaningful way

  • Make sure young people are communicated to in the same way as parents/adults

Power and control

  • Young people co-designing policies

  • Young people to be involved from the start when setting up services or redesigning services

  • If a person feels their voice is not heard, respected or they feel treated discriminated because of their age, gender, disability etc there is someone they can go to who can ‘police’ this and support them (via feedback/comments options available)

And finally, an important point about learning from what has already been done. As our book has shown there are some great examples of inclusive participation practice already so it’s important to learn from these and also share learning from our own work.

Images of Jam boards from the workshops (don’t worry if you can’t read the text on these images, all content is covered in this blog. We’ve just included them here so you can see one of the ways young people shared ideas):

Conclusion

A lot of participants felt that to enable young disabled people to have a voice and create a space for their involvement in healthcare, the focus should be on access and inclusion rather than the barriers created by their disability. Accessibility was also an important theme, presenting information inclusively so that more young people can understand it and share their thoughts and opinions (e.g. using Easy Read formats). Making these kinds of reasonable adjustments does not need to be expensive or complicated either and making participation inclusive and accessible makes things easier for all children and young people.

Another key issue is power and control – who decides which children and young people participate, when and how. Involving young disabled people in planning and doing participation, and training and recruiting staff, as well as in designing and developing health services is an important way to address this. Power and control also includes young disabled people having a say in their individual care as well as anything that will affect the services they use: ‘nothing about us, without us’.

And finally – make sure that participation is meaningful and leads to change. In the words of one participant:

“Show people their voices are heard by giving them examples of things that have been put in place, and also making sure they feel valued and what they say is important and they are not just a participation tick box exercise."

Further information

Find us on Twitter: @Dr_Loucamai @MrJW18 and #YPHealthParticipation for discussions related to the book

A blog post about young people’s participation during COVID: https://www.transformingsociety.co.uk/2021/01/07/the-magic-of-participation-why-embedding-young-peoples-participation-in-health-services-matters-now-more-than-ever/

The book: Embedding Young People's Participation in Health Services: New Approaches https://policy.bristoluniversitypress.co.uk/embedding-young-peoples-participation-in-health-services

GenerationR young people’s health research advisory groups: https://generationr.org.uk/

NHS England Youth Forum: https://www.england.nhs.uk/get-involved/get-involved/how/forums/nhs-youth-forum/ (also check out if your local hospital/NHS Trust has a youth forum. If not information on how to set one up is available here.

RAiISE: young people-led organisation which aims to improve the support provided to young people with invisible illnesses in education: https://raiise.co.uk/

RCPCH & US: https://www.rcpch.ac.uk/work-we-do/rcpch-and-us

Youth Social Action in Health and Social Care: Youth-Social-Action-in-Health-and-Social-Care-201909-1.pdf (iwill.org.uk)

Mefirst Resources Resource Hub (mefirst.org.uk