Empowering Children and Young People in Health Decision-Making Process

Health Participation Project My Health, My Say Sue Mustill 21-Mar-25

My Health, My Say Introduction In summer 2021, NHS Herefordshire and Worcestershire Integrated Care Board recognised that there was not a system to find ways for children and young people to influence decision making about future health services across the two counties. We started our fieldwork in June 2022 and the findings in this presentation cover that period. Over the course of the project, progress has been made in both counties to enable children and young people to share their views of health services. 21-Mar-25

My Health, My Say Purpose To identify the present functions that are in place for children 0-19 (up to 25 with SEND) to participate in relation to their health needs in order to influence thinking and decisions within commissioning and practice To identify the good practice, challenges and gaps in participation along with the methods that children and families would like to engage in participation To develop possible new ways of working to ensure children s voices are sought, heard and then influence My Health, My say 21-Mar-25 4

My Health, My Say Themes for Enquiry Health and Wellbeing Education and Life Choices Community and Wider Connections Appointments SEND in mainstream schools Choice Environment Barriers SEND in special schools Information Inclusivity EHCPs Feedback mechanisms Environment My Health, My Say 21-Mar-25 6

My Health, My Say Participation Young People* Total Women Men Professionals Participants 344 534 99 38 1015 *11-25 yrs Total Surveys Completed Events/ Sessions Focus groups Workshops 1-1 Engagement Opportunities Interviews 507 51 51 10 619 My Health, My Say 21-Mar-25 7

My Health, My Say Participation Family Events and Holiday Activities 16 Children's Centres and Family Hubs 11 Youth Groups And Events Parent/carer SEND events Surveys 33 0 35 Herefordshire 371 291 44 220 31 Worcestershire Total 404 307 55 220 66 My Health, My Say 21-Mar-25 8

Health and Wellbeing Headlines When asked about their overall experience of appointments 85% said that it was Always good or Mostly good . 65% of parents and carers said it was Not easy or Very difficult to make appointments. This figure was 67% for children and young people. When looking for health and wellbeing information 75% of children and young people use informal sources whilst for parents and carers the figure is 64%. Before attending the emergency department 63.5% of parents and carers consulted another healthcare professional. My health, My Say 21-Mar-25 9

Education and Life Choices Headlines 65.2% of parents and carers said that education and life choices was a concern for their child, 40.7% said it was their main concern 50% of parents and carers thought that class activities at their child's school were inclusive 86% of parents and carers said that they were never or not very often consulted when their child's EHCP was being drafted 67% of parents and carers said that their child's EHCP was not aspirational and 86% said that the contributions from other professionals were not good quality My Health, My Say 21-Mar-25 10

Community and Wider Connections Headlines 35% of young people like to go to a youth club or group in their spare time 51% of young people said cost was their main barrier to accessing activities and 22% found travelling to the activities difficult Nearly 23% of young people said that they were accessing all the activities that they wanted to Only 8% of young people wanted to do a sports activity My Health, My Say 21-Mar-25 11

Education and Life choices, qualitative data example Life Beyond School - What job do you want to do when you finish school? 21-Mar-25 My Health, My Say 12

My Health, My Say Conclusions Health and Wellbeing Parents and carers want a system that informs clinicians of how their child may present at appointments to use the time effectively. Education and Life Choices Parents and carers want everyone to share achievable and ambitious aspirations for their child Community and Wider Connections Children and young people want to be with their friends and be able to choose the activities that they do 21-Mar-25 Presentation Title - Insert > Header and Footer 13

My Health, My Say Recommendation Our recommendation is to create a dynamic participation team which will: Build relationships with existing groups in the community and take consultations out to them Encourage a wider and more diverse range of voices to be heard and promote the building of links to underrepresented communities Allows flex of the resource to work across different parts of the ICB My Health, My Say 21-Mar-25 17

The Final Report Dissemination and further information You can access executive summaries and the whole report here: My Health, My Say | Action For Children Or pick up one of our postcards to scan the QR code For further information or if you cannot access the report online please contact: Sue.mustill@actionforchildren.org.uk My Health, My Say 21-Mar-25 18 Tel: 07929079069

actionforchildren.org.uk /actionforchildren @actnforchildren @actionforchildrenuk 21-Mar-25 My Health, My Say 19