Patient centred care | Voices and Views

Involving Children, Young People and Family Voice in Committees

RCPCH Children and Young People’s Engagement
Emma Sparrow
The initial problem and its impact

Anecdotal feedback was received by members of College committees (patient representatives, clinical and staff) that there was a need to improve the approach to patient voice in committees and to think about alternative options that are meaningful, relevant and proportionate.

There was a concern that meetings were not always accessible or meaningful to patient representatives, and a need to explore the difference between individual member voice and that of having representative voice. There was a further challenge around ensuring there was appropriate support in place with clear guidance on expectations for committees engaging with children and young people.

The impact this was having was on some patient representatives feeling that they weren’t “doing well enough” in committee meetings as well as not always feeling able to share their views or knowing if they were there to share the views of others. Other committee members shared worries about meetings not being meaningful or accessible and needing to be clearer on expectations.

Causes of the problem

The early stages of the project identified the following causes of the problem:

  • College committees  cover specialist areas where children, young people family members may not feel able to comment on such as the intricacies of epilepsy audit data crunching or cover sensitive discussions such as in regards to child protection or child death  
  • Committee members are predominantly professionals who are skilled and knowledgeable in the areas being discussed. This means that discussions can use jargon and concepts that due the face pace of the discussion, not always be in plain English or allow for patient representatives to feel able to continually ask for clarification
  • By virtue of the meetings being supported by College staff and structures (building access etc.), meetings are during the working week, between the hours of 9-5. Full video and phone conferencing systems are available and routinely used by professionals, but the set up can feel exclusive due to coinciding with the school day or due to start/end times not supporting medical needs such as those who would not be able to travel long distances and take part in the meeting
Project aim statement

In developing the Involving Children, Young People and Family Voice in Committees, the initial project aim, outputs and outcomes were;

Aim:

To develop with children, young people, families, committee members and College staff, guidance on involving patient voice in committees in a meaningful way.  

Output:

A guidance document that references the need to involve, advice on how to involve and examples of good practice involvement from Committees

Outcomes:

  • Patient voice that informs and influences the work of the College (Article 12 of the UNCRC)
  • the best healthcare services possible for children and young people (Article 24 of the UNCRC)
Stakeholders

The RCPCH project team included

  • RCPCH Registrar
  • RCPCH Children and Young People’s Engagement Manager
  • RCPCH Children and Young People’s Participation and Advocacy Coordinator

Stakeholders included:

  • RCPCH Infants, Children and Young People’s Engagement Committee
  • RCPCH &Us Members
  • RCPCH Committee members and College Staff

All shared their suggestions, ideas and experiences of being involved in College committee meetings or programmes, highlighting opportunities and potential challenges for involvement.

PDSA Cycles / solution(s) tested

Plan:

  • Identification of the challenge
  • Desk based research into available resources, relevant theoretical explorations of involvement in committees
  • Sessions with existing children, young people and family committee members to explore their challenges and positive experiences

Do:

  • Online survey to committee chairs, College support staff and wider children, young people and family committee members to capture experiences, opportunities for improvement and challenges to date
  • Workshop sessions with the RCPCH Infants, Children and Young People’s Engagement Committee to review the challenges identified and to provide solutions

Study:

  • Guidance development sessions with the existing children, young people and family committee members to refine the guidance and to determine clear recommendations
  • Guidance, consultation with stakeholders

Act:

  • Publication of the Guidance
  • Meetings with a small number of committee work plan leads (College staff) to develop engagement proposals based on the guidance
  • Delivery of new approaches to committee voice
  • Inclusion of committee voice within Division Engagement Plans
Data results

Due to the qualitative nature of this study, outcome measures link to our initial output markers:

Output:

A guidance document that references the need to involve, advice on how to involve and examples of good practice involvement from Committees. ACHIEVED – guidance document published following involvement of over 49 stakeholders

Outcomes:

  • Patient voice that informs and influences the work of the College (Article 12 of the UNCRC). ONGOING – there are now over 15 College committees or programme boards that are using engagement proposals based on the guidance. 2 committees have well supported patient voice representatives.
  • The best healthcare services possible for children and young people (Article 24 of the UNCRC). ONGOING – through increasing voice in Committees to inform and influence discussions and decisions
How this improvement will be sustained

The RCPCH Children and Young People’s Engagement team is a core function of the RCPCH strategic plan and offer to members and the wider child health workforce. As such, the ability for workers to access engagement expertise, information, advice and guidance, resources and materials remains a sustainable offer. Through oversight by the RCPCH Registrar who holds the portfolio for children and young people’s voice within the College and the Infants, Children and Young People’s Engagement Committee at RCPCH, there remains active scrutiny and a drive for further development. 

A series of materials have been created that are used by the Children and Young People’s Engagement Team when working with a Committee to develop their engagement proposals. This includes working with them over 2 – 3 meetings to look at:

  • Meeting one: the approach. This session covers how the Children and Young People’s Engagement Team works, the opportunities available to the committee with examples from other committees of how it has worked
  • Meeting two: the need. Committee members are asked to consider and discuss
    • why children and young people’s voice is important to the committee (belief statement)
    • how voice could make a difference (thinking as a committee how they will use the voices they hear to inform and influence active decision making, rather than just being “useful to hear”
    • what topics would be the priority ones to collate views on (3 topics)
  • Meeting three: provides a first voice bank report from the RCPCH &Us network on one of the topics identified in meeting 2. At this stage the key is to support the committee to think about how best to understand the voice presented to inform a decision

The cycle then repeats until the committee and the children and young people’s engagement team are confident in how voice makes a difference to the committee. The next stage would then be to start developing opportunities for the committee to meet with and work directly with children, young people and families, either through committee meetings or external sessions.

By providing a framework of how to start the engagement processes, backed up by the dedicated staffing resource in the College and the publications already available, the process has become embedded in a number of committees.

Challenges and Learnings

One of the challenges has been creating the culture shift away from having lay representative on committees in a traditional sense, to a bespoke engagement proposal for each committee that builds voice and skills to work with voice across the committee. Some committees have taken time to understand the benefits of the new approach, whilst raising valid concerns that by not having the lay representative in the room at all times, opportunities are missed for them to inform “off voice bank topic”.

Another challenge is the timing between committee meetings as people move through the approach, with some committees only meeting 3 times a year (some even less!). There is a need to speak about engagement over a number of meetings in order to build in time for reflection, to support members to accumulate knowledge and to give time for the approach to be embedded. There is a clear challenge here if there is 6 months between meetings, with people dialling in rather than being in the room and with new attendees each time which can have an impact on learning and understanding.

There is a huge commitment to engagement across the committees which has been fantastic to see, which has meant that there is an openness and willingness to work in this way once it is understood.

Suggestions for further implementation

The theory, resources, insight and approach is fully replicable across College committees. The guidance sets out different approaches, reiterating that every committee needs the right approach for them rather than one way fits all. To replicate across further committees we are looking at how to support other College staff to lead meeting one and two inputs with the potential for a webinar to share with committee members. 

Once committees move into the next stage with direct face to face work between committee and service user, budget would need to be identified by the committee to support this.

To really extend the programme, the following would provide increased coverage across all committees and programme boards (in excess of 80 work streams)

  • Training for committee members in the theory of engagement with children and young people in strategic decision making
  • Support in setting aspirational and measurable engagement plans
  • A monitoring and impact framework to be developed in order support tracking engagement as it goes from emerging to established
  • Training for children, young people, families and committee members to develop patient and public voice roles for under 18s and their parent/carers, including auditing meeting styles and developing a new, fully inclusive and accessible meeting approach

Resources to link to:

Involving children, young people and voice in committees

Other QI submissions to link to:

Recipes for Engagement

Involving children and young people in specialised commissioning

Facing the Future: including children and young people’s voice in standards and guidelines (To be completed)

Mental Health &Us: a response from children and young people (To be completed)