The Initial Problem and its Impact

NHS England identified a need for improving practice and processes for involving children and young people in specialised commissioning across England. The impact on patients is that their needs are not known or met at the top level of a specialised commissioning process, which takes place on a regional or cross regional basis many steps removed from the clinical treatment location of the child or young person.

NHS England has established Clinical Reference Groups that oversees the development of specifications. These include specialised services such as specialised surgery in children, paediatric medicine as well as having the child and youth population covered by all age groups including cancer and mental health amongst others.  Each Clinical Reference Group includes clinical leads alongside patient and public voice members, but it was acknowledged that these forums were not readily accessible for children and young people to attend, participate and be involved in, so a piece of work was commissioned to identify and map the different approaches that could be taken.

Causes of the Problem

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

• Clinical reference groups (CRGs) cover specialist areas where children and young people have the most complex needs or conditions, with in turn means that it might not be possible for them to travel cross country to meetings as a patient and public voice representative.
• For CRGs working across paediatric and adult services, the patient and public voice representative might be from an adult perspective, reducing reach across the wide age range.
• CRGs deal with incredibly complex concepts in a formal meeting structure that may not meet the needs of children or young people in terms of accessible information, meeting structure and style, timings of meetings so as not to coincide with school or college. This creates a number of barriers to their engagement.

Aim

To develop with children, young people and CRG members, a resource for CRGs to support and develop approaches for children and young people’s voice to inform and influence specialised commissioning

Output

A guidance document that references the need to involve, advice on how to involve and experiences of involvement / opportunities for involvement across the CRG network

Outcomes

• a CRG structure that is knowledgeable, confident and able to actively and meaningfully involve service users (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 Engagement Coordinator (freelance)
  • Alder Hey Children and Young People’s Forum

Stakeholders included:

• Children, young people and families – there were three distinct elements of involvement for this stakeholder group;
  • Young advisors from Alder Hey: Trained as part of the project to conduct peer consultation with patients on the wards, to review responses from across England and to develop checklists, resources and guidance with the RCPCH team
  • Young patients and their families in specialised services: Involved in outreach sessions sharing their views on how best to involve children and young people who have complex medical needs in commissioning decision making
  • CRG: patient and public voice member (young adults) shared their suggestions, ideas and experiences of being involved in CRG meetings, highlighting opportunities and potential challenges for involvement
• CRG committee members and commissioners: Shared suggestions, ideas and experiences of being involved in CRG processes, highlighting opportunities and potential challenges for involvement.
• NHS England patient experience team: As commissioners of the guidance they provided information, advice and peer review on the guidance as it took shape.

PDSA Cycles / Solution(s) Tested

Plan:

• Identification of the challenge
• Desk based research into available resources, relevant theoretical explorations of involvement in specialist decision making
• Sessions with Alder Hey Children and Young People’s Forum to refine the challenge

Do:

• Outreach in specialised commissioning sessions
• RCPCH &Us roadshows with children and young people
• Training & project sessions with Alder Hey Children and Young People’s Forum in peer consultation, leading to them running their own outreach sessions

Study:

• Guidance drafting, consultation with stakeholders
• Guidance review with Alder Hey Children and Young People’s Forum
• Response from stakeholder engagement to widen the practical resources, including case studies, more downloadable materials

Act:

• Publication of the Guidance and associated materials

Data Results

Output

• full guidance document
• involvement 101 spark
• executive summary document
• resources booklet including all the checklists
• case studies document highlighting examples of practice

How This Improvement Will Be Sustained

It was envisaged that all CRGs would be provided with a hard and e-copy of the guidance and associated materials for their exploration in CRG meetings for each specialist area. This was not able to be monitored and evaluated as wasn’t part of the original funding specification for the work.

A clear message from those involved was that there needed to be a dedicated central resource that could support and develop engagement approaches post guidance launch to build and embed the learning. Unfortunately no additional resource was provided at the time of publication, with a number of CRGs not feeling that they had the skills or experience in their group to pick up the engagement work without further resource.

Challenges and Learnings

Whilst well-received at launch by the CRGs and the wider sector, there was no implementation plan at the time of publication. Due to changes in the commissioning team and a restructure of the CRGs, the programme was in a transformation process which also meant that there were gaps in awareness of this piece of work.

Delivering a piece of guidance as a standalone doesn’t create lasting influence or impact consistently. For CRGs that had existing involvement experience for children and young people, patient and public voice members with access to young patients and established resource then the guidance provided a reassuring resource for their already existing work. For those with emerging practice, there was no next steps plan as to who would support them to develop an engagement approach, largely due to the parameters of the commissioning specification.

Suggestions For Further Implementation

The theory, resources, insight and approach is fully replicable to all areas where children and young people with medical conditions are to be involved in decision making. The learning from the specialised commissioning context is fully transferable to other top level decision making structures or needs. This guidance can then be used to help develop approaches in any context.

In relation to specialised commissioning and the CRG structure, additional funding needs to be identified to deliver an implementation plan including:

• Training for CRG members in engagement with children and young people in strategic decision making
• Support in setting aspirational and measurable engagement plans
• Resource to enable child and youth centred voice programmes that are flexible and adaptable to meet the engagement needs of young patients with complex health needs
• A monitoring and impact framework to be developed in order support tracking engagement as it goes from emerging to established
• Training for children and young people and CRG members to develop patient and public voice roles for under 18s, including auditing meeting styles and developing a new, fully inclusive and accessible approach

Find out more at RCPCH

Project Lead: Emma Sparrow

Organisation: RCPCH, Children and Young People’s Engagement Team

Published: May 2019