Creating a shared National Vision for Children and Young People with a Learning Disability in Wales
By Rebecca Curtis, Senior Improvement Manager, Learning Disability team
The Health Service Journal (HSJ) Patient Safety Congress and Awards take place in Manchester on 16 September 2024 and Improvement Cymru has won three of the 10 categories in the poster competition.
As an organisation, we’re very proud to feature not once but three times in a very competitive field of teams who drive improvements in culture and quality across the whole of the UK.
As an advocate for those with learning disabilities, I’m delighted to profile our work in creating a shared National Vision for Children and Young People with a Learning Disability in Wales and win in the ‘Working with vulnerable patients’ category.
Being celebrated by our peers during the most testing of times for the NHS is a testament to our collective commitment to every corner of the care landscape, especially with and for the most vulnerable in our communities.
The challenges, collaboration, and context we faced
The variation in access to healthcare services for children and young people with a learning disability across Wales presents many problems. Improving the long-term wellbeing and health of current and future generations must meet challenges in expertise, multi-disciplinary support, multi-agency collaboration, and workforce configuration. None of these barriers can be overcome in isolation.
We know we need a whole-system outlook to have a truly shared national vision. That’s why our journey started with the Learning Disability Strategic Action Plan (2022-2026). The plan aims to bring together health, social care, and education to create a comprehensive, integrated, Wales-wide approach to provide equitable access to services, empowering children and young people with a learning disability to reach their full potential.
This context was crucial in shaping our approach.
Our strategy, tactics, and tangible results
To develop the vision it was important to engage a diverse range of stakeholders because it helps to manage the gap from policy to practical application. Our method was underpinned by the principles set out by the James Lind Alliance Priority Setting Partnerships (PSPs), which ensured full stakeholder representation and made sure to place a particular emphasis on insights from lived experiences.
Through this method, we empowered children, young people, health and social care professionals, schools, and carers and families to participate. They all contributed to developing a collective vision, identified key priority areas and co-produced a set of care principles. These were the key elements to form a ‘National Vision’ for all services to support longer term sustainable change.
Our engagement activities took place over 18 months. Through a range of touchpoints – including surveys, listening events, workshops and more – we asked three simple questions:
- What is good?
- What is bad?
- What needs to change?
The simplicity of our approach helped our discussions to meet the diverse needs of our audience and our stakeholders were all supported to tell us what matters most to them. A National Vision and Action plan was developed to support future policy and the design and delivery of services.
In addition to our main aim, we also realised several more results through our enhanced community engagement:
- Membership of the community of practice for children and young people matured and grew.
- Relationships were strengthened between sectors, particularly between health and education.
- Parents reported they felt ‘listened to’ and liked that there was a direct feedback loop to the Learning Disability Ministerial Advisory Group (LDMAG) to help shape policy.
- Parents and carers helped to develop an online collaboration tool, to share resources and content.
The lessons we learned and our next steps
In the true spirit of co-production, service users were empowered to take ownership and contribute to discussions about how we can support sustainable and meaningful change through collective action. There is, however, more we can do.
Future considerations should focus more on the process of incorporating feedback from children and young people with profound and multiple learning disabilities. Their experiences and challenges are often unique, and so are those faced by different ethnic groups.
Language may be ever evolving but the principle of accessibility should always remain a priority. It’s essential to make language as accessible as possible. Strategies like easy read, core boards and other communication aids made it possible to access a wider audience.
The national vision should never stand still. We know there’s lots of work to do for the vision to continually benefit future generations, and there are significant activities to action with our stakeholders:
- Establish feedback loops for continuous learning and improvement.
- Identify meaningful outcome measures for ongoing monitoring.
- Ensure safe data sharing to inform and enhance service design and delivery at local, regional, and national levels.
Say hello at the HSJ Patient Safety Congress and Awards!
We’re really looking forward to attending the HSJ Patient Safety Congress and Awards. Not only is it a chance to network with other teams and projects making their own improvements to the system, but we can also share knowledge with these inspiring leaders to expand our ideas and the impact we make. These are the types of discussions that can influence change and positively impact healthcare, and we’re keen to take full advantage.
I’m giving a 10-minute lightning talk in the Innovation Spotlight Theatre in the Exhibition Hall and I’d be really pleased to share our work with as many of you as possible, so please come along whether you’re from a clinical or non-clinical background. You can find the full programme on the HSJ Patient Safety Congress website.
To find out more about the work of Improvement Cymru’s Learning Disability programme, you can also visit our website.