A fairer future | Improving health and care for people with a learning disability in Wales

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By Dr Rachel Ann Jones Visiting Professor, National Programme Lead

The biggest privilege I have in my day-to-day role is being able to help improve outcomes for people with a learning disability, their families, and their loved ones.

The population we serve is among the most vulnerable and marginalised in society. This has always been at the forefront of my mind over the past six years as National Lead for our Learning Disability Programme.

Now, as we enter a new phase as a programme, it has given me a chance to reflect on how far we’ve come since 2019 and set out our vision for the future.

Progress with purpose

Our programme has provided advice, support, and resources to colleagues throughout the NHS in Wales and beyond. We’ve been taken in many different directions in our efforts to improve patient safety and reduce both avoidable harm and deaths, which is testament to the amount of work that has been needed.

Throughout all of it, improving health experiences and outcomes for people with a learning disability has been our priority purpose. I’m so proud to see the meaningful difference the programme has made:

  • Co-produced and delivered education and patient safety solutions nationally.
  • Evidence-based decision making with new approaches to data and analysis.
  • Strategic leadership with local, regional, national and international partners.
  • Supported raising standards for care services across the system.

You can find more detail about what we have achieved on our website (Our progress | 2019-2025).

What’s evident when we sit back and reflect is that a strategic solution for quality and safety certainly isn’t one-dimensional. We must take many steps, both small and big, to achieve a fairer Wales for all.

This goal simply isn’t achievable overnight but over time, real accumulative improvements can happen through informed and intentional action.

Lessons we learned

Naturally, it’s nice to celebrate our successes, but acknowledging our challenges strengthens the next steps we take. There have been many lessons on our journey, which is to be expected as the first national programme of our kind in Wales.

The past few years have brought some big changes to the system. One of the most significant is that Improvement Cymru is now part of the Quality, Safety, and Improvement Directorate within the NHS Wales Executive. From our position, this shift highlights the growing need for stronger strategic direction and governance – something reflected in the National Clinical Framework, Duty of Quality Statutory Guidance, and updated Health and Care Quality Standards. We believe alignment in these areas will have a direct benefit for quality, safety and improvement in patient care. 

Another key takeaway for us is that small-scale, short-term improvement projects aren’t sufficient to tackle the deep-rooted health disparities faced by people with a learning disability in Wales. Thanks to time-limited funding, we’ve been able to launch an innovative programme dedicated to improving health outcomes for this community. Led by experts in both learning disability and improvement, the programme has already made a meaningful impact. But, its long-term goals, like reducing avoidable and premature deaths, require a much broader, forward-thinking strategy.

We know we’ve come a long way, and we know we have further to go because our population continues to face health inequalities every day. We all have a responsibility to address this.

Accelerating improvements: The year ahead

With our renewed remit for the next 12 months, we’re focusing on four key areas that will accelerate health improvements for people with a learning disability:

  • Enhanced data and specific standards – We’re working to develop more robust data collection and specific national standards to drive better decision-making and service improvements.
  • Health Checks – We’ll work to ensure people with a learning disability receive effective, timely health checks that lead to better health outcomes.
  • Reducing length of stay – We’re addressing the factors that contribute to extended hospital stays for people with a learning disability and supporting timely, appropriate discharge.
  • Reducing Restrictive Practice – Continuing our work to promote positive and person-centred approaches, reducing the use of restrictive practices wherever possible.

This targeted approach reflects Ministerial priorities and allows us to concentrate our efforts where they will have the most impact.

A call to action

The next 12 months will be pivotal as we work closely with Welsh Government to shape the future direction. We will continue our work to make a meaningful difference to the systemic issues across the system and to promote the importance of person-centred services.

In the current climate, it’s more important than ever to make the most of available resources and ensure our work delivers measurable change. We can’t do this alone. We need the continued engagement of all our stakeholders; policymakers, NHS leaders, professionals in health and social care, the third sector, and people with lived experience. We will always value your voice.

Thank you to everyone who has supported us so far. We look forward to progressing our plans for our new national network and encourage you to sign up to be a subscriber. Your commitment has been instrumental in our successes, and together, we can continue to build a Wales where people with learning disabilities are valued, empowered, and supported to thrive.