A persistent and unacceptable gap

As Liz explains, the scale of the challenge is well documented nationally through the Learning from Lives and Deaths (LeDeR) programme, which examines the deaths of people with learning disabilities and seeks to understand why outcomes remain significantly worse than for the wider population.

One statistic stands out throughout the discussion: people with learning disabilities continue to experience a mortality gap of around 15 to 20 years compared with the wider population. For Liz, this is not simply a difficult policy problem, "I just morally and ethically cannot conceive of a mortality gap that is based on health access."

The conversation returns repeatedly to the idea that many of these outcomes are not inevitable. A substantial proportion of deaths remain avoidable, making the challenge not only one of health inequality but also of access, prevention and service design.

Using data to understand what drives inequality

Rather than relying on national averages, the Surrey Heartlands work sought to understand what was happening locally and which factors were associated with poorer outcomes.

The analysis looked at living circumstances, including whether people lived with family members, in supported accommodation or in residential care. It also examined geography, deprivation and access to healthcare services.

According to Liz, one of the most valuable aspects of the project was the ability to move beyond assumptions and identify specific issues that could be addressed.

The data already existed across multiple systems. The challenge was bringing it together, analysing it effectively and turning it into practical insight. As Liz reflects later in the conversation: "The data's there."

The discussion highlights an important lesson for systems seeking to address inequalities. The issue is often not a lack of information, but the ability to use that information to identify where intervention is most likely to make a difference.

Turning insight into action

One of the clearest examples discussed in the episode relates to annual health checks. The analysis highlighted variation in uptake and identified opportunities to improve access. This became a focus for subsequent improvement work across Surrey Heartlands.

The programme brought together GP practices, people with learning disabilities, carers and system partners to understand barriers and improve participation, and the results were significant.

Liz describes how annual health check completion rates increased to 82%, exceeding trajectory and representing a substantial improvement from previous levels.

Importantly, the work did not stop at increasing numbers - the team also explored people's experiences of annual health checks and found that quality mattered just as much as uptake. Some people reported poor experiences, particularly during and immediately after the pandemic when many appointments took place remotely.

As Liz notes, improving outcomes requires attention to both access and experience.

Co-designing solutions

The conversation also highlights the importance of working directly with people with learning disabilities when designing solutions.

One example was the introduction of the Medii App, an accessible digital tool co-designed with people with learning disabilities. The app helps individuals prepare for health appointments, record information and participate more actively in discussions about their care.

The idea emerged directly from conversations with young people who wanted a more accessible and engaging way to prepare for annual health checks and manage their health. Rather than assuming what people needed, the programme sought to involve them in shaping the response.

This approach became a recurring theme throughout the wider work, whether improving access to health checks, addressing obesity, supporting healthier lifestyles or improving engagement with services.

The Next 20 months: what other systems can learn

Towards the end of the discussion, Chris asks what other systems should take from the Surrey Heartlands experience. Liz's answer is straightforward: the data already exists, the tools are available, and there are practical examples that others can learn from.

What matters is bringing together analytical capability, clinical insight, operational leadership and lived experience to identify where inequalities exist and then acting on what the evidence shows.

For Liz, the ambition remains clear: "Let's get [preventable deaths] down to nought if we can for everybody."

The Next 20 is a celebration of 20 years of The PSC making public services brilliant. We're looking at lessons from the past, while also considering the biggest challenges in the next 20 months, and the biggest opportunities in the next 20 years. Explore our other episodes on your preferred podcast platform. 

And, if you want to know more about how we can support your organisation to analyse data to drive change, get in touch with Chris Bradley - we'd love to chat.