Fraser of Allander: Annual Health Checks for People with Learning Disabilities

As part of our ongoing work on the lives of people with learning disabilities, we continue to track the latest research, policy developments, and data shaping their experiences (writes Fraser of Allander Institute’s DAVID JACK).

In previous round-ups, we’ve explored topics ranging from employment and social care to education and healthcare access. For this edition, we turn our attention to the rollout of annual health checks for people with learning disabilities in Scotland.

What are Annual Health Checks?

An Annual Health Check is a yearly check-up offered to individuals with learning disabilities to help identify and manage their health needs. It typically includes a review of medical history, physical health measurements (such as weight and blood pressure), checks on long-term conditions, discussions about mental health and lifestyle, assessment of healthcare access difficulties, medication reviews, and the development of a health action plan if required. The goal is to detect potential health issues early and support overall well-being.

Why Annual Health Checks Matter

Annual health checks are seen as a vital tool in addressing health inequalities. Many people with learning disabilities face challenges in communicating their symptoms, making proactive health assessments essential. Research consistently highlights the poorer health outcomes this group experiences, including higher rates of undiagnosed conditions, preventable illnesses, and premature mortality.

Just this week, researchers at the University of Glasgow released new findings revealing that young adults (aged 25-34) with learning disabilities are nine times more likely to die from treatable causes than their peers in the general population. The study, led by the Scottish Learning Disabilities Observatory, underlined the severe health inequalities faced by this group—particularly young women, who were found to be at disproportionately higher risk of premature death from treatable conditions.

Scotland’s Commitment and the Reality of Implementation

In May 2022, the Scottish Government pledged to offer annual health checks to all adults (aged 16+) with learning disabilities by 31st March 2023. To support this, NHS Boards were allocated £2 million annually. However, implementation struggles led to a revised deadline of 31st March 2024.

The first official data on Scotland’s progress has now been released by the Scottish Government. The 2023/24 figures reveal that despite identifying 23,758 eligible individuals, only 1,405 (6%) health checks were offered, with just 1,128 completed. This means fewer than 5% of eligible individuals have received a health check—highlighting that the rollout remains far from comprehensive. Notably, while 80% of those offered a check went on to complete it, the vast majority of eligible adults have yet to be given the opportunity.

The failure to fully implement the annual health check programme points to deeper systemic challenges within Scotland’s healthcare system. While the Scottish Government has made reassurances that health checks remain a priority, the delay of the Learning Disabilities, Autism, and Neurodivergence (LDAN) Bill has raised concerns about long-term commitment.

In a letter to the Health, Social Care, and Sport Committee, Minister Maree Todd reaffirmed the Scottish Government’s dedication to expanding health checks, including exploring new settings such as the State Hospital and prisons. However, these recent figures suggest that rather than expanding, the programme is struggling at a foundational level. The challenge appears not to be a lack of policy ambition but a failure in execution, which risks slowing or even obstructing progress in reducing health inequalities in Scotland.

A Troubling Lack of Progress

While 2024 marks the first year of formal reporting, and some allowances can be made for scaling-up challenges, the level of delivery remains lower than expected, particularly given the dedicated £2 million in annual funding. The current data does not include a breakdown of uptake by NHS Board—an important detail that should be incorporated into future reporting. The next set of figures, due in June 2025, will be key in providing greater transparency on regional disparities, and we also encourage the publication of more detailed demographic data when appropriate.

Back in November 2024, media reports stated that none of Scotland’s NHS Boards had fully met the target of offering health checks to all eligible individuals. In some areas, such as NHS Lanarkshire and NHS Shetland, there were indications that not a single eligible patient had received a health check. Greater clarity on this is needed through more detailed official statistical reporting to ensure timely, accurate and transparent data on progress.

Encouraging NHS Boards to report on how they are utilising the allocated £2 million per annum could provide valuable insights and help address delivery challenges. Additionally, assessing the effectiveness of public awareness campaigns would help identify what has worked well and what could be improved to ensure that people with learning disabilities and their families are fully informed about their right to an annual health check.

Varied Approaches

The Scottish Government provided directives outlining the framework for annual health checks, while allowing flexibility in local implementation. This flexibility has resulted in varied delivery models across NHS Boards, reflecting differences in workforce capacity, healthcare structures, and local resources. Some Boards will conduct checks primarily through GP practices, while others may incorporate community-based assessments, specialist learning disability health teams, or partnerships with third-sector organisations.

For example, NHS Lothian recommended a model where Community Learning Disability Nurses work closely with GP practices. Other Boards are integrating health checks into community services or collaborating with third-sector organisations to improve outreach. However, these varied approaches risk creating inconsistencies in data recording, as different systems are likely being used.

The Scottish Government has emphasised the need for standardised data collection across all Health Boards. A uniform approach is essential for assessing the effectiveness of health checks and ensuring equitable service delivery. The Annual Health Checks National Implementation Group aims to assist NHS Boards in aligning practices and reporting methods, with members expected to share real-time delivery data to collaboratively address challenges, overcome barriers, and provide peer support.

Beyond the Census: How Health Checks Could Bridge the Data Gap

If Scotland’s annual health checks for individuals with learning disabilities had been fully implemented as intended, they could have provided a valuable and reliable dataset on the number of people with learning disabilities in the country. Interestingly, the number of adults (23,758) identified through the Annual Health Check Survey Return to the Scottish Government already exceeds the number of adults reporting a learning disability in Scotland’s 2011 Census (21,115) by 12.5%.

This first set of published data for the Annual Health Check Survey states, “The method by which eligible people are identified varies by Health Board – the numbers identified only represent people with learning disabilities who are known to services.” Coupled with the fact that these checks are not yet being delivered at full capacity, this suggests that the true number of adults with learning disabilities in Scotland is likely to be higher than 23,758.

Scotland’s 2022 Census faced significant challenges in identifying the learning disability population. Instead of reporting learning disabilities separately, the published data currently combines them with learning difficulties and developmental disorder—a disappointing step backward compared to 2011.

The National Records of Scotland (NRS) identified learning disability as the primary category of concern, noting an “unrealistically large increase” in the number of people selecting this category compared to the previous census. As we previously explained, quality assurance efforts primarily relied on triangulating data with Scotland’s Pupil Census, which only captures those in school education and does not account for the broader adult population.

A fully functioning health check system could have served as an essential alternative data source, refining population estimates, improving census accuracy, and informing future data collection. Crucially, it could have also helped assess discrepancies in reported numbers—and given the challenges with learning disability recording in the 2022 Census, it still could—helping to clarify the scale of potential misrepresentation and ensuring that individuals with learning disabilities are properly represented in National Statistics and policy planning.

Policy Changes in England: A Warning for Scotland?

Recent developments in England signal changes to the NHS’s approach to annual health checks for individuals with learning disabilities. In an effort to prioritise reducing waiting times, Health Secretary Wes Streeting has announced a reduction in the number of NHS targets from 32 to 18.

This streamlining includes the removal of the specific target to provide annual health checks to 75% of people with learning disabilities across England. It is worth noting that unlike England’s previous approach, Scotland’s current policy is to offer a health check to all eligible individuals, without a set percentage target for delivery.

The Health Secretary’s recent decision has raised concerns that removing these targets could also lead to the loss of ring-fenced funding in England. Historically, funding has been directly tied to national targets to support their delivery, and without this financial safeguard, there is a risk that annual health checks could be deprioritised.

Mencap has warned that removing this target could have “deadly consequences,” as people with learning disabilities already face a life expectancy up to 23 years shorter than the general population.

While healthcare policy in Scotland is devolved, pressures on workforce capacity and financial resources remain significant challenges. If services continue to be overstretched, there is a risk that learning disability healthcare may receive less focus. This could make it more difficult to address health inequalities, potentially leaving those already at high risk of poor health outcomes further marginalised.

Conclusion: Turning Commitment into Action

The rollout of annual health checks for people with learning disabilities in Scotland remains a work in progress, with ongoing challenges still to be addressed. Despite the Scottish Government’s assurances that expanding access remains a priority, the reality is that progress has been slow, and only a small percentage of eligible individuals have received a health check so far.

Beyond improving individual health outcomes, a fully implemented programme could play a crucial role in shaping policy by providing more accurate data on Scotland’s learning disability population—particularly given the shortcomings of the 2022 Census.

As concerns over widening health inequalities grow and policy shifts in England raise further questions about long-term commitments, Scotland must ensure that these health checks move beyond ambition and become a fully embedded, effective service.