This blog marks a full year of regular statistics and research rounds up relating to the lives of people with learning disabilities. In our very first post, we emphasised that improving the collection and dissemination of data is crucial for shedding light on the challenges faced by people with learning disabilities and for assessing progress towards creating more opportunities for them. Unfortunately, we begin this roundup by expressing disappointment: despite previous commitments and an extensive consultation process, the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill will not proceed in this parliamentary session. While the Scottish Government has reaffirmed its commitment to the Bill, the delay is a significant setback, postponing much-needed protections and support for neurodivergent individuals and those with learning disabilities and/or autism.
The Scottish Government now plan to refine the draft Bill provisions based on responses to the public consultation earlier this year. In a rare move, they have committed to publishing the updated provisions and will invite further feedback. In a letter to the Health, Social Care and Sport Committee, Maree Todd stated that despite this legislative interruption, priorities remain focused on expanding health checks, improving service access, addressing delayed discharges, and strengthening support for autism and neurodevelopmental pathways. However, data highlighted in this round-up reveals a persistent lack of progress in tackling delayed discharges. Additionally, recent reports indicate that health boards have faced significant challenges in offering and delivering annual health checks to adults with learning disabilities in Scotland. These were all meant to be offered by 31st March this year, but it would appear that many people with learning disabilities are yet to receive communication about their health check. This is something we will look into in more detail ahead of our next round-up.
Amid the recent setback regarding the LDAN Bill, the remainder of this blog will focus on the most recent statistics and data news related to people with learning disabilities, including the long-awaited Mental Health Inpatient Census 2023 and the first set of relevant data from Scotland’s Census 2022.
| Publication | Source | Date of release |
| Scottish Health Survey (SHeS): content review outcomes report | Scottish Government | 17th September 2024 |
| Closing the Disability Employment Gap in Scotland report | The Scottish Parliament, Economy and Fair Work Committee | 11th October 2024 |
| Mental Health Inpatient Census 2023 | Scottish Government | 5th November 2024 |
| Scotland’s Census 2022: Health, disability and unpaid care update for learning disability, learning difficulty or developmental disorder | National Records of Scotland | 21st November 2024 |
- Scottish Health Survey (SHeS): content review outcomes report published by Scottish Government – 17th September 2024
The Fraser of Allander Institute responded to the content review of the Scottish Health Survey (SHeS). The outcomes report from this review revealed strong support for maintaining general health and long-term condition questions. Notably, there will be an update to the list of long-term conditions to include specific categories for learning difficulties and neurodiverse conditions. While learning difficulties will now be recognised as a distinct category, learning disabilities will be grouped under the broader classification of neurodiverse conditions, which will also include autism, ADHD, and fetal alcohol syndrome. This aggregation is problematic, as it obscures the unique challenges faced by individuals with learning disabilities and risks overlooking their specific needs and perpetuating inequalities in access to services and support.
Although these changes are a positive step forward, the Scottish Health Survey is likely to remain limited in its ability to contribute to the learning disability evidence base in Scotland due to an ongoing lack of specific coverage in its findings. Greater clarity in data collection methods is essential to ensure that the specific needs of individuals with learning disabilities are adequately understood. This challenge extends beyond the Scottish Health Survey; it highlights a broader issue within data collection efforts across various sectors. Comprehensive and disaggregated data are crucial for informing policies and practices that effectively support individuals with learning disabilities and addressing the many challenges that they face.
- Closing the Disability Employment Gap in Scotland report published by The Scottish Parliament, Economy and Fair Work Committee – 11th October 2024
The Fraser of Allander Institute contributed to the parliamentary inquiry into the disability employment gap, including through a fellowship with the Scottish Parliament Information Centre (SPICe). This work found that the majority of the change in disability employment is due to a rise in disability prevalence, rather than any specific policy.
The final report from the Economy and Fair Work Committee emphasised the need for improved data collection concerning disability employment in Scotland. It highlights that current statistics often fail to disaggregate information about various disabilities, making it difficult to understand the unique barriers faced by different groups, particularly those with learning disabilities. Witnesses highlighted concerns about the conflation of disability and neurodivergence, complicating data analysis and resulting in generalised statistics that fail to capture the nuanced realities of individuals within these categories.
The report also calls for more strategic data gathering that goes beyond mere numbers. Witnesses, including Angela Matthews from the Business Disability Forum, stressed the importance of tracking specific employment barriers faced by individuals, advocating for longitudinal studies that explore what enables individuals to enter and remain in the workforce.
Overall, the Committee made 44 recommendations, this included noting:
“…the points made by witnesses on the lack of disaggregated data around employment outcomes for disabled and neurodiverse people, and (the Committee) shares the concerns raised by witnesses on the lack of data on the barriers faced, on learning disabilities, learning difficulties, neurodivergence, and individuals’ journeys.”
On the data reporting for employability services in Scotland, the Committee welcomed the introduction of the Shared Measurement Framework under No One Left Behind (NOLB). We have included summaries of the published quarterly statistics in our regular round-ups, and there has been a gradual increase in published information pertaining to individuals reporting a learning disability.
However, the current data is limited to individuals already engaged in the system, leaving significant gaps, particularly regarding those with unmet needs, such as individuals with learning disabilities. To address this, the Committee has called for enhanced data collection that includes insights from those not currently served by existing employability services to better inform resource allocation and ensure that policy/service developments are evidence-based.
- Mental Health Inpatient Census 2023 published by Scottish Government – 5th November 2024
Statistics from the 2023 Mental Health Inpatient Census have now finally been published. The Census itself was conducted on 12 April 2023 by NHS Board across Scotland and the results were originally due for publication in early 2024. A project undertaken this year to make improvements in internal coding for the Mental Health Inpatient Census revealed errors which meant there were some gaps in the data relating to inpatient beds in specific years for select health boards. Whilst the missing data was deemed minimal and didn’t affect overall trends or conclusions at the national level, it did influence some health board-level data. Consequently, the 2022 report was revised alongside the 2023 publication, contributing to the delayed release of 2023 statistics.
The number of mental health, addiction, and learning disability inpatients in NHS Scotland saw a slight increase from 2,959 in 2022 to 3,058 in 2023 (+3%). Although overall inpatient numbers are down from 2014, learning disability diagnoses remain prevalent, with this population consistently occupying a notable proportion of all available beds (around 6% in 2023). Of all adult inpatients on the Census date, 9% had a diagnosis related to a learning disability or autism. Specifically, 6% had a learning disability.
Figure 1. Occupancy rates by selected ward type, NHS Scotland, 2016 – 2023
Source: Scottish Government
Occupancy rates in psychiatric, addiction and learning disability wards rose to 89% in 2023 (+3 percentage points on previous year), showing high demand and limited bed availability across NHS Scotland, a factor potentially impacting timely care transitions. Forensic learning disability wards reported an average stay of nearly four years (1,434 days), and non-forensic learning disability wards had an average stay of over three years (1,217 days). Forensic services in a mental health context primarily provide care and management for individuals with mental health disorders who are also involved in the criminal justice system or pose a risk to others.
The 2023 Census reported 321 cases of delayed discharge, representing 11% of all patients with available data—a rise of one percentage point compared to the 2022 Census. The median length of these delays was slightly under three months (87 days), an increase of 19 days from the previous year. Among those experiencing delayed discharge, the most frequent diagnosis was dementia (29%), followed by learning disabilities or autism (21%).
Certain patients have care needs that can only be managed in a hospital setting and thus require long-term, complex clinical care, known as Hospital-Based Complex Clinical Care (HBCCC). Patients receiving HBCCC are not classified as delayed discharges. In 2023, 17% of those in mental health or learning disability beds were receiving HBCCC, a three percentage point rise from 2022. One third of these patients were treated in NHS Greater Glasgow & Clyde.
Overall, higher bed occupancy rates, extended patient stays in some specialised wards, and an increase in delayed discharges all point to the growing strain on resources, particularly for patients with complex needs and coexisting physical health conditions. Learning disability inpatients commonly had multiple physical health conditions. This emphasises the need for comprehensive physical health assessments, as 56% of all adult inpatients had a long-term physical condition.
This annual Census not only tracks changes in patient demographics and care needs but also highlights the pressing challenges facing mental health services in Scotland. The comprehensive scope of the data now available can serve as a foundation for targeted improvements in both mental and physical health services. It is a call for holistic approaches to inpatient care that address the entirety of patients’ needs, from clinical interventions to long-term planning for discharge and integration into community support systems.
We hope that the extensive quality assurance and data improvements applied to the 2023 Census will ensure the timely release of the 2024 statistics, scheduled for January 2025. Prompt access to this data is essential for shaping policies and enhancing service planning to meet the evolving needs of patients with learning disabilities in Scotland.
- Scotland’s Census 2022: Health, disability and unpaid care update for learning disability, learning difficulty or developmental disorder published by National Records of Scotland – 21st November 2024
The health, disability, and unpaid care data and report for Scotland’s Census 2022 were initially released on October 3, 2024. However, these outputs did not include information on learning disabilities, learning difficulties, or developmental disorders. At the time, the National Records of Scotland (NRS) explained that changes in how these conditions were represented on the 2022 census form required additional quality assurance work to be undertaken. In late October, the NRS announced that on November 21, 2024, they would publish a combined figure representing the total number of people who identified with one or more of these conditions in response to the long-term conditions question.
Figure 2. Scotland’s Census 2022 respondents with one or more of learning disability, learning difficulty or developmental disorder – percentage breakdown by sex and age
Source: National Records of Scotland
The 2022 Census data for the combined measure reveals that 280,751 individuals reported having one or more of the following: a learning disability, learning difficulty, or developmental disorder. This represents an increase in the percentage of people identifying with these conditions, increasing from 2.8% in 2011 to 5.2% in 2022. As illustrated in Figure 2, younger males were the demographic most likely to report one or more of these conditions.
The overall increase can be attributed in part to changes in how the conditions were presented on the census form. In the 2022 long-term health conditions question, descriptions were provided alongside each category, replacing the examples used in 2011. Notably, in the 2022 online version of the census, examples were only accessible through a drop-down menu that required users to click to view them. According to the National Records of Scotland (NRS), these adjustments generally worked well, reducing the number of write-in responses by half compared to 2011. However, the changes for the categories of learning disabilities, learning difficulties, and developmental disorders were described as “substantial,” raising concerns about the overall quality of this data.
As set out in the quality assurance report for the health, disability and unpaid care topic, NRS observed a notable increase in the number of respondents selecting more than one of these three conditions in 2022. This left them concerned that some respondents may have selected multiple boxes if they were unsure which category their condition fell under. At the Fraser of Allander Institute, we welcomed the inclusion of both descriptions and examples to guide respondents in completing the 2022 census. However, it now appears that the lack of both being readily available on the paper form, combined with the need to open a drop-down menu to view examples in the online version, may have limited accessibility to this information. This could have contributed to the challenges observed in the performance of this question and points to an improvement that needs to be considered as part of the cognitive and qualitative testing of questions for any future census exercises.
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 2011. Without further quantification or clarification, it’s difficult to fully assess this conclusion. However, as we and many others in the learning disability sector have long suggested, there is strong belief that previous population estimates for people with learning disabilities in Scotland have been significantly undercounted. Given this, if the question had performed as expected, with respondents being better informed through both descriptions and examples, we anticipated—indeed, hoped—that this would lead to a substantial increase, bringing the numbers closer to the true figure and addressing the long-standing issue of underreporting.
NRS set out their consideration of the Scottish Government’s pupil census as part of its quality assurance process. While this is a source we’ve explored in previous articles, it comes with its own limitations, particularly concerns about consistency in additional support needs reporting. The NRS quality assurance report notes, as we have previously highlighted, that the number of pupils identified as requiring additional support due to a learning disability has not increased since 2011. This stands out, as all other categories—such as specific learning difficulties, other moderate learning difficulties, and autistic spectrum disorder—have shown notable growth over the same period.
Although this discrepancy contrasts with the reported rise in learning disabilities in the 2022 Census, we think the pupil census data warrants further scrutiny. In fact, these issues may call into question its suitability as a source for triangulation. For instance, the decline in learning disability reporting in the pupil census raises important questions: Has there been a reclassification of cases into other categories due to inconsistencies or misunderstandings stemming from differing guidance (the pupil census uses different guidance than Scotland’s Census)? Could it be that certain needs are more frequently associated with additional support, potentially influencing how data is recorded? Moreover, by its very nature, the pupil census excludes adults, making it potentially unsuitable for extrapolating trends to the broader population.
NRS have confirmed that they are confident that the quality assurance process has validated the combined measure. While this measure offers valuable initial insights into the prevalence of learning disabilities, learning difficulties, and developmental disorders across Scotland, it adds limited depth to the existing evidence base on learning disabilities and offers minimal contribution to the improvement of policy development in this area. Additional analysis is now underway by NRS, and we are hopeful this will lead to the refinement and publication of disaggregated data, allowing these conditions to be distinguished. Given that this level of detail was available in the 2011 Census, relying solely on a combined estimate would represent a big step backwards.
That said, this should not cast doubt on the quality of the data itself. It may be beneficial for NRS to broaden their quality assurance process to include input from a wider range of experts in the field to further examine the learning disability estimate derived from the 2022 census. Additionally, providing more detailed information on the scale of the increase in reported learning disabilities would help support a clearer understanding of the data and its implications.
Authors
David is a Senior Knowledge Exchange Fellow at the Fraser of Allander Institute. Previously, he worked in a range of analytical positions across the public sector, primarily as a statistician.