June 2024 Round up – Latest research and data news concerning the lives of people with Learning Disabilities

With the public consultation period for the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill now over and we await the Scottish Government (SG) to publish its findings at some point over the summer (we assume post general election), it provides us with another opportunity to blog about the latest research and data news concerning the lives of people with learning disabilities in Scotland.

Another key date which has now passed, is the direction from the Scottish Government to Health Boards to have offered the first of new annual health checks to those aged 16 and over with a learning disability in Scotland by 31 March 2024. We look forward to commenting on the data collated and published on these checks in the near future. Meantime this round up will cover the following releases:

Publication Source Date of release
Health and Social Care – Data Strategy: 2024 Update – Our progress and priorities Scottish Government 16th April 2024
Scotland’s Devolved Employment Services: Statistical Summary for October to December 2023 Scottish Government 1st May 2024
Understanding the data: A review of Scotland’s statistics. Are disabled children visible in Scotland’s children’s statistics? CELCIS 8th May 2024
Insights into Learning Disabilities and Complex needs: Statistics for Scotland Public Health Scotland 28th May 2024

There was also an intention to cover the Mental Health Inpatient Census, 2023 in this blog but the release has been pushed back once again and is now expected to be published on the 27th August 2024. The Mental Health Inpatient Census collects data on patients in mental health, addiction and learning disability beds who are funded by NHS Scotland at a point in time, together with patients receiving Hospital Based Complex Clinical Care (HBCCC). We understand that the reason for the delay is due to ongoing data quality concerns. The last results for 2022 were published back in December 2022, where in the lead up to publication it was discovered that a small number of health boards had provided incomplete data, and that an investigation would be required to identify whether similar issues had occurred in previous years’ data collections and publications.

A couple of further recent publications which are also worth a mention but unfortunately because they fall short of contributing to the learning disability evidence, are the People Requiring a Social Care Assessment & Care at Home Services Statistical Report and the Health and Care Experience Survey, 2023/24. The former is a monthly publication by Public Health Scotland (PHS) which is based on weekly counts, with no additional information collected and no means to link to other data due to the aggregated nature of the collection. This is an example of where there is a potential opportunity to achieve more through an existing data collection but the trade-off between timeliness and data richness, is clearly a restricting factor. The added value of collecting this data either at a more disaggregated level or with the ability to be onwardly linked, could include gaining a better understanding of how many people with a learning disability are waiting on a social work assessment to enable them to live independently. The other key metric from this publication would also tell us more about the number of people who have a learning disability and have been assessed ahead of waiting for a care at home package.

The Health and Care Experience survey is the successor to the GP and Local NHS Services Patient Experience Survey and has been run every two years since 2009. It asks people about their experience of using general practice, out of hours services and aspects of care and support provided by local healthcare services, including help with everyday living and care responsibilities. The survey uses a random sample of people registered with a general practice in Scotland, achieving a 20% response rate (~107,000 people) for 2023/24. With this level of response rate and the accessibility challenges which surveys can pose for some people with learning disabilities, we understand that it probably wouldn’t be practical nor possible, to publish the results of such a national sample survey, disaggregated specifically to the level of people with learning disabilities.

However, like all data collections, it is important that the views of those with learning disabilities are appropriately captured and presented. The health and care experiences of those with learning disabilities in Scotland needs to become a much more regular and prominent part of the evidence base. As stated in the LDAN Bill consultation, the SG have funded the Scottish Learning Disability Observatory (SLDO) to undertake research with the Scottish Primary Care Information Resource (SPIRE) and PHS to use the data collected as part of the new annual health checks to identify how many people with learning disabilities are registered with GPs. Once this information has been established, it should offer a vehicle to develop appropriate mechanisms to capture vital data from people with learning disabilities in Scotland. This would include their experience of health and care services, which at present fails to be illuminated through existing publications.

  • Health and Social Care – Data Strategy: 2024 Update – Our progress and priorities published by Scottish Government – 16th April 2024

Since the publication of Scotland’s first Data Strategy for Health and Social Care was released back in February 2023, we have been monitoring how this could enhance and support the lives of people with learning disabilities. Of particular interest has been the plans to establish a Digital Front Door to allow people to digitally interact with their health and social care data. We’ve also had a watchful eye on the development of an Integrated Social Care and Health Record. This is seen as a means of improving access to data for both the public and professionals.

In our last round-up we covered the Audit Scotland’s annual report to the NHS in Scotland, where it highlighted that uncertainty around the availability of funding could raise questions over the delivery of such programmes. The Health and Social Care Data strategy released in February 2023, originally stated an aim to launch the Digital Front Door in late 2023. This hasn’t happened and the strategy progress update published by the Scottish Government in April, outlines that a prototype will be developed to test the Digital Front Door in 2024-25. This will be in advance of the revised delivery of a beta release to members of the public by November 2025.

The Digital Front Door programme of work is seen as one which is laying foundations on which other deliverables of the strategy are dependent. The Integrated Social Care and Health Record is one such deliverable, as the platform for accessing this for the public with be through the Digital Front Door. The progress update states that members of the public will have the ability to contribute to their Integrated Record, where it is appropriate to do so, to allow delivery of person-centred care. This capability will be particularly important for people with learning disabilities. There is no target date given for delivery of the integrated record, with the progress update outlining that a gradual “component-based” approach will be followed.

Other notable updates from the progress report include continued efforts to develop a Primary Care Data and Intelligence Platform that aims to provide a single, integrated analytical capability for General Practice data across Scotland. This should contribute to unlocking controlled access to GP data and enable more in-depth and novel research to be undertaken. We will also continue to track the development of a near time data for insight service which aims to go live in the winter. This will test out Seer 2 across health and social care. Seer 2 being a platform that went live at the end of 2023 which provides national technology and infrastructure capabilities for data management and analytics for health and social care in Scotland.

We have previously recommended exploring opportunities to undertake more routine data linkage to enhance the learning disability evidence base in Scotland. The new Community Health Index (CHI) System went live in October 2023. The strategy progress update indicates that COSLA and COSLA’s Digital Office are now exploring the benefits and risks of using CHI in Local Government to support social work and social care. One potential benefit under consideration is how this could assist Councils to link data and facilitate improved data quality.

  • Scotland’s Devolved Employment Services: Statistical Summary for October to December 2023 published by Scottish Government – 1st May 2024

As reported in our last round-up, the July to September 2023 Statistical Summary of Scotland’s Devolved Employment Services was the first time that data on long-term health conditions (LTHCs) was reported for No One Left Behind (NOLB) participants. The statistics showed that since this data started being collected up to the end of September 2023, 8,607 NOLB participants had reported a long-term health condition. This latest quarterly release reports that overall, 11,403 people have reported a LTHC up to the end of December 2023. This equates to an overall increase of 2,796 participants (+32.5%) since the previous estimate was reported. The most recent data also states that 1,674 participants reported a LTHC specifically within the most recent quarter (October to December 2023), this equals 38% of all NOLB participants currently recorded over this time period.

The profile of reported participant conditions over October to December 2023 was similar to last quarter. Of all NOLB participants within this time period, a mental health condition was the most common reported LTHC (23%), followed by 10% of participants who reported a long-term illness. The percentage reporting a learning disability has been revised and updated for last quarter from 5% to 6%, and currently sits at 5% for the period October to December 2023.

As previously stated, we await the first release of progression and outcome data by LTHC for NOLB participants. This is something that we will continue to pursue and feedback to the Scottish Government, including through the recent user survey (open until 10th July 2024) which they have launched to capture views on their NOLB employability statistics. We will only be able to truly assess how successful the NOLB approach to employability delivery has been in supporting people with learning disabilities to find, stay and progress in sustainable work, once the progression and outcome by LTHC data starts to be made available.

  • Understanding the data: A review of Scotland’s statistics. Are disabled children visible in Scotland’s children’s statistics? published by CELCIS – 8th May 2024

CELCIS, the Centre for Excellence for Children’s Care and Protection, based at the University of Strathclyde, recently published a new analysis to help better understand what is known about disabled children across Scotland’s statistical collections.

Similar to the work we’ve previously undertaken which looked at the learning disability data landscape, this piece considered sources both within Scotland and beyond. At a high level, many of the conclusions made throughout this CELCIS report feel familiar and chime with what we’ve previously recommended as important steps for continually improving the learning disability evidence base in Scotland. For instance, the CELCIS analysis reinforces a need to ensure data collection guidance is current and consistent, especially when it comes to key definitions.

This is supported by a helpful mapping exercise which CELCIS have carried out. It covers the disability categories used across children’s statistical collections in Scotland and the results are summarised in the report. The analysis highlights many disparities including with ‘Learning/Understanding/ Concentrating’ and ‘Social or behavioural’ categories. Inconsistent disaggregation and the separation of learning disability and learning difficulty in some data collections and not others, is highlighted through this mapping.

CELCIS encourage the Scottish Government to test refreshed guidance and to ensure there are a range of feedback loops including with social workers and data professionals, especially to support validation at a local level. The report states that question development within data collections should be done collaboratively with stakeholders who have expert knowledge of different disabilities. We would expect learning disability stakeholders to play a valuable role in this process.

Whilst the CELCIS conclusions acknowledge that collecting disabled children’s statistical data is not an easy task and that change could take a bit of time due to the range of relevant statistical publications in Scotland, it also explains how important it is for disabled children to be visible across these data collections. This is because disabled children are at increased risk of harm and abuse. As we previously stated, in order for change to be realised, people with learning disabilities must be invisible no more and as you would expect, the same message holds for disabled children. Collecting robust, high-quality data is fundamental to understanding more about their risks and experiences, whilst helping to ensure the rights and needs of these groups are met.

A further common theme from this report and work previously undertaken by the Fraser of Allander Institute on ways to improve data relating to the lives of people with learning disabilities in Scotland, is what could be achieved through more routine data linkage. CELCIS outline the potential which could be realised and recommend undertaking an initial linkage exercise to provide further understanding of the variations in how disabled children are recorded across systems used by multi-agency partners. They feel that this would support conversations around improving data sharing which is vital for ensuring children’s support needs are captured and met.

  • Insights into Learning Disabilities and Complex needs: Statistics for Scotland published by Public Health Scotland – 28th May 2024

This is now the second publication of this statistics report by Public Health Scotland. We covered the first in our November 2023 round-up, where we explained that this new statistical reporting comes on the back of the Scottish Government’s Coming Home Implementation report from February 2022. This included a recommendation which saw the Dynamic Support Register (DSR) launched in May 2023. The aim of which is to improve the visibility of people with learning disabilities and complex care needs, at a local and national level, to support work to monitor those who are in hospital, in out-of-area placements and where current support arrangements are at risk of breaking down. With those three scenarios described as “urgent” within the DSR categorisation.

The register is applicable for adults with learning disabilities and complex care needs whose support is funded by a Scottish Local Authority or Health Board, with the data collected from the 31 Health and Social Care Partnerships (HSCPs) in Scotland. PHS now collate and release this information quarterly with the latest statistics looking at the period 28th December 2023 to 28 March 2024 (referred to as census points in the report). As we stated previously, the register is still likely to be at different stages of implementation at a local level and the needs locally may differ for each partnership. PHS have therefore advised to exercise a degree of caution when making comparisons over time or between partnerships.

Table 1: Number of adults (18+) recorded on the Dynamic Support Register (DSR) in Scotland, between 28 September 2023 and 28 March 2024

DSR category Number of people as at 28 September 2023 Number of people as at 28 December 2023 Number of people as at 28 March 2024
In Hospital (Urgent) 171 (DD = 86) 193 (DD = 89) 192 (DD = 83)
Inappropriately Out-of-Area (Urgent) 130 108 75
At Risk of Support Breakdown (Urgent) 154 199 222
Enhanced Monitoring 144 182 175
Appropriate Out-of-Area 644 716 799
Scotland 1,243 1,398 1,463

DD = Classified as Delayed Discharge

Source: Public Health Scotland

The latest statistics indicate that the number of adults (18+) in Scotland recorded on the DSR has increased each census point and by 18% overall but as outlined above this is likely to reflect the developmental nature of local registers at this early stage. As table 1 shows, there have been increases overtime across three of the five DSR categories, with enhanced monitoring only falling slightly between the December 2023 and March 2024 census points. The report states that the fall in those people recorded as Inappropriately Out-of-Area compared to the previous census points could be down to several factors, with two likely reasons being either HSCPs review and interpretation of guidance and/or people transitioning to more appropriate Out-of-Area settings.

The number of people recorded against the three categories deemed “urgent” increased to 500 in December 2023 (+10% on September 2023) before falling slightly to 489 in March 2024, mainly due to the drop in those recorded as Inappropriately Out-of-Area. Whilst this is only the second publication of these statistics, the number of adults recorded as being in hospital-based assessment and treatment is already coming through as a clear concern. This is especially the case since of the 192 people in hospital as at March 2024, 83 (or 43%) were classified as a delayed discharge. In fact, the delayed discharge classification relating to the set of data for the first census point (28 September 2023) was as high as 50%. To provide some degree of context, we know from the annual summary of delayed discharges in NHSScotland that in the financial year ending 31 March 2023, there were 18,157 discharges overall from hospital following a period of delay accounting for 3% of adult inpatient discharges (541,747).

The establishment of the DSR means that data on delayed discharges for people with learning disabilities is now collected and published on a routine basis, something which was previously absent.  Whilst we need to continue to monitor future data to understand whether genuine progress is being made with inappropriate out-of-area placements and the reasons behind the apparent upward trend in current support arrangements being at risk of breaking down category; the statistics from these first two releases have unquestionably highlighted the scale and urgency of the challenge to reduce inappropriate hospital stays for people with learning disabilities and complex care needs in Scotland.


David Jack is a Statistician on a part-time secondment from Research Data Scotland.