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

As the Scottish Government acknowledge in the Learning Disabilities Autism and Neurodivergence (LDAN) Bill consultation, current data limitations can “restrict evidence-based policy making and planning”. This is a view we have stated many times during our programmes of work looking at the lives of people with learning disabilities. We recently released a short video resource which covers some of the implications of the proposals set out in the overarching data theme of the LDAN Bill consultation. There is still time to submit your consultation response ahead of the 21st April 2024 closing date.

We have also recently published a new report which includes findings from speaking to seven employers with experience of hiring people with learning disabilities. The research summarises what they told us works for each employer and reflects on the common challenges that they face. Our next piece of work will involve employers who haven’t yet hired people with learning disabilities to better understand perceived barriers for employers.

In terms of the work of others, we have introduced regular blogs, like this one, to shine a light on what data is made available, what it tells us and where it falls short. We are keen to highlight improvement activity which may be underway, as well as suggest where we feel such endeavours should be prioritised.

In this round up, we comment on the following releases:

Publication Source Date of release/launch
Learning Disability Inpatient Activity, Financial Years 1997/98 – 2022/23 Public Health Scotland 30th January 2024
Scotland’s Devolved Employment Services: Statistical Summary for July to September 2023 Scottish Government 7th February 2024
NHS in Scotland 2023 Audit Scotland 22nd February 2024
Insights in Social Care: Statistics for Scotland, People supported through Social Care Services 2022/23 Public Health Scotland 12th March 2024
Research report: Preventing people with a learning disability from dying too young Nuffield Trust 13th March 2024
Summary Statistics for Schools in Scotland Supplementary Statistics 2023 Scottish Government 19th March 2024
  • Learning Disability Inpatient Activity, Financial Years 1997/98 – 2022/23 published by Public Health Scotland – 30th January 2024

This annual statistical release covers long-term trend information on patients who have been cared for as inpatients or day cases in Learning Disability specialty beds in Scottish mental health (psychiatric) hospitals. A standalone publication since 2019, this release comes with accompanying open data.

Figure 1. Inpatients and patients discharged from the Learning Disability specialty in Scotland, 1997/98 – 2022/23

Source: Public Health Scotland

The data is sourced through the Scottish Morbidity Record (SMR) 04 (mental health) returns for admission to and discharges from NHS hospitals in Scotland and the latest report includes information up to 31 March 2023. The most recent data shows that patient discharges have increased slightly over the last couple of years (from 324 in 2020/21 to 511 in 2022/23). The report suggests that increases in recent years may represent a return to anticipated activity levels following relaxation of measures in response to the COVID-19 pandemic.

Previous to this, discharges for patients with a learning disability fell considerably from 4,700 in 1997-98 to 1,700 in 2005-06, and generally continued to fall but at a slower pace until 2020/21. This reflects changes in service delivery, moving away from long-term hospital care towards more community-based care. The data shows that the majority of discharges tend to be for people aged under 25 and more than half of patients treated each year are male (55.8% of patients treated in the Learning Disability specialty between 2017/18 and 2022/23 were male).

It is also important to note that the number of inpatients recorded as treated within the Learning Disability specialty has also decreased (from nearly 900 in 1997/98 to 171 in 2022/23). People who lived in the most deprived areas were three times more likely to experience an episode of inpatient care within the learning disability speciality between 2017-18 and 2022-23. This finding is similar for patients treated for a mental health condition in psychiatric specialities where those from the most deprived areas were 3.1 times more likely than those from the least deprived areas, to experience an episode of inpatient care for the period 2017/18 to 2022/23.

Figure 2. Stays in the Learning Disability specialty, by length of stay category, 2017/18 – 2022/23

Source: Public Health Scotland

The statistics report that a 1-7 day stay is most common (71.3% between 2017/18-2022/23 in the learning disability speciality). Whilst 6.7% have experienced a stay of over one year. As at 31st March 2023, it equated to 91 inpatients who had experienced a length of stay of over 365 days. This compares to 100 inpatients who had experienced a similar length of stay at the same point last year.

  • Scotland’s Devolved Employment Services: Statistical Summary for July to September 2023 published by Scottish Government – 7th February 2024

As we previously explained in the first of our new series of blogs posts covering the latest statistics and data news concerning the lives of people of with learning disabilities, the introduction of a new reporting template has meant that data on the long-term health conditions (LTHCs) for those participating on No One Left Behind (NOLB) services has been collected since the second half of 2022. The latest quarterly statistics publication covering Scotland’s Devolved Employment Services now publishes this information for starts, for the very first time.

The statistics report that since this data started being collected up to the end of September 2023, 8,607 NOLB participants have reported a long-term health condition. Of those participants with a LTHC, 4,820 (56%) reported one condition, while a further 2,224 (26%) reported two conditions and 1,563 (18%) reported three or more conditions. Overall, the most commonly reported LTHC is a mental health condition, followed by participants reporting a long-term illness, disease or condition.

Figure 3: Percentage of NOLB Participants Reporting Long-Term Health Conditions, July to September 2023

Source: Scottish Government

In the most recent quarter (July – September 2023), 40% of NOLB participants reported a LTHC. During this time period the data shows that 898 (23%) participants reported a mental health condition, 342 (8.6%) participants reported a learning difficulty and 211 (5.3%) reported a learning disability. For those aged 25 and under, the data shows that 7.3% of NOLB participants reported having a learning disability between July to September 2023.

Whilst the overall profile of NOLB participants reporting LTHCs has similarities with starts on the Fair Start Scotland (FSS) service, there is a slight but notable difference for people with learning disabilities. Having a mental health condition is also the most (33% of starts) reported long-term health condition for people starting on Fair Start Scotland, but the reporting of a learning disability has consistently been one of the lowest reported long-term conditions (1% of starts). Although during the first few years of FSS, participants may have opted for the Community Jobs Scotland employability programme. Figure 3 shows that 5% of NOLB participants reported having a learning disability between July to September 2023. Therefore, this new data starts to suggest that relative to other LTHCs, individuals reporting a learning disability are more likely to participate in NOLB services than FSS.

We will continue to track the quarterly data on NOLB participants and how this compares to starts on the earlier established FSS service. We will only be able to assess how successful the NOLB approach to employability delivery (which aims to be more flexible and integrated with other key services) has been in supporting people with learning disabilities to find, stay and progress in sustainable work, when the progression and outcome by LTHC data starts to be published. We would expect this to be the next development for this quarterly release and it will be interesting to analyse this data alongside our previous work which included a quantitative review of outcomes from Community Jobs Scotland (CJS).

This insights report showed that whilst available national data suggests that employment rates for learning disabilities are well below the average for other disabled groups, in CJS, people with learning disabilities had job outcome rates (38%), relatively close to the average (40%) for the scheme between 2016/17 and 2019/20. The cost of CJS was higher on average than for FSS, and funding for CJS transferred over to local programmes under NOLB in 2022.

  • NHS in Scotland 2023 published by Audit Scotland – 22nd February 2024

In our last blog we covered a report published by the Scottish Commission for People with Learning Disabilities (SCLD) as part of a project to understand what digital transformation means for people with learning disabilities. The topic of data featured throughout this report and key recommendations fit well with the associated national driver of recovery which NHS Board’s medium-term plans are framed around. Health Boards agree their local operational and strategic priorities aligned to the 10 national drivers of recovery. Included amongst these drivers is a stated intent to “optimise use of digital and data technologies in the design and delivery of health and care services”.

Audit Scotland’s annual report on the NHS in Scotland  includes a strong message that the Scottish Government needs to develop a national strategy for health and social care, recognising that without reform there are clear risks for long term financial sustainability. In relation to digital and data, the 2023 report highlights that uncertainly around the availability of funding could raise questions over the delivery of programmes such as the Digital Front Door and an integrated health and social care record.

The innovation of a Digital Front Door is seen as a means of providing members of the public with digital access to their health and social care information, whilst also providing further opportunities to share data for public benefit. It would support individuals by enabling them to access a range of self-serve health and social care services from a digital source, with the Scottish Government’s Health and Social Care: Data Strategy, indicating that this was originally due to be launched in late 2023. The same source states a commitment to develop a nationally consistent, integrated, and accessible electronic social care and health record which would support people to tell their story once. This objective, which is also restated in the LDAN Bill consultation document, would help ensure that staff have the right information at the right time to deliver the right care. With these programmes seen as necessary developments ahead of the proposed National Care Service, failure to deliver could go far beyond posing a risk to digital reform.

  • Insights in Social Care: Statistics for Scotland, People supported through Social Care Services 2022/23 published by Public Health Scotland – 12th March 2024

This publication by Public Health Scotland provides summary statistics relating to people in Scotland who draw on social care from any services that were funded (partially or completely) by the Local Authority. The title of this release has previously related to support provided or funded by health and social care partnerships (HSCPs) in Scotland, but it is our understanding that it has been updated to reflect that ordinarily it would be the HSCPs who provide/arrange the care, and the Local Authority provides the funding of the care (if the person is eligible).

As stated in the background information for this Official Statistics in development release, people involved in choosing and controlling their support through self-directed support options and who do not receive any of these services from the Local Authority are also included in the count of people receiving social care.

Figure 4: People Supported through Social Care Services/Support as a rate (estimated) per 1,000 population in Scotland 2018/19 to 2022/23

Source: Public Health Scotland

Overall, the data estimates that 1 in 25 people in Scotland were reported as receiving social care support and/or services at some point during 2022/23, with the estimated rate of people supported as a rate per 1,000 population in Scotland remaining broadly flat in recent years (42.8 for 2022/23). The overall number of people reported as being supported in 2022/23 was 234,305 (a very small, 0.1% increase on the previous year), with the headlines stating that the rate of females receiving social care was considerably higher than that of males (605.8 per 1,000 population for females, compared to 389.4 per 1,000 population for males). This is a trend which has been consistent over time.

Figure 5: People with Learning Disabilities supported through Social Care Services/Support in Scotland 2018/19 to 2022/23

Source: Public Health Scotland

The dashboard made available as part of this release, allows us to drill down to people with a learning disability who are supported through social care services in Scotland, with the latest statistics showing 19,455 people across Scotland within this client group for 2022/23. This represents a 4.6% decrease on the previous financial year and is the second year in a row where these numbers have fallen. This comes on the back of the rise between 2019/20 and 2020/21, which is a potentially interesting step change and could be a consequence of the Covid-19 pandemic. However, after checking with PHS to see whether any supplementary information was available as part of the data submission process, we accept that there is no hard evidence to explain why this increase coincided with the pandemic.

It should be acknowledged that at this stage, the 2022/23 figures are labelled as provisional and therefore subject to change following future submissions of data. Data completeness challenges are common with this collection, with some Health and Social Care Partnerships unable to provide all the information required on services and support for all client groups.

Further to this, and as we’ve previously stated – it is important to note that like a lot of collections, this data is likely to undercount social care clients with a learning disability who receive social care services or support in Scotland in any given year. This is because the client group an individual is assigned to is determined by a Social Worker or Social Care Professional and is used as a means of grouping individuals with similar care needs. An individual can be assigned to more than one client group but only where the system being used to capture information can facilitate this, so there may be people with other conditions that are not being assigned to the learning disability care group as it is not deemed the primary reason for why they are drawing on social care support.

Whilst taking into consideration these points of note regarding this data (and making adjustments where appropriate), this is a source which we have heavily utilised in our first attempt at estimating the future number of people with learning disabilities drawing on adult (aged 16+) social care services in Scotland. We have recently published a discussion paper which set out to replicate analysis previously conducted by the Centre for Disability Research (CeDR) at Lancaster University on behalf of Mencap for England. Whilst our results also projected a fall in the number of people with learning disabilities drawing on adult social care services in Scotland for 2022/23, there are a number of areas where data improvement is needed before we can be confident of the figures that this analysis is producing are robust enough to use for planning purposes.

This is why we framed our work as a ‘discussion paper’, rather than a ‘report’, with the intention of helping to focus minds (and resources) on getting this analysis to a point where it can help shape policy decisions. We look forward to future releases of this particular PHS publication, which we’ll continue to use as outturn data, and part of evaluating our on-going efforts in this area. We hope that our discussion paper helps to build understanding of the complexities in arriving at robust estimates and this work once again highlighted that collaboration is key, with data development endeavours unlikely to thrive unless organisations come together.

  • Research report: Preventing people with a learning disability from dying too young published by Nuffield Trust – 13th March 2024

This report looks at five key health care services in England that people with a learning disability should have access to. For the first time information was brought together on obesity, cancer screening, mental health, annual health checks, and early diagnosis. Overall, the report found “clear evidence that people with a learning disability are not always able to get equitable preventative support”.

The key findings highlight the persistence of profound health inequalities for people with a learning disability. These include consistent differences between breast cancer screening (15 percentage points) and cervical cancer screening (36 percentage points) rates, compared with the rest of the population. There is also a notable gap in the prevalence of cancer between people aged 55 and over with a learning disability, compared with those without a learning disability. This illustrates missed or late cancer diagnoses among people with a learning disability, and the research states that it is particularly relevant to bowel cancer.

The report highlights that people with a learning disability are more likely to have challenges with obesity. This is especially the case for young adults, where the prevalence of obesity in people with a learning disability was double compared to those without. On mental health, the research concludes that despite a higher prevalence of mental health problems among people with a learning disability, access to good mental health treatment can often be poor. This is underlined by data from Public Health England which estimates between 30,000 and 35,000 adults with a learning disability are taking psychotropic medicines even though they do not have the health conditions that the medicines are generally prescribed for.

There are also some interesting messages for the Scotland Government as new annual health checks for people with learning disabilities are introduced in Scotland. The Scottish Government direction to Health Boards should see first checks offered to those aged 16 and over with a learning disability in Scotland by 31 March 2024. The evidence in the Nuffield research states that the quality of these checks in England is “variable and needs to be improved”. One example being a failure to not always complete a health action plan as part of the check. This is an essential element as it includes details on what support the person needs to look after their physical and mental health, as well as actions to help them stay healthy. The report therefore recommends that NHS England should conduct a national review of the quality of annual health checks for people with a learning disability.

Uptake of annual health checks in England is also heavily analysed in the research, with GP practices seen as having a key role in enabling access to annual health checks and ensuring that they are effective in meeting their aims. Of Mencap’s estimate of 1.3 million people in England with a learning disability, the research found that only around 26% are on the learning disability register. The evidence does suggest that there has been an improvement in the uptake of annual health checks in recent years for people who are on the learning disability register. However, as the register is likely to be missing around three-quarters of the learning disability population in England, then far too many people are missing out on annual health checks, and this could extend to not being offered important vaccinations such Covid-19 and flu. The report recommends that better use of local data is prioritised to inform targeted information campaigns with an aim to encourage more people with learning disabilities to join the register in England.

  • Summary Statistics for Schools in Scotland Supplementary Statistics 2023 published by Scottish Government – 19th March 2024

Whilst the Scottish Government publish summary statistics for schools which includes headline statistics on pupils, teachers, attendance, exclusions and early and childcare provision in Scotland in December, we have to wait until closer to the end of the first quarter of the following calendar year before further data on school pupil characteristics collected through the annual school pupil census is released. It is within these supplementary statistics that we are able to source an annual update on the number of pupils with additional support needs (ASNs) and the reasons for support.

The school pupil census is used to collect information on all students attending publicly funded schools in Scotland. The exercise is undertaken annually and based on a mid-September date (13th September for the 2023 pupil census). The data which covers publicly funded primary, secondary and special schools is submitted by schools to local authorities, who then submit it to the Scottish Government.

Schools register if their students have additional support needs and include a record for the reason(s) of each need. Learning disability, autism spectrum disorder, mental health problem and both specific and moderate learning difficulties are included as individual codes, amongst a list of 24 different classifications. As we have previously stated, although a guidance document to support the data collection is published online, and has been revised in recent years to provide updated information on reasons why pupils may receive additional support, there are a number of factors which may lead to inconsistencies with capturing the school population who have a learning disability. The main reasons are the interpretation of the guidance itself, the variation in what might be deemed as “additional support” in different settings/availability of resources across the country and inconsistencies with who is actually responsible for compiling the data to be returned.

Figure 6: Reason for Support for Pupils with Additional Support Needs in Scotland, 2010 to 2023

Source: FAI analysis of Scottish Government data

The data published as part of the 2023 school census shows that overall, there were 11,652 pupils recorded as receiving additional support needs (ASNs) due to having a learning disability. One-third of these pupils being female and two-thirds being male. Similar to the last couple of years this equated to 1.7% of all pupils in 2023.

Figure 6 clearly shows that the number of pupils receiving additional support due to having a learning disability has fallen year on year since 2012. In fact, in 2012, the figure was almost 16,000 which equated to 2.4% of all pupils that year. This is interesting because overall pupil numbers have been increasing year on year over the last decade in Scotland, until the latest data for 2023 which shows that they very narrowly fell by less than 0.05% compared with 2022. What makes the drop in pupils with a learning disability even more stark (whilst remembering that pupils with more than one reason for support will appear multiple times in the data), is that the number of pupils for whom a reason for support was recorded in 2023 is now more than double the number in 2012.

The decrease in pupils recorded with learning disability as the reason for ASN seems to be unique in this regard, with other categories seeing notable increases over time. This includes for the other specific learning difficulty, other moderate learning difficulty, autistic spectrum disorder and mental health problem categories. Therefore, one, perhaps partial explanation for what has changed over time, is that there has been a shift in the categorisation of pupils away from learning disability towards these other categories.

Authors

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