At the end of November last year, we released the first in a regular series of new blog posts on the latest statistics and data news concerning the lives of people with learning disabilities.
In this, our first round up of 2024, we will comment on the following:
|Date of release/launch
|Learning Disabilities, Autism and Neurodivergence Bill: Consultation
|21st Dec 2023
|Carers Census, Scotland, 2022-23
|12th Dec 2023
|Scottish Health Survey 2022
|5th Dec 2023
|Making Digital Transformation Transformative for People with Learning Disabilities
|Scottish Commission for People with Learning Disabilities
|5th Dec 2023
|Health and Care of People with Learning Disabilities (England), Experimental Statistics 2022 to 2023
|7th Dec 2023
- Learning Disabilities Autism and Neurodivergence Bill: Consultation launched by Scottish Government – 21st December 2023
Over the coming weeks, we at the Fraser of Allander, will be considering our response to the Learning Disabilities Autism and Neurodivergence (LDAN) Bill consultation which was launched just before Christmas and is due to run until mid-April 2024. The Bill will be aimed at upholding and protecting the rights of people with learning disabilities and neurodivergent people. We have previously commented on this and the opportunity it presents to enhance the evidence base for people with learning disabilities in Scotland. We identified that whilst the scoping analysis published by the Scottish Government in February 2023 didn’t explicitly mention data, it was important to recognise that the topics of interest were likely to have a requirement to be underpinned by relevant data in some shape or form. We are therefore encouraged to see that the LDAN consultation includes a section on data as one of five overarching themes.
The consultation references our work looking at the learning disability landscape in Scotland and acknowledges that the current data limitations can “restrict evidence-based policy making and planning”. Importantly many of the thoughts of the Lived Experience Advisory Panel (LEAP) also chime with recommendations we have previously made, especially around consistent and timely data collection, including consideration of how to collect data from GPs.
We welcome the update in the consultation which outlines that work to review and restart the publication of Learning Disability Statistics Scotland (LDSS) is ongoing. This resource has not been published since 2019 and its reintroduction is something that we’ve previously recommended. In our last blog we talked about being unclear on the plans for the data generated through new Annual Health Checks for adults with a learning disability aged 16 and over. We now know that the Scottish Government has funded the Scottish Learning Disability Observatory (SLDO) to undertake research with Scottish Primary Care Information Resource (SPIRE) and Public Health Scotland (PHS) to use the data collected to identify how many people with learning disabilities are registered with GPs.
The LDAN consultation explains that there can often be challenges with data collection, through the need for a lawful basis in order to process personal data. It also introduces the four proposals for consideration on data by saying that the Bill “could provide an opportunity for data to be collected in particular circumstances if that would be beneficial to neurodivergent people and people with learning disabilities”.
The proposals themselves include consideration of developing a commission(er) with responsibility for data collection. Furthermore, whether a body could have powers to make recommendations to other organisations collecting data to disaggregate their data to the level of neurodivergent people, and people with learning disabilities. There are two proposals which cover placing duties on relevant public bodies to collect improved data and to then provide returns to the Scottish Government to help better understand the needs and experiences of neurodivergent people and people with learning disabilities.
The final proposal in the data section is to consider the development of a Scottish version of the Learning Disability Mortality Review (LeDeR) programme. The was established in 2017 and is funded by NHS England and NHS Improvement. It aims to improve care, reduce health inequalities and prevent people with a learning disability and autistic people from early deaths. LeDeR summarises the lives and deaths of people with a learning disability and autistic people who died in England in annual reports. Once LeDeR is notified of someone’s death, their case is referred to a reviewer in the person’s local area. A LeDeR review looks at key episodes of health and social care the person received that may have been relevant to their overall health outcomes.
The 2022 LeDeR report produced by researchers at King’s College London collaborating with academic partners at the University of Central Lancashire and Kingston University London was published at the end of November 2023. Amongst the key findings it showed that whilst there was a fall in the number of avoidable deaths compared to the previous year, 42% of deaths were still deemed “avoidable” for people with a learning disability in 2022. The number of deaths due to Covid-19 had fallen to 6% in 2022 for adults with a learning disability compared to 24% in 2020. The analysis also showed that people with a learning disability are dying decades earlier than the general population. The median age at death for adults with a learning disability in 2022 was 62.9 years old, an increase from 61.8 years in 2018. The report indicates that this improvement is a continuous one despite the Covid-19 pandemic falling within this time period.
- Carers Census, Scotland, 2022-23 published by Scottish Government – 12th December 2023
The Carers Census collects a variety of information on unpaid carers (also sometimes referred to as informal carers) being supported by Local Authorities and Carer Centres across Scotland. The latest release showed that there were 44,310 individual unpaid carers who were supported by local services across Scotland in 2022-23. This was a 5% increase on the number reported the previous year. The report states that the total number of unpaid carers living in Scotland is not known but it was estimated in the latest Scotland’s Carers – Update Release that the number of unpaid carers living in Scotland is around 700,000 to 800,000. This could take the form of providing unpaid and support to family members, friends and neighbours.
Table 1: Percentage of Cared for People by Main Client Group, 2022-23
|Main Client Group
|Autism Spectrum Disorder
|Learning Disability and Physical Disability
|Unknown / Missing
Source: Scottish Government
The Carers Census publication, which is labelled as Official Statistics in development, highlights that the data presented is still being improved and results will likely represent an undercount of the true number of unpaid carers being supported by local services. The need for data improvement is also visible when looking at the percentage of cared for people by main client group data, with table 1 presenting the extent of unknown and missing data. This table also shows the percentage of cared for people (both children and adults) who either have a learning disability or learning disability and physical disability (12% for children and 5% for adults). These percentages are very similar to the data recorded in previous years when the relative proportion of unknown/missing data was even higher.
For this year’s release we have been able to learn that of the 44,310 individual carers who were supported by local services across Scotland, 2,810 (6.3%) carers were caring for someone with a learning disability, with around 180 of these carers caring for more than 1 person with a learning disability. It is important however to reiterate that the Carers Census only covers carers who are being supported by local services or have a support plan, so this figure will not include all carers of someone with a learning disability as there will be many not in contact with services. Cared for people could have multiple client groups, so while a person may have a learning disability, this may not be the main reason that they are receiving support from an unpaid carer.
- Scottish Health Survey 2022 published by Scottish Government – 5th December 2023
The publication of the Scottish Health Survey 2022 in December of last year provides an opportunity to offer a brief reminder of some of our thoughts on this source in relation to the lives of people with learning disabilities.
Unfortunately, the Scottish Health Survey does not currently contribute well to the learning disability evidence base in Scotland. Nothing specific around learning disabilities is covered in the main report. The supplementary tables include data by type of long-term condition. Whether these tables include a specific learning disability category each year depends on sample size. Questions are asked verbally and responses to the type of condition recorded verbatim. These are then coded against a list after the interview, with one of the categories being a learning disability.
The Fraser of Allander provided a contribution to the Scottish Government’s Scottish Health Survey user content review and an initial report summarising the responses has been published. We now await a follow up release which will confirm the changes to be made to the Scottish Health Survey from 2024 onwards. More information on the content review and how possible changes to the long-term condition(s) question could benefit the learning disability evidence base is covered in our Data on the lives of people with learning disabilities in Scotland: short term actions for change report from May last year.
- Our right to be techy! Making digital transformation transformative for people with learning disabilities in Scotland published by the Scottish Commission for People with Learning Disabilities (SCLD) – 5th December 2023
As part of a Digital Transformation project, The Scottish Commission for People with Learning Disabilities (SCLD) recently published a report which discusses recommendations that could help bolster digital inclusion and promote digital solutions for people with learning disabilities in the short to medium term.
This piece of work was funded by the Scottish Government’s Technology Enabled Care team and advice was provided by members of the Digital Social Care programme team. Most importantly it was informed by members of the Digital Navigation Board, made up of ten individuals with learning disabilities who live independently and advocate on their own behalf, and five individuals with learning disabilities whose participation in the project was enabled by the support and advocacy of a family carer or support worker.
The report found that lots more people with learning disabilities are using digital technology since the Covid-19 pandemic. It states that whilst the overall feeling is that using more digital technology has a positive impact on people’s life; barriers do exist around accessibility, connectivity, affordability and apprehensions over online safety.
Whilst this is not a statistical report, the topic of data features throughout. As we’ve stated many times, data concerning the lives of people with learning disabilities is severely lacking and the SCLD confirm that data on how people with learning disabilities engage with digital technology is no different. However, they do manage to source some helpful information which provides useful context within the report.
- Statistics show that disabled people are more than four times as likely to have never used the internet compared to non-disabled people (Office for National Statistics, Internet Users Dataset, 2021).
- A qualitative evaluation of the UK Government’s Digital Lifeline programme suggests that around 35% of people with learning disabilities do not have digital skills for life, compared to 21% of the general population (Good Things Foundation 2022).
Included within the four recommendations is a further call to action for the data collected on the lives of people with learning disabilities in Scotland to be improved:
“The Scottish Government, Public Health Scotland and NHS Boards must ensure a joint approach, with adequate resources, to learning disability data improvement. Pooling knowledge and resources from across government and healthcare bodies is the best approach to improving data on learning disability in Scotland.”
This very much chimes with what we at the Fraser of Allander have previously stated, with the SCLD supporting the view that data improvement work should not happen in silos.
The report also recommends that the Scottish Government support work to build on the PAMIS digital passport, which was developed by the families of people with profound learning and multiple disabilities:
“The Scottish Government should support a co-produced pathfinder project, utilising personal data stores, where people are able to add their health, wellbeing, communication and support information to this data store, and share this with others, including health and social care services.”
Our reflection is that by working directly with people with learning disabilities, their families and carers, this sort of project should consider the many barriers and challenges faced when interacting with services, whilst gathering relevant insight on how technological innovation can improve day to day lives. Exploring the use of a personal data store could enable citizens to collect, receive, and store personal data about them and their life. Empowering people with learning disabilities and their carers to interact and share information with health and social care services in a way that reduces unnecessary repetition and ensures they have access to, and greater control over, their own health and care data, is certainly an area of interest which fits well with the data improvement focus of the FAI’s current programme of work.
- Health and Care of People with Learning Disabilities, Experimental Statistics 2022 to 2023 published by NHS Digital – 7th December 2023
In our first blog of the series, we said that we would occasionally cover sources outside Scotland when there is a particular relevance to do so. With the Scottish Government’s direction to Health Boards to have offered new annual health checks to those aged 16 and over with a learning disability by 31 March 2024, we are keen to once again highlight this statistics publication from England which provides aggregated data on key health issues for people who are recorded by their GP as having a learning disability, and comparative data about a control group who are not recorded by their GP as having a learning disability.
Figure 1: Percentage of patients with a learning disability who had a Learning Disability Health Check in England (2018-19 to 2022-23)
Source: NHS Digital
The latest statistics show that 55.1% of patients registered in England in 2022-23 were included in this publication and 0.5% of these patients were recorded by their GP as having a learning disability in 2022-23. The data shows a statistically significant increase in the percentage of patients with a learning disability who had a Learning Disability Health Check in 2022-23. This increased from 71.8% in 2021-22 to 79.8% in 2022-23 (figure 1).
As well as providing insight into condition prevalence, including new indicators relating to patients with an eating disorder, this source also supports analysis of prescribing rates and cancer screening coverage through a dashboard which charts data for those with and without learning disabilities. It is our view that something akin to this resource should be considered when determining how similar information can be made publicly available on a routine basis in Scotland, using data to be collected through the new annual health checks.