Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 4: Data

What we heard

Better data collection and reporting will enable better understanding of the requirements of people with learning disabilities and neurodivergent people throughout their life and build evidence on whether they are able to realise their rights.

We have previously committed to improving the routinely collected data on autistic people and people with learning disabilities through the Towards Transformation Plan.^[108] Many of the actions in this Plan commit to developing or monitoring our picture of people with learning disabilities and autistic people. Action 9 highlights our ambitions to deliver these improvements working with our partners, however, it is acknowledged there is a long way to go to fully capture the life experiences of these groups through nationally collected and analysed data.

The lack of available evidence has been repeatedly mentioned in reports addressing the well-being of neurodivergent people and people with learning disabilities, such as the Fraser of Allander Institute's report^[109] on data on the lives of people with learning disabilities in Scotland. This lack of data can restrict evidence-based policy making and planning.

It is important that the population of neurodivergent people and people with learning disabilities are visible in topic specific data collections where these are of particular interest, for example, employment data.

What did LEAP think?

• There is a lack of consistent and up-to-date data on neurodivergent people and people with learning disabilities to improve the visibility of these populations. We should improve data collection on key issues for neurodivergent people and people with learning disabilities, including health and wellbeing outcomes.
• An organisation should be made responsible for the collection of data, ensuring it is fit for purpose and published regularly.
• Current data collection and analysis should involve people with lived experience and include looking at intersectionality and particularly disadvantaged groups (eg delayed discharge patients, prisoners etc).
• There should be consideration of how to collect data from GPs.
• Data should be used to monitor and evaluate experiences and highlight gaps.
• People should have the opportunity to understand and contribute to the decisions around data collection and reporting.
• People should have the right to access their own data, but there are instances of services not allowing this.
• The Census should include questions which better capture neurodivergence.

Where do we want to get to?

• We collect sufficient and adequate data and measure outcomes to properly inform the development of national policies.
• We collect the right kind of information and data to know how many people with learning disabilities and neurodivergent people need local supports and services and what they need.
• Definitions of neurodivergent people, and people with learning disabilities, in data collections, are correct.

What happens now?

There are opportunities currently in terms of data sources which identify people with learning disabilities and neurodivergent people, some of which are currently being used for policy making and some of which could be improved by changing demographic questions in data collections.

Most barriers to better data across the public sector, especially for equalities, are wider than just neurodivergent people or people with learning disabilities. Specific issues centre around correctly identifying people, naming and definitions, and maintaining correct records.

The data collected about autistic people and people with learning disabilities is inconsistent. For some data sources, people have to self-disclose (say whether they have a condition) and this can lead to inconsistency too.

Scotland's Equality Evidence Strategy^[110], covering the years 2023 to the end of 2025, was published on 24 March 2023. The strategy states that we know there are gaps in the equality evidence base. The publication includes a three-year plan to make improvements.

We fund multiple bodies to research outcomes for people with learning disabilities and autistic people. This includes the Scottish Learning Disability Observatory (SLDO), Scottish Commission for People with Learning Disability (SCLD), the National Autism Implementation Team (NAIT) and the Fetal Alcohol Advisory Support and Training Team (FAAST).

Relevant reports from the work of these bodies include SCLD's How's Life report,^[111] SLDO's mortality reports,^[112] and NAIT's neurodevelopmental pathways report.^[113] These reports have been helpful snapshots on specific topics and have impacted on national policy making. However, there is a need for routine data collection that lets us know if there are changes over time, allowing monitoring rather than snapshots.

Learning Disabilities Statistics Scotland (LDSS)^[114] is one of the best sources of data we have on people with learning disabilities. It is based on national and local authority level figures.

LDSS only collects data on people with learning disabilities and there is a need to review the questions to ensure they are fit for purpose. Additionally, there are issues in terms of the completeness of the returns from local authority areas. Due to issues with returns, data protection and prioritisation during the pandemic, LDSS has not been published over the last 3 years. However, work is underway to review LDSS and restart data collection and publication.

In England, the LeDeR programme^[115], funded by NHS England and NHS Improvement, was established in 2017. It aims to:

• Improve care for people with a learning disability and autistic people.
• Reduce health inequalities for people with a learning disability and autistic people.
• Prevent people with a learning disability and autistic people from early deaths.

LeDeR summarises data on the lives and deaths of people with learning disabilities and autistic people in annual reports. Once LeDeR is notified of someone's death, their case is referred to a reviewer in the person's local area. The reviewer will contact the multiple people (including family member / carer and the person's GP) to talk about the person's life and death, usually within 6 months. 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 reviewer will send the completed review to the local governance group or panel with the areas of learning, good practice and concern. The group or panel will decide on actions to take, who will take these actions, and the help they need to reduce health inequalities and stop people dying too young from preventable causes.

What can we do about it?

Work is currently ongoing to review and restart the LDSS data collection. We have also undertaken an exercise to assess the data and evidence collected across Scotland to identify the priority gaps. This assessment has informed the development of a data action plan that we and our partners will take forward to address gaps and improve our understanding of people with learning disabilities and autistic people across Scotland throughout their lives.

Through our extensive work with people with lived experience we collect a great deal of qualitative data which informs our policy work. This includes a Leadership and Engagement project which is an opportunity to bring people with lived experience together with people responsible for providing services nationally and locally. Working with our partners at Inspiring Scotland and the Learning Disabilities Assembly, we have also undertaken exercises to gather the voices of people with lived experience through surveys and focus groups. We are currently working with autistic people and people with learning disabilities to implement the findings of this work.

In May 2022, we announced Annual Health Checks for adults with a learning disability aged 16 and over across Scotland. Each Health Board area will offer every eligible person a first check by 31st March 2024. We have funded the Scottish Learning Disability Observatory to undertake research with SPIRE and PHS to use the data collected as part of this work to identify how many people with learning disabilities are registered with GPs.

We set out our Health and Social Care Data Strategy^[116] in February 2023. Together with COSLA, we are committed to developing a nationally consistent, integrated, and accessible, electronic social care and health record. The integrated record will support people to tell their story only once and ensure that staff have the right information at the right time to deliver the right care. This record, including the requirements of this record, will be co-designed.

What can the LDAN Bill do?

In order to achieve the desired outcomes, organisations often need to link different pieces of data to paint a full picture. However, a barrier to being able to do this is that there needs to be a legal basis for some types of data to be collected, including personal data. 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.

Proposal 1: Developing a commission(er) with responsibility for data collation

Elsewhere in this consultation, at the section entitled "Accountability", there is discussion on the possible creation of a new Commission or Commissioner, or adding to the remit and powers of an existing body. If a Commission or Commissioner (or other relevant accountability model) is created, their functions could include responsibilities for collecting and analysing data on neurodivergent people, and people with learning disabilities.

Additionally 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 some other options that would need to be developed further, however, to help us with this, we would like to know your views on the following:

Proposal 2: Placing duties on some relevant public bodies to collect data on neurodivergent people and people with learning disabilities where this would be helpful for better understanding of the needs of these groups, their experiences, informing service design and improvement, and to allow for evaluation of measures to improve outcomes for these groups.

Proposal 3: Placing duties on some relevant public bodies to provide returns to the Scottish Government regarding local data on people with learning disabilities and neurodivergent people, where this would be helpful for better understanding of the needs of these groups, their experiences, informing service design and improvement, and to allow for evaluation of measures to improve outcomes for these groups.

Proposal 4: Consideration of the development of a Scottish version of the LeDeR programme. Similar to Child Death Reviews, a programme could be established to ensure when someone with a learning disability dies, that a review happens to identify why they died and share the learnings of how it could have been prevented. Teams would need to be established to undertake this work, including the appropriate training. We would use examples of good practice to share across the country. This helps reduce inequalities in care for people with a learning disability. It could reduce the number of people dying sooner than they should.