This report accompanied by ‘Learning Disability Data – Looking Beyond Scotland (Background Report)‘, represent the first outputs from our second programme of research looking at the lives of people with learning disabilities.
Whilst our previous programme of work highlighted barriers and inequalities, this programme is aimed at finding solutions and evidence to enable change. This starts with this report, where we have taken a closer look at the data sources which currently exist in Scotland, to focus in on what we know and don’t know about people with learning disabilities and explore how the data that we have available can be improved.
We have set out three initial actions that could take place in the short-term to support the continuous improvement of the evidence base in Scotland. These recommended actions are concerned with making the most of data that does, or soon will, exist and is under the control of the Scottish Government and its public sector partners in Scotland.
- Responsibilities to be clarified in relation to the publication of Learning Disability Statistics Scotland (LDSS) which has not been published since 2019 to ensure that this data is fit for purpose and continues to be published in full, with the added value of now being collected as part of the wider Public Health Scotland (PHS) SOURCE Social Care data collection realised.
- Make the most of the potential of existing data, particularly the undertaking of more routine linkage of established existing data relating to the lives and experiences of people with learning disabilities. This should be prioritised and outputs made available on a regular basis.
- The Scottish Government and partners in PHS and the National Health Service (NHS) should actively consider how they could collate relevant data from General Practices (GPs), alongside how data from the new annual health checks will be used to monitor and report on the health of people with learning disabilities. People with learning disabilities must have the opportunity to understand and contribute to the decision making process around this, including the bringing together of this data in order to build a national register of people with a learning disability.