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Scottish Learning Disability Week is Scotland’s learning disability awareness raising week, which takes place in May every year and celebrates the rich contribution that people with learning disabilities make to society. Every year has a different theme that is important to the lives of people with a learning disability. This year’s theme is ‘Lead to Change’ which the Fraser of Allander’s new programme of work on learning disabilities in Scotland endeavours to support.
When the Fraser of Allander first started undertaking research on the topic of learning disabilities in Scotland, we quickly learned a lot about the barriers, inequalities and challenges which this group of people face. In fact, in many areas of public life learning disabilities were absent from discussion and invisible when it came to relevant data. We strongly believe that improving the quality and quantity of information that is collected and shared is a critical step to ensure those with learning disabilities are no longer invisible in Scotland’s public discourse. With thanks to funding from Acorns To Trees, we are redoubling our efforts to understand what can be improved and putting forward solutions that we believe will make the biggest difference.
Change is about doing things differently and successful change is usually delivered through continuous improvement activity which is informed by robust and relevant data. As we have stated previously the evidence base for people with learning disabilities in Scotland is severely lacking and therefore cannot possibly inform current policy in the most effective way. Provision of services run the risk of being crudely informed by data which is available but not fit for purpose.
Although there are no guarantees, a good evidence base should go a long way in helping to deliver positive change. If suitable time can be afforded and relevant resource brought together to focus on improving the learning disability evidence base, there is a real potential to be able to do more over the short-term. With this in mind, we have today published a report which outlines three initial actions that could take place to support the continuous improvement of learning disability data 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.
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. Longer term, we also need to consider where data does not exist, if/how it should be collected, and who should be responsible. This may include wider UK bodies, such as the Office for National Statistics. We will return to this in future reports. The actions have been identified after taking a closer look at the data sources which currently exist in Scotland, as we really start 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.
An important aspect of leading successful change is by looking at what works well elsewhere. This includes appreciating common challenges. We have therefore taken stock and reviewed what we know about learning disability data beyond Scotland. Today we have also published a background report which looks at relevant data sources across the UK, and further afar in countries that can offer useful comparisons and benchmarks.
No country seems to have the perfect solution and this work has highlighted many trade-offs such as on cost, frequency/timeliness, data richness, when it comes to collecting data for people with learning disabilities. We can use this to inform how we work more innovatively in Scotland but just as important how we might be able to work smarter by considering where value can be best added. For example, looking at the cost effectiveness of enhancing the current utility of existing data through more routine data linkage, against considering where individual collections may want to capture additional data such as social and economic indicators as standard.
Working smarter is particularly relevant because as we have previously stated, the dedicated analytical support for learning disability policy within government in Scotland is currently far too limited. This resource needs to be boosted to ensure Scotland is leading with evidence-based change which can be successfully sustained. Bringing together relevant expertise from across the public sector on a regular basis to supplement and work with the limited analytical resource within government would be a good initial way forward.
Read the full report here.