Without good data, how can we have evidence-based policy?

Hannah Tweed reflects on what has changed – and what has not changed – in social care over the last ten years.

Ten years ago, while Self-directed Support was in its infancy, the ALLIANCE published ’12 Propositions for Social Care: Living well with long term conditions’, based on research by Dr Jim McCormick. Rereading the paper now, it is remarkably prescient – both in what has changed in the social care landscape, and what remains to be done.

Since the paper was published, Self-directed Support (SDS) has become the way in which social care is delivered in Scotland; and for many, this has improved their lives. According to recent research by the ALLIANCE and Self Directed Support Scotland, 74% of people surveyed agreed that SDS has improved their social care experience, with people for whom it worked well describing it as the “a la carte of the care system” and “the passport to independence”.[1] However, implementation is still variable across Scotland, and the impact of over a decade of austerity – also highlighted in 12 Propositions – adversely affects many people’s access to services, independence, and quality of life.

In the context of the proposed National Care Service, with a Bill being introduced to Parliament in 2022, the section in 12 Propositions on investment and evidence stands out. Jim McCormick stated that “money needs to follow the best of the evaluation evidence available”, and reflected that despite political rhetoric, “it’s striking how the evidence rarely plays more than a minor role in long term change […] Even where we do have robust, home-grown evidence, we may be unable to track whether this has influenced investment decisions in local authorities”.[2]

Scotland has a range of research to evidence what is and is not working in social care – from the recent ‘Independent Review of Adult Social Care’ to ‘My Support My Choice: People’s Experiences of Self-directed Support and Social Care in Scotland’, and the ongoing analysis of Public Health Scotland, the Care Inspectorate, and Audit Scotland. However, there remain substantial data gaps, and there is little in the way of ongoing intersectional data collection and analysis of people’s experiences accessing – and trying to access – social care.

If the National Care Service is to ensure equitable access to social care, and improve current systems, it must be able to respond to the requirements and experiences of people accessing (and trying to access) social care. Such action should be based on good quality data collection, co-produced with people with lived experience. As such, a decade after our initial calls for human rights and evidence-based policy in social care, we recommend that the National Care Service legislation must include a duty on local and national public bodies to carry out systematic and robust data gathering on people who access social care (following principles of consent and choice).

This data collection should use mixed method approaches to survey people’s experiences, and be co-produced with disabled people, people living with long term conditions, and unpaid carers. Analysis of results must be published in accessible and publicly available format on at least an annual basis, and include intersectional analysis on how social care is working for different groups of people across Scotland.[3] Without concerted efforts to improve intersectional analysis, it is likely that the requirements of seldom heard from groups will go unmet, and current patterns of variable access to social care will continue under a new name.

Local and national public bodies should also indicate how they use data on people’s experiences to inform their decision making – and particularly analysis that reflects the experiences of seldom heard from groups. Such actions would be part of meaningful engagement with human rights based approaches, in enabling targeted action to support parts of the population who do not have full access to social care, and be part of wider action to improve transparency.

Without meaningful change to how decisions are made, by whom, and what information is used to inform them, the National Care Service runs the same risks as McCormick predicted for SDS (and its ensuing successes and failures). It is imperative that data collection on people’s experiences is improved, focusing on co-production and intersectional analysis, and that this information is used to ensure equitable access to social care for people across Scotland.

References

[1] The ALLIANCE and Self Directed Support Scotland, My Support My Choice: People’s Experiences of Self-directed Support and Social Care in Scotland (2020), p. 29. Available at: https://www.alliance-scotland.org.uk/wp-content/uploads/2020/10/ALLIANCE-SDSS-MSMC-National-Report-Oct-2020.pdf.

[2] Jim McCormick for the ALLIANCE, 12 Propositions for Social Care: Living well with long term conditions (2012), p. 32. Available at: https://www.alliance-scotland.org.uk/blog/resources/12-propositions-for-social-care/.

[3] The ALLIANCE, Consultation response: A National Care Service for Scotland (2 Nov 2021), p. 34. Available at: https://www.alliance-scotland.org.uk/blog/resources/national-care-service-consultation-response/.

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