“Pieces of the puzzle”: data and unpaid carers

In the first of our Opinions on data and the National Care Service, Claire Cairns reflects on the information collected on unpaid care

For the last four years, ever since the Carers Act became law, I have been seeking an answer to the relatively simple question “What has the Carers Act money been spent on”? But, despite direct questions and some FOI requests, I have yet to receive a full and consistent answer from local authorities, nor to the wider question “How much is each local authority spending on carer support?”

I know from colleagues that my experience is not untypical and they have also met a blank wall when they are looking for answers on how government commitments have translated into reality at a local level.

So why isn’t this information available at our fingertips, included in annual reports and transparent within accounts? Is it that social care is so complex, data will only ever provide an out of focus, blurry picture of what is really happening? Or is it obfuscation? An implicit agreement between government and local authorities, not wishing to draw attention to how money is moved from pot to pot, like the old cups game, nobody knows where it has ended up.

I know I am slightly oversimplifying matters; data is notoriously difficult to capture in a meaningful and consistent way and so often it is collected without a clear purpose in mind. For example, we collect how many carers have received an Adult Carer Support Plan, but does this really have value without knowing if they got the support they needed in the end and if it made a difference to their lives? Yet it is of course challenging to extrapolate such meaning, using the blunt tool of databases and large data sets.

A strong message from Derek Feeley’s Independent Review of Adult Social Care (this link will take you away from our website) was the importance of recording what support people asked for but didn’t receive – the old “unmet needs” question.  If captured, this would be the richest data set available for planning future social care services and if we are serious as a country in our ambition to expand and improve social care, then this must surely be a data must.

It would tell us what people asked for when they didn’t meet eligibility criteria because they weren’t (yet) in crisis, and isn’t this the definition of preventative support? It would also tell us what people said they needed that wasn’t available to them, pointing out current gaps in services, as well as what we need more of.  So often presumptions are made about this, yet having worked in the carers movement for over 25 years, I can say that each caring relationship is like a fingerprint, unique in its own pattern with its own distinct requirements.

So will the role of a National Care Service overseeing data collection lead to improvements in our evidence base around social care? Improvements in our understanding of the outcomes for people who use social care and unpaid carers? And ultimately improvements in people’s ability to live their lives the way they choose?

I suppose it’s too early to tell, without knowing more about the scope and functions of the NCS. But if we are to learn from our current failings, I would say the NCS needs to deliver the following three things:

1. 1. We need more consistency and transparency around data. So often data that is meticulously collected locally, can’t be benchmarked nationally due to variations.  This will require investment in accessible electronic systems,  as well as a common approach on how data is collected.  We also need more transparency around the simple questions, such as what is being spent on what?
   2. A lot of effort is put into collecting data for no reason. We need to only collect data on things that matter, that has purpose. We also shouldn’t underestimate the richness and importance of qualitative data.  Let’s agree to never use the phrase “It’s only anecdotal” again.  People’s lived experience illuminates and provides meaning to data and stats.
   3. While national oversight is welcomed, this information sits locally in our communities and we mustn’t forget that. We must also strike a tricky balance between involving the smaller community-led organisations who are often overlooked when it comes to data, but who provide an essential service, while at the same time not overburdening them with too many demands for collecting, collating and reporting.  We don’t want frontline workers to have to spend hours in front of computer screens instead of supporting people.

My final thought is that while data is an important tool in reforming social care, it can mislead as well as inform. If you are missing too many pieces of the puzzle, you aren’t seeing the real image.

This opinion is part of the ALLIANCE’s Future of Social Care series. You can find other entries in the series here.

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