Lived Experience - and how not to Design a National Care Service
Nick Kempe - 30th September 2022
In March 2022, Marion McLeod and Mark Smith took a look at the trend among Scottish policy makers towards reliance on the subjective information supplied by individuals to the exclusion of more accurate, robust and representative data”. In social care this is called the “lived experience” and the Scottish Government has decided to make this central to the design of its proposed National Care Service (NCS). To that end at the end of last week the Scottish Government invited the public – recognising everyone needs care at some points in the lives - to apply to join its “Lived Experience Experts panel” .
While it seems someone in the Scottish Government believes conflating Lived Experience with “expertise” maybe attractive to some people, it is equally likely to put others off applying. Most people appreciate that however awful their experience, that doesn’t make them an expert. For example, being stuck at home, having to wait for an assessment for months and then being refused a service doesn’t in itself qualify you to say what the Scottish Government needs to invest to address the problems that people in similar positions are facing.
People’s experiences of social work and care service services are, of course, crucial to judging whether or not they are fit for purpose. The way some of those experiences were made public during the Covid crisis – particular in care homes - played a crucial role in raising public awareness about the failures in our care system. Shocking and powerful as the stories about lived experience were, it also required statistics, such as the number of people who were dying and the number of Covid-19 positive people discharged to care homes from hospital, to enable people to understand that the horror stories were not just isolated problems but part of a wider system failure. And the reasons for that and the lessons to be learned require another tier of understanding which is now being officially investigated as part of Scotland’s Covid-19 Inquiry.
The point is that relying on lived experience alone, without considering the data – for example the terrible figures about the number of people who die prematurely in Scotland from drugs, alcohol and suicide – or understanding how current system work – is not the way to design a new National Care Service.
Setting up a lived experience panel at a national level which comprises people who have nominated themselves creates further challenges. First, a large proportion of people needing social care have great difficulty or are unable to articulate their experiences, because of dementia for example, and many don’t have any friends or family to speak on their behalf. To reflect their experience, we need research and, dare I say it, social workers, care staff, trade unions, care providers and advocacy services who are prepared to speak out about people’s needs. Most of those groups have been sidelined from the co-design process. Second, for those people who do put themselves forward, there are the questions of how the Scottish Government intends to resolve differences of opinion and how it will tell whether the views expressed are representative.
The Scottish Government’s apparent answer to these questions is to ask people for information about themselves “so that we can make sure the panel represents a wide range of people, with different experiences and expertise.” How they will when there are just three very general questions about whether the applicant is waiting/in receipt of care services or caring for someone in either an unpaid capacity or part of their job is unclear. These three questions are followed by four on identity, two on social class and just one relating to a person’s actual experience of the care system, whether the applicant was in care as a child. While there is nothing wrong with these questions in themselves, it is surely equally important to ensure that there are people on the panel from other care groups, including people who require specialist provision, and have experience of a range of care services such as Deafblind People for example. There is no way at present for people to record that “expertise”, so how the Scottish Government will use the information provided “to help match you with co-design activities” is unclear.
As worrying is the way the panel will operate: it will be asked to consider topics selected by the Scottish Government (five initially) and will do so through surveys, interviews, commenting on proposals etc. This does not fit any model of co-production, rather it is more like government by opinion poll and top-down, a worrying portent of things to come if care is centralised under the control of Scottish Ministers.
In mid-July I submitted a Freedom of Information request about the Adult Social Care Reform programme initiated by the Scottish Government and Cosla prior to the Covid pandemic. The documents supplied suggest that rather than responding to the fault-lines exposed in the pandemic, the Scottish Government’s NCS proposals are in essence a continuation of the previous reform programme. But the FOI response also revealed that a People Led Policy Panel had “been meeting regularly since October 2018. Meetings then were once a quarter. Since 2020 and the onset of the pandemic they have met more regularly online”. In 2021 there were five meetings, with peer support meetings in between.
How that reform work and the panel related to the Independent Review of Adult Social Care which preceded the Scottish Government’s proposal for a NCS is unclear, as it how that People Led Policy Panel will relate to the new Lived Experience Panel. Even more worrying, the Scottish Government has refused to release the names of the people on the People Led Policy Panel citing Data Protection. It should be completely unacceptable that the people the Scottish Government is getting to design the NCS, whether consultants from KPMG or people selected because of their lived experience, should be kept secret and that the NCS is, as a result, being designed by people accountable to no-one, not even their peers.
Common Weal set out a very different model for empowering people with lived experience to design the NCS in Caring for All. We started from the bottom up, rather than the top down and advocated a collective rather than an individual approach. So, for example, we proposed the people using a service, their unpaid carers and the frontline staff supporting them should have statutory rights to be involved in managing that service and ensuring it was delivered in a way that best met needs. Those people could then choose who they wanted to represent them at the local community level – where the number and type of services should be decided – and then above that at the council and national level. Instead of government deciding whose views are representative of the lived experience, the people with the lived experience would do the choosing in a democratised care system where power was devolved to those most affected by it.
If we want a National Care Service that can truly care for all of us then it cannot be built on a foundation of secret lobbying. The Scottish Government has to decide what it cares about more. People, or power?