Ep3: Where research transforms access to children’s social care records

Host and Producer

• Dr Rosie Anderson, Research Fellow, Public Health Policy team, UCL

Guests

• Elizabeth Shepherd, Professor of Archives and Records Management in the Department of Information Studies, UCL
• John-george Nicholson, care experienced adult and co-researcher
• David Holmes, CEO of Family Action

Transcript

Rosie Anderson  0:06   

Hello, and welcome, or welcome back to the podcast where research transforms lives. I'm Dr. Rosie Anderson. And every Thursday this summer, I'm inviting you to take a deep dive with me into the UCL research that has changed the world around you. In this episode, we're talking about something most of us take for granted, remembering our childhoods, or maybe not so much remembering as telling the story of growing up, how and why we turned into the people we are today. For most of us whether that story is good or bad, or a bit of a mix, we rely not just on our own memories, but those are the people who watched us grow. But when there's a rupture in that childhood, when those people might no longer be around, that story can become splintered, and shattered into many versions. For many people who've experienced care growing up, there's the version they remember. Then there's the version of state care services, social workers, police hosted professionals, chose to record thanks to Freedom of Information laws, care experience, people can now see what's in their official file. But so far have been left to make sense of it themselves. John George Nicholson is one of those people. And I sat down with him and Elizabeth Shepherd, Professor of Archives and Record Management at UCL to talk about their research into how we can make this experience better for adults and children alike. And we were joined by David Holmes, Chief Executive of Family Action, which is turning their insights into practical support for care experience, people and public services. So we'll start with you, John George, and how did you start looking into the records that were kept about your time being looked offering care, 

  

John George Nicholson  1:48   

I first came across the records, because I used to work at it used to work at a bank. And as part of working there, you had to attend training. And one of those training sessions was about the Data Protection Act. And as I was sitting there, and one of the slides that came up said that you had access to any information that was held about you. And it suddenly got me thinking that as someone who had grown up in the care system, there must be records about me, people must have kept records. So I went home, and I found the council that was that looked after me. And I asked somebody, could I get access to these records. And at the time, I remember the person I spoke to wasn't certain. And then I forgot about it. And then a number of months passed. I remember I was kind of rushing out for work one morning and literally was ran into the postman. He stuffed like a brown paper bag, brown paper package in my hand, I signed for something, I ran for the bus. And then I got on the bus to go to work. And like I remember it was it was the one to six that went from Dudley to Birmingham because I was living in the Midlands at that at that time. And I remember I sat right at the front, it was dark still, because it was wintertime it was raining, the windows were were steamed up. And I remembered I had this package. So I pulled it out of my bag, I opened it up to find this, this red a4 binder and I opened it up. And on the first page I saw, it was like a chronology of all my moves from when I've been in the care system. So there were about 15-16 moves different foster homes, different children's homes, different places. And suddenly, you know, all these memories start coming back of all these different places that I'm reading about. And then I turn the page and then I start reading. And it's you know, various social worker reports, psychologists reports, police reports, school reports about my life as a child from about the age of probably about five, six, predominantly from about eight, nine until you know 18. And that was the first time I'd come across the file. 

  

Rosie Anderson  4:03   

And you had no idea what was going to be in that file at that point. Is that right?  

  

John George Nicholson  4:08   

I hadn't I had given it no thought about the the file. I mean, I call it the file. I had I had no idea. I just thought there are records that are created. There must be something about me in there. I just thought it'd be interesting. I didn't even think about the levels of information that would be in there. It was just out of curiosity. 

  

Rosie Anderson  4:29   

And were the things in there that you weren't prepared for that you'd learned for the first time were the things that you had been expecting, but there were different.  

  

John George Nicholson  4:38   

I mean, yeah, I mean, there was there was lots of things in there. I wasn't expecting, you know, there's obviously you'd have memories that you've repressed or people you'd forgotten about different things and suddenly reading them in black and white. They were they were you know, almost coming at you the images of you know of all sorts of different people, different characters, you know, just to be It's not it wasn't all negative there was, you know, it reminded me of some some lovely moments as well. But it was hard to sift through and find the more positive moments because it was so dense in that negativity. Like I say, I'm 44 now. So I've read that file many, many times and have a very different relationship to it. But back then, that was just a lot to take in at once for one person, you know, on an hour's bus journey, and it was, yeah, it was a lot. 

  

Rosie Anderson  5:30   

How would you describe what it was like, emotionally, 

  

John George Nicholson  5:34   

I mean, it's really difficult to go back into that kind of space. And imagine what it was like, I just, I just remember it feeling like, kaleidoscopic, as in so much is coming at you. And I think one of the things that about growing up in the care system, you know, I don't know if it's a positive or a negative thing, it's maybe a bit of both at times. But one of the things you're very good at putting up a wall. So I imagined as it was coming in, it was a lot to take. I mean, I was in tears, I was wearing a hoodie and I put the hoodie up, because I didn't want anyone to see me, it's kind of 22 year old man on the bus crying on the way to work. It was just a lot to take it, I suppose some of it would have I'm imagining because it like I say it's hard to go back would have been quite numbing, but I just remember going to get into work, and just kind of locking myself in the toilet for about 20 minutes composing myself, and then just going into work at the bank like nothing, nothing had happened. But it was it was a lot. It's a lot to take in. 

  

Rosie Anderson  6:34   

I can only imagine. And thank you for sharing that with us. I want to bring in David and Elizabeth now. Because, you know, that's one person's experience. But I'm guessing that there have been so many experiences. And I want to I want to ask you how both of you first became interested in this and maybe starting with with you, Elizabeth, how did you start to do research in this area was, is there a reason why or did you just stumble upon it. 

  

Elizabeth Shepherd  7:04   

So the mirror project, which stands for memory, identity, rights, and records and access is a project that developed has developed out of many years of research by different people in the Information Studies Department. My research in the past has been looking at things like Freedom of Information Act and data protection of bureaucratic regulatory environment, and thinking about the role of record keepers in enabling organisations to comply with the legislation and regulation. And obviously, that's one part of what you see in a care file. It's the regulatory bureaucratic documentation of the care system. But it's very, very much from the corporate parent, the organisational point of view. And I have other colleagues who've worked for years on community archives participatory approaches to thinking about the role of archives in society. And what we did in this project was to bring those two parts of two approaches to studying record keeping together. And what was important here was to try to put into the centre, the human experience, the people, the children whose lives are partly captured in these care files, and try to understand what the bureaucratic care file looks like, from the child's perspective, or the care experienced adults perspective, and then try to help record keepers to understand the consequences of what they're doing when they're doing their professional bureaucratic record keeping roll. And that was the premise for the the whole piece of research. That's what we tried to do in this case. So we worked in a very participatory way with a group of co researchers who are care experienced adults, including John George, we had 11, in the end, who worked with us. And they worked with us through the whole project, designing data collection, data analysis, and importantly, how we make the findings useful. Yeah. 

  

Rosie Anderson  9:07   

Well, I want to come back to you about that in a little bit. Because I think that's quite interesting for us and pick a little more. But, David, I just wanted to ask, from your perspective, how did you become aware that this was this was an emerging issue? There are lots of people struggling with this individually? 

  

David Holmes  9:22   

Well, I've worked with children and adults who have been adopted or in the care system for more than 20 years. And throughout that time, I've always been hugely interested in the importance of having a real understanding of our identity, and our backgrounds. And those of us who didn't grow up through adoption or in care. We have this sort of shared history of our childhoods that we share with our families and relatives and friends and neighbours are And and if this, whether those experiences were happy or sad or mixed, it is this, this broad perspective and understanding of that childhood. It is very, very difficult for people who don't have access to that same source of information, because something is just missing. And so I've always been hugely aware of how vitally important any information is about childhood to people who otherwise don't have access to that information, how hugely precious is. And so in a previous role, I did a lot of work developing access to information for people who had been adopted. And through the introduction that we have to Elizabeth's mirror project, there was a real opportunity to work with that team, and the care experience, people who are advising the team, to cry, try and create a similar resource for people who had been in care. And so what I'm really interested in is making sure that we all have a shared understanding of just how important any information is about someone's childhood, but also that we understand how vital it is to be able to support people in accessing that information and processing it. I don't think we could hear any more clearly about them. John George has explained to us about the impact of just reading that information. 

  

Rosie Anderson  11:49   

I think, then what you're saying is we all have a kind of oral history of our lives, don't we, that we talk about, and we retell, and we tell and retell, and other people tell it, and sometimes it matches, and sometimes it doesn't. But John George, what you described in that envelope was quite a long way away from that as a as a record of who you are. And I think was what you said there about why you wanted to work in a participatory way about this, that the person whose voice is missing from that was yours. I want to I want to hear how you got involved on George. But I think maybe first, we should understand a little more about how you Elizabeth decided to work in this way. Why you what you've already touched on why you wanted to work on this way, but you know, how that helped the research process. And then how you went out and look for people who wanted to take part? 

  

Elizabeth Shepherd  12:41   

Yes, so that the research process was transformed by the contact we made when we were planning the work with the caregivers Association, the largest care leaver run association to support care leavers. And they helped us both to find care experienced adults to work with, but also, from the very beginning was such fantastic advocates for improving the regulatory setting for care experience people. Because in law care experience, people have much less access than adopted people to their care records and other things about that childhood. But we felt that what we could perhaps contributed was some improvements in how records are created, maintained and kept now in authorities that look up to children now. So we work with the Caleb's Association, they helped us to identify character standards to work with us on the project to be co researchers on the project. But what came across incredibly strongly from the very beginning was that in almost every case, where care experience personhood, access their file, their voice was not in it. So the corporate parents voice was there all the way through. But the child's voice was almost entirely absent. No photographs, there were no school certificates. There were no memory objects. There was nothing about what the child felt about what was happening. And that came out from the very beginning, was that fundamental putting the care experience child their needs wants and voice centrally in the research was fundamental. And because we work with care experience, adults all the way through, they would remind us all the time quite. This has to be central. First, this has to go in the middle. And that transformed the way we approach the research from what we would traditionally have done. 

  

Rosie Anderson  14:46   

So John George, what kinds of things did you have those conversations about? What kinds of things came up, 

  

Unknown Speaker  14:53   

I'd seen an article in the UCL newsletter that was talking about the work that was going On and immediately, I was struck because it was very was so clear that they were listening to care experience people that I kind of wanted to say something is quite clear that I like to talk. And it was amazing just that how relaxed I was made to feel in that space, which is really, really critical. I don't even remember it being like a kind of an us and them situation as in the care experienced people and the researchers, I just felt like we were all kind of worked singing from the same song sheets, I don't even think about it to me as us telling you change this or change that. I just feel like through the process, we were just like, kind of all all moving together. But what was happening is that it felt like we were being given free rein just to tell our story and talk about our experience of accessing accessing our files. Talking about importantly, what what would we want to be different? I think sometimes there's there's a tendency, and this can happen sometimes when you talk talk to care experienced people and you know, done this myself, where sometimes we can be talking about what has happened. And whereas what was really what was really good here was just trying to think about what do we want to change? And what do we want to make different for for other people that are in the care system? And how how would they benefit from this project? So I've totally not answering your question i know. 

  

John George Nicholson  14:54   

No, no, no, actually, you know, I mean, that's your story. That's your journey towards being part of this project. And it sounds like there was something about the way that the project was being done. They're really cool to you. And you thought, actually, I want to, I want to pop this. 

  

So, you know, I think about research, and sometimes it feels really far away. Like it happens in labs, or it happens, but you know, people in white coats and what have you. And I work at UCL. So I've you know, much more understanding now of how, you know, research works in a different ways in which it works. But people use that word impact all the time in research, impact, impact impact, but when you're in it, and you're experiencing that impact on a real personal level, as an individual, but then also seeing the effects on other people. And then thinking about the outputs from this kind of project affecting the system. And the idea of it affecting people that are making these records, the archivists, thinking about social workers. So when you talk about impact, I can see where, where this work is going and all the different areas it's touching. I mean, it's really powerful. And, and this, the voice of care experience people is right at the heart of it, you know, talking about my file is 126 pages, I feature on one of those pages, my voice is on one of those pages. But throughout this process, and throughout doing, you know, working on this research project, with with Elizabeth and everyone, we've always felt like our voice was so pivotal, and really, really mattered. 

  

Unknown Speaker  18:07   

So one of the outcomes that we're still working on, has been a children's diary app. And we spent a year working with olm systems who are software providers, for social care recording systems. And they helped us to develop the specification for an app, which has the very specific purpose because this is one of the strongest findings, to encourage and help and enable social workers and children in care to make sure that the child's voice can actually be represented in the official care file. Often we were told by social workers, we want to do this, but the system doesn't allow it because the software only wants the bureaucratic answers. And so we've been actually working on, we've got the app specification. And then this year, we've worked with a group of computer science students at UCL to actually try to well, they've developed a prototype app, which will then take back to the software providers and see, can they bolt this on to the recording system for children socially. So that's just a small example. But that's a practical intervention, which, you know, if we can get people to take that up actually ought to labels social workers, and the child in care to actually put the child's voice in the file, which clearly hasn't been not happened in the past. There's work in Brighton and Hove where the social workers are thinking about writing to the child in the care file. So there's some work there and in other parts of the country as well. So there are various practical interventions, which might enable the child's voice to be represented. That was one of the clearest things, but also the work but family connectors which you might want to hear a bit more about. 

  

Rosie Anderson  19:56   

Yes, absolutely. So, David, I know that your organisation has done quite a lot of work with, with what came out of this study. And, you know, would you like to just sort of take us through how you've picked it up and done things with it? 

  

David Holmes  20:10   

Yes. So I don't have care experience and I'm not a researcher, my expertise is in creating services. And I guess I have a very practical approach to trying to think about what might help. And so it was a very happy coincidence, really, because my organisation from the action was already working on a new website. And the whole point of that it was going to be called Family Connect was to build on experience I and others had had with working with people had been adopted, to try and bring together in one place nationally, a really practical guide about how to obtain information about your past. And so the whole idea was that it would have a section for people who had been adopted. In the future, we wanted to develop a section for people who had been in care, perhaps a section for people who had been separated from their families through other reasons may, maybe because of family arguments, or other forms of separation, may be a section for people who've been donor conceived. And so it was just this idea that we needed to get advice and guidance for people in all those different situations in one place. And through working with a consultant who I knew well called Julia Feast, we were already very far down the line in terms of the adoption content for this website. But then Julia, put it in contact with Elizabeth and the mirror team. And we suddenly saw this opportunity to sort of ride on the back of the amazing work that they were doing that was, as we've heard, really, hugely informed by care experienced adults, and take some of that learning and content and use it to populate the care part of Family Connect. And so we were able to do that. And two years ago, now, we were able to launch family connect with really well developed adoption and care sections already on the website. And two years later, it's been visited by more than 21,000 people. And the use of the website is increasing. So in December this year, it had nearly 3000 visitors in that month. Gosh, and what I think is, I think quite humbling about that is just what a need there is out there for information. And what a responsibility there is to ensure that the guidance on that website is really well written that it's really informed that it gives people information and knowledge about what to expect, and how to go on this journey. So that people don't end up on the 126 bus, reading their file, for the first time without any preparation for it. But also how, and this sounds maybe a bit grandiose, but also how, as a country as a society, we really start understanding how precious this information is. And we put all of our efforts into both preserving the information, but also wrapping our sort of collective arms around it to make sure that we're cherishing it. And we're then thinking about how we share it really well. Because this is, you know, this this is like precious jewels for four adults who don't have all of that information about their childhood. This is so precious, and we need to view it as such. 

  

Rosie Anderson  24:23   

I think one thing that's come through from all three of you is how as a society as a culture, we take for granted, telling our story of ourselves, and that we get to do that with the people who've mattered most in that story. And that we probably shouldn't we probably should be a lot more mindful of that and that we should pay attention to people whose experiences are different for different reasons. So I I'd love to know a little bit about how you all have gone about making what have you recommended Well, let's start with people who are care experienced They may be looking at these records for the first time, you know, 

  

David Holmes  25:03   

I think for me, the key learning is be prepared. So be prepared for what what you might receive, be prepared for the fact that you might not receive anything. If if through some tragedy, those those care records don't exist, or they can't be found, or they're in incomplete, be be prepared for that. Be prepared for what you might receive may be redacted. So seeing as sections of the information may have sort of been blanked out. So you don't get the full picture. 

  

Rosie Anderson  25:40   

Can I ask why that would be why  would sections be redacted? 

  

Elizabeth Shepherd  25:45   

Yes, this is one of the most contentious issues is the question of redaction or blanking out sections of the care file. And this occurs because under the Data Protection Act, whilst you're entitled as an individual to your personal data, your personal data, you're not entitled to the personal data of other individuals. And obviously, a care file involves many individuals, including yourself, your siblings, your family, the people who looked after you, other people, other people who you're in touch with. And taking a very risk averse view of what the Data Protection Act requires in terms of removing what's called a third party data, which has information about other people than you that requester results in a lot of redaction in some cases. So large amounts of the file being blanked out. So you get the file, your care fil about your childhood. And there are a whole swathes of it blanked out for different reasons. And this is highly contentious. And one of the things their positions that the mirror project has taken is that if this is about the child's childhood and care, all of the information in there is relevant to the individual concerned, and none of it should be redacted. But that's rarely what actually happens. 

  

David Holmes  27:11   

So, so just just to sort of carry on, so it's really preparing people for what they may receive. And John George spoke very powerfully earlier about the fact that it was lots of often lots of reports and other people's opinions. Whereas perhaps the thing that you would really like to see as photographs and, and shared memories, etc. But there is also as well as preparing people for what they may read. This is also so instructive for the current generation of everybody who works with children who are either in care or being adopted, because there is such powerful learning here about how to construct a file that someone can access in the future. And that will make a really positive difference to them. So so just, it's so powerful to think about that too, for us to always be thinking about, you know, if an adult was reading this file, 20 years in the future, what can I add to this, that would actually help? 

  

John George Nicholson  28:27   

Yeah, and I would just add, to anyone who would be getting their file, that file is not you. Or at least it's not all of you. It is, you know, people's opinions of you, versions of you. And also that that file will change over time how you see that person in the file, they're going to change as you change. And when you first get it, it can be, you know, quite cataclysmic. And it was funny, you talked about jewels earlier jewels of information, because now I look at the file, it is like it is like a treasure trove. And I feel really blessed and lucky to have that kind of document because not many people have a document quite like that, for all for all of its faults. It's an incredible, incredible document. And I don't suppose I've quite thought of it like a historical piece, but there is something quite historical about it. And there's probably other opportunities that are being lost with these files that could be that they could be looked at in a slightly different way. 

  

Rosie Anderson  29:27   

So if you were to have an ideal world, what kind of record keeping would there be for the people at the moment who are experiencing care? 

  

John George Nicholson  29:39   

I would have liked to have seen a much more kind of textured version of my life. I would have liked it to have some normality to it. I would have liked to have had some images. I mean, we're living in a different age now with phones. I would like to see little videos I'd like to see certificates of things that I'd won. I'd like Have heard my voice, when there's no excuse anymore, there's no reason why you can't capture the child's voice now, whether that is a voice message, a little video, writing something down pictures that the, you know, the technology is there, but we can have all the technology in the in the world, but if there's not the will, and it's not the awareness. So I think a lot of the time, it's not that people willfully write these types of reports, they just don't think about the person that they're writing, writing about and thinking about them now. And in 10 years and 20 years, and thinking about, you know, what makes a life, you know, not just these difficult events, what makes a life is, you know, some of the very simple things like I used to love running track, and I used to go up to the athletics track on a Thursday. You know, I remember that, but there's nothing about that. There's all sorts of other things like that, that we're never, we're never captured. And I suppose I would just want people who are capturing records just to think a bit a bit more about the landscape of a person's life in a bit more bit more detail. 

  

Rosie Anderson  31:10   

So looking forward, and being optimistic, is that some of the stuff which is going to be able to be captured by that app that you mentioned earlier? Elizabeth? 

  

Elizabeth Shepherd  31:19   

Yes, we hope so at least it will be a start. And if we can get a software company to try it out once this once it's the prototypes ready, that will be great. But there may be many other ways of doing the same job. I think the idea of developing the app was so that we could say this is the kind of thing we have in mind. Please think about this issue when you're doing child social care, recording and building social care recording systems, software systems. But But another thing I think, also is the powerful stories from the care experienced, co researchers have been incredible when we've been able to share them conferences and seminars, and almost exclusively their social workers in the Information Managers who've who've heard those stories have said I hadn't thought of that like that before. So part of it is simply making everybody who's in this system, looking after children aware of what it is like perhaps for the child or what the care experience they don't might want later in life, and just trying to understand that a bit better. And that's even that simple understanding, I think, changes professionals behaviours just a little bit and makes them more aware of trying to do something more to represent the voice of the child and the needs of the child in the file. But But I also hope that in the longer run, you know, I know John Jones goes and speaks with trainee social workers. And if we can, and we've developed work with password, which Association of Social Workers and some good practice guides, and publishing good practice guides and that kind of thing. So just trying to get the message out there. Even if we can't change the regulation and the legislation that's a long long term thing, but improving professional practice across information and social work by just raising awareness that these things matter that the person, the human that child matters, in a human way, not just in a bureaucratic way. 

  

Rosie Anderson  33:29   

That's all for now. I hope to see you next time where I will be talking to Professor's Becky Shipley and Mervyn Singer, about their race to stop intensive care units being overwhelmed with COVID patients by building a new breathing support machine. If you can't wait until then, I want to hear more about the impact of UCL research on society in the world, then why not take a listen to Made at UCL presented and produced by our students. Finally, I want to thank John George Nicholson, Professor Elizabeth Shepard and David Holmes, our guests, and of course you, our listeners. This podcast is brought to you by UCL minds, bringing together UCL knowledge, insight and expertise through events, digital content and activities that are open to everyone. 

- end -