We’re back with another episode!

What happens when you compensate people for their involvement, but doing so negatively impacts their eligibility for government benefits?

Together, we’ll unpack why paying people for their lived experience is the right thing to do, but also explore the challenges of doing this effectively without disrupting people’s benefits.

This is something we’ve been grappling with as an organisation for the last six months, and over the course of this three part mini-series we’ll be sharing everything we’ve learned along the way.

Julia: Hello and welcome to the Social Change Agency podcast. It’s been a while, but we’re back with a new three-part series on the challenges and complexities around paying for lived experience. My name is Julia and I’m the Communications Lead at the Social Change Agency and I’m joined by Rachel, our resident expert on this issue and Senior Consultant at the Social Change Agency. Throughout this mini-series, we’ll be looking at what we call payment for involvement. This has been a topic that we’ve been grappling with as an organisation for the last six months, and we wanted to share our learnings and insights so far. So, Rach, first of all, what do we mean when we talk about payment for involvement?

Rachel: So payment for involvement is in some ways, exactly what it sounds like it is when you financially remunerate someone for being involved in your work. They’re not working, they’re not delivering the work, but they form a really crucial part of it. So it can cover research participants. It can cover people in health services, patients forums and research projects. It also covers a lot of charities. Grassroots organisations and funders want to work with communities and it is always good, if you are getting someone’s precious, precious time to pay them for it. And yeah, that’s what payment for involvement is.

Julia: And I guess you touched on it there but why is it so important to pay people for their time in that way?

why are we expecting the people who are bringing their wisdom and their knowledge and their energy, and also giving up part of their day, to do it for free?

Rachel: Firstly, there’s just a fundamental equity issue. If we have the absolute privilege of working on things that are about making the world better, we’re not going to go out and facilitate a workshop, or give an interview without being paid for it. So why are we expecting the people who are bringing their wisdom and their knowledge and their energy, and also giving up part of their day, to do it for free?

There’s also a really practical issue, which is that actually people can’t do endless work for free, even people who are not earning money. Obviously, if someone is working, they’re giving you time from their work day, and I’ve known people take unpaid leave to do involvement activities.

But you know there are costs attached to doing things you wouldn’t normally do. There’s travel, there’s child care. You may have less energy or time to cook, so you spend more money on food, right? It isn’t practical to keep doing that kind of work for free indefinitely. Sooner or later it is going to start costing people money and you won’t get the engagement.

We see a lot of people in all facets of our work, charities, health services, funders, universities who want to talk. It can effectively become a part-time job and actually people, after a certain what about time, start to go well. Well, why should I be doing this? There’s obviously value in what I’m bringing, so why isn’t it being valued in the same way that the researchers and the facilitators and the staff are being valued? So it increases your engagement, it makes your relationship with your community better and it’s just the right thing to do.

Julia: In some of the work that we’ve done in the consultancy at the Social Change Agency, whenever we’ve given people honorariums for their time the responses you get and the time people are prepared to spend on it, is so much better as well.

Rachel: It just makes the work so much deeper and so much better. Assuming that, just because your thing is really important, that’s going to be the thing people prioritize is a trap that people fall into. But if you are paying people even a fairly small amount, that might just mean people prioritise it, or approach it, or just show up to it in a different way.

Julia: There’s something also around how a lot of issues that people might have lived experience of, can be quite heavy. And to ask somebody to share their personal stories and be vulnerable in that way, it’s a lot of emotional labour. It’s a way of valuing that, that labour and that experience.

why don’t we value it the same way we value learned experience or professional experience

Rachel: Everyone has lived experiences right, because we all experience things and we and we live through those experiences. [However], when we talk about lived experiences, we pretty much exclusively mean things that are complicated or difficult or potentially traumatising, and we obviously value that experience and that’s right, we should. But so why don’t we value it the same way we value learned experience or professional experience, because you can teach a person with lived experience the learned and professional stuff. You probably can’t go out and traumatize the people who just have the learned experience right? So it’s something uniquely valuable.

Julia: So what kinds of organisations might be looking to pay people in this way? You’ve sort of mentioned universities. Are there any others?

Rachel: So anyone who’s doing research. It is considered quite kind of conventional to pay research participants where you can. Health organisations and interest trusts, housing associations and local councils and people providing housing services. Charities a lot of charities who engage in service provision work do have like really really see themselves as having an obligation to make sure those services are shaped by and informed by the experiences and needs and wants of people using them. But we’ve also worked with some like very grassroots networks who are working on systems change and who are using really particular types of experiences. Some funders do it like participatory grant making, which is like one of our favourite things at The Social Change Agency. Really truly, really truly. You should pay people for that.

Julia: Anytime you’re doing co-creation or participation work, if it’s possible, then you should be paying people. So it’s a massive issue really for not just our sector but so many other sectors as well.

Julia: I know one of the things that we’ve been grappling with and digging into over the last few months has been how to do it in a way that doesn’t cause problems for people, and particularly people who receive benefits. Can you give us a sense of some of the complexities and challenges that are associated with that and the work we’ve done to try and figure out how to do that differently?

even your payments being delayed can cause quite a lot of hardship

Rachel: I was having this conversation with someone quite recently about how it’s actually really simple. But the problem is it’s really simple unless, unless, unless and there are so many things that go after that, unless, it becomes weirdly complicated, for how simple it is. In principle, you are absolutely allowed and encouraged to do involvement and to receive financial remuneration from it on benefits. Nobody doesn’t want you to do that. There are so many benefits to it, not just for the work itself and for the services, but for people who do it, because I could be very boring on the research around social participation and what a massive net good that is. So, yeah, no one in the welfare departments are trying to stop people doing it.

The issue is that there are some complexities to the welfare departments are trying to stop people doing it. The issue is that there are some complexities to the welfare system. There are specific incidences whereby receiving additional payment produces extra paperwork and it’s not always understood exactly how to do that in a way that keeps it simple and effective and stops even very small changes, particularly for people who are welfare claimants, who are on very low incomes or no income. Actually, even your payments being delayed can cause quite a lot of hardship and certainly receiving an overpayment because you’ve not recorded something properly and having to pay it back can cause an enormous amount of hardship. So in theory you’re absolutely allowed to be paid for your involvement. It is in theory.

People’s benefits are important. The most important thing is to not mess up that claim in any way

In universal credit it should most of the time (this is not welfare advice – All the legal disclaimers) be treated similarly to income. So some people have a work allowance which an amount will be ignored and then a certain percentage will be reduced from your benefits. But you’ll always be better off for doing it. It shouldn’t create any problems. It shouldn’t mess up your claim or stop it. The issue is really that people aren’t necessarily sure how to record it properly. It might be mistaken for wages when it’s not, which on some benefits that is a problem. You know, we’re in the middle of universal credit rollout, which means that some people are in a slightly difficult kind of transitional period with their welfare, and changing things if you don’t have to isn’t a great idea and also it can cause a lot of anxiety. You know people’s benefits are important. You know it’s literally like how you buy food the most important thing is to not mess up that claim in any way, and it actually just is a level of kind of distress and anxiety that we don’t want to add to, but something that might affect their benefits.

Rachel: So our work has really been around trying to focus on making sure people can build policies that are very, very clear, that are precise with the language. We’ve worked with welfare advisors, we’ve engaged government departments. We’re working with as many people as we can to make sure we understand exactly how the language needs to be so that nobody’s ever going to make a mistake and record it as earned income when it’s not, and that people understand how and when to inform generally the DWP [Department for Work and Pensions]. Most of the benefits we’ve looked at are DWP administered, but people need to know how to report it and  how to report it right and in time and in a way where the person who picks it up understands what they’re looking at and knows how to put it through the system right, so it doesn’t end up with a situation where somebody has a delayed payment or an overpayment or something else that could cause hardship.

Julia: Is it about the institutions, organisations that are doing the payment for involvement? Is it about them providing clear guidelines to participants? Or is it also about increasing awareness of it with the WDP and other organisations like like that?

Rachel: Both to some extent. I mean, it absolutely is important to have a policy as an organisation who’s doing this, that is clear, accurate and fair, and is not going to result in a situation where you have a group of participants who are working on a project and some people don’t feel like they can accept the payment because the language is off-putting, or they’re not sure how it will work.

And to have a policy that works right for your situation right? Not every organisation is the same. Not every group of participants is the same. That’s absolutely a huge part of it. There is a certain extent of making sure that the language is consistent so that you know every single person who’s working for DWP, whether they’re a work coach or service manager, knows what they’re looking at. We’re not trying to create extra work for people, we’re not trying to create obstacles. So that people who are receiving that money and who are claiming welfare understand and they know what they need to do and they know how to use the right language to describe it and where the touch points should be.

Julia: You’ve been developing a policy right to help organisations navigate this. It’ll be great to hear a little bit more about that piece of work and what you’ve learned whilst trying to create that.

we worked with them in depth to understand what they needed

Rachel: We started it off with an organization based in York who were primarily led by people with with lived experience, who were working to inform and shape the system for people with particular multiple complex needs. So we worked with them in depth to understand what they needed and developed through that some guidance that they can use and their member and partner organisations can use to create policies from that.

There was a bit early on when we were like we know people are doing this right, we know there’s brilliant policies out there. We know there’s people who found solutions that work in all kinds of contexts. So we put this call out, ‘if you have a policy or if you’re interested in learning more or following the work, sign up to this learning community’ and we’ll do some meetings and we’ll get people’s policies and have a look at them. I think we were expecting some people to join. It got quite big. I think we have over 130 signups in total and we’ve had some sessions and they’re always really well attended and we’ve had absolutely incredible input from lots of people in that community. There’s lots of people who’ve been really supportive of this.

we knew there was a place for really really accessible, usable, practical tools that help people navigate this system

Rachel: This is obviously something that everybody’s talking about and lots of people aren’t sure about, and there is information out there and it’s great. I like cannot thank and recommend NIHR National Institute Health Research enough, because they have such incredibly good and up-to-date information that they are incredibly generous with it. But it’s a lot. It’s dense and it’s that question of – it’s simple but it’s complicated and actually to fish through all those ‘unless, unless, unless’, and find out which specific circumstance your group of people is and how you’re going to make the policy that’s right for your work, is actually really time consuming and not something that everybody has the privilege of being able to devote days and days to. So we knew there was a place for really really accessible, usable, practical tools that help people navigate this system.

we’ve created a playbook which is basically a tool to create your policy

What we’ve done is we’ve taken all of that research and that knowledge that we’ve built over the course of that project and done some more research and engaged some incredibly talented welfare advisors to help us with it, and we’ve created a playbook which is basically a tool to create your policy. It walks you through what things are you going to want to include.

When we say service user involvement, what does that mean? How is that defined? When we talk about honorarium payments, what does that mean? How is it different from expenses? Can you include both? Should you include both? And particularly some of that information about how to support people through the welfare system. We’ve made the playbook, which we hope will be being released soon and should allow people to. It may even be released by the time this goes out. It should help people make a policy that works for them.

it’s not a policy you can copy and paste, because we understand that people have different needs, organisations have different needs

We’ve included some policies that we think are great, that are publicly available, but it’s not a policy you can copy and paste, because we understand that people have different needs, organisations have different needs. Organisations work within different boundaries, so it’s a guide to making your policy in your context. The other piece we’ve put together, which will be a little bit slower because we need very precise advice for this a toolkit, will be a set of resources and information to facilitate communication with job centres. So it will include language you could put in a universal credit journal entry. It will include sample letters you can adapt for your context. So it will help organisations talk to the job centre.

Part of how they do that is they have a really good open dialogue with their job centre

Some of the best organisations I know who have never not paid anyone, never had anyone had a problem, and are just brilliant. Part of how they do that is they have a really good open dialogue with their job centre and they provide you know, before anyone does anything they send a letter out saying this person is going to do this, this is how long, this is how much they’ll be paid. Here is our contact details you can talk to to us. So we’ve included some samples of how you can approach that, but also the communication for the claimant themselves to have that conversation and just a bit of guidance because, those conversations can be good and fruitful and there’s a lot of things people can get out of service user involvement. It shouldn’t be scary. It shouldn’t be scary to get paid for it.

Julia: Thank you so much Rach. I think that probably brings us to the end of episode one, but if people are interested in this issue, then definitely stay tuned for episodes two and three, where we’re going to be digging a bit deeper into our work to create the playbook for organisations looking to do payment for involvement and also speaking to some of the people we’ve worked with on this issue over the last few months. Also, as Rach mentioned, if you’re keen to learn more about payment for involvement, you can join our learning community. Thank you Rach. Until next time.