Inside a chronic illness-friendly workplace

Natasha: Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman. 

Did you catch my last episode where I talked about navigating work with chronic illness?

Pippa: During the pandemic, obviously working from home became a lot more normalised. But even in that case, somebody might think, “I’m able to work in some capacity, but all of the opportunities I’m looking at are either too many hours, or the policies aren’t going to fit around my health needs, or the organisation isn’t actively promoting that they support disabled talent.” So even just finding those opportunities to apply for in the first place is a big barrier. 

Natasha: That was good friend of the pod, Pippa Stacey talking about some of the barriers disabled and chronically ill people face when it comes to accessing flexible, meaningful employment. 

If you missed that episode, I’d highly recommend going back and giving it a listen. We discuss everything from those barriers we just heard, why employers seem so unwilling to provide accessible work opportunities – plus loads of helpful tips on how to advocate for yourself in the workplace. 

This week we’re continuing with the theme of work, but this time from the perspective of an employer. My guest is Faye Savory, Chief Sender of Hugs (AKA Managing Director) at Bear Hugs – a social enterprise which offers hug in a box gift hampers which people can order online. Faye lives with chronic illness herself, and through her business she has taken amazing steps to give opportunities to disabled and chronically ill people who want to work but haven’t been able to find flexible opportunities they can manage alongside their conditions. 

As you’ll hear, it was Faye’s own experiences that led her to set up Bear Hugs… 

Faye: I started BearHugs about seven years ago now. BearHugs is a social enterprise, which offers hug in a box gift hampers which people can order online and send through the post. But we also offer accessible jobs for people who have got energy limiting conditions, and we offer a hug nomination scheme, where for every 50 gifts that we sell, we offer one up to somebody who is affected by a long term health condition or disability. We also now have a gift shop and a co-working space as well, here in Sheffield where we’re based. So, that is basically what I spend a lot of my time doing. But you can also find me, if I’ve got any energy left at all, reading a book or cuddled up with my cairn terrier dog, Teddy.

Natasha: What led you to setting up BearHugs in the first place?

Faye: In my early twenties, well, I used to be a speech and language therapist, and I just started a new job up on the Isle of Lewis in Scotland, but I started to notice weird things happening with my body, and they just kept getting progressively weirder, until the point where it was quite debilitating. I had to resign from my job. I was unemployed, very unwell, and for a long time work was the furthest thing from my mind. But I was very fortunate in that I gradually started to see improvements here and there, where I had pockets of time where I felt like I could do something, and I really wanted to work. But when I was looking, jobs didn’t exist that fitted what I needed to be able to do that. So, I thought, okay, what can I do from home myself? So, I thought about starting a business that I could work on around my health.

When I was thinking about that, I just kept coming back to thinking about a care package that I’d received from my friend, Sophia. She was exceptionally kind and she sent me this beautiful care package. It meant so much to me, and I thought, Oh, I wonder if there’s something in that. I wonder if I could do something where I could help other people do what Sophia did for me. That’s where the idea came from. I just gradually started to put together my own care packages, that I listed for sale on Etsy. When they sold, I reinvested the money, made some more, and I just kept doing that and it grew from there.

Natasha: I think the experience of being chronically ill or having a long term condition and wanting to find ways to work, because you might be able to work a few hours a week, or a few days a week, or a few hours a day or whatever that looks like, is quite common in the community. But then just knowing how to find those roles or whether those roles exist at all, and especially seven years ago for you, 10 years ago for me, that was a lot harder than it is today. There was a lot less understanding than there has been today, especially since the pandemic. I think you have a really interesting experience because you completely just decided to go and try and build something for yourself.

So, there’s two reasons that I wanted to talk to you today because there’s the entrepreneurship side of it, and what does it take to build a business with chronic illness? But then also, you’re doing a lot of things for people with chronic illness through your business. So, I’d love to start by talking about the process of becoming an entrepreneur, and how you were able to build your company from an Etsy business into what it is today. But also how you were able to balance that with a chronic illness, because I don’t have a business business, I suppose I have a creative business online and there’s pros and cons to working for yourself. There’s a lot of things to balance.

Faye: Oh, gosh. It’s been really hard. It’s been a case of trial and error at every single stage, I think. I felt like there wasn’t really a blueprint to follow. There’s all kinds of advice around starting a business, there’s not a huge amount of advice around starting a business with a chronic illness. So, I think for me it was a lot of trial and error. It was try something, see if it… In the same way in my personal life, try something, see how my body got on, scale it back, try again maybe smaller and do it that way. So, that’s what it’s been like right from the beginning.

I think the biggest thing has been learning to put expectations in place at every stage. Expectations for myself, making sure that they’re more realistic because I am really prone to saying, “Right, I’m going to do all of the things,” and that’s just… Even if you are a healthy person, that’s not possible. But also, really importantly, expectations of others. If you are communicating those things really clearly from the outset, it’s much easier to build up gradually, and there’s not as much accidental pushing further than you should. So, you can do the same process of building a business, it just might be at a slightly slower pace, or you might have to work smarter and find workarounds which other people maybe wouldn’t have had to have done.

Natasha: Can you give some specific examples of that?

Faye: So, for me, I think the very first thing I did when I started BearHugs was I got in touch with the Prince’s Trust, and I signed up for their Exploring Enterprise course, where they help you write a business plan. The expectation of that course was that you attend for four days, and at the end of those four days you can then be matched with a mentor, and maybe get some funding. For me, attending four days on the trot of a course in person was not doable. I actually tried the first day, without saying, “I don’t think I can do this whole thing,” and then I got to the end of it, and I was like, this isn’t going to work. So, then had a conversation with the people that were running the course, explained, and then was able to change it so that…

They run that course once a month. The next time that course ran, I then did a bit of the next day, and then when it ran again, a bit more. But it was changing that expectation on myself, that I must do those four days all in one go, but also speaking to the other people involved and saying, “This would be what would be more realistic for me,” that kind of thing right at the beginning. But even now, I have 18 employees and I am a people pleaser by nature, so I want to be available and responsive all of the time, but that’s not doable. So, it’s just letting people know, I will get back to you, when I can, but I can’t do it right now. Just having those expectations in place.

Natasha: How did you navigate that when you have a literal product to send out, because people have expectations, they place orders, they might be for special occasions? How did you take those lessons that you learned early on and applied them to having a literal product?

Faye: So, for me, it was about, in the copy, wherever those products were listing, putting realistic timescales for dispatch. So, it might be that actually, rather than a two day dispatch, it was a five day dispatch. For me as well, it was asking for help where I needed it. So, say it was getting close to that five day dispatch period, and I’m thinking, I’m not going to be able to do that, asking for help from people around me. So, Jared, my husband, he’s been involved right from the beginning, helping with those things. I find it quite difficult to ask for help, but it’s been essential. The first thing is just setting the expectations with a bit of a buffer in, and that might be extending the lead time on it.

Natasha: Aside from the expectations and trying not to people please and being kind to yourself and flexibly creative with how you’re working, your business grew from it just being a one man band on Etsy, into a company with 18 people, which is amazing. Running a business is so much more than just having a product, right? There’s so many different aspects to it.

How did you, especially at the beginning before you had the support of a team, go about sourcing, shipping, marketing, financing, all of those things, how did you start thinking about all of those things and working out how to allocate your time, and most importantly I suppose, your energy?

Faye: The course that I did with the Prince’s Trust was actually incredibly helpful, because it gave a structure. So, as part of it, you come away with this workbook, and you write the business plan as part of it, and it’s like step one, do your product, your market research, what are people doing out there? Look at that and then start the sourcing. So, really what it helped me do was chunk it into those different things, in a sequential order that made sense. So, I just followed that blueprint through, but just did it in chunks a bit at a time. Obviously they start to overlap, and that is what I found exceptionally challenging for a long time. But I think still the key for me is just chunking. Okay, I’m going to break that down. I can’t do all of those things at once. Let’s do that first bit first, and then maybe we then have to move over to another area, and we do the first section. But just keeping an eye on what those different chunks are and doing them in the most logical order that I can.

Natasha: One of the reasons I was really excited to talk to you today, is that you have made BearHugs an inclusive employer. You have worked really hard to make sure that you are offering opportunities to other people living with chronic illnesses.

I’d love to talk to you about how you started thinking about that, and how you put that in place, because I think that’s something that a lot of businesses can learn, because I think a lot of organisations don’t know how to go about thinking a bit differently about employment. I’d love to see what we can learn from you, that hopefully can help other people who are in a similar situation.

Faye: Before I talk about it though, I would like to say, I know that we don’t have it all covered. There are always, always things that we could be doing to improve what we’re doing, in terms of access, and there’ll be things that we are missing now that we could do in future. So, the things that we’re doing, I’m really proud of, but I don’t think it’s finite. I think that there’s a lot more that we could do. So, how I started thinking about it was, from the beginning I felt so frustrated, that at that time, like you said, it is easier now, slightly easier to find opportunities. There’s still not enough. But at the time I found it so frustrating that I couldn’t see anything out there that felt like a good fit for me to be able to do. I knew that I wanted there to be more opportunities.

So, right from the outset, I had this vague notion that I wanted, if I’m building something, I want it to have opportunities as part of it going forward. When I started, I had absolutely no clue how to do that, so it’s been a very gradual process of learn, reflect, implement, and change as we go. But I had that inkling. Now, when it first came to needing support within BearHugs and looking to employ people, the difficulty I had was that the biggest thing that I needed help with was the physical side of packing gift boxes. I needed it to be within very set time periods, so that we could be meeting those expectations that we have from our customers around delivery, etc. What I wanted was to advertise a job that was accessible, and could be a good fit, but I didn’t know how to do that.

So, I actually paused on that. Then the first job that I advertised that I knew had the potential for a structure that I could make really accessible, at the time it was called a Hug Donations Assistant, and that could be worked remotely, it could be worked flexibly. I could see how that structure could work for it.

So, Georgina joined BearHugs as our first employee in that role, and she was able to design the boxes that we would send to our donation recipients, from home, at her own pace. Basically, since we advertised that role for Georgina, ever since then we’ve been trying to learn what’s happened from those roles actually existing, and then tweak them, change them, improve them before we offer the next set. So, we are now at the point where over 50% of the team works remotely and flexibly on a flexible contract with BearHugs.

The ways that we try to make those roles accessible really vary. A lot of it comes down to the structure of it.

We are not a charity. Roles for people with disability, it’s not charity for people to have jobs. It’s about them being meaningful jobs with purpose, that have the same expectations, and in some place professional boundaries, that roles in other organisations would have, but they just have a bit more flexibility built in. So, the roles that we have now, they might be some really flexible shift based roles. So, for example, our customer service team, we have three or four shifts in a day, and they’re one hour shifts. So, it’s just one hour of work, but they can be completed within a wider window. So, for example, we have a morning shift which can be completed anytime between 5:00 AM and 9:00 AM. We have a midday shift that can be completed between 11 and half two, and then an afternoon shift, which again has a window.

That works for some people, because they can sign up for the hours that work for them, or they can drop those shifts and swap them with other people if they don’t. So, the structure there is those flexible shifts, but also having the team that has flexibility within it, so that if one person isn’t able to do it, someone else can pick it up and there’s no expectation. If you are not feeling up to it on that day that you do it, it’s fine. We’ve got buffers to build that in. So, that’s one way.

Another way is our digital marketing. At the moment, we’ve taken a task based approach. So, this is actually an area that we’re still working on. I don’t think we’ve got it nailed yet, I think that there’s still ways we can improve it, but we have a list of tasks that need to be completed. People who were in the task based model can sign up for those tasks, complete them at their own pace.

There will be a set deadline for that task, but there’s opportunity for communication around it, and if you are not able to work to them. But what we ask is that everybody tries to build in some buffer time, before they pick up those tasks, and then they get paid for the hours that they’ve worked on those at the end. Then we also have other roles which are slightly more flexible. So, like Georgina’s role, she’s now Hug Nominations Manager at BearHugs, which is so cool. I love that. But she just works dependent on what work needs to be done, she’ll just submit to me the number of hours she’s worked at the end of the month, and we pay for that. So, that’s the kind of structure. But there’s also a lot of other stuff that’s involved, which I think is actually really simple, but makes a big difference.

So, what’s really, really, really important to me, is that we have a culture where it’s safe and normalised to talk about access needs. I think the biggest thing I find when people come to work at BearHugs is confidence issues. When you have been in a world where you are made to feel inconvenient for having access needs, you have maybe not been able to maintain your job previously because of access needs, it can really knock you. Then it can make you nervous to talk about the needs that you have, which are totally reasonable and not a big deal. It’s very easy to offer the support to make sure that those needs are met. But I think the biggest thing is making sure it feels safe to have those conversations.

Natasha: How do you go about doing that?

Faye: We have meetings within the team, people always have the opportunity with their line manager, be that me or one of our other managers, for what we call catch up cuppas. They are check-ins basically with your manager to see how things are going. We have a structure for those catch ups when we chat. So, it’ll be what’s going well, what could be going better, anything we can support you with. But there’s always, always on the agenda for that meeting, no matter what that person’s access needs, whether they’ve declared any or not, there’s always the question of is there anything BearHugs could be doing to support you at the moment, in terms of access? It’s always there. It’s just the norm. We understand things change. It might have been that you didn’t need something before, you might need something now, it’s just there.

Having that has really helped people have the space to talk about it. Another way is that I like to set the tone right from the beginning. So, when somebody applies for a job at Bear Hugs as part of the application process, we make sure that we try to give lots of space for opportunity to talk about access needs if people would like to. When we offer interviews, we try to, at the beginning of that interview, offer things that we’ve done in the past that might have helped other people access that interview. Before the call, offer opportunities to ask us if there’s anything in advance that they’d like to know. So, set that tone right from the very beginning, and then it’s just something that I hope that all of our team members feel it’s an okay thing to talk about, and therefore it’s easier to then support.

Natasha: I was going to ask you, as you were talking, I was going to ask you about how people can know what to ask for, because I think that’s one of the big things, especially if you are isolated from work and you haven’t been given the opportunity to think about access adjustments or anything like that, it’s very hard for people to even know what kind of support is out there, and what kind of things could help them. Because if they’ve had no experience of that, they just don’t know. So, aside from examples beforehand, which I think is a great idea, is there anything else that you do to help people start thinking about what could help them, and how you offer that suggestion and support to people?

Faye: There’s a million different things that this could be. So, I’ll hone in on some examples. But that’s not to say that it’s like, that’s the extent of it. So, something that we offer at the beginning of every call that we have is, if you’d like the opportunity to take a break at any point, we can choose a set time for it, or we can have a signal that we agree at the beginning of the meeting, that just means I can take a break. That’s just standard practice as part of every call within BearHugs. I’ve found that not everybody felt comfortable asking for those things, but when you offer it up people are like, “Ah, okay. Yeah, I’ll take that. That sounds like it could be useful.” So, that’s one thing. Another thing is that when people join the team, we send out a DSE, which is basically looking at your working setup.

So, it might be the position of your laptop, how your arms are positioned. When you look at the standardised DSE assessment, it is very much based on the fact that you’re going to be sat at a desk, you’re going to have your feet on the floor and you’re going to be sat in an office chair. Now, for a lot of people, that’s not the most accessible way to work. For some people it’s in bed. It might be that they need their laptop raised on a tray, but that’s not standard protocol to offer that. So, when we send out the DSE assessment, we send it also with the caveat and suggestions of what we’ve done in the past, of different setups that you could consider. So, that might be a tray on your bed.

Natasha: Have you found that the 50% of your staff who aren’t chronically ill have also benefited from these things that you’ve put in place?

Faye: 100%. Yeah. I think, absolutely. Who doesn’t need a rest sometimes? Who doesn’t think clearer after they’ve had a breather to come back, take some time away, and then start again? I think that the culture in the team is so beautiful, because of that mix that we have. People are incredibly empathetic and supportive of one another. I think that the open conversations we have around access, allow people to be open about other things. There’s no expectation that people are, but the vulnerability that maybe people don’t have in other organisations, really builds that trust among team members. So, I think, yeah. That’s just a small way I can see the knock on effect of it.

Natasha: One of the things that you talked about earlier was how flexibility has been implemented throughout the business. How was it setting this up over the years? Were there challenges with that? What happens if a bunch of people are unwell at the same time? You might not have somebody to do a role that needs to be done, but obviously you want to be able to support your team, how do you go about navigating some of those challenges?

Faye: I have not done that right at every point. I have learnt a lot along the way, but what used to happen is that I’d buffer it all of the time, which didn’t work for my health. So, that’s what happened initially. I was like, “Uh oh.” Well, of course it was never a question for me that anybody should work if they’re not feeling up to working. That’s a no brainer. Don’t do that.

Natasha: But you didn’t do that for yourself?

Faye: Absolutely not. I was shocking, and I still am occasionally. But the biggest thing for me now, is having the people around me to pull me up when I am doing that, and using the support network around me. Some of that’s official, some of that is unofficial. So, that might be having Sian and Georgina, here at BearHugs, to say, “Have you got any capacity? What wiggle room have you got within your roles to take this on?” A lot of the team within BearHugs actually know about multiple areas of BearHugs. They don’t just know their role, and that gives us that flexibility of, if we are dropping in one area, we’ve got support elsewhere that we can use. So, that is a big thing, but also using the unofficial around me as well. Jared is now actually an employee of BearHugs, but my husband Jared, using him, using not the word. Asking very nicely for help, if I need it, and not trying to take it all on myself.

Natasha: What are some of the other challenges that you came across over the years?

Faye: One of the big ones is resources. What it comes down to too often is money. I would really love to do all of the things that I could see would be really beneficial for the team, really beneficial for BearHugs. Sometimes that might be down to… I worry that sometimes if people apply for a job at BearHugs, it’s on the assumption that they have access to a laptop, for example. BearHugs at the moment, doesn’t have the budget to buy a laptop for every employee. We’re a small business. But I know that that could be a deterrent for some people, and I don’t have the funds for it right now. Longer term, that’s my aim to make sure that as part and parcel it’s there. But that’s something I could see but couldn’t do anything about. It came down to money. A big one, something that we’ve done a little bit over the last year, that’s alongside the work, is having the opportunity for accessible social things to go alongside it.

I think it’s really important for team morale to have those opportunities. I’ve got so many ideas for them. We would love to do some crafting socials, that could be done in chunks for people who maybe weren’t able to attend the whole thing. I’d like to have book groups for people who were able to engage with that, but lots of variety within those, so that no matter what people’s circumstances are, there might be something that they can engage with. I think that that side of it is really, really, important. We know that people who have got long term health conditions often feel isolated. I would love to be doing more within what we’re doing to build on that. In terms of, obviously we’re an organization with employees, but we also offer a service. I want to make sure that the service that we’re offering is as accessible and as inclusive as it possibly can be. One of the big things I’d love to work on is our website. How can we improve the access of our website? So, that’s a big one, that’s on my radar at the moment as a big project that I’d like to work on when we can.

Natasha: Okay. Tell me if I’m making this up. You do advise other companies or am I imagining this?

Faye: So, we would love to do more of it. We’d love to… We are hoping, hoping as soon as we can, to have a report which talks about what we do, in terms of the models of employment. That’s the shift based model, the task based, and the really boring stuff really, the policies and the contracts that we offer to try and make the roles as accessible and as inclusive as possible, and make sure that people have the same rights and opportunities, regardless of what type of contract that they have to be on.

So, we want to pull together all of that with some case studies from within the team, and start sharing those more broadly. If anybody reaches out to us, we are always happy to chat about those things. So, if anybody listening to this, we’d like to chat about it, we would love the opportunity to tell people about it. And also be challenged on it. If people hear us say something like, “Oh, but what about this? How does this work?” We’re all for that. It’s really important. So, we’d like to do more of it, but we’re doing little bits here and there at the moment when people ask us.

Natasha: I’m curious how the task based model and some of the more flexible options that you have work, in terms of payment for people. Because I think one of the things that is the most challenging is, and I guess it’s the difference between being a freelancer or being employed, is that when you are employed and you’re ill, you take sick leave, you’re still paid for at least a chunk of that sick leave. How does that work in terms of payment for people if their hours have to fluctuate and they need to have a stable income? How do you navigate that?

Faye: It’s still really hard. We’ve not got it totally nailed. I’ve got an incremental plan to improve it as best I can. So, for those models at the moment they are still zero hour contracts, because the contract options that exist are so limited for flexibility in that way. So, what happens is that if you are an employee on either of those models, every month you have a set amount of standing pay, which is just your being an employee pay. So, that is to check your emails. To keep up we use Slack for communicating with each other, to keep on top of that. So, if you are working, you get that pay as standard. If you are on one of the shift based models, you get paid for the shifts that you work. Then what’s standard practice on a zero hours contract is, rather than you have consistent pay every month, you receive a holiday allowance as part that’s at that pay.

So, say you work for 10 hours, you’ll receive, I think it’s the standard, it’s maybe 12% on top for holiday pay. The idea is that you accrue that for every hour that you work, and it’s not ideal at all, but you would then have received extra pay, which accounts for the times when you are not working. Now, at BearHugs, I don’t think the standard is enough on that, and it doesn’t cover sick pay. So, what we have done is we’ve increased the amount that people accrue for every hour that they work. So, at BearHugs at the moment, for every hour that you work, you also receive an additional 16% on top of that, which is hopefully a small something to account for if you then are not able to work, that you’ve received extra on the times when you have worked.

It’s not ideal, but it’s something. What I would like to do if people are continuing to use those zero contracts, is to just increase that amount so that it’s totally in line with what we can offer if someone’s on a fixed term contract. So, you are receiving the exact percentage. So, already it’s standard, that the holiday pay percentage you receive on top of your hours is exactly the same as if you were on a fixed contract with BearHugs. What I’d like is, we are doing it step by step, because I’d like the sick pay percentage that you receive for every hour that you work, to be the same in a fixed term contract.

Natasha: What have been the biggest lessons that you’ve learned over these last seven years, and what are the biggest messages that you’d like to get out to employers, to businesses? The types of things that you had wished existed when you were looking for work?

Faye: It’s the smallest changes that make the biggest difference. Just asking at the beginning of a call, if someone would like to take a break, costs nothing, is not a big deal. But the feedback that I have from employees on things like that is that it makes all of the difference about how they feel that they can engage with that meeting. It means that they’re more part of it, right from the beginning. Because they’re like, “It’s okay. I’m going to have a break if I need one.” It’s the smallest changes that can make the difference.

It can be just like you might have a shift based model already, but if you just add a little bit more flexibility onto those shifts, it probably doesn’t impact on business. It probably still works, but it means that you’re getting more out of the people, and they are getting so much more out of it themselves. They’re feeling the reward of it, because it works better for them. So, it’s the small changes that make the biggest difference. I think it’s not costly, it doesn’t have to be huge and shiny. It’s the small things that make the difference.

Natasha: A big thank you to Faye for joining me on the podcast. It’s amazing to hear about all the hard work she’s doing to make her business as accessible and inclusive as it can be – I really hope other companies take note! Funnily enough, when we pressed ‘stop’ on the recording of this episode I actually said “ahh I want to come and work for you now!” 

I’ll of course leave a link to BearHugs in the episode notes if you want to check out the website. 

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Aaand that’s all from me. Thanks so much for joining me in The Rest Room. Ta ta for now!