Hidden disabilities uncovered podcast

Paul Deemer

Welcome everybody to this podcast where we're going to explore the subject of hidden disabilities. My name is Paul Deemer and I am the head of diversity and inclusion at NHS Employers. NHS Employers are delighted to be producing this podcast, which will be part of hashtag #EQW24, Equality, Diversity and Human Rights Week 2024. 

#EQW2024 is a week long platform for health and care organisations across England to highlight and showcase their work towards creating a fairer and more inclusive NHS for both patients and staff. And I'm thrilled today to be joined by Sandi Wassmer chief executive of enei the Employers Network for Equality and Inclusion and also Pauline Hogarth, who is a policy manager at the North East Ambulance Service NHS Foundation (NEAS) Trust, but also chair of their disabled staff network, ABLE at NEAS and deputy chair of the National Ambulance Disability Network. So welcome to both of you.

Sandi Wassmer

Thank you Paul.

Pauline Hogarth

Thank you. Nice to be here.

Paul Deemer

Lovely to have you both. So can we begin please with Pauline. And Pauline, I wonder whether you could perhaps talk to us about what hidden disabilities are and why it's so important for us to talk about them today.

Pauline Hogarth

Yes, certainly. Um, hidden disabilities. You don't see them as well as you would see for other disabilities, but also means that the person who has them probably isn't also aware. And it's not uncommon. What we're seeing a lot at the minute in our trust is we're having a lot of staff that are getting diagnoses later in life, which throws up its own challenges, of course.

They're a lot more common than what people would realise in the UK. We say it's about one in five people that have a disability, 80 per cent of whom have a hidden disability, and that's quite a lot. So that includes things like diabetes, neurodiversity, visual or hearing impairments. And I suppose the other risk with that is it’s not outwardly obvious, so you can face a lot of discrimination for something that impacts you every single day of your life. So, from my perspective, I'm on the autistic spectrum. It's not immediately obvious. I didn't know I had it. I've only had my diagnosis seven years and generally I cope quite well.

I didn't know I had it, like I say, but now what I'm learning is if I'm in a big environment like an airport or a concert or a supermarket, places that you just can't avoid, I am more likely to get a bit overwhelmed and get a bit flustered and I'll just struggle in that environment. I'm still figuring it out really. So what I have to do is I have to ask for assistance to get through the airport. Well, that's really bizarre because they look at me as if to say, well, what's wrong with you? And if I'm in a group of people who are say, for example, in a wheelchair. They'll talk to me instead of the people in the wheelchair, assuming I'm their carer.

So, it can leave you feeling actually quite uncomfortable, and sometimes feel like you have to explain or almost justify what your disability is. So yeah, it can be a really mixed bag, with its challenges. Nonetheless, we use that, don't we, to help shape the lives for the people for the better.

Paul Deemer

We do. Thank you, Pauline. And thank you for those examples as well. That really helps people to visualise and imagine what it's like to have a hidden disability. So that's really, really useful. Thank you. Sandy, welcome again. And within that context, could you perhaps talk to us about what your role as a chief executive is like as somebody who has a disability and also what you think the role of chief executives and others in leadership roles is in terms of addressing the issue of hidden disabilities?

Sandi Wassmer

Well, interestingly enough, I'm blind and I have ADHD, and being blind can be hidden and it cannot be hidden. So, because I'm a long cane user, if I'm out and about in the world, you see my cane, So, okay, that's a sign that I'm blind. But today, you know, coming into this podcast, I'm using my computer. And so, you know, you wouldn't necessarily know that I was blind. Having ADHD is something different. Like Pauline, I didn't get diagnosed, until I was well into my working life. I didn't really understand what it was until when I got the diagnosis. It was, it was super helpful, but you know, being a chief executive with these disabilities, it's interesting. I think, particularly with ADHD, it's like I'm coming out every time I meet a new person. So, it's how do you navigate that. How do you let people know, you know. So, if they see me with my cane, that's fine. But particularly with the ADHD, it's how I communicate, it's how I consume information, it's how I understand the world around me and having to explain that and having to disclose that, particularly in certain situations, can be quite stressful.

You're thinking, okay, so do I need to tell this person? Is it relevant? Do I need to tell this person now? Do I need to tell this person later? And you know, it can be a bit difficult. You sort of have to navigate that every time you meet someone new. So I think that's one thing, but I think at the moment I'm talking so much about my ADHD, I think people are now sort of knowing that I have ADHD, which is really helpful because I don't have to go through that process. 

But you know, I think that certainly being neurodiverse, it's definitely made me a better leader. It's definitely made me more empathetic, more understanding. I think I was already an empath anyway, as a person, but it's, you know, the experience that I've been through and the resilience I've had to build has just definitely stretched me in one way. It's stretched me. So, you know, they say if you're stretched one way in pain, you're stretched the other way in compassion. I certainly think it's made me much, much, much more open hearted. And also understanding my ADHD and being able to manage it and not having to deal with the overwhelming emotions and certain things that people with ADHD experience. So, I'm pretty much a stress fearing person with ADHD now because I'm so open about it and everyone around me is so supportive. I think that I'm able to be just much more open, I mean, people with ADHD and a lot of neurodiverse people are pretty honest anyhow, so I've got a lot of qualities that give me strength as a leader.

And it's I think also interesting because people don't expect someone with ADHD to be a CEO or someone who's blind to be a CEO or any of these things. So, I think that I surprise and educate people every day. So being a leader, being CEO and having this incredibly privileged position to run such a fantastic organisation and to be able to say to people, this is possible for you too. I think it's really important. I think that's really powerful. And to other Chief Executives, I mean, people are just people. We're all human beings, we're all individuals, and we all deserve a fair shot. And please don't make any assumptions about what anyone with a disability is or isn't capable of.

We're all completely different and treat people like individuals. Because most people in the workplace, most people who want to be in the workplace, have plenty to offer. And we're all different, we all have our strengths, we all have the areas where we need to develop the things we're not as good at as other people at and vice versa.

So just treat people like individuals and be completely open minded and open hearted. To people, anyone in your workforce, because anything is possible. We're all fantastic human beings. And I think it's just having that totally open approach as a leader to not putting people in pigeon holes. So not putting people with ADHD saying, well, you've got ADHD, so therefore you can be an accountant or software developer, but you can't be a leader.

That's not true. So, it's really just being totally open minded about it and looking at your workforce as a bunch of super talented people who have lots of different things to offer. So, you know everyone who works in the DEI space these days knows that diversity of thinking, diversity of views and approaches is really wonderful. So having as diverse a workforce as possible and people with disabilities, being a part of that is absolutely essential.

Paul Deemer

Thank you, Sandy. It's lovely to hear and wonderful to hear and I think everybody's probably like me sitting here thinking, I wish you were my chief executive and maybe one day, you know, every chief executive will be like you and let's hope they are. But I think the important point that you made was that you feel more comfortable now being able to talk about your hidden disability and I hope, as you said, that engenders others within your organisation, but also wider as well because your organisation interacts with lots of other organisations across the industry. And let's hope that just spreads across.

Sandi Wassmer

Well, thank you. I mean, I will say it's absolutely liberating. I was really bound by it. It was something, it was an internal matter that I just tried to soldier on myself. And now that I'm sort of out and open about it, it's absolutely liberating and it just causes me very little stress and I was very stressed about it before.

So it makes all the difference to be able to say to somebody, look, I've got ADHD. So, you know, I consume information differently. Can you just explain that again? And just not feeling ashamed about it. I think shame is a really key part with lots of neurodiverse people. 

Lots of people with hidden disabilities, they just, they don't want to say because they don't want to be judged. So it's really important to be in a non-judgmental and psychologically safe environment where you can feel open about that. 

And I guess for me at enei, that's the kind of environment I've created. 

Paul Deemer

So Sandy, could you talk to us perhaps about the lack of diversity on boards? This is a problem that we've encountered across the health sector, but I know it's one that occurs across industry.

Sandi Wassmer

Yes, I think, it's an ongoing issue. I mean, particularly around disabilities, I think there was a study done a few years ago, which said that of the FTSE 100 companies, not a single person on the boards or senior leadership C-suite teams had disclosed a disability, and so, you know, particularly with disabilities, there's a long way to go. I think that boards, used to consist of a particular type of person. And that is across protected characteristics, but also across a socio-economic background; you know, where you went to school, where you speak, what part of the country you came from, all of these things. So I think that, you know, there was a particular cookie cutter approach to boards, and we're definitely breaking through that with gender and with ethnicity and starting with disability now.

But, you know, I think it just takes time as, as the societal change as the work we all do around DEI continues to take a foothold, I think that we will in due course see boards diversifying but I think we've got a very long way to go.

Paul Deemer

Thank you, Sandy.

I think given all that both of you said so far, what do you think employers can do better to support staff with hidden disabilities? And do you have any examples of where this has worked well? So, I'm going to ask Pauline to think about this first.

So, what can employers do better to support staff with hidden disabilities? And do you have any examples of how that's worked well?

Pauline Hogarth

Sure. Yeah. I think as an employer, the first thing that you need to remember is you're not the expert. You're not expected to have the answers. And I think a lot of managers really worry about that and feel like they have to bring an immediate solution. ACAS will say you're on a journey of discovery.

And that's, for me, the key thing that you need to remember. You're not expected to have the answers. The person who experiences that disability or whatever it is, also won't have the answers and that's also okay. You go on that journey with them. Secondly, remember that you might have staff with the same disability, but they'll all have different needs.

So actually, what you need to look at is the process that you've gone through to try and get as much information as possible to look at what adjustments you can put in the workplace. It's almost not so much about what the decision or the end point is, it's about the journey that you go through and how it's been reasonable.

And how you've come about that decision. Sometimes adjustments aren't reasonable and that's okay, but you have to be able to show how you've got to that point. Have you followed fair and reasonable process? Those words will keep coming up. Has it been fair? Has it been reasonable? If you're going to take work off of somebody and give it to other people in the team, is it reasonable for them?

Cause that's all part and parcel of what you need to think about. Look at what options you've exhausted. Have you done everything in your gift to help support that person and think, if you remove something or reduce something, has it removed or reduced the disadvantage on that person? What would happen if you didn't do it?

And I think when you start to think like that, you will understand a bit more about, it's not so much what you do, it's how you make that person feel. So Sandy mentioned before about feeling psychologically safe. You've got to create that environment so somebody feels that it's okay to come to you with what is actually quite personal information, and is typically very private information, and can be quite painful sometimes to share.

So, as long as you're using that fair and reasonable approach, you're creating that psychological safe space, you'll take that a long way.

Paul Deemer

Brilliant. So, I hear that your organisation is doing some work around neurodiversity. Could you perhaps talk to us about that?

Pauline Hogarth

Yeah, certainly. So, our staff network was approached by one of the managers in the emergency operations centre. A brilliant manager who had said “look, we're starting to see an increase of staff with a neurodiversity. So, autism, dyslexia, ADHD. Our managers really want to get this right, but they're a little bit unsure about how to approach conversations, how to deliver feedback.”

And they just don't want to misstep because they don't have a lot of information. And how often do you hear, if you've got a problem, speak to your manager. Well, with the utmost of respect, they're very, very clever people, but they don't have all the answers. So the staff network said, yeah, not a problem. We can do something. 

So, we sat down with the managers and said; Okay, let's just be really clear about what you're asking us here. What is the problem? What are the themes that we're hearing? So once we'd captured that, the manager in question, Judith and I are part of the health and wellbeing advisory group who were very kind and give us some money to do something about that.

So, we reached out to an external neurodiversity coach. Cause remember, we're not experts. We don't have all the answers. We've brought in a bit of that expertise. She spent some time in our EOC facilities. She spoke to the staff, the managers, she's looked at some of our processes, our paperwork, and she's gone away and she's devised a bespoke modular training programme that looks at raising awareness, knowledge, and skills in our managers.

So they understand how to do things perhaps differently, and then they're going to have some, what we've called supervision development. So they'll bring some examples with them into the meeting with the neurodiversity coach and they'll say, this is what we think is best practice or this is maybe where I'm struggling. What do I do? And we do that as a team with a view to then applying the learning that they've received, and with the view to then being a lot more confident about providing the support and the care that our staff need. But interestingly, a lot of what they will learn won't just help people with a neurodiversity. Our hope, our dream is that it will remove barriers for everybody. So, what we're seeing, if we can do that, is some absolutely massive benefits because the staff feel heard, they feel listened to, we know our managers now feel it's okay to not have the answers. We can ask the questions and we'll get the support that we need.

We're getting a chance to upskill our managers in these areas, which is only going to go on to benefit everybody in the long term. And I think it just makes the environment a lot more equitable, things like looking at how we provide feedback to our staff. We're going to look at something called the clean feedback model, which is a different way of approaching questions in our call audits.

So actually, that's going to benefit everybody, not just the neurodiverse staff. So, as I always say, if you look to get things right for your staff with a disability, you'll get things right for everyone. 

Paul Deemer

Brilliant.

And Sandi, for you, as I said earlier, your organisation works with a whole range of organisations across the UK, and you're sort of an improvement organisation. So, what examples do you have of where you've seen a good approach, to working with hidden disabilities and supporting employees with hidden disabilities?

Sandi Wassmer

Well, I’m going to build on what Pauline said, because she said some really interesting things that I think need a bit of reinforcement. So first of all it’s a journey. And it’s a journey with an individual, it’s not a journey with a statistic, it’s not a journey with a disability, it’s a journey with a person. And so, I think it's really important that you work with that person and understand. I think that a lot of employers, you know, they worry about getting it right, getting it right is just working with and being on a journey of discovery and openness with somebody. So, you know, you're not going to have all the answers and you're not expected to, you're expected to start a conversation and continue that conversation until the solution is found together. I think that's also, you know, Pauline said that, and I think it's really important. 

But one of the things I also think is really important is a lot of disabled people are asked by their employers, what reasonable adjustment do you want? And they're like, I don't have a clue, I just got diagnosed yesterday. So I think a lot of people, you know, it needs to be understood that there's lots of people who can support you and in getting to that understanding of actually what you need, what's available.

So, I think, you know, using places like access to work or, organisations that support people with a specific disability, so it's really important to be reaching out and making sure you get all of the information that you need as an employer. And also, you know, reasonable adjustments have the other counterpart to that, which is the concept of disproportionate burden.

So, you know, an employee may think something's reasonable, but if your employer is encumbered by disproportionate burden by providing that adjustment that may not be suitable for the employer. So, it's always about, you know, what the organisation does, the size, the structure of the team and all those things.

So again, it's a negotiation. You may find that a lot of adjustments are really straightforward and cost nothing or some are really expensive. So again, it's, a journey of discovery, but I think all of that needs to sit within the context of the fact that every person you employ is a human being and every person in your employment has the same rights to be happy, thrive, be psychologically safe, feel a sense of belonging, be included and all of those things.

So, it's what does each individual in your organisation need to thrive. Almost whether or not they have a disability or any other type of protected characteristic, and it's making sure that the opportunities for people with hidden disabilities are equitable, and so that everybody has those same opportunities to thrive, to, you know, to stay in a job, if that's the job they want to stay in, to develop, to progress, if that's what they want, and so that everybody has all of those same opportunities within an organisation and as part of providing support to someone with a hidden disability that it’s fair and equitable.

I think I've seen lots of different approaches, but the best ones are where there's a psychologically safe environment and inclusive culture and the opportunity for people to go on this journey of discovery together. I think those are the most successful, and also where people are treated like the individual, wonderful human beings they are, and that they're imperfect, infallible and may not know exactly. And you may try something and it may not work, and that you just carry on. So, I think culture really plays an important part here.

Paul Deemer

Fantastic. I think also, Sandy, you'd agree as well that data monitoring is also a critical part of all of this for employers and it helps us as employers to identify and address those issues, like you said. But we also know there's some challenges that go around monitoring data as well and the declaration of data by individuals. So, could you talk to us a bit about how employers can do more to encourage staff with hidden disabilities to declare their disability and encourage people to be more open about it in the way that you are.

Sandi Wassmer

Well, I have to say it does. It also goes back to culture. So, you know, it's how do you collect that data? How do you make sure that data is safe and that data is anonymised? How is that data used? So there needs to be a whole process within an organisation about how they collect and use data and how they share that data and how to make sure that that data is used in an ethical way. A lot of employees, depending on the organisation. So, if you're in a culture where, you know, people openly talk about, disabilities or openly talk about wellbeing and mental health, and you have that type of culture, then, you tend to find more people will be declaring disabilities because they'll feel more,  or declaring any protected characteristics, because they'll feel more comfortable with the culture of the organisation.

So, you can have you know, an organisation where it's not a strong culture, it's a hierarchical or toxic culture, and people don't feel safe to declare a disability. So I think that there's two elements to it. One is the culture and particularly psychological safety is a key.

And the other is to make sure that how you use the data and that the data is used ethically. And that communication with employees around how that data is collected and used and shared is really, really key.

Paul Deemer

Fantastic. Thank you. Now Pauline, you'll know that the NHS does a lot around this area of declaration rates and we're trying to increase the declaration rate generally across the workforce. We've got the Workforce Disability Equality Standard within the NHS, which helps in that regard. But can you tell us about something or some of the things that the North East Ambulance Service specifically have been doing to improve declaration rates?

Pauline Hogarth

Yeah, certainly. For us, what we've done is we've took a step back and said, okay, this is really personal. Not everybody embraces their disability. Some people I've had say to me, they're actually quite ashamed of the fact that they've got dyslexia or autism or other end of the spectrum, some people say, yeah, I’ve got dyslexia, but I don’t think it’s a disability. So, they also won't be disclosing that information. So, we need to look at that and think, this is such a personal conversation and it is incredibly difficult. We need to work with staff where they are at, and we need to gain their trust.

It's all about winning the hearts, I think before the minds. So we looked at that and looked at it in that way. And when we released a guidance document to support all of that, we made a point of saying, yeah, we recognise it's personal and we know it's not easy to share. So let's show you why we need to gather it and what we're going to do with that.

But obviously it looked at like what Sandi said about creating that culture of disclosure free from stigmatisation. And this is where your staff networks can really help. Able at NEAS have done a lot of work around talking about reasonable adjustments, looking at some of the work that we've done to support our staff, during disability history month.

So that starts to create that backdrop so that when the business then says, 'Oh, okay, please can we have a better understanding of the data' you're resting on that culture that you've already started to create and what we're then able to do, we can say, 'well, look, we need this data because what we'd like to do is understand, for example, a piece of work we're doing at a minute on is there some sort of connection between sickness absence data and disability data?' If we don't have that information, then how would we go about making things better? How do we know that we're supporting all of our staff? How would we know that our recruitment policies are fair and equitable? So, it does take a lot of work.

And it's certainly been a challenge, but I think we're getting it right. I think people are generally a lot more comfortable about at least being open and having those conversations. And from what I know, we have actually started to see an increase in our disability declaration rates. So, we're definitely getting it right.

Paul Deemer

Brilliant. Okay. And I know, Pauline, as well, that one of the tools that you're using, I think, up in the North East is a health and carers passport. Is that correct?

Pauline Hogarth

Yes, that's right. That's something that the staff disability network worked with our EDI team on and it's proven quite effective.

We've called it a health and carers passport. So what we're looking at is, yes, there's a need to have a conversation around health, but also if you're a carer, because that's something that can and does really impact your work environment. So, the EDI team worked with us. We went out to consultation with our staff and said, what is it you really want to capture? What's important to you? And what sort of things that may have proven to be barriers in the past, so we can try to understand how we need to put that across. It's a document, but it's very visual in what it is. We've made it very clear that it's not a list of demands. But it is a communication tool and it's particularly helpful if you're saying the operational side of things where you have a lot of different line managers and you do move around quite a bit.

It can be really difficult if you've got a health condition or disability and you have to have that conversation over and over again. So it just helps to break down some of those barriers. The document itself, if you fill it in, takes you sort of through a bit of a process so you realise the sorts of questions that a manager might need to know.

And it just gives you that space to be able to talk about it. And it facilitates that conversation. Not all managers feel comfortable having this conversation. Not all staff feel comfortable. So having that document in the middle has actually proven quite helpful. And a lot of staff do use it, particularly if we've supported them with reasonable adjustments to then go on to fill that in.

And it's just a great all round tool. So it's proven really beneficial.

Paul Deemer

Fantastic. Thank you. And if anyone's interested in finding out more about health passports, then there's plenty of information available on the NHS Employers website. So if you just go to www.nhsemployers.org and search for health passports, you'll find loads of information on there. 

We're coming to the end of our podcast nearly, so I just wanted to finish on that point that Pauline raised about line managers and then come to Sandy and just, Sandy, you'll know we've talked about leaders and the role of leaders. We've talked about networks and the role of networks. But at the end of the day, you know, as well as I do, that it's line managers who are really crucial in this.

So, what do you think is the role of line managers in this area of hidden disabilities? And what more can they do?

Sandi Wassmer

Well, I think that line managers are essential because, you know, if any of us think about our working life, the line managers, the person that really makes or breaks your experience in the workplace. And I think that leadership in this area needs to be throughout an organisation, but line managers absolutely need to be trained on how to not necessarily identify hidden disabilities, but how to, you know, speaking to what Pauline was saying is that how to have conversations with people where you are in an environment where anyone who does have a disability, well, what's deemed a disability. Because strangely, I, you know, I think I'm blind and I've got ADHD, but I actually don't think of myself as being disabled. But for the point of categorisation, it's important that we encourage people to use that language, because it's a common language that helps us gain information and be able to give to give people as much support as possible.

So it's really essential that line managers not only understand the technicalities of what to do, how to make reasonable adjustments, but how to have those conversations, how to be an active listener and to be able to support and encourage somebody because somebody who's going to perhaps for the first time declare to their line manager that they have a disability, you know, that's something that needs to be held in the utmost of compassion.

And so it's teaching those tools, those communication tools. And how somebody can continue, you know, however often you have a one-to-one meeting, so whether they're weekly or bi weekly check-ins. And so through the cadence of the check-ins, how line managers can make sure that they're checking in, making sure that the person is okay, that they have what they need without making every conversation about that particular subject.

But making sure that the line manager remains open to that ongoing communication. And so, yes, I think it's a mix of technical skills and communication skills.

Paul Deemer

Lovely. Thank you, Sandi. So, we're coming to the end of our podcast and we need to close. And so it just remains for me to say thank you to our two guests, Sandi Wassmer from enei and Pauline Hogarth from North East Ambulance Service. It's been a pleasure spending this time with you. And thank you both for sharing your thoughts, experiences, and knowledge around the area of hidden disabilities.

I hope that those of you listening have been inspired by what you've heard today and inspired to go away and do perhaps one small thing and make a difference for people within your organisation who have a hidden disability. This might be finding out what data you have available, what resources you could be using, like the health passport, for example, or what networks or groups might exist or might need to exist to support staff with a hidden disability.

Whatever you do, please make sure you continue talking about this subject to friends, family, and colleagues and continue to follow what else is going on both nationally and within your organisation as part of Equality, Diversity and Human Rights Week 2024. Thank you for joining us today and remember, not all disabilities are visible.