Transcript of Work and Pensions Committee: Disability Employment Gap roundtable

Thursday 22 April 2021, 3:00-4:30pm

Group 1

Committee members: Stephen Timms (facilitator), Selaine Saxby, Nigel Mills

Stephen Timms: There are various things we’d like to ask you about. Selaine, would you like to kick us off?

Selaine Saxby: Yes, very happy to Stephen. This question is to everyone who would like to answer it – I’m not quite sure how we’re going to achieve that, so we’ll go around in the same order. Or do people want to wave at us because we can’t see everyone on the screen?

Stephen Timms: Maybe we should try it in the same order and see how that goes?

Selaine Saxby: My first question to all of you is: what are your recent experiences of working, or of looking for work? Participant A, would you like to go first?

Participant A: The company that I work for, I’ve now been working for them since 2004. They were actually the first company that offered me a job straight out of university when I graduated. I actually stayed with them because they’ve been very understanding; they’ve made reasonable adjustments for me and that’s made me reluctant to go somewhere else. But in a way I feel as though it’s actually curtailed my career. Essentially, I’m doing the same job that I was doing when I graduated. In terms of recently I would say, as a company, because I’d already had reasonable adjustments made I’d already been working from home for about 7 or 8 years, and so when lockdown happened I was actually in a very good position because I was already set up. I think that for me it’s shone a light on some of the issues that people with disabilities can face if, for example, they need to have more flexible working hours, they need to have more flexibility with their home life trying to manage their condition, but also some of the issues that come about working from home, for example isolation. I could go the entire day without talking to anybody apart from my family, and suddenly I feel like the whole world is starting to understand some of the issues that I’ve been facing for the past 7 or 8 years. I think in terms of recent experiences, the pandemic has highlighted some of the issues that people with disabilities have who are in work or who have reasonable adjustments already made for them, what they can face. I’m hoping it will be a step in the right direction because you tend to get more empathy and more understanding. My fear is that once things start returning to some sort of normality people will forget things very easily, and that’s what I wouldn’t want to see. I also have my own consultancy business. One of the reasons why I set that up was that because my career has been curtailed, my salary just is not enough and so I needed to be doing something more in order to essentially guarantee my financial security, especially because multiple sclerosis is degenerative and there’s lots of studies to show that most people with MS end up having to leave work sooner than people without MS, so that’s worried me. But it’s also meant I’m working a lot of hours trying to do a full-time job and run my own business. Again, lockdown and having everything virtual has in a way helped my business because I’ve been able to take on much more work and I’m not having to travel, to speak at conferences and things like that. But it does mean that some days I’m sat in front of my computer for 12 or 13 hours – that’s not good for anybody. So yeah, that’s my experience recently.

Selaine Saxby: Lovely, thank you. On my screen I can see Catherine – have you got any thoughts on this?

Catherine: Yes. So I have autism. I’ve been in my post now for 13 years. I live in Greater Manchester, but the office is based in Leeds. I had to travel for hours to get there and back on public transport. They’ve shut down the office now, so we don’t have an office. We merged with [indistinguishable] in 2019, and when we merged they cut down all the project workers’ hours. When I thought I was only going to get 4 hours I went to the job centre and saw an adviser. But because I still had a job I couldn’t come under the disability job advisers, because they only see people who are unemployed. The woman was very nice who was trying to help me in the job centre, but in the end I got 16 hours – they chopped me down from 22.5 hours to 16 hours – so I could keep my working tax credits. I always ask that I’m not distracted, that I don’t have any distractions when I’m in the office. When we did have an office we had a quiet office. I have asked my manager, when we can meet people again, because I’ve been working from home since last year… even though I can see the neighbour’s dog who sometimes jumps up on the gate which sometimes distracts me… I asked if we do get a room then I don’t want to be hot-desking. I need to know where I’m going, and it has to be in a quiet room so I don’t have anybody walking past or distracting me because of my autism. When I got Access to Work I only got 3 hours – they only gave me 3 hours Access to Work when they assessed me.

Selaine Saxby: Thank you Catherine. Would anyone else like to answer that one?

Tess Wareing: Shall I go next? My experience is quite interesting because I’m a line manager of people where I work, so I see things from two sides. One of the challenges is with things like reasonable adjustments. Employers don’t have to do them. Through Access to Work I get support for travel to work and I have some support in work. But I was reading the guidance again today, because it’s changed in the last 3 years – my concern is that there’s nothing to force… If you go through the Access to Work scheme there’s nothing to force an employer to make reasonable adjustments, either those suggested by Access to Work or if you get sent through the occupational health route at your employer. I think that’s a bit of a grey area. I know people from talking to some of the advisers to do with Access to Work, in the past people have lost their jobs for the sake of a few hundred pounds because the employers have been a bit uncomfortable. My employer is pretty good most of the time but there is no central budget, so everybody who has a disability where I work, if they ask for reasonable adjustments it will come out of that departmental budget. Sometimes that can lead to tensions. There’s a lot of good stuff that happens, Access to Work is wonderful, for the overall policy where we want to go it’s been great, and for me it’s kept me at work. I’ve been visually impaired now since 2006 and without Access to Work I would not have been able to do it. I love the scheme and I tell everybody about it, but what I’m also mindful of is like where I’m at. A lot of other places are moving people wholly onto subsidiaries. So like Participant A, I think, I’ve worked with this particular workplace since 2002. It’s had its moments, I’ve survived it because of a few brilliant people, but I’ve also encountered some not so brilliant people. I’m heavily involved in the workplace, trying to make it easier for other people to follow my footsteps. I’ve got about another 8 or 10 years to work, so I’m sort of fortunate that I can try and make a noise about things. But for me it has been great. Like Participant A said about working from home, I’ve worked from home as a mix for the last 10 or 12 years. When I worked for my previous employers, I used to work at home before my visual impairment kicked in. Covid didn’t cause me a problem but I fear for the people coming behind that things like reasonable adjustments might get lost between peoples’ budgets, what people perceive, and who should pay for it. Also looking at the Access to Work page today, it doesn’t really mention that much about travel to work; that’s not something my employer gives me and it’s something I have to go to Access to Work for and they make me reapply for it every 3 years. My particular eye condition, like Participant A’s condition it’s degenerative. Why do I have to go through that every 3 years? I asked, because through the RIB I’m on the customer engagement panel and we meet with the stakeholder forum with a wider one with people from the DWP, and they said it was something hard coded in the software, and I went, ‘but I used to work for a computer company and it’s a function of money, if you want to change something you can.’ So every 3 years I have to jump a hoop for something that is not going to get better, and also, like at the moment, just over 3 years ago I no longer see a consultant because my condition is stable but if it does anything it will get worse. Now I have to jump through the hoop in a few months’ time to get the support again, and I can’t ask a consultant to write a letter because I’m not seen by one, because they can’t do anything more for me, and my GP who supported my last application, all he wrote was ‘visually impaired since 2006.’ So I’m dreading come September. As you can probably gather I always stand up for myself, but when it comes to dealing with getting support I find myself absolutely petrified because of the power relationship, because what keeps me in work is the travel to work, and it’s £72 a day to do that if I go in every day, because it’s a £36 journey. I tend to only go in when I am back in the office 3 days a week. So there’s a power disparity that goes on

Selaine Saxby: Thank you very much. Did Ian or Participant B have anything they wanted to add?

Participant B: In my capacity actually working with people with mental health issues, who are either looking for work or at work, some of the most common elements that we face with our service users is particularly around disclosure. They’re concerned about disclosing their disability, whether that’s a health condition or mental health in particular to a prospective employer or to their current employer. Quite often that’s for fear of stigma – I also heard people talking about reasonable adjustments – and it’s about what kind of adjustments could be put in place. My experience of working with service users and the type of issues they face, and also working with employers, is it very much does depend on the individual’s understanding, and I heard people saying, ‘well, I’ve had people championing for me.’ That in itself can make a huge difference to an individual, but unfortunately at a broader level we still experience a lot of barriers around either accessing or actually being in work around providing those sort of adjustments. One point just to add is long Covid and how that’s affected people. We’re seeing a lot of people who are again concerned about disclosing it, or have never had to experience something that has happened very suddenly, and they’re having to navigate what it’s like to live with it: how does it affect their employment, how do they stay financially stable or financially independent because actually they potentially haven’t been able to work. They were working, everything was fine, they were hit by this and suddenly their whole world has changed, and employment is the absolute pillar which enables people to maintain their independence and stability. That in itself has had a huge impact on peoples’ mental health. I think there’s a lot of pertinent and very relevant issues at the moment which have been driven by Covid that has brought it to the forefront of many of us who have lived with a health condition or disability for many years and have almost been alone in having to deal with it. Now we’ve got a condition which affects so much more of the population that its actually come to the forefront.

Selaine Saxby: Thank you ever so much. Ian and Ashley, did you have anything you wanted to add?

Ian Breslin: One of the things being a support worker, and certainly now – obviously I’m looking for work for Ashley – but one of the biggest problems… I’d like to think that Ashley is fortunate because he’s got me, but the people who haven’t, everything is online now, and so the people who struggle with their reading and writing, applying for a job has become harder and harder. Certainly with large retail outlets where they have a large turnover of staff, that’s all online application. To the people with disabilities or for whatever reason with their reading and writing, they’re instantly on the back-foot when they apply for a job.

Selaine Saxby: Thank you very much. I think everybody’s had a go so I’ll hand you back to Stephen.

Stephen Timms: Can I follow up then with the conversation that Selaine was leading on there? Several people mentioned Access to Work, and I wondered if you could just tell us a little bit more about that. Catherine, I think you said you get 3 hours Access to Work. What do you get for 3 hours?

Catherine: When I was in the office, we have a lovely lady who supports me and my colleague. My other colleague on my team also has a learning disability; this lady supports both of us and is very good. She just checks my punctuation and that’s it. It’s harder at home now to support me. She has to do everything over the phone and do things through a WhatsApp group because it’s harder to support me. But I never got any support for travelling through Access to Work. If people rush towards me when I’m in a train station it sends me into a panic attack, and I have to stick on my headphones quite quickly. But I never got any support for that, so I don’t think they really assessed me properly with my autism.

Stephen Timms: Right, okay. But when you’re in the office there’s somebody there with you, but supporting someone else as well?

Catherine: Yes, she supports both me and my colleague.

Stephen Timms: Participant A, I think you said you’d had a fair amount of help from Access to Work as well, didn’t you?

Participant A: No, so I’ve had reasonable adjustments. I think it was Tess who works in the university. I think maybe she talked about Access to Work.

Stephen Timms: Right, so before we… you said you had reasonable adjustments, so that was just your employer agreeing that you could be at home or something, or what kind of adjustments were they?

Participant A: They agreed that I could work from home. Initially when I started working for the company I was going into the office. It was about a 45 minute journey in the morning; in the afternoon it was anywhere up to an hour to an hour and a quarter, because obviously it would be traffic time. The kind of job that I do, our start times are pretty early, so everybody needs to be in the office for 8. But actually that didn’t work for me, because in order to be in the office for 8 I would still have to leave quite early, so what I would do was I would actually leave home at about quarter to 6 and I’d start work at half past 6 and then leave earlier. One of my overriding symptoms with my MS is fatigue, and what started to happen was quite obviously my productivity levels were really falling and so I started to do a couple of days from home and then a few days in the office increasingly. Then we went through a restructuring in the company which actually worked out good for me. I was at that time managing a team, and my team was being disbanded and basically being moved to one of our international offices, so I had the option of taking redundancy or I could essentially take two steps down, become a pure analyst again, because they had an opening which was suitable for me, and they said, ‘well, if you do that then you don’t need to come into the office at all because you don’t need any face-to-face contact with the team, so you’ll be able to work permanently from home,’ which I did. They also gave me, within parameters, flexible working hours. I have a time bank, so the days where I’m struggling I can finish early; the days where I’m ok I put the extra hours in. One of the biggest supports I’ve had – which many people struggle with, they don’t get this kind of support from their employers – is time off for medical appointments. I live in an area where there is no specialist MS care, so I have to travel into London. It’s around an 80 to 90 mile round trip, so when I have my appointments that might just be a 20 minute appointment, it will take virtually an entire day. It’s not a holiday for me, so why should I take it out of my annual leave, which actually gives me less time to rest and have a holiday? My employer has been great, and I just tell them I’ve got this appointment and they say it’s fine, and however long it takes it takes. I know a lot of people with MS particularly, but also other long-term conditions and disabilities, who have to either take it as unpaid leave or they have to take it out of their annual leave, or they have to make up the time, so maybe work in the evenings or at the weekends. That even goes for treatments. For example, there’s one MS treatment which is a hospital infusion once a month, so I know people 12 days out of their annual leave, they’re using hospital treatment which again like I said is not a holiday. I would say that those are the three main things which have really helped me.

Stephen Timms: And at no stage in any of that have you needed or your employer needed to apply for Access to Work?

Participant A: No, and I’ll be honest with you – I’m not even sure if my employer would even know about Access to Work. When I joined it was a small company, we didn’t even have our own HR. Now we do because we were taken over by a bigger company, but I think it was even easier when you just went to your boss and said, ‘look, this is what I need,’ and they said, ‘ok, we can find a way,’ or actually, ‘no, we’re not able to do this,’ which I think in my case has definitely been a help.

Stephen Timms: What kind of work is it that you do?

Participant A: With the employment I work as a translator for a business intelligence company. I translate Spanish language business press which goes out into corporate strategic reports, so it’s a desk job essentially.

Stephen Timms: And by the sound of it you have quite an enlightened employer?

Participant A: You know, I can say this because it’s going to be confidential, but I don’t know that they’re enlightened. I just don’t know whether they’ve really known any better, if that makes sense? I’ve never felt, for example, like they’ve really known about the Equality Act, and actually I disclosed my MS diagnosis as soon as I was diagnosed, probably out of naivety because I didn’t realise that discrimination even happened at that point because I never had any experience of it. I don’t know if they even know what the rules are, I think it’s just that they’re empathetic. I have a really good line manager and I think that can really help.

Stephen Timms: That makes sense. On Access to Work – oh, who has their hand up?

Participant B: It’s me. I just wanted to draw upon a very prescient point that Participant A raised about having to take time off for medical appointments and how that gets managed, because there is a financial impact of living with a disability. That could be, for example, around prescription charges, it could be having to travel to attend appointments, it could be needing care which could be from unpaid carers or a reliance on family members and friends to do things. I speak from personal experience from myself and obviously many of us service users. I think those are quite often very difficult for people to manage where, as Participant A very rightly said, it’s not a holiday when you’re having to do these things. There’s often the option that you can take unpaid leave but again, if you’re already paying out a higher financial cost because you have a condition or disability and you’re then taking unpaid leave, actually the amount of income you have, or actually disposable income if you’re lucky enough to have disposable income, much of that gets fed into actually just living with a disability. Quite often I know people are very concerned about moving employers if they’re somewhere where they might get some of the things they need, but maybe they are experiencing difficulties at work. But because they have certain things they can get they’re willing to stay in that situation. Or, for example, I know people who have forgone career progression for fear of moving companies, because actually they’re with a company that gives them what they need but actually there are no opportunities. Quite often that financial element plays a huge role in terms of how everything else feeds into it, so time off for medical appointments, flexible working, obviously access to work – that plays a huge role in terms of how it can support people as well.

Stephen Timms: Have you used Access to Work?

Participant B: I personally haven’t used Access to Work. We have had service users where we have signposted them and directed them to Access to Work but we ourselves don’t tend to get involved at that stage. When we work with a service user, if we feel that they would benefit from it we would absolutely signpost it to them. I think sometimes the feedback has been, ‘I haven’t been able to get it and therefore I feel stuck because I don’t know what else to do, I don’t know where else to go.’ I think it was Catherine’s point – sometimes you can get something but not everything. It can be a bit piecemeal at times, and you’re not necessarily looked at holistically in terms of how do we really enable this person, how do we really give them what they need in order to do what they need to do? There is so much, and again I think historically, how people with disabilities have been viewed is, ‘oh, we’re doing you a favour to help you to do something,’ but actually there are so many skills, so much insight, so many qualities, there is so much that we all have to offer, and actually it needs to be about enabling rather than seeing it as, ‘well, we’re kind of doing you a bit of a favour.’ It should be the standard, and it should be the norm of being able to offer what somebody needs, understandably within parameters – I do understand that – but unfortunately it’s still not the norm and I see this every day in my role unfortunately.

Stephen Timms: I can see Tess, you’ve put your hand up. I was going to ask you more about Access to Work, but you make your point first.

Tess Wareing: It sort of ties in with what’s gone before, because on this stakeholder forum there’s about 25 charities including RNIB that meet with the DWP a couple of times a year, and I asked a question on it that ties into what Participant B said. I asked about those people who don’t make it through Access to Work and get turned down, and if there was any follow up – they said no. There’s statistics about who gets it and how much is spent and if there’s complaints, but there’s absolutely no follow-up – I specifically asked the question – of those people who don’t make it to understand why they didn’t make it, and even to encourage them how they could have made it, what was wrong with their application, be it poorly done or something else. The other one that ties in again with Participant B’s comment: I successfully navigated with the PIP system, and I used some of that to make sure that my home environment and myself are ready to be able to go to work. Although when I had the assessor in the house they said that PIP has nothing to do with work, technically that’s correct, but if you get PIP it can help with some of those other challenges. If you don’t get it you’ll face a double whammy. But again, sometimes that can help manoeuvre things a bit, it just gives you more leeway. Also with Access to Work, I’d like to make the point that often it’s referred to as a grant, but again often it’s made out that it’s a benefit – no, it’s a grant – and actually it’s really a tax rebate and it touches on one of the other questions we’ll come to. By working I’m paying into the tax system and spending money in the economy. I’m not depressed, I’m not causing the NHS any extra money. So again, to be made to feel like somehow I’m taking money out… An example of that I can give: when I had my last assessment I was pushed to agree to 3 days a week going into work. My employer was quite happy that I work at home, but sometimes the job requires being on-site, etc. I didn’t get any pushback when I put the claim forms into Access to Work, but at the time of the discussion it was very much, ‘oh well, see if you can keep it 3 days that you claim for until you work at home.’ Well technically there is no budget limit, it’s fifty-something thousand pounds a year, but you get to feel like somehow you’re skimming the system or something. It just makes you feel very uncomfortable. In terms of the support, the travel to work support contributes to my taxi bill because public transport where I live, even though it’s only 12 miles, it would take me about an hour and three-quarters, possibly 2 or 3 changes of buses, walking between different areas, so they were happy that I got Access to Work for a journey that normally takes 25 minutes by car – that has enabled me to carry on in that role. I also had support with equipment over the years, and again my employer, depending on which manager I had at the time, was not keen to pay from their own budget because the department would have to pay. Technology has moved on, so most of the support I get now is using technology that comes built into things like Microsoft, so that tension for me has gone but it hasn’t for many others. Again, you’re always made to feel that you have to do it as cheaply as possible without looking at the benefit to society and to the state in terms of the tax you pay. Last year I was told they’d spent £110,000,000, I think, paying out in grants. But I asked could they do a costing, how much it costs to run and how much do they actually get in through the tax system, and does it offset? I know you can get the data to see what peoples’ earnings are and tie it into the tax system. I’m sure somebody could do it if they wanted to, but again it often comes back to that view that people with any form of disability get made out as somebody who’s doing something untoward when all we want to do is live.

Stephen Timms: This reassessment coming up, that happens every 3 years does it?

Tess Wareing: Yes.

Stephen Timms: And for this time is it purely going to be your travel costs or are there some other things in there as well?

Tess Wareing: I think I will just be asking for travel at the moment. I think I’ve got it down to that, but it’s just even the stress of that because if they say no, potentially I have to walk away from a good job. If I pay the taxi fare everyday myself, I’d have to debate…

Stephen Timms: Yes, quite. Participant A, I think your hand was up again I think.

Participant A: I just wanted to make a quick point that I think there’s still generally a need for more clarity and guidance as to what exactly disability means for employers. I do a lot of patient advocacy work, not just in the MS community but across patient communities, and often I see people talking and they say that their employer doesn’t consider them to have a disability, particularly if it’s not visible. Obviously you can say to people to refer to the Equality Ac and things like that, but even then there’s so many grey areas and so many areas where there’s potential for getting around things that can make it quite hard particularly for people with invisible disabilities. It feels like they have to essentially prove why they need the help in a way that they shouldn’t necessarily have to, because it feels like they’re constantly having to justify themselves in a way that, for example, someone using a wheelchair and it was blatantly obvious, they wouldn’t necessarily. Talking about things like MS, bladder and bowel issues can be a problem, and so somebody might need to have a desk which is closer to a toilet; cognition, for example, how do you explain you might have some issues with memory and concentration, can it be possible to make meetings shorter and have more of them. Those things can be very difficult for people to explain, and I feel if there was more clarity and guidance in the first place then actually… it’s one of those things where not all disabilities are visible, essentially. I think that would make it much easier and put people with disabilities in I guess a stronger position to be able to ask for help.

Stephen Timms: Yes, I can see that. The next hand I saw was Ian, did you want to say something?

Ian Breslin: Yes, thank you very much. I’ve been using Access to Work for 15 years now, where I’ve been applying for support for the people I work with. I’m applying quite a lot of the time for other people. One of the frustrating things is that they are fantastic, but it’s the time of turnover of the response now. So let’s suppose I was working with Ashley now and we had an interview for tomorrow – I’ve got to apply for it online and it takes up to 3 weeks to get a response back. That’s only a response, that’s not saying that the funding is going to be put into place, that’s someone from Access to Work to get in contact with me and then I put the claim in. It’s a very, very long process.

Stephen Timms: Is that worse than it used to be?

Ian Breslin: Yes it is. Before we actually had – we’re in South East London – and we had a local branch of the job centre in Peckham who were looking after our claims and we actually had our own advisers that we could talk to, and we actually met so we knew who we were talking to. Now, if you phone up you’re probably not going to get answered, you can be put on hold for an hour and a half plus. Obviously that’s me working for Bromley Mencap, let alone someone who has a disability trying to get through to Access to Work. If you are looking for support and you have been successful in an interview and going online again, you’re still looking at over 3 weeks before someone will contact you, so then you have to put a claim in on top of that. Now you will never get the same advisor; you could be passed to anywhere in the country. Everyone is helpful but you have to start the whole process all over again. As I am working with a lot of people, let’s suppose I had a claim for Ashley and I had a claim for Steve. I can’t speak to the same advisor. I would have to speak to one for Ashley, and then I’d have to close that process and start another process for Steve. That never used to be the case, and again that’s recently changed and is very, very frustrating. The amount of my time, which obviously could be spent better, the amount of hours that I am communicating with Access to Work, the forms I have to fill in, the work logs that I have to do, I have to put a task in every 30 minutes. So it’s very drawn out and it’s much harder now than it was even 10 years ago.

Stephen Timms: Right, ok. Thank you very much for explaining that to us. I can see that Derek has now joined us. Do you just want to in a couple of sentences tell us who you are and where you are?

Derek Kelter: Yes. I’m Derek, I’m a disabled person based just outside of Glasgow.

Stephen Timms: Thank you, we’ve just been talking about Access to Work. Have you had any experience of Access to Work, or is there anything you can tell us about it?

Derek Kelter: Yes, I was quite reliant on it when I was working. I was working consecutively for just under 30 years. Initially, because I’m visually impaired, I used two pieces of assistive technology to enhance my production in the workplace. It was highs and lows but eventually I got there, and latterly, towards the end of my last employment period, finances kicked in and it was very difficult to upgrade technology. Obviously because of my role and my impairment I had to rely on what they call intra-work, you know, travel in terms of getting between various properties within my organisation. All in all I’d say it’s 80% productive in allowing me to do my job fairly well.

Stephen Timms: And how long is it since you stopped your job?

Derek Kelter: I’ve been unemployed for a while unfortunately. As much as I’ll say of the whole experience, within my personal experience, because I’m visually impaired and kind of engaging with a provider who’s able to provide travel support and assistive technology, I haven’t really found a provider that’s been willing to take on that financial commitment. I’ve really, really struggled in the last 4 years in particular to find an accessible platform to allow me to get back into work.

Stephen Timms: What was it before, when you were in work, what was the difference that made it possible then which you haven’t been able to find since?

Derek Kelter: Obviously when I was in work I qualified for the Access to Work that allowed me to work independently, i.e. buying assistive technology. When I was office based I was able to access information through that technology so I was fine, then obviously when I was senior management travelling between, not just within the Glasgow area but across Scotland and the North of England, I had the support in terms of the travel, and also when I was in my management role, because I had issues with mobility, you know, kind of negotiating strange environments and so on. I had a support worker, a PA if you like, who was able to help me with mobility. I consider myself fortunate – when I was made unemployed following a brain injury, after 3 years when I’d rehabilitated I tried to get back into work. In Scotland, I don’t know about my colleagues here, but in Scotland you have a disability employment advisor. The world was evolving – when I engaged with them 4 years ago they don’t seem to have face-to-face engagement, so you’re left to your own devices. I didn’t have access to the technology at the time because what I needed cost about £1,400 and I didn’t have that money at the time. I needed to engage with the job centre to find a provider who could support my access needs, both in terms of technology and travel. Unfortunately it wasn’t very forthcoming.

Stephen Timms: I can see there’s a couple more hands up but Selaine, is there anything you wanted to come back on? No. Ok, Participant B, I think your hand is up again.

Participant B: Yes it was, thank you. I just wanted to pick up on a couple of points that I think I’ve heard across the board from different people. I think one is this whole definition of disability and what it means. I think again having that education for both employers but also us in the community as well, us as people. I know many people who under the Equality Act would be classed as disabled, but they don’t recognise it because they don’t know about the Equality Act and also the historic connotation of what being disabled was is not the same as the legal definition, so the kind of the lay meaning and the legal definition are very different and there is a big disconnect as to what people actually recognise as a disabled person. I think that’s a really important point that I think Participant A mentioned. I know there’s a lot of charities out there who have been campaigning around ‘not all disabilities are invisible,’ kind of highlighting that you do get people with disabilities where you can’t physically see it. The statistics that I read were that about 80% of disabilities were invisible out of those that actually have a disability, and this is where reasonable adjustments play a big role. Quite often the onus is on that person to know whether or not they actually are classed as disabled and also for them to push their employer rather than it coming from the employer saying, ‘how can we support you?’ I think there’s a lot of fear from employers about, ‘we don’t want to offend anyone, we don’t know what to do, we don’t have the resources, we don’t have the money,’ and we have some excellent practice but the majority of employers, certainly in my experience, they’re not quite sure what to do, and it’s almost seen as a bit of a burden rather than a, ‘what can we do?’ The aim is we want to be able to prolong the period that people can be in employment for, because as I mentioned earlier there is a financial impact of having a disability, particularly disabilities where they might be degenerative, so you want to maximise the time where you can work but the time you can prolong it. Reasonable adjustments are absolutely the way that can enable that, but quite often, and like I said with many of our service users we have a lot of conversations about how they can approach their employer to discuss reasonable adjustments, and quite often they’re just told a straight up no. I think that’s a lack of education, but also the lack of a societal approach to what disability is, and I think that fundamentally needs to change.

Stephen Timms: May I ask – our time is coming toward the end I think – the group that’s on the call, almost everybody, I think everybody, is either in work at the moment or was in work. But we know there are lots of disabled people who are not able to get into work because of the kind of things we’ve been talking about. If there was one things that you think the government could do to enable more disabled people to get into work, what would it be? Ian?

Ian Breslin: One of the initiatives that I use is job carving; carving out positions for people. Mainly the people I work with have a learning disability. If there was something, the government could ask larger companies to carve out jobs specifically for people with disabilities. We have companies looking for specific people to do specific jobs, who are maybe higher up in the market, but actually for those jobs that are reasonably straightforward for people and depending on their disabilities it would be really nice to carve something out specifically for those people.

Stephen Timms: Very interesting, thank you. I’ve never heard of job carving, so that’s very useful to hear about. Anyone else got any thoughts about this?

Tess Wareing: Yes, can I turn a question back to yourselves as MPs? How many constituency offices employ someone with a disability?

Stephen Timms: That’s a very good question, Tess, and I don’t know the answer to that.

Tess Wareing: Well some people may not have disclosed. The other one I’d like to tap into is back to value. A lot of times people with disabilities have got massive problem-solving skills because they know how to solve a problem, they’re flexible, they’re resilient, they’re tenacious, and these are skills employers want, and in fact got me through Covid because I was an early adopter of Covid – another story – and adapting to that whole world. It was those abilities and skills that I’ve learnt over years, and yet they don’t get valued. I suppose my key message for the government would be, and for everyone, value people with disabilities. Don’t see the negatives; see the positives. Also, one day everybody will have something, whether it’s temporary or permanent. I’ve got one little thing: the statistics that were published: at 16-64 you had a percentage of people of working age who have a disability. But I’m in my late 50s and I will have to work until at least 67 or 68, so can we stop saying working age is 64, because working age is going to be for a lot of people 70. For some people that’s not optional.

Stephen Timms: Quite right. Participant B, did you have your hand up?

Participant B: Yes. So just to answer your question, which is a very complex question, but to try and answer it simply I think there are two things. I think a change in the societal view of disability, and that’s across the general population – I know people who don’t even think they’ve come across a disabled person even though they may know it, because again Tess raises a good point about disclosure. The second is we need stronger protection, legal protection for people with disabilities where it’s much clearer, because that quite often is the grey area where people can be moved out of employment. They can find ways around it, and actually for our service users when we explain they are covered under the Equality Act, this is how to approach it with their employer, that fundamentally provides them with a lot more confidence to be able to stand up for their rights. I think there needs to be much stronger legal protection for people with disabilities and what disability actually covers as well. I think is really important.

Stephen Timms: Does this all come back to this point about the definition of disability and making that definition wide enough, with the protections going with it?

Tess Wareing: On the back of that I might just add that the Equality Act protects you getting into employment, but a lot of organisations have capability procedures, you can get into a company and they’ll use capability procedures to get people out.

Stephen Timms: Right, and stronger legal protection should deal with that.

Tess Wareing: Everybody talks about getting into employment, and often it’s easier, but again just picking up on some of the other points, if you have to fight with someone getting into employment your relationship is already sort of slightly ajar. If you have to fight to get in, it’s harder to stay in because you’ve always got that slight edge. You want to be taken on as an employee like everybody else and valued – I keep coming back to that word valued – and you don’t want to have to worry about how the relationships started. We all know once relationships get a bit wobbly they tend to wobble off the edge.

Stephen Timms: Let me ask you, Derek – because you’re in the position where you are looking for work – if there’s one thing that the authorities could do that would help you, what would it be in your case?

Derek Kelter: I think personally and professionally, a greater recognition of what we call user-led organisations – organisations run for disabled people by disabled people. There’s 2 or 3 in and around Glasgow that could do a lot better work, so a greater emphasis on awarding contracts etc. to organisations that are user-led, led by disabled people themselves. That’s what I’d like to see.

Stephen Timms: I think that’s a really interesting point. One of the arguments that’s been put to us in our inquiry is that it would be better to organise employment support more locally, rather than trying to organise it all from Whitehall. I think one of the benefits of doing that would be exactly as you say, that some of the more local organisations could get more of a look in than they do at the moment. Participant B I can see you nodding, is that your view as well?

Participant B: Absolutely. The service that I work in is actually a local NHS service, and we support people in our locality. We have employment advisors on the ground, we understand the local area, we have connections with local stakeholders, with the jobcentre, with secondary mental health care, with local businesses. That’s actually really important to support in terms of those connections.

Stephen Timms: Are you funded by the DWP or by some other means?

Participant B: The service is funded by the DWP.

Stephen Timms: Is that organised by the DWP locally or are you part of the national Work and Health programme?

Participant B: It’s part of the national programme, and the particular one that I’m in is employment advice within the IAP service, so the mental health services. That’s currently where my service sits. We’ve expanded hugely from having 3 people to now 12. It’s been a massive expansion and really important. I just wanted to make one quick point that it’s also really important to have visibility of people with disabilities in companies. I say that because in our organisation we have people at the top with disabilities, and that in itself makes a difference, when you can see people like yourself. The fact they’ve been able to get there because the right things have been put in place to allow them to use the skills to do the job. If somebody has the right skills to do the job, they might just need a few things to be put in place to allow them to do it. That’s about equity, not equality. Equality is actually discriminatory, what we need is equity of access to work. That’s what is really important.

Stephen Timms: The point of having role models that people can see who have been able to do well, yes.

Participant B: I’ve worked for the first time with somebody who is visually impaired and has a service dog. I wouldn’t have even known – obviously there’s a physical element – and he’s one of the most intelligent men I’ve ever met. He’s just phenomenal at his job. The fact he’s visually impaired is by-the-by, because he has things to support him and enable him to do his job, but the fact is as a person he has the skills and ability to do the job, not because he’s visually impaired. He has those skills; he just has to have certain software that lets him do what the rest of us do in a different way.

Stephen Timms: Yes. Tess?

Tess Wareing: Just two things. One thing that’s hopeful across society is young people. I deal with quite a few students, and the attitude of young people is that they expect equity, they expect people to have access. I’ve had more trouble with people my own age above with my visual impairment over the years than I have when I’ve had 40 students who I can have very frank and open conversations with about it. They’ve been very supportive and have wanted to explore it, and are not phased by in in a way. Maybe over the years in the past having a disability had certain connotations.

Stephen Timms: That’s an optimistic message then.

Tess Wareing: Yes, there definitely is one. Picking up on the point about having people as role models, I think sometimes in business, people see disability as a weakness, and that’s why in business circumstances people are less likely to be obvious about it. Also, we haven’t touched on anything to do with intersectionality. So yes, a gentleman might have got to the top, but it helps that he’s a gentleman, if you look at the statistics. But if you’re a woman with a disability or of certain ethnic groups, if you look at the statistics that also comes into play, and we haven’t touched on that.

Stephen Timms: Is there anyone else that wanted to comment on one thing that you think might change things for the better, to increase the number of disabled people that can be in work? Participant A?

Participant A: I was going to say that for me it’s just reiterating a few points that have already been made. One is the legal protection, I think that is so important because when it comes down to it you can have people who might be sympathetic to what you want to do, but if they’re dealing with corporate processes then sometimes they just turn around and say, ‘well, this is what HR said.’ Even if you have the nicest of line managers I think that legal protection is what’s most important. Also I think Participant B brought up a really good point about the visible role models. I often say to people that I shouldn’t really be where I am. I’m Asian, I’m a woman, I have a disability, a long-term condition which is also invisible. So we can’t necessarily see disability on its own, we also have to remember the other factors, because we’re not one-dimensional, we’re not just our disabilities. There are other factors that are potentially going to come into play. It might be that we have to look at people who have disabilities and are from different ethnic backgrounds, what are the things that are specific that could help them, or women with disabilities, etc. The room is going to close in 10 seconds so I’m going to stop there.

Group 2

Debbie Abrahams MP: We’ll start with introductions, so we know who is on the call today. I’m happy to kick off, as I mentioned before my name is Debbie Abraham and I’m the MP for Oldham East and Saddleworth. I’ve got a long-term interest in disability issues and prior to being an MP I used to work in the NHS as a public health consultant. Really nice to see you all today.

Shaun Bailey MP: I’m Shaun Bailey and I’m the Member of Parliament for West Bromwich West in the West Midlands, and my interest is more Access to Work. I’m not as much as an expert as Debbie in this field, but I certainly have a passionate interest in it so really looking forward to hearing everyone’s thoughts in the discussion today.

Anthony Rainford: My name is Anthony and I work for a company called Bostik, as an Export Business Development Manager and I’ve been there about 22 years. 6 years ago, I was diagnosed with multiple sclerosis, so life is hard. Thankfully it’s not progressed too much, so I can pretty much do most things, other than walk properly, so I’m very interested and excited to see what’s discussed today.

Mariana Law: My name is Mariana. I am the Individual Placement and Support Service Lead for quite a large area: Wiltshire, Swindon, Bath, North East Somerset, Bristol, North Somerset and South Gloucester and we support people with mental health issues to get back into paid employment. We are working alongside the AWP mental health trust, and our referrals are coming from the Community mental health teams. We work with people when they are still very close to their illness to support with finding and sustaining competitive paid employment as part of their recovery journey

Manon Lewis: And I’m Manon, I think I was one of Mariana’s first clients. At the time I was an in-patient in a specialist eating disorders hospital, I hadn’t been in employment for a very long time, I think I’d been in and out of inpatient hospitals for over 10 years, was completely institutionalised, and I was very frightened about trying to access the world of work again. But the help that Mariana gave me over the last five years has been absolutely amazing and I’m working now for the first time and it’s fantastic.

Debbie Abrahams MP: That’s wonderful. Well done.

Ian Newsome: I’m Ian. I left full time work a couple of years ago and started working for myself. The reason I gave up full time work was because of the progression of my MS. I was diagnosed 20 years ago and things got gradually worse over the years at work and as I now work for myself doing a little bit of what I can manage to do which isn’t quite the same as what I did before. I’ve got a few reflections of relevance from both an employed and self-employed perspective.

David Smith: My name is David. I’m registered blind and have been since birth, I have a guide dog called Darcy and I’m lucky enough to have some limited vision. I’m also lucky enough never to have really been unemployed. I’ve been very fortunate with my career, I’m 54 now. I work part-time for Thames Valley Police as a Diversity Lead for Disability across the force looking at how we support people internally and externally. In February last year myself and my colleague Karen, who has severe dyslexia, launched our own community interest company called B Reasonable aimed at disability employment, using all our years of experience within trade unions, our own employment and our own lived experience and we put together a whole load of packages to encourage employers to recruit disabled people. That enables us to run free workshops for disabled people to know how to get a job, we don’t concentrate on the stuff about completing CVs, we explain to them the law, what they’re entitled to under the Equality Act etc. I also co-chair the English Access to Work Partnership forum, that’s 30 different organisations who represent different disabilities who meet 3 times a year with the Access to Work quality team. We worked with them very closely last year on producing the combined process of supporting people through COVID and providing assessments for people working from home as well as at work.

Debbie Abrahams MP: Fantastic. There’s a huge lot of experience in this group isn’t there Shaun. I don’t know how we want to start; I’m really interested in trying to unpick a bit more of people’s stories about how the system has worked or not worked for them, I think from what I can understand from peoples' introductions different people have had different introductions. Laura welcome, would you like to introduce yourself Laura.

Laura J Welti: I’m from an organisation called Bristol Disability Equality Forum and we’re 100% disabled people led and controlled organisation, so all the staff and all the ongoing volunteers as well as trustees. Obviously, as you would appreciate, disability equality in employment is pretty tricky, particularly actually getting the job in the first place. And I suppose the thing that I think has been missing from so many disabled people’s employment initiatives from government over the last, at least 10 years but probably longer, has been that there is virtually no money put into funding organisations like ours to actually educate employers about taking on disabled people.

David Smith: I would agree with that as well, very much so, because it sounds like we do something very similar, and we fall into the same boat.

Laura J Welti: And it’s crazy because actually the biggest barrier of all is convincing employers that you can do a job and their assumptions about what is needed are dubious. A really simple thing that I point out to people is around job descriptions. They always put written and verbal communication skills, but what they actually mean is written and face to face and writing it that doesn’t exclude people whose primary language is British Sign Language. So those sorts of thing are where they get people to self-select out before recruitment even starts, because they don’t appear to comply with the criteria. And I think gender is important in that as well because research has shown that women tend to only apply for work where they meet every single bit of the criteria, whereas men and some women like myself we look at that next step as an opportunity to develop, so we’re just concerned that we meet most of the criteria and that we’ve got the transferable skills to pick up the rest. So, it has important impacts there. Another example I will just give you, rather than dominate, is that I used to work for the council, I won’t say which council, and years ago they were doing equalities training for the senior management team, and they were given some case studies. One of which was a blind woman applying to be a receptionist and they all decided she wouldn’t be able to do the job. The trainer then pointed out to them that the courts had disagreed with them, and they had a bit more of a discussion and they turned around, and you can only praise them for their honesty I guess, but they turned round and said, ‘well we still don’t think she can do the job’. So, you’ve got those sorts of barriers as well.

David Smith: It’s overcoming that prejudice and that unconscious bias isn’t it, because they don’t know that individual’s life story, but they’ve ignored what they’re capable of and they’ve focused on what they feel they can’t do. And that is really common. You look at the person in front of you and you automatically make a subconscious judgement on whether that person is going to be suitable for the job or not, and then you’re already fighting an uphill barrier to convince them that you’re the right candidate.

Laura J Welti: And then you’ve got it the other way round as well where you’ve got people with hidden impairments who are not believed that they’re really a disabled person.

Debbie Abrahams MP: Has anybody else got a similar sort of experience to Laura and David around employers and needing to have a better understanding about disability as a whole and recruitment. Anthony and Ian what was your experience from your employers when you became ill?

Anthony Rainford: I have to say, I have a good story. My employers Bostik have been really really good, they’ve been amazing. I work on the first floor, legally I think they had to do it anyway, but they built me a lift, they made all the doors have just a touch button rather than me having to open them. I’ve had occupational health in my office to make sure it all works for me. As you can tell from my job title it’s export trade so I do have to travel abroad occasionally, for example our head office is in Paris, normally that would be done in a day, but they allow me to go the night before stay in a hotel get comfortable, then go to a meeting, and then go back and have another night in the hotel and then travel home at ease. So, my employers have been amazing, however if for any godforsaken reason I lost my job, I would be really worried about applying for a new job because of my disability. Like it’s been said, I can do the job, I’m very experienced in my job but people do not know enough about, certainly my disability MS, and they’d just think, I would suspect, it’s too much hassle to take on, let’s overlook him. That’s what I would feel going for a new job, thankfully, fingers crossed I will be in this job until I retire.

Debbie Abrahams MP: Well, we need to be holding up Bostik I think in terms of what they’ve done, I mean that is fantastic. Was that your experience as well Ian?

Ian Newsome: When I started working with my last employer, I worked for 26/27 years with them, and I didn’t realise I had MS. However after maybe 6 or 7 years with them, when I was diagnosed with MS, things began gradually getting worse. Initially I was fortunate to have a line manager who understood MS as they were able to relate back to previous personal experience of a colleague who had MS and therefore they understood it. Consequently, for the majority of time my employer provided excellent support; and this was way before they were required by law to provide this sort of support, so at this time I was well looked after and able to work from home one day a week. But as someone has already said, MS symptoms ebb and flow over time and with the changing condition new challenges arise, and at the same time there is often a constant flow of new line managers and you’re continually re-proving or re-demonstrating your ability to do the job to your new boss. How well I was treated was very much down to the perception of individual managers. This was the main challenge, certainly for me. One boss’s opening gambit was ‘I always seem to inherit problems like you’ but despite the presumption that I would be a problem, hopefully over time I demonstrated my disability wouldn’t prevent me from doing a good job with the appropriate flexibility. But I do think the attitude of the manager is a really big thing and it’s almost like the manager needs a confidence  to be able to raise disability related issues with staff if there is something they really want to ask about, or challenge, or say they’re not happy about, they need to be able to do that. I think they often feel that they dare not rock the boat or go beyond the norm or be discriminatory.  I would rather someone was honest and open about genuine concerns they might have about disability so we can get the ideas out, and say ‘look this is the challenge for me personally, and this is how we might be able to get round it’; or ‘well, that might work for others, but it won’t work for me’. So, I think the biggest challenge for me has been the attitude of managers, and I think as someone else has said the hidden condition, specifically the cognitive issues associated with MS, compound these problems. I can walk reasonably well so my disability is less apparent, but over time my concurrent and hidden symptoms became more and more difficult to deal with. While I could accommodate individual symptoms, concurrent things were more problematic.  So the ability to make adjustments depends on the individual’s mix of symptoms and the role in question. However, hidden and changing conditions I think are quite challenging because colleagues might not know about them, and they don’t need to know about them; but managers do need to know about them because they can then help and it’s just getting that sort of situation taken on board by managers, properly understood and fairly accommodated. ‘Workarounds’ kept my disabilities hidden in the short term, but over time my hidden problems got worse and then suddenly emerged. If managers feel they can’t confront an issue as it arises or talk about it or find a workaround, then they may believe that the best thing for them is maybe to get rid of the problem or to avoid it in the first place. So, there can be difficulty in getting employment and maybe difficulty retaining it when your limitations appear to be not (or no longer) consistent with the role.

Debbie Abrahams MP: Manon, how did your employer help you? Was there awareness around disability issues and your particular mental health? Did that help?

Manon Lewis: To be honest with you they just seemed to completely ignore it, and I think that is something that I’m finding quite difficult with it being a hidden disability. I think that’s why my story and my work with Mariana is important because I don’t think I’d be where I am today without her help. I was diagnosed with anorexia when I was 14, I managed to stay in school I did my GCSEs and my A-Levels. I started a dentistry degree in 2007 but had to drop out because of my illness, I then started a pharmacy degree a year later but since then, so this is a period of about 15 years, I was in and out of hospital as an inpatient because of my weight. And I was so frightened of the world of work because I hadn’t been working and I was showing my GCSE and A-level qualifications to employers and they were just saying that you’re too qualified for this, jobs like shop assistants and things like that. The just didn’t understand how somebody, I had quite good A level and GCSEs, how somebody like me could have been out of work for so long. So, I was quite a unique case I think, they just didn’t know what to do with me and so I never got offered anything. Then the last time I was an inpatient, and because I’d faced this so many times before, I asked if there was any organisations out there that could help me get into the world of work, who could support me, and one of the psychiatrists in the hospital recommended the Richmond Fellowship. So, Mariana has been working with me for four years (Mariana agrees) so everything from helping me write a CV to approaching employers and asking them. I suffer from quite bad anxiety, and I couldn’t have done it without her support, and I think the biggest thing, that I think is the most helpful thing, is that it’s time unlimited. I’ve been in my job now for four years, but Mariana is always there. If there is any problem in work Mariana is the one that I turn to and I think she is the one that talks to my manager more than I do. I think it’s just confidence really, so she is my confidence in some way, and I can’t tell you how much being in work has helped me, just having a purpose. I think I just felt completely institutionalised, I had no self-esteem, no confidence at all, and just being part of something again has really helped me to stay out of hospital. So, I think it’s so important that people like Mariana’s organisation are supported as much as they can because I really think they can make a huge difference.

Mariana Law: Manon’s case is not a unique one. There are still employers out there that don’t understand mental health and the impact it can have on people in the workplace. Manon and myself had a discussion before this event started because we’re facing a bit of an obstacle at work where the regional manager don’t think Manon has the ability to progress and to study for a BTEC course which would help her to move on in her career and develop herself, and she wants her to increase her hours before she does that.  Manon need to work within the permitted hours and amount of allowed money per week not to lose her ESA and her benefits at this stage, because her anxiety levels will increase if she has to go over to Universal Credit whilst studying and increasing  her hours. The employers don’t understand that it needs to be small steps and that those steps need to be taken gradually for the person to be able to develop and reach their own potential.  I think there is a lot of work to be done still around employment, mental health and other disabilities in the workplace. You get good employers as well and I don’t want to tarnish everyone under the same brush, but there are pockets, even in organisations that appear to be disability friendly, you have pockets of management who don’t understand it, that don’t understand why someone goes off sick every week and that it’s stress and anxiety. They don’t understand to have the conversations. It’s still a taboo subject and until we can address that fully, we’re not going to be able to move forward to give (disabled) people the same rights.

Shaun Bailey MP: Mariana that’s a really good point. I was just going to say, and it might be something that David wants to pick up as well, it sounds to me that like there is a bit of an issue here, in terms of at leadership level there doesn’t seem to be many people that have had lived experiences of living with disability or living with additional needs. It almost sounds like it’s a bit of a circle where because you don’t have those people with those lived experiences these same issues around lack of understanding seem to be happening. How do you feel we can break that cycle? Because clearly something has got to be done on the ground level to ensure that businesses have individuals there who are making these decisions that understand these experiences at the same time. Because this does seem to be part of what you’ve all sort of said in a way.

Laura J Welti: One of the problems that I’ve noticed is that once you go up into management, a lot of employers do not think you can go into senior management and only work half the time. And that is often what stops people progressing. It certainly happened to me when I became a disabled person, I had been a senior civil servant, and I found myself looking for work after an initiative finished and I decided to get out and nobody at the job level that I was applying for would take you unless you worked full time. And as a person who now goes in and promotes disability equality, one of the things I will try and point out to employers is that in one way it’s a plus, because instead of a job share what you can have is the person in the role half time, and a deputy half time, and then you don’t have that problem of having two people making decisions that might not always mesh or conversely spending a lot of working hours overlapping to liaise over things. And because employers are always interested, the other slight plus is that the person in the deputy role gets the experience to move up and the employers saves a little bit of money. But I think the thing about the managers is really really important. I was doing some work with the NHS in the South West last year and one problem was that some people, as with Manon, had people who were really supportive, but others didn’t. There was a deaf chap, he had waited over two years for his Access to Work reasonable adjustments to be put into place and the manager was so slow, they of course lost the opportunity for the Access to Work funding. One of the things we also offer is to go in and talk about how to manage Access to Work applications and in particular how to ensure that those reasonable adjustments follow the person around the organisation so that you’re not starting from scratch every single time you move. And just one other thing that was prompted by what Anthony was saying is that some large organisations have the resources to be very very flexible, but of course most people are not employed in large organisations, and they don’t necessarily have the money themselves to put in lifts and stuff. But it also highlights that, it’s not guaranteed, but it can be that it’s easier to keep a job once an employer already knows what you’re capable of i.e. when you’re already employed than it is to get it from scratch. Like Anthony was saying he is not sure what would happen if he then found himself back on the job market again. So, I think there are those things as well.

Shaun Bailey MP: That’s great Laura thank you. I think David we’re waiting on you, but I don’t know if anyone else equally has got anything to add on that point.

Mariana Law: I think one way to solve the problem is education, education, education to employers. And I know it might sound like a costly exercise, but we need to look at the long-term dividends of what it would mean to people’s lives, first of all, and money can’t buy that. And also, to the economy, if you have more people in work then they definitely will be a saving for the Department of Work and Pensions, as less people will be claiming benefits. So, it’s probably worth looking at how can we drive education from the top down, and the bottom up, and make sure that employers do have trained staff who understands disabilities and hidden disabilities like mental health.  We already find that more people with Mental Health issues is coming through the services post COVID but also people who lost their jobs due to COVID.  We just need to keep on working on the issues and make sure that we raise any issues.  There is a lot more work to do around raising the profile of mental health, and of course I’m championing mental health because that’s the sector we work in, There might be some creative resources for employers to make sure that they have got disability champions in the company who can go around and educate the managers and educate the staff. We try to do it from the IPS services to support our workers. We offer lunchtime talks for free to employers to try and educate the staff and the managers about mental health, but we can only do so much in the areas where we work, it’s a much wider topic to discuss.

Anthony Rainford: Sorry, if I can just pick up on that I know I keep going on about Bostik but what they’ve done recently- and I’m actually the champion of it, is we’ve done the mental health first aider course, 15 of us including myself, we did it in January. So, we’re all trained now, and we’re starting to bring it out in Mental Health Awareness week which I think is May 6. We’ve got a week long plan of action with competitions and awareness and we have monthly meetings of the mental health first aiders. But I totally get what you say about it’s easier for bigger companies to do that because the money is there, and it’s being made available for us. Bostik is a worldwide company, so I totally get what you’re saying about it’s harder for smaller companies.

Debbie Abrahams MP: Can I just come in about Access to Work. Is everybody’s employers, and yourself, are they making use of it? (All nod). Do you think it’s well known?

Mariana Law: No, it’s not well known. It’s not publicised properly, and from our end, where we are supporting people, we have to do a lot of research and a lot of talking to people to find out exactly what funding is out there, up to the point of helping someone get a new set of clothes to go to an interview, getting transport to go to interview, transport for the first time you go to work. Those things are not widely publicised and it’s only because we are working in an employment service that we make it our duty to find those out, but they are still hidden.

David Smith: Can I jump in, there’s a lot I would like to comment on. The Access to Work, the English Access to Work forum, it was a national one but this year we’ve broken it up into regional forums to make it easier because there are local issues that affect local people in Scotland, Wales and Northern Ireland, so we’ve had a bit of a break off for other people. Access to Work have just produced a whole publicity kit which you can download from the Access to Work website, for people like us to be able to promote the Access to Work scheme to all our partners, to all the employers that we come across because there is a concerted effort from the DWP to promote the biggest secret in employment, it’s the biggest secret that nobody knows about. That’s what Access to Work has been like. I’ve been claiming Access to Work for 25 years; I get a taxi to and from work, I have a support worker and they’ve purchased equipment for me. Now I went to a boarding school for kids that were visually impaired- it sounds posh, but it wasn’t it was like a mini comprehensive and it was for kids who were visually impaired- and I left in 1983 and we were pretty much told ‘Good luck, there is nothing out there for you’. It was before the days that the Disability Discrimination Act really had properly kicked in- people didn’t really know about it. Over the years, the first job I actually ever had besides a youth training scheme was in an engineering factory, so you’ve got someone who can’t see very well, working in an engineering factory because the employer was paid money to employ disabled people. That’s what it was like in those days, but actually it gave me a good grounding in the working environment. After leaving school, I’m a confident person, I’m quite a gregarious person as well, but even then, when I started looking for work, we’ve already mentioned things about having the confidence to apply for a job in the first place not knowing what to expect etc. So, with B Reasonable, and whilst here at Thames Valley Police, we’ve developed a number of services and we developed a process called RAMP which is the Reasonable Adjustment Managers Process and that was born out of my experience, and the experience of people that we had come across. We developed a framework that can be inserted into employers. Once we’ve done the groundwork about letting them know about the benefits of employing disabled people, busting they myths that aren’t true: that we’re lazy, that we’re going to be expensive, that we’re going to be off sick all the time, we’re going to be ineffective and distract other people. All of that is cobblers, there’s nothing to support that at all but that’s the common misconception. One of the biggest misconceptions is 75% of employers that were surveyed by Disability Rights UK a few years ago said they didn’t think that their building was going to be accessible, because the conception was that if you’re disabled then you’re in a wheelchair and that’s down to the symbol of disability. Well actually only 4% of people who work actually use a wheelchair, the majority of people might have limited mobility, but you can make those adaptations and there is funding towards those adaptations. It’s perceived as being expensive, an employer can go to Access to Work and say we’ve got a quotation for putting a lift in. We’re a small company, we can’t afford this ourselves and Access to Work will look to help part fund that. We had an individual who had Multiple Sclerosis when I was at Northampton Police prior to this, and we did a three-way agreement between us and the NHS and Access to Work to fund a £20,000 wheelchair. So, the NHS funded the majority of it and rest of the cost was split between us and Access to Work. So the flexibility is there. What we’ve done with the RAMP process is we identify people at the application stage. If we have identified someone who wants to work, and we’ve gone to an employer and said look these are the skills the person can bring to you, and once you've highlighted the skills that the individual has you look at the barriers, but you’ve already got solutions to the barriers. And the biggest thing is how much is this going to cost us, that’s the first question you’ll ever get asked, it’s going to be too expensive. No, because we can work with Access to Work and then all the way through their working career, right down to the end with a dignified exit from employment, because it might be that they’ve got a career for life or it might be that they’ve started a job but the reasonable adjustments that you put into place aren’t enough to overcome the barriers that there are and you’ve gone through redeployment, you’ve gone through all the other processes before the person either chooses to leave because it’s too uncomfortable or too stressful. But the main part of it is to put those adjustments into place before they start so they’re there for day one. You can apply to Access to Work for assessment 12 weeks prior to the start date and then of course depending on the size of the company, and the time scale which you apply once somebody has joined, it depends whether Access to Work pay for the whole lot, or they will pay a contribution depending on the size of the company. Mental health services are always free, and it is the fastest growing area of Access to Work, their mental health support services, where they will provide up to 9 months' worth of coaching, job-related coaching to help manage your condition in the workplace and provide any necessary training that you are happy with being carried out for other people. Because we need to remember under the Equality Act, which is something I know inside-out because I made the energy to learn it, unless there is an intrinsic function within a job, a disabled person doesn’t need to tell the employer their disability. However, an employer does have the right to ask for some supportive evidence, whether that is from a GP or occupational health, that they have a condition that requires reasonable adjustment and people don’t understand that. At the early part of this process the line manager, unless given permission by the individual is not actually involved, they are not involved in the decision-making process, in the respect of whether that person needs to have reasonable adjustments in the first place because they’re not qualified to make that decision. I’m not qualified to make that decision, I’m only qualified to make that decision for myself, so we seek independent support to identify if that person requires reasonable adjustment in the first place and 99 times out of a hundred they do. Because even if they don’t have a disability, or it might be short term, they still need support and the process reflects that. And then we identify what the best form of assessment is, now it could be, as in a majority of sensory or physical disabilities we go to Access to Work. Where Access to Work isn’t terribly good, and we feed this back into them, is with neurodiverse conditions such as dyslexia. We’re dyslexia assessment trained so we can carry out a workplace assessment and where somebody might only need coloured transparencies as an example, because they’ve got visual stressed, Access to Work will recommend £4,500 worth of equipment- someone mentioned earlier that they had Dragon Software and didn’t use it. So, they spent over £500 on software they didn’t actually need in the first place so that scares employers. Even though Access to Work might fund the majority of the cost, you’ve still got to go through the process of procurement, and then you’ve got to arrange the training and the individual didn’t need it in the first place. So, we don’t just use Access to Work. We have police officers who have hearing aids, and they need to be able to communicate with their radios so we go to somewhere like RNID, for the visually impaired we can do our own internal ones but if we need to, we will go to the RNIB. So, everything in the RAMP process is external, and part of the reason of it being external is that you’re getting external expertise, but also it reduces the liability on the employer. So, Access to Work, whatever the funding is, because the decision process is being made by people who are qualified to make those decisions, the employer is not at risk of someone in HR or a line manager going ‘I don’t think you’re disabled’ because of that implied disability issue, and that in itself is a form of discrimination. That’s supported by what some people call a Disability Passport- now you might have heard that banging around a bit- and it’s quite an old document, and the majority of them aren’t fit for purpose. They don’t take into account GDPR regulations because you're recording personal sensitive data which under GDPR has to be managed in a very specific way, so we educate employers on how to handle and manage that data, and that’s all recorded in their tailored reasonable adjustment agreement, which is kind of a disability passport 2.0 because it goes into a much more holistic view, and it uses a RAG approach to variable conditions such as mental health. So what you’re like on a good day, if you think you’re treading water or actually you just can’t cope, and that is a conversation between us and the line manager at that point, because they've got to consider the operational value of the individual, and what they can and cannot do, and we prescribe in that document, in relevant circumstances, what will be expected from the employee but more importantly what support will be expected and agreed from the employer. And we found that worked really well. We bought it into Thames Valley Police, and we’ve done over 150 assessments since July last year, and most probably referred about 40 of those to Access to Work. Access to Work, for those who know it is has a bit of a bad history but in the last few years they really have come on. There are still areas that they need to improve, and they will openly admit that, like I said the forum that I co-chair has direct links to the policy team at Access to Work and we’ve been able to, through the organisations that represent disabled people, to shape their services.

Debbie Abrahams MP: David, thank you. Shaun, I’ve got a couple of questions. Can I put those in now and then you can wind up? We’ve heard absolutely fantastic information, I haven’t had the depth of information that you’ve provided about Access to Work David, but what I am aware of if that it’s quite small scale in terms of how many disabled people have been able to get Access to Work, I think it’s about 42,000, and I don’t think the Department has published recent figures for a while now.

David Smith: We’re due the figures this month.

Debbie Abrahams MP: I think it hasn’t been published for quite a bit. Given that we know there are about 4 million disabled people who want to work. What are the implications then for what you’re saying about Access to Work? And can I relate it to Laura’s very important point about smaller businesses, nearly half the population are employed by small businesses. And Thames Valley Police and Bostik from what Anthony has said is a large organisation, what particularly do we need to do to recognise the scale of the issue about trying to get 4 million disabled people into work.

David Smith: There are loads of organisations like Laura’s, and our organisation that are out there fighting the good fight with little support. So better awareness of who we are and funding to work with government organisations with partnerships. You tend to go for the big organisations who support disabilities, the big charities, and there are about 7-8 large charities within the UK, but there are thousands of little people like us who are trying to do in on a local level. And we’re more personalised, because we are all disabled led, well the majority of people are disabled led, and they all have the same passion, they want to be able to allow people to learn from our mistakes, to empower them to have the confidence to stand up for themselves. And where they can’t, we can step in and mediate between them and the employer to create a better working environment where everybody feels comfortable. So, if you’re pinning me down to one- and there’s loads you can do, but I don’t want to dominate the conversation- it is about giving us the opportunity to let you know that we exist so you can provide us the support that we need to be able to carry out your objectives of getting a million disabled people back into work. That for me is the biggest thing.

Manon Lewis: I just want to say really, as somebody who suffers from mental health problems for a very long time, I don’t think I would be where I am now without the support of organisations like Mariana. I think she started working with me when I was in hospital, and I think that’s a really important thing is the co-working between the NHS and organisations like the Richmond Fellowship. I think there are so many people in my position who have suffered from mental illness for a very long time, and they just feel completely in their own little world, and they need help to get into work and I think they need the help. Like you said about the confidence, Mariana is my confidence, I don’t think I would be working without that, and if I wasn’t working, I think my self-esteem and my mental health would have deteriorated further so in some way it’s saving money in the long term, if that makes sense.

Debbie Abrahams MP: It does, I think you’ve put that really well. Mariana, are you employed through Access to Work as well, do you provide that support or is it just through the Trust as something that they’ve set up separately as a mental health trust?

Mariana Law: No. What we do in the individual placement and support services is we work alongside multi-agencies. We work alongside the DWP to understand benefits, Access to Work and all the benefits that we can offer and advise our clients on. We work alongside the NHS and  we’re in partnership with NHS Community Mental Health Trust where we get the referrals from, in the secondary mental health services. But I think Manon is right we need to also look at when we talk about what is going to help to get disabled people into work, is look at organisations out there that can provide the support that we’re offering. The individual placement support model was new in the UK, but at the moment it is really growing fast because it’s an evidence model, it’s time unlimited support, we engage with the employers, we educate employers, we support the clients as best we can, and we work with DWP. So, it’s a collective approach. And I think , as Manon said, there needs to be more services like that to support people to hold their hand.

Laura J Welti: I just want to point out that Richmond Fellowship is funded by Avon and Wiltshire Mental Health partnership, I believe, to do this work. And they only go with larger organisations who are able to do contracts and that is one of the ways that small, disabled people/lived experience led organisations lose out because they are not large enough, they are not national with branches and so on.

David Smith: I totally agree with that.

Laura J Welti: I would also say that in Shaun’s point about people in leadership we need monitoring of the disability pay gap, not just the gender and race pay gap. I disagree with David though, the vast majority of what the government call disabled organisations have a minority of disabled people in them. What they have is 51% of the trustees, but the people doing the face-to-face work don’t necessarily have any lived experience at all.

David Smith: Sorry I don’t remember saying that, because I agree with what you said. I meant those of us who are working for ourselves. Because I agree with what you’ve just said, I absolutely agree, they’re not using people with lived experience. The other thing, just to quickly mention is charities and organisations are very happy to give work experience to people with disabilities because they think they don’t need to pay them any money. So, people get asked for their input and say can you give us your advice and guidance, but nobody is willing to pay them for it. And that is something that we fight as well.

Laura J Welti: The thing I would say is that I think  the problem is that the government in particular, and in consequence a lot of disabled people organisations the ones who’ve got just 51% of trustees, they’re stuck on what was meant to be the first step towards disabled people led organisations. I was around, back in the day, when it was first talked about, and the idea was that 51% was step one. It was then meant to increase incrementally as time went on and people could recruit new more appropriate people. And I really think we do need to get back to that.

Debbie Abrahams MP: We’ve got around 8 minutes left. Shaun, shall I hand over to you for the last bit?

Shaun Bailey MP: From my end I think it’s a really interesting discussion. One thing that I wanted to perhaps pose, or an observation I suppose. There seem to be two elements to this. On the attitudes bit, there was a really interesting point that I think David and a few others made, it’s almost like there is still this underlying thing that people should be afraid to disclose their disability. And I know that even in the wording of the Equality Act it’s almost as it is saying don’t say if you don’t want to. And it sounds as if, from what we’ve heard today, that there needs to be an element of bringing it to the point where you should just be able to talk about. And I think more broadly as well, an interesting point is this SME space too that people have talked about, and Debbie you and I were nodding profusely when they were talking about that. It’s been interesting to hear about that massive gap there. I appreciate we’ve only got 8 minutes but one point I did want to ask is around self-employment, and particularly the push that the Government has tried to make around this. I’d be interested to know particularly perhaps from Ian because I know that you’re self-employed, as a self-employed person how have you found that different and how have you been perceived when you’ve tried to go out? I think it’s an important part if we’re trying to break this cycle, self-employment forms a part of that as well and I think it fits within that, so it would be interesting to hear very briefly what views are around self-employment and the disability space there.

David Smith: As someone who is self-employed as well, as a director of B Reasonable it is incredibly challenging. I find it easier to get a job in employment than to get work as a self-employed person.

Ian Newsome: Just to pick up on that, it is difficult to work for yourself. I’ve got different things that I can do, and when I have to go out and bring work in, that is much more challenging for me. One of my avenues of self-employment is running a holiday-let and I am much more in control there as people come to us for business. But going out, finding and securing work is more difficult. Going through quite complex procurement processes which might mean we’re going through lots of hoops that I find much more difficult than someone without the MS cognitive problems is a restriction. On the face of it, we’re expected to pitch for pieces of work where we’re coming on the same footing as maybe a highly polished consultant. It’s difficult and I don’t blame the clients for going for a more polished product than we can offer. And it’s only when we get beyond that initial barrier and get an understanding about our limitations as well as our added value, that we are able to overcome some of those challenges. I think someone has already said that a big employer is an easier platform to get occupational support from, and I’ve mentioned a supportive Occupational Health resource is valuable, but this function is often limited to large employers and I see the majority of employers are not going to be in that position. And even some big employers don't provide occupational health that is particularly supportive of individuals, so it doesn’t always work. But where that support is good, it is very helpful. I know we’re short of time, so I don’t want to hog the conversation, I’ve put a lot of my comments in the chat so I hope that is supplementing the voice recording.

Shaun Bailey MP: Thanks Ian, that’s great. Debbie, I don’t know if we want to whizz round really quickly and get one final thought from everyone before we close. So, if we start with Anthony, one final though from you.

Anthony Rainford: To me it seems that I’ve been very lucky and I’m the exception to the rule, there are a lot more struggles in the smaller business. So why is it more difficult for small businesses? It’s obviously funding so give them the funding, give them the access, give them everything that they need to make their workplaces successful to disabilities. Get the knowledge out there; again, Bostik have been very good. I’ve spread the awareness of MS throughout the company. It’s just people need to know more about disabilities rather than just assuming we’re just a problem. If we can get that message out it would help loads.

Laura J Welti: I’d endorse Anthony. People often don’t really appreciate that we’re an asset not a liability. The other thing that I haven’t mentioned that I think is worth touching upon, and that is that most ways or writing job descriptions are way out of date and they exclude people as a consequence. One example I always talk to employers about is when they’re looking for admin people. They will usually have five to six people all working to the same job description, now if they had half of them working to the upper end of it and half of them working to the lower end of it then there would be jobs for people with learning difficulties. Minuting meetings or typing up reports if there were people with learning difficulties, who don’t have that level of literacy then there is still the postage, photocopying, printing end of it that needs doing and you are working to people’s strengths. The other thing I would say is I have just been through the process of re-applying for all my own Access to Work and applying for two new members of staff who I’ve been supporting, and one of the first thing they said to me was ‘ok, you will have an assessment and then work out how much you will pay.’ Now if I didn’t know Access to Work really well and know that we were small enough that we wouldn’t have to contribute anything, that would have put me off. The information is there in the document they then email you, but I’ve already been put off. They should say you may have to contribute, or it’s likely you have to contribute if you have 50 or more employees, rather than scaring people off in that way.

Manon Lewis: I just want everyone to have the support that I have had. I was institutionalised, I was isolated, I was completely lost and without an organisation like Richmond Fellowship’s support I don’t know where I would have been. And I think it’s really important to say as well how much good working can do for someone, just to have a purpose has really helped with my mental health.

Mariana Law: I just want to touch on Laura’s point about us being a large organisation and we get our funding with AWP. We’re actually getting our funding from the clinical governance. We had transformation funding from NHS England but it’s now back to baseline from the CCGs. But there are large and small organisations that can tap into that that do some brilliant work supporting people with disabilities and mental health issues back into paid employment. It should be available to anybody regardless of the size of the organisation.

Ian Newsome: The soundbite for me is the space and permission to talk about these things particularly in the workplace. The importance of hidden and variable disabilities, I think that is paramount. It would be beneficial for employers to retain staff and to retain disabled staff there should be encouragement, whether that’s through tax breaks, or employment legislation. And I think the gap between the big employers and self-employed needs recognition. Big employers have occupational health resources but for small business and the self-employed what support is there? I still don’t have the answer to that. Those are the key things from me thank you.

David Smith Just two things. One is removing the job description altogether and do work trials. That’s what we try to encourage for those who claim to be disability confident especially with people with learning disabilities, learning difficulties or people who have dyslexia. The point is let’s have work trials which is what’s encouraged for the disability confident scheme for employers, to give the opportunity for people to demonstrate they can do the job rather than asking them verbally. And Ian you might agree with this as a self-employed person I know what I’m good at and what I’m not good at and I need help with the stuff that I’m not good at. As someone who is visually impaired; website design, digital marketing and due to being dyslexic accounting. I’m good at getting in front of a room of people and telling them the benefits of employing disabled people, and why they should do it and then helping them. The back office stuff is what I’m not good at.

Shaun Bailey MP: Thank you so much everyone. That is really helpful, it’s been great for both of us.

Debbie Abrahams MP: Thank you so much everyone.

Group 3

Darren Ayres: Hello. My name is Darren and I’m the Service Manager for Richmond Fellowship and we are a national mental health charity. I’m actually based just up the road from Dr Ben Spencer here in Runnymede and our service covers the whole of Surrey and North East Hants and what we do is we put thousands of people back into employment, every single week, regardless of their health barrier or mental health problem.

Susanne McCabe: Hi, good afternoon folks. I’m based just outside Glasgow in a town called Rutherglen. I’m here because I picked up an email from Remploy, I’m on of their delivery partners wearing my life coaching hat. I’ve had a number of long spells off work over the years with chronic fatigue, where I’ve been off a year, in one case a couple of years, and someone thought that it might be useful for me to get involved this afternoon, given my experiences of trying to get back into work and looking for work, when I was out of work and off sick. So, that’s why I’m here.

Jonathan Mears: Hi, good afternoon. I’m Jonathan, I’m based up in Newcastle, though I was originally based in London. I’m here today representing the Royal National Institute for Blind People, I’m a volunteer with them based up here in the North East of England. I do various bits and pieces including community engagement with other visually impaired people such as myself. So it could be getting them to be socially active in activities or helping to fundraise, stuff like that. And I also sit on  a working age panel as well, which is why I got into today.  I’m quite passionate about supporting those with partial sight and blindness to be able to use their skills, use their passion to be able to get into employment and stay in employment. And the panel’s aim is really to work out what are the issues that need raising and take them to wherever we need to, which is partly why I’m here today so thank you very much for having me.

Melissa: Hi I’m Melissa. I live near Southampton. I have multiple sclerosis and I was invited by the MS Society. I’ve been doing a lot of co-production groups with the MS Society and we recently had a co-production group about MS and how it affects you at work, how it affects you finding work, how it affects you keeping or staying in work and following that they invited me to join this today to talk about my experiences which have been fairly negative. Thank you.

Jurgen Donaldson: My name’s Jurgen. I was asked to attend by the RNIB. I’ve been in the corporate recruitment world for the last 16 years and I now work for Radical Recruit, one of the UKs only not for profit recruitment firms assisting people with protected characteristics into work. I lost my eyesight two years ago to a brain tumour, so in that period was made redundant and have gone through the experiences around trying to find a job with a disability so it’s a pleasure to be here today.

Steve McCabe: Thank you. I think that’s all of us now. Ben do you want to lead off with what we’re trying to do today.

Dr Ben Spencer: Thank you Steven. I think for me one of the key areas that I’m really keen to understand from people, firstly thank you so much for attending this call this afternoon, it’s just to get a bit of a better idea of what it’s like. We get a lots of evidence from lots of groups in terms of supporting people living with disabilities back into work, and some of the barriers around that, but I think it’s really get a sort of sense of first-hand experience in terms of what it’s like trying and supporting people back into work or getting into work. What barriers you’ve faced, or you’ve seen people face if you’re working with supporting people, and where you think there are areas that need to be changed, or how things need to be changed? What is your take on it from your personal experience what we’re missing or what me may miss in terms of the work that we’re doing on the committee? That’s what I’m really keen to hear as much first hand as possible, and what it’s like in the real world, in terms of what you’ve said. Melissa, if you don’t mind starting, sorry to put you on the spot and if you don’t want to we’ll go on to someone else, but it was quite notable one of the things that you said in your introduction, your experience was quite poor and if it’s ok I’d like to pick up on that and start of with hearing your perspective.

Melissa: Yes, that’s fine thank you. So I was diagnosed with multiple sclerosis almost two years ago and I had only been in my job, which I’m still in at the moment, for less than a year and they just have not been very supportive at all. I’ve experienced discrimination, being isolated and left out of things. I’ve been asked to do things that are just not really appropriate. So one of my main symptoms is that I struggle with mobility and when I got back into the office- I had a few weeks off because I was in hospital- when I got back to the office I tried not to move around too much but I was asked to make sure that I walk up and down the stairs with documents. And I mentioned several times that this was just not appropriate, like I’m just in too much pain to be walking up and down the stairs, and that’s just one example of the things that my employer has just not understood. There is definitely a gap between what they expect of me and what I can achieve, and that gap is just not going anywhere. And it doesn’t matter how many occupational health meetings I have, it doesn’t matter how many letters I get from my neurologist and any of my other medical professionals, nothing changes ever. One of the things that has been suggested countless times was to allow me to work from home a couple of days a week so that I could manage some of my symptoms a bit easier from home, and I was told constantly that it’s just not appropriate for my role to be allowed to work from home and then of course the pandemic hit and now I’m working from home full time and it turns out it’s completely possible for me to do my role from home. And it has had a positive impact on my symptoms, so being a lot easier to manage working from home, it’s just one of the things that my employer could have done to help me a little bit and just sort of chose not to. For me it’s just been a very negative experience, and if I had been in the financial position to do so I would have left my job months ago, but I’m just not. I’ve applied for financial support and it’s been rejected, and that sort of thing so, for me it’s like I’m staying in work because I have to, but it just makes me miserable really.

Dr Ben Spencer: Susanne you were nodding a fair bit, would you fancy coming in and sharing?

Susanne McCabe: Yes, thanks Ben. So I’ve had three long periods off work. My chronic fatigue started in 1999 and I was off for fourteen months. At that time I worked for an IT company, locally at the time, and I wanted to return to work on a phased return and I was told no, that they didn’t want me to come back to work because they were worried that if I tripped or something that I would sue them, so I was like ok that’s not helpful. As it turned out we were then taken over by a large IT company and they had occupational health. And I had been trying for months saying ‘please, will you just let me come back to work in some capacity?’ and I just kept hitting walls. But when we were taken over and we had occupational health, I then had a meeting with the occupational health doctor and she said, ‘well how much time do you think that you could do?’ and I said well I think you could start on two or three half days a week, and she’s like ‘well that’s fine, let’s make that happen’ and very quickly I was able to get back into work and I stayed at that point for some time. I think I built it up if I remember, but yes I needed that support from the workplace. The second time I was in a job that I wasn’t really very happy with anyway and I really just left, I was burned out apart from anything else because I was also travelling to work but I didn’t enjoy working there so I had a long period off work.  And in that case rather than trying to get back directly into work what I did was I did a couple of uni and college courses, just a couple of hours each a week, and that was really with a view to (mic cuts) so basically I got a couple of college courses and it was just really to get me doing something, and get busy and try to get myself used to getting activity going on. The third time I was off for, it ended up being a couple of years, and what had happened was my mum had had a really bad psychiatric illness, she had psychotic depression, she was hospitalised and this happened on the day that my youngest was born, so we had three girls under five, my mum was really ill and she was in hospital for many years and then in a nursing home after that for many years so she was ill for a long time. And I was trying to look after a young family, my mum was ill and I had quite a high-pressured job, which I was doing two days a week. I found that very hard going actually because my fatigue hadn’t really properly left me and really I was sleeping at lunchtime the days where I wasn’t at work, so on Thursdays and Fridays when I would go into work I found it really really hard going to get through the day. Anyway with all this going on, my mum being ill and young family and things like that, I managed to keep that going for a few years but about four years in I started to get panic attacks, and I was exhausted, and I started to notice that just day to day things were really quite hard to keep on top of, just making meals and things like that. I went to my doctor and I just said ‘I can’t do this, I can’t keep going’ and she signed me off with chronic fatigue. And I was off as I say for two years, and I was actually going to hand in my notice after a year, because to be honest I was fed up with constantly handing in my notices, it was embarrassing. I was trying to get back into work and occupational health said that I didn’t have enough hours to offer, I had been working fourteen hours a week and I said to them ‘look, I’m sitting on the internet and I’m reading articles and things like that and I keep going for about an hour a day and then I get really tired, why don’t you let me use that hour a day to work? And in my mind 5 one hour a day is five hours a week, that’s about a third that I was doing anyway and I could have worked from home, in my view, but I was told no, if that’s all you can do that’s not enough, we’re not going to have you back. So that was a big frustration for me and I think I realised that I couldn’t change the other situations in my life but I could change my work situation. So while I was off I was told that rather than resign I should apply for ill health retirement, that process took another year, so while I was off I retrained as a life coach and I used that hour a day to my advantage. Part of that was about fitting in with family and fitting in with my own health and I still go for a nap after my lunch and that helps me manage my energy, but yeah that’s why I got into life coaching and I do my own business. I only work half days, but that’s where I’m at.

Steve McCabe: That’s really helpful Susanne thanks. I’m Just conscious of time so should we move onto Jurgen. I noticed that you were nodding as well when Melissa and then Susanne were talking.

Jurgen Donaldson: Yes, thank you. My own experience has obviously been fairly recent. So in August 2019 I was diagnosed with a brain tumour and subsequently lost my eyesight, and probably in the month after the brain surgery to have the brain tumour removed, I had a meeting with my employer who wanted to demote me because I was disabled and said that it was in my own interest to now demote me so that I would be more comfortable, they felt, not managing people. I faced a former colleague who said to me that well now I was blind I wouldn’t be able to manage people and this is someone who was a senior HR person. And I think what my experience has shown me is that employers just lack the education in how to deal with people with a disability, they’re scared of it, and I’ve seen that in my fifteen years working in corporate recruitment for the likes of JP Morgan and City is that employers don’t always necessarily not want to hire disabled people, they don’t know how to hire disabled people and they don’t know how to work with them to ensure that they get the support that they need. Managers don’t get the training that they need to manage people with different support requirements, businesses don’t know how to deal with it, they think it’s going to be expensive. They lack just the full comprehension in many ways about what Access to Work even is, in a lot of instances, and how that could work to their benefit in supporting key talent within their business. I saw some of it as a recruitment manager and I think I’ve certainly seen a lot more of it now having a disability myself and in the work that I now do supporting a lot of people with a disability into work. For me fundamentally, it boils down to a certain level of ignorance and a massive lack of education around how to work with people and what support is available to employers.

Steve McCabe: Thank you. Darren or Jonathan, have you got anything that you would like to add to this at this stage?

Jonathan Mears: Yes, so I guess from my experience, I’m the same as Jurgen so it’s visual impairment for me. I guess my one really, I’m kind of one that’s my career is still at that very young stage, but the trouble I get is really getting through the door in the first place. You can probably see the perception of visual impairment is I look like a normal person but it’s not obvious that fact that my vision isn’t fantastic, so trying to explain that to people in interviews for example that kind of almost eliminates me from being interviewed and things like that. It’s very questionable for companies, so you can do the work, but they think you’re not able to do it because you can’t see it and I agree with Jurgen in the fact that there’s no real knowledge or education about things like Access to Work that exist. I have had experience in work thankfully, it’s been more in the third sector, the charity sector and the reason for that really is that the kind of support that I’ve received in the past that it was really the one place to go to actually fit in with people like myself. In a way it was a hinderance because you wanted to get out there and you wanted to try and expand yourself and increase your skills and knowledge. But in a good way though it actually helped me to really improve myself in terms of being sort of a life coach person as one of the other people were saying, because then I could sort of do the office work and the basic IT skills and things that I’m supposed to do for my job. But also I got involved in bits and pieces of training so for example I could be showing a partially sighted person how to use technology, so computers and tablets, and how they could get things to…so they’re doing a document and their computer or tablet can read it back to them once they’ve finished, or make things nice and clear for people to see, turn down the colours for example so you don’t have the glare. It was kind of passing the torch, which is great in a sense. Unfortunately, I had to leave due to redundancy, so I’ve experienced that as well. It’s been ups and downs of it really, so I feel like when I try to push myself through the career ladder I suddenly come grinding to a halt. I come to a position where I am now where it’s volunteering with the RNIB, I’m part of the charity sector, but I’m kind of not getting much progress out of it.

Steve McCabe: Can we just hear from Darren before we finish this section.

Darren Ayres: I think from my perspective, I’ve worked in physical and mental health now for about 20 years, I can only confirm what everyone has said here so far and echo the same sorts of the stories and experiences from the service users that we’ve worked with. And certainly something that I’m very interested in is exploring what we can do actually to support employers to support people who have disabilities, because the evidence is actually quite clear- which is not known to employers- but if people have the right wraparound support within employment, their actual attendance is better than those people that are what we class as non-disabled. And this is such a little-known fact, but extremely powerful, and I spend a ridiculous amount of my time explaining to employers the importance of supporting people with disabilities and what a positive experience it can be. We know the evidence is clear, having meaningful work and activity is the number one recovery factor for physical and mental health, it’s very very clear. It tops talking therapies and medication everything, that is not to say that those things are not important in conjunction, but meaningful work and activity is the way out of this conundrum. If we can educate employers and empower employers to take those positive risks then actually, we can restore the economy, we can support those people that do have those protected characteristics, and we educate everyone, so I feel really privileged today to be on this call and I really hope I can contribute and support this discussion.

Steve McCabe: I suppose there was something I thought I heard you all say there, maybe in slightly different ways, was that it was as if there was a pre-determined work situation that you were expected to fit into, and if it had been the other way round as it ended up for some of you, whether it’s working from home or using your hour a day Susanne, if it had been the other way round and you’d been allowed to utilise your skills and your abilities in the way that was convenient then it would have been much easier, and there maybe wouldn’t have necessarily have been the same issues in being able to do your work. It felt to me like that was a common theme.

Dr Ben Spencer: I think building on your reflection, and particularly Darren’s point, and I think people have mentioned education of employers is important, I’m wondering if that’s enough really in a sense. What do you think, given your personal situations, or the situations that you’ve supported people, what do you think needs to happen to make people have a very different experience to what I think many people on this call have had? What needs to shift this? Is it just education, and if it is that’s great and focus on that, but is it other things as well?

Jurgen Donaldson: There are some real fundamentals, if I may, I think from my own experience, and I’m sure this is something many people on this call have come across as well, is some of the challenges with Access to Work as a programme. It is a great programme in many ways, I mean without question, it has paid for the software I use in my laptop, it’s paid for a couple of pieces of hardware that I have. The benefit that I had was that I had a full-time contract of an employer that was willing to allow me to learn to use the adapted technology as I came into the job. And I think if I look across how it works the challenges are it takes too long, normally, from the point of application to the grant being given it takes far too long. It also becomes problematic in that you have to be in work and have started your job for the grant to be given, rather than it being able to say be granted ahead of time, or be able to do the assessment prior to starting your job, because almost by its nature, by the time you start the job if you then have to take several weeks to learn how to use your adjustments it doesn’t sound very attractive to many employers. It also means that because individuals can’t take the adjustments that they get whether it’s software and technology or hardware or other elements with them when they leave a job it really restricts you in the kind of jobs that you can go for so almost inherently you have to find a permanent job. So particularly as we see now in the current economy a huge focus on shorter term contracts, temporary work, even longer term contracts it really creates a lot of rigidness in the types of jobs that people who require Access to Work adjustments are able to go for.  So I think something I said before, to Access to Work themselves actually, was that if there was a way to create a more personalised service to individuals that put the adjustments around the person and allow them to take them with them as they move between jobs rather than it being more closely aligned specifically to an employer. It would mean that people with a disability had greater flexibility in the work that they were able to do, the jobs they were able to take and the opportunities they were able to consider.

Dr Ben Spencer: Thank you. Darren on that point do you want to come in on that, with reference to that previous point that you were making about work support and wrap around support.

Darren Ayres: I think Jurgen there has really hit the nail on the head. Certainly what we would do as an organisation is we go in and we actually first assess with the employee what are the actual barriers and then we wrap the support around, so we try to individualise. If you don’t mind me saying, sometimes the Government in these Access to Work programmes have a generic type of approach, a one size fits all, but actually what we need to be doing is looking at the individual barriers and addressing those directly and then that will bring confidence to the employer. When the employer knows that someone can go in and buddy or peer support that employee from day one, or even pre-empt that at the application/interview stage, and the support can be wrapped around, employers are more likely to take that educated risk, if you like. Because that’s how employers, whether you like it or not, that’s how they look at these situations, it’s about risk management for them, and that’s unfortunately the world we live in. So we have to educate employers around why it’s positive and it’s not really a risk it’s about actually individualising that tailored support, having someone that can advocate- if necessary- or liaise with the employer and to meet that gap. It has to be individualised though and everything we talk about, unfortunately, is too broad, too generic and therefore it just creates that gap and that distrust in the process of employing people with disabilities.

Dr Ben Spencer: Just before I bring in Susanne, Melissa and Jonathan, one question that has been in the back of my head during some of our sessions; is there a difference in terms of the size of employer and the experience that you have with them? Because I can sort of intuitively see how some of the things that we’re talking about might work well for a very large employer, are there additional barriers if it's sort of a one or two person employer or is that not what you find. What’s the scope in the range of size of employers in terms of working for you and does that add an extra barrier or not?

Darren Ayres: It’s a bit of a mixed bag. The bigger employers, the corporate employers, can go two ways. They can be reasonably cutthroat and won’t go anywhere near people with disabilities or you find the complete opposite and actually they have time, money and sometimes resources to look at individual support. Whether that is because it is a caring organisation or whether it’s because, dare I say it, tokenism I’m not 100% sure. In my experience it’s the smaller employers, family businesses, tend to make a bit more of an investment in their staff as a whole, I’m speaking broadly, but they tend to make more of an investment and they appear more willing to be open to the discussions around what support could be put in place; reasonable adjustments, Wellness Action Plans all the various tools that we could use to support people going in at work to work and sustaining work. It is a mixed bag, this isn’t necessarily a money conversation, this is an educational thing around taking that positive risk to actually support people with poor mental health or physical health. There isn’t really a clear answer to the question of what works with one company working with another, it’s very individual it tends to be down to recruitment managers and it tends to be around how good someone’s HR department is and what sort of policies they have in place within the organisation. Some organisations are getting better at supporting health and wellbeing at work, we’re seeing a bit of an increase in the policy change there. It’s still quite a way off where it needs to be, the last couple of years they are looking at health and wellbeing at work because they realise the vast amounts of money they’re losing by not educating themselves about these things, but we’ve still got quite a way to go. It’s a very multi-levelled answer unfortunately.

Dr Ben Spencer: Thank you that’s very helpful.

Steve McCabe: Ben, I just wanted to ask, I want to make sure that we don’t lose Jonathan on this Access to Work thing, but taking on your point there about large or small employers, what kind of employers, I’d just be curious to hear from Melissa and Susane who your employers were in the sense of how easy it was to talk to them about these issues. Were they large employers, small employers, were they used to people with disabilities or with health conditions? What would have made it better for you? Could we just go there and then come back to Jonathan on the access thing? Is that ok? Melissa, do you want to just tell us a bit about what it was like? What size of employer did you work for?

Melissa: My company is a fairly large employer. They’re a very successful wealth management company and so with regards to things that they could put in place, resources are not really an issue, they’re a very successful company. Education I think is very important, I don’t think that could be underestimated, but I don’t think that would help particularly in my industry, because my employer they’re kind of going through the things that they should do, like arranging meetings between me and occupational health, but then they’re just not taking that advice on board. Maybe it’s just the sector that I’m in, but accountability I think would be crucial. I think that they should have to be held accountable. And I know that there is a disability charter that companies can sign up for, and it’s got the disability confident tick when you apply for a job, and that’s great- my employer is not one of those- but I just think there needs to be a bit more accountability as well as education. Because as much information as I give them, and I give them loads, and they have loads of information from all my medical team but they’re not taking it on board so I think that at some point they just need to be held accountable for that.

Steve McCabe: Melissa, are you saying, I don’t want to put words in your mouth and I’m sure you’re much more tactful and diplomatic than me, but are you saying they were going through the motions or it felt as if they were going through the motions.

Melissa: Yeah, that’s exactly how I feel. They’re doing the bare minimum that they think that they have to do, but then they’re not taking it that step further to kind of keep me there. And if I’m completely honest I feel like they are trying to make me as uncomfortable as possible so that I do leave. And I am applying for jobs and interviewing and that kind of thing, but you know it’s not as easy as that. But yes, I do feel like they are trying to push me out because they don’t want to deal with it essentially.

Steve McCabe: Thank you for that. If we can just hear from Susane and then we’ll move back to Jonathan. Susane, what size of employer have you got and is your experience similar to Melissa.

Susanne McCabe: Well for me, the first time it was a kind of business with about 30 people, so quite a small business, and when they were taken over, they were taken over by a large multi-national IT company, I found my line manager very supportive in that business but really the directors further up were kind of preventing me coming back to work, and as I say it was only when we were taken over by the larger company, and they had occupational health, that that opened up discussion about what was possible. And my experience a few years ago, I was working for an economic development company, and so maybe about 1000 employers and they had support in place for when you were off work and helping you to get a phased return, but as I explained earlier the practicalities of that were that they didn’t want me to come back because I wasn’t able to offer enough hours. So while I again had really good support from my line manager, I just felt that the support from HR and the reality was very different. What struck me though when Ben was talking about education, it seems to be that employers can have a very narrow view in terms of you can’t do the job, you can’t do this part of the job, rather than looking at what you can do. When I was off work it put quite a burden on the rest of the team, and I think had my employer been more open minded they would have realised that actually they can take the pressure off the rest of the team by allowing me to do those 5/6 hours a week. And also, it would have been a lot better for my mental health because I really felt a great burden by being off. So employers understanding the effect, as Darren was saying about the importance of work for mental health I think employers need to understand that about how important it is maybe for someone to even be able to do a few hours a week could make a big difference and ultimately help their recovery.

Steve McCabe: I think that’s a really important point and we might well come back to that before we finish. Jonathan, I noticed that you were nodding when Jurgen was talking about Access to Work in the sense that it is a bit bureaucratic, and it’s too closely tied to the employer rather than the individual and maybe if you could get some of it a bit earlier it would be more useful- I think that’s a rough summary Jurgen of what you were saying. What would your take on that be Jonathan?

Jonathan Mears: I think Jurgen really touched on the right points really, in reference to Access to Work. I’m not sure if I would class it as bureaucracy in terms of the employment side but I guess in the fact that we have to really have that sense of encouragement to those companies that are going to be doing Access to Work. I think larger companies they don’t really realise that it’s there for a reason, it’s there to actually support but also they’re not, I guess they have that sense or essence. They think they’re going to have a huge bill to take care of and obviously they don’t want that, or it’s going to disrupt their business where in fact that’s actually completely false. Access to Work is designed to actually take part of that cost away and so the employer only pays a little bit and the employee doesn’t have to touch anything. And also the fact that there’s, again it’s not that one size fits all, with the fact that one person might need a support worker with them, they might need an access ramp for those in wheelchairs stuff like that,  whereas people like me these days I can happily work on a standard Windows laptop because it’s got magnification and speech built in so that’s only what £200/£300 if it’s the cheapest one. iPads as well. Decades ago, yeah you would have been talking about thousands of pounds for visual technology, accessible technology, I could understand that, but I think they’ve missed the point really in terms of how it benefits them as well as benefitting the employee. I think the other thing to consider is (unclear word), I don’t think it really follows through in terms of, if the same two people are after the same thing for example, if they can’t access public transport, they’ve asked Access to Work for taxis, going by some people that I know that do use it, some people were able to organise contracts so that they don’t have to cover the costs for going to and from work using a taxi, whereas I’ve heard one or two people say well when they’ve inquired about it through Access to Work the taxi companies have come up and said ‘well you’ll have to pay for each of your taxi journeys yourself, it comes out of your wage, and we’ll reimburse you at the end of the month’ which in some cases it doesn’t really do much justice. So again that sense of imbalance really I think comes into play and how can it approach that a little bit better.

Steve McCabe: Jonathan, sorry to interrupt, what is that about? Is that about different people interpreting the rules and the guidelines differently, is that what you’re saying is the problem?

Jonathan Mears: I’m just trying to think as to who might be at fault there, is it those that are actually doing the application, those that are saying that Access to Work is this, this and this or for the employers that are trying to interfere and managing their own rules and saying what employees can and can’t do with the Access to Work. I don’t know what the strategy is, I don’t know if you have to target both points or whether you have to look at Access to Work and think where we are going wrong with this and that.

Steve McCabe: I get a sense, not just from what you’ve been saying today, but from some of the other evidence that Ben and I, and the rest of the Committee have taken, that despite the fact Access to Work has been around for quite a long time I always feel that employers could do with a slightly clearer explanation of what it is, that it doesn’t have all these hidden costs for them, and it’s actually quite a good deal (nods from all participants). Listening to you maybe we could do with a slightly cheap and cheerful description of exactly what the rules and guidelines are as well because the taxi point sounds like an interpretation issue to me, but I’d be interested to follow that up. Ben, I’m conscious that we’ve got over 15 minutes, but time is marching on.

Dr Ben Spencer: I want to dig on this point again, I think the one that you picked up on after me about different sized employments because it strikes me that a lot of this, in terms of implementation is quite crucial. I was quite surprised to hear from your evidence Darren that there’s a disconnect between some of the big employers that are very cutthroat and so it’s very take it or leave it, and some are very positive. But drilling down in terms of the really small employers, so this is you know the sort of one man/woman band employers or the family businesses you mentioned recruitment and HR provision, I’m starting to wonder for organisations that don’t have HR facilities and services how is this working? Should it be recruitment agencies that are delivering this? And a secondary question, which is for the whole panel, is there a difference between people who are already in employment and support for employment or people who are gearing up to apply for a job and how is that playing out? If someone develops an illness while they’re working, are people then better off than people who are trying to apply to work in the smaller companies already in a situation where they’re living with disabilities. How is that working out in terms of the implementation from large and small companies. Jurgen, you’re nodding so shall I go to you first?

Jurgen Donaldson: Yes, more than happy to. So I’ve gone from working for a couple of the biggest companies in the world and I now work for a business with 6 people and I think the old adage that it’s easier to get work and stay in work when you’ve got a job is always true. I think certainly for myself developing a disability whilst I was in work was without question easier than if I’d done so out of work, I don’t think there is any doubt about that. I think certainly what we do at Radical, we work with a lot of small businesses who will look to hire people with all sorts of different protected characteristics, particularly data firms now who are on the smaller end, who have identified that people with autism for example, quite often have an innate ability to work with data, and we’ll help them with understanding how to manage people with autism. And I think businesses who are open to hiring diversely are open to finding out how to manage people diversely, businesses that don’t want to do it, particularly on the smaller end are not going to do it. Not because they’re scared of the cost not because of any changeable reason other than the fact they just don’t want to do it and I think that’s the unfortunate reality. Particularly if you then develop a disability within a business like that, that isn’t geared up to it, doesn’t know how to deal with it, doesn’t know how to handle it. So I guess just to allow everyone else to carry on, it does stem back to Access to Work for me. We need to be creating provisions around the individual rather than around the employer. The more we can do to create independence for the individual, we permit the individual to be able to make decisions for themselves the better they’re going to be able to get work and remain in work.

Dr Ben Spencer: Thank you, that’s very interesting in terms of perspective. Does anyone want to come in on that or Steve do you want to come in?

Darren Ayres: I completely agree with Jurgen. Big businesses are missing a trick, this is where the small businesses are doing well because they have the time to educate themselves and get to know the employee, despite the disability, and actually that works to their advantage because everyone has their own innate skills that can be offered. And this is where the big business misses out, they’re too busy worrying about efficiencies, and in fact it’s a false economy because the more you invest in your staff regardless of their barriers, the more actually comes back at the other end, and this is where big business unfortunately misses out. I completely agree with Jurgen, that’s definitely our experience here in Surrey as well.

Steve McCabe: Thank you. Something I just want to ask you because I’m conscious that at the moment this is about Ben and I asking you questions, and we’ve only got a limited amount of time, if I take it as read that you all agree that in an ideal world it’s better for people with health conditions or disabilities to be in work, assuming that the work is appropriate and isn’t making the situation worse, if just take that as read, if you were wanting to give a message to Ben and myself that the Committee could take back to Government that would make this better, and anything that we haven’t yet touched on, if there is a single message that we want to make sure be heard what would it be?

Darren Ayres: I think that the key message for me, if I could summarise it and I hope others agree, invest heavily at that front end of the process, it will pay dividends down the road with people with disabilities. We see this every day. I work in mental health, I work with the most unwell people in society, the national figure is only 9% of those people are in employment, only 9%, but 89% of those people want to work. 80% of the people that we work with, find work and stay in work for at least a year very successfully so that tells me very clearly with the thousands and thousands of people that we support, that if you invest in people at the front end of the process it will pay dividends in the end and that is the key message. Invest early, take the positive risk, wrap the support around early and it will definitely pay dividends.

Steve McCabe: And Darren when you say invest at the front end, I mean I want to be clear that I’ve understood, and I think I am clear, but I want to check what you mean by that is that if it’s technology any equipment, take care of it upfront, make it easy for people. If it’s Susanne’s example of I can do five hours a week, but that’s about my limit now, accept that. If it’s Melissa saying well, I can do a certain range of tasks but there are some mobility issues, accommodate that. Is that what you mean by invest early? Go with the person and make sure you create a viable work environment for them so that you can help them to get back into a rhythm of work, is that what you’re saying?

Darren Ayres: I think there’s two things there. When I mean investment broadly, I mean educate good quality recruitment staff, look at the policies of the employer, upgrade those policies around health and wellbeing, get good quality recruiters on board within that organisation who understand diversity well. When you start from that position, the trajectory moves in the right positive direction and it’s about educating the employer, making accountability, investing in physical- if needs be- adjustments that need to take place for each employee. But very often it’s not always about technology, it can be, but it can be about the culture within the organisation so that’s what I mean about the investment, get good quality people at the very beginning that understand barriers and disabilities, and then from that point onwards once you’ve invested at that front end there then everything else will move reasonably smoothly along the pathway. You won’t have to be so reactional down the road. People won’t get so scared when people become unwell because most employers don’t realise that most of their workforce is made up of people with physical and mental health problems, they just don’t know it. So if you invest and encourage employers at that very beginning process of application, education, accountability and policy that will pay dividends. So that’s what I mean about investment at the front end. It’s not just a money thing, it’s a culture and educational thing as well.

Steve McCabe: That’s really really helpful thank you. Susane.

Susanne McCabe: I was just going to say on the thing about policy, I really think that this has to come from the top of organisations and if you don’t have people at board level who understand the challenges of people with disabilities then it may well be very difficult to get policies approved and passed and funding in place etc. in the organisation if people on the organisation’s boards don’t understand disability. Now, I do believe that it’s the right person for the job so some would argue you should actively recruit to have a person with a disability on the board, we don’t need to get into that, but someone who is responsible for looking at that area of the business and actively supporting it, and then it comes from the top, because I think any change in an organisation has to come from the top. And reiterating on focusing on what people can offer, rather than what they can’t. My 74 year old dad in pre-COVID times is doing two half days a week in voluntary organisations, we don’t question that when someone wants to do seven hours a week work voluntary, but getting them back into work or getting them started on a job at 7 hours a week, it’s not treated the same. It doesn’t seem as easy, it’s hard to find work where you can do those limited amount of hours so I think we just need to open our minds about that and realise what the potential is, what’s on offer, what people can give and what can result from that rather than holding them back.

Steve McCabe: That’s very well put as well thank you. What about the rest of you, is there anything else that you came here to say and you want to make sure Ben and I hear and report back. Because this might be a one-time opportunity, I hope not, but who knows.

Jurgen Donaldson:  Disability be treated in a diversity conversation in the same breath as gender and race. For too long disability discrimination has just been the gently accepted reality of society. Only 10% of people with my level of eyesight are in employment, which is just utterly ridiculous to be honest and the reality is that employers get away with it because unlike what we seen happen in the last decade with gender and increasingly with race, disability is just accepted as being the sort of ugly reality of employment and until it’s treated in the same breath as when we talk about diversity that won’t change.

Steve McCabe: Yes, ok. So, stop making it a kind of afterthought or adjunct, which is how it feels, is what you’re telling me. I saw you nodding furiously there Jonathan.

Jonathan Mears: Yes, I completely agree with Jurgen. We’ve got Black Lives Matter at the minute which is hugely important obviously, and the gender conversation as well, I don’t want to be the one that says disability lives matter, I’m not that person that likes to go and cry wolf, I’m more of an action guy and I see action from the talk. But if you wanted something to take with you today, what is it going to take before somebody- not me- but somebody else probably is going to cry ‘disability lives matter’ so something to think about there. And Jurgen’s right in terms of the same conversation it has to be talked more in that same vein as gender and ethnic backgrounds. Personally I think we have to look at recruitment, I agree with the earlier colleague as well. To have people who understand, people that are put in position, or recruiting for the fact that they might need people who are able to engage with those people that use the products, so use the services, who are disabled, or fill in the gaps in the company where that knowledge is key, not just be dismissive when it comes to recruitment. We have that question of ‘do you consider yourself to have a disability?’ in application forms, that’s there as a legal requirement companies do it, but they don’t consider disability when shortlisting for interview. They will interview those that meet the minimum requirements for an interview under the Disability Confidence Scheme, that is a legal requirement ,companies do it but again there is a lack of opportunity because they’ll tend to go for that non-disabled person, who has got 5-10 years’ experience and they believe they’ll be able to act a lot more in terms of the job that they’re recruiting for so that has to change for me.

Dr Ben Spencer:  Can we just bring in Melissa quickly, as I know that we’re quite short of time, and I want to make sure that nobody misses out.

Melissa: I think everyone has made so many good points, and I think Darren has summed things up really well, that it’s a combination really of education and accountability and all these kind of things. Something that has occurred to me while we’ve been speaking is that I think it would be really important to empower individuals a little more to know what they’re sort of skills are and what they do bring to the job. Because I’m sure all of us, even though there are some things that we might struggle with, so I might struggle to go up and down the stairs all day and I struggle with complex tasks and multi-tasking, but I have other strengths and I think that it would be really important, and really beneficial, to empower individuals to know what strengths they are bringing to the jobs and empower the employers as well.

Steve McCabe: Melissa, can I interrupt for a second. I agree with that, how would you suggest would be the easiest way to do that.

Melissa: I don’t know to be honest. Maybe more conversations between HR and the individuals or the Citizen’s Advice Bureau and that kind of thing. I think that it has to a combination of the employer recognising that just because you have a disability it doesn’t have to be this negative thing, you could view it as a positive thing, like this person is actually is so good at dealing with this type of information and see it as a positive. Culture shift is a massive problem here, I think. But how you go about implementing that I’m not sure.

Steve McCabe: I was thinking when you were talking of somebody I know who does some work with youngsters who have learning disabilities, and they were saying to me they always start by saying ‘what is it you can do?’ and they work through this long list and they refuse to move to ‘what is it you can’t do?’ until they’ve worked exhaustively through the first list and I just wondered if it was something like that that was in your head when you were describing it.

Melissa: Yes. I mean I was thinking more of just empowering the individual to sort of speak up and big up their own skills I suppose.

Steve McCabe: it is the classic example. Do you either start with the deficit model in your head or do you start with the idea of what people’s abilities are and it seems there is a bit of a choice in this. I am conscious that we may get returned to the main group at some point. Ben are there any last points that you wanted to raise or anything that you wanted to tease out?

Dr Ben Spencer: The only thing that I wanted to say was to thank everyone for their evidence and the very frank and full way that they’ve described some very personal stories in terms of the difficulties you’ve had in the employment system. It’s just a note that if there was something that popped into your head afterwards that you think you would like to give a bit more detail on, please do write into the committee because we will have sight of that, and particularly on some of the points that we haven’t been able to pull out in a bit more detail, I’d be really keen to see anything else from you, which you can send through via email, which would be very helpful.

Steve McCabe: Can I just say the same thanks. Thanks for being so frank and open with us today, it has been really helpful. We don’t always get this sort of opportunity because of the way the Committee is set-up so I’m equally grateful and likewise if there is anything that pops into your head afterwards and you think ‘why didn’t I tell them that’ just contact us and let us know. But it has been extremely useful to hear such personal accounts of things and it does make it much better for the likes of myself to get a grip of what people are saying so thanks a million,

Jurgen Donaldson: Thank you for listening. It doesn’t happen too often.

All participants: Thanks.