Good afternoon and welcome to the Women and Equalities Committee. Today we are holding the first oral evidence session as part of our inquiry into flexible working and disability. This inquiry forms part of the Committee’s series of inquiries into equality at work and follows on from some of our other work on equalities in the workplace. I am really glad that we have a brilliant and large panel with us. We have Clare Ogden, head of support services at Action for ME; Fazilet Hadi MBE, head of policy advice information at Disability Rights UK; Patricia Stapleton, senior policy manager at Arthritis UK; Alison Thwaite, head of employment services at the Down’s Syndrome Association; and James Taylor, executive director of strategy, impact and social change at Scope. Welcome to you all. The Committee will ask questions and there will be some follow-ups. If you want to go into greater detail about anything than we have time for today, you can submit written evidence afterwards. If you leave here thinking, “Oh, I should have said that,” the same rules apply; you can send it in writing afterwards. I am going to hand straight over to Rachel.

Thank you all for joining us today. It is a very hot day and London has been difficult to navigate so we really appreciate you being here, and Clare for joining us online. It is always difficult when we have big panels as people feel they need to get in on the first question. You do not; you will all have your opportunity. Fazilet, you and James both have a disability and have built successful careers. To what extent have you required flexible working arrangements to overcome barriers? What are your experiences of accessing the flexibilities that you need?

When I reflect on my world of work, and I have worked for many decades, the single thing that has helped me most has been the Access to Work scheme. When I started work, digital and computers were not a thing. Obviously things became a bit easier for blind people with the advent of digital technologies. That enabled me to present myself to an employer as someone who could work on a level playing field to others. That was really important and is the standout factor for me. In terms of flexibilities, it was not so much that I needed flexibility in terms of the hours or which days of the week I worked and so on. I needed people to change the way they did things; for people who were presenting things to speak to their slides; people who were sending me documents to use a narrative word format and not complicated tables; people in team meetings to go round the table and say who they were. As I say, for me the flexibilities were not about hours; they were more about adapting to what I needed to be part of the team and create a more inclusive environment for me.

James, is there anything you want to add?

I have a physical disability and a different experience to Fazilet. For a long time I thought it was about me trying to get a job despite my disability. My world view has now completely changed; it is about getting a job because I have a disability and being proud of it, and maybe we will talk about that a bit more later. I am really privileged to work for a disability charity and effectively get paid for being disabled and talking about my disability. Not every disabled person can say that. When I was younger, certainly in retail and temporary jobs that were often physically demanding, I would often mask or hide things that I needed because I did not want to ask for them. I felt that I was perhaps putting the employer out of its way to do something different for me. That is an experience that lots of young disabled people still have despite the progress we have made. Personally, just on flexible working, I have certainly noticed a difference. It takes me a long time to get to places, to walk places, and to get around. Having the flexibility to work from home has enabled me to be far more effective in my career.

The things that you are talking about on those first jobs on the ladder are really crucial because they could keep disabled people out of work for long periods of time.

You do not know what support is out there because you have not been told in secondary school, college or wherever. If that information and awareness about Access to Work and other schemes is not shared, you just do not know. A lot of young disabled people probably bottle it up and prefer not to talk about it because they do not want to be seen as an outlier or to be rocking the boat; they just prefer not to ask at all.

Alison, as we have already seen, flexibility is not a one-size-fits-all. Can you describe how disabled people’s needs for flexibility can be very individualised?

We take a very person-centred approach at the Down’s Syndrome Association; we want to get to know the people we support. We do the usual things—vocational profile and employment passport—but we want to embed with employers the importance of flexibility, not just flexible working patterns but more the detail around being flexible and building in reasonable adjustments because reasonable adjustments are mandated obligations that employers have to consider and put in place for people with disabilities. We find everyone is different. Every one of us is different in different ways and the support that we source for those individuals is very important. We are looking for the right job with the right level of support.

Patricia or Clare, do you want to come in?

People with arthritis have a series of conditions; it is not just one condition. It can affect people of all ages, but primarily for people over the age of 45 flexibility can often mean the difference between staying in work and leaving work. We have heard testimony from people we support that their employers do not give them any flexibility, limited flexibility or sort of a one-off flexibility. They do not cater to the fluctuating nature of the condition. There is a real challenge and lots of barriers about how people stay in work. People with arthritis know what they need so it is actually asking people what they need so we can support them. It is having that open, proactive approach and being really clear—speaking to James’s and others’ experiences—about an employer saying, “We are Disability Confident,” or, “We are a flexible employer.” It is about being really clear up front at the beginning of the process for recruitment,

Clare, I imagine that is similar for the people you represent.

Yes, absolutely. There are issues with a fluctuating condition but also the fact that ME is often invisible. Often employers do not understand why someone can work one day but not another so a long-term and, crucially, personalised approach to support is absolutely essential.

Alison, could you describe the work you do to support employers to provide flexibility for people with Down’s syndrome?

We work with employers from the start. We do not look at jobs that are advertised. We contact an employer to establish a relationship first, and then we talk about the kind of support that we can offer them. The WorkFit programme is quite unique in that we do not use job coaches as a supported employment model. We ask the employer to designate people within a team to be a workplace mentor or buddy for somebody coming in. We provide them with quite comprehensive training about the condition and how they can support a person who has Down’s syndrome at work. Then we commit to ongoing support for as long as that person is with the organisation. That gives employers a lot of reassurance and confidence that if things go well they will not need us, but if anything does not go well we are a phone call or an email away and are able to support them.

Clare and Patricia, can you describe the impacts of fluctuating health conditions such as ME and arthritis on people’s needs for flexible working arrangements?

ME is a fluctuating condition and symptoms can worsen significantly after even small amounts of physical and mental exertion. This is known as post-exertional malaise and it is often delayed by hours or even days. For people with severe and very severe ME, the amount they can do without triggering post-exertional malaise is very small and this group of people is just too ill to work. Those more moderately affected can use a self-management technique called pacing and that is focused on keeping activity levels within manageable parameters to avoid triggering post-exertional malaise. It is not an easy thing to do; it takes practice and support. That is why flexible working can be the difference between staying in work and leaving employment altogether.

Similarly with arthritis, depending on the type of arthritis, people can experience pain and fatigue. It can really impact their energy levels, be different day to day and it is invisible. Someone might be fine one day and not the next, or fine one week and then really struggle the next. The problem is if they do not tell their employer that they are not feeling well, it gets cumulatively worse and they are likely to have to take sick leave. We advise that flexibility is really important. It helps because it basically means that people can adjust their hours to start later in the morning if they are tired, have not slept well, have pain, or need to attend medical appointments. There is a lot of medical admin for people with arthritis who, for example, attend rheumatology appointments or have bloods taken. Flexibility with hours, start times and shift management are really important. The sectors where people really struggle tend to be the service delivery roles. We find office-based roles tend to be a bit more amenable to these types of things. They are not always exemplary; there are some outliers as well.

We will discuss the legal framework for reasonable adjustments later but in broader terms how well understood and catered for are the needs of people with fluctuating health conditions at work? Clare, I come back to you.

We know that the covid-19 pandemic made flexible and remote working more widely accepted but that is still not translated into meaningful change for many disabled people. Access to flexibility often still depends too much on employer discretion, workplace culture, and quite rigid assumptions about what different roles require. An example is back-to-the-office mandates. That is very draining energy-wise. The commute, the noise, fixed hours, and the lack of a place to rest mean that it is really inaccessible for many people with ME. Earlier this year we surveyed 5,000 people with ME. The majority were not completing any paid work at all. Of those who were, only one in 10 were able to work full time.

Similarly, arthritis and other fluctuating conditions are really poorly understood by employers. It was identified in an earlier inquiry that there is a culture of fear around asking people questions about how to support them both in work and by the person concerned. It is very poorly understood. Just because of the invisible nature of it, there is a real lack of knowledge and support around this. We would advise Government guidance such as advice and best practice case studies because it is an unfortunate situation to be in. With arthritis we have heard time and again that it is poorly understood and employees feel poorly supported as a result.

Is there anything else that we need to be aware of with respect to this, specifically for women or indeed any other protected group when we are considering this?

ME disproportionately affects women. Clinical and epidemiological studies show that women make up 75% to 85% of those diagnosed. There is a well-documented gender bias in healthcare. Women with ME take longer to be diagnosed and they might find that their symptoms are dismissed, which means they have greater difficulty in evidencing their need for support. As panel members have already said, it takes a lot for someone to say they need support, so this makes it even harder.

Similarly, more women than men experience MSK conditions and arthritis. It absolutely affects more women than men. We also find that when women hit perimenopause some symptoms can be very similar to someone with rheumatoid arthritis or another fluctuating condition. It can be dismissed as just pain or fatigue; it is often missed. We do not find there is enough knowledge about it, even within the medical community, across the board. In terms of women’s prospects at work, we find that women are more disproportionately impacted by things such as having to work reduced hours or caring responsibilities. In the research we funded we found that 20% of people with arthritis were likely to be out of work. Those with lower levels of education, particularly women, were even more likely to be out of work, at over 50%. There is a real issue about later-in-life poverty and things such as that and it is often down to lack of reasonable adjustments and flexibility.

I just want to explore the environmental conditions. You have talked about the individual pacing, but also the responsibility that you think should be on the employers around the working environment. It is a very hot day today—it has been hotter in here—and it is incredibly uncomfortable to work in. How does extreme heat or cold affect both arthritis and ME?

Extremes of temperature can have a significant effect on people’s symptoms, especially people with ME who may also have a common illness at the same time called PoTS. It can mean that symptoms are more severe and it can make it much more difficult to function. We are hearing from people who are really struggling in this weather.

We find that the hot weather is very energy-sapping and if you are dealing with fatigue it just makes it harder. In this type of weather we would really advise that people should be able to work comfortably from home if they can or get an adaptation in that respect. Travel is the trickiest aspect. Public transport is exhausting at the best of times, especially coming into big cities and things such as that, and particularly in hot weather. The cold weather is really hard on bones and joints. People with osteoarthritis really struggle with the cold; it is slightly different.

You have mentioned the extreme cold. I have relatives with arthritis and they really struggled with it when it was cold but the heat is, as you say, energy-sapping. We have minimum legal requirements on temperatures in cold weather and cold environments but we do not currently have a maximum workplace temperature. The way that these patterns are going—continued heatwave after heatwave—would both your organisations recommend that a maximum workplace temperature be put in place, or would you like to see that?

I cannot give clear evidence to what it should be but people should be as comfortable as possible at work, 100%.

We would support any measures that are put in place to support people to work within manageable parameters, and that would include temperature.

Thank you, panel. This is already very interesting. James, what steps would you like the Government to take to ensure that employers across sectors are, wherever possible, designing flexible jobs that suit a greater range of disabled people?

On a surface level, as many steps as possible really. There are many things they can do. A couple of years ago Scope surveyed 2,000 disabled people. Some 71% said that being able to work remotely made it easier for them to manage their disability, while 60% who had lost a job said they had not been offered any chance to try hybrid or remote working. Remote working is definitely one thing employers need to consider more. Second, the Government need to consider that the way we experience work now is very different to how we experienced it 20 years ago, or even five years ago. The world of work is now completely different. Legislation, guidance, and policy have not kept up with how people work and how people experience work. We have talked about back-to-office mandates. We have a very rigid expectation of what people should be doing and the hours they should be doing it between. From our experience of speaking to disabled people—this is something that would benefit everybody, not just disabled people—having flexibility in when you do your job, where you do it and as long you do it should become the norm. That is something Government should explore. Finally, there is quite rightly a very big push from Government and the media to get people back to work. Rightly or wrongly this is targeting certain groups of people but there is definitely an issue where we have lots of disabled people out of work. Some people will never be able to work because of their condition. Many, if they had the right job that was flexible, near where they lived, did not have to travel very far, was at a decent temperature and so on, would be able to work. When you go on the Government jobs website there are not many jobs that are flexible, hardly any that are remote, and very few that are hybrid. We have a huge issue where 1 million disabled people are out of a job but want one. They go to the Government website to look for a job but hardly any offer flexible working. That feels like something Government could probably address quite quickly. If you have a big policy push to get more people into work you need to be sorting out the jobs to put people there; otherwise you are just pushing people into a system that is not getting them a job.

In that sense, we should be leading by example. Do you think there are sufficient incentives for businesses and other organisations to open up these jobs, to make them more flexible, and to have those working conditions?

Certainly as civil society we and others could probably do a better job of demonstrating the business benefits of having a diverse workforce, particularly a diverse disabled workforce. Research in America has shown that companies with a high representation of disabled people post greater profits, are more efficient, and have better cultures. I am unaware of research that replicates that here but we know from employers we speak to that they say the same thing.

Fazilet, what flexibilities do people with disabling impairments and health conditions need at the job-seeking stage, for example, job advertising, application, and recruitment processes?

Do you mind if I just add to James’s point before I come to flexibilities for recruitment?

I do not mind at all.

I endorse everything James said but I just want to add a couple of other points. Since they came into power in 2024, the Government have said that one of their big objectives is to get more disabled people into work, yet there is no plan to close the disability employment gap. You need a plan. In that plan we perhaps need a bit less on blaming disabled people or penalising them through the benefits system and a bit more around what changes Government need to make and what employers need to do to live the message of flexibility. From what you have heard from Arthritis Care, the Down’s Syndrome Association and Action for ME, unless the workplace is different you will not get disabled people back to work in large numbers. I just feel the lack of strategy with one of Government’s key aims is a real gap. Another gap is the legal framework. We have a great duty to make reasonable adjustments under the Equality Act 2010—fantastic if anyone can enforce it—and we have reports from Unison, the TUC and unionised workforces that they cannot get their requests for reasonable adjustments answered. There is something wrong with the legal framework. We now have the Employment Rights Act 2025 that gives a legal right to flexibility, or at least a presumption of flexibility until the employer says different. We have the two side by side—the reasonable adjustments duty and the right to flexibility—different but complementary, and it is really not clear. The reasonable adjustments duty has no enforcement mechanism and Government are currently consulting on the enforcement mechanism for flexible working. It is just messy. It does not help disabled people who want to assert their rights, and it does not help the employers to understand what their responsibilities are. Finally, in terms of what Government should do, the Fair Work Agency set up under the Employment Rights Act could have a role around this area of flexibility and reasonable adjustments. It should not be seen as something different and sit somewhere else because it is to do with disabled people. Some sort of enforcement agency would really help with reasonable adjustments. The burden should not be on us as disabled people. Just coming back to recruitment, it is really difficult because most people who have been in the workplace for 20 to 30 years develop or acquire a disability or a health condition. They have enough trust in their employer to begin to negotiate what reasonable adjustments and flexibility looks like. We see employers such as the NHS and others really wanting to keep their workforce because if talent walks out the door they are going to struggle to get new talent in. There are some good things happening for people who are maybe already in a job and trying to negotiate around acquiring a disability or a health condition. When it comes to recruitment, that is very different. As James was saying earlier, there are vanishingly few jobs advertised with any sort of flexibility at the advert stage. As a young, or otherwise, person looking for work you feel powerless in this situation. You do not really want to stand on your rights in the Equality Act. Without some kind of encouragement or enforcement for employers to design jobs differently I do not know how we are going to break the logjam between young people who want to get into work, but need adaptation to do that, and employers that want to recruit in traditional ways as they have always done. Employers need to think about more part-time work and how to get the job done in non-traditional ways. There seems to be an impasse, and Alan Milburn touched on it in his recent report. It is a real problem for young people and others who are making their first step into the job market. Until you have a job, it is very hard to show that you can do a job. That transition is crucial and needs a lot more thought.

Patricia and Clare, do you have anything to add? To what extent do you think people are being put off applying for jobs because of conventional or rigid application and recruitment processes? Is there anything the Government could do to address this problem?

The challenge is that if companies do not say up front at the recruitment stage in the advert that they offer flexible working, reasonable adjustments, and have a culture of inclusive HR policies, people just do not know if it is the right job for them. There is often a fear about even applying because the advert puts people off and people are de-selecting. I agree with Fazilet that there needs to be more of a push for companies to be a bit more explicit about what they offer. Offering hybrid working and job redesign is really important, and being really clear that it is a safe place and that reasonable adjustments will be offered. It should absolutely not be about people being present from 9 am to 5 pm; it should be about what they are doing, their outcomes and what they are producing.

There is still a really limited understanding of the social model of disability, which means many employers continue to think about disability primarily in medical terms. Instead of saying, “How do we accommodate this person’s limitations?” it should be about asking, “How can we design this role so that a wide range of people can succeed in it?” As James said, diverse teams mean better outcomes for businesses, and I absolutely agree that clear information about flexibility and adjustments is needed in recruitment materials. Lots of people are put off because of the stigma around ME. We offer job share wherever possible. We are clear that we have a flexible working policy and we include that policy in the job pack. There needs to be a bigger push to support employers to do that and to show them why it is valuable and the benefits that it can bring them.

Alison, I have also supported young people with Down’s syndrome when they approach working age, so I am very interested in digging into Down’s syndrome and learning disabilities specifically. What support do people with Down’s syndrome and other learning disabilities need to navigate the job applications and interview processes?

It is very rare that we find an employer producing a job in a format that is accessible for somebody with a learning disability. It is very unusual. Hence, at the Down’s Syndrome Association, we do not look at advertised jobs. We contact an employer. We tell them about the support that we can offer and we ask them if they are willing to carve out an entry-level role on a part-time basis for somebody who has Down’s syndrome. We let them know about all the support we can offer them free of charge to do that. It is about helping them to understand things such as reasonable adjustments. There is fear and anxiety with a lot of employees around reasonable adjustments. Again, that is something that Government can help with by explaining that it is not an expensive or long-winded process. We can go into an employer site and offer three or four reasonable adjustments very quickly and simply that would make a huge difference to a person who has Down’s syndrome going into work. I totally agree with James about a diverse workforce being a strong workforce and some employers understand that. They see the team building, improvement in staff morale, positive response from customers and those kinds of things so that is all very good. One approach where we are slightly different to others on the panel is that for many of the people we support, flexible working is not necessarily going to work. The majority of people we work with want to be in a face-to-face environment rather than work from home. They want to work set days and hours across the week because they need structure and repetition. I just want to put that forward for you to bear in mind for people with learning disabilities that structure is really important in flexible working. We had a couple of people working from home during the covid pandemic but they were very prescriptive jobs. For the vast majority of people face-to-face support from their team in the workplace is really important.

That figure of 6% of people with a learning disability being in any kind of paid employment has been really sticky for a long time. Do you think more needs to be done to make mainstream recruitment processes more inclusive for people with learning disabilities, or should it remain as a targeted approach?

The targeted approach works really successfully for us, and our retention rate is 92%. People going into permanent jobs are staying in jobs, and a lot of that is down to the ongoing support that we commit to because we know life happens to people. You can be in a job for years, things can be going very well and then something happens, maybe bereavement or moving home. For somebody with a learning disability anything that is a big change in their lives can generally be very disruptive. There are different elements. Employers still contact me and say, “Could we invite some people with Down’s syndrome to an assessment day? Come and spend the day with us.” I have to explain that it is not really a suitable accessible format for somebody with a learning disability. They need a one-to-one discussion, a tour of the site, maybe to talk to a few people, and look at the kind of work available. Assessment days are not viable. It is the whole job design. We tend to start with a blank sheet of paper with an employer and hence we do not look at a job they have advertised. We say, “Let’s start with a blank piece of paper, look at your business and what your needs are and the kind of jobs you have now,” which are usually entry-level jobs. “Let’s look at those tasks, break it all down, and work together to carve out a role that someone with Down’s syndrome could do.”

Alison, I want to ask about post-16 education for people with Down’s syndrome and other learning disabilities. Is there a gap that is not being successfully filled in terms of skills and progression into employment?

We hear a lot of different variations around people coming out of school or college with very little in terms of employability skills. Parents tend to describe the end of college as a cliff edge; they do not know what is going to happen. That transition is often very worrying. We talk to parents regularly about what we call a presumption of employment. Through education, health and care plans—EHCPs—and discussions with education, social workers, whatever that support network is, we encourage them to talk about the presumption of employment. My expectation is that my young person will be going into work. How can we support that person to achieve that? We think that is absolutely vital from the age of 14. We encourage people to register with the WorkFit programme from 14 onwards to look ahead, and we might do some work experience for them in the course of their academic career. That presumption of employment is absolutely crucial.

If there are potential employers listening to this, what is the right approach for them to take? They could have been very well-meaning in asking people to come to their assessment days.

It is very individual. We would want them to talk to us and we would be able to advise them. Everything we do is free of charge and without any obligation. We would be happy to offer advice, resources, training, anything that would help them to maybe adjust their traditional approach to recruitment and look at more accessible options.

Is that the same for everybody else? What would you suggest? What could be done differently if assessment days and the general recruiting pattern is not accessible to people?

Again, it is about that individualised approach. We have resources that support people with ME to have these conversations about what their needs are and how those needs might be met. The challenge is that the onus is on them to do that so we are also here to support employers that want to think about what support structures they want to put in place for recruitment to support people and put reasonable adjustments in place. Internally, we have templates for this. We have training sessions for managers because we want to make sure that we are applying the reasonable adjustments duty fairly and consistently while still taking an individualised, person-centred approach.

Similarly, we take a very person-centred approach. In our own workplace we have a policy of asking people up front if they need any reasonable adjustments at the time of interview. We are really clear about that. We offer online interviews, often send out interview questions in advance, meet with people and things such as that to make it as accessible as possible.

We will come to a specific session on reasonable adjustments in a bit. I will leave it at that and hand over to Richard.

Fazilet, you have noted a Catch-22 situation where managers need to trust disabled workers before granting flexible working requests before they can prove themselves in a role. How can disabled workers escape the situation where what is possible is not being provided?

It is really difficult, and that is why we mentioned it in our response. I was talking earlier about when you are a disabled employee and you have achieved a level of trust and co-operation and are valued within the organisation. Then when you ask for things of course it is not in your gift to make it happen but somehow the negotiation is on a more equal basis, let us say. Sometimes though some disabled people feel that trust is not there because their performance has not been as good as it could be because they have not had the flexibility to begin with. They are in a bit of a Catch-22 because they cannot demonstrate that actually they could deliver the outcomes of the role if the role was designed a bit differently and they had some more freedoms within it. It is very hard to know how to get out of that. You would have to take a few steps back and have employers that were inclusive from the top. I know there is a lot of talk about how line managers need to be inclusive and support and develop their staff but actually most of us who are disabled find that it is the overall culture of an organisation that makes it inclusive. If it has an inclusive culture from the top down—from the CEO to all the HR professionals—then the line manager will have that freedom, desire and ambition to make it work for you as an individual employee. Employers have to take a few steps back from that Catch-22 situation and look at what is out there to really help them navigate situations that are quite complex, particularly for small and medium-sized employers. There is no agency out there that really supports employers. What the Down’s Syndrome Association does is great but perhaps that needs to be done for many more disabled people at scale. Employers really need to think about how jobs could be redesigned, how things could work differently, and how an employer could still get the business outcomes. They need to think much more creatively about whether the jobs they shape are flexible, part-time, remote, and if other changes are needed by staff members. We will never solve that problem. At present it is hard to solve it for the people it is happening to without taking a few steps back.

You mentioned culture and sympathetic line management. I have just come from an evidence session on eating disorders and unfortunately there are a lot of parallels around mental health, flexible working and very similar outcomes. How would you train line managers to be more sympathetic? What could you do? You are right: the culture has to come from a CEO, but at the moment it is just not happening. Disabled people wanting to join the workforce is not a new phenomenon. Why do you think we are not making any headway? That is to anyone, but starting with Clare and then Patricia.

Managers can often view flexible working through the lens of organisational policy. They are worried about getting it wrong and that is what training can address. It can help them understand that, for disabled employees, flexibility can be a reasonable adjustment. It is not something to just be discretionary and training can encourage the collaborative, solution-focused approach that is needed. Some conditional disability-specific training can also be helpful to address assumptions that perhaps fluctuating performance reflects poor commitment or capability. In terms of the Catch-22, there is a wider issue of stigma around disability, full stop. All good employers start from a position of trust that they have secured the right person for the right role and that they are competent to do the job, and that should not be any different for employers of people with ME or other disabled people. There is something about us universally needing better understanding of disabilities and long-term conditions.

Absolutely; I would echo that. I find the role of line managers is absolutely pivotal. It can be the difference between someone staying in work or leaving. Often, if line managers do not have the right information or organisational support they will not be able to support that person. We often find that if there is even a slight glitch in terms of how they work with that person they can feel very unsupported. I would absolutely agree. There needs to be more national guidance on these types of things, with advice, information and best-practice case studies, especially around fluctuating conditions and other conditions that are hidden and poorly understood. It should be something the Government are working on. It should not be down to individual employers to make that decision.

Several of you have mentioned the existence of good practice. Could you describe good practice and how you would persuade more businesses to start from a position of best practice? What do you see as the handbrake to that happening?

To be honest, flexible working is a retention tool. It keeps people in work. We know that people perform better when they are able to attend medical appointments without having to worry about using annual leave or being sanctioned for missing too much work and so on. If they feel supported they are less likely to go on long-term sick leave. We think it just makes sense. Recruitment is expensive. Finding the right person for a role is expensive. It is difficult. You just have to create that environment where it is okay. We have heard from people who work in all sectors, particularly the NHS and service delivery roles, where they have to use their annual leave to go to appointments. They do not have enough time then for their wellbeing so they end up working in a very adversarial environment. It is just not appropriate.

Clare, same question to you, stressing the handbrake point: how can we push the button on the handbrake and let it go so that more employers go straight into best practice?

I would echo what has been said, and that it starts with recruitment. There is a whole process from job design to recruitment to supporting managers to do it. At Action for ME we devised some flexible working principles with our team about where we choose where we work best. Those are in our recruitment packs; I call it the handbook. We are really clear about our duty and willingness to make reasonable adjustments. We want a creative and supportive environment for disclosure. We want to provide reassurance about confidentiality and keep the focus on adjustment needs rather than diagnosis. It is about showing that the framework means that you get the best out of your employees. Again, it is that social model: what are we doing to help people thrive?

That is really helpful. I will ask this question to Alison first, but it would probably be fair to let everybody else answer. To what extent does the Disability Confident accreditation scheme provide an effective template for the supportive conversations that people need about their flexibility at work?

I was just going to mention Disability Confident so I am glad you brought it up. In principle, there are a lot of positives but Disability Confident does not go far enough. It could go much further to address the fears of employers around reasonable adjustments. It could do much more in terms of signposting employees to specialist support. There is a lot of expertise in this room: people who genuinely want to get people into jobs and help keep them in jobs. It is a huge opportunity to develop Disability Confident to make it much more fit for purpose for employers to use. There is that fear, that lack of understanding. In our training we talk in great detail about the condition of Down’s syndrome. We talk about what this person might experience, how they might feel, how they might communicate, and how their buddies and team members can communicate effectively with them. We go into quite a lot of depth, and you can see what a change that makes in terms of perception. People in the team feel much more confident, prepared and ready. At the moment, Disability Confident lacks teeth. It needs a bit more oomph, bite, and bolstering. It needs to be stronger but it has potential.

If you had a magic wand in relation to Disability Confident and accreditation, what would be your wish?

I think exactly that. Much of what we are talking about is really about people feeling very awkward talking about disability. Something we do a lot at Scope is to try to remove that awkwardness and focus it on the social model of disability. Rather than, “How can we help you manage your condition?” which inherently puts the disabled person in a negative space, it is, “What can we do to support you to thrive?” We are coming up to a decade of Disability Confident. Thousands of employers have joined it. The disability employment gap has not shifted in over 15 years. The time is right to have a proper root and branch look at how well the scheme is working. Fazilet has talked about there being no national strategy for disability employment yet the Government have Disability Confident, the Youth Guarantee, and access to jobcentres and work coaches across the country. We want to see how it all joins up. How do you take someone out of work at a very young age and support them through the system into employment with a Disability Confident employer? We would like to see more teeth around levels 2 and 3 and some minimum thresholds for the proportion of the workforce that is disabled. We know that pay gap reporting legislation on race and disability is on the cards somewhere and hopefully that will come into force at some point. Requiring employers as they move up the levels to meet certain thresholds would be very welcome. Then, reporting on the satisfaction of disabled colleagues’ experience with reasonable adjustments requests. That is just a handful of things I would suggest.

James or others can correct me if I am wrong, but actually you do not have to employ any disabled people to have the Disability Confident mark at the moment.

No, you do not.

That says it all. It is a good envelope that needs something in it to make it a bit more real and significant. There is no doubt that disabled people are not confident to say they have an impairment or health condition at work. In fact millions do not. As Sir Charlie Mayfield found out, that means you cannot have the conversation with the employer early enough because the disabled person is worried about how the employer will respond. Clare was talking earlier about the stigma of disability and that is very real for a lot of disabled people in work. I always remember the NHS staff survey where 24% of the people completing it said they were disabled. If you look at the employee record for the NHS only 4% or 5% say they are disabled. It gives you quite a good indication that millions of disabled people are not comfortable talking about impairments or health conditions at work. People legitimately fear the reaction, plus employers with very little idea about how to do things differently need a lot of help to shift the way they do things. The Mayfield review touched on the lack of discussion between disabled employees, or people acquiring impairments and health conditions, and the employer at an early enough stage but actually the Mayfield review only included 120 vanguard employers. It is not at the scale to really shift things. The Government want disabled people in work, but the scale of their ambition just does not seem big enough.

I think there was a study last year among Disability Confident leaders. There was no compelling evidence to show they were recruiting more people with disabilities than their contemporaries.

I have a quick question about the work on promoting more disability-inclusive workplaces. We have talked about employers, employees, organisations, and the fantastic work that you do. We have not talked about trade unions. Is there a role for trade unions to promote disability-inclusive workplaces at all? Have you seen any good examples of that?

I cannot give any examples of that. We talk to employers about positive action. We talk about ringfencing roles for disabled people. There is again an education piece here. A lot of employers have no idea what we mean and do not believe that they are able to ringfence a role for a person with disability, so that is part of the education piece.

Unions play a critical role in workplaces for employees and employers. I am unaware of anything specific, but I would like to think they are supporting disabled colleagues who are experiencing difficulties. They have a role to play in helping us get more disabled people in work.

It is not great that none of you can point to an active campaign currently.

There are two things. First, most ordinary people are not particularly aware of their legal rights. It is very difficult to communicate them and it is even harder to use them. There is a communication issue. For people like me who work at Disability Rights UK, reasonable adjustments trips off the tongue but I do not know how many disabled people in work would even use that term. That is an issue. We could do a lot more to communicate reasonable adjustments to employers and to disabled employees. It may be a bit to do with the last question but we see many disabled staff networks in some bigger organisations and perhaps they have a role as well. Secondly, enforcement is an issue. I have the right to a reasonable adjustment at work but do I really want to litigate that right? Probably not; work is quite a delicate ecosystem in terms of the power relationship. The employer has more power than me as an employee. I want to be somewhere where the employer recognises that it is an obligation of theirs to make that adjustment. I do not want to bring a case; I do not want to start a grievance. It may be more important that employers understand what a reasonable adjustment is. Interestingly, the Employment Rights Act will make flexibility more known about because it is not a right that you get from being a disabled person. It is a right for any employee to ask for flexibility. The presumption is that you will get it unless there is a good reason not to. How do disabled employees, within that broader flexibility process, exert their stronger Equality Act right to reasonable adjustments? It is not very clear how that is going to play out.

Yes, I would like to echo what Fazilet just said. People are unaware of their rights but also people with arthritis might not see themselves as disabled. The Equality Act is really vague. There needs to be absolute clarity on the definition of disability under the Equality Act and what reasonable adjustment means with practical examples. Lots of people with arthritis will know that they have health issues—they have an ongoing long-term health condition—but they might not think that they are a disabled person and entitled to X, Y, and Z. It is very unclear what they are entitled to, and employers will basically have the same issue.

It goes beyond raising awareness. It is about moving from awareness to the enforcement side of things, and the duty of an employer to create a healthy work environment for all their employees and not just the fit and healthy ones. We know that culture of fear makes it really difficult for people to thrive.

I support that. It is really down to the discretion of the employer as to whether it grants the reasonable adjustment or not. In the research I talked about earlier, we found that 48% of disabled people who left work had encountered a problem trying to access a reasonable adjustment. We can raise awareness as much as we like but if that duty is not properly enforced, and if it is all on the disabled employee to push for that right, then it becomes really tricky. Government should be asking how they can work better with the EHRC to properly enforce the duty.

There are some unifying principles here. Yes, everyone’s condition is different. Even with ME, everyone’s experience of ME is different. There are some steps that can be taken with underlying principles. We did an employment support project 10 years ago when we looked at what those steps might be. From what I am hearing, they would be applicable to other conditions. There is something in bringing that guidance together and presenting it in a way that is accessible for employers, which gives them the resources they need but also promotes it as a positive move. It is bringing people with valuable insight, skills, and experience into your workforce and helping them stay there.

Can I just add to what Clare said, and to what she said earlier about the social model of disability? It is really important that employers think in terms of removing barriers and creating inclusive working environments for all their colleagues. Disabled people are 25% of the working-age population. It always feels like we are being accommodated or we are getting special treatment. We are citizens and part of the population so everything should be designed by legislators with us in mind: workplaces, work, transport, housing, social care, and so on. It often feels in these discussions that we are asking for special pleading, and I do not think that is the case. If you are an employer, you need to recognise that the workforce is made up of a diverse group of people: men, women, disabled, non-disabled, and LGBTQ and design with that in mind. I always feel that we are a bit on the back foot when thinking about how we can make things better for disabled people. If people just designed things more inclusively, including employment, it would help enormously. I am sure there is still the need for personalisation, and people have made comments around the table. We are all different as disabled people. Every other blind person is probably different to me, and similarly across the board of impairments and health conditions. You will never get away from personalisation, but we could do so much more if we started with the social model and created things that are inclusive for all citizens.

Employers require help to understand the positives. One employer we work with has described our programme as one of their talent pipelines. It is changing that mindset with employers and getting them to see this as a real positive.

I do not know if there needs to be a law, procedure, or some sort of statutory instrument but I would love to see clear guidance or requirements for when a reasonable adjustment request has to be responded to by, what the appeal is if you do not get it, and so on, a bit like the thinking going on over the right to flexible working and how it is enforced. Do we need an enforcement agency, such as the Fair Work Agency, to get a grip of this reasonable adjustment flexibility? We need to look at it as a whole and try to drive that compliance. We have also been thinking about whether the UK needs a new Accessibility Act, which builds on the Equality Act and drives inclusion through accessibility. The Equality Act is great at giving me as an individual the right to bring a case if someone discriminates against me because I have a protected characteristic, but it is quite weak on institutional change. The public sector equality duty is weak despite what some parties think about it. The anticipatory duty is weak. The two duties that are put on institutions are incredibly weak. As a disabled person, I do not have a clue whether they are being implemented or not. There is no comeback if they are not implemented. What some countries have done, and we are looking to the Accessibility Canada Act in particular, is put much greater duty on institutions to drive systemic change, which includes employers. It is not on a little old disabled person to come up and take a case, but it is actually systemic change—whether that is employers, transport, or other organisations—so each year you have plans that are co-produced and monitored so we see something a bit more systemic happening. I love the Equality Act but it is not bringing about the systemic change we need.

I would agree that the Act is not delivering the systemic change that disabled people need and want, but I am not sure that amending the Act will do that either. I completely echo what Fazilet said in the second part of her answer. It is about awareness, better interpretation of the Act and understanding what happens if you, as an employer or a service provider, do not meet it. There is very little comeback on either of those things at the moment. It is all on the disabled person to raise the issue and that is a rebalancing that should happen but I am not sure if it is a change in the Equality Act itself.

It probably could be. Obviously, it is limited by the resources it has.

Awareness and education are the key things for me rather than enforcement necessarily.

Clarification is needed on what reasonable adjustments means across different condition areas, potentially with some good practice examples.

Something Fazilet said about inclusive design stuck with me. It is fundamental to a lot of this conversation both in terms of jobs and employment. Do you have any thoughts about what that might look like from an education and curriculum perspective? When we send disabled people out into the world of work, the same as any other young person, surely the groundwork could and should be done prior to that point. I wondered if anybody wanted to comment on what you think could be done from an education and a curriculum perspective.

We have some incredibly experienced professionals at the DSA, and I can send you some information about that subject.

That would be brilliant. Thank you, Alison.

Similarly, I am very happy to send you something. We have developed toolkits for what higher education institutions and employers can do for early career people with long-term health conditions. It is information about the Equality Act and adjustments that people need. I am very happy to share that afterwards.

This issue is something that Alan Milburn’s interim report is quite strong on. For young people who are not in education, employment, or training and need to move into work, some damage is being done by other systems, whether it is the education, benefits, or employment support system. He points to quite a few systemic failings leading to disabled young people in particular not being able to get a job. Coming back to education, when we worked with some disabled apprentices a couple of years ago they said that they did not have the right careers’ conversation early enough. They thought it should be at 14. They were channelled down particular options. Some were encouraged to go to university and some were encouraged to do apprenticeships, but very few were given a full menu of options. They did not know about Access to Work. They felt it would have made a huge difference if they had known there was a support scheme that could have helped them into work. All these things help young people to think about things a lot earlier. Milburn makes the point that there may be far too much in the curriculum around academic qualifications and far too little weight given to other types of competence, whether that is more vocational-led work in schools or general life skills. Young people need to learn how to communicate, operate, and use money; those fantastic skills that are so important when you get out into the world of work. There probably is quite a mismatch between what schools are measured on, which is academic attainment, and what we want from people who are entering the workforce.

I absolutely echo that. We find that young people in school with long-term health conditions are often told what they should not do or what they cannot do. They are wrapped up in cotton wool and not given good careers advice earlier on at all. They will also be excluded from activities because of fear of doing too much physical activity, so they often do not get the right amount of physical activity. There is a real issue there. We need to move to more social model disability in education institutions as well.

I am going to come on now to the Employment Rights Act, which we have touched on already. If you want to add anything, that would be great. I will come to you first, Fazilet. To what extent do you think the flexible working provisions in the Employment Rights Act provide improved access to flexible working for people with disabling impairments and health conditions? You have already said that you think they will raise awareness, but do you think they will actually be a practical benefit to the Act?

What I really like is that it normalises flexibility. We have already touched on many disabled people not wanting to label themselves as disabled. It gives them the opportunity to use the flexible rights provisions without having a big conversation and sharing things they may not be ready to share with their employer. It is a step forward. Where I am a bit concerned is that disabled people have a stronger right under the Equality Act for reasonable adjustments, which does not have some caveats that the right to flexible working has. You only get the right to flexible working if it does not go against business outcomes. With a reasonable adjustment, you can show that you need a reasonable adjustment and that will help you deliver the business outcome. It is a slightly different test. What worries me a bit is that these two legal provisions are sisters but no one quite knows how they are going to work together. As we said earlier, the reasonable adjustment provision in the Equality Act has no enforcement guidance, no time limit, nothing. However, the Government are consulting on the enforcement mechanism and how many weeks the employer has to get back to you on a flexible working request. There is a danger that it is going to cause messiness. The positive is that the flexible working right can be used by us all, and that is definitely a big step forward.

James, do you want to add anything to that, particularly in terms of what more the Government could do?

Yes, I really like that description of them as sisters. That is really good. The right under the Equality Act to reasonable adjustments trumps flexible working, and we need to see how it plays out in practice. You can foresee employers turning down flexible working requests under the Employment Rights Act that could potentially be challenged under the Equality Act. As Fazilet said, it does feel a bit messy. For us, the Government have to make it clear how those two interact and which one is more important than the other.

It is worth noting that access to flexible, hybrid, or home working does not remove disability-related costs. It can shift them through increased energy use at home or having to adapt home environments. We would really like to see a faster, more responsive access-to-work system that can help people with those adaptations, training, and support for assessors to work with people with fluctuating conditions. Delayed support can make work unsustainable and increase the risk of relapse but the right support at the right time can be transformative.

Alison and Patricia were nodding along, Clare, just so you are aware.

On Access to Work, I was at an event with Sir Stephen Timms a few weeks ago. He said that one thing they talk about is the bottleneck: the backlog of cases and claims for Access to Work. That has caused some people who we support to drop out of work because they have not had travel claims paid and families cannot afford to sustain that cost, which is a real shame. He said they were more than doubling the number of staff involved in processing claims and that the backlog would be cleared in September but he then said 2027. I was quite excited because I thought he was going to say September this year, but I am delighted anyway that there are extra people doing the processing. I want to come back to this point and put forward a slightly different point of view on people understanding the Employment Rights Act and how it is going to affect them at work. For people with learning disabilities, helping them to navigate something like that and understand their rights at work would be very difficult. Obviously, we try to explain all that. Some people we work with do not necessarily understand that they are allowed to take holidays. We have to get into a lot of that. We provide a lot of easy-read information. We also have parents who have probably spent most of their lives fighting for the rights of their child in different arenas: education, social care, and all those things. We have cases where a family will say, “My son or daughter is working for X employer and has been there as a volunteer for four, five, or six years.” People have been working for a commercial organisation and not been paid. Parents will say, “We do not want to rock the boat.” Families are really up against it and their rights under the Employment Rights Act are probably not at the top of their list. They are just happy that their young person is active, out in the community, and doing something worthwhile. I just wanted to put that point of view across.

Patricia, do you want to just finish off?

I just have one point about Access to Work. It is an incredibly useful tool to keep people at work, but very often employers do not know about it. We have met employers. We did a survey a few years ago and a lot of employers had no awareness. We would argue that it needs to be promoted much more, including among the general public.

I have a couple of questions on occupational health services. I will come to you first, Patricia. To what extent can occupational health services help people with fluctuating health conditions remain in work? To what extent do the people you advocate for have access to effective or good and supportive occupational health services?

It really depends on the employer. It is very patchy. It is absolutely critical to people remaining in work that they get the advice soon enough and not when they are at a critical moment. Good, high-quality occupational health is very important much earlier in the journey. People should be having conversations when they begin work. What is available to them as an employee? What is the employee benefit to them? Practical support is the difference between them basically falling out of work. There needs to be some sort of incentive from Government, especially around those small and medium-sized businesses that might not be able to offer the same high level of quality support.

Occupational health is often seen as punitive. It is a stage that people get to when employers are worried about capability issues. It often focuses on whether the employee is fit for work. If there was a more strength-based approach, it would ask questions such as what barriers exist, what adjustments would enable this person to thrive, and what workplace factors improve productivity and wellbeing? As Patricia said, being able to refer early enough for that is often not a cheap or affordable thing for small and medium businesses to do.

James, Clare referred to occ health as being seen as a punitive tool rather than one of support. What do you think could be done to change that narrative and perception of occ health and the expectation that is put on them?

Employers can reject the advice, which plays into your question. I have already heard that only a tiny amount of small and medium businesses provide it, but most of us work for one of those small or medium companies so that feels like a big difference. I want to share a story from Carol, who is one of our campaigners, about her experience of occupational health that probably answers the question better than I can. She was in work and her employer refused to let her speak to the occupational health service. Instead they sent information about her from the HR Department to the occupational health team and used that to deny Carol adjustments. She then had to leave the job as paying for her own adjustment, which is what she had been doing, was costing her more than she was earning. She was not asking for anything outrageous, just a change to her shift pattern, but the answer was always no. She felt she was treated like a troublemaker. I do not think Carol’s experience is unique. Disabled people have tried to access occupational health up and down the country and probably have had similar experiences. That is what we need to shift.

I am sure that you all have experiences from the people you work with in a similar kind of vein to what James has just said but what would be a suitable level of accountability? Who should hold businesses accountable for doing that? What changes can be made to ensure that, when occupational health makes recommendations, they are actually adhered to, listened to, and treated with the seriousness they should be?

I wonder if there is a role for some enforcement bodies, which Fazilet was talking about, announced in the consultation yesterday. It makes sense to me to have an enforcement body across all the things we have been talking about today, including occupational health.

Possibly the Fair Work Agency.

Yes.

It seems to me from our own experiences that occupational health often comes in when there is quite an adversarial situation between the employee and the employer. It feels like they are there for the employer; that is my sense of it. We would almost have to conceive a different type of occupational health that talks to the person about solutions and ways forward. I do not think we can assume the interests of the employer and the employee are always the same. When we talk about occupational health, it sounds very bland and neutral, but it is often paid for by the employer. Clare made the point that it is called in when you are at the end of the road. This is the Mayfield point about creating cultures where you can talk before you get to the point of occupational health and bring in people who the disabled employee has more confidence in, who understands the social model, does not have any stigma around disability and what they can and cannot do, and is there to support them in continuing that job. I do not know if that means rethinking occupational health; it probably does.

Are you saying that trust is so bad among disabled workers that it is irredeemable for the occupational health system as it currently works?

As Clare said, occupational health is often brought in when the employer is worried about your capability to do the job. By that time, it almost feels like the employee and employer are on different sides of the fence. I am wondering whether we need to think about disabled employees who need support and confidential advice on how they could rethink their work before we get to the stage of occupational health, which is an employer service.

It is often very stressful. For the employee involved, it is often very difficult. I have to sometimes explain to a person who has Down's syndrome that they need to go to an occupational health assessment. Trying to explain to them what that will be about and why they have to do it can be very stressful, cause a lot of anxiety, and very often the report does not add any value to the situation. For employees it is sometimes a tick-box exercise as well.

I would agree. Sometimes they do not ask very much. To give another example, we had a case study of a man called Ken. He was a nurse in NHS Scotland and had an occupational health assessment. The outcome was that he just needed an adapted chair and his line manager refused. He ended up leaving his role and going to work in bank, which is agency and more expensive. He can work and gets flexibility with bank. He can work when he needs to. It is often not a huge demand.

A lot of NHS workers suffer from arthritis.

Absolutely, and there is a high attrition rate.

I have one final question and just want a short answer. What would your priority be for changing the workplace culture and experience for the people who you represent? I am going to start with James and then come to Clare.

Great question. My one priority would be Government, civil society, employers, and colleagues—both here and in the Chambers—getting behind how we can remove the awkwardness of talking about disability.

We want really clear guidance that flexible working can be a reasonable adjustment with better support for employers and managers to implement in a person-centred way.

Employers need education about the support and help that is out there. We talk about diversity, equity, inclusion, and belonging at WorkFit. That belonging word is probably the most important. We want to help employees understand they can create a culture of belonging, and they can do it very successfully. That is a better approach than threatening them with the Fair Work Agency or similar measures. We can bring employees into the fold if we do it right.

I would agree. It is a mix of a stick-and-carrot approach. There has to be more signposting to services. We find employers often do not know what is out there, and there are really good services being funded through WorkWell and so on, such as health and work coaching throughout the health system and through the DWP. We absolutely need national guidance. Charlie Mayfield came up with some really good examples of what is happening in Denmark and Sweden: early help, good advice, and a mix of incentives.

I would like Government to think about what levers they have to begin to move the UK’s workforce into being much more flexible and inclusive. I would like chief executives and managers at the top to shout about inclusion and their own disabilities when they have them, which a lot of them must have because a lot of them are quite old. We just need more people at the top shouting about disability inclusion.

Like Columbo, there is one more question.

We have talked a lot today about the employer-employee relationship. Of course, that is one area of work. This Committee has inquired into female entrepreneurship, so I want to touch very quickly on self-employment, freelancing, and setting up your own business. There are obviously many barriers in that world and I wondered if there was a quick message that any of you have to give to us as a Committee on what could be done differently to support people with disabilities in self-employment.

That is quite a difficult forum for people with learning disabilities, as you can imagine. Sometimes they are able to go into partnership, maybe with family members, and do that successfully. I cannot contribute anything useful, I am afraid.

There is a huge problem at the moment with Access to Work for disabled entrepreneurs. Proportionately, like any group that struggles to get into traditional employment, there will be more disabled self-employed people. That barrier of the Access to Work scheme not really supporting them is huge at the moment.

It absolutely depends on the type of work that someone wants to do as well, their level of education, and what their capabilities are. We have case studies of people who left work, started their own businesses, and then created a flexible work environment for others, but they have a high level of education and good work experience. It really depends on the type of work. Having access to good government advice and things like that keeps people in work. It is essential.

A subject for a whole other session.

Thank you very much for your time and expertise, and for sharing the experiences of people who you work with. We are really grateful for that. That brings this session to a close.