Overview
Analysis was carried out with 70 transcripts, based on the lived experiences of 85 participants and 4 stakeholder interviews. Four interconnected key themes, each with supporting sub-themes, were identified from the analysis. Each theme is explored below with the use of anonymised participant quotes to illustrate findings.
We still very much live in a very medicalised model and my experience is that we just treat the symptoms and not the person… There needs to be another stream. There needs to be this kind of, like, really understanding how chronic pain and chronic illness impacts a person mentally, psychologically, spiritually. You know, there’s a real loss of kind of like, I think about it a lot, but there’s a real, like, you lose like the soul I feel completely sometimes, you know, empty. It’s gone. And it’s like, so how do we rebuild someone? Or support them or. In those moments, and it’s not enough to just offer meds, and I think there’s a place there. The work starts there. Because there’s nothing that there isn’t anything.
Theme 1: Barriers to work
Participants spoke about a range of things that make it difficult to work. These included personal challenges like physical and mental health issues, addiction, and caring responsibilities. Others pointed to wider problems, such as poor public transport or workplaces that do not accommodate individual needs. Barriers to work aren’t just about individual circumstances – they’re often made worse by bigger, systemic issues.
The participants shared many reasons why it’s hard to get, or keep, a job when living with health conditions or disability. These include:
Physical health and disability
Many participants face challenges in finding or keeping work due to physical health issues, injuries, or disabilities.
Challenges include:
- Limits on what tasks can be done due to health conditions, for example, standing for long periods, lifting or moving around
- Chronic pain, fatigue and invisible symptoms
- Fewer appropriate opportunities and greater risk of exclusion due to inflexible ways of working
They see the wheelchair, they see the dog, they see all of that and they see problems. But if they let me in, to then go ‘oh, well that’s a really easy fix because I can do this and I can do that and I’m quite resourceful’. But it’s that they always see problems, and the mobility and the issues, before they see, like, actually, she might be really good at this job or, she’s got all these brilliant skills.
I have fibromyalgia, which is a stress illness, so it physically and mentally plays in my body, I’m literally fighting my body every day, every minute of every day. I’m fighting my body, my mind and physical.
I can’t perform most tasks. So, am I disabled? To me I am, but to others they don’t, it’s not visible.
Mental health and addiction
People experiencing mental health challenges or addiction often face barriers that affect their ability to work or look for a job, including:
- Struggles with concentration, motivation and stress management
- Medication or therapy appointments clashing with standard working hours
- Negative attitudes about mental health and addiction
The problem with the seizures are that I forget what’s happened. If I have quite a few, I can miss the whole day – which is a bit of a problem when you work. You probably have to remember things
Caring responsibilities
People with caring responsibilities often face unique challenges which affect their ability to work or return to employment.
Common experiences for carers include:
- Lack of flexibility, training opportunities and support at work
- Financial difficulties due to reduced working hours or limited work options available
- Emotional strain due to balancing employment and caring responsibilities
They just presume you’re a carer and you don’t want to work because you’re a carer. So, they don’t offer you any [training] because I’m on Universal Credit – because I’m a carer. That sort of closes off all the training. Nobody offers you training because they think well, ‘she’s a carer why do we need to offer her training?’
Transport challenges
Transport is a major barrier to finding work and keeping a job. This was especially the case for people living in rural areas with health conditions and/or disabilities.
Barriers include:
- Infrequent or poorly timed public transport services that don’t align with work hours
- Long, exhausting commutes
- High costs for alternative or private transport (e.g. taxis) make it difficult to sustain employment
Challenges with transport limiting access to suitable jobs, which can lead to wider issues such as social isolation, reduced independence, reduced confidence and self-esteem.
There’s a big problem with public transport. It might take you into town, but if you have a job on the outskirts of the next town… I would find it impossible, like where I used to work, physically getting there using public transport. I can’t spend two or three hours commuting to somewhere that might have only took me 25 minutes in the car, now I don’t drive. That’s like 2 hours on top of the working day. I would really struggle to manage anything more than extremely part time, and I don’t think employers give enough credit to people that have to rely on inadequate public transport.
Concerns about benefits
Many people face challenges with the benefits system, which makes it difficult to even explore employment, let alone return to work.
Common experiences shared include:
- Fear of losing financial support
- Inflexible and complex benefit systems which don’t suit people living with fluctuating health conditions, or people who might be on trial periods for new roles
- The hidden stress of navigating benefits, the fear of financial instability, and the lack of clear support available
- Underlying feeling of stigma which negatively impacts motivation, confidence and self-esteem – further reinforcing the cycle of unemployment and sense of exclusion.
Universal Credit is horrendous. The Job Centre is very unsupportive and they’re just judgy. They’re horrible. Every penny that I earned for one month’s work – they took away out of my Universal Credit anyway, so I was no better off, and in a lot of pain, and a lot of sleepless nights of anxiety
I want to work and don’t like being negatively stereotyped ‘on benefits, don’t work’ by others. Work needs to offer people with limiting disabilities suitable jobs that can be adapted to reduce/remove their barriers
Concerns about the future
Many people feel uncertain about their ability to work in the future due to health-related challenges, which can often lead to unpredictable circumstances.
These include:
- Fluctuating health conditions, which make it difficult to plan work or commit to fixed routines
- Fear of discrimination, based on age or health status
- Limited training and career development opportunities are being offered by employers due to health conditions.
I think my age has become a barrier. It shouldn’t do but so many people still discriminate against your age. If they find out how old you are, they just think ‘well, we are only gonna get three years out of her, then she’ll retire, so what’s the point in taking her on? Well, you know, I could work for three years, and I might carry on. I might not want to retire. I’m very active, you know, I Morris dance. I’m not a sit at home person, you know, I’m really active and I want to work. So, the barrier there is my age.
My main fear is OK; I’ve got to go to work tomorrow morning. But what if I don’t sleep tonight? … I just don’t see how that computes when someone’s paying you to perform a role, and you can’t do it.
Confidence issues
Participants commonly described issues with low confidence in returning to work, especially after long periods of time away due to health, addiction, or other challenges.
Findings include:
- Loss of confidence due to negative experiences in the past
- Challenges with mental health impacting confidence
- Difficulties with stereotypical recruitment processes and interview anxiety
- Unsupportive employers, colleagues or work environments
Practising confidence with interviews. Yes, that’s what I’m working on right now.
I’m rubbish at interviews. I’d need coaching with interviews. I literally talk myself out of jobs.
Theme 2: Need for supportive workplaces
A supportive workplace is one where kindness, flexibility, and attentive leadership foster a positive and inclusive environment. When managers are approachable and listen, and when teams work well together, employees feel more confident, valued, and happy.
In contrast, poor management and lack of support can significantly harm morale and productivity. True support goes beyond friendliness. It involves recognising individual needs, making reasonable adjustments, and creating a safe space where employees can disclose health conditions without fear of stigma or discrimination. This includes offering flexible hours, remote work options, and a culture of open, respectful communication. Having a supportive workplace makes a huge difference for people living with health conditions or disabilities. Participants shared the following points around the need for supportive workplaces:
Good relationships and teamwork
Positive relationships at work play a vital role in helping people to feel supported, confident, and able to manage challenges. Participants recognised the value in:
- Supportive colleagues and managers, including peer support
- Teamwork and shared goals
- Feeling respected and valued, rather than judged and overlooked due to a person’s health condition.
The management understand that not everyone fits in a very tight box. As much as you have things to offer the job, there are also things to hold you back. The management should have the ability to see past and look outside the box and find alternative ways of using those skills.
Respect and being valued
- Participants described the importance of feeling valued in their work. It was suggested that people want to be:
- Recognised for their unique skills and contributions
- Treated as an individual, not just an employee number or someone with a health problem needing to be managed
- A part of a supportive environment and inclusive culture
I think recognising your skills as an employee and appreciating them, I guess, and being able to use them. So, where previously you’ve been unemployed, your skills go unrecognised and unused perhaps. And respect being treated respectfully. So, at the same time as having the support for your needs in terms of your health – not feeling patronised or maybe second class. So being treated with respect at the same time.
So much of this affects people’s self-esteem. It’s about supporting the person to feel there’s something they can do and feel satisfaction in. There’s so much people can’t do, and it may not be consistent, so why not look at the things people can do when they can do it? Person-centred rather than condition-centred.
Flexible workplaces
Participants said that flexibility at work is essential for managing health conditions, caring responsibilities and recovery. Supportive and adaptable workplaces help to reduce stress so people can stay in work. Suggestions for achieving this include:
- Flexibility with working hours, time off for appointments, and options to work remotely, if required.
- Being trusted to manage one’s workload and use personal judgment
- Empathy from organisations and understanding the importance of flexible working policies
I don’t know from one day to next, and sometimes, one hour to the next, how I’m gonna be. It’s because my disabilities are so changeable depending on what season the weather’s in. I can get up, feel fine in the morning, which is very rare, but by an hour or two later, having got washed, dressed – be absolutely exhausted the rest of the day. I don’t sleep very well at night, so that’s when I do most of my emails and project reporting and stuff like that.
I would say having a supportive manager, being able to work well within the team, using my skills to complete the role successfully. Having a good minimum wage. And just a friendly environment.
Supportive management
Participants said supportive management can be helpful to reduce barriers to finding or staying in work. Flexibility was commonly described as a way to support people who are living with health conditions, have caring responsibilities or are dealing with recovery.
Participants mentioned:
- Leaving roles after changes in management led to reduced flexibility or understanding
- Feeling unable to disclose health conditions due to fear of stigma
- Feeling judged, monitored or bullied when disclosing neurodivergence or mental health conditions
Manager needs to be understanding of the individual and the health issues they might be struggling with. Working equipment might need to be adjusted. For example, a proper chair, not a pile of phone directories to sit on, which has happened to me. Having a quiet area to take a break in – not a stationary cupboard! Somewhere where my skills can be valued.
The boss, well, he’s called the Director, he was really good in supporting me with learning. Obviously, all equipment’s different these days, all of it’s on the computer. And so, he brought me a special mouse to operate the computer that had all the visuals on, and I think that’s the only thing I needed.
Theme 3: Need for appropriate training and skills development
Several participants said they didn’t get much help or training, either in the past or now. When support was available, it could sometimes be helpful, but often, it wasn’t the right kind of help or didn’t fit their needs. The lack of tailored training means that people may not have the up-to-date skills needed for modern workplaces, especially as technology changes rapidly. This can make it harder to re-enter the workforce after a period of unemployment due to illness. This could lead to a cycle of feeling ‘left behind’, which negatively impacts confidence and self-esteem.
Training and learning new skills were described as important for finding, getting and keeping a job – especially for people with health conditions or disabilities.
Participants shared experiences about:
- A lack of suitable and accessible training opportunities.
- Barriers to training, including health issues, addiction, or being on long-term sick leave, make it difficult to take part in training.
- A lack of accessible and personalised support
- The value of learning on the job, paired with formal training, which was often hard to find
- How training helps you feel more confident and ready to return to work
I’m trying to have a look around and figure things out, but also, I feel now I’m that bit older that I don’t really know. How I might go about getting back into the job market cause before you know I’ve been young, skilled, qualified, capable, you know, and you sell yourself. And now I can’t see how to sell myself. I guess that I would be sellable. If we could have access to those sorts of people, situations who could help us to work out what is relevant now and how what we did know what parts of that are still really applicable and still really want it, and still that we can do, but we need some different support for it, that’s. You know, there just seems to be a lack of the inbetweeny bit…
I think it’s quite important that people do take on people with additional needs and I think a lot of people, they really struggle to get jobs because most employers will look for people that have all the skills and may not consider someone who might need a little bit of training.
Theme 4: Motivation and confidence to work
People’s motivation and confidence to return to work can vary widely, depending on their health, caring responsibilities, personal circumstances, and past experiences. These factors also influence the types of jobs they can realistically consider.
Hope for the future
Although health and personal challenges can knock confidence, many people remain hopeful and motivated to return to work. Rebuilding confidence, especially after trauma or long periods out of work, can take time, but support from family, friends, and community organisations plays a vital role in this journey. This sense of hope can be a powerful motivator which encourages people to keep trying, explore training opportunities, voluntary roles, and ultimately – take small steps towards employment.
I would love to go into working with children in Hospice care, kind of supporting their learning and development or what did I apply for? I applied for a really interesting job supporting young carers in school and how to support them in getting a healthy routine and trying to get working and you know, get their homework balanced with caring and all things like that. You know, using my lived experience to support children and young people in that position and try and help them find a balance in their life and support them.
Determination to work
Some people are very determined and just need to find the right job. For them, it’s not about confidence but about finding something that fits. This determination can help people overcome barriers and keep trying, even after setbacks or long periods out of work.
I would like to return to work. I’ve got a goal by next year to get a full-time job to get off benefits completely. That’s been my goal for the last two years. I feel very particular about the job I want to do like I don’t want to do just any job to get money.
It could have been better if I’d had a Job Coach with an understanding of my needs (physically, mentally) who could have helped me to find an appropriate job suited to me.
Rebuilding confidence
Others feel less confident because of their health, caring responsibilities, addiction, or being out of work for a period of time. They may need time and support, which is person-centred, to rebuild their confidence and develop skills. Health problems can also make people worry about whether they will be able to cope with the demands of work or whether they will be able to sustain employment long term.
Technology, it’s a huge barrier for me. I was brought up in an area where we didn’t have it, you know? So, you were talking about gaps in knowledge. Not only does it make me very stressed and physically ill, having to deal with modern technology, but I don’t know where I fit in with it really. It seems an anathema to the younger generation that you might not know how to do a spreadsheet or transfer your photos onto something. Any of those kind of things that are taken for granted.
I maybe don’t have the skills to advocate myself for myself. You know, when you know the deck, you know it isn’t stacked in my favour, so to speak.
Support makes a difference
Support from community organisations, peer groups, friends, and understanding employers was widely recognised as a key factor in boosting confidence and motivation.
Some participants described support that included the following aspects as ‘amazing’:
- Practical help – with health management or job-seeking
- Encouragement – emotional reassurance and motivation
- Advice – navigating personal and professional challenges
Local groups and services were particularly valued for offering:
- A sense of belonging and connection
- Strength and direction during recovery
- Help in identifying suitable work environments
Many participants also expressed a strong desire to give back, using their own experiences and skills to support others in similar situations.
I believe in not giving all negative feedback to you, actually balancing it out. So, you’ve got the positive as well as the negative – you can cope with that. But when you’re just getting negative feedback, that’s really difficult to cope with.
I want to be able to use my skills and knowledge of those to be able to make the world more accessible for people.