Charley Hullah reflects on his lived experience of employment support programmes.
I live with ankylosing spondylitis (AS), hypermobility, and neurodivergence. AS is a form of inflammatory and progressive arthritis that affects the spine and hips, but my experience is complicated further by hypermobility, which causes too much movement in other joints.
This combination affects how I move and function. Treatment helps—including immunosuppressant therapy and lots of physio—but the unpredictable nature of my disease has seen my work be affected too and last year I had to stop working when my health deteriorated. I had been working as a contractor but when the contract ended, I knew I needed time to rest and seek new support around how I could return to working in an accessible and more sustainable way.
Returning to the workplace through a four-day placement with Learning and Work Institute (L&W) recently has felt significant—and organic. On my first day, I arrived at the L&W office with my exercise mat, dosette box and the confidence to simply show up as I am. This has only been possible through all of the different things I’ve been focusing on in recent months: meditation, CBT (Cognitive Behavioural Therapy), ACT (Acceptance and Commitment Therapy), getting around to important appointments and engaging in various employment support programmes.
Many disabled people like me face a difficult balance. A lack of flexibility in the workplace can create barriers. Part-time, flexible working has given me autonomy to manage appointments and my health, which is especially important during periods of high-disease activity. But there’s a financial trade-off and fewer opportunities. So work that adjusts alongside my capacity is crucial.
High housing costs—and the housing crisis more generally—have been a major barrier. I’ve seen first hand how location can determine not only what services are available, but also the quality and consistency of support. When I’m able to get settled, I can build strong working relationships with services, including employment support programmes.
I’ve received support from multiple places: the Jobcentre, my local NHS, my local council and Access to Work—but the system feels fragmented, with each service working in isolation. The more you move, the more confusing and disconnected things become. When advisors change, programmes end and referrals meet long waiting lists—and when life changes or you have to relocate for example—it can feel very stop-start.
I found out about Access to Work accidentally through a colleague after months into a role. After what was quite a smooth initial external assessment, implementing the practical support outlined in the assessment was near impossible because neither I nor my employer had the resources or could cover the upfront costs. I was however referred by Access to Work to a mental health coach from Ingeus, which came through before the end of my contract and helped me better navigate a very hard time. But I finished the job before any other assistance was in place. I came out of this experience overwhelmed and confused but also knowing it was time for a re-think.
After meeting with many changing advisors at the Jobcentre, I was referred to a coach with lived experience of neurodivergence. He offered meaningful encouragement and referred me to the Work & Health Programme. But after some time on the waiting list and having not heard back, I followed up. I was told funding had stopped and the programme was closed. Support with the Jobcentre then ceased entirely when I was unexpectedly removed from his caseload after an assessment. I still wanted to engage and knew at this point I needed longer-term support.
After seeing an advert in my local community centre, I self-referred to my council’s Disability Job Hub. After many months of feeling like I’d fallen through the cracks, I finally made it to the top of the list. This support has been very different from previous experiences – better paced and focused on finding “good work” and opportunities that reflect both my skills and the realities of my health. I’ve enjoyed working with my coach and have had support planning ahead, applying for placements (like this one), and in building confidence. They’ve also offered financial advice, signposted me to housing advocacy, and introduced me to a local community action lab. They have an understanding of the wider realities of living and working with a disability, including the barriers disabled people often face—and that’s helped build trust and a relationship that feels genuine to me.
Here’s what I believe would make employment support work better:
There are excellent services out there and I feel fortunate to have benefitted from many. But much of the system is reactive, where it should be proactive. It can feel like support is designed for those who already have the skills, support or advocacy (or human resource, if you’re an employer) to navigate it. In my own confusion, and through trial and error, I’ve learned to ask for help and advocate for myself – a long journey that I’m still on.
There are many factors in life that affect both health and work, and when professionals have recognised this—and relationships have been built on that understanding—I’ve benefitted hugely. Having recently had the opportunity to explore this with a coach who understands this has empowered me to take positive and constructive steps forward.
My condition is lifelong. I can’t “fix” it. But I know I can live and work alongside it—with the right support, at the right pace, and in ways that protect my health prevent me from reaching crisis point. But finding the right support takes time, and is contingent on staying in one place. I just hope I can stay put long enough to see the time and effort I’ve put in pay off in better work and a healthier life.