The light above Annie’s desk hums faintly. Each day it catches at the corner of her vision, sharp enough to bring on another migraine. By Sunday evening, she’s at her kitchen table drafting an email to HR, asking if the bulbs can be replaced.

It’s careful work. She rewrites it several times, striking the right balance between polite, defensive, and meticulously justified. Each sentence softened: “I completely understand if this isn’t possible.” “I don’t want to cause any trouble.” Before hitting send, she scrolls through legal advice forums, rereads the Equality Act 2010, and adds a reference to “reasonable adjustments.”

No one has told Annie she can’t ask for support. But experience (hers and others’) has taught her to prepare as if she’ll need to prove her case. By Monday morning, the message reads less like a request and more like casework. It’s a negotiation written in the language of compliance.

Across the UK, thousands of disabled, chronically ill and neurodivergent employees are doing the same type of preparation: researching policy, logging correspondence, and rehearsing requests to sound agreeable. It’s the paperwork of self-protection – the unnoticed job of managing access before conflict even begins.

Annie isn’t in HR, but she’s learned to think like it. Weeks after the first email was sent, she finds herself keeping a running trail of emails between herself, her manager, HR, and a string of other internal teams – each thread a repeat performance of the same request.  She never set out to track every exchange or quote legislation, but the longer the process drags, the more it demands. What began as a simple adjustment has turned into an audit trail for accountability that isn’t hers to carry. It’s a shift that discreetly transfers the responsibility for access from institutions to individuals.

 How Inclusion Turns Administrative

Annie’s preparation reflects a pattern that’s become routine for many disabled, neurodivergent, and chronically ill employees. Workplaces promise support, but the process of getting it still depends on how well individuals can navigate systems that weren’t built for them.

Nearly 1 in 4 of working-age adults in the UK are disabled under the Equality Act, yet adjustment systems remain inconsistent, opaque, and slow to deliver. Employees are expected to stay patient and precise – phrasing requests carefully, following up without sounding difficult, and keeping faith in processes that rarely keep pace.

The result is administrative overwork disguised as inclusion. Over time, employees learn to document everything – every follow-up, every email, every promise – because silence often needs evidence.

That instinct has become part of a national pattern. In 2024-25, Acas recorded a 41% rise in disability-discrimination cases referred for early conciliation by the employment tribunal (from 8,496 to 11,958). It reflects a wider breakdown in how organisations handle accessibility, where procedural delays evolve into legal disputes and individual exhaustion becomes a measurable trend across the workforce. The escalation tells us something more fundamental about leadership and accountability. If workplaces were truly equipped to prevent these failures, employees would not need to turn evidence-gathering into self-defence.

This is where intent and impact begin to diverge. The CIPD’s Neuroinclusion at Work 2024 report found that while around 60% of senior managers said neuroinclusion was a focus, just one-third had embedded it in their EDI strategy. The distance between what’s pledged and what’s practised leaves employees maintaining accessibility on behalf of their organisations. What should be an institutional duty turns into unpaid maintenance work.

The Architecture of Delay

Every adjustment request starts simply: a form submitted, a confirmation sent. But few end where they should.

A 2023 Business Disability Forum survey found that 78% of disabled employees had to initiate the process themselves, and only one in ten described it as straightforward. Over half never received all the adjustments promised, and most waited longer than four months.

Those months rarely sit idle. One civil service worker waited five months for assistive software, borrowing equipment and using her personal laptop to keep up. Productivity was preserved, but at her expense.

Each delay becomes another transfer of labour. Employees spend hours chasing updates, copying managers, and documenting silence just to keep their requests alive. Those hours don’t appear in HR metrics, yet they keep organisations running. On paper, compliance looks intact. In practice, the system’s efficiency relies on the very people it fails to support.

The Economics of Neglect

Delays in workplace support aren’t just a failure of process, but they also reflect a lack of confidence. Many employers still question whether disabled staff can do the job, and that doubt quietly shapes everything from recruitment to retention, believing that delays contain risk, and protect performance metrics that favour stability over reform.

Scope’s 2024 research on employment retention found that 54% of employers admitted to having concerns about a disabled employee’s ability to perform their role, concerns that directly influenced hiring decisions. That perception has consequences long after recruitment. Disabled people are nearly twice as likely to leave work as non-disabled peers, with 9% falling out of employment each year compared with 5% of non-disabled workers. Almost half of those who left cited problems securing reasonable adjustments as a key factor.

When confidence in capability is low, delay becomes a strategy. Employers hesitate to invest in adjustments they’re unsure will “pay off,” treating accessibility as a discretionary cost rather than a condition of fair employment. According to a Survation poll commissioned by executive search firm Inclusive Boards, one in ten business leaders were very apprehensive about appointing a disabled person to a senior role, most citing the perceived cost of making adjustments as the reason. That anxiety filters down through management structures, turning caution into culture. Inflexible work patterns, slow responses, and inconsistent sick-pay processes transform manageable conditions into exit points.

One wellbeing practitioner working in a suicide-prevention service saw this hesitation up close. After disclosing her neurodivergence and requesting small adjustments, support initially seemed forthcoming. But as workloads grew, compassion receded. Her requests stalled in email threads, and months passed before any changes were made. When she raised concerns, she was called into “a chat” and handed a disciplinary warning about her email tone. “Being neurodivergent, I’m often told I come across as blunt,” she said. The grievance she filed was upheld, but nothing changed. She left within months, replaced at higher cost than her requested adjustments would have ever been.

Each of these departures is avoidable. Most adjustments cost less than a few hundred pounds, yet the loss of skilled staff carries financial and operational costs that ripple through teams. What’s framed as prudence often hides inefficiency: organisations save in the short term but spend more replacing the talent they failed to retain.

When Work Consumes Wellbeing

Every delay extracts something – time, energy, focus are all redirected from the job itself to the labour of keeping access requests alive. What should be routine administration becomes maintenance work done on borrowed stamina.

That maintenance has a cost. The longer employees spend managing their own access, the more their health declines. Over eight in ten disabled workers say they wait between four months and over a year for workplace adjustments to be put in place, and 55% say their requests are only partially met or ignored. While the process drags, people keep working through the barriers they’ve tried to remove: migraines beneath harsh lights, pain at unadapted desks, exhaustion that stretches across months. The paperwork doesn’t just slow progress, it compounds fatigue. Waiting becomes part of the workload.

The toll is visible in the data. NHS England’s Workforce Disability Equality Standard found that one in five disabled employees felt pressure from their manager to work while unwell, more than twice the rate of their non-disabled colleagues. Presenteeism has long been a survival strategy: staying employable means working through pain, not around it.

Now, the wider workforce is beginning to follow the same pattern. The CIPD reports that UK employees were off sick for an average of 9.4 days last year, the highest in over a decade, while 35% of organisations saw a rise in employees working while sick. Chronic illness and fatigue are no longer rare exceptions but growing norms in workplaces still built for uninterrupted performance.

In effect, the same system that once left disabled employees chasing their own adjustments has expanded to cover everyone. Workplaces are still built around outdated ideas of health and productivity, leaving people to self-adjust and to absorb the cost of staying well enough to work. What began as an accessibility issue has become a workforce-wide crisis of wellbeing.

Rebuilding Access

The exhaustion many workers describe sits within a design flaw. Most UK workplaces still rely on self-disclosure and manual requests, forcing employees to manage accessibility themselves. But some organisations are starting to build systems that work differently.

The Civil Service’s Workplace Adjustment Passport – now adopted by several NHS trusts and local authorities – allows adjustments to follow employees between roles and managers, reducing the need to restart requests from scratch. Continuity, not repeated negotiation, protects both wellbeing and productivity. 

Training, too, has to move beyond awareness. The University of Leeds’ Accessible Governance pilot integrates data to inform decision-making, ensuring greater accountability for EDI outcomes in its governance, and reviewing processes such as recruitment and academic promotions to improve fairness and create a more inclusive culture. Embedding inclusion into management practice, not treating it as a side project, turns intention into infrastructure.

Still, until reform catches up, employees will continue doing the invisible work of advocacy: documenting, following up, and interpreting policy just to stay heard. That’s why practical guidance remains essential. SupportHub Tools’ Reasonable Adjustments Guide was created for this reality, helping people frame requests, understand rights, and navigate systems that still depend on self-advocacy.

The goal isn’t to erase advocacy but to rebalance it, to make inclusion procedural. Because access shouldn’t depend on endurance. And workplaces that act on that principle first won’t just retain their staff, they’ll rebuild the trust their policies promised.