Suffolk NHS workers speak out over everyday barriers facing disabled people
A nurse and equality adviser, say disabled people are still having to fight for basic accessibility despite existing protections.
A Suffolk nurse who says she was told to telephone a voice clinic despite being unable to speak is calling for greater awareness of the barriers disabled people continue to face.
Jenny Hartman, a learning disability nurse who has a voice disorder, says accessing services and requesting reasonable adjustments can be unnecessarily difficult, leaving disabled people repeatedly having to explain and defend their needs.
She and her friend Karn Purvis, an autistic equality adviser at Norfolk and Suffolk NHS Foundation Trust, believe organisations need to do more than introduce inclusion policies — they need to ensure those policies work in practice.
Both work for the NHS and have lived experience of disability, but are speaking independently of their employers.
Their concerns come ahead of UK Disability History Month, which begins on 19 November.
'I had no voice. How do I book this appointment?'
Speaking to us, Jenny described the difficulties she experienced when trying to arrange medical care after losing her voice.
She said she was referred to a specialist voice clinic, only to discover that booking an appointment required a telephone call.
"When I first lost my voice, I went through all the different NHS departments, and was referred to Voice Clinic. Now, to book Voice Clinic, you've got to phone up."
Unable to communicate over the phone, Jenny said she attempted to contact the service by email.
"I've got no voice. How do I book this appointment?" she recalled asking.
The response, she said, was: "Thank you for your e-mail, please phone this number."
Jenny said the experience left her questioning how people with other communication or sensory disabilities might navigate similar systems.
For her, the problem was not necessarily a lack of willingness to help, but processes which had failed to account for different people's needs.
She believes relatively simple changes, such as accessible booking methods and clearer information, could prevent disabled people encountering unnecessary obstacles when accessing healthcare.
'It's exhausting having to fight all the time'
Jenny said the cumulative effect of repeatedly asking for support can extend far beyond the immediate inconvenience.
"It's really exhausting," she told us.
She explained that disabled employees can feel vulnerable requesting workplace adjustments, particularly if they are concerned about how colleagues or managers might respond.
She also highlighted how disabilities and people's needs can change over time, meaning adjustments may need to be reviewed rather than treated as permanent, one-off arrangements.
"Being aware and being heard is so important," she said.
"It's so exhausting having to fight all the time to be seen and be heard and just to kind of live."
Karn, who was diagnosed as autistic later in life, said asking for support can be particularly difficult when people are still learning to understand their own needs.
He explained that even when an adjustment has been recommended, being repeatedly questioned about it can undermine someone's confidence.
For Karn, a willingness to listen is an essential starting point.
"If you do talk to someone and they just believe you, that's that simple first thing, you've already got a shared ground for that conversation."
When inclusion policies don't work in practice
Karn, who has worked in inclusion across the public and private sectors for around a decade, believes there can be a significant gap between organisations' equality policies and people's actual experiences.
He recalled attending a professional event about disability inclusion where the presentation slides contained so much information that some attendees struggled to read or process them.
The situation struck him as particularly frustrating because the event was intended to improve understanding of disability.
He believes established working practices can sometimes become barriers when organisations fail to consider how different people access information.
Karn also questioned the effectiveness of policies which are introduced without checking whether they are properly understood or followed.
He argued that employers should involve disabled staff in decisions about adjustments and respond when existing arrangements are not working.
"Everyone just needs to really listen to and believe those experiences as their starting point," he said.
What happens when support works?
Despite the challenges, Karn also described a positive experience of workplace inclusion.
Before starting a new role, he approached disability charity Scope for support in explaining his needs to a prospective manager.
The charity helped him prepare a personal statement outlining his strengths, how he worked best and why he might need to ask additional questions to understand certain tasks.
Karn said his manager responded positively, removing much of the anxiety he had felt about requesting support.
"Knowing that they get it, it just makes an enormous difference," he said.
"No stress, you know, it just falls away and you can just get on with doing your job, which is what you're there for."
He believes similar conversations could make a significant difference to other disabled employees, particularly those who have previously struggled to have their needs recognised.
Small changes could make a difference
Jenny also wants organisations to consider how accessible information can help disabled people prepare for unfamiliar environments.
As someone who uses different mobility aids depending on her needs, including a wheelchair, scooter and crutches, she said having reliable information before visiting somewhere can make a substantial difference.
She suggested that organisations could publish clearer details of disabled parking, entrances, steps and other potential obstacles on their websites.
Jenny also highlighted the potential benefits of visual guides and information in different formats for autistic people and those with learning disabilities.
Such measures, she argued, could help people navigate appointments and public spaces with greater confidence, without necessarily requiring major changes to buildings.
"Just think of us," she said.
Karn agreed that organisations should work directly with disabled people to identify and remove obstacles, rather than assuming existing arrangements meet everyone's needs.
Challenging attitudes ahead of Disability History Month
Jenny and Karn have also drawn on their experiences and those shared by others to write Can You Be Less Disabled?, an independently produced book using humour and fictionalised characters to explore disability and accessibility.
The project is not affiliated with or endorsed by their NHS employers.
They said the experiences behind it highlight the gap between the principle of inclusion and what disabled people may encounter in everyday life.
Karn believes people are sometimes expected to fit around established systems rather than those systems being adapted to accommodate them.
He wants organisations to question rules that create unnecessary obstacles and take people seriously when they explain what support they need.
"Don't just accept blanket policies," he told us.
"Just question whether something has to be the way it is."
For Jenny, who has spoken openly about the uncertainty surrounding her voice disorder, challenging those attitudes is also about ensuring disabled people feel heard.
She hopes greater awareness will encourage organisations to consider accessibility from the outset, rather than leaving individuals to repeatedly request changes.
Both believe the most meaningful improvements begin with listening to disabled people and acting on what they say.