Recently, I spoke with a senior member of our local NHS Integrated Care Board (ICB) about accessibility in a new building planned for our area. They outlined the physical access provisions and highlighted efforts to make the building autism-friendly. When I asked specifically about sensory accessibility, I was told they had consulted with user groups and installed loop systems for people with hearing loss. 

That’s when the alarm bells started to ring. 

Are We Still Talking About Loop Systems in 2025?
 
My hearing aids, like those of many modern users, don’t support loop systems. There’s simply no room for that technology anymore after having my hearing-aids adjusted for working in the NHS. Instead, I use Bluetooth-enabled hearing aids, as does my son, who has cochlear implants.
 
Loop systems still help some users, but they are older technology, and we’re moving fast into the 21st century. I raised this politely, and was invited to volunteer my time to help them improve their understanding.

More alarm bells.

The Double Standard: Work More, Volunteer More

 It’s May 2025, and proposed government reforms to the Personal Independence Payment (PIP) system are hitting hard. The stated goal? “Getting more people back to work.” But as someone who already works, I find myself feeling increasingly stuck between a rock and a hard place.

Every time I apply for Access to Work (ATW), I face the same uphill battle. The system is broken. And now, in the same breath, we're being told we must also volunteer to improve the services we're struggling to use?

Expertise Isn't Free, Nor Should It Be Expected

 I declined the ICB’s invitation to volunteer. I already contribute as an “Expert by Experience” where I can, currently in social care, but that work is also frustratingly slow and under-resourced. I explained why assuming people can freely give their time is flawed. Who typically has the capacity to volunteer - it is often those who are retired or on benefits. They nodded, admitting they often hear “the same voices.”
 
I wondered: Why is that acceptable?

Some NHS Trusts actually pay people for their lived experience and engagement, and I previously saw a great example of this in Leeds and York Partnership NHS Trust. This isn’t about a lack of funding—it’s a budgeting priority issue. If some Trusts can do it, all Trusts can. The NHS has frameworks for inclusive and equitable engagement, but implementation is inconsistent.

Who Are You Not Hearing?

 When engagement depends on volunteers, we risk missing the voices of the most vulnerable. I remember one of my early projects in the Deaf community. Many participants had grown up without access to sign language and did not know what they were missing. They were on the edge of the community, people who would never volunteer themselves for research.
 
That project only happened because a Deaf NHS Commissioner championed it. Without proactive outreach, they would have remained unheard.
 
So here’s my question for anyone involved in public services:
 

 
It’s easy to engage with the loudest, most visible advocates. But to create truly inclusive services, you have to go further. You have to invest in listening to those who will not, or cannot, speak up unless invited.

Start at the Edge

 If you begin by listening to the edge of your community, you’ll define the true scope of need. But this requires time, money, and commitment. As a PhD student, I don’t have the resources to reach isolated or hidden communities, like veterans with brain injuries who may be non-verbal, or those who are isolating themselves considerably.

The NHS can reach these people. But only if engagement is valued, funded, and not relegated to those willing to do it for free.
 
Because everyone deserves the chance to be heard.

 Links correct as of 03/05/2025

#coproduction #phd #disability #deaf #engagement