So, 1,252 people have now put their name to this cause.

That number still stops me in my tracks.

When I last wrote, we were at 869. To see nearly 400 more people arrive since then — people who recognised themselves in this issue, or who simply believe patients deserve better – is genuinely humbling. What started as a personal fight has now become something far bigger and far more credible. This is no longer “just” a petition. It’s evidence of a real, unmet need.

What’s New: Direct Engagement with NIHR

The biggest development since my last update is this:

I am now in direct correspondence with the National Institute for Health and Care Research (NIHR) — the body responsible for funding and shaping applied health research in England.

This is a significant step forward.

NIHR does not engage casually. Their role is to determine what gets researched, how interventions are developed, and ultimately what evidence is strong enough to influence NHS practice. For the first time, TMJD is being discussed not just as a clinical frustration, but as a research priority gap.

I’ve shared with NIHR a detailed proposal outlining:

• the scale of unmet need

• the lack of a coherent, integrated care pathway

• the absence of robust evaluation of multidisciplinary TMJD models

• and the long-term human and financial cost of leaving patients unsupported

Their response has been clear, constructive, and – importantly – realistic.

What NIHR Have Advised

Rather than rushing straight into a large clinical trial (which would almost certainly fail without groundwork), NIHR have advised a proper, staged approach, aligned with how meaningful change actually happens in the NHS.

In short, this is the pathway forward:

1. Establish National Research Priority

NIHR need clear evidence that TMJD represents: • a significant burden to patients

• a cost to the NHS

• and a genuine evidence gap

One of the strongest ways to do this is through a James Lind Alliance Priority Setting Partnership, which formally brings together patients, clinicians, and researchers to identify the most urgent unanswered questions. Crucially, no such partnership currently exists for TMJD.

This alone says a lot.

2. Map the Current Reality

Before anything can be “fixed,” we need evidence of how TMJD care is actually delivered today – not how it’s meant to work on paper.

This means: • surveying clinicians across dentistry, ENT, MSK and pain services

• mapping referral routes and dead ends

• identifying where patients fall through the cracks

In other words: turning lived experience into documented, undeniable evidence.

3. Develop an Evidence-Based Intervention

NIHR have confirmed that the kinds of approaches many of us already recognise — biomechanical/postural components, digital symptom tracking, and integrated care — can sit within their remit, if developed properly.

That development process includes: • systematic review of existing evidence

• qualitative work with patients and clinicians

• co-design of interventions

• and clear theoretical justification

This work is fundable through NIHR’s Research for Patient Benefit (RfPB) programme.

4. Only Then: Evaluation and Implementation

Once an intervention and care pathway are properly developed, then — and only then — does large-scale evaluation and NHS rollout become realistic.

This is slower than any of us would like. But it’s also the difference between real change and yet another well-intentioned document that gathers dust.

Why This Matters

I want to be very clear about something.

This is not about academic box-ticking. This is not about prestige. And it is not about waiting years for help while patients continue to suffer.

This is about building something solid enough that: • it cannot be dismissed

• it cannot be quietly ignored

• and it cannot be reduced to “self-management leaflets”

NIHR engagement means TMJD is now being discussed in the language the NHS understands: evidence, systems, outcomes, and accountability.

That matters more than any headline.

Where You Come In

This petition still matters – perhaps more now than ever.

When NIHR, policymakers, or future collaborators ask “why should we prioritise this?” — 1,252 names is an answer.

So please:

keep sharing

keep talking about it

keep adding voices

And if you’re a clinician, researcher, or policymaker reading this: you’re welcome here. This isn’t about blame... it’s about building something better.

Final Thoughts

I know many of you are tired. I am too.

But for the first time since this began, there is a clear path forward — one that could genuinely change how TMJD is understood and treated in the UK.

This campaign started as a cry for help.

It’s becoming a blueprint.

Thank you again — truly — for walking this road with me.