Response from Health and Social Care Committee

Dear Friends,

Since my last update, I’ve continued trying to take this campaign beyond the petition itself and get some straight answers from the organisations responsible for shaping healthcare policy.

There have been a few developments, some clarification, and a few responses that have left me with more questions than answers. So, I thought it was time to bring you up to speed on what’s been happening behind the scenes.

Fair warning: this is a fairly lengthy update, but I think it’s important to explain what I’ve been doing, what I’ve been told, and why I still believe there are some serious questions about how patients with TMJD are being let down.

So, grab a cuppa. We have quite a bit to get through.

First, I contacted the Health and Social Care Committee with a proposal calling for reform in the diagnosis and treatment of temporomandibular joint disorders (TMJD) within the NHS. I also raised serious concerns about the  consequences of orthodontic treatment going wrong, and the damage it can cause to a person's bite, jaw function and long-term quality of life.

After a considerable wait, I eventually received confirmation that my submission had been logged and added to the Committee’s list of suggested inquiry topics for members to consider. I also received an apology for the lack of communication, which I appreciate.

To be clear, this does not mean the Committee has agreed to investigate the issue. There is no guarantee that it will. But at least the proposal has reached the appropriate parliamentary channel and has not simply disappeared.

I have also pursued clarification from NICE following its decision not to prioritise a topic suggestion concerning the assessment of temporomandibular disorders.

And this is where things get rather frustrating.

NICE explained that its primary focus is developing evidence-based recommendations, and that it prioritises topics where there is sufficient good-quality evidence to support definitive recommendations.

In its response, it stated:

“In this instance, there did not appear to be evidence that would allow for the development of recommendations that would go beyond the existing published guidance.”

Now, I understand the principle behind that decision. NICE cannot simply recommend treatments without adequate evidence, and I am not asking it to abandon scientific standards or endorse something just because patients are desperate for answers.

But let's be honest about what this means for the patients who are still struggling.

What happens when the existing guidance doesn't work?

What happens when someone follows the recommended conservative treatment, seeks help, attends appointments and does everything they have been advised to do, yet their symptoms persist?

What happens when they are referred elsewhere, only to find that specialist services are difficult to access, pathways vary between areas, and nobody seems able to offer a clear answer about what comes next?

The response I received acknowledged that the existing guidance itself recognises that, where available treatments are unsuccessful, “there is likely to be little further that can be offered.”

Read that again.

For patients whose symptoms improve, the existing pathway may be sufficient. But for those who remain significantly affected, the situation can look very different.

I am not suggesting that doctors/surgeons have an unlimited range of treatments available, or that every patient can be cured. I am asking whether it is acceptable for people to reach the apparent end of a treatment pathway without a satisfactory explanation, a meaningful plan or a clear way forward.

There is a difference between acknowledging that the evidence for further treatments is limited and accepting that nothing more can be done to improve assessment, referral, coordination of care or the support available to patients.

That distinction definitely matters.

My concern is that the uncertainty surrounding persistent TMJD is being treated primarily as a reason why further guidance cannot be developed, rather than as a problem that deserves greater attention in its own right.

And if NICE believes it cannot address that problem through new guidance, then we need to ask which organisation can.

That is precisely why I approached the Health and Social Care Committee in the first place. I want these issues examined beyond the level of individual appointments and isolated patient experiences. I want serious consideration given to the wider pathway, the availability of specialist care and the experiences of people who have not found an answer through existing treatment.

I will be responding to NICE's explanation and continuing to pursue the appropriate channels. I cannot promise that this will lead to a parliamentary inquiry, a change in NHS policy or anything else. I would rather be honest about that than give anyone false hope.

But at least I am trying to move the discussion beyond simply talking about the problem.

And that brings me back to this petition.

Are we really supposed to believe there are only 1,665 of us?

I remain unconvinced that the figure of 1,665 supporters represents anything remotely close to the number of people affected by TMJD and the wider problems associated with it.

To be absolutely clear, I am talking about the petition's current reach, not claiming that 1,665 is an official estimate of how many people have the condition.

There are people across the UK and around the world dealing with jaw dysfunction, chronic facial pain, muscular symptoms, difficulties chewing, restricted movement and the wider consequences these problems can have on their daily lives. Some have been struggling for years. Some have had difficult experiences following dental or orthodontic treatment. Others may never have received a clear diagnosis or realised that their symptoms could be connected.

Not everyone's circumstances are the same, and I am not suggesting that every case has the same cause or requires the same treatment.

But I find it difficult to believe that the number of people who could relate to the issues raised by this petition is anywhere near as small as its current level of support might suggest.

A petition cannot represent people who never sign it, and an issue that remains invisible is much easier to overlook.

I know I have said this before, but it bears repeating: we cannot expect decision-makers to appreciate the scale of a problem if we struggle to demonstrate the level of concern that exists around it.

And now, the uncomfortable part...

I want to return to something I raised in my previous updates, because I still think it is one of the biggest obstacles standing in the way of meaningful progress.

Please stop waiting for a saviour.

I know that might sound harsh, but I want to reiterate a few things.

I genuinely dislike the tendency to look for a single person who will somehow come along, take charge and fix everything on everyone else's behalf. This apparent desire for a saviour seems to crop up in all sorts of areas of human life, and campaigning is no exception.

We wait for a leader. We wait for an organisation. We wait for a politician. We wait for a doctor who finally understands. We wait for somebody with the right connections, the right qualifications or the right platform to step in and sort everything out.

Meanwhile, everyone else watches from the sidelines.

I'm sorry, but that is not how meaningful change happens.

I am one person. I am not an organisation, a professional campaigning group or a substitute for collective effort.

I started this petition because I believe patients deserve better, and because I wanted to do something constructive about an issue that has affected my own life. I have tried to keep the conversation going, investigate possible avenues for reform and put concerns in front of people and organisations who may be able to do something about them.

But I cannot manufacture a movement on my own.

And I shouldn't have to.  

So, to reiterate what I said in my previous update: please don't rely on me, or on any other individual, to do all the work for you.

If you genuinely believe this issue matters, then... And I mean this in the nicest way possible... get off your backsides and contribute something yourselves.

That doesn't mean everyone needs to become a full-time campaigner. It doesn't mean you need specialist knowledge, endless free time or the ability to write lengthy letters to parliamentary committees. There are plenty of ways to contribute, depending on your circumstances and what you are comfortable doing.

You could share the petition, raise awareness in relevant patient communities, contact your MP, write to appropriate organisations, help gather information about patients' experiences or connect with others who are working on similar concerns. Online groups and forums like Orthodontic malpractice/TMJD support on Facebook are good places to start. 

If you have relevant professional expertise, research skills or experience of navigating the healthcare system, perhaps you could offer something particularly useful... in that case, I would genuinely like to hear from you.

And if you have a different idea, even better.

The point is not that everyone must do the same thing. It's that if we want this to become more than a collection of people agreeing that something is wrong, we need people willing to help work out what comes next.

I don't have all the answers. I've never claimed to.

But I am prepared to keep asking questions, challenging assumptions and exploring possible routes forward. I would welcome others who are prepared to do the same.

If I disappeared tomorrow, what would happen? Would the conversation continue? Would other people pick up the work? Would anyone keep asking the difficult questions, contacting the relevant organisations, sharing information and trying to bring patients together?

Or would everything simply grind to a halt because the person everyone had been waiting for was no longer there?

That is something worth thinking about.

I have seen enough of how these things work to know that agreement is easy when all it requires is clicking a button. The harder part is deciding what you are prepared to contribute after that.

And no, I am not asking everyone to dedicate their lives to this cause. Like I said before... I KNOW people have families, jobs, disabilities, financial pressures and their own battles to fight. I understand that. I am not interested in shaming people who genuinely cannot do more.

But there is a difference between being unable to contribute and assuming that somebody else will always do the work.

So... What happens next?

I will continue pursuing the appropriate channels, raising questions about the existing guidance and trying to establish what can realistically be done for patients whose symptoms persist despite the recommended treatment pathway.

I will also continue sharing updates when there is something meaningful to report.

But I want to be clear about one thing: I cannot promise a particular outcome, and I will not pretend that sending letters to committees or challenging organisations automatically translates into change. It doesn't.

The response from NICE has demonstrated that there are limits to what it believes new guidance could currently achieve. The Health and Social Care Committee has confirmed that my proposal is logged, but whether it will become the subject of an inquiry remains uncertain.

Those are the facts as they stand.

I find aspects of this situation deeply unsatisfactory, but I would rather explain honestly where things stand than dress the situation up as a major breakthrough.

There is still a great deal to do.

So, once again, please do not stop signing, sharing and talking about this petition simply because progress is slow. If anything, the responses I have received reinforce why the wider questions deserve attention.

If you want change, YOU have to help create the conditions for it.

That means more than agreeing with an update, leaving a supportive comment or hoping somebody important eventually notices.

It means getting involved in whatever way you realistically can.

So, if you believe people with persistent TMJD deserve better answers, clearer pathways and more consistent access to appropriate care, please help keep the pressure on.

The invitation remains open.

As always... Thank you to everyone who has signed, shared the petition or taken the time to follow/actually read these updates. I do still appreciate it.

Now let's see whether we can turn some of that support into something more substantial.

Take care,

Lawrence