NHS waiting times and trigeminal neuralgia: a winter update from your CEO
This winter, many of you are living with the impact of NHS waiting times and trigeminal neuralgia at the same time. You might be waiting for neurology appointments, scans, surgery dates or answers, while trying to manage one of the worst pains known in medicine.
In this update, I want to explain where the NHS is right now, what the government’s 10 Year Health Plan says, and what that really means if you live with trigeminal neuralgia or facial pain. I also want to set out what we at TNA UK are doing with that information, every single day.
Where the NHS is on waiting times this winter
NHS England’s latest figures show that around 7.4 million people in England sit on a waiting list to start planned hospital treatment. Only about six in ten patients on that list begin treatment within 18 weeks of referral. The NHS Constitution sets the standard at 92 per cent and the service has fallen short of that for many years.
Independent analysts point out that, despite record levels of activity, the overall list has only shifted from 7.5 million to 7.4 million in a year. For patients, that hardly feels like progress.
At the same time, flu and other winter viruses are rising. UK Health Security Agency surveillance for late November shows flu infections and hospital admissions increasing, with test positivity around 17 per cent and admissions close to 8 per 100,000 people. Those patients occupy beds and draw staff away from elective work throughout December and January.
Put bluntly, the NHS enters winter with a very large waiting list, too few people treated within the 18-week standard, and extra pressure from seasonal illness. That is the system many of you must navigate.
When referrals fall into a “black hole”
A growing number of members tell us the same story: “My GP says I’ve been referred, but I’ve heard nothing for months.”
Healthwatch England’s latest report on GP referrals confirms that your experience is not unusual. In their survey, one in seven people with a GP referral ended up in what patients call a “referral black hole”. The referral came through late, went missing, was rejected or never left the practice at all. Three-quarters of those affected said their health or well-being got worse while they waited, and most only discovered there was a problem because they chased it themselves.
Severe facial pain makes this even more dangerous. Instead of reaching the right specialist, you can bounce around the system. You see the dentist again. You get sent back to the GP. Teeth come out. Pain escalates. Daily life shrinks around the next attack.
Here is where NHS waiting times and trigeminal neuralgia collide most cruelly
: the worse the pain gets, the more often people are told to wait.
The “one in six” and the reality of neurological care
Trigeminal neuralgia sits inside a wider neurological system that already struggles to keep up.
The Neurological Alliance estimates that at least one in six people in the UK live with a neurological condition. That is a huge part of the population. Their flagship project, My Neuro Survey, shows how far services still have to move.
The latest findings show that:
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Only around one in three people with a neurological condition feel the care they receive meets their needs
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Many experience long delays to diagnosis and follow-up appointments
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Mental health support for neurological patients remains particularly poor
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Among those who needed it, most could not access neuropsychiatry or neuropsychology, and almost half could not get counselling
These national figures match what you tell us. People wait too long to be diagnosed, too long between reviews, and often feel they are holding everything together on their own.
What the 10 Year Health Plan says
In July 2025, the government launched Fit for the Future: the 10 Year Health Plan for England. The plan openly admits that:
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Waiting lists for hospital and community care have ballooned
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Many people struggle to get basic GP and dental appointments
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Staff feel demoralised
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Outcomes on major conditions still lag behind other countries
Ministers promise three big shifts:
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More care delivered in the community rather than hospital
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Better use of digital tools and data, including a stronger NHS App
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A move from late crisis response towards earlier prevention
Alongside this, the plan talks about restoring the 18-week treatment standard and connects to a longer-term workforce plan for the NHS.
On paper, all of that sounds reasonable. The real test for us as a charity is simple: do these changes improve life for people living with trigeminal neuralgia and facial pain?
What trigeminal neuralgia feels like in this system
The NHS describes trigeminal neuralgia as sudden, severe facial pain, often like an electric shock or stabbing pain in the jaw, cheek or teeth. Attacks can be so intense that you cannot do anything while they last. Triggers often include:
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Speaking
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Eating and drinking
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Brushing your teeth
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Washing your face
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Changes in temperature
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A light breeze or cold wind on your face
Specialist centres and patient groups have called trigeminal neuralgia one of the most painful conditions known in medicine. Many people also know it by the grim nickname “the suicide disease” because the severity and unpredictability of the pain can drive some towards suicidal thoughts.
Now combine NHS waiting times and trigeminal neuralgia.
Members often describe long, painful journeys before anyone names the condition. Dentists suggest treatment first. Teeth are removed. Antibiotics and general painkillers come next. Neurology appears much later, and by that point, some people already feel traumatised by what they have endured.
Diagnosis does not always end the delays:
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Neurology appointments may be months apart
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MRI scans and other tests can take a long time to organise
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Access to neurosurgery or advanced pain procedures often feels uncertain
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Medicines are tried in sequence, with side effects and no clear plan if they fail
Very few people tell us they receive mental health support as part of their pathway, even though recent research links trigeminal neuralgia to higher rates of depression, anxiety, sleep disturbance and suicidal thoughts.
Winter pushes everything further. Cold air and wind act as common triggers, so many of you avoid leaving the house, pull scarves tightly over your faces or keep windows closed because a single gust can set off a shock of pain.
What am I doing about this as your CEO
TNA UK cannot limit itself to describing the problem. My job, as your CEO, is to take what you tell us and the best national evidence, and make sure trigeminal neuralgia is heard in the rooms where decisions are made.
Right now, that means three main areas of work.
1. Putting TN into every national neurology discussion
Through our work with the Neurological Alliance and the Act Now for the 1 in 6 campaign, I keep bringing trigeminal neuralgia into conversations about the 10 Year Health Plan and the NHS workforce plan.
In meetings with officials and clinicians, I ask clear questions:
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Are people with trigeminal neuralgia being diagnosed faster?
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Do referrals reach neurology without falling into “black holes”?
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Are neurology and neurosurgery lists protected when winter pressures rise?
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Does mental health support form part of TN care, rather than sitting outside it?
If the answer to those questions remains “no”, then the long-term plan is not yet working for the people in the worst pain.
2. Standing beside you while you wait
Our helpline, email support and regional support groups exist so you have somewhere to turn while the system moves slowly.
Through these channels we help you:
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Understand what clinicians are saying
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Prepare questions for appointments
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Make sense of conflicting advice and information
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Feel less isolated when pain, fear and frustration are overwhelming
Each call, email and group meeting shows us where the system fails. Real stories carry weight. When I say to a commissioner or policymaker, “This is what is happening to our members,” I speak from your lived experience, not from theory.
3. Building the evidence base for change
Over the last year, we have carried out the largest UK survey of people with trigeminal neuralgia and facial pain. The responses are powerful and consistent. They confirm much of what My Neuro and other studies already show, but in your own words.
Our team is now checking and preparing that report so that, when we publish it:
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Every figure stands up to scrutiny
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Every quote is used responsibly
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Every recommendation is realistic and targeted
For this update, I have deliberately not quoted detailed survey numbers because the report is not yet public. When we present those findings to the NHS, government and media, I want them to be beyond dispute.
What needs to change, from our perspective
Across national data, international research and everything you tell us, the priorities look clear.
We need:
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Earlier recognition of TN symptoms in primary care and dentistry, so people reach neurology before years of avoidable procedures
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Protected capacity in neurology and neurosurgery, so winter flu does not wipe out access to life-changing treatments for facial pain
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Mental health support is built into neurological care, not bolted on at the end or refused because the condition is “physical”
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A funded implementation plan for neurology within the 10 Year Health Plan, so broad promises turn into real changes in clinics, wards and waiting rooms
These are the messages I take into every conversation. They rest on evidence, and they arise from what you live through every day.
A personal word to you
If you are reading this while you wait, and you feel tired of plans, graphs and strategies, I recognise that feeling. Numbers do not stop a shock of pain. Policy documents do not remove the fear of the next attack.
What I can say is this: you are the reason I do this work.
It is wrong that people in such severe pain are asked to wait in silence, to prove themselves again and again, and to hold their lives together while the system slowly responds. I see that clearly.
I will keep using my role and TNA UK’s voice to make sure trigeminal neuralgia features at the highest levels. At the same time, we will keep doing what we do best: being there for you, one person at a time, when the NHS feels slow, confusing and distant.
Please keep using our helpline, our regional groups and our online support. Please keep telling us what is happening in your area. Every story helps us argue for better care, shorter waits and safer pathways.
You are not at the back of our queue. You are at the centre of our work.
With warm wishes,
Aneeta Prem
Chief Executive, Trigeminal Neuralgia Association UK