The exhaustion of fighting for medical care
Yes this is a bit of a rant, but bear with me
I can count the days I haven’t had a headache far more easily than the days I have. It’s been three years of daily, chronic headaches and migraines. Excruciating pain that stops me from working, living, from doing anything much beyond enduring the pain. And for three years, I’ve been trying to get help from neurology through the NHS.
Three years of waiting. Of referrals. Of chasing. Of being told I need specialist care but never actually getting it.
I’ve been waiting since July 2022, and yes we are now in 2025. I got an appointment…finally…only for it to be cancelled a week before it was meant to happen, pushed back by a whole year. That year has come and gone, and they’ve done the exact same thing again. No explanation, no new appointment, just another cancellation. This comes days after me confirming that I’m still in need of the appointment.
It’s exhausting. Because now, after waiting all this time, I have to start again. I have to fight to get a new appointment and be ready for last minute changes, cancellations and continued waiting, with no intermin care in the meantime. When I do finally get there, if I do, I’ll have to fight again to be taken seriously.
The GP says there’s nothing more they can do. I need to see neurology, but I can’t get a neurology appointment. And I’m not alone in this. As of December 2024, the NHS waiting list stood at 7.46 million cases, with approximately 6.24 million individual patients awaiting treatment. Of those, 3.06 million have been waiting over 18 weeks, and nearly 200,000 have been waiting over a year. In neurology alone, over 150,000 people were waiting for an initial consultant appointment by March 2021, and more than 60,000 were waiting for neurosurgery—with over 10,000 waiting for more than a year (BMA, Neurological Alliance).
These aren’t just statistics. They are real people, people like me, stuck in limbo, unable to access the care we need while our conditions deteriorate. Headaches are a hard one to explain. to people because we all experience them, but chronic, debilitating ones impact my mood, energy, ability to focus, work and be myself. I’ve had numerous struggles to get support within my postcode, support is so far stretched or non existent. The postcode lottery of receiving the care you need is infuriating and at this point if I could move postcode, I would. But of course, given the recent statistics, this. is a much more systemic problem than only postcode.
This isn’t an attack on the individuals within the NHS. There are so many people doing incredible work under enormous pressure with grace, resilience and kindness. But that doesn’t change the fact that the system itself is broken. It’s failing the people those it’s trying to serve and the workers. of the NHS are trapped between a rock and a hard place.
People often talk about the invisibility of mental health struggles, but chronic pain is invisible too. Migraines and headaches that leave me unable to function aren’t something you can see, but they are there, dictating my life, limiting what I can do, and leaving me drained before I even begin the battle for help.
And it is a battle. One that so many people are fighting.
So if you’re also trapped in this cycle, waiting endlessly, being passed from one department to another, told that you need care but finding it impossible to access it, please know I really can empathise. The exhaustion, the frustration, the hopelessness. The way it wears you down until you don’t even have the energy to push for the care you know you need.
You shouldn’t have to fight this hard just to be heard.
Sending love to anyone else stuck in this system. And I have so much respect for the mask and brave face we all have to put on to get through each day, because let’s face it, if we always rested when we didn’t feel good, no-one would see us.
Next steps
I know people will recommend I contact PALS. And I will. But today, I just don’t have the energy. That’s part of the problem, when you’re in chronic pain, the system expects you to fight for care when you barely have the capacity to get through the day. It’s exhausting.
If you’ve been through this or just feel exhausted by the fight it takes to look after yourself, I hear ya. You’re not alone. My inbox is open if you ever need someone who understands.
In the meantime I am sending you the strength and courage to build yourself back up to a point where you can advocate for yourself once again. As we know, it takes one kind receptionist, doctor, nurse to feel heard and supported.
Resources and further reading
Patient Advice and Liaison Service (PALS) – If you need to escalate a complaint or chase an appointment, you can contact your local PALS office for support. (UK based)
Find your local PALS
NHS Waiting Times Data – December 2024
BMA Analysis
Neurological Services Waiting Times – March 2021
Neurological Alliance Report
