This morning, the NHS apologised to me.
The NHS, whose staff have run themselves into the ground this year as we stood on our doorsteps, unable to offer much more than a clap or the clatter of a wooden spoon against a saucepan. The NHS, now embarking upon the nation’s most ambitious vaccination drive ever. The NHS, now writing a letter, apologising to me.
My first thought was ‘why?’ My second was, ‘Oh. Oh no.’
It’s been a little over three months since I underwent a hysterectomy. Today, I have to strain my eyes to see the three small division sign-shaped scars scattered faintly across my abdomen. The biggest wound, the fourth which stretches one inch below my belly button, is slightly more obvious, but still pretty negligible. The tiny nature of their visual belies the absolutely life changing impact they’ve had on me. Medicine is a marvel, laparoscopy magic, surgeons gods to whom I bow in astonishment.
Officially, I’m still in recovery, a process that can take six months. It doesn’t feel that way. I now sleep through the night, pain-free for the first time in my adult life. The weird twinges that I never associated with my endometriosis or adenomyosis are gone – turns out, one ovary was fused to my pelvic wall, one fallopian tube connected, via a mass of adhesions, to my bowel, the constant tugging of daily life causing weird twists and tears I could never explain. The surgical photographs were quite something.
The huge pain, the agony that would knock me to the floor every 28 days like clockwork, is gone too. And when I get the weepies once a month, I marvel with incredulity that two men were clever enough to remove so much of my damaged insides that they could leave me pain-free, and yet rescue my ovaries from the purge, sparing me what would have been my third, medically-induced (this time permanent) menopause. I am 38, I retain a hormonal cycle, I have been given a new life, and my gratitude knows no bounds. Medicine owes me no sorries.
So, why the apology? Well, I paid for my surgery. I was given exceptional care in a private hospital where I was able to recover in a room furnished with endless cups of tea, a walk-in rain shower, the good drugs and a Netflix-equipped widescreen. And as it transpires, had I not done so, I’d still be waiting for my life to change.
Waiting list woes
As any woman with a gynaecological condition knows, a surgical referral is not an easy thing to come by. Hell, in the case of endometriosis, we can’t even take diagnosis as a given. Pre-COVID, that took an average of 7.5 years. Today, that wait is getting longer.
To receive my own referral, I had to first undergo two chemical menopauses, countless hormone supplementations, and a six-month experience of the Mirena coil that in my particular case, thanks to uterine deformity, felt like an experience in torture.
By the time I was referred for a hysterectomy, I’d been suffering from ever-increasing cyclical pain for 20 years. I didn’t just want a hysterectomy. I needed one.
And yet, the vast majority of gynaecological surgeries, basically those not relating to a confirmed cancer, are deemed elective. When I was finally referred, at the turn of 2020, I was informed that the waiting list for such elective surgeries was running at double the target 18 weeks. Three months later, elective surgeries were cancelled as a result of the incoming pandemic. The waiting list has been growing ever since.
Which brings us to my letter. Somewhere along the line, there’s been a glitch in the communication matrix. The fact I opted for private surgery has clearly not yet made it far enough along the bureaucratic communication lines to see me removed from the waiting list. And so, the NHS wrote to apologise for the fact I am still awaiting a surgery date.
“As you may be aware,” the letter opens, with an admirable degree of understatement, “the ongoing coronavirus pandemic has had a profound impact on all services within NHS Lothian, including the endometriosis surgical service. From March 2020, all non-urgent hospital appointments and admissions were cancelled, which has significantly impacted on the already lengthy waiting time for this type of surgery.
“Due to the delay, we would like to offer our apologies that your surgery has not yet taken place. In addition, we would like to reassure you that your position on our waiting list remains.”
The reassurance ends there. There is no estimation of a new surgical date given. Instead, the letter says that if I experience an increase in pain I should call a given number and leave a message. In the meantime, it continues, I might find the website for Endometriosis UK helpful.
Now, Endometriosis UK is indeed a helpful website. But I’d suggest that it’s probably already familiar to any woman far enough down the endometriosis path to have been referred for surgery. I also know a website can’t conduct such operations.
So just how long would I have been waiting? NHS Lothian can’t say, but my surgeon, who like so many private consultants also operates within the NHS, admits it may take “a couple of years, potentially” for waiting times to return to normal (I reiterate, normal in my region is double the target 18 weeks) unless significant new funding is found. Is anyone feeling hopeful that there’s a pot of cash for endometriosis care to be found somewhere down the back of a government sofa right now?
What really wrankles here is the terminology. Non-urgent. Elective. Surgically speaking, of course, I understand that endometriosis is non-life-threatening and thus less critical than many other procedures. But for sufferers, it feels pretty damn urgent.
I hesitate to say that I was lucky to be able to pay for private surgery – in the midst of lost earnings, I was only able to do so because my own grandmother died of COVID in April and left me a small pot of cash that covered my procedure. That didn’t feel like luck then, and it doesn’t now. Yet, I know that I am fortunate to have had the means, wherever they came from, when thousands of other women don’t. The crippling pain they are suffering right now, with no surgery date lighting the end of the tunnel, will feel devastating to them.
Coronavirus has created many fissures in our society. We’re facing a mental health crisis, impacting without prejudice on even previously healthy and chipper people. An unemployment surge hitting workers from across the career spectrum, though most critically upon women, who remain more likely to be at risk of redundancy, more likely to work in industries shut down by the crisis. The only thing most women are getting the lion’s share of this year is childcare responsibility, and I’m not sure many asked for that.
Ask yourself, how would this picture look if you added in a chronic pain condition that necessitated regular absences from work? That often left you unable to carry out basic household tasks, let alone professional or childcare ones? Would you feel safe? Would accessing a solution feel elective? Would a website help?
What would help is if women’s health was to be prioritised, finally, to a position in which gynaecological concerns are treated with the seriousness they warrant. Endometriosis is among the top twenty most painful chronic conditions known to medicine. Treating it as such is not a non-urgent suggestion.
So, today, I’ve taken my name off the waiting list myself over the phone, excused myself from the queue, one less woman for an increasingly beleaguered surgical team to get to. Thousands more women on lists up and down the country remain there, and I feel for them with every fibre of my being.
In the meantime, the NHS owes me no apologies. But those who have underfunded it for years, who have put it on the table as part of trade negotiations, who have clapped for it while refusing its staff payrises and who now expect it to save us, once again? They owe the NHS an apology, as well every woman in this country. Sadly, though, I fear they’ll be slightly slower in coming forward than our doctors…