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Part II - The Waiting Game



Disclaimer: I am more than happy for this article to be shared, but please ask for my permission before quoting.


As you’re reading this piece, please imagine a metronome ticking in the background. It is set to a tempo of 3 ticks per 24 hours, and starts on the day I arrived back in the UK; May 8th, 2021.


Tick. (1)


No sooner had I felt the comforting Gatwick drizzle that marks the end of a trip away, than I was heading to another glamorous destination for the British holidaymaker, The Isle of Wight. My parents live there now, and it made sense that I would convalesce at their home where I could be looked after. Reverting to type, I started this new chapter with yet another compulsory 10-day isolation period. It wasn’t so bad this time round. My physical, mental, and emotional exhaustion meant I slept for most of it.


Towards the end of the ten days, my thoughts turned to what my healthcare might look like now I was on home soil. My experience with the Spanish public health system (on which I could write an agonisingly dull, pedantically bureaucratic novel) had left me with a sour taste in my mouth. I had hoped that, back in a health system in which I am A) registered and B) fluent in the language of, things could only get better. How wrong I was.


Tick. (30)


May 18th, first contact.


I have a lot of sympathy for the reception staff at NHS GP practices. If I spent my working week as a verbal punching bag for the disgruntled ill population of the country, I too would probably develop a rather prickly demeanour. That being said, the local GP receptionist I dealt with that day was a particular dragon. I explained my situation; that I had returned to the country with serious long term health conditions and needed access to healthcare while I stayed with my parents to recover. I did not live locally, but I would be staying locally for the next couple of months. A frustrating conversation ensued, ending with a disingenuous apology and a figurative door being slammed in my face. I wasn’t a resident, and they weren’t interested. I won’t bore you with the details of the form filling obstacle course I then went on in an attempt to gain ‘temporary residents emergency healthcare’. But you’d be right in assuming I was unsuccessful and was told I’d have to sort myself out over the phone with my GP in London.

Downtrodden and dismayed, I gave up for the day. Perhaps I would have better luck tomorrow.


Tick. (33)


Back to square one then, this time over email. I explained that I had been diagnosed with epilepsy stemming from a Severe Traumatic Brain Injury, and that it had been triggered by COVID. I was also running out of the anti-convulsant medication I had been prescribed in Spain (which itself wasn’t working.) Attached, were all the relevant medical documents. I didn’t encounter the ‘can’t someone else sort this out’ attitude this time round. The receptionist answered my email and called me urgently. They were understanding and told me I had been booked in for the soonest available GP appointment in 2 weeks’ time. What was the point in that? I needed to see a neurologist, not a GP.


“Okay thank you…the thing is, I don’t really need to speak to a GP. I already have a full diagnosis, it’s all there in the documents I sent you. I just need to be referred to a neurologist as soon as possible. Aren’t you able to do that?”


“A referral to a specialist has to be made by a GP, I’m afraid there really is nothing else we can do.”


Their hands were tied. The bottleneck in the system wasn’t their fault. At least they weren’t as dismissive as the lady the day before. I’m a patient person. I could do 2 weeks.


Tick. (75)

The somewhat arbitrary phone appointment with the GP 2 weeks later went as expected.


“Hello Mr Bishop. I’ve read the documents you sent in. You need to be referred to a neurologist which I’ll do now. That will be at Kingston hospital.”


Resisting the urge to say, “I tried to tell them that two weeks ago,” I thanked the GP and double checked she had issued a prescription for the medication I was on. Later that afternoon, I contacted the Neurology department at Kingston Hospital to enquire how long I’d be waiting for the appointment I so desperately needed.


“Well, there’s quite a large backlog, but you’re an urgent case…so I imagine it will take around 5-6 weeks.”


I had braced myself for an answer like this. I wasn’t naïve to the circumstances the NHS was in. The strain on the system was unprecedented. It wasn’t ideal, but I’d lasted 6 months until now. I had another 6 weeks in me. Just about.


Tick. (174)


On 5th July, my referral letter arrived.


If you’re unfortunate enough to fall ill (which most of us will at some point), finally reaching a milestone like this keeps you going. A wave of palpable, euphoric energy filled my body, washing the weeks of anxiety away. It felt like hope.


“Dear Mr Bishop,


We are pleased to tell you that we have arranged the following appointment for you:


Clinic: Neurology – Kingston Hospital


Time and date: 09:00 GMT Wednesday 3 November 2021


Location: This appointment will take place by telephone.”


NOVEMBER?!


The wave lurched inwards, twisting itself into a nauseating knot in my stomach.


The earliest available appointment with an NHS neurologist was 17 weeks away. If I count from my first contact with the NHS, it’s 24 weeks. That’s almost a 6 month wait for an ‘urgent’ patient with a Severe Traumatic Brain Injury, epilepsy, and a myriad of debilitating Long Covid symptoms from which I still suffer to this day. So that’s it. That’s the reality of the NHS waiting list. Announcements on the news of ‘NHS waiting lists are at their highest level since records began in 2007,’ appear to be falling on deaf ears. So, there it is in black and white. It’s as dangerous as it is terrifying.


If you hadn’t figured it out, the metronome ticking in the background of this story is playing at the tempo of my nightly seizures. (Based on my overnight EEG in Spain, which recorded 4, but I’ve used a conservative 3.) Some rudimentary multiplication reveals an alarming statistic: The days between my NHS Neurology appointment and the day I first contacted them (169), multiplied by 3, comes to 507 seizures. It was at this juncture that my family and I made the decision to go down the eye-wateringly expensive, private route. 82 days after returning from Spain, I finally saw a neurologist on July 29th, 2021. That was nearer the 219 mark.


It is not lost on me that, despite all my misfortunes over the last few years, I am in some ways incredibly lucky. Not only do I have a place to live, and no dependents relying on my income. Thanks to my parents, I have also been afforded a resilient safety net that caught me when my life and health were in freefall. But there are countless people out there who don’t have such a luxury. As of last October, the NHS waiting list for non-urgent hospital treatment reached 5,975,216. If you’re not on it yet, you probably will be soon. And who do we expect to magic it better? The NHS staff. So, if you’re asked the question; “Who are the forgotten victims of this pandemic?” The answer isn’t just the poor souls on that list. It’s also the doctors and nurses we thanklessly expect to slog through it.


The metronome I set off on May 8th is still ticking. But, and I say this with trepidatious optimism, I think it’s starting to slow down.


Tick. (801)




Email: longcovidman@gmail.com or DM me on Instagram/LinkedIn (Buttons at bottom of page.)





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