Neglect in the time of Corona

These past six months have been undoubtedly difficult for everyone, we are facing unprecedented times after all. And I honestly feel that during this time I have been somewhat neglected. I’ve felt forgotten and invisible. To put these feelings into context, here’s a rundown of what I’ve been dealing with the past few months…

The consultant (Some time at the end of July)

Because of COVID-19 face-to-face appointments have become a thing of fantasy. And although I had a phone appointment with my consultant at the end of July, I’ve been left with a lot of anxiety and a lack of closure. I fully understand the reasons behind the notions currently in place but not being able to sit down with my consultant, look her in the eye and discuss my concerns and issues is hard. A lot has changed with my epilepsy these past few months. My VNS device is becoming more and more efficient. I finally have control over my seizures, so why am I on multiple anti-epileptic drugs? How can I sort out my sleep? Is my stupidly low blood-pressure something we should look further into? Is it really ok to be on intoxicating medication?

During this ‘appointment’ with my consultant we agreed to make some changes to my meds. Despite my blood-pressure being low, I’m on beta-blockers to help control my migraines. It was agreed that the medication I’m on has run its course and I should switch to a different but similar drug. She also suggested I split the dose of what I call my ‘dizzy pill’ in order to no longer get so dizzy when I take it.

It’s taken six weeks and a hellish amount of stress for me to even get those prescriptions…

The GP (First week of August)

As I discussed in my birthday blog, at the start of last month I was really down. Like full blown severely depressed. And it took six separate phone calls before I spoke to a doctor.

When a patient with known depression, who hasn’t been seen in six months, phones a medical practice saying they are extremely low, they should be given an appointment immediately. Instead I was instructed to fill out an online e-consultation form. And five questions into the mental health questionnaire, a bright red banner appeared instructing me to call 111.

111 sent a message through to my surgery and suggested I call first thing in the morning to make sure I got an appointment. The following day I made FOUR more phone calls before eventually speaking to an actual doctor.

He increased my anti-depressants and I filed an official complaint based on how the overall situation was handled. The surgery since has admitted they made an error but the fact is the systems currently in place do not serve all needs. I’m autistic, it says so on my file. As soon as I made that initial call to my practice I should have been given an appointment. Instead, I was turned away.

The GP II (Last Week)

So, August hits and I begin to feel much better. The med increase has clearly helped and all is good. Until I need to order more of my new, smaller anti-depressant. For context I went from taking 10mg to 15mg, so now take one 10mg tablet and one 5mg tablet. However, the prescription for the 5mg tablets that I was given after my eventual phone appointment wasn’t on repeat, meaning yet another call to directly request the pills.

I was then told by the on-call doctor that I was due a medication review and advised not to order any of my pills until after this. We arranged it for the day before I ran out of meds to make sure I didn’t run out of anything. During this chat it was also confirmed the med changes agreed between my consultant and me (remember the start of this long story back in July) had not been passed on to the GP at all.

Seeing as I wanted an appointment with the nurse anyway, the doctor decided to just book me in with her and let her do the review. So I sent a nag via email to my consultant, asking that she send the med changes through to the GP asap and waited to receive my call.

The GP III (Yesterday)

So appointment day came along. I had two doses of my main AED (Phenytoin) left. The nurse then announced she couldn’t do my review as she doesn’t know about all of my meds and I haven’t had my Phenytoin blood-test recently enough. The last time I asked the surgery to refer me for said blood-test I was rudely told this wasn’t possible. How am I meant to keep track of when I need to get it done when there’s so much inconsistency and my memory has been destroyed by 22 years of medication?

We arranged a face-to-face appointment to discuss some things and get the blood test done next week and I explained I had no meds. She said she’d talk to the on-call GP after lunch and get her to text me about my meds.

I waited. I got anxious. I listened to BoJo babbling on about COVID. I panicked.

I knew I needed to talk to someone who actually knew what they were talking about soon or I was going to totally lose it. So, accompanied by my dad, I got in the car and headed up the road to the surgery, emotions blazing and self-control fading. I called them on the way and the initial issue of me running out of meds was sorted but I still needed more. I needed proof that someone was aware of my med changes and something was going to happen soon before COVID becomes more intense again. So we headed inside.

Despite there being a protective barrier around the entire front desk, the receptionist insisted on speaking through a dodgy coms system. She confirmed the ‘letter’ had been received and the doctor would look over it tomorrow. When I asked if I would get a call after, she asked ‘why?’.

I mean isn’t it obvious. I want confirmation. I need reassurance.

Anyway, we got home and sure enough I got a call saying the doctor had already looked over it and sent the prescriptions through to the pharmacy. All sorted, or at least you’d think it was.

Pharmacy (Yesterday)

At about 5:30pm I walked up the road to the pharmacy to collect all my meds. As the prescription had only just come in there was a wait. Fair enough. But when I returned from my detour visit to Waitrose, I was greeted with the news that they didn’t have Phenytoin in stock. I only had two doses left.

The pharmacist did what he could, getting me as many pills as possible and made sure to write a note in regards for what they still owe me (multiple pills were not in stock). He said he was surprised as I normally give them plenty of time. And I do. I had a such a hard time getting pills last summer (a story I’ve never actually fully written up) that I always make sure to order 2-3 weeks in advance. But I was advised against this by the GP last week. I was given false information and consequently an extreme amount of stress.

The reality is ongoing conditions don’t pause or disappear just because there is a global pandemic, if anything they become more significant. And I just don’t understand why no-one’s been ‘keeping an eye one me’. Increased suicide rates have been (not proven) reported in regards to multiple age groups. The affects COVID may have on one’s mental health has been discussed continuously throughout this time. And yet I was left without any sign that anyone was willing to help me.

What happened to the 750,000 NHS Volunteer Responders? Why aren’t they contacting ‘vulnerable’ people in their areas? What happened to our National Health SERVICE?

Now I don’t want to disregard or disrespect the NHS in any way. It is an amazing system that I am beyond grateful to have access to. I understand things have been beyond difficult. The whole world has been at its limits and the NHS especially. But COVID rates begun dropping months ago. Where’s the follow up? I last saw my GP about my mental health in January, they’re meant to check up with you frequently!

Something needs to change. If it doesn’t hundreds of others like myself are going to start falling through the expanding cracks. We all know COVID is back on the rise. Appointments are just going to get tougher again. So alternative forms of support need to be in place. I need to know that if I feel low, or the new meds have a negative effect, I can get help.

It shouldn’t take six phone calls to get help!

I’ll repeat ongoing conditions don’t pause or disappear. So if you know anyone dealing with a long term health problem. Reach out to them. Ask how they are. This time is hard enough without having to deal with an ongoing condition alone.