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Opinion: I have MS, how can you justify not giving me a vaccine yet?

Dearbhla Crosse is in Cohort 4 of the vaccination rollout, but she believes people like her are being left behind.

Dearbhla Crosse

I’M SICK. BUT not sick enough. At least this was the overarching message I took from an announcement last month that I had been removed from all cohorts for vulnerable people. I have Multiple Sclerosis (MS), a chronic neurological disorder that affects the nervous system.

My immune system is like a troop of lemmings hacking into the protective layer of my nerves, which results in symptoms ranging from numbness and tingling to optic neuritis and mobility issues. I am on medication to suppress my overactive immune system, but that, unfortunately, leaves me vulnerable to illness.

My medication is in the form of infusions, which means I have to attend hospital each month where I am in a room with up to 10 other people. It’s hard to explain the apprehension that accompanies these visits. While cases remain high so too does the risk of exposure.

Life without contact

Like so many, I have been cocooning on and off for the last year. By February 2020, I had ordered N95 masks, such was the depth of my anxiety. Much of 2020 was a fairly terrifying experience. Every step outside seemed flush with danger.

Sometimes even now it’s hard to understand that not everyone is as gripped by the same fear; I still sanitise the shopping. Getting the vaccine would make hospital appointments less anxiety-inducing, trips to the supermarket infinitely less scary, and walks outside, even when masked up, less risky.
Everything seems like a game of minesweeper when you have a weakened immune system. You’re only as safe as your last excursion, as limited as these are.

All MS patients are in the clinically vulnerable category in the UK because even if we don’t get horribly sick or die, we could have a relapse, which is a worsening of symptoms, or a whole set of new ones.

For many, this could mean losing the ability to use a limb or any number of neurological progressions. Having to basically say ‘I volunteer as tribute’, like Katniss from the Hunger Games, to my GP in numerous emails is a sad indictment of our vaccine rollout.

I also emailed my TDs and went to my neurology department who told me to call my GP surgery again. After this to-and-fro dance for months, I was finally told last week that I am in Cohort 4, although I still don’t have a vaccination date.

Unfair rollout

Non-patient facing HSE staff have been vaccinated ahead of those of us in Cohorts 4 and 7. A malfunctioning IT system has meant that some people have been called multiple times for an appointment to get a vaccine they have already received.

In the meantime, thousands of clinically vulnerable people are still waiting for their first. On one day, there were 500 no shows in Citywest after duplicate appointments were made.

Apparently, no vaccines were wasted, yet no details were given on who received them either. I tell you who didn’t receive them, I didn’t. Nor did any of my vulnerable friends who are still waiting. Perhaps if we all had underlying wealth conditions, we may have been bumped up the list sooner?

Vaccine access should be based on medical vulnerability, they are not a privilege. The ethos of arrogance within the highest echelons of Irish society has seen the entitled clambering for vaccines ahead of the most high risk.

In the case of the Beacon Hospital, surely they could have found patients within the hospital itself to vaccinate ahead of teachers at a privileged secondary school. As a qualified primary school teacher, I understand the horrors of having to go into a classroom unprotected. It is why I am not teaching right now. Yet, there is an injustice in queue skipping.

Frustration

Watching our friends in the North receive their vaccines, while ours seemingly continue to arrive at leisure via carrier pigeon, has been frustrating. Especially as even with the supplies we do have there is still no clarity on where many of the most vulnerable lie amidst the cohorts.

Dividing the “vulnerable” into two categories makes as much sense as a chocolate teapot. We shouldn’t have to fight for a vaccine or argue over who deserves one the most. This lack of clarity pushed some of us to establish the Vaccines4Vulnerable campaign, which asks the government for a clear commitment to vaccinate ALL the most medically vulnerable, irrespective of age.

Amidst the uncertainty, it has provided a sense of control and solidarity for those of us on the periphery, pleading to be prioritised. Many of us with chronic health conditions are still waiting, and now with the removal of AstraZeneca for the under 60s, the wait will undoubtedly be longer.

Communication roulette, information leaks and unclear priorities have muddied the Covid response. Up until a few weeks ago, thousands were still arriving through porous borders spreading new variants, their shiny white teeth reflected on the tarmac as they disembarked from Tenerife.

All the while we have had to stay within the confines of four walls for the better part of a year. The government has had ample time to sort out the pressing issues over the rollout, and now that supply is (hopefully) ramping up, they need to ensure it’s done in a more efficient and ethical manner.

We need a central vaccination focal point. There needs to be better communication between the HSE, GPs and hospitals, and we need more women on a Covid advisory board, any women would be a good start. There should be an official register of people with chronic health conditions like there is in Denmark, a population total similar to ours.

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This past year has been incredibly overwhelming and I grieved for a part of my life that I lost. Nobody has been left unscathed. We are all fed up and millions of people have curtailed their lives to help save the lives of others. Like most, I would love a return to some semblance of normality, whatever that is, whenever that may be.

Unfortunately, we are all aware by now that opening up the country at this stage, when most of us haven’t had the vaccine could result in more deaths and an inevitable shut down all over again.

The pandemic has shone a light on the abysmal lack of investment in the infrastructure of our health system. The fact that we even have a vaccine seemed unimaginable a year ago so I do feel fortunate that eventually, I will have access, unlike millions in less wealthy nations.

But it is time the government acknowledged that the wealth of a nation is in the health of its nation and not the other way round. Perhaps our lack of prioritisation is indicative of a society that never really included us in the first place.

Dearbhla Crosse is part of the Vaccines4Vulnerable campaign.

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Dearbhla Crosse

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