Readers' View: 'I've started so I'll finish' - Terminal cancer patient on his determination to see change in time he has left

John Wall made headlines in recent weeks after taking to social media asking the HSE for an explanation as to why his medical card has been revoked twice since his terminal diagnosis of stage four prostate cancer two years ago. Here he reflects on what has happened since and why he is determined to see his battle through to conclusion.

In recent weeks my interactions with various institutions and departments of this state have become a talking point amongst many in the media and I’m sure a hindrance to others.

It all started with an attempt to seek clarity on something that admittedly I wasn’t even looking to be reinstated, my medical card.

Over the last 12 months or so, primarily as a result of my diagnosis, I’ve been advocating on behalf of all of us that utilise our public health system whilst also creating awareness of what got me here in the first place, Stage 4 Prostate Cancer.

It’s a terminal diagnosis for me, one that could have been avoided quite easily if I had the sense to have had an annual health check with PSA test included.

Any 30-something males out there should be visiting your GP once a year. More often than not we wait for a problem rather than pre-empting one before we make that visit. Don’t make the same mistake I did, it could save your life.

Back to this whole saga.

Looking back over my records around four months ago, I discovered my application form for an emergency medical card which I initially received towards the end of 2017. It was gratefully accepted at a time in my life when we needed as much assistance, financial and otherwise, as we could get.

Being as I was in the middle of life-prolonging treatment, I didn’t think too much about it at the time. It was subsequently revoked six months later based on a means test which I appealed. That decision was upheld by the HSE who rescinded it again two months later.

John (far right) with his children Lauren (15) Ronan (18) Maeve (12) and his wife Deirdre with John Wall.
John (far right) with his children Lauren (15) Ronan (18) Maeve (12) and his wife Deirdre with John Wall.

I discovered that an emergency medical card was valid for 18 months, not subject to a means test and issued within a couple of days. That was where this all started. I fought in vain to retain my card based on the said information so I referred the issue to the Ombudsman’s Office.

From this point on, at no stage did I ever state I wanted the card back. I just sought clarity surrounding the governance of the terms and conditions which applied.

Unfortunately, though it was obvious from the start that it was the HSE who were pulling the strings in relation to my complaint. Every ounce of correspondence with the Ombudsman’s office involved the HSE seeking more and more information.

In fact, they actually had the audacity to ask me several times to confirm my diagnosis. Now bear in mind it was they who diagnosed me, it was they that told me to get my affairs in order. I confirmed then and I can confirm now, it’s still terminal and barring divine intervention it always will be.

I was getting dizzy as a result of the run around I was getting so around early July, I decided to interact with the HSE directly. Looking back on it now, I can safely say they had no idea with whom they were dealing.

I am not just another terminally ill person with a gripe. I’m a real person with real feelings and someone who expects the same level of dignity and respect that I like to think I afford others, regardless of the circumstances. Evidentially too much to ask.

Actually, all I was asking was why my card was means-tested and not approved for the full 18 months. Regarding the means test, I was forced to submit detailed bank statements and wage slips, all whilst undergoing chemotherapy.

In addition, the information provided on the Department of Health’s own website backed me up. This information was subsequently withdrawn from the public domain - the HSE said it was incorrect and had been mistakenly posted.

How on earth are most people, at a time in their lives when they need help, supposed to deal with this amount of ducking and diving from departments of this state? The saga continued for weeks. No resolution in sight. No explanations forthcoming. After repeated attempts to keep this private, the following happened.

On the evening of July 19 last, my birthday, I gave the HSE one last chance to engage. I asked for a supervisor to call me back before close of business. I’m certain now they wish they had.

The following morning I tweeted about my woes.

Little did I know what was about to transpire. I did it more out of sheer frustration than anything else but in hindsight, I’m delighted that my call was not returned.

It became apparent within hours that the tweet was gaining a huge amount of traction. I saw this as an opportunity to speak not on my behalf, but on behalf of all those terminally ill people trying to deal with levels of bureaucracy that require intricate maps to navigate. The only problem is there’s only one copy of that map and it’s always at the other end of the phone.

Messages of support, public and private, started to flood in. To be honest I was overwhelmed at first but opportunities like this don’t come along too often.

Armed with the support of my wife and family, I decided to hit the ground running. There is an element of our public health system that is in need of a dire overhaul in terms of how it deals with the people that need it most. I intend to continue using my voice as an advocate.

I’m not just a patient advocate, I’m an advocate for change. I’m also a realist and know that one person alone, will not nor cannot, implement the necessary change. On saying that I would like to be part of the solution. I would like to help those that have the expertise and authority to implement change.

I’m not going to be around forever but whilst I am, I want to be part of this. An infamous phrase springs to mind, “I’ve started so I’ll finish”.

John Wall is a 48-year-old father of three from Quin, Co Clare, whose search for an explanation for the rescinding of his medical card has exposed confusion and inconsistency in the way the rules for the granting and retaining of medical cards are applied to people with terminal diagnoses. Health Minister Simon Harris made contact with him during the week and John is seeking a face to face meeting with the minister after the holidays.

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