Margaret is a National and International Patient Advocate, advocating for safer heath care, she is former Global Lead for World Health Organisation’s Patient for Patient safety, member Patients for Patient Safety Network Ireland.

When visiting a doctor, patients expect a listening ear, an accurate diagnosis and timely treatment. Margaret Murphy encountered the opposite – a flawed health system that lacked the capacity to respond to her 21-year-old son’s deteriorating health. “Every point of contact within the Irish medical system failed Kevin,” explains Margaret. “Simple measures were not taken and he needlessly lost his life.”

“Patient advocacy is a responsibility that has been thrust upon us by our experiences,” says Margaret. “We know we can’t change the past, but we can use the past to inform the present and influence a better future.”i

COVID 19 – Unexpected and Welcome Consequences

Published 11th May 2020

Now in the third decade of my patient safety advocacy journey it is strange to find myself considering that Covid19 is in fact contributing to the advancement of the founding principles and core values of the global advocacy movement, established in 2004 as the WHO Patients for Patient Safety Programme.

Our call from the outset has been for care that is delivered with head, with heart, with hand – that is employing intellect, compassion and skill. That call also asked for greater transparency and disclosure together with meaningful engagement and involvement in healthcare at all levels as a right for patients, families and civil society – the intention being that we would become co-producers and co-creators of safe care. Despite the best of intentions, it has been a hard slog and uphill struggle.

‘We have all been cut down to size’

But in recent times, it seems to me that the intent and aspiration is coming to fruition, now that we are assailed by a common enemy, an enemy that presses on regardless irrespective of race, creed, position or title. It is clear that we all - each and every one of us – have been cut down to size We are all equal in our vulnerability. Perhaps it is the combination of that powerful vulnerability and equality of fragility that is fuelling the significant leadership magnificent response from all in our society.

‘we now be trustworthy and deserving of being true partners in this call to action’

We can see how this is playing out. Our healthcare and political leaders have been open and honest (some would say brutally honest) with us, explaining the rationale for the escalation of the various measures to improve our chances of coming safely through this onslaught by an invisible adversary.

We deserve no less and we want no less. Those leaders keep emphasising that we are ‘in this together’ as they enlist and urge, indeed entreat, each of us to rally to the call – to do our bit in tandem with the Trojan efforts of those on the frontline who turn up every day to continue to provide healthcare at no little cost to themselves and their families. If this is not co-creation and true engagement, I don’t know what is. This is what we asked for. This is what we demanded in what were more ‘normal’ times and sometimes less receptive times. Just as we entrust ourselves and our loved ones to healthcare it is important that we now be trustworthy and deserving of being true partners in this call to action, that we observe the guidance and comply with recommendations.

The level of leadership and directness of communication has been admirable. It comes from co-ordinated sources:

(a) from all our political leaders who have demonstrated a level of gravitas and statesmanship that is both reassuring and commendable.

(b) from our healthcare leaders who are grappling with the complexities of our situation at so many levels and who, it is very clear, are not sparing themselves in planning a way forward and out of this dilemma.

For us the rallying call is one which has proven to serve us well in previous ages: UNITED WE STAND, DIVIDED WE FALL. NI NEART GO CUR LE CEILE. This is the time for us to HOLD…. HOLD…. HOLD to be gladiators in solidarity against the current threat……

Embracing that new identity of being a homebird is counter intuitive for many of us 70+ elders as is cocooning and focusing on ourselves as spectators. Positivity and finding that ray of hope is crucial and which puts me in mind of the words of the poet Arthur Clough and devoted assistant to Florence Nightingale:

Say not the struggle nought availeth,

The labour and the wounds are vain,

The enemy faints not, nor faileth,

And as things have been, they remain.

If hopes were dupes, fears may be liars;

It may be, in yon smoke concealed,

Your comrades chase e'en now the fliers,

And, but for you, possess the field.

For while the tired waves, vainly breaking

Seem here no painful inch to gain,

Far back through creeks and inlets making,

Comes silent, flooding in, the main.

And not by eastern windows only,

When daylight comes, comes in the light,

In front the sun climbs slow, how slowly,

But westward, look, the land is bright.

As we all work together in cooperation and consideration may brightness and sun soon be restored to our land and to our lives. We home birds look forward to release from our gilded cages when like golden eagles we will soar to new heights while in grateful thanks for the gift of new insights, for family and for the volunteers who have minded us so beautifully.

Rath De orainn go leir.

Margaret Murphy

Contact Details with Editor

Working from home didn’t seem too tough at the start of this pandemic. My partner and I are lucky to have jobs where we can still earn a crust from the comfort of our house.

The worst part of the lockdown was not travelling up to our border county home to see the folks. We missed them in their cocoons.

A few weeks ago, the worst happened, one of our parents had a stroke and very quickly rushed to Hospital. The last place we wanted to send a loved one during a pandemic, but a stroke is a stroke. The neighbours, the local GP, ambulance driver acted so swiftly that the treatment was administered just in time and the main man was ready to fight another day.

Information was hard to get and getting into see the patient was an absolute “no no” or at least that’s what I thought. When my other half returned from dropping clothes into his Dad, he said the nurse was really nice, she let me in to see Dad for a minute. My heart sank. Who else did the nice nurse let in, she was being kind but COVID19 ain’t so kind and less so with no Personal Protective Equipment (PPE).

“Trying to get to talk to the treating consultant was not easy”

The worrying started. Once the stroke was treated all we wanted to do was get Dad home. Ringing the ward and trying to get to talk to the treating consultant was not easy. When we did get to talk to a Health Care Worker HCW we were told there was a queue for the final scan needed before he could be discharged. This narrative went on for 4 days – eventually after a heated discussion with one HCW we got some answers.

Asking about whether there was equality for all patients and if stroke patients were being deprioritised - we were told there were actually no staff available to do the scan due to them being in isolation – fair enough.

Why didn’t we hear that from the get go. I just can understand why they can’t just be straight ? patients and families can handle the truth, it’s a pandemic, it’s no one’s fault but we have to be honest.

“What we can’t handle is not having information”

What we can’t handle is not having all the information. No one, including that HCW wanted our Dad in the hospital one minute longer because of the risk of COVID19. We worried about the risk of not having that final scan but after a good “chat” we all agreed it was time to go home.

“So you know doctor that the patient you are discharging could have COVID19 now?

Do you know that he cares for and lives with someone in her late 70s?”

“Eh no? “

“So, are we isolating him at home?”

“Well there’s no symptoms so we can’t test?”

“Literally ran away”

Fast forward to later that day, elderly Dad brought to the door of the hospital by a nurse and his overnight bag was handed to his son – then she ran away, literally ran away, No isolation advice and no chat about the risks of COVID19.

Is it her fault? Is it the Doctors fault? No, they are doing their very best and operating to the processes and procedures in place. They are putting themselves at risk and that is admirable.

“Who writes the procedures?”

My question is, who writes the procedures? Why wasn’t there a policy of testing patients who have been exposed to HCWs with COVID19? I am sure if the policy existed the HCWs would have executed the test and relevant advice on isolation.

My elderly Dad was in the care of his son for a week after leaving the hospital, did he isolate – no. Why?

“The kids might have insisted on it but sure the doctor didn’t say it was necessary.” he could be heard thinking!

“Right so Da, will you get a test then just to be safe?”

“Alright son”

“Mammy collapses”

3 days later the test is positive, 3 days later again, Mammy collapses and spends 2 weeks in hospital with COVID19. The adult “kids” have symptoms – son tests positive.

“Media blaming the nordies”

Stories abound about the high numbers of COVID19 on the border and media blaming the nordies. I am no expert, but it doesn’t take a genius to work out that if we are discharging patients into the community without isolating them or testing them then your local hospital has a large part to play in the high numbers contacting the virus.

“What about the old people with no annoying relatives to stand up for them?”

I hope this story helps others. We need better guidelines for hospitals when discharging all patients. We also need to think about the loneliness of patients in hospital tonight. They can’t see their families; their families can’t see them and most importantly no one can have a face to face with the treating team.

We had an awful experience with one HCW but to be very fair to the hospital after raising the issue they apologised. Information has been so much more forthcoming since then – but what about the old people with no annoying relatives to stand up for them?

Our Taoiseach asked us to cherish the elderly – processes in the HSE need to reflect that sentiment.

The Irish Patients Association calls on the Minister for Health and all political Parties to urgently address the building surge of patients in need of care that is not Covid19 related.

It needs a similar group such as NPHET  – Too many lives are at risk, Too many Patients suffering, too many anxious if they will get timely access to safe care.

Since mid-April we have quantified and highlighted the ever-increasing fall in attendances and admissions at our emergency departments vs the same period last year.

One doesn’t have to be a medical expert to read that this massive build-up of unmet need is a cause of serious patient and public health concern.

The HSE signed a major contract to buy in capacity from the private sector. A massive cost of €115 million per month for 3 months. We understand that this equates to almost 9 years of NTPF funding, specifically for private hospitals use for public patients.

Our Private sector sources advise, if the Private system was given €100 million, in a year our waiting lists would be almost zero.

While the deal was signed off on March 30th 2020, initially it was a contingency capacity  for covid19 surge which thankfully hasn’t happened. 

On May 1st the HSE announced that it was planning to maximise this resource in the interests of non-Covid 19 Patients. eg elective and outpatient waiting lists etc. .

While we welcome this development, we have concerns about its oversight.

With only 8 weeks left in the €316 million deal. A huge opportunity to flatten the curve for non covid19 public demand presents itself. At the same time to integrate care for private patients also in need of care.

Among our main concerns; there is no clear published guideline as to how clinical priorities are being set for the most urgent elective care or outpatient appointments, while left to local hospitals to link into the private sector how does we ensure consistency in their use of the private sector? Over sight of the delivery from this historic investment, must have meaningful multi-stakeholder involvement. 

We understand that the HSE has a committee overseeing this utilisation of  the private capacity however  it is ‘bizarre’ that no private hospital representatives are in this group, nor consultant representatives, nor patient interests.

We must work together as ‘equal’ stakeholders,  to deliver needed care; that for many, in so many ways , can't wait !