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Guest contributor, Mrs Margaret Murphy

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

Border tales of COVID19By Anonymous

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.

Non Covid19 Patients and Service Users (IPA STATEMENT)

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 !

The Day before Irelands First COVI-19s’ Case #0001

Going into the COVID19 Pandemic, our Health Care system was ‘fragile’ even to meet expected demand in 2020. On the day before the Republic of Ireland’s first case of COVID-19 was declared, on February 28th 2020 it was the 104th day of the IPA’s monitoring of the 2019/2020 winter period vs the previous year. The source data we analysed from the Irish Nurse Midwives Organisations’ Trolly Watch. So, on Feb 27th we had 73 days with more than 500 patients on trolleys and wards vs 28 in the previous winter. Serious and sustained overcrowding had the knock impact on patient safety. It was, and still is an undeclared national emergency that has now been massively overshadowed by COVID-19. This winter’s surge was planned for in the HSE budget, and demand was not much dissimilar to the previous winter. The HSE tried to control this surge with various escalation protocols to meet the demand; such as cancellation of elective surgeries, improving home care packages and the addition of 200 extra beds up to Match 2020. Ireland has a very unfair two-tier health care system nowhere is this more evident than the huge waiting lists that have existed for many years despite so many political promises to the public in the mist of so many vested interests. On the day before our first COVID19 case was recorded, our public waiting lists as per National Treatment Purchase Fund (NTPF) for February 2020 were. Inpatient Elective waiting lists eg Hip Replacements Total 0-3 Mths 3-6 Mths 6-9 Mths 9-12 Mths 12-15 Mths 15-18 Mths 18+Mths 66,705 27,709 16,119 7,901 5,301 2,934 1,959 4,782 Outpatient Appointment awaiting first Consultant led Appointment Total 0-3 Mths 3-6 Mths 6-9 Mths. 9-12 Mths 12-15 Mths 15-18 Mths 18+Mths 558,554 158,173 100,174 70,468 56,537 36,944 30,358 105,900 International comment noted, that even if we met the Governments target time of treatment within 15 months we would still be the worst in Europe. In addition to those waiting for access to treatment there are also many people with disabilities who often may need care from family, partners or health system. The 2016 Census tells us that there were 311,580 Males with a disability and 331,551 Women. Other vulnerable groups such as Asthma, Diabetes add a further 470,000 and 250,000 respectfully. In addition to this patient groups there are some 250,000 suffering from Depression not including other mental health illnesses. To deal with this significant demand, red flags were raised about falling numbers of family doctors, consultants and nursing shortages. This was the demand, and will continue to be during our handling of the COVID19 pandemic. OPINION Patient’s and Health care service users, need a new Government to be formed. One that is built on transparency, solidarity and where the ask is ‘what can you do for your country’. Ethically we need to decide, that vested interests in all their guises can no longer command a disproportionate influence on consumption and use of resources, which will ultimately impact on fellow citizens. In Healthcare delivery, The fragile domain of Trust must be protected, built on Performance and Accountability not PR and spin.

Queries for Community Care & Acute Care

CV19-0320-2 Queries for Community Care and Acute Care Continuity of Business as Usual in the Community While most attention has been placed on Acute services, ICU beds, clearing beds, extension of cancellations of outpatient appointment’s, and elective surgeries. The World Health Organisation have stated that now we need more nursing home services in the community and at home testing kits. We need to enhance service provision extend role of pharmacy and community IV in the community to treat patients in their home or residence. It was established Monday 9th March that the National Emergency Plan for Managing Epidemic’s has not been updated since 2007 and is currently being updated. The following are concerns that have been raised with us by members of the public and experienced professionals. What enhanced supports have we put in place to stop all patients being transferred to Hospital. This refers to the most vulnerable eg Residents in Nursing Homes, and those requiring care at home. What enhanced supports are being put in place to keep patients away from congregation? example: in nursing homes and pharmacies’ in the community. Have we developed a home testing kit for patients? Have we a plan to collect same? How are pharmacies being used to protect patients in the community? Will we develop a triage app that will allow pharmacies to triage and dispense medication service and testing? This is urgent as the GPs will be under enormous workload in the coming week Elderly patients are still being transferred to hospital for treatment they should be getting in Nursing Homes such as IVs and minor falls. What steps are being put in place to avoid transfers for our most vulnerable? Reports are coming in that families are very worried about what will happen to their loved ones if they get sick. Principle: Patients come first and should not be used as a pawn by any party in dealing with this historic challenge to our society. Flexibility among and within professions will be needed to share the burden among the frontline in acute and community settings. Some models of the impact of Coronavirus as high as 60% of population with 5% being critical and up to 3% total mortality, Our Acute system cannot cope with this demand in addition to normal demand, this is why treatment in the community is a HIGH PRIORITY now. We have unconfirmed reports that St James Hospital has an emergency pop-up tent hospital that they have not been able to erect due to the space being occupied reserved for the children’s hospital development. Is this true? if so, where will this tent be erected ? and with it, the same services as previously planned for?

CONTACT

Irish Patients’ Association,

Email: info@irishpatients.ie

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