Dear Subscribers and Stakeholders. We hope that you are all keeping well. Welcome to this our first Irish Patients’ Association Briefing Note, it’s a little long, being our first one! Call for independent inquiry into deaths of nursing home residents. So many lives have been lost, and many who mourn such loss, do so in solitude, with heavy hearts. Many have unanswered questions. One grouping of people who died, were elderly residents in residential settings. We believe that there is a need for an independent inquiry to establish why such mortality occurred. Read our submission to the Expert Committee on Nursing Homes established by Minister Harris on the recommendation of National Public Health Emergency Team (NPHET). [See attached Files] We need a government. As I write, so long after the General Election, like so many others, we anxiously await the outcome of the deliberations of the various political party members. Will they support the current program for government and form a political ‘Celtic Troika’? Or will they not? Political leadership is urgently needed to steer us through this tempest; of a global pandemic, environmental and economic systems, and a stressed public health care system, the likes of which are beyond living memory. A Challenging time for Patients While a lot of public recognition, which is rightly deserved, has been given to front line workers everywhere, the past 3 months has also been a hugely challenging time, especially for; Patients, their families, and those close to them. While small in number, the most assertive people contacting us to protest, about the organisation of our health care system, were private patients in their mid-20’s to early 30’s who experienced long delays for COVID19 tests and results. There was further concern by other groups of patients who experienced difficulties in accessing their consultant’s, when they became albeit temporarily ‘one’ with the public health care system. As these private patients begin to return to their domain of timely access to care, they can now emphasise and understand, that the wait experienced by public patients “is not a happy or indeed a safe one” they will be very cautious in accepting a single point of access to a public health care system if this does not improve. Having experienced in some small part the lot of the public patient, public patients may now have the support of private patients for urgent reform. ‘We are all in this together', not just combating COVID19 but also combating Health Inequalities, Echoing Patients' Voices The most heart-breaking experiences are those we heard of, regarding elderly loved ones in their 80’s 90’s. Alone in hospitals or discharged to their homes with little or no support. One account yet to be investigated “I could see my mother (89) standing in a corridor and I asked the nurse to look after her and get a chair for her, she was rude and dismissive and told me “to leave and if I wasn't happy I could take my mother with me.” another writes of an elderly parent, the patient is “quite deaf and doesn’t have a mobile phone so we have no way of communicating with him. We have phoned the ward but are being provided with very little information” and another tells us about an elderly parent “Discharge day was yesterday the doctor phoned me putting me under pressure 8 mins trying to get me to discharge him from their care. I refused to agree on the grounds that his limbs were extremely swollen. He can hardly walk, he is so weak…” yet another writes “So you know doctor that the patient you are discharging could have COVID19 now? 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” read more about this experience https://www.irishpatients.ie/post/border-tales-of-covid19by-anonymous At time of writing this Brief, another family share their experience of a 90-year-old parent, terminally ill, allegedly being denied a visit by a family member, despite meeting HSE visiting criteria, Lack of Engagement Our experience of engagement with the HSE and others during the first phase of covid19 has at best been muted, the HSE did not contact us to ask what we were hearing from patients family’s in various health care settings – if there was such a commitment to patient advocacy in the past why was there such a lack of engagement at a time of national emergency? While the IPA is non-political, we do acknowledge engagement by Fianna Fail and Sinn Fein, Health Spokespeople and advisors during the past 3 months. “Change and reform in our healthcare systems must not be preceded by preventable funerals and injury to patients” Non-Covid19 care The day after COVID19 will be the same, if not worse than the day before COVID19 for Public Patients on waiting lists or those attending emergency departments, COVID19 had no part in contributing to that legacy. At end of May 2020 Patients Waiting for their First Consultant Led Appointment. Total Numbered 575,863 with 12mths + 207,970 Patients Waiting Inpatient Surgeries 86,946 with 12mths + 13,500 Read https://www.irishpatients.ie/post/the-day-before-irelands-first-covi-19s-case-0001 The European Alliance to Personalised Medicine (EAPM) earlier this week highlighted a new cohort of patients.“While the wave of COVID-19 patients is heading downwards in many major cities, another surge is ongoing and looks set to have a considerable impact going forward. It turns out that a substantial number of [Covid19] survivors are suffering serious medical problems post-treatment. Obviously, that will further stretch the resources of hospitals, rehabilitation centres and other medical providers as, over the coming weeks and months, we’ll be learning a lot about the quality of survival, from the thick end of it.” BED’s At the COVID19 multi stakeholder meeting held by the Department of Health 6th March we referred to the huge overcrowding in our Eds this winter vs 2018/19 winter. At that time there were 200 beds scheduled to be taken out of system at the End March, the response by the DOH, was that the 200 beds will be kept on stream till end of June and beyond if needed Yesterday June 23rd, we were informed that 3 hospitals, St Vincent's in Dublin, Cavan and Mullingar had no vacant general beds or critical care beds free. We would say there definitely needed. Emergency Committee needed for Non COvid19 care We need a National Public Health Emergency Team (NPHET) type committee to deal with the massive unmet need of noncovid19 patients which in itself is now a public health emergency. This must be one of the first actions of the New Government when it is formed, and the patient's voice must be at that table. Finally, we welcome your feedback or suggestions. If you want to unsubscribe from these communication’s/ briefings please reply with Unsubscribe in the subject linE. It is only by working in a mutually respectful partnership among all stakeholders, will present and future patients, finally, be at the centre of all decision making. Slainte Stephen McMahon PSCA (OTC) Director
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"Change and Reform in our healthcare systems should not be preceded by preventable funerals and injury to patients" www.irishpatients.ie Irish Patients' Association Dublin 00353876594183
