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Dear Subscribers and Stakeholders. We hope that you are all keeping well. Welcome to this our first Irish PatientsAssociation 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 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 patientsNon-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 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


"Change and Reform in our healthcare systems should not be preceded by preventable funerals and injury to patients" Irish Patients' Association Dublin 00353876594183

IPA submission Expert Group on Nursing H
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Eibhlín Mulroe is the CEO of Cancer Trials Ireland, a not for profit organisation with a mission to bring Irish patients’ early access to the latest cancer treatments through research and to establish Ireland as a recognised centre of high quality translational and clinical research. She is formerly CEO of the Irish Platform for Patient Organisations, Science, and Industry. Eibhlín has a BSocSc Hons from Queens University Belfast and is an MBA graduate from the Smurfit Business School, University College Dublin.

International Clinical Trials Day: Highlighting Irish research on Cancer and COVID-19

At a time when scientific research has never been more critical, Cancer Trials Ireland recently shared leadership of the Irish celebration of International Clinical Trials Day by highlighting studies investigating the impact of COVID-19 on people with cancer, and also by highlighting people who had taken part in clinical trials.

Cancer treatment and screening may have been hit by COVID-19 in recent months, but people in Ireland can be absolutely certain that the cancer research sector is as committed and proactive as ever, in spite of the crisis. I want to recognise and applaud our funders – including the Health Research Board, the Irish Cancer Society – for their unwavering commitment to cancer research during the pandemic. It is a strong indicator of just how important clinical and cancer trials are for patients in Ireland.

For people with cancer in Ireland, access to trials can be the best treatment option when the standard treatments are not working. It is important that we are able to offer these options at all times despite any societal turbulence. It is critical that we are able to create an infrastructure for clinical trials that can withstand a public health emergency or any other situation that puts up additional barriers to patient participation in trials.

‘Interventional’ (i.e. new treatment) clinical trials in Ireland.

More widely, over a third (37%) of the clinical trials investigating a medicine/treatment/intervention are cancer clinical trials. Overall, there are 209 clinical trials open to recruiting new patients in Ireland, of which 78 of which are cancer clinical trials.1 People interested in learning more about cancer clinical trials should talk to their doctor, and visit the Cancer Trials Ireland website.

“I would not be alive today if it wasn’t for cancer clinical trials”.

One patient who has benefitted from taking part in a cancer clinical trial is Seamus Cotter, who works in the aviation sector in Shannon, and now sits on the Cancer Trials Ireland Patient Consultation Committee. Seamus was diagnosed with Stage IV lung cancer in May 2016. He was eligible for a cancer clinical trial, and by April 2017 his scan showed up clear – as has every scan since then. In his own words: “I would not be alive today if it wasn’t for cancer clinical trials”.

Cancer Trials Ireland & COVID-19

We are currently engaged in the following ways with respect to COVID-19:

· Studying the effects of COVID-19 on patients with cancer in Ireland in real time (COVID-IYON)

· Studying the effects of COVID-19 on people with lung cancer, as part of an international collaboration with Italy (TERAVOLT)

· Assisting the National Cancer Control Programme (NCCP) in applying for ethical approval for two COVID/Patient Registry studies

Further details on the COVID-IYON study

Cancer Trials Ireland is currently supporting on an observational study across 12 cancer care and malignant haematology care centres in Ireland to better understand the effect that COVID-19 is having on cancer patients who have contracted the virus.

The study is led by Professor Linda Coate, University Hospital Limerick and Dr. Colm MacEochagain, SpR, University Hospital Limerick. Studies like this one are critical in the developing the healthcare system’s understanding of how best to support the community of people with cancer.

References: 1

Media Release Thursday 28th May 2020 14:00 Hrs

The Irish Patients Association is calling for a full independent investigation into the reported deaths outlined in todays HSE report at residential care settings.

Of the 1,615 Deaths recorded nationally on Tuesday 26th May 2020 from COVID19. Today, a HSE report states that 1,030 deaths of these occurred at 167 residential settings which includes community hospitals, long stay units, residential institutions and nursing homes.

At the recent Special Committee on Covid-19 Response debate - Tuesday, 26 May 2020, Pheilim Quinn, the CEO of HIQA stated that “from the onset of this public health emergency, HIQA has endeavoured to make an effective contribution to the national response through our interactions with the Department of Health, the HSE, providers, residents and relatives”.

Mary Dunnion, the Chief Inspector of Social Services also gave evidence before the Special Committee. The Chief Inspector is accountable directly to the Oireachtas for the performance of her statutory duties of registering and inspecting nursing homes under Part 8 of the Health Act 2007. Mary Dunnion’ s consistent position has been that, as the independent regulator of nursing homes, the Chief Inspector performs her statutory functions of registering and inspecting nursing homes independently of HIQA, the HIQA Board and others.

The Office of the Chief inspector registers and inspects 584 nursing homes accommodating approximately 30,000 residents.

The Chief Inspector, as part of her registration and inspection functions under the Health Act, conducts interviews to establish the fitness of all persons who are registered by the Chief Inspector to be the Persons-in-Charge of all private and voluntary nursing homes. The Chief Inspector, on an ongoing basis, conducts inspections of nursing homes to assess the compliance by the persons-in-charge with ministerial regulations and HIQA Standards, including the Care & Welfare Regulations amended recently by Simon Harris, the Minister of Health on 2 October 2017.

The Persons-in-Charge of nursing homes are, as a rule, registered nurses and are statutory responsible for clinical supervision and care and welfare of residents within the nursing homes. The assessment of the fitness of Persons-in-Charge and ongoing compliance assessment is the statutory responsibility of Mary Dunnion, the Chief Inspector.

In this context, at the recent Oireachtas committee, the Chief Inspector said, “we identified premises that would be challenged in the context of managing Covid-19 outbreaks. Our findings would have been communicated to the Department of Health and the HSE. We are talking about February and March.”

Phelim Quinn, the CEO of HIQA has a seat on NPHET. Mary Dunnion, the Chief Inspector, has had no seat on NPHET, despite the unfolding tragedy in the Irish nursing home sector.

We are just emerging from the country’s first phase of COVID-19, a second phase may occur, the severity will depend on us all looking out for each other and being open to learning from the mistakes of the past and being accountable for the welfare of the elderly, vulnerable, frail and sick people in the State-regulated nursing homes up and down the county. .

The Irish Patients Association is calling for a full independent investigation into the reported deaths outlined in todays HSE report at residential care settings.

Further, the Irish Patients Association calls on the Government to establish a full investigation of the independence and effectiveness of the State’s regulation of private and voluntary nursing, with a particular focus on the role of the Chief Inspector to date in the State’s response to the national tragedy that has unfolded in nursing homes under her regulatory remit.

It is understood that the Irish nursing home regulator profiled certain nursing homes as high risk and provided a list in March 2020 to the Department of Health. It is important that all patients, residents and families understand the reasons why that list was prepared, why it was handed to the Department of Health by the independent regulator and why there was no communication with the residents or their families regarding that list at the relevant time. It will also be necessary to establish whether or not all operators whose names appear on that list were informed by the independent regulator.

It will be important to establish how many of the nursing home names appearing in today’s Irish Times, also appear on the list relayed by the regulator through HIQA to the Department of Health as list of high -risk nursing homes. Finally, it will also be necessary to establish when did Phelim Quinn, HIQA’s CEO become aware of the list, when was HIQA’s Board made aware of the list, when was the HSE Board made aware of the list and when was NPHET made aware of the list


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