Portlaoise babies: Time to value and use patients’views

Regina Doherty TD reflects on lessons from Portlaoise

Last Tuesday, at the Oireachtas Committee on Health and Children hearings, I joined my colleagues and we listened to the experiences of two families whose babies died in the Midland Regional Hospital, Portlaoise.

We owe them a great debt. They have courageously fought for many years against a system that was supposed to support them, to care about their experiences and learn from them, to ensure no other family would go through what they went through.

The recent Hiqa report into the investigation of the quality, safety and procedures in the Midland Regional Hospital, Portlaoise, demonstrates what happens when the health service fails patients.

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In this instance, not only are we seeing evidence of failure in terms of the clinical services provided, but also a deeper failing in the lack of support and answers provided to patients, a lack of a clear and consistent policy on how patients can make a complaint and ensure that they will not only be heard but that actions will follow.

The present moment holds the possibility of real change in the health service and with it, safety and quality that will restore the trust of the public. Yes, the recommendation by Hiqa to establish an independent patient advocacy service is a starting point. This agency must first be truly independent of the HSE and have a direct reporting relationship to the Minister for Health. It is essential that this agency is set up in an honest, inclusive and transparent way, so that trust can be restored for patients and the public, failure to do so will cause irreparable damage.

Ireland currently has a fragmented, poorly co-ordinated, ad hoc public health care advocacy service, one that often sees those that are advocating for change being funded by the HSE. This practice cannot continue, advocacy must be funded differently if we are to ensure that patients have an accessible and equitable advocacy service.

Ireland deserves integrated health care advocacy, a service that will bring together agencies currently representing patients and the Irish public to leverage a stronger voice, organised action, and streamlined work with government. An agency that will provide a unified voice for patients, carers, family members and the public to engage in dialogue with health services. An agency that provides a single easy access point for public concerns and complaints about the health service. An agency that will assure transparency, restore public trust and educate stakeholders to achieve safe, high quality healthcare for all.

Feedback is the best way of knowing if you are doing things well; however, in Ireland, we see feedback, and complaints specifically, as a negative. We don’t see the value or the learning that can be achieved, the way that learning from an adverse event can prevent another tragedy happening.

The last independent survey of patients’ experiences of Irish health services highlighted that nearly four in 10 patients did not feel encouraged to voice their opinion about the services they received, and over six in 10 were unaware of the complaints process in the hospital they attended. Many who wanted to make a complaint failed to do so as the system is not set up in a way that makes it easy to provide feedback.

Litigation is often the route that is forced on patients and family members, who very often just want answers, assurances it won’t happen again and somebody to take responsibility and say ‘sorry’. You shouldn’t have to go to court or to the media to get these. There are other ways that we can promote trust, ensuring that patients have clearly defined rights to services: the right to choose the hospital they attend, the right to seek a second opinion, the right to view their records.

We say that patients have these entitlements in Ireland but very often the choice of hospital attended is decided for the patient. If they seek a second opinion, they can be made to feel intimidated or viewed as an awkward patient.

Despite evidence that shows working collaboratively with patients at the point of writing a patients’ record has many benefits, patients generally only have access to their records if they make a request. We have a habit of talking the talk in Ireland but open disclosure is an example of where we don’t walk the walk. The many Hiqa reports to date are a clear indication that the HSE is not functioning for the benefit of patients or staff. It’s time for all these separate organisations to engage and eliminate insular practices, for egos to be left at home and time to put patients truly at the centre of care and not just pay lip service. This is the very least we owe the parents whose babies died on our watch.

 

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