Being empowered, Patient journey

Why the PATIENT needs to be treated as an EQUAL in our healthcare systems…

We’ve all been there at some point, been in that parent child type scenario with a fellow adult, where the other is leaving us in no doubt that they are the expert and we, the floundering, less important of the two.

Alas our healthcare systems can be rife with this type of relationship, the doctor portrayed as the expert, while the patient is seen as the lesser one in the relationship. That is not to cast aspersions on all doctors, or on all doctor patient relationships, but let’s just say I know a lot of patients, being part of the big cardiac fraternity that I am, and yes, I have heard the story over and over, how the doctor was the boss, sometimes a scolding, sometimes non communicative boss, sometimes devoid of the patience, understanding, willingness to listen, or time that the patient needed, sometimes spending the whole consultation making pronouncements, or some might say, giving orders, and making decisions on the life of that other person in the room, without looking up from writing his/her notes throughout the process.

I have known patients who were ‘afraid’ of going to their doctor, who were ‘dreading it’ when it came to their next appointment. I have met patients who felt dismissed in their consultations, patronized for the worries they have expressed, at sea as regards the questions they have asked, and who have left their consultations with more confusion than clarity, despite the €160 consult fee they have just paid for the precious ten minutes they were given with their consultant.

But it’s not just in consultations or medical wards that this experience of the patient feeling ‘lesser’ can occur. It can happen in any healthcare setting.

I have had first-hand experience as a patient and Patient Advocate of dealing with healthcare institutions where no one thought the patient needed to know, be informed, or consulted on an issue that affected them, even where the patient has been forgotten entirely! The campaign earlier this year for vaccine prioritisation for heart failure patients under 70, being one such example of this, where some of our healthcare professionals dealing with, or on behalf of patients needing very high risk vaccine prioritisation, seemed to forget/overlook/fail to lobby for, the over 7,000 of us under 70’s in Ireland with heart failure, a condition which merited very high risk vaccine prioritisation status according to multiple International health bodies, so we never made it onto the very high risk vaccine prioritisation list.

Even when these various organisations and health professionals were reminded that we did exist, through the expert letter and report writing of my fellow highly talented and skilled heart failure patient advocates, they rarely, or never, responded to our patient group, or, ignored any requests we made for meetings, basically treating us patients, like we were not there.

There are lots of different job titles for those who are employed to be ‘the experts’ at representing patients in lots of these bodies, healthcare organisations and even in the private sector, most of whom receive great salaries for these roles, benefits packages and career progression opportunities. I am not saying that all these people are not capable at doing the job, far from it, some are terrific, but I am saying that rarely if ever are people in these positions’ actual patients. Meanwhile the patients themselves who live and breathe the patient issues, remain peripheral figures, outside the organisations, the boardrooms, the decision-making, because it seems as though a funny thought to those within the organisations, that patients might be actually hired (I have had zoom meetings where ‘the experts’ laughed when I suggested it), even if the patient does know what they are talking about, and perhaps more than most when it comes to the patient issues!

Instead occasionally the patient is hauled into a side room to meet some directive on the ‘patient voice’ being listened to, (that the EU or some other government body says they must have from now on), but the patient is most definitely waved goodbye, perhaps after tea and a sandwich at most, before the big meeting takes place amongst the experts of healthcare (the salaried ones rather than sandwiched ones… or maybe they get sandwiches too) because no one thinks it’s important enough to have the patient in the meeting to discuss the issues that effect every breath they take, when instead you could have other people talking for them called ‘the experts’.

I would argue that when patients are treated like this, it’s not just unpleasant, it is deeply disrespectful, degrading and discriminatory. While the patient might not have the expert medical knowledge, or expert medical experience, the exact lobbying techniques, or lobbying experience, they do have the expert patient knowledge and expert patient experience and that is an equally unique and valuable position of expertise, in any discussion on healthcare.

Also in todays modern world, patients (who are people who happen to have a diagnosis) are a fairly skilled species, who can bring these skills to the table to advance the cause of their fellow patients and those skills could be anything from report writing, to public speaking, research, to policy formation), so no one is suggesting that we hire an unskilled workforce here, just the opposite in fact, that they would be both professionally and personally skilled, where the latter patient experience would allow them to identify key patient issues, represent these issues, even provide creative solutions to the issues with an ownership, authenticity, respect and effectiveness that can offer their fellow patients a sense of empowerment, acknowledgement and validation, not available through any non-patient, patient expert.

But the patient is not invited into organisations to do any of this. Instead, they are consigned only to ‘volunteer’ status, offered a cup of tea instead of a salary, a commendation instead of a benefits package, an escort to the door of the building before the big board meeting, instead of a seat at the table.

100 years ago, women were in a very similar position to the patients of today. Tired of living in a system where decisions were made ‘for them’ without having them in the room, of being seen as of lesser significance on issues relevant to them than the official ‘experts’ in their society, of working for less, or no money, compared to their menfolk, they rose up and demanded equality, recognition and a right to have their say, in the form of the suffrage movement. I believe the patient status in our healthcare settings mirrors that situation now.

It is time for the patient voice to be included in our healthcare systems not in some ad hoc, wishy washy way, but in a professional context so that we can run better healthcare for the end user, its chief stakeholders, the patients!

It is time for the patient to be ‘in the room’, to be sought to work within these patient organisations and bodies and institutions and in the private sector, rather than remain peripheral to them, to work not as ‘volunteers’ but as valued team members, on equal terms, who can work alongside the policy makers and patient advocacy teams, lobbying the healthcare sector for better treatment and decisions for the patients, who can identify areas of support needed, and insight into effective communications from these bodies to patient groups, who can be given seats in the board rooms and decision making meetings, to represent their fellow patients like no one else can in these settings. Patients would not be replacing anyone already there, but instead strengthening the team that is.

Our healthcare systems will not be of lesser quality by letting patients into those institutions or consult rooms, as equals. Far from it. Instead, we will enter a new age in healthcare where patients will be part of the healthcare solutions, rather than being disenfranchised and left on the periphery of a system that is so obviously not working.

Like the women suffrage movement appreciated the support of many men in parliament and society to advance their case, patients too would appreciate the support of all in healthcare and healthcare organisations to back their call for equality, in our healthcare systems, be it at organisation level or in a consult room, but should they not get it, I don’t believe they will be deterred. We live in new times, the information age, with new ways of communicating, new ways of stating the case, new ways of reaching the audience, of lobbying to get support for good causes. I believe patient equality is one of those good causes.

We are over the platitudes and the cups of tea and sandwiches (although they are nice, and we have appreciated them) and we are over too being talked to like we are children. It’s time we were treated like the competent, capable, valuable, skilled adults that we patients actually are, and for us to take our seats with the other adults, as equals, at the healthcare table.

Le grà

Pauline O’Shea

© Pauline O’Shea

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Photo by RODNAE Productions from Pexels thank you Rodnae Productions!

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