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Sometimes I wish I was Ignorant.

Sometimes I wish I was ignorant. Sometimes I wish I didn’t know, all I know.

Sometimes I wish I didn’t have a thing called “gut instinct”.

A few months ago, my little baby daughter, Madison, was diagnosed with the same congenital heart defect as her 11 year old sister, Mackensie. Then, only a few weeks ago, Madison was also diagnosed with infantile scoliosis, amongst many other things.

Out of kindness (and probably not knowing what else to say) many people say to me “at least you’ll know what lays ahead.”

But that’s the thing.

I don’t want to know what lays ahead. I don’t want to remember the trauma.

I don’t want to remember the times when Mackensie was being tube fed; the stress when giving her serious medications – which if missed could cause a stroke; having her baptised in hospital; being told by the surgeon that she could potentially die in her heart surgery. After her surgery, watching her in ICU with tubes attached to nearly every part of her tiny body. Little cotton handcuffs to stop her pulling out the very tube helping her to breathe. Bringing her home, terrified that I would do something wrong. Trying to clean her surgical scar without hurting her.

I don’t want to remember my constant questioning of health professionals; the fighting to push her through the waiting list for surgery. I don’t want to remember the gut wrenching guilt I always felt for not being there for my other girls when we were in Crumlin.

Every now and then, of course, these memories would jump into my mind, but I learned how to turn them off.

But now, with Madison, all I can think of is these memories.

I’ve already started doing the things I did then.

Like, worrying. Constantly.

I know she will need heart surgery, I just don’t know when. I know the signs of advanced heart failure. Poor feeding, poor weight gain, wet cough, shallow breathing, sweating while feeding and cyanosis around the lips. Madison has all of these symptoms. But these too can be signs of reflux – which she has too. So I try my best not to jump to the worst scenarios, but it is so, so hard not to. This doesn’t even touch on the topic of scoliosis, which I’m sure everyone in Ireland saw the documentary on last year. All sorts of fears come to mind when I think of that.

I’m scared.

There, I said it. As honest as I can put it. I am absolutely petrified.

This is why I sometimes wish I was ignorant.

Maybe I wouldn’t be so worried. Maybe I would trust health professionals opinions. Maybe I would just “get on with it” – as I have been told to do. Maybe I would be one of those moms who just takes everything in their stride and has faith that it will all be okay.

Maybe, maybe, maybe.

But when I look at the flip side of our situation I also think, if I were ignorant would I have missed the signs? The symptoms that alerted me that something was wrong? If I hadn’t fought the fight, would she still be here today?

What if I doubted my gut instinct? Being a parent is a huge responsibility – keeping another life (and in our house four lives!) simply alive. That’s what scares me the most. What if a doctor doesn’t listen to me – maybe thinks I’m neurotic and then tells me everything is okay – when it’s not.

I’ve been there. Nearly losing Mackensie in the process.

I suppose I’m writing this blog with one simple goal in mind.

I simply want health professionals  to understand that we parents, are not doctors. We often can’t tell the difference between a viral or bacterial infection. We see a skin rash and immediately think the worse. We have a huge responsibility for our little children. We love them so much we would hate to see anything happen to them. We get scared. We panic sometimes. We may seem neurotic.

But isn’t it a good thing that we care for children so much? Or would it be better if we were actually ignorant?

A tiny bit of empathy, kindness and reassurance can go a long way. As can speaking in clear language.

This was shown to me when Madison had a serious adverse reactions to her baby vaccinations a few weeks ago  – landing her in the resuscitation room in A&E.  The consultant came in, saw my tear stained face and wide eyes and she simply paused. She spoke softly and slowly. Explained what was happening – and what could potentially happen. Did not dismiss any small questions I had. Answered the serious questions I had honestly.

She smiled at Madison. Said she was cute. This doctor made me feel safe. It made me feel Madison was safe.

She didn’t have to perform any procedure or give medicine to create this feeling. She simply used her ability to communicate and understand. And that was what I needed right then. I needed somebody to take away the fear.

My four children all have complex conditions and we have a number of doctors who treat us that way on a regular basis, mainly, our GP and our complex care paediatrician in Mayo University Hospital who oversees everything.

They don’t make me feel like I’m neurotic. When I trust the care they give, momentarily I allow myself to feel ignorant – feel that I can hand it over and they will fight for me, fight for my children.

And it is on those days that I am glad that I know all I know, and I never wish that I ever be ignorant again.

Published by Olive O’Connor, CEO MediStori

Thank you so much for visiting the MediStori website.

As a social entrepreneur and mentor to many, I write from my heart and my soul as it helps me learn and grow as a person. I aim to change perceptions in society and I hope it has helped you too in some way. I also aim to help people better manage their healthcare through our family health organiser, MediStori.

To learn more click here

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National Patient Forum 2015

At 7.30am last Tuesday, I found myself talking aloud in my car, en route to Dublin, practicing for a presentation that I would be delivering at the National Patient and Service User Forum that same morning. Looking back,  I was really getting into it and I quite animatedly corrected myself when I went off track by shaking my head and frowning– I’m sure if anyone saw me, they surely had an early morning laugh on my behalf!

Anyway, it was just as I said the words “collaboration is key” that my GPS decided to gently interrupt my thoughts to let me know that I was coming off the motorway unto a national road. I suddenly realised where I was and was surprised because I didn’t recall the two hour journey I had just made, being so caught up in my thoughts about the oncoming day’s events.

Now I realise this isn’t just me that goes on autopilot when behind the wheel– so many of us on a daily basis put the key in the ignition and off we go – allowing one part of our brains to change gears, indicate, look in mirrors, check on the kids in the backseat, chat to the passenger beside us, merge across three lane motorways – while the other part of our brain is thinking about what we’ll have for dinner that night.

But every day, regardless of whether we’re “in the moment” or not, we have to rely heavily on collaboration to get to our destination safely.  If you ever drive along a busy dual carriageway it can be fascinating to watch cars move in and out between the lanes and synergise with one another, as if each knows what the other is doing.

Added to this, more often than not, we presume that everyone will always abide by the rules.

Red lights, stop.

Bus lanes are for buses.

No mobile phones.

Stick to speed limits.

Now some of us stick by the rules, and some do not. We can question why and how some of these rules came into play in the first instance and can often forget the collaboration that is required to ensure millions of road-users can use the road at the same time…safely. Because we actually don’t know the next move of the driver in front of us, a proactive approach is required (like the seat-belt for instance), and many’s a time this comes about because of a reaction to a negative incident.  

We need engineers for planning and to ensure our traffic lights are working smoothly; we need mechanics to ensure our cars are roadworthy; we need our council for sign and road markings; we need our Gardaí for governance; we need provisions made for accessible communications and we need educational campaigns to increase awareness. 

Collaboration is the key to getting to our destinations safely – and all of these same structures, teams and approaches are required for a safer health care service too. It can be extremely difficult to understand and manoeuvre between all of the different services and teams but one thing is for sure –  we all need to take responsibility for ourselves and for every other road user too – always remembering to expect the unexpected.  

So how do we keep on improving on services while preventing possible accidents along the way? And when accidents do happen, is it good enough to just put a “Danger Accident Black Spot” sign up and not actually change the structure of the road? 

It’s simple – we need listen to what every stakeholder needs. We need to learn from the negatives and the positives – and then improve on the quality of services based on these needs.

So this is what the HSE’s Quality Improvement Division are aiming to do. One of the priority focus areas of this division for 2015 is person centered care and they want to ensure that the voice of patients, their advocates and representatives are heard, and are central to how they design and deliver their services.

Now with this being the first meeting of the Forum, I was quite fascinated to see so many diverse groups willing to give up their time and work together on behalf of their users, to help improve services. I felt it was good too, to have this first initial meeting to give everyone a chance to meet one another and to discuss what expectations the organisations themselves had of the Forum. The Quality Improvement Division’s hope going forward is that organisations can discuss and provide feedback on a range of issues of national significance that have an impact on the experience of patients and service users accessing our health services, and then this feedback, can be communicated to the relevant HSE divisions and clinical care programmes.

To open the day, the National Director of Quality Improvement, Dr Philip Crowley started talking about the importance of kindness in our health care services.  Yes, he said, there were many, many things that needed changing and the past few years of austerity had had its toll on health services across the country but that each and every one of us can still play our part by showing just a little bit of kindness to one another. 

I sat there listening, meaning to take notes because I wanted to remember everything that was being said, but I stopped what I was doing because this is exactly what I think person centered care is all about.

Remember those rules on the road from earlier that we should all abide to? Now what would be the harm, if we just added a bit of kindness to them?

I know I am always grateful when the tractor pulls in to let myself and other drivers by. Or when a car flashes to allow me to cross the road safely. Or when someone offers to fill my tank at the petrol station. Or when the truck driver allows me to pull out of a busy parking space.

Kindness always restores my faith in humanity – and simply makes me feel better.

If we were to combine this simple approach with the right structures, teams and collaboration, in our health services, I really feel we could be on to something.

And this is what the Forum was made for. During the meeting we all broke into groups to discuss the expectations from the representatives and service users from the various organisations about the Forum and even though each table had different ways on how they approached the discussion, every one of them still had many of the same visions and hopes. This outbreak session was then followed by Public Health Doctor, Dr.Carmel Mullaney and I both showcasing separately, the different self-management projects that we are working on – thus showing how we can ourselves both work together in the ideal “patient plus professional partnership”.

After an interesting morning of discussions, Director of Advocacy, Greg Price, then closed the session and thanked everybody who attended, including his team in the Quality Improvement Division for their support.

At this moment, I looked around and realised that if everyone could really pull together on this one and truly collaborate then they would be showing our whole health service a level of kindness that could be truly outstanding.  

Yes, everyone has their own or their organisations unique health issues to advocate for, but the reality is, no matter what type of patient you are, a lot of the time, the same issues come up, again and again – for each and every one of us.

And so as I always say–

We’re all here to either get better or to help someone get better…

Collaboration is Key.

(And kindness is an added bonus!) 


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Doing it With Us, Not For Us…

“Taking account of the perspectives of patients and their families is crucial to articulating the reality and identifying the gaps between patient safety measures possible and the levels of safety being experienced by patients.”

Building a Culture of Patient Safety, July 2008

Staff Guide to Patient and Public Participation, Cork University Hospital

In the last two and a half years, I have attended many health conferences – coming face to face with some of the most innovative people & solutions in health care and more often than not, finding myself wanting to tell every patient in the country about how much ”good stuff” actually goes on in our health services! On one occasion, I actually couldn’t hold back this same excitement and without thinking, I took the microphone and addressed a 500+ room full of health care professionals at the National Patient Conference to tell them how motivated I was about their work and how I wished the media shared these positive stories with patients across the country, instead of just the negative ones.

Obviously I don’t make a habit of doing this (as afterwards I was shaking with exhilaration) but I still get the same feelings when I am invited to sit in on new initiatives to give my view as a patient. A lot of the time sharing is not always in the projects best interest until later stages and so I have to sit tight…excited at the prospect of when patients would learn of them.

So you can imagine my delight when I was given the go ahead to share not just one, but two innovative patient safety initiatives happening in national hospitals across the regions. The first initiative was the launch at Tallaght Hospital of their Zero Harm Medication Initiative and which I felt very privileged to be able to talk at and then write about afterwards, which you can read here:

The second was when I got the news that I could also share what I learned from attending Cork University Hospital’s launch of the 2015 – 2018 “Doing it With Us, Not For Us” Strategy. Now I’m sure you think, sure the name of it says it all (and it does!) but I always think it’s good to put it into perspective as to how we, as patients, tend to actually practise this strategy already in our everyday lives, just in a different way.

Take myself for example. If you know me personally, you will know that my day to day opinions can vary vastly depending on the health professional or service myself or my children are using. Very often, I will share my experiences through phone calls to friends or family or through my selected charities “Private Patient Forums” to see if others in similar situations have experienced same. When I’ve had a particularly positive experience, I will endlessly promote the health care professional, the service or even the resource to anyone who I feel could benefit from it. But I’ve also recognised that when my reaction is the complete opposite – I tend to demote in the exact same manner – and all without even realising the impact my perspective of my personal experiences can have on others actions or reactions going forward.

So why are we having these conversations with everyone but our health care professional?

Why do we feel we can’t tell them how we’re feeling?

And how can change ever be implemented unless health care professionals know what the problems are? Upheavals

Some people have a preconception that “strategies” take a long time to roll out and that they need a whole cohort of people to make it work. But why should they? Any plan can be implemented straight away – it simply starts with one person just having a conversation with another. There is learning from every single conversation that is had between health professionals and patients. Just like when you pick up a phone and share how your day went with a family member, or when you update your status on a patient forum.

A patient’s opinion can shape others actions and decisions going forward.

The conversation needs to happen between all involved in a patients care and this is what the strategy aims to do – to have patients and health care professionals talk openly and honestly with one another about their care, their situations, and their fears. This strategy is being intended for the best interest of the patient, right now, not just the “future” of our health services. Identifying that this strategy aims to change the relationship and behaviours of both patient and professional, there will be a stage of evolution and revolution at times and the Staff Guidelines for Public and Patient Participation is an excellent resource for staff which provides practical means and toolkits to help them implement this strategy, in line with the work they already do, with the hope that engagement with patients can happen naturally, without force.

And so as I sat in the state of the art auditorium after reading through the guidelines, I though how excellent it was to have an auditorium for staff training in a public hospital. When I asked about how it got there I was informed it was designed in the mid 60’s and build in the 70’s and this got me thinking. Someone, some time ago, knew how importantly it was to always be thinking about the future. To be upskilling, training and re-educated if needed. And they valued this so much, that funds and time were put into its design. This proactive approach is exactly what is being done with the strategy and is being led by the same type of forward thinkers. Thankfully the Strategy has a strong leadership team and each of them represented their views and thoughts at the launch through –

Mr J.A. McNamara – CEO CUH Hospital Group

Ms. Celia Cronin – Clinical Governance Manager  CUH

Ms. Margaret Murphy, Patient Advocacy, External Lead Advisor WHO, PFPS

Mr Liam Woods – National Director Acute Hospitals – HSE

Mr Gerry O Dwyer – Group CEO South West Hospital Group

Ms June Boulger – National Lead for Patient and Public Participations Acute Hospital HSE

Each and every one of the speakers and health professionals in the room know the challenges they may be faced with along the way.

But if we don’t try we’ll never know.

We all have to work together, as patients and health professionals to make our lives the best they can be. Collaboration is key.

Because we all either want to get better, or to help someone get better.

Let’s all “Do it With Us, Not For Us”


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Our Health Service – Bad or Good?

Is our health service just so bad, that no-one ever gets better…?

Do you know someone who survived cancer?

Did you ever have an infection cleared up by an antibiotic?

Or maybe you had a lot of pain and the right treatment alleviated it?

If you answer yes to any of these, or similar stories, then I am delighted to hear this. You see, I have come to realise, that we as a nation, could be led to believe, that our health service is just so bad that no-one ever gets better. But thankfully (and factually at that) every year, a much higher percentage of people who use our health service do get better, than people who do not.

As both a patient and a carer myself, I have had many different experiences, at different stages, and in different settings, with our health service. (Please note, I did not say “bad” experiences. Nor did I say “good”. I have had both.)

Now, personally, I do feel it can be a good thing that the general public are made aware of incidences that could have been prevented. It can definitely be a very effective way of reducing the chances of it happening again by those involved – and it can also hopefully put others in the same field on red alert. So, the media, I suppose, could be classed as another “watchdog” of sorts nowadays, because they have commendably [and sadly] at times, been able to provide substantial evidence of wrong doings in our health service, as seen very recently in the Áras Attracta Facility in Co. Mayo.

This story in particular, really got to me.

We had used their specialised swimming pool facilities, many’s a time, for our children’s special needs, and it scared me that we were so close to such evil (I can find no other word for what was done, sorry). I honestly felt sick in my stomach and asked my husband to turn it off at one stage. I cried watching it and my heart went out to the victims and their family members. I immediately told my husband that we were never going back there. Upon reflection though, and after the shock of what we witnessed, the next day I started thinking about the other staff there that probably didn’t have a clue that this was happening.

And I started thinking about those that did know; but did nothing about it.

I am a very fair and open minded person, and I have in the past always stood up to what I believe is wrong. I know if I was in that situation I would definitely have told the authorities. But that can be easier said than done. Maybe some of the workers were themselves, victims of the same bully tactics and were just not brave enough to stand up to it? Or maybe they were neighbours, or even related, to their colleagues – remember we are talking about a small community, where everyone knows everyone else. Or maybe, they were just so used to this type of culture, that it became the “norm”.

Please be assured that I am in no way condoning what anyone did – it is all so wrong – but I am just making an observation that we are all people, with different circumstances, and I just wondered, like so many others, why this was let happen, for so long. What surprised most of us was that HIQA had just inspected these facilities and had reported that all of the recommendations had been implemented and the facility had received positive reports from the Regulator on subsequent unannounced visits. So would HIQA have been able to know this was happening?

I very much doubt it, as I believe nobody would act like that around anyone outside of their “circle” [and especially HIQA!] because they clearly knew it was wrong what they were doing.

Hidden cameras were the only way this abuse could have been found out. And when the HSE’s Director, Tony O’Brien addressed the situation with a letter to the nation, I for one, was glad to see that this method of investigating could be a real possibility going forward. His letter seemed personal and he didn’t just blame management, saying that “…there must exist a significant element of “personal responsibility” from individual staff members.” And to those that did nothing, that he “…must now give serious consideration to initiating disciplinary procedures against those staff members to examine their apparent inaction.” He went on to plead with all health professionals asking “all of you, without fear or favour, to blow the whistle on any instance of misconduct, disrespect, or abuse towards residents, clients, patients or any service user should you ever witness it.” But it was his one particular statement saying that “Staff members throughout the health service I have no doubt will, like me, feel utterly disappointed and betrayed by what they will see” that made me question, was it really the right thing to do, to not bring my daughters to Áras Attracta again?

Should I so quickly taint all the staff in that facility with the same name?

I started thinking about all carers and care facilities across the country; about all health professionals in hospitals; all those who worked in primary care and the many who worked in the community including GP’s, charities and pharmacists. Were people like myself, considering taking their loved ones away from a service provision because of this or other shocking stories? Or resisting to use them in the first instance “just in case”? Were we deciding to pull our support from all charities because a few had abused their positions? I wondered about the negative effects and influence that these reports could have on patients, health professionals and our health service as a whole. I wondered then why all of the positive work and outcomes that happen in our health service every day, were nearly always kept hidden away from the headlines? Could these encouraging stories too, not create a positive effect and influence the patient, health professional or health service to change their way of thinking in a constructive manner?

I suppose, if people don’t know about the negative stories, how can anything change?

But if people don’t know about the positive stories, how can anything change either? It works both ways. As I drive to and from work, bringing the girls to school and going in and out of hospital appointments, the car radio is always on in the background and I hear the usual words from the newsreader…lack of resources, unions, strikes, long work hours, disagreements, waiting lists, trolleys, governments, disputes and so on. But have we all, as a nation, become somewhat immune to it all? As if we were vaccinated with a dose of “we’ve heard it all before” and we just don’t get it? We march in our thousands so we won’t have to pay for water, yet where are we when it comes to our health services?

Why does it take a shocking story to make us listen and take action?

The poor lady who died from Septicaemia and was denied an abortion; another who was on life support with an unborn child within her and no–one knew what to do; an 87 year old woman left on a trolley for 16 hours. All of these made national headlines. Stories like these can make our blood boil with anger. They can make us feel scared. They can make us wonder, how did that happen? Other times, we can even find a tear rolling down our face, at the thought of a family going through such anguish for the unnecessary loss of a loved one.

But what about the patient who was misdiagnosed for nearly four years only to be then diagnosed with Juvenile Arthritis? And the mom who raised serious concerns over her new-born’s health and was told that there was nothing wrong, but that she herself had postnatal depression – only for her baby to be then diagnosed with three holes in her heart and needing major heart surgery – and only because the mom persisted? Or the child still trying to be diagnosed after three years of suffering with sporadic high blood pressures, facial flushing plus an array of unpleasant symptoms?

My three daughters. Three separate cases. And they are the reasons I am not immune to anything in the news. You see, this is my health service. It is my daughter’s health service. It is even my husband’s health service. And it is yours too.

We should all be working together to get it working better. And that includes, in some cases, changing our policies and laws too, to help health professionals make better decisions. Now I know not everyone is perfect – and believe me, just after tapping into a small part of my personal story many would say I’d have every reason to hate our health service.

But I don’t. Because there is so much good that happens there.

A nurse who sees us come into hospital nearly every week, and ensures we’re not left waiting until last.

A doctor who addresses me as “you poor sausage” and smiles.

A cleaner who helps root out a pillow so that I can rest my head beside my daughter’s hospital bed.

An administrator who goes out of her way to print all the blood tests for me.

A consultant who rings me, herself.

A specialist who fits us in to their clinic, if we’re in Crumlin seeing another team, to save us a second 200km journey.

A charity that connects me to other parents in the same situation and provides local support.

A radiologist who puts on “One Direction” for my daughter during her MRI.

A pharmacist who listens to my concerns over medications (and has even witnessed me breaking down in tears).

A home care nurse who calmed me when I had to inject my daughter for the first time.

A GP who is like my counsellor at times.

A nurse specialist who answers my emails personally and makes me feel like I’m not a neurotic mother.

We really do need to try to focus on all of this more. Yes, it is hard when we are going through it as patients or carers, and yes, we aren’t just numbers. And there is never an excuse for anybody ever to be mistreated, neglected or otherwise. I, myself, had always felt too vulnerable to complain, or even get a second opinion, until I realised that I was doing no-one any favours. And I noticed thankfully that my children did get the care they needed when I did speak up.

In saying this, there is a way to do this – and it’s not by being aggressive. Remember, doctors and nurses are people too, working under huge constraints and some of the problems have simply arisen due to lack of resources and funds. I can only imagine how hard it can be for a health professional working in the public service nowadays. The morale must be at an all-time low. Imagine everyone giving out about the place you work every single day: on the news, in waiting rooms, on our social media news feeds. Imagine, you go to work, and everyone who works there is also giving out about where you all work too! Nearly all of us will statistically be users of our health system in some way or other, and yes, that includes our health care professionals. And so from the inside out and the outside in, we should be praising the good, encouraging what works and learn from that.

It’s not just the media that spread the negativity; we are all feeding into it.

So how do we change it?

Do you ever read about a child getting the all clear from a rare tumour, or when a new treatment has come out for a specific illness, or when someone learns to walk again after being in a serious accident? These are real “feel good” stories – and it took health care professionals to achieve this.

We need more of these stories.

And not even the big dramatic ones – what about when a nurse sings a song to an elderly lady and brings tears of joy to her eyes? We know if we feel good in our jobs then we will do a better job – and the same applies to our health care professionals. A friend of mine posted recently on Facebook about how our local A&E had provided such a quick and friendly service and he didn’t know what all the hype was about. I did smile to myself, as I am a frequent user of A&E (unfortunately) and it’s not always “quick” but I did think it was a really nice post, and so I told some of the health care professionals in the hospital about his comments.

They were chuffed to get such nice feedback.

You see it isn’t just money that will fix this problem (though it does always help!) A simple thank you, smile, a word of empathy or recognition for the small things in a fast paced and stressful environment can go far. And that goes both ways. We need to show it to our health care professionals, and they need to show it to us. We can all be part of the solution, not the problem. We, as patients, are the link between all of our own health professionals, so we should be helping them, to help us.

So am I personally influenced after all the negativity that has been recently brought to our attention?

Do I now live in fear and mistrust of my health professionals? Do I decide never to use a particular service provider again because of one persons (or group as the case may be) mistake?

My answer is no.

Because, first of all, thankfully, my children are getting the care they need and are doing really well at present. And second of all, because [and without sounding egotistical!] I am one of the most important people in our health service.

I am the patient.

I choose from now on to be informed, to be more knowledgeable, to ask questions, to stand up for myself, to be part of the decision making process, to trust my health care professionals and to also trust my instinct. I have done my maths and have summed up that the proactive patient + practical professional = perfect partnership. It can all start with tuning in to the positives, and sharing the outcomes.

CEO of Cleveland Clinic, Toby Cosgrove even stated himself last year that “The day of the passive patient is over….as part of your care-giving team, you need to give your caregivers a frank and accurate account of your own health history and condition…”

You see, it’s all about being proactive, to ensure we never have to be reactive.

Because after all, we are all here to either get better, or to help someone get better.