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.