Press the scroll up and down button to read the full Manifesto
Why should health professionals have to shout from the rooftops that their patients may be harmed or die because they are under resourced/funded? Why should patients or carers (often sick themselves) have to set up their own advocacy groups out of serious concerns for themselves or their loved ones? Why should ordinary people have to march for the homeless and the most vulnerable of our society?
Imagine if charities, unions or voluntary groups did not have to compete with one another so that they could get better access to health services; recruit/retain more doctors, nurses or consultants or reduce waiting lists for treatments or surgeries? In a perfect world, all Irish citizens and organisations (private/public/voluntary) would be able to collaborate and collectively advocate to ensure everyone had “the right to the enjoyment of the highest attainable standard of physical and mental health”.
In a perfect world, this, the fundamental right to health, would be in our Constitution.
Hardly a day goes by and we hear devastating stories about the lack of housing; untimely and unequal access to medical services/treatments; and unhealthy/unsafe working environments (especially in healthcare). Having the constitutional fundamental right to health could ensure our State really think about the decisions they take, and actions they make, which impact directly on the citizens of Ireland.
But don’t we already have the right to health?
In theory, yes. In reality – partly.
The fundamental right to health (which is somewhat different to the right to healthcare) means that everyone equally has the right to access all medical services, sanitation, adequate food, decent housing, healthy working conditions and a clean environment.[i]
Despite the fact our State has subscribed to various EU human right laws[ii], our State do not always have the power to implement these laws in full. [vi] It has been seen on numerous occasions that our Constitution can often prevent our Government from providing some of the most basic human right principles with regard to social, economic and cultural laws. The need for public referendums to change our Constitution (e.g. Marriage Equality Act and 8th Amendment) are some cases in point.
Does this mean we have no right to health?
Unlike many other countries across the world[iii], Ireland has no specific constitutional fundamental right to health.
However, we do have a few laws highlighting the States obligations for the provision of healthcare, many of which can be found in our Irish Statute Book, and our Constitution. For instance, the right to bodily integrity means “the State may not do anything to harm a person’s health or life”. The right to life means “you have the right not to have your life terminated or death accelerated.” We also have “the right not to have our health endangered by the State”.[iv] These laws may seem independent of one another, but in fact they
“interdependent and indivisible, meaning that rights are linked and not
protecting one right may impact on another.[i]
So, are these not enough? Do these current laws not provide enough protection to the citizens of Ireland regarding decisions made by the State, in relation to accessibility, equality and safety?
Or, more importantly, could it be negligent of the State if they did not uphold these laws?
What is negligence?
Negligence, in medical terms, is deemed to be any action, or omission, made by a medical professional which leads to a patient suffering an avoidable injury, having their condition worsened or which causes them harm. For instance, a delayed diagnosis could lead to a possible medical negligence case.[v] Medical professionals can be held to account for this, and other such cases, because they have a legal obligation (duty of care) to ensure the safety and welfare of their patients.
So does the same legal duty of care on health professionals, expand to decision makers in the State?
What if it is found that a delayed diagnosis, was in fact, not caused by a medical professional but instead due to a lack of, or inadequate supply of resources, staff or facilities in the health system? In other words; what if a patient could not, in the first instance, access diagnostic services in a timely manner? What if they couldn’t see a doctor, have a scan or get surgery on time because the system was under-resourced or facilities were not up to standard? What if the HSE, in the first instance, was under resourced because of decisions made by the State?
Who is at fault then?
The medical professional (who couldn’t see the patient in the first instance); the State (who decided/didn’t decide on the allocation of funds/resources/staff/facilities); the HSE (because they didn’t manage resources properly) or nobody – because that’s just the way it is?
If we have the right not to have our health or life endangered or harmed, then could it be said a case could be taken against the State for a delayed diagnosis?
Is a decision an action?
It is important to understand in clear terms what each fundamental right means. For instance, the right to bodily integrity means the State may not do anything to harm a person’s health or life. To “do” something is to perform an action. When a medical professional makes a decision (action) to do something, such as prescribe a medication, there is a duty of care on the doctor to make an informed decision, that is to (in as far as practicable) learn as much as they can about the patient before prescribing (e.g. find out about other medications, conditions, allergies etc.)
If this stands true, does the State then not also have an equal duty of care to find out all the facts before making a decision to ensure they do not harm or hurt a person’s life?
Our Constitution would imply that they do.
Informed Decision Making
The State are acutely aware that our health service does not have an adequate amount of health professionals and sufficient facilities/equipment to meet the needs of all citizens. The State know there are not enough houses for all the citizens in Ireland. Without a home or enough health professionals could people’s lives or health be endangered or harmed? It doesn’t take a mastermind to come to the conclusion.
Thus, it is fair to say that the State are informed.
Should the State then (much like a medical professional) not provide the appropriate “treatment” (i.e. funds, resources, staff etc.,) especially when made aware that if these were provided, they could prevent harm or injury? If the State makes (or does not make) timely decisions which directly impact on people’s lives with the full knowledge that the output of that action could harm or endanger a person’s health or life, is there not a duty of care?
Duty of Care and Foreseeability
The duty of care is looked at through the lens of foreseeability; in other words, can it be reasonably foreseen in fact, what actually happened, led to the damage? Unfortunately, foreseeability has been a temporal conflict, looked at in the present, to events that happened in the past. The difficulty for the argument of the State making decisions for the future is that we are now looking at foreseeability; for events that may happen in the future.
If medical professionals (and they do!) openly tell the State that it is foreseeable that patients’ lives or health will be at risk because they cannot diagnose or treat in a timely manner, because of lack of staff/resources/equipment, then it would seem the State must take action.
Is it not then the State’s duty of care to immediately intervene (take action) to prevent this from happening?
Timely Decision Making
If a rural community did not have a local GP or ambulance service and a patient died while waiting for services miles away to arrive, and it was foreseeable that this could happen, who would be responsible? If a patient was on an unnecessary waiting list for surgery and their health was permanently damaged because they were not being treated and/or diagnosed on time; and it was foreseeable that this could happen, who would be responsible? If an elderly person is left on a trolley for days because there weren’t enough beds or nurses, who would be responsible? If a person did not have shelter, food or water and they died on the streets, who would be responsible?
If time is lost, a life can be lost.
Could a case currently be taken for negligence and or possible wrongful death, considering the fact that risks to a person’s health or life were foreseeable by the State? Having regard to our current constitutional rights, could there potentially be a case for negligence in relation to any decision made by the State for the people, which could “accelerate death”; “endanger a person’s health” or “harm a person’s health or life”?
The thing is, it shouldn’t come down to citizens taking legal cases against the State. Taking the litigation route is no easy task. Never mind the costs and time involved – it often forces someone who has already been hurt, relive their painful experiences and live with the stress that they may risk losing their case, especially when going up against an organisation which has unlimited legal resources. From the many I’ve spoken to who have done this, I have learned that honest accounts; meaningful apologies; preventative action for others; and reimbursement, in that order, are usually the main reasons people take legal cases against the State. And there is the other side (which I hate saying because I am a firm believer in justice and accountability) but public legal cases come out of taxpayers money. This is not good for our economy.
Proactive vs reactive
But what if we had a system which did everything in it’s power to ensure no-one was harmed in the first instance? If “the Health Service Executive shall, to the extent practicable, further its object, the need to secure the most beneficial, effective and efficient use of those resources” surely the State should provide adequate resources in the first instance to allow for same?
We all know the saying, prevention is better than cure.
Having the constitutional fundamental right to health does not mean the State would have to provide everything immediately (this would be near impossible and probably unsustainable). But it does mean that our Government would seriously have to sit down and think about any future decisions they make to ensure they are doing their absolute best to prevent injury or harm to a person’s health or life. In other words, knowing that they could be equally as accountable as a medical professional, could ensure they make smarter, safer and more efficient decisions, not just for citizens, but for our economy as a whole.
Who are the drivers for change?
In consideration of the fact that we do not currently have the constitutional fundamental right to health, do our current laws provide enough protection to the citizens of Ireland in relation to accessibility, equality, housing and healthy working conditions?
This I do not know.
But one thing is for sure – the people of Ireland are becoming increasingly agitated about the decisions the State are making that are impacting directly on their lives, and our country as a whole. People are scared.
It just takes one person to test our current laws to see if they are fit for purpose.
It just takes one person to fight for our constitutional fundamental right to health.
Warning bells have already rung for this.
I know if my customers told me that I could potentially harm even one person I would stop in my tracks and reassess.
So why are the Government not doing the same, considering it is the Dáil, in totality, which makes the law?
The Big Question…
Although the Minister for Health has overall constitutional and political responsibility for the Department of Health, it is not the responsibility of the Minister on his/her own to make this decision, it is the collective responsibility of the cabinet, which is the Executive of the State. While the executive power is conferred on the Government, it is important to note that the Minister(s) are the driving force. We, the citizens of Ireland, can only change our Constitution through public referendum. So, should we ask our Ministers to drive this agenda and ask for a referendum, or do we stick with our current laws and hope for the best?
Should the Fundamental Right to Health be included in our Constitution?
I know my answer, but I would love to know yours.
Feel free to comment below, on Twitter @oliveblogs or email me at email@example.com
**Please feel free to counteract anything I have said that may not be factually true or share links with me to evidence that I may not have included/excluded. I am only going on my own knowledge and the evidence presented to hand. I will edit this post and cite your response if needs be.**
For clarity, I want to make it explicitly clear that:
- I am not aligned to any political party, and I do not begrudge any political person(s)
- I am not advocating for people to take legal cases – I am solely advocating for the fundamental right to health
- I have no conflict of interest and have not been asked (or funded) by anybody to write this article
- I am not a lawyer or barrister (I’m just a mere citizen)
- I am not suggesting in anyway that the Government are currently breaking any laws, I am just asking questions (Article 40.6.1.i – The right to freely express your convictions and opinions)
- Personal Lived Experiences: I am a mom to four daughters (ages 1 – 16) all of whom have various complex chronic health conditions. I cared for my (late) dad who was on over 22 medications and my husband had a stroke at age 42. I live with various health conditions myself. Living in Co. Mayo, (over the last twelve years) we have made over 200 round trips to paediatric services in Dublin alone.
- Professional Lived Experiences: I am also an experienced healthcare advocate; certified patient experience (PX) specialist, international speaker, recognised researcher and award winning social entrepreneur.
*Warning this is a long blog post – I’m not apologising for it’s length, I’m just giving you the heads up.*
Even writing this blog I feel myself shaking.
Fear reaches peak as I wonder if my story will lead to even more negative repercussions for me. Anxiety flows through me as I recall events that deeply, deeply affected me. Nearly ending in the loss of my life.
Nearly three years ago, I was thrown into such an unexpected crisis that it directly impacted on me; my family; my business; my shareholders; my reputation; my career and those who were working for me, and with me.
The decisions made on that fateful day, and the months to follow, had such a negative impact they affect me still to this day.
I had so many opportunities to stand up and speak out about this issue (something of which my mentors and advisers supported me in doing so).
But I didn’t speak about it.
Being at all times open, honest, transparent and willing to compromise, I tried my damnedest to resolve this particular issue privately and pleaded with them to avoid a costly litigation battle.
I have always held myself to account. I have always held others to account. I have always stood by my ethics: I believe in working WITH people, not against people.
I escalated to the top of the top of the top. I shared all of my information with the hope the same would be reciprocated. I bought into a resolution process only to learn not all was as it seemed.
Oh, if I had only known then, what I know now…
I am still staying silent, for now.
But. I am being pushed to the brink. As every day goes by I find myself in complete despair.
So how does one not advocate for one’s self when people need to be held accountable for their actions?
One does not publicy advocate because it is one of the hardest things in the world to self-advocate.
I know from many of my advocate friends in healthcare, just how hard it can be. I know from recent social media activity, just how horribly advocates have been treated.
And, truthfully, I am scared.
Yet, I am rarely scared.
I don’t shy away from controversial topics. My history in advocacy is a testimony to this.
I have been an advocate nearly all my life – advocating for myself as a child, a patient, a parent, a carer, an employee, a volunteer and an employer. I have always advocated for others – my children, family, friends, staff, colleagues. I have stood on international platforms advocating for all patients, carers, families, service users, health professionals and the public, as a whole.
I am also an activist – I don’t just talk the talk, I walk the walk.
But as time goes by I am getting more and more tired of people (especially those in “positions of power”) praising advocates who sing to their song, yet ignore/isolate those who go up against their agenda.
I have no tolerance for people who treat others badly.
I am sick of watching advocates being vindicated/singled-out/isolated/ignored publicly. I am sick of seeing this being done (almost slyly) by people who have a duty of care to do the complete opposite.
To be clear, in this blog I am not talking about the “big” subjects such as equality, global warming etc.
I am talking about when an individual advocates for a particular topic that has personally concerned/affected them. Examples of these issues could include bullying in the workplace, medical negligence etc.
Even more specifically, I am talking about advocacy in the healthcare arena.
It goes against every ethical principle in healthcare, to vindicate an advocate for others, who then self-advocates for themselves. Or vice versa.
Example in Practice 1: Health Professional Advocate + Self Advocate
A nurse advocates for a patient who is being treated badly by a doctor. Nurse is praised for advocating for the patient. The nurse advocates for herself, who is being treated badly by a doctor. Nurse is vindicated/isolated/ignored for advocating for herself. (E.G. Bullying in the Workplace)
Example in Practice 2: Healthcare Advocate + Self Advocate
A healthcare advocate stands up publicly for other patients who use certain health services. The healthcare advocate is praised publicly for standing up for others. The healthcare advocate stands up publicly for himself who works with/in/for health services. The healthcare advocate is vindicated/isolated/ignored for standing up against health services. (E.G. High Profile (Often Paid) Patient Advocates / Charities)
Example in Practice 3: Self Advocate + Public Advocate
A member of the public stands up publicly for themselves in relation to how they were medically mistreated by a specific health programme. The advocate is praised for their bravery. The advocate then speaks up publicly for others who were/could be medically mistreated by that specific health programme. The advocate is vindicated/isolated/ignored for standing up for safer practice. (E.G. High Profile Cases – e.g. Narcolepsy caused by Pandemrix Vaccine or Cervical Check Scandal)
The scenarios may differ. The genders may differ. The industry may differ. But one thing is for sure – the feeling that that self-advocate has, does not ever differ.
I know (from personal experience) that it can take a serious amount of courage for a person to stand up for themselves, be it publicly or privately.
Often an advocate may feel they cannot speak up and out for themselves – and so they stay silent:
- The person may be too scared to tell anyone about the problem, for fear of the problem getting worse
- The person may be being bullied/victimised by the person they are supposed to report to
- The person may feel they have to “suck it up” (sure, it’s part of the job or that’s how we’ve always done things)
- The person may feel they are the problem (as implied by an employer/public/professionals)
- The person may want to progress their career: feel it may be career suicide to “stir it up”
- The person may fear funds will be stopped in their organisation/charity
- The person may not know how/who to escalate the problem to
- The person may not recognise they are being bullied (workplace mobbing is an example here)
- The person may be an extreme introvert and not be able to talk to anyone
- The person may not trust anyone (due to how they were treated)
- The person may live in hope that it will “sort itself out”.
- The person may not want to upset colleagues, let them down or make them feel they have to “choose sides”
- The person may be afraid of any negative repercussions
- The person may feel the public will not understand the topic enough/think it’s not important
- The person may not be healthy enough to advocate
- The person may feel they will not receive the care they need (medically)
- The person may feel they are not (legally) allowed to advocate publicly
The list goes on.
Furthermore, the advocate may feel they will not be supported by anyone – so what’s the point? Related healthcare organisations, NGO’s, charities or individual colleagues/staff may actually want to publicly support the advocate, but because they are in fear of potential negative repercussions for themselves or their organisations – they don’t.
Even other healthcare advocates may not show their support.
And the advocate knows this.
This in itself is wrong – but it is understandable too why this may be the case – especially in a close knit healthcare network where strategic relationships are the deal breakers.
Taking all of these complexities into account, it is obvious to see that when an advocate speaks up for themselves it is a seriously brave move.
Advocacy is the act of pleading or arguing in favor of something, such as a cause, idea, or policy. In essence, advocacy is actively supporting something important to a person. (1)
Across the world, health organisations say they support advocacy.
But do they really?
Case Study Example:
A senior manager has a specific role in the promotion of a specific health programme. A member of the public contacts this manager raising concerns they have of the programme, based on personal experience. The manager decides to meet with them and/or send links to “evidence based” materials to “reassure” them. The manager may ask the individual to raise the issue as a complaint.
This goes on for a number of weeks/months/years (yes, seriously – years).
The individual soon realises that the manager does not have an open-mind to the idea and/or information is being held back on purpose. The individual is continually frustrated/concerned and eventually decides to speak publicly about the topic, concerned that there is a patient safety issue. Immediately, the manager feels threatened. All the work they have done could be unravelled – especially if the public buy into the advocates theory and/or evidence.
What does the manager do?
- Do they go straight to their communications/legal department for a plan on how to respond?
- Do they use the “wait and see” approach – how much reach does this topic get/how many followers does the advocate have? Has the media picked up on it?
- If they personally respond do they respond in a defensive, passive aggressive or open-minded manner? Do they twist words and insinuate blame on the individual?
- If they don’t personally respond do they send text/online messages to colleagues letting them know “their side” of the story (bias)? Do they ask other “collaborators/insiders/overarching company” to respond online but “be careful”- i.e. protection in numbers/group mobbing?
- If they don’t respond, how long do they ignore for?
The manager often takes what is said as a personal attack. Their agenda/belief in the programme is being directly threatened, and so may think the advocate is “out to get them”. The manager may worry about their job – what if they do not meet their targets because somebody has potentially devalued the programme? In this instance, the managers response to the advocate is usually defensive, dismissive, passive aggressive – or downright aggressive.
This leaves the advocate, not only frustrated and isolated – it can also leave them extremely vulnerable to backlash.
We have seen people in power not only completely dismiss concerns, but actually publicly name call.
Remember, the advocate is only actively supporting something that is important to them (and/or a group they are advocating on behalf of).
Not someone. It is not a personal attack.
If the manager really wanted their health programme to work, while ensuring it was safe for patients then, by default, listening and acting on said concerns is not only the right thing to do, but the only way to do it.
If the manager really cared about patient safety, then they should investigate the issues in a completely open minded manner and instigate research/focus groups/clinical trials to validate if these concerns are/are not valid. Or even better – hire an external person, with explicit consent from the advocate, to perform a review to remove any personal reporting bias. Furthermore, they should find out why the advocate personally feels so strong about this particular issue. In taking this approach, not only would it open conversations, it could potentially dissipate tensions and provide an opportunity to learn.
If the concerns are valid, then the programme can change for the better.
If the concerns are not valid then the advocate can feel reassured.
The above is only an example, but simply change the job titles and topics and it can be easy to see how relevant this scenario could be to so many areas e.g. workplace bullying etc.
There is a very simple solution to working with advocates – have an open mind, listen to their concerns, evaluate their concerns, find out their overall objective and work with them to learn and better the cause. Ask them to join your team.
Most of all understand, it is one of the bravest things to do to stand up for one’s self.
Most advocates are not negative – they normally only go public out of sheer frustration from 1) not being able to get in touch with the people they want to raise the concern with and/or 2) not being allowed to engage properly with the people they’ve raised concerns with and/or 3) being listened to but no solutions/clarity/answers forthcoming.
At the moment I really have nothing to lose by sharing my story. I’ve lost it all already.
(Well actually, truthfully I kind of do have things to lose – organisations may stop asking me to speak at events or I may not be seen as an ideal candidate for jobs I applied for or people I’ve worked with may stop engaging with me publicly or decisions may be made by people in power to make my situation worse.)
These are risks I have been weighing up for a long time. Of course, I will know if this blog leads to any of the above happening. I may or may not call people out on it – but I definitely will know.
Right now, I know, I just need to make the decision to speak up or shut up.
I’m not afraid of the public eye – I am afraid of bullies.
I need to advocate for me, I know that.
Especially when I know those that did wrong, not only denied – but worse: lied. That failed processes were the causation of problems which followed. Or that someone else’s agenda purposefully prevented proactive discussions which could have stopped the inevitable.
Personal bias overriding public buy-in.
I need to advocate for me especially when I know that no workable solutions were offered, even when the most practical and reasonable of solutions were presented. Or to find those who preached engagement, did not practice it. Or when admissions of failures were made, and recommendations were not implemented.
I need to advocate for me especially when my name and reputation is darkened by unfounded insinuations.
SO what has stopped me speaking up until now, three years after the fact?
- I knew there were people on the inside who believed in what I was doing. They were advocating quietly for me on the inside and I wanted to dual-protect those people. I knew they felt they had to stand by their clan for fear of personal repercussions.
- I believe in working with, and not against, people – name and shame is not my game.
But I cannot think about other people anymore. I need to put me and my family first.
My reasons for sharing this article?
- I am advocating for other advocates – I am tired of hypocrisy and double standards in our health system.
- I need to stand by my values – I need to speak up for myself, or else I am not an advocate, nor an activist.
And lastly, I am calling you, yes you, to action.
Don’t be a bystander.
Stick to your ethics.
Do you or don’t you support genuine advocates?
You do not have to necessarily support the topic the advocate is raising.
But at least…
- Acknowledge the strength it took for that person to speak up and speak out.
- Acknowledge the pain, hurt or fear that advocate may be feeling.
- Acknowledge that, more often than not, the advocate did not make the decision to speak publicly lightly.
- Acknowledge that the advocate can more than likely back up what they’re saying with facts and evidence.
- Acknowledge that the advocate may come across as angry/emotional – this is usually out of sheer frustration.
- Acknowledge that the advocate is often taking a huge risk by speaking out.
- Acknowledge that the advocate is not just an “advocate”.
Advocates are people.
People who value themselves enough to fight for what they believe is right.
People who are willing to fight for answers, truth, clarity and resolution.
All I ask is that you try to be kind.
Ask yourself the question:
“What would you do personally if you were in their shoes?”
And to those in positions of power:
“What would you do personally if you knew what you knew?”
- The Value of Advocacy, 6/08/2012 Link: https://institute.uschamber.com/the-value-of-advocacy/
“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”
I arrive at a hospital I haven’t been to before.
I have been told in my appointment letter to go directly to the outpatients desk to let them know I’m here.
I look around – there are three reception areas – but which one is for outpatients?
I logically choose the one nearest the front entrance, wait in a queue for five minutes but am then told that this is the reception area, and that I need to go to the one near the coffee shop. Looking at my watch (as I’m now afraid I’ll be late) I head over to the queue that has over ten other people waiting also to sign in. Eventually, ten minutes later, I give my details to the administrator and am now given new directions as to how to get to the clinic. I try to absorb everything she is saying and nod that I understand. I try my best not to forget.
But I do.
I stop and ask a nurse along the corridor for directions. She kindly helps me, but I can tell by her expression that she is trying to get somewhere in a hurry – probably to tend to a patient – I hate having to ask.
I eventually arrive at the waiting room (15 minutes late through no fault of my own) but am unsure if I should just sit there with my file, as a note on the clinic says not to knock on the door. I ask another patient. They tell me that a nurse will come out to me to collect it. I sit back waiting, noticing that Jeremy Kyle is showing on the TV. Not interested, and slightly concerned about the content being shown as young children are in the room, I go for my phone to keep me from boredom.
Only to find there is no Wi-Fi available in the hospital.
There are no magazines or newspapers – only books for children. I would love a cup of tea, or even a glass of water, but I can’t see any machines nearby. I know I am in for a long wait.
Ten minutes later a nurse comes out and takes all the files from various patients. I wonder will we be seen in order of the files being received, or by the times our appointments were at. Either way, I’m here now and I prepare myself for the long waiting period I have now become accustomed to through using public health services.
I see an elderly lady get wheeled into our waiting room – she has obviously just been in A&E or been up on a ward. The porter takes her file, knocks on the door, explains to the nurse her situation and then leaves her there to tend to other patients. I feel embarrassed for this lady, being left in a bed in front of everyone.
Thankfully she is seen within the next half an hour, and the porter comes back to collect her.
An hour later, I now really need to go to the bathroom – but am afraid to leave my seat in case I am called. I ask another patient could they listen out for my name and could they explain to the nurse my situation. I have learned that patients often help each other out.
I see a mother with a disabled child come in, there are no seats left. I offer my seat up.
Ninety minutes after my appointment time, I am now called in. Frustrated and now exhausted from boredom [and standing], I still put a smile on my face, as I know it is not the nurses or doctors fault.
I have a few questions written down to ask the doctor but I am now acutely aware that there are many more patients to be seen.
I meet the doctor, and it is not the consultant I thought it might be – it is his registrar. I am disappointed, but don’t say anything. Upon shaking hands with him I notice that the doctor seems rushed. He doesn’t make eye contact or introduce himself.
At this point, I make a decision to not to take out my questions but instead try to remember what I had wanted to ask. I feel like I am adding to the chaos of this doctors day. I feel guilty.
He asks me questions about previous appointments – I panic as I thought he would have them in his file. I am told that hospitals have different files and the information doesn’t transfer over. I try my best to remember dates; tests I had done and which consultants I had met previously. A nurse is sent off to retrieve previous information from my GP – it is not in my file. She comes back with a Fax document.
The doctor takes all of my information down, not looking at me as he does so. He asks me questions about my own and my family history – I try my best not to leave anything out. I suddenly can’t remember what the name of one of my medications are. I feel embarrassed.
The doctor moves on and proceeds to examine me quickly.
He tells me I look good and once I remember my medications he says that he will increase one of them. He gives me a new prescription. At this point, I don’t feel strong enough to tell him that, that medication makes me feel ill, meaning I often don’t take them. I proceed to tell him I regularly have pain in my knees. He tells me to keep a pain diary, but does not give me a diary of any sort. I just take his advice and walk out of the room – ten minutes later.
I go the reception area for my follow up appointment. I am given a date for six months later.
Before I leave the hospital I can’t find the parking ticket machine. I again ask the receptionist. I pay €7.50 for my two hours time in the hospital.
When I get home I go to fill in my new appointment time in my calendar. I notice we have a wedding on the same day. I ring the hospital back only to find all dates have been taken by now for that month and they can only give me a new appointment for two months after that time. At 8 in the morning. I have to travel from Mayo to Dublin. It will be an early start. I go about getting sheets of paper to design a pain diary of sorts.
Later that day, I pick up my new prescription from my pharmacist. I am told that I cannot take that dose, as it’s too strong for me. The pharmacist rings the hospital to clarify the situation.
I ring my husband in work and tell him the doctor said I’m fine. My husband is happy about this. But I am not. I just don’t feel reassured.
The next week, I again end up back in my GP’s office asking him what I should do. I am now referred to see someone else. He adds an anti nausea drug to help counteract the sickness I get.
I somewhat now feel reassured that I have been listened to.
But why did it take for my GP to help me feel this? Was all the time, stress and worry necessary? Could these issues ever be resolved?
And here are a few thoughts of my own on how I think it could be done with minimal cost, time and efforts.
Problem 1:“I look around – there are three reception areas – but which one is for outpatients?”
Solution 1: Signposting or even lines and markings on the floor would help here. A map on the appointment letter could also help.
ROI*: Save time for receptionist; ensures patients are on time for appointments, reduces stress for patients and carers.
Problem 2:“I give my details to the administrator and am now given new directions as to how to get to the clinic. I try to absorb everything she is saying and nod that I understand.”
Solution 2: Again markings on the floor would help (i.e. follow the blue line until you get to Clinic 1, 2, 3…) or again even a little map would help. If the receptionist could ask the patient for a read back this would be helpful to ensure the patient does understand.
ROI: Save time for health professionals being asked along the way; reduce stress for patients and carers.
Problem 3:“I am unsure if I should just sit there with my file, as a note on the clinic says not to knock on the door.”
Solution 3: The note on the door could say that a nurse will come out to you.
ROI: Reduce unnecessary communication issues – especially required for those with limited communication abilities. Informed patients = better outcomes for all.
Problem 4:“I sit back waiting, noticing that Jeremy Kyle is showing on the TV…there are no magazines or newspapers”
Solution 4: A health and well-being talk show or small snippets of appropriate, relevant information for the patients attending that clinic could be aired, such as local resources, services or treatments – or even ways to manage medications etc. Daily newspapers and magazines from the hospital coffee shop could be distributed. Even notepads for patients to write questions or notes prior to their appointments could be made available.
Cost: Minimal – Low
ROI: Informing patients of resources can empower them to seek these out instead of having to ask health professionals for same. Boredom can lead to tension, thus leading to angry outbursts at times so alleviating this will create a more relaxed environment.
Problem 5: “I would love a cup of tea, or even a glass of water, but I can’t see any machines nearby.”
Solution 5: Install a water or coffee/tea machine – this will create additional revenue for the hospital.
ROI: Ensure patients aren’t dehydrated (important for well-being/blood tests); creates a relaxed environment and reduces stess. Hospital can gain revenue on vending machines.
Problem 6:“There is no Wi-Fi available in the hospital.”
Solution 6: Install publicly accessible Wi-Fi! Opportunity here to promote hospital, local resources through an app.
Cost: Mid – High
ROI: Reduces boredom thus reduces tension and stress. Stress can also lead to false high blood pressure readings. Having appropriate information pushed through this system could educate patients and carers. Also may allow patients have access/input to medical apps.
Problem 7: “I wonder will we be seen in order of the files being received, or by the times our appointments were at…I see a mother with a disabled child come in, there are no seats left. I offer my seat up.”
Solution 7: A simple ticket system could help here, or again this could be written on the note of the clinic door. Nurses could inform patients to come back at a certain time and they could feel free to use the bathroom/get coffee/tea etc.
Cost: Low – Mid
ROI: Ticket systems work very well and everyone feels it is fair. It also frees up space in the waiting area.
Problem 8:“I feel embarrassed for this lady [in the trolley], being left in a bed in front of everyone.”
Solution 8: If it is just for a clinic review then anyone who is in a trolley should be seen where they are placed, or later/earlier clinic times given appropriately. It is a patient safety risk, for them, and the patients in the room, to have them in an exposed environment. It also takes away dignity and respect of the person in the trolley.
ROI: Reduces patient safety risks thus reducing unnecessary infections, medications etc. Saves time, money for hospital. Reduces need for porter. Increases dignity for patients.
Problem 9:“Ninety minutes after my appointment time, I am now called in. Frustrated and now exhausted from boredom [and standing], I still put a smile on my face, as I know it is not the nurses or doctors fault, I still smile. Upon shaking hands with him I notice that the doctor seems rushed.”
Solution 9: You don’t need stats to know that waiting time for patients in public systems is usually over one hour! Increasing clinics, appropriate management of times [and sticking to them]; chronic clinics separated from acute clinics or having weekend clinics can all help reduce this waiting time. Having no seats means patients are left standing which can increase blood pressure leading to possible false readings.
ROI: Doctors and nurses can spend more time with patients. Reduce stress and risks for them associated with being rushed. Show true blood pressure readings. Patients not being left feeling panicked can create a more relaxed, engaged environment – often leading to more honest and the transfer of accurate information. Better chances of appropriate diagnosis. Saves money, time and stress.
Problem 10: “I have a few questions written down to ask the doctor…at this point, I make a decision to not to take out my questions”.
Solution 10: In the waiting room notepads [as mentioned above] and recommendations by health professionals to write questions down prior to appointments can aide in this.
ROI: If patients have questions to hand when talking to health professionals, they can leave feeling more reassured. The number of questions can be limited at times of increased time pressures. Reassured patients = better self-management; less unnecessary appointments, miscommunication and stress. Health professionals can make the most of their time with patients.
Problem 11: “I meet the doctor, and it is not the consultant I thought it might be – it is his registrar. I am disappointed, but don’t say anything.”
Solution 11: Having a folder with the various health professionals and their bios/backgrounds available in the waiting room can help patients feel reassured about who they are seeing.
ROI: This can prevent concerns patients may have about the health professional looking after them – often patients feel the “top consultant” is the best and can be untrustworthy of “junior doctors”.
Problem 12: “He [the doctor] doesn’t make eye contact or introduce himself. I feel like I am adding to the chaos of this doctors day. I feel guilty.”
Solution 12: Basic training with health professionals on communication and time management can alleviate this issue. Providing self care therapies and services for health professionals can help them better manage stress. Doctors and nurses feel guilty too.
Cost: Low – Mid
ROI: Happy staff = better outcomes for patients. Better outcomes for patients = reduction in money, time, resources and stress.
Problem 13: “He [the doctor] asks me questions about previous appointments – I panic as I thought he would have them in his file. I am told that hospitals have different files and the information doesn’t transfer over. A nurse is sent off to retrieve previous information from my GP – it is not in my file. She comes back with a Fax document.”
Solution 13: Effective integrated IT solutions across the system would help with the efficiency of the flow of information. FAX systems replaced with e-communication tools.
ROI: Having accurate information to hand is essential part of the diagnosis and treatment process. Patients cannot be expected to remember everything and they may not have test results to hand. Appropriate and timely diagnostic and treatment is the key to proactive care and can prevent unnecessary medications, use of resources and waste of time. Save time, money and resources. Better patient safety outcomes. Saves nurses having to leave their stations to retrieve FAX’s.
Problem 14: “I try my best to remember dates; tests I had done and which consultants I had met previously…he asks me questions about my own and my family history – I try my best not to leave anything out. I suddenly can’t remember what the name of one of my medications are. I feel embarrassed.”
Solution 14: There is always information patients will have that health professionals may not have – especially if it is related to self management and care in the home. A simple health organiser, app or diary can help patients capture information to have to hand for appointments. This should be recommended at the point of care by health professionals, and should be easily recognisable across the disciplines.
Cost: Low – Mid
ROI: When patients have accurate information to hand more informed and accurate decisions can be made by health professionals. It also aides in better self management and care in the home. Integrated care is about needs, not disease, age or gender. Simple health organisers or PHR’s can effectively reduce unnecessary readmissions, appointments, medication non adherence and so much more.
Problem 15: “Once I remember my medications he says that he will increase one of them. At this point, I don’t feel strong enough to tell him that I’m not feeling good and that, that medication makes me feel ill, so I often don’t take them. I also tell him I regularly have pain in my knees. He tells me to keep a pain diary, but does not give me a diary of any sort. I just take his advice and walk out of the room – ten minutes later…Later that day, I pick up my new prescription from my pharmacist. I am told that I cannot take that dose, as it’s too strong for me. The pharmacist rings the hospital to clarify the situation.
Solution 15: Health professionals could have triggers in their IT systems to help them remember to ask patients if they have issues with medications or are there any contraindications. Additionally, asking patients to note their concerns with medications prior to the appointment could be helpful. E-prescribing can be particularly effective here – ensuring medications are reconciled at every point of care. A trained pharmacist could be placed in outpatient clinics to discuss medications with patients. Ten minute appointments are often not appropriate to capture all the information required, and to then administer treatments or diagnosis. Proper time allocations should be considered in relation to the needs of the patient. Often patients are asked to keep diaries but are not given one, meaning they have to devise or resource one themselves – additionally meaning accurate information from them may not be captured upon return to clinics. Simple pain diaries (paper or electronic) devised by health professionals could be developed to ensure appropriate information is recorded, these could be given to patients at the point of care.
Cost: Minimal – High [depending on solutions]
ROI: If patients are concerned about their treatments, or adverse reactions, often they won’t take them. This contributes to medication non adherence**. Additionally, they may not disclose this to health professionals as they may be concerned that they will get in trouble. Open conversations and recommendations by health professionals can greatly reduce these issues. Effective medication reconciliation between hospitals and communities is key to ensuring patients are safe. IT solutions can greatly impact on the saving of money, time..and lives. Spending more time at a first consultation can reduce unnecessary follow up appointments or readmission, and this can save time in the long run.
Problem 16: “I go the reception area for my follow up appointment. I am given a date for six months later…When I get home I go to fill in my new appointment time in my calendar. I notice we have a wedding on the same day. I ring the hospital back only to find all dates have been taken by now for that month and they can only give me a new appointment for two months after that time. At 8 in the morning. I have to travel from Mayo to Dublin. It will be an early start.”
Solution 16: At the point of making the first appointment the receptionist could give patients time to look in their diary or phone to see if there are any clashes. Additionally, their IT system could trigger a few quick questions to ask patients or carers such as what is the best time in the day; is there appropriate travel services in place (i.e. buses, lift from friends/family) and where are they coming from (to give latest time possible for appointment if travelling from afar).
Cost: Low – Mid
ROI: Approximately €80 million a year is lost for the HSE for patients not attending clinics. Many reasons are cited for this but most of which I feel could be addressed through appropriate first point of contact when making appointments.
Problem 17: “I just don’t feel reassured…the next week, I again end up back in my GP’s office asking him what I should do. I am now referred to see someone else. He adds an anti nausea drug to help counteract the sickness I get.”
“I somewhat now feel reassured that I have been listened to.”
Solution 17: If all of the above solutions were put in place I feel I would not only feel reassured, but I would feel less stressed, more trustworthy…and all over safer. I also feel that health professionals would too.
Cost Overall: Priceless
ROI: Never Ending
If you have done any of the above in your health service or have ideas as a patient, carer or health professional on what else could be done, I would love to learn about them.
If you are a patient or carer and struggle with recording, storing or managing medications, symptoms or appointments then we have developed a simple to use health organiser called the MediStori, as funded by the HSE, and researched by NUIG. This may be a useful tool for you.
*ROI – Acronym: Return on Investment. Explanation: What the hospital/organisation/individual will gain/save in terms of money, time or resources by achieving the action.
**Nonadherence with medication is a complex and multidimensional health care problem. Adherence is defined as the extent to which patients are able to follow the recommendations for prescribed treatments. Taken from: www.ncbi.nlm.nih.gov/pmc/articles/PMC3711878/
Interesting articles you might like to read:
A 46 year old man stands at the kitchen counter in his house staring blankly at the two bags of medicines he has just collected from his pharmacy.
Maurice – his heart full of regret; his head racing with anxiety.
Feeling unhappy, scared about his future – and feeling, oh, so alone.
Suddenly he is stirred from his thoughts as his four children – two teenager boys and twin 10 year old girls – come bounding into the house with their mom in tow, after being collected from school.
He smiles at them, pushes the dreaded bags aside and asks them how their day was. Starts helping his wife with the dinner and goes about answering the twenty questions his inquisitive brood dive into.
His wife smiles over at him – she knows he is not himself. Knows he is tired. Tells him gently to go upstairs for a rest and she’ll take over.
Surrounded by people who love him – Maurice still feels all alone. Feels like he is a failure as a father, a husband, a man. Feels like a burden. Feels tainted with a label he can never remove.
Maurice has just been discharged from hospital for the fourth time that year, and on top of his diagnosis of rheumatoid arthritis, he now has been told that he also has depression and chronic fatigue.
He tries to take all of this in. Absorb what it means for his life – his family.
Having to give up his job a year earlier due to his debilitating condition he has found himself in a never ending cycle of pain; an inability to move due to severe stiffening of his joints; a constant tiredness from lack of sleep and an anxiety that never seems to leave him, even when he does sleep.
Maurice chooses to never share his concerns or feelings with his wife. He feels she has to make up for the job of two parents; sometimes feels like he is their fifth child. He hates being a burden her.
He also knows that she can sometimes get frustrated with him.
She tells him often that he should try joining a local support group, go to counselling or try new diets that could help alleviate his symptoms. She sits up for hours at night scrolling through thousands of online sites with the hope to find new treatments that might help him.
But Maurice is not interested.
He just doesn’t see the point.
He feels it is what is and nothing can change that. And as much as he doesn’t want to be depressed, he really doesn’t know how to change.
This evening in particular though his wife comes up to his room with a cup of tea, a glass of water and four of his many tablets. She sits at the side of his bed.
And she starts talking. About her, and the children.
She tells him that while having rheumatoid arthritis is one thing that there may never be a cure for, his thoughts are something that can be changed.
Tells him that she needs her old husband back; that their children need him.
Reminds him that after having her twins that she too had suffered depression and knew the only way to get through it was by talking to a counsellor and also opening up to her friends. She had wanted to get better for her husband, and her children. And most importantly, for herself.
She tries to motivate him into seeking help.
Maurice turns away from her on the bed and says that he’ll think about it.
Knowing that he won’t do anything about it, his wife gets upset and tells him she doesn’t know how much more she can handle. That she loves him but is finding it hard to manage it all on her own. That she wants her old husband back. The husband that cracked jokes which often made her “belly laugh”; the husband that would surprise her by finding old movies from their early days for their “date nights”. The husband that would give her a little spontaneous cheeky wink showing her he is still attracted to her.
They both know they haven’t been intimate in at least six months.
She sighs, gets up to leave; leaving a little leaflet on the bed beside him.
Asks him will he at least look at it.
As she leaves, unbeknownst to her, Maurice’s eyes fill up with tears.
He, again, feels like a failure.
He turns slowly around and picks up the leaflet.
He is surprised when he finds that he is actually interested in what this leaflet has to offer. It describes a local service which helps people better manage their health conditions – including depression. It doesn’t include counselling nor does it include faddy diets or potential “cures”. It seems like a very practical course.
Maurice thinks about it.
Logically he feels if he could take away some of the daily tasks from his wife such as managing his medications or reminding him of his appointments, he could take some of the burden off her.
If he could smile again, and mean it, maybe he could make her belly laugh again.
He picks up his phone and makes the call. Decides he will try this option. Decides he just doesn’t want to live like this anymore. He doesn’t want her to live like this anymore either.
He gets up out of bed, goes downstairs and tells his wife his plans. She is taken aback. He sees a small glimmer of hope in her. Inside he starts crying again. He really does hope that this will work.
On the first evening of the course Maurice is really nervous. He is there along with eight other people; six women and one other man. He feels like he doesn’t want to go through with it. But his wife has dropped him off and she is now at home.
He must just sit it out today, but tells himself immediately he won’t go back again.
The introductions begin. Everyone starts telling everyone else about their conditions. When it comes to his turn he also tells everyone that he has rheumatoid arthritis and finds it hard to sleep – but does not have the courage to talk about his depression.
The facilitators had also introduced themselves. They are not health care professionals – but people who have also had various health issues. This surprises him.
They give an outline of the programme that will follow – they talk about how to make action plans, make decisions about their care, problem solve, manage medications, how to better communicate with health providers and how to recognise the symptom cycle – something that Maurice resonates with all too well.
On the tea break, Maurice gets talking to the other man on the course, Joe. He finds that Joe only lives a few kilometers away from his house – and Joe too had to give up his job as he has Multiple Sclerosis [MS].
Joe is also married and has grown up children – and after chatting for a few minutes, Joe admits he too finds he is a burden to his wife.
The course commences and Maurice learns that everyone in that little room are actually going through much of the same things as he. He had thought he was all alone but realised quickly that it didn’t matter what the condition was – the problems were all still the same for everyone.
After the first evening, Maurice says goodbye to Joe, and they exchange phone numbers – promising to contact one another that week.
As Maurice gets into the car, he leans over and squeezes his wife’s hand. She looks up and he knows that she is aware that he is saying thank you.
He feels for the first time in a long time, that there may be hope. He doesn’t feel so alone anymore. He decides to go back the next week.
The next five weeks fly by, and week after week, Maurice starts to understand that learning how to manage simple daily tasks can impact greatly on the way he thinks. The dark cloud starts lifting from his shoulders and he finds he is more motivated. He stays connected to Joe. They do their Action Plans together – going for a short walk, three days a week in the mornings when their wives are at work – they sometimes even change their plans when the weather is bad, or when they’re having a bad day and instead go to the local coffee shop or visit each others homes.
At the end of the course Maurice does not feel he is a “label” anymore. He understands that his condition is only one part of who he is, but it doesn’t define him as a person. He starts taking control of his medications and talks to his GP about reducing his anti-anxiety medications.
Decides that he might take up counselling after all.
His last Action Plan is to find an old movie and to have a “date night” with his wife. He gets into the car on the final evening of the course, looks over and winks at his wife. She smiles…from her eyes. She knows now her old Maurice is coming back.
So why has Maurice changed so much in such a short period of time – what are Self Management courses all about?
Well, I myself am a volunteer facilitator of Stanford University’s Chronic Disease Self Management Programme, which is just one of the many courses available – but one which I find extremely effective.
This course is designed to enhance regular treatment and disease-specific education such as cardiac rehabilitation, or diabetes instruction. In addition, many people have more than one chronic condition. The program is especially helpful for these people, as it gives them the skills to coordinate all the things needed to manage their health, as well as to help them keep active in their lives. The program does not conflict with existing programs or treatment.
The workshop is given two and a half hours, once a week, for six weeks, in community settings. People with different chronic health problems attend together. Workshops are facilitated by two trained leaders, one or both of whom are non-health professionals with chronic diseases themselves.
Subjects covered include: 1) techniques to deal with problems such as frustration, fatigue, pain and isolation, 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 3) appropriate use of medications, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, 6) decision making, and, 7) how to evaluate new treatments.
But most importantly, it is the process in which the program is taught that makes it effective. Classes are highly participative, where mutual support and success build the participants’ confidence in their ability to manage their health and maintain active and fulfilling lives.*
What I love about this course, in particular, is the fact that it is not disease specific, but more focuses on the needs – it helps people remove the labels of their conditions and focus on themselves holistically, as people. There are, of course, specific disease programmes available also but I feel these are best done after the general workshop, as these can help with the technical issues arising from managing medications, treatments or services specifically for conditions such as Chrohns disease, diabetes or arthritis, for example.
Carers can also attend these workshops, which I find most important – often the carer can suffer depression, isolation and anxiety too.
I highly recommend that all patients and carers be given the opportunity to avail of these courses, as recommended by health professionals, at the point of care. They are based in local communities, and many people, just like Maurice and Joe, get to meet new people who understand the difficulties of having a long term condition. It can be life changing for so many.
It can be life changing for a whole family. A whole community even.
When patients participate in these courses it can also be extremely beneficial for health professionals. They can save health services time, money and resources and by reducing depression or breaking symptom cycles, for example, this can reduce copious amounts of unnecessary health care appointments and the prescribing of many unwanted medications.
I for one, as a patient and carer, love being a facilitator of this programme – I see so many people come in looking scared, anxious and dubious – and then leaving just six weeks later smiling, hopeful and aware. (It’s also an extra little bonus when many of the participants give us chocolates just to say thank you at the end of the course – though not so great for the waistline I might add!)
There is something very special about helping others – you always learn something new yourself along the way that you can use in your daily life – and you make so many new friends too.
So to answer the question as the title of this blog suggested – Self Management courses are not about the paper they are written on – they are about the process in which they are delivered.
Self-Management is not about sickness – it is about holistic self care. It is about kindness. It is about community.
It is about life.
There are many courses available in Ireland, such as the one I facilitate with. Please go online or ask your health professional for further resources.
*Abstract [altered slightly] from http://patienteducation.stanford.edu/programs/cdsmp.html on the 27/08/2016
**Names of characters used are fictional – they just aim to help tell a story that many relate to
Patients and carers across the world are constantly coming up with new ideas in relation to the management of medications, achieving daily tasks with limited mobility, tracking symptoms and even finding ways to remember medical information. I myself even came up with the MediStori – a personal health organiser – while caring for my dad who was on 22 medications!
And this last week, for us, it was no different.
This time, however, it was not because of one of the many chronic conditions each of my daughters have – it was simply because my youngest daughter had slipped on a path, and upon going to the Emergency Department we were told she had ended up damaging the growth plate in her little ankle. Upon learning of same, 10 year old Mackensie was brought into the plaster room; a lovely nurse explained everything that was happening to her, and a cast was put on. She was given little crutches to walk on.
Sound serious? No, not at all – especially in the greater scheme of things.
Yet, over the next few days we found out the complications that come with the joys of having a cast and crutches combined – and along with the fact that she has a condition called hypermobility – poor Mackensie was finding it extremely difficult to do just simple day to day tasks.
All of my creative brain had to kick in to help her feel “normal”.
- The first issue was her hands. After just 15 minutes of using the crutches her little hands became red, swollen and chaffed. All of the pressure was going down on her hands to carry her full body weight as she lifted her entire body for every step she took.
Solution 1: Get soft bandages and wrap them around the handles of the crutches.
Result 1: The bandages wore down in no time at all and chaffed her hands even more.
Solution 2: Cover the handles of the crutches with slipper socks.
Result 2: While they were soft, their bulkiness widened the span between her thumb and forefinger, and with having hypermobility, this caused more pain in the tendons and ligaments in her hands.
Solution 3: Ask my friends on Facebook!
Result 3: I was told to use the wrapping for Hurley sticks – but this too caused chaffing on her hands – much like the bandage did.
Solution 4: Ask the pharmacist!
Result 4: Get pipe insulation – now, this at long last, worked a treat – and was cheap too!
- The second issue was the stairs. An easy task for most but when you add a heavy cast and crutches to follow – not so easy!
Solution 1: Go up the stairs on her bottom.
Result 1: She found it difficult as she had to put more pressure on her hands while lifting her full body weight for each step.
Solution 2: Go up the stairs on her front.
Result 2: Both her legs would bang off the steps as she moved up each step, causing bruising.
Solution 3: Hop up the stairs on her good leg.
Result 3: This caused pain in her right hip – where her hypermobility affects her the most – and we were afraid she’d fall.
Solution 4: Have mammy or daddy lift her legs as she went up the stairs backwards.
Result 4: Even though this was the solution which worked the best, as it eased the pressure off her hands and hips. – Mammy and Daddy were both wrecks from trying to carry crutches while lift her legs at the same time – and her independence was taken away from her.
- The third issue was bath time! Wrapping up the cast in plastic bags and sealing with cling film was the easy part, but we still could not submerge that leg…
Solution 1: Bring a small stool (or stepladder as we did!) into the bath and have her sit in the bath with leg elevated.
Result 1: Her leg got tired from being lifted AND as she is of the age where she doesn’t like anyone to see her “in the nude” anymore so we also had to put her swimsuit on, meaning she didn’t get a proper wash.
Solution 2: Sit at the side of the bath with her head over the bath to wash her hair.
Result 2: Her neck got tired easily and again, she wasn’t getting washed properly.
Solution 3: Bring a chair into the shower, along with another chair outside of the shower to elevate leg.
Result 3: This worked best (even if half the bathroom got soaked!) But again, her independence was taken away from her
Now these were just the top three issues – we also had to find ways where she could open doors on her own; brush her teeth while balancing on crutches and the joys of having to keep the crutches standing together and not fall over when she sat at the dinner table. We had to find ways where she could carry things in her hands while using the crutches – and with school starting next week I’m sure we’ll find more fun things to get innovative with!
So, I suppose my question is – why are devices, like crutches, not built with the patients whole needs in mind?
Yes, they serve the purpose of keeping the weight off the injured leg, but they do not help with other issues that are part of daily life – and they put weight and strain on the rest of the body. Additionally she needed more pain relief for her tired hips and creams for her sore hands.
Also she is lucky that she is a child – and has us, her parents, to care for her – what happens with the poor adults who are living on their own?
Researching online showed me there are such innovations available across the seas – but they come with a high cost – and with her more than likely going to be taken off the crutches in a few weeks time – this is not something I am going to invest in (though I am still really tempted!)
I really feel our health services should invest in these solutions – not us, as patients.
- A helpful booklet could be given to patients with ideas on how to do daily tasks – not just outlining what NOT to do
- “Insulation” type covers given at the point of care for the handles would help ease the pain on hands
- Giving out a waterproof cover for the cast would prevent patients having to come up with ideas all on their own
- Having a little bag which attaches to the crutches could help people carry items with them
- A simple little elastic could “stick” the crutches together temporarily so they don’t fall over, or fall apart
Or even better health services could research new crutches which aide in even distribution of weight, and then invest in same!
Yes, the pink cast makes having a cast more fun but this is only a short lived experience – the real experience is just trying to get on with it!
So have you ever had to be innovative while being a patient or carer – or even a health care professional?
If so, I would love to hear your stories…
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!)
[This blog was created on the June 6th 2015]
This is how I told my story at Heart Children Ireland’s National AGM…
“Hi my name is Olive, and I am a mum of three girls; Micaela Nicole and Mackensie. I was going to tell my story spontaneously , but every time I practised doing it this way, my emotions took over and I forgot where I was, so today I am going to read it out to make sure I don’t skip over anything.
We, as a family, come up to Dublin quite often as each of my girls see different specialists in Crumlin, including their cardiologist, Dr Coleman. Thankfully they’re all doing great at the moment but it wasn’t always that way. About a year and a half after my youngest girl, Mackensie was diagnosed with her congenital heart defect, I was diagnosed with Post Traumatic Stress Disorder.
Now I know you’re just in the door and probably wondering why are we starting with such a sensitive topic but we felt it would be good to do it now just in case any issues arose and people could chat to each other or ourselves about it at lunch time. Deirdre, our psychologist is thankfully here today also and is happy to talk to anyone that wishes to do so.
I myself am here today in the hope that my story can help others. I wish that another parent had told me back then that we all react differently to our situations, that it was okay to feel the feelings I was having , that I wasn’t alone and that that there was loads of help available out there for when I was ready, not just to talk, but to even admit something wasn’t right.
So here we go: before Mackensie was ever born I was worried that things might not be okay. I couldn’t say what exactly was wrong but my gut was telling me to stay alert. Anyway the labour was difficult, it took what seemed like a lifetime for her to cry and she wasn’t as pink as my other girls had been when they were born. I was worried but was told over and over again she was fine and that I probably just had the blues. So we went home but my anxiety rose as she couldn’t take her bottles for a very long time at a go, was sleeping nine hours at a time and wasn’t gaining weight. I brought her to A&E three times before she was twelve days old but both they and our health nurse at home said that it was me -that I just over-anxious, had possibly got post-natal depression and even that I was molly-coddling her. But something inside me told me something wasn’t right and so I fought my corner on the last go and eventually got her admitted. The next morning we were told that she had a slight heart murmur but they still sent her home to await an echo for six weeks’ time. Straight after being discharged I brought her to my GP (who was back from his holidays) and he knew something was seriously wrong. So he picked up the phone and sent her straight to another hospital which was where we were told she had three holes in her little heart and that she would need to have heart surgery in Crumlin.
In a state of shock and panic, when we got the call up the next day, I ignored my gut instinct and instead took advice not to upset my other two daughters by saying goodbye to them. And so we just left, just like that. The poor little things, trying to adjust first to a new baby and then mammy, daddy and baby just disappearing. When we got up there I felt so bad for them and I wanted to ring them all the time but I was afraid I was going to upset them. I missed them so much but couldn’t say it out loud because I knew I had to stay strong.
So in this tiny cubicle on St. Theresa’s ward we stayed; staying strong and hoping, praying and wishing without realising how long we would eventually be staying for. I had to stay strong before her surgery, during her surgery and after her surgery. The two things that stick out clearly in my mind were getting Mackensie baptised in this little cubicle before her surgery and having to learn how to do baby CPR on her before we got home.
It didn’t take long to meet other parents in the parents room, and it was surreal how we all learned the lingo quickly and were able to talk like doctors and nurses: conversations would go anywhere from discussing surgeries, types of heart valves to tube feeding and medications. But on the inside we were all feeling different emotions at different times; we were so tired, we were scared, we were frustrated and even sometimes guilt ridden – was it our faults our babies were sick, how are the other kids at home, how will we manage financially, why did this happen to us, why amn’t I worrying like all the other parents are? Our worst days were if a baby had lost their battle. No-one wanted to look at each other in the eye, because the fears and pain were too raw. And we had of course, to stay strong.
The day before Mackensie’s surgery, a great friend of mine now, that I got to know because her little baby girl was there, decided with my husband not to tell me about a little baby that had died that day, as she knew it would terrify me.
And she was right, it would have.
We eventually got home after a long six weeks stay and I soon realised very quickly that my safe haven of Crumlin was gone. I remember panicking on the first night because I wasn’t sure if the nib in the syringe actually counted as a milliletre of Frusomide or not! I worried about who would be able to mind Mackensie if I got sick. I had lost trust in so many people because of the so many battles I had initially to get her diagnosed and because my husband and other family members believed the doctors too at that time and not me, I had lost trust in anyone else to mind her or my other girls too. I was so scared being so far away from the security that if anything went wrong we didn’t have specialists to hand.
I soon learned a few months later though in one of the fastest journeys of my life those ambulances can get there fairly rapid if they need to!
But I also realised I didn’t have the security of the parents in Crumlin to talk to. I remember one day when we had to be moved to another ward temporarily it had made me so upset that the kind nurse moved me back. I was so lonely and missed everyone so much that I needed the security of St Theresa’s to keep me sane. Back home I knew that people were trying to be positive by saying that “she didn’t look sick at all” or that “sure she’d be grand”, but I used to feel like screaming at them because I had so many fears for her future.
And then my lovely friend that had protected me from my pain, before Mackensie’s surgery, rang me to tell me about her pain.
Her beautiful baby girl had died.
Words cannot describe the hurt, pain and utter heartbreak. My friends had lost their only baby during heart surgery. It was just so, so sad. And frightening.
So you would have thought after that a few months later, when we were told Mackensie wouldn’t need her next open heart surgery that I would have been so relieved and happy.
The silent fears suddenly came to a head. I went home, I closed all the blinds in the house, turned off the phone and for three days solid, I cried.
I had no idea what was happening to me and I felt so, so guilty. Why was I crying? Did I want my baby to be sick? What was wrong with me? I couldn’t talk about it to anyone because I felt like such a bad mother and my anxiety started getting worse until soon I couldn’t tell the difference between my gut instinct and worries. I didn’t want anybody to mind the girls and I started staying in, even quitting my job in the midst of it all. It all came to a head one day when I couldn’t get my husband on the phone and I had convinced myself he had been in an accident. One of my closest friends, Linda, came in to the house to calm me down and it was that day that I knew, I needed help. Because of my anxiety issues around the girl’s safety and that I may not hear them at night I refused anti-depressants or sleepers, which probably would have been a great help, so instead, I sought out counselling.
The first day was the hardest; my counsellor was sitting talking to me and I suddenly heard an ambulance in the distance. I made a bolt and just jumped out of my seat and ran out the door. He ran after me not knowing what was wrong and I explained that I felt something was wrong at home – he reasoned there and then that I would be quicker on the phone if I rang, and I did. Of course my poor husband, Fintan, asked why was I not in counselling and I told him about my fears. So for the first six months of counselling, I sat with my phone turned on, the door left ajar and the promise that Fintan would ring me if anything was wrong.
So, for the next two years, every Monday night, I met my counsellor.
And it saved me. It saved my family. It saved my marriage.
I will never be the person I was before Mackensie was diagnosed but to be honest I wouldn’t want to be. I still do get the odd twinge of anxiety every now and then, but I now have the tools to cope with it and so much more now. And I know blaming hospitals or anything else for that matter does not help…it only builds up the anger inside. Being proactive and making wrongs right does help though and it is this reason why I am sharing my story with you.
Recognising you may not be okay is the first step. For me it was the anxiety, anger and guilt but for others it may be the complete opposite. Talking is the next step. Talk to a friend, family member, GP…you may be surprised that they already know that you are in a bad place. Next get help – figure out which is the best way for you to get treatment by talking to your GP or psychologists like Deirdre. Know that the reason you are feeling this way is because you are trying to stay strong in a really stressful situation and sometimes when the calm after the storm comes, the real storm is only starting for you. My counsellor always told me not to be too hard on myself and I’m here today to say the same to you guys – Go easy on yourselves, know it’s ok to feel the way you’re feeling and talk to one another.
Thanks so much,
A few weeks back, myself and the hubby decided we’d take a much needed break from all the running around in work and so on the Friday, we jumped in the car with the kids, not minding the oncoming four hour road trip because we knew we’d be able to relax at the other end of the journey. Upon arrival, I was in great form to see our beautiful holiday destination but as soon as I started to get out of the car my mood took a bit of a downturn- my good old knees started giving out their usual creaks, which were then immediately followed by darting pains up my legs.
Now I know at 34 years of age, I am younger than most to suffer from psoriatic arthritis, but to be truthful, I have learned not to let it get the better of me. I have also learned that the best way to prevent a massive build up of pain is to take my medications as soon as I get the pain – and not wait until it’s too late! So off I went to the boot to get my medications out of the bag, only to realise to my dismay, that I had forgotten to bring them with me!
Immediately, I started panicking. How would I get through the weekend with no pain relief? And as soon as I started thinking about how I would access the medication that I would need, I started getting anxious.
Was it because I had no prescription? No.
Was it a drug I couldn’t get as it had to be ordered in advance? No.
Was it a Sunday and the pharmacy were closed? No.
So why the panic?
Because the drug I use to help give me pain relief is a well known and well advertised over the counter medication, commercially known as, Solpadeine.
(If you’re a pharmacist or have ever tried to buy codeine based drugs recently you will now know why I was concerned!)
So I found myself en route to a nearby pharmacy and just as I got out of the car, my husband seized the moment and quickly asked would I pick up a packet of cigarettes for him in the shop beside the chemist. Now he knows I hate the thought of him smoking considering he had a stroke only one year previous [aged 42] but I reluctantly agreed because to be truthful I wasn’t going to start nagging about it while we were on our much needed break away. And I was already anxious and in pain so I didn’t need any more unnecessary tension!
Sighing as I got out of the car, I decided to face my fears and chose to go to the pharmacy first, with that usual thought in my head “brace yourself!”
I knew I was going to get bombarded with personal questions, and only if answered correctly, would the transaction then be completed with the complimentary delivery of an educational safety lecture on the risks of codeine. I continued to wait in the queue, and the more I started thinking, the more my palms were sweating; the more my heart started racing, and the more I started thinking of what to say to the pharmacist.
I honestly stood there feeling guilty of a crime; that I hadn’t committed.
I started thinking would I just ask for paracetamol on it’s own because so many people are given this long term and with no hesitation. But I knew it wouldn’t have the same effect on the pain. Anyway, with paracetamol being the most dangerous element of this drug combination for my liver, wasn’t the codeine just putting on an additional risk for me getting possibly addicted, becoming irresponsible and overdosing on same?
Thinking about this, I knew myself well enough to know that I would never put my life at risk and so vowed to follow through on my request for pain relief.
As I got to the top of the queue, a young bubbly member of staff came over to me. I smiled back at her but I knew her expression was going to change quite drastically when I requested my choice of pain relief.
I was right.
Her smile disappeared, she lowered her tone and got very serious as she asked me what I needed it for. Other customers quickly looked away, but noticeably, still listened in. It was in this moment as she asked me politely what I needed it for, I felt the presence of societal judgement come upon me and without thinking, I blurted out – “It’s for my period!”.
It was now this poor girls turn to look away in embarrassment and she quickly mumbled the standard warnings that she was taught to deliver to customers who requested codeine based medications. As she took them out from underneath the counter and put them in a brown bag for me, I really felt awful for both her and myself for having to go through this process just to ensure that I firstly wouldn’t have pain over the weekend and secondly wouldn’t die of liver failure in the process. She was only doing her job.
I honestly hadn’t meant to embarrass the poor girl – I just wanted to get out of there as fast as possible and I knew I had reacted this way because I was simply embarrassed. I quietly thanked her, paid her, said goodbye and turned to leave.
At this point, I then remembered that I had to go to the shop for my husband to get his cigarettes. Filled with relief that that ordeal was over, I walked over to the shop and calmly asked the shopkeeper for 20 Purple Silk Cut.
She then handed me my change & casually handed me one of the most lethal drugs ever created – without query, question or caution.
As I walked over to the car, it hit me that something was not right about what had just happened. Upon walking into the shop, I recognised that I had no fears about asking for the cigarettes – knowing the most I’d get asked about was the weather (unfortunately I don’t get asked for ID anymore!)
Yet, in the pharmacy, for pain relief, it was a completely different scenario.
There and then, I wished the shopkeeper would question my husband every time he had to get cigarettes, the way the pharmacist had me, for codeine.
While both nicotine and codeine are highly addictive substances, this is where the similarity ends.
One has some medicinal benefits.
The other does not have any medicinal benefit.
One is advertised on television and radio.
The other is not allowed to be advertised anywhere.
One, taken as directed, does not put one’s life in danger.
The other, no matter what dose, puts lives in danger, always.
As with all drugs – there are risks. But with some, especially those which have no medicinal benefits – the risks can be detrimental. Cigarettes have to be one of the most fatal drugs on the market, with no proven medicinal benefits, and yet people still choose to smoke. Even after all the packaging is removed; all the advertisements are taken out of shops; the ghost of a kind and brave man, Gerry, talks about the terminal effects cancer has on him and his family – people still choose to smoke.
What drastic measure is it going to take to actually change the behaviours of a smoker?
What would happen if a shopkeeper put a customer through the same rounds of questioning for codeine – every single time they went to buy cigarettes?
Shopkeeper…[changes expression drastically and asks in low tones…]
“Do you know why you’re smoking?”
“Do you know smoking can [and now choose depending on customer…]
- Give you bad skin, hair , nails, teeth
- Makes your clothes and breath smell bad
- Take 10 to 15 years quality years off your life – breathlessness etc.
- Increase risk of life threatening diseases like cancer, infertility
- Have a poorer quality of life, fitness and health
- Be a bad role model for your family and friends/children
- Cause you to go without nice things because you waste money on cigarettes
- To lose control over your life – smoking can dictate your daily routine.
- Increase the work you have to do to keep your home and car clean.
- Decreases the quality of the air in your home for your family and friends
- Reduces self-esteem/ impact on how you deal with the daily stresses of life.
- Make you die before you’ve done everything you’ve wanted with your life
I’m sure the shock factor if this did happen would be astounding.
I can tell you, if people were asked these questions every time they went for cigarettes, they would soon start reconsidering their requests – like I had done. The feelings evoked in me that day – embarrassment, guilt, fear – were very negative and I definitely would not want to go through it every single day.
But I completely agree that it is the right thing to do.
Every person taking any addictive substance that can potentially lead to long term side effects or cause irreversible damage, should be advised to on it’s possible dangers. The pharmacists have our best interests at heart and that lovely staff member was doing her job, the way she was taught.
But I do not feel that this should just be limited to codeine or similar drugs in pharmacists – it should be implemented in all substances (especially those with no medicinal benefits) such as alcohol and cigarettes.
I believe if our nation were truly behind the challenge to create behavioral change in smokers – this method could be an option.
But in the real world, when there is the possibility of money to be lost locally or nationally, the challenges to create change in this area are nearly impossible. I think, even if a business case showed significant financial/time/life savings for health services due to a reduction in tobacco related illnesses because of an initiative like this, that it still would never happen – even if the savings were higher than turnover of sales of tobacco!
I do think there is a lot being done to tackle the smoking issue but I truly feel a lot more needs to happen. I am now nine years off the cigarettes myself and it took a lot of effort for me to give up. My husband was forced to quit last year after his stroke, but unfortunately it was just too easy for him to start again.
And I would like to see this changed.
I don’t know how it can be done, but I do know, that if you make someone feel guilty, embarrassed, afraid, sad or irresponsible a lot of the time they will want to stop associating with the thing that caused it in the first place.
As for my choice of pain relief – I never promote codeine to anyone as a first choice of medication – it is highly addictive substance. I do however always promote the fact that we should always take our medication as prescribed, and on time – and not wait until the pain gets so bad it can’t be managed efficiently. I will always also promote the conversation between patients and health professionals about their medications and whether they work or not.
Pharmacists and other health care professionals are there to help us, not make us worse. But we have to be honest with them, to help them make the best decisions too.
There are of course so many more treatments that don’t involve medications at all and I would look into these too – I myself attend and run self management programmes for instance, and they can help put us in different mind sets about our pain or chronic conditions.
At the end of the day, we’re all here to either get better or help get someone better, and so we all must play our part in being part of the solution, not the problem.
For more information on quitting smoking: https://www.quit.ie
For more information on codeine: http://www.thepsi.ie
[Note: For any medical professional /patient who may want to know why I take this drug. For me, codeine and paracetemol taken together works better than anything else I have tried. As well as my arthritis, I also suffer from long term bradycardia and asthma. Unlike my children, who take Methotrexate and Naproxen for their own Juvenile Arthritis, I am much more limited in what I can take. Many of the heavier arthritic drugs like Arcoxia, just make me feel way sleepier than codeine does (bradycardia already causes this!) and it can’t be taken with my angina. Anti- inflammatory’s cause me to be wheezy. Because of this, we found a treatment that works – I get steroid injections into the joint from my rheumatologist, as the need arises, and I take codeine with paracetemol [i.e. Solpadeine], if required, 6 hours apart, twice a day at most- thus providing all the relief I need, without having any diverse side effects that impact on my daily life in a negative way. This combination works for me, right now, but I do not promote or recommend it to anyone else – each of us are individual and that’s why we need to talk to our health professionals about same!]
With hundreds of health events being launched every single day across the world, I often hear people say, “Oh, conferences – they’re just a money making racket” or “Health professionals feel they have to go to them, to earn learning credits”, or “They’re just excuses to get out of work and go out on the town afterwards”. Often when I talk to patients like me, they tell me that the topics of discussion at health conferences and such, can often be too “disconnected from reality, from a users perspective” or that they don’t benefit personally from such events . Well, after listening to all these type of comments and opinions for the last few years, I’d like to try change some of the mindsets about health events, conferences and summits.
From a patients perspective, and using the World Health Innovation Summit as an example…
A summit has been defined as bringing together people from “the highest attainable level of achievement”. A world summit brings these type of people from across the globe together in one place, and a world health summit brings together, on one platform, these people, who are working in the fields of healthcare. Innovation has been said to be crucial to the continuing success of any organisation and is defined as “the action or process of innovating” or “a new method, idea, product or process”. It showcases these innovations in healthcare, created and led by people whom have the highest attainable level of achievement in their fields, as proven by their peers, which will be showcased exclusively, together, at the World Health Innovation Summit.
In every way, the World Health Innovation Summit does exactly what it says it does.
As a patient myself; carer to my husband who had stroke at 42; and mum to three daughters whom each have had complex chronic conditions, I have seen everything in health services – from good examples of care, to not so good, to downright dangerous. I personally struggled with the self-management of our little families health needs until one day, by accident, and when caring for my dad who was on 22 medications, I developed a very simple toolkit to help me, as his carer, and him, as a patient, manage medications, health information, communication and appointments.
Little did I know, three years later, how much of a difference my little toolkit, the MediStori would make, to not just my family, but patients, families and health care professionals right across Ireland.
So what has this got to do with conferences?
Well, I have always said from the beginning, that I only take credit for the concept of my project, but I never take credit for the finished product, or in the way in which it is delivered to patients. This, I can openly say, is down to the many, many people I have met along the way, who inputted into it’s design and development. I can also say that I would never have met most of these people if it weren’t for the conferences, events or workshops of which I attended. While I was always made feel most welcome at these events, a lot of the time I often felt a little over my head or out of place, because I was the “patient”. I would regularly think that “I don’t fit in” with all the health care professionals and big pharma companies. Quite often I really wanted to comment on some of the stuff being said by the speakers, but didn’t feel confident enough to do so. Eventually, I found some other patients like me at these events and it wasn’t long before I realised that they often felt the same! So I started getting braver and in 2014, I took my first plunge – I stood up at a national conference which was being globally live-streamed; I took a mic and I put a comment to the fantastic innovator Ms. Helen Bevan. She was very engaging and I got a huge applause for my statements, so needless to say, I have never looked back.
Since this day, both I and many of the health care professionals in that room that day, connected.
I was told how hard it was for health professionals to find innovative and interested patients and carers who wanted to work together to improve services. I thought this was amazing as there were so many patients in the service, but realistically this made sense, as how could anyone ask a sick person to join a working group or a new initiative? It was really up to the patient or carer to put themselves forward. I told them how hard it was for me to attend conferences as they cost so much money and that a lot of the time, unless I was a company, charity or health care professional, I couldn’t attend. It seemed that we were all trying to find one another, to help create positive change, but had no signposts to guide us!
And so when I spoke to the Founder of the World Health Innovation Summit, Gareth Presch, I knew that he was onto something very special when he discussed a global platform for all health innovators. On this, I not only decided to support the World Health Innovation Summit, but was delighted then to accept the offer of being part of it’s international team. This summit, for me, summed up how to practically address the “Three C’s” – Collaboration, Communication and Community. It simply aimed to bring everyone involved in healthcare to one platform – to share and learn from one another, with a vision to work together to create the positive culture changes needed in health services across the globe.
As a patient, I felt I was now part of the solution, and not the problem.
So what makes this Summit so unique…for me, as a patient and social entrepreneur?
- #WHIS is a community interest company – meaning, after costs, all profits made are put straight back into the local community of which the summit is held. #WHIS is a true social enterprise!
- #WHIS is a community focused initiative – meaning there is not just one summit per year in one country – these summits can be held anywhere in the world, a number of times a year – by anyone involved in healthcare! The #WHIS team support communities to achieve this.
- #WHIS is open and inclusive for both speakers and attendees. It brings people from EVERY area of healthcare together – patients and carers, health care professionals, managers, administrators, families, businesses, social entrepreneurs, innovators, experts by experience, non for profits…anyone who is interested in learning about what is happening in the healthcare arena across the world.
- #WHIS is for those who want to be part of it – the only “credits” given are that of thanks to all involved and those who attend. The positive outcomes from #WHIS will be the learning from one another.
- #WHIS is led by an international, diverse and inspirational team of health innovators who want nothing else but to make our world a better place. Person by person, village by village, country by country. This network is already there, it’s just a matter of joining the dots and collaborating.
So have I changed any of your thinking about the benefits of going to inspirational events, like #WHIS?
The first of the World Health Innovation Summits global series kick-starts in the UK in the beautiful city of Carlisle, Cumbria, March 10th and 11th of this year. It will showcase inspirational people (including yours truly!) who have been working so, so hard to improve health services either personally, locally, nationally or internationally and who are willing to share their experiences so that a global audience can watch, hear and learn from those who have already met the barriers, challenges and successes in creating positive change in healthcare.
These people, and I, only want what’s best for patients, carers and everyone, in healthcare.
If you think you are a person who is a true collaborator and only wants the best for patients and health services personally, locally, nationally or internationally, then I invite you to join us on our journey, because in reality, we will all be users of our health services one day, and we will all have one aim – to either get better, or to help someone get better.
Looking forward to meeting you all in Carlisle,
Join the Conversation:
When I was told that this particular get together was focusing on an initiative called the “Lighthouse Project” my first thought was – “I can’t wait to see their projects!” and this was immediately followed by – “I wonder how the audience, who are working on much needed electronic health records in Ireland, will react when I tell them I developed paper based health records!?!”
I also thought what an appropriate name for such projects – I thought of being a sailor out to sea for weeks on end, and the feeling he might have upon seeing the first light shining across a powerful ocean that could change it’s mood at any given time – much like a chronic condition. This light must signal hope, reassurance, security, safety. And it was universally recognised.
Yes, what an appropriate name for projects that would sit within a national recognised electronic health record system. The Lighthouse Project.
So before I go into the actual days events, first let me explain who I am and why, I feel, I was asked to speak on the day. My personal journey is one that most patients and carers still resonate with today in Ireland.
One cannot know how to solve a problem, unless they know what the problem is.
I am Olive. I myself am a patient, a carer and a mum to three beautiful daughters who have each had different complex health conditions. But it wasn’t until a few years ago, when also caring for my dad who was on 22 medications, I had no choice but to develop my own little booklet to help me manage his multiple medications, appointments and health information. This was because when I asked the registrar in the hospital did he have anything which could help me with same, he apologetically said he didn’t, but kindly suggested that maybe I could go online and look for an app, or maybe try the pharmacy. As I sat there on the side of my dads bed, worried about how I’d cope when we got home, I realised, not for the first time, that there was no Wi-Fi in the hospital. When I got home that night and went on my PC I then found that there were over 40,000 medical apps available – how would I know which one to use? I didn’t have time to pick one, never mind learn how to use one! So the next day, on the day of my dads discharge, I went to the pharmacy and they offered us a great solution called a pillbox. But it was only as we went through my dads medication list with the pharmacist , did I realise that this little pillbox would unfortunately not be able to help us manage the drugs which were in liquid, gel, inhaler, injection or powder format. It also didn’t address the issues such as his appointments or health information. Nor did it educate him on the “why” he was taking his medications, and what would happen if he stopped. And so I felt a need to develop this booklet, not just for him, but for me, as his carer. I needed something to help us all, as a family, to better self-manage his health needs, communicate to one another easily, and also to his health care professionals regarding his medical history. I just wanted my dad to get better.
So roll on four years. The same problems still exist. But I was trying to fix them.
I found that this toolkit had also been a great help to health care professionals and the more I asked people about it, the more positive feedback I got. It eventually got to a stage where I felt it was ready to be validated and so in 2015, it was externally evaluated by NUIG through two national hospitals and eight national charities, as funded and supported by the HSE.
And the results were phenomenal.
Every single patient who had completed the study wanted it rolled nationally.
But was that the most important outcome in all of this?
For me, it wasn’t.
For me, it was the way in which it was developed, designed and delivered with all stakeholders involved in each process, which was the key learning.
And that is why, I felt, I was asked to speak at this event.
Because the eHealth Ireland Ecosystem does exactly the same thing – it develops, designs and delivers its solutions, with all stakeholders together.
It was this that became immediately obvious to me upon arrival in the beautiful Ballsbridge Hotel last Tuesday morning. Just after I registered, I walked into a room that was so full of energy and enthusiasm, that I became nervous – I didn’t want to bring down that mood!
Everyone was buzzing. Like, I mean, everyone.
People seemed relaxed, no-one was eyeing anyone else up and as I walked through the crowd to figure out where I should sit, I was greeted with positivity. I knew everyone in that room, wanted to be there.
It was refreshing.
And daunting. I now had to deliver the goods!
I flicked through my presentation. Forever aiming to have an unbiased viewpoint on the topics on hand, I didn’t go to the eHealth Ireland website first for information – I went to my best buddy Dr. Google. I looked up the definitions of “eHealth” and “Ecosystem” separately, and then as put together as one term. I thought this would be an easy find, but amazingly I found one paper from 2005 showing over 51 definitions of the term “eHealth” and there were over 50 million searches on the term “Ecosystem”!
So I knew before I even arrived on the day that the only way I’d truly know what the definition of an eHealth Ecosystem was by finding out for myself – and I’d just have to be there, to see what it was they did that was different to others!
Bang on time at 10am, Richard Corbridge opened the meeting with over 200 delegates and went through the days agenda. He highlighted the importance of working together and that a national integrated electronic health record system was in the best interest of everyone involved in health services. He gave short descriptors of the Lighthouse Projects, and then, before taking his seat, he took a quick glance down, smiled and introduced “his good friend, Olive” to the stage.
Ah, panic stations! How do you follow the CIO of the HSE!?!
I took a deep breath and off I went.
Now as you got a brief glimpse of what I do already, I’m not going to delve into any more detail about what I presented (and truthfully, I kind of go blank afterwards, probably due to nerves haha!) I did however get to capture some of the slides from the Twitter feeds on the day by searching under #eHealth4all if you want to see some of it [see attached video below]. And so, it was from both this Twitter feed and the energy in the room that I found the audience extremely engaging and supportive.
It was so obvious that everyone was so willing to learn and work together. I had had nothing to be nervous about. I now could breathe again. I sat back looking forward to learning about the Lighthouse Projects and who they would help.
I learned of a little boy who had a debilitating form of epilepsy which took a million dollar technology to eventually diagnose.
I learned of the daily struggles patients with hemophilia go through and why open data was so important to them.
I learned about the difficulty in storing and communicating health information for those who have mental health conditions, such as Bipolar Disorder.
I listened. Once or twice, I found my breath catching as I resonated with similar situations, even if I had not had the same conditions.
Each of the teams, Dr. Colin Doherty, Epilepsy; Dr. Barry White, Haemophilia and Mr. Mel McIntyre and Dr. Seamus MacSuibhne, Bipolar Disorder showcased their solutions, and they talked about the barriers to same. They were all open, honest and ready for the challenge. They were all willing to work together, not only with each other, but with everyone in the room.
I was in awe of the work that had been done. The thought that was going into each project. And the people who were involved in them. But it didn’t stop there.
We were asked after each of these presentations to pick one of these projects to give feedback on, and each had a number of tables with different topics to be discussed. I picked Bipolar Disorder and we were to discuss confidentiality and consent. This was all facilitated in a way in which we all got a chance to speak and express our opinions. And this was a tough topic to discuss!
I was learning so much! Not just about the issues, but about how this was all being done.
We were then told that during the lunch one of the team members would be summarising of all of our findings from the focus group sessions – in the short span of over 30 minutes and over two hundred peoples opinions!
I didn’t think this was possible!
But it was.
Richard went back up on stage and he proceeded to read out the findings from each of the teams, asking each group to clarify on any areas of which seemed grey. We were all given a chance to speak.
I have to say, I didn’t expect this. It was truly an active listening group.
And this was the moment when I knew what an eHealth Ecosystem was.
For me, the eHealth Ireland Ecosystem is exactly what “healthcare” should be – a partnered, proactive, personalised and practical environment, with patients at the centre of all it does. It was refreshing for me, as a patient and carer myself, to be in a space where everybody had their say. There was nobody in the room who didn’t want to be there, and all wanted the same outcome – to help make our health service the best it can be, with technology as an enabler, and people as the engagers.
Okay, so it’s not the definition that you might find on Google or in an academic paper, but it is one patients perspective anyway. It is my perspective.
And I for one, am now delighted to be part of such an exciting initiative so thank you all in the eHealth Ireland team for having me!
Watch a little slideshow I put together of eHealth Ireland Ecosystem Twitter Feed Pictures here – [Be sure to tag yourself or your buddies!]
Please also check out http://www.ehealthireland.ie as there are many initiatives seeking public consultation that you can input to!
As I came in from another long day at work, my three girls (and three dogs, I might add!) all came running at me – just before I got a chance to glance at the post that had arrived that day.
After seeing their happy faces and hugging them tightly, I felt so reassured that they were so happy, and that yet another day had gone by where I had gone to work and that they were still okay by the time I got home (don’t get me wrong my babysitter is amazing – it’s just a thing I think all moms have a little anxiety about from time to time when they leave their kiddies all day with someone else!)
Anyway, my kids (and dogs!) quickly forgot about me as they knew it was near to bedtime and so they scarpered off to get in their last few minutes of play and television watching. It was then that I took the opportunity to give my attention to the mail, as I had noticed that one envelope had a stamp from my children’s hospital on the front, and I was waiting every day for six long weeks for it to arrive.
However, as soon as I started reading it, my previous feelings of reassurance were soon replaced with feelings of dismay.
The letter started with the usual opening statement outlining how my daughter presented on the day and then went on to discuss her medical history. There were, of course, references to the concerns I had as a parent which were followed by this sentence…
“I have reassured mother that [my child’s name] was doing very well on the day and that we will give a follow up appointment, as required.”
So why did I get upset about this? Wasn’t it great to hear she was doing well?
Well first of all, of course I knew how my daughter was the day of the appointment – I was after all, in the room with her. I didn’t take her out of school nor me out of work to seek reassurance about this. Nor did I go to seek reassurance that she would be followed up on (I had taken this as a given.)
I had gone there with a specific agenda.
I wanted a proper plan to be put in place for her, for when she wasn’t doing “okay”. With three years of my daughter living with sporadic high blood pressures, a huge fear had settled on me that one day something terrible would happen to her – and all because we had no clue what to do or where to go when this happened to her.
Now please don’t classify me as a neurotic mum yet…please hear me out.
We had been told by specialists that there could be a possibility of my daughter having phaeochromocytoma or carcinoid syndrome, but that sometimes it is only when puberty starts that a true picture would show itself. My daughter also was diagnosed with the same hole in heart that her daddy has [PFO], of which he suffered a stroke from at age 42.
So, for three years our “emergency plan” was to go to A&E every time her blood pressure spiked, to get her urine catecholamines done. This quickly fizzled out because firstly, it wasn’t good for any of us (especially her) to be made more anxious by being in hospital; secondly her blood pressures were spiking all the time and it wasn’t feasible to keep travelling up and down, and lastly, I swore that if I ever heard the term “white coat hypertension” one more time, my own blood pressure was at risk of going through the roof!
So all I wanted out of this appointment was to be reassured that nothing bad was going to happen to her, that I wasn’t “crazy” and that we could have a proper short term and long term plan for her. But by the end of the appointment (and the letter) it was obvious to see that we weren’t going to get this at all.
It also occurred to me upon reading the letter that the other health care professionals that were cc’d into it, could make the possible presumption that I, her mother, was feeling reassured and not, which was the reality, still stressed. With “presumption” in itself a whole other conversation of which I regularly refer to in way of a proverb [in a language I couldn’t possibly share on this blog!] ” I started to think more and more about the safety issues of using this terminology.
In this case, however, I think it could be fair to say that the health care professional reading this letter could have been led into this presumption because it clearly stated how I had felt (even, if it were in someone else’s opinion).
So what does the term “reassurance” actually mean, and when or where should it be used?
Interestingly, reassurance is defined as an action of which removes someones doubts or fears, or it is even a statement that does the same.
An action? Really?
By now, I’m sure you can say that it was quite obvious that my doubts and fears were not acted upon.
So my question is, should correspondence between health care professionals include the term “reassurance” unless the same has been specifically asked of the parent or patient? An excellent blog by Bronwyn Thompson, editor ofHealthSkills discusses the benefits of reassurance in patients and she refers to Linton, McCracken & Vlaeyen (2008) who discuss whether reassurance is actually, reassuring.
Simply put, for someone to reassure someone else, shouldn’t they both be discussing the topic of which caused the fear or doubt in the first instance? And surely a reassuring statement (such as in the letter) can not be given unless it is in fact agreed upon, with the person who had the feelings of anxiety?
Maybe a simple solution to my daughters letter would be to replace the noun “reassured” by the word “told”, for example –
“I told mother that [my child’s name] was doing very well on the day and that we will give a follow up appointment, as required.”
Because if a health care professional perceives a patient to be reassured then there is a possibility that that next appointment will be pushed to the bottom of the pile. The urgency of such a situation may not be deemed as so, because the parent “feels” okay at this time…and the child is doing well.
Now, I do want to make one thing clear.
This issue I have is only around the way in which health professionals may communicate. It does not reflect whatsoever their ability, skills or professionalism. Believe me, if I don’t like or trust a physician – I move.
Simple as that.
We are very lucky to have the health care professionals we have, although on the same note, quite unlucky that we know them because of the health we do have!
This blog is just a reflection of how communication could be improved upon in relation to medical data. To be honest, if I had my way, I would love to see all parents cc’d into every letter that go between health care professionals as they are, after all, the child’s primary carer. But for now, even if we just change a word or two, it can really help bridge the communication gap that seems to be getting bigger and bigger.
And if that word were only “reassurance”, I feel I myself would be reassured.
Reassurance is a feeling.
I think a patient or parent should always be asked at the end of their appointment do they feel reassured about the initial concerns they had. But I don’t think it is necessary, appropriate or even safe to include such “feelings” in a medical document.
Unless of course it is around the feeling of “concern”.
And that, dear reader, is a whole other topic.
Last Thursday, on the 30th April 2015, the 3rd National Medicines Forum was held in No.6 Kildare Street, Dublin 2 – also known as the Royal College of Physicians of Ireland. Upon walking in the doors of this truly remarkable building, you honestly feel like you’ve stepped back in time – you can feel the depth of history and can imagine the learning that was absorbed by medical practitioners gone by. Ironically this same sense actually ran as a theme for a lot of the day as many of the speakers reflected on past eras to compare to present activities.
As I walked into the great Corrigan Hall, I felt that usual flutter of nerves in my belly, as I started thinking about my own upcoming presentation. As a non-health care professional, I was very aware that I was in the presence of extremely skilled, educated and knowledgeable persons from the medical arena, but thankfully, as soon as the speakers began, I soon became absorbed in the topics being discussed and my fears quickly disappeared (until it was my turn that is!).
Now I realise that if I were to write in detail about each and every presentation that was delivered from this enlightening eight hour forum, I would have a short novel written, so instead, I will just do a quick skim over from my perspective as a patient, on what I felt was an extremely educational and inspirational experience, from beginning to end.
Thinking back to when Dr. Helen Flint, National Lead for Medicines Management [ONMSD], kindly invited me to this event, I remembered my initial reaction upon hearing its title, and I was a little apprehensive about whether I would be able to comprehend all the medical terminology during the day.
But to my surprise, when I heard the chairs, Dr Helen, plus all the other speakers present their findings, I not only understood [99%!] of what was being said, I also found myself relating to nearly all of the drug names, their classes and what they were used for! Upon realising this initially, I was delighted as it meant I wasn’t sitting there clueless – but a split second later, I recognised that in the reality of my life, this of course, was not a good thing at all because I had either taken or given many of these drugs to different family members over the last few years due to all of their different chronic illnesses.
It was after Ms Mary Brosnan’s (Hon President IADNAM) opening remarks and during Professor Michael Barry’s presentation that many of these medication names were mentioned. Amongst other findings, he was able to showcase some possible projected financial savings if a switch from branded medicines to generics were to happen. Now this topic came up again later during the day when GP, Dr Brendan O’Shea and his team, implemented a study which was able to test the reactions of patients when the branded was changed to a generic by their health care professional. While the majority of patients had either no change, and/or positive outcomes, there were patients who were not happy and even some frustrated or angry with the changes made to their drugs, even though they agreed to partake in the study.
As I listened to these outcomes, I couldn’t help but contemplate how I myself would feel if my children’s drugs were changed to save money, especially if the drugs had been working perfectly fine.
I’m sure I would have asked…
Should I change their medications just to save the “health service” money?
Can a price be put on life or well-being?
And so I thought back to earlier in the day when Deputy Head of the National Centre for Pharmacoeconomics (NCPE) Dr Roisín Adams demonstrated the tough job her team have when recommending what drugs should be put on the reimbursement scheme. Dr Roisín told us how they had to use as much evidence as they could find, from across the world, to weigh up the effectiveness of a drug in comparison to its cost. She explained the difficulty in getting good, quality, measurable data and asked us all to participate in making a decision as to whether we would buy in a drug that could add six months extra to a person’s life. We all found it very difficult to make a decision without more information and she demonstrated that one of the important things they needed to learn was what the quality of life for that person would be in that six month term. Obviously so many other factors came into this process, but she spoke in a way that even I could understand – considering I even found it difficult to pronounce the word “Pharmacoeconomics”!
The tough job Dr Roisín had when making these decisions was made even clearer when inspirational patient and advocate for Cystic Fibrosis Ireland, Katie Murphy, spoke about what her peers had to say about a drug that had worked wonders for them. Katie showed us the many testimonials from CF patients who had been affected in the most positive of ways by this miracle drug, noting that this type of “quality” data is what needs to be captured and used, to help the likes of Dr Roisín and her department make more informed decisions.
Now in the last few years, I had heard this term “informed decisions” being bandied about but I had often wondered if everyone knew what it meant. So when Professor Laserina O’Connor, Prof. of Clinical Nursing (MMUH, UCD), came on stage, I immediately took a liking to her as she showcased some of the one-to-one work she had been doing with patients in the community setting. She was able to validate that by understanding the daily life experience of the patient she could then assess the situation realistically and determine best treatment methods for that individual. She also acknowledged the importance of educating the patient, and their family, about their chronic condition and recognised the difficulty they can have in managing medications and treatments on a daily basis.
But we found that another group of people were also affected on a daily basis by medications and treatments – and these were our prescribers. After a warm welcome from Dr Maura Pidgeon, Chief Executive Nursing and Midwifery Board of Ireland; Professor Peter Weedle, School of Pharmacy UCC,was able to showcase his innovative technology to help health care professionals manage medication reconciliation. He spoke about how to “SIN with EASE by KISSing” [an apt analogy you had to be there for!] and continued his presentation by showing us a very funny YouTube clip [watch it here, it really is very funny!] where a psychologist tells his patient who is afraid of being buried alive to just “STOP IT” over and over again.
Now, of course, everyone can take their own message from this video but for me I feel that there can often be a lot of frustration for health professionals when patients don’t change their behaviour, and as a result, they can either continue to just say the same thing to everyone or go into complete reverse and say nothing at all, putting all patients in the one bracket. I think the same goes for health care professionals who also don’t want to change their behaviours when prescribing and so the message in this video goes both ways. But one thing is important for all stakeholders in our health system – education is fundamental. Health care professionals have an extremely difficult job – every day they make decisions about people’s lives – which can be the difference between that person getting better…or the complete opposite.
So when Dr Mary-Jo McAvin, from the National Medicines Information Centre in St. James Hospital spoke about how their service aims to promote the safe, effective and efficient use of medicines for health professionals, I was delighted that they had somewhere to go to help them continually make better decisions. I learned on the day that through their clinical enquiry answering service they provide evidence-based information and advice to healthcare professionals/agencies on all aspects of the therapeutic use of medicines including indications, drug interactions, drug use in pregnancy and lactation. I have to say I really was so glad to know that professionals had such a great “go-to” service for medical evidence!
Evidence I’m sure some of which has had to have come from Dr. Tamasine Grimes, Associate Professor (Pharmacy) TCD & Tallaght Hospital whom presented a variation of possible ways in which to tackle medication issues.
When she told us that more than 8% of emergency department admissions were due to drug related issues I immediately thought to myself, that if for every 100 patients, 8 of them were not in A&E, this could help tackle the huge problem we have of people lying on trolleys for days on end!
Dr. Tamasine demonstrated the importance of collaborative team efforts in hospitals regarding reconciliation and told us that 6% of all discharged in acutes had a potentially severe drug error. She revealed how a study, named PACT [Pharmaceutical Care in Tallaght Hospital] was a collaborative model of pharmaceutical care involving medication reconciliation and review. She told us it was delivered by clinical pharmacists and physicians, at admission and during inpatient care, and at discharge was shown to be protective against potentially severe medication errors in acute medical patients and also improved the quality of prescribing in older patients. She went on to describe their launch of their Zero Harm Initiative just last month, an initiative I’m proud to say, I also enjoyed helping out with.
After her presentation, I got a bit brave and took the microphone to openly commend Dr. Tamasine and the team in Tallaght on their collective approach and hoped that more in the room could take part in trying to disrupt any unhealthy competitive cultures and replace them with collaborative, nationwide initiatives.
On this, Professor Michael Barry closed the day remarking on the innovation and enthusiasm that was shown throughout. As he spoke however, I couldn’t help but think again about his presentation and about how I would feel if my children’s drugs being changed to save money.
And I thought – what if my children were started on generic drugs from the very beginning of their prescription?
Would I be asking these same questions?
So what if prescribers just started giving the newly diagnosed generic drugs to begin with– thus avoiding the upsetting of those already on drugs which are working for them?
I thought of my children’s physiotherapist – if his hours were cut because the HSE had less money due to unnecessary overspending on medications, then my children’s health would be at risk.
And then yes, there would be a price to pay for their well-being.
So maybe if more patients were educated on the implications of the costs of branded drugs versus generics, then we could all actually help our health care professional and health service, by requesting generics ourselves?
And so, happy that I could take so much away from the Forum, I looked around and again thought of the building we were in and how many others, just like myself, had gained insights from inspirational speakers, in this very room. I reflected on how I had felt when I saw the beautiful staircase as I walked in the doors and I recalled Dr Helen Flints presentation, showing us how the role of the nurse had changed a lot in many ways, but not so much, in many more.
Change, of course, will always be a challenge but remember anything can be achieved if we don’t mind who takes the credit. We should strive to change what needs changing, but be smart enough to leave well enough alone.
Much like this big, beautiful building.