#FABCHANGEDAY The Colostrum Project

As a mom, patient and carer – and founder of the Global Village of Health Translation – I often find myself researching various health topics via “Dr. Google”.

One thing I never found online though was information about the benefits of the very first feed that you give to your new born baby – that was until I found myself having a very interesting online conversation with neonatologist, Prof Minesh Khashu; Irish Midwife, Deirdre Munro and UK Midwife, Sally Goodwin.

As a young mum (a long time ago, I might add!) with my first newborn, I don’t mind admitting I was not at all comfortable with breastfeeding. This stemmed from a fear of the public watching and judging me, or worse – my dad or brother seeing me breastfeeding.

And so, sadly, I didn’t breastfeed.

Too scared of society; too scared of my privacy being on show.

I write this from the heart because I made a pledge today with my fellow team members to change the perceptions of breastfeeding – and to show that if you only gave the first feed to your baby, in the privacy and safety of the labour ward with your kind health professionals supporting you, you would be giving your baby a gift of immunity, for life, through a powerful antibody known as Colostrum.

And just by starting this process, you might find that breastfeeding is just so natural, that it isn’t something anyone should ever be ashamed to do – and you may continue to enjoy the experience. I wish I had known this when I had had my children.

So we, as a team, co-designed this beautiful poster below to help create awareness of the benefits of the “first feed” and I am now delighted to say that this poster, and pledge, was published today through NHS #fabchangeday on Twitter.

We were overwhelmed when in just a few hours of going to post, we were then asked by various health professionals could they print it to shared in their various health care settings!

We would love to see this poster in as many hospitals, birthing centers and any other health settings across the world and we hope you might join in too, to promote the benefits of this amazing gift from Mother Nature. If we only help change one moms perspective, it will help one little baby – and hopefully will be passed on to each and every one of their children too.

We, as a team, pledge to change the perceptions; change the process and change the world – one mom and one baby at a time.

Can you pledge to do the same?

Because – Every Drop Counts.

Kindest regards,

Olive

#fabchangeday #nhs #colostrum #everydropcounts

Doing it with us, not for us…

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

Building a Culture of Patient Safety, July 2008

Staff Guide to Patient and Public Participation, Cork University Hospital

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

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

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

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

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

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

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

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

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

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

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

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

Mr J.A. McNamara – CEO CUH Hospital Group

Ms. Celia Cronin – Clinical Governance Manager  CUH

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

Mr Liam Woods – National Director Acute Hospitals – HSE

Mr Gerry O Dwyer – Group CEO South West Hospital Group

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

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

But if we don’t try we’ll never know.

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

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

Let’s all “Do it With Us, Not For Us”

We all have a story. This is mine.

 

Hello, my name is Olive.

Tonight (or today in some parts of the world) I share with you some precious moments of my life over the last four years, since founding my social ethical enterprise, which was born out of a pure need to just help other people.

I’m not going to fill you in here what my background is, but if you watch my video above in full, you will find that I know too well the difficulties that is that of manoevering through health services. But, and there is a but…

I am determined to make a difference.

And not alone, either…but with everyone, together.

I hope by sharing my story here, I will open up peoples minds about their perceptions of patients, carers and healthcare professionals.

Their perceptions of people. In general.

I want to lift the stigmas attached to those going through health issues, relationship breakdowns, financial difficulties or anxiety and depression.

I want to join the gaping holes that exist in health services that patients, carers, families and health care professionals can all too often fall into.

I want to educate everyone on what it is to get stuck in a never ending well of appointments, medications, conversations, complications and admissions.

I want to share my journey from the patients perspective.

I want to share my journey from a persons perspective.

A mums perspective.

It’s not an easy thing to do though. People can often make their mind up about you before they meet you.

I may come across as “naive” because I am honest enough to ask questions and not pretend I know what is being talked about but what I am really doing is making sure I have a clear picture of what is being said.

I may come across as “unfocused” because I talk about so many things at the same time, but in my head I am just joining the dots as part of the bigger vision.

I may come across as “too nice” when I talk about patients not paying the price for services, but in my head I know the value offering for the service this culture changing model will bring.

I have been told in a nice round-about-way that I would be better to stay at home or get a part time job, as I have “so much going on in my life”.

I have even been told that I’m a “risky” hire – “Oh, but what if the kids get sick!”

Oh, but what if.

Anyone at anytime in their life can become unwell. Without notice.

With one third of the globes population currently suffering from chronic conditions, the stats speak for themselves. And don’t get me started on road accidents, suicides or workplace incidents.

I am no riskier than the next person.

And nor is the woman who suffered from post natal depression two years ago and wants to go back to work now. Or the homeless man on the street, with a small dog by his feet. Or the family who live in a hotel because their house got taken from them. Or the single dad with three children.

You might find, if you give us a chance, we can actually be your best assets.

We work with passion.

I hope to inspire others to share their journey. I so deeply care about making our world a better place. I am a smart, proactive, solution based thinker and I know the key to success is through collaboration…and kindness! I hope to raise my beautiful girls to think the same.

I am so grateful for those that opened their eyes, ears and hearts (and sometimes even their wallets!) to help me on my journey to clearer, safer and healthier health services across the globe.

And I am looking forward to those who will help me now going forward.

My video above is a reflection on what have been some of the most happiest, and saddest days of my life. I hope it will inspire you to share your journey.

Thank you…

Olive x

 

For more on yours truly visit…

Website www.medistori.com
Twitter @medistori
Facebook www.facebook.com/medistori

I am also the Patient Lead for the World Health Innovation Summit

#WHIS16 #WHISCumbria16 #WHISLondon16

www.worldhealthinnovationsummit.com

Please also use #hellomynameis whenever you get the chance, led out by the inspirational Kate Granger who has since sadly passed away.

The Patient’s Perspective on eHealth Ireland’s Ecosystem.

Last month, I was both delighted, and honoured, to be invited to keynote the 4th National eHealth Ireland Ecosystem meeting, as chaired by the first CIO of the HSE,Mr Richard Corbridge.

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!

#eHealth4all

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!

Reassurance – Often written, rarely verbalised.

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.” 

 

Why?

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.