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The End of MediStori is not The End of My Story

I don’t think stories ever really do have endings.

They certainly have beginnings, they definitely have chapters, but I don’t think they have endings. The best stories ever shared will almost always leave a person wanting to know or learn more. The best stories will leave lasting impressions and usually a different way of thinking about the subject in hand. Even when a person passes away, their stories live in others. The impact they have on others can last forever.

This year, I finished one chapter in my story.

I took a deep breath and handed over MediStori.

Handing it over was a choice I made on my own. A choice I made with my head, and my heart. I won’t deny that it took me a while to make that decision.

You see, MediStori was more than just a product to me. It was part of my story; my life.

Initially created in my home when caring for my dad, MediStori helped me keep my dad safe. After he passed away, MediStori became even more sentimental to me. My dad loved MediStori; he loved the fact that I had put so much thought into caring for him.

I absolutely loved caring for him.

After he died, I was even more determined to help other carers and patients. You could say my dad was my drive for change. My other drivers were my children: I am a mum of four daughters who all have complex chronic conditions. My support system was my husband, friends and family. They all believed in me, and believed in my vision for health services.

MediStori was far more than just a product. It placed the patient at the centre of all care.

The process of developing MediStori taught me more than any college degree ever could. Meeting so many unbelievable inspirational patients, carers, parents, families, health and social care professionals opened my eyes to the reality of what it was to self care; and provide care to others. Every single thing that people told me went into MediStori – I learned that my methods of facilitation and research was called “Experienced Based Co-Design”. I learned that the way in which I changed the product or process based on needs, was an exemplar example of Quality Improvement Methodologies [PDSA cycles]. I learned that the process was more important than the product. I learned that when you really listened, involved and engaged with people they would give you the solutions to creating the best health system. This was called Public Patient Involvement.

Along my entrepreneurial journey I studied – hard.

I completed a Fellowship with ISQua in Patient Safety and Quality Improvement; I qualified as a facilitator with Stanford University; I was awarded a Level 7 Special Purpose Award in Community Leadership. I was presented with an Honorary Fellowship by Canterbury Christ Church University [ECPD]. I became a reviewer with the British Medical Journal. I co-authored a national framework for Public Patient Involvement with DCU. I published my research in international journals, with the help of Dr Padraig MacNeela, NUIG.

Every time somebody mentioned something to me, my eyes were opened – I wanted to learn.

I valued people’s advice and help. I still do.

I won many awards along the way too. Every award I received meant so much to me – imagine so many people believing in me and my work in the healthcare field?

My most memorable public moments were when Enda Kenny endorsed MediStori; when I was handpicked for the Clinton Global Initiative; when I received the JCI Outstanding Young Person Award for Medical Innovation; and receiving investment on Dragons’ Den from someone I can now call a great friend and mentor, Mr Barry O’Sullivan.

Of course I couldn’t forget the remarkable recommendation for my work from the Director General of the HSE, Mr John Connaghan.

However, my most memorable private moments were when patients and carers contacted me personally to tell me how I had changed the way they managed their lives. Or when nurses, doctors, managers, pharmacists and charities told me how much I helped them in their work.

My research aimed to inform others of why this change was important.

This was, and still is, my purpose: “Change”

Proactive Change.

Systematic Change.

Collaborative Change.

MediStori changed me as a person.

It opened my eyes to the abilities I always had but didn’t realise were all that important in life: product design, facilitation, public speaking, negotiations, marketing, research, process change, implementation, strategy, business management; team leadership and culture change. As any other entrepreneur will tell you, this list is endless.

MediStori also changed my perceptions of people.

It taught me how to become resilient in the toughest of times, without ever personally becoming toughened.

Kindness, integrity and empathy are not signs of weaknesses, they’re signs of strength. Feeling sad when people hurt you, shows that we are all “human”.

As the saying goes – “People [humans] Buy from People [humans]”.

I am happy with my decision to hand over MediStori. Even though it is not part of me anymore, I will always be part of it. MediStori will now help create some of the best integrated care records in our health sectors. This was always my aim. I am happy to be still involved in some of these projects, one being a specialised record for specific cohorts of patients in the HSE.

This new chapter in my story begins with realising that I am MediStori. I am the product.

I live and breathe what it aimed to do – to put the patient at the centre of all care; to improve communications across all health sectors; to help people better self manage their care, appointments, medications and treatments; to empower our service users and our health care providers through knowledge; to integrate services and health records nationally and internationally; to include everybody in design, implementation and research; and most importantly to create safer and healthier health services for all.

In these last few years I have shared my knowledge and experiences with many national and international organisations in health sectors (voluntary, private and public) through my consultation and advocacy (support) services.

On the back of my decision to start this new chapter in my life, I am delighted to say that I am now in a much freer position to help many more in the healthcare sector.

I will give you a little word of caution however before you consider involving me with your team: if I feel I am being brought in tokenistically e.g. as a “tick the box patient” or a “good add-on to an organisation”, I will know it.

If there’s anything I’ve learned in recent years, I have learned to value myself.

I will walk away from those who are not authentic.

Why?

Because I am more than just someone who uses services, or someone who will be used by services. I help change services. I am an innovator and an implementer. I will give you value for money, if you value me for my worth.

My values will never sway because of profit, power, pride or promotion.

Finally, I want to finish this piece off by saying a sincere and heartfelt thank you to every single person that supported me, especially those who stood by me when the going got really rough.

You know who you are.

And because of you, I now know who I am.

Thank you.


If you would like to get in touch with me my email address is olivejoconnor@gmail.com or phone 087 7982232 (+353 outside Ireland)

I have left the MediStori website open for information purposes: www.medistori.com

My credentials and reference from the HSE can be viewed here

My research can be viewed here

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Sometimes I wish I was Ignorant.

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

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

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

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

But that’s the thing.

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

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

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

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

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

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

Like, worrying. Constantly.

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

I’m scared.

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

This is why I sometimes wish I was ignorant.

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

Maybe, maybe, maybe.

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

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

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

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

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

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

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

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

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

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

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

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

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


Published by Olive O’Connor, CEO MediStori

Thank you so much for visiting the MediStori website.

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

To learn more click here

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The FLU is a serious illness – BE RESPONSIBLE.

In 2009 myself and my three eldest daughters all contracted the extremely dangerous H1N1 virus – otherwise known as the Swine Flu.

The symptoms were immediate – starting with an extremely sore throat, followed quickly by a soaring high temperature, widespread body aches, vomiting, diarrhea, coughing and congested head, nose and ears.  Honestly, I was scared for my children, and myself. It came on so quickly, was extremely aggressive and no amount of over the counter medications seemed to help.

 

Every year new strains of flu arise across the world – ALL can be as dangerous as the swine flu.

I am writing this post to plead, yes plead, with people to not go to work or send children to school if they or their child experience any symptoms that could be similar to that of the flu. 

There are thousands of people with compromised immune systems – this includes not just those with serious illnesses, such as cancer, but also pregnant women and new babies. While the “healthy” population may recover from the flu, many others won’t.

THE FLU KILLS THOUSANDS OF PEOPLE EVERY SINGLE YEAR.

Would you like to be responsible for the loss of the life of another because you did not keep yourself or your child away from the public if you had had the flu?

When we got the Swine Flu I took every precaution to prevent anyone else getting it.

I rang my GP immediately. We were swabbed and the results came back as positive for the flu. I rang the school to inform them – and the next day the principal made a decision to shut the school down to prevent risk of infection for all other students.

This was the right thing to do. 

I then went about ensuring no-one else would get sick and tried everything to get us all better.

  • I text everyone and told them to stay away.
  • I set up our sitting room like a bedroom and moved all of us into it. Staying downstairs meant I could help prevent my husband from getting sick as we needed somebody well enough in the house to keep it going. He did not come near us. After work he would go to the shops, pharmacy etc. and dropped off the bags in the hall. He did the laundry every night and went upstairs afterwards. Yes, I was tired and unwell and the help would have been great but this was the right thing to do – he never got the flu.
  • Being in the sitting room meant I was near all my children at the same time and near the kitchen where all the medications, basins (for vomiting), food and water was. It just meant I didn’t have to go up and down stairs to get what I needed.
  • I opened the windows in our house every day to let fresh air in.
  • We had to go to our GP every second day as two of my children had compromised immune systems and needed their lungs checked to ensure they didn’t get pneumonia. We sat in the car outside the GP office until the receptionist waved us in – this ensured others in the waiting room wouldn’t get sick.
  • I used antibacterial agent on everything, all of the time, to help get rid of the virus from the house.
  • I washed the bed linen every day in 90 degrees water.
  • I burnt used tissue papers in the fire.
  • I ensured myself and my children coughed into our elbows.
  • I used a fan to help bring down the soaring high temperatures, and used cold baby wipes to put on their heads and under their arms.
  • I kept a medication diary to ensure I gave the right medications to the right child, at the right time.
  • I kept the water in the fridge to help cool down their temperatures and soothe their sore throats. I made them drink water at every chance I could.
  • I woke the children to stay on top of their medications to keep their temperature down.
  • I had to go to the hospital as I ended up getting pneumonia and I wore a face mask to prevent the spread.

These are only a few of the precautions I took.

Believe me, if you get the flu you will know it is very different to a head cold or any other bugs out there.

Please don’t use excuses for sending your child to school or going to work if you have symptoms of the flu.

You can get a letter from your GP if you’re worried about social protection getting involved if your child is missing school. Your employer can not fire you if you present with a sick certificate.

Schools should send letters home to parents informing them of same and with information on how to practice safe hygiene.

This is not about wrapping children in “cotton wool” – the Flu is a serious illness and can kill people.

We are all responsible.

Do your part.


Symptoms of Flu

  • High temperature
  • Vomiting
  • Coughing
  • Sore throat
  • Body aches
  • Diaarhea
  • Congested head, nose, throat, ears

If you have the flu please ensure you rest, drink plenty of fluids, use appropriate over the counter medications safely and ensure you practice good hygiene such as washing hands, disposing of used tissues immediately and coughing into your elbows. If you are concerned about your symptoms visit your GP or A&E but warn them in advance of your condition and wear a mask over your face to prevent the risk of spread.

 

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Cardiac screening for new babies – agree or disagree?


I am writing this blog as this issue is very close to my heart – and my girls hearts – literally.

Why?

Because I am a mom to a new little baby girl who has a cardiac condition.

Actually I am a mom to four daughters who each have had congenital heart defects.

ALL undiagnosed at birth.

ALL only diagnosed because I pleaded with health professionals to test them when I felt “something wasn’t right”.

Now I do not intend to scare monger anyone by writing this – I simply want to lay out some facts about CHD’s (congenital heart defects) and the importance of cardiac screening for newborns. I desperately want our health service to consider routine screening for all babies.

I also want all parents to be aware, listen and ACT on their gut instinct – because sometimes this is all we’ve got to go on.

But before writing this piece, I wanted to know what others thought about cardiac screening for new babies. So I asked people on my personal Facebook page. Ninety per cent of my friends said yes to cardiac screening, 10% said no. Within the “yes group”, many parents added “only if there was a family history”. From the “no group” many said their reasoning was because it could cause unnecessary worry and the tests could be invasive. There were also some comments about our health service not being able to resource such a service.

I have different opinions on each of these responses.

OPINION 1: “YES, but only if there was family history”

Did you know that many congenital heart defects have no known cause meaning that there is no evidence of family history of cardiac history? Did you know that one in one hundred babies born every year have a congenital heart defect [CHD]?

Did you also know that some cardiac conditions in parents do not present themselves until much later in life?

So in theory, if babies were only screened based on

a criteria of family history then many of them could be missed. And, in theory, the statistic is much higher if people are not diagnosed until adulthood.

Do I think babies should be screened only if there was family history? No, I feel all babies should screened. Because, as you will see later when I share my personal story, we had no family history prior to diagnosis.

OPINION 2: “NO, it could cause unnecessary worry”

This one baffles me.

How can the fear of potential worry override the prevention of a worse outcome for a child which could have been prevented? How can parents put their heads in the sand when it comes to knowing that their child may or may not have a health condition which in most cases can be treated early on? Or even know that their child has a condition but that it will cause no harm to them, as is the case with many CHD’s?

Every year, people get their cars serviced to ensure it is roadworthy and to keep them safe – why not do what we can to ensure our children are healthy to prevent any serious incidents which could have been prevented? Screening does not cause unnecessary worry – a child having undiagnosed symptoms over a period of time however, definitely does.

OPINION 3: “NO, the tests could be too invasive.”

Many people may not be aware but the basic tests for cardiac screening are probably the most non invasive of them all:

  • A little sticker (like  a plaster) can be put on the toe/finger of a baby to check their oxygen levels
  • A blood pressure monitor (like an adults) can be put on the baby’s arm or leg
  • An ultrasound called an echocardiogram looks inside babies heart (this scan is exactly like what women have done when pregnant)

More tests may be needed after these – but these are usually only if the baby is symptomatic or a cardiac issue has been found.

Additionally, every single baby born in Ireland has the highly invasive and painful heel prick test done. “The Heel Prick Test screens all newborn babies for six rare conditions.” Cardiac defects are far more common than these rare conditions, but yet aren’t screened. And the heel prick test is painful on baby, is invasive and requires trained health professionals to visit the home to provide the screening. I am not saying it shouldn’t be done – I’m just putting it into perspective.

OPINION 4: “Our health service couldn’t resource it”.

See point made above re: heel prick tests. Of course our system could resource it, if they put their focus on it.

For this part, I will share a personal story to show how many times I unnecessarily visited health services, just to get answers – when, if the screening was done in the first instance, this wouldn’t have happened. A small fortune could have been saved. My mental health could have been saved.

“My third daughter, Mackensie, was 12 days old before she was diagnosed with significant congenital heart defects. We had never had any health issues in our home prior to her arrival – my two eldest daughters were always healthy, as were myself and my husband – so I was quite ignorant when it came to knowing what signs to watch for. But I knew something was wrong with Mackensie. I couldn’t say exactly what it was, but I felt so uneasy that it warranted me calling the health nurse every other day and bringing her to the Emergency Department three times before she was 12 days old.

Every time I was told there was nothing wrong.

Every time I was told I probably had postnatal depression.

Every time I told them that there was something wrong with my baby.

I was even questioned about the possibility of me having Munchausen Disease (a condition where parents make their children sick on purpose for attention). Eventually I went to my GP (he was on holidays prior to this) and upon him listening to her chest he sent us straight to a different hospital – this is where she was diagnosed with three holes in her heart – PDA, ASD and VSD – and she was immediately sent to Crumlin. She was started on numerous diuretics (heart medications) and not long after had to be tube fed before her heart surgery as she could not gain weight. Thankfully over the next year, she recovered very well.

But the impact the whole process had on me was long lasting.

I kept thinking: “What if I hadn’t kept fighting? What if I’d given up asking? Would she be here today?”

Soon I couldn’t tell the difference between worry and gut instinct. I was in a constant state of panic. I had been diagnosed with Post Traumatic Stress Disorder (PTSD).

In the following years all sorts of unusual health issues arose in all of us. Though scared of pushing buttons too much, I still fought all the way to have all my girls hearts tested properly. My eldest suffered terrible headaches and sporadic blood pressure – she was then diagnosed with a hole in her heart called a PFO. Now this condition is not normally anything to be too concerned with, except my husband suffered a TIA (mini stroke) at the age of 42 and only because  we went to a private hospital was he diagnosed with the same hole in the heart as her – and we were told that it caused his stroke. My second girl then became very ill after a viral infection – she was not only diagnosed with Juvenile Arthritis but also with PVCs and PACs (arrhythmias of the heart), and now, tachycardia.  Again, she wasn’t the only one with unusual rhythms in the heart – I myself was diagnosed in with bradycardiia (slow heart rate). I was subsequently fitted with an internal heart monitor.

That meant all five of us had various heart conditions. None of which were known before 2006.

So you can imagine, when my fourth little baby came along, that it would be obvious that she would be scanned at birth for any heart defects. But no, this didn’t happen. Not because the health professionals didn’t feel it was necesssary – they did – but simply because of an administration failure. The letter from her paediatric team requesting an echocardiogram (heart scan) did not get to Crumlin or Galway. It took my GP to write to both of them to get the appointment.

It took a full 8 weeks into Madison’s life before she too was diagnosed with a hole in her heart.

Deep inside me, I knew she had it. I didn’t want to believe it – but all the symptoms were there. Symptoms that are so similiar to reflux that anyone else may not have known.

Madison was:

  • Taking a long time to feed (2 hours+) – often falling asleep during feeds and only taking little often
  • Not gaining enough weight – falling two percentiles below where she started at 3 months old
  • Sweating – a lot – especially during feeding or crying spells
  • Becoming blue around her lips, her tongue and fingernails – even when feeding
  • She showed signs of rapid breathing, sometimes with nostrils flaring
  • Coughing intermittently both before and after feeds – sounding like a “wet cough”

Madison was diagnosed with a hole in her heart (PDA). Her older sisters’ symptoms also included sleeping nine hours at a time (newborns should not do this!) and no weight gain at all, so Madison seems to be faring out a little better and we are now playing the “wait and see” game – hoping against hope she won’t need heart surgery. Madison also has silent reflux and a significant stridor which makes things more complicated so we have to log all of her feeds, have her weighed weekly, note down all her symptoms and increase hygiene regimes as she is at a higher risk of getting endocarditis (infection of the heart). At three months old she still feeds every 1 – 2 hours at night, and constantly feeds throughout the day with little to no sleep. This routine works for her though and thankfully last week we saw a slight increase in weight.

This particular hole in her heart can cause blood to leak into her lungs so I have to watch her breathing closely. She wears an apnoea monitor when she sleeps.

And that is where we are right now.

I know so many people that have told me stories about their children being diagnosed “by accident”.

Some of these people sadly lost their children because of it. I also know families that have lost adult family members due to undiagnosed heart conditions. This is what is so scary – even more so because it could possibly have been prevented.

So I do not understand people who do not think screening is a good thing for babies.

It is hard to “fight” to be heard, but stick with it if you’re gut is telling you to.

I hate the feeling that health professionals may think that I am “a neurotic mum” or tell me not to “mollycoddle” her and to force feeds into her in 20 minutes – if an adult has reflux/heartburn they can only eat little often also, so why is it any different for babies?

Had all of my girls been screened at birth – we wouldn’t have to had to figure out what was wrong- or use up so much time in emergency departments or calling to our GP. I wouldn’t be riddled with feelings of guilt and being a failure as a mom because my baby wasn’t gaining weight. I wouldn’t have the anxiety I have now. I would probably trust all health professionals opinions – but now, sadly, I don’t. Even with our family history now, it is still near impossible to get genetic testing done, which I feel is essential for my children’s futures.

 

Many countries across the world are starting screening programmes – many of which have shown to have little negative financial impact on health services, for example in New Jersey: “The CCHD screening program in New Jersey was also found to have minimal impact on hospital resources. On average, CCHD screening took 9 minutes and cost $14 per infant. Overall hospital costs were low as well, since only a small number of newborns required clinical exams and diagnostic testing.”

Either way, it shouldn’t come down to money – after all, can a price be put on the life of a child?

I would love to see Ireland take a stance on this.

I would love to know your thoughts on this, please let me know in the comments below or through our many social media domains.


If you are concerned about your child please go to your GP, health nurse or local hospital. Please remember, there are many conditions that share the same symptoms, many of which are not serious, but all should warrant a check up by a health professional.

For more information about children with congenital heart defects visit www.heartchildren.ie

If you would to keep on track of your baby’s health history MediStori Personal Health Organiser may be able to help. Learn more here.

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Fun Things To Do With The Family Over The Christmas Period

 

 

So it’s that time of year again. Excitement is building and preparation has begun for the arrival of family, friends – and of course the big guy himself.

While some might think November is too early to even begin to think about Christmas (!) we thought it would still be nice for those wanting to plan their holiday season in advance and so did up a short list of fun things to do over the next 6 weeks on the build up to Christmas day.

Ice Skating – Most big towns and cities will have an ice rink set up. Grab your skates and a hot chocolate and have a great time with friends and family. They also usually have ice buddies for the kids (and the bigger kids) who aren’t as confident on the ice. [It’s also a great way to burn off the calories from all the hot chocolate!)

Santa Visits – This is the big one, usually left for closer to the day itself. Loads of places around the country will have a Santa’s grotto set up. You may be able to book your tickets online to beat the queues.

Our CEO, Olive O’Connor’s favourite place to go with her children is Glendeer Pet Farm in Athlone – Ireland’s Lapland. There is loads to see and do and Santa even arrives on a sleigh on the first night (December 2nd), and you get to greet him!! Children are given bags of food to feed all the animals and they can even cuddle a few bunnies, guinea pigs, puppies and kittens! Afterwards enjoy a hot bowl of soup and a sandwich in the homely coffee shop while the children are looking at their gifts from Santa Claus!

Winter Funderland at the RDS – If you are looking for a big day out then this sounds great. loads to do and see with Ice skating, Christmas Market, Europe’s largest indoor theme park, Santa’s grotto and more.

It will run from the 14th of December to 14th of January. You can go online to their website to find out about opening times and booking.

The Helix Panto – This year the Panto is Beauty and the Beast. It runs from November 24th to January 21st. Bound to be a great experience.

Santa’s workshop at Aillwee Caves, Co.Clare – This is a lovely experience, and they also have a sensory day in Santa’s workshop for children with Autism and other sensory challenges. A lovely way to include everyone.

Cork Opera House Christmas Panto – Snow white and the seven dwarfs, running from November 30th to January 21st.

Light up Galway – Shop Street, 17th November, 5pm – 8pm

Light up Dublin – Grafton Street, Henry Street & O’Connell Street, November 19th, Time to be confirmed

Waterford Illuminates – Waterford for Winterval which includes Waterford Illuminates, is a 3D illuminating light show taking place each evening. Winterval, one of Waterford’s biggest festivals, it also has an ice rink, over 45 events (mostly free) and the Winterval Express Train. It takes place in Cathedral Square, on November 17th – 19th, 24th – 26th. December 1st – 3rd, 8th – 10th, 15th – 23rd, Every half hour from 5pm – 8pm

Killarney Christmas parade –  Santa will take to the streets of Killarney, With eleven floats, five times before Christmas for everyone to enjoy. The big opening Magical Christmas Parade starts at 6pm on November 25th and runs until December 23rd

WildLights at Dublin Zoo – This looks amazing! It is an “awe-inspiring” display of lanterns which includes a pride of lions, orangutans, tigers, giraffes, monkeys and a 16-metre high porcelain elephant tower and a 30-metre long Chinese dragon. Check out the website for more info.

Galway Christmas Market – Always a lovely day out for the family. Market stalls, food stalls, Big Wheel where you can have a great view of the city rooftops and watch the sun set over Galway bay from a height, Santa’s grotto, Santa’s train that will bring you on a trip around the inner city and a Carousel. It is set in Eyre square every year so is the perfect beginning or end to your day of shopping.

Christmas 5k Events – Blow off the cobwebs and burn some energy by taking the family to one of the many walks that will be taking place over the next few weeks. Your local community should have more information.

Coca-Cola Truck – It always feels like Christmas the minute we lay our eyes on the iconic Coca-Cola truck ad. The dates for the “Truck tour” have been released. It is a great opportunity to go and take your picture with the family and the truck, definitely one for the mantle.

 

Here is all the information or click on the link to find your location.

I hope this gives you some ideas for things to do with the family leading up to the festive season! If you have any other places you would like us to add to this blog please email us or Facebook message us.

Keep an eye out for our newsletter where we will be announcing some special offers. If you haven’t already, subscribe to our emails and it will be delivered to your inbox really soon.

Thanks for reading 🙂

Kindest regards,

The MediStori Team

 

 

 

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Pregnancy may be natural, but it doesn’t always feel that way!

“Millions of women give birth every day, it’s completely natural!”

Oh, if I could get a cent for every time this had been said to me since conceiving my first child 15 years ago!

Even though pregnancy is completely natural – sometimes it just feels completely unnatural! And I’m not using the word “unnatural” in a negative context – I’m using it in the sense that pregnant women often undergo so many physical and emotional changes that it is outside of their “norm” as they experience the various changes to their bodies, their lifestyles and their emotions.

 

 

 

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Insensitive Reactions to Allergic Reactions…“Sure a Small Bit Won’t Hurt You!”


Last week many of you may have seen the emotional story on ITV’s This Morning Show about how one of their former producers, Amy May Shead, went on holiday to Budapest, and suffered a devastating allergic anaphylaxis reaction to nuts, resulting in her being left severely brain damaged and in a wheelchair.

Amy had, and still has, a severe nut allergy. After informing the restaurant and showing them her allergy card (which was written in the country’s native language) she was assured the dish she chose was safe to eat. Unfortunately, this was not the case, and after just one mouthful of food Amy went into anaphylactic shock. The reaction was so severe that even after she was administered with TWO EpiPens this still resulted in cardiac arrest and her clinically dying for almost six minutes – ending up on life support.

Sadly, as we learned from the show, this could have been easily prevented.

Her mother came on the show to try to help others – she also felt peanuts should be banned on flights.

Her opinion started a huge debate online about whether or not this was a fair thing to do for people who didn’t have allergies: and we felt it something worth talking about. One online comment that stood out was when a person made the statement ” If you’re that allergic, stay out of first class”.

There were many other comments on this thread. Some felt it an unreasonable request as there were so many people who had allergies/intolerance’s to dairy, gluten, shellfish etc., but most felt it was the right thing to do.

As someone who suffers with allergies myself, I know how terrifying it can be going into an environment where you have very little control over your own well-being.

Nowadays, more and more people are presenting with so many different allergies, so much so that when someone says “Oh I can’t have/touch that, I’m allergic”, the general reaction is an eye roll or just not being taken seriously, and this may result in the person with the allergy being put at risk.

But why do people react that way?

Is it because we may have met someone who we felt “faked” it for attention? Maybe they insinuated that they had an allergy – but they didn’t – simply because they didn’t like a certain food, for example? Or maybe they didn’t want to do a certain activity/chore (e.g. dusting – dust allergy) or that they were trying to cut something out of their diet for whatever reason.

Or maybe, peoples negative reactions are simply because they just don’t understand what it is to have an allergy.

Unfortunately, these perceptions can have a negative effect on real allergy sufferers.

I personally have a food allergy. A lot of the time when I go out to eat, or go to someone’s house for dinner, I am constantly on high alert and worrying about what food is available for me to eat or wondering if they accidentally (and sometimes on purpose – to see if I am in fact making it all up) put in an ingredient thinking it was safe, when it was not.

This has happened on more than one occasion.

It does get overwhelming at times. Not to mention feeling like a burden if I have to request a separate dish to everyone else. Most places I go to eat are very accommodating, but there have been a few who just don’t take it seriously.

The lack of options available in restaurants for people who suffer from food allergies or intolerance’s is quite astonishing. Most people may not be aware that having an intolerance to something can be just as bad as having an allergy. You still get sick. You still have that worry that eating the food will ruin your day, night or even your week. It may not be as life threatening as an allergy but it is still a very real and valid condition.

The real difference is that allergy sufferers could potentially die from their reactions.

An allergic reaction is your immune systems response to a particular allergen. Your body senses the allergen soon after it being ingested and the antibodies react by releasing histamine. The histamine reaction causes swelling, itching and inflammation. Symptoms associated with allergies are:

  • Sneezing
  • Wheezing, Coughing, Shortness of breath
  • Swelling, Rash, Hives
  • Itchy eyes, ears, lips and throat
  • Vomiting and Diarrhea
  • Anaphylaxis

A food intolerance is where your body has difficulty digesting certain foods. The symptoms of an intolerance can take longer to appear than that of an allergy. These symptoms can include:

  • Bloating, Cramping
  • Migraines, Headaches
  • Irritable Bowel Syndrome
  • Feeling under the weather

It can be difficult to determine whether someone is allergic or intolerant as many of the signs and symptoms can overlap. Generally though, an allergic reaction is almost immediate, which helps in narrowing down the diagnosis.

Having an allergy/intolerance to any kind of food or substance can be very debilitating. Some people’s perceptions of these can be quite hurtful. I suffered for years before I actually got a diagnosis. Luckily I have never had an anaphylactic reaction, but my body would react within a half hour of eating the particular food. I would vomit for days, with hives all over my body. Until blood tests confirmed what the problem was, it was really tough to know what I could and couldn’t eat. Having people constantly question it and challenge me on “Why” or since I “Didn’t have problems with it growing up” then I “Couldn’t possibly” have an allergy now.

It’s important for people to know, intolerance’s and allergies can develop over time and not just show up in childhood.

I’ve also had people say to me “Sure a small bit won’t hurt you” and “Ah, there’s always something wrong with you”. This is upsetting and has, at times, made me feel like maybe I shouldn’t tell people and just suffer the consequences, but then sense kicks back in. Even if I want that slice of cake really bad (I’m not gonna lie, cake is usually the “almost” tipper for me!), there’s the immediate vomiting, aggressive hives, dizziness, nausea and stomach pains, that I have to think about, and those symptoms can last for up to a week.

So even though there might be some people who think a small bit wont hurt, that’s just the tip of the ice-berg.

 

 

It’s a HUGE thing to be diagnosed with an allergy or intolerance, at any age. It can be very tough lifestyle change for a lot of people and for a number of reasons. Apart from having the actual condition to deal with, you also have doctor/hospital visits; if you are in the early stage of being diagnosed you have the numerous tests and biopsies to go through and the cost of all these alone can be very hard on a person or indeed the whole family. You have to consider the certain foods you can no longer eat, which means constantly having to read labels when grocery shopping and planning your meals out ahead of time. There is the constant worry of wondering do you have your EpiPen with you, or going on a trip or a night out and possibly losing your medications. There are so many things you have to be aware of, and so many different scenarios about what “could” happen constantly go through your head.

The reality of this is, they could easily happen, to so many people. #

I really feel society as a whole should take allergies or intolerance’s more seriously, so there’s less of a likelihood for these bad situations to occur.

When I started working with Olive (CEO of MediStori) she told me about a very good friend of hers, Anne Walsh, who has a daughter with a severe anaphylactic allergy. Anne had set up her own website called www.Allergylifestyle.com because she herself found it so difficult to find a “one stop shop” to access solutions to help her daughter. When I visited the site, I felt for the first time in a long time, a relief knowing anything I bought there would be safe for me to use.

Such a simple thing for many, but a huge thing for me.

And this is the point of this blog post. Simple attitude changes, can make the biggest differences.

Whether you suffer from an allergy or an intolerance, as much as many of us hate to make a big deal about it, if we don’t speak up we risk ourselves getting extremely sick. It is then us who are left to deal with that, not the restaurant or the friend or family member cooking for us, so don’t let anyone play down YOUR condition.

We need to create an awareness about allergies and intolerance’s so that people DO recognise that it IS a big deal, maybe not to them, but to us it could be the difference between enjoying life or spending it in a hospital/in bed, sick for days.

Or in the worst case scenario, fighting for our lives.

Thank you for reading.

Kindest regards,

Jill and the MediStori Team


Do you or someone you know suffer with allergies or intolerance’s? We would love to hear your thoughts on this topic. Please visit our Facebook page or Twitter @medistori and leave your comments.

Visit the MediStori website to buy your Personal Health Record to include allergy information: https://medistori.com/wp/shop/

Links to Visit: 

http://www.webmd.com/allergies/foods-allergy-intolerance

www.betterhealth.vic.gov.au/health/conditionsandtreatments/food-allergy-and-intolerance

http://www.safefood.eu/Food-safety/Food-Allergies/Allergy-or-intolerance.aspx

 

 

 

 

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The HPV Debate: Trust, Transparency and Torment

Warning: This is a long blog post!


I am nervous writing about this topic, especially because I work in the healthcare arena. I am genuinely concerned that I will be accused of spreading “false information” or worse, called an “anti-vaxxer”. Isn’t it sad that I feel so worried about simply expressing my views?

But that is the reality of where the “debate” regarding the HPV vaccination is headed.

As a mother to three daughters, I feel it important that I be given an opportunity to express my personal opinion on the matter, and to find out what others are thinking too – in a safe, non-judgmental space. All I ask is as you read this, remember that this blog is what this is – my personal opinion. To be clear: I am NOT anti-vaccine, nor am I against the HPV vaccine itself, though I have not given it to my daughters – YET.

And I really emphasise the words MY daughters and YET. I will explain why, further in this article.

So, for the last few years there has been an ongoing global discussion about the safety and efficacy of the HPV vaccination which is given to teenage girls in schools. In the last few months however, I have noticed that this debate seems to have taken a rather detrimental turn. One thing I have found most disturbing is the aggressiveness people are showing towards one another when they discuss this topic online, or otherwise. Go to any social media post about the HPV vaccination and you will see it for yourselves. These comments below, for example, taken from the HSE’s HPV Vaccination Facebook page, are not unique.

Guilt tripping seems to be rife.

Parents are calling other parents who DON’T give the vaccination, irresponsible or insinuating they don’t “love” their children. Parents are calling parents who DO give it the same. People are telling other people who don’t have children to not get involved in the discussion as it’s not their place. Journalists are competing with other journalists to share their opinions and “facts”. Public bodies and organisations are doing the same.

Politicians are being told to stay out of it.

Words such as scaremongering, ignorance or emotional terrorism are being used.

Yes, there is terror – parents are terrified of their children getting cancer and/or their children suffering from adverse reactions from trying to prevent it. Many parents are tormented into trying to make the right decision for their children.

But who am I to talk about this subject?

First and foremost, much like every parent, I am a person who will always aim to do the best for my children to ensure that they are happy, safe and healthy. Secondly, I am a patient and carer advocate, researcher and social entrepreneur. Everything I do well in my work in healthcare boils down to one simple thing: two-way open-minded communication. I have years of experience in market research and facilitating focus groups, with an aim to co-design solutions for our health system. The core of my own project MediStori has always been built on the foundations of working with all stakeholders to ensure their opinions and thoughts were inputted into this work, and most importantly, that these opinions, be they positive or negative, were valued. MediStori was designed and developed with over 500 patients, carers and health professionals together over a period of four years. I enrolled external researchers to oversee our national research to ensure my personal bias would not step in the way.

Who was I, little old Olive, to determine what it was that our health system, health professionals, patients or carers needed?

We changed the product over 19 times until we had a solution that the majority were happy with. We preferred when people gave constructive criticism than just nodded their heads and said they agreed with everything we said. How would we learn and make the product the best it could be, if we didn’t know the truth from those who would be using or promoting it? Imagine if we told all the people in our focus groups that their opinions were wrong, and all we did was aim to convince them that the product was perfect as is, just so we could get it out there?

Imagine if I made bold definitive statements, or half truths, just to get initial buy in? And then later added in the small print; the actual facts?

Where would my ethics lie? And when the product reached mass market, would it actually work if it didn’t suit our customers and end-users needs?

Now I am not here to discuss MY business, I am simply stating this because I am not unique in taking this approach. In the business world, customer experience is key. If a customer has a complaint, management know they should always try to ensure they make amends to right any wrong doing. Additionally, they aim to learn from the experience to ensure it doesn’t happen again to anyone else. But what I am consistently finding in our society, especially when it comes to healthcare, is that no-one really seems to be willing to take this approach – instead it seems to be a constant battle of the wills.

And I really, really want that to change. Especially when it comes to the HPV “debate”.

Below, I am going to outline my thoughts on the following topics:

1) Why I ask questions about the HPV vaccination before giving it my daughters, and why I feel I should be allowed to ask these questions without being accused of wrong doing, or worse, be accused of being a bad parent; ignorant or scaremongering. 

2) I am also going to analyse the information available about the HPV vaccination that is given to me as a parent before signing consent – just as if I am in a focus group and asked to give feedback on same.

3) I will also share my thoughts on why I feel the manner of the “debate” needs to change.

But before I do so, I think it’s important for people to know the background of the Irish HPV programme and discussions that have taken place.

In summary:

  • Since 2010 the HSE have promoted the HPV vaccination for 12/13 year old girls to take, with an aim to prevent them catching some HPV viruses, which could potentially lead to some cervical cancers.
  • Parents were given a leaflet from the HSE informing them of some of the potential side effects; statistics/data on cervical cancer/HPV; the benefits of the vaccination; plus other relative information, prior to consent.
  • This vaccination was administered to girls in schools by health providers, after consent was given by their parents/guardians. It was also administered at the same time as other standard vaccinations.
  • Since the start of the vaccination programme, a number of girls were reported to have suffered from various reactions and symptoms, of which they state they did not have prior to the vaccination; and of which they state happened within a short time of receiving the vaccinations. Symptoms reported ranged from mild to severe. Many of the symptoms reported were said to not be alleviated over a short time period.
  • Concerned parents and guardians contacted various health professionals and organisations to find the cause for their daughters symptoms and to get an accurate diagnosis so they could treat their children appropriately.
  • The HPRA (Health Product Regulatory Authority) has received 1,099 reports of possible adverse reactions from a total of almost 690,000 doses administered, and of which 230,000 girls received the full course.*
  • Since receiving the vaccination, “648 cases were considered serious, meaning they included circumstances where patients required intervention, such as a review by their GP, treatment for their symptoms, or both.” Credit: Irish Times.
  • Many of these girls have come forward stating they now suffer from complex chronic conditions – of which no causation has yet been found. 
  • Organisations, such as Regret, asked the HSE and Department of Health for an independent review/ clinical trial for these girls to see if the vaccination could have caused their illnesses, or if it was caused by other factors.
  • No independent clinical trials have been done to date with these girls.
  • These organisations also asked the HSE why the detailed patient information leaflet [PIL] provided by the drug company [whom created the vaccination] was not included in the information pack given to parents by the HSE, prior to them giving consent.
  • This PIL is still not included in the HSE information pack to date.
* Please note: 690,000 doses does not equate to the number of girls who received vaccinations. Read this article in The Irish Times; 12th September 2017.

To date, the concerns of the organisations, parents and children still remain – as do the concerns of the HSE regarding the steep decline in the uptake of these vaccinations. But instead of an open minded conversation to get to the bottom of the concerns for both parties, it seems that all engagement has ceased and an all out war is breaking loose.

I was lucky when my daughters received the forms for consent – I had a chance to pause and think before making any decision.

This was because I was one of the first women in the country to receive the vaccination over ten years ago, so I had personal experience on my side. Remember while reading this, I chose to have the vaccination myself – and pay for it too – therefore I am NOT anti-vaccine, nor anti-HPV vaccine. Like I did then, I now decided to access as much information available online to see if new evidence had emerged. And what did I learn? I found that much of the research out there was not written in a manner in which non-health professionals or non-researchers would find easy to understand, and this in itself caused more confusion. Likewise, I had to filter through countless online documents to find information based on facts, rather than opinion. As I did so, I came to the realisation that many parents did not have the time to do this same level of research in the time-frame from them being given the information pack, and consenting to the vaccine.

Two documents which were relatively easy for me to understand though were 1) the HSE’s hard copy information leaflet which is given to parents prior to consent and 2) the drug companies own hard copy patient information leaflet [PIL] about the vaccine – which is not given to parents prior to consent. [A PIL is the little leaflet which is given with all drugs and medications that are bought in pharmacies – it includes information about the drugs such as ingredients, risks, benefits, doses etc.]

So I decided to compare both of these documents to see if they included the same information. Were the parents and organisations right in requesting that the PIL should be included in the information pack? I wanted to find this out. I also knew I could not agree to give the vaccination to my daughters without as much knowledge as possible under my belt.

Below, I have shared my thoughts on both leaflets, just to simply highlight one of the most important topics in this debate: Informed Consent:

Informed consent is permission granted in FULL knowledge of the possible consequences, typically that which is given by a patient to a doctor for treatment of the possible RISKS and BENEFITS.

I wanted to see if I was given FULL knowledge of the possible RISKS and BENEFITS before signing consent for the vaccine; remembering that the only information I was handed was the leaflet from the HSE. Please note: my observations below do NOT relate to the actual research on the vaccine, but instead, the information provided to me to help me make the right decision. Throughout this process, I did however feel the need to investigate some of the statements made so there are other links included in this blog to help me clarify my thoughts.

These are the links to both documents of which I analysed: HSE Leaflet  (HSE)  Drug Company Leaflet [PIL] (PIL)


Observation 1)

HSE: There is no printed PIL content in the information pack given by the HSE, however there is a QR code included to access the information.

PIL States: “Read all of this leaflet carefully before you or your child are vaccinated.”

My thoughts: The manufacturers of the vaccine recommend that the vaccine PIL should be read in full carefully prior to vaccination, however, the HSE do not provide this in printed format, nor do they state that parents should read it prior to consent. Actually the HSE specifically instructs local health authorities NOT to include a PIL for the vaccine  for parents, as seen here. However, on the back of the HSE leaflet they have included a link to the HPRA (Health Product Regulatory Authority) and a separate QR code to link to the PIL information. I wondered why the HSE did not just put in the direct worded link to the PIL instead of parents having to 1) try to find it on the HPRA website themselves 2) download the QR app to open the link, or 3) try to figure out what a QR code was? Why could a printed version just not be added into the pack altogether? By not adding it in, I feel it made it harder for parents to do their research, thus meaning they may choose not to do so at all. 


Observation 2)

  • HSE States: “This leaflet contains factual information to answer your questions. Please read it and then fill in the enclosed consent form.”
  • PIL States: “Read all of this leaflet carefully before you or your child are vaccinated. Keep this leaflet. You may need to read it again. If you have any further questions, please ask your doctor or pharmacist.”

My thoughts: I find the HSE leaflet is telling the parent what they should do rather than giving them more options before agreeing to consenting, unlike that stated in the PIL. I think it important that parents/patients are not told what to do, but rather be given options, time and space to make important decisions. While the leaflet contains factual information, it is also quite emotive – unlike the PIL.


Observation 3)

  • HSE States: “HPV vaccine protects against cervical cancer”. 
  • PIL States: “Gardasil may not fully protect 100% of those who get the vaccine.” “Nor is it effective for all cervical cancers.”

My thoughts: I know in my business I can not claim anything works unless it is based on evidence. It is interesting that the HSE state on their front cover that it “protects against cervical cancer” whereas the PIL claims it may not give 100% protection. Why are definitive statements such as above put on the front cover instead of using the words “may protect”? The statements inside this same leaflet, then say that it protects girls from 7/10 cervical cancers, not all cervical cancers – so why is this not on the front cover too – and isn’t this contradictory?  I do feel the facts need to be outlined from the outset, to ensure parents are truly aware of what the vaccination can/cannot do, instead of aiming to convince them that it WILL do its job, before they even read the material inside. I feel the leaflet needs to be clear in what the vaccine’s main aim is: to prevent 4 out of 100 HPV diseases, which could prevent 7/10 cervical cancers. Many businesses use overarching messaging in marketing promotion strategies but they nearly always cover themselves by adding an asterix or star beside it as a disclosure, so customers can read more, but only if they WANT to.

E.G. You will lose weight if you take this pill * SMALL PRINT: *This pill will work if you exercise and drink 8 glasses of water a day also.

Many people just do not read the small print. I know this because of the many of the comments online from people who are consenting to the vaccine. They are adamant that the vaccine will prevent them from getting cancer, and state that those who don’t give it to their daughters are irresponsible. This leads to my next observation.


Observation 4)

  • HSE States: “HPV rates have fallen by over 90% because 9 out of 10 girls get the HPV vaccine” 
  • PIL: There is no information related to this statement included in the PIL.

My thoughts: The HSE’s statistic above relates to the falling rates of the virus HPVnot cervical cancer. This is where confusion can occur when parents are trying to make a decision – a clear division needs to be made between the two diseases.  Many people online keep talking about preventing cancer – but not HPV which is what the vaccine is actually for.

Statistics can also be really confusing. I am no genius at maths, but I always give it a go – especially when trying to make important decisions. I wanted to know more about the statistics relating to the benefits and risks and so this is where I sought out some more information.

  • THE HPRA states that 690,000 doses were given since 2010, with 230,000 girls receiving all doses from the vaccination.  This statement in itself is confusing because is this “690,000” referring to “girls who were vaccinated” or actual “doses administered” – keeping in mind that girls initially received three doses, and now receive two doses of the vaccine? Either way there was a total of 1099 reported adverse reactions since 2010. Taking the 230,000 girls who received all doses (as I am unsure about the 690,000 figure), does this not equate to a 0.48% chance of having a reaction (ranging from mild to severe)? And going one step further, from those 1099 reports, 648 were reported as serious (59%). This gives a 0.28% chance of having a serious reaction, does it not? 
  • In 2016 there was an estimated population of 2.5 million females in Ireland aged 0 – 65 plus. The HSE states that approximately 300 women in Ireland each year will get cervical cancer. The main age groups for getting cervical cancer are ages 25 – 65+,  equating to an estimated 1.7 million women. Using the same time span since the vaccination was released (2010 – 2017 = 7 years) I am using this as a baseline to calculate the risks for women of this age group for getting cervical cancer over the same period of time. So if there is an estimated 300 cases of cervical cancer each year this should mean that there is an estimated 2,100 cases over a seven year time span. If 2,100 cases are found in a population of 1.7 million women does this not present a 0.12% risk of them getting cervical cancer?

Correct me if I am wrong in my maths – but do you see the lengths I go to just to be able to weigh up the risks and benefits of giving the vaccination? I couldn’t even figure out the statistics given in relation to the number of doses administered and the number of girls who received it. No parent should have to try to figure this out. I still haven’t figured it out, so please don’t go on my maths to inform your decision.

These statistics should be made very clear in the HSE information leaflet and in their campaigns, if informed consent is to play a part in it. 

I also did some more research on the topic of cervical cancer itself – not HPV – and what I found is in the US they have a had a steady decrease of 2% per year of deaths caused by actual cervical cancer. “Deaths from cervical cancer in the United States continue to decline by approximately 2 percent a year. This decline is primarily due to the widespread use of the Pap test to detect cervical abnormalities and allow for early treatment.”

They do not include any evidence that the vaccine has played a role in this. This now leads to my next observation.


Observation 5)

  • HSE States: “While the vaccine protects against 7 out of 10 cervical cancers, it is still important for girls to have regular smear tests when they are adults.”
  • PIL States: Vaccination is not a substitute for routine cervical screening. You should continue to follow your doctor’s advice on cervical smear/Pap tests and preventative and protective measures.”

My thoughts: While both leaflets promote screening, the HSE states: “It is still important for girls to have regular smear tests when they are adults”. Why do girls have to wait until they are adults for screening? I may sound stupid in asking this, but I am completely genuine in my query. If there is a 2% decline in deaths caused by cervical cancer annually in the US alone primarily due to screening, then why wait until they are adults? If the risks of getting cervical cancer are so low under the age of 25 as stated by the Irish Cancer Society  then why are teenagers being vaccinated so young? Why can’t they wait until they are 18 so they can consent themselves? Furthermore, the statement “protects against 7 out of 10 cervical cancers” implies the possibility that the vaccination may not be 100% effective in all cases which contradicts the HSE’s other definitive statement in the leaflet that the “vaccine protects girls from developing cervical cancer when they are adults” as seen below in my next observation.


Observation 6)

  • HSE States: “The HPV vaccine protects girls from developing cervical cancer when they are adults.”
  • PIL States: “The duration of protection is currently unknown. Longer term follow-up studies are ongoing to see if a further booster is required…”

My thoughts: It would seem by giving my girls this vaccination based solely on the information provided by the HSE leaflet that my children would not get cervical cancer when they are adults, but the PIL differs in this regard: “the duration of protection is currently unknown”.  Again, I find the definitive statements in the HSE information leaflet somewhat misleading. I would be genuinely afraid that women may not feel the need to get smear tests because they had the vaccination with a belief they were safe. A decrease in the uptake of smear tests, I feel, would have a very negative impact on the positive work that has already been done.


Observation 7)

  • HSE States: The HSE are offering the vaccination to girls in first year because the vaccine works best when given at this age”.
  • PIL States: “Gardasil is intended for adolescents and adults from 9 years of age onwards.”

My thoughts: There does not seem to be any evidence available in the leaflet which shows the vaccine works best when given at this age – and the PIL only states it is intended from 9 years old onwards. The only explanation on the HSE HPV website  in relation to age is that the vaccine is given to teenagers in schools because “there is scientific evidence that vaccine uptake is higher especially amongst teenagers.(May 2017). Data from the UK found that immunisation through a school based programme achieved an uptake rate of 80% compared to 60% from GPs.” I find it interesting that they do not state the medical reason they give it at this age.

“Increased uptake” does not equal to “the vaccine works best when given at this age”. I would like to see more evidence relating to this statement.


Observation 8)

  • HSE States: ‘There are no long term side effects caused by the HPV vaccine’. 
  • PIL States: “The duration of protection is currently unknown. Longer term follow-up studies are ongoing…”

My thoughts: In 2010, at the start of the vaccine programme, Dr Kevin Kelleher, Head of Health Protection with the HSE said: “The clear impact of the programme in the prevention of cervical cancer will most likely be seen in 20 to 30 years.” Impact can be both negative and positive and, in my opinion, if it will take 20-30 years for beneficial evidence to emerge then does not apply to long term side effects too? Additionally, most recent studies as highlighted in The Journal’s Fact Checker have shown that after 9 years from administration of the drug there is no evidence of  cervical cancer, which is great news for women who received the vaccination. But it is important to note that if girls at the ages of 12 up to the ages of 24 are given this vaccination then just 9 years later it still only brings them to a maximum age of 33 – meaning they are still outside the highest risk age groups of 35 years plus.  I would like to see what time frames constituents as “long term” in clinical trials  and would also like to see more evidence on the benefits and side effects within this timeline. Furthermore, an audit of the HSE leaflet against 6 other countries HPV leaflets was performed in June 2017 and it found that “The Irish leaflet is also the only one to explicitly state that there are no long term effects caused by the HPV vaccine…[yet,] there is no reference to long term sequelae in any of the other publications.”

So why is it stated in the HSE leaflet that there are no long term side effects but is not stated in other international leaflets?

I might sound like I am nit picking, but these are genuine concerns for me. I do not like to feel confused. I particularly don’t like it when I have to question a “factual” medical document. Either way, all of this all leads to my most important observations below 1) possible adverse reactions 2) when/when not to give the vaccination 3) interactions with other drugs/vaccinations.


Observation 9)

HSE States: Side effects that can happen, but pass in a day or two include:

• Occasionally girls faint after getting any injection. Girls will be advised to sit down for 15 minutes after vaccination which helps prevent fainting.
• 1 in 10 girls will have pain, swelling and redness at the injection site and/or headache.
• 1 in 100 girls will have nausea, pain in the vaccinated arm and mild fever. You can give her paracetamol or ibuprofen to ease any pain.
• Between 1 in 1000 and 1 in 10,000 girls will get an itchy rash or hives.
• Between 1 in 10,000 and 1 in 100,000 girls will have wheezing (bronchospasm).
• 1 in 1 million girls will have a serious allergic reaction.

PIL States: Like all vaccines and medicines, Gardasil can cause side effects, although not everybody gets them. The following side effects can be seen after the use of Gardasil:

  • Very commonly (more than 1 in 10 patients), side effects found at the injection site include: pain, swelling and redness. Headache was also seen.
  • Commonly (more than 1 in 100 patients), side effects found at the injection site include: bruising, itching, pain in extremity. Fever and nausea have also been reported.
  • Rarely (less than 1 in 1000 patients): hives (urticaria).
  • Very rarely (less than 1 in 10,000 patients), difficulty breathing (bronchospasm) has been reported.

Side effects that have been reported during marketed use include:

  • Fainting, sometimes accompanied by shaking or stiffening, has been reported. Although fainting episodes are uncommon, patients should be observed for 15 minutes after they receive HPV vaccine.
  • Allergic reactions that may include difficulty breathing, wheezing (bronchospasm), hives and rash have been reported. Some of these reactions have been severe.

As with other vaccines, side effects that have been reported during general use include:

  • swollen glands (neck, armpit, or groin); muscle weakness, abnormal sensations, tingling in the arms, legs and upper body, or confusion (Guillain-Barré Syndrome, Acute disseminated encephalomyelitis); dizziness, vomiting, joint pain, aching muscles, unusual tiredness or weakness, chills, generally feeling unwell, bleeding or bruising more easily than normal, and skin infection at the injection site.

My thoughts: There are many similiar side effects outlined in both leaflets but the main difference is that the HSE leaflet does not include the reported side effects during marketed and general use. This is extremely important to me, as these are valid accounts from end-users that have been reported to either the HPRA (or similiar bodies) or to the drug company itself. It is widely known that not everybody will report adverse reactions, and for those that do, it is often a lengthy process. I feel those reports are as valid as the proven side effects. No independent study in Ireland has yet been done on the girls who reported their symptoms, therefore how can the HSE leaflet state that there are no long term side effects? What’s more confusing is that the HSE leaflet changes its own definitive statement in the paragraph section from: “There are no long term side effects” to “There are no known long term side effects”. These are two completely different statements. Furthermore, the HSE leaflet does not include the side effects of taking the HPV vaccine with other vaccinations, as seen below in the PIL:


Observation 10)

  • HSE:  “The HPV vaccine can be given at the same time as other vaccines such as Tdap (tetanus, diphtheria and whooping cough/ pertussis vaccine) and MenC (meningococcal vaccine). If you give consent for these vaccines, girls will receive one vaccine in each arm at each visit.”
  • PIL: “When Gardasil was given with a combined diphtheria, tetanus, pertussis [acellular, component] and poliomyelitis [inactivated] booster vaccine during the same visit, there was more headache and injection-site swelling.”

My thoughts: Why are the side effects from administrations of multiple vaccinations given at the same time not included in the HSE leaflet? Also, why are the ingredients of the vaccination not in the HSE leaflet?


Observation 11)

  • HSE: Girls should not receive the vaccine if they:
    • have had a very severe reaction (anaphylaxis) to a previous HPV vaccine
    • are pregnant.
    • Please let us know if your daughter has an illness or condition that increases her risk of bleeding. You should delay your daughter getting the HPV vaccine if she is ill with a high fever.
  • PIL: Talk to your doctor, pharmacist or nurse before vaccination if your child:
    • has a bleeding disorder (a disease that makes you bleed more than normal), for example haemophilia
    • has a weakened immune system, for example due to a genetic defect, HIV infection or medicines that affect the immune system
  • Gardasil may not have an optimal effect if used with medicines that suppress the immune system.
  • Please tell your doctor or pharmacist if you or your child are taking or have taken recently any other medicines, including medicines obtained without a prescription.
  • If you are pregnant or breast-feeding, think you may be pregnant or are planning to have a baby, ask your doctor for advice before taking this medicine. Gardasil may be given to women who are breast-feeding or intend to breast-feed.
  • No studies on the effects on the ability to drive and use machines have been performed.

My thoughts: My three daughters all have weakened immune systems and one has been on  a serious medication which suppressed her immune system i.e. Methotrexate. This drug was not for a bleeding disorder. The HSE leaflet does not state anything about talking to health professionals if my daughters have weakened immune systems or are on medications which suppress same, which are not for bleeding disorders. Why is this not in the HSE information leaflet?


My Overall Conclusion:

It is this last observation in particular which leads me to disclosing my primary reason for not giving the vaccination to my daughters – YET.

Did the HSE information leaflet inform my decision? Yes, and no. I never want my girls to get cancer and so I feel any programme which aims to prevent this, is a good thing. Learning the difference between HPV and cervical cancer is also a good thing to note. However, if I had not read the PIL also, would I have known to tell anyone that my daughters had compromised immune systems, not related to blood disorders? Would a health professional have known not to give the vaccination based on my daughters’ conditions or medications, or would they presume it was only relative to bleeding disorders? Would I have known the vaccine may not have optimal effect if they took it while on immunosuppressant drugs?

I am also not giving it to them YET because I feel from doing this research that there is not enough evidence given to me by the HSE leaflet to show why it is given at the ages of 12 or 13. I really shouldn’t have to research this evidence myself – and as I said before many parents just do not have the time to do this. I do know that it is a primary responsibility for me to educate my daughters on sexual health and ensure they get smear tests as soon as they are sexually active – even if I have to pay privately for them, as they are not offered for free to women under the age of 25 in Ireland. I also know that HPV can be contracted without having sexual intercourse (e.g. oral sex, contact with genitals etc.) and this is why it is important for me to educate my daughters on reducing their risks of catching any STI’s, not just HPV. I would like my girls to be able to make a decision for themselves when they are 18 or older about whether they want the vaccination or not. This is only seven years away for my youngest – three years for my oldest – and considering there was no vaccination at all seven years ago in Ireland, I am okay with waiting that little bit longer.

By then, hopefully more independent long term evidence of both the benefits and risks will emerge to help them inform their decision.

By then, hopefully, their own medical conditions will have eased off too.

By then, hopefully the information provided for informed consent will be based solely on facts.

And that is my choice as a parent, for MY children. Not for your children, but for mine. I simply cannot risk adding any more possible health issues to what they have already. Does it make me a bad parent? Absolutely not. If anything, it is the complete opposite. I love my daughters with all my heart and will always do what I feel is best, using my knowledge AND gut instinct as a mom. 

Does it mean I am advocating or telling other parents to wait and not give it – absolutely not.

If a parent chooses to give the vaccine to their daughters now are they bad parents? Absolutely not.

We all care about the same thing – ensuring our children our happy, safe and healthy.

Any drug or programme that could potentially save lives is a good thing. I simply did this comparative research because I wanted to see if I was given FULL knowledge of the possible RISKS and BENEFITS before signing consent for the vaccine; remembering that the only printed information I was given was the leaflet from the HSE. I wanted others to know what was in both documents too, so they could also make informed decisions.

And these are my views based on this research:

  • I feel there was adequate information and images to educate people on HPV and cervical cancer in the HSE leaflet.
  • I feel the HSE leaflet was easy to read, from a literacy point of view.
  • I feel the HSE leaflet did promote smear tests as a preventative measure.
  • I feel the HSE did add appropriate links and contacts to other information for parents to look into.
  • I do not feel the format in which the additional information provided through links and QR codes were appropriate tools for parents.
  • I do not feel the HSE leaflet advocated enough the importance of reading the PIL prior to consent.
  • I do not feel there was enough information in the leaflet regarding the possible proven and reported side effects girls could experience.
  • I do not feel there was enough information given in relation to the interactions of other medications with the vaccine.
  • I do not feel there was enough information relating to weakened immune systems, other than blood disorders.
  • I do not feel there was enough information relating to further side effects when the HPV vaccine was given with other vaccinations.
  • I was not convinced from the information in the HSE leaflet (or website) that 12/13 years of age was the right age for the vaccine.
  • I feel the style and tone of language used in the HSE leaflet was emotive and some statements were somewhat contradictory and confusing.
  • I feel a list of ingredients of the vaccination should be put in the HSE information leaflet.
  • I feel the PIL should be given in printed format to parents along with the HSE leaflet.

Am I wrong in outlining my feedback about the information pack? I don’t think so. If I were part of a focus group, would this not be expected of me?

I do not feel I was given the full facts in the HSE leaflet to help inform my decision to give consent – or to even discuss it further with my health professional. It actually had the opposite effect. I read the PIL because I didn’t fully trust the information leaflet after reading it. I feel if the PIL was included in the information pack in printed format, maybe there would be a higher uptake of the vaccine – so as people would be able to consent with full knowledge – and trust what is being promoted to them.

From what I can see, much of the heated arguments online are actually related to this – trust and transparency. So many links to “research” are posted online by the public that it just becomes mind-boggling and overwhelming. Parents simply want answers as to why their children are sick since the vaccination. Other parents want to know of all the potential risks and long term evidence on its efficacy before giving it. Others are happy to give consent based on the information provided to them at the point of care.

Nobody should feel tormented or pushed into making decisions about their children. 

And finally, I just wanted  to add that I personally hate “stats and numbers” when it comes to patient safety. Every single percentage equates to at least one person – one human being. Should we not be aiming for 100%, all the time?

Taken from The Irish Times Facebook Page

For every percentage of persons whom suffered an adverse reaction, remember they are real people, with real experiences – they are not just numbers – and are just as important as the 300 women who may sadly get cancer.

Living with a chronic condition can impact on a persons whole life; from education and employment to relationships and mental health. Should they not be given as much help to overcome their situations as those who unfortunately were diagnosed with cancer too? We all have a role to play when it comes to our health and well-being. One of the toughest jobs in the world is being a parent, but it is made even harder if our children are unwell. It is absolutely okay to ask questions regarding their health and to ensure we protect and care for our children to the best of our ability. Children who now suffer with chronic conditions since receiving the vaccination should not be name called – they should be helped.

No parent should call out another for “not loving their children” simply because they differ in choices or opinion. And if anything comes from this blog, that is my key message – we all need to start working together, not against one another.

Remember again that this blog is what this is – my personal opinion. 

And whether you vaccinate or not, I will not judge you. All I ask is that you don’t judge others either.

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Rose of Tralee Touched on Important Topics in Healthcare

We, like so many other Irish families, sat down this year to watch the annual International Rose of Tralee festival, as held every year in the beautiful Kingdom of County Kerry.

As I sat down with my youngest daughter to watch the competition, I decided to scroll through my social media during the ads to see what others were thinking of it- and it was there I was subsequently met with hundreds of mixed reviews through the many comments posted online. Many people said they felt that this festival was an outdated “lovely girl competition” of sorts – others thought it was a “money racket” and some went as far as saying it was an “anti-feminist movement” – yet, nearly all of these people were watching it on their screens as they were posting their opinions online – and that was the interesting part for me – I know if I don’t like something, I certainly don’t tune into it, unless of course I’m doing research!

Anyway, taking all the negativity aside, the majority of people had positive takes on the festival, and it made me think about why I like it too.

For me, this festival not just celebrates our Irish culture; it also embraces the importance of immigration and the acceptance of us Irish people amongst other cultures across the oceans of the world. It puts a focus on the aspirations of young women across the globe – the judges do not focus on their looks, but moreso, their personalities – including the many trials and tribulations they and their families have overcome; their vision to make the world a better place; their ability to get on with others, and their attitudes to life in general.

Anyway, this year, I was personally moved to tears, on more than one occasion, when listening to some of the stories from these talented and knowledgeable women.

Winner of the Rose of Tralee, Offaly Rose, Jennifer Byrne, is a 24-year-old junior doctor currently working in the Accident and Emergency department of University College Hospital Galway. It was great to see a young health professional talk about how patients are understanding of the demands on health professionals in today’s world. Another inspirational story was that told of  the DONEGAL ROSE, Amy Callaghan, who talked about her own journey of mental health when going through her leaving certificate.

 

But it was one story, as told by the Florida Rose, Elizabeth Marince which really made me feel all the emotions that she herself showed on screen.

Coming on stage, with a genuine smile exuding from her eyes, she was introduced by host Daíthí as an employee of another well known Magic Kingdom – Disney World. My ten year olds daughters eyes lit up as she started remembering our family holiday there, back in 2015.

Elizabeth was asked questions about her family, and during this interview, the focus was put on her brother, Michael, who was at home with her dad in the USA. We learned that Michael was 30 years of age now but when he was born he was given little chance of survival – having had severe brain damage and numerous heart problems. Elizabeth went on to explain the difficulties that Michael had had growing up, and for them as family. She said that “normal” family holidays were not an option for them growing up, as many resorts did not accommodate for people with disabilities.

But then they went to Disney World, and this changed everything for them.

She said that Michael did not normally express emotions, but when at Disney she could see a huge difference in him. As a family, medications, appointments and the fact that Michael was disabled were almost forgotten about as they drank in the atmosphere of imagination. This brought back to me all of the memories of our once in a lifetime holiday there.

You see, our children have all had various complex conditions over the years, and even though we have a positive outlook on life at the best of times, I will not lie – living with illnesses takes its toll on everyone. The worrying, stress, constant appointments, medications and financial burdens can all too often wear down on a family unit.

But when we got to Disney, this all dissipated.

We have been to many theme parks over the years, but nothing was a touch on what Disney did to our girls – and to us, as their parents.

My girls eyes were lit up from the moment they arrived off the plane. As were ours.

But what made it so special, compared to other resorts? Was it the rides, the Disney characters, or the weather? The food, the shows or the water resorts? The boat right to the Magic Kingdom, the swimming with dolphins or the Hallowe’en parades?

Yes, these all came as part of the package, but what made it what it truly was, were the people and staff in Disney.

At every step of our holiday we were greeted with smiles and questions as to how their staff could help us. My middle daughter had required a wheelchair at times due to her arthritis – and we were all given fast track passes to the rides to ensure we didn’t have to wait long in queues.

At one stage we all got stuck 40 feet up in the air on one of the rides, which was really daunting and terrifying! The staff were extremely professional and reassuring throughout. But when we eventually were taken off safely, we could not get back to the deposit areas for the wheelchair as the evening Hallowe’en festivities had started and we didn’t have tickets to get back in that night. We decided to bring the chair back to the visitors enquiries area and upon explaining our situation, the lovely receptionist went back to her manager and gave us all tickets to the sold out world famous Hallow’een party!

We were gobsmacked – this gesture meant that we actually forgot about the panic we had experienced on the ride which had broken down.

Upon arriving home, we then learned that my husband had mislaid all the girls first Mickey Mouse “ears” and their Disney character autograph books. They were devastated. I called Disney to see if they had numbers for the taxi ranks, as this is where we thought they had gotten lost. But Disney told us that it would be like looking for a needle in a haystack, and so instead asked us for photos of the girls “ears” and who they had got autographs with.

A few weeks later, we received a package in the post – brand newly signed autograph books and the exact ears the girls had bought!

Even at home, we felt the Disney experience live on.

And, this is what Disney is all about.

It is about the atmosphere created by the people that work there. No job is too big, no one person is better than an other. Everyone is treated the same, and they go out of their way to ensure every is, not just satisfied, but actually happy. Nobody feels like they are any different when there – it was like Disney was built with a complete person-centred care approach.

Elizabeth finished her story by telling us that because of her own amazing experiences and memories, she had decided she wanted to give back to others, and as soon as she could, she landed herself a job in this favourite place in the world of hers.

And in healthcare, this is what the difference should be – not just patient satisfaction, but patient experience; not just being a health professional for the sake of it, but loving going to work every day to make a difference.

A must watch TedX video, Fred Lee describes this below. Fred had the enviable distinction of having been both a senior vice president of a major medical center and a cast member at Disney University. Disney recruited him because of his expertise in helping hospitals achieve a culture that inspires patient and employee loyalty. At Disney, he helped adapt and facilitate Disney’s healthcare version of its 3-day seminar, Disney’s Approach to Quality Service, and developed its newest seminar on Customer Loyalty. With an insider’s experience and a keen eye for cultural comparisons, he shared his insights with healthcare groups all over the country.

Ref: Patient Loyalty

And this is what we, the MediStori team, really care about.  Improving people’s experiences – holistically. Being proactive and engaging with our customers at every chance we get. There is so much more to a patient, than just being sick. As there is so much more to being a carer too.

They – we- are people too; with emotions, fears, aspirations and dreams.

And if our experiences were captured and fulfilled in a positive way to create a movement in healthcare, then this, I feel would make all the difference.

Let us learn from the discussions from these inspirational young women- and even better – let us learn from Disney 🙂

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MediStori is a perfect sentimental and practical gift for new parents

Nowadays, more and more of us are on the look out for unique gifts to give to a parent when a new baby arrives on the scene. The market for personalised clothing, pictures, story books, blankets etc. is at an all time boom. But one thing that has never gone out of fashion, even with all the technology on the market – are baby keepsake books.

As a mum to three daughters (and another baby on the way!) I loved these little memory books – almost religiously I would fill in all the important dates – the time they were born; their first haircut; taking their first steps; their first birthday. I would put photos, letters, hospital bands, their first tooth inside – every moment precious to me, a new mom.

Admittedly however (and I hate saying this!) the book which got the most attention – was that for my first born! 

With all the best intentions in the world to keep my second and third children’s booklets filled in and up to date, the reality was, the amount of time I had to devote to filling in memory books dwindled as time went by. I instead devoted this time to my girls needs. This seemed more important to me than filling in a book! My priorities had changed.

But I’ll tell you a little story that may resonate with other parents…

I had thought I had got away with not completing all of their books until one day my youngest, who had just turned 10, said she was doing a project in school about her baby years. I started panicking – her baby book was nowhere near as full as my eldest or second daughters – immediately the guilt kicked in. So before she got her hands into our memory drawer, I quickly started adding random dates and pulling photos from albums to put into her book. I even used different colour pens on the pages so it would look “real”.

Thankfully, my little white lie and fast thinking worked and the crisis was diverted – that was until my middle child decided to go look at her own book and I had to go through the whole process again. The joys of parent hood!

Now, I don’t think I’m the only one out there who has experienced this – and if I am, slap on the wrist for me – but I’m sure this is a reality for many. With all the want in the world to capture precious milestones, life gets busy: sleepless nights, school runs, housework, jobs, bills to be paid, homework and play-dates, to name but a few – a memory book is the last thing on our minds; never mind printing off all the photos stored on our smart phones! And truthfully, the books were mainly geared up to about five years of age so as they got older, I simply forgot about them.

But this is the thing – I learned the hard way how keeping track of a child’s milestones is actually very important. 

No parent ever thinks that their child could become sick – and nor should they – but when it does happen, that’s when we realise real life health records are needed. It didn’t even take a serious illness for me to realise this. I recalled how a simple trip to the emergency department threw me off and made me think: “I wish I wrote that down somewhere”.

Taking my first born as an example, at the age of seven, in 2009, she presented to hospital with a rash, vomiting and high temperature.

Upon arrival, I was asked questions like:

“Did she have a normal delivery/what weight was she at birth?”

“When did she crawl/eat/walk/talk?”

“Did she have all her vaccinations?”

“What operations, accidents or illnesses has she had?”

“Did she ever have chicken pox or measles?”

“When did you last give her paracetamol?”

With one child – this may be easy to remember – but add a few more to the mix and things can get quite blurred. Add the worry of having a sick child along with the tiredness of being up all night, and this makes things even more confusing.

And the thing is, these are questions are asked by most paediatricians, even for the most minor of illnesses and viruses.

Then came the next round of questions:

“Is there a family history of a, b or c?”

“Have your other children a history of…?”

“Have all your other children had up to date vaccinations?”

“Have you travelled abroad or visited other hospitals in the last two years?”

The list went on and on. I had no clue if I was giving the right information or the right dates for the right child – truthfully, and guiltily – I was winging it. Thankfully though, my daughter ended up being discharged, diagnosed with a 24 hour virus and she got much better over the next few days.

But the experience of feeling like a mom who didn’t remember her children’s medical history stayed with me. 

Wouldn’t it have been fantastic to have had a proper medical history book that could not only capture memories of milestones, but also of important health history? Especially in an emergency situation.

And that is what MediStori is.

MediStori is a modern and personal memory book where you can add sentimental photos, important milestones and memories of you or your loved one – while also tracking important medical history too. Parents can also store details about the pregnancy and other family’s history, and there’s even space inside to write a little letter to your newborn.

Over 50% of our customers buy MediStori as a gift for a new baby – many of these customers are actually grandparents. They often tell us how they wish they had kept a log of their own children’s health history, but hadn’t, which is why they were buying MediStori for their grandchildren.

MediStori is not something that should be stored away in a memory drawer for taking out at birthdays or “school projects”. It is an all in one family organiser, allowing parents keep up to four separate booklets for each family member inside – it is a diary which can help parents be grateful that they “wrote that down somewhere”. There’s also storage wallets for hospital/GP letters and results, so if a parent doesn’t have time to fill in the book, they can leave the letters inside.

Over the years, many new parents told us: “I will definitely remember everything about my child” so a number of years ago we ran an interesting focus group and asked new parents (children under one years of age) to sit alongside parents of teenagers (over 12 years of age).

We asked the new parents if they knew when their child was vaccinated or when their next one was due. All of them were able to answer almost immediately. We then asked the same question to parents of teenagers – 92% of them had difficulty remembering if their child was fully vaccinated and weren’t sure if their child was due any more in the future. This statistic stayed more or less the same as we asked questions about childhood illnesses, such as chicken pox or measles. One parent told us that her oldest child was travelling to the USA for college and they were required to have a full history of vaccinations, illnesses and accidents – the poor mom was at her wits end trying to pull all the information together. She had pulled out her baby memory book for him, which had helped her somewhat put the pieces together, but she made a statement which made many of the group laugh – she could hardly send her 19 year old to the USA with a blue ribboned baby book full of photos and first haircuts!

Another mom told us how when she was pregnant she was asked questions regarding family history of preclampsia and gestational diabetes, but her mom had past away when she was young so she didn’t have any of this information to hand.

This really opened eyes for the new parents in the room, and most of them started thinking differently about how they logged information about their child, and their family. It also opened the eyes for the parents of teenagers – they had completely stopped tracking any information about them.

You see, unlike a newborn memory book, MediStori is not just for babies – it is a booklet for life – and can be started at any age: from teen years, right through to old age. It is not a “babyish” looking book either and doesn’t come with pink or blue ribbons – meaning that when the child grows up they won’t be embarrassed if they need to bring it with them to health appointments, such as was the case for the child going to the USA. But we know that photos and precious family memories are just as important as medical history, so that is why we incorporated these features inside it, with loads of space to add personal, non health related milestones and memories.

Much like a memory book too, MediStori can be handed down through generations.

I know many might think  – we don’t need a health organiser – we’re not sick.

We are often asked: “Will I be insensitive to a new parent giving them such a gift?”

No, not at all. As an expectant mom myself at present, I would definitely prefer the practical gift over the sentimental. And the good thing is, MediStori combines both. Many parents who have received theirs, love it.

 

Leonora O’Brien: Mum, Pharmacist and CEO of Pharmapod uses MediStori for her beautiful new baby girl Fódla.

 

 

Colleen Cahill (11) pictured here with her own decorated MediStori. Her Mum Rachael finds it very helpful in managing her health history.

 

 

You see, health is not about illness, it is about wellness. It is part of our every day lives and when we are going through good health, we rarely think about it. But it is the times when we are not feeling so good when we may need a helping hand to help get ourselves or our loved ones diagnosed or treated.

We may need a helping hand in gaining a little bit of control in worrying situations.

Time is everything when a child is sick and having important information to hand can be crucial.

And giving that gift to a new parent can be invaluable.

“Why not pass down more to our loved ones than just photo albums?” 

 


To buy your own MediStori for yourself, or as a gift for a loved one click here to shop now

To see testimonials and endorsements about the MediStori click here