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Vaccinations and Consent: Where is the Transparency?

It’s just after 2 am, and my littlest daughter, age 8, has a temperature of 39.4 degrees Celsius.

She is very congested and coughing constantly – I know her allergies are bothering her too as she has suffered with asthma and allergic rhinitis since she was a baby. I give her two puffs of her prescribed inhaler – knowing I won’t get steroids at this time of night, unless I venture out into the cold night to find an out of hours GP.

As I reach to the medicine press, I wonder if I can give her a decongestant cough bottle, along with some mild antihistamine. I also have to give her some paracetamol.

I’m really uneasy about what to do and the pharmacist whom I rely heavily on to clarify situations like this is now closed, so I can’t ring him. I decide to pull out all the folded up information leaflets that come with each medicine.

I look for precautions and purposefully avoid the section which tells me about all the possible severe reactions that could happen, just from her taking these over the counter medications on their own – never mind mixed with other drugs.

I look to find what can’t be given together – and very quickly find my answer. No, I can’t give this cough bottle with her antihistamine as it contains similiar components. So I choose to give her the allergy medicine, as I know this will help stop the nasal drip which is probably causing the relentless coughing.

Though relieved that I had looked it up; made an informed decision about what to do and not put her life in danger, I am still frustrated that I can do no more for her. So going online I look for alternative solutions  – I end up putting a menthol rub on the soles of her feet to draw out toxins (this by the way does work!); I then strip her down to a vest, bring her into the smallest bathroom in the house, run the shower on high and proceed to use the steam circulating around the room to help open her little airways, all while putting cold cloths on her head to bring down her temperature.

Thankfully, after about 15 minutes my little girl is a lot more settled as the concoctions of medicines and alternative therapies start working, and she gradually falls asleep in my arms.

A day in the life of a mom, eh?

So why am I telling you all this?

Simply because not long after this happened my eldest daughter came home from secondary school with a letter asking my permission to give her the HPV vaccination.

I looked at the letter, turned it over, expecting to see a comprehensive list of precautions; possibilities of severe allergies and everything else that goes into the information lists in all the medicine boxes in my cupboard, just like the cough bottle I had referred to.

But no, there was no detail like this to be found. All that came with it was a small leaflet describing the disease that it was aiming to cure; the benefits of the vaccination, why we should give it and a small list of some mild reactions that could possibly occur, and what to do if this should happen.

This was all the information I had to hand and I was supposed to consent to giving my child a vaccination that was not only very new to the market – but also very controversial on a global scale – with even the Royal College of Paediatrics in America raising their concerns due to it’s possible connection with early menopause in teenage girls.

Added to this, I myself had had this vaccination before I was 25, and since having it my health has never been the same. I now suffer with arthritis, bradycardia and unrelenting headaches on a daily basis – I am now 35.

Now it could be said that these were going to happen to me anyway, and this could well be true, but I had a very clear reason for getting the vaccination – at the time I even paid €600 for it. I took it not because I was scared of getting cancer – I knew this could occur anywhere in my body at any time – I actually took it because I knew my girls could be getting it in the future and I wanted to see how I reacted to it.

So I documented my medical symptoms since the time of receiving it.

And yes, it was only about six weeks after receiving the last of the injections did I start getting severe headaches. Not long after; pains in my hips and knees.

Now the question was, was I really and truly informed when I got the drug?

The truth is, no I wasn’t.

There was limited published research on the vaccination at the time and the information I was given was that it was safe to take; reassured by my health professional too at the time. I was however very aware of the fact that it was new; that it was not widely being used and that I didn’t receive a comprehensive information leaflet about it. I also went online – truthfully I couldn’t understand what their company website were trying to tell me – it was all so scientific and numerical. I just needed something that I could read with normal language, but found it increasingly difficult to find this.

But I made a decision to take it anyway, and I am okay to admit that I don’t regret it to this day.

Because I know I will not give it to my daughters.

Is this because of my reaction to it?

Well, yes…and no.

I answer yes because my girls already have complex conditions and I would be afraid they wouldn’t be strong enough to handle another symptom (now knowing what I do) but I also answer no, because, regardless of my symptoms, there just isn’t enough non-biased research on the vaccination that will help me make a decision that I know I can stand by.

I cannot for the life of me understand how any vaccinations are given without a full information leaflet stating all of the probabilities prior to consent being given, yet you can’t buy a packet of paracetamol without same.

I understand there is a huge need to get populations vaccinated with contagious diseases that can wipe out communities in an instant, and fear mongering could prevent parents from proceeding with same; but this is still no excuse to not provide accurate data for informed decision making.

I do not feel any health professional ever, ever wants to harm patients and so I do trust what they recommend, but I still have the right to be given access to any resources that can further reassure me also.

As a parent, it is my sole responsibility to do what is best for my children, always.

And I was made acutely aware of this when not long ago, I met an amazing mammy who told me a story of her child receiving a different type of vaccination, which left her child with an extremely debilitating condition.

It wasn’t long into our conversation, when this lovely lady suddenly burst into tears.

“I just feel so guilty”, is what she said to me. Her child suffered terrible consequences as a result of this vaccination and she just felt awful that she sat her child on her knee and in her words “allowed” her child to be jabbed.

She felt she had directly harmed her child.

I was so emotionally choked up watching her tell me her raw feelings – I felt there was nothing I could do to help her, other than reassure her that she did what she felt was best for her child at the time, with the reassurance of her health professional telling her it was safe.

She was, is, a great parent. An amazing woman who hates to see her child in pain and not live a normal life. And yet, she blamed herself.

She didn’t fail her child – she was failed by the lack of transparency.

What makes it worse is when this lack of openness for this family in particular, along with many more who have come together with the same issues, continues as pharmaceuticals shut down their walls when they hear any inkling that their vaccination probably caused harm – this is an extremely dangerous game to play as not only are the family not getting answers, the research is not being collated by the companies, which could potentially make their drugs safer in the long run.

There are too many cases for me to disclose here of which the world already knows about – have lessons not yet been learned after these horrendous situations?

I feel so, so strongly that there is an ethical duty of care for pharmaceuticals and our health services to provide the exact type of information leaflets that are given with all standard drugs when asking parents or patients to give consent to all vaccinations.

On a final note, I just want to say that vaccinations, and pharmaceuticals, are a good thing – I am not against them at all.

But, and there is a but, NOT providing truthful non-biased clear information to help people make decisions about their bodies is not now, or ever, okay – and if anything is an extremely unsafe practice in relation to patient safety. Without the medicines we have in our lives many of us wouldn’t be alive today. But without accurate data, medicines can not be improved upon. Money should never come into it.

And on this, I for one, from now on, will not “do what I am told” unless I am told what is the truth.

Authors Note:

If you want to report an adverse reaction to a vaccination, or any drug for that matter, in Ireland you can contact the Health Product Regularity Authority:

www.hpra.ie

If you feel you have been affected by a vaccination I also came across this useful resource and they may be able to help you too:

Irish Vaccines Injuries Support Group

https://www.vaccineinjury.ie/index.html