medication

How To Decide Whether To Have Surgery/Radiation/Take the Medication…

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I’m a member of lots of Facebook support groups for people with pituitary tumours and other chronic or long-term illnesses. One of the most common types of post is people saying they’re not sure whether or not to go through with whatever treatment has been recommended by their doctor. It’s a big decision, and not something that strangers on the internet can really answer for you! But that doesn’t mean there isn’t any process or technique you can use to make healthcare and treatment decisions… That’s why I’m writing this blog.

I want to share a process I learned doing National Childbirth Trust classes when I was pregnant, which I think is a great technique to follow to help you make these kinds of decisions. It doesn’t have to be restricted to use in healthcare settings, either.

The process is called “BRAIN” and it’s an acronym to help you to remember the questions you should ask about your recommended treatment. You should consider:

  • Benefits – what are the possible benefits of this treatment?
  • Risks – what are the risks of doing this?
  • Alternatives – what alternative options are there? Why are they not the recommended option?
  • Intuition – what does your gut feeling tell you?
  • Nothing – what would happen if you don’t do anything?

I think this provides a really great format to have a constructive conversation with your healthcare provider, and to ensure that you’re fully informed about your treatment. It can be helpful to take this list to your appointments so you can work through each question when you see your doctors (if you’re anything like me, you forget what you want to ask if it’s not written down!), to inform your treatment decisions.

I’ve also written previously about my experience of pituitary tumor surgery and making the decision to go ahead with surgery (twice) – you can read about that here.

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Vaccinations In A Time Of Coronavirus

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Little Man was due his second set of vaccinations this week, so on Tuesday all three of us headed out to our GP’s office. We were a little worried about taking him to the surgery and the risk of coronavirus transmission, as we’ve all been very careful to stay at home as much as possible during the outbreak, but the illnesses he was being vaccinated against (including diphtheria*, tetanus, whooping cough and meningitis B) are just as nasty, or even nastier, than coronavirus. Diphtheria, for instance, has a death rate of up to 20% in the under-fives, and 5 – 10% overall even with treatment. It might be rare in the UK but there were still ten cases last year, and one death.

Vaccinations in a time of coronavirus

When I set up this blog on WordPress, I followed a number of other mummy bloggers more or less at random, to see what people were writing about and how families are dealing with the coronavirus pandemic. I have subsequently already un-followed one blog that was pushing an anti-vaccination agenda. This included nonsense like claiming that it’s better for your child to catch measles so they develop immunity to it naturally, rather than through a vaccine. Of course, this rather misses the point that if your child dies from measles, they won’t get the chance to develop immunity either way.

Last year in Samoa, a measles outbreak killed 76 people, mostly children. Of the 1,249 measles cases in the US in the same year, 10% needed to be hospitalised. The average age of those hospitalised was just six years old. Even if your child survives measles, do you really want to run the risk of putting them through that when there is an effective vaccine?

I’ve never really understood the mindset of people who are anti-vaccine, but being a new mum and actively making the decision to vaccinate my child has got me thinking about it. Why do parents choose not to vaccinate? Maybe by trying to understand why parents refuse vaccinations, we can better address the issue and encourage a higher uptake of immunisations.

Why Do Parents Choose Not To Vaccinate?

It’s tough to watch your child have vaccinations

Firstly, I hadn’t appreciated how tough taking your baby to be vaccinated is. I thought I’d be fine with it – after all, Little Man was in intensive care for a while after he was born, and a couple of little injections should seem like nothing after watching him have a naso-gastric tube put in, various injections and blood tests etc. etc. But it was still tough! I had a little cry after I took him for his first immunisations. I think there’s a weird sense of guilt from the fact that I know what’s coming and he doesn’t – he’s being his usual happy self, in a room of new people and new things to look at, having some nice cuddles, and then bam! Someone sticks a needle in his leg, and he’s understandably upset. It’s not easy to see your child in pain, even very briefly, so maybe we need to acknowledge more that it can be difficult for parents, and provide more support and discussion of those feelings. Ultimately I was far more upset by the whole thing than Little Man ever was; once he had a cuddle he cheered up and was totally back to normal in about thirty seconds, probably wondering what his mum was looking so upset about.

Ideological reasons parents choose not to vaccinate

There are a lot of reasons why people choose not to vaccinate. Some religious groups refuse vaccines because of the way they are made, e.g. the use of animal gelatin. There’s also the fact that for those of us lucky enough to live in the developed world, there may simply be an impression that not being vaccinated isn’t much of a risk, because these diseases are now quite rare, or that the illness would easily be treatable if they did catch it. Ironically in that sense, vaccinations are a victim of their own success. These illnesses are only rare because we vaccinate and gain herd immunity. You have to wonder whether our experience with the coronavirus pandemic might help to change people’s perceptions on this one. There might not be a vaccine yet for COVID-19, but I’ll bet people will be queuing up to get it when there is.

Access to vaccinations

Finally, lack of education, lack of access to reliable information or access to healthcare are all potential issues. The anti-vaccination movement is big online and it can be daunting to wade through a deluge of online information about vaccines (including some heart-rending, but completely anecdotal stuff) to determine what is reliable and what is not. That makes it hard to make an informed decision.

Does the NHS do enough to encourage vaccination?

I received letters from the NHS reminding me to book my son’s vaccines, but it simply stated the type of vaccines he was due to receive, the timing of them, and a reminder to book the appointment. Given the concerns about falling rates of vaccination in the UK, this seems pretty surprising to me. Surely that letter is a golden opportunity to convince vaccine hesitant parents of the benefits of vaccinations? A few facts and figures would seem logical to include. After all, when I get a letter from the GP inviting me to have a smear test, it comes with a leaflet which aims to persuade me to have the test done. Given that vaccination benefits not just the individual child, but the whole population through herd immunity, should we not be putting a similar level of resource into encouraging childhood vaccination?

Little Man shortly after his 12 week vaccines

Your thoughts

What are your thoughts on why parents may refuse vaccination? Have you had any experiences which put you off seeking vaccination for your child? Let me know in the comments!

* I didn’t realise until writing this post that there are two h’s in diphtheria. I always thought it was dip-theria. You learn something new every day.