When medication costs

No one wants to have to medicate their child. No one wants to medicate their child if they could do something else.  And certainly no one wants to use medication on their child that doesn't work well especially if it's because it's cheap.

Nearly two years ago I visited a clinical psychologist to seek medication for Anthony for his ADHD. It was not something he went into lightly.  Anthony was seven years old and struggling with his ADHD - possibly more so than his autism diagnosis he had since he was four years old.

At one point he found his difficulties so hard, that he said he wanted to die.  Understanding his diagnoses and accepting who he was helped him mentally, and soon medication would also help him with his daily challenges too.

Anthony started on a long process of trialling types of methylphenidate, a controlled drug, to help him with his ADHD. As a controlled drug the dose started extremely low and we tried various types of releases (slow, extended, instant etc).   Over the next year, various doses, brands and releases were trialled and finally Anthony was dealing less with his ADHD and coping better with the challenges around his autism.

He still finds many things difficult, including school, but is able to understand better how he feels, what's he's have difficulties with and what he wants to help him.

We had finally settled on a brand and dose that we thought was right.  He felt better about himself, about his future.

As part of a shared service agreement and because Anthony is on a controlled drug, we get a monthly prescription that I have to request and collect from our GP every month.  One day I went to collect the prescription and found instead of our regular Brand A, we'd been given a prescription for Brand B.

I doubled checked with the GP - and was assured the medication was the same. With only a few days of medication left, we filled the prescription for the next month.

Anthony was more erratic for the next month, so when his medication need renewed, I requested our original Brand A.  Guess what I got?  Cheaper Brand B.

The next month I stood in the GP surgery until a new prescription for the original brand was eventually provided.   Every new month became a battle.  Each month, I only have a few days to request, collect and fill the prescription for Anthony.  I was now finding these days a battle and became stressed each time as I requested Brand A over and over again.

Eventually it came to our biannual clinical psychologist meeting and mentioned the difficulties to them.  I was not the only parent having difficulties.  Some had found the cheaper brand less effective. Some suggested they were upping their dose as a result.   Anthony is already on a high dose for his height, age and weight and I wasn't keen on giving him more with a different brand.

After this I talked to my GP with information I'd got from our clinical psychologist.  And today, for the first day in months, I turned up at my GP and found a prescription for our original brand.  It was still with a note asking us to monitor that this is still the better medication for Anthony - but that makes sense when choosing between a more expensive or cheaper brand.

What didn't make sense was changing medication without notification.   All the ups and downs over the last months could have been avoided with better communication and trialling the new medication properly.  And my heart feels heavy for those with other conditions that aren't getting the medications they need because they are expensive and how they may be struggling.

But for now. I'm glad that we, at least, are back and course.  And pleased that my son's welfare is back on track, even if it is with a more expensive brand of medication.  He is worth it.

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Supporting this week’s #wetalkmakaton sign of the week ‘To think’