“The ones that are given from here [hospital] are always different from the ones that the doctor [GP] gives me. Like packaging and even the colour of the medicine in some cases which can cause a little bit of ‘which one’s that?’ sort of thing.” Mother of Patient 23 prescribed oral clobazam, chloral hydrate, topiramate, gabapentin, senna, brivaracetam, potassium chloride, levomepromazine, omeprazole and Movicol®.
Parents also identified difficulties around the storage of medication. These included the space available, maintaining a suitable storage temperature and securing the medication away from other siblings:
“I have, you'll see I've got drugs cupboards and I keep it there so it's where to put it at home away from the other children. Our result to build our own cupboards at height. You know, some of my friends have bought metal cabinets and things. So it’s where to keep it can be a problem.” Mother of Patient 9 prescribed via gastrostomy senna, Movicol®, paracetamol, carbamazepine, levetiracetam, omeprazole, buccal midazolam, inhaled oxygen, rectal phosphate and sodium citrate.
“Definitely the worry of the other children in the family getting hold of them. Particularly now that she’s on [buccal midazolam] because it has to be at hand but it’s a dangerous,
dangerous drug and we have a three-year-old. That worries me.” Mother of Patient 9 prescribed via gastrostomy senna, Movicol®, paracetamol, carbamazepine, levetiracetam, omeprazole, buccal midazolam, inhaled oxygen, rectal phosphate and sodium citrate.
5.4.10 Experiences associated with changes to the brand and/or manufacturer of the medication
Few participants described any challenges if the brand or manufacturer of their medication changed. Some described intolerance to different brands. Those on medication that requires them to maintain the same brand where aware of this need although in one case the
community pharmacy was not consistent with the brand of sodium valproate and carbamazepine supplied:
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“We have to try and keep to the same brand but we've found a lot of community pharmacists try and do it, give us a different brand. Even, to the point now the actual GP puts it on the prescription, Epilim only and Tegretol only. Also, as well, Epilim liquid and syrup they get interchanged. Luckily, they don't have a major issue with her and she can...it's just the syrup isn't good for her teeth, it's quite sugary and quite think to dispense to her. However, we do find one week we'll get liquid and another we'll get syrup but obviously it's what they can get in. So yeah, that's another problem.” Mother of Patient 24 prescribed oral sodium valproate, carbamazepine and inhaled salbutamol.
Others described an uncertainty about whether they were receiving the correct medication when the manufacturer had changed, difficulty using the correct name of their medication when making requests for further supplies:
“There was one change with his Creon packaging and I was a bit wary, I didn’t know what it was because it had got foreign writing on and I was a bit...but when I asked they said they'd changed their manufacturer but it's literally the same stuff but it’s a different packaging so it was ok.” Mother of Patient 14 prescribed oral multivitamins, vitamin E, ranitidine, pancreatin, nebulised sodium chloride, salbutamol and colistimethate.
“I'm worried that it's not the same. It sounds stupid but it was the hydrocortisone bottle and it came out pink. And she normally has clear. On the label it was another labelling issue as well. But combined with the fact that it was pink and it was labelled up as hydrochloric acid or something which it clearly wasn't but it was that combined with that I was like no I can’t accept that. I took it home, looked at it and I had to go back to the pharmacy, I'm not sure that that's what that is so you're going to have to have that back and get me another one” Mother of Patient 21 prescribed oral desmopressin, levothyroxine, hydrocortisone and subcutaneous somatropin.
“If I order to my GP the receptionist will tell me, I will tell the receptionist I want this one, it hasn't changed but it's actually the actual chemical name and then the label name that is a bit sometimes confusing. I would say ok I want Septrin she will say do you want the
cotrimoxazole. I don't remember the exact name on the bottle but...it's cotrimoxazole that one. Names haven't changed in the label. The names stay the same but the GP reception will say which one do you want we need the chemical name. They don't go by the label name they go by the chemical name.” Father of Patient 20 prescribed oral omeprazole,
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One child’s parents described receiving different formulations of captopril which had both different storage requirements and different strengths without being informed by their community pharmacy leading to a risk of incorrect dosing:
“Captopril is a funny one because again, I don't think it bothers us that they change it but when they don't tell us they're going to change it and we pick it up and think well hang on we had ‘fridge’ last month so why now have we got ‘cupboard’? And you’re used to the boxes, you’re used to what they’re supposed to look like when they come and used to reading the labels about how you’ve got to take of that so when it comes and it’s a different box and a different packaging it like well, what is this one? We don’t even know what it is half the time” Mother of Patient 15 prescribed oral captopril and inhaled salbutamol.
“And like I say, the strength-wise if we happen to have to pick a bottle up and it's a different, like I said earlier, it's not a problem again but it's very confusing going from 5mL to 1mL even though it's the same medication.” Father of Patient 15 prescribed oral captopril and inhaled salbutamol.
5.4.11 The ability to administer/take the medication exactly as directed by the