AIBU to think the GP just needs to issue the prescription?

[lawandgin]

Not sure if this is an AIBU, but donning my hard hat and posting anyway.

DD is 4 months old and has suffered terrible reflux since she was a newborn. We're all getting through 3+ sets of clothes a day, I'm constantly worried about how much milk she's actually keeping down and it's very stressful all round. For context, she was small for gestational age weighing 5lb 8oz when she was delivered at 38+3. She lost 8% of her birth weight and took over 3 weeks to regain it.

Just over a week ago, we ended up in A&E when she just would not stop screaming. I'm talking 7 hours. The long and short of it was that they thought it was a delayed reaction to her 16 week vaccinations, but the doctor said we needed more support with her reflux and that she likely had CMPA. Knowing that she wouldn't be a priority on the NHS as she's gaining weight and there's a several month long waiting list to see a paediatrician, I paid to see a private paediatrician the two days later. He confirmed he thought she had CMPA and needed dairy free milk and also omeprazole to treat the reflux. We happened to have some dairy free milk left over from a previous trial, so were able to put her straight on that and we saw a huge improvement in some of the other symptoms, but the reflux remains. The doctor prescribed omeprazole privately and wrote to the GP and asked them to continue the prescription.

The pharmacy ordered the omeprazole off the back of the private prescription, but it's £400 for a six week supply. I requested an NHS prescription for the same on Wednesday, chased it twice on Friday (each time being told it would be done that day - their turnaround time is 2 days) and it STILL hasn't been done. The doctors haven't phoned me to explain the delay and neither we nor the pharmacy can understand what they're playing at. I have a sinking feeling they're going to refuse the prescription due to the price and I'm ready to do battle with them on Tuesday as DD needs this medication and we simply can't afford £400 every six weeks. Especially as I'm only on SMP and with bills going through the roof.

So....AIBU to think the GP is out of order for not completing the prescription within their specified time frame and AIBU to think they shouldn't refuse to prescribe it at all (as I am anticipating)? Bonus points for tips on how I might tackle the conversation with them!

exactly. I think a lot of people don’t realise that the prescriber takes ultimate responsibility so it’s understandable they will want to be in the process

Thank you @Michellebops. It's really tough, but I'll keep fighting to get DD what she needs. I'm hoping she won't need to be on omeprazole for too long, I've never heard of a LO being on it that long so it's helpful to know it might not be a shorter term thing.

No it’s their timescale for a repeat prescription. This isn’t a repeat prescription.

And how exactly do you know that @Sirzy ? Do you work at my GP practice? If so, you should probably tell the three other receptionist who all told me it was 2 days!

Omeprazole is dependency-forming so I'd not want my child on that (or myself!). Coming off it can lead to rebound reflux. Just keep that in mind if you get more.

Sorry forgot to say, we were also given carobel which thickens the milk and encourages it to stay down therefore reducing the reflux symptoms. I don’t want to obviously give medical advice but i think you can buy it over the counter. Its cow and gate. Feel free to PM me, we went through hell and i ended up with really bad anxiety because of the feeding and on medication. reflux does also peak at 4 months so you might be going through this. It generally gets better after this point and also when they can sit up but i know this doesn’t help you in the meantime

I think the problem here is probably the timing more than anything else. You have no idea how many 'urgent' things arrive on GP desks the day or two before a bank holiday. I appreciate that to you this is the only thing that needs doing and should be quick and easy, but the practice also has the urgent tasks for however-many-other-thousand patients to deal with.

I appreciate that you're stressed and worried about your baby. But I'm sure this will get sorted. It just isn't possible to do everything at the same time. It may be that a prescription was issued late on Friday night and hasn't yet made it through the (supposedly-instant) electronic prescription system. Or it may be that this waits until Tuesday or Wednesday. It's not great, it's not ideal, but unfortunately it's the reality of NHS general practice at the moment - there is a never-ending stream of work and a limited number of people to deal with it.

I hope you get things sorted soon OP.

I think yabu. You didn’t even try the GP as a first line you just assumed a long wait for an NHS paediatrician. If things are as bad as you say you need to pay for the private prescription until the GP has time to review. If you had not already seen a dr then I would think it was unreasonable for the GP not to prioritise you but the fact is you have seen a dr and have a prescription so medically this is not urgent based on you not wanting to pay.

There's absolutely no need to be rude. I'm just trying to explain that as I understand it the system doesn't make it easy to dip in and out of NHS care because it can create even more unfairness if some people can pick and choose to jump the queue.

Imagine if you jumped the queue with a private diagnosis that cost you £300 and the consultant then recommended a series of follow up investigations (MRI, blood test etc) that might cost a lot more. Should you just pay for the consultation and then jump back to the NHS for the expensive investigations? I would say this is not what the system is there for. It is the same concept for expensive prescriptions.

We have carobel @Bunny2607 but thank you for suggesting 😊

Treatment paediatrician has recommended is against guidelines.
This might be contributing to the delay.

The NHS (NICE) guidelines are more stepwise with feed changes first, then Gaviscon and finally a 4 week trial of Omeprazole is suggested.

This works for lots of kids. Honestly. I know it might not feel like it at the moment. You don't need to jump in all guns blazing with all treatment options as then it is difficult to unpick what actually worked.

Also my GMC registration, my indemnity insurance, my career at stake.

I don't just prescribe (especially against national guidelines) because parents or a specialist whose opinion I didn't seek, who might not even work within my clinical network have asked for it.

It would be absolutely reasonable for the GP to refuse to prescribe. In the absence of proven oseophagitis or significant failure to thrive, there is no evidence for omeprazole or similar actually working and there is some evidence that the suppression of gastric acid in infants may lead to other complications such as increased food allergy. The research also suggests that it doesn’t reduce irritability. Basically it’s a bit like giving infacol, loads of parents claim it works but the evidence suggests it actually doesn’t. However at least infacol is fairly harmless.

I dealt with a senior gastroenterologist with my daughter who had a rare genetic condition and was NG fed and had reflux and he agreed that his colleagues prescribed omeprazole and similar because ‘we have to do something and this is something’ and that actually the only really proven treatment was gaviscon and recognising that 70% of otherwise healthy infants with reflux had cows milk protein allergy which could be managed.

Basically there is a small cohort of infants, usually preterm who need omeprazole and similar because they have severe reflux which is damaging their oesophagus and/or they are failing to thrive (they also will tend to have ongoing reflux into childhood) and there’s a much larger cohort of ‘irritable infants’ who have normal infant reflux and whose parents need support, who are more likely than average to have an allergy to cows milk protein and who require management in primary care and possibly a gaviscon prescription.

Honestly if your GP refuses to prescribe, your only option is a referral to a gastroenterologist on the NHS for a second opinion or another GP. If your daughter is failing to gain weight then that would be a much stronger argument for omeprazole.

Also gaviscon worked well for my very complex daughter as it should and you just balance the constipation with lactulose. Still safer than omeprazole.

@DownToTheSeaAgain can you not see how the concept of "jumping the queue" is absolutely ludacris?

At 4 months we’d tried medication and it actually made the reflux worse (apparently that’s common). Paediatrician’s advice was to move early to solids and overnight my baby was much more content. Hv was horrified but Dd is healthy and happy.

@AdelaideRo we have tried gaviscon. It constipated her to the point of rectal bleeding and also didn't work.

@Hoowhoowho I'm aware of the potential downsides and do not wish to use the omeprazole for longer than necessary. And of course if there's no improvement after a couple of weeks, we'll take her off it. But there are also risks with leaving reflux untreated as pointed out upthread. That's leaving aside the impact on us as a family. I'm a member of a lot of cmpa/reflux groups and it's hard to ignore the numerous parents who say omeprazole has worked for the LO.

@NeedAHoliday2021 she's definitely not ready for weaning. She still has her tongue thrust, can't sit up and anyway, we're supposed to have dietician support for weaning due to her cmpa. Especially as cmpa babies are more likely to have other allergies. Apparently there's a 9 month wait for an NHS dietician. FFS!

I think you need to read the full thread @HaPPy8. She's seen the doctor previously, plus 2 NHS paediatricians in A&E. How many more should we see before we're allowed medication that's been prescribed by an NHS consultant Paediatric gastroenterologist?

No. Please explain. You wanted to see someone for your dc. You thought the wait too long so you went private. You now expect super prompt ££ prescription from busy GP who technically has no requirement to convert back to free.

Thanks @Prestissimo. I do understand, it's often the same in my job. I'd be a lot more understanding if they explained this, but I've been told twice that the they aren't sure why it hasn't been done and it will definitely be done today (friday). The pharmacy have been equally busy, yet the pharmacist has phoned me multiple times and couldn't have been more helpful.

@DownToTheSeaAgain it's ludacris because we've saved the NHS time and money, all the GP has to do is issue the script, which is the next step according to NICE guidelines anyway. Where is the queue jumping if theyd be doing it ANYWAY regardless of whether she has been seen by an NHS or private paediatrician? Are we supposed to wait for her to start losing weight? Becoming dehydrated and needing a hospital admission for fluids? The fact is we're potentially being penalised for getting our daughter necessary medical treatment that the NHS ought to be providing themselves, but can't.

You are missing the point (the word is ludicrous by the way). All I am saying is that you can't pick and choose NHS care and expect continuity. If your DC went to a private school you couldn't nip to the local state one to take the exams to save the cost of this particular part for example. It's not the same of course but it is similar.

The reality is that the GP will probably honour your prescription but they are under no obligation to do so just because you FF the diagnosis by going private to get it.

Primary care professional here. Trying imperative is reasonable. Ask for the medication in tablet form, is significantly cheaper and can be dissolved in water and given via a calpol syringe orally. You will need to give the Gp your baby’s up to date weight in order to calculate dose. If they don’t have this that could lead to delays in medication being issued. A few days turn around for a routine prescription request from a consultant is standard.

Gahh * omperazole not imperative

I think you’re being unreasonable. They are only just over the 48 hour timeframe you were given. Your child has six weeks of her prescription medication so there is no sense of urgency. The reception team have reassured you it’s being dealt with. Give them the time to do this, don’t take up a precious post bank holiday appointment to deal with something that has no sense of urgency and is already in hand.