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!

No - you should have checked the price. You chose to go private.

Despite you saying you'll take on board you were U I'm guessing you still think you were absolutely reasonable and everyone else is wrong!

How much of a ‘choice’ is it really for people to go private when the NHS services are so rationed you have to wait a ridiculous amount of time to be seen? While suffering and deteriorating.

OP shouldn’t have had to go private. Nobody should have to do that.

When you presented them with a prescription and requested they order for you, you were entering into an agreement with them. If cost was a factor you should have asked. What prompted you to go to the GP to request a free supply due to the cost if they didn’t tell you how much it was??
the NHS won’t pay for that supply, that will be on the business owner, you think that’s fair? It’s also a total waste. if that’s what actually happened

The pharmacy ordered the omeprazole off the back of the private prescription, but it's £400 for a six week supply

did the pharmacy tell you this information? How do you know otherwise?

If she was entering into an agreement with the pharmacy to pay a certain price, the onus was on them to inform her of what it was and to get her agreement to pay that amount up front. They can’t keep her in the dark as to cost and then bind her to paying any amount, however unreasonable!!

The pharmacy told me they couldn't get it from their normal supplier and would contact another. They later called me and said they had managed to order it from another - that's when they informed me of the price. I've actually just spoken to the pharmacy and they couldn't have been more helpful. They know it's likely we'll be going back to the GP as DD is struggling to take the mups, so it won't be wasted. They also have other customers using it so you can all relax about wastage or people being out of pocket. Note also it doesn't actually cost them £400 - it costs them £100. The rest is added on for a private script. We're really lucky to have such a helpful and understanding pharmacy.

There are a few issues here. As a Dr who works in both NHS and private practice, I know first hand that there are a myriad of issues.

OP, I do sympathise as reflux/colicky babies are hard going. It’s also frustrating when you know there is something which might work but you can’t get it. I also, absolutely and without doubt, understand the frustration for waiting times. It’s not a situation anybody who works for the NHS is happy about, it is both frustrating and at times unsafe.

However, there are some fundamental misunderstandings of the system, of the role of private medicine and it’s intersection with the NHS and prescribing by GP’s.

Firstly, GP’s are not bound to prescribe something recommended by any specialist- either NHS or private. For one thing, we can (and do) make mistakes or perhaps not have all the information that the GP does. It’s entirely correct that the prescribed is taking Medico-legal responsibility, “the specialist said to” may provide some defence but would not absolve them if an error led to harm. Of course, they would also have to justify their decision NOT to prescribe something recommended by a specialist, but it really isn’t the case that specialist recommendation = GP must just do as they are told, no questions asked.

Secondly, if a private specialist recommends a prescription for a medication which is either off license or “non-formulary” (and by that I don’t mean BNF, I mean local formulary), or the formulation they have suggested is non-formulary, the GP may actually not be able to prescribe what the specialist has advised. Or they maybe able to do so but will have to justify it or seek an exemption. With really expensive treatments, occasionally it has to go to a special committee (aware it does not apply here). And if there is a cheaper option (I.e. dissolving contents of a capsule in water vs high cost suspension) they may well be obliged to try that first. There is some variation between local formularies, which is frustrating at times. GP’s prescribing patterns are scrutinised- nothing new- but deviations from local formulary/national guidelines etc, as well as use of high cost items are increasingly being flagged and GP’s being asked to look at/explain/rectify. So again, “the private specialist recommended” is not always an allowable reason. Even “nhs consultant recommended” isn’t always accepted (difference in cost between equivalent formulations isn’t something that is always familiar to specialists).

Additionally, technically speaking if the advice is coming from a private consultant, the GP should issue a private prescription. Historically, most GP’s will not do that if it is a commonly used medication, available on formulary and would simply put it through as “I assessed the situation and agree this is appropriate, I am happy to take on supervision of this medication” or similar. Similarly, blood tests, x-rays or any other investigation requested by a private Dr but done by NHS GP or hospital should also be charged to the patient as a private service. Again, in practice this has historically not been done. All of these things have been ignored and blind eyes turned- but I have noticed a creep in the amount of times they are being picked up on now. I know more than one patient whose GP was sent a bill for doing bloods for a private patient (all cases it is a specialist test which GP’s aren’t authorised to request without specialist back-up, so they had to state that it was a specialist request)- that cost had to be passed on to the patient. This has happened a few times now, so it is something which is beginning to be picked up and clamped down on in my area. I suspect that the very long waiting times is driving more people to get a consult in private sector and so this has provided the impetus for more observation/action.

Some patients are using the private sector to piggy back into a sooner appointment in the NHS- seeing a specialist who works in both sectors for an out-patient assessment and then being referred onto their list, thereby skipping the long waiting times. I understand why, I’m not criticising, but it is something which I know many areas are becoming much stricter with us as consultants about. I know one board who are looking at banning consultants referring their private patients onto their own NHS out-patient list. They would allow, for instance, an urgent referral for lifesaving treatment (e.g. following cancer diagnosis) or where treatment is not available privately (or not provided by the private sector locally).

All of this is just to explain why it’s not as straightforward as some posters think it is.

Thanks @jacks11, that's helpful info and I'll bear in mind for any future scenarios (of which I hope there will be none!)

@jacks11 your reply is so interesting and informed. The justification and hoops that GPs themselves have to jump through in order to essentially help a patient within the NHS is astounding. It just highlights how decimated the NHS is. It's clearly apparent that jumping back into the NHS after receiving a private consultation is going to become increasingly difficult and this is such a common situation. It's usually in my observation as a receptionist, a very ordinary person who has decided to spend their savings on accessing a consultation. This is the sort of person it will hit very hard.

How’s your daughter feeling @lawandgin ? I hope things are easier for you. You sounded beside yourself with stress and distress. My reflux baby had the most horrendous wail that was both heartbreaking and exhausting! It does get easier, I promise.

@highdaysandholudays

Yes, there have always been a lot of hoops in both primary and secondary care. Free at point of need care has many advantages, but it does (of necessity) create a need to heavily regulate what is provided and when, to triage and other measures to control costs. Or pay a lot more per head than we do (though there is a lot of arguments about inefficiency etc too-but I think that is not the biggest factor in our difficulties).

One way of controlling costs is to try to ensure that the most cost-effective formulation of a medication is used, for example, so that means that if there is a cheap (but perhaps slightly inconvenient) way of giving a medication and doing it that way is just as effective then that is what every prescriber is asked to do.

So, as an example here the omeprazole capsules can be opened and contents dissolved in water with this given to the child. The capsules cost 87p for 28 capsules (at least a month for most children) vs the liquid suspension (more convenient for parents to give, perhaps arguably less able to get dosage wrong- though I think with proper explanation that is not likely for the majority of parents) is between £106 and £206 per 75ml- so anywhere from £200-800 a month would not be unheard of (dose dependent). Now, I think if people were paying for their own prescriptions the majority would opt for the former, at least to try in the first instance (with most not having the option to go for the more expensive suspension as they simply couldn’t afford it). The problem is that because we don’t pay for them directly (or at least not the full cost of the prescription, depending on where you live) patients have no idea of the cost so they want the easiest/best tasting/insert other reason for preference here. So they can be quite put out when they don’t get their own way. And it really doesn’t help when we as specialists (who usually write to GP’s to ask them to prescribe) don’t always heed the formulary/think about whether that is most cost-effective, which sets patient expectations that this is what they should get. When GP follows local guidance, and sat prescribe same drug, same dose just tablet instead of liquid (for instance) or generic instead of brand, patients feel they are not following specialist advice and this sometimes leads to upset. This is something that I have become more aware of over recent years, even more so since entering private sector where patients are sometimes paying for their own prescription so do want the most cost-effective formulation, so it’s partly on us!

And if no-one tells them then it is hardly surprising that most patients haven’t got a clue how much each medication costs, so I’m not blaming anyone or finding fault. The main issue with telling patients is that, from bitter experience, the reaction to being told that they should try a cheaper (but equally as effective) medication can often be very negative and/or very angry.

With regards the controls being placed on private into NHS referrals hitting people who save for that private consult, yes it is true. But, playing Devil’s advocate, why should one person be able to leap frog the queue over someone with higher clinical need or who has been waiting longer on the basis that they could afford (even via savings) for a private consultation? The referral triage system exists to try to ensure the most severe cases are seen first- it’s not perfect, of course, and as I say I am more than aware that waiting times are horrendous in many/most areas, which is driving more people to follow the private out-patient consult to get referred into the consultant NHS list without the wait. I absolutely understand why patients follow this path and I’m not condemning anyone who does it. My point is more that if we are not applying that triage system fairly to everyone, then it creates another layer of unfairness and inequality which is something we are supposed to be trying to avoid.

Similarly, if you do go down the private route then I think we do need to look at the NHS then doing any investigations you require (to avoid you having to pay for them, as many are costly) and then taking those results back to the private consultant to act upon. I absolutely understand why people do it, and most people wouldn’t choose to pay if they could get a prompt NHS service. But I think we do need to be more clear and consistent about the division/intersection between NHS and private healthcare, rather than some people being charged and others not. Also, it is giving private healthcare providers a bit of a hand and I’m not sure the NHS should be used that way.

We as consultants also need to be careful about what we do- of course, once we’ve got a patient in front of us then we want to help them as quickly as we can and if they can’t afford to go down the private route fully, then that means trying to get them onto our NHS caseload. It would be hard to say to a patient who has paid to see you in desperation “yes, I can help you but it will cost £x. If you can’t afford that, then I can see you and do this treatment in the NHS but you’ll have to wait 3months/6 months/a year” because it isn’t “clinically urgent” when currently you can refer them into your out-patient clinic and they could be seen much sooner. I’ve done it and probably will do it again. The the volume of people in this boat is increasing. But I suppose the system has to take a wider view of what we should and should not be allowed to do. I.e. you can refer to your own list but they take the same priority as if GP referred (so if it’s urgent, they get seen urgently but not in a follow up rather than a new patient appointment). I don’t know, I see both sides. It’s a bit if a moral minefield for me!

I really sympathise with you. My daughter’s first baby was delivered early weighing 3lbs 6oz and had severe reflux once he was home. My daughter is a paediatric nurse and her husband a doctor but they still found it a challenge. Finding the right milk is the key to helping the reflux and taking omeprazole was also very helpful.

Simply phone your GP surgery twice a day to accelerate the prescription. Phone around 9.30am then at around 3pm and ask for an update. Be very polite but assertive. Use the ‘broken record’ assertiveness technique. Apologise for phoning again but explain you’re feeling desperate with an unwell baby. Offer to bring your baby to see a GP if necessary. At the end of each call, summarise what the next step is. This should bring results within 1.5 days at the most.

Baby is now 7 years, very healthy and doing great but his parents still find that episode painful. Best wishes.

@Teder we're not really much further forward unfortunately. She projectiles up the mups, so that's no good. GP asked us to try gaviscon again, again we are facing constipation and it doesn't work anyway, she's still choking on acid more than 2 hours after a bottle (although there is a marginal improvement in the immediate reflux, but not enough to counteract the downsides imo). The GP has taken the omeprazole suspension request to the ccg, should hear by Monday. In the meantime I've bitten the bullet and borrowed £150 to pay privately for a 28 day supply. It's not within our budget, but really what choice do I have? The GP annoyed me though, by first suggesting treatments we had already tried (clearly not reading the file) then suggested ranitidine (which they can't prescribe anymore!) And then telling me they couldn't prescribe omeprazole suspension. It was only when I said "well yes you can because I know you've done it for other infants) that he relented and said ok but would have to go to the ccg. I understand the constraints, but outright lies are not on. He would have happily let me go away thinking it wasn't possible at all. This week has been awful and I'm so so tired and on the edge of tears most of the time tbh. She's had her first dose of the suspension this morning, so fingers crossed we'll see an improvement in the next few days.

Oh and for the benefit of @BungleandGeorge, the suspension is sent to our pharmacy as a powder and the pharmacist made up the solution for me (although i could just have easily done it myself, the instructions are on the box and require only water and the ability to read and follow instructions). So it would be able to be sent back on a sale or return basis and/or kept for other customers without going off.

@jacks11 Thank you for the detailed explanation.

Yes I’m aware of what oneprazole suspension is. It’s a special, not from normal wholesaler and attracts a carriage charge. I’m not sure why you think they can just send it back and not be out of pocket. It’s also not a particularly popular item
I get the impression that you still think your GP must prescribe this item for you. They may doubt whether omeprazole suspension powder dissolved in water will be any more tolerable than a soluble MUPs tablet dissolved in water.

There will be a lead GP (might not be called that, I cannot remember the name) who you can contact if you don’t get any joy from the GP. If you google your local CCG, it’ll be there somewhere.

Poor baby 😔 really hope this gets dealt with…and quickly.

No, I don't think they "must", but I do think they should @BungleandGeorge - any doubt about tolerance or efficacy should be removed by virtue of the fact we had an amazing day yesterday, no choking on acid, vomiting much reduced, less irritable and she napped. She had over 4 hours of daytime sleep which is unheard of. The surgery's pharmacist is aware of this as she called me yesterday and is confident the ccg will approve. Not really sure what your problem is tbh.

Thanks @Teder - looks like we're on the right track. The surgery's pharmacist said yesterday if we didn't hear anything in 48 hours to assume the request has been approved. Nothing so far, so fingers crossed...

Personally I would question the cost . 6 weeks was £400 but 4 weeks was only £150 .

@whowhatwerewhy yes I wondered that too. I know they have at least one other infant who is prescribed it, so I wonder whether they gave them (via an NHS prescription) what they'd ordered in for us originally, and then ordered more from their usual (cheaper) supplier.

I would definitely find out I presume you had to get another private perception for 4 weeks as your original one was for 6 weeks .
Had the pharmacist advised you there was a cheaper supplier you might of waited a day or so for them to get it in .

@whowhatwerewhy not got a second prescription yet as currently awaiting ccg's decision on issuing an NHS prescription. If I don't hear anything by Monday, we are good to go with an NHS prescription 🙌

Oh I see , I thought your original perception was for six weeks. I never realised you could alter the quantity once it's been prescribed .

@whowhatwerewhy I think it was because we were asking for less, not more and it comes in 75ml bottles. I'll let you know how we get on with the NHS prescription.

It’s not a special order item at all, Alliance healthcare keep it as a stock item, we order it all the time and we can get it on same day delivery if we order before 12.
We can even return it back to them if we send it back within 3 days of ordering.