Doctors refusing to put my sons formula on repeat prescription

[TheCatsMeow]

My 5 month old is on neocate, lactulose and omeprazole for milk allergy constipation and reflux. He is very allergic, I accidentally reintroduced Alimentum (the first allergy milk) and he reacted. His consultant says he cannot have any dairy until he is at least 2.

My doctors only give me enough neocate for 3-4 weeks. Every time I need more, I have to make an appointment. It's really hard to get a doctors appointment, I have to take him into the surgery where there's ill people spreading germs and take up an appointment, wasting everyone's time.

I've asked for it to be put on repeat and told "no because it's expensive" "the hospital should prescribe it". But it's obviously more expensive to have me keep booking appointments for it! The hospital won't prescribe it they write to the GP.

AIBU to think this is a bloody joke? It has to be ordered in so I have to guess when it'll run out, attempt to book an appointment and usually can't get one when I need it and if it's too early they question why I need it, order it at a pharmacy and wait until it's in, by which time if my son decides he's really hungry we almost run out.

[Oldraver]

I was told on more than one occasion that my son would grow out of it. Which he did eventually (aged 2), but how is that a solution at the time?

While this is usually true, I think it allows GP's to cop out of taking it seriously.

FWIW my DS has Reflux and had CMPA... By the time he was 3-4 months old he was vomiting blood due to the severity of his vomiting as he had damaged his oesopahgus. So no, 'he will grow out of it' doesn't cut it.

He was 7 before he could tolerate cow's milk as an ingredient. We still dont know if he will tolerate a large amount of milk as he just doesn't like it and still has soya. As a result he doesn't like cream, custard or the like

[StarlingMurmuration]

Will DS can eat yoghurt, milk in anything cooked (eg cauliflower cheese), butter on toast, cheese, biscuits, anything really now except milk itself. Even a little to drink brings out his symptoms. He was diagnosed with CMPA at four months, he's now 14 months. Our paediatric dietician says this isn't uncommon, so I suspect it's you rather than the parents who don't understand the condition.

[Jibberjabberjooo]

I've seen parents walk into a pharmacy with a prescription for milk for CMP intolerance with the child chomping on a yoghurt tube

Actually there was a point when we were trying to wean ds back on to dairy when he could tolerate small amounts, such as a yoghurt or a piece of cheese but not the volume of a full bottle of milk without being ill. So don't jump to conclusions.

[LavenderRain]

Lots of babies where I work (nnu) go home on Neocate. We give them a tin to go home with and a letter for the GP for a repeat prescription. Have never heard of any problems.
By the way the tins are tiny, alot smaller than your Aptamils/SMA

[blueteapot]

GPST3 here - imho if paeds have asked for a particular formula and theres a letter through then it should be on your repeats until after your next review

I can see the GP wanting to review you from time to time still though a) to check your baby is thriving on the new milk and b) to redose your other meds by weight as baby grows eg omeprazole

[toptomatoes]

One of my DC was on special high calorie formula (infatrini). We did have it on repeat but also found a pharmacy that could get it in the next day. Is there another pharmacy that can order it so it is available more quickly?

[Pilgit]

There is another option for the GP and pharmacist. I take a really expensive medication and so GP has produced a timed release prescription. I got 3 in one prescriptionsimple but only received the first months worth. I simply go and pick up month 2 when I am close to running out. That way the GP doesn't have the budget hit all at once and the pharmacy can order it in time to fill the prescription. This could be an alternative solution for the GP.

FWIW your GP is being a knob. You don't need the stress of thinking you might run out every couple of weeks.

[WillSomebodyThinkOfStefan]

My fraud reference was to the sale of prescription medicines on e-bay, not to the yoghurt tube chomping - that is the parents not understanding the condition; both need to be addressed.

Handing out £200 plus of baby milk per month does need to be monitored - you just need to be organised and ask your pharmacy to order in advance.

[TwoLittleBlooms]

Will the parents you talk about with their children chomping on yogurt tube doesn't mean they are defrauding the NHS (as your post is implying) - my daughter is currently on a milk trial - we are taking it step by step under the guidance of the dietitian - currently she can handle yogurt, cheese (foods/milk items on the milk ladder) with no ill effects anymore so I feed her these items but I am not defrauding the NHS by doing so - she can't handle full blown milk - hence still the need for pepti (prescription formula), she also has an egg intolerance (among many others) but can handle it in cake but give her omelette, scrambled egg etc - apparently according to the dietitian it is to do with the way the proteins are built/formed/altered (she has cmpa - cows milk PROTEIN intolerance - the protein is the issue and if that is altered then it may be possible it to be handled by the body. Pfft.

[mrmakerwastespaper]

No no no. Completely unreasonable. I'm sat here (having not read all the comments as I'm feeding baby) Neocate. I feel your pain. My GP was a bloody mare until I got our Paed and dietitian on the case. I rang the clinic and they wrote a stern letter to the GP stating my daughters need for the milk. My dietitian happens to be a close friend too and she said it's not the first time they've had to do it and probably won't be the last.

I should say for others who won't know- these tins are tiny (400g) so if you have a baby who isn't yet weaned you'd probably get through one in about 36 hours and the majority of pharmacies have to order it in which can take 24h so it's always a battle to make sure you have enough. Not like you can nip to the shop and just pick up a spare.

I get 8 tins a month and it just about sees us through.
Hope you get it sorted OP.

[TheCatsMeow]

The number of tins is fine it's having to make an appointment to get more. I have to guess when he needs it (he's fed on demand) and then wait for it meaning we get close to running out

[WillSomebodyThinkOfStefan]

To be honest 12 tins seems reasonable - you wouldn't go and buy 12 tins of baby milk at once.

[TheCatsMeow]

Will they don't though they just give it to me, unless I ask for it too early and then they won't.

I get 12 but it only lasts 3 weeks

[WillSomebodyThinkOfStefan]

It's not Boots fraggie - the GP is controlling the quantity. We have patients that get two tins and some that get ten - It depends on the prescriber.

[WillSomebodyThinkOfStefan]

It gives the GP the opportunity to talk with you and review. I've seen parents walk into a pharmacy with a prescription for milk for CMP intolerance with the child chomping on a yoghurt tube.

There needs to be a better system, but the reality is that there isn't and your GP is trying.

[fraggle84]

We have neocate on repeat prescription and get 12 tins at a time (lasts 4 weeks)

It's automatically ordered into boots and when we pick it up we tell them when we'd like to collect the next lot and it's always ready,

To begin with we were given 6 tubs but I asked for 12 so always had a months supply instead of going in every 2 weeks

Try boots pharmacy?

[TheCatsMeow]

Will but if I was going to do that how would forcing me to go to the GP stop that?

[WillSomebodyThinkOfStefan]

isn't not insight...

[WillSomebodyThinkOfStefan]

This is what happens to prescriptions medicines:

www.ebay.co.uk/sch/i.html?_from=R40&_trksid=p2047675.m570.l1313.TR10.TRC0.A0.H0.Xneocate.TRS0&_nkw=neocate&_sacat=0

www.ebay.co.uk/sch/i.html?_odkw=neocate&_osacat=0&_from=R40&_trksid=p2045573.m570.l1311.R4.TR11.TRC1.A0.H0.Xaptamil+.TRS0&_nkw=aptamil+pepti&_sacat=0

www.ebay.co.uk/sch/i.html?_odkw=nicorette&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H0.Xdiprobase.TRS0&_nkw=diprobase&_sacat=0

www.ebay.co.uk/sch/i.html?_odkw=gaviscon&_osacat=0&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H0.Xgavison+infant.TRS0&_nkw=gavison+infant&_sacat=0


Plenty of the photos have been taken in peoples houses. FB groups are full of similar too - It's fraud pure and simple and the NHS cannot afford it.

That is why the GP wants to keep a tight control on prescribing, I'm not saying you would do it , but plenty of people do - Your GP insight refusing to prescribe, he is just monitoring what you get.

[bringmelaughter]

Seriously don't struggle on. Contact consultant and/or practice manager and if no joy CCG. This is easily solved but you need to speak to the right people.

[TheCatsMeow]

Thanks everyone I spoke to the pharmacy and they've said they'll order an extra tin in so that's something.

[DPotter]

Could this be a time to get your HV on side ? She / he probably will not be able to prescribe but might be willing / able to talk the GP in to being a little more reasonable about how much formula they are willing to prescribe.