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.

[MaryPoppinsPenguins]

My DD was on nutrimigen and my gp was similar, and would only give me 3 tune at a time (and they're tiny!)

Eventually I had to order it online to have a reserve, as one weekend I actually ran out and had to give her formula and she reacted badly to it.

I ordered from the online pharmacy, it came sealed and it was fine.

I'd do the same if I were you, if only for an emergency.., as I think the effect is cumulative and after the formula weekend she was back to her screaming self for around a week!

[OohMavis]

Luckily I was able to breastfeed DD and spent two years totally dairy and egg free to produce safe milk for her. It was fucking hard.

I say luckily because I've heard similar stories in my area of issues with CMPA babies getting their milk on prescription. Doctors insisting that babies are UNDERFED, and weaned from formula at 9 months.

GPs ignorance regarding serious allergies really needs to be addressed nationally, it's going to end in tragedy if they're allowed to restrict essential formula like this

[donadumaurier]

OK, I had a similar issue with a prescription a few years ago (although not as completely essential as formula!) The question is WHY are they refusing to put it on repeat? Is it to review whether he actually needs it still or to control how much of it you're getting through, given the cost? If it's the first one, given they've said he can't have dairy until he's two, reviewing that situation every 6 months maybe, but every 4 weeks is just excessive. If it's the second one, why can't they just keep track of how regularly you're putting in the repeat prescription and call you in if they think there's a problem?

[MaryPoppinsPenguins]

I know why they restrict it though... My GP told me that people would put it up on Facebook selling sites. (Not sure what they fed their baby!!)

[TooMuchOfEverything]

What a nightmare! I'd email your MP. They are supposed to help people with stuff like this.

[OohMavis]

Mary not many pharmacies will take even sealed tins back for fear of interference/contamination, they have a strict policy here. I tried to give back three of the four tins of formula my DD was prescribed when she was diagnosed with CMPA (I was told to cook with it when weaning, she hated it). I put them on a freebies group and they were snapped up by two very grateful parents straight away.

Selling them though seems very wrong.

[writingonthewall]

I'm a GP and as long as it was recommended by paediatrics and your child was under regular review I would put it on repeat and give a months worth at a time, setting the review date for after the next paeds appt, then if I get a letter from paeds saying continue for another 6 months or whatever I'd move the review date. No need for me to see your child if a consultant is supervising. The only time I would refuse if it was just the parent's choice with no paeds input. I would complain, and it's not often I say that on GP threads on MN!

[TheWatchersCouncil]

That's really difficult. If this CMP allergy, then it is not going to disappear any time soon. Some kids grow out of it when they are 2ish, with the majority growing out of it within the 18 month 2 year period following that. (Unlike DD, who at the age of 5, is still CMP allergic....)

Anyway. You are going to be on Neocate for the foreseeable (hopefully the other drugs may be able to be reduced or stopped as your DC's system calms down). So it seems daft not to have it on repeat. Have it on repeat with a 3 or 6 month review if necessary.

[grannytomine]

I understand not wanting to order online but would the pharmacy order a tin that you could buy? I don't know if you need a prescription so may not work but it would obviously be a comfort to know you have a spare tin. If not ask at next hospital visit.

Different thing but we used to get hassle as my son was always breaking his glasses, cost to NHS, must look after them, oh yes most 4 year old boys always consider their glasses before doing anything. I mentioned it at a hospital appt and his consultant said he loved kids who were always breaking their glasses, the ones he wasn't so keen on were the ones who came in with 12 months old glasses that looked like they had never been worn. He gave me a prescription for 2 new pairs and said I could have more whenever I needed them.

[TheWatchersCouncil]

My GP told me that people would put it up on Facebook selling sites.

Really?!?!??? Is that really what the GP thinks? The GP thinks so little of parents, and patients in general?

In any case, if you are so insistent on selling this stuff on and have either faked your child's CMP allergy, or the allergy is genuine and you don't give a stuff, then even if you only get 6 tins at a time, you'll still sell them on.

DD was originally on Nutramingen, but then had to switch to Neocate. I sold her remaining tins of Nutramigen on Ebay (back in the day when you could) for I think it was £1 a tin - just enough to cover the listing fees, paypal fees and the seller fees. I just wanted someone who needed it to have it and make use of it.

[MineIsAGinAndTonic]

I do think you need to speak to the practice manager. If the consultant has recommended this it is massive cost and waste of GP's time to keep seeing you and the baby.
In the meantime, however, I would make sure you book your three-weekly appointments four weeks in advance. Use their system to your advantage.
Tbh, having only a choice of 2 days or four weeks is pretty poor.

[ZebraOwl]

What a pain. I have a long & complicated (over 20 items, don't need all of them every month) repeat prescription & getting it sorted out means trotting up to the GP surgery every month to collect it in person (though I now order it online) because there are invariably errors. Lots of my medication is expensive. I'm also on medication with a VERY high street value at a volume that appears ridiculous for someone my size (malabsorption & my particular genetic set up, 0/10, no not recommend). My GP surgery, however, unlike yours, put things on repeat for me. And my keep-at-home antibiotics aren't on my repeat, but will be prescribed for me when I ask for them - they just like to track my usage really closely.

So basically, there is faff-all excuse for what your surgery's doing.

• Ring your consultant's secretary & explain the situation, ending with a request for a letter to the GP stating that a repeat prescription for [at least] X amount every Y weeks (to increase at your request). I recommend writing yourself a list of what you need to say so that you don't find yourself hanging up & going "oh pants, I forgot about..." If you have an email address for your GP it's ok to request the letter be sent by email as well as by post. Request it be done urgently & stress your fear that you will run out of formula.
  
• Ask for a meeting with the Practice Manager. Again, don't be afraid to go in there with a list. Tell them that if necessary you will make a formal complaint about this matter (information on how to do so here: [link]www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx[/link] but tbh the mention of it should be enough...)
  
• If necessary, do make that complaint (but obviously I'd suggest skipping over the practice-level one as both GP & practice manager would be involved by that point) - but am as sure as one can be that it won't come to that.
  
• Settle on a pharmacy to be "your" pharmacy, if you haven't already. I'd suggest a smaller local/independent chemist rather than a great big branch of Boots, if possible, so you can get to know the pharmacist[s]. That way they'll probably start to order the stuff in so it'll be ready to collect when your prescription gets done: even when the repeat gets sorted out you will want a nice quick turn around on the formula being ready for collection.
  
  Good luck getting it all sorted out. I'm really very not at all a "you must complain!" person (normally I'm the one being told I need to, feels a bit weird to be on the other side of this) but in this instance you clearly need to do some assertive advocating for your son. I have an anaphylactic allergy to all dairy products so I find myself really frustrated when I hear about parents struggling to get formula for CMPA babies...

[May09Bump]

Speak to your allergy consultant, ask them to write a letter to GP stating that your baby will be on neocate until reviewed by the consultant, and detailing the next appointment date. Ask the consultant to request it to be on repeat until this date.

It is a cost based issue, rather than a medical review by the GP. I was told this by my GP.

My allergic DS is now 6 and I'm due with my second, I breastfed last time - but need a formula backup just in case and I'm terrified that the new baby will be allergic, so I am paying for a couple of tins of Neocate as I know it will be a fight to get them in the beginning.

[ZiggyFartdust]

Really?!?!??? Is that really what the GP thinks? The GP thinks so little of parents, and patients in general?

Why wouldn't they think that, when people actually do that? They'd be mad not to a least consider it. People sell all kinds of stuff they get for free/on prescription.

[bringmelaughter]

Contact your consultants secretary. Get a strongly worded letter to GP with how long consultant expects the need to continue and when a review will be needed.

If surgery don't respond then contact the surgery practice manager. If still no joy contact your CCG (you should be able to google contact details for your area).

[catinpajamas]

Are you under a dietician through your hospital? They can usually prescribe neocate. However, they are often reluctant to do so as it then comes out their budget hence why GPs are the 'normal' point of call. Passing the buck of who pays. It is hideously expensive and we only get 2 weeks supply in one prescription (albeit repeat' but under review). I also photocopy all hospital letters referring to treatment (eg neocate needed) as the GPs don't always receive them (or they get lost in the mountain of filing I see at the front desk...). Good luck. It will get easier.

[MaryPoppinsPenguins]

TheWatchersCouncil - yes. They even contacted a local one to ask them to remove a listing of it. I argued with them over wanting a repeat prescription for my DD and they said this is why they blanket don't do it... Because as the baby takes less formula, the patient keeps getting the same prescription and sells the excess as a best case scenario.

[Gobbolino6]

I work for a GP and this isn't normal. It's normal to only give a few boxes but it should be on repeat. Contact your consultant's secretary and ask them to write to your GP.

[Oldraver]

Can you buy it without prescrition ? If so I would buy one so you are ahead with the prescription.

I had a pharmacist get stroppy over my DS's Omeprazole as she said it wa expensive, so fucking what.. You dont need twattishness like this when dealing with sick DC's

[HumptyDumptyHadaHardTime]

Really?!?!??? Is that really what the GP thinks? The GP thinks so little of parents, and patients in general?

Because whether you like like it or not, it does actually happen.

[HumptyDumptyHadaHardTime]

*too many likes....

[tattyteddy]

I feel for you OP, my Dc2 has cmpa and we get nutrimigen puraminio on repeat prescription. Luckily I just call and get a repeat prescription and I've spoken to my locl boots pharmacy and they agreed to keep a small stock. Could you talk to the pharmacy and see whether they will stock some for you?

[Tamponlady]

You don't have to see the doctor for repeat perscribitions you can see the practice nurse much easier to get and appointment

[kali110]

ZebraOwl yes me too!my bag actually rattles! I was told by a gp at the doctors i couldnt have my usual brand of drugs as it was too costly, even though it was the brand id had for nearly 10 years! The new ones i reacted too. After 3 or 4 months
Saw my usual gp who straight away prescribed me the expensive ones. Said she didn't care about the cost my health was much more important!