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.

[kali110]

tampon does every surgery have a practise nurse? Ive only heard of that on here! If i ever need a prescription i have to see the doc, if im with the nurse and she thinks i need something ahe has to see the doc and get the prescriptions signed.

[Jibberjabberjooo]

My ds was on Neocate, there is no way your GP should he refusing to put it on repeat when you have a diagnosed allergy. I would complain to the practice manager.

Have you spoken to the pharmacy?

[Jibberjabberjooo]

Why should the OP buy it? It's over £30 a tin for a start.

[FeelingSmurfy]

Ask for some next time you are at the hospital, explain the situation and ask for some to keep in case of emergency (but swap them when you get from drs so you always keep the two tins (or however much) with the best dates). Tell them how worried you are about not being able to feed your LO because you can't get the formula in time

[SexDrugsAndSpringRolls]

Are you me 5 years ago...?

First I solved it my ringing my son's consultant's secretary to write further letters about prescribing guidelines, this much, at these intervals until this date. It did make a different. I also put a complaint in writing. Mine was a 2 week supply.

In the meantime my local boots branch were amazing, ordered it so it was in and even once gave tins before I had the paper back.


Then I changed doctors, you don't realise how much better some GPs are until you try. My new ones are amazing

[FeelingSmurfy]

OP shouldn't have to buy it, but if she could get it somewhere safely (I also wouldn't trust buying online) then £30 would be worth the peace of mine of knowing she has one in case of emergency. She wouldn't need to tell the Dr she had this safety tin, but it would be reassuring knowing it was there. I definitely wouldn't buy it all, but if it was me and it was possible then I would buy one to reassure myself

[SexDrugsAndSpringRolls]

Even a 'safety' tin makes sod all real difference, they are half the size of normal ones and it'd buy a few days as LO grows. Not much use when the prescription takes a week to get in sometimes.

[honkinghaddock]

None of ds's meds are on repeat as they seem reluctant to do this for children. You can fill in a request form at the desk but then you have to go back when it is done to take it to the pharmacy (which often doesn't have them in so you have to go back again to pick them up) because only repeats go across automatically. We have this song and dance every 3 weeks.

[writingonthewall]

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

Not true. You may be able to see a specifically trained practice nurse to renew certain repeats, such as those for asthma and diabetes, if the nurse has those qualifications. In general, prescriptions are authorised by doctors.

[writingonthewall]

None of ds's meds are on repeat as they seem reluctant to do this for children

I don't recognise this. We have, I would guess, over 2,000 children registered with us. If we didn't put any of their medications on repeat, we would do nothing but spend our time issuing them! Things that sometimes don't go on repeat are where there are very frequency dose changes as the weight increases, or drugs that are only prescribed by secondary care for safety reasons. I can think of two patients that I am aware of where this happens.

[PlaymobilPirate]

Your son has an allergy and you are perfectly entitled to a prescription for his milk. You do not need to buy anything online or anywhere else. Our NHS is stretched but not stretched enough to deny a baby what it needs.

Ask the doctor why he/ she is refusing. Calmly state your reasons for needing it on repeat and explain that you feel you are wasting appointments.

If you get no joy - speak to the practice manager.

When ds was a baby he was on small bottles of weird build up milk (can't remember the name) and the doctor would only prescribe 1 box (24 bottles - lasted a few days at most. I don't drive and had a cs - walking the 35 minutes to the surgery to collect 1 box with a poorly baby was ridiculous (dp finishes work after the pharmacy shut)

I had to speak to the Practice Manager who agree it was ridiculous.

The stuff is expensive and i completely understand why they may not want to hand stuff out left right and centre but we don't choose what gets prescribed for our children!

[honkinghaddock]

Ds has been on one med for 2 years and the other 3 for 9 months. Dose has always been the same. 2 of them are not standard children's meds although they are licensed for children.

[writingonthewall]

Honkinghaddock I would complain or change GP, unless there are specific safety reasons why it needa a GP check every time.

[honkinghaddock]

Thanks. They also allow adults to request online but won't allow it for children's prescriptions.
Hope you get something sorted out Op.

[writingonthewall]

They also allow adults to request online but won't allow it for children's prescriptions.They also allow adults to request online but won't allow it for children's prescriptions.

That may not be unreasonable. There are some very complex issues around allowing access to children's notes, this is a new area and the practice resources needed to sort it out are unfunded. Many practices are taking a blanket position of no online access below the age of 16 and unless the govt decides to fund patient online properly (ha!) , rather than just expect GPs to do it out of (already long eroded) goodwill, it's probably the safest position.

[StuntNun]

My DS4's paediatrician wouldn't give me a prescription at all, he advised me to buy soya milk for him. Unfortunately I tried that and he's allergic to soya too. DS4 is still breastfed so I only need one tin a month for the childminder so I've ended up having to buy the formula online.

[TwoLittleBlooms]

I have to say I find it thoroughly shocking the way your GP is behaving - the milk is vital for their well-being (my daughters allergy reaction isn't severe as in ana but it still causes distress). Could you maybe see another GP in the practice? Or maybe have a word with your baby's dietitian or consultant and explain how difficult the GP is being and how hard it is having to make an appointment every single time you need milk? (I am assuming both are approachable but we have been lucky with ours).

Could you ask your pharmacist to order some in advance to limit the wait once you have the prescription? My daughter is normally on Aptimil Pepti (this week Nutrimagen - but that is a rant in itself!) and Boots nearly always order more tins in when we collect her prescription from them (they don't carry it normally). They are also great in that they can order it in the morning and it will be there in the afternoon and have bailed us out when we had a problem with prescription and would have ended up with no milk - they gave us the milk and then when the script was ready they collected it - however we always use that pharmacy so they know us.

With regards to buying a tin - you can order it through a pharmacy and buy it without a prescription rather than online - we had to buy one early on - but they are expensive (we are actually on one of the cheaper milks as it agrees with her and that is still an ouch price) and you actually shouldn't have to.

Hope you manage to get everything sorted.

[CheesyWeez]

You can freeze baby formula (in powder form) to make it last past the sell by date. My midwife told me to do that when DS was mixed feeding (only 1 bottle per day) and we weren't using the formula up quickly enough
Just in case this is a factor for you OP, as you can't get big stocks in of this kind of formula

[Jibberjabberjooo]

I've always managed to get my children's prescriptions on repeat.

Even as a paediatric nurse myself I feel like I've battled to get my children seen and diagnosed and referred. Some of the things I've been told have been utterly incorrect, it's the most frustrating thing.

[CorBlimeyTrousers]

Stuntnun - we have to buy lactose free formula milk for our son even though it was recommended by the paediatrician. Luckily it's widely available and not VERY much more expensive than regular formula - £5.50 for a 400g tin whereas I think Aptamil First is £10 for 900g. I often order from ChemistDirect because I can get 3 tins when Boots will only sell me 2. I never thought I was taking some terrible risk doing that?!

The situation with the repeat prescription does sound crazy. Surely they must have ways of making sure you don't ask for too much. I do agree that some people might sell it on - that's why Boots will only sell 2 boxes at a time. China is a big market for western formula milks after the terrible problems they've had there.

[Jibberjabberjooo]

I think some GPs don't take reflux, cmpa seriously.

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?

[headsshouldersbarestbum]

Went all through this with my youngest. GP was only prescribing 4 cans at a time, which sounds like a lot however we were getting through a can every day and a half (medical reasons for doing so) and my pharmacy needed 48 hours to fill the script.

And then someone cocked up and wrote me a script for 40 cans instead of 4. It was the most expensive script the pharmacy had ever filled in one go.

[kiwiquest]

DD is on Neocate we have it on repeat prescription and get 4 cans at a time. You need to go back to the Consultant or get a new GP. It shouldn't be this difficult. When I went back to work, I suddenly needed a can with nursery, a can with my mum and stuff at home. I certainly wouldn't have time to the Drs every other week. Also prep the pharmacy that you need regular orders as they only usually hold limited stock. Time to get stroppy/complain to the practice manager or find someone more helpful!!

[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.

[TheCatsMeow]

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