To wonder why the GP is making it so hard for me to feed my baby?

[hereismydog]

DS is 3mo and has CMPA. He was EBF until he was 8 weeks old and then I had major surgery and post-op infection which caused my supply to drop and it never quite recovered. We moved to combi feeding as trying to continue EBF was physically and mentally exhausting for me as he was feeding up to 20 times a day. Both he and I are much happier now that he is BF on demand, with CMPA formula top ups.

The problem is that his GP will only prescribe ONE 400g tin of formula at a time, so I am submitting a request for the next one (online pharmacy) before his order is even delivered. There’s been a delay this week so his delivery is 5 days late and I’ve had to ask 111/his GP twice for an emergency prescription. I’ve asked on both occasions if they could maybe prescribe more than one tin and it is never actioned. I’ve gone from being incredibly anxious about my own milk supply to being anxious about his formula supply, and am now finding that I have to ration his formula and go back to an exhausting schedule of almost constant breastfeeding and pumping, which is pretty isolating as I can hardly leave the house!

Surely this cannot be usual practice for prescribing formula? If not, how can I get them to listen to me and issue more than one tin at a time? He is also supposed to have been referred to a dietitian, which has seemingly not been done as I haven’t heard anything.

I have found in the past that an old fashioned letter addressed to a named doctor and delivered by hand to reception is less likely to be ignored than a phone call, email or online request.

This brings me back many, many years to when the youngest was on neocate (and I can still remember the smell!). Thing is, the GP knew exactly how much was being consumed as youngest was actually tube fed. Tube fed babies are fed very differently to formula on demand babies. It's based on mls/kg x times per day. Youngest was doing a can roughly every 2 and a half days. I was getting a can at a time ffs. Oh and the pharmacy would have to order it in as well as it wasn't a stocked item.

Anyway, in the end I got my very understanding and tolerant pharmacist to do me an invoice for a month's supply. I then sent this to my GP surgery asking them if I was going to be buying my babies milk that month or paying my mortgage. I got 25 cans at a time on repeat.

I had the same thankfully I was able to mostly breastfeed and just gave 1 bottle a day to make it last.

Thank you all so much for your help! I do have a good HV so might be worth giving her a call to see if she can throw some weight behind my request.

I know people give them away because I got an emergency tin from someone on Facebook (she works in the same hospital as me so I knew I could trust her!), but one 400g tin at a time is bonkers. It lasts 3 days! Also if I was fully FF, what would I be expected to do if I dropped the tin in the middle of the night and had none left?!

I’ve got a phone review with his GP on Thursday so will ask her directly if she can prescribe as I won’t have to battle past the gatekeeper receptionist to pass the message on. We’re going away for 2 weeks soon so they’ll have to prescribe him enough to last our whole trip as I doubt there’ll be any CMPA formula available to buy where we’re going. Also having the same issue with his Gaviscon, they’re prescribing 5 days’ worth at a time and he’s just constantly being sick because we don’t have enough of that to give him as much as he needs either

As far as I'm aware, infant Gaviscon is basically just a thickener. If your little one is struggling a lot with reflux, I would ask your GP for omeprazole (the liquid one not silly dispersible tablets that are no good for a baby). But from the sounds of it they're unlikely to give you that. It costs the NHS a lot more than the tablets. We recently had a bit of a battle with our own GP surgery to get them to prescribe it again after they tried changing it from liquid to tablets. They refused but we persisted. That's sometimes just what you have to do even if it feels a bit uncomfortable putting your foot down. We've asked for appointments as our baby is unsettled and in pain. That seems to do the trick as our problem is actually usually the pharmacist (gatekeeper of all medicines it seems) who is based at the surgery rather than the actual GP.

We're on our 3rd baby with CMPA, prescription formula and omeprazole for reflux. The first 2 were on Pepti 1 which was fine. This one was on it then had to move to nutramigen recently. He also took gaviscon for a while but it seemed to give him a sore tummy and he was always uncomfortable so we asked for omeprazole instead. We also use a scoop of Carobel to thicken his milk. Oh and one of the GPs at our surgery initially prescribed 4 small tins of milk and when we ordered more they were confused and even phoned to say we had just had some less than 2 weeks ago and we had to point out that one 400g tin lasts about 3 days max 😂

It absolutely would. But the issue is that many abuse the system. There is no test for cmpa, it's based purely off parents report of symptoms, so people do claim it and then sell it. One look on eBay tells you just how common this is, from the number selling it privately. That's why it is do important to work it out precisely, to demonstrate why need a specific amount, rather than just saying 'I want 10 tins'.

It does make you thankful for the nhs, as a lady on here said, many wouldn't be able to afford if had to buy it.

Phone and ask to speak directly to the practice pharmacist, I have found that this is the best way to get prescriptions varied.

Just on the breastfeeding side - are you sure the frequency of feeds is due to your supply? Have you had baby checked for tongue tie? Just a thought, as it can cause lots of feeds and also reflux symptoms, so might be worth getting a tongue tie specialist to check, if you haven't already. Just in case that helps at all.

Fingers crossed your GP practice manager can help get you the formula you need too - CMPA is stressful enough without other people making things harder!

Well that's ridiculous. When my son was on prescription formula we got a box of 12 tins at a time! We did have a nightmare trying to get the doctor to prescribe and the person who made it happen was our amazing health visitor who went and had a go at the GP on our behalf- could you ask your HV for help?

This is ridiculous, you definitely need to speak to them again, perhaps you could say you’ve stopped breastfeeding as they may think you don’t ‘need’ the formula. If you said you purely rely on the formula and need X amount a day I don’t see how they can restrict it so much, I would say at least two weeks worth you should get! I would probably buy a tin or two as well just to have a backup.

i don’t have any advice. I just want to say i’m sorry. I struggled with breastfeeding both because it was mentally and physically draining and i didn’t produce enough for no explicable reason.

Little one was ebf for 3 days and literally never left my boob but still dropped too much weight so had to combi feed. i just gave up entirely after 8 weeks because I felt like when i wasn’t breast feeding i was either washing and sterilising bottles or pumping or washing and sterilising the pumping equipment. it was miserable.
If i was having a hard time getting formula on top of that, i would have absolutely lost my mind. I cant eimagine what that feels like, shortly after childbirth and surgery. Wishing you strength and a solution.

I think it's set by the commissioning group. We have the same situation with our daughter's thickener, they prescribe 4 small tins at a time, so I'm basically at the pharmacists all the time.

I had similar with nutramigen.

make an appt and go in (with your partner too for moral support if possible), show them the size of the tin and the number of bottles you get per tin, and how long a tin lasts you. Ask them to update the prescription to eg 8tins whilst you’re there so that every time you order a repeat that’s what you get.

if they refuse, ask why. Then contact the practice manager and PALS (for cct) and complain.

also, you can order tins (and pay) from Boots as backup.

I wasn't even aware you can get formula on prescription- consumables are usually on the black list.

Only specialist formula for medical needs.

Explain your baby's intake has increased and you need extra tins to cover.