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MNers need to be up in arms about proposed changes to prescription baby milk

(104 Posts)
babybarrister Sat 28-Jan-17 09:37:56

[http://www.anaphylaxis.org.uk/2017/01/25/nhs-croydon-clinical-commissioning-group-proposed-prescribing-changes-affecting-infant-milk/]

I know that this will not affect everyone by any means but for those DC who are allergic to milk and possibly for those who are lactose intolerant or for whom milk simply does not agree with them, it cannot be right that this the special milks - which are all foul in any event and no-one in their right mind would ever opt for - should not come on prescription.

They are four times the price in case anyone is wondering why parents should not just go out and buy them.

Helenluvsrob Sat 28-Jan-17 09:44:35

My understanding is that specialist baby mills will still be prescribable if recommended by a consultant .this is best practice anyway so I'm not sure it always happens at the moment.

glueandstick Sat 28-Jan-17 09:47:09

You can buy lactose free milk OTC and it's the same price.

The rest should be on prescription

babybarrister Sat 28-Jan-17 09:47:39

Vast majority of prescriptions though for babies are made by GPs as they will not necessarily have been referred - nop doubt this is precisely why they believe it will bring savings ....

BurnTheBlackSuit Sat 28-Jan-17 09:47:48

Please can you describe what they are proposing? Your link doesn't work.

Is it even possible to buy potato peelings milk not on prescription?

babybarrister Sat 28-Jan-17 09:50:19

The hypo allergenic formulas are much more expensive than the lactose free ones - £43 for a smallish tin

babybarrister Sat 28-Jan-17 09:51:12

www.anaphylaxis.org.uk/2017/01/25/nhs-croydon-clinical-commissioning-group-proposed-prescribing-changes-affecting-infant-milk/

Soubriquet Sat 28-Jan-17 09:53:23

working link here

I do hope nothing changes

My ds was on prescription milk. No way could we have afforded to buy it as it was a complete cows protein free milk which is about £15 a tin for 400g...half the size of the average baby formula and twice the price

Even if you pay the prescription charge you still aren't saving any money.

We would get through 2 tins a week which is £30 a week to feed a baby just because they are allergic.

Akire Sat 28-Jan-17 09:55:19

They had this on Channel4 news yesterday. A mum was saying it was going to cost her £140 week in formula as opposed to £10 for one large robot normal milk.

They seem to be saying that getting gluten free bread on prescription is the same. Which might have been 20y ago but nowadays it readily avaibile and will not cost you £140! It prob still cost you x10 about of normal bread per slice but would be doable for most people.

BurnTheBlackSuit Sat 28-Jan-17 10:00:12

I've remembered the name of the potato peelings milk- Nutramigen. I have never seen it for sale in a shop (although I don't look at baby milk anymore so I could be wrong). So how could this work?

I don't know if it's possible, but if it is I do think they should test babies to see if they have CMPI instead of guessing based on symptoms.

LagunaBubbles Sat 28-Jan-17 10:03:07

Surely they wouldn't allow babies not to fed the milk they need because it's too expensive for parents to buy??

79Fleur Sat 28-Jan-17 10:03:48

I would be worried poorer parents would try and find a cheaper alternative and ultimately children with already complex feeding issues would be at risk and their nutritional needs would not be met. TBH this smacks of postcode lottery and I don't feel this would be across the whole country...I have recently been prescribed a dairy free formula for my daughter with no issues we are under a consultant at an allergy clinic.

Chocolateorangegoblin Sat 28-Jan-17 10:04:39

My son is on Neocate (amino acid based formula for cow's milk protein intolerance)
It is £46 for a 900g tin which lasts three days. There is no way we could afford to pay that.
I don't think they are even suggesting people can buy it so I'm not sure what they think babies are going to drink if they can't get their prescription milk?!

Soubriquet Sat 28-Jan-17 10:05:14

I would have loved testing.

Least then they could probably diagnose earlier!

Took my ds 5 months to be diagnosed.

That's 5 hellish months where he screamed all day and night and never sleeping for more than an hour at a time.

And it was a scream of pain not a normal baby scream.

It was hell. I spent many a day in tears, exhausted and I really resented my ds at one point.

Then he suddenly stopped eating. Refused to take a bottle.

He ended up in hospital where the doctors tried him on nutramigen puramino milk just to see what happens and within 24 hours he was a completely different baby.

He smiled. He slept. He cried like a normal child instead of this ear piercing shriek.

The doctors saved my sanity and my sons health.

bulldogmum Sat 28-Jan-17 10:05:15

Just read the link and I am furious. Yes certain milk products are available but my daughter had CMPA and was on neocate which is £40 for a tin that lasts 2.5 days. She would not be covered under their proposal to only prescribe for preemies, etc. That would mean over £120 a week on formula.
Yes breastfeeding is best but my daughter was tongue tied which we begged the NHS for help with and were given an appointment 3 weeks later even though she wasn't latching or feeding properly. This was agony for me and meant I didn't have any milk supply for her. We tried otc formula which made her sick and after 9 weeks we finally got put on neocate. The change was incredible and she was finally happy and I wasn't an emotional wreck with a baby who screamed 18 hours a day.
So under these proposals I wouldn't get the prescription and we couldn't afford the formula so are they just suggesting we leave her to suffer?

CelticPromise Sat 28-Jan-17 10:05:24

Specialist milk prescriptions have increased massively over the last few years. I know they cost my health board a fortune. They should not be prescribed by GPs in a 10 minute appointment. Babies need a proper feeding assessment and a dietitian. That's what is being proposed where I am. Obviously they are vital for some babies but here every other baby is on hypoallergenic milk and /or reflux medication, and they don't all need it.

Trainspotting1984 Sat 28-Jan-17 10:06:30

I also don't really understand this. If would be prescribed by a consultant under a controlled trial -this already happens (my BF is having this at the moment) surely specialist treatment like this should only ever be used when appropriate? From what I can gather from my BF a GP is highly unlikely to be able to do the detailed assessment needed to prescribe this milk- is that why it's being tighened? Being prescribed all over the place? It is expensive after all (for the NHS as well as parents)

Soubriquet Sat 28-Jan-17 10:07:04

And I was wrong about the price!!

It isnt £15 for 400grams

It's £34.99

That's an average of £70 a week!!!!

That's expensive and no way could we have afforded that

Crumbs1 Sat 28-Jan-17 10:08:00

Over reaction. No reason for many to have prescriptions for formula milk when they have a totally free option and things like soya are about same price. Most 'intolerances' are not clinical conditions but prescriptions are given to appease. Of course coeliacs have serious issues but this allergy/ intolerance culture costs NHS a fortune unnecessarily. We've become ridiculous and as soon as a baby gets gripey for a few days we change diets around and start medicating. My delightful son in law to be won't eat nuts/lactose/citrus fruit because his mother has an allergy and so he might as well. He's an adult but the mothers neuroticism during his formative years have stayed with him.
Brighton have stopped prescribing paracetamol too - quite rightly.

CelticPromise Sat 28-Jan-17 10:08:03

I agree these milks should be available on prescription just not necessarily from GPs.

Soubriquet Sat 28-Jan-17 10:09:55

They should not be prescribed by GPs in a 10 minute appointment.

That's all very well but when you have my doctor who refused to see the problem, told me I was feeding my ds too much and that he was just an unhappy baby, how is anyone supposed to be referred for more help?

It took for my ds to stop eating for them to finally refer him to hospital and even then he was reluctant to do that. We had to get my health visitor involved

The doctor said and I quote "a baby can go 3 days without eating" hmm

MrsJayy Sat 28-Jan-17 10:10:08

A relative of mines baby was on specialist milk baby and a bowel condition and was allergic to something in breast milk anyway the formula over a decade ago was £30 a tin baby went through 2 or more a week . Stopping prescriotion milk is ridiculous.

SoupDragon Sat 28-Jan-17 10:15:41

I saw this on the news last night too. I wondered if a prescription "charge" equivalent to the cost of ordinary formula would work with only the extra cost above that being born by the NHS. I don't agree with it being withdrawn completely for infants who definitely need it.

The fact is that they have to save money somehow and ther fore someone is going to miss out. Who should that be?

farfallarocks Sat 28-Jan-17 10:16:04

The problem is there isn't really a test for cmpi it's diagnosed based on symptoms. My daughter has this very badly, at 5 weeks she was vomiting constantly, pooing blood and covered in eczema. She was reacting to the tiny amounts of cows milk protein in my breast milk. I went dairy free for 7 months and she recovered but then I had to go back to work! So she was given neocate. It's very expensive and we found it very hard to get it prescribed , it took 3 letters from our consultant for the gp to agree. Cmpi does seem to be much more
Prevalent and I wonder why that is.

farfallarocks Sat 28-Jan-17 10:16:51

The good news that most children grow out of it

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