Tuesday, 24 January 2017

Should parents of dairy free babies be forced to pay for their prescription formula??

This is the debate that has been raging on our Face Book page, since I posted a link to this article the other day. It's clearly an emotive subject. 

For those of you who haven't read the article, it appears that Croydon Comissioning Clinical Group - who make decisions regarding what services are/not provided by the NHS in the Croydon area -  have made the decision to stop providing baby milk (along with other previously prescribed products like gluten free foods). See the CCG press release here). This is a power point slide used by the CCG at their public consultation meetings.

A Power Point slide used at CCG's public consultation meetings.

Please note: It states that this includes milk for children who have an allergy to cow's milk, unless there are 'certain medical conditions'. It's difficult to ascertain what they mean by that.

In case you think I am the only one who finds this wording confusing, read a response to very similar proposals put to Cambridgeshire and Peterborough's CCG (but which I actually think read slightly more clearly than Croydon's), which was made by the BSNA, just last year:

In fact, Looking at the results of this previous consultation, it was only once all the results were in, and the ruling had been made, that Cambridgeshire and Peterborough's CCG (possibly as result of the responses, they recieved) clearly defined what they thought should be covered. See here:

Looking at Croydon's CCG press release, including detail of this kind in the proposal might have been more helpful, especially as all this information is open access online. Funnily enough, however, Croydon do go to the trouble, in the previous section, to compare prices of gluten free bread, available on prescription and in the supermarket. So why not break down what they mean regarding infant formula?

Whilst I take comfort from knowing that in Cambridgshire and Peterborough the ultimate decision looked sensible enough, each area is conducting it's consultation independently, so outcomes may vary, according to the responses returned by the local population.

A summary of responses to the proposals.

Further responses.

Looking at Croydon's CCG press release. It is also interesting to note that their proposals had been up for discussion, but that period has now closed. As this period ran over the busy Christmas period, many people who might have responded, may have missed it. 

Also, although to most families £278,000 that they are planning to save is a lot of money - until you look at the size of the budgets they're managing across the board.

The worry for many mums is, that where one NHS trust leads, others may follow and this may soon become widespread across the country - another 'postcode lottery'.

It was £25 for a tin of Nutramigen AA, a number of years back, when Kiddo was a newborn. I can well remember the shock I felt when the Doctor asked me how many tins I would require, as... didn't I know how expensive it was?? 

Well, we did, as it happened, because we had to pay for the first two tins - which we obtained via private prescription. 

For those of us who, for whatever reason, have had to resort to using dairy free formula, and know exactly how expensive it can be, paying for prescription baby milk seems a shocking suggestion, but clearly there are those who disagree! 

The arguments for/against

As much as I, personally, am against charging for prescription formula, I can quite understand some of the opposing views, and think it is only fair that all sides be heard. Outlined below are some of the major arguments:

The argument for paying for prescribed milk
The argument against paying for prescribed milk
You could eliminate allergens from your diet and continue to breastfeed.                                                                                                                                                                                    


     1.      Not everyone physically can breastfeed - for a variety of reasons, which I won’t address here.

      2.      Some mothers are advised to give up breastfeeding their allergic child, because the severity of the reaction is too great to allow them to continue whilst the allergens are still working their way out of the mother’s body – we’re talking hospitalisation here!

      3.      When children are dealing with multiple allergies, this can be incredibly hard for a mother to achieve, especially when they can’t identify what those allergens are.

      4.      Maternal medication/serious illness/death – rare but still requires consideration.

     5. Mothers who have to go back to work and therefore have to give up breastfeeding.

     6. Prescription formula is not just required to replace breastfeeding, but is often required to replace cow's milk when preparing food, during weaning - particularly for children with multiple allergies, for whom various so-called 'plant-based milks' are unsuitable.
Everyone else pays for their formula, why should the parents of allergic children be any different?
     1.      Prescribed formua is much more expensive than normal formula - £25 (or more) a tin, when you can buy a tin of normal formula for around £10. In addition, the tins of prescribed formula are smaller, so more are required. For families on, low incomes, it would be unachievable - it works out at hundreds of pounds a month! Even those of us who are supposedly better off might struggle to cope. 

      2.      And also, what about milk allergic children in families where they are at risk of neglect (again rare, but it ought to be considered). In such cases paying for expensive formula might come last on the list of priorities, especially where addiction is present.

     3. Parents of milk allergic children might then be tempted to source milk via the Internet from unknown, potentially unscrupulous persons, which could potentially put their health at risk. Pharmacies will not accept unused tins of prescription milk, even if unopened, for this very reason.
The NHS is struggling as it is and cuts need to be made.
This is true, however, it could be argued that we can all think of things that we consider ‘unnecessary’ that are currently available on the NHS, e.g. medicines which are actually cheaper to buy over the counter than to obtain via prescription, like paracetamol – children’s formula seems to be the wrong place to start making those cuts.
Go out and get a job/better job to pay for it.
We are potentially talking about a huge amount of money, so this is easier said than done (again for various reasons).
Use a different formula, which is cheaper and can be bought off the shelf at a supermarket e.g. soya or goat’s milk.
        1. A large percentage of children who are allergic to milk are also allergic to soya. This is because the proteins are very similar.

        2. A study has shown that 92 % of people allergic to cow’s milk are also allergic to goat’s milk - which should therefore be avoided.

A third way??

A third way - popular with many - is that people should pay the 'normal' price for formula and the NHS top up the rest. I do think that even if this suggestion has merits, prescription milk should not be stopped, until alternative routes have been considered. Once it's gone, its gone.

Moreover, it is also argued that having 'free' formula on prescription is only fair, when parents of milk allergic children have to pay so much extra for additional 'free from' products such as  dairy free margarine, cheese, etc. And, what's more, if those children have multiple allergies (many do), and have to pay extra for gluten free, egg free, nut free products as well... well the costs of having an allergic child just go up and up and up!! 

What do you think?

Not sure what to think? Please visit our Face Book page and read some of the stories that our mums  have posted. Please continue to add your comments, either to this post, or to our Face book page. However, I would ask that people remain respectful to other posters.

What can you do?

If this is an issue which chimes strongly with you, there are a few things you can do:

1. As this tweet says you need to contact CCG today at getinvolved@croydonccg.nhs.uk by email TODAY (not much time to get this done). 

Croydon Clinical Commission Group's consultation process has now closed, but...

2. Keep an eye on YOUR local CCG - Clinical Commisionsing Group (see here, to find yours), as they may well be considering the same. Richmond already appear to be on the same path. See here for further details. You have until February 3rd 2017, to respond to Richmond.

3. Write to your M.P and/or Jeremy Hunt - the Secretary of State for Health, who is currently responsible for the NHS.

4. Create awareness and support, by sharing this information as widely as you can.

5. Sign the petition, here. And then share it!

6. Follow the Campaign for Milk Prescription Access on Twitter and Face Book for updates. They also have a website here.

This really, really matters, to many mums and their young babies. 

Read Emma's story below - it's in the raw because I literally haven't had time to edit it yet, but actually, it's probably better, more real, that way.

Please do all you can!

Emma's story:


Sorry if it's a bit rambling... Feel free to edit as required! 

OK, this is baby number 2 with milk allergy. My son did not have his milk allergy recognised until he reacted badly to egg at 8months and paramedics had to come. We got a hospital appointment when he was 10 months and after talking about how he had been as a baby (V sicky, blood and mucus in poo, v unsettled, crying for hours on end, raw Excema,  wheezing) they said "not saying you were fobbed off by gp/hv/midwife etc.. But you were!  He is also soya free now. 

Understandably I was worried my new baby would have allergy but everyone said she was fine (again) and it was probably just colic (again) only at 10wks after blood in poo, constipation, diahorria, V unhappy baby and mummy did I get 2nd doc opionion who referred us to hospital and they confirmed milk allergy and put her on nutramigen. As she had pretty much stopped feeding as she associated milk with pain she did loose weight and it took a long time to get her feeding a bit better and up to second centile. At 6 months we were told to switch to nutramigen 2,and whether it was coincidence or she just started feeding more, I realised we were starting our 4th tin by only day 8. I realised I only had 4 more tins and as it takes doctor up to 48hrs to issue prescription and pharmacy have to order it I got on the case to ask doctor for more milk. When I rang next day to see if it was ready reception told me Dr had left note to say she was only allowed 8 tins a month and I would have to get appointment to discuss.  The next day all the appointments were gone so went the say after. My husband and I calculated how many tins a month my baby would need if she drank 35oz a day, (which is the amount the consultant said she should b drinking at 4 months) with no wastage (u can only keep it for hr once she starts it) The doctor listened to me, but said I should be weaning her, he was going by government guidelines, did I realise it was £11per tin,  and I was spending public money. He made me feel awful. I stayed calm and explained I am only trying. . to feed my baby and I actually started trying to wean and her at 5 months cos I thought maybe she would be better eater than drinker, but so far she was not interested. He reluctantly issued me a "one off prescription" for 8 tins but would not issue any more without letter from consultant.

I rang the consultant that day but he wasn't available and they said he would call back. I was then admitted to hospital due to my asthma and couldn't handle chasing it as think the stress poss contributed to me being poorly. I have actually had a phone call from consultant today and he said it was not a problem. He worked out how many tins she would need the same way I did. He did say to keep trying the weaning as he said it's common for babies with allergies to develop food aversions but said she could have 13 tins in a month and he would write to doctor.  So finally it's sorted and panic over.  I just found it so hard last wk when I felt just like when I knew she was allergic but couldn't get anyone to listen to me. 

I think we have enough to deal with and enough worries with our allergy babies without extra stress like this.  I would love to have a baby that is not allergic, but that's not the case. 
I hope other people manage to get the help they need. 

Kind regards, 

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