The Devils in the detail - a response from Croydon CCG...

The Statement...

Following the recent publicity regarding Croydon Clinical Commissioning Group's Consultation (which was featured in a previous post) the CCCG were approached and asked for more clarity. They responded with the following statement, by Dr Tony Brzezicki, Clinical Chair of NHS Croydon Trust:

Please note: The inclusion of a specific term - 'cow's milk allergy'. The specific line that interests me is...

'in particular, the high cost for products for parents and carers of babies with a cow's milk allergy who may need Neocate or Nutramigen.'

This is important as various of their documents relating to the proposed prescription changes seemed to use 'lactose free' and or cmpa, without really being clear what these terms mean and until now have not identified any formulas in particular. Let's unpick this line a bit:

Lactose Free...

If you are Lactose Intolerant that means you can't tolerate the sugars in milk. 

Lactose free formulas are readily available in supermarkets and are similarly priced to normal milk formulas. That seems reasonable enough. I think few people would quibble with the proposal put out by CCCG that people probably should pay for these themselves, without getting them on prescription.


Cow's Milk Allergy...

'CMPA,' or 'cow's milk protein allergy,' to give it its full name, is completely different. CMPA is an allergy to the proteins in milk, which is recognised by NICE, as a medical condition, and about which NICE have provided Healthcare Professionals a great deal of detailed information (see here). 

NICE make it clear that infants with this condition should strictly avoid all forms of milk protein, except in extensively hydrolysed formulas - such as Nutramigen, Similac Alimentum and Althea. However, some babies cannot tolerate even these hydrolysed formulas, so for these babies, NICE recommend an Amino Acid Formula or AAF, such as Neocate - as mentioned by name in the above statement. These are the ones about which many allergy mums are worried that the CCCG mean, when they say that parents should pay for their own. 

Taken from NICE recommendations.

  
Nutramigen and Neocate...

Currently 'Nutramigen' and 'Neocate, ' the two formulas mentioned in Para 5.1. of the CCCG's statement), are often prescribed for children with CMPA. As accepted in the statement above, they are very expensive. 

Puramino - formally known as Nutramigen AA - an amino acid formula - 400g

So we can see that the assertions by the original proposals that there were suitable formulas available in the supermarket for cmpa, at a similiar price to normal formulas, are erroneous. In fact there are no suitable formulas suitable for cow's milk allergy that are available in the supermarket at all, only those that are suitable for the lactose free. The soya formula that can be found in supermarkets is not recommended by NICE for the treatment cow's milk allergy.

Allergy mums are not freeloaders. Many mums have expressed a willingness to contribute towards the cost, but with at a price tag of £45 or so (for a tin that is much smaller than normal formulas), it is prohibitive for most, to bear the full financial load. 

Nutramigen Lipil - 400g

A way through for CMPA??

There is, however, a line in their Consultation report which refers to GPs being able to prescribe unspecified 'specialised formulas', once a recommendation has come through from a Specialist, see here:

Taken from Report to CCCG Governing Body Meeting in Public 17 January 2017

but only for those who meet certain 'medical conditions'. 

Interestingly enough, if you read the Report regarding the consultation, in full, there seem to be hints that GP's are suspected of having over-prescribed EHF's and AAF's in the past, which is why they are keen for specialists to identify the specific conditions that require the formula.

CMPA is not listed as one of those conditions, although 'faltering growth' which often accompanies untreated CMPA, is. However, 'faltering growth' does not always become immediately apparent in CMPA, which can manifest itself in various ways anyway. So here lies a problem.

And, what's more, anyone who has ever had to wait for an appointment with a specialist, will know just how hard that wait can be. If everyone has to wait for an appointment with a specialist, in order to get an initial prescription, I suspect those waiting times will only increase. If you have a poorly baby who desperately needs a prescribed formula, what are you supposed to do? 

I really worry that desperate parents will end up looking for alternatives in all the wrong places - funnily enough, something that has actually already been identified in the CCCG's report!


Another problem...


Moreover, originally, in their proposals, the CCCG appeared to suggest, that mums affected by their proposed cuts could use Healthy Start vouchers towards the cost of the milks they would need to purchase, but it now appears in their report (but not in the statement above) that this is not the case and there would be a shortfall, which they had not foreseen. This suggests that those in the local area who responded to the consultation did not have full access to the facts - perhaps because those putting together the proposals and the report for the CCCG did not fully understand the implications themselves.


Since this statement was released, it seems that Croydon CCG have gone remarkably quiet, despite the desperate attempts of many to obtain clarification of what all this means. It may be that Croydon CCG are only now beginning to get to grips with the implications themselves.


So what now??

As these proposals have yet to be framed into an 'implementation plan', it is hoped that there will be some room for re-working, and, as I understand it, from various Healthcare Professionals I have approached, various professional bodies intend to attempt to liaise with CCG with this in mind.

As there have been no further statements from the CCCG since the one shown above, I sincerely hope they are now currently working on a way to resolve the situation, before commenting further. 

We shall just have to wait and see.


If you live in the Croydon area...

... and wish to respond to the CCCG's Statement, as well as those points listed above, you may like to consider the following points:

1 1. That, if, until recently, you were unaware that the consultation was taking place (in fact around 346 people responded to their consultation – out of an area the size of Croydon -pop. around 398,000) in your opinion, this would suggest that either it escaped peoples' notice due to a lack of publicity, or that people failed to realise the impact of some of the decisions potentially being made. Let's make that clear - this consultation elicited responses from less than 0.1% of the area (less than 1 in 1,000), therefore hardly representative of the local population!

    2. The original consultation statements were unclear - there was some confusion as to the terms used, which conditions were exempt and which milks were being considered for withdrawal. Also, there was a distinct lack of supporting evidence to back their claims about the easy availability of alternative milks in supermarkets (although the report did go to the trouble of providing data re. other proposed cuts e.g. gluten free food on prescription and vitamin D prescription). 
     Rather the consultation engagement document and public meeting slides confidently asserted that alternative cows milk and lactose free infant formulas were widely available at similar cost. However, according to the CCCG's own statement, it is now evident that higher cost specialised formula with no readily available alternative are within scope of the proposals, and were not presented as such. This is particularly evident if you read their 'easy-reading' copy of the proposal documents (see here P.6). This may well have materially affected the consultation outcome for this question as it was posed as, to the uninitiated, it would look perfectly reasonable, to agree to the proposals. The 49% agreement level could have been significantly lower given this. 

   3.  Although allowance has been made within CCCG's consultation report (see here, P. 99 of 332), for GPs' to prescribe these formulas, once they have been recommended by a Specialist, in many instances, people have to wait a long time to get such an appointment. This could lead to lots of babies being put 'on hold' before they can get hold of the treatment they need – namely an appropriate specialised formula - which could make them very poorly. In desperation, some people may well attempt to seek alternatives from unsafe sources. Therefore, the impact on people’s health and well-being as a result of their proposals being implemented could well out-weigh the proposed savings.

If you do send an email, please stick to the facts, and tell them it’s a formal complaint.

Then:

• Copy in your local MP and his main political rival in your local area.

• If Croydon CCG refuse your complaint, you can contact the Parliamentary & Health Services Ombudsman (see here).

• Sign the petition circulating (see here).

If you do not live in the Croydon area:

• Those outside the Croydon area need to be aware of how this consultation process is spreading - other CCG's have already been through this process and are implementing changes. Each one has reached slightly different outcomes, so please make sure you find out and make your voice heard if/when it reaches your area. It may come under a general heading to do with 'Changes to Prescriptions'. 

• Find your CCG here. You can email them, to find out if this kind of consultation has, or is likely to be taking place locally.

• Richmond CCG (London area) are undergoing the same consultation as Croydon, right now. See here for further details. You have until February 3rd 2017, to respond to Richmond CCG.
• 
  

Update:

A campaign group has been set up to help families affected by potential changes. Called The Campaign for Milk Prescription Access, they hope to help counter the proposed changes and help all who are being expected to pay for their own milk. The campaign group are active on Twitter and Face Book and also have a website, see here.

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:

Hiya, 

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, 
Emma 

FAQ's: Where can I find a dairy free (free from) birthday cake?

Okay, so hands up - when it comes to birthdays, not all of us are born a Mary Berry, so who loves the idea of a ready made birthday cake??

Add your candles... and hey presto - you're all good to go!

Well, maybe not everyone, but I find I do a bit of both - I need one for the party and one for home and oh yes, another for school! No wonder I get very little blogging done when birthday season comes 'round! 

Sometimes I go all out like this:

This cake *may* just have caused me a few nightmares!

But sometimes, my fave Marry Berry Swiss Roll recipe (see here) just has to suffice - very quick, very easy and can be dressed a number of different ways! 

My absolute fave cake recipe!

Birthdays being the normal manic thing that they are, for at least one of these I love to cheat - to take the pressure off. Fortunately, as my kiddo is only dairy free it's a bit easier than I thought to find a dairy free cake... and from the supermarket too!

Asda, Tesco, Morrsion's and Sainsbury's all sell a fairly big range of celebration cakes and the good news is that quite a number of them are dairy free. Even Waitrose is now getting in on the act! 

Well, I say 'dairy free' - they are by no means marketed as 'Free From', but no milk or dairy products are listed in the ingredients of those that we've tried, and no 'may contains' either. And, maybe we've been lucky, but Kiddo has been quite sensitive to traces of milk and no unpleasant reactions have followed.

We've been 'lucky' so far - in that our Kiddo has been able to get the cake of her choice for each of her birthdays! She has already had this Lightening Mc Queen (Disney Cars) which we bought from Asda:

This is the bigger one!

Available for £10.00. For ingredients see here.

This Disney Frozen cake (bought from Tesco, but also at Sainsbury's):

Not quite as big when it's out of the box!

Which costs £10. Ingredients list here.

And also this Despicable Me Minion cake:

Not that big when out of the box either!

Serves 20 - just! But cost just £10.00. Ingredients here.

However, I've not been able to eat a single one of these cakes, as none of them are gluten free. Unless it's soya lecithin, I'm also soya free - which causes The Hub a fair bit of trouble when it comes to my birthday! 

This year, as so much was going on, there was NO cake for my birthday - cue sad face (that said we were about to go on holiday and The Hub was stressed to the eyeballs with stuff going on at work)! 

And THIS despite the fact that it's now become relatively easy to find a Free From cake - in fact all the major players now sell something gluten free (apart from Waitrose, of course) although Tesco's... well they now sell a nice looking little selection in their Free From department, but none of these are dairy free - cue another sad face! 

As of yet, despite the big Free From battle that is going on between the supermarkets, none of the cakes in any of the supermarkets are egg free. I am somewhat bewildered why it has not yet occurred to them that this section of the market remains untapped - especially as it would also appeal to Vegans. So if you are egg free, I'm afraid you will either need to contact a free from or Vegan baker like Hannah Banana (her cakes DO look amazing), or make your own, in which case, check out Lucy's Friendly Foods - she has some amazing dairy, egg and soya free recipes, including meringues!! 

However, on the plus side, Sainsbury's selection is definitely nut free too!

So lets have a little look at some of the options we've tried!

Asda

This cute little Madeira cake, priced £8.00, is just that - 'little' (678g). However it was enough just for us. Kiddo and I enjoyed it. The Hub not so much. It's free from all of the top allergens as far as I can see from the ingredients list, except for egg. However it is only described as 'Gluten Free' and 'Dairy free'. You can also get it in chocolate. However, the chocolate version (ingredients here) is made with soya beans, so is a 'no-go' for me.

Quite dinky!

Asda also make some lovely looking party cup cakes (£3.50 for 9), but sadly these are not dairy free (see here).

Morrisons

Morrisons have a nice looking Madeira Cake, which costs £8.00. It is free from the top fourteen allergens except egg, although it may also contain soya.

They also have a Vanilla tray bake, which is free of all the top fourteen allergens, except egg, although it may contain soya. It costs £3.60 and says it can serve 9 people.

There is also a chocolate traybake, which is made with egg and soya protein but is otherwise fourteen allergen free. As before, costing £3.60, it says it can serve 9 people.

But, by far and away the winners in the ready made birthday cake stakes, are, for me at the moment are...

(cue drum roll)


Sainsbury's!!

Purely because although not all are suitable for us, they now have a range of FOUR cakes that are ALL dairy, gluten, and nut free! 

We only have tried out the Madeira one (which was as pictured at the top of this post, but the design has now changed), because it is also soya free. It's priced £8.00 for 663g of cakiness, and would appeal to the more girly types among us - Kiddo loved it for sure - both the look and the flavour! 

The only one of the top allergens listed is again... you've guessed it, I'm sure... egg! 

This one, priced at £9.00, is perhaps more suitable for little ones (755g). It is also a madeira cake and really quite attractively decorated.

There is quite a nice size more adult-looking chocolate cake (743g), but it is made with soya protein, as well as the dreaded-for-some egg. It is priced at £8.00.

There is also a tray bake (726g) priced £7.00, which is a nice idea, for sharing -maybe with a class or toddler group, but which sadly contains the dreaded soya again (boo hiss). So I'm afraid those too are off my list!!

Sainsbury's, like Asda, now have some Free From cupcakes (6 for £3.50). They are plain and ready to decorate, but are not dairy free (sigh).



Tesco

Most of Tesco's ready made Free From cakes are only wheat/gluten free, but they recently produced this vanilla tray bake priced £4.00, it says it serves eight people. There is also this 'Carl the Caterpillar' cake priced £6.00.

One to appeal to the children!

So there you have it! 

Hope you've not been left too hungry after looking at all those cake pics and that this post has given you the information you need. 

Let us ALL eat cake!!!

Related posts: 

Dairy free frozen birthday party

The dairy free baby's party survival plan

Please note: 

This post is not an advert. I have not been paid to write this post. I am not sponsored in any way, even by advertising. I do not receive products free to review, although I have often been offered them. This is to try and maintain an unbiased approach. All views expressed are my own (unless I've asked for The Hub's or Kiddo's).

All I'm saying is... NEVER again!!