Friday, 10 February 2017

Government respond to tongue-tie petiton.

So you may have read a previous post concerning tongue-tie and how it affected 'Baby' and me in the early stages. At the bottom of the post I added a link to a petition. The petition reached the 10,000 signature stage, and has consequently been responded to by the Government.

See how the Government responded here:
Government responded:
It is for the NHS locally to ensure appropriate services are available to diagnose and treat tongue-tie. If there are problems with feeding, professionals should discuss options with parents.
It is important that babies with tongue-tie receive appropriate treatment and that appropriate support is given to their parents.
It is for the NHS locally to ensure appropriate services are available for the diagnosis and treatment of tongue-tie. Some babies with tongue-tie can still feed properly and do not need any treatment. If the condition is causing problems with feeding, health professionals should discuss the options with parents and agree the most appropriate form of treatment. For some babies, extra help and support with breastfeeding is all that is needed. If this does not help, the tongue-tie needs to be divided by a registered practitioner.
The focus of the Government’s infant feeding policy is to improve health outcomes for women and their babies; our policy is in line with the World Health Organisation’s recommendations to encourage exclusive breastfeeding for the first six months of life. Access to supportive services in the crucial early weeks can help women establish and maintain breast feeding successfully. Midwives and Health Visitors have an important role to play in providing information, support and advice to mothers and parents on infant feeding.
To assist the NHS, the National Institute for Health and Care Excellence (NICE) considered the division of tongue-tie in depth in July 2004. Current NICE guidelines recommend that, when considering division of tongue-tie, healthcare professionals should be sure that the parents or carers understand what is involved and consent to the treatment, and the results of the procedure are monitored. In line with NICE guidelines, NHS England expects healthcare professionals to discuss the benefits and risks with the parents or carers of any child.
The Department of Health does not set the content and standard of training for healthcare professionals. Health Education England (HEE) has responsibility for promoting high quality education and training that is responsive to the changing needs of patients and local communities and will work with stakeholders to influence training curricula as appropriate.
The content and standard of healthcare training is the responsibility of the independent regulatory bodies, in this instance the Nursing and Midwifery Council (NMC). Through their role as the custodians of quality standards in education and practice, these organisations are committed to ensuring high quality patient care delivered by high quality healthcare professionals. Healthcare professionals will be equipped with the knowledge, skills and behaviours required to deal with the problems and conditions they will encounter in practice. However, HEE will work with the NMC to influence training curricular as appropriate.
The UK National Screening Committee (UK NSC) advises Ministers and the NHS in all four countries about all aspects of screening policy and supports implementation. Using research evidence, pilot programmes and economic evaluation, it assesses the evidence for programmes against a set of internationally recognised criteria.

The UK NSC has not reviewed the evidence for screening newborns for tongue-tie. The UK NSC’s evidence review process outlines how to submit a proposal at https://www.gov.uk/government/publications/uk-nsc-evidence-review-process/appendix-d-how-to-submit-a-proposal-to-the-uk-nsc
Information on tongue-tie (ankyloglossia) is available on the NHS Choices website at http://www.nhs.uk/Conditions/tongue-tie
Department of Health


Well it's not really the news I was hoping to hear. Sadly it appears nothing is going to be improved at this stage. The Government has passed the buck to HEE, as well as local Healthcare Professionals and the training they receive. It's ironic that just the other day I saw an article about proposals to cut Health Visitor numbers in Humberside (see here).

However, I was interested to note (in the second-to-last paragraph) that it's possible to submit a proposal to the UK NSC. The fight is not yet over!



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Thursday, 9 February 2017

Lamb Casserole - dairy free, soya free, gluten free, egg free

It's that time of year - cold, chilly, grey, damp and we all suddenly crave something warming, don't we? This dish is a perfect winter warmer. The Hub first started making it a few years ago and then I picked up the ropes and it's now become a firm family favourite.


Perfect dish for this time of year!

Me being me, of course, I like things simple, so I've even found a few shortcuts to make it even easier - like buying lardons, and ready diced lamb instead of chopping up the bacon and lamb myself - lazy I know, but when you want to save time...  ;)

What you will need:

large cast iron casserole dish or a casserole dish and a large pan to brown the meat in
wooden spatula
small bowl
half litre jug
chopping board
large knife
peeler

Ingredients:

I pack diced lamb (250g)
I pack bacon lardons (100g)
1 pack charlotte potatoes (500g)
2-3  medium/large carrots
2 medium leeks
1 Knorr lamb stock cube
2 tablespoons plain flour (mine is gluten free)
3 Tablespoons olive oil


Method:

1. Scrub the potatoes to make sure they're clean. Some of the bigger ones may benefit from chopping up a bit.

2. Remove outer leaves of leek, chop and rinse in fresh water, then drain.

3. Peel and chop carrots.

4. Empty the diced lamb into a small bowl and coat in the flour. 

5. Put your olive oil in a pan (or if you have a cast iron casserole, in the casserole dish). Turn up heat and then add the coated lamb to brown. 
Covering the meat in flour and browning off is a bit of a faff, but is worth it!

6. Add lardons to crisp slightly. Meanwhile heat oven to 180 degrees C.

7. Turn off the heat under saucepan or casserole.

8. Make your stock, in the jug - you will need about 400ml.


We use Knorr, but you don't have to.

8. Place all ingredients in the casserole dish. Pour over the stock over all the ingredients. And place your casserole in the oven. Don't forget to add a lid!


So easy, all in one!

9. If you don't like your leeks to be too well cooked, you can put your casserole in the oven for about 1 and a half hours, then add in the leeks  (stir them in)and cook for another half an hour.

I like to lift the lid for the last hour-ish - I like my potatoes to brown a bit.


Ready to serve!

10. Serve and enjoy!


We never have much left over!! 


Pretty much all gone!

Slow Cooker Version

Having  recently bought a slow cooker, I've now started making it in there - nothing better than getting organised in advance and coming home to a ready made meal of your own devising! Having tried this a couple of times, I think I prefer the quicker method, but you could sweeten this one up by ditching the leek and adding some onion instead. Don't forget to brown them first, if you do!

1. Once your vegetables are prepped (as above). Brown off the meat and make your stock, only make up 300 mls, rather than 400 mls, with your stock cube.

2. Place potatoes and carrots at the bottom of the pot, then layer the meat over top. You can add the leeks at this stage, but they might suffer. Better to add them later on.

3. Pour over your stock.

4. Cook on low for eight hours, or on high for two and then low for four.

5. Add leeks 40 minutes from the end.


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).


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Wednesday, 8 February 2017

Emma's Story

I originally shared this story a week or so ago, unadulterated and 'in the raw', at the bottom of another post, about Croydon CCG's decision to charge for specialised infant formulas, which you can find here. I am re-sharing this story (only slightly edited) because the fight is by no means over and in the hope that people who read it will realise:

1. Food allergies are real.
2. Nobody wants their baby to have food allergies.
3. Correct diagnosis of food allergy can be hard to come by.
4. Undiagnosed babies with food allergies can become very poorly and can develop long-standing feeding problems, which can affect their growth and development.
5. With budgets to maintain, Doctors can be reluctant to prescribe necessary formulas.
6. Parents of babies with food allergies often have to fight for the correct treatment and this can be extremely stressful.
7. Specialised formulas are necessary for babies with allergies. There is safe no alternative that can be obtained at the supermarket for the same cost as normal formulas, as Croydon CCG and Richmond both maintained in their proposals. If only it were that simple!

Anyway, this is...


Emma's story:

Emma has two children a boy and a girl. Her eldest did not have his milk allergy picked up for the best part of a year. Despite being very sickly; having blood and mucus in his stools; and being very unsettled, Emma, seeking help for her son, got nowhere. He also cried for hours on end, had raw eczema and wheezed. Then, at the age of eight months, Emma's son had some
 egg, to which he reacted very badly and they had to call the paramedics. At the follow-up hospital appointment (which didn't take place until he was 10 months old), Emma described how he had been as a baby, and he was finally diagnosed with a milk allergy. She was told, "We're not saying you were fobbed off by the GP/Health Visitor/Midwife etc.. But you were!'  He is now also soya free. 

Quite understandably, when Emma was pregnant with baby number two, she was worried her new baby would also have food allergies, but again, everyone said she was fine. Again she was told that the symptoms that began to appear were probably just colic. Emma thought different, however, but i
t was only when her (by now, very unhappy) daughter was 10 weeks old; suffering with blood in her stools, constipation and diarrhea, did Emma manage to get a second opinion from a Doctor. 

As a result of this second opinion, Emma and her daughter were referred to hospital, where Emma's suspicion's of a milk allergy was confirmed and her daughter was prescribed Nutramigen. By this stage, Emma's daughter had pretty much stopped feeding, as she now associated milk with pain. She had lost a lot of weight and it took a long time to get her feeding better and her growth up to the second centile. 

Once her daughter reached 6 months Emma was advised to switch formula to Nutramigen 2, and, whether it was coincidence or not, her daughter started feeding much more. To her shock, by the eighth day, Emma realised that they were starting their fourth tin and she only had four more. Knowing that it took her Doctor up to 48 hours to issue a prescription and that the pharmacy would have to order it in, which could mean a few days wait, Emma got straight on the case - and asked her Doctor for more milk. 


More than just baby milk, this is vital medicine!

When Emma rang the surgery the next day to see if her daughter's prescription was ready, the staff at reception told her that the Doctor had left a note to say she was only allowed eight tins a month, and she would have to get an appointment to discuss it further.  The next day all the appointments were gone, so Emma arranged an appointment the day after. 

In the meantime, Emma's and her husband and calculated how many tins a month my baby would need if she drank 35 oz a day (which is the amount the consultant said she should be drinking at 4 months). The amount she came up with wasn't allowing for any wastage (you can only keep formula for an hour or so, once it has been made, so any left-overs need to be disposed of and fresh milk made up). 

Once she was at the appointment, Emma's problems were not over. The Doctor listened to Emma, but said she should be weaning her daughter. He said he was only going by government guidelines, and did she realise it was cost £11 per tin? He also emphasised that she was spending public money, which made Emma feel awful. 

Emma tried to remain calm and explained she was only trying to feed her baby and that she actually started trying to wean her daughter at 5 months, because she thought maybe she would be a better eater than drinker, but that so far she was not interested. Reluctantly, the Doctor issued her a 'one-off prescription' for eight tins, but would not issue any more without a letter from the consultant.

The next day, Emma rang the consultant, but he wasn't available and she was told he would have to call her back. Then Emma had an asthma attack, and was so poorly that she was admitted to hospital. At this point, she felt no more strength to keep pursuing the consultant, as she felt the stress was contributing to her being so ill. 

Fortunately, the consultant soon called back, and said it was not a problem. He worked out how many tins Emma's baby would need the same way that she had. He did say to keep trying to wean her daughter, as it's quite common for babies with allergies to develop food aversions, but said that she could have thirteen tins in month and that he would write to the Doctor.  So finally it was all sorted and the panic was over.  

Emma told me:

'I just found it so hard last week, 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.'



And those of us with 'allergy babies,' who have struggled to get help, know just how she feels. 


If this story has affected you in anyway, please join the Campaign for Milk Prescription Access, which aims to try and prevent prescription changes in the UK, that could make it harder for mum's of babies with allergies to get access to the formula they need. The formula is both incredibly expensive and incredibly necessary. At the moment not all areas are expecting mums to pay for their formula, but in some areas this is already starting to happen. 



The Campaign website can be found here. They are also on Face Book and on Twitter at @cmpa_UK. 

And you can sign a petition (not started by us, but related to our campaign) by following this link.



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Sunday, 5 February 2017

The true cost of my breastfeeding journey... dairy free...

Something I read the other day really riled me. 

It was when I was reading through some of the documents by Croydon CCG - to do with my previous post.

Basically, the Governing Body had decided that in order to cut down on the cost of prescribing specialised baby milk formulas for children with CMPA, it would be a good idea to encourage them to breastfeed.

'Huh?!'

I thought.

'What's that?'

Two things occurred to me at the time:

1. Yup! Having had major struggles when I was breastfeeding and had to find my own way through, there's no doubt... breast feeders need more support - bring it on!

2. Double standards. Breastfeeding 'aint cheap! NOT if you're gonna do it properly!! 

Yes you heard me!! I know they said that it was free, at breastfeeding school, but I beg to differ!

Actually, there's three things that occurred to me.

3. Why can't allergy mums have the same opportunities as other mums who have no allergies to deal with? 

I mean, it IS the 21st century after all - most mums can decide whether to bottle or breast feed. It's up to them. Why single out allergy mums, just 'cos it's not expedient for the CCG??

However, back to the breastfeeding. It 'AINT cheap!! 

How so??

Well, quite apart from the fact that I've spent I dunno HOW much on breastfeeding related stuff: 
  • nipple shields 
  • nipple cream
  • bras 
  • pads to go in them 
  • breastfeeding tops 
  • aprons 
  • breast shells 
  • gel pads to help me express  
  • Jelonet to plaster over the cracks that appeared
  • breastfeeding tea, when my supply ran low
  • a machine to express, when the pain got too much (plus bottles and spares)... 
(yes, yes, yes, I may not have needed all of that stuff, but I wasn't to know that then, and I did use most of it - particularly through my struggles at the beginning) there's also: 
  • the breastfeeding assistant who helped me in hospital
  • the TEN midwives who came to visit me in the early stages, but who didn't really know how to help me (I had the feeling they may never have experienced breastfeeding themselves)
  • the extra breast feeding groups I attended 
  • the emergency visit I made to a clinic on a Saturday morning 
  • the La Leche League breastfeeding counsellor who referred me to 
  • the Maxillofacial surgeon, who cut my baby's tongue-tie, so I could feed more easily 
  • the GP who discovered my nipples were infected and prescribed me antibiotics... 

I mean all of these people cost money - in wages... and still I felt I was left floundering!!

When you have cracks appearing in your nipples, that become craters, that start to disintegrate your nipple until you have nearly half missing (yes I'm not exaggerating); when you look at yourself horrified and wonder whether you will lose the rest of your nipple and be disfigured for life (thankfully it did grow back, after the drugs kicked in); when you know your baby still needs feeding because she's milk allergic and at that point you have no formula, and the advice is to continue feeding... what then?? 

There's the emotional cost, when things aren't working and you don't know which way to turn; the lack of sleep (breastfed babies seem to wake up more); the housework not done because your baby wants to feed... AGAIN??

And then there's my wages.

Yup! 

NO wages!!

And, here's the thing - if you breastfeed your baby you have to be available to your baby 24/7.

(Yes, yes, yes, I know about expressing. I tried. I failed. I tried everything - massaging, heat pads, endless pumping with the best pump on the market. My boobs just wouldn't cooperate - I used to get out about an ounce or so after about 45 minutes of pumping. Once time I hit the heady heights of three ounces, but that was a one-off, never to be repeated.) 

So I didn't go back to work.

The WHO (not the band, the World Health Organisation) recommend breastfeeding for the first two years of a baby's life. 

Two years wages (I actually fed longer, but that's beside the point)!!

How many families can afford that?? 

Especially if, like my sister, the mum is the major wage earner in the family.

Yes, yes, yes, the first months of maternity pay aren't so bad... but then it begins to drop away... and you start to feel uneasy. And if you worry about your career, or your finances... well the pressure to return to work is strong.

Now, don't get me wrong - I'm a huge, HUGE, fan of breastfeeding and I don't regret the choice to breastfeed my baby at all... well, after we got over the obstacles... but I do think women should have the choice - allergies or no.

Oh! And... did I mention cutting out dairy and the cost of all the dairy free food?? And if, like me, you find yourself intolerant to dairy afterwards??

Breastfeeding cheap??

Don't make me laugh!!


Update:

And if you're affected by the changes being proposed by Croydon and Richmond or are struggling to get hold of prescription formula, you may be interested to know that a campaign group has been set up. Called The Campaign for Milk Prescription Access, they can be found on Twitter and Face Book and have set up a website, see here.




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Friday, 27 January 2017

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.






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:

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