Tuesday, 21 February 2017

Government response to the petition regarding baby milk

You may have been following the recent story over Croydon CCG's decision to drop prescriptions for specialised baby formula, including milk for babies with cow's milk protein allergy. If not, you can read about it here and here.

A petition was launched (see here) and the number of signatures reached 10,000 - the limit at which the Government is obliged to look at the petition and decide on an appropriate course of action. The Government response to the petition regarding prescribed baby milk formula has finally arrived. See below:

Government responded:
It is for Clinical Commissioning Groups (CCGs), through their local prescribing policies, to decide what to limit on prescription
Croydon Clinical Commissioning Group (CCG) has confirmed that its decision to approve recommendations to stop the prescribing of gluten-free products and baby milk were made in the context of the financial pressures the local NHS is facing and the need to make savings in the next financial year.
The CCG undertook public engagement on the proposals prior to making its decision, engaging face to face with over 300 individual local residents, patients and professionals at more than 30 sessions. A total of 346 written responses were received through the online and paper survey. The CCG advises that the response to the prescribing proposals was predominantly positive, with over 70% of respondents agreeing that the CCG should stop providing self-care medications.
Croydon CCG recognises the concerns of those people who currently receive these products on prescription and has advised it will work closely with local communities, Croydon pharmacists and GPs to support people to find affordable alternatives.
Department of Health
Click this link to view the response online:
The Petitions Committee will take a look at this petition and its response. They can press the government for action and gather evidence. If this petition reaches 100,000 signatures, the Committee will consider it for a debate.
The Committee is made up of 11 MPs, from political parties in government and in opposition. It is entirely independent of the Government. Find out more about the Committee: https://petition.parliament.uk/help#petitions-committee
The Petitions team
UK Government and Parliament
From the way the response has been worded, it does seem as though the committee of eleven MPs who have considered the merits of the petition, has actually looked into what has been happening, but unfortunately, the response is as I feared. Basically, they have reached the conclusion that it is up to Croydon CCG to do as it thinks best.

I am disappointed that in their response to the petition the MPs did not consider the limited response to Croydon's consultation (merely 346 - less than one in a thousand, of the local population), or that the wording of the consultation was inaccurate - in stating that specialized baby formulas were the same price as specialized formulas and could be found freely available in local supermarkets.

Also, I disagree with the response of the Government that around 70% were in favour of the prescription changes. Indeed 70% were in favour of changes to self-medication, but that was a different issue, in regards to changes to baby milk prescriptions, the figures are very different. If you read the consultation report, see below for a direct quote (see here for the full report), the breakdown shows a very different figure in regards to the specialized formula - which indicates that if the consultation had been worded accurately, it may well have resulted in a decidedly different outcome.

From page 123, of 332 of the report

Although the outcome, so far, is not what one would have wished, there are still things that can be done. The petition can still be signed and shared as widely as possible. If, in the next four months or so, the petition could reach the 100, 000 response point, then Government would be obliged to consider debating the issue in Parliament. If the petition reaches this stage, we would ask everyone to write to their own MP, as obviously every positive voice in Parliament would count.

Meanwhile, a Campaign group has been set up to try and counter the proposals. It is seeking to raise awareness of the issues and looking at ways in which the decision can yet be challenged. Various professional bodies, Allergy UK and The Anaphylaxis Campaign are also seeking to try and persuade Croydon CCG to reconsider their options.

The Campaign group is also working on ways of helping people in the Croydon area, who could potentially be affected. For the time being, Croydon CCG has said specialist baby milks can still be prescribed where 'clinically necessary', although they have by no means made it sound permanent. The words 'At this moment in time...' have been used, in the communications that I have seen.

If you live in the Croydon area and would like to contact your MP, or complain to the CCG, please contact the Campaign, who would like to work with you. They have also set up a website see here.

The Campaign group is also advising people to keep an eye on their local CCG, in case similar proposals are made in other areas of the UK.

Please follow the Campaign on Face Book and Twitter and share their posts to create awareness. The worry is that where one CCG leads, others may follow. We really are all in this together.

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


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


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.


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.


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!!


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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