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Open Letter to Dr Chris van Tulleken - "The Doctor Who Gave Up Drugs"

Posted by Jolene BEatson on June 2, 2018 at 10:25 AM Comments comments (8)

Dear Dr Chris,


I am writing to you in this open letter format as I am hoping to undo some of the damage done by the second part of your programme "The Doctor Who Gave Up Drugs". A programme which raised important questions that need to be asked about over use of drugs, I'm unhappy to admit that as a parent I have probably reached for the Calpol on occasions where it wasn't absolutely necessary.


You chose to use Cows Milk Protein Allergy as an example of this over prescribing of drugs in episode 2.


This is a topic that is close to my heart, but from a very different angle to that which you have taken in “The Doctor Who Gave Up Drugs”, I will come back to this after I have looked at some of the key points you raised in the show.


(12:03) You stated that CMPA formula prescriptions have increased by 500% in the 10 years to 2016, and that since you became a parent yourself “and although only around 2% of babies suffer with the condition” you “keep on hearing about it" and you state “This seems like quite a new thing to me, it’s not something I’d ever heard of and it’s not something Lyra’s grandparents weren’t aware of. What is driving that? Is it a new epidemic of infants being allergic to cows milk protein or is it something else pushing that public awareness? ”


8 years ago I hadn’t heard of it, my partners and my parent’s hadn’t heard of CMPA, but my partner was allergic to milk as a baby, so it did exist, it just wasn’t well documented or understood.


You then went on a train to Newcastle to a study day sponsored by Nutricia early life nutrition, to investigate how the relationship between HCPs and Nutricia works.


(15:40) You reappear from the seminar with information which has “advertising” and you question if this is advertising and science/medicine being muddled. You say “When I go to the GP I think that he has got his knowledge from medical school and achedemic journals not from a company who’s product he then ends up prescribing”


This is a very good point, perhaps you should have investigated why General Practice medicine doesn’t routinely educate about the most common infant allergy at medical school. Perhaps you should have tried to find out if this allergy did indeed exist 30 years ago and how it was managed back then.


(16:30) You then went on to speak with an allergy clinic and discussed how the websites which are aimed at GPs and contain the MAP (Milk Allergy in Primary care) diagnosis algorithm are sponsored by the same makers of the medical formula and question that this may be a conflict of interest.


You failed to point out that these guidelines were written without the backing of any formula companies and had been in circulation for some years before the introduction of the “ACT” movement, but they were not being used as they were difficult to find online.


You failed point out that this same guideline on that same website also tells a GP what to do if a breastfed baby presents with the symptoms and this doesn’t involve the trial of a CMP free formula, in fact you didn’t investigate the breastfeeding angle at all.


You also failed to point out that for babies suffering with the delayed type allergy (non IgE) the only way to diagnose it is by removing the cows milk protein from their diet (or mums diet for BF) for a length of time observing the symptoms and then reintroducing the cows milk protein back in to their (or their mums) diet to see if the symptoms return.


You didn’t investigate what happened to babies who had CMPA before these guidelines were available, prior to the increase in awareness and increased prescribing of specialist formula.


The ultimate point you were (I think) trying to get across is that the medical profession are being influenced bthe very people that are profiting from the increased diagnosis of CMPA in babies, and that this is causing over prescribing of specialised infant formula milks.


You didn’t speak to any parents like myself who had babies with CMPA before the formula companies collaborated with specialists in the area and created these websites.


(19:30) You the BBC research team found a mum who had been inappropriately “diagnosed” with CMPA and prescribed a hypoallergenic formula. This happened at an emergency room appointment and this mum felt that she had been through "a terrible ordeal".


I agree this single case was an unfortunate misdiagnosis, but this one case is not representative of an epidemic of misdiagnosis and over prescribing of formula and it is not the “nightmare” you called it out to be. What my daughter, my partner and I went through was a nightmare, I’ll come to that soon.


(39:30) You visited your daughters baby group and spoke to some mums who had concerns that their babies showed the symptoms and asked them where they found their information about CMPA, and they told you google. You performed your own Google search and again came across formula company websites, but there are independent sites out there, this very site for instance, but I can only assume that we weren't mentioned as we didn't fit the agenda.You then went to speak to Dr Adam Fox who tried to explain to you that delayed diagnosis was, in the past, rife and detrimental to the child. You then question about the allergy academy and what influence the formula company have over these education events.


Whilst I understand your point, and I do agree *to a certain extent, I have witnessed been one of the driving forces in this increase of awareness, and it is not the terrible thing you made it out to be, quite the opposite in fact.


I have to agree with Dr Adam Fox before the big companies with money began promoting the MAP guidelines babies were being fed diets that were causing them real harm, for prolonged periods of time causing lasting lifelong damage in some cases, this is not something these formula companies have made up, it was still is a real issue.


It appears to me that you have scapegoated CMPA purely to prove your point in “The Doctor Who Gave Up Drugs” in a programme 57:47 minuets long, you dedicated a mere 15 minuets to CMPA and only to make the point that Nutricia sponsor some websites and training, you did not balance this argument with any real facts about the condition or look at it from an unbiased veiwpoint.


As the founder of CMPA Support, I have been asked when I will be releasing an official response to the programme, as Danone/Nutricia did directly to the BBC which you read out on the show (22.08), and Allergy UK have to the members of their Facebook support group. I have been thinking about how to respond during the past few days whilst I’ve been away with my family. The simple answer is, I can't respond in a tweet or Facebook post.


CMPA Support have never received any funding or sponsorship from the formula companies, we are a truly independent support network for families affected by milk allergy and multiple food allergies in children, so I don’t feel the need to defend our patient group in the way Danone and Allergy UK have had too.


The only way I can respond is to try and balance your argument by telling you my story of what it was like before these websites existed and before CMPA Support was founded, mine is just one of many true “Nightmare” stories of what parents faced before awareness of CMPA was increased.


Niamh was born on April 23rd 2010, she was born naturally with no problems and received a 10 on her Apgar score. I on the other hand was not so well, I had to be rushed into theatre to remove the placenta that my body didn’t want to give up, this resulted in a severe PPH and I was in intensive care for 24hrs after 4 hours in theatre. Unfortunately, this meant that I was unable to breastfeed Niamh for the first 24hrs and she was given a small “top up” of regular formula milk whilst I was recovering, this is what triggered Niamh’s allergy to CMP, but I was not to know this for some time yet.


Once I reached the normal ward with my new baby symptoms started to appear, she had a red rash on her face where my breast milk spilled on her and she was passing loud, foul smelling wind which one of the midwives on the ward thought must be a stool which I was ignoring, but she found the nappy empty when she attempted to change her on my behalf. We were on that ward 2 days and in that time Niamh did not pass a stool, only the foul wind, and we were discharged believing what the midwives told us that she just had “sensitive skin” and “it’s normal for new-borns not to pass a stool for days at a time”.


Once home, things didn’t improve. When Niamh was 5 days old she finally passed a stool, but this stool wasn’t what I expected, I wasn’t a first-time mum I knew a breast fed infants stool to be loose, bright yellow in colour and odour free. What appeared in my daughter’s nappy was what looked like a few pale brown rabbit droppings surrounded by mucus which was tinged pink. I thought this must be blood and immediately called my midwife, who reassured me that baby girls do sometimes bleed in the days after birth and this is normal, something hormonal and not to panic it would go away. I expressed concern that she had passed a strange stool but the midwife assured me that this was also normal after birth.


Reassured for now I continued as normal but Niamh’s skin on her face was getting worse, every time my milk touched her skin it would burn, and it burned on the way out also leaving her with horrendous “nappy rash”.


By her 6 weeks check she had yellow spots appearing all over her face so I asked her GP what this could be and the GP told me it was “baby acne” that it was normal and it would clear up by itself. By 6 weeks old Niamh wasn’t sleeping, she would cry all through the night, tensing and making loud foul-smelling wind, I was told by the same GP that this was colic and normal, and she would grow out of it.


I can not count the number of times I went to see the GP or Health Visitorand was told my daughters symptoms were normal and would be “outgrown” and “not to worry”.


I was worried, as I said she wasn’t my first and I knew there was something wrong with her feeding, she would never feed for more than a few minutes, and never seemed satisfied after feeding. My partners parents told me that her dad had been given soya milk as a baby because he was lactose intolerant, but he was formula fed so I thought that couldn’t be the case with Niamh because she was breastfed, so I ignored this.


Her skin by now had turned to angry bleeding eczema on her face, arms, knees and chest. She was gaining weight but it was slow, much slower than my son. At around 4 months I tried to introduce formula, I thought maybe my supply was low but she wouldn’t take a bottle, she wouldn’t even take expressed breast milk. I tired every bottle on the market until eventually when she was 6 months old she finally took a full bottle of formula, I could have cried I was so relived to have my little girl appearing “milk drunk” it also happened to be the same day that we introduced a couple of spoonsful of a petit Filous yoghurt as her first taste of solid food.


The following day Niamh was very unhappy, she was crying uncontrollably holding her made her worse she was drawing herself up and wailing in such a way that I had never heard a baby cry before. My partner called from work and could hear her screams down the phone, he knew she wasn’t right also. Eventually she passed a stool, so I took her to the changing table. When I removed her sleep suit I noticed that the outside of her nappy appeared pink, but the biggest shock came when I removed the nappy, I still have the image I sent to my partner, so he could leave work. This is what faced me when I removed that nappy.


I called NHS Direct whilst I waited for my partner to return home and I was advised to seek urgent medical attention, we took her to Sheffield Children’s Hospital. At the hospital she passed another 3 mucusy bloody stools, I was terrified. I had been a medical claims assessor and I knew that one of the main symptoms of bowel cancer was fresh blood in stools, I knew this was unlikely in such a young infant, but this was where my mind was at that point.


In A&E Niamh had her blood taken, she was weighed, and we were asked what she had consumed in the passed 3 days. We were then admitted to the emergency admittance ward where we saw a very young Doctor, I asked if he had any idea what her symptoms were and he straight away said, “I think she’s allergic to cows milk”. I was confused, she hadn’t had any cows milk, she’d had breast milk, some formula and a yoghurt! This young Doctor explained to me as well as he could about milk protein and that these proteins are in all foods that are made from cows milk, including infant formula, and if I was consuming dairy, my breast milk also contained Cows Milk Protein.


We left the hospital the next day with an emergency referral to the dietetics department as Niamh’s weight was worryingly low, she was 13lb3oz at 6 months, barely double her birth weight of 6lb11oz and this had not been flagged as worrying by the Health Visitors she had been weighed by at her regular checks, the fact that she had eczema, mucosy stools, colicy symptoms and cried uncrollebly at night was not linked together and she hadn't been diagnosed in primary care when she should have.


When we finally went to her appointment 8 weeks later we were offered an EHF milk, I only used this for weaning as I was still breastfeeding althouhg I had mentioned I wanted to move on to formula. I was also advised to give her high calorie foods and basically to get as much high fat nutrition into her diet as I possibly could. Unfortunately for her, this EHF milk made her projectile vomit, something the consultant at SCH saw for themselves as Niamh threw her breakfast all over the weighting room at one appointment. After this, and after begging for help as I had Gall Stones which couldn’t be removed whilst I continued to breastfeed, I was given Neocate. Foul tasting, foul smelling, foul looking, but Niamh drained that bottle like I’d never seen her drink before, it’s like she knew this milk wasn’t bad for her, she knew this milk was nourishing her, she knew this milk was going to make her better!


Later we realised that Niamh also had an allergy to Soya and with the help of the dietitians we excluded all CMP and Soya protein from her diet and things slowly improved, by her first birthday she had started gaining weight and she was finally smiling, and good for all of us, sleeping!


So on balance, had Niamh been born in 2018, when awareness of CMPA is high maybe I would have spotted the symptoms, maybe when I googled them, which I did even in 2010, I would have found out about CMPA and learned that by simply not eating cows milk she would have got better, gained weight and perhaps she would have outgrown her allergy much sooner than she did, but we will never know that now.


I created CMPA Support by accident. There were no support groups to turn to when we were given Niamh’s diagnosis, I was completely alone. Living in Sheffield with it’s large Vegan population made finding alternatives to milk easy to find, but when Niamh was 20 months old we moved away from the big city and I found myself alone and unsupported in a small town with no vegan shops, no alternatives to dairy and I broke down in the middle of the isle in Tesco a few weeks before her second birthday.


I set up a group on Facebook, added a few friends who I knew had to follow special diets, either for themselves or for their children, as I thought we could share recipes and help each other out. This group quickly gained more members who all had stories like my own, stories of going through hell for months on end with babies who no one in the medical profession seemed to be taking seriously. This is when I realised that there was a huge problem with CMPA not being known about amongst the very people who should know about it, Primary Care Medical Professionals.


In the 6 years I have been running CMPA Support and the 8 years I have been a mum to a child with CMPA I have seen the changes happen, that single support group is now a network of support groups, for weaning a CMPA baby, breastfeeding a CMPA baby, reintroducing milk into the diets of babies/children outgrowing their allergies, our main group alone has 30k members at the last count. When we first started members were joining with stories like mine, 6 months, 8 months, 12 months and more of hell, today most members are joining with very young babies trailing formula or dairy free breastfeeding within the first 6 weeks of life, this is a good thing and I believe that this is due to the work done by the allergy specialists and formula companies combined, and it is work that I, as an independent advocate support.


I said at the top of this very long letter that I agree to a certain extent that the formula companies are too involved, it is the reason CMPA Support very rarely share the websites found in your Google search, and why I disassociated CMPA Support from Allergy UK and The Anaphylaxis campaign, I didn’t want CMPA Support to be associated with formula companies in any way, I wanted us to remain an independent voice, advocates of breastfeeding and I’m please to say we have done this. I can however, see that the collaboration between these companies and the specialists like Dr Adam Fox, have improved the rates of diagnosis, but there is still a long way to go before things are good.


This isn’t to say that I have never been involved with these companies, on a personal level I have worked with Nutricia on several occasions as a “Neocate mum”. I appeared in you tube interviews to help parents, I’ve helped with the content for their parent app, I’ve even given a talk at their global conference a few years ago. I am certain in my own mind that for Nutricia at least, they care deeply about their patients, not just the ones who use Neocate, but all the patients all over the world who use a Nutricia product, from those in intensive care who require tube feeding to those with diseases I don’t understand which require advanced medical nutrition who without Nutricia, would be a lot unhappier and probably hungrier.


In summary, you have picked on a condition that many people have worked hard over the last 10 years to raise the profile of, to prevent babies and their parents from suffering long term and in the 15 minuets that you talked about it, you made a mockery of all that hard work. You could have come to CMPA Support and spoken to the parents who were undiagnosed for months, the parents who have a diagnosis and get little or no support, the parents who are concerned their babies may have CMPA but must battle their GP’s to even get a trial of these specialist formula. You should have investigated what things were like before the MAP guidelines were written and asked why the Medical Profession is leaving it to the formula companies to provide education rather than training front line staff at medical school. You shouldn’t have ostracised Dr Adam Fox for wanting babies diagnosed early to prevent them from having lasting problems from long term exposure to a protein their body attacks.


In the aftermath of the show, you accused some of our group members of being company bots on Twitter, I can assure you this was not the case, these were real people who felt so upset that you used CMPA to get your point across and in doing that trivialised a condition that causes absolute misery, not only for the baby but for the whole family of that baby.


I on a personal level lost a lot of respect that I had for you, and your brother by association, I have enjoyed watching “Operation Ouch” with my children on many occasions, and did hope that one day you might cover allergic diseases in children.


Finally I would like to formally invite you to come and join our support groups, and see for yourself the real truth about CMPA, if you really feel the increase in diagnosis has been in some way exasperated by the formula companies, come and see what the real issues are and use your celebrity influence to change it, rather than sensationalising it and blaming the “evil formula companies” for ratings on a TV show.


Yours Sincerely,

Jolene Beatson

Top Chefs attack new EU allergen laws.

Posted by Jolene BEatson on March 10, 2015 at 5:25 AM Comments comments (16)

In an article in today's Telegraph it has emerged that more than 100 top chefs have written to Peter Dominiczak, Political Editor of the telegraph.

The reason they are writing to him is that they believe the new EU legislation on how the top 14 allergenic foods are identified in foods sold loose or prepared on site for consumption, are going to cause "significant damage" to the catering industry.

 

Let’s put the new EU law in to perspective. The top 14 allergens are: Eggs, molluscs, crustaceans, celery, milk, fish, treenuts, sulphites, soya, sesame, peanuts, mustard, lupin and cereals containing gluten.

 

The letter of the new law states that if a product sold loose or a meal prepared onsite contains any of these allergens, the person or business selling them must have the knowledge to provide the information upon request, to a customer who asks for it.

 

It's really that simple. The law doesn't say they must remove the allergens from their dishes, it doesn’t say they must provide a complete breakdown of every ingredient in their dishes, it doesn’t even say they must provide the information in writing, verbally communicating the information is acceptable (something which any chef should be able to do without a second thought, after all chefs never stop bleating on about the importance of provenance of ingredients.)


 

So why are these chefs getting so hot under their chefs whites?


 

"The letter states: “As chefs, restaurateurs, hoteliers and caterers, we are concerned about the bureaucratic nightmare the recent EU allergen regulations have imposed on our businesses.

 

“And it is not just the cost. They will reduce the spontaneity, creativity and innovation restaurants and others in the industry have enjoyed up until now.

“We need real change in the EU as the last thing small, independent businesses like restaurants and cafes need is to be hampered with further regulations and an even longer rulebook.”

 

Point one, cost:

 

The new EU law does not have to cost anything, it's simply knowing what is in the food you prepare (and if the chef is preparing food from the raw ingredients should know this anyway) and being able to tell the customers who ask is all that is required. If the dish is written up on a chalk board, add a little initial or symbol to alert customers to the presence of allergens.

Providing allergen information doesn't cost anything, and to create a matrix is simple, here is one I've just rustled up, you can have it for FREE!!


 

Point two, spontaneity, creativity and innovation:

 

The EU law does not have to impact the chefs spontaneity, creativity and innovation, if the chef writes notes when they're creating new dishes, they already have the information to give when requested in any of the ways outlined in point one.

secondly, if a chef wanted to provide for the millions of sufferers of food allergies, intolerances and food related auto immune diseases in the UK (and the EU) they could use their Creativity and innovation to create dishes without any of the top 14 allergens present, doing so would create a storm in the allergy and intolerance community, and that would increase business and reputation.

 

So cost and creativity aside, what else is taking these top chefs to boiling point?

 

"Miss Miers, who won BBC cookery competition Masterchef in 2005, said: “It is a total fiasco and in my view is the responsibility of the allergee to ask, no the restaurateurs to list. I had a severe allergy for 6 years so coming at it from both sides of the fence.”

 

Yes Miss Miers, your correct, it IS the responsibility of the 'allergee' (we prefer allergy sufferer) to ask, and it is YOUR responsibility as the chef/business to PROVIDE the information. Enough said on that point.

 

"And Ms Leith said: "These new rules on the labelling of allergens are a bureaucratic nightmare that will inflict significant damage on the catering industry, particularly on smaller business – which must be assessed before any more damage is done."

 

The only damage being done here, is to your own reputations as chefs, to openly admit to not know exactly what is in the food your cooking is surely damaging your business, after all, who would want to eat out if the chef doesn't know what is in the food they are preparing?

 

"Matthew Elliot, from campaign group Business for Britain, which organised the letter, added: “This is a costly overreaction from Brussels using a regulatory sledgehammer to crack a nut. Diners with allergies can and should be able to eat out with allergies, but this has unfairly placed too great a burden on the catering industry which will hurt customers, and in particular small independent businesses.

“These rules have come straight from the EU with little debate or warning at home. They are unaccountable to diners and businesses across the UK.”

 

We in the allergy community whole heartedly agree that you are creating a mountain out of a mole hill, we also agree that the implementation of the new law could have been handled better by our Food Standards Agency, but that is another issue.

The simple fact of the matter is, all the law requires businesses to do is be aware of what is in the food they serve so when someone visits their restaurant, deli, cake stand etc. etc. and asks for information about allergens, it can be provided.

 






 






Happy New Year 2015 from CMPA Support!

Posted by Jolene BEatson on January 12, 2015 at 8:40 AM Comments comments (1)

 

Happy New Year 2015 from CMPA Support!

 

 

2014 was a fantastic year for CMPA Support, we ended the year on a fundraising high, following an amazingly successful #MOOvember and December selling “Magic Reindeer food!”

 

We’re still receiving donations of funds raised for both events, but the running totals are fantastic, and it looks like we may have raised close to £2000 through the events!

 

A huge well done and thank you to everyone who took part in an event, bought a ribbon, made and sold Reindeer food or shared a post!

 

Our next step is to decide how we use the money we have raised, we are going to be using some of the funds to upgrade and redesign our website however we do not anticipate that this will use up the total funds we have sat in the account. There are various ways in which we could use the funds, and we need the input of our followers to help us to decide how best to use them in order to fulfil our charities aims and have maximum impact.

 

In order for you to have a say on how the funds raised now and in the future are used you must first become a full member CMPA Support. Membership is £10 per person for 2015 (fees cover administration costs) and comes with the following benefits-

 

1) Members are invited to join the exclusive member’s only CMPA Support Facebook Group and website forum.

2) CMPA Support pin badge.

3) Monthly newsletter.

4) FSA Allergen alert updates.

5) *Members will receive a quarterly Magazine filled with special offers, coupons, recipes, information and support!

6) *A membership card which entitles the barer to exclusive member offers including free entry to CMPA Support Play Groups.

7) ICE cards.

8) Chef Cards.

9) Translation Cards for trips abroad.

10) Ingredient avoidance cards for each allergen affecting the family.

11) Copy of our annual charity report.

12) Right to apply to join the committee, attend the charity AGM and volunteer for the charity.

*Some of the benefits mentioned above will only become available when enough members have joined CMPA Support. The benefits are provided by third parties once a certain number of members join.

CMPA Support groups are only available in selected towns and cities at this time, more will become available as the foundation grows and more funds are raised.

 

If you would like to join CMPA Support please request and print the application form by sending an email to [email protected]  complete and return with the fees to the address provided. Please allow up to 6 weeks for delivery of your membership pack.

 

By joining CMPA Support you will also gain the right to volunteer for the charity in a variety of roles from support group admin to website editor, we will be recruiting throughout 2015 and we would like to fill our staff with likeminded parents who understand the daily struggle of living with food allergies. If you have an interest in volunteering for the charity and/or joining the committee please remember to state this on your member application form.

 

Raising funds was only half the story in November #MOOvember was not only about raising money, it was about raising awareness of CMPA too, and raise awareness we did!

 

During November our Facebook page (https://www.facebook.com/CowsMilkProteinAllergySupport" target="_blank">Cows Milk Protein Allergy Support) received 487 new likes, and our posts reached out to over 25,000 Facebook users!!

 

That is directly down to you, our page followers, interacting with our posts, as the graphs below illustrate;


 

As you can see, there is a direct link between the number of Likes, Comments & Shares and the number of people our posts reach, so please keep interacting with our page, there is so much more to come in 2015!

 

 

You may wonder why you don’t receive updates of every post made on the CMPA Support Facebook page, this is due to the fact Facebook “serves” our posts to a percentage of our page followers, they do this because they want us to pay to promote our page and posts, CMPA Support do not believe that we should be spending the money we work so hard to raise on promoting our Facebook posts, so we rely on our followers to “like” “share” and “comment” on the posts they are served.

 

There are ways around this, if you want to see all of our posts you can add our page feed to your Facebook Feeds, you can do this by following these simple steps

 

1. Make sure you have “Get Notifications” checked, you will find this by clicking the arrow to the right of the “Liked” thumb on our page – this feature isn’t available through the Facebook app, you must visit our page through your browser to change this setting.

 

 

2. Create a page feed list – you can add all of your favourite pages to a personal news feed! There is a really simple way to do this, again the option is only available via a browser, not the Facebook App. Beneath the option to check “get notifications” you will see an option to “Add to interest list” click this

 

3. Click “create new list”

4. Select your favorite pages and people to add to your list from the menu on the left and click next.

5. Name your list and select privacy options for the list and click “done”.

6. You will find your list on your Facebook side bar, scroll down until you find your “Interests” tab

7. Hold your cursor over your new feed and a settings cog will appear, click “add to favourites” .

8. Your new feed will now appear in the list at the top of your page, you can rearrange the order of your favourites by holding your cursor over the settings cog, clicking “edit” then “rearrange” and dragging the feed to you preferred spot in your list. (TIP: You can add groups to your favourites and move them around in the same way!)

9. When you have your feed in your favourites list you can check it just like you do with your usual news feed, from the App or via a browser, and you will know when there are new posts waiting by the number at the side of the feed title.

10. Alternatively, you can follow the public feed we set up and add too regularly, the Allergy/Free From feed has over 100 pages of interest, simply follow this link and click follow.

 

 

Coming up in 2015

 

• CMPA Support eBay store – we are looking in to the possibility of opening an eBay store from which we will sell ambient free from food products, initially we will stock seasonal items such as chocolate Easter eggs, and these will be discounted to as near to wholesale prices as possible for CMPA Support members (a good reason to get your membership application forms in quickly!)

• You Tube video channel – we intend to start a You Tube channel this year where we will post videos to raise awareness, supportive vlogs, and step by step recipe videos.

• Fundraising events, MOOvember will be back with a bang in November and we will be raising money through the sales of Reindeer food once again. We will also be starting a new fundraising campaign to raise much needed funds to get our Play Group scheme off the ground.

 

 

 


 

MOOvember is upon us!

Posted by Jolene BEatson on October 9, 2014 at 6:50 AM Comments comments (1)

November is nearly upon us, which can mean only one thing, it's nearly time for "MOOvember" our nominated Cows Milk Protein Allergy awareness month!

 

For 2014 we are launching an awarness ribbon campaign, to help us raise much needed awareness of CMPA. We hope that our eye catching and unique cow print ribbon will get people talking about CMPA.



Ribbons cost a suggested donation of £1 plus 80p P&P. If you would like to order ribbons please download an order form and return it to [email protected]


You can also attach a "Twibbon" digital ribbon to your profile photo on Facebook and Twitter by following this link, and please don't forget to donate by Texting "MOOV80 £1 to 70070".




 During the month of Moovember we will be releasing many info graphics via social media, and we need your help to get these trending by clicking Like, commenting, sharing, and re-tweeting using our hash-tags #CMPAaware & #MOOvemeber.



We are also asking our members to help us not only by raising awareness but also by fundraising for us.


We are encouraging you to take up the challenge of eating dairy free for 2 weeks from 10.11.14 to 23.11.14 (or longer if you wish) and asking for sponsorship, you can create a Moovember page on Just Giving by following this link Make a fundraising page - JustGiving



There are many other ways you could raise funds, a sponsored hair shave, leg wax, or sporting event. You could hold a bake sale or host a coffee morning, or have a cow print day at your office where everyone must wear something cow print.



If you would like to make a donation to the MOOvember campaign please Text MOOV30 + the amount you wish to donate to 70070



However you decide to join in with MOOvember we want to help you in any way we can so please do not hesitate to get in touch with our fundraising coordinator Sarah by email [email protected]




Rebel Kitchen Review

Posted by Jolene BEatson on June 18, 2014 at 6:10 AM Comments comments (0)


Have you heard about the new kids on the block in the dairy free milk style drink department?


These drinks not only appeal to children, they are also safe for the vast majority of them!

Rebel Kitchen's mission is to provide healthier alternatives, using only a handful of natural ingridients, which are all free from the top 14 allergens;

Water, Cacao, Date Nectar and Coconut milk, with the adition of Orange oil in the orange flavour and crushed bananas in the banana flavour.

They are becoming available in health food shops and online, and they are also available direct from the Rebel Kitchen shop.

Niamh (4) was so excited to try these drinks, she absolutely loved the design and asked continuously if they were for ok for her, she is so used to the majority of her cows milk alternatives being very grown up in comparrison to the fun products that her 5 year old brother has which are targetted specifically at children!

She tried BANANA MYLK first


It was a clear joy for her, "Mummy it tastes like the chocolate lollys you make us!"

I knew exactly which ones she was talking about....

I had a taste (only a taste mind you, she'd nearly drained the carton!) and she was absolutely right, it did taste like my chocolate lollys! It was actually a bit of a shock to me, I was expecting more banana and less cacao, but it didn't matter, it's thick and creamy, which for a non dairy milk drink is a real surprise!


Next under the scrutiny of my mini me was CHCO MYLK


Choco Mylk was not such a huge hit with Niamh, but that is down to her taste, she isn't a fan of any chocolate flavour drinks we've given her so it wasn't a shock to me.

The shcok came when her brother finished the carton, the brother who usually tries dairy alternatives followed by dramatic reactions of "yuc" "yuccy" "blugh!"

So it was a hit, but I didn't get a look in on this carton, so from an adults perspective I can't tell you how this one tastes, but rest assured if Oscar enjoyed it, it must be pretty good!

So last to try was ORANGE CHOC MYLK


I'd learnt my lesson after the choco mylk was finished before I even got a drip, I tried it first, and it was exactly what I was hoping for......


liquid.....



!

It's truely delicious, the level of orange oil is perfect I could have drank the whole carton, but that wouldn't be fair, so I let little miss have a try and I secretly hoped that the chocolate would be too much for Niamh, but...


She loved it, "It's monkey bar drink! Mummy you have to buy some of this!" For those of you who don't know what 'Monkey bar' is, it's Niamh's name for Moo Free's new Chocolate orange bar...

So for me it's liquid Terry's chocolate orange, for Niamh it's liquid 'monkey bar', either way it's devine and will certainly be on our regular order!


The best thing about Rebel Kitchen MYLKS.....

They also make MYLK for grown ups!


This was my turn to taste the CHOCO MYLK :D


It was as I was expecting, chocolatey, a hint of coconut, not too sweet but sweet enough to stop any chocolate cravings.


Next I tried CHAI MYLK



Now I'm a huge fan of a chai latte, and I was hoping this would be a winner, but I didn't enjoy it, it has cacao in it, and I felt this over powered the spices I associate with my chai latte. Don't get me wrong, it tastes lovely, just not for me with the cacao.


And saving the best for last...


GREEN TEA MYLK

Now this was what I expected, there is no cacao in here, but the flavour is spot on, this was the most refreshing of all the Rebel drinks, and my clear favorite!

CMPA Support Fundraising Update - May 2014

Posted by Jolene BEatson on May 23, 2014 at 9:20 AM Comments comments (0)

 CMPA Support is fundraising so that we can improve and expand the support we provide to families affected by childhood food allergies. We are aiming to raise £5000 this year!

Projects we are currently working on include:

Expanding and improving our website to make it more user friendly, to include a search option to help families find the information they need more easily, and to create a forum so that our online support is available to those who don't use Facebook.

Creating "In the community" support groups, play groups, and workshops, so that there is somewhere for families to go to meet and talk to other allergy families, places where families can go to allow their babies/toddlers to play safely without the risk of an allergic reaction, and places to learn how to use 'free from' alternatives.

Creating membership packs, so that families can join us to benefit from and support the work which we are doing to improve the lives of allergy families now and in the future.


We've had a fantastic 6 Months of fundraising and raising awareness of CMPA and other childhood food allergies along the way!


In November everyone was craving Cheese and Chocolate, because it was:

 

 

Many of our members took part in "Moovember" to raise awareness of CMPA. Our members went dairy free for the month and raised money through sponsorship, a total of £285.00 was raised!

A huge heartfelt thank you, to everyone who took part. As it was such a huge success we will repeat this event again in November 2014, so look out for information closer to the time!


You've also been busy internet shopping and searching using:


 

We launched our Easy-fundraising and Easy-search pages in June 2013, it was quite slow going to begin with, but even with only a few handfuls of supporters we raised £202.88 in our first quarter! In the second quarter we raised £147.98 and in the most recent quarter we raised £149.26, making a grand total of £500.12 received from easy fundraising so far! Another huge thank you to those of you who have registered to support CMPA Support!


In November 2013 we asked you all to vote for CMPA Support to receive a grant from:


 

You didn't disappoint, in less than a week we had received enough votes to be granted the £300 payment, to go towards our community support projects. Another huge THANK YOU!!


Some of you have also been busy with your own personal fundraising projects!

We've received one off donations, donations you've sent to us rather than sending Christmas cards, and Hayley Butterworth raised £165 by holding a raffle within our groups, so a special thank you to her and everyone who bought a ticket!

The total amount raised by sundry donations was a massive £324.56! Thank you!http://static.websimages.com/JS/Punymce/plugins/emoticons/img/trans.gif

 

We have started applying for grants from local community funds and we are delighted to announce that we were successful in gaining a grant from:


 

We have received £300 towards our first play group scheme which we are setting up in Darlington in the North East. Our plan is to start with one group and expand them across the UK and Ireland, so that all babies and toddlers and their families have a safe environment free from food allergens where they can socialise in the same way as babies and toddlers who don't have allergies.

 

How can you help us reach our 2014/15 target?

 

There are many ways in which you can help us to raise funds, and we really appreciate every penny you raise and the effort you put in to raising not only money but also awareness of CMPA and other food allergies.

You can raise donations for us without spending a single penny, every time you complete an internet search using easysearch, it really is that easy, just register with easyfundraising and use the search engine. Every time you complete a search by clicking on one of the results and opening the website, you will raise a 0.5p donation, and they soon add up!

If you shop online, you can raise a donation with thousands of online stores by using easyfundraising, it doesn't cost you anymore, and you may even find offers exclusive to easyfundraising which will save you money. If you are a UK tax payer you can even giftaid your donations!

You can also share on your social media sites, to encourage your friends and family to raise money for the charity which is supporting you through your allergy journey.

 

You can send one off donations!

 

We accept:


Just transfer your donation!

You can also donate £1, £3 or £4


You can also pay direct in to our bank account or send us a cheque, please contact us by email [email protected] for details.

If you would like to set up your own fundraising event please don't hesitate to contact us so we can assist you!

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Jolene & Niamh

Posted by Jolene BEatson on January 21, 2014 at 5:50 AM Comments comments (0)

I'm Jolene, and this is my daughter Niamh, who has CMPA and soya allergies.


I founded the original CMPA Support Facebook group in April 2012, and became the charities CEO and one of the trustees in June 2013.


This is my personal allergy journey, so far;


My daughter, Niamh, was diagnosed with CMPA shortly after turning 6months old. I had never heard of Cow's Milk Protein Allergy, and I was so confused! The symptoms which she had suffered from for the previous six months finally had a reason though, and I felt relieved that I hadn't been imagining it all!


Niamh was exclusively breastfed until weaning - she was a very unsettled baby. She didn't cry for feeds, she struggled to gain weight. She also had gastro issues, severe bouts of flatulence which smelled unpleasantly like sulphur, accompanied by screaming for hours at a time, green mucousy stools and bloatedness. She also had eczema, rashes and a constant blocked or running nose. I had visited my GP and Health Visitor on numerous occasions, but none of these symptoms were linked together by them and, as parents, we weren't aware of CMPA so we hadn't put the symptoms together either.


Niamh had severe reactions to cow's milk in the form of allergic colitis (bloody mucousy stools) soon after we started weaning and she had her first ever bottle of formula milk (not through lack of trying, I first attempted to give her formula at 4 weeks but she would clamp her mouth shut and refuse or scream the place down.) Her reaction was so severe we had to go to A&E and following a short admission, she was diagnosed with CMPA the following day. We were referred to a dietitian who advised complete dairy avoidance. After a month her symptoms had not fully improved, and we were advised to avoid soya, within a week she was notably happier, and after 6 weeks she was like a new baby. 


It wasn't plain sailing from there, we struggled to learn how to deal with the day to day management, avoiding cross contamination, what to feed her, how to deal with having to say no to food when eating out ect. We also have a son, Oscar, who is 16months older and he doesn’t have any allergies, so eats a normal diet, and as Niamh got older this came with it's own problems.


I have been on a constant mission to find dairy and soya free alternatives for Niamh, because I never wanted her to feel left out. I felt completely alone in my struggle so I created our first Facebook Group, Cow's Milk Protein Allergy Support (@CMPAsupport), which started with the idea that I wanted to put together a group where you could find dairy and soya free recipes, foods and alternatives to everyday things like milk, cheese, chocolate and ice-cream all in one place.


Over a short period of time the group became much much more, and that is how our charity was born.

CMPA Support Fundraising Update - October 2013

Posted by Jolene BEatson on November 22, 2013 at 9:45 AM Comments comments (0)

As you may be aware our community is growing within all our facebook support groups and with hits on our website. ‘CMPA Support’ now has charity status, which will enable us to develop the community further and enhance the support we can offer.

 

We all understand how isolating, difficult and challenging our journeys living with allergies and intolerances can be and how much we have benefited from CMPA Support.

 

Sadly there are many people out there who don’t know we exist. We need to upgrade our website to cope with the demand of information required, as well as a number of other services we would like to offer in the future, but more importantly we need to be advertise our existence and reach other families requiring support, all however require us to raise funds in order to pay for these developments that will enhance the support we all receive.

 

There are many ways in which you can help us raise funds:

 

  • 100 Club - a monthly (£12 for the year) or weekly (£13 for 13 weeks) draw. Where in return you stand a chance of winning £30 for 1st prize or £10 each for 2nd & 3rd place. Email [email protected] for an application form (Numbers are filling up fast so be quick)!

 

  • Easy fundraising – over 2,400 well known retailers including Tesco, Boots, Toys R Us, Amazon, M&S, Joules, Vodafone, Virgin Atlantic and many more, will donate a percentage (average 5%) of what you spend to CMPA Support when you shop with them simply by following this link: http://www.easyfundraising.org.uk/causes/cmpasupport

 

  • Yellow moon - raise money for CMPA Support when you order arts and crafts supplies from www.yellowmoon.org.uk you will need to use our unique source code – 9658501 when you order online.

 

  • One off donations – via our Bank Account to ‘CMPA Support’ Sort Code: 52-30-18Account Number: 33624062 or through Paypal, trading name ‘CMPA Support’ email: [email protected]

 

  • Fundraising events – if you wish to participate in or help raise money through fundraising events please contact me via email or PM, we can send you a pack suitable to your fundraising event and get press releases sent out to your local papers!

I’d also like to remind everyone to check out the website as its regularly updated www.cmpasupport.org.uk, as well as ensuring that you’re a member of the main facebook CMPA support group.

 

We really do appreciate and value your support in the way I’m sure you value CMPA Support as you continue along your journey.



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