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|Posted by Jolene BEatson on June 2, 2018 at 10:25 AM|
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.
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.