It’s NICE to be heard: Feed Advocate group drive change in national guidelines
Today marks the publication of the latest NICE guidelines that cover aspects of infant feeding: Maternal and child nutrition: nutrition and weight management in pregnancy, and nutrition in children up to 5 years.
NICE (National Institute for Health and Care Excellence) guidelines are like a trusty satnav for health and care - they help professionals, patients, and carers stay on the right track with evidence based advice. Whether about treatments, care, or keeping communities healthy, they've got it covered. Some guidelines, including those published today, include guidance on infant feeding, with the aim of ensuring babies get the best start and parents feel well supported.
NICE guidelines are widely seen as an authoritative source in healthcare and provide a strong framework to ensure care is consistent across the NHS. Deviating from these recommendations is rare and usually only happens when a patient’s unique circumstances require a different approach. For most healthcare professionals, NICE is the gold standard.
How can we ensure NICE guidelines centre the needs of women and families?
We get involved! NICE guidelines are developed through a rigorous process of review and consultation, and it’s part of our remit here at Feed to ensure we uphold standards of evidence that underpin infant feeding guidance and represent the views and experiences of women and their families; Team Feed never passes up this opportunity to create positive impact on women in the postnatal period! So, having previously consulted with NICE on their post partum guidelines, and found a few nice things and a few not so nice things, we dove straight in to the latest consultation with our critical appraisal cap firmly on.
Following our initial review, we enlisted the insights of our powerhouse Feed Advocate group to gather their input on our response and make sure we hadn’t missed anything. As always, they rose to the challenge highlighting a few important principles we had initially overlooked, and bringing their unique perspectives and lived experience to the table.
The result was a much improved consultation response from Feed, centred on the needs of women and babies, which has now been published in full (scroll to page 55 for the Feed responses).
Feed helped shape the new guidelines!
Following the consultation process, NICE amended the proposed guidance to accommodate the #FEEDback received, including amending the guidance based on specific points raised by Feed and our Advocate group!
While not all of our suggestions were acted upon, the acceptance of a few is a total win for women, and we thank our Advocate group for taking the time to engage with the process and represent the insight and experience of women and their families..
OUR THREE NICE WINS
WIN ONE: #FlexibleFeeding: NICE acknowledged that feeding is not just exclusive formula feeding OR exclusive breastfeeding.
“NICE acknowledged the importance of supporting parents in infant feeding regardless of the method... combination feeding is now acknowledged”.
There is still a long way to go with the language used around supporting all infant feeding methods and how this is translated into practice, but for now, we will pull a mini party popper.
WIN TWO: Improved clarity on Vitamin D
The recommendations around vitamin D supplementation have always been a little confusing, but thanks to our #FEEDback, NICE have made changes, including adding a table to help Mums know when they need to be taking supplements and when they need to be giving supplements to their babies. We have broken this down in #TheScoop
WIN THREE: Recognition of the financial burden of infant feeding
While there had been a nod to costs associated with formula feeding in the draft guidance, it wasn’t explicit and there was little mention of the costs of a healthy diet for breastfeeding Mums. However, with a little nudge from Feed, NICE have now updated their guidance to include
“a recommendation about being aware that parents from a low income or disadvantaged background may need more support to continue breastfeeding, and healthcare professionals should also signpost to government and local schemes”.
NOT SO NICE: OPINION OVER EVIDENCE
Despite the wee wins, overall Team Feed were left feeling more than a little frustrated, not at the devil in the detail, but at the pitfalls in the planning. There were a couple of key points that NICE and Feed fundamentally disagree on because they are not evidence based, but rely on expert opinion. While expert opinion can be valuable, it shouldn’t be the sole basis for evidence based guidance because it relies heavily on individual judgement and experience, which may not always be supported by rigorous research or comprehensive data. It tends to be more subjective, and there’s a greater risk of biases or personal interpretations influencing the conclusions.
NICE state that introducing formula milk will detrimentally impact a Mums milk supply.
As was pointed out in the consultation by more than ourselves, warnings against introduction of formula based on perceived risk to breastmilk supply creates alarm and promotes an all or nothing approach to breastfeeding. Making such a statement based on expert opinion is problematic for a number of reasons, not least the potential for increasing delays in introduction of formula in cases of under nutrition. More so, where is the support for women? We know the vast majority of women will introduce formula at some stage, and if the premise that this will impact on breastmilk supply is actually true, then where are the recommendations for tools to help women successfully introduce formula? Where are the recommendations for conversations about successful mixed feeding methods? We think this is an area of research NICE should be prioritising, but they disagree with us and are happy to rely on their expert opinion rather than evidence.
NICE state that a malnourished mum will produce amply and nutritious milk to adequately feed her baby.
The NICE panel stated that their was no evidence to suggest that maternal under nutrition impacts on breastmilk supply. Feed provided evidence to demonstrate that milk supply, composition and potentially infant health can potentially be impacted by maternal under nutrition, and recommended to the panel that this should be investigated as a priority, so support can be tailored to maternal needs. However, the panel felt that research papers we provided were “out of scope” for their review. So which is it? No evidence, or out of scope? Regardless, our call for further, UK specific research was not heard.
NICE prides itself on a process underpinned by reviewing evidence and generating evidenced based recommendations, and where the evidence is lacking they address this by grading the existing evidence and calling in expert panel members.
But what if they don’t review all the evidence because it is “out of scope”? What if their expert panel are an echo-chamber? What if there consultation is just performative? What if they shy away from recommending research in areas that may challenge their existing biases?
Our frustration at the dismissal of evidence that challenges long held opinions on infant feeding, and the refusal to champion research that would answer the questions that Mums and healthcare providers have just adds fuel to the fire in our bellies at Team Feed. We will continue to ensure that infant feeding guidelines and policies are fit for purpose and to call out the bullshit when we smell it.
If you would like to become a FeedAdvocate and have a voice in these matters, you can read more about the process and join here.
Team Feed x
