Data matters: why we need to fight for the infant feeding study to be re-instated post May 2015

I have been thinking over the past few weeks about whether I can allow myself a sliver of optimism about a cultural shift in infant feeding in the UK. Within midwifery, mother support groups, health visiting and early years’ services there are many reasons to feel optimistic when you are out and about meeting some of the amazing, passionate and dedicated people who provide support to families every day. Speaking to people in local authorities there is a real understanding of the need for investment in the early years, and programmes to support families around health and well-being are springing up around the country. The lottery funded Better Start programmes are testing the benefit of targeted investment in family support some of the more deprived areas of England and the 1001 critical days agenda has some high profile supporters.

Sadly we may never know whether this investment is, or will, pay off in terms of increasing rates of exclusive breastfeeding, later introduction of complementary feeding and greater confidence among families about supporting good food in the early years. The loss of the UK wide infant feeding survey (IFS) that has run quinquennially since the 1970’s is a blow to everyone working in public health – and the rationale for its demise remains unclear. Despite letters, statements, emails, tweets, radio reporters sniffing around trying to find out how and why it has happened and Government committees expressing their disquiet – it seems the health departments are not for turning on this shortsighted cancellation.

This is not an expensive survey, the Department of Health admitted its contribution over the 5 year period of the study was only 480k – less than 100k per year, which when you consider this study provided baseline data on which most policy documents and ‘strategic visions’ for infant feeding services are based it sounds like a bargain. The data from the 2010 survey supports research and clinical and public health guidelines across a wide range of organisations and areas of public health: from smoking cessation to vitamin supplementation, infant feeding choices, complementary feeding and use of services.

What will replace this data in England? Apparently (so campaigners were told in a letter from Joanne Miles, Ministerial Correspondence and Public Enquiries, Department of Health) we will have data from ‘NHS England official statistics, surveys of women’s experiences of maternity services undertaken by the Care Quality Commission and the National Perinatal Epidemiology Unit at Oxford University; and from 2015, the Maternity and Children’s Dataset’.

Will these pieces of data give us the richness of data that the IFS did? Well the NHS maternity and breastfeeding statistics simply give us ‘the number and proportion of mothers’ who have initiated or not initiated breastfeeding and the number and proportion of infants who have been fully, partially or not at all breastfed at 6-8 weeks’. This may be data collected for every child in theory, but the latest report from the health and social care information centre tells us this:

In England the breastfeeding prevalence at 6-8 weeks was not published in 2013/14 due to the number children with no recorded status of 6-8 week breastfeeding prevalence being greater than 5% of all eligible children.

In 2012/13 prevalence at 6-8 weeks was 47.2%, in 2011/12 47.2% of infants due a 6-8 week check were being breastfed at 6-8 weeks.

In 2013/14 30 CCG’s failed to pass validation checks. 68 failed as the number of eligible children submitted failed to meet the -10% +20% number of expected children.

An additional 62 CCG’s failed due to more than 5% of their eligible children having no breastfeeding status recorded, among the CCG’s that failed on 95% recording coverage validation failures was NHS Richmond CCG where the 6-8 week breastfeeding status of 85.3% eligible children was not known.

Doesn’t entirely fill you with confidence – and this is just simple tick box data, with no context, no background, no explanation.

Maternal experience of services is valuable, but not related to the work many of us do in infant feeding per se, so what of the new 2015 Maternity and Children’s dataset? Looking at information on the health and social care statistics website the maternity dataset seems to have nothing of relevance to infant feeding, and the only mention of ‘breastfeeding and nutrition’ is in the new children’s dataset (CYPHS) – but it is hard to see what exactly this data will be. The site suggests that this dataset will be made up of data already collected – in Department of Health speak:

‘The CYPHS data set defines an output standard, which is to be compiled from existing clinical records to enable monthly submissions to a central data warehouse. It does not represent a definitive list of data items and values which may need to be captured for care delivery, merely a subset to which local data should be mapped for national submission and analysis purposes’

I could be wrong, but that sounds to me like it will be piecemeal data collected as areas see fit – and as very little data is currently collected in existing records, it is hard to know exactly what they think the ‘breastfeeding and nutrition’ data will look like. But I will keep digging and see if I can find any further mention – or if anyone knows more, do let me know!

So will this combination of data sources replace what we have in any way? It appears doubtful to me – we will lose the richness of the qualitative elements of the infant feeding study and all of the explanatory variables that help us understand how we can support families better and where we should be investing. Depending on what happens on May 7th we will lose this study forever I fear, or we may be presented with an opportunity to fight for it again. Perhaps we should be ready in the wings for the latter opportunity – at a cost of less than 14p per birth in England this rich data source should not be given up on.

Who talks to our regulators? Conflicts of interest in the world of infant feeding.

I have been writing statements this past week to provide some sensible evidence based information on machines for making up formula, granola and cereal bar supplements for pregnant and breastfeeding women and a new formula launched, under the radar, by Aptamil. Gathering the evidence together can be time consuming – and I am not an expert on many of these things – but if we don’t provide some timely information and advice for those working in the field (who just don’t have the time to investigate these things for themselves), who will? More challenging is how we try and get action from regulators when products are marketed that may not be safe, which make unreasonable claims or which may undermine public health messages. People are often surprised that even when information given out publicly is not backed up by scientific evidence – or UK policy – we have little recourse to challenge it or complain.

Aptamil have just launched a new first formula into the NHS (Aptamil Profutura) for which they are making claims that are not supported by expert committees that work independently. Danone the parent company can send letters and emails to health professionals making claims, they can put data on their health professional website, make claims in the NHS Supply Chain bulletin – and all of this is considered ‘factual and scientific’ information to healthcare workers– even when the claim is that the product is ‘the closest to breastmilk’ – a statement which regulations specifically state cannot be made on product labels.

So what do we do? We write to the regulators, the DH civil servants responsible for maternity services and infant feeding and the NHS supply chain managers – we challenge the companies, we tell health professionals through our newsletter and encourage them to complain too – but rarely are replies forthcoming from those in power that will challenge the status quo. The companies refuse to accept that they are bound in any way by accepted scientific opinion, and remain unchallenged by regulators who do not want to ‘stifle innovation’ in the market. I recently asked an FOI question to the Department of Health about the number of meetings held between DH officials and the formula companies or their parent association. This is what they told me:

In the last 12 months, officials within the Department have undertaken a total of 11 meetings with organisations outlined in the above request.
Details are as follows:

Danone (Nutricia)
18 March 2014
21 October 2014
22 January 2015

Nestle (including Vitaflo)
29 May 2014
25 June 2014
29 August 2014
02 September 2014

Mead Johnson
10 June 2014
04 November 2014
13 February 2015

Joint: British Specialist Nutrition Association (BSNA), Danone (Nutricia), Nestle (including Vitaflo) and Mead Johnson
9 June 2014

And as Baby Feeding Law Group (the umbrella body of health professional and mother support groups protecting infant feeding, and including The Royal College Paediatrics and Child Health, Royal College Midwives, NCT, Baby Feeding Law Group, First Steps Nutrition Trust) we have had one meeting to discuss general issues around supporting infant milk regulations, and one meeting to discuss the proposed delegated acts for the new EU regulations on infant formula, in the past 3 years.

BSNA pay their CEO over £100k a year to work with government, regulating bodies and healthcare professionals in the manufacturing and supply of milks and foods’ and Nestlé and Danone are two of the top ten multi-national food companies worldwide with enormous power and reach. I am not sure we even have a playing field, never mind a level one.

So what next? If we can’t rely on our regulators to protect families from misleading information do we need to try new tactics and harness some people power to shame these industries? I will muse on that for the next blog.