It is no big secret that the NHS is under significant financial pressure from increased cost and numbers of treatments it is having to provide. All NHS Clinical Commission Groups (CCG), the local bodies that buy and commission the health services, are having to look at their spending. Some CCGs have or are making proposals around their prescription spending, particularly over the counter medicines, gluten free food, vitamins and specialist infant formula milk.

A CCG must run a public consultation in order for it to make its decision on a proposal to cut funding. We are concerned that from the public engagement documents we have seen that there is a worrying lack of clarity and significant ambiguity when they talk about prescriptions for Specialist Infant Formula. The very term “Specialist Infant Formula” isn’t officially recognised terminology, but may be accepted to mean an all encompassing set of Infant Formula milks that are prescribed by clinicians.

The engagement documents generally appear to suggest alternatives for lactose intolerance and cows milk allergy interchangeably, despite being different conditions with different requirements.

The documents also assert that cows milk and lactose free alternative formulas are widely available and at an equivalent cost to regular formula, often without providing any supporting evidence.

from NHS Croydon CCG’s Engagement document

It is fair to say that suitable lactose free alternatives are generally available and at roughly an equivalent cost. It’s not fair to make this assertion for cow’s milk alternatives. The only generally available alternative formula is Soya based an is not a suitable alternative based on guidance from the National Institute for Health and Care Excellence (NICE) Link: NICE Guidelines

Babies with Cows Milk Protein Allergy (CMPA), that are not breast fed for whatever reason, require either an Extensively Hydrolysed Formula (EHF) or Amino Acid Formula (AAF) milk to survive. These EHFs and AAFs are classed as Foods for Special Medical Purposes (FSMP). FSMPs have strict rules on how they are manufactured and used. They are significantly more expensive than ‘regular’ formula, in part due to the extensive processing and standards required to produce them. These FSMP milks would be considered a subset of the ‘Specialist Infant Formula’ milks term used by the CCGs and expected to contribute to a significant amount of their spend due to their higher cost and higher relative incidence of CMPA compared to Lactose Intolerance in babies.

We feel the public are not being provided sufficient or the right information when being asked in these consultations. For example:

NHS Croydon CCG proposed the following:

“[To stop prescribing] Baby milks: soya-based infant formula milk, thickened infant formulas or formulas for lactose intolerance”

NHS Croydon CCG survey question asked was:

“How much do you agree that the local NHS should stop providing all prescribed soya, thickened or lactose-free baby milks and infant formula except for the exemptions outlined?”

Note the added phrase “and infant formula” in the survey question, which is all encompassing. No additional information was given to the public about the high cost of some of the infant formulas. The exemptions do not include Cows Milk Protein Allergy, and CMPA affected babies are listed as an impacted group. At their public engagement meeting used the following slide;

Slide from NHS Croydon CCG public meeting on Tuesday 13 ​December 2016​​​

When asked to clarify the Croydon CCGs decision taken by the governing body it has been indicated that EHF and AAF milks were believed to be in scope of their decision.

The engagement publications also provide estimates of how much the CCG is expecting to save by adopting the proposal. e.g. for Croydon it is £287,000 out of £395,000 they spend on specialist infant formula each year and Richmond CCG are proposing up to £386,000 of a £386,000 spend (100%!). Freedom of Information requests have been submitted to investigate whether these numbers are reached, but we suspect it would not be possible to make this level of saving without cutting EHF and  AAF milks.

While talking about costs, parents of CMPA babies have said they are willing to contribute/pay as they would for regular formula. This is not about getting ‘Free Milk’, it’s about getting a medical necessity.

Each CCG governing body will make its own decision, what happens in one does not mean it will definitely apply to another. Some CCGs are not looking at infant formula at all, and just gluten free foods or over the counter medicines.

One concern has been that the CCG consultations appear to be ‘cookie cutter’ facsimilies of one another with local costs and figures amended. So ambiguities and a lack of clarity are being copied with little improvement or learning from earlier consultations.

Richmond CCG engagement extract
Croydon CCG Engagement extract


Cambridgeshire and Peterborough ran a consultation in Early-Mid 2016. Final report (link) was thorough and made clear EHF & AAF milks excluded despite the original ambiguity. More recent reports have been less thorough and the ambiguity remains and uncertainty as to what the scope of decisions include.

Taken from: Consultation on a future model for Pharmacy Services in Cambridgeshire and Peterborough

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