CROYDON COMMENTARY: Earlier this year, a mother wrote of the hardships and difficulties of bringing up babies with allergies which made them dependent on being fed formula milk which is being withdrawn by the NHS in Croydon to save a few bob. Now, the NHS is trying to claim that such essential baby food is ‘self-medicating’. KIRSTIE SMITH updates on the latest developments

The NHS is in crisis.

There is no question about that.  Anyone who watched the recent BBC programme Hospital will realise just how bad the crisis is; with cancelled operations, lack of beds and services under more pressure than ever.

The government tells us that money needs to be saved, but how and where? Who decides which services come under the knife? For our borough, it’s Croydon Clinical Commission Group who wield the scalpel. While disappointing, it didn’t come as much of a surprise when the recent petition requesting that prescriptions for baby milk are not stopped in Croydon drew a response to the effect that there was nothing they could do.

Croydon CCG consulted on prescribing changes between November and January. They say that they engaged face-to-face with more than 300 Croydon residents, patients and professionals at 30 events, groups or locations. They received 346 written responses through the online and paper survey.

That’s a drop in the ocean for a borough with a population of 381,000, and rising.

The petition was started following the CCG’s approval of recommendations to stop the prescribing of gluten-free products, vitamin D for maintenance, self-care medications and baby milk.

Dr Tony Brzezicki, the CCG’s clinical chair, said at the time: “As we heard during the engagement period, we share the public’s concerns and want to do what we can to prevent these changes impacting on the most vulnerable in our communities. We are committed to working with local health professionals, community groups and the public to make sure everyone has access to good information to help them find appropriate alternatives to meet their needs.

Dr Anthony Brzezicki: talks of ‘options’

“We are working closely with pharmacists, GPs, dieticians and paediatricians to look at the issues that may arise from stopping prescribing baby milk, in particular, the high cost for products for parents and carers of babies with a cow’s milk allergy who may need Neocate or Nutramigen. Baby milk thickeners, soya and lactose-free products are either of a similar cost to regular formula, and so would present less of an issue of cost for local people, or may no longer be clinically appropriate. We need to make sure everyone currently being prescribed these products are well-informed about what is best for their babies and what options are open to them in the future.”

There are some specialised baby milks that are available “off the shelf”, for similar costs to regular formula. These include thickened formulas to treat gastro-oesophageal reflux disease (GORD). There is no reason why the NHS should continue to prescribe these.

But for those babies with cow’s milk protein allergy (CMPA), requiring extensively hydrolysed formula (EHFs) or amino acid formula (AAF), the costs are less than affordable. When I bought an AAF in 2015, it was £46 for a 400g tin – that’s half the size of a tin of regular formula. I’m not saying these formulae should be free, but parents shouldn’t have to get into debt to feed their child their only source of nutrition and something that is clinically required.

I’d like to see a system where parents pay the price of regular formula and the NHS tops up the rest – a subsidy system which would still save the NHS money. Apparently, this goes against the ethos of the NHS. Cutting off a baby’s food supply, however, does not.

Rachel Flowers: raised equalities issues with the CCG

Rachel Flowers, Croydon Council’s director of public health, had, at least, challenged the CCG to consider equalities policy in prescribing and said that if the recommendations were agreed there would need to be clinical exceptions to mitigate health implications in areas of child poverty (CCG draft minutes – January 17 2017).

But what of those who are not on the poverty line? Those parents who work, who do not get any benefits? With some specialised baby formula costing in excess of £40 per tin, they could be looking at a cost of over £100 per week.  Clarity on prescribing is imperative.

The Department of Health’s response to the petition was that it’s the CCG’s decision and that, “The CCG advises that the response to the prescribing proposals was predominantly positive, with over 70 per cent of respondents agreeing that the CCG should stop providing self-care medications.”

But, as the blogger Dairy Free Baby and Me points out, the CCG’s report actually states that 49 per cent of respondents agreed or strongly agreed that the CCG should stop prescribing specialist formula baby milk, while 34 per cent of respondents disagreed or strongly disagreed that the CCG should stop prescribing specialist formula baby milk.

Besides, the CCG’s consultation was flawed. It was flawed in a number of ways, including having imprecise questions: in this case, they had an “and” between self-medication and specialised baby formula. The two things are different.

In all honesty, I didn’t expect any other response from the government. But I am incensed that they consider baby milk “self-care medication”.

Prescribed baby milk is not “self-care medication”. For babies with allergies, whose mothers cannot breastfeed (and cannot is the important word here), it is their only source of nutrition. Babies do not choose to have allergies, it is not a conscious choice to enhance their health by ditching the cow, but this is a matter of pure survival.

The government really is targeting the most vulnerable.

But self-care medication? That’s an interesting and good point. Surely the Croydon CCG can save much more? Weight-loss surgery, boob jobs (or fixing botched private or health tourism surgery), methadone – they can all go for a start. You need insulin? Woah, that’s self-care, not the government’s problem. Where does it stop?  Need heart surgery? Have you ever smoked? Eaten fatty food? Not exercised enough? Then you’re not the government’s problem. Toddle on and self-medicate.

In my humble opinion, medication such as paracetamol and ibuprofen can be considered self-care medication. Yet, I have been offered these on prescription many a time, when a packet of 16 paracetamol tablets can be bought in Boots for 49p – or even less in supermarkets. Even children’s paracetamol suspension can be bought in the Poundshop for, well… £1. Parents and carers need to take responsibility and just because something can be available on prescription, and potentially free to those with prescription exemptions, it doesn’t mean it’s an entitlement and should be on prescription.

If the NHS is to stop prescribing formula milk for babies with allergies, where is it going to draw the line?

But if, as the government suggests, specialised baby milk is self-medication (it’s not), this then raises a further question: should parents really be self-medicating babies?

Is it OK for parents to self-diagnose via Dr Google or, in the first instance, should they trust someone who has a degree in medicine, is recognised by the General Medical Council, has completed a two-year foundation course of general training as well as specialist training in general practice? Or even a paediatrician who has further, specialised training?

The CCG is still being very unclear on what will be prescribed and what will not. This may be because they aren’t sure themselves, don’t understand the implications – their own consultation document gave incorrect information about the availability of specialised milk – or they may have realised their engagement wasn’t engaging at all and this is a bigger issue than they perceived.

Croydon is part of South West London Collaborative Commissioning, along with five neighbouring boroughs: Wandsworth, Richmond, Kingston, Merton and Sutton.  In their Commission Intentions – two-year view, 2017-2018 and 2018-2019, they state under Clinical Value that they will be “decommissioning, reducing provision, review of thresholds for services, following engagement, that are evidenced to have limited clinical value and effectiveness e.g. Fertility and IVF services and prescribing related areas”.

“Limited clinical value“. Hmmm.

There will be cases where specialised formula milk has been over-prescribed and perhaps a higher value formula is tried before a formula costing less. But when did babies’ food and nutrition become of “limited clinical value”?

This issue is not specific to Croydon. Richmond has also consulted on the same and my money would be on Wandsworth, Kingston, Merton and Sutton following suit. That’s just for starters. Once this ball starts rolling, it’s going to be hard to stop and parents will find the chase exhausting. They don’t need that on top of the inevitable sleepless nights.

The Campaign for Milk Prescription Access is advocating for the continued prescription of specialist infant formulas for babies with Cow’s Milk Protein Allergy, or CMPA.  But parents need to make some noise. Some have already been told they will have to pay come April. If you are affected, please contact the Campaign who will challenge this for you.

To make your voice heard, sign the petition.  If it can reach the 100,000 mark it will be debated in Parliament. Chris Philp, the MP for Croydon South, is already behind the campaign, as his own children required specialised formula so he understands the struggle. I sincerely hope he sticks to his decision to raise this issue in Parliament if the decision is not reconsidered.

There is absolutely no doubt that the NHS is in crisis. Something needs to give. But baby milk? Is this really the right thing to target?  I don’t believe so.

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