I’ve just read a disturbing story. Croydon commissioning group plan to charge parents for formula milk previously prescription only for babies that are allergic to milk.
This scares me, really scares me. As an ‘allergy mum’ I know the struggles of parents of children who have one or more allergies. The worry, the fear, the ‘will my baby be ok with this food’ and the complete stress of parenting a child with an allergy or allergies that parents without don’t experience.
Ok, back to the beginning. My baby was diagnosed CMPA at 12 weeks old after weeks of eczema, diarrhoea, colic, sick everywhere all the time and up multiple times a night. It later emerged she was allergic to eggs, nuts, soya and now coconut. She was prescribed aptamil pepti, but reacted. Eventually we worked up to neocate apparently at £45 a tin. I breastfed, I wanted to but it restricted my diet so severely I could barely go out and eat, I was stressed worrying about poisoning my daughter or causing her pain. I lost a huge amount of weight, and am still paying the price now.
Weaning was a nightmare, avoiding all known allergens, slowly introducing foods and worrying every day, analysing every nappy and growl and whimper and thinking ‘was it the breakfast or tea or lunch three days ago. Even now, we can’t go out and eat ever. It’s never as simple as ‘let’s pop out for lunch’, we just can’t. I have to either check there’s somewhere to eat, or pre pack and lug around food for the day. She can’t make her own choices, they’re so restricted to what is available and as a parent it breaks my heart seeing her upset because she can’t she can’t share mummy’s food, or is hungry and we can’t find anything for her. The day she came home from nursery crying ‘cake’ and we worked out there had been a birthday and she’d had fruit cocktail for pudding. I think I cried too.
This is the allergy struggle and I’m fed up of it as a lucky one. One of the parents who doesn’t have a child who reacts with anaphylaxis, the life threatening consequence of allergy.
I breastfed, but I had to return to work so needed formula for nursery as my job and I just didn’t have time to express. You can hit me with all the legislation about expressing, it just wouldn’t have worked in my situation. In total I probably had about ten tins, so £450 worth. If I hadn’t breastfed, try quadrupling that, and more.
The plans to charge for formula, what is this gaining? I would happily have paid the equivalent of normal formula prices; in fact I stubbornly breastfed longer than perhaps worked for us (daddy worked away, I worked full time with a severely restricted diet and all the worry) because I didn’t want so much formula. Again, a lucky one as we diagnosed all her reactions. Not every parent or mum can breastfeed, regardless of allergies so why force mums of children with allergies to breastfeed and not give them the option of formula because they’re priced out? The risk is that babies will be given sub-nutritious milk, or normal formula because parents can’t, or honestly won’t afford allergy friendly formula. Surely the flip side is these babies will become malnourished, if not now then in years when the health problems begin to show and cost more than a year or so’s worth of formula.
Charge a prescription charge and remove unnecessary prescriptions from repeats. Invest money into community services and free up hospital beds. Families, take responsibility for your elderly relatives. Why not stop prescribing calpol for children which a cold? I’ve been offered it several times, always refused. Will the next step be insulin for diabetic children?
Don’t, don’t force parents to pay for formula that is necessary for their babies.