#pkuproblems

Something has been bugging me for a long time now and I felt the need to rant about it on here because why not?! And more importantly I feel that it may also concern some of you guys too…

So since I turned 19, and I’m now definitely being classed as an adult (even if I don’t really feel like one yet!), I have discovered that I must pay for my prescriptions. This came as a bit of a surprise to me as I’m still in education and so I assumed that the rule was if you were you would not have to worry about this yet. However, I was wrong. I have been told that I must now pay for all of my low- protein foods that I order on prescription, as well as the lancets that I need in order to do my bloods.

Now, at the time when I first discovered this, I was actually still on my diet. A typical prescription order for me would’ve included; several boxes of pasta, a few tubes of the ducal powder, several packets of the Fate all- purpose mix (to make my bread with), a box of spaghetti and a batch of the Pro- zeros. Obviously I would also have several boxes of my supplement on top of this. As I wasn’t following a completely strict diet at the time, I didn’t need tonnes and tonnes of low- protein food, which was a good thing I guess. But it still would have been rather costly! A box of low- protein pasta on prescription would cost around £8, which I think is an extremely unfair amount considering a packet of regular pasta in a supermarket costs just under £1.

I was aware that I could have just paid for a yearly prescription if I’d liked, which would’ve meant I could’ve ordered as much as I liked for the year for a certain amount of money. But I decided that personally it would’ve not been worth it, as I would only need to order foods every few months or so; in the long run I probably wouldn’t have gotten my money’s worth.

Considering all of this, it was at this point that I decided to move away from my diet (although not completely, as I would still need my supplements), and begin eating ‘normal foods’. I began to include usual bread, milk and pasta in my diet rather than the low- protein ones. However, I understand that I’m extremely lucky enough that I was able to do this. I am aware that probably for many of you guys this wouldn’t be an option at all. If you follow a strict diet, then you will depend daily on most, if not all of the low- protein foods on prescription. This is where it angers me most. We obviously didn’t choose to have PKU, we were born with it. And so what are we supposed to do about this? Perhaps paying for a yearly prescription will be worthwhile for many of you, which is great news, but there is still the principle of this that frustrates me. In my opinion people such as us, with PKU, shouldn’t have to pay for any of their foods, as they are important dietary requirements not things that we would choose to eat if we had the choice.

I think a while back, the last time I attended the annual PKU conference around 2014, I heard something about the need to make low- protein foods available in supermarkets. Although there is the question of which would be cheaper – buying on prescription or in the supermarket? But I do honestly think this is such a wonderful idea and I hope in the future this is something that can happen. Many people are not even aware of PKU, but it’s something that should be known of. And so I think this would also contribute to raising awareness of our condition.