Part of 2. Questions to the Minister for Health and Social Services – in the Senedd at 2:32 pm on 12 February 2020.
Well, thank you for that, because that's actually quite a positive answer. I'm the current chair of the cross-party group on rare and orphan diseases here, and I was actually shocked when I met a whole group of people with PKU, because it's not just—. I think you termed it a 'pretty controlled regime'. Imagine spending your entire life living on soups and shakes, with the added disadvantage that, apparently, they taste disgusting. I was offered a sample; I did actually decline, because I could smell it before I even got anywhere near it. And it wasn't just that. These people were showing me, people with the condition, that, if they're going to eat a piece of cheese—literally, once a week, they can have a piece of cheese, which is about a centimetre by a centimetre by a centimetre. And, of course, this also has an enormous impact on their health and mental well-being as they grow older, particularly teenagers, young adults going out, having a social life, wanting to be part of normal society and just not being able to join in with the pint in the pub, the pizza down the local takeaway, or whatever it might be.
And the other really shocking thing that I found out was that, actually, from birth, the babies have to have specialised milk, and that milk is very often not on the NHS, it's eye-wateringly expensive, and, worst of all, it's incredibly hard to get. Now, Minister, if this is something that the lack of which would be detrimental to somebody's life and long-term well-being—. Will you please also ask your officials to look at this supply situation? Because to deny a baby the right food from the moment it's born all the way through its growing life, where parents are struggling to either afford the right milk, this synthetic milk that's made, or can't even get it—because you can't order it on Amazon or whatever—is truly shocking, because that young child will actually just develop these high levels of amino acids, and, of course, in the longer term, will need more and more help from the state. So, we need to keep them as healthy as possible. And there's also just something so unfair about having a perfectly lovely little baby and not being able to get the food it needs to have as good a life as it possibly can have.