When we started our campaign for better care for PKU in Parliament we really wanted to get across the real life issues that many people have with PKU.
Lots of people tell us that it is a struggle to get their children to have their amino acid supplements. Parents have all kind of strategies to ensure this essential task is done, but for many its a big burden on family life. These struggles continue into teenage and adult life, with some (not all) finding the protein substitutes embarrassing, stomach churning or just harsh to digest.
Just saying these words isn’t enough though, so we have always taken actual samples of amino acid supplements to Parliament and encourage them to sniff or sample them. We think this has always got across the message much more powerfully than anything we could have said. Its fair to say that they often make quite an impact! We use this as a starting point to say that its important for patients to have a choice of protein substitutes and that alternative non dietary treatments like Kuvan are important.
Similarly, you can tell people that the PKU diet is restrictive and complicated. But that’s easily misunderstood. So we also take in examples of how restrictive it is, with weighed examples of PKU exchanges, recipes books and PKU ingredients. And in 2018 we also got more than 20 MPs to try the PKU Diet for a Day Challenge. They were allowed 10 exchanges (which many of our members thought was very generous!).
The displays of prescription items also get across how important it is to have reliable access to prescribed products. We explain that this is often another difficulty of PKU life, with many people dealing with constant battles to get hold of the things they need.
We strongly feel that unless you understand the day to day realities of living with PKU you cannot really understand our challenges and why we are campaigning for change.