Phenylketonuria: Treatment and Support

Liz Saville Roberts Excerpts

Tuesday 26th June 2018 Westminster Hall

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I thank the hon. Member for Blaydon (Liz Twist) for securing this important debate and for her cogent argument. I am here on behalf of Mark Edwards of Llanegryn, Tywyn in Gwynedd. We have heard much about the impact on families and children, but the most effective thing I can do is talk about how Mark, as an adult, deals with this condition; how he manages from day to day; and what would make a difference to the quality of his life and the lives of others living with PKU.

Mark first contacted me about the sugar tax, which I had blithely thought to be a good thing. The sugar-sweetened drinks issue sums up how people with PKU struggle to strike the excruciatingly difficult balance between a medically essential specialist diet and fitting in with society’s rigid norms about food and drink.

Our social lives revolve around food and drink, from children’s tea parties to teenagers’ fast-food binges to adults’ restaurant dates. I have been told time and again how difficult it is for people with PKU to cope with the stigma of being “difficult” and “different”, especially over something as integral to our lives as food. If they cannot enjoy cake, jelly, burgers and chips, at least they can enjoy a fizzy drink—Irn-Bru or whatever the brand—like everyone else. Now, however, it costs more, because aspartame is on the red list. People with PKU are being taxed on one of the few social drink and food experiences that they are able to share with everybody else, simply because of their condition.

Mark is keen to stress how much he appreciates Wales’ policy on universal free prescriptions, which allows him to receive the special food and medical dietary supplements that he needs through Tywyn health centre’s dispensary, when he needs them and for free. That means that people with PKU in Wales have a much better arrangement, he said, than those in England. None the less, Mark still faces public prejudice towards his invisible condition. He has had to explain to people that he is not “freeloading on food”, as though it were a matter of lifestyle choice, and not medical necessity.

A number of us in this Chamber have committed to the PKU “diet for a day” on Thursday. A great number of people in Wales have also done so, and they deserve a shout out. They are: Alex Jones of Cambrian News; Janet Davis, the supervisor of Brighter Foods, where Mark works; school friends Carys Hughes and Nicci Hughes; and Tywyn solicitor Andre Bright, who has committed to keeping to the diet for a week. He deserves respect, even if a week is nothing compared to what the families face. I am only brave and organised enough to do it for a day; I apologise. We are doing this in solidarity with PKU families, but we also know that this in no way fully reflects or replicates the reality of their lives. Most of us will do this by being fussy and awkward—I anticipate living off aubergine for a day—but we are only doing it for one day. We will not face this fraught, potentially toxic relationship with food, and the stigma associated with it, every day of our lives.

PKU affects every aspect of one’s life. Controlling the condition by diet alone causes immense strain, and any possible medical intervention will make an immense difference to the quality of people’s lives. Wales is alert to England’s NICE guidelines, and I urge the Minister to do all he can to press NICE to move ahead, so that his Department can recommend Kuvan. I also urge that other drugs, such as Pegvaliase, be considered. I ask the Government to consider the health implications of the wider use of aspartame, which is associated with the sugar tax, and the way that it affects a number of other health conditions as well. Diolch yn fawr.