Phenylketonuria: Treatment and Support

Debate between Neil Gray and Liz Twist

Tuesday 26th June 2018 Westminster Hall

[Liz Twist]

My hon. Friend is right, and I want to touch on that issue.

As well as having to have bread specially baked with prescribed flour, people with PKU can have no cheese, eggs or dairy products. Even some vegetables, such as cauliflower, are problematic, and so are potatoes, so there can be no chips or crisps. The daily intake of food needs to be monitored constantly. Imagine how that must be for a child at school who just wants to join in with classmates, or for young people who want to go out and socialise with friends—perhaps to go for a pizza, as my hon. Friend mentioned—and get on with their life. Everything must be measured and calculated to make sure that the appropriate level of protein for the child or adult with PKU is not exceeded.

Let us not forget that the condition is lifelong, and adults, too, must restrict their intake of protein. On top of all that I have described, both children and adults must take a protein supplement. I and other MPs have had the chance to try it, courtesy of our friends at the NSPKU, and it is not a pleasant experience. That puts additional pressure on parents, who often struggle to get their children to take the supplements, which they really need, three times a day. Making sure a child has the right diet, including when parents are not around to control it, and trying to make food interesting, often by starting from scratch with basic low-protein foods, is a minefield.

[Neil Gray (Airdrie and Shotts) (SNP)]

I congratulate the hon. Lady on securing the debate and on her work for the all-party group. A constituent shared with me some experiences similar to the ones that she has outlined. They are heartbreaking, and other Members who have constituents with PKU will share that feeling. Does the hon. Lady agree that alongside the medicinal treatments that might be available, it is important to raise awareness, through debates such as this one, and through Thursday’s “diet for a day”, in order to help provide and incentivise more support for parents who are supporting their children with PKU?

[Liz Twist]

I agree; it is important to look at the question in the round.

Many parents find that they need to give up work or reduce their hours to maintain their child’s diet and keep them healthy. At the end of last year, the NSPKU produced a booklet and video, “Patient Voices: Listening to the experience of people living with PKU”, which clearly and movingly sets out the practical and psychological impact of the condition on individuals.