Part of 2. Questions to the Minister for Health and Social Services – in the Senedd at 2:29 pm on 12 February 2020.
Diolch, Llywydd. Minister, phenylketonuria, which we'll call PKU because it's much easier, is a very rare genetic metabolic disorder that affects around one in 10,000 people in the UK. Patients living with PKU are not able to metabolise phenylalanine, which is an amino acid that's found in the proteins within your brain. And you're born with it, and, as soon as you are born, if you do not start to control those protein levels, it can lead to severe brain damage, thereby affecting the rest of your life. One of the ways that this disorder can be treated is by leading a very restricted diet. Now, the National Society for Phenylketonuria has come up with a number of recommendations to help improve PKU sufferers' lives, one of which is that all people with PKU should be followed up in an integrated, specialist, metabolic service led by an experienced physician and dietician. So, Minister, I wondered if you would give some consideration to adopting this recommendation, because, although the numbers are small, it does affect a significant group of people within Wales, and has long-term and absolutely devastating effects on their lives if they do not get the balance of this diet right.