Phenylketonuria: Treatment and Support

Peter Aldous Excerpts

Tuesday 26th June 2018 Westminster Hall

[Peter Aldous (Waveney) (Con)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I congratulate the hon. Member for Blaydon (Liz Twist) on securing the debate and on championing so well the cause of PKU patients and their families and carers.

It is also appropriate to highlight the pioneering work of my hon. Friend the Member for Spelthorne (Kwasi Kwarteng). In an Adjournment debate on 1 December 2011, he highlighted his constituent’s problems in obtaining a Kuvan prescription. He successfully secured a prescription for his constituent, but it is most unfortunate, as we have heard, that six and a half years later we are no further forward in making this drug, which has the proven potential to change many people’s lives, more widely available.

Finley Walsh lives in Lowestoft with his parents, Michelle and David. He is two and a half years old and he was born with PKU—a genetic condition that will be with him for his whole life. All Finley’s foods have to be weighed, using a calculation that takes account of the amount of protein in the food. His parents have to take weekly heel-prick blood tests, which are sent to Addenbrooke’s hospital in Cambridge for analysis. The results are then sent to the Norfolk and Norwich Hospital, where dieticians phone through the results that enable Michelle and David to prepare Finley’s food intake for the coming week. That is a critical, delicate and often worrying process for them. It is vital to get Finley’s protein levels right; if they go too high, there is a real risk of brain damage.

The challenges that the family face daily are immense and place a real strain on them. Quite often, the blood test results do not come through on time and must be chased up. At present, they have had no feedback for two weeks. Food must be ordered on prescription to enhance Finley’s diet. Products such as those from Violife and Hooba are not only expensive but, quite often, not immediately and readily available. At present, there is also the worry that Finley was due to have a review with his specialist in May and that appointment has yet to take place.

Children with PKU suffer patchy care and support, which depends on where they live. That could be addressed by setting up specialised metabolic centres with an experienced metabolic physician and dietician. Psychological support should also be available in the centres to assist children if they experience learning difficulties and to ensure that they receive an education that enables them to realise their full potential. The centres could also administer prescriptions for PKU foods and dietary supplements so as to provide a more efficient service and to overcome the problems that the Walshes are experiencing.

On Thursday I, too, will take part in the PKU diet for a day challenge. In no way does that replicate the real experiences of people such as Finley, but I hope that together, we in this Chamber and around the House can highlight the need for modern treatments and better care for those who face such an enormous challenge daily.