Phenylketonuria: Treatment and Support

Laurence Robertson Excerpts

Tuesday 26th June 2018 Westminster Hall

[Mr Laurence Robertson (in the Chair)]

Given the number of Members who will seek to catch my eye, I am imposing a four-minute time limit on Back-Bench speeches.

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House has considered access to treatment, support and innovative new medicines for phenylketonuria patients.

It is a pleasure to serve under your chairmanship in this important debate, Mr Robertson. It is just over 12 months since I was elected Member of Parliament for Blaydon, and only a few days less than that since I first heard of phenylketonuria—commonly known as PKU, which is easier to pronounce. One of my constituents, Barbara McGovern, had called at my office and spoken to a member of my staff about whether I would attend an event in Westminster on 28 June. Barbara’s son Archie has PKU, and she described his condition and some of the restrictions that he has to cope with every day. Her explanation of what PKU means, and her determination to get the best for her son, impressed my staff, who made sure that I attended the reception to learn more about the condition. Barbara and her husband David, and Archie, have travelled from the north-east to listen to the debate, and I welcome them.

Since that first encounter, I have been lucky enough to be introduced to the officers of the National Society for Phenylketonuria, and have had the chance to work with them and its other members to raise the profile of PKU, get people to understand it and its effects, and press for access to treatment and support. I will give a few of the many names that I could mention. Kate Learoyd and Caroline Graham both have children with PKU, and they have dedicated much of their time to talking to Members about the condition and the need for action for people who live with PKU. Professor Anita MacDonald OBE, of Birmingham Children’s Hospital, also does much to raise awareness of the condition and goes above and beyond in advising families affected by PKU on diet.

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[Chris Williamson (Derby North) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on securing this important debate. We have heard some heartrending accounts from hon. Members about the impact of PKU on their constituents.

My constituent, Denise Clayton, whose family I have known for 30 years, has lived with PKU for nearly 70 years, so she was born long before any real screening programme was in place. Consequently, she did not receive the required treatment, and the treatment she did receive was too little, too late to avoid neurotoxicity. Her family have done everything they could to support Denise. A few weeks ago, I spoke to her father, Norman, who recounted some of the traumas and difficulties that they experienced down the years. His view was that nothing could be done for Denise, but it seems that a treatment is now available.

I join hon. Members in their pleas with the Minister to use his good offices to ensure that the new life-changing drug Kuvan is made available so that the sufferers of PKU in the UK—like sufferers in other countries—can obtain the benefits of it and lead something approaching a normal life. Let us remember that we live in a wealthy nation; we are the sixth-biggest economy in the world.

PKU is a very rare condition that affects only a very few people in total across the country. The cost of the drug would be minimal in comparison to the life-changing impact it could bring about for young people—our fellow citizens. I plead with the Minister to listen to the impassioned pleas we have heard from Members today. He should use his good offices to ensure that the drug is made available so that we can change the lives of so many young people in our country who are suffering from this terrible condition.

[Mr Laurence Robertson (in the Chair)]

We now come to the wind-ups. I would like to leave two minutes for the mover of the motion to wind up at the end.

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[Liz Twist]

What can I say in less than one and a half minutes? I thank all hon. Members who have taken part today. I thank the hon. Members for East Renfrewshire (Paul Masterton), my hon. Friend the Member for Portsmouth South (Stephen Morgan), the hon. Member for Waveney (Peter Aldous), my hon. Friend the Member for Dudley North (Ian Austin), the hon. Members for Chelmsford (Vicky Ford), for Dwyfor Meirionnydd (Liz Saville Roberts) and for Strangford (Jim Shannon), my hon. Friends the Members for Warrington South (Faisal Rashid), for Hornsey and Wood Green (Catherine West) and for Derby North (Chris Williamson), the hon. Member for Linlithgow and East Falkirk (Martyn Day), my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson) and the Minister for his reply.

I am rather disappointed that we did not have a bit more promising news on the future of Kuvan, but we will be back; we will ensure that the Minister hears from us again, and we will continue our campaign. Finally, I thank all the families who are here today to show how strongly people feel about the issue. I thank everyone for attending. The issue will not go away. We will be back and will keep pushing this agenda.

Question put and agreed to.

Resolved,

That this House has considered access to treatment, support and innovative new medicines for phenylketonuria patients.

[Mr Laurence Robertson (in the Chair)]

Would hon. Members leaving please do so quietly? Thank you. We have another debate.