Phenylketonuria: Treatment and Support

Debate between Liz Twist and Lord Austin of Dudley

Tuesday 26th June 2018 Westminster Hall

[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.

[Ian Austin (Dudley North) (Lab)]

I commend my hon. Friend on securing the debate and on her leadership of the all-party parliamentary group on phenylketonuria. There are lots of health-related campaigns for more resources, new treatments and drugs. Many have plenty of resources and are funded by major pharmaceutical companies, which hire expensive lobbyists and all the rest of it. The remarkable thing about Kate Learoyd and Caroline Graham is that they are parents of children with the condition, and their campaign is entirely voluntary. They have to fit it around their family and other commitments, which makes their work all the more remarkable.

British Sign Language: National Curriculum

Debate between Liz Twist and Lord Austin of Dudley

Monday 5th March 2018 Westminster Hall

[Ian Austin (in the Chair)]

I draw Members’ attention to the fact that today’s proceedings are being made accessible to people who are deaf or hearing-impaired. The interpreters are using British Sign Language, and Parliament TV is showing a live, simultaneous interpretation of the debate. I call Liz Twist to move the motion.

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House has considered e-petition 200000 relating to British Sign Language being part of the national curriculum.

It is an honour to serve under your chairmanship, Mr Austin. Last September, I had the pleasure of meeting Erin, a young woman involved in the National Deaf Children’s Society. Erin told me very clearly that many young people such as her who are deaf feel strongly that British Sign Language should be taught in schools, and that it should become a GCSE subject. As a result, more young people would be able to learn BSL, and it would be properly recognised as a language qualification, equal to other GCSEs. Erin’s determination, and her clear explanation of why BSL should be a GCSE subject made a lasting impression on me. When today’s petition, created by Wayne Barrow, who is in the Gallery, came before the Petitions Committee, I was keen to speak on it, and to introduce it on behalf of Wayne, the many other petitioners and Erin.

Other hon. Members on the Committee were very conscious that, although the petition had not reached 100,000 signatures, which is the usual threshold, the issue should be considered by the House, because it is difficult to ask for 100,000 signatures when fewer than 100,000 people speak BSL as their first language. The Committee was also very keen that the debate be signed, so that young deaf people, and the not so young, could follow the debate as it happened—a first for a live debate in this House. I hope it is the first of many, as Parliament reaches out and becomes more inclusive. I thank our signers, the Committee and the House staff who made it possible.

What a day to be holding this debate, after the British film, “The Silent Child”, won the Oscar for best live-action short film last night. Furthermore, the acceptance speech by actress Rachel Shenton was signed—another achievement, and another step forward.

--- Later in debate ---

[Liz Twist]

I thank all hon. Members who made contributions to the debate. Most of it was fairly upbeat. It is a shame about the ending, but I will come on to that.

I thank the hon. Member for Waveney (Peter Aldous) for his support for the cause. I also thank my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick), who chairs the all-party parliamentary group on deafness; my hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy); and my hon. Friend the Member for York Central (Rachael Maskell), who so powerfully reminded us that it is we who are erecting barriers, not people who have hearing difficulties or deafness, which is an important point to remember. I thank the hon. Member for Glasgow North West (Carol Monaghan) for her contribution and my hon. Friend the Member for Brent Central (Dawn Butler). Some really interesting and exciting points were made, all of them supporting the need for us to be more inclusive and to reach out and include young people with deafness, about whom we are talking today.

Then we come to the Minister’s comments. I have to say that I was really disappointed. I asked the Minister to go further than he had in his written response. I am disappointed that we have not been able to go further today. I heard all the reasons he gave, but we need a can-do approach. We have a problem and we need to find a way around it, so that all our young people can take part not only in school activities, but in life in the wider community, through the development of a BSL GCSE and the inclusion of BSL as a curriculum subject. I remain convinced, having been a governor in a number of schools, that it is really difficult to find time to teach BSL, although it is allowed. I look forward to his further discussions with the APPG.

I hope that there will be a change in the future to include BSL in the national curriculum and to recognise a GCSE qualification. I do not think that Wayne and his mates, Erin and other young people are going away. I think we will hear much more about this issue in the next few days. I am reminded that next week is Sign Language Week. I think there will be a lot going around among the Twitterati and the public about this, so watch out for a lot more questions from the public, as well as from hon. Members, on this issue.

To finish, I remind everyone that although we have spent a lot of time talking about the national curriculum and GCSEs, this is all about allowing deaf young people to be included in activities and school life, and to just have some fun, like Wayne and his mates do. I thank hon. Members and I am sure we will come back to this issue.

[Ian Austin (in the Chair)]

Before Members leave, I want to formally thank the interpreters who have been translating this debate into BSL, the people who have been organising the live simultaneous interpretation on television, and the Officers of the House who have made all of this possible.

Question put and agreed to.

Resolved,

That this House has considered e-petition 200000 relating to British Sign Language being part of the national curriculum.