On Tuesday 26th June, Liz led a debate in Westminster Hall on improving access to innovative treatments for PKU patients. We had a great turnout at the debate from both MPs and visitors. I was particularly pleased to welcome families and children affected by PKU to Westminster to hear today’s debate – especially my constituent Archie.
Liz has been working hard with APPG on PKU and the National Society for Phenylketonuria (NSPKU) to pressure the Government into making the drug Kuvan available in the UK. Kuvan is currently in the appraisal process, but with no end date in sight, many of those affected in the UK are disappointed with the handling of the drug’s appraisal process.
Liz will next be taking part in the MPs PKU Diet for a Day challenge, on Thursday 28th June, to raise awareness of PKU. MPs will be required to eat a diet that gives you no more than 10g of protein in one day. They will not be able to eat anything on the “Red list” – such as meat, fish, eggs or cheese. They will only be able to eat a very small amount of foods of the “Amber list” – potatoes, beans, cereals and dairy. Most of their diet will comprise of foods from the “Green list” – fruits and vegetables.
MPs have taken on the challenge to raise awareness of the dietary struggles of people with PKU. Much of the food they can eat is only available on prescription, so enjoying an ordinary diet is not possible. Many PKU patients would benefit from Kuvan, which is available throughout Europe.
Liz Twist, MP for Blaydon and Chair of the APPG on PKU, said, “This condition causes real misery for those people, including many children, who live with the protein deficiency. Their whole lives are dominated by it, with very little access to the treatments, such as the drug Kuvan they need.
“We’re taking part in Diet for a Day to raise awareness so that PKU is properly recognised.”
“I’m working closely with my constituents living with PKU and MPs from all sides, in calling on the Government to improve access to the much-needed treatment.”
Kate Learoyd, Campaign Manager for the NSPKU, said, “We are very proud of the work we do at the NSPKU, and are delighted that MPs on the APPG are now working with us to improve access to this important drug.”
Challenging events often reveal the very best in people. I would like to pay tribute to all those local heroes who have been clearing roads and digging out stranded cars, visiting older neighbours and delivering groceries to the housebound. Volunteers, good neighbours and public servants in our local councils, NHS and police have kept out communities going this week in the heavy snow. The Beast from the East is no match for the community spirit of the North East.
We’re known around the country as the friendly region of England and the Geordie welcome and sense of humour are unparalleled. But our region is also internationally recognised for our innovation, imagination and creativity. We have a long history of leading technological change. The North East makes claim to such inventions as Joseph Swan’s lightbulb, Stephenson’s Rocket locomotive, Walker’s friction matches and in more recent times Sir Jonathan Ive, the visionary behind the iPod, who trained as a designer at Northumbria University. We’re also home to so many award-winning artists, writers and musicians.
So, I’m delighted that this week, as we look ahead to warmer days, more has been revealed about the Great Exhibition of the North. For the first time ever, a great exhibition will bring the world to the North East and it is set to be the biggest event in England this year. The three-month celebration of the North of England’s pioneering spirit – our inventors, artists and designers – will demonstrate how our region has shaped the world and is building the economy of the future.
Over 80 days Gateshead and Newcastle will become the national showcase for dozens of amazing exhibits, live musical performances, displays of innovation, new artworks and magical experiences – and it will be free. Tourists can follow three walking trails around Tyneside towards The Baltic, Sage Gateshead and the Great North Museum. The BBC have also partnered up, so expect to see plenty of coverage of our beautiful region on the telly. This year will truly be one to remember as people “#GETNorth” for the celebrations.
On to another big beast from the North East – Red Ellen Wilkinson. Last week I was delighted to attend a talk about the pioneering Jarrow MP at the Brewery Tap in Dunston, the home of “Red Ellen” ale. In this centenary year, when we celebrate womens’ suffrage, there is much we can learn from Ellen Wilkinson.
As a Jarrow marcher, trade union organiser and later the Education Minister in the post-war Atlee government, she was instrumental in the fight for jobs, reducing working hours for hard-pressed industrial workers, increasing the school leavers age, introducing school milk and she was scorned by the Nazis for her opposition to their brutality. My good friend from North West Durham, Laura Pidcock MP joined me as we both shared our own experiences as women in Parliament and lessons we can learn from the fierce Labour MP known as “The Fiery Particle”.
We are celebrating another anniversary this year. Our angel has turned twenty. I am so proud that the Angel of the North keeps watch over my constituency. Many of you will have seen the interview with Sid Henderson, the former Gateshead Councillor who led the way, against much criticism, to build the angel in 1998. Sid reminded us of the challenge that Gateshead’s Labour councillors faced in convincing the public that the angel would bring tourism and prosperity and put the region on the world map.
Just along the road in Birtley is another great home of art. I visited the Thought Foundation earlier this month and was deeply impressed by this hidden gem. The arts centre and cafe is based on the values of human kindness and thoughtfulness. Their exhibitions exploring issues around Brexit and the environment are quite spectacular. With so much media attention on the plastic waste contaminating our oceans, I would thoroughly recommend a visit to see their installation highlighting the issue using thousands of disused plastic cups. There’s plenty to see, do and think about in this family friendly space.
Earlier today, Liz spoke in the Women Against State Pension Inequality debate in the House of Commons. Grahame Morris MP for Easington secured the very important debate and you can watch and read Liz’s contribution below.
“First, may I declare an interest as one of those 1950s-born women who are directly affected by changes to the state pension age? Unlike many—some are sitting in the Public Gallery—I am fortunate to be able to raise the issue in the Chamber. The fact is that many of these 1950s-born women have been hit not just once but twice by changes to the state pension age.
Those of us born in the 1950s were first hit by the equalisation of the state pension age to that of men, with transitional arrangements in place according to date of birth up to 2020. Sadly, the then Government did not see fit to tell the women affected about the change, so many remained unaware and looked forward to receiving their state pension at 60. As they approached 60, they were devastated to find the financial ground shifting beneath their feet. In 2011, the coalition Government sped up the changes, so the state pension age for women reached 65 by 2018, and would rise with an increase in the state pension age for men and women to 66 by April 2020. Many women were left completely unable to make up that financial gap, and that would have been the case even if they had been aware of the earlier changes, which many of them were not. It is ironic that measures that were designed to increase state pension equality should have such a discriminatory effect on women in particular. They have indeed had a discriminatory effect, as many 1950s-born women face real hardship.
Out of the thousands of women in my constituency, I wish to refer to two whose cases particularly struck me. Barbara, whose door I knocked on during the election campaign, had worked all her life; indeed, she was working until just before I knocked on her door. She had worked for British Home Stores, but following the collapse of that company, she found herself without a state pension and, in a classic double whammy, without a company pension at that stage. Then there was the woman who approached me, quite unsolicited, in Blaydon shopping centre who said, “We need to do something.” She said that she had retired early to look after her mum, thinking that she would get her state pension at 60, only to find, after her mum’s death, that she could not get her pension. She had to rely on benefits and family support, and that was after working most of her life.
These cases are not unique, so the issue will not go away. Many women still contact me to say that they have joined the WASPI campaign and registered cases for maladministration with the Department for Work and Pensions, leading to even more of a backlog with the independent complaints examiner who is considering this issue.
Where do we go from here? The Government must address the issue as a matter of urgency. I have no doubt that we will hear about the measures that the Government have put in place to help people into work or apprenticeships. That is absolutely fabulous for any woman who wants to work and is able to do so, but there are many women whose circumstances mean that they are not able to do so. They were not expecting these changes and they find themselves unable to work, having looked after parents or family. Frankly, in a competitive market, it is just not that easy for 1950s-born women to find work.”
Intervention from Mr Pat McFadden MP:
“Does my hon. Friend agree that whatever measures the Government might have taken, those measures have not worked and nor have they dealt with the problem? The continuing sense of injustice is still there, which is why we are having this debate.”
“Yes, I most certainly do agree. I am asking the Government to meet the WASPI campaigners, explore solutions, look at transitional state pension arrangements, and make resolving this issue a priority for the 3.8 million women affected. This is a campaign powered by women with determination and courage, and I commend all who are determined that this cause will be addressed.”