Rare Diseases Strategy

Debate between Chi Onwurah and Ben Howlett

Tuesday 28th March 2017 Westminster Hall

[Ben Howlett]

I am sure that the Minister heard that and will pass it on to the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon.

We also saw evidence of poor communication between the organisations responsible for implementing individual commitments and other stakeholders involved in the strategy. What plans does the Minister have to better co-ordinate that communication? Many patients do not have access to the appropriate treatment or information about their condition, and the barriers to accessing information about a condition begin as soon as a diagnosis is made. Unfortunately, that leads to patient care continuing to be poorly co-ordinated.

I know that the Minister is a superb champion for those with rare diseases, and given the rare condition that the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon, has, I hope that he provides more information about the Government’s commitment from last week. Hopefully they can commit to the Department of Health developing a comprehensive implementation plan that describes actions for its arm’s length bodies in particular. An implementation plan would offer direction to bodies involved in rare disease patients’ care, so that they can take action to improve the services that patients need. It would help patients to understand what progress is being made and to ask the right questions when it is not. It would also help to ensure that the needs of rare disease patients and their families are considered in decisions about patient care and access to treatments taken by bodies involved in the strategy.

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

I congratulate the hon. Gentleman on securing this important debate. I welcome the recommendations in the strategy, although I am concerned that the recent announcement on capping NHS drug prices will influence implementation. Muscular Dystrophy UK has said that it would have a major impact on drugs for muscular dystrophy and other rare diseases. Newcastle is fortunate enough to be home to the John Walton Muscular Dystrophy Research Centre, but support could be improved further by providing specialist psychological support for people with muscle-wasting conditions. Does the hon. Gentleman agree that such support needs to be an integrated part of service provision for muscular dystrophy and other rare diseases?

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[Ben Howlett]

I thank the hon. Gentleman for his intervention and pay tribute to him for his work on rare diseases over the years. One of the first events I ever went to in Parliament was on rare diseases and was hosted by him. I could not have put it better myself. I will come later to my view that the issue needs to be thought about in a more timely way, potentially in a consultation and through some sort of implementation plan, which has been missing. It will impact not just people with muscular dystrophy, for example, but all those with the different conditions that he has championed in the past.

The four medicines evaluated to date have shown tremendous benefits to patients, and are life-saving and life-extending treatments. They are some of the most powerful and effective treatments for rare diseases ever seen, and the highly specialised technology evaluation committee recommended them for funding in England, but none of those life-changing medicines would have been able to raise the lower threshold significantly, and none would have been approved under the new regime.

If implemented, the plans will significantly affect patients with rare diseases and their ability to access life-changing treatment, at a time when we should be expanding access routes rather than limiting them further. The changes contradict the positive recommendations made in the accelerated access review and will restrict any attempt through the industrial strategy to position the UK as a centre for the development of innovative medicine. England already has extremely slow and limited access to treatments for rare genetic conditions; further narrowing of access routes will shut the door to innovation for our community of patients and families. It is unacceptable to implement such drastically damaging proposals just 18 days after they were announced. I therefore join the sector in calling for a pause in implementing the proposals and for a consultation and impact assessment.

[Chi Onwurah]

I thank the hon. Gentleman for his kindness in giving way once again. The John Walton Muscular Dystrophy Research Centre was named after a peer, now sadly deceased, who also founded Muscular Dystrophy UK and saw over a long lifetime the importance of the UK’s role in innovative science and research techniques, and its economic benefits to the research sector and, more widely, our international reputation. The changes proposed to NHS England will do much to undermine that.

[Ben Howlett]

I think the sector agrees on that point, from patient groups to the constituents whom the hon. Lady represents, as well as all the people with an undiagnosed condition who might access the services of that facility in future and many others throughout the country. The Government need to rethink the implementation and ultimately introduce an impact assessment on that basis.

I know that several hon. Members want to speak, so I will conclude by welcoming the commitment and dedication of this Minister and the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon, in providing a solution to our long-standing problems with the implementation of the rare diseases strategy in England. Following the publication of our report, I hope that the Minister will be able to provide clarity on the questions that I have asked. The UK is doing superb work and leading internationally on rare diseases.

STEM Careers: Diversity

Debate between Chi Onwurah and Ben Howlett

Tuesday 19th January 2016 Westminster Hall

[Ben Howlett]

(Bath) (Con): I beg to move,

That this House has considered increasing diversity in STEM careers.

Thank you, Mr Hollobone—my new style consultant, apparently. It is a pleasure to serve under your chairmanship.

Put simply, the science, technology, engineering and mathematics sector is largely dominated by white men and much more needs to be done to create a diverse and more balanced sector. I am sure that I do not need to explain to anyone why a more balanced sector will be beneficial to our economy and productivity, and to creating a much more equal society. I will therefore spend most of my time today discussing the lack of female representation in the sector, as well as the need to make it more appealing to the black, Asian and minority ethnic community, as well as disabled individuals.

As a man and as a member of the Women and Equalities Committee, I must say that it is an absolute privilege to be leading this debate, as I believe strongly that it is not just a woman’s job to end up championing diversity in the sector; rather, it is for all of us to do so. I first got interested in this subject quite a while ago, but I saw a stark example of the problem last year, when I attended a school—which shall remain nameless—in my constituency to see an IT development class. There was a single woman in that class and a sea of men. To be frank, that is appalling in 21st-century Britain and we should be doing an awful lot more to change that.

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

I congratulate the hon. Gentleman on leading this very important debate. As someone who still is a chartered engineer, and who worked as an engineer across the world for 20 years before coming to this House, may I say how pleased I am to hear him say that this is the responsibility of everyone, including white men? Having men who talk about the importance of diversity—and not simply when they are being asked about it by women—and who raise it in the boardroom constantly is an important part of changing the culture. We need both men and women to speak up for it.

[Ben Howlett]

I thank the hon. Lady for her contribution. I completely agree that it is the job of men and women to be championing this issue. Black, white, BME—from whichever sector of the community, it is important that we get that voice out there. I pay tribute to her for her work on championing this area, and particularly diversity in STEM, given her background. I have heard an awful lot from her over the last few months and I look forward to working with her on that in future.

Before I came here today, I was pleased to lead a digital debate on Twitter, alongside the House of Commons engagement team, using the hashtag #WomenInSTEM. As well as trending at No. 1 in the UK—it was the first time I have been involved in something like that that has been as successful, which was quite exciting—the debate was really insightful, with a huge number of ideas, which I will hopefully be able to reference today, although I cannot reference every single one of them. There were over 800 tweets altogether, and I will try my best to summarise as many as possible. I want to thank the hundreds, if not thousands, of people who took part in the debate—I hope many of them will be watching today’s debate—which shows that Parliament can really speak up for people out there who do not necessarily have a voice. I am sure that the hashtag #WomenInSTEM can be used throughout today’s debate as well. Sometimes Parliament can be seen as distant from people’s everyday lives. Looking at the debate yesterday online, I hope that we were able to show that this place was and is listening, and is working to improve the everyday lives of hard-working people.

There are some truly shocking figures that show the lack of diversity in STEM. For example, in 2012, a survey of girls between the ages of seven and 21 found that the top three careers they would choose for themselves were teacher, hairdresser and beautician. As I am sure we can all agree, these are often seen as “traditional” female roles. We need to ask ourselves why engineer, physicist, chemist and mechanic are not mentioned in that list. When it comes to engineering, only 3% of engineering degree applicants are girls and just 6% of the UK engineering workforce are female. Physics is the third most popular A-level for boys, but only the 19th for girls, and around half of all state schools in the UK have no girls studying physics A-level at all.

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[Ben Howlett]

I completely agree with my hon. Friend. It seems outrageous to me, or at least incredibly strange, that the understanding that a woman can be as productive as, or more productive than, a man is not part of the mindset of many businesses in the sector. The skill sets that should be created to help to grow the economies that are important to us—the tech economy, in particular—are simply not being built. We need to be generating a whole new pool of talent, which can, obviously, come from women. There is no reason why it cannot; there simply seems to be a culture out there that prevents women from being able to access the sector.

[Chi Onwurah]

The hon. Gentleman is being very generous in giving way. Part of the culture that he has just mentioned may well be the idea that science and engineering are somehow separate from arts and creativity, and that people must choose between the two. The great thing about engineering and science careers is that the best and the most productive involve creativity and imagination, which are the sorts of skills that we need for our future.

[Ben Howlett]

I completely agree with the hon. Lady. There is no difference between the two. Some of the most creative women I have met work in professions in the tech economy, and I do not know why the separation that she mentioned exists. The application of a particular type of STEM, whether it is science, technology, engineering or maths, seems to be missed in the wider debate. Women would be much better able to access the sector if they knew that science or technology would help them in their future careers and that they would be accessing a very creative sector.

Once women have chosen a career in STEM, we must work to make sure the sector retains them. I was saddened to learn of a former constituent of mine, one of Bath’s only female IT developers—given the fact that we have a huge tech economy, I find it absurd that we had literally one IT developer who was a woman—who needed flexible working and found that her only option was to move to London. Sadly, we have lost her now. The tech economy in the west of England, and elsewhere in the UK, should learn from that, understand the reasons why it happened and encourage more women to access the sector. I hope that example will shift the mindset of many employers.

It should not be difficult to allow women to work flexibly and pursue a career in STEM. I am not saying that every company that contributes to the STEM sector is not flexible or accommodating of women with families, but a sizeable number are not. All sectors need to step into the 21st century and be flexible. The STEM sector is no different, and I hope that the Department for Business, Innovation and Skills will work to encourage that.

I did say that I would touch on the importance of extending STEM to be more inclusive of the BAME community and disabled people. Just as we need to work to break down barriers for women, we need to break down any barriers that exist for the BAME community, and even more so for women BAME community members. There is much information available about female uptake of STEM, but for some reason far less when it comes to the BAME community. To create an appropriate strategy to combat any issues, we need to monitor the uptake of subjects and careers, and highlight trends, which policy can work to mitigate. We need to focus much more on workplace adjustments in STEM careers to help disabled people to access roles and further their careers in the sector.

I am pleased to say that there are success stories, which we need to hold high and use as models to improve the diversity of STEM in the future. Athena SWAN, as I am sure many Members are aware, is a national scheme that recognises a commitment to supporting and advancing women’s careers in STEM within higher education and research. Members across the country sign up to its charter, which contains principles such as

“To address gender inequalities requires commitment and action from everyone, at all levels of the organisation”,

and

“The high loss rate of women in science is an urgent concern which the organisation will address”,

to name but two. Athena SWAN grants awards to organisations for good practice in recruiting, retaining and promoting women in higher education. Universities proudly display their certificates, which no doubt help when they are competing to attract the best staff and students.

In the last Parliament, my hon. Friend the Member for Truro and Falmouth (Sarah Newton) was a strong champion in this area, and I pay tribute to her for her work on increasing diversity. I direct the Minister’s attention to the excellent report published by the Select Committee on Science and Technology during the last Parliament, which included a range of recommendations to improve diversity in STEM. Other sectors need to look at Athena SWAN and bring in similar charters to ensure that they are doing all that they can to put increasing and maintaining a diverse workforce at the centre of their work.

I am pleased to see that the Government have committed to addressing the lack of diversity in STEM, and I would like to suggest, as I am sure other colleagues will too, ways in which we could start to de-gender STEM careers and ensure that the sector is as attractive to young girls as it is to young boys.