Fibrodysplasia Ossificans Progressiva
Debate between Will Quince and Liz Twist(1 year, 2 months ago)
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The Minister for Health and Secondary Care (Will Quince)
Let me start by thanking my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) for securing this important debate on FOP and for his powerful and compelling contribution. As he eloquently and articulately set out, FOP is an incredibly rare and truly devastating condition. He is a champion for people living with it and for their families, and I thank him for that. It is impossible not to be moved when reading about this currently incurable condition and when seeing pictures such as those he sent me about it. I am sure I speak for the whole House when I say that hearing about Lexi Robins and her parents, Alex and David, greatly moved me. I can only imagine what they must be going through, and I send my heartfelt sympathies to them and their entire family.
I also wish to express my admiration for Chris and Helen Bedford-Gay, who established the charity FOP Friends, after their son, Oliver, was sadly diagnosed in 2009. I understand from my right hon. Friend that they have raised more than £700,000 since then to fund research into treatment and to support families impacted by FOP. I am sure that many, many families are incredibly grateful for all their efforts.
At the outset, let me confirm that I am happy to join my right hon. Friend in meeting the Science Minister on this issue. We already work hand in glove on matters of research, and the House would expect nothing less. It would be remiss of me not to also welcome the hon. Member for Bristol South (Karin Smyth) to her place and to congratulate her on her promotion on the Front Bench. I also thank the hon. Member for Blaydon (Liz Twist) and my friend the hon. Member for Strangford (Jim Shannon) for their constructive and powerful contributions to this afternoon’s debate. I will endeavour, with your permission, Mr Deputy Speaker, to give as full and comprehensive a response as possible, given that I have far longer than any Minister usually has to respond to a Backbench Business Committee debate.
Let me kick off with a question asked by the hon. Member for Blaydon about the national genomic test directory. I scribbled those words down at pace as she was speaking. I will check and write to her specifically to confirm this, but my understanding is that FOP is a form of skeletal dysplasia, which is in the national genomic test directory. I will confirm that in writing once I have checked with officials on my return to the Department.
I want to assure the House and, of course, all families affected by rare diseases and conditions—I note my right hon. Friend’s point about FOP being a condition, but “condition and disease” is a phrase that the Department and clinicians often use—that we certainly recognise and understand the challenges they face. These diseases and conditions have wide-ranging impacts, not just on sufferers’ physical health, but on their mental health and on their involvement in the community, as he set out. That is why it is crucial that those affected by this condition receive the best possible care, from swift diagnosis to treatment, to improve their quality of life as diseases and conditions, sadly, progress.
To do that, it is vital that the UK harnesses our research prowess. Today’s debate has largely focused on the power of research and how it is often the key to unlocking so much. Our universities, scientific institutions and healthcare system very much lead the world in this space—we often say that we are world leading in lots of areas, but research is certainly one area where we are. They have enormous potential to develop solutions to improve the lives of people living with rare conditions, including FOP. Let me be clear that the Government are committed to funding this research.
In July, the Medical Research Council and the National Institute for Health and Care Research announced £14 million of investment to launch the UK rare diseases research platform. That is bringing together expertise from across the UK to foster new and innovative treatments for rare diseases and conditions, and to accelerate work to improve diagnosis. What is more, the Government are committed to funding groundbreaking research through nearly £790 million of new investment, again through the National Institute for Health and Care Research’s biomedical research centres. There are 20 centres, all of which research rare conditions and bring together academics and clinicians. Their role is to translate scientific breakthroughs into potential new treatments, diagnostics and technologies.
Liz Twist
I thank the Minister for his comments about the UK rare disease funding. It is very welcome, and I am particularly pleased to see that some of those centres are in Newcastle, in the north-east. That is really important, as I will discuss in my Adjournment debate later. Will he talk specifically about research into this condition, which is what the families will want to hear?
Will Quince
The hon. Lady pre-empts my next sentence, but let me give way to my right hon. Friend before I continue.
Will Quince
I thank my right hon. Friend for his intervention. Again, he has pre-empted what I was about to say next. I listened intently to his question to the Secretary of State during the statement earlier today, where he secured a meeting with the Minister of State for Science, Research and Innovation. Of course, I would be very happy to join him at that meeting. I share with him the view that if there is an opportunity for that research to be continued, we certainly do not want to see it start from scratch. At the moment, my understanding is that that research relates only to adults and my right hon. Friend, understandably and rightly, would like it to be extended to children.
Let me turn to the steps that the Government are taking to tackle rare diseases and conditions more broadly. In 2021, we published the UK rare diseases framework, which embodies our commitment to building a brighter future for people living with rare diseases and conditions. The framework identified four key priority areas: helping patients get a faster diagnosis; increasing awareness of rare diseases among healthcare professionals, which is something that my right hon. Friend is particularly passionate about; delivering more co-ordinated care; and, alongside that, improving access to specialist care, treatment and drugs. Since then, as was alluded to by the hon. Member for Inverclyde (Ronnie Cowan), all four nations of the United Kingdom have published rare disease action plans to suit their healthcare systems, and we very much work—and have to work—in collaboration on that.
In England, we published our second rare disease action plan on 28 February this year, which also marks International Rare Diseases Day. In that, we set out 13 new actions to drive improvements across the health system and we are committed to publishing action plans throughout the lifetime of the framework.
I touched on awareness of FOP and rare conditions and diseases more broadly, because my right hon. Friend rightly highlighted how a lack of awareness of FOP in the medical community can lead to under-diagnosis, missed diagnosis and, sadly, unnecessary examinations, which can exacerbate symptoms. That is why improving healthcare professionals’ awareness of rare diseases and conditions is central to the rare diseases framework. I am pleased to inform the House that we are making good progress in that regard. NHS England has developed GeNotes, which is an online resource that puts information about genetic diseases and conditions at the fingertips of healthcare professionals. I am pleased to tell the House that resources dedicated to FOP will be added to GeNotes. That will help more clinicians to diagnose this awful condition, and sufferers will receive the treatment that they need more quickly.
My right hon. Friend has raised newborn screening with me privately. The hon. Member for Bristol South (Karin Smyth) also raised newborn screening for FOP. They are both right that antenatal and newborn screening can be a vital tool in the early diagnosis of rare diseases. National screening programmes are implemented on the advice of the United Kingdom National Screening Committee, which makes independent evidence-based recommendations to Ministers in all four nations. While I understand that there are currently no plans for a national newborn screening programme specifically for FOP, I highlight that proposals for new conditions can be submitted to the National Screening Committee’s annual call for new topics.
Liz Twist
On newborn screening, is the Minister aware that there is concern among the rare disease community about the limits of our newborn screening process? This is something that we are speaking about at the moment. We think that there are options for it to be expanded in a positive way.
Will Quince
I have heard that from other charities, groups and organisations representing those with rare diseases and conditions. It is right that we respect the independence of the National Screening Committee, which puts forward to Ministers evidence-based decisions, but it is nevertheless important that we listen to organisations that are making valid cases. I am also concerned about the length of time that the National Screening Committee can take to make decisions, review evidence and present recommendations to Ministers. In our meeting, I will happily discuss that issue in greater depth and at greater length.
Let me once again thank my right hon. Friend the Member for Hemel Hempstead for securing today’s hugely important debate, and in particular for securing it on the Floor of the House. I express my heartfelt support for the entire FOP community: those living with the disease, their carers, their families, the clinicians and the charity FOP Friends, which works tirelessly to improve the lives of people affected by this devastating condition. I reiterate my thanks to all Members for shining a light on the condition this afternoon. I very much look forward to our meeting and to discussing this further. I genuinely believe that together we will continue to strive for progress and awareness, and support those living with FOP.
NHS Strikes
Debate between Will Quince and Liz Twist(1 year, 9 months ago)
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Will Quince
I thank the hon. Lady for her question, but nothing could be further from the truth. We accepted the independent pay review body’s recommendation of an average of 4.75% in full. That is over and above a 3% pay award last year, when the rest of the public sector saw a freeze. The hon. Lady, like me, will have lots of other public sector workers, and indeed private sector workers, in her constituency who will also earn between £30,000 and £50,000 a year. They will also have seen pay awards this year of between 4% and 6%, but they will not have 20% pension contributions or up to 33 days of annual leave a year. We have to keep these things in context, and any award also has to be fair to taxpayers more broadly, which is why we have an independent pay review body process. I want to address many of the issues that the hon. Lady has raised. We have that process; it is important that we use it, and I hope that the unions and others, including providers, will engage with it.
Liz Twist (Blaydon) (Lab)
Our NHS staff—all of them—saw us through the pandemic, many without proper protective equipment. They have now seen us through the catch-up exercise, and they are working hard, but they are at the end of their tether. Meanwhile, the Minister says there is no money, but the Government wasted £15 billion on personal protective equipment—money that could have given everyone a 20% pay rise. Is it not time that the Government understood the issues in this strike, got around the table and talked about pay to the nursing unions?
Will Quince
First, let me correct what the hon. Lady said about PPE. I was not a Health Minister at the time, but let us not forget that 97% of all PPE was usable. Despite being a Minister in another Department, I remember that those on the Opposition Front Bench rightly agitated on this issue, saying, “Do anything, strain every sinew and take a risk, but make sure you get PPE as quickly as possible.” It was the most desired global commodity, and Governments around the world were fighting for it.
Nevertheless, the hon. Lady raised a good point, and of course NHS staff got us through the pandemic. That is exactly why we accepted the independent pay review body recommendation in full. It is exactly why we accepted the recommendation last year of a 3% award when the wider public sector was frozen. Of course we value all those who work in our NHS, and that is exactly why have to get this right for the next independent pay review body. That is why we have to ensure that not just the Government but the unions, providers and others give evidence to that body.
Oral Answers to Questions
Debate between Will Quince and Liz Twist(3 years, 2 months ago)
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Will Quince
What I would say is that I am proud that this Government stepped forward at the beginning of the pandemic to put in place the largest cash increase in our welfare safety net to support people through an unprecedented period of economic shock and financial disruption, but as our economy opens up, we have record numbers of vacancies in our labour market—we know that work is the best route out of poverty—and it is absolutely right that we tack our approach to support and empower people into work and to progress in work.
Liz Twist (Blaydon) (Lab)
The Parliamentary Under-Secretary of State for Work and Pensions (Will Quince)
National statistics on the number and percentage of children in low-income households are published annually in the “Households below average income” publication. In 2019-20, 19% of children living in households where at least one adult is in employment were in relative poverty before housing costs.
Liz Twist
The Government are very keen to say that work is the route to escape from poverty. However, over 27% of children in my Blaydon constituency live in poverty and many of those are in families where at least one parent or more is in work. The £20 universal credit uplift removal will push working families deeper into poverty, so what will the Government do to tackle the crisis of in-work poverty?
Will Quince
We know—all evidence suggests—that full work dramatically reduces the risk of poverty. As our economy improves, we will increasingly focus on progression to improve opportunities for those in low-paid work and support them towards financial independence. But the hon. Lady is right, and I recognise that moving into work is not always enough to lift people out of poverty; that is why we have the independent in-work progression commission, which published its report over the summer on the barriers to progression for those on persistent low pay. It makes a number of recommendations for the Government that we will consider very carefully and respond to later in the year.
Oral Answers to Questions
Debate between Will Quince and Liz Twist(3 years, 4 months ago)
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Will Quince
I think I have covered this one. As our economy improves, we will increasingly focus our support and work on in-work progression to improve the opportunities for those who are in low-paid work and to support them towards financial independence. The in-work progression commission will report shortly on the barriers to progression for those in persistent low pay. Our plan for jobs—those extra 13,500 work coaches, kickstart, restart, job entry targeted support and the sector-based work academy programme—will make a difference, and of course we have the strategy coming out of the in-work progression commission.
Liz Twist (Blaydon) (Lab)