Fibrodysplasia Ossificans Progressiva

Debate between Will Quince and Mike Penning

Thursday 7th September 2023 Commons Chamber

[Will Quince]

The hon. Lady pre-empts my next sentence, but let me give way to my right hon. Friend before I continue.

[Sir Mike Penning]

I will await the next sentence with interest. I have been to Oxford and met many of the scientists who are carrying out the research, but bidding for this sort of funding is enormously complicated. It takes forever and a day to fill in the bids—a lot of time, and time is money for a scientific facility—and will not help with FOP because it does not fit into the categories that the Minister refers to. It is so rare that we have to bid for funding across Europe or with the Americans. Is there any way that we could simplify the process, so that researchers could know earlier whether they have a chance of getting the funding or if they are wasting their time?

--- Later in debate ---

[Sir Mike Penning]

This is a learning process for all of us, and it is not just about FOP. As I understand it, Horizon asks for bids on certain aspects. A bidder can only bid if they fit into those criteria and then they have to wait for up to two years to run the project. The FOP project had to stop because of covid. To start all over again would be very difficult. I wonder whether the Minister will join me in that meeting to see whether we can slot into the process, rather than start all over again.

[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.

Accountability in the NHS

Debate between Will Quince and Mike Penning

Wednesday 30th November 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Will Quince)]

It is a pleasure to serve under your chairmanship, Sir George. I congratulate my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) on bringing this important debate to the House today. I know from our numerous conversations over the years that he is a tireless champion of healthcare provision, not just within his own constituency, and an advocate for instilling accountability and a learning culture throughout the NHS as a whole. Today, he has raised some difficult cases, albeit anonymised. I know the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Lewes (Maria Caulfield), who is responsible for patient safety, looks forward to receiving more information and will be happy to meet our right hon. Friend to discuss the cases further.

I assure my right hon. Friend that this Government share his commitment to ensuring that the NHS delivers excellent care to all of its patients. We will never tire in striving to ensure that patient safety and high-quality care are at the heart of all patient care in our country. I am of the firm view that accountability for excellence applies at all levels of patient care, from the individual clinician caring for an individual patient through to Parliament’s role, as my right hon. Friend set out, in ensuring accountability for healthcare delivery by the NHS. It is essential that the commitment to excellence is central.

My right hon. Friend rightly says that we love our NHS. Of course we do. However, we recognise that on rare occasions—not as rare as I would like—patient care falls short of the very high standards that we expect. He talked about getting answers for his constituents as a Member of Parliament. That is hugely important. I apologise that ministerial responses have not been as full as he hoped they would be. I will certainly look into that, because those responses are important. As a constituency MP, I too have cases from constituents who have raised concerns, either about their GP or their acute trust, and the level of service provided.

My right hon. Friend rightly raises questions about why the NHS as an organisation does not more often simply say “sorry” when things go wrong. It is, as he sayd, a human business and things do go wrong.

I hear what he said about ministerial responses. He is also right to say that Ministers are unable at present to respond to individual cases. There are reasons for that. As the hon. Member for St Albans (Daisy Cooper) and the hon. Member for Westmorland and Lonsdale (Tim Farron) said, the NHS is a complex organisation. We have NHS England, integrated care boards, integrated care systems, primary care networks, acute trusts, mental health trusts and ambulance trusts, and there is a question about whether Ministers or bodies such as NHS England and individual trusts should hold a level of operational accountability or delivery responsibility. That is a fair question, raised by the hon. Member for Westmorland and Lonsdale, but it is a tricky balance to reach.

Ultimately, who is responsible for any failings within the NHS? Well, that is me. Who is responsible for delivery of services through the NHS? Not me. That position presents some challenges. Ministers have the ability to set the strategy at national level, but there is a big difference between the strategy, the approach, the culture and the leadership set in Whitehall and what actually happens at grassroots level at individual trusts. However, although I do not have direct operational responsibility, trust me when I say that every single day I am thinking about every single case where an ambulance is delayed and people have to wait too long; about all the 7.1 million people in our elective backlog, and about all those who do not get the excellent care that they rightly deserve and expect through our NHS. That is because I am the one who is responsible for that. I get the letters, and sometimes the responses are not as full as we would want, because I do not have at my fingertips all the information I need to be able to respond in the way I would like. We need to look at that.

My right hon. Friend rightly says that most people do not want to sue or take legal action against our NHS. They are desperately sad about what has happened, and they may be disappointed or even angry, but that does not mean that they want to seek financial redress or sue a hospital trust. They know the implications of that—the money comes out of operational budgets.

Having been the responsible Minister, I am acutely aware that we have an annual clinical negligence bill of £2.6 billion, which is huge. Understandably, I would rather spend that £2.6 billion on NHS frontline services. I have huge sympathy with my right hon. Friend’s view that we should collectively put our hands up, explain what went wrong and why, demonstrate how we are learning from that as an organisation, and clearly explain the steps that we are taking to put it right. We collectively as Ministers have a role to play in that. I will reflect on his comments and explore what more we can do.

The Government have made significant strides to advance patient safety over the last decade. As I said, it remains a top priority not just for the Government but for me personally. We are creating a transparent learning culture across health systems. That is key to avoiding tragedies in the first place, and essential to driving the improvements that we want to see. As my right hon. Friend pointed out, patient feedback has to be at the heart of that. Patients have to have the opportunity to share their experiences.

It is vital that clinicians reflect upon the lessons learned and translate them into opportunities to improve their practice. That is vital for not just the individual consultant, doctor, nurse or allied health professional, but the NHS as a whole. We have to listen and learn from individual patient stories. Accountability is a thread that has to run through every single level of the NHS—from individual patient complaints and the learning they generate to organisational responsibility for the standard of patient care, through to integrated care boards and the delivery of high-quality outcomes and access to care for their populations.

The accountability owed to partner organisations and local patients is just as important as accountability to national bodies. As my right hon. Friend pointed out, that is why we passed the Health and Care Act 2022, which embeds the principle of accountability throughout the NHS and our health and care system.

[Sir Mike Penning]

The Minister is being generous in his comments to myself and to colleagues. The issue for colleagues and patients is that the over £2 billion bill, the delayed operations and the waiting lists would be remarkably smaller problems if we had addressed them right at the start. The biggest point, going back to my constituent, is that the wrong operation was done in 1986. That gentleman has been back and forth with the NHS, with help from myself and others, which must have cost the NHS a small fortune in legal fees. Instead of addressing the individual issue to stop it getting bigger, the NHS fobbed and fobbed it off and passed it back around.

I know we are short on time and the Minister wants to conclude. My final point is that when Ministers send out letters, it is often the trust that we are complaining about that has drafted the letter to their officials, which actually ends up coming to us. In a classic example the other day, I was thanked for being so supportive of the refurbishment of Watford General Hospital, when actually I have opposed it for the last 20 years. The trust wanted to send that message to the Minister, rather than address what we needed to address, which is patient safety. The stress on patients in this particular case is huge.

[Will Quince]

My right hon. Friend is right that there is a lot more that we can do. Reflecting what he has just said, I will touch on some of the measures that have been put in place over recent years.

In 2019 there was the NHS patient safety strategy. We introduced, for the first time ever, a patient safety commissioner. There is the Health Service Safety Investigations Body, which will be an arm’s length body from April 2023 and which was the brainchild of the Chancellor when he was Secretary of State for Health and Social Care. As my right hon. Friend pointed out, there has also been huge investment in maternity services following those awful cases, not just to boost staff numbers, but to improve leadership and culture. There have also been changes to the Care Quality Commission, with the single framework coming in from January next year.

My right hon. Friend is absolutely right that some cases take far too long, especially some of the neonatal cases. Those are often the cases that result in the largest payments made, but it can take many years before patients and families get the redress they needed. The Health Services Safety Investigations body is designed to be far more upfront about where something goes wrong. It is much better to learn the lessons in the period immediately after something has gone wrong than several years after the event, looking back retrospectively on what could have been done differently. We need to learn the lessons now and ensure that as few patients as possible go through the same experience. Clinicians, not just within that trust but across the integrated care board, or, where appropriate, across our NHS, should learn those lessons.

My right hon. Friend the Member for Hemel Hempstead has hammered home the point again about ministerial responses. I hear him, and I will speak with my hon. Friend the Member for Lewes to see what more we can do in that space. Those points are well made. However, it is difficult because of the number of NHS acute trusts and the fact that we rely on information about what happened on the ground. It is a huge and complex organisation, but I understand, recognise and take his point that ministerial responsibility and oversight is important.

We need to know the facts, and not just the facts as they are presented by a trust, in whose interest it might be to paint a rosier picture than it actually is on the ground—or to not paint the full picture. That is why it is so important that Ministers engage with local Members of Parliament to get the facts. They are the ones who are meeting with the trust executives and the board, as well as their constituents and the clinicians and health professionals on the ground delivering care, who will often—for want of a better word—whistleblow about what is actually happening in a trust, and not give the rose-tinted view that the executives of a trust may want.

This has been a hugely important debate. It speaks to issues that are at the heart of our NHS. It is about getting it right first time and the excellent and consistent patient care that we rightly expect from our NHS. I hope, to some extent, that I have assured my right hon. Friend the Member for Hemel Hempstead of the importance that the Government place on quality, excellent patient care and accountability. His points have been well made. I will reflect on them, as will my hon. Friend the Member for Lewes. I look forward to working with him to improve the situation across our NHS.

Question put and agreed to.

Oral Answers to Questions

Debate between Will Quince and Mike Penning

Monday 4th July 2022 Commons Chamber

[Will Quince]

The hon. Gentleman is right that accountability has to be at the heart of our proposals, and everyone who provides support for children and young people with SEND has a responsibility to deliver it effectively. That is why we are creating new national standards, and creating local and national dashboards so that local authorities, organisations and those who provide SEND services can be held to account. He is absolutely right that accountability and redress mechanisms are at the heart of our proposals. This is a consultation, and it is live until 22 July. We are consulting because we genuinely want to hear the views of the sector and all the parents and carers of children with SEND. Of course I would be very happy to meet him.

[Sir Mike Penning (Hemel Hempstead) (Con)]

My hon. Friend the Minister knows my passion for looking after children and young people around the SEND sector. I welcome the Green Paper and the consultation, because this is a debate that we have needed to have for some considerable time. But the issue in Hertfordshire is going to be around capacity, because the special educational needs schools in my constituency, which are brilliant, are full and double-oversubscribed. This is not all about money—it is sometimes about how it is provided—but there are serious financial problems in Hertfordshire, and I wonder if he would look at that seriously for me.

Oral Answers to Questions

Debate between Will Quince and Mike Penning

Monday 22nd February 2016 Commons Chamber

[Mike Penning]

Thank goodness the Chancellor did not listen to Labour Front-Benchers when we looked at police funding to 2020, because they wanted a 10% cut, and there will be no cut. We must make sure that we have an efficient service—the sort of efficient service I would have liked to have had when I was in the fire service—and that will be going forward.

[Will Quince (Colchester) (Con)]

6. What assessment she has made of trends in the level of knife crime.