Aortic Dissection: Patient Pathways and Research Funding

Helen Whately Excerpts

Tuesday 13th December 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Helen Whately)]

What we heard from the hon. Member for Enfield North (Feryal Clark) was a shame, but I will focus on what we heard from my hon. Friend the Member for Mid Derbyshire (Mrs Latham), which was one of the most powerful speeches I have ever heard in Parliament. It was also one of the most painful to hear, but I know that is not a patch on what she will have experienced in losing her son, Ben, so tragically, aged just 44. As she told us, he went to A&E to get help and was sent home, and then he died. How awful that was for her as his mother and for his whole family, including the loving wife he leaves behind and his two children. I am so sorry that she and all his family have had to go through that.

I cannot commend my hon. Friend enough on coming to the House and talking about her experience; on doing so in the Chamber, as she has done; on coming to meet me and other Health Ministers; and on drawing on her experience, her son’s experience and her whole family’s experience to try to make things better for other people who are at risk of aortic dissection—to prevent others from going through what she has gone through, and to try to save the lives of others so that some good can come out of what she has been through. I have a huge amount of respect for my hon. Friend for doing that, and I know that many people across the country, including those who will not necessarily even know what she has done, will be grateful to her for it. I thank her myself for that.

My hon. Friend helped to set up the Aortic Dissection Charitable Trust. She has been working with that trust very effectively to raise awareness of aortic dissection, improve diagnosis, and prevent aortic dissection in the first place, saving lives in doing so. She made several specific requests and asked several questions during her speech, which I will come to in a moment. We also heard from the hon. Member for Strangford (Jim Shannon), who is always so thoughtful in what he says and how he says it. He makes such valuable contributions to debates in this place, and it is so good to see him again—I think it is the third time in less than 24 hours that we have talked about healthcare.

[Jim Shannon]

I see more of the Minister than my wife.

[Helen Whately]

The third welcome I want to give is to Bob Harris, who is here today. He himself has suffered aortic dissection, and is working as an ambassador on this issue. It is very good to have him here with us.

We have heard during this debate about the sudden and heartbreaking impact that aortic dissection can have on families. That is why it is absolutely right that we should be talking about this issue today: we should be talking about how to raise awareness of the condition among medical professionals, about how to improve diagnosis so that aortic dissection is detected as quickly as possible, and about the research we need to make sure that more people survive. Sadly, around 4,000 people suffer from an aortic dissection in the UK each year, yet still many people have never heard of the condition. It is crucial that it is diagnosed and treated urgently, otherwise very sadly, it can be fatal. It need not be.

As we have heard today, diagnosing aortic dissection promptly is, unfortunately, not straightforward. The condition is relatively rare, which means medical professionals may be less familiar with its presentation. The symptoms of aortic dissection, such as chest pain, can be similar to other more common conditions, making it harder to accurately diagnose. Care pathways for aortic dissection vary across the country, meaning different patients often get different treatments.

I can reassure my hon. Friend the Member for Mid Derbyshire and other hon. Members here today that I am determined to improve the way the condition is diagnosed and treated. Earlier this year, NHS England launched its aortic dissection toolkit, which sets out the steps that commissioners, providers and clinicians should take to improve the care of patients with acute aortic dissection. The toolkit covers the pathway for aortic dissection, from recognition and diagnosis to treatment.

NHS England’s regional teams are currently implementing the toolkit within their local services, and we expect those improvements to significantly reduce delays to diagnosis and improve patient outcomes following treatment. NHS Digital has also made changes to NHS Pathways, which is a triage system used by NHS 111 and 999, to improve the recognition of chest pain likely to be associated with aortic dissection. However, I heard my hon. Friend say that the toolkit does not cover all the challenges that she is aware of in the pathway, so I will take that away and see how we can go further to make sure the toolkit is comprehensive or supplement it as necessary.

We have also heard today about the importance of raising awareness of aortic dissection among medical professionals. The Royal Colleges of Radiologists and Emergency Medicine published a best-practice guideline last year on the diagnosis of aortic dissection in the emergency department, in response to a report published by the Healthcare Safety Investigation Branch in 2021. I expect that to have a major impact on the prompt diagnosis of aortic dissection. The Royal College of Emergency Medicine, which sets standards of care in all emergency departments in the UK, has also developed guidance to support the timely diagnosis of aortic dissection. However, my hon. Friend told us that a freedom of information request showed that only some EDs are using the guidelines. Again, I will look into that, as guidance should be followed consistently across emergency departments.

Research is the piece of the puzzle that will drive forward progress and find the treatments of tomorrow. We need to understand better who is at risk of aortic dissection and how we should monitor them, we need to know how to most effectively detect and diagnose aortic dissection in emergency settings and how to improve treatment to make sure patients recover successfully. That is why the Department of Health and Social Care brought together a multidisciplinary group of experts and patient representatives in 2020 to consider research priorities for aortic dissection. That significant event identified research questions in diagnosis, treatment, care, awareness and education and, crucially, what matters most to people with aortic dissection and their families. In response to that event, the Department of Health and Social Care-funded National Institute for Health and Care Research launched a call for research on surgical treatment for aortic dissection. We await the outcome of the commissioning pool early in the new year.

The NIHR invests around £50 million a year on research into cardiovascular disease, including aortic dissection and other heart conditions. For example, the NIHR funded a major programme of work at Barts Health NHS Trust to develop and test a novel surgical treatment for aortic dissection, which is less invasive than routine care, allowing quicker procedure times and shorter hospital stays. It is also vital that we harness our understanding of risk to help prevent aortic dissection. UK Research and Innovation, which is funded by the Department for Business, Energy and Industrial Strategy, is supporting a study on how we can use genetic and other factors to predict aortic dissection and identify people at greater risk. That will pave the way for more preventive measures, such as blood pressure control, to be prescribed.

We know that there is interest in the academic community for a pipeline of research to improve outcomes for people at risk of and who have survived aortic dissection. I encourage researchers working in the field to harness the momentum building around aortic dissection research and to please come forward and make applications for funding.

My hon. Friend the Member for Mid Derbyshire also asked about data and called for more data on aortic dissection to be collected and made public. I will take that request away and raise it with NHS England, because she makes a really important point: the more data we collect, the more we know. Again, making it available more widely is one of the best things that we can do to improve understanding and support research into prevention, diagnosis and treatment. My hon. Friend also requested that we meet to discuss guidelines for genetic screening, which is another thing that I will take away and look into. I will get back to her on that.

This debate has made us all stop and reflect, and I will pause for a moment as well, because I think the hon. Member for Strangford is waiting to intervene on me.

[Jim Shannon]

I thank the Minister for her very helpful response. I always ask these questions, because it is important that we share the issues. In my contribution, I asked whether we could share information with Northern Ireland, Scotland and Wales, because we can all learn from it. We need to collaborate on research, because we can all benefit from it, wherever it may be—in Northern Ireland in my case, and in Scotland in the case of the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar). That might be helpful for us all.

[Helen Whately]

I completely agree with the hon. Member, and we can only do better if we share information across the whole United Kingdom and internationally, as work on this condition will be going on across the world.

This has been a really powerful debate, but it is not a patch on the pain that my hon. Friend the Member for Mid Derbyshire has been through. As she said so powerfully, each life lost to aortic dissection is not just one life affected. The condition affects the lives of all those around the person who is lost, be they mothers like her, fathers, husbands, wives, sons, daughters, grandchildren or friends—everyone who is affected when somebody is sadly lost too soon. I thank her again for her tireless work in raising awareness and campaigning, and I assure her that I will, in turn, do what I can in Government to support her efforts and to improve outcomes for all those affected by aortic dissection across the country.

Moles and Skin Tags: Testing for Cancer

Helen Whately Excerpts

Monday 12th December 2022 Commons Chamber

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I commend my hon. Friend the Member for Isle of Wight (Bob Seely) for securing this debate, and on telling us Zoe’s story so powerfully. It is a truly heartbreaking story of a young mum of just 26 with so much life ahead of her. It was harder still to hear because Zoe did the right thing and asked her GP about her mole, yet her skin cancer was not diagnosed until so late that she died just 55 days later. I pay tribute to Zoe’s family, including her mum, Eileen, who have campaigned to stop other people going through what they have gone through, and to Zoe herself. When I looked earlier this evening, more than 34,000 people had signed the petition.

Like Zoe’s family, as cancer Minister I want to stop people going through what they have been through. I want us to get better at preventing, diagnosing and treating cancer. Although we cannot remove the risk of skin cancer in its entirety, we can raise awareness of the things that increase the risk and help people take steps to protect themselves. Most skin cancers are caused by exposure to the sun. Getting sunburnt increases the risk—especially getting sunburnt as a child—as does using sunbeds. Those who have fair skin are at greater risk. As my hon. Friend told us, the lovely sunshine of the island he represents has its downsides, as does the healthy outdoor life that he describes.

As well as raising awareness of risks, we need to raise awareness of early signs and symptoms, and then what to do. We in Government are doing that. For instance, the NHS “Help Us, Help You” campaign has used TV advertising, social media and regional press to get the message out to people to get worrying signs checked out. We know that some people delay getting a check. That campaign has particularly sought to overcome those fears. If you are worried, it is always better to get checked out. Most people will get the all-clear, but the sooner you get a check, the better, because an early diagnosis improves the chances of successful treatment.

I know that Zoe did the right thing and asked her GP, which brings me to the importance of accurate diagnosis. For Zoe’s specific case there has been a full investigation locally, and I know the findings have been acted on. Specifically, teledermatology is now offered by all GPs on the Isle of Wight, and is increasingly available across the NHS. It involves a specialist medical photographer taking a detailed photograph of a skin lesion to check it for signs of cancer. That is a step on the path to more tests to confirm whether someone has cancer or is given the all-clear that no further tests are needed.

On the role of teledermatology, almost £1.5 million of our elective recovery funding has been allocated to seven cancer alliances to pilot self-referral for cancer symptoms, including skin cancer symptoms. I heard my hon. Friend’s argument for Zoe’s law to require all moles or skin tags removed to be tested for melanoma. I also heard him saying that he was not expecting an answer here and now, which I appreciate. I can assure him that I will take his argument away, look into it and then write to him with a full response on his proposal. I will also take away the suggestion from him and from other hon. Members about looking at the broader education of other people who might be able to spot something that might be an early sign of skin cancer. I recognise that people may not be able to see their back or the back of their head, for instance. Indeed, there may be opportunities to look at wider education. For sure, raising awareness overall of skin cancers and of what a person should do if they have a sign or a symptom will indeed mean that more people will know what to look out for.

[Jim Shannon]

I commend the Minister for her very positive answer and for what she said in relation to the nine centres across the United Kingdom, which is where the hotspots are. In an intervention on the hon. Member for Isle of Wight (Bob Seely), I referred to a pilot scheme in my trust area, the South Eastern Health And Social Care Trust, which seems to be having some good results. I always believe that the exchange of ideas is good for us all. It helps us to see what is being done here and it might help the Minister to know what we are doing back home.

--- Later in debate ---

[Helen Whately]

I thank the hon. Member for his intervention. I will look into the scheme in his area that he mentioned. One of the good things about the NHS is that all sorts of fantastic things are going on in pockets across the United Kingdom. One of the best things that we can do is find out what is working somewhere, and then spread that best practice more widely, so, indeed, I will look into what he suggests.

We are now seeing the most incredible advances in how we diagnose cancer as well as how we treat it. An example of this is the NHS-Galleri trial, which looks for blood markers to identify cancer risk. It can identify signs of more than 50 cancers and the trial has 140,000 participants. We should in no way limit our sights as to what can be achieved in the here and now. The crucial thing here and now is early diagnosis, which much improves the prospects for successful treatment. Zoe’s family wants those who do have cancer to get an early diagnosis so that they have the chance to survive and live their lives as, sadly, Zoe did not. That is something that I want, too. I want fewer people to get cancer, those who do have cancer to be diagnosed earlier, and, in turn, to be treated successfully so that they can live their lives to the full.

Question put and agreed to.

Cancer Services

Helen Whately Excerpts

Thursday 8th December 2022 Commons Chamber

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I very much thank my hon. Friend the Member for Winchester (Steve Brine) for raising the Select Committee’s report on cancer today. I know that he is passionate about this issue both as a former cancer Minister and for the personal reasons that he mentioned, as do I. The Committee’s 12th report makes valuable recommendations, and I am grateful to it for all its hard work. I assure him and hon. Members that we are working night and day, together with our colleagues in the NHS, on three priorities for cancer in particular. They are: to recover from the backlog caused by the pandemic; to get better at early diagnosis and treatment, using the tools and technologies that we have; and to invest in research and innovation, because we know that advances in such things as genomics and artificial intelligence have the potential to transform our experience of cancer as a society.

This is my first opportunity to congratulate my hon. Friend on his election as Chair of the Health and Social Care Select Committee, where I know he will do an excellent job, bringing his expertise as well as his passion on the subject to bear. I also welcome the focus that he will bring to the Committee on cancer and prevention, as he mentioned in his remarks. I am truly sorry that he has lost members of his family to cancer, including, as he said, his father. He rightly said that cancer affects pretty much everyone in our country in one way or another.

My hon. Friend talked about some of the challenges that we and our NHS face in the diagnosis and treatment of cancer. In his time as cancer Minister, he was absolutely right to focus on early diagnosis, because we know that that makes such a difference. As he said, he set the 75% ambition for early diagnosis to be achieved by 2028, and the NHS is indeed working towards that at the moment. He talked about wanting to see the plan for achieving that ambition—I say “ambition” because, as he will know, it was intentionally set as a stretching target—and about the importance of us having the capacity to treat cancer. I think that is currently higher than it was before the pandemic, but I certainly see the need to expand it further.

My hon. Friend talked about the importance of surgical hubs. We have 89 of them, but more are planned, with £1.5 billion of capital funding recently approved for their expansion and future new hubs. He rightly talked about the importance of cancer research and the alignment of that with cancer treatment and cancer services. He also talked about the significance of health disparities and the prevalence of risk factors such as higher smoking and obesity rates in more deprived communities. I will address some of those points during my speech.

The hon. Member for Easington (Grahame Morris) spoke in particular about radiotherapy as well as giving a broader perspective. As he said, we met the other day together with Professor Pryce, and he raised his concerns with me about the use of radiotherapy, the impact of tariffs, the potential for better use of radiotherapy machines, staff, and several other points in the plan. It is too soon to give him the quality of answers that I would like on those points, but I am looking into exactly what he raised and will get back to him and those others we met as well.

My hon. Friend the Member for Erewash (Maggie Throup)—I have huge respect for her, including the work that she did as a Health Minister and the expertise she brings to the debate—is absolutely right about the importance of community diagnostic centres. We are rolling them out around the country, with 19 more just announced, increasing our capacity to diagnose cancers promptly. She also spoke about workforce pressures. I am sure she will know that the 2017 cancer workforce plan was delivered and, in fact, exceeded by over 200 additional staff. Since then, Health Education England has received additional funding of £50 million for the cancer workforce in the last financial year and this one.

I agree with my hon. Friend that we should continue to focus on ensuring that we are training, supporting and retaining the cancer workforce that we need. That is so important to achieving our ambitions in cancer as well as the wider NHS workforce. Indeed, many of those who work in the NHS will be looking after patients with cancer, not just those who might have a specific cancer workforce label. I am sure she will know that we are well on our way to achieving our ambition of 50,000 more nurses in the NHS, with over 29,000 more at the moment.

My hon. Friend also spoke about cancer equipment. For instance, since 2016, £160 million of capital investment has been invested in radiotherapy equipment. I will take away her call for an equipment audit. She also importantly talked about obesity and alcohol as risk factors, although I appreciated that she said we should focus on alcohol reduction after the festive season. I thank her for allowing us to enjoy a drink over Christmas.

[Grahame Morris]

I am amazed that figures are not to hand on how many radiotherapy machines are more than 10 years old. Is it unreasonable to expect that NHS England would have an ongoing audit to identify which machines need replacing on a planned basis? Will that be addressed?

[Helen Whately]

There will be huge numbers of figures on things that NHS England will be monitoring. I said to my hon. Friend the Member for Erewash that I am very happy to look at her specific suggestion, on the extent to which the data already exists or whether we should be collecting it. That is part of what I will be looking into when I follow up on that.

We heard from the hon. Member for Coventry North West (Taiwo Owatemi), who brings really valuable experience to this topic. She said that she is a former oncology pharmacist and, if I heard her right, that she also volunteers as a pharmacist in her local hospital. That is hugely welcome experience to bring to the debate. I am very happy to speak to her more about some of the challenges she raised. I will follow up after the debate to see if we can get that in our diaries.

The hon. Lady pointed out that we are not achieving our targets on treatment rates, which is absolutely true, but she also spoke about cancer referrals. On that point, I want to share some good news. More people than ever before are being referred to hospitals by their GPs to see if they have cancer. The latest data for October this year, published only this morning, shows that almost 250,000 urgent cancer referrals were made by GPs in England, which is up about 109% on the levels in October 2019. It is 10,000 more than in October last year and over 35,000 more than in October 2020. That is thanks to the hard work of GPs, to the 91 community diagnostic centres which have carried out more than 2 million additional scans, tests and checks already, and to all the people who have come forward and got themselves checked. We know it is not always easy if you are worried that you might have something that could be cancer. We are working hard to encourage people to come forward if they are worried, so that we can improve early diagnosis. That is why we are working to raise awareness with campaigns such as “Help us, Help you” alongside targeting case-finding efforts such as targeted lung health checks. Such initiatives are successfully countering the pandemic’s negative impact on cancer referrals.

In further important news, NHS England announced it is expanding direct access to diagnostic scans across all GP practices. That will cut waiting times and speed up diagnosis or the all-clear for patients. Since November, every GP team has been able to directly order CT scans, ultrasounds or brain MRIs for patients with concerning symptoms, but who fall outside the NICE guidance threshold. Non-specific symptom pathways are transforming the way that people with symptoms not specific to one cancer, such as weight loss or fatigue, are either diagnosed or have cancer ruled out. That gives GPs a much-needed referral route, while speeding up and streamlining the process so that, where needed, people can start treatment earlier. Thankfully, with the increased level of referrals, the majority of people referred will be given the all-clear. However, it is crucial to start treatment promptly for those who are diagnosed, while giving peace of mind to those who do not have cancer.

On treatment, my Department has committed an additional £8 billion for the next two years, on top of the £2 billion elective recovery fund, to increase elective activity including for cancer services, because speed of treatment following early diagnosis is of course very important.

I am looking at the time and I know that I need to try to wrap up promptly. I will skip as fast as I can to a conclusion, while answering a couple of points that were raised as we go.

Many hon. Members commented on the pandemic. I recognise that the pandemic severely disrupted health services. The recovery of performance is a multi-year effort. The NHS is working very hard with a delivery plan specifically to tackle the covid elective care backlog. Under the plan, reducing the number of patients waiting over 62 days for treatment is a top priority.

Many hon. Members are interested in the progress of the 10-year cancer plan. We are reviewing the responses we have received on the call for evidence to that plan. In parallel, I am closely scrutinising holding the NHS to account on its elective recovery plan, a major part of which is cancer care, as well as looking to the future and making sure we drive forward research and innovation, including, for example, with our recently announced life sciences cancer mission which will invest over £22 million in a vaccine taskforce approach to cancer research.

I would like once again to thank my hon. Friend the Member for Winchester for securing this debate today. I look forward to working with him and other hon. Members on improving cancer outcomes.

Oral Answers to Questions

Helen Whately Excerpts

Tuesday 6th December 2022 Commons Chamber

[Andrew Lewer (Northampton South) (Con)]

4. What steps his Department is taking to increase the size of the social care workforce.

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I thank all those who work in social care for what they do day in, day out for people whose lives depend on care. We are supporting care homes and agencies in their efforts to recruit staff, including with a substantial national recruitment campaign. In fact, colleagues may have seen some of the adverts while watching popular programmes such as “I’m a Celebrity”. We have also added social care workers to the shortage occupation list, so that social care can benefit from international recruitment to increase the workforce in the short term.

[Andrew Lewer]

A recent report from the Motor Neurone Disease Association, outlined at the all-party group on motor neurone disease, which I chair, found that most unpaid MND carers provide more than 75 hours of care a week, but many are unable to access respite services due to the lack of adequately skilled care workers equipped to care for the complexity of MND sufferers’ needs. Will the Minister commit to increasing specialised training for conditions such as MND in the social care workforce to protect carers’ health and wellbeing?

[Helen Whately]

My hon. Friend makes an important point. I, too, have heard from family carers about the difficulties that they have faced in getting skilled professional help, which, in turn, gives them support and respite. At the moment, we provide £11 million annually for a workforce development fund, which social care employers can access to help to pay for staff training. Looking ahead, we are working on social care workforce reforms, of which training and skills will form a substantial part. I commit to looking into his suggestion that specialist training for MND care should be part of that.

[Tim Farron (Westmorland and Lonsdale) (LD)]

In the lakes, we have a problem with social care: although the people working in the care industry are phenomenal, talented and dedicated, the average age of the population is 10 years above the national average, so the number of people who need to be cared for is greater and the size of the workforce is smaller. Undoubtedly, poor pay, poor conditions and a lack of career prospects are a major problem in recruiting and retaining the care staff that we need. We also have a special problem in our area because of the absence, or indeed, the evaporation, of the long-term private rented sector, which is where the carers normally would have lived. Will the Minister talk to her colleagues in the Department for Levelling Up, Housing and Communities to make sure that we have a comprehensive package for communities such as mine in Cumbria, so that we have well-paid carers and places in which they can afford to live?

[Helen Whately]

The hon. Member makes a really important point. I will say two things. In the short term, we are supporting social care with £500 million through the discharge fund this winter. That will go into increasing capacity in social care and addressing some workforce challenges in areas such as his. In the long term, we are introducing social care reforms, including in the workforce. One thing we need to look at is ensuring that housing is available for the social care workforce.

[Mr Peter Bone (Wellingborough) (Con)]

I have listened to the Minister talk about increased social care, but I do not recognise that in my area. Northampton General Hospital, which is one of the hospitals that serves my constituency, has around 150 patients who could medically be discharged but cannot be. That accounts for 19% of the beds. At the same time, West Northamptonshire Council is closing Spinneyfields, a 51-bed step-down facility in my constituency, yet it has a private finance initiative contract and, for the next seven years, will pay £700,000 for an empty building. How can that be right? Will the Minister sort it out?

[Helen Whately]

I will take away that example from my hon. Friend’s constituency and look into it. I want to see increased capacity in step-down care and social care during this winter and beyond, but particularly during this winter, supported by the £500 million discharge fund. That will go to areas such as his and across the country to help to make sure that people who do not need to be in hospital can be out of it getting the care that they need.

[Mr Barry Sheerman (Huddersfield) (Lab/Co-op)]

When will the new Health team wake up to the fact that many of the things that we have discussed this morning—but particularly social care—will be solved only by treating local authorities as friends, allies and partners, rather than the enemy? Please can we have action to make local authorities full partners in delivering every sort of care?

[Helen Whately]

After hearing the hon. Member’s point, I should think that he therefore welcomes the fact that we have set up integrated care systems, which bring together health and social care. The £500 million discharge fund that I have mentioned is allocated to local areas to be pooled into the better care fund and spent jointly between local authorities and the NHS. Funding is an important part of this. In the autumn statement, social care received a historic funding settlement of £7.5 billion over the next two years. That is important, as well as ensuring that the NHS and local authorities work together hand in hand.

[Jim Shannon (Strangford) (DUP)]

5. When his Department will publish the 10-year cancer plan.

--- Later in debate ---

[Margaret Ferrier (Rutherglen and Hamilton West) (Ind)]

10. What steps his Department is taking to improve survival rates from sudden cardiac arrest.

[The Minister of State, Department of Health and Social Care (Helen Whately)]

Immediate cardiopulmonary resuscitation doubles or quadruples the chance of surviving an out-of-hospital cardiac arrest. Defibrillation within three to five minutes dramatically improves the chance of survival, which is why NHS England is establishing a network of defibrillators and community first responders to save up to 4,000 lives a year by 2028.

[Margaret Ferrier]

On average, 150 people a day die from sudden cardiac arrest outside hospital. Access to a defibrillator is crucial for survival. Without one, the chance of surviving drops by 10% every minute. I welcome the Government’s commitment to rolling out defibrillators across state-funded schools in England and Wales, but I share the concern that, because of significant ongoing supply chain issues, it might not be achieved. Can the Minister explain how the Department is helping to reach the target of supplying 20,000 defibrillators by 2023?

[Helen Whately]

As the hon. Lady says, access to a defibrillator makes a great difference to the survival prospects of somebody having a sudden cardiac arrest, which most commonly happens either at home or in the workplace. Since May 2020, the Government have required all new school builds and refurbishments to have defibrillators installed. I am happy to look into the concern she raises and get back to her. I am also working on other initiatives to make sure we get more defibrillators into public places.

[Sir Edward Leigh (Gainsborough) (Con)]

Like many of my Lincolnshire constituents, I live in a remote village and in the unlikely event of my having a sudden cardiac arrest—I am sure that would disappoint people—there is no prospect of an ambulance coming within 10, 15 or even 20 minutes. The Government could make themselves really popular in rural areas by having a massive campaign to roll out defibrillators in most villages. For instance, we have a good opportunity to put a defibrillator in all those red telephone boxes that BT are now closing down.

[Helen Whately]

My right hon. Friend makes an important point, and this is exactly why work is going on to increase the number of defibrillators across the community, for instance, in villages such as his. Many villages will already have them. We are also supporting the NHS to train community first responders to make sure that there are people all across the community who have the skills to do CPR— cardiopulmonary resuscitation—and use a defibrillator. I look forward to being able to announce shortly a new initiative that will mean further defibrillators across our communities.

[Catherine West (Hornsey and Wood Green) (Lab)]

11. What progress he has made on delivering social care reform.

[The Minister of State, Department of Health and Social Care (Helen Whately)]

We are already putting social care reforms into practice. For instance, we want care providers to adopt digital care records, and more than 50% have already done so. I am determined to shine more light on our social care system, so our new Care Quality Commission-led assurance of local authorities’ social care duties will start in April.

[Catherine West]

One of the worst vacancy rates across the NHS is that of geriatricians. What urgent action is the Minister putting in place to ensure that people either at home with domiciliary care or in social care settings are seeing a geriatrician consultant regularly? If there is a shortage, which I believe there is, what action is she taking to have more doctors train as geriatricians?

[Helen Whately]

The hon. Lady makes an important point about people who are receiving social care also having access to the healthcare they need and these systems working together across our health and social care systems. We are training more doctors overall, and we have an increase in medical school places, which is leading to more doctors coming through. I am happy to take away and look at her question about the number of geriatricians.

[Wendy Morton (Aldridge-Brownhills) (Con)]

On delivering social care reform, does the Minister agree that we also need to be looking at how the funding packages work, particularly across borders? I have a constituent whose case falls between two local authorities. Will she agree to meet me as a matter of urgency to make sure that this poor constituent receives the funding she needs for her husband’s care?

[Helen Whately]

As announced in the autumn statement, we have a record funding settlement of £7.5 billion going into the social care system over the next two years, to improve both access and quality of care. I am happy to meet my right hon. Friend to look into the specific challenge that she has outlined, because it is important that local areas are working together across boundaries.

[Mr Speaker]

I call the shadow Minister.

[Liz Kendall (Leicester West) (Lab)]

Let’s just tell it like it is on the Government’s record on social care reform. Their cap on care costs was first promised 10 years ago. In 2015, they delayed it and in 2017 they scrapped it. In 2019, the right hon. Member for Uxbridge and South Ruislip (Boris Johnson) again promised to fix the crisis in social care, but last month the Chancellor buried the policy, once and for all. After 12 long years, what have Conservative Members got to show on social care: the highest ever staff vacancies; millions left without the care they need; hospitals full of people who do not need to be there; and families picking up the strain. Isn’t the truth on social care, just as with our economy, transport, housing and schools, that the Conservatives have run out of excuses and run out of road, and the country deserves a change?

[Helen Whately]

We have delayed our social care charging reforms because we listened to those in the system and we heard local authorities asking for more time to prepare. Importantly, we have allowed local authorities to keep the money allocated to that in their bank accounts to fund some of the current pressures on social care. I ask the hon. Lady to recognise the record funding settlement for social care in the autumn statement—£7.5 billion for social care over the next two years—which she has not even acknowledged. That is coupled with the fact that we are pressing full steam ahead with our system-wide reforms to social care, with funding of more than £1 billion to support the workforce and innovations in social care and to transform the quality and access to social care across the country.

[James Wild (North West Norfolk) (Con)]

12. What recent assessment he has made of the expressions of interest submitted by Queen Elizabeth Hospital King’s Lynn NHS Foundation Trust to be part of the new hospitals programme.

--- Later in debate ---

[Mrs Sheryll Murray (South East Cornwall) (Con)]

I met local care providers last Friday, and they raised two main points with me: concerns about energy costs and covid in care homes. They were keen to see their nursing staff vaccinated with residents, all at the same time. I recognise that that happens in some places, but can we look at making it the norm throughout the country?

[The Minister of State, Department of Health and Social Care (Helen Whately)]

My hon. Friend makes an important point. The NHS is strongly encouraging local vaccination teams to vaccinate staff, as well as residents when they visit care homes. That should be normal practice. I am happy to look into it, if that is not happening in her area. I take this opportunity to encourage any health or social care worker who has not had their covid or flu jab this winter to please go ahead and get one.

[Clive Efford (Eltham) (Lab)]

T5. Parents are becoming increasingly worried about the current prevalence of strep A. It is a time of year when parents are going to have children with high temperatures and sore throats, so concern is likely to be very high. There are also concerns about the availability of antibiotics. Does the Secretary of State believe that this is a moment where the Government need to make a statement and show clear leadership to calm people down and reassure them about the situation?

--- Later in debate ---

[Anna Firth (Southend West) (Con)]

On Saturday, I visited Chalkwell Grange, a brilliant new care home in picturesque Leigh-on-Sea which is struggling to recruit due to the guidance that all care workers should wear face masks. Will the Secretary of State give care homes the best Christmas present ever and change the word “should” to “can” or “may”, to put them in charge of their own infection control?

[Helen Whately]

I thank my hon. Friend; it is good to hear that she has visited a local care home. I have also heard what she heard from staff. Although face masks are important for infection control, we know that they have downsides, such as making communication harder. I have asked for updated public health advice on the use of masks in care homes and I look forward to updating hon. Members and the social care sector on the guidance about that shortly.

[Daisy Cooper (St Albans) (LD)]

My constituent is a victim of sexual misconduct by a medical professional, but they cannot challenge that professional’s fitness to practice because of the five-year rule. The General Medical Council wants that rule to be scrapped and the Government consulted on whether to get rid of it more than a year ago. Can the Minister say whether it is the Government’s intention to scrap it? Will she meet me to discuss how important it is that the GMC can explore whether a potentially dangerous medical professional who is still practising may be unfit to do so?

--- Later in debate ---

[Mrs Emma Lewell-Buck (South Shields) (Lab)]

My constituent Margaret Cramman is a full-time carer for her daughter. Throughout the pandemic, she was denied respite care. Now the care setting insists on testing for visitors and mask wearing for staff, which causes distress to some of the young people being cared for, who rely on vital facial recognition. Nearly all the other covid guidance has been reviewed, but the guidance for respite care remains the same. Why are carers and those they care for always an afterthought for the Government?

[Helen Whately]

I point the hon. Member to the answer that I gave to my hon. Friend the Member for Southend West (Anna Firth) a moment ago specifically about face masks. I have asked for updated guidance for the social care sector on the use of face masks. I recognise the difficulties they cause—for instance, in communication—and I am looking forward to being able to give an update to hon. Members and the sector on that shortly.

[Mr Speaker]

Last question, Margaret Ferrier.

Pulmonary Embolisms: Diagnosis

Helen Whately Excerpts

Wednesday 30th November 2022 Commons Chamber

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I commend the hon. Member for Dulwich and West Norwood (Helen Hayes) on securing this debate. She is quite right to bring this issue before the House, as pulmonary embolisms are not widely known about and are extremely challenging to diagnose. When diagnosed and treated, the survival rate is very high, and that makes misdiagnosis all the more tragic.

Let me express my condolences to Tim Edwards and his family for the loss of his mother earlier this year. I thank him for the research that he carried out into deaths from pulmonary embolisms, including the information that he has gathered about the variation in the figures around the country. The hon. Member set out clearly the sad facts of Jenny Edwards’ death, particularly how her pulmonary embolism was not diagnosed and unknown until the autopsy. I recognise the need for better diagnosis and I agree with her about the importance of that. I will talk about what we can and are doing, taking on board the hon. Member’s points. I will also talk about reducing deaths from pulmonary embolism by preventing their occurrence. We can never completely remove the risk of embolism, but we can all take action, especially younger people, to reduce the risk.

The NHS has guidance from the National Institute for Health and Care Excellence about diagnosing and treating pulmonary embolisms effectively, which states that patients with symptoms or signs of pulmonary embolisms who see a clinician should have a full medical history, physical examination and chest X-ray. Where there are signs, a D-dimer blood test and the Wells score should be used to determine the likelihood of pulmonary embolism. The challenge is often for the clinician to see the signs and symptoms in the first place, which is increasingly difficult in older patients or those with co-morbidities such as bronchopneumonia, chronic obstructive pulmonary disease, asthma or covid-19. The hon. Member talked about that a moment ago.

That challenge is very much the focus of the Healthcare Safety Investigation Branch’s national investigation into the timely recognition and treatment of pulmonary embolisms in emergency departments. Its report was published in March this year, and it focuses on clinical decision making and improving diagnoses. HSIB notes that the majority of pulmonary embolisms were correctly identified and treated, but it felt that the risk of serious harm or death warranted further exploration. The report found that recognising pulmonary embolism is particularly challenging for less experienced staff, especially when the signs and symptoms may be non-specific or atypical. The decision to initiate treatment is one that balances risks, and the decision can benefit from expert knowledge and skill. The report also notes that, despite expertise and the available tools to identify patients who may have a pulmonary embolism, a small number may always sadly be missed.

During the investigation, HSIB found that emergency department staff had asked for further guidance on the diagnosis of pulmonary embolism. The fact that staff sought that information is a good thing and the right thing to do. HSIB made three safety recommendations on improving guidance and training for clinical staff. First, it recommended that NICE should review the report in relation to its thrombosis guidance. In response, NICE carried out a review of the guidance and has decided to update it to include recommendations for people with covid-19. NICE currently expects to publish the updated guidance in July.

Secondly, HSIB recommended that the Royal College of Emergency Medicine promotes best practice for diagnostic decision making. The royal college is reviewing its guidance, which will be done by the end of this year. In addition, it is reviewing safety information about pulmonary embolism and has education activities planned, including e-learning.

Finally, HSIB recommended that Health Education England develops a strategy to support the training of clinicians to develop their decision-making skills. Health Education England is working closely with professional bodies and provides them with simulation-based interventions to support improved outcomes in patient safety.

Getting a diagnosis of pulmonary embolism is by far the most critical issue to address, as treatments are effective provided that they are administered quickly. Anticoagulation medicines are the main treatment for suspected and confirmed pulmonary embolism. These medicines reduce the formation of further blood clots. After a diagnosis is confirmed, patients continue treatment with longer-term anticoagulant medicines to prevent the formation of future clots.

The importance of effective diagnosis and treatment for people with pulmonary embolism cannot be overstated. While we are on the topic, however, we can all take steps in our day-to-day lives to avoid an embolism—I am not making these comments in relation to any individual case, including the sad death of Jenny Edwards that the hon. Lady has been talking about, but for wider society.

Smoking raises the risk of unwanted blood clots and makes it more likely that platelets will stick together. Smoking also damages the lining of the blood vessels, which can cause clots to form. Stopping smoking significantly reduces those risks. Sitting or being sedentary for long periods, such on a long-haul flight or working at a desk, increases the risk of clots forming. Because the blood is not flowing as much, the cells and proteins in blood settle out and form clumps. Taking regular breaks and moving around reduces the risk of clot formation. Regular exercise, staying hydrated, eating healthily and maintaining a healthy weight are actions that we can all take to reduce the risk of blood clots, which may lead to a pulmonary embolism.

GPs have an important role to play in helping to identify people at risk. The quality and outcomes framework and the investment and impact fund incentivise GPs to deliver proactive case finding and early intervention for patients at higher risk, as well as the ongoing management of patients with long-term conditions that put them at greater risk of blood clots.

In conclusion, raising awareness of pulmonary embolisms in clinical settings, and the significance of early diagnosis, is important but challenging. These challenges must be overcome, as timely and accurate diagnosis of pulmonary embolisms will save lives. Today’s debate has been an important opportunity to talk about how the healthcare system is working hard to improve on the issue. The hon. Member mentioned some research, and I would be happy for her to send it to me so that I can make sure that it is taken on board in some of the work that is going on in this area. I again pay tribute to her constituent, Mr Edwards, who has turned his personal tragedy into action to prevent future deaths due to pulmonary embolism, and for that he should be proud.

Question put and agreed to.

Social Care

Helen Whately Excerpts

Thursday 24th November 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I congratulate my right hon. Friend the Member for Ashford (Damian Green) on securing this debate. I thank him for all the work he does as Chair of the all-party parliamentary group on adult social care and for his long-standing dedication to the social care sector—not least by calling debates such as these. I look forward to more. I thank him for his words earlier. I took away from what he said a phrase that sounded very similar to him saying, “I’ve got your back when it comes to social care.” His dedication to social care is with good reason. Social care is too often overlooked, yet it is so important. It is important to people across the country, important to those who need care to live and vitally important to their families. Social care employs around 1.5 million people across the country and it is a significant part of the economy.

I agree with so much of what my right hon. Friend the Member for Ashford has said this afternoon. I agree with him on the importance of the social care workforce, including the important point about status. I agree with him on the importance of the voice of social care within integrated care systems, not just with regard to local authorities but care providers too. I agree with him about the potential of technology, particularly to help people stay in their own homes, and on housing for older people and those of working age who need care. That in itself would be worth another debate. Indeed, I have recently spoken to our colleague the Housing Minister about that and I know she is interested in taking the matter further. He also rightly talked about the economic value of social care and the importance of unpaid carers, as did the hon. Member for Leicester West (Liz Kendall) today and on other occasions.

I will pick up on some of those points and talk about what we in Government and I as Social Care Minister are doing, starting with what social care does and what it is for. Social care starts with the person who needs care and, closely alongside that, those who may care for them unpaid—usually a family member. Our ambition in Government is to make sure that all those who need care get it and get it in a way that works for them, meeting their own needs and circumstances to a standard that we would rightly expect in our society.

Care should enable people to live their lives to the full, with the greatest possible independence, while recognising that caring can also place great demands on unpaid carers. We need to be able to support carers themselves to live their own lives, alongside caring for those they love. While we are on the subject, it is also worth mentioning the significance of social care for working-age adults and remembering that social care is not just about older people living in residential care homes. That is often what people think about but it is far from it. It is about helping many thousands of people earlier in their lives to live life to the full. Many of us will only really consider social care when we or a loved one need to draw on that support—often in a time of crisis. However, we should not wait until that point to realise how important social care is to all our lives.

The scale of the social care workforce stands at around 1.5 million people and the size of social care in our economy is valued at around £15 billion per annum. We all know that health and social care are intrinsically linked. While I am always determined to talk about the value of social care in its own right, we also know that one of the reasons we have around 13,000 patients in hospital at the moment who could and should be somewhere else, usually their own home, is because of the pressures on our social care system.

My right hon. Friend the Member for Ashford mentioned funding. I will say to him and the hon. Member for Leicester West that last week’s autumn statement showed that the Government recognise the importance of social care. The Chancellor of the Exchequer, my right hon. Friend the Member for South West Surrey (Jeremy Hunt) announced up to £2.8 billion of additional funding in 2023-24 and up to £4.7 billion in 2024-25, specifically for social care and also discharge from hospital into social care. That was the biggest funding increase that social care has ever had and that is despite the difficult decisions that had to be made in the autumn statement to ensure broader economic stability.

In the run-up to that statement, the Government had listened to the concerns of local government and took the difficult decision to delay the planned adult social care charging reform from October next year to October 2025. Crucially, the funding that was in place for that reform over that period will be retained in local authority budgets to help them meet some of the current pressures in social care.

The substantial funding settlement that social care received in the autumn statement will do three things. First, it will help social care afford the extra costs the system faces, which I have heard loud and clear from local authorities and care providers. Secondly, it will ensure that more people can be discharged from hospital when they are ready to leave, and that they get the social care and recovery support they need. That builds on the £500 million adult social care discharge fund, which will go to local care systems this winter. Thirdly, and importantly, it means we can proceed with ambitious reforms to the social care system. That involves investing in the workforce, better data and technology, and increasing the oversight of the social care system. That will improve access and quality. My right hon. Friend the Member for Ashford urged us to take wider action, and I assure him that we are doing that.

Our 10-year vision for reform was set out in the “People at the Heart of Care” White Paper, and we are already acting on that. In fact, some of the work I kicked off last time I was social care Minister has already made great strides. For instance, the introduction of social care assurance at local authority level, led by the Care Quality Commission, will be launched next year, giving local authorities, the public, hon. Members and the Government much more insight into the vital part that local authorities play in commissioning and overseeing the provision of social care in their areas. The next steps for us are to set out in more detail the plan for some of the other areas of reform—most notably the workforce, data and care records, technology and, with the Department for Levelling Up, Housing and Communities, housing.

I assure hon. Members that our reforms are ambitious and will lay the foundations for generations to come. Our wider reforms to social care will go hand in hand with the establishment and development of our integrated care systems. Forty-two ICSs across the country bring together NHS organisations, integrated care boards, local authorities and, importantly, care providers in integrated care partnerships. We are ambitious about doing that crucial thing that many hon. Members have talked about—joining up social care and the health services more effectively.

In the work that I am doing as Minister with oversight of hospital discharge—I see myself as important in joining up the two systems at the level I am at—I am already looking to integrated care systems and their leaders to be the lynchpins in joining up the NHS with social care more effectively than ever before, so that people are cared for in the best place for their needs. That is often not hospital. In turn, that ensures that hospitals have space for those who really need to be cared for there.

I want to spend a moment talking about the workforce in the near term. Our passionate, compassionate, skilled and dedicated social care workforce, including local authority social workers and occupational therapists, makes such an important contribution to our communities. I truly want social care to be a rewarding career with clear opportunities for progression, where people are rightly recognised for the important work they do. In our reforms, I want to address some of the problems that my right hon. Friend raised for those working in social care—for instance, career progression.

Right now, in recognition of the shortages in the workforce and the vacancies, we are working hard with the Department for Work and Pensions to promote adult social care careers to jobseekers. Earlier this month, we launched a new domestic national recruitment campaign. Anyone who has been watching “I’m a Celebrity”—some colleagues may have been—will have seen some of those very effective adverts. I look forward to them helping more people go into social care in the short term. We are also doing some work to support international recruitment to help with some of the near-term pressures on the workforce.

I want to talk a bit more about carers, because for most people care begins at home with their families. Many millions of people across the country care for loved ones, and I recognise what that commitment means for them and their own lives. In fact, today is Carers Rights Day, and I am therefore glad that the Health and Care Act 2022 gave carers new rights. They include new duties on NHS England and the new integrated care boards to involve carers in their public engagement; new provisions on the integrated care boards to involve carers in relation to some of the services that they oversee, such as prevention services and the diagnosis, care and treatment of the person for whom the carer cares; and responsibilities for NHS trusts to involve patients and carers, including young carers, at the earliest opportunity in discharge planning for people who may need care and support as outpatients. Discharge is a moment when there can be a real worry of significantly greater burdens on carers, so involving carers in those decisions is important. I should also flag the importance of respite and support for unpaid carers, which is recognised by the nearly £300 million of funding this year for respite services through the better care fund.

I thank all hon. Members for their well-informed and thoughtful contributions to the debate. We are deeply committed to supporting adult social care, the millions of people who rely on it for themselves and their families, and those who work in it. I am committed to supporting social care, reforming social care and making sure that, as a society, we recognise social care for what it is: essential, important and truly valued. Finally, I thank everyone providing care on the frontline—people who go the extra mile, day in and day out. I thank them for what they do.

Huntington’s Disease

Helen Whately Excerpts

Wednesday 9th November 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I congratulate the right hon. Member for Leeds Central (Hilary Benn) on securing this debate on Huntington’s disease, and on shining a light on this condition, which we all recognise has a truly devastating impact on those affected by it and their loved ones. I also thank the hon. Member for Strangford (Jim Shannon) for his speech. It is a pleasure to be together in Westminster Hall for the second day running. The hon. Member for Paisley and Renfrewshire North (Gavin Newlands) gave a perspective from Scotland, and we also heard from my right hon. Friend the Member for Ludlow (Philip Dunne) and the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts), which shows the interest in and concern about care for people suffering from Huntington’s disease.

The right hon. Member for Leeds Central spoke powerfully and clearly drew on his own experience, as he mentioned that he knows somebody with Huntington’s disease. It is important that we all bring to this place our own experiences, whether they arise from speaking to our constituents or from contact with family and friends, because they add to what we can do here in Parliament.

The right hon. Gentleman gave a long list of the symptoms of Huntington’s and their consequences, and described how all that can play out for individuals with the disease—agonisingly slowly over 15 to 20 years. He also spoke about what that means for those around the sufferer, not only as carers, but as family members who might carry the gene, but who might choose not to have a test and to live without knowing whether they have it. Clearly, that brings its own challenges, including mental health challenges. He made a point that I found very powerful: he said that Huntington’s is a thief that slowly steals family, friends and the person someone used to be. I am sure that rings true to people who are suffering from the disease and those who love them. I thank him for bringing the issue here, and for speaking so powerfully.

The right hon. Gentleman asked several questions, which I will come to, but I want to start from the top: Huntington’s disease is estimated to affect one person in 10,000 in the UK, so it is a rare disease. Rare diseases are those that affect fewer than one person in 2,000. While rare diseases are individually rare, sadly, they are all too common collectively. One person in 17 will be affected by a rare disease at some point in their life, and in the UK that amounts to more than 3.5 million people. We must ensure that they get the best possible diagnosis, treatment and support.

[Matthew Pennycook (Greenwich and Woolwich) (Lab)]

The Minister is generous in giving way. The available figures suggest that 8,000 people are affected by this truly awful disease, but in truth, owing to the problems with diagnosis that have been described, and due to stigma and misrecorded deaths, the prevalence of Huntington’s is uncertain. Will she give us a sense of what the Department is doing to secure a more accurate estimate of the figure, which would give us a better grasp of the scale of the challenge?

[Helen Whately]

The hon. Gentleman makes a good point. As the right hon. Member for Leeds Central said, some people choose not to find out whether they carry the gene. Let me look into the hon. Gentleman’s question. I am happy to write to him with an answer.

Research is the key to swifter diagnosis, for those who want to know whether they carry the gene, and to better treatment of Huntington’s, which will ultimately give those who carry the gene the hope of better prospects. Through research, we are making major advances in diagnosing and treating Huntington’s disease. The Government primarily fund research on rare diseases such as Huntington’s via the National Institute for Health and Care Research, as well as through UK Research and Innovation. We have funded £32.6 million-worth of research on Huntington’s disease through those organisations over the past five years. Through its clinical research network, the NIHR has supported 43 studies into the disease over that period, particularly ensuring that scientific breakthroughs can be translated into treatments that will actually benefit patients. An example of that comes from researchers at the NIHR’s biomedical research centre at Guy’s and St Thomas’s NHS Foundation Trust, who have pioneered research on diagnosis of Huntington’s disease. Their work has led to the world’s first genetic test using nanopore-based DNA sequencing technology, which may be able to diagnose even the most complicated cases of Huntington’s disease in a matter of days, instead of weeks.

As part of England’s first rare diseases action plan, published in February this year, we announced £40 million of new funding for the NIHR BioResource, a bank of genetic data that is helping us understand the genetics of rare diseases. That action plan commits us to mapping the rare disease research landscape, so that we can identify gaps and priorities for future research funding. The results of that analysis will be published in the new year. NHS England recently published “Accelerating genomic medicine in the NHS”, a five-year strategy that sets out an ambition to accelerate the embedding of the use of genomic medicine across the health service. That includes continuing to deliver equitable genomic testing for improved prediction and diagnosis of conditions such as Huntington’s disease.

Many Members spoke about the experience of caring for people with Huntington’s, and the challenges involved in navigating the health and social care system. As this rare disease has such a complex range of symptoms, people have to navigate physical and mental healthcare, and of course social care. The right hon. Member for Leeds Central called for a Huntington’s care co-ordinator in every community. The current approach to improving care for people with Huntington’s and other neurological conditions is in the NHS England neurosciences transformation programme, which is identifying and setting out what good care looks like for people with neurological conditions, and what services they need. Those findings will be used to inform and advise integrated care systems on the services that they commission. The ICCs should then commission that range of services for people with diseases such as Huntington’s, who can then better access the support that they need. However, I will take away the right hon. Gentleman’s specific request for care co-ordinators, look into the matter, and get back to him.

The right hon. Gentleman also spoke about NICE guidelines, as did my right hon. Friend the Member for Ludlow and the shadow Minister, the hon. Member for Leicester West (Liz Kendall), and it is true, as was stated in the answer to his parliamentary question, that there is no NICE guideline specific to Huntington’s. In advance of this debate, I looked into that, and the expert view that I have been given is that Huntington’s sits under a recent NICE guideline on a range of neurodegenerative conditions that are grouped together, albeit that we recognise the differences in progression, prevalence and severity of those conditions. That said, I have heard the argument made by the right hon. Member for Leeds Central, and I will ask again about the case for doing something more specific to Huntington’s.

The right hon. Gentleman spoke about symptoms, and about mental healthcare for people with Huntington’s, as did the shadow Minister. The right hon. Gentleman talked about the mental health ramifications of the disease, which are an aspect of it that makes it so distressing and difficult for those who have it and their loved ones. People with Huntington’s should of course receive mental healthcare and support, and the Government are investing in mental health: an extra £2.3 billion per year will go into mental healthcare by 2023-24 to improve access and capacity in our mental health system. That said, I was concerned to hear from him that some people might not be receiving mental healthcare, and might be being excluded as a matter of policy, because of the nature of Huntington’s. I will take that point up with the mental health Minister, my hon. Friend the Member for Lewes (Maria Caulfield).

The right hon. Member for Leeds Central spoke about the Ministry of Defence. I reassure Members that the armed forces do not conduct genetic testing for Huntington’s disease in their medical assessments. That said, I am told that if a candidate knows of a family history of Huntington’s, it is for the candidate to provide medical evidence that they are unlikely to develop the disease in the service. I am aware that the genetics of Huntington’s disease are complex, and that the likelihood of an armed forces candidate developing the disease and the likely age of presentation depend on the number of repeating sections in the gene responsible for it. More repeats cause an earlier age of onset. I am sure that the right hon. Member knows that, as will other experts in the condition. I am told that, if there is clear evidence that a candidate is unlikely to develop Huntington’s disease during a service career, they may, on a case-by-case basis, be considered medically fit for service; however, the right hon. Member made an important point about young people being able to fulfil their dream of serving in our armed forces, and I will take that message to my colleagues in the Ministry of Defence, as he asked me to.

Once again, I thank the right hon. Member for leading today’s important debate, and other Members who spoke in it. I too extend my thanks to the rare diseases community, including carers, clinicians, patient organisations, Huntington’s disease charities across the UK, and the researchers who work tirelessly to improve the lives of people affected by Huntington’s disease and all other rare conditions. It has been very helpful to have this debate. The right hon. Member made specific points that I will take away and respond to. Overall, it is a very good thing that we have shone a light on what people suffering from Huntington’s disease, and their family and friends, are going through. I will do all that I can as the Minister with oversight of this area to make things better for them.

Pancreatic Cancer Awareness Month

Helen Whately Excerpts

Tuesday 8th November 2022 Westminster Hall

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate, and for his work as chair of the APPG on pancreatic cancer. He is right: we should talk about pancreatic cancer; we should talk about how to improve survival rates and diagnosis rates; and we should talk about how we can raise awareness of pancreatic cancer. As we do so—including in this very debate—that in itself will make a difference, and if we do not debate this now, during Pancreatic Cancer Awareness Month, then when? I believe in seizing the moment.

I welcome the speeches from the hon. Members for Strangford, for East Dunbartonshire (Amy Callaghan) and for Upper Bann (Carla Lockhart) and my hon. Friends the Members for Stroud (Siobhan Baillie) and for Carshalton and Wallington (Elliot Colburn), who also seized this moment to speak about pancreatic cancer. The hon. Member for Strangford spoke movingly about Rebecca Buggs, whose children were just eight and nine years old at the time she had surgery. I am very glad that because she was diagnosed early, she was able to have surgery, but we know that, sadly, her experience is the exception not the rule.

The hon. Member spoke about the importance of raising awareness of symptoms such as stomach and back pain, indigestion, unexplained weight loss and jaundice, and the importance of getting those symptoms checked if there is no explanation. He also spoke about research as the key to earlier diagnosis. On one of his questions, I will answer straightaway that, yes, I would be delighted to join him for a meeting with Pancreatic Cancer UK. I will come to his other questions as I go through my speech.

My hon. Friend the Member for Stroud mentioned that she wants to help everybody and, knowing her well as a colleague, I know that that is absolutely true. She also mentioned the catchphrase, “The clue is in the loo,” as mentioned by other hon. Members. She spoke movingly about one of her constituents, a young woman who spent five years going to and from her GP with symptoms, including fatigue and bloating, which brought to life how hard this cancer is to detect. She also talked about the PERT treatment, which I will come to in a moment.

It is very good to see the hon. Member for East Dunbartonshire, a former chair of the APPG, here and to hear her speaking so eloquently in this debate. She spoke about Barbara, a PE teacher, and about the healthy life she lived. Barbara went many times to get a diagnosis, but it took almost 18 months to get one. Again, sadly, that brought to life how hard this cancer is to detect.

I thank my hon. Friend the Member for Carshalton and Wallington for acknowledging the work that the Government have done, particularly on raising awareness for pancreatic cancer. He talked about the importance of the workforce, which I will come to. He also asked me to visit the Royal Marsden, of which he is rightly proud, and which I would be delighted to do.

The hon. Member for Upper Bann spoke about the importance of access to GPs. She called for more funding into research, and said, rightly, that time matters.

I will come to many of the points that hon. Members have raised, but first, I believe in saying it as it is. Nearly 10,000 people a year are diagnosed with pancreatic cancer, and that figure has steadily increased since 2013. Diagnosis rates increase with age, and from the mid-40s onwards pancreatic cancer is more common in men than in women. Just under a quarter of pancreatic cancers are diagnosed at an early stage, so three quarters are not. About 40% of diagnoses follow an emergency presentation. The one-year survival rate is just 27% and the five-year survival rate is only 7.8%. Although those figures have improved in the past 10 years, they are still bleak for anyone who receives a diagnosis and for their loved ones. That is why it is right to talk about pancreatic cancer.

As with many other cancers, early diagnosis of pancreatic cancer is crucial so that there is the opportunity for successful treatment. One of the Government’s healthcare priorities is to improve early diagnosis of all cancers, and to achieve 75% diagnosis at stage 1 or stage 2 by 2028, compared with the current rate of about 50%. We have opened 91 community diagnostic centres, which have carried out 2 million extra scans, tests and checks, including cancer tests. We are rolling out non-specific symptom pathways so that people with symptoms such as weight loss or fatigue are either diagnosed or have cancer ruled out. We are encouraging people to go and get their symptoms checked. The NHS’s “Help Us, Help You” campaign tackles the barriers that prevent some people from getting their symptoms checked, such as fear about what might be found.

The hon. Member for Enfield North (Feryal Clark) talked about waiting times, and I assure her that we are tackling them. This August, more than 19,000 patients saw an upper gastrointestinal specialist, compared with 17,600 last August, and 17% more patients have seen a specialist within the two-week performance standard. That said, I recognise that the NHS is still not hitting the standard for enough people—it is currently 83%, compared with the 93% standard—so we will continue to support the NHS’s efforts to tackle waiting lists and backlogs.

On treatment, credit is due to hard-working NHS staff who have increased cancer treatment levels to 107%, compared with pre-pandemic levels. The cancer drugs fund has helped more than 80,000 patients, and we are investing £5.4 million in five new national clinical audits of cancer, one of which is focused on pancreatic cancer.

As several hon. Members said, the key to making a big leap forward in survival rates for diseases such as pancreatic cancer is research—research into tests that will achieve earlier diagnosis and research into treatments. The Government spend £1 billion a year on health research through the National Institute for Health and Care Research. The NIHR has funded seven research projects for pancreatic cancer since 2019, with a committed spend of about £3.6 million. That is about 5% of the NIHR’s total funding for cancer research, which is over £73.5 million.

[Jim Shannon]

I referred to the fact that Pancreatic Cancer UK has raised £10 million for research every year, and one of its requests is that the Government match that. I thank the Government very much for the £3.6 million that is going to pancreatic cancer, but is it possible for that extra bit of effort to be made and for the Government to match the charity’s £10 million? I do not want to put the Minister on the spot, but I really do think that is an important issue.

[Helen Whately]

I absolutely hear the hon. Gentleman’s request, which is for match funding for the funding contributed by Pancreatic Cancer UK. I will say two things about that. Another function of the NIHR is to support research where the funding comes from other organisations; it already does that. In fact, it has supported 70 pancreatic cancer-related studies that have been funded by others.

The other point, which the hon. Gentleman may be aware of, is that the NIHR does not actually ringfence funding for specific diseases. That is similar to his match funding point. The NIHR is ready to fund research. It looks at applications for funding from the research community and then allocates that funding by looking at the merits of the proposal. We should encourage more bids for funding for pancreatic cancer research and more bids to go into the NIHR, which would then enable it to allocate more funding. I am assured the NIHR stands ready to fund pancreatic cancer research; it is about getting those applications in to carry out that research. I could publish a highlight notice to flag to the research community the importance of pancreatic cancer, which may go some way to achieving what the hon. Gentleman seeks.

My hon. Friend the Member for Stroud spoke about PERT and asked why it is not prescribed for more people. National Institute for Health and Care Excellence guideline NG85 recommends that PERT be offered to patients with inoperable pancreatic cancer, and NICE includes PERT in its quality standard for pancreatic cancer. NICE guidelines do not replace clinical judgment. They are not mandatory; they are guidelines. However, it is clear that PERT should be discussed between a doctor and a patient so a clinical decision can be made. I heard what my hon. Friend called for and I will look into whether there is evidence that such discussions between doctor and patient are not happening.

My hon. Friend the Member for Carshalton and Wallington spoke about the importance of the workforce and, as the daughter of two NHS doctors and a former Minister for the NHS workforce, I agree with him. In essence, the NHS is its workforce, and I am proud that we are on track to achieve our ambition of 50,000 more nurses. Talking specifically about the cancer workforce, the workforce plan published in 2017 set an ambition to increase the workforce by 1,500 full-time equivalents by 2021. That has been achieved and, in fact, exceeded by 226 staff members.

Since then, Health Education England has been taking forward the priorities in the cancer workforce plan, with an additional £50 million of funding in the last financial year and this one. Also, a significant proportion of the elective recovery funding—£8 billion in the next two years—will be spent on workforce, both on capacity and skills. I assure my hon. Friend that, as the Minister with oversight of cancer care, I will look carefully at whether we have the necessary workforce coming on track now and in the future to achieve our ambitions and aspirations for cancer care.

The hon. Member for Strangford and several others asked about the 10-year cancer plan, and I know hon. Members are keen to hear about progress. More than 5,000 individuals and organisations responded to the Government’s call for evidence. The Government are considering the responses and the next steps, so I may have to disappoint some colleagues who may want to know more, because that is as far as I will go today. I assure hon. Members that I know how strongly they and their constituents feel about the matter.

I have welcomed this debate as a chance to talk about all the work going on to improve cancer diagnosis, treatment and survival rates, and crucially, to talk specifically about pancreatic cancer. Not least because raising awareness of pancreatic cancer is, in itself, an important step towards improving people’s chances of survival, raising awareness of the symptoms and, in turn, encouraging people to contact their GP and get themselves checked. I pay tribute to everyone involved in Pancreatic Cancer Awareness Month, particularly to Pancreatic Cancer UK and to everyone taking part, whether that is walking 30 km this month or doing their own thing to raise funds and awareness. I thank them all for what they are doing. In turn, I will do what I can in Government to support all those efforts and to improve the chances for anyone suffering from pancreatic cancer.

Oral Answers to Questions

Helen Whately Excerpts

Tuesday 1st November 2022 Commons Chamber

[Andy Carter (Warrington South) (Con)]

9. What steps he is taking to help move patients who no longer need acute care from hospitals into social care settings.

[The Minister of State, Department of Health and Social Care (Helen Whately)]

When a patient no longer needs acute hospital care, they are usually better off outside hospital and that frees up their bed for somebody else. Delayed discharges are nothing new, but they have been getting worse in part because of the shortage of social care. That is why the Government have announced £500 million to speed up discharges from hospital into social care this winter.

[Andy Carter]

Warrington is at least 90 beds short in terms of step-down care. A local hospital has too many long-term patients who simply cannot be discharged because there is nowhere for them to go. I am told there is capital funding available. We have two local NHS trusts, a local authority and the integrated care board, which is no longer in Warrington but now in Liverpool, but no action is being taken. Will the Minister come to Warrington to meet local NHS leaders and me, so we can secure access for patients who are spending too long in acute hospital care?

[Helen Whately]

My hon. Friend is absolutely right about patients spending too long in acute care in his own hospital. We know this is affecting other people around the country. I am very happy to meet him and I would very much like to visit his hospital and speak to his NHS, the local authority and other stakeholders to ensure we can improve the situation.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

Tony Hickmott is an autistic man who was detained in an in-patient unit for 22 years, often in near total seclusion, against his wishes and those of his parents, Pam and Roy. Tony now has his own home in the community, but the NHS spent £11 million on his detention in the last nine years after doctors considered him fit for discharge. Can the Minister comment on the wasted years Tony and his family spent fighting to get him free? What will she do to release the 2,000 other autistic people and people with learning disabilities detained in in-patient settings who would receive far more effective care in the community?

[Helen Whately]

The hon. Member raises Tony’s individual case, which is very hard to hear about. She and I know there are too many others in this situation. She will know, too, that I listened to this when I was formerly a Health Minister. It is a difficult problem to solve, but we should absolutely continue to work with the NHS, the Care Quality Commission and local authorities to ensure people who are not benefiting from being in in-patient settings are able to get the care and support they need in the community.

[Liz Kendall (Leicester West) (Lab)]

The previous Health Secretary promised £500 million social care discharge funding for this winter, but it is 1 November and not a single penny of that money has been seen. I am afraid that the political chaos and incompetence over the last few weeks means that local services cannot properly plan and thousands more elderly people are trapped in hospitals when they do not need to be, with all the knock-on consequences for the rest of the NHS. Will the Minister now tell us: is this money still available? When will it be released? Can she guarantee that it will be genuinely new funding, not found from cuts made elsewhere?

[Helen Whately]

I am sure the hon. Member heard the answer I gave a moment ago to a similar question. I absolutely acknowledge the challenge of discharges. The challenge is nothing new, but it has indeed worsened, in part due to the availability of social care. That is one reason why the Government have announced the £500 million discharge fund. I am just a few days into this job—[Interruption.] I am looking at the proposals on how this will—[Interruption.] If she will listen, I am looking to make sure that we allocate that money effectively, because we know that money is tight and we must absolutely make sure that every penny of the funding is well spent on improving the discharge from hospital to people’s homes.

[Carolyn Harris (Swansea East) (Lab)]

10. When he plans to respond to the all-party parliamentary group on menopause’s report on the impact of menopause.

--- Later in debate ---

[David Johnston (Wantage) (Con)]

T6.   Last year I raised with the Department worrying data from the Alzheimer's Society about the number of care home residents with dementia who were being prescribed anti-psychotic drugs when they did not have a psychosis diagnosis. Can my hon. Friend provide an update on the current levels of prescribing?

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I have shared my hon. Friend’s concern about this issue in the past, and I know he has taken a long-term interest in it. We must ensure that people living with dementia are prescribed anti-psychotic medication only when it is clinically appropriate., and NHS England is actively monitoring the position. I have already asked for the latest data, and I will be keeping a close eye on it.

[Deidre Brock (Edinburgh North and Leith) (SNP)]

T5. The Secretary of State says that he is boosting GP trainee numbers, but according to the Royal College of General Practitioners, 49% of the more than 40% of GP trainees who are international graduates have reported visa processing problems and 17% are considering leaving the UK altogether, taking their desperately needed skills elsewhere. Why are the UK Government hamstringing the NHS with red tape, and what is the Secretary of State doing to sort this out with ministerial colleagues?

--- Later in debate ---

[Nadia Whittome (Nottingham East) (Lab)]

T9. Care workers were already struggling to get by on wages that hardly pay the bills, and now, with an escalating cost of living crisis, care workers in Nottingham and beyond are being pushed deeper into poverty. Does the Secretary of State back trade union calls for a £15 an hour minimum wage for care workers, and what steps is he taking to make this a reality?

[Helen Whately]

Care workers should be properly paid for what they do, the skills they bring and the compassion they bring to their work. That includes being paid at least the national living wage, which was increased by 6.6% in April. I am also increasing the Care Quality Commission’s oversight of local authority commissioning, and we have created a £1.36 billion market sustainability and fair cost of care fund, which will ensure that local authorities always pay a fair cost of care.

[Stephen Hammond (Wimbledon) (Con)]

Early access to scans and testing can prevent more serious illness, improve health outcomes, reduce health inequalities and reduce pressure on the acute sector. Will my right hon. Friend prioritise increasing the number of diagnostic centres across the United Kingdom and support my campaign for the establishment of one in Wimbledon town centre?

[Grahame Morris (Easington) (Lab)]

As we get older, many of us—individually or our close family and their immediate family—will be touched by cancer. Can the Minister confirm when the 10-year cancer plan will be published in full, and will the Minister agree to meet me and a small delegation from the all-party parliamentary group on radiotherapy to hear more from the experts on the frontline about how we can use this technology to improve cancer outcomes?

[Helen Whately]

Sadly, cancer takes far too many people before their time, and the Government are determined to improve cancer outcomes in the short term and the long term. I am very happy to meet the hon. Gentleman to discuss this further.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

What steps is the Minister taking to improve health outcomes and early diagnosis for people with aortic dissections?

[Helen Whately]

I know that my hon. Friend has a real understanding of this particular challenge. In March 2022, NHS England launched an aortic dissection toolkit to support the implementation of robust clinical pathways to identify and manage type A and type B aortic dissection, and English regions are working with the cardiac pathways improvement programme to improve diagnosis and treatment.

[Dan Jarvis (Barnsley Central) (Lab)]

Tens of thousands of NHS workers are entirely dependent on the use of their car to do their vital job, but while petrol prices have rocketed, NHS mileage rates have remained frozen since 2011. Will the Secretary of State look at what can be done to increase NHS mileage rates?

--- Later in debate ---

[Sir Robert Neill (Bromley and Chislehurst) (Con)]

I refer to my entry in the Register of Members’ Financial Interests. Last Saturday was World Stroke Day. Will my right hon. Friend the Secretary of State commend the work of the Stroke Association and its “saving brains” campaign? And will he meet members of the all-party parliamentary group on stroke to discuss how we can increase the provision of life-saving thrombectomy services across England and Wales?

[Helen Whately]

I am very happy to commend the work of the Stroke Association, and I would be delighted to meet my hon. Friend to discuss this further.

[Dr Rupa Huq (Ealing Central and Acton) (Ind)]

A respected woman pharmacist in my constituency, with a lifetime of NHS experience, went solo with her own practice in the hope and expectation of an NHS licence, which she has been denied. Will the Secretary of State look into the opaque decision-making process? Our increasing population otherwise means increasing demand, and my constituent cannot survive on private alone.

Draft Adult Social Care Information (Enforcement) Regulations 2022

Helen Whately Excerpts

Monday 31st October 2022 General Committees

[The Minister of State, Department of Health and Social Care (Helen Whately)]

I beg to move,

That the Committee has considered the draft Adult Social Care Information (Enforcement) Regulations 2022.

It is a pleasure to serve under your chairmanship, Sir Edward. The draft regulations allow the Secretary of State to impose a financial penalty on adult social care providers that fail to submit information required under section 277A of the Health and Social Care Act 2012, or that provide false or misleading information. In essence, the statutory instrument will ensure that the Government receive a regular, standardised and accurate set of data from providers of social care to give us an up-to-date understanding of how the care system is functioning, what problems are emerging, and where those problems are. That will mean, in turn, that the Government can support providers and the social care system as a whole to serve the care needs of the population.

To give hon. Members a bit of context, at the start of the pandemic it rapidly became clear that the centre was completely lacking in up-to-date information about the functioning of the social care system. For instance, the Government did not know how many people were receiving care, where people were receiving care or where capacity was in the system, and we lacked provider-specific information about the workforce. The Government relied on data mainly captured through aggregate annual returns from local authorities and periodic returns from the Association of Directors of Adult Social Services, supplemented by briefings from the Care Quality Commission, for instance on the state of care, and from Skills for Care on the workforce. But by the time we received that sort of information it was of little use for responding to situations on the ground. However, there was a real-time source of data known as a capacity tracker, which enabled providers to share information about their bed vacancies.

Taking a pragmatic approach to the immediate situation, I decided that we should build on the capacity tracker, and use it to collect the information that we desperately needed to give us a picture of the frontline of social care. We worked with the care sector to develop the set of data collected through the capacity tracker to give us near-real-time data about what was happening on the frontline of the system—adding, for instance, metrics on the numbers of people receiving care, workforce absences, covid testing, vaccination rates, and access for visitors. During the pandemic, completion of the capacity tracker was voluntary, albeit tied to the receipt of funding from the infection control funds distributed to care providers. It provided an enormously valuable source of data and insights, enabling the Department of Health and Social Care to focus attention and resources where they were most needed.

Since the pandemic, most providers have continued to complete the capacity tracker, which has continued to be a valuable source of data, but with the ending of the infection control funds completion rates have declined. That is why we have taken steps to put provider data collection on a sustainable long-term footing through new powers inserted by the Health and Care Act 2022 into the Health and Social Care Act 2012. The Secretary of State now requires registered adult social care providers to submit data through the capacity tracker tool. Recognising that data collection can be onerous for care providers, we have always tried to strike the right balance between asking for important data and avoiding imposing a disproportionate burden. Specifically, in making this data collection mandatory, we have reduced its frequency from weekly to monthly, and we have removed data fields when the information was no longer critical.

Through the 2022 Act, the Government can now require that information from providers. Today’s legislation will enforce that requirement through financial penalties that have been developed to ensure that the mandation of the data submission is both effective and proportionate. The draft regulations cover the amount of the penalty, the service of notices, a right to make representations, and a right to appeal to the tribunal. The draft regulations set out that the penalty will be the same as a provider’s Care Quality Commission registration fee, which is scaled according to provider type and size.

It is the Government’s intention that the enforcement should be used only as a last resort. A notice of intent will be given before imposing a penalty, and the provider will have a right to make representations on why it should not be imposed. Thereafter, a final decision will be taken; if it is decided to impose a penalty, a final notice will be given. The provider will then be able to appeal to the first tier tribunal. There is also provision in the draft regulations for notices to be withdrawn and for the recovery of financial penalties in the county court, and a duty to review the regulations every five years.

We need the draft regulations because we need to be able to enforce the information duties created by the Health and Care Act 2022. The Act inserted new section 277A into the Health and Social Care Act 2012, to enable the Secretary of State to require information from regulated providers of adult social care services about themselves, their activities and persons to whom they have provided care. New section 277E allows us to enforce that duty to provide information through the imposition of financial penalties. We hope—and very much expect—compliance to be the norm so that financial penalties are not required. However, a deterrent is important, and the draft regulations provide the powers to impose financial penalties if needed.

The Government’s priority is to support providers to share their data wherever possible. The data required will be proportionate and providers will normally be given three months’ notice of any changes to data requested, unless there are extenuating circumstances. Financial penalties are normally a last resort, for when a provider continues to be or is persistently in breach of their data obligations, despite multiple offers of support from our delivery partners.

In our data strategy, the Government have set out our vision of how data will be used to improve the health and care of the population in a safe, trusted and transparent way. Our ultimate goal is to have a health and care system that is underpinned by high-quality, readily available data, which is collected and shared appropriately with those in the sector who need it. That will improve adult social care commissioning practice and outcomes for people who are receiving care, and provide greater oversight of the sector.

--- Later in debate ---

[Helen Whately]

I thank the hon. Member for Denton and Reddish for his welcome and his comments about this legislation; I am glad to hear that he considers it sensible and that the Opposition will not oppose it. I agree that it was striking that there was not a comprehensive dataset before the pandemic. I am glad that he sees the scaling of penalties as common sense and that he supports appropriate sharing with local authorities and integrated care boards.

The hon. Gentleman talked about the intention to improve accessibility for care providers. We absolutely want to do that as well as to link to other data sources, to ensure that multiple organisations such as the Government, the Care Quality Commission or local authorities are not asking care providers for similar but slightly different data. That would clearly not be helpful: the more we can have an “ask once” common dataset, the better. That is what we will work towards.

I am but a few days into this particular job as Health Minister, so I cannot give the hon. Gentleman the comprehensive update that he asked for, but I look forward to doing so on a future occasion. He also asked about the extent to which the data would be publicly available. The capacity tracker dataset is already published monthly. I share with him the objective of transparency; when I was care Minister previously, I worked hard to ensure that we could share the data and be transparent about what we need. I am committed to ensuring that we continue to make the data publicly available—at an appropriate level, clearly: we would not want any adverse or unintended consequences. Transparency is, as the hon. Gentleman says, very important.

In conclusion, the Government want to build a better picture of adult social care services across England so that at local, regional and national levels people in the sector have the information that they need and can use it to help them provide higher quality care and support to those who need it. For too long, very little information has been shared across the sector and there has been limited standardisation of how data is collected, shared and used. We now have the opportunity to resolve the issue. The draft regulations will ensure that we get vital information from all registered adult social care providers and that when providers do not make good on a request for data or do not have a reasonable excuse for not doing so, they are held to account. I commend the regulations to the Committee.

Question put and agreed to.