Patient Data: Research
Lord Kamall Excerpts(2 months ago)
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Lord Kamall (Con)
My Lords, I thank the noble Lord, Lord Patel, for securing this debate on using patient data for patient-centred research, health and social care. I also thank all noble Lords who spoke and refer the House to my interests in the register—I will not name them all, because that would be the rest of my three minutes.
We can have the most innovative healthcare systems in the world, but that will be meaningless if patients do not trust the NHS and other health and social care providers with their data. There is some consensus on the need to collect and share patients’ data to improve patient care and research, not only for today but for the research that will drive the innovation of tomorrow. Currently, not all patient data is digitised or shareable. Records do not always follow the patient. Information is often duplicated, delayed or not available when most needed. Although we hope that the single patient record and Health Data Research Service will respond to that challenge, the key will be patient trust.
First, recent events that have been mentioned, such as the UK Biobank incident, have shown how fragile public confidence can be when governance and, outside that, cyber security, are not watertight. How does the Minister’s department intend to address the problem of researchers downloading patient data to work in less secure environments, sharing it on sites such as GitHub, or even perhaps selling or offering to sell it—they did not actually sell it—as we saw? Secondly, can the Minister tell the House whether organisations and individuals accessing patient data for research will be required to meet minimum cyber security standards? Thirdly, how will they address the concerns of civil liberties organisations such as medConfidential, which have found UK Biobank’s response less than reassuring? At this point, I should also thank the noble Lord, Lord Tarassenko, for his reassuring points on that particular incident.
Nowhere is the need to get this right clearer than in dementia, as the noble Baroness, Lady Murphy, said. It is the leading cause of death in the UK, affecting individuals, families and the economy. A recent Alzheimer’s Research UK report tells us that the UK has world-class medical science, major data resources, early-phase trial capability and a trusted regulatory environment, but that progress is constrained by weaknesses in data co-ordination and implementation. Without high-quality data and interoperable systems, researchers and clinicians cannot identify patients early, recruit them into trials, evaluate new diagnostics or scale treatments across health and social care. This is not a technical detail; it is a foundation on which meaningful progress to diagnose and treat dementia will stand or fail. Will the Minister tell the House whether her department has considered how to connect existing initiatives so that dementia data is linked, accessible and usable for research?
Real progress will depend on confidence: from clinicians that systems help rather than hinder, from patients that their data is secure, and from the wider public that data governance is transparent, proportionate and accountable.
Funeral Directors: Regulatory Regime
Lord Kamall Excerpts(2 months ago)
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Baroness Merron (Lab)
My noble friend endorses the point that I made earlier, which I know the House recognises: that the majority of funeral providers, even within the current set-up, are providing a first-rate service that encourages trust as well as respect and service. However, because of these terrible circumstances, we have to act to protect people. I say to my noble friend that we are working very closely with funeral providers to get it right, so that they can do the work they need to do without undue burden, but with protection for those whom they are working for.
Lord Kamall (Con)
My Lords, I associate these Benches with the comments that were made about the poor people and their families who had to suffer in Hull. The most reverend Primate spoke about the impact on local communities and how legislation should consider costs. Given this, do the Government intend to ensure that smaller independent funeral directors—most of which, as the Minister said, do an amazing job in helping families through a very difficult time of bereavement, and which serve many of our communities with great care—are properly involved in shaping these reforms, and that it is not just the bigger companies and organisations that are involved? What steps will be taken to guarantee that any new requirements are proportionate and do not place unsustainable extra burdens on providers, while of course avoiding a repeat of the scandal that we saw in this case?
Baroness Merron (Lab)
This is the way that we are conducting ourselves. It would be a bit premature to draw conclusions on any funding requirements—we are, of course, talking about private businesses. However, we are looking—as we always do, but particularly in this area—at the costs, benefits and the impacts of different approaches before decisions are taken. Within that, we are working with the full range of funeral providers and not just the large funeral providers.
NHS: Agency Medical Staff
Lord Kamall Excerpts(2 months ago)
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Baroness Merron (Lab)
I will certainly take away the points that the noble Lord raised, but I do not recognise his description of reshuffling, not least because the requirements on local health providers to reduce agency expenditure are quite clear. They have to report against them and drive further reductions. Those moneys are directed into front-line care. After all, that is what we all want to see.
Lord Kamall (Con)
My Lords, I thank my noble friend Lady Davies for raising this important point. I will touch on a number of issues that have been drawn together. Within the NHS, there are three very different categories of non-permanent staff—agency, bank and temporary staff—each with different implications for the continuity of care, as my noble friend referred to. Given that agency staff are supplied externally, bank staff are supplied from the trust’s own books and temporary staff are moved between services, can the Minister tell the House whether her department monitors the impact of each of these differences on the continuity of care for patients, including whether patients can see the same doctor, if possible? If so, where is that data available?
Baroness Merron (Lab)
The noble Lord has welcomed our emphasis on the continuity of care. It is the best form of healthcare that we can offer. The only way to do that properly is through an established NHS workforce. The reality is, as noble Lords will be very aware, that there are times that we need to use some type of temporary cover in order to secure patient safety. The main thing is that we are committed—and it will be delivered through the workforce plan—to a more settled workforce and a workforce that can properly provide the care that we need. We are not yet in that place, but the steps that we are taking will get us there.
Integrated Care Boards: Access to Services
Lord Kamall Excerpts(2 months ago)
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Baroness Merron (Lab)
My noble friend makes an important set of observations. I can reassure your Lordships’ House that reducing inequalities is absolutely hard-wired throughout our renewed women’s health strategy. For example, we are redesigning clinical pathways for the most common women’s health conditions, and that will standardise and improve care across the country.
Lord Kamall (Con)
My Lords, when I speak to primary and community health providers, they often speak of two hierarchies that they face. At the ICB level, they say that large trusts dominate, whereas at the primary care level, they say that it is GPs who dominate, often at the cost of the voices of pharmacists, dentists and optometrists, who can take on more work, as the noble Baroness, Lady Pidgeon, said. Underneath all these clinical hierarchies sit patients, who in some ICBs struggle to be heard. Given that the Government’s plans to rewire the state include abolishing local Healthwatch organisations, how will they ensure that independent patient voices—and I mean independent, not part of DHSC or from local authorities—are listened to and acted upon at all levels?
Baroness Merron (Lab)
The patient’s voice is absolutely key, and that is why the Health Bill, which is currently in the Commons and will be introduced in your Lordships’ House tomorrow, is very focused on that. There will be much discussion in here. I can assure the noble Lord that patient safety, patient voice and patient experience are absolutely key, and that will be the case as we move forward to develop and further improve the NHS.
Neighbourhood Health Services
Lord Kamall Excerpts(2 months ago)
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Baroness Merron (Lab)
As we develop neighbourhood provision, bring care closer to home and join up as the noble Lord suggested, it is key that the regulatory framework supports that as well as all the other work. We are ensuring that the regulators are able to do that. Dr Penny Dash recently did a review and we are looking at what more needs to be done.
Lord Kamall (Con)
My Lords, I thank my noble friend Lady Maclean for the Question, but I want to go back to points made by the noble Baronesses, Lady Pidgeon and Lady Gerada. Successive Governments have spoken about the shift from hospital to community, but one reason it has not always happened is that there has not been a commensurate or corresponding shift in the funding. I therefore ask the Minister once again: what consideration are the Government giving to rebalancing existing funding—I stress “existing”—to deliver that shift from hospital to community?
Baroness Merron (Lab)
First, we are investing where it is needed, particularly on new estates and on improvement support. We are also asking ICBs to refocus their existing resources. This is not just tinkering; it is a fundamental shift—one of the three main shifts—to deliver neighbourhood health, which people very much welcome. We are also creating financial incentives. We are creating—the national evaluation will assist us more with this—funding flows and payment mechanisms, which means that savings from improved quality of care will then go into investment in new services. I say to the noble Lord that that has not always been the case in the past.
Childbirth-related Post-traumatic Stress Disorder
Lord Kamall Excerpts(2 months, 1 week ago)
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Baroness Merron (Lab)
I certainly will take that on board. I completely agree that this is not a new issue, but the report shines another light on the situation. I can confirm to my noble friend that I have specifically said that early identification of issues is crucial. Yes, there is a six-week to eight-week follow-up point, but I know—and many noble Lords will be aware from their own experience in their communities and families—that it is very variable how appropriate, good and effective that is. It is not acceptable that we have such a wide range, so I will focus very much on making those improvements.
Lord Kamall (Con)
My Lords, I will focus on two concerns. The first is that GPs often mistake PTSD for postnatal depression, meaning that mothers do not get the appropriate treatment. The second is that at the six-week postnatal check-up, to which the noble Baroness referred, there is no approved framework for assessing women’s risk of having PTSD. As the responsible Minister, what conversations is she having with NHS England and GP organisations to make sure that these two issues are addressed?
Healthcare Sector: Clinicians
Lord Kamall Excerpts(3 months, 3 weeks ago)
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Baroness Merron (Lab)
I certainly agree with that, because there are many aspects to this. On the successes of the clinical entrepreneur programme—some of which I have mentioned—we now know that, as of June, that over 10,500 occurrences of innovation are being adopted by organisations. That has resulted in the creation of over 5,100 jobs, and 448 NHS staff have been retained by, or have returned to, the NHS to be part of the programme. This is an extremely active area that will greatly contribute to services for patients: better care and safety, as well as tackling waiting times.
Lord Kamall (Con)
My Lords, can I ask about entrepreneurs who are not clinicians but have a product or service that could improve health or social care? For them, there is no obvious front door to the NHS, so they spend ages trying to get into the system at primary care, trust or ICB level, and, sadly, some give up or go abroad. Could I suggest that the new Minister for Technology and Innovation, when they are appointed, creates a front door or one-stop shop to triage those who approach them? They could distinguish between salespeople with no real product, those who have a product but need more support, and those who have a fantastic product that could save lives now and that we could pilot as quickly as possible. Can the Minister make that suggestion to the new Minister for Technology within health?
People with Learning Disabilities: Acute Illness
Lord Kamall Excerpts(3 months, 3 weeks ago)
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Baroness Merron (Lab)
There are a number of aspects to that area. We have greatly increased the mandatory training requirement and the numbers who have been trained. The noble Baroness also points to the importance of a multidisciplinary approach. We have seen an increase in nursing staff in that regard. It is a matter for the local provider to decide, but the workforce plan, which we will be seeing soon, will be very helpful in this regard.
Lord Kamall (Con)
My Lords, the report identifies significant variation in the recognition and treatment of acute illness among people with learning disabilities. The Minister talked about guidance, but could she be more specific? What specific help does her department aim to give to those areas, trusts or ICBs deemed to be underperforming? Given the new Prime Minister’s pledge on further devolution, how will the department resolve that tension between local decision-making and central government intervention, especially in underperforming areas?
Baroness Merron (Lab)
That is the reason for the accountability measures that I have outlined. I should add that transparency is absolutely key to that. The guidance that we have issued about supporting the identification of people with learning disability is important; we are at that basic level. That is where we have started, but it will push this forward. Further to my answer to the noble Baroness, Lady Finlay, the guidance for acute hospital staff, for example, included standardised mental capacity assessment forms; they were not in place previously. Each ICB is required, via statutory guidance, to have an executive lead on learning disability and autism.
Modern Service Framework for Dementia and Frailty
Lord Kamall Excerpts(4 months ago)
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Lord Kamall (Con)
My Lords, I, too, thank the noble Lord, Lord Weir of Ballyholme, for securing this important debate. I also thank all those who sent us briefings, as well as all noble Lords who have spoken in this debate.
Dementia remains one of the greatest health and social care challenges facing our country. As the noble Baroness, Lady Pidgeon, rightly said, and as other noble Lords agreed, dementia is said to be the leading cause of death in the UK, with nearly 1 million people in the UK currently living with dementia, a figure that is expected to rise significantly over coming decades as our population ages. As the noble Lord, Lord Weir, said, this is a condition that touches most, if not all, families. My noble friend Lady Wyld spoke movingly about her experience. I have started to experience it in my own family because my mother is in the early stages; I have to fly over every so often to give her some sort of respite, as it were.
That demonstrates that behind every diagnosis is not only the individual but their families, their friends and their carers, whose lives are profoundly affected. As my noble friend Lady Wyld said, it calls for a whole view of the person as much as a whole view of the system. Against that backdrop, I think we all welcome the modern service framework and see it as an important opportunity. However, for it to succeed, it must do more than simply list aspirations. It must provide a practical road map on, first, improving diagnosis, secondly, strengthening the evidence base, and, thirdly, ensuring that the NHS and other healthcare providers are prepared to adopt new innovations as they emerge.
If we look at the current state of diagnosis, we find that around one in three people living with dementia remains undiagnosed. Even when someone receives a diagnosis, the precise type of dementia—such as Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia or any other rare type of dementia—is often unspecified. That makes a huge difference because it helps you determine the most appropriate treatments. How can you do that if the type of dementia is not diagnosed?
Early diagnosis not only allows patients and their families to plan and access support sooner; thanks to the continuous advances in research, about which noble Lords have spoken, it will allow patients to access treatments that could possibly slow disease progression. Can the Minister tell us how the modern service framework will support more consistent diagnostic pathways across England? Given the significant regional variation that currently exists, how will resources be targeted to those areas with lower dementia diagnosis rates? What role does the Minister’s department see community diagnostic centres, neighbourhood health centres and primary care playing in this early diagnosis?
I turn to the evidence base, which is the crux of the Question from the noble Lord, Lord Weir. It refers to
“robust and acceptable clinical data and performance metrics”,
which will be key to improving prevention, diagnosis and treatment. Without good-quality, consistent data, we cannot know whether patients are receiving appropriate care, where services are improving or where additional support is needed. Can the Minister tell the Committee how the modern service framework will establish a consistent national approach to collecting dementia data? Will it include meaningful outcome measures that reflect patients’ experiences as well as clinical activity? How will that data be used to drive improvement, rather than being simply about reporting requirements?
I turn to innovation. As other noble Lords have said, we are entering a transformative period in dementia research. Scientific understanding has advanced considerably in recent years, with disease-modifying treatments emerging and more therapies under investigation. This gives us cause for some optimism, particularly when it comes to prevention. Growing evidence suggests that around 45% of dementia cases may be preventable or delayed by addressing modifiable risk factors. Given the mantra “from sickness to prevention”, with which all noble Lords would agree, can the Minister explain how the modern service framework will embed brain health and dementia prevention across our system of healthcare, whether through NHS health checks or other public health initiatives? It would be useful for us to know which particular initiatives will play a role.
As the Minister will be aware, preventing or delaying dementia where possible would improve quality of life for individuals. It would also reduce pressure on not only them and their families but our systems of health and social care. Can the Minister explain how the modern service framework will prepare the NHS, first, to adopt new diagnostic tests and innovative treatments as the evidence develops; and, secondly, to try to reduce those delays as much as possible while maintaining safety?
We know that innovation is driven by research. The Secretary of State has accepted the recommendation of the noble Baroness, Lady Casey, to increase participation in dementia clinical trials to 2,000 people over the next few years. That is welcome but, as other noble Lords have said, participation in dementia research remains strikingly low despite the growing number of clinical trials now under way internationally. I was very much struck by the comments of the noble Baroness, Lady Nargund, who spoke about the underrepresentation of women in clinical trials. We must also do more to understand the links between dementia and other conditions, which are interesting; one mentioned by the noble Baroness is that between the menopause and dementia. Can the Minister say how the Government intend not only to achieve the target of 2,000 trialists but to create a generally research-ready, research-led system of healthcare?
The UK is already a leader in some areas of health research, but, in recent meetings with life sciences companies, I have heard some of them talk about how much more difficult it is becoming to conduct clinical trials in this country. The UK is still a leader, but we must always look behind us as well as looking ahead because, clearly, there are some concerns among life sciences companies. If the United Kingdom is to realise its ambition of becoming a world leader in dementia research, participation in clinical trials cannot be viewed as an optional extra; it must become an integral part of high-quality dementia care.
While we are here, I ask the Minister for her views, as the noble Lord, Lord Weir, said, on NICE’s health technology assessments, including whether there is a way in which we could start to consider the contribution that a treatment could make to society and others. I understand that we had a separate debate and that there were some concerns from the Government, but I would like to hear the Minister’s views on this.
The challenge of dementia extends far beyond healthcare alone. It affects social care, housing, research and innovation, and it is itself affected by these factors. At the human level, it affects not only the individual but their families every single day. The modern service framework is an important opportunity to ensure that our health system is ready for the remarkable scientific advances that are beginning to emerge.
I realise that, in my usual Socratic way, I have asked the Minister many questions, some of which will be answered today, and others which she will diligently respond to in writing. But the gist of all these questions from me and other noble Lords is to remind her that the framework will be judged not simply by its ambitions but by whether research gives us better understanding of prevention and treatment. It will be judged by whether more people receive an earlier diagnosis and gain faster access to innovative treatments—and by whether people in England diagnosed with or at risk of dementia will one day be able to live longer lives in good health.
National Maternity and Neonatal Investigation
Lord Kamall Excerpts(4 months ago)
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Lord Kamall (Con)
My Lords, I thank the Minister for the Statement and the noble Baroness, Lady Amos, and her team for the thoroughness and compassion with which they have conducted this important investigation. Above all, our thoughts must be and are with the women, babies and families whose experiences lie at the heart of this report. Many have had to revisit the most painful moments of their lives when some want to simply move on. But after years of fighting, they must be heard. Their courage, dignity, determination and persistence place a responsibility on all of us in this House. We owe it to them not simply to listen, but to ensure that their experiences finally lead to lasting change.
Only last week the House considered Donna Ockenden’s devastating findings in Nottingham. Here, the noble Baroness, Lady Amos, presents us with a wider national picture. Once again, we see the same troubling themes emerge—women whose concerns were dismissed, staff who felt unable to speak up, inequalities that remained unchallenged, and organisations that failed to learn from previous mistakes. As Donna Ockenden herself observed, much of what is contained in this report is sadly already known to us, as it was to Governments of all political colours in previous years. That is perhaps the most disturbing and sobering conclusion of all.
The challenge before us is no longer one of evidence. We have had inquiry after inquiry, report after report and recommendation after recommendation. The challenge now is implementation. Families have every right to expect that this report will become the catalyst for sustained improvement across maternity and neonatal services. I am sure that all noble Lords welcome the fact that work is beginning immediately in a number of critical areas, including maternity triage, tackling discrimination, strengthening staffing and addressing urgent estate risks. It is right that today’s expectant mothers be given assurance and reassurance about what will change immediately, not only at the end of the year when the wider plan is due.
A few outstanding questions arise from the Statement. First, can the Minister update the House on the timetable for the Leeds and Sussex reviews? How will the Government ensure that concerns which have already been identified in those services are acted on before these reviews conclude? Secondly, it is welcome that the Secretary of State will publish the new maternity triage standards next week, but by when does the Minister expect every NHS trust to have implemented these standards and will Parliament receive regular updates on trust-by-trust progress so that families can see that improvements are generally being delivered? Thirdly, the Government propose establishing a statutory maternity and neonatal commissioner. Can the Minister explain what powers the commissioner will have to hold trusts, regulators and national bodies to account? How will local leaders remain accountable for the safety of the services that they are supposed to oversee?
The additional midwifery posts announced today are also welcome, but the report from the noble Baroness, Lady Amos, like those before it, identifies workforce pressures as a fundamental challenge to safe maternity care. Do the Government intend to address this issue immediately, or will we have to wait for the long-awaited workforce plan? If it is the latter, can the Minister update the House on when it will be published and whether it will specifically address maternity and neonatal services? I can understand her perhaps raising an eyebrow here, as she rightly and persistently challenged me on this when I was a Minister in her place.
Since the report’s publication, concerns have been raised by Dr Bill Kirkup about the removal of references to so-called normal birth ideology from the final report. Previous maternity inquiries have identified this as a contributory factor. It would not be fair of me to ask for comment on the editorial process, but can the Minister reassure the House that all relevant evidence—including from Morecambe Bay, which found that midwives were pursuing normal birth at any cost—will be fully considered?
Finally, the Secretary of State is right that culture lies at the heart of this challenge. Often, while policy changes and restructures are visible, it can be more difficult to bring about cultural change. Where the Government act with the urgency that this report demands, they will have our support. However, women and families will judge today’s Statement not by new structures, new titles or another report, but by what happens when a woman says that something is wrong. Is she heard? Are warning signs acted on? Is help from senior colleagues available when needed? Are maternity units safely staffed and can staff speak up without fear? Do families receive honesty and compassion when harm occurs? Above all, are we reducing the number of mothers and babies coming to harm?
Families have told their stories. The evidence is clear. We will support and, where appropriate, challenge the Government and the NHS as they seek to bring about this much-needed change. The Minister in the other place has made a good start, and we hope to see further progress.
Baroness Pidgeon (LD)
My Lords, this is another week and another traumatic and difficult-to-read report about the state of maternity services. Behind it are thousands and thousands of women and families deeply affected by these service failures. I thank them all for their contributions to this report, as well as the noble Baroness, Lady Amos.
Women are not being listened to, heard or believed, with serious consequences for safety and quality of care. Racism and discrimination are embedded throughout the maternity and neonatal system. Services are not responsive to the changing profile of women giving birth and the increase in medical interventions during birth. Antenatal, birth and labour, neonatal and postnatal services are just not joined up. From Somerset to Blackpool, the safety of having a baby has become a lottery. Women are silenced and staff who raise the alarm on unsafe care or systemic discrimination are crushed by a culture of fear. We need to see genuine accountability throughout the NHS and the investment necessary to make Britain the safest country in the world to have a baby.
I have a number of questions for the Minister. I welcome the Government’s commitment to a national maternity commissioner, but can the Minister confirm that this post will go to an independent expert and not a political appointee? Will the Minister reassure us that action will be taken before December, rather than waiting for the taskforce to report on its plans? Will the Government guarantee safe staffing at all hours in every maternity ward in the country, so that no woman has to give birth in an unsafe unit?
This inquiry has, once again, raised the issue of poor bereavement support across the NHS after pregnancy or baby loss. The national bereavement care pathway seeks to resolve this by ensuring high-quality and consistent bereavement care across the UK. The trauma of baby death and pregnancy loss can last a lifetime. Parents’ memories of the care they receive at that moment will stay with them for ever. Good bereavement care can help parents and families navigate their bereavement journey, while poor care can just add to the trauma of loss.
The first moments after a baby dies can be the only opportunity parents have to make memories with their baby, and there is only once chance to get this right. After a baby dies, parents often face really tough decisions, and they cannot make informed decisions about their baby without clear and compassionate communication from healthcare professionals. I therefore ask: will the Government roll out all five national bereavement care pathways, including for miscarriage, and actively monitor implementation across the health system? Will they ensure that suitable bereavement rooms are available in all trusts, not as a “nice to have” but as part of dignified trauma-informed care? This would be a step change for so many families.
There is so much more I could say on a topic that has shocked us all. All families, wherever they live and whatever their ethnicity, must be supported to have their babies safely. This has clearly not been the case for too many years. This is the point where things must change, and I really look forward to the Minister’s response.