Terminally Ill Adults (End of Life) Bill
Paul Kohler Excerpts(3 days, 12 hours ago)
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Mr Paul Kohler (Wimbledon) (LD)
Let me begin by laying my cards on the table. I am, of course, a liberal and have always supported the right of individuals to choose freely when they want to end their life. I have no religious or philosophical objection to assisted dying, and when the debate on the Bill began, I assumed I would vote in favour of it. However, as the debate in this Chamber on Second Reading progressed, and in particular as a result of the compelling speeches by the hon. Members for Vauxhall and Camberwell Green (Florence Eshalomi) and for City of Durham (Mary Kelly Foy), and in particular from the Mother of the House, the right hon. Member for Hackney North and Stoke Newington (Ms Abbott), I came to the reluctant decision that the state of palliative care in this country and the safeguards against coercion in all its forms were not sufficient to vote in favour of the Bill. Despite the changes in Committee, my mind has not changed. I will again be voting against the Bill.
However, let me be equally clear that amendments 103 and 104, in my name and to which I will now speak, are not wrecking amendments, but critical to ensuring proper parliamentary scrutiny if the Bill becomes law.
Iqbal Mohamed (Dewsbury and Batley) (Ind)
The issue of palliative care has been raised across the House. We have been repeatedly told that this is not an either/or choice, but does the hon. Member agree that without world-class palliative care, that will force some patients down the assisted dying route, where otherwise they would have chosen better care?
Christine Jardine
I thank my hon. Friend for giving way. I share with him concerns about the level and quality of palliative care in this country. However, I do not agree that giving people the choice to end their life, if they are terminally ill and have been diagnosed as dying shortly, in any way undermines our ability as a House to insist on an improvement in palliative care. What is more, statistics from other jurisdictions show that once given that choice, people often turn to palliative care.
Mr Kohler
I thank my hon. Friend for her intervention. Giving people a choice when they look on the internet and see how awful their death might be because of the shocking state of palliative care is not a free choice.
This is an extraordinary Bill. It has 55 clauses and 38 regulation-making powers, of which five are Henry VIII powers—in other words, powers to modify primary legislation. As Ruth Fox of the non-partisan Hansard Society, which is absolutely neutral on assisted dying, made clear, there are lots of powers in the Bill conferred on Ministers. Why is that a problem? Lord Hermer KC, the Attorney General, in his Bingham lecture last year, puts the point as follows:
“Henry VIII clauses…upsets the proper balance between Parliament and the executive. This not only strikes at the rule of law…but also at the cardinal principles of accessibility and legal certainty.”
I am afraid the Bill is an example of such excessive reliance. That is a major problem because in large part the safeguards are left to be decided by regulations. What level of qualification and training will doctors need to have? How will mental capacity be assessed? Who can be a proxy? What happens if the self-administration of drugs goes wrong and a person suffers complications but does not die? When pressed on the key safeguards and key issues, supporters of the Bill say that they are problems that can be approved later.
The same goes for how the Bill will actually be delivered. Will it be delivered by the NHS, and if so, how? Will private providers be commissioned, and if so, how, by who and on what terms? Will for-profit providers be allowed? All those questions go unanswered by the Bill. I had hoped that they would be answered in Committee, but they were not, and instead we got even more reliance on delegated powers.
First, that means that MPs cannot make a judgment about assisted dying and how it will work in practice. On training, for example, MPs might assume that the training provided will be a robust two-week course on assessing coercive control, but there is no such requirement in the Bill. Indeed, the impact assessment suggests that it would be a short course. Secondly, regulations cannot override statute and are ultimately bound by it. While it might be reassuring that a code of practice must be issued to take into account how depression can impair a person’s decision making, as the Royal College of Psychiatrists recently reminded us, that does not change the fact that impaired judgment does not mean that someone lacks capacity. Thirdly, leaving all those matters to be considered by guidance and regulations places them outside the democratic control of MPs. With limited exceptions, we will not get a vote on those regulations, and will have no input, directly or indirectly, in formulating them.
The case for the defence might be that reliance on such guidance and regulations is inevitable with a Bill of this complexity, but the experience of other common law jurisdictions suggests that that is not the case. In Victoria, the first Australian state to legalise assisted dying, there are only 20 pages of regulations and much more has been included in the Act, which is necessarily longer than the Bill before us. That is a good thing, as it means more parliamentary scrutiny.
I wholly understand why it was not possible for the hon. Member for Spen Valley (Kim Leadbeater) to draft a Bill as detailed as the Australian Act before Second Reading, but I had hoped that with the help of Government resources, those gaps would have been filled in Committee and on Report. Sadly, that is not the case. [Interruption.] I had much more to speak about, but heeding your cough, Madam Deputy Speaker, let me say clearly that I will vote against the Bill, but even if Members disagree with me, they should please vote for my amendments.
Rachel Taylor
I begin by thanking my hon. Friend the Member for Spen Valley (Kim Leadbeater) who has exemplified the integrity and transparency that we need in public service.
I will speak about amendments 82 to 86, which were introduced by the right hon. Member for Salisbury (John Glen) earlier, because as a former lawyer, they concern me. In Committee, the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green (Sarah Sackman) was clear that the panel’s decisions will be subject to public law principles. That will include procedural propriety and an absence of bias, including the appearance of bias. My concern is that the panel is deliberately designed to be inquisitorial. It is intended to collect information; it is not meant to be adversarial like a court.
Women’s Health
Paul Kohler Excerpts(3 months, 2 weeks ago)
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Mr Paul Kohler (Wimbledon) (LD)
It is a pleasure to serve under your chairship, Dr Huq. I thank my former colleague on Merton council, the hon. Member for Hastings and Rye (Helena Dollimore), for securing this important debate. As the proud father of four daughters—the solitary man in a family of six—I am acutely aware of the inequalities between the sexes when it comes to health provision. The evidence is clear: our health system does not accord women equal priority to men. Their health issues are often ill researched and underfunded, with women more likely to be misdiagnosed and undertreated for pain, and have their symptoms dismissed.
From a lack of research funding into women’s specific health conditions to medical textbooks using many more images of men, women’s health is often marginalised. Women regularly report feeling unheard by doctors. Surveys have found that over 80% of women report not feeling listened to by healthcare professionals, with their symptoms being dismissed. As a constituent recently told me,
“Every woman I know has a story of their pain not being taken seriously.”
That is simply not acceptable. As time is short, I will focus on two issues that I know are key for my constituents and my immediate family.
My constituency of Wimbledon has a particular concern around the levels and availability of breast cancer screening. Breast cancer is the most common cancer in the UK, with one woman diagnosed every 10 minutes. Every year in the UK that leads to, on average, 11,500 deaths. It is, however, one of the most treatable cancers if caught in its early stages, as I saw with my wife Samantha, who was diagnosed and successfully treated almost a decade ago. Breast cancer is a disease where screening programmes work and are cost-effective.
In Merton, however, where most of my constituency lies, there are genuine concerns about the effectiveness of the screening programme, with more than 40% of eligible women failing to attend when invited. That is partly due to the fact that Merton is one of the only boroughs in London not to have a specific breast screening cancer centre, despite its being recommended by NHS reports a number of times. I acknowledge that that is being worked on, as is the potential for using a mobile screening unit in the meantime, but there is still no firm commitment. Each day’s delay means more breast cancer going undiagnosed and women’s lives being jeopardised.
Finally, as it is Eating Disorders Awareness Week, I would like to focus on how this terrible disease impacts women, as women, particularly young women, are at the highest risk. As my wife and I have seen in our own family, those who take the often difficult step of reaching out for help are too often told that nothing can be done—that they are not ill enough to be treated as the resources are not there—with an underlying message that they should starve themselves more and wait until they are thinner. They will not be taken seriously until their condition has deteriorated further, at which point it is of course more dangerous, more damaging, more difficult, and more doubtful whether they will ever recover, as eating disorders have the highest mortality rate of any mental illness.
I have focused in my speech on the two aspects of women’s health in which my family has the most experience. In finishing, I want to emphasise the broader point with which I began. We have an unequal healthcare system in which women are treated as second best and often marginalised, and that simply must change.
Hospice and Palliative Care
Paul Kohler Excerpts(5 months ago)
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Mr Paul Kohler (Wimbledon) (LD)
I beg to move,
That this House has considered hospice and palliative care.
First, I thank the Backbench Business Committee for granting time to support this important debate, and I thank colleagues from across the House for supporting my application and joining me today to discuss a subject that, to use an old cliché—but in no more apposite a context—is truly a matter of life and death.
When this House debated the Terminally Ill Adults (End of Life) Bill last November, the crisis in hospice funding and concerns over the provision of palliative care were a constant refrain in the subtext of many of the speeches from supporters and opponents of the Bill. As someone who entered the Chamber that morning undecided as to how I would vote, I became increasingly convinced throughout the five hours of powerful argument and testimony that no matter what the House decided, the time had come to address hospice funding for the provision of palliative care head on, for death is as much a part of life as living.
While as parliamentarians we readily focus on what makes a good life, we rarely consider what makes a good death. It is possible to have a good death, as I saw with my mother, who passed away in comfort at the beautiful Arthur Rank hospice in Cambridge, and with my father, who died in the exceptional palliative care facility at Bellevue hospital in New York. As a family, we remember those times as sad, but cathartic, with moments of laughter as well as tears, as when my father—somewhat confused towards the end of life, but with a glint still in his eye—asked, as I sat next to him stroking his forehead, whether I was a lady friend.
Sadly, however, too many in our society do not experience a good death, and we need to start asking why. The hon. Member for Spen Valley (Kim Leadbeater) bravely took on that challenge with her private Member’s Bill, and I hope that this debate will afford us an opportunity to build on those foundations.
Kim Leadbeater (Spen Valley) (Lab)
Does the hon. Member agree that the renewed focus on the hospice and palliative care sector is extremely welcome and overdue? Does he agree that the extra £100 million of investment shows how seriously this Government are taking the issue, showing that people approaching the end of life are fully supported in whatever choices they make?
Mr Kohler
I agree with the hon. Lady, and I will be coming to those points.
Today is not about rehashing the arguments made that Friday, but to allow Members time to discuss and reflect on this separate, but inextricably linked subject. It is not the last word on hospice and palliative care, but an important step in forging a consensus that I hope will unite us, no matter where we ultimately stand on assisted dying.
I began by referencing the crisis in hospice funding. Before I proceed further, I echo what the hon. Member for Spen Valley said and thank the Health Secretary for the £100 million in capital and digital moneys he announced last month. It will make a profound difference to the sector’s current financial position. I have been asked by individual hospices and Hospice UK to convey their genuine gratitude. In a similar vein, the Government’s recently announced commitment to extend the children’s hospice grant by a further year is deeply appreciated and equally vital to maintaining levels of service in this heartrending, but profoundly important part of the hospice movement. However, these are only short-term fixes and fail to provide the long-term funding and certainty critical to securing the future of the hospice movement.
Currently, only one third of hospice funding is provided by the Government, with the rest coming from charitable sources. That leaves hospices vulnerable to increased cost pressures, as can be seen in a recent Hospice UK survey, which found that at least 20% of hospices had cut services in the past year or were planning to do so. Becca Trower, the clinical director of the wonderful St Raphael’s hospice, which provides excellent care to residents in my Wimbledon constituency, was unambiguous when she told me:
“We have a funding crisis and we need to protect our hospice.”
Last year, that meant that St Raphael’s was forced to strip £1 million from its £6.5 million budget by ending its hospice at home service that provided vital care, advice and support to patients and carers in their own homes. It was a virtual ward, in fact, but not one that fitted within the NHS definition of such, which would have attracted the separate integrated care board funding available for such initiatives. In just one month, the cuts to the service directly impacted 26 patients, many of whom spent their last days taking up valuable hospital beds, dying in the one place they did not want to die and putting further pressure on the NHS. When the Government are aiming to move medicine into the community, it makes no sense for hospices to be forced into a position that achieves the opposite.
That contradiction is mirrored in the current funding settlement, where the Government have given with one hand and taken with the other by increasing employers’ national insurance contributions. The refusal to exempt charities will exacerbate the challenges confronting hospices. The amazing Shooting Star children’s hospice, for example, provides wonderful support for families in my constituency. It estimates that the change will add another £200,000 to next year’s cost base.
Hospices need certainty. Doubts over funding undermine morale and sap energy, making the recruitment and retention of staff another huge issue for the sector. To address these problems, the Government need to introduce a consistent, reliable funding mechanism that reflects the rising costs of care. Hospices consequently need to be included within the NHS’s much-anticipated 10-year health plan. In parallel, staffing needs must be addressed in the next NHS long-term workforce plan.
It should not be forgotten that hospices provide a variety of services in addition to palliative care, including emotional, psychological and spiritual support, as well as physio and occupational therapy, practical support, complementary therapies, respite care and bereavement services. Much of that is beyond the clinical, and not something that the NHS can be expected, nor can afford, to provide. That is why no one I spoke to in the hospice movement thought that hospices should be subsumed within the NHS. They provide a complementary service that extends well beyond the clinical, and to which a charitable funding model is more effective and appropriate.
Jim Shannon (Strangford) (DUP)
I commend the hon. Gentleman on setting the scene so well. One of the concerns that I and others in the Chamber have is the impact on the workers in hospices. It is not just about the financial implications, which are all part of the overall issue, but burnout. Staff are working long hours. They are volunteers in many cases, and they do that because it is what they are committed to. Does he share my concern that burnout in hospice care will have an impact on the NHS in the long term?
Mr Kohler
I agree with the hon. Member. We need more palliative care specialists and we need more training, and there is a real danger of burnout.
It is not just hospices that provide palliative care. When talking to specialists within and beyond the hospice sector, I have been struck by their commitment to giving patients a good death and their frustration that so many do not receive one. A palliative care doctor recently told The Guardian:
“I sometimes see patients…who come into hospital in unspeakable agony and want their lives to end. It is not because their pain cannot be prevented, but because they are not getting the care they need.”
A local oncologist told me:
“Demand for services is simply outstripping supply. The majority of patients are not getting their end of life care wishes met. The specialist palliative care teams are very good but there are not enough of them and they do not have adequate resources.”
Huge regional inequalities exist in the provision and quality of services due to the vagaries of the current funding model. The Health and Care Act 2022 included for the first time a statutory duty for ICBs to provide palliative care. However, it did not include a minimum standard of core provision, leaving it to what each ICB considers appropriate.
Freedom of information requests submitted by Hospice UK in 2023 found that adult hospice funding consequently ranged from just 23p to £10.33 per head of population across different ICBs. For children’s hospices, the variations were even starker. Research from the amazing charity Together for Short Lives found that spending per child with a life-limiting condition varied from an average of £531 in Norfolk and Waveney to just £28 in South Yorkshire.
Luke Taylor (Sutton and Cheam) (LD)
On the point about the postcode lottery—an oft-used cliché by politicians—I have heard from Hospice UK that, on one occasion, a single gift from a legacy covered the running costs for a hospice in the UK for five years. Does my hon. Friend agree that that is one of the starkest and most extreme illustrations of how the current system is so unbalanced and, from one street to the next, leaves people with such disparities of access to such an important element of healthcare?
Mr Kohler
I agree, and I will come to some solutions that might address this issue. We must increase the core responsibilities of ICBs in this area.
Inevitably, much palliative care is provided not by specialists but by generalists, such as GPs, trainee doctors and community nurses for whom care of the dying is not their primary focus. Many lack the training, time and resources needed to provide what is possible, not through their fault but due to a system that does not regard palliative care as a core function. That is all too evident at the outset of their careers, with one medical student telling me:
“I only received 2 mandatory days training on palliative care in my entire degree. This is simply not enough and we need to increase training across the board to ensure patients are given equal access to high-quality care.”
Since the Shipman case there is unacceptable legal uncertainty, particularly among non-palliative care specialists, about the extent to which analgesics can be given in a sufficient quantity to alleviate pain, even where that might hasten death. The system requires a complete overhaul. We need more palliative care specialists and better training for non-specialists, including robust advice on the legality of giving sufficient pain relief to alleviate suffering, buttressed if necessary and appropriate by more explicit guidance in the Director of Public Prosecutions’ code for Crown prosecutors and the Lord Chief Justice’s criminal practice directions.
ICBs should be required to provide a minimum level of palliative care as a core function. This would have a transformative effect on how palliative care is funded both within and beyond the hospice sector, rather than leaving it to the generosity of particular ICBs such as South West London and Surrey Heartlands, both of which do all they can to fund local hospices, but within the constraints of a funding model that limits their ability to do so.
In concluding, I want to return to where I began. The debate is a matter of life and death. Ensuring a good death is important not just for the individual at the end of their life, but for those they leave behind. Knowing that someone passed away peacefully can bring real comfort to those mourning their loss. I would like to end with the words of Fleur, whose son received end of life care at the wonderful Shooting Star hospice. She said:
“Hospices are not just places where life comes to a close…they are places where those left behind learn how to keep on living. When my son Toby died, our hospice didn’t just care for him—it cared for all of us, to give us a future not defined by trauma, but by love, resilience, and hope. Months later, when my daughter had to step back into a hospital—the place where we had first been told we would lose Toby—she froze, overwhelmed by fear and grief. When she returned to the hospice, the very place where Toby had taken his last breath, she ran inside, kicked off her shoes, and threw herself into the arms of a nurse.”
That is what it is possible to achieve. I hope the Government are listening.
Mr Kohler
I thank everyone for contributing today. This is a vital issue, and the sheer number of Members who spoke at such short notice shows how important it is to the House. We have heard many excellent contributions, but I will not try your patience, Madam Deputy Speaker, by listing those who spoke. The one motif running through the speeches was the need for a long-term funding plan. I heard what the Minister said about the £3 million NIHR investment and establishing a long-term strategy. I fear that it sounds like a plan for a plan, but I look forward to the 10-year health plan, because we absolutely need a strategy for the next 10 years, not the next two years, and I will hold him to his word.
Question put and agreed to.
Resolved,
That this House has considered hospice and palliative care.
NHS Backlog
Paul Kohler Excerpts(5 months, 1 week ago)
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Helen Maguire
I absolutely agree that it is partly a failure of the previous Conservative Government that the hospitals have not been built. It is vital that the Epsom and St Helier hospitals trust is put at the top of the list as a priority for a new hospital. A new hospital will improve outcomes by consolidating critical services under one roof, easing the strain on staff who are currently stretched across two sites. Moreover, it will enable the Epsom and St Helier hospitals to focus on elective care, diagnostics and out-patient services, which will help them to tackle the backlog more efficiently. Crucially, the new hospital will expand the overall number of beds. Centralising major acute services will address estate challenges, strengthen staffing levels and improve patient outcomes, which will reduce the intolerable waiting times experienced at Epsom and St Helier hospitals.
I turn to the distressing delay in attention deficit hyperactivity disorder assessments. In September 2024, the Darzi report highlighted the stark reality that demand for ADHD assessments has grown so significantly that it risks overwhelming available resources. Nationally, it could take an average of eight years to clear the backlog at the current rate.
My constituent Sophie has been facing the brunt of this backlog. She has been waiting since June 2020 for an adult ADHD assessment, and she will wait quite a bit longer, as Surrey and Borders partnership NHS foundation trust has informed me that it is addressing referrals from as far back as March 2019. The root cause is a mismatch between demand and funding. The service was commissioned to support 400 assessments annually, but it receives 400 referrals every two months. Sophie, like many others, has been advised to seek private assessment, an option that is financially out of reach, as she has been unemployed due to her symptoms. This inefficient system should be reconsidered to help reduce the enormous backlog. The situation is wholly unacceptable.
Mr Paul Kohler (Wimbledon) (LD)
A third of children with a serious eating disorder are not seen within the NHS waiting time standard. Does my hon. Friend agree that such delays only make matters worse, leading to sicker children, more suffering and greater costs to the NHS?
Helen Maguire
I absolutely agree that prevention is key. If we do not deal with issues immediately, they will just take longer to deal with and be more costly in the long term. The people of Epsom and Ewell simply deserve better. They deserve a healthcare system that works for them, not against them. I urge the Government to act swiftly to address these issues, and to deliver the investment and reforms that our NHS so desperately needs.
Cancer Strategy for England
Paul Kohler Excerpts(7 months, 2 weeks ago)
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Mr Paul Kohler (Wimbledon) (LD)
It is a pleasure to serve under your chairmanship, Mr Betts. I thank my hon. Friend the Member for Wokingham (Clive Jones) for securing this important debate.
As so many have said, and as Lord Darzi has confirmed, our NHS is in crisis. Spiralling waiting lists, crumbling infrastructure and demotivated staff are symptoms of the mismanagement that was all too common under the previous Government. The current state of cancer diagnosis and treatment is a testament to their failure: a lack of vision and of strategic thinking has let patients and families down. Under NHS guidelines, 85% of cancer patients are expected to wait no longer than 62 days between referral and the start of treatment, but last year the figure was less than 65% and this year is shaping up to be even worse. On current trends, in excess of 100,000 patients are failing to begin treatment within that timeframe. That is simply not good enough.
The UK is a global hub for life sciences research, yet we lag behind many countries without that expertise when it comes to applying the very research that we have often pioneered. Cancer research is a top priority for the UK, but we must aim to lead the world in outcomes too. As the Health and Social Care Committee made clear earlier this year, that requires
“a long-term strategy…which has innovation at its core.”
We need a more integrated, forward-looking approach to cancer that ensures that research, policy and delivery pull in the same direction, not opposite directions. The current system is much too fragmented.
In my constituency of Wimbledon, there are concerns around breast cancer, for which early diagnosis and treatment is critical. Across Merton, the London borough within which most of my constituency lies, breast cancer screening rates are significantly below both NHS targets and the national average. In 2022, less than 57% attended a screening when invited, which is significantly lower than the 70% national standard required to make screening truly effective. Behind those statistics are lives and families. When breast cancer is diagnosed and treated at stage 1, survival rates are close to 100%, but lower uptake of screening inevitably leads to later diagnosis and a commensurate decline in survival rates. That is why my council colleagues and I have been campaigning for NHS England to provide a breast cancer screening site in Wimbledon, which lacks the screening infrastructure necessary to meet national screening targets.
At a recent Radiotherapy4Life session in Parliament, I heard similar concerns about the lack of investment across England in radiotherapy. Only half of those who could benefit from radiotherapy are accessing it, because—in the words of the medics I spoke to—this country lacks a cancer strategy. The entire set-up is far too fragmented. To take one depressing example, even though integrated care boards are responsible for radio- therapy, some 30% of them, when subjected to a freedom of information inquiry, did not even know that.
In contrast, when the cancer referral system works well, the approach is transformational. Two weeks ago, in the wake of an elevated prostate-specific antigen level, I was put on a two-week cancer pathway; two days ago, I had an MRI and received a clean bill of health. It took just 10 days to give me peace of mind. Not everyone will be so fortunate, but everyone deserves that alacrity. A more integrated approach to cancer will speed up diagnosis and treatment and improve cancer outcomes. Consequently, I echo my colleagues’ calls for the Government to introduce a cancer strategy.
Government Policy on Health
Paul Kohler Excerpts(9 months, 1 week ago)
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Wes Streeting
This is the extraordinary thing: notwithstanding the public job application of a former Conservative Secretary of State, which did not meet the bar, I have been approached by former Ministers in the Department of Health and Social Care who served in the Conservative Government who, in a spirit of public service, have wanted either to do work for the Labour Government on issues that they care about, or have sought to share their experiences—the highs or, indeed, the many lows—of being in government. That is a totally legitimate thing to do. I suspect that, if I rang round all my Labour predecessors, I would find that the Conservative Government tried desperately hard to get them to work for them, because, as I say, the challenge for Conservative Health Secretaries was that they did not have any successful Conservative predecessors to turn to.
Mr Paul Kohler (Wimbledon) (LD)
I share the Secretary of State’s frustration and understanding of the brass neck of the Tories on this point and I do not doubt the expertise of Alan Milburn, but legitimate questions have been asked about conflicts of interest. What safeguards are being imposed or considered to address the appearance of conflicts of interest?