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Lords Chamber
Baroness Pidgeon (LD)
My Lords, the number of people diagnosed with cancer in the UK continues to grow. For the first time, the number of new cancer diagnoses each year has passed 400,000. Almost one in two of us in our lifetime will have cancer, and I am sure it has affected all of us in this Chamber.
The commitments made in the national cancer plan to improve cancer outcomes are welcome. Driving up survival rates and increasing earlier diagnosis will transform the experience of people affected by cancer. Amendment 41 in my name, to which the noble Baroness, Lady Morgan of Drefelin, and the noble Lord, Lord Patel, have added their names, focuses on outcomes. Over the past five decades, cancer survival has more than doubled due to life-saving research, earlier detection and cutting-edge treatments. But over time the rate of improvement has slowed, with the 10-year cancer survival index for all cancers rising nearly three times faster in the early 2000s compared with the early 2010s. There is, of course, a substantial variation between different cancers.
The Health and Care Act 2022 included a requirement for the Secretary of State to include cancer outcome objectives in the annual mandate set by the Secretary of State for NHS England, and that those outcome objectives explicitly took priority. The current Health Bill abolishes the mandate, including the prioritisation of cancer outcomes, and a similar duty has not been replicated elsewhere in the Bill. In publishing the national cancer plan, the Government have shown that they are committed to transforming patient outcomes. However, with the removal of the current requirement, there is a very real concern that progress on cancer outcomes risks being deprioritised amid competing priorities. I am sure that this is not the Government’s intention, and I hope the Minister will be able to reassure us today and will consider tabling a government amendment on Report to ensure cancer outcomes are on the face of the Bill.
On the other amendments in my name in this group, Amendment 217 would require the Secretary of State to introduce regulations requiring the Government to co-ordinate research into cancers with the lowest survival rates. This is a long-standing failing in our approach to some of the deadliest forms of cancer. While welcome progress has been made in treatment and outcomes for many cancers, those with the lowest survival rate, which can include cancers such as pancreatic, brain, liver and lung, continue to receive disproportionately less research focus. Greater co-ordination would help identify gaps in knowledge, avoid duplication, encourage collaboration and ensure that our scarce research resources are directed where they can have the greatest impact. If we are serious about improving outcomes and reducing cancer mortality, we must focus on where survival rates remain stubbornly low.
Amendment 228 would give patients a right under the NHS constitution to start cancer treatment within 62 days of referral. There is an inconsistency in the NHS constitution between the rights to treatment and actual waiting times. There is a right to elective care within 18 weeks, but there are other pledges for other waiting times. Cancer does not simply stop while a patient waits for their treatment. Research shows that every four weeks of delay reduces patient survival by an average of 10%. That is why I have tabled this important amendment—so that there is a focus on starting treatment and that it is reported to Parliament.
Finally, Amendment 250 from the noble Baroness, Lady Finlay, addresses the important issue of radiotherapy. This is an area which can often be overlooked in terms of cancer care, facing the longest waiting times and significant problems with access, particularly in rural areas. I understand that England has fewer radiotherapy machines than comparable European countries, and thousands of people are having to travel over 45 minutes for their treatment. With around half of all cancer patients needing radiotherapy, it is important that access to this service is improved. This is a really important group of amendments, and I look forward to the debate. I beg to move Amendment 41.
My Lords, I have two amendments in this group, and I am grateful to the noble Baroness, Lady Pidgeon, for having referred to one of them.
My Amendments 247 and 250 would address genomics and radiotherapy, because there are fundamental weaknesses in how diagnostic genomic services and radiotherapy treatment services are planned and improved across England. In both areas, rapid advances are altering survival and avoiding toxicity from poorly planned treatments. Current international comparisons by the OECD place the UK 31st out of 43 countries for five-year lung cancer survival and 26th for colon cancer survival. Overall cancer mortality data place the UK 26th out of 36 countries. Following on from the questions from the noble Baroness, Lady Pidgeon, I ask the Minister two specific questions. First, why is the UK no longer submitting information to the OECD on cancers? Secondly, will we be renegotiating for our cancer research to become part of the EU4Health programme again?
Diagnostic delays and inadequate radiotherapy services are largely responsible for our poorer outcomes. In cancer genomics, only 3% of pathologists are always meeting the 14-day national target for lung cancer genomic testing. Pathology personnel shortages are particularly severe in genomics and genetics, causing delays, which are compounded by high sample volume workload, administrative inefficiencies, delays in sample processing, and outsourcing, as well as inadequate equipment.
Recently, almost half of healthcare professionals had to start urgent treatment before biomarkers were available. Around 1,000 cancers are diagnosed a day, but delays compromise timely treatment decisions, patient safety, access to targeted therapies and eligibility for time-sensitive clinical trials, while precious time is wasted by fragmented reporting pathways, poor IT interoperability and outdated laboratory information management systems, or LIMS.
Yet genomics is one of the major strategic transformational priorities for the NHS to improve cancer outcomes. Innovation in genomics is advancing very rapidly, and AI advances in analysing and interpreting large-scale sequencing data need digital infrastructure. Although many local pathology laboratories can deliver results within clinically useful timeframes, whole-genome sequencing at genomic laboratory hubs becomes essential for complex cases and inherited cancer syndromes. In addition, it supports research and new biomarker assay development when integrated with tissue pathology and imaging.
The NHS workforce plan, which we have already discussed, must consider training and workforce development in genomics and genetics, cellular pathology, clinical biochemistry, and molecular pathology; otherwise, a bottleneck in cancer and precision medicine pathways will continue to compromise cancer diagnosis and will eventually leave us with even worse outcomes.
Radiotherapy is crucial for cancer treatment. It is the second most widely used cancer treatment. It is needed by half of cancer patients and is key to 40% of cancer cures, and there is also palliative radiotherapy. Yet radiotherapy has the worst waiting times of the main cancer treatments, with significant inequalities in access. The latest NHS figures show that wait times for radiotherapy are far worse than for surgery or cancer drug treatments. Only 42% of patients receive their first radiotherapy treatment within 62 days. In some ICBs, this is as low as 10%, so only one in 10 patients receives their treatment on time—far away from the target of 85%.
Delays to radiotherapy are worse in the east of England, the Midlands and the north-east. Delays jeopardise survival. For some cancers, every four-week delay in treatment, as we have heard, brings a 10% increase in the risk of death. That is very serious. Government data shows that access to radiotherapy among lung cancer patients was as low as 11% in some areas. As the noble Baroness, Lady Pidgeon, said, the UK has only five radiotherapy linear accelerators per million people, compared with more than seven in France, Italy, and the Netherlands. International estimates suggest that 53% of cancer patients could benefit from radiotherapy, yet in England only 35% received it as part of their primary treatment.
Improving this requires a new approach. I, like everyone, welcome the national cancer plan, but a previous error in it highlights the need for this amendment. The cancer plan claimed that 28 replacement radiotherapy machines would enable an additional 27,500 patients to be treated annually, but the now corrected figure is for 27,500 treatments, not patients. Patients can receive dozens of treatments, so this could be a tenfold overestimate in capacity increase. It shows why radiotherapy expertise must be involved in policy, particularly horizon scanning advanced technology.
Radiotherapy services do not map neatly within ICB boundaries and operate within in the wider operational delivery networks. Most ICBs have no named lead, having only one or two radiotherapy centres in their area. So the ICBs lack the necessary specialist knowledge. Secretary of State support to ICBs would improve access to modern techniques, including stereotactic radiotherapy and proton beam therapy. The financial case is compelling.
Radiotherapy is our most cost-effective curative cancer treatment. A curative course costs around £3,000 to £7,000, and palliative treatment is a few hundred pounds. It accounts for just 7% of cancer expenditure in England, despite being second to surgery for cure rates. Radiotherapy investment makes clinical and economic sense for the treatment of cancer patients. We must improve. I suggest that these amendments are practical, complementary to the Government’s cancer plan, and essential.
Baroness Royall of Blaisdon (Lab)
My Lords, I fully support all the amendments in this group. Anecdotally, on radiotherapy, a friend of mine was a very senior consultant in radiography, and he was so frustrated by the system that he retired earlier than he might. He just gave up the battle; it was so very hard. Obviously, that was to the detriment of his patients, but he could not continue any longer.
I have one question on Amendment 228, about the number of days that people should wait for treatment post diagnosis—62 days seems far too long to me, so I urge noble Lords to make it much sooner than that, because that would save lives.
Amendment 233 is in my name. I am grateful to the noble Lord, Lord Mott, and the right reverend Prelate the Bishop of Manchester for adding their names, and to Prostate Cancer UK for its support. It is a fantastic charity. Prostate cancer, as I have said so many times, is the most common cancer in men in this country. More than 64,000 men are diagnosed every year, and around 12,000 die. It remains the most common cancer without a national screening programme, but, like all cancers, early diagnosis is key.
My Lords, I am most grateful to the Minister for her comprehensive response to the amendments, including mine. Can she assure us that the data that she spoke about will now be supplied directly to OECD as well, so that we will be able to resume international comparisons, and that it will include quality of life data as well as simply survival data, because survival data itself may be misleading? In among the quality of life, of course, there is the impact of the family reported outcome measures as well, which can go along with that and be very informative. Unless all the data, including genomics data, is linked to demographic data, we will not get much further in untangling some of the underlying causes, which may be environmental, of the increase in malignancies that we see in the younger population. There has been an upward creep, but it is definitely there.
I will need to check on the first point that the noble Baroness asked me about—the supply of information—but I will gladly write to her once I have looked at it. I absolutely agree with the point that she makes about data being one thing, but it is only as good as the use you can put it to. We seek to collect the right data for the right purpose; in other words, to improve outcomes.
My Lords, I feel like a mere iron filing after the magnet of wisdom and knowledge from the noble Baroness, Lady Gerada, on primary care and continuity of care, but I will be a little iron filing that does its best. I will speak to Amendment 60, which would insert a new clause after Clause 14, and Amendment 62 to Schedule 1. They are both in my name and I thank the noble Lord, Lord Holmes of Richmond, who is not in his place at the moment, for adding his name to them.
These amendments are about people who the NHS too often fails to see and who, too often, cannot see well for themselves. SeeAbility has campaigned on this for many years and I am particularly grateful to Scott Watkin and Donna O’Brien for their help, research and guidance on these amendments. Research for the Royal National Institute of Blind People and SeeAbility found that adults with a learning disability are 10 times more likely than the general population to be blind or partially sighted. Nearly one in 10 is blind or partially sighted and around six in 10 need glasses. For children with a learning disability, the risk of serious sight problems is 20 times higher.
The conditions are cataracts, glaucoma, diabetic retinopathy and keratoconus. The last of those conditions affects as many as one in 10 people with Down syndrome. According to the Down’s Syndrome Association, if it is not caught early it can take sight for good, yet those at greatest risk are among the least likely to be tested. Around half of adults with a learning disability have not had a sight test in the recommended two years.
When SeeAbility tested children in special schools, more than four in 10 had never had their eyes checked at all. Many people with a learning disability cannot tell us that their sight is failing; instead, it shows up as withdrawal, distress or falls, and too often this is put down to the learning disability itself. This is called “diagnostic overshadowing”: people labelled as challenging when the real problem was that they could not see.
When an adopted pathway was piloted in three London boroughs, over half of those tested had an eye problem that could lead to sight loss, and nearly two-thirds ended up in glasses. Amendment 60 would change Regulation 3 of the Primary Ophthalmic Services Regulations 2008, which lists who gets free NHS sight tests: children, people over 60—probably including many noble Lords—people with diabetes or glaucoma, and people over 40 with a family history of glaucoma. The logic is clinical risk. By that logic, people with a learning disability should be on the list. Today, an adult with a learning disability, however profound, gets a free eye test only by qualifying some other way, often through a means-tested benefit.
So my first question to the Minister is: what is the clinical justification for giving a free eye test to somebody over 40 with a family history of glaucoma but not an adult with a learning disability, who is 10 times more likely to go blind or be partially sighted? The amendment deliberately covers people eligible for the GP learning disability register, not those already on it. The registers undercount, and no one should be denied a test because a practice has not updated its list. It also links to the annual health check, where GPs can prompt for that eye test.
There is also a data problem. NHS sight test claim forms have not recorded disability, so we cannot know how many people with a learning disability get a test. Can the Minister confirm whether that data is now recorded and, if not, how the department can say it is reducing an inequality when it does not measure it? Will it add this field to the data collection?
Amendment 62 deals with assessing need and commissioning services, because a free test is necessary but not enough. The NHS sight test fee is £24.13, and the Association of Optometrists estimates that it covers only about half the cost of a standard test. It pays nothing towards the longer appointments or Easy Read results that many people with a learning disability need. Many are sent to overstretched eye hospital services that are not appropriate to their presenting need. The Easy Eye care pathway, with longer appointments from specially trained optometrists, works, but it is commissioned only in south-east London, parts of the north-west and Durham. Everywhere else, the system is literally blind to the need. Can the Minister say what the plans are to try to ensure that every integrated care board now commissions this type of test? What will the Government do to ensure that it becomes standard across England?
This Bill moves NHS functions, including primary ophthalmic services, to the Secretary of State. This amendment would require the Secretary of State to assess the need and to direct ICBs—I know what I have said previously, but it is still in the Bill—to improve and measure the eye health of people with a learning disability through targeted action. As I said, I am wary of open-ended powers of direction, but I have argued that the Secretary of State should set clear outcomes and hold the system to them. This is exactly the kind of outcome that I would like.
I give the Government credit: the Special Schools Eye Care Service has £12.7 million of recurrent funding to reach up to 165,000 children. However, schools must opt in, rollout is uneven and, at 19, these young people fall off the cliff edge into an adult system not built for them. Will the Minister confirm by what date the service will be available to every ICB in England and what will happen to those young people’s eyecare when they leave school?
The NHS rightly recognises that people with diabetes need regular eye checks because they are at higher risk. People with a learning disability are at much higher risk and far less able to tell us when something is wrong. These amendments would bring them into line with the clinical risk profile that they face with their eyes. No one should lose their eyesight because the system was not designed with them in mind. I hope the Minister will look favourably at these amendments and I look forward to her response.
My Lords, I thank the noble Baroness, Lady Neville-Rolfe, for having brought this to our attention. As my noble friend Lady Gerada said, continuity of care is incredibly important. A relationship with a clinician is a two-way process. As a patient, you need to have confidence in that clinician and they need to understand the complexity of you as a person. It is very easy to think that this is all about facts that we write down: observations and things that go in patient notes. However, it is important to remember that about 80% of communication is non-verbal. Therefore, the way that you have seen a patient and the way that you observe them later on become absolutely critical.
In my own time when I was a GP, we used to take all our own calls up until midnight and then quite often we were in the pooled rota with other practices. However, that meant that whoever phoned up during the evening was somebody we already knew and understood, and I think we were able to give much more appropriate advice or decide to go straight out to see them than happens now with the 111 screening process.
In my own discipline of specialist palliative care, that continuity is incredibly important. We are looking after patients with very complex needs, often very young people, and conversations with children about the fact that their parent is dying is not something that you can have from one person to another. It has to be the same clinician, whether that is a specialist nurse, the doctor or a specialist social worker, who then follows through. Building up confidence with that family as they face the ultimate disaster is really important, and most of that is non-verbal and interpersonal.
We have seen the advent of Martha’s rule, which has come about because parents have observed that their child was looking and behaving less well, and they were alert even though the staff around had not noticed or picked up on the signs. In a terribly sad way, that is an overwhelming testament to the importance of some continuity, rather than simply looking at observations and exchanging facts.
I can see that perhaps the wording of the amendment could do with a little modification. However, we have raised a very important subject tonight and there is a core principle, and that will mean stripping out some of the bureaucracy that is stopping clinicians from having the continuity that they want to have and that their patients want from them.
The noble Baroness, Lady Neville-Rolfe, spoke about patients getting letters. In fact, it is now standard practice across the NHS in secondary care that a patient will get a letter. Sometimes it is dictated at the time when the patient is still in the room and then they will get the hard copy afterwards. Some clinicians will tape-record the conversation—although not so much now—and allow the patient to listen to it again at home later on, and then see them for questions to be asked. That has come about, but it does not substitute for this core principle of actually being able to have continuity. The one thing that is important is that we do not force patients to be locked into continuity with somebody who they do not feel comfortable with or have confidence in, and who, really, they never want to see again. They need to be able to choose to see somebody different.
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Lords ChamberWe are keen to be open about this. The immediate expert review, which will take just three months, will be led by Professor Anthony Chalmers. It will examine progress since the 2018 brain tumour research report. I look forward to that review being published within three months. A national action plan, which I am sure will refer to the points that the noble Baroness made, will then help us to move discoveries from the laboratory into treatments and clinical care much more quickly. That is where we need to be.
My Lords, what powers will the appointment have, given that 74% of patients are diagnosed in A&E because of delays in diagnosis in primary care? This results in 45% of patients being told in A&E that they have a brain tumour. Even when they have a biopsy, there are inadequate freezing facilities for biopsies to be taken and kept so that personalised medicine can be developed and entered into studies.
On the point about brain tissue freezing, NHS England has, as the noble Baroness may be aware, just completed a freezer capacity gap analysis and is in the process of working with sites to ensure additional capacity. I share her view that identification in an emergency setting is not the best place, although that will sometimes be the case. All this movement is to reduce that incidence.
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Lords ChamberMy Lords, I just have a very quick practical suggestion to deal with some of the issues the noble Lord, Lord Blencathra, and others raised about staff neutrality, because that is what we are talking about. Would it not be wise, rather than going through a long process, to make it part of the NHS constitution that staff have to be neutral in how they deal with fellow staff and patients with whom they come into contact? I ask the Minister to consider that seriously when she reports back not just today but on Report. It is just a practical suggestion.
I will be very brief in supporting that suggestion from the noble Lord, Lord Scriven. When I was listening to the debate, I was thinking about people who have told me about feeling discriminated against. They often do not declare their racial, religious or whatever view, because they are terrified of being further labelled and discriminated against. The noble Lord, Lord Shinkwin, spoke about the history of this for the Jewish people; there were lists of who was Jewish, particularly in the Netherlands, which were rapidly exploited to round them up with speed and persecute them further. That is a very deep-seated fear in a lot of these people.
The other fear is that, if they disclose that they have been discriminated against, they will be undermined in other forms that make their lives even harder. I can again think of other specific examples that have been brought to my attention. I commend this solution as a way forward.
Baroness Pidgeon (LD)
My Lords, this group of amendments is incredibly important. I thank the noble Baroness, Lady Gerada, for tabling most of them and for her powerful words about Jewish staff and patients, and their experiences in the data that she also presented. In different ways, all these amendments are trying to ensure that all parts of the NHS stamp out antisemitism and racism, and provide the right training on it, as recommended by the review from the noble Lord, Lord Mann.
I completely agree with the neutrality point that the noble Lord, Lord Hunt, raised about the uniform that staff wear. I recall that, several years ago, the Metropolitan Police had a huge issue with badges that officers started to wear as part of their support for charities such as Help for Heroes. That was ruled out of order, and they were not allowed to wear them. I think this is a similar thing, and there has been a sort of creep in uniforms over the years in what is acceptable or not. We need to make sure that all staff are seen to be neutral and behave neutrally.
The amendment on assessing the performance of ICBs is important in ensuring that trusts have a duty to prevent this and respond to it; it would ensure that that is integral to these organisations. The noble Lord raised a point about leadership. We on these Benches fully support the Mann review and the implementation of its recommendations, and my noble friend Lord Scriven’s practical suggestion about the NHS constitution is certainly a good idea worthy of consideration by the Minister. I hope the Government will look at how best to implement these amendments—as worded or in a different way—and I look forward to the Minister’s response.
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Lords ChamberMy Lords, can the Minister confirm that the partner policy that she referred to—which is being developed as guidance and would avoid anything going into statute—will include a requirement that the carer providing principal care for someone when they are discharged from a unit will be assessed for how much they can and are willing to do in providing care and will be taught procedures that may make the care of the person easier? This includes simple things such as how to help someone get up from a chair, how to manage if someone falls on the floor and even how to give injections for breakthrough medication, such as for pain relief if that is indicated—so that carers are not left feeling that they do not know what to do when the person they are caring for comes home.
The noble Baroness makes extremely fair points. The discharge process takes account of whether somebody can be safely and properly discharged. The care that is provided, whether by a professional or an unpaid carer, has to be absolutely right. She is right to make the points and I am sympathetic to them.
My Lords, I am most grateful to my noble friends Lord Patel and Lady Hollins, and the noble Baroness, Lady Bennett of Manor Castle, for having added support to my amendments. I declare my interests as a vice-president of Marie Curie, an international adviser to the Cicely Saunders institute and professor of palliative medicine at Cardiff University.
Amendment 26 proposes a transformational fund to improve palliative care by scaling models for which there is strong evidence of proven benefit. Amendments 279B, 242 and 78 state what must be commissioned to rectify current deficits. These amendments are all important.
It is a rare finding in health economics to know that if you invest in a health or care service, people’s well-being and quality of life will improve, while overall NHS costs are likely to fall. The evidence for this benefit is strong. We know such care works; there is very clear and robust evidence of good benefit from specialist palliative care, for all conditions. When home-based, it improves symptoms and increases the likelihood of home death, when preferred. In hospitals, specialist teams reduce in-patient bed days, deaths in hospital and healthcare costs, while improving simultaneously quality of life. In 2022, specialist palliative care supported more than 20,000 people in England to die outside hospital, saving 1.5 million hospital bed days and £117 million in healthcare costs. Currently, one in three people in England and Wales die with unmet palliative care needs; by 2040, this is predicted to increase by over 23% if nothing is done.
This unmet need in a third of all expected deaths relates to both general and specialist palliative care provision. Specialist palliative care is essential for those with complex needs and for upskilling generalists. Failures in care lead to poor outcomes, more hospital deaths, and higher health and care costs. Shifting from hospital to community will require upfront investment; hence the call for a transformation fund to deliver longer-term savings and better care by investing in proven interventions of home-based care with specialist support.
Of those dying from non-sudden causes, one in five people with cancer and four in five with dementia or heart conditions cannot access the specialist palliative care input they need. Difficulties getting care, challenges navigating a complex system and poor co-ordination lead to a lack of physical and psychological safety. Patients and their carers feel that care at the end of life in the community is unco-ordinated and insupportive. As a result, over half of people approaching the end of life resort to A&E to get the help they need.
Despite the Health and Care Act 2022 stating that palliative care services are core, less than a quarter of integrated care system strategies have this as either a priority of focus or an ambition. In 2023, only three ICBs could state that they commissioned core components of the relevant NICE guidelines. Almost half of ICBs realised they could not meet palliative care needs even moderately. Implementation of the NICE recommendations made over a decade ago remains patchy. The 2025 National Audit of Care at the End of Life—NACEL—in hospitals found poor access to palliative care.
Yet crises and difficulties occur at all hours. For those at home, only one in three UK areas have a designated phone advice line at all hours despite NICE guidance, and such lines are often charitably funded. Only one in five ICBs commission 24/7 access to advice, and fewer than one in 10 actually have access to a specialist nurse overnight—although access is a bit better at weekends and bank holidays. Fewer than two-thirds of hospitals provide face-to-face specialist palliative care seven days a week. This is hardly surprising, as the consultant staffing levels range from one per 154 hospital beds to one per 3,673 beds. Only a third of areas provide direct admission to hospice out of hours.
For children, only a third of paediatric palliative care teams meet NICE staffing guidance. Some tertiary children’s hospitals, such as Manchester and Leeds, and hospitals with paediatric intensive care units, such as King’s, still do not have a consultant lead. For babies, children and young people at home, only 31% of ICBs could evidence commissioning 24/7 end-of-life care to national quality standards.
This data shows that ICBs clearly do not know whether they are meeting their populations’ palliative care and end-of-life care needs. Some 65% of people across the UK being worried about access to such care, and 41% thinking too little resource is allocated to it. The evidence strongly supports specialist palliative care being stipulated in the Bill, as in my Amendments 279B and 242.
Covid revealed how integrated palliative care teams cared better for patients and contributed across health and care. Those in community and in publicly managed services appeared better able to respond to escalating needs. We must collate person-centred outcomes; outcomes are not the same as experience. People cared for with kindness and compassion may report a good experience, even if their care fails to manage their pain or other symptoms optimally. Data on unmet holistic palliative care needs and gaps in access is essential to service improvement. Robust national post-bereavement surveys can capture the voices of recipients and those who represent those who were very sick and dying.
Increasingly, electronic systems share information, although sometimes slowly, between NHS and charitable hospices on discussions and decisions people have had about their care. Such conversations guide advance care plans, which are the advance statement of wishes in the Mental Capacity Act, for which the noble Baroness, Lady Barker, is to be commended. Sensitive holistic conversations are part of good care. They must be at the person’s own pace, respecting ambivalence and changes, and not risk becoming a tick-box exercise.
Care improves through evidenced innovations. The IMPACT centre’s digestible research summaries foster the adoption and spread of innovation and inspire researchers whose outputs contribute to our economy. Evidence from the NIHR policy research unit is that specialist palliative care increased quality of life with reduced costs at home of £7,900 per person and reduced hospital costs of around £6,500 per person who dies.
We know that specialist palliative care works. The evidence is clear and robust: it reduces hospital bed days, deaths in hospital and healthcare costs, while improving quality of life. We have a moral and economic duty, and an opportunity, to ensure that access to specialist palliative care is improved. I beg to move.
The noble Lord says “conditionally”. I would I expect it always to be conditional, but I thank him for clarifying.
To address the concerns of the noble Baroness, Lady Coffey, as we have already discussed in Committee, Section 1C of the NHS Act 2006 states:
“In exercising functions in relation to the health service, the Secretary of State must have regard to the need to reduce inequalities between the people of England with respect to the benefits that they can obtain from the health service”.
This is a deliberately overarching duty that applies across the whole of the health service, so we do not consider it appropriate to create separate versions of that duty for individual services. That would risk duplication and make the legislative framework overly prescriptive.
The much talked about modern service framework for palliative care and end-of-life care was referred to as a “trick or treat” test by the noble Lord, Lord Stevens —I will leave him to conclude, when I finish. I also assure the noble Baroness, Lady Coffey, that no one in this Chamber wants her to feel grumpy, and I am sure that nobody in the department wishes her to feel grumpy.
The modern service framework will focus on reducing inequalities. It will identify, measure and reduce inequalities, and reduce unwanted variation in access, experience and outcomes—I say to the noble Baroness, Lady Grey-Thompson, that that absolutely includes in respect of disability. The modern service framework is indeed anticipated in the autumn, which we remain in. I know that we are all keen to ensure that everyone can receive high-quality and personalised care in the right place at the end of life. I look forward to the modern service framework giving us the best way forward on that.
I turn to Amendment 78, also in the name of the noble Baroness, Lady Finlay. As per Clause 21, the Secretary of State is already required to undertake an annual performance assessment of each ICB in discharging its statutory functions. Again, that was spoken to by my noble friend Lord Hunt. I say to the noble Baroness, and to the noble Baroness, Lady Hollins, that the latest report for 2024-25 was published on 17 December last year. Future assessments will continue to consider how ICBs are discharging their statutory palliative care duties. I very much understand the calls from noble Lords across the Chamber and their emphasis on how important this is.
The modern service framework will indeed build on the ambitions set out in the neighbourhood health framework, which includes increasing the identification of those approaching end of life by 10% and reducing non-elective admissions and hospital bed days by 10% for those at end of life. I take the point that the noble Baroness, Lady Hollins, made about measurement and ambition in particular. On the NICE guidance in this area, in keeping with all NICE guidance, although it is not statutory or legally binding, as local healthcare professionals need autonomy to make clinically appropriate decisions in relation to their patients, there is an expectation that commissioners and service providers take it into account when they make those decisions on how to meet the reasonable needs of their populations.
On Amendment 230, tabled and spoken to by the noble Baroness, Lady Pidgeon, alongside the existing statutory framework that I have already outlined, the already published universal principles for advance care planning promote opportunities for individuals, including those with a terminal diagnosis, to discuss their wishes, their preferences and the clinical recommendations. Health and care professionals are expected to provide appropriate opportunities for individuals to engage in advance care planning. This area was spoken to by the noble Lords, Lord Kamall and Lord Patel, as well as the noble Baroness, Lady Barker.
These principles explicitly recognise the importance of involving a person’s family, carers and those who are important to them. I emphasise the point that those who are important to us do not always come neatly packaged. They are to be involved in discussions, including through the nomination of a named spokesperson. The outputs of these discussions may include one or more of the following: an advance statement —I have heard how helpful that is, along with the importance of an advance decision, where it is to refuse treatment—context-specific treatment recommendations and lasting power of attorney, where it is appropriate, in line with the Mental Capacity Act 2005.
Additionally, for those nearing the end of their life, the Government’s priority is to provide people with financial support quickly and compassionately. The noble Lord, Lord Patel, and the noble Baroness, Lady Barker, both spoke to the absolute importance of compassion being at the core of everything that is done. In a practical sense, the main way that this is done is through the special rules for end of life, which apply to five key benefits, including the personal independence payment.
I move on to the points on medicines access raised under Amendment 242, tabled by the noble Baroness, Lady Finlay. The pharmacy quality scheme forms part of the community pharmacy contractual framework. The scheme’s palliative and end-of-life care domain aims to ensure sufficient arrangements are in place so that patients, relatives, carers and healthcare professionals can obtain medicines in a timely manner—again, something spoken to very clearly by the noble Lord, Lord Patel. ICBs commission out-of-hours dispensing arrangements where there is a need for patients to access medicines outside core pharmacy hours.
Finally, I will address Amendment 26, tabled by the noble Baroness, Lady Finlay, on which we heard a number of contributions. Funding for palliative and end-of-life care is available through existing NHS funding arrangements and, as I have outlined, ICBs have statutory responsibility for commissioning. Indeed, as we have discussed on a number of occasions, local commissioners are best placed to determine how funding should be allocated according to the population need, local service provision and the best use of available resources. The ring-fenced fund proposal, which would mean establishing it in primary legislation, would, we believe, risk being overly prescriptive and would limit the flexibility of local commissioners to determine how resources are best used.
On the point about hospices and funding, I very much recognise, as have noble Lords, the absolutely vital part that voluntary sector organisations, including hospices, play when providing support to people at the end of life, but also to their loved ones. It is also worth noting that the majority of palliative and end-of-life care is provided by NHS staff and services, to whom and for which we are also most grateful. It is true that the amount of funding for each charitable hospice will vary but, by definition, that depends on the demand in local areas and on the type of palliative care provision. My noble friend Lord Hunt made the point that hospices value their operational independence—that is something that I have found in my discussions with them—and they are great innovators. I understand the point about funding, as I do in this whole area. However, when I have looked at this and spoken with hospices, that ability to operate independently is one that they really value.
The modern service framework will ensure that palliative care and end-of-life care is well within a strategic commissioning model. Importantly, there will be clear and transparent contractual arrangements, which I hope noble Lords will welcome.
My Lords, I am extremely grateful to all noble Lords who have spoken in this debate, particularly my noble friend Lord Patel and the noble Baroness, Lady Barker, for sharing recent experiences, and my noble friend Lady Hollins and the noble Baroness, Lady Coffey, who have also drawn on their experiences. Everybody in this Chamber has experienced being bereaved: it is a universal experience, and we all carry with us the mark of whatever happened.
(1 week, 6 days ago)
Lords ChamberMy Lords, as I said at Second Reading, the abolition of NHS England is being taken forward with the interests of patients firmly at its core. It will provide greater clarity for the system. It will restore democratic accountability and free up resources to be reinvested in the front line. It will also bring greater clarity about where responsibility lies, ensuring that Ministers are accountable for national decisions while devolving more power to local NHS organisations. Patients will benefit from faster and clearer decision-making, with less duplication and red tape, with staff being allowed to spend less time navigating bureaucracy and more time focused on care and delivery.
I will address the government amendments to Clauses 2 and 28 together. Amendment 1 and consequential Amendments 2 and 3 make additions to Clause 2, which empowers the Secretary of State to establish transfer schemes. These clauses provide a structured and transparent means of moving property, staff, rights and liabilities from NHS England to the Department of Health and Social Care, integrated care boards and other relevant bodies.
Following engagement with the devolved Governments, these amendments have been tabled to require the consent of the relevant devolved Government should a transfer be made to a Welsh, Scottish or Northern Ireland public body. Amendment 1 does not change the purpose of Clause 2 but provides assurance to devolved Governments that any transfers to their bodies can take place only with their agreement. I emphasise that there are currently no plans for transfers to be made to devolved Governments’ public bodies, but this amendment provides a proportionate safeguard if such circumstances arise in the future.
Likewise, Amendments 103 and 104 are technical amendments to Clause 28, this time in response to engagement with the Welsh Government. They make clear the territorial limit of the clause to ensure it could not be used to establish, or delegate functions to, a Welsh special health authority. I believe these to be sensible and proportionate amendments, and I beg to move Amendment 1.
My Lords, I welcome the Minister’s discussions with the devolved Governments and her saying that nothing is going to be potentially imposed on them, particularly having had those discussions. But can she clarify what will happen to some of the prevention agendas that have been in place—such as the Couch to 5K programme, for which I understand no outcomes have been collected, but which has been part of NHSE and the department’s promotion of exercise—and whether these programmes will be increasingly promoted across England as part of the prevention agenda, and in discussion with the devolved Governments, so that we get consistency in prevention across the United Kingdom?
Baroness Pidgeon (LD)
My Lords, we welcome these Government amendments, which ensure that the devolved Administrations’ boundaries are protected and that there is proper consultation and agreement. But devolution must be integral to any legislation from the start, rather than an afterthought. Granted, there has been consultation with the devolved Governments, but these amendments were tabled very late and this is a worrying sign. It is an indication that aspects of the reorganisation and its governance implications had not been properly thought through at the start—through the lens of the devolved Administrations, rather than simply through that of Whitehall and civil servants centrally. The Minister’s words have provided some assurance, and I look forward to the devolved Administrations being at the start and the heart of legislation such as this in the future, rather than an add-on at a late stage.
My Lords, I added my name to the amendment tabled by the noble Lord, Lord Hunt of Kings Heath, because this goes almost to the heart of the way that we account for what we do and what we buy in the NHS.
One of the problems is the accounting lines. A piece of equipment that might appear, at face value, to look expensive in fact saves enormous expenditure and lessens patient distress and morbidity, from a different budgetary line. The saving is a fallacy. I would welcome value-based procurement. I acknowledge the work that is being done by the medical technology and innovation directorate in the department and encourage that this goes across the whole of the NHS and social care system.
It is the clinicians who know that the cheapest is not necessarily the best, but, at face value, that may not always seem adequate. NICE has produced examples of where the cheapest is certainly not the best. Let me give one specific example, relating to something that is quite expensive: namely, cardiac pacemakers. Most cardiac pacemakers have wires. There are some which are eight times more expensive, but they do not have leads on them. That might seem a lot of extra money but, if patients have had radiotherapy to their shoulder and the left side of the chest, or if they are at very high risk of infection because they are on immunosuppressives or because they have a condition where they are immunosuppressed, then actually they are at high risk of getting infection on the leads because the leads are a foreign body in their body. The cost of managing sepsis, with patients in ICUs, vastly outweighs the cost of using different pacemakers for a small number of patients.
Think about urinary catheters. Patients who self-catharise may find that one type is much easier for them to use than another, and if they use it well and properly then their risk of infection is much lower. Generally, self-catheterisation is easier for men than it is for women, but certainly women who have a disability may find that they have got used to manipulating one type of catheter to self-catheterise. It becomes very cost-effective.
The clinicians are the ones who know what the outcomes are for particular devices, so that needs to be embedded in the tendering process. I hope that the voice of the clinicians determining the overall outcomes will be considered ever more as this goes forward. In Wales, we have the Value-Based Health and Care Academy, at Swansea University, which produces interesting work and is internationally recognised as a leader in the field because of its different way of thinking. I hope that there will be reporting to us on how this works when the change has happened.
My Lords, I want to speak briefly in support of Amendment 211, in the names of the noble Lord, Lord Hunt of Kings Heath, and the noble Baroness, Lady Finlay.
I declare an interest in that I am an officer of the All-Party Parliamentary Group on Access to Medicines and Medical Devices, which has held meetings on the value-based procurement of medical devices. I chair a group looking at breakthrough implantable devices, which has taken an interest in the procurement of just the kinds of devices that the noble Baroness, Lady Finlay, was talking about and in the importance of clinical input to understanding the potential value of such innovative devices.
Some Members of the Committee will know that I have been an advocate of value-based procurement and, where medicine is concerned, value-based pricing as an approach in the National Health Service. There is some good work being done in the department on promoting value-based procurement; we just need to make sure that it is understood and implemented correctly. I have been worried by evidence from some early tenders that the attitude is that the assessment of value should be conditional upon the achievement of a pricing threshold. Sometimes the pricing threshold is set at a point where the calculation of potential value is effectively nullified. If we are serious about understanding value-based pricing, we cannot put in a pricing threshold. You may well attach greater or lesser weight to the pricing element, but you cannot attach a threshold and believe that you are implementing value-based pricing. Quite often, part of the value assessment is to look at issues of patient experience, the outcomes that are to be achieved, the long-term life of a product and how it is used, to arrive at the overall value of a product. This is perfectly normal in commercial procurement. I do not think we are talking about something that should be regarded as exceptional to the NHS. It should be something that is regarded as normal and best practice in procurement.
It is slightly dispiriting in a sense, as I have seen an awful lot of progress on procurement in the NHS. Some 30 years ago, I was working with Unipart—before I came into Parliament—in trying to encourage the NHS, for example, to have just-in-time delivery and barcode-based procurement. That was an awfully long time ago and we have progressed a long way. It seems to me that, if we are keeping pace with the best procurement practices —and I hope the NHS will do that—we should be looking at a value-based system. I very much support what the noble Lord, Lord Hunt, said about that.
(1 week, 6 days ago)
Lords ChamberMy Lords, I added my name to several of these amendments because I think they are crucial. I read them very carefully to make sure that, in the event of there being major safeguarding concerns, it would not cut across them, and I do not believe it would. I think it will improve care.
It requires a change of attitude on behalf of healthcare staff to accept the fact that sometimes the person who is the relative, the carer who has been looking after someone at home, knows only too well exactly how to communicate with them if they have communication difficulties and how to manage even complex equipment such as their ventilator, sucking them out or whatever. In the hospice where I was medical director, I clearly remember one lady with a horrible tumour; her children wanted to do her dressings for her, and she wanted the children to do them. It was important for those children to be able to help, and encouraged to care as they wanted to, so that they were with her right through her illness. We provided accommodation for them to sleep there when she was dying. We also provided a family room and even had beds that we could put together, so a relative could sleep next to somebody. It really transformed care. It took a lot of pressure off the nursing staff, because there was somebody there all the time and if they became agitated, they could ask for help.
The staff in many units, however, can feel threatened by relatives who say the person would prefer something done one way or another. It is important that if there is someone with a person who is the patient, they have access to food and drink and comfortable seating, not a hard plastic chair, and that it is clear where they can use the toilet or even take a shower and be accommodated. It does not cost anything, but it saves a lot of staff time.
I hope that these amendments will be adopted into the main Bill to bring about that change. Those of us who went to the meeting about DEBRA, which is epidermolysis bullosa, were very touched by the cases we heard in which the mother was doing the child’s dressing changes. It was essential that the mother could go with that child into hospital, and that even when they became an adult they could go on an adult ward, because they knew exactly the least painful way to do the dressing changes. The staff who did not know the person beforehand just did not have the same knowledge and therefore could not apply the same skills.
The noble Baroness, Lady Campbell of Surbiton, spoke very powerfully about the need for a personal health budget. I know she has extensive experience of having her husband with her on many occasions when she has been in hospital, and there have been occasions when he has saved her life. This is not minor. This is very important.
(3 weeks ago)
Lords ChamberThe principle of assessing patient experience, as my noble friend described, is absolutely key to the Health Bill, and I know we will discuss this more. Since my noble friend was a young pup—as he described himself, in a different way—we now have the facilities to be much more transparent and to use data. It is important to say that the collection of data is new—it started only this year and did not exist before—and we are continuing to work with providers to improve the consistency and quality of reporting. That is absolutely key.
My Lords, given that three-quarters of physicians report difficulties in accessing essential equipment, sometimes including resuscitation equipment, for patients in corridors, and even more report compromised care, what work are the Government now undertaking with the Royal College of Emergency Medicine to increase the provision of medical assessment units, particularly working with the clinical governance leads for those emergency departments?
All of this is important, as the noble Baroness said. We are already undertaking a number of actions and one is about additional urgent care capacity; for example, in total some £2 billion is going into urgent care, particularly capital projects, which the noble Baroness did not specifically mention. The improvement of facilities, which is part of this, is absolutely key, as is getting care closer to home. With the kinds of improvements we are already seeing—for example, the emergency departments at Basildon and North Tees have had refurbishments—and by working with clinical leads, we will improve a long-standing situation that should never have been normalised and should only be exceptional.
(2 months ago)
Lords ChamberMy noble friend Lord Patel, in introducing this important debate, spoke about health data secure systems. I will speak about the Secure Anonymised Information Linkage system—the SAIL database—based in Swansea and funded by the Welsh Government, which runs on the mantra of “public data for public good”. It has been going for almost 20 years and has data reaching back a quarter of a century. The SAIL Databank was highlighted in the Health Data Research Service (HDRS) Digital Ecosystems Analysis report, because it has expertise in data pipelines, advanced data linkages and secure research infrastructure, powered by the Secure eResearch Platform, or SeRP. These capabilities are essential for the future of health data research.
The SAIL database is very widely trusted, because it was so carefully set up and is so carefully managed. The report identifies it as one of the UK’s established examples, with
“documented transformation logic and quality assurance”
built in. The database has an extensive number of research projects internationally, and it reinforces the importance of trusted research environments, TREs, and secure data environments, SDEs, where approved researchers analyse sensitive data within secure settings, rather than downloading or transferring information. That model has maintained public trust while enabling high-impact research.
Professor Simon Thompson, a co-director of the SAIL Databank and SeRP, has pointed out that they have been
“recognised as a benchmark for the UK”
and that their work linking
“Welsh population data across health, education, housing, justice and beyond shows what’s possible when secure, person-level linkage is done properly and at scale”.
It is one of the leading environments.
Sharon Heys, the head of legislation and due diligence at SeRP, has discussed the difficulties in defining the lines of anonymisation and whether data is likely to be identifiable. I am grateful to my noble friend Lord Tarassenko for talking about the Biobank data. I had the privilege of being on the ethics committee as Biobank was being set up. The durability of Biobank and of SAIL represents the importance of considering all aspects before you even get started.
(2 months ago)
Lords ChamberThis 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.
My Lords, this is much to be welcomed, because a funeral is a very important part of marking the passing of, and respect for, a person. So, in the consultation, will the Government ask hospice bereavement counsellors—specifically those who see people on the ground face to face—for their comments? Often, managerial people higher up in the bereavement service may not know some of the details that have been extremely important to families and that may have caused great offence or may have been particularly helpful, and they can get lost in the retelling as things are passed up the chain.
The noble Baroness is quite right that funerals are very personal matters—personal to the deceased, who may or may not have left their wishes, and personal and affecting for those left behind. So hospices and other groups will be worked with closely in the way the noble Baroness describes, as they are important stakeholders for us.
(2 months ago)
Lords ChamberI understand why change creates worry, but I reassure the noble Baroness that the 10-year health plan set out the role of ICBs and, as I mentioned, for the strategic commissioning of health services and neighbourhood providers. I believe it will help to move towards fewer integrated care boards; there are currently 36. That will mean a pooling of budgets, greater efficiency, a reduction in running costs and more resources going to the front line. In all those ways, I intend for the change to deliver a better service locally.
My Lords, what are the criteria that ICBs plan to use to monitor 24/7 access to services in the community? At the moment, the pressures are on emergency departments, where ever more patients arrive, because that is where the lights are on. We have heard about the governance problems of clinical errors occurring where staff are under extreme pressure and patients are in corridors.
One of the major shifts for the NHS now and in the future is about moving services from hospitals to communities; we had a Question on that just yesterday. It is important to say that the fundamentals of oversight, which we are improving, will be through the NHS oversight framework, which will be clear about delivery and approach. I should add that NHS England will be able to focus on helping the most challenged organisations with their performance and capabilities. If there are problems such as those that the noble Baroness described, they will be identified.