National Brain Cancer Lead

Baroness Finlay of Llandaff Excerpts

Tuesday 3rd November 2026 Lords Chamber

[Baroness Merron (Lab)]

We 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.

[Baroness Finlay of Llandaff (CB)]

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.

[Baroness Merron (Lab)]

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.

Health Bill

Baroness Finlay of Llandaff Excerpts

Committee stage
Tuesday 3rd November 2026 Lords Chamber

[Lord Scriven (LD)]

My 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.

[Baroness Finlay of Llandaff (CB)]

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.

Health Bill

Baroness Finlay of Llandaff Excerpts

Committee stage
Tuesday 3rd November 2026 Lords Chamber

The noble Earl, Lord Howe, asked a question about the national care service. The unpaid carers champion will drive action in the areas we have discussed, not just policy but delivery—including of the national care service. The champion will be well involved and—to the point by the noble Baroness, Lady Morris—will speak to carers across the country to ensure that their experience is reflected.

[Baroness Finlay of Llandaff (CB)]

My 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.

[Baroness Merron (Lab)]

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.

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Moved by

[Baroness Finlay of Llandaff]

26: Clause 6, page 4, line 20, at end insert—
“(5) The Secretary of State must establish a transformational fund, within a year of the date on which the Health Act 2026 is passed, to enable improvements in access to specialist palliative care and its support to generalist services.”Member's explanatory statement
This amendment would require the Secretary of State to create a dedicated palliative and end of life care transformation fund to support service redesign by scaling proven models of care that help deliver the government’s intended shift from hospital to community care for people at the end of life.

[Baroness Finlay of Llandaff (CB)]

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.

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[Baroness Merron (Lab)]

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.

[Baroness Finlay of Llandaff (CB)]

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.

Health Bill

Baroness Finlay of Llandaff Excerpts

Committee stage
Wednesday 28th October 2026 Lords Chamber

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)]

My 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.

[Baroness Finlay of Llandaff (CB)]

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.

--- Later in debate ---

Clearly, this is a little aside from the core aim of this legislation, but the way this is handled will be an indication of how future arrangements are going to be. NHS Supply Chain should, first, commit to pursuing value-based purchasing, and, secondly, recognise that, although it is owned by the Secretary of State, or will be, its job is to help the local NHS and so it should not treat it in an arrogant way but, basically, as its customers.

[Baroness Finlay of Llandaff (CB)]

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.

[Lord Lansley (Con)]

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.

Health Bill

Baroness Finlay of Llandaff Excerpts

Committee stage
Wednesday 28th October 2026 Lords Chamber

The term “health and care partner” may be unfamiliar, but it has been chosen after thoughtful discussion within the NHS, where senior nurses have been meeting with a range of stakeholders to develop a policy that is now ready for implementation. Where it has already been piloted, staff have found it supportive. Patient outcomes have improved and complaints reduced. I have seen a lot of case studies where visitors, relatives and friends, have raised concerns about the person who is resident then found themselves banned from visiting. This is really a very difficult situation. We have to shift the power imbalance in health and care settings. These amendments are one way in which I propose to do so, and I hope that the Government will be sympathetic. I beg to move.

[Baroness Finlay of Llandaff (CB)]

My 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.

Corridor Care

Baroness Finlay of Llandaff Excerpts

Tuesday 20th October 2026 Lords Chamber

[Baroness Merron (Lab)]

The 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.

[Baroness Finlay of Llandaff (CB)]

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?

[Baroness Merron (Lab)]

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.

Patient Data: Research

Baroness Finlay of Llandaff Excerpts

Thursday 10th September 2026 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My 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.

Funeral Directors: Regulatory Regime

Baroness Finlay of Llandaff Excerpts

Wednesday 9th September 2026 Lords Chamber

[Baroness Merron (Lab)]

This is the way that we are conducting ourselves. It would be a bit premature to draw conclusions on any funding requirements—we are, of course, talking about private businesses. However, we are looking—as we always do, but particularly in this area—at the costs, benefits and the impacts of different approaches before decisions are taken. Within that, we are working with the full range of funeral providers and not just the large funeral providers.

[Baroness Finlay of Llandaff (CB)]

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.

[Baroness Merron (Lab)]

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.

Integrated Care Boards: Access to Services

Baroness Finlay of Llandaff Excerpts

Tuesday 8th September 2026 Lords Chamber

[Baroness Merron (Lab)]

I 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.

[Baroness Finlay of Llandaff (CB)]

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.

[Baroness Merron (Lab)]

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.

People with Learning Disabilities: Acute Illness

Baroness Finlay of Llandaff Excerpts

Monday 20th July 2026 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, the report highlights that, for almost two-thirds of these patients, there was no assessment of mental capacity. However, when people are ill and frightened, mental capacity is incredibly important for being able to communicate with people, to make a diagnosis and to monitor a response to treatment. Without communication, of course the outcomes are worse than they might otherwise be. How will the Government improve the assessment of mental capacity across the board and implement the recommendations in the report?

[Baroness Merron (Lab)]

Guidance was issued not many months ago on this point, and I expect to see improvements. The report found that well under 50% of patients or their carers were asked about reasonable adjustments. It is not acceptable, but that is why we have brought in the mental capacity assessment guidance and the reasonable adjustment digital flag. These will make a major difference.