Patient Data: Research
Baroness Finlay of Llandaff Excerpts(2 weeks, 5 days ago)
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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(2 weeks, 6 days ago)
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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(3 weeks ago)
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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(2 months, 1 week ago)
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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.
Children’s and Young People’s Mental Health Services
Baroness Finlay of Llandaff Excerpts(2 months, 3 weeks ago)
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Baroness Merron (Lab)
Important though they are, we are accelerating the rollout of mental health support teams, because we now want to meet a more ambitious target of achieving full national coverage by 2029. We have already made progress. As of March this year, some 60% of pupils in schools and learners in further education were covered by a mental health support team. That is up from 52% the year before. The principle of integration where young people and children are is absolutely right. That is why we are not just investing in but accelerating the coverage of mental health support teams.
Baroness Finlay of Llandaff (CB)
Do the Government recognise that, as the report said, school staff often see the antecedents of mental health? Two areas where there is strong evidence are parental alcoholism, with a threefold increase in children considering suicide and a fivefold increase in eating disorders, and repeated physical punishment, particularly of children under the age of seven, resulting in emotional harm, so that simply intervening on the child may be too late, and intervention must be earlier to prevent problems.
Baroness Merron (Lab)
I agree with the noble Baroness’s observations. Early intervention is key. That is what our entire focus is on, in the ways we have already discussed, and also on developing a children and young people’s modern service framework because we want to reduce variation and ensure that children get the right support at the right time.
Foetal Alcohol Spectrum Disorder
Baroness Finlay of Llandaff Excerpts(3 months ago)
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Baroness Merron (Lab)
In addition to the ring-fenced funding I spoke of, we are going further on alcohol labels to get across the important points. In 2022, NICE produced and published a quality standard, which the noble Baroness referred to, so that the system can help diagnose but also support those affected by FASD. I am not aware of there being widespread difficulties with its adoption, because it is so fundamental to pre-pregnancy and pregnancy care, but, if the noble Baroness has particular examples, I would of course be pleased to look into them.
Baroness Finlay of Llandaff (CB)
My Lords, the Government’s initiatives on alcohol prevention in pregnancy are to be welcomed and are very impressive, but can the Minister assure us that the industry itself will not be involved in consultations and in designing public health programmes? To date, the tiny pictograms on bottles, particularly of wine and other alcohol products, are so small that they are ineffective. We really need consistent messaging in a much broader sphere where people eat out, drink out and socialise, and in all public health measures.
Baroness Merron (Lab)
I take the noble Baroness’s point, which is why I am glad that we committed in the 10-year health plan to making it a legal requirement—therefore strengthening it—that alcohol labels display health warnings and consistent nutritional information. That is something else that noble Lords have raised. As was referred to in the previous question, it is also important that we note that part of care for pregnant women is dealing with alcohol consumption.
Compassionate Use Medicine Schemes: VAT
Baroness Finlay of Llandaff Excerpts(3 months, 1 week ago)
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Baroness Merron (Lab)
Cancer charities are important in this area, and we are certainly engaging with them; they are very invested partners. I understand why people are concerned. This is not instead of the NHS. NHS medicines are provided on the advice and guidance of NICE, and that absolutely continues. As I say, what we need to do, and what we will do, is work with everyone concerned to find a solution quickly, because we want to support the pharma companies that continue to donate what are very important medicines.
Baroness Finlay of Llandaff (CB)
My Lords, do the Government recognise that it has been estimated that, for each pound invested in research, there is an approximate 25p return on that in perpetuity. Therefore, we should avoid anything which disincentivises research investment in this country, which would include the inability to recruit patients if they have to be told that, even if the treatment is successful, they will not be able to access it on the NHS afterwards because the NICE approval processes are too slow for many of these substances. Will the Government therefore undertake to speed up the NICE assessment processes to make sure that patients are not disadvantaged and research is not disincentivised?
Baroness Merron (Lab)
Indeed, we will. I can tell the noble Baroness how important speeding up access to medicines is. That is why, in April, we introduced the joint MHRA-NICE pathway for medicines, which will speed up access to new medicines by some three to six very valuable months. We have also brought in the early access to medicines scheme, the Innovative Licensing and Access Pathway, and the innovative medicines fund. All these mean that, across the regulatory and access system, innovative treatments will be available to patients who need them earlier, as the noble Baroness rightly called for.
Cancer Outcomes in the UK
Baroness Finlay of Llandaff Excerpts(5 months, 1 week ago)
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Baroness Finlay of Llandaff (CB)
My Lords, like others I am most grateful to my noble friend Lord Patel for securing this debate today, which is acute myeloid leukaemia day—so it seems very appropriate. I declare my interests as a professor of palliative medicine at Cardiff University and am employed at Velindre cancer centre, as well as my vice-president roles with various hospices, particularly City Hospice, Marie Curie and Hospice UK. I also declare my position with Cicely Saunders International, because its research in palliative care is the main research point not only for the UK but across the world. My other declaration must be as chair of the Bevan Commission in Wales, because I am mentoring one of our fellows on a project on early diagnosis of post-menopausal bleeding.
I will take a slightly historic view on this. The Calman-Hine report came out in 1995; it was the first report on cancer services and set out a cancer plan to take things forward. The current cancer plan reflects the importance of having vision and ambition because, without that, things will not change. One has to set a path forwards, and the Calman-Hine report did. It changed the organisation and structure of cancer services at the time, started multidisciplinary team working, and created centres and units.
That report was also the first time that palliative care was recognised as an integral component of cancer services from the time of diagnosis through all stages, not only in end-of-life care. It tried to set uniform standards and ensure a holistic approach, with early intervention that recognised the physical, psychological and social support needed by people from the time of diagnosis onwards. There is evidence in oncology that, usually within eight to 12 weeks of diagnosis, if palliative care services are available in parallel with the cancer services, there are improvements in quality of life and mood, patient and caregiver satisfaction, and cancer survival overall.
Unfortunately, though, the NICE guidance recommendations on 24/7 access to specialist palliative care services have not been fully implemented, neither those from 2004 nor from 2011. So will this plan integrate with the palliative care plan and strategy that we anticipate will come forward in the autumn? Without that integration, we will not meet patient need. It has already been said that two-thirds of hospice funding is from the charitable sector, yet Marie Curie estimates that about a third of people dying have unmet palliative care needs. It has been estimated that up to 90% of people dying in hospital without any specialist palliative care support available have their needs unmet.
Frailty, of course, makes everything worse in cancer treatment, from diagnosis right through to outcomes. As has been said by the noble Baroness, Lady Nargund, and the noble Lord, Lord Patel, for the ethnic minorities there is poorer access to everything, including palliative care. There is poorer access to emergency palliative care in both deprived areas and rural areas.
Where financial data is available, it has been shown by Peter May and colleagues from Hull York that, in England in 2022, specialist palliative care supported over 20,000 patients to leave hospital and have their care outside it. They calculated that, overall, this input from specialist palliative care saved £800 million, with a saving of 1.5 million hospital bed days. That is not insignificant at all. For each patient with home specialist palliative care involved, there was a saving of almost £8,000, with quality-adjusted life years also improved. For hospital patients, it was not quite as much: it was £6,500 in cost savings, but with that same improvement in quality of life.
One of the problems has already been alluded to: although the faster diagnostic standard had been met, the delays from the decision to treat, and indeed from referral to start treating, has meant that targets have not been met to date. Almost half of young people later diagnosed with cancer attend three or more GP appointments before receiving a referral to cancer services for diagnosis, meaning that teenagers have the longest time to diagnosis, with 67% diagnosed as an emergency. This puts huge pressure on parents in particular, who have to provide emotional support and take time off from work, and it of course has an enormous financial drain on the whole family.
At this point, I point out that some of these young people have very rare tumours. If we look at ocular melanoma, which is a very rare tumour, there is a subgroup of patients who will respond extremely well to some treatments that are not yet NICE-approved and not available on the NHS, even though they have been used and developed for over 20 years. Therefore, families—here I declare an interest as having a family member involved—are having to support their treatment, because the dramatic response means that they are living, rather than having already died, leaving young families.
As well as putting pressure on NICE to review the way it looks at the management of some rare cancers, will the Minister also look at the workforce training needs? Sadly, there is evidence that, even though over 90% of those dying will have some palliative care needs at some level—which is often adequately provided by generalist services when they have back-up from specialist services—the electronic staff record of nursing staff in the community shows that only a small number have actually had palliative care and end-of-life role training. The problem is that this means that about 78%—over three-quarters—of home care workers report insufficient training in pain management or anticipatory prescribing, while two-thirds have never received formal training and do not have access to palliative care services during their shifts out of hours.
There is much to be done, but much that can be improved. I hope that this plan will move us forward with better integration. The evidence shows that where we have better integration of services, it costs less and the clinical outcomes are improved.
Health and Social Care Act 2008 (Regulated Activities) (Amendment) Regulations 2026
Baroness Finlay of Llandaff Excerpts(5 months, 2 weeks ago)
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Lord Markham (Con)
My Lords, I declare my interest as the founder and director of Cignpost Express Test, which did a lot of Covid testing for sports events and currently does health screening at PGA golf events and Mercedes Formula 1 testing, so I have quite a bit of experience in health screening. As other noble Lords have said, what we are trying to do here is very well intentioned. Ours hearts go out to all those affected by the Manchester Arena bombing. This is designed to try to correct many of those ills. The fact that we have two Ministers here shows the important stress that the Government put on this, and I know that Minister Ahmed has been engaged on this, too.
There are good intentions here but, as other noble Lords have pointed out, the devil is in the detail and implementation. Everyone thinks of big events in this context but, as the noble Baroness, Lady Grey-Thompson, mentioned, the small events are the real concern. I have had volunteers at mini rugby tournaments asking, “How are we going to cope with this?” There is a confusion, which perhaps the Minister can clear up, about doctors who are currently CQC-registered through their practice and volunteer at, for example, weekend point-to-point racing events or mini rugby tournaments, who feel that they will no longer be able to do that without being CQC-registered separately for those events, which costs almost £1,000 a time. That drives a lot of the discrepancies we seem to have in the numbers: are we talking about 36 events or many thousands? It would be helpful to get an understanding of that because there is a lot of concern out there.
As a former Health Minister, I know that the CQC already has a lot on its plate. The 1,000 limit on new registrations was mentioned earlier, and this could be the straw that breaks the camel’s back, to be honest. I am very concerned about this. Event organisers and chief medical officers have told me that if it becomes too burdensome, we will employ first-aiders instead of having volunteer doctors, because they do not have to be CQC-registered. That, of course, will mean that the care is less good. They gave an example: apparently, during Wimbledon, 4,000 people saw the medical support services during the whole tournament, and only 1% of them ended up being referred onwards to the NHS or hospital services, because good volunteer doctors and medics were there. Clearly, if they were just first-aiders, a lot more of those people would have been pushed straight on down to Kingston Hospital or wherever, which would have put a large burden on the local NHS services, which I am sure we all want to try to avoid.
I have three suggestions, if I may, the first of which is an athlete exemption. Will athletes be exempt from this, since their medical treatment is quite different, as the noble Baroness, Lady Grey-Thompson, said? Secondly, there is a feeling among the chief medical officers that it would be useful to get the event healthcare standard finalised in the way that the noble Baroness, Lady Harding, talked about, before we do this. It would be useful to have this standard, but it is hard to talk about implementation until we know exactly what that standard will be.
Thirdly, I, too, would like to be involved in the meeting, if I may, but a round table with the CQC and all the chief medical officers would be useful. I know that Minister Ahmed said that he was in favour of that and suggested to the CQC that it should meet with all four chief medical officers. However—I appreciate this is hearsay—I have heard from the chief medical officers themselves that the CQC refused to meet them all together and wants only to meet them separately. I do not know why that is, but the meetings would be more valuable as round tables, with everyone in the room, so that the CQC can get the full flavour of the things we are hearing about today.
Baroness Finlay of Llandaff (CB)
My Lords, I declare an interest, in that I am president of the Chartered Society of Physiotherapy, so it is partly with that hat on that I am asking these questions.
The Manchester Arena inquiry makes harrowing reading, and I expect that there will be some bereaved people watching this debate, because they are aware that these regulations have come out following that inquiry. The deficits that the reports highlighted are really worrying, but I was struck that many of them are in the domain of so-called first aid: the failure to use tourniquets when people were bleeding, and the fact that the tourniquets were locked up in a first aid room anyway, compound the distress and the memories with which people who lost somebody in that event have to live.
So, one of my questions relates specifically to where the boundary defining first aid sits. The initial response of qualified doctors and physiotherapists may be first aid, but they may also start to instigate longer-term treatment for whatever happened at the event that could not be instigated by somebody who was trained in first aid only as a volunteer from a charity or group. I was thinking about the Glastonbury Festival, an event that is extremely well organised for medical emergencies. It is set up to do a lot of treatment on site, but some things mean that people have to be airlifted out sometimes. They go from the very minor—the joke is rashes from all the wellies rubbing on people’s legs—right through to life-threatening adverse reactions to the most bizarre cocktails of drugs. That needs a highly specialised knowledge. If emergency medicine consultants had not been working there, lives would have been lost because this is so complicated.
One of my other questions relates to the people who are to be used or employed. A level of first aid could happen anywhere, but what is needed at a sporting event may be very different from that at a large event where a lot of illicit substances are being used and the expertise required to avoid loss of life will be quite different.
My other main question relates to the boundaries around an event. How big and organised does an event have to be to qualify, or how small not to qualify? What about a local children’s football league that happens on a Saturday morning with lots of different clubs competing? The kids are traveling around with parents, and may cross from Wales to England, England to Wales, into Scotland or wherever. As amateur participants, their risk of a really bad injury is no lower —in fact, it may even be higher—than if they were playing as fully trained professionals with a full support team.
I am also slightly concerned about where the boundaries are around the person. For some of these smaller events, people will have volunteered as doctors. I know one who volunteers to work at football matches: he is employed by a large hospital and is not a sports medicine person, but he brings a lot of experience that you could say all falls within the realm of first aid, or you could say is tipping over the boundary, because general medical emergencies arise from time to time.
Both the national boundaries and the size of the event concern me. I am not quite clear where those physiotherapists sit who are in private practice—possibly solo private practice—but who are then providing support at a sporting event. If they are to register with CQC as a single worker, it might be quite a lot of money out of their practice pocket. They may therefore feel that they are not incentivised to carry on but they have a great deal of skills. The danger is that the skills available on-site at an event might, inadvertently, be lower than one is anticipating. I realise that there have been a lot of questions to the Minister, but we look forward to the answers.
Lord Kamall (Con)
I can add to that. What is the process for notifying those who will come under this regulation? That would be helpful to know as well.
Baroness Finlay of Llandaff (CB)
If I may add to the list of questions, I think it might be helpful for the Minister to explain how the decisions over the size relate to the Purple Guide that the Health and Safety Executive produced, because I understand from page 114 of volume 2 of the Manchester Arena inquiry report that the Purple Guide for an event of that size set things out quite clearly, but was not adhered to at all. I have a slight concern from the responses that we have had that we may have two completely separate things going on. The Minister may not be able to answer that now, but it would be helpful in this meeting that we are all anticipating if there is a cross-reference to the Purple Guide and if the discussions could include how that would impact and be used by the CQC in regulating.
Lord Markham (Con)
If I may, I hope this may be helpful: the confusion that I have heard is over whether a doctor, for a CQC registration at their GP surgery, can use that to volunteer on a point-to-point racecourse, as an example, or whether they have to separately register with the CQC to be a volunteer on the racecourse and pay the £1,000. Again, if that comes in the letter, that is fine, but that is one of the main points of confusion.
Terminally Ill Adults (End of Life) Bill
Baroness Finlay of Llandaff ExcerptsFriday 20th March 2026
(6 months, 1 week ago)
Lords ChamberRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Watch Debate Read Debate Ministerial Extracts Amendment Paper: HL Bill 112-XII Twelfth marshalled list for Committee - (18 Mar 2026)
Baroness Finlay of Llandaff (CB)
My Lords, I am most grateful to the noble Baroness, Lady Smith of Llanfaes, for her excellent tour de force on the constitutional issues facing the Senedd in the face of Westminster, particularly as we move into elections. I will make a few background comments, much more from my own professional angle in Wales.
We must not forget that there is a long history of health and social inequality in areas of Wales, with rurality creating many problems. My colleagues in palliative medicine across palliative care in Wales have described end-of-life care in Wales as being at breaking point, because the demands of the terminally ill Bill risk drawing away funding from a sector that sorely needs it. We have seen bed closures in Wales, which have been quite tragic. There simply do not seem to be the resources to deliver assisted suicide in Wales.
The Welsh Cabinet Secretary for Health and Social Care, Jeremy Miles MS, has admitted that ensuring the availability of Welsh-speaking staff would be challenging, but people find it much more difficult to communicate in a language that is not their first language, and it is much harder to ensure understanding, detect coercion and detect difficulties unless you can communicate in your own language. I know we are coming on to interpreters later, but I remind the Committee that Welsh and English have equal standing in Wales.
It is unfortunate that the amendment in the other place was removed because, actually, the Government’s impact assessment indicates that two in three older people in Wales struggle to make suitable appointments or to communicate with their GP, for many reasons. That is not because of a problem with the GPs; it is a problem of rurality, access, recruitment and resources.
There is also a major concern that the Senedd’s Health and Social Care Committee detected. It warned that the lack of a dedicated voluntary assisted dying commissioner for Wales would risk the postholder, as the Bill stands,
“being less familiar with the operation and impact of the Act in Wales”,
with a further risk of inequity as a result. This goes to the tension between health and justice in terms of the route.
My Amendment 764, which I am delighted that the noble Baroness, Lady Coffey, has co-signed, respects the devolved competence of Wales and would remove a sweeping Henry VIII power that the Delegated Powers and Regulatory Reform Committee, on which I serve, has objected to as “highly inappropriate”. Both Clauses 41 and 42 provide for the regulation of voluntary assisted dying services—health services provided for, or in connection with, assisted dying—in England and Wales respectively. I will now focus on Wales.
The Committee’s 32nd report expressed particular concern that
“the powers can provide for anything that an Act of Parliament can without the scrutiny that an Act of Parliament would receive”.
It went on to discuss some of the things that such a power could be used for that might evade proper parliamentary scrutiny. The follow-up 49th report again expressed
“‘particular concern’ that ‘the powers can provide for anything that an Act of Parliament can without the scrutiny’”
because
“allowing a power to provide for anything that an Act of Parliament can do makes it unknowably broad, even where there are express limitations on its exercise”.
It described this as
“a fundamentally flawed approach to delegated powers”.
The report continued:
“the exercise of delegated powers is subject to significantly less effective scrutiny than a Bill; little if any time is devoted to line-by-line scrutiny, statutory instruments are unamendable, and their rejection is exceptionally rare”—
as your Lordships know. Such wording as we have seen in this clause appears only in two Acts of Parliament: the European Union (Withdrawal) Act 2018 and the European Union (Future Relationship) Act 2020—basically, the Brexit changes.
On the day of the Senedd vote, the noble and learned Lord, Lord Falconer, wrote a letter, as already referred to, which was copied to Members of the Senedd and implied that, without legislative consent from the Senedd, a person in Wales eligible under the Act could legally access an assisted death only through a private provider or by travelling to England. He went on to state that he would seek to remove Clause 42 from the Bill—the whole of the clause.
Additionally, I suggest removing Clause 42(3), which my amendment would do, because the Bill does not state that Welsh Ministers must be consulted if the Secretary of State makes regulations about the provision of voluntary assisted dying services in Wales, nor the limits on the powers of the Secretary of State in relation to Wales. This could override the Sewel convention and impose aspects of such provision on Wales, hence my very short but crucial amendment.
Lord Pannick (CB)
My Lords, it is a great pleasure to see the noble and learned Baroness, Lady Prentis of Banbury, back in her place. She has been very much missed, and I hope this is the first stage on the road to full recovery. She, like me, may have a feeling of Groundhog Day because we have made lamentably slow progress on the Bill since she was last with us. We are on day 12 in Committee and we are still on Clause 5 of 59.
As the noble Baroness, Lady Coffey, mentioned, she began our Committee proceedings on 14 November when she moved the first of her 111 amendments in relation to Wales, and here we are again. I say simply to the Committee that of course the Bill should apply to Wales. The Bill seeks to create an exception to the prohibition on assisted suicide and that is an aspect of the criminal law of England and Wales. We all agree that criminal justice is a matter reserved to Westminster. It would be bizarre were this House or Parliament to approve the Bill but not approve it in relation to Wales. There is simply no sensible reason why people living in Wales should be denied the same options as people living across the border in England.
I listened carefully to what the noble Baroness, Lady Smith, said, and she suggested that there has been some parliamentary mischief, and that the people of Wales have not been listened to. But it is the case that the people of Wales have a number of representatives in the House of Commons. My understanding is that they all voted for the Bill.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am grateful for the views that have been expressed today. As usual, I will keep my remarks to those amendments that raise significant legal, technical or operational workability concerns. I very much associate myself from these Benches with the welcome to the noble and learned Baroness, Lady Prentis. We were delighted to see her return to your Lordships’ House and look forward to hearing from her.
I turn first to the amendments tabled by the noble Baroness, Lady Coffey. Taken together, they would restrict eligibility for assisted dying to England only and exclude people resident in Wales, registered with a Welsh GP or who have recently moved across the border. They would remove the powers of Welsh Ministers to issue regulations and guidance and limit the commissioner’s monitoring functions to England. Individually and as a group, the amendments could have complex effects, risk significant unintended consequences and lead to a lack of clarity about eligibility and the effect of the law across the England-Wales border.
Restricting the Bill to England, as we have heard, would also create a divergence in the criminal law of England and Wales. The protections in Clause 32 would not apply in Wales and the Suicide Act 1961 would continue to apply there as it does at present. It would therefore be an offence to take steps in Wales to assist access to an assisted death in England even where lawful under the Bill in England. That would represent a significant divergence in homicide- and suicide-related offences and run counter to the current devolution settlement.
Amendment 887 would remove Clause 57(2) and (3), preventing certain provisions from extending to Scotland and Northern Ireland, including those on approved substances, advertising, and employment protections. This would risk parallel and potentially conflicting regulatory regimes; may allow advertising of services in Scotland and Northern Ireland, contrary to restrictions in England and Wales; and could leave health professionals who, for example, live in Scotland but work in England and Wales without the same employment protections as someone in England.
There are a number of further amendments in this group concerning powers in the Bill relating to the provision of an assisted dying service in Wales; namely, Amendment 765, tabled by the noble Lord, Lord Goodman, Amendment 764, tabled by the noble Baroness, Lady Finlay, and Amendments 742, 743, 844, 903, 905 in the name of the noble Baroness, Lady Smith. I bring to the attention of noble Lords that these amendments may alter or impinge on the devolution settlement. Any such changes would usually be made following consultation across the UK Government and with the Welsh Government to explore the wider implications. Further, the Senedd would be expected to consider material changes that affect devolved competence.
Amendment 762, tabled by the noble Lord, Lord Goodman, would require the Secretary of State to specify which organisations will provide assisted dying services in Wales, within one month of the Act passing. This raises workability concerns as it requires clarity on who provides services before key implementation decisions have been made. This could be an interference with the ability of the Welsh Ministers in the devolution settlement to exercise their powers in a devolved area. As regulations under Clause 42 are made using the affirmative procedure, this amendment would also require parliamentary debates in both Houses within one month of the Bill being enacted.
Amendment 767A, tabled by the noble Baroness, Lady Coffey, appears to seek to limit the power of Welsh Ministers to make regulations related to private services only and would make Welsh Ministers unable to establish a publicly commissioned service. As currently drafted, the Bill leaves this as a decision for Welsh Ministers. This amendment would therefore have devolution impacts and, if passed, the Welsh Government would need to be reconsulted and the consent of the Senedd would need to be sought for this provision.
I make no comments on the other amendments in this group. As noble Lords are aware, those amendments have not had technical drafting support from officials. Therefore, any further revision and corresponding amendments may be provided to provide consistent and coherent terminology throughout the Bill.
Baroness Finlay of Llandaff (CB)
My Lords, may I question the Minister? The 49th report of the Delegated Powers and Regulatory Reform Committee drew attention to the very unusual nature of the clause in the Bill that allows the delegated powers to be used to do anything that an Act of Parliament can do and drew attention to the fact that this is extremely rare. Is the Minister saying that that is acceptable in this Private Member’s Bill and therefore potentially sets a major precedent in relation to other legislation? Can she clarify whether the Government, simply in relation to that, not to any other part, dispute the Delegated Powers and Regulatory Reform Committee’s conclusion?
Lord Blencathra (Con)
My Lords, I had an amendment in this group but I withdrew it when I saw that other noble Lords had tabled an amendment that was superior to mine. So I rise to support some of their amendments and to express my concern about the new clauses proposed by the noble and learned Lord, Lord Falconer. I agree with my noble friend Lord Gove that, with a sense of decency and integrity, the noble and learned Lord has sought to bring forward a new clause that is superior to the old one. Nevertheless, I feel it falls short of what is required to protect the most vulnerable people who need assisted dying.
The new clause presents the independent advocate as a safeguard: a final protective layer for those who may be isolated, frail or at risk of coercion. But, when one examines the detail and listens to the evidence from those who work daily with vulnerable adults, it becomes clear that these clauses are a bit inadequate and underpowered, and I feel that they are structurally incapable of doing the job that Parliament has been told they will do.
The first fundamental question concerns the advocate envisaged in these clauses not being genuinely independent. The Bill allows the advocate to be appointed by the very system that is processing the assisted dying application. That is not independence; it is administrative proximity dressed up as protection. Those who work in safeguarding repeatedly warn that advocates must be structurally separate from the decision-making machinery, yet these clauses allow the advocate to be embedded within it. As one commentator put it, this risks creating a supportive facilitator, not a safeguard. Another warned that the advocate would become a procedural escort through the system, rather than a defender of the person’s rights. If the advocate’s role is to challenge, to probe, to question and to stand up for the person when others may be steering them, they cannot be beholden to the very bodies they may need to challenge.
The second problem is that the advocate is given no meaningful powers. They cannot pause the process, require further assessment or insist on a specialist review. They cannot demand that coercion concerns be investigated. They cannot even require that their own concerns be acted on. An advocate without powers is a spectator and not a safeguard. The role has been described as a box-ticking presence—someone who can be noted in the file but whose objections can be politely ignored. If the advocate cannot intervene when something is wrong, the safeguard is a fiction. It is a comfort blanket for legislators, not a protection for the vulnerable.
The third flaw is timing. Under the clauses tabled by the noble and learned Lord, Lord Falconer, the advocate appears after the key clinical assessments have been completed—after the capacity determination, after the voluntariness assessment and after the eligibility decision. By the time the advocate arrives, the train has already left the station. How can it be a safeguard when it is applied at the end of the process, when the opportunity to identify coercion or impaired capacity has largely passed? This is a final courtesy call, not a protective intervention. If the advocate is to protect the vulnerable, they must be involved before the decisive assessments, not after them.
There is another weakness: the advocate is not even required to meet the person in person. They may rely on paperwork, remote contact or second-hand information. How can one detect coercion, fear, confusion, or subtle pressure through a file note? How can they test whether the person is speaking freely if they never see them face to face? One safeguarding specialist put it starkly: “If you do not meet the person, you are not an advocate, you are merely a reviewer of documents”. This is not a safeguard. It is an administrative gesture.
Also, the advocate may not be trained for the complexity of assisted dying, which raises questions about competence. Advocates in other statutory regimes, such as the Mental Capacity Act or the Care Act, receive training for those specific frameworks. Yet these clauses from the noble and learned Lord, Lord Falconer, contain no requirement for specialist training, accreditation or expertise. Therefore, we could end up with advocates who are well-meaning but completely out of their depth. As another commentator said, “This is a role that requires the highest level of safeguarding skill, not a generic advocate with a generic toolkit”. If the advocate is to stand between a vulnerable person and an irreversible act, they must be equipped for that task.
Finally, there is a danger that advocates can be used unintentionally to legitimise decisions made under systemic pressure. We all know the pressures: care home bed shortages; hospital discharge targets; workforce gaps; social care rationing; family exhaustion; and the subtle but real pressure not to be a burden on people. One expert warned that an advocate without power risks becoming “a witness to system pressure, not a counterweight to it”. If the advocate cannot challenge the system, the system will use the advocate to validate its decisions. That is the opposite of safeguarding.
I pay tribute to the noble and learned Lord, Lord Falconer. His clauses are well-intentioned. He has sought to deliver on what the Delegated Powers Committee said but, as I have said, the clauses are structurally inadequate. They create the appearance of protection without the substance. They offer the language of safeguarding without the mechanics, thus giving Parliament false reassurance while leaving vulnerable people exposed. If we are to legislate for assisted dying —an irreversible act, taken by people who may be frail, frightened, isolated or under pressure—the safeguards must be real, not rhetorical.
Baroness Finlay of Llandaff (CB)
My Lords, this is a very interesting group of amendments, because it seems to me that two separate things are going on. We have the neutral adviser of the noble Lord, Lord Frost, who, unfortunately, arrived too late to be able to speak to his own amendments—though they have been spoken to—and the other is the independent advocates. I share some of the concerns about the amendments tabled by my noble friend Lady Grey-Thompson, but I also have some about the amendments that the noble and learned Lord, the Bill’s sponsor, has already spoken to, whereas those proposed by the noble Lord, Lord Goodman, certainly seem to fulfil an important role and have a narrower scope.
If I might talk briefly about the neutral advisers, that role seems compatible with the scheme that I outlined last week at the beginning of proceedings. Those amendments have been very well introduced, particularly by the noble Lord, Lord Gove, who spoke about that role and the importance of neutral advice.
I turn to the independent advocates. The intention is obviously that disabled people and those with learning difficulties are supported through a very challenging process and time in their life. However, there is a risk that these independent advocates become enablers who function a little like the sweepers in curling: sweeping away blocks and smoothing people’s passage towards an assisted death. The advocates must be advocates for the patients, not advocates for assisted suicide. Given the way that the amendments are written by the noble and learned Lord, Lord Falconer, I fear that the advocates’ behaviour could be influential, as opposed to independent, because the role does not appear to be independent of the wider voluntary assisted dying service. If I have understood correctly, they would be managerially and professionally answerable to the service, but I may have misunderstood that. The way that they are appointed, who they are answerable to and who employs them is important. It would therefore be very helpful if that could be clarified.
There certainly seems to be a gap that the proposals are designed to fill; they are in response in the reply that the noble and learned Lord gave to the Delegated Powers and Regulatory Reform Committee in paragraphs 13 to 18 of the report. He certainly tried to address the issues raised and we have now seen these amendments. Perhaps the noble and learned Lord, Lord Falconer, can clarify whether the role that he drew on was based on the role of independent mental capacity advocates, but with their role extended because having capacity is obviously an essential qualifying criterion under this Bill. The independent mental capacity advocates also have a safeguarding role, which is very important. Conversely, the independent mental health advocates, who were created through the Mental Health Act, act for individuals detained under mental health legislation, regardless of their capacity.
It would be helpful to understand how his amendments were formulated because of some of the criteria in the wording of his amendment that relate to how mental capacity is assessed. Given the difficulties of capacity assessment and the current Clause 3, which I have previously argued is unsatisfactory, it seems important that these people fulfil the role adequately and should have a specified minimum training in end-of-life law, disability rights, expertise in capacity assessment itself, coercion detection, palliative care and ethics.
In the other place, the Minister raised issues that need to be resolved and I ask the noble and learned Lord, Lord Falconer, how his amendments will address these. Basically, who would be obliged to ensure that the independent advocate is present and the precise nature of obligations around their appointment? Is the advocate entitled to be, or do they have to be, present in the room during all discussions? How will a person be determined to be a “qualifying person” as the definition seems quite broad and to encompass a wide range of people with varying support and advocacy needs? Who will pay the advocates and how will they be funded? Most importantly, what assurance is there that the independent advocate could not take on the character of someone hired specifically to support vulnerable people to seek assisted suicide rather than simply support them in their decision-making as they explore the option?
We are here to make this legislation safer. While the Bill is before Parliament, it would seem irresponsible to leave such lacunae open or completely unplugged. There is the same concern over regulations being left to an unknown Secretary of State in the future.
Lord Falconer of Thoroton (Lab)
I am greatly obliged.
I will go through the amendments but, before I start, it is clear, as I said when I introduced my amendment, that the purpose of the independent advocate is as set out in my Amendment 548A. The job of the independent advocate is to
“represent and support a qualifying person in connection with … understanding the options available to the qualifying person as regards end of life care, or … anything done under this Act, by or in relation to the qualifying person”.
Just to answer the question from the noble Baroness, Lady O’Loan, as to what is meant by
“anything done under this Act, by or in relation to the qualifying person”,
the independent advocate can provide help on every aspect of it—for example, assisting in any representations that person wants to make or getting in touch with somebody that the person wants to help them make a decision. It does not envisage assistance in the last act, which is taking the substance, because it is clear in the clause that that needs to be done by the person alone.
The following words,
“anything done under this Act, by or in relation to the qualifying person”,
are used in addition to “understanding the options” because, whenever someone is going through a process, they may well understand it, but they may want help with, for example, preparing documents, filling in forms or working out whom they need further advice from. That is the relationship there. I also echo what the noble Baroness, Lady Cass, said: the purpose of the independent advocate is not to be an independent advocate for assisted dying; it is to help the person going through the process to understand the process and to come to their own decision. Can I move on to—
Baroness Finlay of Llandaff (CB)
Can the noble and learned Lord clarify the support? If the lethal drugs are there and the person feels that they cannot take them in the form that they are presented, is the independent advocate to be involved in any alteration of the preparation, such as crushing tablets or heating up substances that might make it easier for them to be swallowed?
Lord Falconer of Thoroton (Lab)
Absolutely not. Indeed, the way the Bill is drafted makes it absolutely clear that the independent advocate is there to assist in the process of obtaining the consents and making sure that the person, as they go through that process, understands the whole process. The people to whom the amendment seeks to provide the assistance of an independent advocate are defined specifically as people with a mental disorder under the Mental Health Act or people, as I have gone through already, with particular difficulties understanding, communicating or using or weighing that information.
I will pick up the point that the noble Baroness, Lady Cass, raised: if someone has a difficulty in understanding or retaining information, it cannot be envisaged that they would have a firm and settled view. I broadly share that view—but remember that the independent advocate comes right at the beginning of the process. If there are question marks in people’s minds, people should have an independent advocate. It may very well be that, if someone cannot understand relevant information, they cannot possibly have a clear and settled view. I do not think that they should be deprived of somebody to help them through the process right from beginning. That is why the range is there—because it takes place right from the beginning. I also express gratitude to the noble Baroness, Lady Cass, for broadly supporting the approach that we have taken on the words “independent advocate”.
I will go through the particular changes. First, in her Amendment 168, the noble Baroness, Lady Grey-Thompson, states that everybody should have an independent advocate right from the start. No, I do not think that that is right. An independent advocate should be restricted to those who are qualifying persons, because that is what the role is trying to deal with.
Amendment 300 says there should be an advocate for disabled people. That is also reflected in Amendment 553B, which refers to anybody with a disability under the Equality Act. Again, I say no. The purpose of the independent advocate is to help somebody who has an understanding difficulty or a mental health problem. We have therefore restricted entitlement to an independent advocate to the specific group of people who have an understanding difficulty. I was also struck by the point made by the Minister that very many people who are terminally ill—for example, with cancer—would fall within the category of “a disabled person”. It is not intended that everybody who qualifies needs an independent advocate.
I have dealt with the amendments on the purpose of the independent advocates. I have dealt with the questions raised by the noble Baroness, Lady O’Loan, on what the role will be, including in relation to the word “or”.
A point was made about consulting bodies—I cannot remember who made it; perhaps it was the noble Lord, Lord Jackson—and that we should consult before making regulations under my Amendment 549(2)(b). Section 55 gives the Minister power to consult with anybody he or she thinks appropriate, and that is probably okay in relation to that.
The noble Baroness, Lady Coffey, proposed an amendment that would require that no independent advocate could deal with more than 10 cases in a year. I do not see that that is a sensible or necessary provision. Many people who are qualified as independent advocates will be doing this full-time. I do not see why the number should be restricted to 10.
The noble Lord, Lord Goodman, suggested that the regulations should be subject to an affirmative resolution. I agree. My Amendment 862A does that.
The noble Lord, Lord Gove, spoke to the amendments tabled by the noble Lord, Lord Frost, who we are very happy to see in his place. We had had bad news that he was not available before 6 pm, so we are very glad to see him now. His amendments were ably advocated for by the noble Lord, Lord Gove, and the noble Baroness, Lady Lawlor. I am against the proposal that he is making. The proposal, as I understand it, is that where the registered medical practitioner says that they are not willing to conduct this primary discussion—obviously, the main reason would be because they were against it—we should set up a group of neutral advisers for this specific group, to which you have to be referred for the purpose of getting another Clause 5 conversation.
Noble Lords will recall that the Clause 5 conversation has to be conducted in a way that gives rise to all of the options. The preliminary discussion—the explanation to the person—must not be conducted in isolation, referring only to assisted dying, but must refer to all the options, the prognosis and the treatment. What is being proposed, as I understand it, is that a system of neutral advisers should be set up for when somebody refuses to conduct that consultation so that the person is not sent to somebody who might be biased. Remember, this is taking the person from somebody who refuses to do the preliminary discussion to somebody else. I understand the point, but that seems both unnecessary and inappropriate.
Baroness Finlay of Llandaff (CB)
I am most grateful to my noble friend Lady Cass for that introduction. This debate is extremely serious. Sometimes there has almost been black humour during it, but people have had devastating experiences and that is often what has brought them to this position.
I am grateful to the noble Baroness, Lady Royall, for intervening earlier because there are people who are desperate to live and suddenly deteriorate, and there are others who are quite resigned to dying and carry on living for quite a time. It is very variable. I also thank the noble Baroness, Lady Noakes, for flagging up the specific issue of motor neurone disease, because the disease trajectory is the important factor that will give you an indication. The problem is that although cancer is probably in some ways easier than most other conditions, motor neurone disease is incredibly variable, just as MS is, with dips and troughs and times that are much better and intercurrent infections, each one of which might be fatal. I remind the Committee that when we discussed this previously, I stressed that I wanted amendments about the progression of the disease—the disease trajectory. Those amendments were rejected, but I still think that they might solve the problem slightly better.
I remind the Committee of the wise words of the noble Lord, Lord Wolfson, when he summed up the previous group of amendments. I will not go over that again, but he really got to the point about the impossibility when patients want to know their prognosis. It is not often in medicine that you say never, but I have learned never to give a prognosis in terms of a number. I often say to people, “It would be easier for you and it would be easier for me if I could predict”, and then I help them in terms of quite simply planning for the worst, hoping for the best, and discovering what they want to do in whatever time they have left and how they want to do it. It is surprising how some people live remarkably long and some people, sadly, live for a remarkably short time, but even when you think someone is going to die in the next 48 hours and you suggest to the family that they stay in overnight, you can still be wrong. Many is the time when I have had a family stay overnight, they are exhausted the next day and the patient, fortunately, is sitting up in bed having breakfast, which is a relief, but people are tired.
I think the history of the six months came about because of the benefits system—oh, the noble and learned Lord shakes his head. Well, I shall just say a brief word about that. There are enhanced benefits that people are eligible for. It used to be that you were eligible for fast-track benefits at six months. What happened was that, because people heard that as some kind of prognosis, doctors and nurses were very hesitant to recommend going for benefits then, which is why there was all the discussion with the Department for Work and Pensions to move to the special rules at one year, when it is much easier to talk to a patient and say, “We need to plan for the worst. I think you would be eligible. We can apply, and if you live for three years, you won’t even be called for an assessment for three years, so let’s go for it now”. That can help people in difficult financial circumstances.
However, to get back to the point of the amendment, while the mathematics behind it are admirable—there is a serious misunderstanding of what “mean” and “median” mean, and many people do not understand the difference—I hope that these amendments will not be considered at all. I plead that we look at the course of disease in terms of determining whether somebody is likely to die, and then the probability of them dying within a six-month period. That probability assessment needs to be clearly written down and clearly defined so that people are not misled in either direction.
Lord Rooker (Lab)
My Lords, as usual, I came to listen and not to speak, but there are a couple of things that have been said to which I want to react. I agree entirely with my noble friend Lady Hayter, to be honest.
I will not go into the details, but I lost my first wife before the internet. There were no internet searches at all, because it was so long ago. We could work it out. It kept coming back in half the time—three years, 18 months. She was still at work—no problem there—managing a college in south London. It was coming back in half the time, so it was fairly obvious that you could measure it. We did not do it like that, and it was only later that we worked out that it came back in half the time.
When I went through it, I had no warning at all. I say to the noble Lord, Lord Moylan, that there was a consultant who had looked after me since the beginning, when I had no warning. About four years after I finished chemo—she was going off somewhere else to do research, so I was not going to see her again—she said to me, “You have to remember that the drugs deal with only half the problem”. That made me very satisfied. On the other hand, I have gone through cases involving people who were as positive or more positive than I was, but it got them in the end. That is what I remember. The drugs deal with only half the problem.
Lord Falconer of Thoroton (Lab)
My Lords, can I share everybody’s genuine pleasure that the noble Lord, Lord Moylan, is here? Can I not congratulate him on telling us about it? I would have done, but he told me he did not want it, so I respect his wishes. I thank my noble friend Lord Rooker for being willing to share his experience of the death of his first wife. I also associate myself with my noble friend Lady Royall; from personal experience, one should not feel that one has got some obligation or is in some way defective if one dies quickly of cancer or takes a particular attitude. We should not be censorious one way or the other as to what attitude people take when confronted with a terminal illness. How would we all react when confronted with it? We probably do not know.
First, we have had a debate about the six months, and I am incredibly unkeen to revisit the six months because I do not think that that was the frame within which the noble Lord, Lord Moylan, tabled his amendment. His amendment is about what is to be told to the patient rather than whether six months is right—I am gratified that the noble Lord, Lord Moylan, is nodding. I will focus on the issue: how should the patient be told? His amendment is in Clause 5, which is about the preliminary discussion. It requires the doctor conducting the preliminary discussion to discuss the person’s diagnosis and prognosis. It requires the doctor to refer to any treatment available to the patient, and the likely effect of the treatment, and it requires them to go through
“all appropriate palliative, hospice or other care”—
it is not just palliative and hospice care; it is other care as well—
“including symptom management and psychological support, and offer to refer them to a registered medical practitioner who specialises in such care for the purpose of further discussion”.
It is a detailed discussion about the prognosis, diagnosis and likely effect of treatment.
I was struck by the speech made by the noble Baroness, Lady Watkins. The idea that you are told you have six months to live, and that is it, is extraordinarily unusual. The idea that this happens is very unlikely; that it could happen in this context seems to me to be extraordinarily unlikely. Noble Lords will be aware that, in Clause 7, there must be a record kept of this conversation. The iniquity that one is trying to deal with seems to me to be unlikely to arise.
Should we be putting into the Bill the specific statistical material that has to be given? If you are relying on a median or an average, do you have to say that you are doing that and what the variations are? No, I am not in favour of that. There is a power for the Secretary of State, by codes of practice or guidance, to give indications as to how it should be dealt with. I trust doctors more than many people in this debate. It would be unhelpful to put in words such as those in the amendment into the Bill, so I am against the amendment.
On a completely separate issue, we have debated the question of the prognosis and the reason for the six months. I strongly adopt the words of the noble Baroness, Lady Noakes, that this is not the view of one person; this is the view of two doctors and a panel of three. This is not just a question of one prognosis and it is over. That is an issue that we dealt with previously. I am delighted that the noble Lord, Lord Moylan, was in a position to move the amendment. I am sorry to say that I do not agree with it.
Baroness Finlay of Llandaff (CB)
Does the noble and learned Lord recognise that, if the earlier part of the Bill and this clause had compatible wording over the progress and disease trajectory of that individual patient, that would make it easier for patients to make a decision and much easier for doctors having those conversations, whether it is the first conversation, the assessment or the independent doctor? It would also allow changes in medical science, which happen very rapidly, to mean that people were not stuck with the wording in the Bill. It would allow changes in information giving. So will the noble and learned Lord consider revisiting the word “prognosis” and clarifying it better in the Bill?
Lord Falconer of Thoroton (Lab)
I did not quite understand the question, but I think the noble Baroness is going back to her amendments that we discussed previously about how you have to have regard to the progress of the disease. I think she is saying that you have to have the preliminary discussion, the first assessment and then the secondary assessment, and therefore you have time—I see the noble Baroness shaking her head, so perhaps she could raise it with me separately so that I understand it.
Baroness Finlay of Llandaff (CB)
I would be delighted to raise it outside the Chamber; it was a little more complicated than those three points.
Lord Moylan (Con)
My Lords, before he vanishes, I thank the noble Lord, Lord Carlile of Berriew, and apologise to him for not acknowledging in my opening remarks the fact that he had added his name to my Amendment 175.
I would be disappointed if the noble and learned Lord were, at this advanced stage of Committee, to agree to an amendment proposed to the Bill. He has not disappointed us; he has rejected it. The fact is that Clause 5 requires the discussion of prognosis, as he says. Any prognosis worth its salt has some data at the basis of it, and I am simply asking that that position—the spread of that data and the range, as my noble friend Lord Effingham referred to it—should be a part of that discussion so that people understand that, if they are told they have so many months to live, that is not a prediction but, in technical terms, a median based on underlying data. That data should be disclosed.
This is an unusual debate for me because it is the only one in which I agree with everything that everybody—apart from the noble and learned Lord—has said. I even found myself agreeing with the noble Baroness, Lady Jay of Paddington, that the language of combat and struggle is really not appropriate for people who are suffering from cancer. I never use it myself and, although I quoted Professor Gould using it in my speech, it is not the natural language that I would propose.
I agree with the noble Baroness, Lady Royall, that of course simply talking about positive attitude, and indeed attributing moral value to that, is one aspect only of the management of the diagnosis one might find oneself facing. I am not a Christian Scientist, and I certainly believe that medical treatment—the most advanced medical treatment one can get hold of—is absolutely crucial and almost certainly much more important.
I agree to some extent with the noble Baroness, Lady Hayter, that it is possible for some clinicians at a specific time to be able to tell simply by looking at people that they are not going to live very much longer. But the evidence we have—there are studies about this—is that that is true where there is a very short time left to live, of 14 days or less. People with 14 days or less to live are, in my view, unlikely to have access to the provisions of this Bill simply because there is quite an elaborate bureaucracy attached to it through which one has to pass, and that takes time. The key thing for this Bill is the six months written in it. It is that that we have to look at, and six months prognoses are not particularly accurate. Where there are medians, it is important to understand the basic data.