Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 3 & Committee stage
Wednesday 26th January 2022 Lords Chamber

[Baroness Wheatcroft (CB)]

Yes, Lord Mackay. Your Lordships can see how nervous it makes me feel! I think that, in this particular situation, private Members’ Bills have failed, and the Government show absolutely no intention of moving on something that is so crucial to so many people. Although you have to be wary of opinion polls, it seems perfectly clear that opinion in this country has moved and that a majority of people would like not to have assisted dying made mandatory but to have the choice at the end of life of how they say farewell.

Like others, my inbox has been inundated, and I have tried to reply to one or two of those who have been opposed to the proposal from the noble Lord, Lord Forsyth. One doctor, Dr Whitehouse, a palliative care doctor, wrote to tell me that nobody had come to him whom he could not help, and it was very important that everybody should treasure their short remaining time, and palliative care would do that and assisted dying should be resisted. I wrote back to him a week ago through email—he gave me his email address—and said that I wanted to know more. I am a firm believer in palliative care; it works wonders, and it has improved hugely over the years, but I do not believe that it works in every case. I asked him whether it worked, for instance, with motor neurone disease, or whether it could cope with the incontinence which makes the end of life such a discomfort and an indignity for so many people—or did the help that could be provided mean only understanding and care, which does not necessarily deal with the indignity at all? Noble Lords will not be surprised to learn that I have not heard back from Dr Whitehouse, and neither do I expect to.

This matter polarises people, but the amendment is asking merely that Parliament should have the chance to debate a matter that is crucial to parliamentary Members and, more importantly, the constituents who vote for them. I support both amendments.

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare all my interests in palliative care and as a director of Living Well Dying Well and vice-president of Marie Curie and of Hospice UK. I have two amendments in this group. I do not intend to lay out all the arguments against the amendment proposed by the noble Lord, Lord Forsyth. Indeed, the noble Lord was right that we had only three-minute speeches when we debated the Bill proposed by the noble Baroness, Lady Meacher. However, I remind the Committee that the Bill put forward in the other place by Rob Marris MP actually failed—it was voted out—and it was one that came high in the ballot, so if it had been voted in it would have progressed quite well.

Personally, I do not think this is the place for us to debate assisted dying, which would need a change in the criminal law. The procedural issues have been clearly explained by the noble and learned Lord, Lord Mackay of Clashfern. The noble Lord, Lord Forsyth, spoke about the right to die. I remind him that everybody is going to die—it is an inalienable right. What he is talking about is licensing some people to provide lethal drugs to others, against a set of criteria. I remind him that three-quarters of people in my branch of the profession—specialist palliative medicine—who look after these patients all the time, not only do not want the law to change but do not want anything to do with it in the event it changes.

The claim has been made that palliative care is not a panacea. Assisted dying is not a universal panacea either. There is a 6.9% complication rate in Oregon, which is experimenting with the fourth drug cocktail in seven years. I remind the Committee, because I have made a plea for specialist palliative care, that it is estimated that 118,000 patients each year in the UK cannot access specialist palliative care. That is why I have an amendment tabled to the Bill, which I hope the Government will look favourably on. Areas where assisted dying has happened rank low on end-of-life care compared to the UK. Areas with assisted dying have dropped in the rankings for palliative care since 2015 compared to areas which did not change the law.

Amendment 203 is well intentioned and builds on all the moves for advanced care planning that are spearheaded by specialist palliative care. I know it was drafted originally with Marie Curie’s help, because it initially discussed with me whether I would table it, but I did not and did not sign it for two reasons. First, it is imperative that such conversations begin early, are part of ongoing care and do not become a tick-box exercise which says, “Conversation offered—tick”. That risks all the dangers of what happened with the Liverpool care pathway. Sadly, I have seen all too often a patient being told, “But that’s what you said you wanted”, when their needs have changed. Much research on advanced care planning has been done by my colleagues in my team in Wales. This has now informed some of the moves that are happening. Having open conversations is something that patients want, and the clinicians trained in communication skills want to provide those openings and do.

The second reason that I was concerned about this is that excellent draft guidance on advanced care planning has been developed by NHS England and NHS Improvement, and is near to being published; I had the privilege of being consulted on the final draft. It sets out core principles that such planning must always be a voluntary process and that every effort must be made to help someone express their views and preferences. The person is central to developing and agreeing their advanced care plan with agreed outcomes that are shared in partnership with relevant professionals. They have a record of the shareable plan and are encouraged to review and revise it so that they can change their mind at any time. In addition, anyone involved can speak up if they feel that the principles are not being followed.

The very sensitive approach set out in the guidance recognises that people have different levels of preparedness for such conversations; that their perception of their illness evolves over time; and that, in the crisis of being given a diagnosis or told of disease recurrence, the views that a person expresses may subsequently change as they reframe their experience. The first step is to start with an exploration of how much the person wants to be involved, what matters to them, and the pace and language that matches the person, as well as that they are listened to and understood.

The amendment asks for a “relevant authority” to

“have regard to the needs and preferences recorded … in making decisions about the procurement of services.”

I hope that the Government can see that, by providing specialist palliative care as a core service, the type of bureaucratic delays that would be involved in procuring services would be completely replaced by a rapidly responsive specialist service that can address the person’s needs in all domains. The amendment also uses the term “relevant person”. If it were used as in the Mental Capacity (Amendment) Act, that person could turn out to be the care home manager, who may actually have competing interests and therefore is inappropriate.

A comprehensive survey of over 2,000 people by Cardiff University’s Marie Curie research department reported that people listed their top priorities towards the end of life as timely access to care at 84%, and being surrounded by loved ones at 62%. Being home was a priority for only 24%.

This is a well-intentioned amendment but it has now been replaced by the extensive consideration of the consultation and production of comprehensive guidance.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Wednesday 26th January 2022 Lords Chamber

[Baroness Greengross (CB)]

My Lords, I will speak to Amendments 133, 139 and 161 in my name, and to Amendments 143 and 144 in the name of the noble Baroness, Lady Finlay, to which I have added my name.

Amendments 133, 139 and 161 are intended to clarify the role that continuing healthcare—CHC—will play, along with other commissioned services. The Continuing Healthcare Alliance has raised concerns about the provision of NHS continuing healthcare. The package of care is there to support people with ongoing and substantial needs in England. Examples of conditions for which someone may qualify for CHC include Parkinson’s, motor neurone disease and dementia, but there are many others as well.

Amendments 143 and 144 would strengthen the power of NHS England to give directions to integrated care boards. They would help to ensure national consistency of CHC services, which, sadly, is not always the case at present. When the Bill was debated in the other place, the Minister, Edward Argar, responded to a similar amendment as follows:

“It is right that clinical commissioning groups, as they are currently called, are held accountable for NHS continuing healthcare within their local health and social care economy. That will also be the case with the national move to integrated care boards, where the board will discharge those duties and be accountable for NHS continuing healthcare as part of its NHS commissioning responsibilities.”—[Official Report, Commons, Health and Care Bill Committee, 28/10/21; col. 825.]


Given this earlier response, I believe that it is the intention of the Government to improve the national delivery of continuing healthcare and to ensure more consistent delivery throughout England. The intention of this group of amendments is to clarify that in the Bill, so I commend Amendments 133, 139 and 161.

[Baroness Finlay of Llandaff (CB)]

My Lords, I added my name to Amendments 133, 139 and 161, which were so ably introduced by the noble Baroness, Lady Greengross, and others. I also have Amendments 143 and 144 in my name. All the amendments aim to tackle the accountability gap: the inconsistency of provision of continuing healthcare across different parts of England.

The noble Baroness, Lady Greengross, alluded to some diseases, but this goes much wider. There are people with spinal injuries and long-term multiple sclerosis and there are people who have had strokes. They all need ongoing long-term healthcare at a high level—way above the level that can be provided by social care.

The problem is that the accountability gap exists and there is inconsistency in the quality of provision, with eligibility criteria being interpreted differently in different areas. Amendments 143 and 144 aim to strengthen the powers of NHS England in the Bill to give direction to integrated care boards, with the particular aim of closing this accountability gap. Within the existing system, NHS England is responsible for holding clinical commissioning groups accountable for their discharge of continuing healthcare and functions.

In the reformed system proposed by the Bill, NHS England will hold these boards accountable in a similar way, but I question whether it has adequate authority both in the current system and the proposed system and whether the levers available to it to act meaningfully are adequate. While the intention prior to the Lansley reforms was to give NHS England powers to intervene to create meaningful change in practice, the powers were restricted to high-level interventions where there was a failure of governance at the highest level, rather than interventions where a CCG was failing to implement good practice or to adhere to national policy.

The 2018 report by the Public Accounts Committee in the other place supported these concerns and stated:

“NHS England is not adequately carrying out its responsibility to ensure CCGs are complying with the legal requirement to provide continuing healthcare to those that are eligible.”


There are limited accountability mechanisms and there is inadequate data collection at present. These amendments seek clarification and would drive long-overdue improvements in the quality and, importantly, the consistency of the way that continuing healthcare decisions are made and the process is administered, with the aim of improving outcomes and reducing the strain of applying for continuing healthcare for people who live with complex health needs and for their loved ones, in particular their family and carers.

[Baroness Pitkeathley (Lab)]

My Lords, I very much support the noble Baroness, Lady Greengross, in her amendments. We should be clear that continuing health needs are ignored by assessors because of the issue of who will pay. I have experienced this twice with neighbours and friends. It was clear to me that both patients had complex needs, mentioned by the noble Baroness, Lady Finlay, and had undeniable continuing care needs, so I was puzzled as to why the families were working out how to fund places for their relatives. They had never been told of the possibility of continuing NHS funding. I suggested that they quote the legislation back to the assessors and of course when they did so they found that funding would be provided—and some years later it is still being provided. Without this chance encounter with me, and asking the right questions, those families would have been denied the funding that is their right.

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[Lord Clement-Jones (LD)]

My Lords, I support the amendment in the name of the noble Lord, Lord Hunt, to which I have added my name. He is not the only one to be concerned about this part of the Bill. My noble friends Lady Brinton and Lady Harris have delivered powerful support and a demonstration of why we have to be absolutely vigilant about access to, and sharing of, personal data, as they were so successfully on the police Bill. We must not repeat those experiences.

We will talk further and more comprehensively about data later in Committee. In the meantime, Amendment 145, as the noble Lord, Lord Hunt, explained, tries to illicit from Government their intention behind these disclosure powers for ICBs in new Section 14Z61 in Clause 20 with regard to information, whether personal data is involved and what the safeguards are. New Section 14Z61 sets out the provisions whereby

“An integrated care board may disclose information obtained by it”


in the exercise of its power. As the noble Lord, Lord Hunt, said, the catch-all condition in new Section 14Z61(1)(f) under which disclosure can be made

“for the purposes of facilitating the exercise of any of the integrated board’s functions”

seems remarkably open-ended. My noble friends have also pointed out the sheer width of paragraphs (e), (g) and (h), which go even further than those originally proposed in the police Bill and raise crucial questions for the Minister to answer.

Amendment 145 aims to ensure that an ICB cannot disclose information where this is patients’ personal data. In my last intervention on the group headed by Amendment 26, I, like the noble Lord, Lord Hunt, expressed my support for the NHS’s digital transformation programme. It is clear, as the noble Lord says, that there is great potential growth in new technologies using data such as AI and machine learning. However, there is an absolute imperative to have the right safeguards in place in relation to duties and data. This is very much aligned with transparency in public information and engagement, particularly in this context. Transparency, choice and consent are crucial, as the noble Lord, Lord Hunt, says.

We have all looked forward to the Goldacre review, but I am not convinced that it will range wide enough and cover the governance arrangements needed to preserve and enhance public trust in the sharing and use of health data, but we will see. I look forward to the debate towards the end of Committee when we discuss the wider aspects of the Bill, when we will produce further illustrations of the rather cavalier way in which the Government, the department and the NHS have treated personal data. Not least of these is what has been called the attempted GP data grab of last year. In the meantime, I hope the Minister will be able to give assurances that the powers in Section 14Z61 will be very limited.

[Baroness Finlay of Llandaff (CB)]

My Lords, from the perspective of a clinician, I support this amendment very strongly. If it is not adopted, I can see it being imperative, in any doctor’s consultation, to warn the patient that their data could be accessible and to be very careful about what is recorded in the clinical record. Very often, patients come to see a doctor, possibly at a very early stage of slightly disordered thinking or because they have undertaken a potentially high-risk activity, often in the sexual domain, and are worried that they may have contracted some condition or other. If you inhibit that ability to see a doctor early, you will further drive people into whatever condition is beginning to emerge, so it will not be known about until later. That applies particularly in mental health, where early intervention might prevent a condition from escalating.

I can see that, without an amendment such as the one proposed by the noble Lord, Lord Hunt of Kings Heath, every clinical consultation will have to be conducted with extreme caution, because of potential access to data.

[Lord Bethell (Con)]

My Lords, I an enormously grateful for this debate, because this clause and related clauses are critical both to achieving the digital transformation aims of the NHS, referred to by the noble Lord, Lord Clement-Jones, and to getting the healthcare system to work better together.

I am also grateful for the humanity and testimony of several noble Lords, exemplified by the noble Baroness, Lady Finlay, who spoke movingly about the practicalities of patients going to see their doctors. I know from my own life and from my family how important it is to protect those relationships.

That is why I would like to hear a little from the Minister about what protections there are, because health data is and should be treated as a special category of data. What additional protections are there in the use of health data, including in the common law duty of confidentiality, the role of the National Data Guardian, the way the Caldicott principles will be used and the national data opt-out? What reassurances do we have that those special considerations will apply to this clause and its related components?

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Monday 24th January 2022 Lords Chamber

This is a very curious group. I shall just mention the two amendments to which I have put my name—though I think the noble Lord, Lord Rennard, has said it all—and refer to the importance of self-management. The evidence in favour of self-management is overwhelming. I refer the House to the data analytics team at the Health Foundation, who have begun to fill some of the evidence gap in relation to this. They have shown that the patients most able to manage their health conditions have 38% fewer emergency admissions and 32% fewer A&E attendances than those least able to manage their conditions; they also have 18% fewer GP appointments. This is the first study in the NHS to have demonstrated an association between a patient’s ability to self-manage and the use of services across primary and secondary care. That is an important start to an evidence base. The Minister has not been sympathetic to many amendments; it has been warm words but little action so far. I hope that, on our fifth day in Committee, on these two amendments put forward by the noble Lord, Lord Rennard, the Minister might just say that he will accept them.

[Baroness Finlay of Llandaff (CB)]

My Lords, this has been a very interesting short debate. I have two issues to raise. I am grateful to the noble Lord, Lord Hunt, for having raised perverse incentives and, indeed, the danger with perverse incentives that senior consultants with a great deal of experience could be absent from NHS premises when undertaking work such as surgery in other premises; they would therefore not be available to their NHS patients in the event of a problem and some surgery being left to more junior members of staff.

The other issue is the difficulty of ensuring true consent and information for patients when they are offered choice, with respect to their awareness of the staffing levels in the premises to which they will be going. In some of the private providers, there is not very comprehensive out-of-hours medical cover—particularly at night—with somebody on site. There is also a problem that, if a patient should develop a complication, foreseen or even unforeseen, and is in need of an intervention, they may then need to be transferred to a local NHS intensive care unit. In that event, it would be important for the money to follow the patient. If that intensive care unit is out of the area from which the patient has come, I hope that the regulations will allow for appropriate funding of that NHS facility.

[Lord Warner (CB)]

Is the noble Baroness aware that, during the arrangements in which there were contracts with the independent sector to provide elective surgery in independent treatment centres, the quality of that care was both reviewed by the then Chief Medical Officer, Liam Donaldson, and looked at, with evidence taken, by the Health Select Committee? They found that claims about shortcomings in these private facilities were exaggerated—their provision of services was equally as good as that of the NHS facilities.

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[Baroness Barker (LD)]

Following on from that, one point that we should take into account is the extent to which the private sector and the NHS rely on the same workforce. That is particularly the case in relation to consultants and less so for nurses.

While we can argue about the location, price or quality, perhaps, of treatment and aftercare, the key issue is diagnostics, which is a huge issue at the moment in the NHS. I have a slightly different take on that. For all of my life, my mum was deaf, and I have to say that the quality of NHS hearing aids was about 10 years behind the private sector’s—but people trusted them; they trusted the quality of the diagnostics and the advice that they were given. We have moved a long way in terms of diagnostics for eyecare and hearing aids, but it does not matter where that happens; what the general public want to do is to be able to trust the quality and independence of the diagnostics that they get. If we can do that, I rather suspect that the general public, in the wake of the pandemic, when they see the NHS struggling in all sorts of ways to make up for two years in which their staff have been pulled around, sometimes away from their specialties, would be quite forgiving—as long as there are some very basic agreements about how it will work and the integrity of the work and systems.

[Baroness Finlay of Llandaff (CB)]

I am most grateful to the noble Baroness, Lady Barker, for adding some clarification to the point that I was trying to make. I am not for or against any system; all I am saying is that the arrangements have to be in place so that nobody is jeopardised—and indeed, in the event of a patient being transferred from a private facility back into the NHS, that part of the NHS is appropriately recompensed, particularly if the patient comes from a long way away.

[Baroness Walmsley (LD)]

My Lords, the problem to which the noble Lord, Lord Warner, is suggesting a possible solution is the result of long-term underplanning and underfunding of staffing in the NHS, and underfunding also of the capital budgets of hospitals, which sometimes have to choose between mending the roof and buying a piece of equipment that would get patients through the system more effectively and efficiently.

On the comments from my noble friend Lord Rennard on self-management, it is of course not just better care that that produces—it is also very cost effective. I draw noble Lords’ attention to page 3 of the Bill, line 13, where one of the three things to which NHS England has to pay regard about the wider effects of its decisions is

“efficiency and sustainability in relation to the use of resources”.

The resources are much better and more efficiently used if the patient has a decent choice of the equipment and treatment that is most effective for them, and it is often a great deal cheaper.

I also agree with the noble Lord, Lord Lansley, that we need the guidance. We need to see it before Report, and I hope that the Minister will be able to provide that.

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[Lord Kakkar (CB)]

My Lords, I support Amendment 173 in the name of the noble Baroness, Lady Merron, to which I have added my name, and I broadly support the amendments in this group.

Many noble Lords have identified the question of workforce as the most important single issue that the Bill has to address. Without effective workforce planning, the NHS, as we have heard—and, indeed, the care system—is in peril. Previously, our country and the National Health Service have depended on overseas doctors and nurses to come and fill large numbers. That has been the principal basis of workforce planning for many years—indeed, decades. But that is no longer a viable option. The World Health Organization has estimated that, globally, there will be a shortage of some 18 million healthcare professionals by 2030. That will be a particularly difficult challenge across the globe, and it means that we can no longer depend on importing healthcare professionals to meet our ever-increasing needs. This is well recognised by all who are responsible for the delivery of healthcare and, indeed, by Her Majesty’s Government.

The question is: how can we dependably plan for the future? Unfortunately, it has to be accepted—indeed, it has been accepted in this debate—that planning to date has failed miserably. That is not a malicious failure, but it is a reality, and one that we can no longer tolerate. That is why amendments in this group that deal with the requirement for independent planning and reporting on a regular basis to provide the basis for determination and projecting future health and care workforce needs, are appropriate—indeed, essential.

My noble friend Lord Warner raised a separate issue about a group of amendments that will come later in the Committee’s consideration, which propose the establishment of an independent office for health and care sustainability. This is a recommendation of your Lordships’ ad hoc Committee on the Long-term Sustainability of the NHS and adult social care, chaired by my noble friend Lord Patel. It is this emphasis on ensuring that there is independent, long-term planning and projection that can provide the fundamental and accurate foundations for workforce planning. We need a broader assessment of what the demand for healthcare will be, and that demand is complex and driven by not only demographic change but changes in the way that we practise, changes in expectations, adoption of technology and changes in working practices. That all needs to be brought together to provide the foundations for planning. Without this emphasis and this obligation secured in the Bill, the NHS and adult social care in our country will not be sustainable.

I very much urge the Minister, in considering this group of amendments, to help your Lordships understand why it would be wrong to secure this emphasis in the Bill. If Her Majesty’s Government are unable to secure this emphasis in the Bill, how can they reassure noble Lords that the failures in planning that have dogged NHS performance with regard to workforce over so many years will not be repeated in the future?

[Baroness Finlay of Llandaff (CB)]

My Lords, to state the obvious, without a workforce plan we cannot have a workforce. Amendment 170 certainly seems to get to the heart of the issue, which was so well introduced by the noble Baroness, Lady Cumberlege, and my noble friend Lord Stevens.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Committee stage
Thursday 20th January 2022 Lords Chamber

If we could forecast the next NHS restructuring Bill in a year of two, do we think much will have changed? I am afraid that it will not have, and this is why legislating is about the only way we can go forward, and why I support the noble Lord, Lord Black.

[Baroness Finlay of Llandaff (CB)]

My Lords, this has been a really interesting debate and it made me think of Aneurin Bevan’s original vision, which incorporated the concept of dealing with the problem and then secondary prevention in rehabilitation and concepts of convalescence. After this debate, I am tempted to go back and read again In Place of Fear, because it is a very short book but it is worth reading.

There seems to be a theme coming through here really strongly. If we do not integrate these services and pull them together, we will never get not only the primary prevention but the secondary prevention which, as the noble Lord, Lord Black, highlighted, is so important. You do not just fix the problem; you prevent the next set of problems coming along.

I was slightly alarmed to note that in 2018 alone, there were over 6,000 deaths attributed to falls. A lot of those were on stairs. They were just simple trips on steps, yet they resulted in deaths. It took me back to when I worked at the Westminster Hospital, which, of course, is no longer across the road. Somebody tripped on the steps of the Tate and subsequently died from a head injury after hitting the concrete. One sees that at stations and so on, too, and we now see it with these scooters, where people scoot into trees and lampposts.

Anyway, to return to the subject of the amendments, the reason for my Amendment 100 is precisely to promote that rehabilitation and remind everybody that rehabilitation is not just a medical and nursing issue. It involves many different professionals, and volunteers quite often, at different levels. A rehabilitation plan at the ICS level could provide the co-ordination required, across different settings and services, to properly support early discharge from hospital, provide access to multidisciplinary teams and incorporate the psychological support that is needed. At the moment, things are organised in condition-specific medical silos, and we have already heard about the fragmentation of provision.

We need to respond more effectively to the needs of people with long-term conditions. When we come to measure outcomes, it is much easier to immediately measure the outcomes of an intervention. The outcomes from long-term secondary prevention are much more difficult to measure and quantify, particularly in a population that has multiple pathologies. So there has been poor data collection in part because it has been very difficult.

A simple example is that NICE guidelines suggested that over 1 million people with COPD every year should be referred for pulmonary rehabilitation, but only 15% are referred. We need to understand why. These are people who are breathless. They are getting chest infections and becoming oxygen dependent—so the consumption of NHS resources goes up. After a stroke, people have very marked rehabilitation needs in many different areas. That may be physiotherapy, occupational therapy, speech and language therapy and so on, going much more widely.

We also have a problem with our housing, because many people are not in accommodation that is suitable for them to go to when they are discharged from hospital. It has been estimated that there are 10,000 people in hospital at the moment who do not have a suitable home to go back to—hence the problem of where they go after hospital. So it is not only about providing a social care workforce to go in. We have already debated last week the problem of housing.

I do want to speak specifically to Amendment 51A in my name and the name of the noble Baroness, Lady Jolly. That is about having responsibility for every person present in an area. If we take the south-west, which is dependent on tourism, it goes from relatively low populations to absolutely bursting at the seams with holidaymakers. We have all seen it. These areas have an additional problem: when people are on holiday, their guard is down, they are less vigilant about what they do and they are less risk averse. Going back to falls, they are much more likely to have a fall or an accident. People fall off cliffs, fall down surfaces and so on. All of a sudden, in the tourist season, these people are at higher risk of something going wrong. They often go away and forget to take their medication, or they take something that interferes with it and end up with different side-effects and so on. They put a huge pressure on the emergency services in the area, so I am quite concerned at the way the funding might flow, in the way this Bill is written. We could inadvertently find that some areas are incredibly pushed at certain times of the year because of the way the population moves. I hope that will be taken into consideration.

[Baroness Whitaker (Lab)]

My Lords, following the impressive, high-calibre tour d’horizon from the noble Baroness, Lady Finlay of Llandaff, I rise to support the importance of proper and full rehabilitation as in Amendment 100, again supported by the Royal College of Speech and Language Therapists. Perhaps I should have declared, at my last intervention in Committee, that I speak as a vice chair of the All-Party Parliamentary Group on Speech and Language Difficulties—I apologise.

Very briefly, an annual plan, as in Amendment 100, would ensure that rehabilitation is explicitly integrated. Rehabilitation spans many disciplines, as the noble Baroness, Lady Finlay, said. It is what enables those who have degenerative diseases, strokes, cancer, autism and learning difficulties, to name only a few, to communicate—how essential is that for even minimal well-being?—as well as helping people to, for instance, swallow without choking and stay alive. As ever, it is the vulnerable who suffer when these structural underpinnings to ensure joined-up, consistent care are not there. I hope the Government will adopt these amendments.

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To do anything less than accept these amendments is to demean the work and statutory role of NICE and its experts, to frustrate consultants trying to do their best under those guidelines for their patients, and to deny patients their fundamental right to access to treatment as approved by NICE. I look forward to hearing the Minister’s response and hope that it will be helpful.

[Baroness Finlay of Llandaff (CB)]

My noble friend Lord Patel has had to leave because of pre-booked travel, but he has given me the honour—and it is an honour—of having his brief speaking notes, from which I would like to start, and then move on.

Before I get on to that, I think it is important for us to remember that NICE was set up to establish the evidence base behind what we do. Before NICE was established—and I have worked with Deirdre Hine, who was very involved in setting it up when she was Chief Medical Officer for Wales—people were doing things because they had always done them and because they liked doing them that way, with no evidence base, and often they were doing things that made situations worse, not better.

As Lord Patel wanted to stress, clinicians have a strong belief now in evidence-based healthcare, and guidelines are critical to ensure high and consistent levels of evidence-based clinical practice across the NHS. The guidelines developed by NICE can be adapted to the local situation, and they are also under review. I should declare that I have served for three years as vice-chair of the group looking at ME/CFS guidelines, and it was very instructive to see the depth to which everything was explored and the rigour of the processes; to the point that, when we were asked to review again some papers, we went back to the beginning and reviewed them all over again. Interestingly, in doing that, we slightly downgraded their scoring, rather than upgrading it, which is what had been expected. I was really impressed at the rigour of the process, including the health economics impact.

That experience has been behind the push to make sure that there is compliance. My proposed amendment would be a way of assessing compliance with the guidelines as predetermined and set out in the NHS mandate. The mandate could select a few that would act as proxy markers across the piece and include a date line, so that their implementation across the country could be benchmarked. It would not increase the workload, because it could draw on existing sources of data in the NHS. As the Minister has said, data is our key to understanding and unlocking things.

The noble Baroness, Lady McIntosh, in her comprehensive introduction to this group of amendments, spoke about type 1 diabetes and highlighted that, in some areas, the adoption of continuous glucose monitoring is as low as 0%, whereas in other areas it is up to 20%. There are a couple of other emerging areas; one is in atrial fibrillation, where direct oral anticoagulants have made warfarin a drug of the past. Yet the variation between clinical commissioning groups’ adoption of the guidance is quite horrifying. There is a threefold variation in prescribing, so there are areas of the country where a lot of patients are being denied an intervention that has been shown to be beneficial compared to what was done before.

We have already alluded to another emerging area: the new biologics. On the face of it, they are very expensive, but they are often remarkably effective—they can revolutionise the management of some diseases. We have a budgetary problem here, because the NHS budgets are year-on-year, and the face-value cost of the new biologics is very high; but if you look at the whole lifetime cost of healthcare interventions then they come out much lower. Take the example alluded to, of Crohn’s disease, and consider the cost of someone having their bowel removed, who might then end up on total parenteral nutrition; it is not only the cost of that nutrition but the costs in all other domains in their life, and the lives of their family. In comparison, the new biologics can rapidly get this disease’s process under control and revolutionise things.

The proposal is to give the CQC the powers routinely to address the adherence to guidelines—that would be specified by the NHS mandate, so a national standard could be set—and introduce a reporting metric using current data sources as a starting point to establish a benchmark. I want to stress, as I know does my noble friend Lord Patel, that we are not advocating for guidelines to be mandatory—that would not be right, because each patient is different and individual—but we are asking for a system to be introduced that gives powers so that there can be scrutiny of whether the guidelines are being adopted, because their adoption would narrow the gap in inequalities. We both feel that we need to commit to address this in this important legislation, because it is a way of achieving tangible action to ensure equity in access to quality in healthcare.

[Lord Hunt of Kings Heath (Lab)]

My Lords, I have added my name to the three amendments that the noble Baroness, Lady McIntosh of Pickering, has referred to. I was the first Minister for NICE, going back to 1999. At that time, we were confronted with a paradox which continues to this day, which is that, although the NHS is full of innovation and we have an incredibly strong life sciences sector and industry, the NHS is also very slow to adopt those innovations. NICE was developed to speed up the introduction of effective new medicines and devices. Right from the start, we had a problem with the NHS being reluctant to implement its recommendations and, within a few months of it starting, a regulation had to be put through which required it to implement them within 90 days. That has been slightly modified since, but none the less, it is still in being. The NHS has become very adept at finding ways to get round this through the various blocks that have been put in at CCG level—the noble Baroness, Lady Brinton, explained clearly the kind of blocks, devices and bureaucratic machinations that are put into place.

The result is that we continue to be very slow to introduce proven new technologies and medicines. NHS patients are very disadvantaged compared to patients in most countries. It then impacts on pharma and the devices industry—I think that pharma is more reluctant now to introduce medicines and develop R&D in this country as a result.

The Minister knows that there is an agreement—it is called VPAS at the moment—whereby NHS expenditure on drugs is capped and industry pays rebates if the cost goes over that cap. Given what I have always thought to be an imaginative agreement and given that industry is essentially underwriting some of those additional costs, surely there must be a better way to approach this which would allow the NHS to implement NICE recommendations enthusiastically, rather than essentially putting into place blocks.

I doubt that we are going to spend two and a half hours on this group of amendments, but these are just as important as the last group, because they go to the heart of whether NHS patients get access to the drugs, devices and technologies that they should. At the moment, they do not. I hope that the Minister might be prepared to take the amendment away. Legislation is the only way that we can see of leveraging the kind of change we need.

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[Lord Lansley (Con)]

Given NICE’s remit, it might be the Welsh Government as well, but the noble Lord may well be correct. We are all surmising, but I think we are probably not too far off the mark. It gave us an opportunity to respond to that.

So far as the amendments are concerned, the proposition that approved treatments should be adopted by the NHS is a proper one. What, of course, has not been brought into the debate is that the world has moved on, even in recent years. NHS England has taken what I think is an appropriately substantial interest in the approval of treatments, the uptake of treatments and their adoption by the NHS. When it started out, people said, “Oh dear, NICE is going to approve a treatment and then NHS England is going to tell people not to use it because it is going to cost them a lot of money.” In fact, we all agreed in the debates on the Medicines and Medical Devices Bill that there was everything to be said for NHS England, NICE and the pharmaceutical industry working together early, proactively, for the planned introduction of new medicines, including taking account of their cost. That is an NHS England role, not a NICE role. NICE does gold standard appraisals, but it does not take responsibility for the fiscal consequences of those appraisals, so all these things need to be put together. The pricing decision should not be something that comes out at the end.

One of the things I have been going on about for a decade or more—actually, 15 years—is that we should not end up in a position where there is an effective medicine that is properly approved by the MHRA and authorised for use; clinicians can use it and they know it is the right thing for their patient; but, because of the absence of an appropriate pricing decision, the answer to the patient is “no”. We should not arrive at that position. With NHS England and NICE working together with the pharmaceutical industry, we stand a better chance of the answer not being “no” in those circumstances as long as the resources are, indeed, available.

I do not think, on the face of it, that we should be legislating to change the medicines mandate from where it is now. My noble friend Lady McIntosh, in introducing her Amendment 54, referred to devices. The amendment does not refer to devices, but it should refer to devices. My further question to my noble friend the Minister is: when are we going to get a proper funding mandate on devices, which I think I was promised during our deliberations on the Medicines and Medical Devices Bill but we have not yet formally had it? Some good work has been done on some devices each year, but I am hoping that we will get a proper funding mandate on devices.

On formularies, my noble friend did not actually refer to the British National Formulary. Of course, NICE has had responsibility for the BNF for about seven or eight years, and even if it is not a legislative method, there is everything to be said for the NHS and clinicians looking to the BNF and NICE’s role in the BNF.

My noble friend and the noble Baroness, Lady Finlay of Llandaff, were quite right about the adoption of NICE guidance and standards on the use of them in clinical circumstances. However, via the regulator—the CQC—we already have a process by which the CQC looks at quality standards produced by NICE and incorporates what NICE itself isolates as the essential aspects of the standards that, in order to provide safe and effective care, must be reflected in the practice of a health provider.

My question to the noble Baroness, Lady Finlay of Llandaff, is: if she thinks that is not sufficient, how much further should the CQC actually go in adopting quality standards? At the moment, it has compromised and said, “We will take the essential steps, because those are a few, generally about five, specific things that we can look at to see whether they are being done, in which case, okay; or are they not being done, in which case it clearly needs improvement, or may not be meeting the standard.”

[Baroness Finlay of Llandaff (CB)]

The noble Lord asked me a question to which I feel obliged to try to respond, but I really want to answer the question with a question: does the CQC have enough powers to benchmark as it would want to do, and to publish those benchmarks? I hear the concerns of my noble friend Lord Stevens in relation to fear of litigation and how that is an objection to the amendments, but I am also quite worried that that is potentially a way of avoiding adopting the guidelines themselves, thereby inhibiting a change in practice and a move to best practice.

While there are sources of information that those who are very health-literate, IT-literate, and so on, can access to establish their own benchmarks about what is happening, many people, particularly those in the most deprived areas of the UK, do not have any knowledge of even where to begin looking for these things. That was the motivation behind the amendment: to try to make sure that in the poorest and most deprived areas, people would still be able to access this. That would drive up standards gently but would not create a mandated requirement that a NICE guideline is adopted, for the reasons I outlined previously.

[Lord Lansley (Con)]

I can see that my noble friend is eager to come in but I will conclude by answering the noble Baroness. I am not an expert, but I think the CQC has the powers—since it presently does it—to take account of the NICE quality standards and to incorporate specific indicators from those quality standards as part of its regulatory review. If the CQC was to attempt to introduce large-scale application of the guidance as a question in a regulatory review, I do not think the issue would be whether it had the power to do it, but whether it would make the headline conclusions it reaches in relation to healthcare providers increasingly difficult to interpret. At the moment, they are relatively straightforward to interpret. There is a small number of specific indicators in relation to services provided and they are either doing them or they are not. With guidance, it becomes much more complicated and many more value judgments have to be applied about the circumstances in which they are or are not complying. So, there is a real difficulty in going far beyond where we are now.

I will listen with great care when my noble friend the Minister responds to the questions I have asked.

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[The Deputy Chairman of Committees (Baroness Garden of Frognal) (LD)]

I call the noble Lord, Lord Low of Dalston, to move Amendment 56A—or the noble Baroness, Lady Hollins. Is the noble Baroness, Lady Finlay, moving Amendment 56A?

[Baroness Finlay of Llandaff (CB)]

My Lords, perhaps I might put in a slight plea to the Committee on behalf of the noble Lord, Lord Low. He has sat patiently through this debate for a long time. He was expecting that the other amendment would be moved and, on realising that it was not, has made every attempt to return to his place as fast as possible.

Amendment 56A

Moved by

--- Later in debate ---

[Lord Crisp (CB)]

My Lords, I congratulate the noble Lord, Lord Howarth, on introducing this very important group of amendments and other noble Lords who have made some very interesting points, such that made by the noble Baroness, Lady Morris of Yardley: this is becoming received wisdom, whereas it might have been regarded as eccentric even five or 10 years ago.

I have three points to make. First, this is a Bill about integration and partnership. It would be good to have a clear message that non-clinical groups such as the ones we are talking about are part of that, in whatever is the appropriate way—a duty or obligation or something of that sort on in the Bill—without being too specific about the detail.

Secondly, the noble Lord, Lord Howarth, made the point that this is the rediscovery of ancient wisdom, not least, as the noble Baroness, Lady Barker, pointed out, through Covid. I am talking about human flourishing going back to Aristotle and many others in the past: the merging of that ancient wisdom with very modern evidence—more evidence all the time about things such as relationships, as well as the arts and everything else that has an impact on our health.

My third point is about impact. I co-chair the All-Party Parliamentary Group for Prescribed Drug Dependence. Last year, 17% of the adult population were prescribed antidepressants. That is a huge amount: when I see such a figure, I always have to remind myself that that means that 83% of us were not. However, 17% is a huge number, and the sort of things that we are talking about can reduce that number to the benefit of the people who would otherwise be prescribed antidepressants, making enormous economic savings, time savings and so on.

[Baroness Finlay of Llandaff (CB)]

My Lords, I strongly support this group of amendments. I would like to make sure that we realise that the medical humanities as a discipline have now been introduced in many medical schools. In my own, I was rather glad that AJ Cronin’s book The Citadel was introduced in general practice, particularly because, of course, he invented Dr Finlay, but there we are.

Quite seriously, we must not forget that loneliness kills. Loneliness is a true killer; it shortens lives. If people are not moving around well, they fall more and consume healthcare resources. Therefore, having green spaces and things such as sports for health, and so on is important. There is now also a body of evidence that the new intensive care units have used in the way that they are constructed, so that there is a view of outside spaces for those patients, rather than the total sensory deprivation that occurs to them in the very noisy and difficult environment of intensive care. Of course, music is used therapeutically during procedures and so on.

In the hospice world, lots of activities obviously go on in the day centres. As my noble friend Lady Greengross said, there is now good evidence for proper physiological mechanisms that explain why contact with these different disciplines—which were considered to be outside medicine—have a beneficial effect on healing, coping with pain and distress, resolving issues, reframing what is happening to you and so on.

I would like us not to forget that loneliness kills. Importantly, so many patients have said that they have a sense of personal worth when they are still able—however ill they are—to contribute to those around them and to a sense of community. These amendments go to the very heart of being human—that is, the inherent creativity within people that has been forgotten for decades in the provision of health and social care.

I can see that there are difficulties in bringing this into the Bill, but we should commend the noble Lord, Lord Howarth, for the sophisticated way in which he has worded some of these amendments. I hope that they can be built on as we go forward. This could save a huge amount of money for the NHS in the longer term. A huge number of side-effects of drugs could be avoided. People could be fitter. There would be fewer forms. There is a great amount of optimism behind these amendments.

[Baroness Pitkeathley (Lab)]

My Lords, what I want to say follows on very well from what the noble Baroness, Lady Finlay, said. I want to quote Sir Michael Marmot. He said:

“We need to adopt a health and social care system which prioritises not just the treatment of illness but how it can be prevented in the first place. The pandemic has made it crystal clear … why public health and … social determinants of health are so important. The health and social care agenda must be rebalanced towards prevention.”


This is essentially what the noble Lord, Lord Howarth, is saying. It is not just about the treatment of illness but about preventing it happening in the first place.

I commend my own general practice in north London. In despair at the quantity of antidepressants being prescribed with very little result, it took to organising community groups to do cooking, set up friendship groups and put people in contact with each other. It puts on bring and buy sales—all with people who, perhaps, in the past, might just have been prescribed antidepressants.

I want to say a word about the charitable aspect—the voluntary sector—to which the noble Lord, Lord Howarth, referred. Charities cannot operate unless their core costs are met. My own GP practice which did this wonderful work had to go to the local authority and to the lottery to seek some funding. We have to remember that, if we want voluntary organisations to participate in these wonderful preventive services, we need to ensure that they are properly funded.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Tuesday 18th January 2022 Lords Chamber

[Baroness Tyler of Enfield (LD)]

I rise to speak to Amendments 51, 98, 141, 151 and 162 in my name and, briefly, the other amendment to which my name is attached. I shall make one opening remark. This group is all about children and young people. I know that all noble Lords feel very strongly about this issue. Children and young people make up 30% of the population but are not mentioned anywhere in the Bill.

Amendment 51 would require integrated care boards to share relevant information and data with key partners in the children’s system and to collect multiagency data from those partners. As the Bill stands, there are a number of crucial areas in which adults are, rightly, set to benefit from improvements to integrated working in ways that children are not. One of the most concerning ways in which it feels to me as though children have been an afterthought in the Bill is in the sharing of data and information.

Barriers to sharing information have been identified over many years as a key barrier to better joint working, commissioning and delivery of services but, due to the invisibility of children in existing data-sharing legislation, the children’s system faces even greater barriers to sharing information than that for adults. However, the measures to improve the sharing of information and data in Part 2 apply only to the adult system. Frankly, I find that inexplicable.

Alongside the noble Lords, Lord Bichard and Lord Hunt, to whom I am very grateful for adding their names to my Amendment 51, I heard numerous accounts of the huge challenges that the NHS and local authorities face in collecting, sharing and interpreting data as part of the recent Public Services Select Committee inquiry into child vulnerability. We heard this time and again. I quote just one sentence from the report:

“poor data-sharing between Government departments and local agencies endangered vulnerable children and their families by undermining safeguarding arrangements and preventing referrals for early help.”

As we heard from the noble Baroness, Lady Masham, following the heartbreaking murders of Arthur Labinjo-Hughes, Star Hobson and other vulnerable children in this country, it is essential that arrangements for data sharing between the health system and local authorities for babies, children and young people are urgently improved. As I have said, Part 2 focuses on data sharing between health and adult social care but does not extend this to the children’s system. It is not just that children are not specifically included in the wording of the Bill; they have been explicitly excluded.

As the noble Baroness, Lady Meacher, said, colleagues in the sector, including the National Children’s Bureau—to which I am very grateful for its help and support on these amendments—have engaged in discussion with officials on this issue. I was pleased to hear that this engagement is going well and is set to continue, but I hope to secure today the Minister’s agreement to look again at this issue, which is in the best interests of vulnerable children in this country.

Amendment 98 would add the discharge of duty as a safeguarding partner to the general duties of ICBs in Clause 20. It would require new regulations that specify how ICBs should perform the statutory child safeguarding duty when it is transferred to them from CCGs, which are obviously abolished as a result of the Bill. Although the statutory guidance Working Together to Safeguard Children already sets out the responsibilities of a safeguarding partner, the recent tragic events that I have just referred to show that a more robust legislative approach is needed to ensure that children are properly protected by a really effective multiagency safeguarding system.

It was heartbreaking, and I know that all noble Lords in the Chamber were shocked when they heard the details of the tragic death of Arthur Labinjo-Hughes, a six year-old boy who suffered prolonged abuse and was murdered by the very people who were supposed to keep him safe. I recently met the NSPCC, which highlighted government data showing 536 incidents involving the death or serious harm of a child due to abuse or neglect in 2020-21.

Sadly, young Arthur’s case is only one of far too many, but health practitioners such as GPs, nurses, midwives and health visitors are in a prime position to recognise and report safeguarding concerns; during medical examinations they might identify signs of physical or sexual abuse. Missed medical appointments can also indicate neglect. As the strategic safeguarding leader, the ICB will be responsible for ensuring that health practitioners are fully supported to work with other agencies on safeguarding and promoting the welfare of children. Alan Wood’s review from 2021, which has been discussed in the Chamber on a number of occasions, makes clear recommendations on strengthening the existing safeguarding arrangements, which came into effect in 2019, including by ensuring effective leadership, data sharing and scrutiny. The Bill offers a golden opportunity to act on these amendments to bolster local health partners’ role as a lead safeguarding partner and to embed effective joint practices that really do keep children safe.

Amendment 141 would require NHS England to assess how well an integrated care board has met the needs of children and young people in its area. In order to make a judgment about this, the amendment would require NHS England to publish an accountability framework for setting out national priorities for children and young people. Among other things, ICBs will have a crucial role in commissioning primary and community healthcare services directly for children and young people. They will play a key role in jointly commissioning services for disabled children and those with special educational needs, and in contributing to education, health and care plans, and they will be crucial in commissioning the joined-up services in the first 1,000 days of life, which the Government, to their credit, are investing in.

However, as we all know, there is unwarranted variation, with the support that children and young people receive in the health service often based on where they live rather than on their level of need. This amendment would create much needed accountability for integrated care boards and provide an overarching framework for children’s health that ICBs can work within, importantly without being prescriptive in any way about how local systems fulfil their duties.

Turning to Amendment 151, Clause 21 requires every integrated care partnership to develop an integrated care strategy. The amendment would require ICPs to consider specifically the needs of babies, children and young people when developing this strategy. I think the Minister knows my concern and that of other noble Lords—the noble Baroness, Lady Meacher, referred to it—that if we do not refer explicitly to children in the Bill, they will not be given priority equal to the adult population’s when it comes to implementation. Sadly, experience shows that when legislation does not explicitly require health systems to consider children, they are often overlooked in subsequent implementation.

Children and young people have distinct development needs. They use a distinct health and care system staffed by a distinct workforce with its own training, and they are covered by distinct legislation. Simply hoping that integrated care systems will take full account of that of their own accord will just not cut it. A more robust legislative approach is needed. Like the noble Baroness, Lady Meacher, I was also pleased to hear that the Minister in the other place recognised the importance of focusing on children and families in the new ICS structures and made a commitment that the Government would develop bespoke guidance for integrated care systems on meeting the needs of babies, children and young people. That is why I support Amendment 177 in the name of the noble Baroness, Lady Meacher, and to which my name is attached, to put this guidance on a statutory footing.

Amendment 162, on Clause 26, would require the Care Quality Commission to work jointly with Ofsted to plan and conduct reviews into the provision of health and children’s social care in integrated care board areas.

Again, I refer back to my experience as a member of the Lords Public Services Select Committee. I can confirm, as the noble Lord, Lord Hunt, will be able to, that the committee investigated the role played by the relevant regulators and inspectorates. Indeed, we took evidence from the senior leaders of the relevant inspectorates and regulators, specifically Ofsted and the CQC. Our conclusion was that, despite the very best intentions, these inspectorates do not work together closely enough or have a truly integrated approach. It is telling that our report revealed that the CQC itself called on the Bill

“to give it the ‘ability to look at [the] care of children across all settings’ as part of its regulation of Integrated Care Systems”.

I believe that the Bill should give the Care Quality Commission and Ofsted powers jointly to hold integrated care systems, service providers and local decision-makers accountable for the long-term outcomes for children’s health, including health inequalities.

I very much support Amendment 177 in the name of the noble Baroness, Lady Meacher. It has been explained and it very much goes with the grain of my other amendments.

I also strongly support Amendment 142 in the name of my noble friend Lady Walmsley, which would provide an opportunity for the Government to ensure that children and young people are prioritised on ICBs while maintaining local flexibility, which is important. An impact assessment would allow for good practice to be shared quickly and for both Houses to exercise effective scrutiny over the implementation of this legislation.

On Amendment 87 in the name of the noble Baroness, Lady Finlay, the idea of the appointment of a strategic clinical lead for children and young people’s health is an excellent proposal, but I will leave the noble Baroness to express that.

In conclusion, the Government have a very important agenda for children. There are a lot of things that they are trying to do. I strongly support most of them but I really feel that we must have an effective legislative framework to allow that agenda to be taken forward successfully.

[Baroness Finlay of Llandaff (CB)]

My Lords, this group of amendments is particularly important because it concerns the next generation, addressing children and young people’s health and social care needs. As has been said, I have tabled Amendment 87. I have also put my name to Amendments 141, 151 and 162, introduced so comprehensively by the noble Baroness, Lady Tyler. I also support the other amendments in this group.

These amendments address how the needs of children and young people aged nought to 25 will be met by the relevant healthcare and social care provision within the area of each integrated care board. A bonus from recognising this in the Bill would be the encompassing of young people with learning difficulties and autism, whom we discussed last week.

I was struck by a figure raised during the debate in the other place. According to Young Minds, 77%—more than three-quarters—of sustainability and transformation partnerships failed to consider children’s needs sufficiently. Only one of the 42 ICSs in existence listed a strategic lead for children and young people. Given the range of agencies and pathways, someone must have responsibility for the integration of services at the local level and for listening to the needs of young people.

More than 12.6 million children aged 18 and under live in England, yet the Bill reads as if it is written by adults for adults. Let us not forget that an estimated 800,000 children in England are child carers and more than 250,000 of them are likely to be providing high levels of care for their relative.

Alarmingly, the UK is fifth from bottom among 27 European countries for infant mortality, and one in six children has a diagnosable mental health condition. The number of children in looked-after care is rising and we have heard terrible stories of children whose lives have been lost through abuse and illness.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 3 & Committee stage
Tuesday 18th January 2022 Lords Chamber

Moved by

[Baroness Finlay of Llandaff]

47: Clause 16, page 13, line 38, at end insert—
“(ea) specialist palliative care services,”Member’s explanatory statement
This amendment would ensure that specialist palliative care services are a core service available equitably across all sectors.

[Baroness Finlay of Llandaff (CB)]

My Lords, to state the obvious, everyone will die. On average, one person dies every minute, and every 22 minutes a child loses a parent. Dying patients are seen in every part of healthcare, and the vast majority will have some level of palliative care need. I declare my interest as a specialist in palliative medicine over decades, and my roles with different relevant hospice and palliative care charities and being employed through the Velindre Cancer Centre.

Amendment 47 would introduce a specific requirement for clinical specialist palliative care services to be commissioned by integrated care boards in every part of England. Amendment 52 is to inform the debate as it draws on the World Health Organization definition of specialist palliative care. These amendments are strongly supported by Marie Curie, Hospice UK, Together for Short Lives, Sue Ryder and the Alzheimer’s Society.

Let me be clear; this is about specialist clinical services. General basic palliative care should be a skill of every clinician. But, until it is recognised as a core specialty, generic services will continue to view it as an extra and learning will not be integrated across all areas. Educating and training are crucial duties in upskilling others. In the pandemic, palliative care has been propelled centre stage as a driver of good practice. Specialist palliative care is a relatively new specialty, which is why it was not included in the early NHS legislation. The other truth, that everybody is born, was recognised by requiring every part of the UK to have maternity services. That has been reiterated in legislation and in Clause 16 of this Bill, along with dental and other services.

The hospice movement grew up outside the NHS, spearheaded by Cicely Saunders, who realised that bringing about change within the NHS was painfully slow. This has meant that a patchwork of services has developed in the wealthier parts of Britain. In some areas great, innovative integration with community social care is happening. But other areas of enormous need are left with almost no service, or no service at all. Now we depend on fundraising events for people to get expert support for pain and other symptoms, and for psychosocial distress. No one would advocate to have a cake sale so that a woman in obstructed labour can have a caesarean section, so why turn a blind eye to ways to improve the quality of life of those with serious and life-threatening illnesses and support their families? Debate in the other place suggested that palliative care is aftercare; it is not. It is not an add-on just before death. It must be an integral part of care so that problems are dealt with in a timely way, not left to escalate into a crisis.

In Section 3 of the NHS Act 2006, clinical commissioning groups had the same general duties as in this Bill, yet significant gaps in specialist palliative care services persist between clinical commissioning groups. Some populations fare particularly badly: people who are homeless or in prison, BAME groups, Gypsies and Travellers, LGBTQ+ people, people with learning disabilities and those living in poverty, alone or with dementia. Yet the way a person dies lives on in the memory of those left behind.

Marie Curie’s freedom of information requests to English CCGs revealed an average spend last year of as little as £19.02 per person aged over 65. Only 35% of CCGs responding offered specialist palliative care services in all care settings overnight and at weekends, yet such services are known to reduce pressure on NHS services and achieve savings by reducing the number of hospital bed days occupied and unplanned admissions.

Research from King’s College London and supported by Marie Curie reveals that of the 23 integrated care systems in England with published strategies, only six identified palliative and end-of-life care as a priority area. Five mentioned broad bereavement support and only three identified relevant measures of success, such as reduced hospital admissions.

In the pandemic, many hospices hit financial instability head on as fundraising dried up. The government bail-out was essential, and I think that everyone was very grateful. In 2008, Wales had tackled this problem head on, aware that if a hospice folded, the clinical core service would still be needed. With just over £2 per head of population investment, we moved to provide core specialist clinical palliative care through an agreed funding formula, moving to seven-day services and 24/7 advice to any health or social care professional with a patient needing help. These services cover hospitals, hospices and community, with increasing integration reaching areas where no services existed. We instigated a paediatric service and an all-Wales unified patient record across the NHS and voluntary sector providers, which I described last week.

The outcomes that we achieved warrant consideration. To quote one nurse:

“The patients have access to specialist palliative care nurses, advice and experience on the weekend, which is great, and if we weren’t there, they wouldn’t have that, and they’d suffer for it. Unfortunately, people deteriorate and die out of hours. They don’t all die Monday to Friday, nine to five.”


At the south-east Wales cancer centre, specialist palliative care is now embedded in the acute oncology service, whose audit revealed that almost three-quarters of the patients presenting to acute oncology had a level of unmet need in palliative care but were unknown to any services at the time. The majority then had same-day, face-to-face palliative care review or were referred to their local team. In the community last year, there were more than 3,700 patient contacts, over 1,000 being face to face. I remind the Committee that that covers a population of about 1.5 million. Many families have “just in case” boxes to make sure that medication is available, and the ambulance service can link in too.

For cancer centre in-patients, the palliative care audit showed that nine out of 10 symptoms improved during the patient’s stay, including pain, breathlessness, constipation and weakness, and nausea scores fell to zero by day seven. Multifactorial drowsiness persisted in some whose disease was progressing rapidly to death.

In England during the pandemic, specialist teams were in place. They have shown that they can facilitate discharge, support staff having difficult ethical and communication dilemmas, and support patients and families, but a Marie Curie survey of carers of people who died at home during the pandemic found that 76% said that their loved one did not get all the care and support they needed, 64% did not get pain management and 65% did not get the out-of-hours care.

This Bill arrives at a critical moment for improving care. In 20 years’ time, 100,000 more people will die each year in the UK. Demand is set to increase rapidly as our population ages and more people live for longer with multiple and complex conditions. The number of people dying with a need for palliative care is projected to increase by up to 42% by 2040. This cannot be left unaddressed, and the solution is at hand. I hope that the Government will finally recognise that they can improve care without increasing overall cost by adopting Amendment 47, to explicitly require the commissioning of specialist palliative care for local populations.

The NHS promised to support people from the cradle to the grave, and it can now realise that promise. I beg to move.

[The Deputy Chairman of Committees (Lord Lexden) (Con)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely. I invite her to speak.

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I am deeply grateful for the work of the noble Baroness, Lady Finlay of Llandaff, in advocating for these important issues. I hope that I can reassure your Lordships that the Government are approaching them with the seriousness they deserve. Having said that, I hear the concerns from noble Lords—indeed, the word “anger” was used—and I hope that the noble Baroness and other interested noble Lords will continue to engage with the department and my officials between now and the next stage of the Bill. Even though I understand the sincerity and deep feeling of the noble Baroness in laying this amendment, I hope in the spirit of offering further conversations that she will feel able to withdraw it.

[Baroness Finlay of Llandaff (CB)]

My Lords, I am most grateful to everyone who has spoken tonight and who shared their personal experiences and the passion and, indeed, anger that my noble friend Lord Patel referred to. Really, we are at the point where enough is enough. I would love to address every point individually. I greatly appreciate the Minister’s commitment in giving me access to his Bill team and to officials previously and I will take up that invitation with zeal because I will come back to this on Report. I can say now that I will divide the House on Report because enough is enough. We cannot carry on with the lack of action and the continued jumble sales, cake sales and everything else.

The noble Baroness, Lady Masham, asked me about the support for children. As the noble Lord, Lord Patel, pointed out, the cost of putting this right, if you work it out, is less than £20 per person across the population. It is really low. Yes, of course, it involves children. I would like to finish with a tribute to a little boy called Stevie. Stevie told me that he was going to die when his goldfish died. His goldfish died. He then asked that we promise not to give him any more injections. We said: “Fine, we will not give you any more injections, Stevie, we will keep everything controlled.” His third point was for his parents to come in. He made them sit down and hold hands across the bed and promise to never argue again. He died shortly afterwards.

For all those children, all those adults—all those thousands of people—who are dying every minute, we must make sure that we meet their promises, that we give them good care and that they have good symptom control and good psychosocial support as they are dying and that their families do as well. Enough is enough. On that note, I beg leave to withdraw the amendment.

Amendment 47 withdrawn.

Ambulance Queues: Health Outcomes

Baroness Finlay of Llandaff Excerpts

Thursday 13th January 2022 Lords Chamber

[Lord Kamall (Con)]

As the noble Lord will be aware, when the charge was initially announced it was intended to help with social care, which has been neglected for a number of years under successive Governments. Given the pressures of the backlog, the NHS has decided to divert some of those resources to help tackle it. We have invested money in social care in the short-term winter plan, and in the longer term we have announced extra investment to ensure that social care is an attractive career and offers real prospects.

[Baroness Finlay of Llandaff (CB)]

My Lords, does the Minister recognise that his response, saying that this involves a small number of trusts, does not address the data from NHS England for the seven days to January 2, which showed that 23% of all arrivals by ambulance had delays of half an hour or more—that is over 19,000—and that some 10% of patients waited more than an hour to be handed over? This meant that those ambulances were also unable to deliver first aid and first implementation of treatment to people who were waiting. Therefore, when patients arrived at emergency departments, they were even sicker than necessary, and it may be that some lives were lost.

[Lord Kamall (Con)]

The noble Baroness makes an important point. In anticipation of the winter crisis, last year we published the Urgent and Emergency Care Recovery 10 Point Action Plan to look at the direct pressures on not only A&E but the call centres, and at some of the wider system issues. For example, when people cannot get access to their doctor, they tend to go to A&E. At other times, they cannot get the replacement medication they want and have to call an ambulance to go to A&E and get it. We are looking at some of the wider system problems to make sure we address the backlog.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 1 & Committee stage
Thursday 13th January 2022 Lords Chamber

[Lord Scriven (LD)]

My Lords, this is my first intervention on the Bill. I draw the Committee’s attention to my relevant interests in the register, namely as a vice-president of the Local Government Association and a non-executive director of Chesterfield Royal Hospital NHS Foundation Trust.

I support this suite of amendments—particularly Amendments 11, 14, 65, 94, 186 and 195—which explicitly puts the issue of health inequalities in the Bill and makes it central to the aims of the NHS. It also deals with reporting and holding people to account for helping to reduce health inequalities.

The reason for my support is simple. I speak as a former NHS manager who, as a rookie many years ago, in the very early 1980s, was on the general management trainee scheme. For the first three months, our aim was just to go around. I remember asking the very naive question: “Who’s responsible for quality?” I expected the person who was showing me around to say, “Everyone”, but he said, “Follow me.” We went in his car for five miles outside the hospital to the health authority. We then went into a lift, down into the basement and through lots of corridors, and finally came to a door at the end of the corridor. The door was opened and in a dimly lit room was a middle-aged woman, surrounded by piles of paper. I said, “Who’s this?” I was told, “This is Gladys. Gladys is responsible for quality.” It was seen as someone else’s job.

That is why I have cringed a little when the Minister has said, in previous debates and Answers on health inequalities, that the Office for Health Improvement and Disparities is being established. That is well and good, but that office is not responsible for reducing health inequalities; everyone in the healthcare system and its partners must work together to reduce health inequalities. That is why it is really important that this is explicit. It is not just about health issues; it is about people’s income, work, environment, green space and transport. It should be explicit in the Bill as part of the triple aims—which will become four aims—and become part of monitoring. This issue must become central because something that I have learned about the health service is that unless the centre asks for it, and asks for it to be monitored, it just does not get done because it is not seen as important. That is why monitoring this at both local and national level will hold people to account so it does not become Gladys’s responsibility.

The Bill gives us a once-in-a-lifetime opportunity not just to put health inequalities centrally in the Bill but to make them explicit in the way that the NHS and its partners work. With a little extra legal push to the mill, so to speak, as well as the monitoring, the data and holding people to account, I believe that we can finally start to deal with these issues in a systematic way that shows improvement and will allow the NHS and its partners to know where to push a bit harder to get this done. That is why I support the amendments.

[Baroness Finlay of Llandaff (CB)]

My Lords, this debate has shown clearly that attacking health inequalities must go beyond the bounds of the NHS as the impact of external factors is massive. I remind the Government that in 2015 poor housing alone was estimated to cost over £10 billion. That was in part because of the poor housing but it was compounded by inactivity and, as a result, obesity.

We should look at the antecedents of complex problems. Marie Curie’s report Dying in the Cold revealed failures in healthcare, bereavement and grief and the challenges of providing care for those with complex needs. Learning difficulties and autism, for which we often do not know the underlying causes, are disproportionately prevalent among people who are socially excluded and at high risk of homelessness, yet for them managing homelessness alone is particularly difficult because of their overall vulnerability. It has been estimated that autism alone has a twelvefold prevalence in those who are homeless compared to the general population.

The antecedents of many of the problems go back to childhood. They carry a life sentence of their trauma, which feeds into worsening health inequalities, aggravating factors such as alcohol and drugs consumption and other behaviours. Unless we strengthen the wording in the Bill to monitor and do something about the data that comes forward, the proposal of my noble friend Lord Kakkar—it is essential that we address this as a core problem to be tackled—will not be realised. I hope that when the Minister replies he will provide some assurance that the Government will consider strengthening the wording in the Bill in the light of this debate.

[Baroness McIntosh of Hudnall (Lab)]

My Lords, I wonder if I might be allowed to speak at this point for the simple reason that I am shortly due to take over from the noble Baroness, Lady Fookes, in the Chair and if I do not contribute now, I will not be able to at all. I have no special expertise to bring to the scrutiny of the Bill, therefore this is the first time I have spoken on it and it may be the last. I want to speak in support of the contribution of my noble friend Lord Howarth of Newport, right at the beginning of what has been a very long and extremely interesting debate but which, until recently, when my noble friend Lady Pitkeathley mentioned it, did not refer back to the points he raised.

In making my brief remarks, I draw attention to my own interests, which are mostly to do with the arts. I am thinking about what my noble friend Lord Howarth said about the arts sector and what it can contribute. I ask the Minister, when he comes to reply, if he would look to one side of his department—particularly towards the Department for Education and to the Department for Digital, Culture, Media and Sport—for further evidence, in addition to the very strong evidence my noble friend Lord Howarth put forward, of the impact of engagement with the arts, particularly on people suffering from often multiple disadvantages.

It is very clear that the data emerging in relation to education points to a strong impact on the health, particularly the mental health and well-being, of young people in education settings when they are able to engage creatively with the arts and arts practitioners. It would be very easy, in thinking about the huge diversity of issues that have been raised here which bear on health inequality, to see engagement with the arts as a “nice to have” extra—something that, if we get everything else right, we can perhaps add in. But it is more important than that, as the evidence is now strongly beginning to show. I therefore ask the Minister not to forget what my noble friend Lord Howarth said at the beginning of the debate in his reply, and to consider very seriously how health inequalities can be properly and creatively addressed by further engagement with the arts sector.

I will say one last thing, which perhaps seems not quite at the heart of it, but it is important. My noble friend Lord Howarth, in giving his examples, spoke about arts organisations, many of which are trying to contribute to this area. To be able to do that, they need people with skills who can deliver the work. Nearly all the people who can deliver the work and have those skills are freelancers. As we all know, they have suffered hugely in the last two years as a result of the crisis that we have all been through. Freelance workers in all sectors, but particularly the cultural sector, have had a very bad time and quite a lot of them have left. I add that as an additional thing to remember when we look at the expectations we can reasonably—and should—have of the arts sector. It needs to be able to properly support the people it has to engage to deliver the work that it can do.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 2 & Committee stage
Thursday 13th January 2022 Lords Chamber

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I am very keen to speak to these amendments. This is the first time I have been able to contribute to this Bill, and I apologise for not being here for Second Reading. I was actually talking to Members of the Scottish Parliament about NICE and SIGN guidelines on the day of Second Reading, so I am delighted to have an opportunity to contribute now. I will speak to Amendments 17, 205 and 301. I thank my noble friend Lady Morgan of Cotes for tabling them; I would have added my name to all three if I had got in quick enough.

We all appreciate that health and care are devolved matters. As my noble friend outlined, the Scottish Administration have taken a very different path on health and care over recent years, which perhaps could be characterised as worrying less about long-term funding and pursuing a more centralised approach. The Bill is therefore predominantly and rightly focused on matters relating to England, but a number of clauses addressed by these amendments relate to devolved areas. I note that the Scottish Government and the Cabinet Secretary for Health in Scotland have yet to grant the Bill legislative consent, believing that some clauses do not reflect the devolution agreement. I beg to put that these amendments are slightly different, in that they do not cover a specific area of delivery within devolved nations.

Amendment 17 simply covers how NHS England should consider the impact of any decisions it might make on patient outcomes in the devolved Administrations. Amendment 205 protects the right of access to treatment and services for all citizens throughout the UK. Amendment 301 seems to be simple common sense, in that it ensures the interoperability of data and collection of comparable healthcare statistics across the UK.

I support these amendments on a number of counts. First, the pandemic has highlighted the huge importance of good data, and close collaboration and working, throughout all health and care services in all parts of the UK—whether that is knowledge gathering, information sharing, vaccine development and rollout, or anything else. The pandemic has demonstrated yet again that we are “better together”. In the realm of healthcare, I support any measure that ensures that we do not work in silos and that barriers are not created in the provision of healthcare that prevent seamless co-operation throughout the UK. This will become ever more important as roles change, technology advances and services develop.

We particularly need to ensure a UK approach to data gathering and healthcare statistics, as set out in Amendment 305. The disparities do not just present a barrier to consumers of healthcare—the public: voters, indeed—and their understanding and ability to evaluate standards of care in their area, as my noble friend Lady Morgan just illustrated. The lack of interoperability of data has real and detrimental consequences for health research, patient care, and ensuring and promoting continuous improvement in healthcare. This is before we even consider inconvenience and inefficiency.

My eldest daughter stands in danger of being caught out by the current unsatisfactory situation. As a student at the University of St Andrews, she had her first two Covid vaccinations in Scotland, recorded on the NHS Scotland app under her CHI number, which is the number that NHS Scotland uses to identify patients. By the time it came to her booster and third injection, she was working as a graduate trainee in London. She duly went along in December and queued at a drop-in centre for her booster. However, the two systems do not match, so nowhere can she now show her proof of having three doses of the vaccine—which might lead to some problems if she wants to go to the rugby, a nightclub or somewhere else where she has to show it; or if she wants to travel. The same situation has arisen for many students or others who regularly cross the borders of the United Kingdom for work, study or family reasons. For these reasons, I commend the Minister to look at initiatives such as patient-held records. After all, we should always remember that, importantly, this is the patient’s own data.

Another challenge we faced at the beginning of the pandemic was when consultants across the four nations sought to identify who should be in the shielding categories. Ensuring that the right people with the right conditions were identified and then notified was made far more challenging by the disparity of health data for different populations. It is bad enough that primary care, secondary care and social care data do not speak to each other, but healthcare is far too important to be allowed to become a political football within the UK.

The Prime Minister has put ensuring the viability and security of the union as one of his top priorities. We have heard the excellent recommendations of my noble friend Lord Dunlop, and many times in this Chamber we have been assured that the recommendations will be enacted by Ministers across government departments, so that decisions taken in Westminster and England that affect the devolved nations will be considered proactively, positively and constructively, and we can build mutual respect. This Bill and this moment are an ideal opportunity to put some of these principles into practice. What could be more positive and constructive than legislating for NHS England to ensure that this body considers the impact of its decisions on patient care in Scotland, Wales and Northern Ireland?

Like Amendment 301, where better data will lead to greater transparency, the new clause proposed by Amendment 17, which aims to ensure that the Secretary of State publishes guidance on these matters, also goes some way to ensuring transparency, which is so important in the building of mutual respect. These amendments would ensure that those with different approaches and political views across the UK cannot simply manipulate the delivery of healthcare and sacrifice patient outcomes on the altar of division.

Turning to Amendment 205, at the moment, if a treatment is available to patients in one of our bigger teaching hospitals—say, in London, Glasgow or Edinburgh—should that treatment not be available to anyone in the UK? I refer to my interests in the register, particularly as the chief executive of Cerebral Palsy Scotland. I recall that, when the procedure for children with cerebral palsy, known as selective dorsal rhizotomy, was first performed in the UK, it was available at first only in Bristol. However, NHS boards in Scotland were able to refer suitable patients on an ad hoc basis, with funding following the patient. This saved families having to raise around £80,000 to travel to the United States for the procedure—but it did not just help the families. The practice was able to ensure that good practice and learning were shared. Now, the procedure, pioneered in Bristol, is available in a number of areas across the UK.

Specialist, life-saving cancer services are another example. I think of a recent case where a patient from Glasgow—a good friend of mine—was able to benefit from treatment in Liverpool, which was his only option for treatment in the UK. However, it is not just for rare procedures or difficult cases that this is applicable. I have often seen families of children with cerebral palsy from Belfast, Carlisle or Northumberland who wish to travel to Glasgow or Edinburgh for relatively routine but condition-specific input instead of having to travel to London. At the moment, as I said, these arrangements are made largely on an ad hoc basis rather than being broadly available. This is what Amendment 205 seeks to correct. The NHS is a great British institution. The clue is in the name: it is a national health service. Therefore, should access not apply right across the UK?

I urge the Government to accept these amendments. I cannot see why they would not, as they will not only ensure better co-ordinated healthcare throughout our United Kingdom; they will ensure that patient care for all our citizens, wherever they live, is given due consideration, and they will clearly illustrate the importance that the UK Government place on the well- being of people right across the UK. I look forward to the response from the Minister.

[Baroness Finlay of Llandaff (CB)]

I am most grateful to the noble Baroness, Lady Morgan, for tabling these amendments and starting this debate, because these three amendments are very different.

I welcome Amendment 17. Of course we should consider the devolved Administrations because of all the cross-border flows. As we have just heard, people move around the UK. We have a lot of patients from Wales—I should declare my interests; I will not list them all in Hansard, but I have various roles in Wales and have done various things with IT in Wales as well—who routinely go into England from across north Wales; and in south and mid-Wales, they go across to Hereford and Shropshire. So I say to the Government, please make sure that you do always consider the impact.

We need patient-based clinical information that flows between different systems in a timely manner. The noble Baroness, Lady Fraser of Craigmaddie, referred to patient-held records. I hate to disappoint, but we did a quite extensive research project on them and found that there were all kinds of problems with them, one of the main ones being that, when the patient turned up in ED, they inevitably did not have their record with them—or they did not want things written in it in case somebody else in the family saw them, and so on and so on.

--- Later in debate ---

[Baroness Pitkeathley (Lab)]

My Lords, like the noble Baronesses who have spoken before me, I recognise the difficulty of being too specific about board membership, but I think that paragraph (h) in Amendment 37 in the name of my noble friend, to which the noble Lord, Lord Patel, has added his name, is wide enough to enable patients and carers to be represented. Indeed, given the Government’s commitment to the voice of patients and carers, I find it difficult to understand how they could not accept such an amendment. I know the Minister is extremely committed to that patient and carer voice.

I want to extend that a bit to making sure that we do not forget the vital contribution that charities and community organisations make to health and social care services through their well-documented ability to be innovative and flexible. Your Lordships know that in the course of the pandemic, they immediately operated better delivery mechanisms than the statutory sector was able to because they were able to be flexible. One million volunteers were recruited, and many people had experiences similar to mine, with people saying that it was only through the services of voluntary organisations and charities that they had any kind of support at all, particularly during the first few weeks of the pandemic.

When the Public Services Committee of your Lordships’ House did its inquiry into how public services had reacted to the pandemic, time and again we received examples of where charities were ignored by public service providers. Even if they were consulted at a later stage in planning, it was not to take account of their experience and skills but to assume they would co-operate in whatever role was doled out to them. That is not the way to make the best use of the untold amount of good will, experience and skill that exists in charities, especially in the areas of health and social care. This is a waste of scarce resources and must be recognised in the new structures as they are set out. There are many examples of where these partnerships work well, recognising the different skills on offer, and of where charities are treated as partners, but they must be involved in planning at the earliest stages and be supported financially if appropriate. They will always give a good return on resources.

The other area where charities make a significant contribution is in representing the patient and carer voice. Voluntary sector organisations are often the services that have most contact, especially with vulnerable people. Your Lordships will have endless examples of that. Much is made of how important the voice of the user, patient and carer is when planning or delivering the services. Co-production, co-design and the other buzzwords we hear all the time absolutely depend on being in touch with users and patients. Almost inevitably, the easiest way to access users and patients is through local or national charities which make users their focus, both in the planning of services and the governance of the organisation.

Proper involvement of users, patients and carers often throws up surprises, even pleasant ones, about money. If you really take the views of users and patients, you will often find that what they want from health and social care services is not what is being provided. They will often ask for less provision than we expect, so long as it actually meets their needs, not the needs estimated by the providers. This is a valuable fact when resources are short. It is one more important reason to forge partnerships with the voluntary sector when the memberships of ICBs and ICSs are being set up. Organisations in their areas should be considered as partners which have a great deal to contribute and will do so willingly and productively.

[Baroness Finlay of Llandaff (CB)]

I have two amendments in this group, so I will try to address them very briefly because of time. I am most grateful to the noble Baroness, Lady Thornton, for the way that she introduced this and would like to return very briefly to the issue of public/private potential conflict when public money is being spent, because there is an issue of probity around that. Having shared corporate accountability for the delivery, functions and duties of the ICS could be in conflict with the legal duties of company directors, as has already been pointed out, and therefore creates problems.

I know that the Government recognised this in the other place, but their amendment seems to fall short in two respects. It leaves to the appointed chair of the board the decision on whether a person with interests in private healthcare is incorporated into an ICB. The difficulty is that it provides a condition that their interests in private healthcare could undermine the independence of the health service, but it is very unclear how that will actually be measured. I can see that it would be a fantastic area for legal argument that a precedent had been set in one area that was being worked against by the chair of another ICB. I think this needs to be clarified, because they will be dispensing public money and there are examples already where different decisions have been taken. I will not go into those now because of time.

I turn briefly to the reasons behind the amendments I have put down and declare that I am president of the Chartered Society of Physiotherapy. I am most grateful to the noble Lord, Lord Bradley, for co-signing my amendments. There is a role in recognising that the allied healthcare professionals are the third-largest part of the workforce—the workforce is not just doctors and nurses—and are critical to the long-term plan for the NHS. They work across the health and social care boundary and out into the community. They are integral—physiotherapists in particular—to primary care, and speech and language therapists are essential for children and young people, particularly those with communication difficulties, and that of course includes those with autism and learning difficulties.

I also recognise, though, the problem that you cannot have everybody listed on a board and everybody wants their own so-called representation on it. It will be important that the terms of reference and the metrics by which the function of the board is measured and compared are very clearly laid out, to make sure that there is appropriate consultation at all times with those who are on the receiving end of healthcare, and that people such as allied healthcare professionals are appropriately involved in decisions for the patient groups on which they can have a major impact. Quite often they have a much more major impact than medicine or nursing will do in terms of a patient’s long-term quality of life, and rehabilitation in particular.

So I hope that the Government have listened to this debate and in particular will heed the important warning from the noble Baroness, Lady Thornton, in opening this debate and in the content of the amendments that she has tabled.

[Lord Mawson (CB)]

My Lords, I spoke on Tuesday about the structure that my colleague Paul Brickell, a Labour councillor in Newham at the time, and I, wrote for the then Government Minister Hazel Blears for the new company that would deliver the Olympic legacy in east London. I also described some of the key people who were invited to be directors of this company, with a clear vision and narrative, focused on delivery.

In east London live people from every nation on earth. Indeed, we did some research and we thought Greenland was not represented—but then we found a family in Newham that was from Greenland. Clearly, we could not have a representative from every nation on the Olympic Park Legacy Company, the OPLC—it was not possible.

At that time the noble Baroness, Lady Ford, was chosen as a Labour Peer by a Labour Prime Minister to be the chairman of the board. She was a very experienced player in the regeneration world from Scotland, not east London. I think that at the time she was a little embarrassed that I, an east Londoner, was not chairing it, given all the early work we had done on helping the east London Olympics happen. But I was not a Labour Party member and therefore could not carry the then Government with me, while she could. I was not concerned about this. My colleagues and I in east London were concerned about whether she had the knowledge and skill that could add real value to this important project and the public sector organisation that had been created. She was excellent and had an objectivity I could not possibly have.

We needed both things on the board: deep, local, practical experience and objectivity. I was asked to chair the Regeneration and Community Partnerships Committee, I think because she thought I knew quite a lot about these local issues and delivery, was trusted by local people and had a track record of delivering in place and in local neighbourhoods. Because my colleagues and I had delivered real projects with the local population, we did not know one thing about the place and neighbourhood: we knew, in depth, many things. It was all about finding the right experienced people, not those who said they represented something or somebody. The mayors of Newham and Hackney were there because they were impressive Labour leaders in east London who were turning around troubled local authorities.

I was asked to join the OPLC board as a person with deep, long-term roots in both a place—east London—and a neighbourhood, Bromley-by-Bow. I could speak and reflect back to the board not one thing—say, the environment—but also health: we were responsible for 43,000 patients. I had also been a Mental Health Act manager for quite some years locally. I think the noble Baroness chose me because I had deep and wide experience of the people, place and local neighbourhoods, and because of the practical work we had done in east London over quite some time—three decades, actually. It was about practical experience of place and neighbourhood and delivery. It was not about a person who thought he or she was representing one group or another, or a particular topic.

Experienced people bring many things to the board with them. I worry about the disabled person on a board who thinks they can talk only about disability issues—this is very condescending—or the young person who can talk only about young people’s issues. They can talk and have views on everything; it is about finding the right-quality person. However, they must have in-depth knowledge of what is actually going on locally and a deep understanding of the practical issues surrounding delivery. This is absolutely crucial.

There is a wider problem with some representatives on committees and structures, because they represent other agendas and they have mixed loyalties. They cannot focus on the task of the board because they have mixed loyalties elsewhere. They do not therefore prioritise the needs of the organisation they are sitting on. There is a lack of clarity about this, and I suspect we will all have experienced this on boards we have sat on. We need to get very clear about these democracy and delivery issues—what I call “the two Ds”. I have listened to a lack of clarity around these issues from successive Governments in recent years. We must get this clear if the new NHS structure is to really deliver the transformation we all now want to see and to deal with the health inequalities we rightly all discussed this morning.

Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Committee stage & Lords Hansard - Part 1
Tuesday 11th January 2022 Lords Chamber

[Lord Patel (CB)]

My Lords, my knee-jerk reaction was going to be, “I don’t agree with what Lord Lansley says”. However, I have put my knee hammer back in my pocket, because I do agree with him about the importance of using outcomes indicators as a measure of the performance of health in patients. In that respect the outcomes framework has always been a good development. Although Clause 4 focuses on cancer—and I hope we do not change that—it is an example of how it can be used for other conditions to improve healthcare.

The noble Lord has also identified one key omission in this Bill, which I hope we can find a way to fill: who will be responsible for making sure that there is continuous improvement and development in healthcare that measures the outcomes? That is not in the Bill. I hope we might find a way to do that, whether through the mandate or other ways. That is all I have to say.

[Baroness Finlay of Llandaff (CB)]

My Lords, I must declare an interest, because a lot of the outcome measures that are now used are in place at Cardiff University. I will expand a little on and support what my noble friend Lord Patel said about outcome measures, particularly for something such as cancer. That is in part because the disease process itself is marching on all the time. It is different from many other diseases, where there might be a chronic condition and other things happen as a result of it. If you do not intervene rapidly with some cancers, you miss the boat and go from being able to cure it to a situation where you certainly will not be able to.

The other group of outcome measures that I do not think we should forget has just now been developed: family-reported outcome measures. That is the impact on the family. We know about the number of carers that there are. There are child carers and many unpaid carers. Having somebody in the family with a disease process, waiting for something to happen and seeing that disease process getting worse and worse in front of their eyes, has a major impact on the health of others and stacks up problems for the future in the health service.

That is why, when I was on the All-Party Parliamentary Group on Cancer, I strongly supported John Baron in all his efforts to look at the one-year survival times in cancer. Looking at outcomes can be far more informative than looking simply at process targets, which is what we have been looking at too much to date rather than looking at the overall impact of disease.

[Baroness Thornton (Lab)]

My Lords, I will speak to Amendments 7 and 9 in my name. I thank the noble Lord, Lord Lansley, for introducing this debate and I look forward to supporting the noble Baroness, Lady Walmsley. I think we are about to see harmony breaking out between the four walls of the Chamber. The noble Lord, Lord Lansley, and I are I think in accord over these amendments.

Historically, the mandate is part of the attempted change—I think that is probably the right way to put it—to distance the role of government and Ministers from the sound of bedpans dropping, if I might put it like that. Unfortunately, as the noble Lord, Lord Lansley, said, despite the mandate’s intentions, recent Ministers have still tried to micromanage and otherwise interfere with NHS managers. During the passage of the 2012 Bill, the Government had to concede that the Secretary of State remained politically responsible to Parliament for the NHS.

I think it would be fair to say that laying the mandate before Parliament in each year, as was intended, has not brought about energetic debates and wise reflections in either House of Parliament. But the mandate is not without merit. It is good that the NHS knows what is expected of it and should be free from sudden announcements and other surprises. Without something of this nature, it is wholly unclear how accountability works. So we accept that, at least until the next reorganisation happens, there has to be a mandate, and the important thing is to get this right.

For that reason, we support the two amendments from the noble Lord, Lord Lansley. If anybody knows how the mandate ought to be used, it is definitely him. Trying to have clearly stated objectives in the outcomes framework, or some equivalent, and ensuring that the mandate is objective, evidence-based and publicly accountable must be correct.

--- Later in debate ---

[Lord Kakkar (CB)]

My Lords, I support the objectives of this group of very important amendments. In so doing, I remind noble Lords of my interests as chairman of the King’s Fund and of King’s Health Partners. I have seen this work directly in King’s Health Partners through a programme defined as Mind & Body, which proposes to promote pathways of care across the entirety of our health economy that look in equal measure at physical and mental health for all patients, irrespective of their principal clinical presentation. Initiatives such as that important programme could be brought to fruition only because of the emphasis in the 2012 Act regarding parity for physical and mental health. It demonstrates very clearly that legislative intervention can have a profound impact. I very much join in congratulating my noble friend Lady Hollins on her relentless commitment to these issues in your Lordships’ House over the past 10 years, which have had and will continue to have a profound impact.

It therefore seems counterintuitive for Her Majesty’s Government, in bringing forward this important legislation, to move away from the opportunity to emphasise the importance of this parity. Is it sensible to move away from this position? Why not use the opportunity afforded by this important legislation to emphasise once again the importance of parity between mental and physical health in every respect—not only funding but the organisation and supervision of services and the construction of organisations within the NHS—so that, step by step, we can achieve what every Member of your Lordships’ Committee who has spoken in this debate has emphasised?

Will the Minister, in replying to the debate, reassure your Lordships that not proceeding with these amendments does not undermine what has been achieved so far and that what is proposed in the Bill can without the amendments achieve the continued momentum and concentration of focus on this vital issue, to ensure that we continue not only to develop mental health services but to ensure that they can be integrated more broadly into physical health, and that physical health services can be developed to ensure that the mental health consequences of physical conditions can also be appropriately addressed? In taking this holistic approach, we will achieve the objectives of better well-being and health for all our fellow citizens—one of the most important aspects of the triple aim.

[Baroness Finlay of Llandaff (CB)]

My Lords, I should declare my interests as having worked with liaison psychiatry extensively in the cancer centre in Cardiff, and as chair of the National Mental Capacity Forum for England and Wales.

One group that has not been mentioned yet—I appreciate the noble Lord, Lord Warner, mentioning some—is those with impaired capacity and learning difficulties. We should not underestimate the importance of access to psychiatry for those people who develop mental health problems as a result of their physical health problems. To view the two as separate is a fallacy because they are completely integrated in many people. Many people present initially with a physical illness but develop mental health problems which, if ignored, become really major. The opposite also occurs, of course. Those people with learning difficulties and impaired capacity at different levels often have a raft of quite serious physical medical conditions that might be particularly difficult to diagnose because their mental health problems get in the way of their ability to express themselves.

If we are really to drive up the health of the nation at all, we would be completely misguided to ignore the importance of this group of amendments. Like others, I urge the Government to grasp this nettle, put this in the Bill and make sure we finally address this severe imbalance, which has left so many people never accessing the care they need. That applies both to mental health care and to those with mental health difficulties who then fail to access the physical healthcare support they need because they just cannot express their needs properly.