(2 years, 1 month ago)
Lords ChamberTo ask Her Majesty’s Government what plans they have to amend the Misuse of Drugs (Amendments) (Cannabis and Licence Fees) (England, Wales and Scotland) Regulations 2018 to enable general practitioners to prescribe cannabis medicines to patients whose symptoms are being substantially alleviated by such medicines currently purchased privately.
The Government share the aim of NHS funding for licensed medicines that have proved safe and effective, rather than patients paying private subscriptions for unlicensed products that are not assured by our medicines regulator. Broadening who can prescribe these products will not achieve this. For this to happen, we need the cannabis industry to invest in clinical trials. Our medicines regulator—and the National Institute for Health and Care Research—has asked it to do so and is ready to support it when it does.
My Lords, the Minister will be aware of Bailey Williams, aged 20, who has very severe epilepsy and was hospitalised every week throughout his childhood, until the last four years, when he has been on medical cannabis—these have been his best years. His parents are struggling financially and asked Bailey’s consultant to prescribe medical cannabis under the NHS; after all, NICE has approved this in its guidance. The answer was no, but palliative care was an option—palliative care but not a proven medicine that has done so well for this child for four years. The Minister cannot accept that situation. Will he meet MHRA, with me, to discuss the way forward? There has to be a way forward.
First, I thank the noble Baroness for meeting with my colleague, my noble friend Lady Penn, yesterday. When I became a Minister, the Permanent Sec recognised a potential conflict of interest, which I have been told means that I cannot meet with people about this particular issue, but I can answer this Question if I declare my interest. So I better quickly declare it: I used to work for a think tank that received some funding from the medicinal cannabis industry, and I shared a round table. That immediately ruled me out as having a conflict of interest. None the less, I am very happy to facilitate meetings with my ministerial colleagues. As the noble Baroness will be aware, there is a new ministerial colleague in place at the moment. The point remains that we have asked the industry, which makes lots of money in this area, to come forward and fund trials, but it has preferred not to do so.
(2 years, 2 months ago)
Lords ChamberWe have to go back and remind ourselves of the situation in 2019 and 2020. We have to remember that, at the time, there was no vaccine and the whole market suddenly panicked—people were competing with each other to buy equipment. We heard stories of government officials sitting in factories with suitcases of cash, trying to make sure that they could buy material at the best possible prices, and at the same time we saw containers being redirected at sea and people being gazumped. We therefore made the decision at the time, without being accurately able to predict how much PPE equipment we needed—no one could have done so—to procure as much as possible.
My Lords, I appreciate the very real time pressure at the beginning of the pandemic. However, a few days spent to ensure high-quality PPE through some form of competition would have saved lives. Will the Minister tell the House how many contracts were agreed through a personal contact, without any form of competition at all, in that first year?
The noble Baroness will recognise that I was not in post at the time, but I have been advised by officials in the department that they put feelers out to as many people as possible. Government officials, Members of the House of Lords and politicians from all parties were suggesting companies, and that was put through a process whereby the department made an assessment of whether it was able to award contracts.
(2 years, 5 months ago)
Lords ChamberMy Lords, I declare my interest as a vice-president of the Local Government Association. I will speak very briefly from the Liberal Democrat Benches to offer our support for both the amendments in this group.
The amendment tabled by the noble Baroness, Lady Pitkeathley, Amendment 113, says that unpaid carers, including those under 18, must be properly consulted by the NHS to ensure that they are able to provide the care needed to keep patients safe. In Committee—and, more recently, at the excellent and moving round table with family carers organised by Carers UK, about which the noble Baroness, Lady Pitkeathley, just spoke—we heard evidence of hospitals discharging patients before assessments had been completed and before carers had even been told. The burden that this places on carers is totally unacceptable and unsafe. Worse still—and unsurprisingly—the home arrangements too often break down when family and unpaid carers are not a full part of the consultation process. We support the noble Baroness, Lady Pitkeathley, in this vital amendment.
The second amendment, Amendment 144, to which I have added my name, was tabled by the noble Baroness, Lady Wheeler. The amendment ensures that there are always proper social care needs assessments to ensure that both the family and unpaid carers are consulted, along with the relevant local authority; and that ICBs must have an agreement in place with the relevant parties to ensure that vulnerable people are not discharged without the right support. Some carers are themselves vulnerable people, and we need to make sure that all protections are in place for them too.
Equally importantly, it ensures reporting by the relevant authorities back to the ICB so that it can monitor discharge effectiveness. It says—as a bit of stick to go with the other carrot parts—that the ICB must pay for any
“additional costs borne by a local authority in caring for a patient whilst carrying out social care needs assessments”,
in the event that the patient has been discharged before this was completed.
There are 1.4 million unpaid carers who save the state just under £3 billion a year—and they need more than guidance. Both of these amendments will ensure that the patient and their unpaid carer are assessed and supported properly, and that the key stakeholders—the NHS, the relevant local authority and the ICB—must work together to make this happen.
My Lords, I rise to support Amendment 113. I applaud the noble Baroness, Lady Pitkeathley, both on this amendment and on the years and years of commitment she has given to the support of carers.
It is extraordinary what this Government are prepared to do in this Bill. In revoking the Community Care (Delayed Discharges etc.) Act 2003, they are abolishing the “safe to discharge” test, which requires processes to have been followed to ensure that appropriate and adequate care is, or will be, in place for a patient’s discharge from hospital. The Government are proposing that carers’ rights in primary legislation should be put in statutory guidance instead.
As a member of the Delegated Powers and Regulatory Reform Committee, I am very conscious that, under this Government, secondary or delegated legislation is used more and more to concentrate power in the hands of Ministers rather than in Parliament. The only possible reason for the Government to remove carers’ rights from the Bill, and to put them into secondary legislation, is to weaken those rights. Can the Minister give any reassurance on that point? It is a very important question.
A number of us recently met with a group of so-called adult carers—teenagers and adults—and also with a group of young carers. Both of those experiences were humbling from my point of view. I will mention a couple of points that came up. One teenager rather casually mentioned that she had begun being a carer at the age of three. This is unbelievable, is it not? I forgot to ask her what she actually had to do at the age of three; it is difficult to imagine. But, whatever she had to do, the idea that she somehow had a sense of responsibility at that age is truly alarming.
The other memorable moment was when a teenager was asked, “What is the most difficult thing for you, or the biggest problem that you have as a carer?” I thought she would say that she did not have any time to play with her friends or that she had to do all sorts of boring and horrible jobs that her friends do not. But no, she did not say any of that; what she actually said was, “The biggest problem I have is that the hospital staff won’t tell me how much medication my mum needs. They say they’ve got to talk to my mum, but that’s impossible.” The selflessness implied in that is just completely extraordinary—and of course there were lots of other incredible points.
If these young carers are not consulted before their dependent relative is discharged from hospital, they may be at school or in the middle of a hockey match—it is just unimaginable that this requirement should be in any way weakened. I ask the Minister to take extreme care on this issue when going back and considering the Bill; only then can we be sure that patients are not just medically fit to be discharged from hospital, as the noble Baroness, Lady Pitkeathley, said, but are safe to be discharged—that is, carers or others are there to look after them.
BASW rightly points out that revoking a local authority’s Care Act duty to integrate care and support provision with health provision at the time of the key decision about where a person should be discharged to from hospital undermines the model of integration between social and health care staff—surely the absolute opposite of the whole objective of the Bill. I understand that discharge to assess is probably reasonable for medium and long-term care planning. However, an assess to discharge approach is even more important and should be done in hospital, from the date of admission to hospital. Where is that commitment in the Bill? I look forward to the Minister’s response.
My Lords, I am very pleased to support the noble Baroness’s amendment, and my thanks go to Carers UK for its briefing. I declare an interest as a family parent carer of an adult disabled man.
Earlier in Report, community rehabilitation was debated, and Amendment 113 complements this by acknowledging the vital role that carers play in supporting people’s discharge from hospital and promoting a community-based model of care. In Committee, I promoted an amendment that sought to define carers within the Bill, as they are mentioned in three clauses. This amendment incorporates that approach, to ensure that parent and young carers are not overlooked. I cannot stress sufficiently strongly how important rights in primary legislation are for carers, who often have all the responsibility for caring but very few of the rights. They are often experts in how people like to be treated, and they can be experts in a condition that professionals may have little detailed knowledge of.
Carers UK heard from carers directly about their experiences of being shut out of the system as part of the discharge to assess process. For new carers, it was often described as bewildering; promises to contact them just did not materialise. Carers UK research found that carers were not consulted and were not given information and advice or the support that they needed to care safely and well for the person who had been discharged. For several of these people, this involved admission to longer-term intensive support or, sadly, readmission back into hospital again. The amendment would have provided the checks and balances needed to ensure that this did not happen.
Carer experience surveys are also important, and they found that carers’ experiences of accessing health and care services for themselves have either plateaued or deteriorated in the recent past. Carers are twice as likely to have ill health as a result of caring; too often, they are overlooked in policy and practice in relation to health services. This is particularly true for parents of disabled children and for young carers. The work that they do has invaluable medical and economic benefit, often at the expense of their own well-being. I therefore urge the Minister to accept the amendment.
(2 years, 5 months ago)
Lords ChamberMy Lords, I too congratulate the Minister and his officials on listening to the House and the strong representations he received in Committee on this issue.
I welcome the Government’s amendment. I add my tribute to the work of the noble Baroness, Lady Finlay, as well as the many Members of this House and the campaigns of organisations such as Marie Curie in getting us to this point. It is wonderful that the symbol of Marie Curie is a daffodil, and we are here today on St David’s Day being led by the noble Baroness, Lady Finlay of Llandaff. That is very appropriate.
I disagree with the noble Lord, Lord Howarth of Newport—this is an historic moment and a huge step forward. It is the first time in the history of the NHS that there will be an explicit requirement to commission palliative care. I declare my interests as chair of the Scottish Government’s National Advisory Committee for Neurological Conditions and a trustee of the Neurological Alliance of Scotland. Many people with long-term, progressive conditions have not been able to access palliative care at an early enough point. Not only would this ensure better outcomes for patients, but it would also be a better use of NHS resources. I hope that the result of the Government’s amendment will ensure that these people get better care, including the palliative care they need. I also hope that ICBs will recognise the difference that they could make.
I welcome the opening remarks of my noble friend Lord Howe about taking the criteria set out in Amendment 17 in the name of the noble Baroness, Lady Finlay, and to which I was happy to add my name. It provides a helpful set of guidance for ICBs to follow, based on standards. I echo the question of the noble Lord, Lord Howarth, on ensuring that we have the right reporting requirements. I am grateful to hear that the Government will be developing statutory guidance to ensure that we put the necessary tools in place. However, I have been concerned to learn, in my meetings with NHS England, how—as far as I have been able to ascertain—it reports on services, rather than medicines or specific procedures. When reporting on NICE guidelines for services, NHS England seems to rely on “noise in the system” to ensure whether they know that something is happening or not. I share some noble Lords’ worry about the word “appropriate”. If we develop statutory guidance based on the criteria set out in Amendment 17, I hope that the risks that the word “appropriate” might continue to see a postcode lottery will somehow be allayed.
Finally, given that ICBs are at different stages of their development, can the Minister and the department give careful consideration to the ongoing and direct communication to ICBs regarding this duty? Will they consider writing to all ICB chairs to ensure that they are fully aware of the duty and their responsibilities?
The Government have made a very important step forward today in giving people who are facing the end of their life the reassurance they and their families need. The focus now must be on ensuring that this amendment is used to its fullest by the ICBs, so that everyone who needs palliative care will benefit.
My Lords, I shall speak briefly to add my very strong support for Amendment 17, promoting the provision of specialist multiprofessional palliative care services. I also welcome, and will comment on, the Government’s Amendment 16 on the same topic. Alongside all other noble Lords, I pay tribute to my noble friend Lady Finlay for her tireless work to improve palliative care services.
It is of course most welcome that the Government have tabled an amendment in this field, but their amendment leaves it to the ICB to decide what standard and extent of palliative care services are “appropriate” to meet what they deem to be the “reasonable” requirements of their populations—the Government’s words. What do these terms mean? Does the Minister accept that the amendment does not ensure that adequate specialist palliative care services will be available across the country? That is what we all desperately want to see. I hope that, in his response, the Minister can define these terms. What do the Government mean by “appropriate” palliative care services and a “reasonable” level of such services?
As I said in Committee, it is unbelievable that the NHS provides services according to need throughout our lives, until we are dying, when of course our health needs are at their greatest. At that stage, precious hospices have to raise their own money, as others have said in the past, to finance their doctors and nurses to care for the dying. Inevitably, hospital beds lie empty. Some 50% of beds in a hospice I visited recently were empty, because it simply did not have the staff to deal with patients in those beds. Can the Minister confirm that the Government will provide statutory guidance to supplement Amendment 16 and clarify what they mean by the terms “appropriate” and “reasonable”?
As things stand, I strongly support the amendment tabled by my noble friend Lady Finlay. As we die, we should all have high-quality palliative care services. We can then expect that, when assisted dying is legalised, a reasonably small percentage of dying people will suffer unbearably, despite benefiting from top-quality services, because of course there are situations when the best possible palliative care services have done everything they possibly can and yet certain patients suffer unbearably. We need a change in the law to ensure that those patients have control over the suffering that they can reasonably tolerate.
I look forward to the Minister’s response and, as I say, hope that he will clarify the definitions of the terms used in the amendment.
My Lords, this amendment adds a new paragraph to the new Section 3(1) set out in Clause 16 and it seems clear that what Section 3(1) says refers to all that follows it:
“An integrated care board must arrange for the provision of the following to such extent as it considers necessary to meet the reasonable requirements of the people for whom it has responsibility”.
One has to look at reasonable requirements in relation to everything in that list, with the first being “hospital accommodation”. The idea that there might be some areas with no hospital access at all is absolutely ridiculous. So this is a qualification, to be fitted in as paragraph (ga).
Immediately before it is another provision, which refers to services considered
“appropriate as part of the health service”.
That seems to suggest that it is absolutely essential that the needs and reasonable requirements of people who need palliative care are met. ICBs do not need to provide palliative care for the whole community, but are required to provide it for the proportion of people expected to require it, namely those getting near the gates of death. That is a reasonable interpretation of this clause.
I believe it goes quite a long distance in the way that the noble Baroness, Lady Finlay, and others for some years have asked for. I do not think it feasible to say that nobody in an area will require palliative care—unless its inhabitants are people who live for ever, of which there are only very few. It looks to me as though this is well constructed to ensure that palliative care must be provided where people die, in the area of the integrated care board.
I entirely welcome Amendment 17 from the noble Baroness, Lady Finlay, but the crucial amendment is provided by the Government and is written in a way that will be very difficult for any care board to try to escape, because it is very clear.
(2 years, 5 months ago)
Lords ChamberMy Lords, I support Amendments 9, 10, 14 and 32 and will speak to my Amendment 11, which follows on quite nicely from the contribution of the noble Lord, Lord Bradley. It refers to mental health, public health and secondary care services as vital to be represented on ICBs.
As drafted, the Bill leaves the membership of ICBs very much up to local decision-making. The Minister’s Amendment 31 does not change that; it leaves it up to the ICB to decide what it should look like. My concern is that ICBs may be dominated by managers from a range of organisations, perhaps including private sector health bodies. If such ICBs are established—they are being created as we speak—the Minister’s amendment simply enables them to reproduce themselves over time. There will be a degree of transparency over time, but the amendment ignores key sectors and the need for significant clinical inputs to these boards.
Amendment 31 usefully provides an opportunity for statutory guidance to achieve important objectives. In his letter, the Minister made it clear that statutory guidance will clarify that the ICB’s annual report will cover ICB duties in relation to child safeguarding. I very strongly welcome that. Can he include mental health and public health alongside child safeguarding as very particular services that are too often neglected and really need to be represented on ICBs? If he can agree to include those key services in the statutory guidance, as he has included child safeguarding, I would be very content.
Why are these services so important? As I said in Committee, having chaired a mental health trust for nine years, I am acutely conscious of the importance of high-quality and available child mental health services in particular. Across the country at present, the scarcity of such services means that vast numbers of children with quite severe mental health problems simply never get a psychiatric service at all while they are children. These untreated children will have severe problems for the rest of their lives because of that lack of treatment. It is therefore crucial to have a psychiatrist, who will be very conscious of this, on these ICBs—any psychiatrist will be aware that you have to intervene early if children display mental health problems. That is why I feel so strongly about that; I have watched it happen over years.
Another highly significant field being neglected as ICBs are being formed is public health. As many noble Lords know, I am conscious of the huge impact that effective public health responses could have on drug addiction. Police services are increasingly aware of this and are diverting addicted young people to treatment and away from the criminal justice system. However, this approach assumes that treatment services are available in every urban area, but they are not—they have been dropped or cut. Having a public health consultant on every ICB is crucial if these difficult matters are to be properly dealt with and treatment centres are not just closed because they are inconvenient, or whatever the case may be.
The Government hope to control the growth in knife crime through punitive, serious violence reduction orders. We know from all the research in the field that they simply will not work. The Durham, West Midlands and other police services are way ahead of the game, and more and more police services are following them in showing how best to ensure that violent young people caught up in county lines gangs can be diverted into education and work and away from the criminal justice system. However, that assumes that there are treatment facilities available; otherwise it simply cannot happen. Again, please can the Minister include a public health professional consultant on the ICBs as a recommendation in the statutory guidance, as he has done for child safeguarding. I beg to move.
My Lords, I will speak to Amendments 14 and 32 in my name and that of my noble friend Lady Watkins. I want to give an example from my experience; I declare an interest here as independent chair of an oversight panel, reviewing for the Department of Health and Social Care the use of long-term segregation for children and adults with learning disability and/or autism detained under the Mental Health Act. I have seen the impact of very poor and unaccountable commissioning for this group, with very costly mistakes—costly in money and in terms of lives lost and lives destroyed—because of a failure of commissioning appropriate health and social care in the community.
Some commissioners, frankly, do not have the competencies to do their commissioning job safely. I make this point because—while I appreciate the value of Amendment 31 and its requirement that ICBs would have skills, knowledge and experience, keep them under review and take action if they consider that members are failing in some way—as the noble Lord, Lord Bradley, put it, it is rather looking backwards, or marking their own homework, as I might put it, when they do not know what they do not know. This is the problem and why these amendments propose going a little further.
I welcome the Minister’s statement that ICBs will be required or expected to have the appropriate skill mix and experience necessary to deliver all their functions. I understand that the Government will issue regulations regarding fit and proper person tests, which will apply to ICBs when established, including adherence to the Nolan principles, Without the inclusion of the specific skills and expertise required, however, there will be little oversight or accountability of commissioning competence.
I would like the Minister to think again, and to commit to regulations and guidance that set out the criteria and standards that members of ICBs must possess, recognising the responsibilities that they will have and the impact of their decisions on the health and well-being of some of the most vulnerable people in our society. Commissioners take decisions of extraordinary influence; they spend large sums of public money. Civil service appointments are made in accordance with a competency framework. There is no reason why commissioners should be exempt from meeting specific eligibility criteria—and not just in the clinical sphere but in the commissioning sphere, for which there is currently no professional competency laid out.
To give another example, later this month I will be sponsoring the Second Reading of the Down Syndrome Bill, the Private Member’s Bill from the other place that will require relevant authorities, including the NHS, to take account of the specific needs of people with Down syndrome. During the Committee stage of the Down Syndrome Bill, the Minister committed to
“having a named lead on integrated care boards who will be responsible for the implementation of the guidance in practice.”—[Official Report, Commons, 2/2/22; col. 642.]
Thus, representation of learning disabilities and autism interests on ICBs would be within the context of the duty of ICBs to ensure that they have the necessary skills, knowledge and experience. Much will depend on the guidance issued by the Secretary of State under that Bill, which would fulfil similar obligations, I hope, to those of the autism strategy and the Autism Act 2009.
I reassure the Minister that I and other noble Lords recognise the challenge that the Government have in seeking to ensure that the new ICBs comprise people with the correct skills to enable the board to carry out its functions, but these amendments ask for a slightly stronger approach. I ask the Minister to assure the Chamber that guidance and regulations will address the requirement for criteria to be specified.
(2 years, 6 months ago)
Lords ChamberMy Lords, I added my name to Amendment 219, and I support all the amendment in this group. In view of the number of excellent speeches that have been made, I have given up on my speech and just want to ask the Minister a question. I am sure he finds it completely unacceptable that half of carers who provide significant care for a loved one say they have not even been consulted about a discharge from hospital and two-thirds of them say that they have not been listened to about whether they are able to care for their loved one when that person might be coming out of hospital. I ask the Minister to assure the Committee that he will be able to bring back an amendment on Report on this critical issue.
I support in particular Amendment 217. In so doing, I draw the attention of the Committee to my interests as set out in the register, particularly as a vice-president of the Local Government Association.
I want to make three very clear points about this. First, this amendment refers to assessment; it does not refer to the package of care. The assessment is the first stage, before the social workers and before adaptation or anything else can happen, so the person leaving hospital gets a sense of independence and support to lead as independent a life as possible and to help them in their recovery. Evidence shows that the best way to start the assessment is on the day that the person is admitted. It is not about waiting for an optimal time. The assessment may change as the person progresses, but all the evidence shows that assessment should start on admission. The concept that there is an optimum point does not stand up to the evidence.
Secondly, having this framework within the Bill, with timescales and so on, does not stop local innovation, it just gives a framework for local innovation and integration to take place.
My third point is a question. I know of no condition—unless the Minister can inform the Committee of one—where starting the assessment two weeks after a person leaves hospital is in the best interests of that person; they may have to wait six, seven or eight weeks for the package of care to be put in place. Can the Minister tell us for which conditions the suitable and optimum point at which to start the assessment is after a person has left hospital?
(2 years, 6 months ago)
Lords ChamberI thank the noble Lord for making me aware of this. I was not aware of this. I was told test kits were available to anyone who was considered immunosuppressed or vulnerable in advance. Given what the noble Lord has said, it is important that I investigate and write to him.
My Lords, I am not aware of any medication at all for the treatment of chronic fatigue as a result of Covid. What is the relevance of the recent research into the microscopic damage to the lungs caused by Covid? Are the Government funding any research into finding medications that could cure chronic fatigue?
One of the interesting things about having this role is the number of different stakeholders I speak to and all the wonderful research into vaccines and antivirals for different conditions. I am not aware of any current research into the condition that the noble Baroness refers to. However, just because I am not aware, does not mean it is not happening. I will find out and write to the noble Baroness.
(2 years, 7 months ago)
Lords ChamberMy Lords, in moving Amendment 203, I declare my interest as chair of Dignity in Dying, the sister organisation of Compassion in Dying. This amendment is supported by Marie Curie, Together for Short Lives, Hospice UK, Sue Ryder and the Alzheimer’s Society, as well as Compassion in Dying, a national charity which enables people to prepare for the end of life. I thank them all for their support and their briefing. I apologise—I have cut my speech to the bone in light of the late hour.
It might help the Committee if I make clear that, as I understand it, all our Fridays are taken up, because people are talking so long on all these Bills that we are having to use Fridays for government business, and also there are lots of Private Members’ Bills with Second Readings to come. So my understanding is that we have done what we can do with my Bill.
My Lords, perhaps the Minister, in replying, can tell the Committee whether he will talk to the usual channels, especially since I note that the Chief Whip and the Deputy Leader are both in their places, about whether time could be made available for further discussion of the Bill that is extant. Because whatever the merits or demerits of assisted dying, this is not the Bill for such an amendment.
I was not expecting that reaction.
On Amendment 297, it would not be appropriate to include a commitment to bring forward new primary legislation in the Bill. Future Bills and the use of parliamentary time are decisions that are rightly made via other avenues. As I said, I will commit to speak to the Chief Whip—he is not very far from me at the moment.
A number of noble Lords spoke about definitions. It seems that tonight we have challenged the definition of “neutral”. I was told that if I did not support this amendment, it would not be a neutral position. Given that those who spoke in favour of the amendment tend on the whole to be in favour of assisted dying, would it be a neutral position if I supported it? Therefore, have we now got a subjective understanding of neutrality or, as I said in my PhD viva, a subjective view of objectivity?
For all these reasons, I ask the noble Lord to consider not moving his amendment, but I fully expect him to come back to it in future.
My Lords, I thank the noble Lord, Lord Forsyth, for tabling his amendment. I was asked by other noble Lords to make it absolutely clear, and I have no problem with this, that I fully and strongly support his amendment. I did not speak to it because of time.
I thank a lot of noble Lords for being very good this evening about not addressing the great issue of assisted dying, because that would have been entirely inappropriate. Many noble Lords have been careful not to do that, so I am grateful to them. I am also grateful to the many noble Lords who have made clear their support in particular for Amendment 297. I was very clear about my own amendment; it is a probing amendment. I thank the Minister for his response and the Chief Whip for placing this at the very end of the day so that we did not spend 12 hours on it—I think we can all be grateful for that. I thank all noble Lords here tonight. I beg leave to withdraw the amendment.
My Lords, it is late. Tempted as I am to respond to all the arguments that have been put—I have some extensive notes here—I want to make just two points.
First, on the procedural arguments that have been put, if the amendment was not in order, it would not have been allowed to be put on the Marshalled List. Had the clerks advised me that there was any constitutional or procedural problem with the amendment, of course I would not have tabled it—a tradition which I hope will be maintained in this House. All these arguments about procedure—people can think it is not the right thing to do, but ultimately it is for the House to decide. I am most grateful to my noble friend the Minister; I suspect the Chief Whip will not be as accommodating as he might have hoped when he has his conversation with him.
The Minister made the point that many of the people who supported my amendment had a particular view on this issue, but it is important to point out that all those who sought procedural reasons for why it would be inappropriate also have a particular point of view. That is why we need a proper debate.
On the Private Member’s Bill of the noble Baroness, Lady Meacher, the most disingenuous argument has been that which says, “Well, we’ve got a Bill before us”, when there is not time even for a Committee stage and there are some 200 amendments. It is well-trodden path.
I shall not say any more other than that if I wanted to summarise succinctly, I would probably have said everything that the noble Baroness, Lady Walmsley, said. Not only is this the first occasion that I have praised the Scottish Parliament to the skies but it is the first occasion that I have relied on a Liberal to put into words what I feel about an issue. The Committee should also take notice of what my noble friend Lord Bethell, who was the Minister, had to say. He said that he would like to have done this as a Minister. I do not know whether my noble friend wants to change places with him again so that he can come back and make it happen. It is wonderful how when one is no longer in government one is able to say all kinds of things one was not able to say in government.
On the basis that I believe that this matter needs to be decided by the House, I shall consider the points that have been made and come back to it on Report, but I think that I will want at that stage to test the opinion of the House.
(2 years, 7 months ago)
Lords ChamberMy Lords, it is a great pleasure to follow the right reverend Prelate the Bishop of Carlisle. I give my very strong support to Amendment 47, to which I added my name, and Amendment 52. The key arguments have been extremely powerfully made by the noble Baroness, Lady Finlay, and others.
My main concern is to make it abundantly clear that I and everyone I know who supports assisted dying also want to see the highest possible quality of palliative care across the country—not some kind of patchwork, but universally. I, like all noble Lords, have witnessed wonderful palliative care but also what I might describe as substandard care of dying people. The difference to the patient and the relatives is unforgettable for everybody involved. I visited a beautiful hospice with a warm and professional atmosphere recently, but there were empty beds because it had not been able to raise enough money from whatever it was—jumble sales, et cetera. It is entirely unacceptable that hospices are expected to raise funds to provide their services.
As I said, I also support Amendment 52, which details the types of services that must be provided as part of this country’s commitment to providing accessible and excellent care. The inclusion of the definition of palliative care as provided by the World Health Organization would ensure statutory recognition for this most important aspect of healthcare.
Finally, we need to accept that top-quality palliative care must involve patients’ wishes being understood and respected. Patient choice is more and more accepted throughout the NHS, but it is most important at the end of life. Central to top-quality palliative care will be the right of patients ultimately to decide how much suffering they wish to bear and when they have had enough. The lack of control under the current law will inevitably undermine the patient experience of palliative care, however devoted the staff.
The great majority of dying patients will die naturally, even when assisted dying becomes lawful. However, the great majority of dying people will live and die better knowing that they will have some control when it really matters—when their suffering is no longer bearable.
My Lords, whatever view we take on assisted dying, I think that there is general agreement that the noble Baroness, Lady Finlay, deserves a great deal of support in her two amendments. The predicament that we find ourselves in is that the Minister will probably reject them and say that the Government will ensure that the NHS prioritises these services in the future. The trouble is that we have been here many times before, as the noble Lord, Lord Patel, said. He mentioned 2016, but in 2015 the Economist produced its last quality of death index, as far as I can find out, which basically said that the UK had the best palliative care in the world, but it was very patchy. I am afraid that the situation has simply not moved on.
So the question is: what should we do? Clearly, it is not going to get better if you leave it to the health service. It treats hospices dreadfully, with continuous late contract signing and short-term contract signing by bodies that should be able to agree three-year rolling contracts with those institutions. The lack of priority that is given suggests to me that, unless we take legislative action, we will not see any improvement at all. That is the quandary for us in terms of collectively agreeing a way forward that makes it clear to the NHS that time is up on its neglect of palliative care. We really must take action.
(2 years, 7 months ago)
Lords ChamberMy Lords, I will also speak to Amendment 177. Amendment 20 requires the Secretary of State to ensure that the better care fund, an important and successful initiative, is used to support service integration for children as well as adults. As the Bill stands, the better care fund will continue to be focused exclusively on adults. This is one of a number of amendments that we will debate over the coming weeks which together ensure the children are given equal treatment with adults in the Bill. I assume at the outset that the Minister agrees in principle with us that children and adults should be treated equally in the Bill. Can he give the House an assurance that this is the case—I cannot believe it is not—and if it is not, can he give us the reasons why?
We understand that the fund has focused on adults until now but surely it is time to extend it to children’s services. When the better care fund is all about integration of health and social care, it is hard to understand why children’s services should be excluded. Integrated multiagency support for children and families is key to delivering on the Government’s policy agenda, including for disabled children, those with special educational needs, children supported by the social care system and children during the first 1,000 days of life. Extending the scope of the better care fund to children would greatly accelerate this process of integration and support the Government’s ambitions for children.
I recognise that the funding streams and systems involved in services for children are complicated and it would involve work to extend the better care fund to incorporate those systems. However, this complexity is precisely why good and integrated services for children are so hard to achieve and why the better care fund could be so beneficial.
To illustrate the point, I will quote from a letter I received last week from Julian Wooster, the Somerset director of children’s services. He welcomes this amendment and explains that
“unfortunately we currently have a perfect storm of issues nationally in relation to placements of teenagers with complex needs, which is having a detrimental impact on their well-being.”
Apparently, the Association of Directors of Children’s Services has made a number of submissions, including the following commentary to the review of children’s social care which is under way:
“Despite long standing and ongoing discussions about the needs of children across the children’s social care, mental health and youth custody secure estate, the three systems continue to be separately commissioned, operate under separate legislative frameworks and are the responsibility of different government departments, each with different priorities. This can present practical barriers to local innovations and change. Locally in Somerset the council and NHS colleagues have worked well together on a joint initiative, which is receiving national interest. If the country is to benefit, Wooster claims, there needs to be a joint framework which the better care fund could provide.”
I am aware that officials from the department have been having positive conversations with colleagues from the Children and Young People’s Health Policy Influencing Group and the National Children’s Bureau, and I hope these will continue. But what I hope today is that the Minister will clarify to the House is that he has no objections to the principle of extending the remit of the better care fund to children, and that he is happy to explore how that might be achieved.
I turn briefly to Amendment 177, which seeks to ensure that the needs of those aged nought to 25 are adequately met under the integrated care systems. The amendment would require the Secretary of State to publish guidance on how ICSs should meet their obligations and with which ICS bodies would be required—that is a very important word—to comply. I do not think that I really need to persuade the Government that meeting the health needs of children from birth to adulthood is perhaps the most important investment in the health of the nation. Obviously, good health in childhood is likely to lead to good health in adulthood, to the benefit of every single one of us and to our NHS and taxpayers. We know that integrated care systems will have to cater for all ages in the context of the historically large backlog of appointments and treatments. It will be all too easy for particular groups to be left behind, unless there are specific provisions in the legislation to make sure that they are not.
As this Bill passed through the House of Commons, I was really pleased to hear that the Minister for Health had recognised the importance of meeting the needs of babies, children and young people. In particular, I warmly welcomed his commitment in Committee to ask his officials to develop bespoke guidance spelling out how ICSs should meet their needs. I understand that officials from the Department of Health and Social Care are currently engaged in discussion with the Children and Young People’s Health Policy Influencing Group on the development of that guidance, which is really encouraging.
I hope the Minister understands the reason for this amendment. Given that the Minister in the other place has shown his commitment to the principle of issuing guidance, our purpose here is to ensure that the guidance is published and will have statutory force to ensure compliance with it. I shall not go into the details of the amendment, but those are its objectives. I hope the Minister will be able to agree to this amendment, as it does nothing more than ensure that his colleague’s commitment in the other place is honoured by the new system. I beg to move.
My Lords, the noble Baroness, Lady Masham of Ilton, is taking part remotely, and I invite her to speak.
My Lords, I say a huge thank you to and congratulate Members from across the Committee who have made the most amazingly powerful contributions to this debate on the children’s amendments. I think that we are all just taken aback that there is no mention of children in these crucial clauses. I confess that I was very disappointed in the Minister’s response; we do not seem even to have managed to persuade the Government that the Bill should mention children somewhere, so I think that a number of us will want discussions with him before Report to see whether we can make some progress on making sure that children in future are taken care of. On that basis, I beg leave to withdraw my amendment.