NHS and Social Care: Winter Service Delivery

Lord Bishop of Carlisle Excerpts

Thursday 25th January 2018 Lords Chamber

[The Lord Bishop of Carlisle]

My Lords, as ever, much of what I might have wished to say has already been said so I will not repeat it. I will try to keep my contribution brief.

In one sense, the current situation in health and social care, which, as we have heard, has been widely reported and analysed by the media, is nothing new. Admittedly, the number of patients with flu this year, especially elderly ones, has not helped. Last year, though, in its document entitled Winter Warning, NHS Providers commented that, “NHS performance last winter”—that is, 2016-17—

“showed unacceptable levels of patient risk as growing demand outstripped NHS capacity”.

Every winter has brought its own challenges, and short-term problems and pressures are not necessarily indicators of long-term difficulties. At the same time, though, as we all know, and as was pointed out by the noble Lord, Lord Macpherson of Earl’s Court, an increasingly large and elderly population with multiple morbidities has been steadily putting a huge strain on both the NHS and social care in this country.

The delivery of services is not an issue only over the winter period: it is a constant headache, not least in accident and emergency departments across the country, but also in care homes and private homes that are struggling to cope. As the noble Baroness, Lady Wheeler, pointed out, in a recent survey, no less than 91% of trusts reported a lack of social care capacity as winter approached, despite the promise made in the March 2017 Budget of an extra £1 billion for social care in 2017-18.

This emphasises the need for two things to happen, one of them short term, the other long term. The short-term need should be relatively straightforward to meet. It involves not only planning for next winter now but making sure that the necessary funding is released well before the winter actually arrives. As the noble Baroness, Lady Wheeler, reminded us, in the Budget on 22 November 2017 the Chancellor of the Exchequer committed £337 million to address winter pressures. That was very welcome but it came about four months too late. Health and social care providers are clear that any extra funding to help with the demands of the winter period needs to be committed by the end of July at the latest to enable effective planning.

The longer-term need is rather less simple but even more important. This is the need to tackle the thorny issue, alluded to several times, of the long-term sustainability of both the NHS and social care. I had the privilege of sitting on the ad hoc Select Committee of your Lordships’ House chaired by the noble Lord, Lord Patel, which produced a report on this exact topic last year. Unfortunately, the report came out just before the general election, which means that we are still awaiting a response from the Government and proper debate on its many recommendations.

Those recommendations relate directly to the subject under discussion this afternoon. Recurring winter pressures cannot be separated from the pressing need to address the ongoing issues around sustainability, including personal responsibility, increasing integration—we welcome the new Department of Health and Social Care—workforce planning, a model for funding and, above all, a non-party-political group, rather like the OBR, to advise the Government of the day about long-term requirements.

I greatly look forward to that debate in the hope that it may help to mitigate the need for ongoing debates such as this.

Mental Health: Children and Adolescents

Lord Bishop of Carlisle Excerpts

Wednesday 16th November 2016 Lords Chamber

[Lord Prior of Brampton]

The noble Lord raises an important point. Interestingly, the spend on mental health in 2015-16 is up by 8.4% on the previous year compared to 3.7% for health spending overall. So there is clear evidence that the money that we have been talking about is getting through. The local transformation plans to which the noble Lord refers are being incorporated in all the strategic transformation plans. So there is evidence that it is getting through. It is taking longer than the noble Lord and I and others would wish, but when Theresa May became Prime Minister one of the things that she said on the steps of Downing Street was that she put mental health near the top of all her priorities. There is serious hope now that the money promised by the Government is getting through to the front line.

[The Lord Bishop of Carlisle]

My Lords, the commission highlighted the importance of valuing the workforce, but a 2014 survey of teachers and lecturers indicated that about 55% of them reckoned that their work was seriously damaging their own mental health. Have Her Majesty’s Government any plans to address that particular issue so that the mental health of teachers can be improved and so they are better equipped to help and improve the mental health of their pupils?

[Lord Prior of Brampton]

My Lords, I cannot answer that question effectively and would like some time to think about it. Clearly, the mental health of teachers, nurses and doctors is critical. Certainly in the medical profession we are doing quite a lot to help doctors who are going through periods of mental health problems. If it is all right with the right reverend Prelate, I shall reflect on his question and write to him at my leisure.

Access to Palliative Care Bill [HL]

Lord Bishop of Carlisle Excerpts

Friday 23rd October 2015 Lords Chamber

[The Lord Bishop of Carlisle]

My Lords, I declare an interest as a fairly active patron of Eden Valley Hospice in Cumbria and of Hospice at Home Carlisle and North Lakeland. They work together to provide outstanding end-of-life care for people in the community as well as for those in a hospice bed. Like so many others, I am also most grateful to the noble Baroness, Lady Finlay, for initiating this significant Bill.

Reflecting on the now defunct Liverpool care pathway, several medical practitioners of my acquaintance suggested that the real problems lay not in the principle behind it, which was essentially a good one, but in the lack of training given to staff who used it and in the sometimes inadequate way they communicated what was going on, especially to relatives.

Interestingly, training and communication are two of the issues that emerge most clearly from the plethora of recent documents on palliative care, including the ombudsman’s report and those briefings from charities that most of us will have received, however belatedly. They are also two of the issues that are addressed head-on by the Access to Palliative Care Bill, and they have already been mentioned several times today by your Lordships. That is why I want to make training and communication the focus of my brief remarks today.

First, I shall address training. Like end-of-life care itself, as the noble Baroness, Lady Finlay, mentioned in her introduction, and as the noble Lord, Lord Ribeiro, has just explained, the training offered to generalists in this whole area is distinctly patchy. In some trusts it is excellent: indeed, one of the main tasks of a consultant friend of mine who is an end-of-life lead is to educate the whole workforce in her huge hospital. That includes training in electronic care planning and advanced decisions. In other trusts it is not so good and, as a recent article in the Nursing Standard pointed out, a lack of training can be exacerbated by staffing shortages and the stress that results. No wonder the chief executive of Marie Curie says that,

“the government must make training in care of the dying for all health and social care professionals a priority”.

This is addressed in Clause 3 of the Bill.

I should also mention in this context the importance of providing training for prison staff that addresses the particular needs of prisoners and their families. In yesterday’s debate on palliative care, my right reverend friend the Bishop of Rochester indicated that there is some very good practice on this in prison but, as in the wider population, it is inconsistent. With an ageing prison population, it is important to recognise that prison staff and prisoners need some basic understanding of palliative care needs. It would be helpful if this ultimately could be mentioned in the Bill.

I turn to communication. This applies in part to communication across trusts and between members of multidisciplinary teams. Without good communication and close collaboration, people can easily miss out on good end-of-life care plans and specialist support. But it also applies to communication with patients and with their families, which, as the ombudsman’s report makes clear, is sometimes woefully inadequate. The importance of this sort of communication is highlighted by the House of Commons Health Select Committee report, which makes it the second priority of care and indicates that there is occasionally a reluctance on the part of healthcare professionals to talk about end-of-life issues. There is of course an overlap here with training. It is vital that staff should be able to recognise and acknowledge the spiritual dimension of palliative care. In yesterday’s debate I referred to the close link between spirituality and compassion.

Then there is the crucial matter of communication with, and care for, children and adolescents at the end either of their own lives or of the lives of their parents and friends. Palliative care for children has often been neglected in the past, and some major children’s hospitals still have no palliative care team. There is much more that can and no doubt will be said on this very important subject.

I am very glad to give this valuable Bill my warmest support and that of the Church of England. A relatively small initial financial investment, combined with more effective use of existing resources, could make a huge difference to the cost, consistency and overall quality of the care that one day every one of us will need.

Palliative Care

Lord Bishop of Carlisle Excerpts

Thursday 22nd October 2015 Grand Committee

[The Lord Bishop of Carlisle]

My Lords, today’s debate, for which I am also most grateful to the noble Lord, Lord Farmer, has prompted me to take a fresh look at some of the numerous documents on palliative care that have been produced over the past two years, including of course the ombudsman’s report, Dying Without Dignity. As I read the documents, I was struck and impressed by their general agreement that palliative care at the end of life involves more than simply the relief of physical pain, crucial though of course that is. Suffering is not always the same as pain and it is often more difficult to ease, which is why the word “holistic” is often used to describe the kind of care that is needed. I cite as an example the NICE quality standard which is regarded by NHS England as,

“a comprehensive picture of what high quality end of life care should look like”.

In particular, as we have been reminded by the noble Lord, Lord Farmer, reference is made to spiritual and religious support not only for patients but for relatives, carers and staff. Such support is an essential element in end of life care. Religious needs are those experienced by people with specific beliefs, such as Christian, Jewish or Muslim. Spiritual needs are more generic; they are experienced by everyone regardless of belief, and since the early 1990s there has been a growing recognition of the importance of spirituality in palliative care, not least in most of our hospices.

So, at a time when some are questioning the need for healthcare chaplains, I suggest that recent reports actually make a compelling case for their retention. Their special training and expertise equip them to offer compassionate spiritual care to everyone, as well as religious care to those who need it; and “everyone” includes relatives and staff. Compassion is something of a buzzword in the NHS these days, and it has very close links with spirituality. For that to be effective, though, it is essential that chaplains should be included in end of life plans for patients and are treated as full members of multidisciplinary care teams. In many trusts that is already regarded as standard practice. Last week, for instance, I was talking with a palliative consultant who is the end of life lead in a large hospital in the north of England. She mentioned the electronic order sets which automatically trigger requests to the chaplaincy team and to the end of life nurse. That, she said, has made an amazing difference, and has meant that every patient dying in that trust has access to a chaplain. There are also a growing number of chaplains attached to health centres who are able to care for dying patients in the community, which, as the noble Lord, Lord Farmer, reminded us, is where most people want to die, but where at present 50% do not.

However, that is not a universal picture. As the ombudsman’s report indicates, the quality of end of life care is patchy, and that is true spiritually as well as physically. As we have been reminded, there will of course be a further opportunity to consider this tomorrow, but meanwhile I am very grateful for this opportunity to pay tribute to the contribution made by chaplains and their army of volunteers to end of life care in this country, not least by promoting compassion and respecting the dignity of everyone involved. So, may I ask the Minister whether he agrees that it is desperately important that we should take their work seriously if the holistic care we offer to all is not only to remain at the top of the league, but also to go on improving in the years to come?

Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015

Lord Bishop of Carlisle Excerpts

Tuesday 24th February 2015 Lords Chamber

Finally, there is a most difficult question which has not been raised: the religious conviction of some that manipulation of embryos is basically wrong and against God’s will. I am afraid I have no answer to that; I am not privy to God’s will. However, I know that parents who have watched affected children suffer and in turn have suffered themselves are hoping and praying—yes, they are praying—that they will be able, some day, to have a child who is normal. What a boon that would be, and I very much look forward to us passing these regulations today.

[The Lord Bishop of Carlisle]

My Lords, for those among us—and I include myself—who are not scientists, this is a demanding topic. In fact, I guess that even those who are scientists do not always find it exactly straight- forward. A significant part of that complexity derives not from the difficulty of the science itself but from the different—sometimes diametrically opposite—things that we are told by people who have been studying and researching mitochondrial transfer for many years.

Like many others in your Lordships’ House, I have recently attended a number of presentations, drop-ins and seminars on this subject. I have also read through the many written representations that have been referred to and which most of us will have received. They mirror the speeches being made in this debate.

On the one hand, we are assured, as we have been today, that scientists are clear about both the safety and the efficacy of mitochondrial transfer. It is no different from giving a blood transfusion or changing the batteries, so there is no problem there. On the other hand, we are warned by scientists—not just the correspondents to whom my noble friend Lord Turnberg referred—that mitochondrial transfer is a form of genetic modification which does affect the germ line, albeit not the nucleus, and could have a potential impact on the traits of any children, and their children, born as a result of this procedure. Some suggest that this would involve crossing a key bioethical threshold that we could later regret, and we are all aware of the pressure that is being brought to bear on us from elsewhere in the world.

In addition to all that, from a purely ethical point of view, as my noble friend Lord Deben mentioned, one form of treatment, maternal spindle transfer, is for many people clearly preferable to the other type—pronuclear transfer. Unfortunately, as my noble friend Lord Patel pointed out, the spindle method is currently less stable, although that may change.

The so-called “genius” of the Church of England has always been its via media—the middle way—and that is where I find myself today. Over the last few years, we have consistently taken a fairly nuanced position on this subject. Despite some misleading press reports, we are not in principle opposed to mitochondrial transfer, and it makes a pleasant change for the church not to be against something. Indeed, I explained this to the Minister, Jane Ellison, before the debate in the other place and she referred to our conversation in her comments there. But, at the same time, we have always counselled a degree of caution, given the potential implications of this development. In particular, we have always argued that the research tests into safety—set out quite clearly as essential before any further move is made by no less than the HFEA expert panel in 2011— should be completed and reported before these regulations are approved. That has not yet happened. We are therefore disappointed by the element of rush now, which I guess could be occasioned by the forthcoming election. I was talking this morning with a GP friend, who said that she could not imagine any drug or treatment being authorised before all the necessary tests had been undertaken and reported. In this case, that clearly, according to the HFEA’s own recommendations, has not been achieved, even though, as we have been reminded, the research has of course been taking place for several years.

Like every other Member of your Lordships’ House, I am very keen to see help offered to couples who face the terrible prospect of a child born with mitochondrial disease. I also know which of the conflicting scientific viewpoints I would rather believe. To reiterate, both personally and as a representative of the Church of England I am basically very much in favour of this development. However, I cannot ignore the compelling arguments against pushing this through in haste, and for that reason I am minded to vote for the amendment proposed by the noble Lord, Lord Deben. I know that it is regarded by some as a wrecking amendment. I do not see, read or hear it in that way. I would hope that any Joint Committee’s work could be completed without undue delay. For the same reason, if we reach a Division on the initial Motion before us, I will feel compelled to abstain.

[Viscount Ridley (Con)]

My Lords, I must declare an interest in that much of the groundbreaking science of mitochondrial donation has happened at Newcastle University, where my wife also works, although in a different field. Also, some of the relevant work has taken place on the premises of the International Centre for Life in Newcastle, of which I am honorary president. I am also a fellow of the Academy of Medical Sciences.

I shall be as brief as I can. We have a duty to consider five simple questions. Is it legal? Is it safe? Is it necessary? Is it ethical? Is it rushed? It seems to me that, as the noble Lord, Lord Turnberg, said, we have clear evidence that it is legal for Parliament to enact these regulations. They are explicitly foreshadowed in the Human Fertilisation and Embryology Act 2008. They are not covered by the clinical trials directive. They are not eugenic, and therefore not in conflict with the EU Charter of Fundamental Rights.

Is it safe? We have heard that the safety and efficacy of both techniques have been established as far as is possible by exhaustive study, independent scrutiny and public consultation. The case of the Chinese example, as the noble Lord, Lord Patel, has said, is simply not relevant to this case. This was an obstetric disaster that happened to one woman and was a technique that was intended to cure infertility and had nothing to do with mitochondria anyway. As far as we can tell, the mitochondrial transplant element of that technique worked.

As for the infertility question, I have to say that I think my noble friend Lord Deben has misquoted a very distinguished scientist, Professor Robin Lovell-Badge. I was in the same meeting and I did not hear him say the words that the noble Lord said. He made the point that some techniques that are already legal and used probably perpetuate some forms of infertility. We therefore already accept that some techniques that are used may produce children who lead very happy lives but will themselves require assisted reproduction.

Incidentally, I completely agree with my noble friend Lord Deben that we should not argue from authority, that the consensus of scientists may sometimes be wrong and that we should make up our own minds. As always in science, however, it is the evidence, not the existence of a consensus, that convinces me that this is efficacious and safe.

Is mitochondrial donation necessary? If there is one thing that we have learnt from 30 years of in vitro fertilisation, it is that adoption is not a full alternative to conception. Were we right to give women assisted reproduction so that they could have their own children? Yes. Millions of happy mothers bear witness to that.

Is pre-implantation genetic diagnosis an alternative in this case? Often it is not, because it is more likely, as we have heard from the noble Lord, Lord Patel, because of heteroplasmy, to produce an afflicted child. I was also surprised to hear the noble Lord, Lord Deben, say that the reason we are going ahead with the techniques of maternal spindle transfer and pronuclear transfer is “about money”. I just do not think that is the case. It is very clear, as we have heard from the noble Lord, Lord Patel, and others, that there are very good reasons to go ahead with both these techniques.

Is it ethical? We do not, in the 21st century, have the luxury of deciding these things in a theological way. If we block an advance of this kind and it turns out that it could have eliminated suffering safely, then it is on our consciences in a way that it would not have been 30 years ago, when we could do nothing. In losing our impotence, we also lose our innocence. In other countries, this decision would be up to the regulator already. Here, uniquely, we have explicitly said that Parliament should first decide whether the regulator can take such cases, which is what we are deciding today.

Once Parliament has decided that mitochondrial donation is not likely to be unsafe, and the HFEA has judged that it is safe, it should be up to families to decide whether they wish to use it. It would be unethical for the state to deny them that choice.

We may become the first country to do mitochondrial donation, but there is nothing wrong with that. Britain has been the first with most biological breakthroughs, from natural selection to the double helix, from monoclonal antibodies to in vitro fertilisation. In every case, we look back and see that we did more good than bad as a result.

People with Learning Disabilities

Lord Bishop of Carlisle Excerpts

Thursday 12th June 2014 Lords Chamber

[The Lord Bishop of Carlisle]

My Lords, in this debate we are asking Her Majesty’s Government to do three things. The first is to recognise the situation that currently exists, as we have heard, with regard to people with learning disabilities. It has been pointed out that the situation is one of considerable inequality. Even when all the other factors have been taken into account, the disparity in mortality between people with and without learning difficulties is alarming. There does not appear to have been any significant change in this disparity over the past decade or more. The statistics speak for themselves. They have already been quoted more than once so I will not repeat them.

Of course, there have been some positive changes since the confidential inquiry, including some proactive adjustments and some sharing of best practice. However, as the main causes of premature mortality have been identified and are largely avoidable, there is a clear need for a change in healthcare culture—or, as the noble Lord, Lord Rix, called it, a change in attitude. The current quality and effectiveness of health and social care given to people with learning disabilities is deficient in various ways, including the provision made for attendance at clinic appointments and investigations. The issues are indeed complex, but not impossible. Recognising the problem must be the starting point for change at both national and local level.

Secondly, we are asking Her Majesty’s Government to collect some further information, not least through the central body that has been referred to. In particular, we need to know about the number and location of learning disability liaison nurses, who provide a wide range of vitally important services and support to people with learning disabilities. These nurses have been shown to make a huge difference, for instance by research done at St George’s Hospital, University of London. In some areas, they are key members of community learning disability teams. They provide advocacy and help to patients, advice to doctors and other healthcare staff, and assistance to carers and their families. One in 50 people in this country has a learning disability, but some trusts employ no learning disability nurses.

It would also be helpful to know why, as the noble Baronesses, Lady Hollins and Lady Andrews, observed, less than a quarter of those with learning disabilities in England are recorded as such on GP registers. That has implications for critical referrals to specialists, as well as to palliative care services. There seems to be no system at the moment to identify individuals with learning disabilities who have a life-limiting condition.

Thirdly, we are asking Her Majesty’s Government to take immediate action in certain areas. They include ensuring that healthcare staff are adequately trained in caring for those with learning disabilities—a point made by the noble Lord, Lord Ribeiro. As it happens, that is another potential role for learning disability liaison nurses and a further argument in favour of having as many of them as possible, and at least one per trust. It is vital to ensure that there is no discriminatory thinking about quality of life, and to provide those with learning disabilities with equal access to healthcare.

The second area for action is informing patients, carers and families about the existence of community learning disability teams where they exist. Many are currently unaware of the potential help that they so desperately need and which could be available to them.

A third area for action involves promoting advocacy of various kinds for people with learning disabilities not only by healthcare professionals but by the voluntary sector. I have recently been involved with the commission looking into the effects of welfare reform in Cumbria. One of our principal findings has been that advocacy—usually unpaid—for some of the most vulnerable people in our society is crucial to their mental and material well-being. I think that the noble Lord, Lord Ribeiro confirmed that the same applies to those with learning disabilities who are in need of healthcare.

A fourth area for action is inviting both clients and carers to be involved in the design and monitoring of services—the kind of services to which the noble Lord, Lord Rix, referred: patient passports and annual health checks. I know that NICE is already looking at providing that with its guideline development groups, and NHS England wants to do the same with consultative and participative care planning.

The Department of Health has already set several provisional goals, including closing the mortality gap between those with and without learning disabilities within three years. This is an absolutely excellent aspiration. A large part of the purpose of this debate is to encourage its delivery. As the noble Baroness, Lady Hollins, pointed out, updates involving data collection on premature mortality in those with learning disabilities have been promised, but they have not yet been produced. Further delay means more people with learning disabilities dying prematurely and, in some cases, avoidably, so I hope that we may soon see some tangible action in support of those who desperately need it.