Neurological Conditions

Baroness Fraser of Craigmaddie Excerpts

Thursday 9th June 2022 Grand Committee

[Baroness Fraser of Craigmaddie (Con)]

I thank the noble Lord, Lord Dubs, for securing this important debate. It is, unfortunately, late on a Thursday afternoon, but as he said, it coincides with the publication of the joint patient experience survey, undertaken for the first time by all four Neurological Alliances from across the UK. I declare lots of interests: I am a trustee of the Neurological Alliance of Scotland, I am chief executive of Cerebral Palsy Scotland and I chair the Scottish Government’s National Advisory Committee for Neurological Conditions.

As part of that, this debate and survey took me back to work undertaken in 2018 with the Scottish burden of disease study, which highlighted not only the invisibility of neurological conditions but, to use the not very good language of the study, the “burden” of living with a long-term, complex condition, and the burden that already places on health and care services. This population live for a long time and are already using health and care services, but are invisible. Improvements are therefore difficult to make because of that invisibility. The conclusions and recommendations of the Neurological Alliance survey illustrate how services are patchy and fragmented, but they give us a barometer for where to concentrate action. I have three areas for action that I would like to highlight.

First, we have to better understand prevalence. Data on numbers of all neurological conditions remains woeful. The data we do have is mostly estimates. We seriously underestimate prevalence due to the inaccurate and inconsistent way that neurological conditions are recorded across all healthcare settings. We have to look at the system of coding: how do we make it simpler?

At Cerebral Palsy Scotland, we have campaigned for the development of a national cerebral palsy register, building on existing work from Queen’s University Belfast, supported by the Northern Ireland Government, and work undertaken by the Welsh Government. Working on the principle that if you are not counted you do not count, part of ensuring better services is to prioritise reliable data in order to plan not only for future services but for future workforce needs.

Secondly, we have to deliver seamless care between the different parts of the system and to take a more holistic view of the workforce. It is important to look beyond neurologists. People with neurological conditions come into the NHS through numerous routes. That is part of the problem. The role of the consultant neurologist is to exclude conditions and to provide a diagnosis. It is important that this should be achieved as quickly and as efficiently as possible. However, since people with neurological conditions can live for many years post a diagnosis, the important question is: who will deliver their care? It will not be the neurologist.

As the noble Lord, Lord Dubs, outlined, clinical nurse specialists are key to managing care for some conditions, MS being one of them, but sadly too many other conditions do not have clinical nurse specialists and are therefore left out. We need to be more imaginative about roles and responsibilities in multidisciplinary teams and in planning for future workforce needs, and perhaps to work more collaboratively with other areas, such as MSK and stroke services.

The majority of health and care services required by this population are provided by primary and community care services and by AHPs. People with cerebral palsy, for example, rely on regular access to physiotherapy to prevent further deterioration and to stay well, but access to neuro physios and other rehabilitation services is completely inadequate and comes nowhere near the standards and guidelines set by NICE for adults with CP. It is the same for many other neurological conditions.

The Question refers to services covering the whole of health and care. As the noble Lord, Lord Dubs, also mentioned, this is Carers Week. Carers are an integral part of this workforce too. But I believe that anybody—health, care or social workers—who has any input into delivering care for someone with a varied and complex condition must have access to information and training about that condition. Far too often, it is left to the third sector to pick it up in a piecemeal and underfunded way that cannot hope to reach all those in need.

Thirdly, support for mental health needs to be provided at diagnosis. It has to be an integral part of condition management for children and adults. Too many people, children in particular, report that their mental health needs are not being met at all. If raised with professionals, their concerns are dismissed as being just a part of their condition that they have to live with. There are, in theory, a range of mental health services that can be accessed by people with neurological conditions but, again, there are huge variations in equity of access, both geographically but also for the different conditions.

To address the issues highlighted in the Neurological Alliance’s survey, we require leadership and vision. Will the Minister therefore commit not only to taking up the challenge of the noble Lord, Lord Dubs, but to developing an overall strategy to support people with neurological conditions? In Scotland, we already have the framework for action for neurological care and support, which I was involved in creating. The ambition must be that health and care services support people with neurological conditions to live well on their own terms, with access to the right person at the right time and in the right place. This is essential. I look forward to supporting the Government in achieving this ambition.

Health and Care Bill

Baroness Fraser of Craigmaddie Excerpts

Lords Hansard - Part 2 & Report stage
Wednesday 16th March 2022 Lords Chamber

[Lord Balfe (Con)]

My Lords, my only previous intervention on the Bill came about when I read the proposed clause, and in my capacity as a trained mediator I thought that the original proposed clause was not very sound. The proposed new clause is a huge improvement on that, and I hope it will be looked on with favour. As the noble Baroness said, it is about evening up the power relations.

If you are in a hospital and dealing with anyone who is ill, but particularly small babies, it can be a very difficult experience. My daughter-in-law had two very small twin babies. Gathered around the incubator were one PhD and three decent BScs, and we did not know what to do. We felt quite powerless, but we also felt that it was very difficult to get the doctors to tell us what the prognosis was. In fact, the prognosis was quite good—they recovered and are now both in the school football team—but at the time there was on our part a great sense of powerlessness and a feeling that the doctors did not feel they really needed to communicate with us. That level of powerlessness is what this aims to address.

It is about early access to independent mediation. The first qualification of a mediator is that independence. They will not get a result, and nor should they, unless they have the trust of both sides and unless both sides enter into it in a good spirit, looking for a solution. Finally, if they get a solution, it has to be one that sticks. That is why the amendment refers to

“the senior doctor with overall clinical responsibility.”

This cannot be a mediation where a junior member of the medical staff is sent along, where it has no binding effect and where the senior doctor looks at it and says, “I don’t like that; we’re not going to do that.” There has to be some sort of legislative backing.

However, as noble Lords will have seen, the amendment states:

“Where the authorities … become aware of the difference of opinion they must take … reasonable steps.”


It is all about getting consensus; it is about releasing medical data to both sides, and it is about ensuring that the doctors responsible for treatment are at least obliged to listen to any alternatives that the parents might wish to put forward.

When we last debated this issue, I advised—and indeed this has been done—that we knock out the financial provisions, because we thought that the Government would object and say, “We can’t sign a blank cheque.” However, clearly not all the people listened, because this very morning the Ministry of Justice released its Legal Aid Means Test Review, which states:

“We are proposing to increase significantly both the income and capital thresholds for legal aid eligibility, and remove the means test entirely for some civil cases. These include legal representation for children, and legal representation for parents whose children are facing proceedings in relation to the withholding or withdrawal of life-sustaining treatment.”


It rather shoots the government fox that was running around, does it not? It was said that mediation would encourage litigation, whereas now mediation will discourage litigation, because it will be in the interests of both the health service and the medical profession to make mediation work. In making it work, they will not have days and days in court, but they will have a chance of putting the case to a mediator—having been one, I can tell you that it is a lot cheaper than a barrister—and coming to an agreement without needing the great generosity of our Deputy Prime Minister, Dominic Raab, in offering to pay all these costs. I must say that I was surprised by that statement, but if anyone wants to read it, there are multiple copies in the Printed Paper Office, which is where I got mine.

I hope that the Minister will be able complement his colleagues in the Ministry of Justice by taking a positive attitude to curing this particular result. Otherwise, we will be in a position where the Department of Health and Social Care is saying no to mediation, but where we are now going to get free access to the law courts to run up huge bills. What the Ministry of Justice does not say is which departmental budget will pay for this concession. I would not mind placing a little bet as to which one it has in mind.

So I am asking the Department of Health and Social Care to save itself some money, thanks to the beneficent amendment proposed by the four noble Baronesses and supported by me. We are out to save the Government some money, to make it much easier and to build into the system a right for parents to have a more evenly balanced say in what happens to their child at what is a very difficult and distressing time for many of them.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I did not contribute to the debate on this amendment in Committee, but I did sit and listen to the contributions from around the House. What struck me was that in his characteristically sympathetic response, the Minister had not quite understood the purpose of the amendment and the problems it would solve. He stated that the amendment would place the views of parents and guardians above those of clinicians. I do not see that this is the case, especially with the revised amendment that we have before us. Unfortunately, it is a reality that parent-doctor conflict happens. I declare an interest as chief executive of Cerebral Palsy Scotland, and I have seen far too often the views of parents dismissed by clinicians. No matter how qualified parents may be, or what their role in life outside the hospital may be, they are consistently referred to only as “mum” or “dad”. Too often there is an imbalance of power with doctors, and too often parents are labelled as “difficult” or “sharp-elbowed”, as if wanting to do the best for your child is an irritant, and such parents should be grateful for what they get.

By the time a family is faced with palliative care, they will undoubtedly have been through the care of many clinicians: specialist, community, hospital and, potentially, hospice teams. The parents are therefore often the one consistent factor, and they are especially important when the child is too young or too ill, or unable to voice their own views. It is when parents feel they have not been listened to by clinicians that they resort to formal complaints or litigation. It is a last resort, but too often it is the only resort that is open to them. This amendment seeks to address this by giving them space for a formal coming together of all interested parties at an earlier stage, and so preventing costly and lengthy legal disputes. It does not place one party’s views above others; it does not, as outlined in proposed subsection (3), require the provision of resources for any treatment or require a doctor to provide treatment not in the best interests of the child. It simply ensures that there is a clear framework in these tragic, difficult cases to guide what happens next.

This amendment is designed to solve a problem currently faced by families and clinicians at moments of crisis. I urge the Government to consider it, and I will listen carefully to the response of the Minister tonight.

[Lord Alton of Liverpool (CB)]

My Lords, the House will want to move on quickly, so I will not make the speech that I intended to make on this issue, but I would very much like to endorse what the noble Baronesses, Lady Fraser and Lady Stowell, the noble Lord, Lord Balfe, and my noble friend said in their earlier speeches. I know Connie Yates and Chris Gard, who are the parents of Charlie Gard, who died in 2017 of mitochondrial DNA depletion syndrome. Indeed, I have entertained them here in the House, arranged meetings for them and travelled with them. I entirely agree with what my noble friend is trying to do. This will make mediation work; it will create a proper balance and equality of arms. No parents should have to face litigation in these often tragic and troubling circumstances, so this is a good amendment and I hope the Minister will feel he can accept it.

Health and Care Bill

Baroness Fraser of Craigmaddie Excerpts

Lords Hansard - Part 1 & Report stage
Thursday 3rd March 2022 Lords Chamber

[Lord Warner (CB)]

My Lords, I support Amendment 111 in the name of the noble Lord, Lord Hunt, to which I have added my name, and Amendment 80 in the name of the noble Baroness, Lady Cumberlege. On Amendment 111, I want to emphasise two points. First, GPs are and have always been the gatekeepers to the NHS. Without GPs, there is less primary care and less access to the NHS. Over 90% of patients access the NHS through their GPs and primary care. If you are unlucky enough to live in an area with a serious shortage of GPs, your access to NHS services is highly likely to be diminished and your health put at greater risk.

My second point is that it follows that a shortage of GPs is also likely to contribute to health inequalities, a topic much discussed during the passage of the Bill. In addition, this is likely to mean that you live in a place which the Government say they want to level up. So, if the Minister accepts the amendment of the noble Lord, Lord Hunt, he will be helping to deliver two government objectives: reducing health inequalities and levelling up. What’s not to like? Who knows—he might even get a promotion out of it.

I turn briefly to Amendment 80, which I support and will vote for if the noble Baroness pushes it to a vote. I want, however, to emphasise two points that follow on a great deal from what the noble Lord, Lord Lansley, said. For too long the NHS has relied on buttressing its inadequate system for training home-grown staff by recruiting from abroad. Brexit and tighter immigration policies have significantly reduced this supply line. It will take long-term planning and consistency of purpose over many years to rectify the health and care workforce supply problems.

My second and last related point on workforce is that the track record of the Department of Health on long-term planning is appalling. It is not just me saying that; it was made absolutely clear in the report by this House’s Select Committee on the Long-term Sustainability of the NHS and Adult Social Care, so ably chaired by the noble Lord, Lord Patel, who unfortunately, as we all know, is laid low by Covid. Those who support Amendment 80 should hear the arguments in the debate on Amendment 112, which would support its implementation. The noble and learned Lord, Lord Mackay, thought that something more elaborate than Amendment 80 was required. That may be the case, particularly for social care, but Amendments 80 and 112 complement each other. They are not rivals or alternatives; they put in place a structure thoroughly independent of government and which requires the Government then to pay attention to what has been independently provided.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, it is clear that there remain huge and serious concerns across the House and beyond regarding how the Bill addresses the chronic staff shortages in our health and care services. I say health and care services, because as we know, the staff shortages affecting the delivery of services are not just within the NHS but felt across the board, in health, care and public health services. While this is a current and urgent issue, future workforce planning will be the single most important factor in limiting our ability to deliver the ambitions we all have for the future of health and social care and importantly, the ambitions of the Bill.

Like many other noble Lords, I have the greatest respect for my noble friend Lady Cumberlege, and if she feels that the current duties the Bill places on the Secretary of State in Clause 35 to report at least every five years are inadequate, then I urge the Government to take note. As my noble friend said when she introduced her amendment, she is not alone: at least another 100 organisations are calling for this aspect of the Bill to be strengthened. I ask the Minister today, therefore: if the Government are not planning to accept the amendment, how do they plan to address the challenges of future workforce? How will they assess the future needs of health, social care and public health services? Previous work has not quantified the workforce numbers needed and we cannot wait for another review.

I have a couple of observations on the amendment itself, which I commend in that it does require the Secretary of State to report on this wider health, social care and public health workforce, unlike the current Clause 35, which refers only to the health service. However, I sound a note of caution, because if we simply assess vacancy rates, or get into the mindset of needing to replace like for like, role and service development, which will be essential to support future health and care services as they evolve, risk being stifled, as my noble friend Lady Harding referred to.

Those who hold much of the data on health and care professionals are not only the royal colleges, as the noble Baroness, Lady Finlay, mentioned, but also the regulators. I note that proposed new subsection (4) of the amendment does not mention health and care regulators, which I think should be consulted, in the spirit of my noble friend’s explanatory statement.

Finally, when describing the system in place for assessing and meeting workforce needs, as training and regulation are UK-wide, I hope there will be a spirit of co-operation between NHS England and the devolved nations to ensure that we are training the right people for the right roles across the UK NHS: this needs to be in any future workforce assessment as well. I also cannot understand why we do not accept that the royal colleges in Glasgow and Edinburgh can help us recruit. That seems completely bananas—that is the technical term. Will the Government accept that we cannot put workforce planning yet again into the “too difficult” box? We need to do more and go further, as my noble friend Lady Cumberlege urges. I accept there are no silver bullets, but the regular publication of independently verified projections of future demand and supply of workforce could, over time, create a sustainable model for improvement that would have a positive impact on both patient care and staff experience.

[Baroness Walmsley (LD)]

My Lords, I congratulate the noble Baroness, Lady Cumberlege, on the way she introduced Amendment 80—it was masterful. I point out that she took this amendment from the right honourable Jeremy Hunt, who unfortunately failed to get it through the House of Commons. In doing so, he expressed his regret that, when he was Secretary of State, he was not able to put in place a structure such as the noble Baroness proposes today.

The noble Lord, Lord Stevens, and the noble Baroness, Lady Harding, have both commented that it is self-evident that we need a workforce adequate to meet the demand. To do that, we need to anticipate increasing demand, changes in demographics, population growth and changes in practice. Crucially, we need to put in place resilience to health shocks. If we do not do that, we will continue to struggle to reach the OECD average of 3.7 doctors per 1,000 people, which is reasonable. To get there, we actually need 50,000 more doctors.

However, as the noble Baroness, Lady Jones, pointed out, this is not just about doctors. It is also about nurses and, as we have heard from the noble Lord, Lord Bradley, and the noble Baroness, Lady Whitaker, it is about allied health professionals. We need to train them all in a timely way, given, as the noble Lord, Lord Stevens, pointed out, how long it takes to train all these health professionals.

The Prime Minister claimed in the House of Commons recently that we have 45,000 more people working in the health service than before the pandemic. Unusually, that may be true, but it was not clear whether they were full-time professionals. However, that number bears no relation to the demand. There is no point in quoting raw figures if they are not related to the rise in demand. Moreover, there are fewer GPs than before the pandemic, and that is where people’s access to the NHS begins. If someone cannot get to see a GP, they cannot get a diagnosis or a referral, and their disease gets harder and more expensive to treat. Having too few GPs is not a cost-effective strategy, so I support Amendment 111, tabled by the noble Lord, Lord Hunt, and also his Amendment 168.

Health and Care Bill

Baroness Fraser of Craigmaddie Excerpts

Lords Hansard - Part 2 & Report stage
Tuesday 1st March 2022 Lords Chamber

[The Lord Bishop of London]

My Lords, I declare my interests in the register. I join in thanking the Government for having listened in Committee. I hope that this will make a difference not just to the lives of those whose lives are shorter but also their families, so it is very welcome. I pay tribute to the noble Baroness, Lady Finlay, but also to my friend, the right reverend Prelate the Bishop of Carlisle, who put his name to Amendment 17.

As I say, I welcome this amendment. As the chair of the UK Commission on Bereavement, I have been reminded recently of the inconsistency of palliative care, which other noble Lords have spoken of this evening. It affects not only those who require palliative care but also their family and friends, and it leaves a legacy into bereavement, which we should not underestimate. I too was reassured to hear the Minister say that palliative care must be commissioned, but I share again the concern of the noble Lord, Lord Hunt. In Amendment 16, the word “appropriate” is used, and it is not quite the same thing. Could the Minister reassure the House about the Government’s expectations regarding the nature of palliative care services that the ICBs will commission? How will they ensure that that is delivered in a way that creates consistency? It is care that is rightly deserved by people in our communities, which also reflects the skill and hard work of our palliative care practitioners

[Baroness Fraser of Craigmaddie (Con)]

My 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.

[Baroness Meacher (CB)]

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.

Health and Care Bill

Baroness Fraser of Craigmaddie Excerpts

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

[Lord Aberdare (CB)]

My Lords, both these amendments reflect a desire to give people a greater say over the final weeks of their lives. As a strong believer in patient choice, which is, after all, a very central part of this Bill, I am greatly attracted by and supportive of my noble friend’s Amendment 203.

As several noble Lords have said, we are not very good at thinking about, planning for and managing death, despite Benjamin Franklin’s observation that it is one of only two certainties in this world, along with taxes. This amendment would give people diagnosed with a terminal illness the possibility of some degree of agency in their final days. That seems to me a wonderful idea, but it does of course raise questions about who such discussions would be with, and what qualifications might be needed by the people offering them. So, while I support the amendment, I would want to know more about the practicalities of delivering it, hopefully without having to create a whole new regulated profession of mortality consultants. I hope therefore that the Minister will respond positively to my noble friend’s suggestion of discussions on how the amendment might work; I will be interested to hear his response.

On Amendment 297, which I also support, I make only two brief points. First, I very much agree with what everybody has said that tonight is not the time to be discussing the merits of assisted dying; that is not what this amendment is about. Many Members on both sides of the argument have made it clear that Parliament needs to decide this issue, and the amendment from the noble Lord, Lord Forsyth, seeks to find a way of making that possible. I feel the same sort of alarm as my noble friend Lady Wheatcroft in finding myself on the opposite side to that of the noble and learned Lord, Lord Mackay, but, with the greatest respect, I think he himself said we were waiting for a decision from Parliament before the Government could act on this. In that case, there has to be some way or process for making such a decision happen. That is exactly what the noble Lord, Lord Forsyth, is trying to produce with this amendment. No doubt there are ways of improving how that is done, maybe by giving more time to my noble friend Lady Meacher’s Bill. This responsibility is Parliament’s to resolve, and I cannot believe that, in this great Parliament, we cannot find a way of doing it.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I rise partly because my noble friend Lord Forsyth referred to me earlier and partly because I wanted to clarify what is happening in the Scottish Parliament. There is not actually a Bill in front of the Scottish Parliament. The Orkney MSP, Liam McArthur, carried out a consultation which was very wide-ranging and closed only at the very end of December. Liam McArthur has reported that the submissions to his consultation were wide-ranging and unprecedented, and I look forward with great interest to reading some of them. You can look some of them up. I commend the Scottish Partnership for Palliative Care’s website; its submission is published there. The Neurological Alliance of Scotland also published a submission—I declare an interest because I am a trustee of the latter.

Both those submissions illustrate that this is a very complicated issue, as noble Lords have acknowledged, and there are many things that need evening out before we even get to potentially having draft legislation—a Bill or whatever it is; I am still learning parliamentary procedure. I find it interesting that my noble friend Lord Forsyth mentions that there might be a majority for assisted dying in the Scottish Parliament. I remind him that there is currently a majority for independence in the Scottish Parliament, but that does not mean that the people of Scotland want independence.

In my short time in this House, I have seen many amendments that may have been worthy in their own right but were in the wrong place in the wrong Bill. I think Amendment 297 in the name of my noble friend—I feel very nervous suggesting this to such an esteemed colleague—may possibly be the wrong amendment in the wrong Bill.

[Baroness Walmsley (LD)]

My Lords, I rise to speak on my own behalf; I am not representing anybody. The substantive issue is a conscience issue. I do, however, support the amendment in the name of the noble Lord, Lord Forsyth, because I think it is a discussion whose time has come. I am very impressed and pleased that noble Lords have resisted the temptation to discuss the substantive issue this evening, because all of us here understand—unfortunately, many outside do not—that this amendment is not about the substantive issue.

However, I am somewhat disappointed that the noble and learned Lord, Lord Mackay of Clashfern, wishes to knock it out on a procedural point. I think it is much more important than that. The noble and learned Lord is a wily old politician, and he knows very well that if you want to defeat something, it is often a very good idea to try to get rid of it on a procedural point. He suggested that we should use the Private Member’s Bill procedure. He has been in this House long enough to know that very few Private Members’ Bills are taken up by the Government and given time, and if they are not given time, they are going nowhere. But it is clear that this country wishes to discuss the matter and have Parliament decide on it.

The noble Lord, Lord Moylan, suggested that we cannot put anything in the Bill that the Government do not want to do. I remind him that every time we defeat the Government on an amendment, we are asking them to do something they do not want to do—and we did it 14 times last week on the policing Bill.

I have one other point. The right reverend Prelate the Bishop of Carlisle talked about vagueness. I think the noble Lord, Lord Forsyth, has been deliberately vague, because it is for the draft Bill to be specific. That is important because we need something very specific to discuss, with specific powers and safeguards that Parliament has put in. Without that, we would have all the fear that we have around the country, much of which has been expressed in our inboxes in these last few weeks. People are afraid of what might be in the Bill and what Parliament might pass, and only if we have a specific set of proposals in front of us can we amend it to put in the proper safeguards. Parliament can then decide, and people can take their view about it. I think that will take away a lot of the fears of people who believe that there will be no safeguards, because I am convinced that this Parliament would put in proper safeguards. If it did not, a lot of noble Lords would suggest some that jolly well should be there, and rightly so. For those reasons, I hope the Minister will consider the amendment in the name of the noble Lord, Lord Forsyth.

On the amendment in the name of the noble Baroness, Lady Meacher, again, I am so glad that she said it is a probing amendment, because other noble Lords have suggested that the drafting would need to be changed to avoid some unintended consequences. I am quite sure that the noble Baroness would do that if it was more than a probing amendment. She is asking for something that patients need: choice at the end of life. I hear what the noble Baroness, Lady Finlay, said about what is already in place. She is an expert on this. It could well be that a conversation needs to be had about whether there needs to be anything further in legislation to strengthen the availability of what the noble Baroness, Lady Finlay, talked about, which sounds absolutely excellent. So I am not expressing a definite opinion on that amendment.

I hope the Minister will consider the amendment in the name of the noble Lord, Lord Forsyth, because we, as practical politicians, know that in the real world—in this Parliament—the Bill brought forward by the noble Baroness, Lady Meacher, is not going anywhere, but we need to have the discussion.

Health and Care Bill

Baroness Fraser of Craigmaddie Excerpts

Committee stage
Thursday 20th January 2022 Lords Chamber

[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.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I support Amendment 163 in the name of the noble Baroness, Lady Finlay, to which I was delighted to add my name.

Perhaps I may remind the Minister of his very first session at the Dispatch Box. He confirmed to your Lordships that the Government had full confidence in the processes at NICE. In a follow-up letter to me he wrote:

“The National Institute for Health and Care Excellence (NICE) is the independent body that develops authoritative, evidence-based guidance for the health and care system to drive best practice. NICE is one of the few organisations with a remit spanning the NHS, public health and social care, meaning it is well placed to provide a system-wide perspective and support Government priorities for the health and care system.”

Health and Care Bill

Baroness Fraser of Craigmaddie Excerpts

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

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I support both these amendments, and I refer to my interests as laid out in the register as a trustee of the Neurological Alliance of Scotland and chair of the Scottish Government’s National Advisory Committee for Neurological Conditions.

There is evidence, as we have heard, that people provided with early palliative care and support in all settings, as is laid out by Amendment 52, achieve better outcomes and, as the right reverend Prelate the Bishop of Carlisle said, that it prevents unwarranted hospital admission. I would commend the Minister to look at the model in Scotland, where the Scottish Partnership for Palliative Care brings together health and social care professionals from hospitals, social care services, primary care, hospices and other charities to find ways of improving people’s experiences of declining health, death, dying and bereavement.

Perhaps what differentiates palliative care from just good care is the awareness that a person’s mortality has started to influence clinical and more personal decision-making. However, I beg to disagree with the noble Baroness, Lady Finlay. This is not about the fact that we are all going to die; it is about life. It is about the care of someone who is alive—someone who still has hours, days, months or years remaining in their life. It is about optimising well-being in those circumstances.

A major problem for people who need and would benefit from specialist palliative care is that they are often referred very late to such services or not referred at all, because such services are erroneously perceived by many other professionals, and the public, as relevant only at the end of life. Unfortunately, access to specialist palliative care is therefore not available to people dying with neurological conditions. Although there has been some progress, most people dying with terminal or progressive neurological conditions die under the care of generalist health and social care teams, in hospitals, care homes or at home. The recent research by Marie Curie, quoted by many noble Lords this evening, points out the patchy access to palliative care, and people with neurological conditions are overrepresented in not being able to access it.

There is a very high level of unmet need. As the noble Lord, Lord Patel, mentioned, we should be angry that end-of-life care is not available—and for over half of people with neurological conditions, I am angry. For those who are receiving support from generalist teams, we know that hospital beds and suitable care packages are extremely scarce, especially as the health and care system seeks to cope with the Covid pandemic and its impact. As a result, we have a problem, and people are facing the end of their life without the support they require.

In a caring society, palliative care should be embedded into this Health and Care Bill. It should be a core service, available to all those who need it. I urge the Minister to support these amendments.

[Lord Kakkar (CB)]

My Lords, I intervene briefly to support the amendment moved by my noble friend Lady Finlay. In so doing, I would like to put a question to the Minister. In the context of contemporary, 21st-century delivery of healthcare, how can it be justified that palliative care is not considered part of the continuum and has to be funded in a different way? How can it be that those specialists delivering palliative care are unable to integrate it into the broader considerations of delivery of healthcare in their institutions and systems? It seems completely counterintuitive that that continues to be the position in our country. If Her Majesty’s Government were minded not to support these amendments, it would be helpful to understand how they justify that position and justify differentiating palliative care from other services that are rightly fully funded by the state.

Health and Care Bill

Baroness Fraser of Craigmaddie Excerpts

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

I thank noble Lords who have expressed an interest in these amendments and Ministers who have engaged so far. I look forward to hearing from the Minister on these important amendments, which are really all about recognising, as I said at the start of my remarks, that the NHS is a UK institution embodying United Kingdom values.

[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.

GPs: In-person Appointments

Baroness Fraser of Craigmaddie Excerpts

Tuesday 19th October 2021 Lords Chamber

[Baroness Fraser of Craigmaddie (Con)]

My Lords, does the Minister agree that we are in danger of looking at this issue the wrong way around? Given that there is much ongoing research into clinician and patient experience of virtual appointments, that primary care consists of many more people than just GPs, and that complex diagnoses are usually given by specialist consultants, there are multiple reasons from both the clinical and patient viewpoint for what medium to choose. Can the Minister reassure the House that there will be no blanket targets imposed on professionals for the percentage of appointments that need to be face to face, virtual or by telephone, and that GPs, patients and other clinicians are able to assess between themselves what is the most efficient medium to ensure the best possible outcome for the patient?

[Lord Kamall (Con)]

What is important here is that we leave it to the relationship between the GP and the patient to decide the best form of consultation. Sometimes that will be face to face and, if the patient wants a face-to-face consultation but the GP is unable to provide one, they have to give a good medical reason why not. However, we can balance that with online and telephone appointments.

Women’s Health Outcomes

Baroness Fraser of Craigmaddie Excerpts

Thursday 8th July 2021 Lords Chamber

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I, too, thank my noble friend Lady Jenkin of Kennington for this important debate and for her awesome—as the noble Lord, Lord Rooker, described it—opening speech. Given the time constraints, I simply want to make two points.

First, women’s health is not only important for all the reasons noble Lords have already outlined. Women’s health issues have far-reaching implications beyond just the health of women. When looking at positive outcomes for families and children, particularly disabled children, the burden of care still, in 2021, falls disproportionately on mothers. Therefore, ensuring continued good health for women has consequential effects on the well-being and good health of the rest of the population, as well as on women themselves.

Secondly, I want to address the importance of data, including what data we are collecting, how we are collecting it and what we might do with it to improve women’s health outcomes. Good data can ensure that women’s issues are addressed in research and lead to practical improvements in service delivery. NHS Greater Glasgow is currently undertaking a project funded by the Scottish Government to develop an epilepsy register for Scotland so that appropriate continuous care can be successfully delivered. I declare an interest as, in my capacity as chair of the National Advisory Committee for Neurological Conditions in Scotland, I have been able to monitor the progress of this work. The project team has started by focusing on women with epilepsy because, as was previously noted by the noble Baroness, Lady Walmsley, there are risks associated with pregnancy. In particular, taking epilepsy medicines containing sodium valproate can cause serious harm to an unborn baby. The project has identified who holds what data: GP, consultant, midwife or pharmacist. These data sources may not even talk to each other but, once the data has been gathered, consultants can cross-reference to see who is taking what medication, whether medication is being missed and whether appointments are being missed so that the highest-risk women can be identified and their care actively managed. Early results are showing that the development of a register is leading to significant improvements in outcomes for women with epilepsy and their babies.

This is just one project in one area covering one condition. I hope that this work will find a way to be scaled up to cover more conditions in more areas. Think what could be achieved if we were able to ensure that the information gathered and stored regarding women’s health could be co-ordinated in such a positive way, for it remains the case that if you are not counted, you do not count. I believe that the Covid pandemic has illustrated the importance of robust health data and has given us the impetus to ensure that such data is co-ordinated across services. I ask that the Government’s first women’s health strategy for England ensures that women’s health data is identified, collected and used to inform service improvements so that we can see actions and results to improve women’s health outcomes.