NHS Pensions: Taxation

Baroness Jolly Excerpts

Tuesday 9th July 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

I absolutely share my noble friend’s desire for a speedy response. He is right that the evidence has come forward and that the issue is affecting front-line services, which is why we are keen to bring the consultation forward as quickly as possible and resolve it. He is also right that those in the Treasury will have seen the evidence and it is right for them to consider it. It is important to understand that the consultation is about the implementation of tax policy, not changing it. That would be a separate question for the Treasury team.

[Baroness Jolly (LD)]

My Lords, the Nuffield Trust found that two-thirds of GPs are retiring early for tax reasons, and because of burnout, the level of extra training required and stress. The Secretary of State is reported as saying that this tax issue is the area that concerns him most about the GP workforce—and well he might worry. Given the Minister’s earlier reply to the noble Baroness, Lady Finlay, when will we see the figures on the decline in GP early retirement?

[Baroness Blackwood of North Oxford]

The noble Baroness is right that this is an important aspect of the recruitment and retention of GPs in particular, which is why we are bringing forward the consultation. As I said, we have been working closely with representative bodies, including the BMA and others. When we brought forward the five-year contract for general practice, announced in January, part of that was to provide greater certainty for GPs to plan ahead. Part of the work we have done is looking at other aspects that will ensure recruitment and retention. This includes, as we have discussed before, funding towards 20,000 extra staff working in practices, remaining committed to recruiting an extra 5,000 GPs and looking at targeted enhanced recruitment schemes, which include a £20,000 salary supplement to attract doctors into GP specialty training. The noble Baroness will understand that it takes a little time for these policy changes to be reflected in the data, but she can have no doubt that this is a policy area in respect of which the Government are absolutely determined.

National Health Service: Bullying

Baroness Jolly Excerpts

Wednesday 3rd July 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

I thank the noble Lord for his question, which is a follow-up to a recent Question on this. This is exactly why the Government have brought out a manifesto commitment to tackle violence and abuse against staff, including legislation that has already brought forward one conviction. NHS Improvement and NHS England have reviewed what central support arrangements should be provided to support NHS organisations in their responsibility to protect staff from unacceptable violence and abuse. In addition, we are bringing forward a plan that will pilot and evaluate the use of body-worn cameras by paramedics, who experience the worst of the violence and abuse, so that we can ensure that they have evidence for prosecutions that is sadly often lacking for convictions where they are appropriate.

[Baroness Jolly (LD)]

My Lords, as we have heard, levels of abuse and bullying are unacceptably high in the NHS, and whistleblowing is not a universally trusted or successful route to resolution. The Scottish Parliament is investigating using the Scottish Public Services Ombudsman to investigate unresolved NHS whistleblowing cases. Does the Minister consider the use of the English Parliamentary and Health Service Ombudsman a sensible route for English NHS whistleblowers? If not, what would she recommend for frustrated NHS whistleblowers?

[Baroness Blackwood of North Oxford]

I thank the noble Baroness for that proposal; I shall certainly look into it. A number of measures have been put in place to enable a safe space for whistleblowers to come forward, including a number of regulations ensuring that they are protected and that non-disclosure agreements do not inhibit them from coming forward, but I will certainly consider her proposal.

GP Services in Rural Areas

Baroness Jolly Excerpts

Tuesday 2nd July 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

The right reverend Prelate is quite right. We need to expand the wider workforce to support GPs. One reason this has been such a challenge is the shortage of the wider workforce. That is why there was a commitment in the people plan to recruit 20,000 extra staff—such as physiotherapists, pharmacists and nurses—for GP practices, to ensure that we can provide the support staff for sustainable community services. There is an emphasis on moving towards more community care. That is why the funding has been provided, and why there is such an emphasis on that part of the service.

[Baroness Jolly (LD)]

My Lords, I live in a very rural part of Cornwall. My GP practice is 18 miles away. It struggles to recruit GPs and then to keep them. The proportion of the English population who live in rural areas is 19%—the equivalent of the population of London. Can the Minister explain why very few NHS plans consider rurality, with its high levels of deprivation and loneliness and their associated diseases? Might that be one reason why GPs choose not to work there, or why they do not stay for long?

[Baroness Blackwood of North Oxford]

The noble Baroness is very lucky to live in such a beautiful part of the country, but she is right that rurality has a significant impact on health outcomes. It is considered as part of a number of plans. As for recruitment and retention, these have been part of the plans that the NHS has brought in, particularly for GPs. That is why we have had the recruitment and retention plan for hard-to-reach areas for GPs since 2016. We are evaluating that programme and are still considering it.

NHS Long-term Plan

Baroness Jolly Excerpts

Monday 1st July 2019 Lords Chamber

[Baroness Thornton (Lab)]

I thank the Minister for repeating the Statement and refer the House to my interests as listed in the register.

It is 71 years this week since the Labour Party created the NHS in 1948; it will also be a Labour Government who will turn around the NHS again, as we did from 1997. As the Minister will know, I welcome the things we agree on: alcohol care teams, perinatal mental health services, a greater focus on health inequalities and enabling gambling addiction services; all Labour ideas, of course. Even today the Minister—or rather, her right honourable friend—talked about bringing hospital catering in-house, which is another Labour idea.

The Minister has focused on three important matters in this Statement, but I have some questions about other matters that it contains. I want particularly to raise the question of support for local systems. Increasing the focus on population health in the long-term plan is of course very welcome. Can the Minister explain how STPs will become ICSs by April 2021, with all ICSs—I apologise to the House for using all these acronyms—reaching “mature” status, as described in the recently published ICS maturity matrix? Will the Minister also explain how the provider and commissioner landscape will develop, with a new integrated care provider contract due to be published this summer to provide guidance on how primary care can be integrated with secondary and community services?

The long-term plan rightly has prevention at its heart. Will the Minister set out how the Government will work with local authority partners to take forward prevention activities on obesity, smoking, alcohol, sexual health, antimicrobial resistance and air pollution, including how they will use the additional targeted funding being made available to support this series of activities?

At a time when life expectancy is stalling and infant mortality rates—the rate of children not making it to their first birthday—have risen three years in a row for the first time since World War II, vital public health services that tackle inequalities have been cut by £700 million. We all know that the NHS’s ability to plan for coming years is dependent upon a well-resourced adult social care system; of course, adult social care budgets have been cut by £7 billion. Also, we still await the social care Green paper. Will the arrival of a new Prime Minister hasten or further delay further its arrival? How can system-wide reform be delivered, as aspired to in the long-term plan, under these circumstances?

On staffing issues, we have 100,000 vacancies and are short of 40,000 nurses; at the same time, bursaries have been scrapped, CPD budgets cut and the no-deal Brexit we seem to be preparing for will exacerbate the staffing crisis. I noted and welcomed the interim NHS People Plan published by the noble Baroness, Lady Harding, but when will we see a workforce plan backed up by actual cash? It cannot be delivered unless this happens. The Government talk about IT systems but give no certainty on capital investment. Hospitals are facing £6 billion-worth of repairs, with walls crumbling, ceilings falling in, pipes bursting and outdated equipment stalling. Maintenance designated to address “serious risk” has doubled to £3 billion. Will this backlog also be tackled?

I turn briefly to mental health. We know that more than 100,000 children are denied mental health treatment each year because their problems are not judged “serious” enough. Over 500 children wait more than one year for specialist mental health treatment. When the Minister talks of a fundamental shift, does she mean that the Government will ring-fence funding? Given that just 1.6% of the public health budget is spent on mental health, will the Government insist that more is spent on mental health resilience and prevention?

Finally, I want to ask about next steps. It is my understanding from the Statement that a national implementation plan to be published by the end of the year will bring together the aggregated ICS/STP plans and national activities with performance trajectories and milestones to deliver the long-term plan commitments. However, it notes that the development of the national plan is contingent on the spending review, due to the need to account for decisions on workforce, social care, public health and capital budgets. Due to the uncertainty in the current political environment, will the spending review be delayed, and will that set back the development of the national plan beyond November?

The national plan states that the NHS needs to,

“remove the counterproductive effect that general competition rules and powers can have on the integration of NHS care”.

I say Amen to that. But are the Government now willing to admit that the Health and Social Care Act of the noble Lord, Lord Lansley, has had a devastating effect on the NHS? Will the Government bring forward primary legislation to achieve the objectives set out in the long-term plan?

[Baroness Jolly (LD)]

My Lords, I too thank the Minister for reading the Statement. I feel I should get out an orange flag—I am probably wearing the right colour—because, in the 1940s, Liberals were orange, not a yellowish colour. Beveridge, whose paper proposed the National Health Service, was indeed a Liberal and his proposal was for a service,

“free at the point of need”.

Anyway, I will get back to the Statement. I welcome the Secretary of State’s commitment to cancer and mental health services and workforce growth—who would not? But the Statement does not refer to the local five-year strategic plans to be completed by mid-November and rolled out thereafter. These will involve local consultation and incorporate performance trajectories and milestones across health and social care; they are truly the plans to implement the Secretary of State’s plan. The Statement mentions funding but is quiet about how much. I guess that is quite understandable given the position of the Government, who do not know who the new leader will be let alone his priorities.

The NHS is crying out for more capital: diagnostic and treatment equipment these days is big and very expensive; those of us who have been into English hospitals recently will notice that the buildings are looking sadder than they did 10, 15 or 20 years ago; and workforce shortages are mentioned. Will the Minister tell us when we can expect the NHS to be fully staffed and appropriately equipped? There is no mention of widespread regional variation in outcomes: by when will these be no more? Can the Minister explain how the areas for concentration will be managed? Will management be top-down or bottom-up, reflecting local needs?

Will the Minister also tell the House about any conversations regarding more funding for adult social care? I shall not say any more about the Green Paper. Public health services are critical to help people deal with obesity, stop smoking and become fit, so living longer, healthier lives. All these are critical matters for local authorities. The Statement barely mentions social care but, without an injection of staff and funding, it will fall, and with it the Secretary of State’s laudable visions for cancer treatment and mental health.

[Baroness Blackwood of North Oxford]

I thank the noble Baronesses for their contributions. I think the most helpful thing would be for me to talk a little about the next steps in the development of the local plans, which answer a lot of the points that have been raised.

A significant engagement exercise went into the development of the implementation framework as it stands. It identified a real desire to deliver on the total breadth of the long-term plan rather than to pick and choose, a request for systems to take into account local needs and the different starting points in order to deal with variability, and a request for help on sequencing: what they should prioritise and where they should start from.

The framework seeks to address these issues and asks the systems to develop the five-year plans, which they will implement over this period. It also sets out the approach to STPs and ICSs, which are asked to develop their strategic plans by November, covering the period from now until 2023. By the end of the year they will be aggregated as part of the national implementation plan. As has been noted, that will take into account the Government’s spending review decisions on workforce education training. Social care will be part of it, and it will also play into the upcoming publication of the prevention Green Paper and the social care Green Paper. Relevant decisions will also need to be made about public health and capital investment, as set out in the Statement.

There are key points that need to be taken into account. The NHS has been asked to ensure that these are clinically-led plans and that they are locally owned, so that communities can have meaningful input; that there is realistic workforce planning—the people plan will be part of that process; and that the plans are financially balanced, because that is the only way we can ensure genuine delivery of the long-term plan and that the concerns raised by both noble Baronesses are taken into account.

National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2019

Baroness Jolly Excerpts

Monday 10th June 2019 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I share some of the concerns expressed by the noble Baroness, Lady Thornton—she has dug out a few that I have not mentioned or even thought of. Many of us here will have had friends or family in receipt of this funding. My mother received it towards the end of her life. By way of clarification, can the Minister confirm whether FNC is funded in the same way as end-of-life care? If so, is there the same sort of uplift?

It would be good to look at this in the context of a Green Paper. I know that that is a dig and something that we say frequently, but so much of this would be much easier to debate in your Lordships’ House if we had a Green Paper to read and could try to understand the Government’s intentions.

These changes will impact on CCG funding with effect from 26 April, so the increase is not within the CCGs’ budget for this year. What will the extra cost be to CCGs? Is there likely to be an in-year top-up to cover it, however small?

The patients we are talking about will be resident in nursing homes. I wonder whether the sector was consulted about the changes. What was its reaction to LaingBuisson’s estimate of a 3.1% efficiency uplift? What was LaingBuisson’s rationale? If the Minister has that in her notes, I would be interested to know where the 3.1% came from. Why was it not 3%? I am sure that a lot of people would like to know that—not least the sector.

[Lord Taylor of Goss Moor (LD)]

If my noble friend will allow me, I would like to ask a question. Is it not the case that the people who work in this sector are, by and large, extraordinarily low-paid while caring for some of the neediest people in this country? The collapse of so many providers in the sector suggests there is something fundamentally wrong, to which efficiency savings do not seem a realistic response.

--- Later in debate ---

[Baroness Jolly]

My noble friend makes a very good point. The majority of people who work in the sector are care workers on the basic minimum wage, or something related to that. What we are discussing this evening is nursing care which will be paid at a union rate; nevertheless, it is stretching the sector.

The Minister knows about the shortage of nurses, and the noble Baroness, Lady Thornton, spoke about the shortage of care workers. Why do we have restrictions on agency nurses’ nursing hours of 10% of the total? Clearly, we cannot have agency nurses covering the whole thing; everyone across both health and social care frets about agency nursing and its expense over and above that of paying for directly employed people. But what is a nursing home to do if there are no salaried nurses available? Is the 10% smoothed over a month or a year? Is this realistic? How realistic is it for less than 10% of nursing hours to be delivered by the agency? This will be locally variable—relatively straightforward, perhaps, in city settings but where my noble friend and I live in Cornwall, people such as agency nurses are like hens’ teeth. This is not straightforward, and I am not convinced that it is absolutely workable.

This measure looks hurried, but I suppose any increase is welcome. I await the Minister’s response to some of the comments that I have made and those of the noble Baroness, Lady Thornton.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Blackwood of North Oxford) (Con)]

My Lords, I open with an apology for the state of my voice. I shall do my utmost to make myself heard and make it to the end of my speech. If I do not manage to answer all the points made, I shall write not only to the two noble Baronesses who have raised questions but to all those present in the debate, and will place a copy of that letter in the Library.

I would also like to identify myself with the points raised by the noble Baroness, Lady Thornton, regarding Carers Week, and to pay tribute to all those carers in this country who make tremendous sacrifices for those they care for. We should all thank them for the work they do. Our system would not cope without them; we should all be very grateful.

I turn to the questions that have been raised. NHS funded nursing care is of course an incredibly important part of the health and care system, supporting the provision of nursing care in nursing homes. The NHS funded nursing care rate plays the important role of ensuring that neither individuals nor local authorities have to pay for nursing care, which is the responsibility of the NHS. My department is seeking to ensure that nursing home providers are paid a fair rate for employing registered nurses, so that nursing care can be provided to all who need it. On the point that was just raised, it is helpful to know that the average pay for registered nurses in the independent sector has now risen from £23,400 to £29,400, so that is the benchmark we are talking about.

The noble Baroness, Lady Thornton, raised the issue of the nursing care rate for 2019-20, which my department set in regulations in April. This was done, as she said, following the LaingBuisson report into the costs of providing NHS funded nursing care to nursing home providers, after further consideration by my department. Following this work, the rate has increased by 4.7%, which is a significant increase above inflation, as has been recognised. The efficiency expectation, which is regretted in tonight’s Motion, should be seen in the context not only of this above-inflation increase but in the context of the significant increase of 40% which came in 2016-17; that is part of the picture that the efficiency expectation was put in place to address.

It is only right at a time of continued and much-needed investment into nursing home providers—ensuring they are able to employ and retain registered nurses—that the Government and the NHS also expect those providers to deliver as efficient a service as possible and value for money to the taxpayer. The 4.7% increase in the nursing care rate for 2019-20 is a far larger increase than that being seen in the vast majority of prices across the wider public sector and NHS; this is because of the priority that we have set on that rate. For example, the NHS national tariff is increasing the majority of prices in the NHS by 2.7% for 2019-20. The national tariff has also asked most NHS providers to make efficiencies of 3.1% across 2018-19 and 2019-20, and the Government believe that while still getting an above-inflation increase, nursing home providers should be able to do the same.

The LaingBuisson report provided evidence showing that many nursing home providers are already delivering nursing care more efficiently than others, so there is variability in the system. The study shows wide variation in the cost of delivering nursing care, even when factors such as region or provider size are taken into account. Efficient providers surveyed were shown to deliver an hour of NHS funded nursing care for 18% less than others. Additionally, the study showed that nursing home providers are increasing their use of agency nurses, as has been discussed. An hour of agency nursing costs 47% more to providers, and so, obviously, to the NHS. We believe that providers can work to reduce the proportion of their workload covered by agency nurses, as we have required other parts of the NHS to do, in a sustainable way.

There is a need to ensure value for money in important NHS services and to maintain their sustainability. The Government believe that efficiencies can be made in relation to the rate this year—for example, in the use of agency nurses. However, this is still within the context of a significant and above-inflation increase to the nursing care rate. That is why we think that the rate set is achievable.

The noble Baroness, Lady Thornton, also raised the important issue of the need for a long-term funding settlement for social care and financial sustainability for the sector, as she has on more than one occasion in this Chamber. The Government have already given councils access to around £10 billion of additional dedicated funding for social care over this spending review period. This includes a £240 million adult social care winter fund for 2018-19, and again for 2019-20, to help local authorities. It is the biggest injection of funding for winter pressures that councils have ever received. As a result of the measures the Government have taken, funding available for adult social care is increasing by 8% in real terms from 2015-16 to 2019-20. Councils have responded by increasing their spending on social care, so the money has gone where it was supposed to, which is always encouraging.

Local authorities were also able to increase the average fees paid for older people’s residential and nursing care by 6.4% in 2017-18, which we believe brought more stability to the market. When we look into the detail of the figures we see that, while there has been a reduction in the number of care homes, the overall number of social care beds has remained broadly constant over the last nine years, with an increase in nursing beds and care home agencies. As in any market, there will be inevitable entries and exits of care organisations, but we feel that there is some consistency. It is more reassuring than it may appear on the surface.

As we have also discussed, social care funding for future years will be settled in the spending review, where the overall approach to funding of local government will be considered in the round. We are also looking ahead to ensure that the social care system is sustainable in the longer term so that we can continue to deliver as our society ages. This is why the Government have committed to publishing a Green Paper at the earliest opportunity, setting out proposals for reform.

I hope I have answered the majority of the questions raised by the noble Baronesses. If I have failed to respond to anything, I hope they will allow me to write.

People with Learning Disabilities

Baroness Jolly Excerpts

Thursday 6th June 2019 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I declare my interest as the chair of the board of trustees for Hft, Home Farm Trust, a national charity that supports adults with learning disabilities. We support more than 2,500 adults in community settings across England. I was fascinated to listen to the noble Baroness, Lady Lane-Fox. We actually use modern technology: if one household wants to talk to another, they just touch the television in the corner, it all pops up and they have a chat, which brings them much closer. I would also like to talk to her outside the Chamber about research that might be going on.

My interest in learning disabilities goes back to 1997, when I was a non-exec director on the board of an NHS trust delivering services to adults with a learning disability, as well as other services including community services and mental health services. Non-execs were expected to visit settings where services were delivered, and I sincerely hope that that is the case right across the NHS now. On our way back from a meeting, a non-exec colleague and I decided to visit one of our hospital settings unannounced. What we found was not quality care: no one paid any attention to the environment, patients were strapped in chairs and the place did not feel right. People who go into hospitals will know whether one feels good or does not—it is in your water, if you like. There was a feeling of containment, not of care. We went straight back to the chief executive and played merry hell. That was more than 20 years ago, and things should have moved on.

I thank the noble Baroness, Lady Thornton, for tabling this debate, but we should not be having a debate at all. Budock in 2005, Winterbourne View in 2011, Calderstones in 2016 and now Whorlton Hall in 2019 each showed us scandalous and shameful treatment of adults with a learning disability living in a setting run by, or for, the NHS. Reports were written and inspection and improvement teams sent in, so what can the Minister say to the House by way of reassurance that in three, four or five years we will not see a repetition of these scandals? Can she tell us who has to put their foot down and where to enable the report Building the Right Support, which was written in 2015, to be implemented?

That report is where we can find the national service model. Services in the community have to be set up, and local authorities have to commission services. We have spoken about local authorities and commissioning. Sometimes local authority commissioning is unimaginative; sometimes it is just a case of an uplift, or of saying that it will take five hours a week to care for Mary Lou, John or James, without putting the individual at the centre of the care plan.

The LGA, ADASS and NHS England co-authored Building the Right Support. They said that before the end of 2018,

“we will take stock and look at going further”.

Can the Minister confirm that, six months on from that date, stock has indeed been taken and what “going further” means? Where have alternatives not been found, and by when will this be achieved?

Let us be clear about the scale of the issue. In April 2019, data from NHS Digital shows the continuing human rights scandal facing some of the most vulnerable in our society. At the end of March, there were 2,260 children and adults with a learning disability still being detained in in-patient units. That is 437 more than the minimum target set by the Government in October 2015 to move between 35% and 50% of people with a learning disability and/or autism out of institutions and into community-based support by the end of March 2019. The number of children has more than doubled to 240, and the biggest group of children—61%—is of girls with autism and no learning disability. I remind noble Lords that these children are detained. In one month, there were 2,605 uses of restrictive interventions—physical restraint—875 of which were against children. The average time in in-patient units, away from home, for people with a learning disability and/or autism is more than five years. Finally, 16% of people in an ATU have been there for more than 10 years.

As of a couple of weeks ago, another working group has been set up for learning disabilities and autism to fund specialist advocates to review the care of patients in segregation or long-term seclusion. That is welcome. The Secretary of State has promised to work with families, join up services and work to move people to the community where appropriate. That is welcome. But there are two areas still to be addressed: the first is money and the second is workforce. It costs quite a lot more to care for someone in the community, but that is the price society should pay for ensuring someone lives the most fulfilling life possible, with dignity. This care funding comes from local authorities, which, as I said earlier, are not all the most imaginative commissioners. They should be commissioning a care package according to what is in an individual’s care plan, but not all are. The Chancellor should acknowledge that and ensure that a realistic settlement is given to local authorities.

The failings in all the scandals I outlined earlier were human. Care workers and nurses were either ignoring any training they had received about care and compassion or were poorly trained, and certainly poorly managed and supervised. Supervisors and management either turned a blind eye, or were complicit. However, not all is doom and gloom. There are many outstanding and good learning disability services in communities. It is time we thought of care as a profession, and one that has robust registration, as in Wales, in which carers are valued and paid a reasonable wage, and in which there might even be some sort of professional progression. This will come at a cost. I hardly need to remind the Minister that we still want clarity, despite no Green Paper. Then, and only then, can we start to lay a foundation for quality care for some of the most vulnerable in our society.

Social Workers: Recruitment and Retention

Baroness Jolly Excerpts

Thursday 16th May 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

The noble and learned Baroness makes an excellent point. Social workers play a crucial role in our society and should have the respect and status they deserve. One way in which that can be achieved is through the increasing professional standards being brought into the service. As I have said, these include key reforms such as improving leadership and providing high-quality continuous professional development, through which we seek to improve the quality of social workers’ professional lives while raising standards and recognition for the profession.

[Baroness Jolly (LD)]

My Lords, the named social worker programme demonstrates a new way to support particularly vulnerable people. Social workers and their clients felt more confident and supported; social workers felt more job satisfaction, and we have just heard how important that is. What plans are there to expand this programme to more areas?

[Baroness Blackwood of North Oxford]

The noble Baroness is absolutely right: that is a vital part of the programme. It is part of a wider suite of programmes that have been introduced so that we can bring individuals into social work at different points within the system. This has included the new social work degree apprenticeship scheme and, as I have said, we have 4,000 a year entering the normal degree programme. We have also introduced the fast-track training programme for high-potential graduates and the Think Ahead graduate programme for mental health social work. We are trying to attack this challenge from all angles, as well as guaranteeing that we retain those in the system through continuous professional development. This will ensure that it is a rewarding profession, as she rightly says, but also one in which people feel supported and that they have the skills to deliver for the most vulnerable in our community.

Learning Disabilities Mortality Review

Baroness Jolly Excerpts

Wednesday 15th May 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

I thank the noble Baroness for her important questions. On her first point, which is that the Government have had the report since March, I should like to be very clear that this is not a government report; it is an independent report from the University of Bristol. It is free to publish it when it is ready, although it was commissioned by NHS England, so the Government are not in control of the timetable for publishing it.

The noble Baroness is 100% right, however, on her point about “do not resuscitate” orders. The reports that we have heard that disabilities such as Down’s syndrome are being used by some doctors as a reason not to resuscitate are entirely unacceptable. We are taking immediate action and a letter will be sent to health professionals to make clear that that is not an acceptable reason to put in place a “do not resuscitate” order. On her last point about resourcing and the effectiveness of the LeDeR programme, progress has been made in implementing it: 15 out of 24 of the recommendations have already been completed, and in others we are making real progress. NHS England has trained more than 2,100 experts to carry out reviews, 1,500 reviews have been completed and a further 1,500 are in progress, but I have no doubt that given the situation in which we find ourselves, questions will be taken into account by NHS England and the department.

[Baroness Jolly (LD)]

My Lords, I should declare my interests. I am chairman of Hft, a learning disability charity which cares for more than 2,000 adults. I thank the Minister for repeating the Statement and understand the limitation of her responses, but I am not sure that the Secretary of State’s words will console parents and other relatives of someone with a learning disability. If the Secretary of State were to take immediate action on any part of the leaked report, I should like it to be on the issue that the noble Baroness, Lady Thornton, just raised about “do not resuscitate” orders.

No one dies from a learning disability or Down’s syndrome. The reason for the annual report is to identify why people with learning disability die much earlier than the population average. Why and how well-trained doctors do not know and appreciate that appals me. Can the Minister put a note in the Secretary of State’s in-tray to suggest that this might be an area to look at urgently and remedy quickly? Can she ask him to ensure that all doctors in training learn to care for people with a learning disability, and that that is regularly refreshed as part of their ongoing professional development? Will she flag up to him that I look forward to discussing the report with him as soon as it is finally published?

[Baroness Blackwood of North Oxford]

The noble Baroness is absolutely right that this issue must be a top priority, and I assure her that the Secretary of State is taking it as such. I repeat that it is entirely inappropriate that disability of any kind—in particular, learning disability or Down’s syndrome—should ever be used as a reason for a DNR, and that NHS England will be writing to all doctors to remind them of this fact. It will be made absolutely clear.

The noble Baroness is right that there should be no reason for people with learning disability to have a different life expectancy. A commitment has already been made in the long-term plan to address those challenges, including increasing the uptake of annual GP health checks for people with learning disabilities to 75%, as it is recognised that physical care for those with learning disabilities is not as effective as it should be; creating a digital flag on patient records for all people with learning disabilities and autism by 2023; and reducing the number of in-patients with learning disabilities by half by 2024. We are increasing the pace with which we do that.

The noble Baroness’s last point, which is really important, concerns ensuring that all those working in the health system are trained to treat those with learning disabilities. A consultation on this matter has just closed and we will respond to that in the next two to three months.

Tessa Jowell Brain Cancer Mission

Baroness Jolly Excerpts

Monday 13th May 2019 Lords Chamber

[Baroness Thornton (Lab)]

My Lords, I thank the Minister for repeating the Statement. Of course, it is a matter close to the hearts of many noble Lords here, particularly those of us who took part in the debate when Tessa Jowell spoke in this House for the last time. Who could forget Tessa’s determination to fight for change, so that in the future people would not die of brain tumours but that research would lead to prevention, early detection and more effective cures, and that these would be available to everyone throughout the NHS, without being dependent on where you live? I pay tribute to Jess Mills, Tessa’s daughter, and her family for their continuing commitment to fulfilling the challenge that Tessa set all of us, as the noble Baroness quite rightly said.

We know that brain tumours are indiscriminate; they can affect anyone at any age. What is more, they kill more children and adults under the age of 40 than any other cancer, yet historically just 1% of the national spend on cancer research was allocated to this devastating disease. We all welcome the progress made so far by the Government; we congratulate them and support the fact that treatments are now available across the country that were not available when Tessa spoke to us in this House. However, we also know that the NHS faces a cancer diagnostics crisis. Cancer Research UK has pointed to chronic shortages in the diagnostic workforce, with more than one in 10 positions unfilled nationally. Hospitals are reliant on outdated equipment and some of the lowest numbers of MRI and CT scanners in the world. The UK is fourth from bottom in a league table of OECD countries with the lowest number of CT scanners per million inhabitants.

As the Minister rightly said, this is a question of both resourcing and staffing. In today’s Statement, we have been given sight of the key points that have been touched on and we are pleased that it references the upcoming workforce plan. However, it would be useful if she could expand on this point, specifically around the need for a global scientific workforce and the plans for immigration in relation to the research community. Because without the right skills and technical staff in place, a lot of the research funding and momentum achieved in the past year will not amount to very much. She will be aware that a mix of domestic and international scientific talent underpins the UK’s position as a world leader in life sciences. The 2018 immigration White Paper was not fit for purpose, in the view of those on this side of the House. The £30,000 a year salary threshold would have had a devastating impact on the recruitment of junior research capacity and the increased cost and bureaucracy requirements of the visa system. Indeed, the British public recognise the importance of an international research workforce to the UK. Ninety per cent of the public think scientists make a valuable contribution to society and 86% want to increase or maintain the level of immigration of scientists.

While I absolutely accept that progress is being made in the noble Baroness’s department, this question applies across government and I should like some reassurance that that is understood and action is being taken. Neurosurgery is no exception when it comes to the problems of cancer targets. In March 2019, the 18-week completion target for referral to treatment pathways stood at 81.3% for neurosurgery, 5% lower than the average for all specialties. This made neurosurgery the worst-performing specialty, almost certainly because of staffing shortages in these areas. Therefore, while I absolutely welcome the Statement and the progress being made, we all have to accept that we have some way still to go to fulfil the ambition and the targets that Tessa Jowell set us.

[Baroness Jolly (LD)]

My Lords, I thank the Minister for repeating the Statement. I had the honour of responding to Baroness Jowell’s maiden speech on 23 May 2016. I looked it up in Hansard this morning. She recalled Seamus Heaney’s injunction to his wife:

“‘Noli timere’—‘Do not be afraid’”.—[Official Report, 23/5/16; col. 167.]

As it turned out, we did not have long to wait for her to show how fearless she could be. I responded to her maiden speech by saying that I felt sure she would make her mark very soon. Sadly, she did not have as huge an amount of time to make her mark as I had expected—but nobody who was in the Chamber for her valedictory speech in January 2018 will ever forget her demonstration of total fearlessness.

5-ALA received FDA approval for use in the USA on 3 July 2017, just over a year after Baroness Jowell joined your Lordships’ House. Use in the UK was given NICE approval on 10 July 2018, just two months after she died. I clearly welcome today’s announcement, but I have some questions for the Minister about 5-ALA and its rollout. What weight does NICE give to treatments that have received approval by the FDA? Is it usual for a treatment that is so obviously effective to wait nearly a year before being used routinely? Will it be universally available to all those who stand to benefit from it?

[Baroness Blackwood of North Oxford]

I thank the noble Baronesses, Lady Thornton and Lady Jolly, for their very important and moving contributions to this debate. I will start by responding positively to the points made by the noble Baroness, Lady Thornton; of course she is right that maintaining a strong and vibrant life sciences ecosystem is absolutely a cross-government endeavour. She is also right that the mobility of scientists, from the technical and research level up to neuroscientists and neuro-oncologists, must be the business of the whole of government. We take that as a core aspect of the life sciences strategy and shall continue to do so.

Both noble Baronesses were absolutely right to say that workforce is key. As I said in the Statement, our upcoming NHS people plan and the cancer workforce strategy will ensure that there is a holistic plan to ensure that the technical workforce—including radiologists, as I already mentioned—is in place. HEE is also leading on specific work to ensure that we recruit and train an appropriate level of neuro-oncologists. This has been identified as necessary going forward.

To make sure that we make progress, we must go forward in four specific areas: research, early diagnosis, delivering on the long-term plan commitment to see 55,000 people a year surviving cancer for five years by 2028 and, as the noble Baroness, Lady Jolly, rightly pointed out, ensuring that when those people are diagnosed they have access to the best and most innovative treatments. That is exactly why we announced the boosting of the accelerated access collaborative—to ensure that we are identifying the best and most innovative treatments and getting them through the regulatory testing and uptake systems of the NHS much more effectively than before.

We have been putting in place a number of proposals to do this, and the mission has been playing an absolutely core strategic role in bringing together key individuals across government, the NHS, charities, industry and patients. I do not think that we could ever have imagined seeing such impressive progress. We can only thank it for that, particularly for the work it has been doing in research to develop the BRAIN-MATRIX trial. It is exceptional, and the mission should be given credit for that work. Through that research we will see earlier diagnosis and delivery of the commitments and targets that we have under the long-term plan to see more people diagnosed, treated effectively and surviving cancers.

National Institute for Health and Care Excellence (Miscellaneous Amendments) Regulations 2018

Baroness Jolly Excerpts

Wednesday 1st May 2019 Lords Chamber

[Lord Hunt of Kings Heath (Lab)]

My Lords, I am glad to lead a short debate about NICE and the introduction of charges. I was NICE’s first Minister and have long taken an interest in the work of the national institute. Overall, it has done a fantastic job; its methodology has been followed by many other countries and, clearly, it has had an impact on judgments about clinical and cost effectiveness.

However, its role has changed over the years. It was brought into being to encourage and speed up adoption of proven, innovative new medicines and treatments because of a concern at the time that the NHS was slow to adopt new treatments and innovations that had been shown to be better than existing treatments and drugs.

To start with, that worked. However, despite the legal requirement on the NHS to implement the technology appraisal decisions of NICE, right from the start it proved remarkably reluctant to do so. As time has gone on and money has been squeezed, NICE has become more a rationer of treatments than a pusher of the introduction of new, innovative products. My concern about charges is frankly not so much to do with the principle of charging, because it follows a well-known model and principle used throughout government endeavours, as with some specific issues, particularly in relation to small companies and the current or future review of NICE’s methodology, which I wanted to raise.

We know from the helpful paper produced by your Lordships’ Secondary Legislation Scrutiny Committee that the government grant to NICE has fallen from £66.4 million in 2013-14 to £51.2 million in 2018-19 and that the Government have argued that NICE needs to identify other sources of funding to enable it to continue its full programme of work.

Obviously, there was consultation. One issue raised in it was the impact of charging on the relationship between NICE and the pharmaceutical industry—but it is important that we recognise that NICE is concerned not just with medicines and the pharmaceutical industry. In the consultation, the potential for conflicts of interest and the public perception of such conflicts were identified as risks. In other words, because the pharmaceutical industry will now be paying for the work being done by NICE, will it have undue influence on the work of NICE? Looking at the robust approach of NICE, I think we can dismiss that fear, but it would be good if the Minister could say something on the record about how we can avoid any perceived conflict of interest.

The second issue I want to raise is the mechanism for reducing the impact on small companies. The original proposal was for a 25% discount but, as a result of concerns raised, the Government decided to provide a subsidy of 75% for small companies. That is welcome and I accept that the Government moved a long way, but the Ethical Medicines Industry Group, which represents a number of small pharmaceutical companies, says that despite that, there is concern among those companies about the impact on them when they have a number of other issues and challenges at the moment, including Brexit and the rebates associated with statutory and voluntary medicines pricing schemes. It thinks that the NICE charges still present a significant cost for small companies and asks the Government to consider whether further measures could be introduced to help mitigate the impact of this on SMEs. One of its suggestions is a fee exemption for companies bringing their first product to market. I think that is an interesting suggestion in terms of encouraging new entrants into the market, which I believe is government policy.

More generally, it is important that, with the extra resources that will be going to NICE, we take the opportunity to ensure that NICE modernises its approach to medicines assessment. When the Government introduced the concept of cost recovery they said the charging would provide a more sustainable model, enabling NICE to flex its capacity in response to the pipeline of technologies that require assessment by NICE. That is welcome, but I want to refer to a briefing I received from a company called AbbVie, which says that it is imperative that NICE fulfils this commitment to adapt and update its methodology and modernise its approach to assessing new technologies.

One example it gives is that we know that medicines are increasingly targeted at smaller patient populations developed through clinical trials. Inevitably, these will embrace patients in smaller numbers. The problem is that regulatory agencies tend to approach this with some caveats. Inevitably, the clinical trials result in smaller datasets and regulatory agencies are certainly demonstrating significant flexibility to approve such medicines, often conditional on that data. However, the approach of health technology assessment bodies such as NICE is often challenged by such datasets, resulting in delays and highlighting a disconnect in the medicines approval pathway. AbbVie-commissioned research shows that medicines, such as those specifically expedited through the regulatory approvals system, due to their addressing areas of high unmet medical need, take longer, on average, to receive subsequent approval from NICE than those medicines that have not been expedited, thereby making the whole process very difficult. The upcoming NICE methodology review, due to commence through 2019-20, provides an opportunity to look at this again and I would be grateful if the Minister would say one or two words about that.

I also raise an issue raised with me by Alexion, a company focused on the development of medicines for rare and ultra-rare diseases. It has concerns about the potential unintended consequences of introducing charges for appraisals without action to address the significant challenges these treatments face in NICE assessments.

In conclusion, I do not object to the principle of charges: I think it is quite proper and the Government’s approach is to be supported. I have concerns about the small companies. I know that the 75% rebate is generous on any count, but any additional costs on those companies is something to be concerned about. The core of my question to the Minister is around the methodology review, to ensure that NICE keeps up to date with developments in science and technology. That is very important.

Turning to my final point, I know that the noble Baroness has taken a great interest in this over the years, representing her old constituency, particularly the life science sector. On the one hand, government policy is about encouraging UK life science and biotech companies to develop, to innovate and to invest in the UK. However, the National Health Service is set up to ensure that those innovations are not adopted by it. Despite a number of welcome government initiatives, they are all what I would call upstream, because the downstream is too difficult. This is a real problem so long as we have an NHS dedicated to stopping innovation. I fear that, despite all the warm words from Ministers that we have heard over the years, the NHS response is to dampen down investment in these new technologies and medicines. My argument is that, post Brexit, we cannot afford for this to happen. One way or another, we have to find a way to get the early adoption of new medicines and new techniques, where they can be shown to do better than the existing ones, and NICE has to play a part in that.

This is really my usual rant about innovation and getting patients access to the fantastic things being developed in the UK. I look forward to the Minister’s response and I beg to move.

[Baroness Jolly (LD)]

My Lords, I thank the noble Lord, Lord Hunt of Kings Heath, for giving us the opportunity to ask the Minister some questions. As I expected, it was really interesting, starting with NICE from its inception. Those of us who have been involved with the NHS for some while know the standing that NICE has within the NHS community and how it is changing and adapting to changing circumstances, new technologies and the importance of really exciting new pharma, including pharma for specialised conditions. It also gives us the opportunity to better understand the motivations and reasons behind some of the changes.

As I see it, this SI does two things. It enables NICE to recruit experts from across the UK to its appeal panel, as opposed to individuals only in England. This aspect of the SI appears to represent a sensible change. Secondly, it will allow NICE to charge industry for the cost of making technology appraisals—TAs—and highly specialised technology, or HST, recommendations. I see this aspect of the SI as potentially contentious. How will the anticipated savings from the SI be used? To whom will they be allocated? Will they be used to support growth of the life sciences sector in the UK, or will they just become part of the income stream and then go some way towards the possible privatisation of NICE? Is not the reason for this SI that NICE’s government-funded budget is decreasing? The documents with this SI note that in 2013-14 NICE received £66.4 million in government funding, and that by 2018-19 this had dropped to £51.2 million. I wonder how many other NHS-funded organisations have faced cuts of 23% over five years and quite considerable growth in their business.