Health and Social Care

Baroness Finlay of Llandaff Excerpts

Thursday 12th October 2017 Lords Chamber

[Lord O'Shaughnessy]

There has been a 20-year search for a solution to this problem. It was not me who said that; it was the chief inspector of hospitals, who said:

“I think the one thing I regret is that 15 or 20 years ago when we could see the change in the population the NHS did not change its model of care”.


This is something we have all grappled with, but we have not yet come up with the solution that we need. That is why, through this consultation, we will be looking not just at finance but at quality of care, variation and sustainable staffing to rebuild the consensus that we need to move forward.

[Baroness Finlay of Llandaff (CB)]

Given that the report has pointed out that staff resilience is not inexhaustible and that services are at breaking point, do the Government recognise the enormous contribution of voluntary sector providers, particularly—I declare my interest in the area—in palliative and end-of-life care and hospice services, which are maintaining patients in the community and taking a great deal of pressure off statutory services? Are the Government giving any consideration to a national funding formula, such as I propose in my Access to Palliative Care Bill, which has had its First Reading?

[Lord O'Shaughnessy]

I join the noble Baroness in paying tribute to voluntary sector providers and volunteers, whether family members or others, who support care throughout the NHS and social care. There need to be more paid staff to meet the needs of our growing and ageing population, which is why the Secretary of State announced a 25% increase in the number of training places and more nursing associates. That is being put in place to make sure that the system, which is described in the report as stretched, has the capacity it needs to meet patients’ needs.

National Health Service (Mandate Requirements) Regulations 2017

Baroness Finlay of Llandaff Excerpts

Wednesday 6th September 2017 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare all my interests as a clinician. I worry that, if we keep on changing the way that we collect data, we have no way of monitoring what is happening. One thing about the figures as they are at the moment is that they are monitoring process. In addition to that, there must also be monitoring of outcomes—both clinical outcomes and outcomes in terms of the patient experience.

I worry that, if we start saying that the demography has changed and we have an elderly population, it makes it sound as if we are blaming people for living well and living longer, which we must not do. Actually, if people remain well, they are not a drain on the NHS at all. One of the most important predictors of poor outcomes is loneliness. If we have a population of people who are kept relatively well and mobile, they look after each other in communities. Good work on compassionate communities is happening around the UK already.

When we look at this question of targets and what the Government are doing, a worrying message is being sent. The Royal College of Emergency Medicine contacted me yesterday because its members are worried that they will not be able to cope with winter pressures. They are going into the winter with absolutely no wiggle room at all. They are at capacity. There has also been a change in the way that people behave. For an urgent appointment, they go through A&E, so the number of emergency department attendances has gone up as well.

In that group are those people who have been waiting for a time and during that time they have deteriorated. As they have deteriorated, something else has happened and they collapse—a bit like a stack of cards. Multiple problems arise and then those become more complex for the NHS. So it is not as if people are stable during their 18-week wait. If they have a disease that is progressing, they may well be deteriorating. Even worse for them, if the diagnosis in the original referral was wrong, they may need a complete review of their diagnosis. So simply talking about treating them is not correct.

My other concern is this: at what point does the clock start ticking? In some clinical commissioning groups, we are seeing groups being set up to look at the so-called appropriateness of the referral on paper. As a clinician, that worries me greatly, because I do not see how one can assess on paper. I know from many years of looking at referrals coming through on paper that they are only a very rough guide. Too often, I might see a referral that does not sound urgent and the patient in front of me should have been seen yesterday. Another one might sound urgent but actually is not. There is a real worry that, if we fiddle around with when the clock starts to tick, some people who really need to be seen urgently will be in a no-man’s zone before they are even properly referred because there have been delays. We hear about delays in access to primary care as well. The delay in being seen by a GP must be added on to any delays in being referred.

We also need to remember that, when we talk about 10 years ago, medicine has changed enormously. There are a large number of procedures now that, if they are done early, can be done in out-patients or as day cases. The days of needing to be admitted are not there, so that is all the more reason why we should be able to get more patients through more quickly if they are seen earlier.

I have a real worry that, as has been expressed very well by the noble Baroness, Lady Thornton, this flies in the face of reassurances that we were given during the passage of the Health and Social Care Bill through this House. Also, this sends a message to the service out there that, actually, we cannot cope. I worry that it will also disincentivise finding ways of treating people more speedily—as day cases and so forth—which could, with a little more investment, help to address the problem.

[Lord Beecham (Lab)]

My Lords, the impact of the cuts which are being debated tonight—and here I congratulate my noble friend on bringing forward his Motion—are not confined to the health service. They also stretch to social services departments and social care. The most rewarding period of my fairly lengthy political life was as the chairman of social services in Newcastle from 1973 to 1977 when we transformed social care in that city. Much of what we did in those days is now being undone as the result of pressures on the social care budget and a lack of adequate funding for the problems which many of us are becoming increasingly familiar with. What are the Government going to do about that impact of the decision, as it would appear to be, not to adhere to the 18-week period? What estimate have they made, if any, of the impact on social services and social care in a climate where local government budgets are extremely hard pressed? The two things are inseparable. It was a Health and Social Care Bill, now an Act, and we need to look at the social care implications of this extended period because, undoubtedly, it will put increasingly impossible pressure on local authority social services departments and other organisations involved in supporting people in the community.

End of Life Care

Baroness Finlay of Llandaff Excerpts

Tuesday 5th September 2017 Lords Chamber

[Lord O'Shaughnessy]

I thank the noble Baroness for raising this very important issue. On the tool and the cost effectiveness, we know how important it is to invest in these services. What we have now is not by any means a perfect service, but we do have the first national framework, NICE guidance and the CQC inspecting the quality of end-of-life care and showing up where there are still issues in provision. That is why we are working with Together for Short Lives and I think that the tool the noble Baroness has highlighted will help make the case to providers in order to do that.

There is significant funding going in from clinical commissioning groups and also what is called a care currency—a way of looking at that spending and making sure that it is being distributed to provide the care that is needed in a way that is predictable for the providers. In addition, another £11 million goes in from NHS England to support it. So there is always more to do but I think we are making good progress.

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare my interests, both as having established integrated paediatric palliative care services in Wales and as vice-president of Hospice UK. Does the evaluation that the Government have asked for from Together for Short Lives include evaluation of the experience of the family, including siblings, of the care? Are they able to access what they need when they need it, particularly on a 24/7 basis when the child is at home and crises may arise out of hours, to ensure that unnecessary and inappropriate emergency admissions are not happening because a family does not know what else to call for? Does the family feel supported—there is evidence of better long-term outcomes, both in the bereaved parents and in bereaved children?

[Lord O'Shaughnessy]

The noble Baroness is a true expert on this topic and we had a very good debate on the subject, which she initiated, in March this year. In terms of the experience of care, I will check exactly what the charity is looking at. I know that there is now a measure—a questionnaire—of maternity bereavement which is looking at the experience of care and trying to learn from that, and I will see whether that is more broadly the case in terms of siblings and others, and indeed for non-neonatal child deaths. On 24/7 provision, again, we know that it is not yet universal but a couple of pilots are taking place on 24/7 nursing community care, so we are making some progress on that. Indeed, one of the metrics by which we will measure our success is the number of admissions and the time spent in hospital in the final 30 days of life, which speaks to the point she was making in trying to keep those who are dying out of hospital if that is not where they want to be.

Health Service Medical Supplies (Costs) Bill

Baroness Finlay of Llandaff Excerpts

Wednesday 5th April 2017 Lords Chamber

[Lord Lansley]

I am perfectly happy if the Minister wants to reply but, from my point of view, I do not regard the PPRS as state aid. If R&D tax credits are available, they should be made available. When the Office of Fair Trading reviewed the PPRS back in 2008-09, I think, it concluded that it was neither a state aid nor a spur to innovation but was actually all about managing the drugs budget. That is what this legislation is all about: managing the drugs budget.

It is, however, important to recognise that the statutory duties in Lords Amendment 3 do not include the one which the Secretary of State should have specific regard to: affordability. It is deficient in not providing for that. Noble Lords will recall that, at an earlier stage, I tabled an amendment the purpose of which was to insert a more complete set of statutory duties for the Secretary of State to have regard to. Affordability must form part of that, but it is not present in this amendment. I am therefore against the amendment.

In the course of this legislation we have discussed other important issues which are still coming to a head. It is absolutely right, as my noble friend said, that the Government are setting out to promote innovation and the life sciences sector, and there are many ways of doing that. The Conservative Party manifesto of 2015 stated:

“We will increase the use of cost-effective new medicines and technologies”.


It also stated:

“We will speed up your access to new medicines”.


It is important that we do that as it is in the interests of patients, our life sciences industry and ourselves as a world leader in science in this area. However, we have on the stocks the accelerated access review—which, ironically, took too long to be produced, was delayed in its publication and has not yet been replied to. We also have a life sciences strategy. The many positives in that run the risk of being negated by the way in which NHS England and NICE have gone about the consultation.

As I said at an earlier stage, it is possible to see how NICE and NHS England can work together in ways that would give industry greater confidence as it would mean that it could get early engagement with NHS England about the managed entry of new medicines into the NHS, including, as my noble friend said, on issues of importance to industry, such as the volume of purchasing of new medicines in the early stages of access. However, the budget impact test, at £20 million, is probably not one-fifth of all new medicines; it is one-fifth of all new medicines regarded as cost effective by NICE. Therefore, this is not a case of any old medicine that might be very expensive; it just happens to be medicines which are cost effective but have relatively high volumes, which is exactly the point to which the noble Baroness, Lady Walmsley, referred.

However, the issue for NHS England should not be the cost of introducing new medicines that are cost effective and in the voluntary PPRS, as the purpose of the pharmaceutical price regulation scheme, as currently designed, is—through the clawback—to give government assurance about the overall increase in the drugs budget. As a consequence, that money is made available as part of the overall funding provided to NHS England. Therefore, NHS England should in theory have in its budget the money that is necessary to meet the drugs bill, including new medicines as they come on stream, because there is clawback for that.

We have this Bill in front of us partly, but not entirely, because the drugs budget was rising much faster than anticipated, and much of that growth was outside the voluntary PPRS. This Bill plugs that gap and sorts that out. However, in doing so—and here we are at the beginning of April—once this Bill is on the stocks and secures Royal Assent and the Secretary of State is able to align the statutory PPRS with the voluntary PPRS, there is no reason why NICE and NHS England should continue to apply an overall budgetary impact test. I say to my noble friend that I think the Government should step in at that point and say, “Where this product has come through a PPRS where a clawback is applied and we have a budgetary mechanism in place—redress—for any extra cost to the drugs bill in the course of this PPRS through to the end of 2018, NHS England should not interpose any extra delay, or seek any extra delay, through NICE in introducing that medicine to the NHS”. I am afraid that if it continues to do so in the way that it is at the moment, that will have a severe negative impact on the view held by the boards of major corporations in relation to the take-up of new medicines by the NHS.

I am sorry to say to the noble Lord, Lord Warner, and other noble Lords that the remedy is not contained in this amendment. The remedy is in the Government’s hands if they choose to make that point very clearly to NHS England in relation to what this legislation enables us to achieve in controlling the drugs budget.

[Baroness Finlay of Llandaff (CB)]

My Lords, I thank the Minister for the way in which he has conducted all the previous stages of the Bill, the amount of discussion and negotiation that he has had with all of us, and for accepting many of the amendments. It might be helpful to the House, if, when he sums up, he could clarify how much of the 7% increase is due to new NICE-approved drugs coming through into the system.

It would also be helpful to know whether NICE has the ability to refuse to go along with the budget impact test on this estimated one-fifth of medication that it deems to be cost effective if it feels that a new medicine coming on line is extremely cost effective and that its cost efficacy will have a major impact on those with life-limiting or life-altering conditions. I am talking about people with a disease that will progress at quite a rate, meaning that over a 90-day period they will be likely to experience a significant decline without the intervention of whatever the new medication might be.

It would also be helpful if the Minister could tell us how the independence of NICE will be assured with this budget impact test. In many parts of the world NICE has been viewed as exemplary in deciding how a medication is approved to come on line, but there are problems with it. If it were viewed as having its independence eroded, that would seriously undermine public confidence in the whole process, particularly among those who have serious and life-limiting or life-altering illnesses.

[Baroness Masham of Ilton (CB)]

My Lords, I am all in favour of bringing down the price of drugs where possible, but patients’ access to new drugs is very important. For a long time, NICE has been very slow to approve drugs and that has caused great frustration for patients and the industry. What can the Minister do about orphan drugs? Not having them can be life-threatening for patients, but NICE has taken some of these drugs off the list. That is really serious for patients for whom they are a lifeline. Does Scotland not have a better system?

End of Life Care

Baroness Finlay of Llandaff Excerpts

Tuesday 14th March 2017 Lords Chamber

Asked by

[Baroness Finlay of Llandaff]

To ask Her Majesty’s Government how they intend to ensure that Clinical Commissioners respect the undertakings made in Our Commitments to You for End of Life Care: The Government Response to the Review of Choice in End of Life Care.

[Baroness Finlay of Llandaff (CB)]

My Lords, I thank the Government for having provided time for this important debate and declare my interests in palliative medicine, particularly as national clinical lead for Wales from 2008, chair of the National Council for Palliative Care and a vice-president of Marie Curie.

Cicely Saunders founded the modern hospice movement 50 years ago, with activity underpinned by evidence. It was she who said:

“You matter because you are you, and you matter to the last moment of your life. We will do all we can to help you, not only to die peacefully but to live until you die”.


That scientific evidence has shown that morphine, given regularly at the right dose at the right time, can safely get on top of pain. Sometimes, other effective interventions, ranging from expert use of modern sophisticated analgesics to nerve blocks, are needed. Acute breathlessness and acute anxiety can now be managed. Open, calm and honest conversations with patients about their illness, their needs and what lies ahead can transform their experience as death approaches.

Care of the family, including children deeply affected by a person’s death, is core to good person-centred care. It means thinking ahead, planning for “just in case” rather than simply responding. Those facing the uncertainty of life-threatening illness must not feel abandoned, must know that continuity of care at all times will meet their needs, and that unexpected crises will be responded to urgently. Disease does not respect the clock nor the calendar. Help and support must be available whenever and wherever people need them.

I have had thousands of difficult, honest conversations with patients, listened to the grief and pain of parting, to fears and to deep, unresolved guilt. I have seen how those in despair can live well again with appropriate care, often amazed at finding meaning again in their lives when they had given up all hope.

However, it is not easy. Palliative care is not like taking a course of antibiotics that either works or does not. It requires constant review, carefully helping people as they adapt to their new reality. It means “being there”, and patients knowing that help is there for them at home and not just being rushed to A&E.

Relatives who have experienced gentle dying are not usually moved to tell the world of their reassuring experience, but a small number of bad deaths make headlines. Media coverage dramatises difficult situations as “human interest” stories. They sell papers, but they also paint a misleading picture of death and dying normally. Bad care should never happen. The failures identified in the ombudsman’s 2015 report will be addressed only by adequate service provision, tasked with driving up improvements everywhere.

Palliative care has gradually become mainstreamed. In 2008, the Department of Health’s End of Life Care Strategy set England’s plan to improve end-of-life care. A similar planning group, led by Viv Sugar, set out Welsh goals for palliative care services. This created a natural experiment.

In Wales, an investment of £6 million per annum recurring allowed a funding formula to be developed that targeted services to plug gaps and ensure fair access to specialist palliative care wherever a person lived. It has provided face-to-face specialist palliative care across seven days a week and consultant advice to all health and social care professionals on a 24/7 basis. Services into hospitals are proportionate to the number of beds and, across the community, proportionate to the population size. Recent outcome evaluations in Welsh hospitals suggest that this is bearing fruit and that communication is better managed. Pain is being managed. In the last five years, more than 8,000 patient and family evaluations have shown outstanding ratings of their specialist palliative care experience overall. The average is high.

In any one year, 0.75% of the population overall will have palliative care needs. Death is ubiquitous and inevitable. In 2015, almost half a million people died in England and more than 33,000 in Wales.

Reports since 2008 include the NICE quality standards, an independent funding review and One Chance to Get It Right. Then in 2015 a collaborative of providers published six high-level goals in Ambitions for Palliative and End of Life Care. In 2015 Claire Henry, commissioned by the Government, published What’s Important to Me—A Review of Choice in End of Life Care. People have clearly stated that they want the right care, at the right time, from high-quality, well-trained staff. They want honest conversations, not unrealistic expectations. They know that disease does not respect the clock or the calendar. People want to be involved in discussions about their care; they want to make sure that staff know their wishes and that all needs—physical, emotional, social and spiritual—are addressed. People facing dying want to know that their families are supported and involved.

The Government’s response last year addressed much of the report, showing synergy with the main themes of both the choice review and the ambitions framework. However, the review called for an investment of £130 million. The Government declined, stating instead that end-of-life care was to become a core priority within the NHS transformation programmes:

“Improvements to end of life care should not occur in isolation. They should be threaded through the most effective New Models of Care that will deliver the new, transformed NHS. Sustainability and Transformation Plans (STPs) should fully take into account the contribution that sustainable, efficiently designed end of life care services can make to achieving better outcomes for dying people”.


I was unconvinced that this was happening, so in 2015 my researcher and I analysed responses from all 209 clinical commissioning groups to a freedom of information request about their specialist and other palliative care services. We found wide variations across England in the core data that they collect and a disparity in the responsibility of service provision between clinical commissioning groups, trusts and local voluntary sector hospices. The decision-making devolved down to clinical commissioning groups suggests that palliative care is not being considered as a core service in some parts of England, despite much evidence of its cost-efficacy.

Two important randomised controlled studies of specialist palliative care input have shown that patients have a higher quality of life and better moods. Not only do they live better, but they also, surprisingly, live longer with good palliative care support, at no additional overall cost. Good palliative care saves money.

The Government’s vision in 2009 created Dying Matters to empower people to talk, live and plan. A national conversation started with a focus on wills, how to get help, and how to ensure that someone can speak up for you if you cannot. Compassionate communities are growing, encouraging people to look out for each other, do what they can, and not shy away from those who are ill or bereaved.

But then came the sustainability and transformation plans. Preliminary analysis looks grim: they do not reflect the Government’s stated intention. Almost half make no mention of end-of-life care at all, or only transiently, and only six of the 44 STPs actually embed end-of-life care as a strategic priority.

Public Health England has just published guidance on Cost-effective Commissioning of End of Life Care. It is a worthy review, but it does not provide a clear template to plug gaps. The Government’s commitment of last July was that,

“every person nearing the end of their life should receive attentive, high quality, compassionate care, so that their pain is eased, their spirits lifted and their wishes for their closing weeks, days and hours are respected”.

However, gaps remain. Today’s King’s Fund report shows the impacts of financial constraints on patient care, particularly in the community. So I respectfully ask the Government whether they will now look again at a framework funding formula that works in conjunction with voluntary sector providers—who do so much—to make sure people everywhere can access the care they need rather than depend on the lottery of commissioners’ views.

Health: Neurological Services

Baroness Finlay of Llandaff Excerpts

Tuesday 31st January 2017 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

My Lords, I congratulate the noble Baroness, Lady Gale, on her ongoing and persistent work on behalf of neurological patients. Up to a fifth of acute medical admissions are neurological problems. The second national survey of acute neurological services is about to be published and despite indications of some improvement in the past two years, we still lag way behind Europe and the US overall. With around a sixth of the neurological workforce of Europe the NHS cannot cope, let alone deliver optimum care. The hospitals surveyed reported limited access to neurologists overall. The 28 neuroscience centres have seven-day consultations, but over a quarter of general hospitals have a neurologist on for only three or fewer days a week, while a fifth of clinical commissioning groups offer no neurological services at all—yet accurate diagnosis is key.

Neurology input leads to a revised diagnosis and new management plan in 79% of patients—that is, four in five. Time matters: neurological emergencies can become permanent disability in minutes or signal a devastating progressive diagnosis. Open conversations must start early. As disease advances, specialist palliative care can dramatically improve quality of life and ensure a calm and dignified death. With specialist planning, and I declare my interests, those deciding to stop interventions such as ventilation have breathlessness and distress controlled. They are not left gasping and choking, as the press horror stories portray. Everyone with advancing neurological disease should be offered access to specialist palliative care; currently, only a minority are.

The Association of British Neurologists is working closely with NHS England, through Professor Adrian Williams, but there is only so much that they can do. Will the Government now establish a national strategy for acute and chronic neurological services to address the variations in care, and will they ask Health Education England to increase training opportunities in neurology and in specialist palliative care?

Sustainability and Transformation Plans

Baroness Finlay of Llandaff Excerpts

Thursday 26th January 2017 Lords Chamber

[Lord O'Shaughnessy]

On public scrutiny, all the sustainability and transformation plans have had public involvement. They were published and consulted on. I do not recognise the picture that the noble Baroness paints in relation to cancer drugs. This Government created the cancer drugs fund in order specifically to fund innovative cancer drugs and bring them to market more quickly. She will know that decisions on availability and funding of drugs are properly taken by NICE on a clinical basis.

[Baroness Finlay of Llandaff (CB)]

In July last year, the Government’s response to the national end-of-life choice offer was that end-of-life care would be part of all transformation programmes, yet 20 of the plans make fleeting or no reference whatever to end-of-life care and only six have clearly stated plans. That is despite approximately a quarter of a million patients dying each year in hospital. While some cases are acute, a large number of patients have a period where they need their care improved. What action are the Government taking?

[Lord O'Shaughnessy]

I thank the noble Baroness for making that point. The purpose of NHS England’s review of the STPs is to make sure that they account for all the priorities set out in the Five Year Forward View. Clearly, that involves end-of-life care, and NHS England will work hard to make sure that it is properly reflected.

Health Service Medical Supplies (Costs) Bill

Baroness Finlay of Llandaff Excerpts

Committee: 2nd sitting (Hansard): House of Lords
Wednesday 25th January 2017 Grand Committee

[Baroness Finlay of Llandaff (CB)]

My Lords, I have some sympathy with the amendment of the noble Lord, Lord Warner. It strikes me that the information being asked for in the Bill requires a degree of detail that probably is not going to reflect reality. This is very often a global industry, so defining a “UK producer” will be quite difficult. If we make the information requirements too difficult, I see a risk of some of the larger companies deciding to produce more offshore rather than here.

The other difficulty with the pricing of any medical treatment that comes to market is that it has often had a very long lead time—over years. So the true cost of that particular item becomes almost impossible to disaggregate from all the other costs. Then, once it is produced and packaged, there are distribution costs, the mark-up at wholesale level and so on. I can see how a producer, in wanting to keep a cost high, could potentially move around its budgeting line to protect itself. But the problem is that if you do not have a trigger, you may get so much data that you cannot actually extract the true knowledge and the important information from them. I understand why you would want to have a lot of data to be able to move the cost and map it efficiently, but there is only any point in mapping it if it has accuracy attached to it.

I have a question for the Minister. In all these information requirements, how will a “UK producer” be defined, as distinct from an international producer from elsewhere? I may have missed it, but I could not find it defined in the Bill; I can see only products defined.

It will become almost impossible to know where the true cost is, but if a cost is going up, that becomes counterintuitive. Generally, for medication that is out there on the market, the cost should fall. Usually, production costs drop, because, for example, antibiotic production used to be incredibly expensive and is now very much cheaper because of efficiencies and the way that the science has moved forward. So you would expect, with bulk sales and technological advances, that the cost should come down. I therefore have a question for the noble Lord, Lord Warner, on the trigger mechanism. Is his price absolute—in pounds—or is it also considered relative to other products in that field that may be on the market? For example, we have seen some major discrepancies with ophthalmic products. Eye drops for glaucoma have been incredibly expensive compared to exactly the same substance that is being used in oncology and has been priced at a much lower rate. The question has to come up as to whether the price is being held and maintained inappropriately, rather than having gone up.

[Lord Warner]

In response to the noble Baroness’s point, I would not claim to have actually considered the detail of what level of pricing we will use. My point in this amendment is to try to establish the principle of a trigger mechanism, and I am happy to be advised on ways of improving it.

Health Service Medical Supplies (Costs) Bill

Baroness Finlay of Llandaff Excerpts

Committee: 1st sitting (Hansard): House of Lords
Monday 23rd January 2017 Grand Committee

Controlling the cost of drugs and trying to ensure that new drugs are available to patients is obviously key. However, we are still in a situation in which there is a vast degree of overprescribing. We still face the serious challenge of antibiotics being overprescribed. I would welcome, in the Minister’s response, an assurance that, in the round, some of these issues are going to be addressed. It seems that they are all a key part of solving the problem and ensuring that we have an effective drugs policy inside the NHS that is doing two things: encouraging the innovation of new drugs within British companies and ensuring the effective use of these drugs. There is such variation across different trusts, so looking at best practice and where we are getting good value for money is also a key part of the equation. I hope that these points have been of some value.

[Baroness Finlay of Llandaff (CB)]

My Lords, I support this amendment. I have a real concern that the whole process of pricing and costing of drugs is very poorly understood. I was lucky enough to hear a lecture at the weekend by Jack Scannell, an economist who understands quite a lot about drug pricing. He pointed out that there are four reasons why drugs are expensive: one is cost; one is perceived value; another is power; and the fourth is the prize that they can deliver. It is all in a paper that he wrote about the four reasons why drugs are expensive, two of which he labelled as false: the cost and the so-called value. The reason is that a company will start to explore different chemical substances that might have an effect; 90% of these never progress but remain in various test tubes and are stored. One day they might be of use.

The problem then is that, even if they develop something and take it through the different trials, there are fairly arbitrary examples of where the benchmark is set in different sectors. A clear example of this came up with the drug Campath, which came from Cambridge. It was developed for leukaemia, but was found to be remarkably effective for multiple sclerosis. The drug company then withdrew the drug because it was being prescribed off-licence: it was not licensed for multiple sclerosis. It took the trials through, licensed it for multiple sclerosis under a new name—Lemtrada—and the price was much higher because the benchmark of prices for multiple sclerosis was much higher than that for drugs for leukaemia. The chemical was the same. Actually, when a drug goes out and is priced, it really is, in a way, a guess on behalf of the pharmaceutical industry at the outset.

Another problem arises that relates to the importance of having trials in this country. Trials have to be done on the population to which the drugs are going to apply. It is quite interesting that with different healthcare systems, clinicians see patients at different stages of disease, so with a late diagnosis, you might have a much larger disease burden requiring treatment than you would have had if there had been an earlier diagnosis.

If the trials are conducted in this country, therefore, within the NHS and the real care system—the real world in which these drugs are going to be used—and as near as possible on the very population on which they are going to be used, you get the most accurate results. They can guide NICE in determining how effective a drug really is.

If you have a study on a population with a very early diagnosis, and therefore a relatively low disease burden, you might get a false impression of efficacy, which could lead NICE to believe that the drug was being actually more effective than it will turn out to be in our population. The converse is also true.

That leads me to stress the importance of supporting a flourishing life sciences sector, because we need to be developing drugs in this country, within the care setting in which they will be prescribed and for the population to whom they will be supplied. Any attempt at pricing must, importantly, not disincentivise the pharmaceutical industry to develop the 90% of drugs that go nowhere to find the 10% that will go somewhere.

I hope that the Government will take the new clause very seriously, because it signals an important intention up front in the Bill.

[Baroness Redfern (Con)]

My Lords, I declare my interests as recorded in the register and formally welcome my noble friend Lord O’Shaughnessy as the Minister this afternoon. Although the Bill is modest in size and has few clauses, it will deliver an important role in securing better value for money not only for the NHS but for patients.

Pressures on the NHS increase year on year because of our ageing population, new technology, and development of new procedures with advanced drugs, resulting in an increase in spending over the past five years of 20%. We spend more than £15 billion a year on pharmaceutical products, and we are acknowledged by those companies to be a reference market for many other countries that do not have such a large or well-organised supply chain as we do.

Patients request access to innovative and cost-effective medicines, so the Bill delivers value for money and does not support the drug companies, which have a commanding monopoly position, to push up their prices. I am pleased to see a strengthening of the ability to collect data on the cost of medicines, medical supplies and other related products from across the supply chain, which the Bill would amend by extending the provisions of the 2016 Act.

The statutory scheme has delivered significantly lower than expected savings for the NHS, with concern as to whether competition in the market is sufficient to control prices, so with new powers to be established under the Bill, there will be opportunities for more competition for unbranded generic medicines and to apply price controls for companies that are members of the PPRS. Particularly when companies can charge unreasonably high prices for unbranded generic medicines when competition does not keep the prices down, the Bill closes a current loophole in the legislative framework.

Clause 6 requires information from more producers and companies but, importantly, any information that they supply which may be commercially sensitive cannot be disseminated beyond the prescribed bodies. We may therefore be better informed on a more consistent basis, particularly to assess whether the supply chain as a whole or a specific sector provides value for money for the NHS. The world is changing, and personalised medicine is an important development for us all—but, again, it needs to be delivered both effectively and affordably.

At all times, we must make sure that the UK is seen as an attractive place for the life science sector—research being seen as a vital component in the sustainability of the NHS, as we have heard from previous speakers. To balance the control of the price of medicines and innovation for pharmaceutical companies, there should not be a lack of motivation to invest in the extensive R&D that we all want. In order to stimulate continued investment, it is appropriate for the industry to see a stable marketplace here as significant and important.

If we are to create a level playing field for drug companies, should we not be trying to do the same for patients? I therefore ask my noble friend whether one measure to tackle the issue could be ring-fencing possible rebates or a percentage from the sector to invest in improving access to medicines and treatments—particularly when we read that a fifth of new drugs face rationing under tighter NHS cost-cutting plans. With a budget impact threshold, that has the potential to slam the brakes on the most effective new treatments and technologies just before they get to patients.

Finally, although we promote innovation, that is not only a priority in the NHS for the Government but for many other stakeholders in the industry. As I said, the Bill is modest in size but it carries the opportunity to ensure that this country is not left behind in access to the newest and best treatments, and that it delivers best value for money.

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[Lord Lansley]

The short answer is yes. We should aim for what is a price paid by the NHS to the industry for the medicines that it uses that is reflective of value and is designed to promote innovative medicines—that is, as we will discuss in a later amendment, those that meet unmet need or add substantially to therapeutic benefit and are not the “me-too” drugs that are very similar to existing medicines but have a slightly different method of operation or delivery. Paying for what innovation gives by way of therapeutic benefit is where we want to be.

However, the amendment is right in the sense that one has to do that alongside supporting the life sciences sector. That is where freedom of pricing at introduction is important. I have accepted the principle of a PPRS which delivers a budget to the NHS and delivers freedom of pricing to the industry. We are not legislating precisely for the structure of the PPRS, but let us assume that those are continuing features. However, through the operation of the rebate or some other means, it seems perfectly possible to incorporate some of the criteria that will be the subject of our discussions on a number of amendments, as is reflected in the second limb of the amendment.

[Baroness Finlay of Llandaff]

The noble Lord referred to me-too drugs. I hope that he agrees that it is important to recognise that such drugs have often been developed in parallel. They do not take a molecule and just copy it; they develop a new molecule or delivery system, often to minimise side-effects and to maximise efficacy. But they also have a production cost behind them. They are not just copies of something previously produced and marketed differently; they have innovation behind them as well.

[Lord Lansley]

I understand that. There is a perfectly good argument for the benefits that are derived from incremental innovation. Not every innovation is a step change compared to what has gone before, so that is a perfectly valid point. One objective that we should arrive at, as I hope my own Amendment 10 will later reflect, is that the structure of value has to understand what those benefits might look like. New medicines will come through that are similar but are significantly better, for example in terms of compliance for patient populations, because they are administered differently. One might say, “Well, it’s a very similar drug”, but one has to look at what the overall benefit might be, which is part of the value.

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[Baroness Finlay of Llandaff]

Let me thank the Minister for that comprehensive reply and for his openness in discussing things with us all. He talks about having discussions with the industry. I hope that he is aware that there is a move by the industry to consolidate into three major hubs, or potentially four. The fourth would be the Oxford-Cambridge-London axis, the other three being those in Boston, in California and in Basle in Switzerland. We are at a critical time, because a lot of change is going on—hence the motivation for so many of us to support the amendment, as we are aware that things are potentially fragile.

[Lord O'Shaughnessy]

I thank the noble Baroness for that point, with which I completely concur. This is obviously a big moment in time, for several reasons. Our current price regulation systems for pharmaceuticals run until the end of 2018 and, in 2019, we will leave the European Union. These things are bundled together and co-dependent; making the right decisions on each of the factors will have a knock-on effect on the rest. I very much understand the point. As I said, my job has the tension of both responsibilities, including health, and the trick is to square the circle.

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[Lord Warner]

My Lords, I support these amendments, to which I have added my name. I do not want to go over again what has just been said, but the issue of access is critical. It is why companies have invested in this country. They criticised NICE when it was first set up; they were highly hostile but have been wooed over, have stayed with the game, played in it and continued to make products which are of great benefit to NHS patients. However, having jumped that hurdle they now see a new one, which is driven not by cost-effectiveness but by cost—a straightforward capping of expenditure at an arbitrary figure of £20 million. The noble Lord, Lord Hunt, was a little critical of NHS England. I would be if I thought that it was only NHS England but I do not believe that the Government are not behind this, putting pressure on it. We already have a massive difference of view between the Conservative chairman of the Health Select Committee and the Prime Minister over how much extra money has actually been put into the NHS. The noble Lord, Lord Lansley, winces, but such measures are being introduced basically to stop the NHS carrying out a legal obligation to implement NICE recommendations. I totally support the amendments in the name of the noble Lord, Lord Hunt, because they are a way of trying to ensure that, where repayments are made, they go back to where they should be, which is in the NHS and helping patients to access new drugs.

[Baroness Finlay of Llandaff]

I have added my name to the first of the amendments. I would have added it to the second, but there was not room—there were already four names there. I strongly support them. The debate so far has related to the pharmaceutical industry, to pharmacies—that is, chemists in the community—and to the NHS but these amendments go to the heart of it, which is access for patients.

One problem with what will feel to a patient like almost arbitrary rationing is that they will know that they have a disease or condition and that there is a drug which, if they lived in other parts of the world or had more money, they would be able to access and which, for one reason or another, they cannot. We must recognise that any costing system for medicines is relatively arbitrary and does not cost in all the social costs of disease progression, or of more severe versus less severe forms. Nor does it factor in the cost to the whole family of the distress somebody feels when they need medication and cannot access a drug which has gone through an appraisal process and whose criteria they can see they fit.

I hope that the Minister will look sympathetically at the principles behind this amendment. If you save money but do not put it back into access to medicines, you are effectively bleeding that area to plug other gaps or deficits in the NHS. As for the patient with the condition who knows that there is medication that probably would help them, although they are well aware that they could be a non-responder, no one should underestimate the anguish to them and their families, or the knock-on effect on society in the long term of failing to ensure access to effective medications.

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[Baroness Finlay of Llandaff]

In light of the noble Lord’s remarks, I wonder how he sees there being flexibility. The problem with establishing a value-based price, however one works it out, is that we do not have a crystal ball. A product may be used for a whole lot of different indications. One example is Rituximab, which was developed for lymphoma but is now widely used for at least seven other indications. Some of those are chronic conditions, so there is long-term use.

Obviously, the company produced a product and a price was fixed estimated on a certain amount of use, but then its sales went up hugely. That represents an enormous profit. In the system that the noble Lord envisages, how much flexibility would be built in to allow for volume sales and a dramatic lowering of the production costs? That has happened with a lot of things that were initially expensive to produce, but where production costs dropped dramatically over time. We must not inadvertently get locked into pricings that over time become inappropriate.

[Lord Lansley]

There is a risk of making this debate too extended, but the amendment is not about the whole structure of pricing but about what criteria should be taken into account. In the context of a PPRS scheme such as the present one, the point I made previously was that it would be possible, for example—and this is only an example—to modulate the rebate by reference to any gap between the price charged to the NHS by a company and the value as disclosed by a comparative assessment.

Of course, if there are a number of different indications, the value may vary according to those indications, but that is no problem in itself because all you are doing is trying to understand to what extent a company would be required to contribute a lot to the rebate because there was a big gap between the price charged and its relative value. Some companies may contribute virtually nothing to the rebate because there is no disclosed gap between the price charged to the NHS for a product and its relative value. That is merely an example of how a scheme could be adapted using this sort of value assessment. I beg leave to withdraw the amendment.

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Moved by

[Baroness Finlay of Llandaff]

15: After Clause 5, insert the following new Clause—
“Specials
After section 260 of the National Health Service Act 2006 (control of maximum price of medical supplies other than health service medicines) insert—“260A Specials(1) When commissioning the production of ”specials”, National Health Service clinical commissioning group, hospital trust and community pharmacies must seek no less than three quotes for non-tariff items, at least one of which should be from a National Health Service manufacturer.(2) Unless there are over-riding reasons not to accept it, the cheapest quote must be selected.(3) When setting the tariff price for “specials”, NHS England, in its tariff-setting process, should seek prices from National Health Service, as well as private, manufacturers.(4) For the purposes of this section, a “special” is an unlicensed batch of a medicine prepared or extemporaneously dispensed.””

[Baroness Finlay of Llandaff]

My Lords, I will now move into a very different area, but one that is integrally related to the Bill: that of “specials”. Concerns relating to specials and obtaining them have been brought to my attention by the British Association of Dermatologists, the Royal College of Ophthalmologists, the Royal College of General Practitioners and others—so the issue goes more broadly than simply dermatology.

Specials are unlicensed medicines manufactured or procured specifically to meet the clinical needs of an individual patient. They may be put on the skin; they may be alternative ways of making a medication that can be ingested when there are swallowing difficulties: for example, in babies fitted with a fine-bore nasogastric tube, and so on. The most frequently prescribed specials are made in small batches, but sometimes there are only one or two patients at any one time in the country who need this particular preparation.

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In conclusion, I hope that I have reassured the noble Baroness that we are engaged in considerable work to improve the value for money that the NHS gets in the procurement of specials. This Bill provides a key element of that ongoing work by enabling us to get information from NHS manufacturers to achieve the result that the noble Baroness and, I believe, all noble Lords seek. However, I have concerns about the impact that the first part of her amendment would have on the cost of operating the system and on prompt access by patients to specials. On that basis, I ask the noble Baroness to withdraw her amendment.

[Baroness Finlay of Llandaff]

I am grateful to the Minister for his very full reply, which I intend to study in detail. While he has made several points, I have ongoing concerns about leaving this unaddressed in the Bill. In light of what he said, I still do not understand why some manufacturers quote different prices for Scotland and England. Their production costs are exactly the same, so why are they quoting higher prices for England? It does not make sense. England is then paying a higher price than Scotland.

The dispensing fee that goes to the community pharmacists is the same, irrespective of the price paid. I worry that the bureaucratic burden of the clinical commissioning group refusing to pay for something because it seems inordinately expensive is a short-term view in the interests of immediate budget containment, and does not take a long-term view over the life course of an illness that could be contained by using something specifically designed for that patient so that, in the long term, there could be a decreased cost to the NHS. I remain concerned.

I have absolutely no intention of there ever being delays in accessing things in an emergency, but only where a patient is not in an emergency situation. In the community, the pharmacist often does not have things in stock anyway and has to order them. The patient or their representative has to come back the following day or 48 hours later, when something has arrived. I am not convinced that the bureaucratic burden would be that great. I can see that three quotes may be too many, but an alternative quote might be a way forward. In the meantime, I beg leave to withdraw the amendment.

Amendment 15 withdrawn.

NHS: Community Pharmacies

Baroness Finlay of Llandaff Excerpts

Tuesday 6th December 2016 Lords Chamber

[Lord Prior of Brampton]

My noble friend has made a very good case in support of community pharmacies, which provide a fantastic service. My own local community pharmacy provides an extraordinary service for people living in the part of rural Norfolk where I come from. They have an important role in public health as well.

[Baroness Finlay of Llandaff (CB)]

Will the Government undertake to review the funding model for community pharmacies? If they are undertaking more diagnostic services and reviews and giving more advice, while also rationalising the medication people are on, they are effectively advising themselves out of a source of income when they are reimbursed with dispensing fees. If they are going to lose income, it is very difficult for them to advise people to come off a range of medication.

[Lord Prior of Brampton]

My Lords, we have just looked again at the community pharmacy funding model and have decided to go from a purely volume-based payment structure to one with much more quality embedded in it, and to remove the permanent establishment fee over time. At the same time, we are developing the pharmacy integration fund, so that in future pharmacies will provide some of the care currently provided by highly pressurised GPs and NHS 111 services.