Southern Health NHS Foundation Trust

Mark Durkan Excerpts

Thursday 10th December 2015 Commons Chamber

[Mr Hunt]

I can of course give my right hon. Friend that assurance, but there is a note of hesitation in my response. That is partly because professional standards, as my right hon. Friend knows, are not a matter for politicians—they have to be set independently by the General Medical Council and the Nursing and Midwifery Council—and partly because if we are going to improve the reporting culture, which in the end is what the report is about, we have to change the fear that many doctors and nurses have that if they are open and transparent about mistakes they have made or seen, they will get dumped on. That is a real worry for many people. Part of this is about creating a supportive culture, so that when people take the brave decision to be open about something that has gone wrong they get the support that they deserve.

[Mark Durkan (Foyle) (SDLP)]

As well as asking the Secretary of State how the learning on this very important issue will be shared with the devolved Administrations, may I ask whether all other trusts are being advised that they will now probably receive approaches from families —no doubt Members may be contacted in this regard, too—who have questions about their own experiences? Will he ensure that they will be sensitive to such approaches about possible historical cases?

[Mr Hunt]

I can give the hon. Gentleman that reassurance. Trusts understand that that is already happening and has been happening. All trusts will have families that have been in touch with them with concerns about potentially avoidable or preventable deaths. I hope that this will be a reminder to all trusts that they need to take those concerns very seriously indeed.

New Cancer Strategy

Mark Durkan Excerpts

Thursday 19th November 2015 Commons Chamber

[Mark Durkan (Foyle) (SDLP)]

It is a pleasure to follow the hon. Member for Bury St Edmunds (Jo Churchill), particularly as she ended by referring to off-patent drugs. She spoke powerfully on Second Reading of the Off-patent Drugs Bill, which was promoted by the hon. Member for Torfaen (Nick Thomas-Symonds) only a couple of weeks ago. This debate draws on many points made in previous debates, including that Second Reading debate and Westminster Hall debates. There have been debates about the cancer drugs fund, specific cancers and, recently, secondary breast cancer.

I am an officer of a number of all-party groups, including that on cancer, which is so ably led by the hon. Member for Basildon and Billericay (Mr Baron), who secured this debate. We have also heard from colleagues who are members of other all-party groups, including the hon. Member for Scunthorpe (Nic Dakin), who is on the all-party group on pancreatic cancer, and the hon. Member for Castle Point (Rebecca Harris), who is doing so much to raise awareness and to promote action on and understanding of brain tumours.

I welcome the fact that the Backbench Business Committee has afforded us this opportunity to join up what might otherwise appear to be disparate work. The APPGs are not rivals—their efforts are entirely complementary. The cancer strategy is a benchmark document and this debate gives us an important opportunity to consider how we can marshal parliamentary effort and will behind it. We need Ministers in the Department of Health and elsewhere to know that we are not taking it for granted and that, just because we have had unmet need for a long time, that should not continue to be the case. I would like to hear a Minister tell us that their portfolio means that they see themselves as the Minister for meeting unmet need. If they set that target and seek to make that change and turnaround, they will have many backing vocalists from the different all-party groups.

Other hon. Members have said that there may be some issues with aspects of the cancer strategy, but it clearly lays down some important standards, not least on a recurring message that the APPGs get from the evidence we receive, namely the question of early diagnosis.

[Mr Baron]

The hon. Gentleman is a good friend of the all-party group on cancer. He will already know this, but it is worth putting it on the record that the separate all-party groups on cancer are endeavouring to get their act together and to speak with one voice where there is a common interest—and there are many when it comes to cancer.

[Mark Durkan]

I fully recognise that point. That was what I was trying to say when I said that the APPGs are not rivals. This debate allows us to bring together their work and their common message, and to acknowledge the work of the hon. Gentleman and the chairmen of the other APPGs. In that regard, I should also mention the hon. Member for Washington and Sunderland West (Mrs Hodgson). She cannot be here this afternoon, but she has done so much on the all-party groups on ovarian cancer and on breast cancer.

Early diagnosis is a common theme and the issue is not just about making sure that there is more access to diagnosis. The hon. Member for Bury St Edmunds has mentioned how many people end up being diagnosed in A&E, which is not what should happen. Although certain cancers raise more sensitive and technical questions than others, there needs to be more awareness among GPs, and diagnostic tools are also key. However, this is about not just ensuring earlier diagnosis with better use of diagnostic tools, but ensuring much clearer referral pathways. The cancer strategy sets a target of making sure that, by 2020, 90% of people are diagnosed within a month to see whether or not they have cancer. That is a very good working standard.

All the APPGs, particularly the all-party group on cancer, have strongly suggested that the indicator of one-year survival rates would be a very good test of our ambitions and efforts and of the actions of health authorities. That working standard needs to be adopted, because it would help us to monitor and manage our progress.

I am conscious of the fact that I speak as a Member from Northern Ireland, whereas the cancer strategy and much of this effort relate to England. However, as everybody knows, in a lot of these areas we are talking about predictive policy. When we set frameworks or national strategies on particular diseases or illnesses for the NHS in England, they can extend, through policy airspace principles, to the devolved areas. That is one reason why I have no hesitation in joining in the work of the APPGs here—it helps to advance understanding at home.

Of course, that was not the case with the cancer drugs fund. We do not have a Northern Ireland version of that, which has led to the frustration that was identified by the late Una Crudden, who suffered from ovarian cancer. Many of the drugs that were available in England under the cancer drugs fund had been the subject of clinical trials in the excellent centre in Belfast, yet they were not available to patients in Belfast.

The success of the cancer drugs fund has shown its limitations, which is confounding us in thinking about how to develop and replace it. When considering the future of the cancer drugs fund and what will succeed it, I ask him to think not just about doing something for England and then seeing whether the devolved Administrations can match it or do better, but about the possibility of a UK-wide funding pool for some of the newer drugs and for some innovations in research and diagnosis, such as molecular diagnostic testing, which comes under the cancer drugs fund. Perhaps this is a conversation that we need to have with the Chancellor in the context of his announcement next week and what will happen beyond that. I am saying not that it should all be funded by London, but that there could be a pool of money to which the devolved areas contribute, with common standards and bands. It might be that certain groups of patients would then be covered by further arrangements made at the devolved level.

The more commonality and consistency we can bring to funding, the better. It would make it so much better for the many good cancer charities and policy advocacy groups that work with cancer patients, which have to busk around the different Administrations to see who has what bit of money. That also creates a lot of confusion at the parliamentary level. It is hard for us to join up our efforts and marshal our arguments when we are dealing with different structures and systems. The more commonality we can create in funding, particularly in the area of innovation, the better.

Perhaps there should be a UK-wide effort, or perhaps it should go beyond the UK. The British-Irish Council includes all eight Administrations on these islands, including the south of Ireland. Perhaps there should be a common effort at that level, given some of the clinical networks that will be involved. When we consider the rarer cancers that will not be treated in some of the other places, perhaps a more united effort would help to take the thinking forward. A lot of the ingredients in the cancer strategy for England might best be brought forward as part of a combined strategic effort on cancer across these islands.

Off-patent Drugs Bill

Mark Durkan Excerpts

Friday 6th November 2015 Commons Chamber

[Alistair Burt]

After I have dealt with the other interventions, I will deal with the actions since last year’s Bill.

[Mark Durkan (Foyle) (SDLP)]

We listened to a debate earlier in which we heard about many much-loved fictional characters. This Bill is about real people with real conditions and making real-life differences for them, and we are yet to hear a real argument against it. I remind the Minister of what he said at the conclusion of the last debate about not denying sunshine. Why is he acting as an agent of darkness on this Bill?

[Alistair Burt]

Because if the message that goes out from this debate is that there is only one way to get these drugs, and if people feel that they cannot get them because of what has been said here, that would be darkness indeed. That is not the truth. That is not the position.

Secondary Breast Cancer

Mark Durkan Excerpts

Wednesday 21st October 2015 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

I congratulate all colleagues on an excellent debate. It is a shame that time has slightly beaten us. I fear it will beat me as well: if I am to allow a minute or so for my hon. Friend the Member for North Warwickshire (Craig Tracey) to respond at the end, I might not have the chance to make some of the points I would like to have made. Nevertheless, this debate in Breast Cancer Awareness Month is very timely for all the reasons mentioned. There have been some important contributions. I always enjoy listening to the hon. Member for Central Ayrshire (Dr Whitford); she brings incredible experience to debates of this nature.

As the cancer drugs fund was debated in this Chamber only yesterday with my hon. Friend the Under-Secretary of State for Life Sciences, I will not touch on that so that I save a little time. As others have said, we want to do a lot better in tackling cancer, and our aim is to lead the world. Survival rates are getting a lot better: for people diagnosed between 2011 and 2015, we are on track to save a projected 12,000 more lives a year. But we do want to go further. Nevertheless, as we ask what more we can do, we should acknowledge that we are making progress, although much of the rest of the world is too.

In January, NHS England asked the independent cancer taskforce to draw up a five-year strategy. It was published in July and recommends a range of improvements across the cancer pathway. Some Members were present in the House in July when the chair of the taskforce, Harpal Kumar, presented its conclusions to us. The strategy is an excellent bit of work and, as our manifesto made clear, we are working with the NHS, charities and patient groups to deliver it. It is important to tell the House that to support the delivery of the strategy, NHS England has appointed Cally Palmer, chief executive of the Royal Marsden NHS Foundation Trust, as NHS national cancer director. While continuing in her current position, she will lead the implementation of the strategy, alongside work to test new models of care at the Royal Marsden hospital and University College London hospital, in partnership with Manchester Cancer. Those are important developments.

The importance of secondary breast cancer was acknowledged in the taskforce report, which noted that all NHS trusts should now be recording recurrent and secondary breast cancer patients, but we acknowledge that uptake has been variable thus far, as highlighted in the opening speech. I made the importance of data collection one of the strategic priorities in my letter to Public Health England earlier this year, so we know that we need to do better.

Following a 2012 pilot managed by the National Cancer Intelligence Network, all breast units have been required to submit information on all patients diagnosed with a new recurrence or metastatic disease through the cancer waiting times process. For breast cancer cases, that now includes a data item on cancer recurrence. Data have been submitted monthly since January 2013, but collection remains challenging because relapsed patients may re-present in many different ways and through many referral routes, as the hon. Member for Central Ayrshire mentioned. For example, they might re-present through a routine follow-up appointment, by contacting their GP with renewed symptoms or by presenting with another unrelated condition, at which point secondary breast cancer has been diagnosed. There are some practical barriers, but we do need to do better.

To drive up the quality and completeness of the data, trusts are sent monthly reports so that they can benchmark themselves against other trusts, which has been effective in driving up performance in other areas of cancer care. Over the next year, those reports will include data on recurrence of cancer. In addition, more work is being scoped by NHS England and Public Health England based on the recommendation from the cancer taskforce to establish robust surveillance systems to collect relevant data. We know there is more to be done on the detection of secondary breast cancer, which can be diagnosed many years after primary breast cancer, as other Members have said. Although survival rates are improving, the breast cancer clinical reference group of NHS England is determined to ensure that everything possible is done to reduce the risk of secondary breast cancer. The group is in the final stages of producing a guideline on breast cancer services to improve information given to patients about the risk of secondary breast cancer. Such information is currently variable and sometimes inadequate, as highlighted by my hon. Friend the Member for Bury St Edmunds (Jo Churchill).

[Mark Durkan (Foyle) (SDLP)]

Will the Minister give way?

[Jane Ellison]

I will take the briefest of interventions.

[Mark Durkan]

The Minister touches on a point that reinforces the fact that, as a basic rule of thumb, policy makers and service planners should know the numbers and the needs. She addressed the numbers when she spoke about data. Knowledge about needs is best developed by listening to the patients themselves, who expressed those needs forcefully in the five-point bucket list from Breast Cancer Care.

[Jane Ellison]

I am sure we would all agree with that important point.

I will finish by discussing the new guideline that the clinical reference group is developing. The guideline will state that all patients with primary breast cancer should have a consultation with a clinician at the end of treatment that will include advice on spotting signs and symptoms that might indicate secondary breast cancer. That information will be delivered together with an assessment of the patient’s physical, psychological and social needs—I am interested in the distress thermometer that the hon. Member for Central Ayrshire mentioned, as well as in the contribution of the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron). The overall recovery package is being developed in partnership with Macmillan Cancer Support. The evidence is that that work is very effective where it has been done well. The advice that has been given will be recorded in the records of every breast cancer patient so that we know it has happened and so that we can track it.

NHS England hopes to publish the new guidance as a cancer resource on its website in the next few weeks. We will promote that guidance through the usual channels, but we would appreciate it if hon. Members with a particular interest, and particularly my hon. Friend the Member for North Warwickshire—I congratulate him on his appointment as co-chair of the all-party group—could draw this important document to people’s attention.

The clinical reference group will also consider how the care and support of patients diagnosed with secondary breast cancer can be improved, including through the provision of clinical nurse specialists. Of course, we agree that clinical nurse specialists play an important role. The number of patients reporting that they have been given the name of a CNS rose from 84% in 2010 to 89% in 2014, including 93% of breast cancer patients. We are doing a lot better, but hon. Members are right to highlight that, in the case of secondary breast cancer, we have some distance to go.

Members have said that we need to step up on palliative care, particularly in the light of last month’s debate—the hon. Member for Central Ayrshire made an important speech in that debate. We are committed to ensuring that everyone has access to high-quality, personalised palliative care. Breast Cancer Care’s new report, “Too little, too late”, is an important contribution to the debate about what we need to do. The Government have introduced five new priorities for end-of-life care—those are five important new principles—and my ministerial colleagues will be taking that forward. Nevertheless, I welcome Parliament’s new focus on palliative care and quality end-of-life care, which is important.

In the few seconds that I have remaining, I want to give people confidence that a lot of research is going on in this area. There is more research into cancer than any other disease in terms of National Institute for Health Research funding. In particular, the NIHR’s clinical research network is currently recruiting patients for nearly 100 trials and studies in breast cancer. One is a global trial that aims better to control secondary breast cancer using a drug called a dual mTOR inhibitor. I am delighted to say that the network recruited the first patient in the world to this trial, which I hope is an indication of the importance of our research infrastructure.

Cancer Drugs

Mark Durkan Excerpts

Tuesday 20th October 2015 Westminster Hall

[Mark Durkan (Foyle) (SDLP)]

As other hon. Members have said, it is truly a pleasure to serve under your chairmanship, Mr Hollobone. I want to begin by commending the hon. Member for Strangford (Jim Shannon) on securing this debate and giving us an opportunity to discuss an issue that is important to many people and families in every constituency that is represented in this House. The issue is important not just because of the scale of cancer’s impact, but because people are confused about some of the policies: the policy language and all the different funding mechanisms that seem to afflict delivery of treatments and options for new drugs.

I endorse much of what the hon. Member for Scunthorpe (Nic Dakin), who chairs the all-party group on pancreatic cancer, said about Abraxane. I, too, am an officer of that group. Abraxane is a perfect but terrible example of exactly the confusion and concern that people feel. Here is a drug that was supported by NHS England, but will be withdrawn on 4 November. People do not understand why, in this day and age, with evidence-based policy and all the intelligence that we are supposed to have at the disposal of the public policy system, we have a snakes-and-ladders system that means that drugs are available in some places but not others, or are available for certain periods but then are not.

As the Minister will probably tell us, part of the problem goes back to pressure on the Cancer Drugs Fund. The fund was a positive innovation, but it was meant to be a transitional step—something to make good the problems with the National Institute for Health and Care Excellence and its approval system, which was leading to poor rates of approval for many cancer drugs. Most of us, across all political parties, thought that there was a problem with drugs breaking through the NICE approval thresholds. The Cancer Drugs Fund was a deliberate innovation aimed at ensuring that in the short term more drugs would be available and used under that specialist mechanism, with the intention that underlying problems and issues with the NICE regime would be resolved.

Now, the Cancer Drugs Fund has ended up with its own budget pressures. Thankfully, the Government have topped up the fund over various periods, but that applies to NHS England. In Northern Ireland, where my constituency is, we did not have a bespoke cancer drugs fund and we were caught in the twilight zone of drugs seeming to be available and being discussed in debates such as this as though they were available when they were not available in Northern Ireland. The terrible irony is that some of the drugs that were available under the Cancer Drugs Fund were the subject of clinical trials.

The hon. Members for Strangford and for the hon. Member for Upper Bann (David Simpson) referred to the centre at Queen’s. What I am probably most proud of in my political contribution is that as Deputy First Minister I insisted on securing funding for the regional cancer centre in Belfast. We designed it as part of the reinvestment and reform initiative. When we negotiated with Tony Blair and Gordon Brown, I made it clear that we wanted a down-payment for the new borrowing power. The first thing we wanted to do was invest in the cancer centre at Queen’s, without messing around with public- private partnerships or anything else. We wanted a straight-up investment.

That cancer centre, like so many others, is working miracles every day, but alongside the miracles performed by those who carry out surgery or lead the radiotherapy units that the right hon. Member for Oxford East (Mr Smith) discussed, there seem to be debacles with funding policy and schemes.

There is a question about what will happen. We are supposed to be looking at a merger of NICE and the Cancer Drugs Fund. The fund is meant to move on from next year, but people who are directly involved and who deliver cancer services and campaign on cancer policy have no clear feeling about what is happening. People’s hopes are at stake, and they are confounded by what has happened with Abraxane and many other drugs that will no longer be available from 4 November.

We are blessed in this debate because the Minister not only speaks a lot about innovation, but in many ways has become a bit of a byword for innovation—and not just in life sciences. I hope that he and his colleagues can be truly innovative in the policy instruments and funding mechanisms that they hope to introduce. A key issue, which other Members have touched on, concerns not just provision of funding but control of prices and their negotiation. We must make sure not only that we have funding mechanisms that we understand, but that there is real leverage in price negotiation if we are to make those drugs truly available.

In these islands, we have a number of different Administrations and perhaps we need to do more to achieve combined purchasing power strength. One of the most neglected and underused creations of the Good Friday agreement is the British-Irish Council, which brings together all eight Administrations across these islands. That is a very good example of where those eight Administrations need to collaborate much more effectively, combining their leverage to make sure that there is a more consistent and compatible policy on available drugs, services and treatments, and to provide strength in combined purchasing when negotiating.

Devolution gives us the benefit of being able to innovate and take things forward in slightly different ways. I look forward to hearing the word from Scotland—from the hon. Member for Motherwell and Wishaw (Marion Fellows)—because, as we have heard in previous debates, Scotland moved to a new drugs fund that combined elements of the Cancer Drugs Fund with responses dealing with rare diseases. That, too, is subject to its own pressures and there are difficulties about what gets through and what passes the requirements test for funding and availability.

Obviously we do not have clinical expertise or a full understanding, but we are meant to be able to assist with policy constructs and governance, and we can do more. We should encourage the Minister to work with colleagues, not just in the devolved Administrations, but also with the Irish Government—all eight Administrations across these islands—to do more with the drugs companies and to achieve better understanding.

That would be a great help to the many people who provide key services, innovating, researching, and conducting clinical trials, not just in the cancer centre at Queen’s, but in other locations throughout these islands. It makes it much easier for them if they know that they are working against a better policy-meshed backdrop at the level of government; that the challenge funds are there for their research work; and that the collaboration that they are trying to achieve with commercial companies is matched by real price leverage and positive price control effort, as well as conscious usage planning on the part of Governments.

As the right hon. Member for Oxford East said, the issue is not just cancer drugs. Surgery is a key issue and none of us wants to understate its importance, nor that of radiotherapy. In my constituency, thankfully, a radiotherapy unit will open in 50 weeks’ time. It will be a cross-border unit, again using some of the models and ideas in the Good Friday agreement. The new radiotherapy unit, which will be part of the new cancer centre at Altnagelvin hospital, is funded by the Irish Government as well as the Northern Ireland Administration. It will make a huge difference to many people, assisting them on their cancer journey and making sure that they have less arduous physical journeys.

I look forward to the Minister’s response and the ongoing work that I know he wants to do. I hope that he takes that work forward with colleagues throughout all the Administrations in these islands and not just with his Whitehall colleagues.

--- Later in debate ---

[George Freeman]

I will come to that important point as I deal with some of the questions that have been raised.

On the wider issue of cancer treatment, I want to highlight the announcement that the Secretary of State recently made on setting out our cancer strategy and the work of the cancer taskforce. We have set out important measures on a wider treatment regime for cancer. By 2020, NHS patients will be given a definitive cancer diagnosis or the all-clear within 28 days of being referred by a GP. This will be underpinned by an extra £300 million a year by 2020. We are launching a new national training programme that will equip another 200 staff to develop the skills and expertise to carry out endoscopies by 2018. We have a commitment from NHS England to implement the independent cancer taskforce’s recommendations on molecular diagnostics. This will mean that around 25,000 additional people a year will have their cancers genetically tested to identify the most effective treatments.

I have been absolutely insistent since day one when we launched the genomics programme that this deep science project should be embedded in NHS England. Patient recruitment for the project comes through the 11 genomic medicine centres in NHS England, and NHS England is now developing an infrastructure for doing genomic and molecular diagnostics in the mainstream NHS. We want the NHS to be the first health service in the world to launch genomic medicine for all as part of our universal 21st-century offering. A lot of work is going on at the moment on how we build the infrastructure for molecular diagnostics.

Our aim is that, by 2020, everyone diagnosed with cancer will benefit from a tailored recovery package, individually designed to help each patient. We are also committed to empowering patients and giving them much more information, so that those who choose to do so will be able to access personal health information, such as their test results, diagnosis, treatment history and their cancer recovery package, online. By 2017, there will be a new national quality of life measure to help to monitor how well people live after their treatment has ended, enabling priorities for improvements to be identified. We will continue to work with NHS England, charities and patient groups to deliver those commitments. It is important to remember that as people live with cancer—hopefully, more people will live with it—we will need to invest in the support network for how they live with it, and how we continue to monitor and support them and deliver post-treatment care.

I want to emphasise the importance of the role of NICE. Nothing I am about to say in any way undermines our commitment to its independent role and expertise in guiding and supporting decision making on drug access with the latest evidence and health economic leadership. In no way do we want to undermine its position. NICE has led the world. That is a great tribute to it and to the UK’s system. We are clear that if a drug is recommended by NICE, the NHS is legally required to fund it. Over the years, many thousands of people in England have benefited from the cancer drugs that NICE has recommended. These include Herceptin, Yervoy, and Zytiga for prostate cancer.

Most recently, hon. Members will have seen that NICE published final guidance on 7 October that recommends Keytruda, or pembrolizumab, for the treatment of advanced melanoma, after disease progression with Yervoy. I urge NICE to embrace the new technologies. I will talk about that in a moment. I am particularly pleased to be able to announce that in the early access to medicine scheme, which we launched last year as the beginning of the new landscape and which I have asked my accelerated access review to look at beefing up and developing, the first drugs have come through. They have been fast-tracked.

I am delighted to confirm to the House that NHS England has now undertaken routinely to fund the use of NICE-recommended early-access-to-medicine products within 30 days of NICE guidance being published. Colleagues will know that the scheme was established so that an innovative drug may be designated a promising, innovative medicine, and if there is no alternative mainstream therapy, the treatment can be fast-tracked into patients, with their consent, and rapid assessment carried out. The link to NHS England commissioning had not been established, but it is now in place. I am delighted that the first drug has gone through that system, and we hope that more will follow.

[Mark Durkan]

I welcome the Minister’s words on the progress of early access, but does he recognise that since 2011 NICE has turned down every new breast cancer medicine, while the cancer drugs fund has approved six new breast cancer treatments in NHS England? Between April 2013 and March 2015, that represented more than 2,000 extra life-years for patients coming from the CDF—life-years that NICE did not deliver.

[George Freeman]

The hon. Gentleman tees me up perfectly for the next section of my speech, because I want to deal with access to drugs and the Cancer Drugs Fund. We all recognise, not least the Prime Minister, that access to drugs is essential in this landscape, which is why he personally led the launch of the Cancer Drugs Fund—I thank the shadow Minister for paying tribute to that leadership. We have now committed just over £1 billion to the Cancer Drugs Fund—a substantial investment—and just under 80,000 patients have benefited from treatments that otherwise would not have been approved. They are largely treatments that NICE has turned down and the Cancer Drugs Fund has then stepped in to fund.

Because of the cancer field’s leadership in this new model of drug discovery, the rate of new drugs coming through is increasing and going to a targeted patient base. The smaller patient catchment for which industry must recover costs has driven it to raise prices and costs. In many ways, it has challenged NICE’s traditional £30,000 per quality-adjusted life-year model. It is driving huge pressure on our traditional model of health-economic reimbursement.

As Members have said, and as the National Audit Office report recently highlighted, the CDF was originally established as an interim measure to ensure that cancer patients were not denied drugs while we fixed the landscape. Although I have been in post only 15 months, I hope colleagues can see that the reviews of accelerated access and the CDF are not accidentally aligned. We are currently looking at how we make sure we support access to innovative medicines. Where cancer has led, other therapeutic areas will follow.

The genomic and informatics revolution will require NICE to change how it works. The explosion of progress in this field is what has put so much pressure on the CDF. Ever more treatments are coming online, but NICE is turning down ever more treatments on very well respected health-economic grounds. Those are difficult judgments about what represents health-economic value for the system and for patients. The CDF does not have a built-in discounting mechanism: it effectively takes the price on the basis of which NICE has rejected the drug and agrees to pay it. We want to look at whether we might use our extraordinary purchasing power to use the fund in a more productive way to get earlier access and, in return, discounts. That is what the accelerated access review is all about.

It is important to confirm that if NHS England decides to de-list a drug, any patients who have received a drug through the cancer drugs fund will continue to receive it. Where patients, particularly those with rarer cancers, are unhappy with a recommendation to de-list and their clinicians advise it, they can initiate individual cancer funding requests, an important avenue that many patients are successfully using.

I want to discuss the accelerated access review and respond to some of the questions that have been asked. I launched the review this time last year, asking and challenging the system to answer three big questions. Given the NHS’s extraordinary position as a universal, single-payer health system with leadership in genomics and informatics, the review is about asking what we can do to accelerate how we get innovation to patients. I have asked three specific questions. First, what can we do to shorten the time, cost and risk of getting innovation to that all-important moment of first use in patients? How can we make things quicker both for the patients who need it and for researchers, so that they can get those all-important human clinical data?

Secondly, what can we do to help NICE to embrace new flexibilities and pathways and to use genomics and informatics to update its systems, in order to deal with the issues raised by a number of colleagues relating to the end of the one-size-fits-all blockbuster model so that, in the 21st century, NICE has more tools at its disposal and more adaptive pathways—to use the jargon—to open up those flexibilities?

Thirdly, I have asked the accelerated access review to look at what barriers we can knock over and what incentives we can put in place to speed up the roll-out of innovative drugs and device diagnostics across the system. Unfortunately, there is great variation in the pace at which innovation is rolled out. In many ways, the CDF has pioneered on the very problems with which the system is now confronted. I am convinced that the CDF will be part of the solution. I cannot prejudice NHS England’s consultation, but I can reassure Members that, through the accelerated access review and the comprehensive spending review, we are looking at what we might be able to do to ensure that our commitment to funding innovative cancer medicines through the CDF also supports the broader landscape for innovative medicines. We will have to wait to hear the detail in the comprehensive spending review and subsequent announcements at the end of the consultation.

I want to deal quickly with one or two of the points made in the debate. The hon. Member for Upper Bann (David Simpson) made an important point about the different parts of the United Kingdom co-operating. As the UK Minister for Life Sciences, I am very conscious of leadership in Scotland, Wales and Northern Ireland, and would be interested to follow up on his point about using the broader network.

The hon. Member for Scunthorpe (Nic Dakin) asked me about NICE looking at exceptional circumstances. The accelerated access review is looking at whether we can give NICE more freedoms and flexibilities. The hon. Member for Motherwell and Wishaw (Marion Fellows) made an important point about the Scottish model—the innovative medicines fund there, the Scottish Medicines Consortium and the importance of patient voice, of which I am very conscious. She also discussed health inequalities, which are important.

Various colleagues asked about Abraxane. NICE is in the process of developing guidance on Abraxane for pancreatic cancer, which it expects to publish very shortly. The hon. Member for Strangford made an important point about data. We recognise that we need to be much better at gathering and using the data from the CDF. A data-sharing agreement between NHS England and Public Health England was signed in July.

In closing, I thank the shadow Minister for his support for the cancer drugs fund. We are intent on it remaining focused on access to drugs; we are tackling the wider treatment regime through the cancer strategy I have set out.

Contaminated Blood Products

Mark Durkan Excerpts

Wednesday 9th September 2015 Westminster Hall

[Jane Ellison]

I have done my best to ensure that the House and individual Members are kept informed at all times. I have had a number of individual Member meetings. I will touch on this again, but I will of course look to keep the House informed on all important timelines, as we have to date. The all-party group, to whose comprehensive report my hon. Friend rightly referred, has informed our thinking, but there has never been a public consultation on any aspect of scheme reform. No Government have done that before, so this will be the first time that any formal public consultation has been undertaken.

[Mark Durkan (Foyle) (SDLP)]

Will the Minister give way?

[Jane Ellison]

No. I will touch on the issue of drugs, and if there is time afterwards, I will take another intervention.

Many Members are aware that a new generation of promising drug treatments is emerging that has the potential to offer an effective cure for many patients with hepatitis C. The National Institute for Health and Care Excellence issued guidance recommending two of the drugs earlier this year, and those are now routinely available on the NHS for eligible patients. NICE is developing guidance on three further treatments and has recently consulted on draft guidance. NHS England announced in June that it has made £190 million available this year so that patients with confirmed cirrhosis from hepatitis C can benefit from the new treatment options. In previous debates, I have offered advice to Members on how constituents who are worried that they are not getting access to those options, yet meet the clinical guidelines, can get access. In particular, it is important that patients to talk to their hepatologist.

We estimate that around 550 individuals infected with hepatitis C through historical treatment with NHS-supplied blood and blood products can now access the new treatments under the NHS’s interim commissioning policies. As the Secretary of State committed to on 25 March, the Department of Health is continuing to work to bring transparency to the matter of infected blood. The documents covering the period from 1970 to 1985 have been published in line with the Freedom of Information Act, and are available on the National Archives website. The Department is completing the transfer of the documents that we hold for 1986 to 1995 to the National Archives. Once those have been handed over, the National Archives will need to take the records on to its systems and make them available on its “Discovery” website. As to the precise date, we had hoped that it would be this summer, but for technical reasons the National Archives has indicated that it anticipates the documents being made available on its website after the January 2016 releases. I stress that that is only for technical reasons associated with the transfer of the documents.

I appreciate the House’s frustration and I am sorry that I will not be able to let the hon. Member for South Down back in to respond at the end. I understand the sense of urgency and the need for change. In hoping to reach a conclusion as soon as is practicable, I have, through the hon. Member for Kingston upon Hull North (Diana Johnson), offered parliamentarians a meeting ahead of the consultation so that I can hear their concerns and suggestions and so that they can contribute to shaping scheme reform.

Motion lapsed (Standing Order No. 10(6)).

Drugs: Ultra-rare Diseases

Mark Durkan Excerpts

Tuesday 16th June 2015 Westminster Hall

[Dr Whitford]

The important thing to remember is that if this is all done by individual requests, the NHS does not go to the companies. We need to realise that companies have often made investment over decades and that nine out of 10 drugs they research will go nowhere, but it is important to have a wider debate with companies to get the best price. Hon. Members mentioned that some companies are willing and able to reduce the price to get a drug in.

Drugs are licensed. We must not mix up licensing with funding. Licensing is about asking, “Is this drug safe and proven at a basic level?”, not anyone coming in and saying, “Rare plant juice will cure everything.” These are licensed drugs that we could prescribe—a doctor has the right to prescribe them—but the NHS has to make the decision about whether to fund them; those are funding decisions, not licensing decisions.

It is important that families know what the pathway is and how they move on when their clinician takes a case forward. It is important that they know they can respect decisions and how to lobby at the next step, and that they feel their voice is being listened to. We feel that PACE has, over more than a year, allowed us to do that. Clinicians in Scotland got frustrated about decisions going through without us informing that decision.

There could be a system that sits on the side of NICE, or a sub-group. One of NICE’s three assessments will never be given over to a drug intended for 88 patients when it is also assessing drugs that might be taken by 500,000 people. Rare diseases would always fall behind, and that is why those must have their own system and why the patient voice must be heard in these ways. Obviously, things have changed with the Health and Social Care Act 2012, but I commend such a structure to the Minister.

[Mark Durkan (Foyle) (SDLP)]

The hon. Lady is making a thoughtful contribution. Does she agree that it would be worth all Administrations in these islands, who together form the British-Irish Council, collaborating on these issues, particularly borrowing from the good example being developed in Scotland, and seeing whether there can be common achievement and common advances, and perhaps even creating some common funding stream, as well as the discrete funds that she has talked about?

[Dr Whitford]

Obviously, devolution gave us the power to do things differently, but I do not think that we should re-invent the wheel. Often, we will accept work done by NICE or re-evaluate it quickly, to see whether things should be applied differently, but we do not just go back to the beginning. However, I am sure that ideas can be shared in both directions.

It seems that certain drugs were left as orphans when the system changed. We know that patients with the brain tumour form of tuberous sclerosis, which the hon. Member for Carmarthen East and Dinefwr (Jonathan Edwards) mentioned, can access the drug through the cancer drugs fund, but if they have a kidney tumour and are treated by urologists they are not part of that system and simply will not be aware of it. Such random unfairness exists.

Nurses and Midwives: Fees

Mark Durkan Excerpts

Monday 23rd March 2015 Westminster Hall

[Mark Durkan (Foyle) (SDLP)]

As other Members have said, it is a pleasure to serve under your chairmanship, Mr Havard. I commend the hon. Member for Blaydon (Mr Anderson) on securing this debate. I suppose he is a gamekeeper turned poacher on the Backbench Business Committee. He ensured that the e-petition, which gathered a significant number of signatures, would be debated before the close of this Parliament.

It is a pleasure to follow not only the opening speech from the hon. Gentleman, but also the insights from the hon. Member for Easington (Grahame M. Morris). His teasing out of where some of these issues could go are reinforced by his experience as a member of the Health Committee. It was also a pleasure to hear from the hon. Member for Congleton (Fiona Bruce), who talked about a particular constituency case that has given strong, more than anecdotal evidence that corroborates some of the issues raised by other Members on how the NMC is having to work, because of the position it is in. It is important that we consider issues relating not only to how the NMC works and whether its cost burdens should be alleviated in different ways or apportioned, but to the Professional Standards Authority, the funding source and scheme of which seems to be fundamental to the inequities we are discussing.

Many people wonder what Parliament’s role is in all this. They think Parliament is meant to oversee the health service and strong public service ethics, but it appears to wring its hands when these changes come along but everyone seems powerless to do anything. I tabled a prayer of annulment against the order that has brought about the increase in fees—early-day motion 697 if any Members want to scrabble in and sign it before Dissolution. However, it is only a prayer of annulment. As the hon. Member for Easington said, many people have written to MPs in all parts of the UK, but they are left bemused by the responses they receive. At least now we are having this debate, courtesy of the hon. Member for Blaydon. I look forward to hearing the Minister respond to it.

The point has been made that those who have to register with the NMC have faced pay restraint for a number of years. They are locked into pay freezes, and many are coping with the perverse and inequitable outcomes of the “Agenda for Change”. That has been the case for many professionals in my constituency in Northern Ireland, who have not only questioned where they are in relation to particular bands and how their responsibilities have been correlated with others, but found themselves at odds with what has been decided in neighbouring health trusts.

If people are already facing so many frustrations relating to their pay and conditions, they are particularly aggrieved when they are hit with what is essentially a vocational tax. They are being told that because their vocation is so important and sensitive and is subject to a registration process that is open to fitness-to-practise procedures, they have to pay more for the privilege of continuing to work. They are not being paid any more—they are actually being paid less—but they are having to pay more to register to turn up to work. Surely that is unfair and inequitable.

The fees have gone up from £76 to £100, and now to £120. That is just shy of a 60% increase in a small number of years, and people are rightly aggrieved. If that has been the form over a couple of years, they will ask whether it will be sustained—will it project into the future? There is a proper question for us to ask in Parliament and for Ministers to answer. It is not enough simply to say, “Well, this is the process we have. The NMC has to make the decisions and there is nothing we can do about it.” A couple of years ago, because of the pressure of the number of fitness-to-practise cases, the Government saw fit to use a £20 million subvention to help to relieve the situation, so why could not a further subvention be used? That would at least provide cover while other changes were introduced.

There are questions about the PSA’s funding being sourced on a per-registrant basis, which seems to line up the NMC for a particularly undue hit in terms of its source funding to the PSA. I will not go through it all again, but hon. Members asked about the cost burden that will arise and the procedural length of fitness-to-practise cases. Other hon. Members asked whether there might now be impressionistic evidence that health service management is using fitness-to-practise cases as a crude management tool. Perhaps they allow management to abscond from some of its more subtle and intelligent responsibilities by transferring crude enforcement to someone else. The cost in such cases is clearly giving rise to what seems to be a completely disproportionate working burden on the NMC.

[Mr Anderson]

I related to what a trade union representative told me about taking people through a fitness-to-practise hearing that lasted 10 days and cost £30,000. Employers may well be trying to prevent exactly that sort of thing from happening and tying up their HR staff—all the witnesses and people they have to suspend. Instead of taking responsibility, employers are parking such issues with the NMC, which has hugely increased its work load and the related costs.

[Mark Durkan]

I thank the hon. Gentleman for making that point and for giving colour to the concerns we feel when we look at the number of cases, the cost burden, the wider impact on the NMC and the costs faced by those who have to register with the NMC. We must remember that the NMC does not only work to service its members’ professional standing. It is there to safeguard not only professional standards but public assurance and the wider public interest.

There is a case for asking whether anything can be done to alleviate and re-profile the NMC’s costs and whether those costs can be better shared so that they do not fall only on nurses and midwives but are spread more widely among all of us who rely on the work and good standing of the regulators of such services.

A number of hon. Members mentioned the proposals in the offing that might allow some of these issues to be addressed. It is not a case of some of us just screaming against a fee increase and saying, “Something should be done about it”—there have been opportunities. Reference has been made to the Law Commission’s draft Bill on the regulation of the health and social care professions. It is disappointing that that has not been taken forward in this Parliament, but it should be soon, because it would provide a context for addressing some of the structural and operational questions about the NMC, as well as other issues of fairness and standards.

When the hon. Member for Easington referred to some of the issues arising from the Francis report, the hon. Member for Blaydon got sensitive about that, but we should recognise that as something else that is affecting nurses’ and midwives’ morale. As well as facing pay restraint and bigger fees, they are facing the wider issue of morale relating to their professional reputation, what with some of the headlines that have come out of the Francis report. No doubt the Minister will pay great tribute to the work of nurses and midwives, but we must listen to their concerns and worries. That is why so many people—not just nurses and midwives—signed the e-petition. They want to hear Parliament speak on this issue, which is why this debate is so welcome. I look forward to hearing the Minister’s response.

Contaminated Blood

Mark Durkan Excerpts

Thursday 15th January 2015 Commons Chamber

[Mr Howarth]

In a word, yes.

[Mark Durkan (Foyle) (SDLP)]

The right hon. Gentleman has said that the risks must have been known. Is he aware that the move to set up a compensation scheme in the Irish Republic was made before full state liability was recognised? That liability was recognised only when a second inquiry showed that the state had known there was a risk, but had continued to use contaminated blood products on the basis that, because the United Kingdom and others were using them, it could carry the risk.

[Mr Howarth]

The hon. Gentleman has made an important point, which I fully accept.

My second example comes from a constituent who wishes to remain anonymous. Her husband, who was a haemophiliac, died at the age of 59 after contracting hepatitis A, B and C through contaminated blood administered in the late 1970s and early 1980s. As a result of receiving that contaminated blood, he had developed cirrhosis of the liver, oesophageal varices, ascites, encephalopathy and liver cancer. Understandably, my constituent says, his quality of life deteriorated year by year and month by month until his eventual and sad death. His haemophilia had prevented him from accessing insurance products such as mortgage protection, and the early retirement necessitated by his ill health had decimated his pension, which had left both him and his wife struggling financially.

My constituent had close family members who also died as a result of receiving contaminated blood. The family has been hit hard by a terrible scandal. Twenty years after the death of her husband, my constituent is still campaigning for justice. The family has been given no explanation of why the scandal was allowed to happen, and why the medical records went missing at local hospitals and in the NHS.

My constituent is now 76 years old, and is herself in ill health. She is looking for answers to a number of questions that are still arising, and she hopes to receive those answers in her lifetime and as soon as possible. The family sent me the following statement, which they asked me to read out:

“My family holds that what has long been needed is for this tragedy, which has already directly claimed the lives of 2,000 haemophiliacs”

to be addressed and put into perspective, in terms of its “scale” and in terms of “financial support”. The statement continues:

“We believe that this disaster…is finally seen as one event…the ‘UK Contaminated Blood Scandal’….the scandal is already Britain and Ireland’s 15th biggest peacetime disaster in terms of death toll, since records began, yet very few people know about it…the UK Contaminated Blood Scandal claimed the third biggest collective peacetime death toll in the UK in the 20th Century. My family believes that until this tragedy is finally seen in the proper terms of its fatalities, and is recorded as such…very few people outside of those whose lives have been obliterated will ever be able to grasp the enormity of a scandal”.

The family make two specific requests. First, they call for the current support groups to be disbanded and a new, comprehensive method of support to be introduced to replace the support schemes that are currently available, which they consider to be confusing and unfit for purpose. Secondly, they call for substantial, regular financial support that will meet the care needs of those affected.

I began my speech by saying that this was a debt of honour. I end it by saying that it is a debt of honour that should now be redeemed in full.

Oral Answers to Questions

Mark Durkan Excerpts

Tuesday 25th November 2014 Commons Chamber

[George Freeman]

I was delighted, when we launched the early access to medicines scheme earlier this year, to see the very strong support that we got from the Duchenne dystrophy group. Dystrophy is one of those terrible diseases that desperately need the fast-tracking of new medicines. As I said, last week we launched a major review of our landscape for the earlier adoption of innovative medicines in the NHS, so that patients in the most severe clinical need can take part in cutting-edge research and we get drugs to patients more quickly.

[Mark Durkan (Foyle) (SDLP)]

9. What recent representations he has received on access to off-patent drugs; and if he will make a statement.

[The Parliamentary Under-Secretary of State for Health (George Freeman)]

The hon. Gentleman will be aware of the debate in the House two weeks ago in which I gave a very full statement of the Government’s position on off-patent and off-label drugs. We want to promote their wider use, but we do not believe that the Bill presented to the House is the right mechanism for achieving that.

[Mark Durkan]

Will the Minister borrow from the approach taken with the Medical Innovation Bill, and commit to consulting on whether the Government should support, or how they might pursue, the key purposes of the Off-patent Drugs Bill?