New Cancer Strategy

Mark Tami Excerpts

Thursday 19th November 2015 Commons Chamber

[Mr Baron]

I will do so by all means. Let me express my heartfelt sympathies to my hon. Friend as regards his mother. He is absolutely right that charities such as Bloodwise, as well as many others across the charitable sector, realise the importance of earlier diagnosis. I will give him one statistic that directly answers his question. I spoke at an event about bowel cancer yesterday. The statistics quite clearly show that 90% of people diagnosed in the early stages of bowel cancer survive for more than 10 years, but that figure drops to just 5% if they are diagnosed at a later stage. That is the difference that earlier diagnosis can make.

The logic behind focusing on earlier diagnosis is very simple. We have found over a number of years that the NHS is as good as any other healthcare system at getting patients from the one-year point after diagnosis to the five-year point, but is poor at getting them to the one-year point in the first place. That suggests that it is not good at detecting cancer. We lose the vast majority of those 10,000 lives in the early phase—up to one year—and then it is simply not possible to catch up. We therefore need to do more on earlier diagnosis.

Getting the NHS to focus on the one-year figures will encourage initiatives on the frontline to promote earlier diagnosis. By putting the one-year figures up in lights, we can ensure that the local NHS realises that it is being monitored. It will therefore be up to the local NHS to introduce and adapt a range of initiatives that suit the local population best, whether they are elderly people, black and minority ethnic populations or whatever. The initiatives range from everything from encouraging better screening uptakes to encouraging better awareness campaigns when it comes to education, better diagnostics in primary care and better GP referral rates, all or any of which could be approved locally to drive up earlier diagnosis.

I suggest that earlier diagnosis, as well as being better for patients, can also save the NHS money. Incisive Health and Cancer Research UK published a report last year that set out the cost savings of diagnosing a patient early. One example is in colon cancer. Stage 1 treatment costs about £3,300, while stage 4 treatment costs £12,500, which is a notable difference. If we look at the range of cancers and the number of cancer patients involved, we can see that we could save hundreds of millions of pounds if we raised our game and diagnosed cancer early.

The all-party group on cancer and the wider cancer community, including the Cancer Campaigning Group, have worked collaboratively with the Government and NHS England—I congratulate the Government most heartily on listening to our concerns—and have campaigned together to get the one-year figures into the DNA of the NHS. We have managed to get them into the NHS outcomes framework and the commissioning outcomes framework.

Last year, our efforts culminated in a successful campaign to ensure that a one-year cancer survival rate indicator is included in the delivery dashboard of the clinical commissioning group assurance framework from this April. For the moment, that is the primary mechanism by which CCGs are held to account. Many CCGs have told us that it is the primary tool they use for determining priorities at local level. With the one-year figures now up in lights in the top tier of NHS accountability, commissioners will be encouraged to take action in their local area to improve earlier diagnosis and ultimately to improve cancer survival rates.

Many people may think, “Job done. We’ve managed to get the one-year rate into the DNA of the NHS. We’ve managed to get it on the radar screen of CCGs. Is there anything else we should be doing except following through on those initiatives?” However, many of us are concerned that the recently proposed changes to the accountability system in place for CCGs may undermine this work. A few weeks ago, the Secretary of State announced a new scorecard for measuring the performance of CCGs, which will involve each CCG being awarded an Ofsted-style rating with effect from next April. Although the all-party group on cancer approves in principle the improvement of accountability, we strongly advocate, on behalf of the cancer community as a whole, that the use of the one-year figures to drive earlier diagnosis at local level is not lost throughout this process. Will the Minister outline in further detail the Government’s plan to implement a CCG scorecard and the process by which the metrics relating to cancer will be determined? Will he confirm that the focus on one-year survival rates will not be diluted?

Let me mention the reforms suggested in the cancer strategy for the patient pathway. With a growing number of people surviving cancer, it is particularly important that we make improvements throughout the whole cancer pathway, and there are two key parts to that. First, all too often patients report being treated as a set of symptoms rather than as a person, and certain groups of patients—namely older people, ethnic minorities and those with rarer cancers—report a poor patient experience. Secondly, many cancer patients lack the necessary support to get on with their lives once treatment has ended.

The all-party group on cancer welcomes the increased focus on patient experience across the NHS, but we must do more to ensure that we have the right data to drive improvement at local level. Although the cancer patient experience survey is a useful tool, too often the data are difficult to access and not widely used. The cancer strategy recommends the creation of a new metric to measure the patient experience across the whole pathway. Will the Minister set out how the Government plan to implement the strategy’s recommendation on a new patient experience metric, and say how they will ensure that data are used effectively to drive improvement at local level? Will he confirm that there will be sufficient resources for the new metric and the cancer patient experience survey?

We welcome the Government’s commitment to ensuring that all patients have access to a recovery package following their treatment, but if we are fully to address that challenge it is vital that the NHS understands where it is working well and where improvements are needed. As such, it is vital that the strategy for the development of a new quality of life metric is taken forward as a priority. Will the Minister ensure that the Government’s commitment to take forward that recommendation for the cancer strategy to develop a quality of life metric is backed up with clear plans for funding and implementation?

In the few minutes that remain, let me address a couple of key issues including rarer cancers and the cancer drugs fund. It is an interesting fact that the combined number of rarer cancers—those less common than breast, lung, prostate and bowel cancer—outnumber the sum total of those more common cancers. Services for people with rarer cancers are no less important, and we must ensure that people with rarer cancers get access to the right level of specialist expertise, irrespective of where they live. The taskforce recommendation for the creation of highly specialised multi-disciplinary teams for rarer cancers is particularly welcome. Will the Minister assure the House that that will happen, and that MDTs will be supported by technology so that they can deliver specialist care without inconveniencing patients?

Research efforts into rarer cancers must be redoubled. The Government are leading the world in their investment in genomics, most notably through their 100,000 genomes project, which is sequencing the genomes of those with cancer and rare diseases in general. It is good that the project has so far fully sequenced the genomes of 5,000 patients, but will the Minister update the House on progress with cancer patients? May I suggest that, once complete, Genomics England should independently carry that research forward for the benefit of the NHS and patients, given its excellent track record?

[Mark Tami (Alyn and Deeside) (Lab)]

Is the hon. Gentleman as worried as I am that companies that are investing in finding drugs for rarer cancers are, because of their nature, small in number, and they should not be put off investing in research to find cures for those cancers because they feel that the Government—whatever party is in power—will perhaps pull the plug or concentrate only on the more common cancers?

[Mr Baron]

The hon. Gentleman makes an excellent point, and one hopes that there is proper dialogue with all the parties concerned to ensure that what he describes does not happen. The approach to science must be collaborative. Nobody has a monopoly on good ideas, but I suggest that the Government should be congratulated on their ground-breaking 100,000 genomes project, as long as it does not freeze out research in the private sector. I hope that there is dialogue to ensure that that will not happen. If there is not, that issue needs to be raised with the relevant bodies in this place.

On the cancer drugs fund, people living with cancer need the best treatment available. We can all agree to that. Approximately 72,000 cancer patients have benefited from the fund. That testifies to the Government’s commitment. We recognise, however, that reform is needed over the longer term. We need a longer term solution to the cancer drugs fund. The Government apparently also believe that reform is essential. Recent NHS England board papers indicated a continuing overspend on the cancer drugs fund, underlining the fact that a long-term solution is needed now.

When reforms are introduced, it will be important that the spirit of the CDF—that patients are able to gain access to the treatments their doctors recommend—is maintained at a cost that is affordable to the NHS. There have been reports about NHS England refusing to discuss some offers of cost reduction with drug companies due to the rules under which the CDF operates. That needs to be addressed urgently if the overspend is to be tackled. I very much welcome—I am sure everybody else in the House does, too—the news that the CDF consultation opened today, at, I think, 1 o’clock this afternoon. I recommend, as I am sure others do, that all relevant parties participate in this very important consultation. Will the Minister provide assurances that the NHS will be supported in demanding the best possible deal from the drug companies, because that will be an important element of the process?

I want to finish by speaking about the importance of leadership and accountability, both at national and local level. The all-party group on cancer strongly welcomes both the strategy’s recommendation to introduce cancer alliances to drive improvement at a local level, and for the National Cancer Advisory Board to provide accountability at a national level. The National Cancer Advisory Board, in particular, will be important in ensuring accountability for the strategy, and that momentum and focus is retained. It is vital that this body is set up as a priority, so we can monitor progress and implementation from the beginning and set up the right structures to ensure strong accountability. Will the Minister set out how the Government plan to monitor the delivery of the cancer strategy recommendations and to measure their success?

I thank the Minister once again for responding to the debate. I know this is not his usual brief and I would be very happy for him to write to me after the debate if he does not have the answers to all the questions at his fingertips. As ever, there are a number of areas I have not had the chance to cover. Time simply has not allowed it, but I hope they will be covered by other colleagues speaking in this afternoon’s debate.

I want to finish by emphasising the opportunity presented by the new cancer strategy. By implementing its recommendations in full, and by retaining the focus on the one-year survival rates as a means of driving forward and promoting earlier diagnosis, we have the potential to deliver world class outcomes across the entire cancer pathway: to dramatically improve our cancer survival rates, to deliver care tailored to the patient and to ensure that patients are supported. But action must be taken now. Doing nothing is not an option. The challenge, as I highlighted at the beginning, is huge, but in the cancer strategy we have a clear plan for how to make it work. I urge the Government to take action now, to fulfil our manifesto commitment to implement the strategy in full, and to deliver the care, treatment and world class outcomes cancer patients deserve.

[Mark Tami (Alyn and Deeside) (Lab)]

I should start by saying that I am, with the hon. Member for Enfield, Southgate (Mr Burrowes), the joint-chair of the all-party group on stem cell transplantation.

I want to raise a few brief points in respect of the care of blood cancer patients who have had transplants and the ongoing care they receive. It is fair to say that at present the level of support can be described as patchy at best. There is a considerable lack of understanding of some of the issues that transplant patients face.

Anthony Nolan estimates that, by 2020, there will be 16,000 people in the UK living with the long-term effects of a stem cell transplant, and they will have a higher risk of secondary cancers, infections, particularly in the early stages, infertility and problems with muscles and joints. Then there is an area not touched on much: the psychological effects of both the diagnosis of blood cancer and a transplant. Graft-versus-host disease will affect the majority of patients in the early post-transplant period, but it can persist for many years. Some element of the disease is not necessarily a bad thing, because it shows the transplant is working, but if it gets out of hand, it can cause organ failure and a host of other problems that can, and do, kill patients. In the longer term, the effects can be as minor as skin irritation, but, if in the gut, they can lead to more complicated problems, resulting in the patient having to go back into hospital.

As I said, the flare-ups can occur not only in the first few years, but many years down the line, yet a survey of 27 transplant centres in the UK found that while they all provided support for a year post-transplant, only half followed up after five years. Importantly, only 28% offered mental health support. This problem affects not only cancer patients, but a whole host of healthcare issues: we address the physical side of an illness, but then the patient walks out the door without our addressing their mental health needs or asking how they are coping with the diagnosis and other ongoing problems.

Some years ago, I spoke in the Chamber about my son’s experience of having a stem cell transplant. We had to look for support and counselling. Children, particularly younger children, will have questions such as, “Why has this happened to me?” and “Why can’t I run like I used to?”, but we had to ask for that support. It was not necessarily there in the first place or as part of an overall package, as one might have expected.

I said in the Chamber that I was particularly concerned about the lack of support for children going back to school. I believe there are still no national guidelines for how schools should deal not only with returning pupils, but with other, particularly younger, children. How might they feel about seeing a child they have not seen for a while? The last time they saw them they looked like them, but now they might be on steroids or have no hair—a particular issue for girls, although it is not great for anybody. I was concerned about the poor provision and the lack of guidelines. Some schools do it very well, but some show very little understanding. CLIC Sargent has done a lot of work in this area, but we need to do more. We have to look beyond cancer. Cancer is what people are treated for, but there is a host of other issues around it. We need to look at the whole, rather than just the illness itself, and at how we support people after that illness.

We define the transplant period as 30 days prior to and 100 days after the transplant, but this assumes that all patients need the same support and have the same outcomes. It takes very little account of some of the late effects that patients will experience. No patient is the same or will have exactly the same demands, yet there is this idea that we can set an arbitrary period of 100 days, as though at the end of it we can say, “Well, everyone’s fine. We don’t need to give them the same level of support.” However, patients go to their local area and then we are back with this postcode lottery, where some get very good support but some get very little, particularly if people are not exactly sure where they should go to receive support.

I do not think that is particularly fair, so I would like—and I know Anthony Nolan would like—a system that looks a lot further than 100 days and instead looks for support for a five-year period at least. Clearly there will be different requirements within that. Hopefully, some patients will not need a great deal of support, whereas others may need a lot of ongoing support. We need the flexibility to respond to that, rather than taking a one-size-fits-all approach.

We need to do more on ongoing support, and we should not forget either that stem cell transplants are now evolving—they are a lot more common than they were—and it is not just blood cancers we are looking at. Through the work of the all-party group on stem cell transplantation, I know that this is an area that offers us a great opportunity. Equally, we cannot ignore the fact that 50% of transplant patients die within the first two years, so there is a lot of work we need to do—generally, it is not the transplant that kills them, but some of the associated problems and immunity issues.

Finally, let me say to the Minister that we need to look more broadly at how we support transplant patients, get beyond this arbitrary figure of 100 days, and support people with the physical illness but also, very importantly, with adjusting to some of the psychological issues that can arise.

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[Mark Tami]

Does the Minister agree we should be talking about people living with cancer and the associated issues? A lot of people talk about “a cure” as if everything goes back to how it was before the diagnosis.

[Ben Gummer]

We should indeed. I found the hon. Gentleman’s remarks extremely interesting; I learned a lot from them.

I want to answer hon. Members’ questions as well as I can, although I am conscious that I am answering them on behalf of the public health Minister, who has responsibility for cancer and has considerable expertise in this area. She is sorry she cannot be here. My hon. Friend the Member for Basildon and Billericay (Mr Baron) asked some salient questions. The first was: when will the taskforce conclusions be implemented? He will know that the new national director for cancer has just been appointed, and I met her yesterday. As he knows, she is an immensely impressive women, having run one of the foremost cancer institutes in the world, and she is aware that one of her initial tasks is rapidly to set out an implementation plan. In doing that, I know she will want to speak to the all-party group on cancer as soon as she develops her plans in order to keep its members abreast of developments and to hear their views about the pace of implementation. I will ensure that officials write to Members with any further details about implementation.

My hon. Friend asked about the CCG scorecards. I understand the nervousness—I detected it in his voice—about the complex measurements and the dashboard being translated into apparently simple measurements in the scorecard. I want to give him some reassurance. The scorecards used for hospitals are immensely complex and have behind them a huge amount of data that are then distilled into simple scorings, the point of which is to provide clear accountability and transparency to patients and people living in CCG areas, who, at the moment, have no grip, because we do not give them any, on how well a CCG is performing. The expert panel looking at the operation of the scorecards will be out for consultation next month and will report back before the scorecards are put in place in April. I know it will listen carefully to his comments about one-year survival rates and the detail of how the scorecards are put together, but I am clear that the oncological experts on the panel will not want to undermine the work done on the various metrics and the dashboard.

My hon. Friend spoke with eloquence about genomics. It is of course true that the reason we are able to make increasingly rapid progress is that cancer is a genetic disease, and genetics and genomics are the great new frontier in medical innovation. In a sense, therefore, dealing with cancer and drugs for cancer will be the tip of the spear when it comes to developing all new drugs in the decades ahead. It is very exciting, but presents massive challenges to funded healthcare systems around the world. It is in trying to find a way of affording the new drugs that are coming online, but also releasing the unique possibilities that the NHS offers, that we think we are in such a strong position to offer opportunities both to those wanting to research cancer from an academic point of view and to those businesses and companies doing so in order to develop drugs.

The point of saying that is that the cancer drugs fund, which many Members referred to in their speeches, will necessarily have to change in response to the significant changes of the last few years. To the shadow Minister’s point about the cancer drugs fund, I would gently say that it was an innovation personally promoted by the Prime Minister in 2010. He has made a personal commitment to it, so all Members should take solace from the fact that he will be watching carefully how the fund develops. It has risen from a few hundred million pounds to over £1.2 billion. That demonstrates a commitment that was not present before the cancer drugs fund was invented. Its size is such that it now makes up a considerable part of the overall drugs spending of the NHS.

I hope hon. Members will take comfort from the fact that the consultation announced today by NHS England aims to build on the success of the cancer drugs fund, to incorporate the new structures that need to come about as a result of the significant changes in genomic research over the last five years and to align the general research, licensing and funding of drugs through NICE with the principles of the cancer drugs fund, so that we have a far more integrated system in future. I would encourage all hon. Members present to contribute to the consultation on the cancer drugs fund and thereby help to inform the second stage of its existence, when that comes about—I imagine at some point next year.

Cancer Drugs

Mark Tami Excerpts

Tuesday 20th October 2015 Westminster Hall

[Mark Tami (Alyn and Deeside) (Lab)]

My hon. Friend has outlined all the hoops that people have to leap through. If their timing is wrong, they may or more likely may not qualify for the drug. That is happening when patients are at their weakest. They are not experts, and they find themselves victims of what can appear to be a very cruel and harsh system.

[Nic Dakin]

My hon. Friend is right that patients and their families are at a critical point, which is why it is important that, on this difficult issue, we try our best to find a way forward that is sensitive to the need for such exceptional drugs in exceptional circumstances. In many ways, the Government should be praised for introducing the cancer drugs fund, but the CDF is clearly not fit for purpose when dealing with such exceptional situations, which is what is needed.

Other countries across the world are taking a leap forward in approving Abraxane for their health systems. Abraxane has been approved on price grounds for reimbursement in Austria, Denmark, Germany and Greece, and it has been given the go-ahead in the USA, Canada and Australia. There is a real danger that patients in the UK will be left behind unless they happen to be in Scotland. Removing access to Abraxane could mean that fewer patients can access trials. Moreover, we could be setting back research into a disease that for many years has had the worst survival rates of the most common cancers. This is an opportunity for a breakthrough in medical research that needs to be taken

I ask two things of the Minister, who goes about his work in an assiduous and effective way. First, can he take steps to examine the processes that NICE and the CDF use to consider drugs so that they take into account the exceptional circumstances surrounding drugs of this nature in areas where there has been no medical process or medical hope for many years? Secondly, will he meet me and the other officers of the all-party group on pancreatic cancer to explore the specific issues around Abraxane?

Adult Stem Cells and Life Sciences

Mark Tami Excerpts

Tuesday 15th September 2015 Commons Chamber

[Mr Burrowes]

I do, and I want to look at the long-term outcomes.

My co-chair on the all-party group on stem cell transplantation, the hon. Member for Alyn and Deeside (Mark Tami), is present, and our group has been looking at some of the outcomes of research. Last year we joined together with the all-party group on medical research and heard from a number of experts, not least Dr Rob Buckle, director of the UK Regenerative Medicine Platform. He said that the major challenge which remains is translating the basic science into the clinic. He said that we are still at least 10 to 15 years off routine clinical use of stem cells.

[Mark Tami (Alyn and Deeside) (Lab)]

The hon. Gentleman has touched on some of the late effects of transplantation, and the fact that we are getting patients with late effects proves that people are living longer, but we need to put more money into research and into looking at these problems, to ensure that patients live as normal a life as possible.

[Mr Burrowes]

The hon. Gentleman and I have for a number of years been party to reports recommending to Government that we need to invest in research to provide better long-term outcomes in transplantation and future therapeutic treatments.

One key area is Alzheimer’s, and some of us may have received a briefing from the Alzheimer’s Society. We know from our constituencies the huge impact of Alzheimer’s. There are 850,000 people living with dementia in the UK today, and this is forecast to rise to over 1 million by 2025 and to exceed 2 million by 2050. A technique was developed in 2012 to turn adult cells into nerve cells, which again highlights the curative potential of stem cell transplantation. That can be particularly helpful in understanding and testing potential treatments for Alzheimer’s.

The Minister will know that the estimated cost of Alzheimer’s is a staggering £4.3 billion, which is approximately 3.4% of total NHS spending in the UK in 2013. Observing the initial stages of Alzheimer’s in nerve cells can give scientists clues to help them identify genetic risk factors. It can also be used to test potential treatments to see whether the damage from Alzheimer’s can be stopped. We are a long way from that, but it is an illustration of how important it is for us to carry out further research into adult stem cell transplantation. Indeed, it is vital; it makes economic sense and will save lives.

I wish to focus on my involvement with the all-party group on stem cell transplantation and to highlight the potential of cord blood donations to transform our ability to meet the needs of every patient who requires a stem cell transplant, including black, Asian and minority ethnic patients, who have suffered from such poor transplantation outcomes. It is a scandal that, in 2010, just 40% of BAME patients were able to find a well-matched stem cell donor. That figure has increased now to 60%, which is really welcome, and the Government can take plaudits for that. The £4 million that was pledged in 2013 and the total investment of more than £12 million since 2011, along with all the investment from the charitable sector, have made a difference, but we still face a situation in which four in 10 people from the black, Asian and minority ethnic community are unlikely to find a match, which is not good enough. We must do more, and I urge the Minister to support continued and sustained investment as we approach the next spending review.

We need to focus on the outcomes. Of the 6,200 patients who will receive a stem cell donation between now and 2020, one in three will not survive their first year after transplant. Of those who do survive their first year, many will suffer a number of post-transplant complications, including relapse, infection and graft versus host disease.

Since 1993, the collection of stem cells from cord blood and bone marrow has increased at impressive rates, meeting the needs of many patients in the UK. Over the past three years, we have seen progress in a number of areas. Cord banking rates have tripled, a quarter of all cord transplants in the UK are now sourced domestically, and the cost of transplants to the NHS has decreased dramatically. But the urgent need for improvements in long-term outcomes remains. In order to make the necessary progress, the UK needs to ensure that the early-stage advancements are sustainable by investing in long-term research, which is the focus of this debate, identifying improvements to treatments and developing potentially new life-saving therapies. So what needs to be done?

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[Mr Burrowes]

I agree with the hon. Gentleman on many of these issues. Progress has been made on collection rates, particularly among the black, Asian and minority ethnic communities, but we need to find better ways to do this. As I said, one in four people are unable to find a match. My hon. Friend the Member for Salisbury (John Glen) is himself a donor, and he can speak for himself on this. I know that others present in the Chamber have family members whose lives have been saved by people donating. I want to send out a message from the debate tonight for people to donate and to be part of the registry, so that they can help to save lives.

[Mark Tami]

This is not just about finding a match. We also have to think about the quality of the match. Everyone would like to see a 10 out of 10 success rate, but as a result of technological advances, lesser matches can now be used to help to save lives, even though they are not ideal.

[Mr Burrowes]

Absolutely; I welcome that point. We are not talking simply about increasing capacity all over the place. We must remain focused, particularly on the black, Asian and minority ethnic communities, to give them greater opportunities. We must also focus on quality and on the long-term outcomes. When a match is found, we must ensure that the transplantation happens and that there are no barriers to a good long-term outcome. We need further research if we are to achieve that.

Professor Craddock has estimated that the network will need £3.4 million of funding over four years. It is not going to be cheap, but there is a great return in terms of lives saved and good health outcomes. The lack of investment in this industry is a reflection on some of the uncertainty about the way in which we should go forward, but Professor Craddock’s approach is a trailblazing way forward.

The call to the Minister is to follow what is said in our report “Cord blood transplantation: meeting the unmet demand”. We made a specific recommendation to the Government to establish a national stem cell transplantation trials network to facilitate and promote high-quality research into cord blood as a curative therapy for patients with blood cancer and blood disorders. He will know that that is very much in line with the Government’s current strategy to develop the life sciences industry in the UK, as stated in the 2012 life sciences update. It says:

“We recognise the importance of empowering patients to participate in clinical research, and have set up the Clinical Trials Gateway, with associated mobile applications”.

We have yet to receive the Government’s formal agreement to support the all-party group’s recommendation, and I look forward to the Minister saying today that he agrees with it. I hope that he joins with the broad support from across the transplant community of well-organised stakeholders in the field who are looking to the Government to provide that lead, support and engagement, to make the UK a world leader in transplantation, research and life sciences—and that will need resources. I also ask that he meets the Anthony Nolan trust and other stakeholders to discuss this issue of research and long-term health outcomes, and the recommendation of the all-party group. We would be happy to welcome him to discuss all those things at our next all-party group meeting.

Drugs: Ultra-rare Diseases

Mark Tami Excerpts

Tuesday 16th June 2015 Westminster Hall

[Greg Mulholland]

The hon. Gentleman is right to say there are other such conditions. I will not be able to mention them all today, but other Members may wish to do so. I will concentrate on the three conditions that I have been working on: Morquio, Duchenne and tuberous sclerosis. Some 180 people suffer from those conditions. I am sorry to say that all those people and their families have been hugely let down by the repeated failure of process by NHS England and by the thick wall of bureaucracy and utter lack of accountability.

[Mark Tami (Alyn and Deeside) (Lab)]

Like the hon. Gentleman, I have been involved in the issue of Morquio. The correspondence that we have had seems to want to blame the company; the company says it has not had the information; and patients suffer. This matter has been drawn out, and we now have the news from NICE.

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[Greg Mulholland]

I thank the hon. Gentleman for his contribution. I am sure the Minister will want to consider that in his drive for an appropriate system.

After NHS England suspended the use of the scorecard on 2 December, a meeting of the NHS England clinical priorities advisory group on 15 December was called off. That is when we started campaigning for an interim process while NHS England went back to the drawing board. NHS England refused to do that, which I am sorry to say left all these families in the dark, with no idea what would happen next or in what timescale. NHS England then launched a consultation on 27 January, with a new process for deciding which drugs to fund that closed on 27 April. We still have not heard the decision. We have been told that there may be a decision on 25 June, although that has not been confirmed in writing. I hope that the Minister will give confirmation today.

Linked to that are the recent NICE recommendations, and particularly those on Vimizim. Even though we were clearly told by NHS England that its decision on 25 June would not be dependent on NICE, it now says that it will not approve Vimizim because NICE will not do so in the short term. The whole thing is a fiasco and an embarrassment. I understand the Minister’s argument that we cannot have political interference. However, the Secretary of State for Health made clear when he appeared before the Public Administration Committee in the previous Parliament that he accepts that the buck stops with him. When things are wrong and when bureaucrats are failing, it comes to his desk and to the Life Sciences Minister’s desk. I urge the Minister to take that up.

I pay tribute to the MPS Society for its amazing campaigning, and particularly to the chief executive Christine Lavery, whose son Simon had Morquio and died in 1982 aged just seven. Her passion and her colleagues’ passion have inspired me and others, and we will continue to work with them. The enzyme replacement therapy produced by BioMarin, Vimizim, is currently supplied on a free trial by BioMarin to 34 patients around the country out of a total of 88 patients, so more people with Morquio are not getting Vimizim than are.

The list price for Vimizim is £395,000 per person per year. In October, BioMarin proposed a fixed-term arrangement with NHS England to supply the drug at a lower price for a number of years. After BioMarin’s offer in October, NHS England did not even reply, despite repeated follow-ups, forcing BioMarin to announce in February that it would cease to supply the drug after 11 May; that date was then extended to 25 June. Having heard nothing, BioMarin said that it would have to withdraw the drug.

[Mark Tami]

Gracie Mellalieu in my constituency, fortunately being in Wales, will get the drug until October, but there is still that cut-off point. Is the hon. Gentleman amazed, as I was, at the total lack of engagement from NHS England, even when that offer was made?

[Greg Mulholland]

It is absolutely disgraceful and I urge the Minister to properly take that up. We have not had answers or justifications, although there can be no justification for NHS England behaving in that way. NICE’s decision not to recommend approving Vimizim in the short term has already been deemed to be flawed by those involved, including the MPS Society and clinicians, because it fails to consider BioMarin’s offer and has assumed that the cost of the drug will be the original £395,000. How has that happened? NICE also took months to put together the interim guidance, but has given only until next Tuesday to receive the extra evidence that it has asked for. Surely that is an unfair timeline for response.

As of 28 April 2015—which, incidentally, is a year after Vimizim was approved by the European Medicines Agency, meaning that it is approved in 20 European countries, including France, Germany and the Czech Republic—the drug was still not available in the UK, because NHS England has failed to put in place arrangements for funding it. Does the Minister not share the sense of frustration, anger and disbelief that the NHS refuses to fund the drug when so many of our neighbours do? More fundamentally, Earl Howe gave patients an assurance that their access to the drugs that they need would not depend on the cost per quality-adjusted life year measure. Can the Minister tell us why his Department has gone back on that assurance? That is exactly what it appears to have done.

I appreciate that the Minister has taken the time to meet us, but I remind him of the 11-page letter that he asked the organisations to send him some 11 weeks ago. We expected him to respond to that, as it was a complaint about NHS England’s handling of the matter, yet he simply passed it on for NHS England to respond to. That is not what we asked him to do, and the response does not address the points that we made to him, at his request, about how NHS England has failed people. I ask him again to reply directly and properly, and to investigate the mishandling of the situation by NHS England.

Duchenne muscular dystrophy has been mentioned. Again, I highlight the campaigning of organisations such as Muscular Dystrophy UK, Joining Jack, Action Duchenne, the Duchenne Family Support Group, the Duchenne Children’s Trust, Alex’s Wish and the Harrisons Fund. Those groups share the MPS Society’s frustration at the process. As many hon. Members know, Duchenne muscular dystrophy is a condition affecting only boys, and numerous potential treatments are in late clinical trial. Translarna, in particular, received conditional approval funding in the EU in August 2014. This clearly effective drug is being funded in a number of countries, including Greece, even given its economic situation, yet we are still no closer to hearing whether it will be funded here. I hope to hear positive news on that drug today.

I pay tribute to the Tuberous Sclerosis Association and the work of Jayne Spink and her colleagues. For those who do not know, tuberous sclerosis is a condition that causes the growth of tumours in organs, including the brain, eyes, heart, kidneys, skin and lungs, and a range of associated health problems, including epilepsy, learning difficulties and behavioural problems. The drug everolimus has been found to be effective in shrinking the tumours, extending life and improving quality of life, but although it was licensed for use in patients with tuberous sclerosis in February 2013, NHS England has failed to draw up a prescribing policy. At least two people have already died since the drug was licensed; Chris Kingswood, a consultant nephrologist, said that Julie Brooker’s death in January 2013 was “absolutely preventable” if she had been given access to everolimus.