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The diseases we are considering may be rare, but collectively they affect the lives of 3 million people across the United Kingdom. That emphasises that everything must be done to create a comprehensive initiative for providing care to those affected by these difficult and challenging diseases.

Rare diseases tend to be life-threatening or chronically debilitating. There are between 6,000 and 8,000 rare diseases. Each one affects less than 0.1% of the UK’s population, but Rare Disease UK calculates that 75% of these illnesses affect children.

We are here today on behalf of our constituents, but we are also focusing very much on young people across the United Kingdom of Great Britain and Northern Ireland who have these problems.

The ultra-rare diseases that have been mentioned include Morquio disease, Duchenne muscular dystrophy and tuberous sclerosis. I would also add Prader-Willi syndrome, which some of my constituents suffer from.

The chance of improving people’s quality of life depends very much on a narrow timescale. It requires quick diagnosis, treatment and drug provision, so that drugs can be accessed when they are proven to be most effective. In other words, as every Member who has spoken has said, time is of the essence—the people who are suffering need help now, not in six or 12 months. It is our duty to make that timeline as transparent and effective as possible within the finite resources we have, and I understand the problems the Minister has. There must be adequate assistance for practitioners, to allow for timely diagnosis and the timely provision of drugs and treatment.

Mr Anderson: The hon. Gentleman has been very consistent on this issue, and he is right: as those of us in the all-party group on muscular dystrophy have found, one of the main reasons for delays is that clinicians—particularly GPs—do not see these diseases very often, and when they do, they are sometimes lost as to where to go. Once a disease is diagnosed, the people suffering from it should have no worse access to treatment than people with much more common diseases—surely that is the issue that has to be addressed. Once a disease is identified, we have to get to grips with it, and people have to get the medication and the support they need, so that they can get on and live the best life they can.

Jim Shannon: I agree wholeheartedly. I am sure the Minister has heard us all say that time is of the essence and that we should strike right away. That is what we are about.

The health and social care professionals involved in the diagnosis, treatment and care of these patients face difficult tasks. As I was saying, there must be adequate assistance for them, to allow for timely diagnosis and the timely provision of drugs and treatment. There also needs to be sufficient funding UK-wide.

In Adjournment debates and other debates about these issues, I have always referred to Queen’s University in Belfast and to the importance of research and development. Queen’s University is one of the universities that do research, and it works in conjunction with the Health Department. Perhaps the Minister could therefore give us some idea what the Government are doing on research and development to ensure that new drugs are found.

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David Simpson (Upper Bann) (DUP): My hon. Friend mentions research. As he will know, I am involved in a campaign in Northern Ireland and across the United Kingdom on complex regional pain syndrome. The condition affects children, but it mostly affects adults from the age of 50 onwards, and people can lose limbs to it. One in every 3,000 people is affected, and many lives have been destroyed. We need more research to find a drug to cure this condition, and research funding needs to be put in place so that that research can be done.

Jim Shannon: I thank my hon. Friend for his intervention. That is a message that I, too, believe in, and I am sure the Minister will respond positively.

Leaving aside all the statistics we have heard today, we need to imagine the emotional strain these things put on people and their families, and we have had examples of that. Only 35% of patients are aware of a licensed treatment for their condition. There is something wrong when that is the case. How come only 35% of people know there is something there for them? How are the Government addressing that? I am not attacking the Minister—that is not how I work—but how do we move things forward in a positive fashion? Of that 35%, 89% are able to access the treatment, but 11% are not. Therefore, 65% of people are not aware of the drugs, and of the 35% who are, a proportion are not able to get them.

Like others, I want now to touch on Duchenne muscular dystrophy. If Translarna is given at the correct time, we can prolong the sufferer’s mobility. My constituents deserve to have access to that drug as soon as possible, and that is what I would like to see happen. The effects of long waiting times and uncertainty are widespread, and although ultra-rare diseases affect the few, their effects for those who suffer from them are an inescapable reality and should be treated with the utmost seriousness.

Families deserve a solution to the continual failure to establish a lawful, robust and transparent commissioning service that enables the rare disease community to access new drugs in an equitable and timely manner and to avoid situations such as those we have spoken about, where crucial windows of opportunity pass by. This is a crisis—it cannot be described as anything else. People are in trouble, and they need our help now.

Let me quickly pay tribute to the lady who looks after the Northern Ireland Rare Disease Partnership, Christine Collins. Last year, we met the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison), to discuss these matters. We were clearly moving forward, and the Minister was very responsive. The background information for the debate says that, in November 2013, the UK Department of Health and the devolved Governments published the UK strategy for rare diseases. In June 2014, the Northern Ireland Assembly endorsed it and gave a commitment to publish an implementation plan, and last year’s meeting provided an opportunity to underline the need for that to happen. Perhaps the Minister can give us some idea today of what discussions he has had with his fellow Minister to move things forward so that we can deliver on that commitment.

The debate has dealt with access to drugs. It has also given us an opportunity to bring out the gaps in the patient experience. Let us remember the patients, the families, the children and all those who suffer. They

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require a co-ordinated response from not only the health service and the social services, but research bodies and the relevant charities. I hope that the common experiences we have described signal the urgent need for access to these vital treatments. I remind all those in a position to have a tangible impact on drug access that while we are debating these issues, somebody else is falling into the trap and will, unfortunately, be unable to access the necessary drugs. I urge the Minister to respond positively, and I thank the hon. Member for Leeds North West again for giving us all a chance to speak about this issue.

Several hon. Members rose

Mr David Crausby (in the Chair): Order. I intend to call the three Front Benchers at 3.30 pm. Three Members are standing, so if they can keep their contributions to less than four minutes, they will all get in.

3.17 pm

Mrs Cheryl Gillan (Chesham and Amersham) (Con): I pay tribute to the hon. Member for Leeds North West (Greg Mulholland) for raising this issue and for his untiring work. I agree with my hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) and the hon. Member for Strangford (Jim Shannon), who made many of the points I hoped to make.

I am grateful to have a short time to raise the case of my constituent Archie Hill and his parents’ tireless campaigning to get access to Translarna for him. It is inspirational to see how this family, and many others, have campaigned for their children. I can imagine nothing worse than watching one’s child slowly lose their mobility, knowing that their life expectancy will not be as great as ours might be.

Translarna is available in other European countries. As we have heard, it is available in Greece, which is not in the best economic health. Only recently, in Germany, the Federal Joint Committee determined that it provides a benefit for ambulatory patients aged five years and above with the nonsense mutation. The rise in the PTC Therapeutics share price on the back of that announcement shows that the company is well placed, and its drug is being recognised right around the world.

There is an irony here. If the decision coming down the track goes against making Translarna available to the patients who deserve it so much, the question arises as to whether this is about cost. The decision will almost definitely be made on a cost basis. Day by day, I see millions being spent in my constituency on High Speed 2 when we cannot spend £150,000 to keep a 10-year-old boy ambulatory and enjoying his life. We must question where a Government’s priorities are, when there are such people in front of us and we see the pie-in-the-sky projects that Governments of all complexions sometimes choose to pursue.

The point I really want to make is that if the decision is against providing the drug—bear in mind the failed processes that it has gone through—the Government have a golden opportunity to rescue the dish from the fire. I do not think it will necessarily fall out of the frying pan. On 8 July the Chancellor of the Exchequer will deliver his emergency Budget. We have previously created a cancer drugs fund, so that expensive drugs could be available to save lives. Will the Minister have

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conversations with the Treasury to see whether the Chancellor will on 8 July announce an access fund for drugs for rare conditions? If Translarna was one of the drugs on the list, it would be available in time for Archie Hill and the other children we have heard about today. To me, the awful thing is that time is running out. I do not think that letting time run out for those children would be the mark of a civilised Government, when the cost involved is small compared with some other expenditures that Governments make.

3.21 pm

Ben Howlett (Bath) (Con): I add my congratulations to those that have been offered to the hon. Member for Leeds North West (Greg Mulholland) on tabling the debate. His passion and commitment on the subject are second to few.

Last week in Bath I met an incredibly impressive constituent of mine named Sarah Long. Many hon. Members will already know of her from the Twitter debate yesterday. She met me to discuss the benefits that she has received from Vimizim, the enzyme replacement therapy to address the cause of Morquio A. She is estimated to be one of just 88 people in the UK who need the drug. While she has been on Vimizim she has experienced dramatic changes, which have become gradually more apparent. She told me that since being on the drug her ability to use her lungs has been transformed. Before she started treatment she needed almost constant access to oxygen, and today she needs just four hours of nebulising. Pre-Vimizim, Sarah found it difficult to talk, but Vimizim has given her voice back to her. The idea of a return to the former days obviously fills her with dread.

Following recent conversations with the MPS Society, the National Institute for Health and Care Excellence announced on 4 June that it is leaning towards not recommending Vimizim for treating people with MPS IVA, or Morquio. That is only a preliminary recommendation and is not its final guidance; the decision may change after consultation. I hope in the interests of my constituent that it will change. I request my hon. Friend the Minister to lean heavily on NHS England before 25 June as it decides about reimbursement with respect to Vimizim on an interim basis, while NICE completes its decision making.

The date of 25 June is critical, as hon. Members have said. If NHS England announces a positive decision, all those who want treatment and who meet the criteria will be allowed access to treatment, regardless of whether they were on the clinical trial. If NHS England follows NICE’s current position and the decision is negative, BioMarin will immediately withdraw compassionate use from those in England who are receiving treatment.

As hon. Members will know, MPS can lead to reduced life expectancy. However, Sarah is in her forties. We have heard an awful lot in the debate about treatments that support young people, but Vimizim also supports adults, if they manage to get to such an age. If NICE gathered more evidence from people such as Sarah, the Minister would see that Vimizim has worked for her and for and others. The real injustice is that her quality of life has dramatically improved, but it appears that NICE is unable to conduct a peer review because of the lack of cases. I hope that the Minister will be able to look into that Catch-22 case.

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Being on the drug has dramatically reduced the cost of my constituent’s care, because the amount of time on oxygen has fallen. That is also an obvious cost reduction to the taxpayer. NICE clearly needs to acknowledge the significance of clinical expertise in its processes, and to address its current expertise shortfalls to prevent other constituents with a rare disease from having to suffer the same problems. However, if a further extension to Vimizim is granted, it must be available to all ages and not just children.

I am delighted that the Government have published a strategy for rare diseases, but a strategy is only as good as its implementation. The strategy highlights a commitment to protecting patients with rare diseases and emphasises the need to improve and deliver effective interventions quickly, equitably and sustainably. I hope the strategy will put my constituent in a good place. I am pleased that the Government are leading the way on scientific and pharmaceutical research, but what good are those things if they do not reach those who most need them? The rare diseases strategy is excellent, but will the Minister provide the House with an update on an ultra-rare disease strategy? I would be most grateful if he were to have the time to meet my constituent in the coming days, given the urgency of the matter.

3.25 pm

Andrea Jenkyns (Morley and Outwood) (Con): I thank and commend the hon. Member for Leeds North West (Greg Mulholland) for his work.

I find it heartbreaking that we have today heard about many constituents who have had access to drugs that have given them hope and improved their lives but which have then been taken away. Like the hon. Member for Leeds North West, I have a constituent who suffers from Morquio, Angela Paton. She is 35 years old; it has taken 35 years to find a drug that works, and it is now being taken away from her. Matthew Firth is another constituent, a young man with special needs who can no longer get a basic cream that he needs.

The case of Abi Longfellow is much in the news at the moment. She is a 12-year-old girl with a rare form of dense deposit disease. She needs a kidney transplant to live. Her father has been prepared in the past 12 months to give her his kidney. He should have had the operation on Friday, but for that to go ahead she needs the drug eculizumab. NHS England and NICE say that the drug will not work in Abi’s case—she has a very rare form of DDD—but there is research from the US, Canada and Italy indicating that the drug does work.

I thank the Prime Minister for intervening and asking NHS England to examine the case, and I ask my hon. Friend the Minister to ensure that that happens. There is research available; I find it difficult to understand whether, when the likes of NHS England and NICE say the drug will not work, that is just a tick-box exercise, or whether they look at research from outside this country. It is important to consider that. I would like a joined-up approach between NICE, NHS England and the Department of Health. I ask the Minister to consider the matter comprehensively, and to ensure that NHS England and NICE look into it.

Mr David Crausby (in the Chair): I will now call the Front-Bench Members; there may be a vote, in which case I shall suspend the sitting for 15 minutes.

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The new rules allow Mr Mulholland to wind up the debate briefly, if there is time, but for that to happen, the Minister must be allowed enough time.

3.28 pm

Dr Philippa Whitford (Central Ayrshire) (SNP): I was a breast cancer surgeon for more than 30 years, and I often experienced the situation that has been described in the debate with my patients and new cancer drugs. We were turned down for Kadcyla earlier this year. With cancer, it is often end-of-life research that later translates to early treatment research. People read things in the paper and say, “Oh, £90,000 for six months of life—that doesn’t make sense.” Inevitably, however, those drugs move forward. We have a different system in Scotland, and while listening to the debate I have been struck by how what is required is a system that is open and can be approached, and which looks from all angles.

In Scotland, the Scottish Medicines Consortium considers drugs as NICE does, and it considers worldwide evidence. It will work up a drug in detail. The balance for us seems to be slightly more on effectiveness than cost, although obviously cost is part of it. Our impression is that, for NICE, cost would sometimes be a bigger component. They are both looking at cost-effectiveness, and we all know there is not an infinite pot of money.

What has changed in our system over the last year is that we have combined our cancer drugs fund with our rare diseases drug fund and simply called it the new drugs fund. The amount in the fund has been quadrupled from £20 million to £80 million, which means that in any year it is a little more flexible in responding to demand, whether that is for drugs for rare diseases or for a new cancer drug. NICE only assesses three drugs a year, so rare drugs are never going to get that work-up. They need a separate system. In Scotland, we have pathways to follow for rare diseases and ultra-diseases.

The biggest change in Scotland in the last year is patient and clinician evaluation. If the evidence for a drug is so strong that it will go through on the nod and there is not an issue, that is fine and PACE is not engendered; but if things look more finely balanced or the drug will not go through, patient groups or drug companies can request a PACE assessment. That will involve expert clinicians, patients and patient groups, and allows people to get slightly outside the numbers and talk about life change, quality of life and money saved in respect of other aspects of the NHS—things that perhaps do not appear in a research paper. That is what is required: a system.

At the end of the day, the system will not produce a favourable result for every single person and every single new drug in the world, but it has to be fair. We cannot have things not being looked at properly, or individual requests being used as the main way of accessing a drug. The system I am talking about is meant to be a transition—supporting young people, for example, who have been on a trial, by giving them access on a compassionate basis, while we get through the paperwork prior to a drug being accepted. It cannot be left as the main method.

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Jonathan Edwards (Carmarthen East and Dinefwr) (PC): That system sounds excellent. I commend the Scottish Government on their work. That could be a great help to my constituent, Mr Trystan James, who suffers from tuberous sclerosis complex and is reliant on a clinical trial drug to deal with a life-threatening tumour. Of course, his drug prescription is therefore completely at the discretion of the drugs company and his family are going from one prescription to the next. That relates to what the hon. Member for Strangford (Jim Shannon) said about emotional pressure on families. I commend the Scottish Government on their work.

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.

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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.

Jim Shannon: There is a forum and association, driven by the Health Minister, that discusses matters together with the three regions. A UK-wide strategy is already in place. The process is allowing that to happen already. However, it is delayed and has not happened yet; that is why we are concerned.

Dr Whitford: I think it is a matter of what ideas go on the table and what is being discussed in the meetings. Good ideas are going ahead. I commend the idea of including patients and clinicians in evaluations, because the numerical data from trials will often be small due to the nature of the diseases in question, and we will have to look wider. The problem for children is that if these drugs are to prevent deformity, they have to be got in early. People with Morquio already have the changes. We do not know yet how much change could be prevented, or how much saving there could be on a person’s disability in the long term if metastatic breast cancer treatments, which eventually become adjuvant treatments, are given earlier.

I commend the system I have talked about. I know it is difficult and challenging, but it is clearly fair, with an interim period for compassionate reasons, and people know where their voice should be heard.

3.37 pm

Luciana Berger (Liverpool, Wavertree) (Lab/Co-op): It is, as ever, a pleasure to speak under your chairmanship, Mr Crausby. I, too, commend the hon. Member for Leeds North West (Greg Mulholland) on securing this important debate on access to medicines for ultra-rare diseases and on his contribution to this debate. He has pursued the issue doggedly through debates and questions, and it is right that he has been allotted time to bring these matters to the attention of the Government today.

I commend the UK parliamentary outreach team for hosting the online debate on this issue yesterday on Twitter, using #RDdebate. The public have had an opportunity to contribute to and inform this debate, and that is valuable. I am aware that many are watching us this afternoon. I also welcome the Minister.

When viewed collectively, it is more than apparent that rare diseases are simply not that rare. One in 17 people will be affected by a rare disease at some point in their life, which means that some 3.5 million people in the UK have a rare disease. About 75% of rare diseases affect children and almost one in three rare disease patients will die before their fifth birthday. These are sobering statistics and it is clear that more must be done.

In June 2009, the previous Labour Government adopted the Council of the European Union’s recommendation on action in the field of rare diseases, which recommended that member states should establish and implement plans or strategies for rare diseases. Following the work set out under the Labour Government, the coalition

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published the UK strategy in November 2013, and NHS England published its statement of intent with regard to the UK strategy in February last year. Since then, we have had the five-year forward view, which reaffirms NHS England’s commitment to achieving better outcomes for people with rare diseases. While each of the publications is a step in the right direction, so much more needs to be done, as many have said this afternoon. The health reforms of the Health and Social Care Act 2012, which was introduced by the coalition, have seen patients and professionals left to navigate a labyrinth to access particular medicines that in many cases have already been approved and received licences.

We have heard already about tuberous sclerosis complex. It is a rare genetic condition that is estimated to affect 1 million people worldwide. Those with the condition develop non-cancerous tumours, often in the brain, eyes, heart, kidney, skin and lungs. Often, TSC patients are at risk of complications, and surgical removal of the tumours is not always an option. It can have a massive and often severe impact on a person’s quality of life. We have heard about a drug called Everolimus that has been developed to treat some tumours associated with TSC; it has been granted market authorisation by the European Medicines Agency. However, despite being licensed in the UK 28 months ago, it has not been appraised by NICE. It is only available through the NHS on an individual basis or through the cancer drugs fund, resulting in significant inequalities in patient access.

Another example we have heard about throughout this debate, and on other occasions in recent weeks in the House, is Duchenne muscular dystrophy, which leaves many patients wheelchair-dependent by the age of 12. The drug Translarna received conditional approval in the EU in August 2014 for the treatment of DMD. However, almost a year on, too many boys who could benefit are still awaiting a decision on funding from NHS England. I commend my hon. Friend the Member for North Tyneside (Mary Glindon), who has done so much to raise awareness of the issue on behalf of her constituents. As we have heard, many Members from all parts of the House also have constituents who are affected, and the hon. Member for Romsey and Southampton North (Caroline Nokes) made a passionate contribution. Each day of delay sees the boys come closer to losing the ability to walk, by which point they would no longer be eligible for the drug.

Countries across Europe have already approved the drug. The UK has taken a leading role in clinical trials for Translarna, but we are lagging behind other European countries in the delivery of the drug to patients. Will the Minister tell us why we have fallen so far behind? I understand that NHS England is set to take a decision on funding shortly. We often hear the word “shortly”, so will he provide a further update and clarify and qualify what “shortly” actually means?

The system to approve prescription is confusing and frankly chaotic. There are seven pathways through which drugs for rare diseases can be evaluated and made available to patients. I will not go through every one of them, but it is clear that there is no clarity in the process to decide on which pathway a particular drug will be put. In particular, owing to a lack of clarity and transparency in the process, information on how or why one medicine evaluation approach or access route is selected over another is simply not available. Will the Minister outline

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the steps the Government will take to clarify the process, to speed up decisions and to make those decisions more open, so that patients can better understand the process?

I have specific questions for the Minister on two of the pathways: the highly specialised technology evaluation programme, which is administered by NICE, and Evaluation through Commissioning, which is administered by NHS England. There is significant concern that they could limit access to medicines for people with rare diseases. There are widely held concerns that the process in the highly specialised technology evaluation programme, introduced following the 2012 Act to appraise medicines for rare diseases, is too opaque and that the topic selection process is out of date. Does he have any plans to work with NICE to update the selection criteria for the pathway, as they do not take into account conditions defined by genetics, biomarkers or differences in clinical presentations?

Do the Government have any plans to increase the resources available to NICE to evaluate drugs through the highly specialised technology evaluation programme route, given that it is only resourced for three drugs appraisals a year, despite the European Medicines Agency licensing more than four times that amount? Finally, it is essential that patient groups have input on the process by which the drugs upon which patients rely are appraised, but a consultation on the programme has not yet been announced. When does the Minister expect that to take place?

Evaluation through Commissioning is a specialised commissioning pathway to conduct pilots to collect data to inform the decision-making process on funding for specialised commissioning proposals. It is more than a year since Commissioning through Evaluation was expanded, and a few months since it was rebranded as Evaluation through Commissioning. Will the Minister update members on the progress the process has made in expanding patient access to drugs? As I understand it, no medicine has been selected for the programme. When does he expect that to change? Will he update the House on the effectiveness of the early access to medicines scheme to date?

There are more than 6,000 rare conditions. A disease can be described as rare, but having a rare disease is clearly anything but. Improving access to medicines and treatments for the 3.5 million people affected by rare diseases is crucial in improving their quality of life. We have heard moving personal stories from Members from all parts of the House in this debate. I was looking on Twitter at some of the contributions made by members of the public in the past 24 hours. One tweeter said:

“If I could go on the #vimizim I could start to work and pay taxes for others to get hold of the drugs they need”.

That is just one contribution among many, and I ask the Minister to reflect on them after the debate. Many issues need addressing to improve the system of medicine appraisals, and we have touched on just a few today. I hope the Minister will take on board what Members have said, and I look forward to his reply.

3.46 pm

The Parliamentary Under-Secretary of State for Life Sciences (George Freeman): I start by thanking Mr Speaker and the Speaker’s Office for granting this debate and for

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allowing the Twitter debate, which has been a big step forward for public engagement. I thank the hon. Member for Leeds North West (Greg Mulholland) for bringing the debate to this forum this afternoon. I suspect that in the 14 minutes I have available, I will not be able to answer every question, but I have made a detailed log and, with permission, perhaps I can write all those present with answers if I run out of time.

I pay tribute to the parents and the patients, some of whom are here today, whom I have got to know over the past few months, particularly Sam Brown and his mother, Katy, Jagger Curtis and Archie Hill. Others have mentioned the MPS Society and Christine, and the many people in Action Duchenne and the Muscular Dystrophy UK group. This campaign raises some of the hardest issues at the heart of public health and the NHS, and is being driven hard by the parents and patients with active representation from all parties in the House. It is my job to respond as best as I can and to try to put in place a policy landscape, but I pay tribute to them for their work in raising difficult issues that need to be dealt with. I do not think anyone can fail to be moved by the situation that the parents and children find themselves in. I assure them, as I do everyone else in the Chamber, that I wish there were an easy solution.

It is absolutely right that every child and patient in this country should ask for and expect the very best from our NHS, but it is equally true that, as a taxpayer-funded, universal, free-at-the-point-of-use, comprehensive health service, we simply cannot afford to provide every single treatment. I will say some more about the pressures on the system, particularly in the field of rare diseases.

As several Members have been kind enough to point out, this is one of the issues on which I have worked most tirelessly since taking office as the first Minister for Life Sciences last year. I have had several meetings with the hon. Member for Leeds North West and campaigners. Indeed, the Prime Minister and I spent more time talking about this subject than any other in my first nine months in office. I continue to work with NHS England to help it develop a more appropriate mechanism for the transparency and timeliness of its processes in all the specialist services. I have met MPs from all parties, patient groups, drug companies, campaigners and children, and I will continue to be happy to do so.

These are some of the most complex, difficult and life-changing decisions that any Department has to deal with. It is in everyone’s interest that such decisions are taken not by politicians but by clinicians and healthcare professionals, whose job it is to make those decisions—indeed, they do it for us every day of every week of every year. I thank them for that.

I want to discuss the context in which the challenge of rare diseases is developing, and what the Government are doing about it. I also want to discuss the timetable for the specific drugs that have been mentioned. I will then deal with some of the questions that were asked. We are at the forefront of an extraordinary revolution in biomedicine that is increasing pressure on all healthcare systems throughout the developed world, and will continue to do so. There are currently more than 6,000 rare diseases, and it is estimated that one in 17 people will suffer from a rare disease at some point in their lives. Therefore, more than 3 million people have a rare

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disease in the UK. The NHS is attempting to put in place a fair mechanism for dealing with their needs as best as it can.

The term “ultra-orphan” has no formal or legal definition, but it is taken to mean a disease

“affecting fewer than 500 people in England”,

which means a prevalence of around one in 100,000 patients. Having come to the House after a career in biomedical research, I know well that rare-disease pressure is going to grow exponentially as the extraordinary advances in genomics and biomedical research mean that we discover that more and more diseases that we used to think of as a one-size-fits-all blockbuster are rarer diseases that require stratified, targeted and, ultimately, personalised therapies. I can assure the House that the Prime Minister, who has experienced first hand the huge pain of rare disease in a family, feels that personally. We have devoted time to trying to tackle it, and will continue to do so. Indeed, that is part of the reason why the Prime Minister created my role: part of my remit in government is to tackle some of these issues.

We are doing a number of important things on rare diseases. We have put £20 million into funding the National Institute for Health Research’s rare diseases translational research collaboration and £900,000 into funding to support the work led by Public Health England to establish the first UK rare diseases register. We are leading the work with other EU countries and key colleagues to develop a European reference network to support research. We have also launched the precision medicine initiative and the rare disease consortium, but we are going further.

Central to the mission of the new ministry of life sciences is dramatically accelerating UK leadership in the field, which is why we have established Genomics England. We are the first nation on earth to seek to sequence the full genome of 100,000 NHS patients and combine that with clinical data to form the world’s reference database for targeted and stratified diagnostics and treatments. That is why we have launched the stratified medicines initiative, and why I have launched the early access to medicines scheme.

A number of colleagues challenged me about whether we were getting a grip on this: I have launched a review of the accelerated access to innovative medicines and technologies for that reason. I can assure Members that the scope of the review has struck a chord around the world. We are looking at NICE and at the regulator, and the vision of the review—I have asked for first recommendations this autumn—is to look at how we can dramatically accelerate the timeline for innovative medicines to come into the NHS, dramatically shorten the timeline for patients, and unlock what is essentially the great win-win at the heart of the NHS. We can use its research potential—its genomic and clinical informatics potential—as the world’s only integrated healthcare system to drive research into new drugs and bring down the time and cost of developing them. That way we can get drugs tested and developed here, to the benefit of our patients, while putting this country at the forefront of the revolution again.

We need to remember that it typically costs a billion to a billion and a half pounds and takes 10 to 15 years to develop a new medicine. That is unsustainable for the industry and for us. We cannot afford to pay the premium price at the end of patent life that the industry requires. We are leading the global race to put in place a new

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landscape. I fear that the solution will not come in time to solve the particular funding issue that has been mentioned, either this month or this quarter, or even this year. Nevertheless, we are making rapid progress. We will look back with pride on the UK’s leadership in this field.

NHS England has in place very carefully worked out decision-making processes for making drugs for rare diseases available to patients, and I want briefly to outline how they work. Because of their rarity and the low patient populations, services for rare conditions are commissioned nationally by NHS England, as opposed to locally by clinical commissioning groups. These specialised services include 146 prescribed medical services set out in legislation and account for approximately 14% of the total NHS budget—£14 billion a year. It is worth remembering the price of the system. For just this one class—the Translarna drugs alone—we are talking about hundreds of millions of pounds over a lifetime. We have to reduce the cost. We simply will not be able to afford the price required by the companies for every single new class that comes on stream.

The NHS England specialised commissioning process has been set out very carefully. It starts with one of the 68 clinical reference groups in NHS England creating a commissioning policy, which is produced by clinicians and other medical professionals. The commissioning policy is referred to one of the care boards and then to a clinical panel, which assesses the draft policy against the known evidence, with particular regard to clinical effectiveness and cost-effectiveness. The supported policies are passed on to the clinical priorities advisory group, which ensures that due process has been followed and makes a recommendation to the specialised commissioning oversight group. It considers the appropriateness and relative priority of new and existing treatments. The final sign-off is by the specialised commissioning committee, an NHS board sub-committee. NHS England’s clinical priorities advisory group formulates recommendations on the basis of clinical advice. I stress to colleagues across the House that it is not in anyone’s interest for Ministers ever to attempt to intervene in clinical decisions.

I want to touch on the timetables for the drugs mentioned by a number of colleagues: Translarna and Vimizim. On Translarna, the clinical priorities advisory group developed the clinical commissioning policy for the treatment of the mutation, and the policy was out for consultation between 24 March and 23 April. The group is considering the draft commissioning policy today and tomorrow and will make a recommendation to the specialised commissioning oversight group very shortly. The oversight group will consider the recommendations on 24 June and make recommendations to the specialised commissioning committee. The committee will make recommendations on 30 June and then make a decision on whether to commission Translarna nationally until NICE releases final guidance.

Before purdah, I was delighted to refer Translarna as a topic for evaluation by NICE’s highly specialised technologies programme. It is unfortunate that the general election fell right in the middle of the consultation process; that explains some of the difficulty we had dealing with the correspondence, as the hon. Member for Leeds North West mentioned. Final guidance on Translarna is expected in February 2016; draft guidance will be complete by the end of this year.

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Similarly, Vimizim is being considered by the clinical priorities advisory group today and tomorrow and a recommendation will go to the oversight group. That recommendation will be considered on 24 June, and the final recommendations will be made on 30 June for subsequent consideration. NICE’s highly specialised technologies programme will release final guidance on Vimizim in October 2015. It is important to point out that NICE has not yet issued its final guidance on Vimizim to the NHS. I encourage patients, the public, professionals and the manufacturer, BioMarin, to engage with the ongoing consultation.

I have several questions to answer with just under 120 seconds remaining. It would not be appropriate for me to try to spin through every one, so with colleagues’ permission, I will write with detailed answers to them all. Several Members from across the House asked whether we could do something to raise money more quickly to purchase these drugs. I am discussing with the Chancellor the whole issue of how we purchase specialist drugs and put in place a landscape so that we are not only bringing drugs more quickly into the NHS and unlocking its power as a research engine, but updating our commissioning structures.

The accelerated access review that I am leading does not just address how we light the runway in terms of regulations and NICE and the Medicines and Healthcare Products Regulatory Agency’s processes to bring drugs to proof of concept in the system more quickly; it specifically looks at how we can commission better. It also deals with the cancer drugs fund. I hear the comments from north of the border—I used to advise Scottish Enterprise on this whole field. We will look at whether we might put in place some kind of innovative medicines fund for rare diseases and specialist drugs to support testing medicines within the system in a research medicine setting, particularly for rare diseases.

In the next few years, Genomics England and our leadership of genomic insights into diagnostics and new drugs will bring on a range of potential new therapies. We need to ensure that England has a landscape for testing those drugs that is compatible with Scotland. That may well mean that we will not pay premium retail prices to manufacturers at the end of a traditional phase III or phase IV development process, but build a new model of commissioning based genuinely on evaluation, thus unlocking the power of the NHS as the world’s greatest research engine.

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

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Worcester’s Southern Link and the Carrington Bridge

[Mr Andrew Turner in the Chair]

4 pm

Mr Robin Walker (Worcester) (Con): I beg to move,

That this House has considered dualling of Worcester’s southern link and the Carrington Bridge.

It is a pleasure to move this motion under your chairmanship, Mr Turner, and to do so before a Minister whom I am truly delighted to welcome to his place and his new role. I discussed the strong case for improving Worcester’s transport links with the previous Roads Minister, the Under-Secretary of State for Transport, my hon. Friend the Member for Scarborough and Whitby (Mr Goodwill), when he hosted me, my hon. Friend the Member for West Worcestershire (Harriett Baldwin) and the former Member for Mid Worcestershire, as well as representatives from Worcestershire County Council and the Worcestershire local enterprise partnership, at his office in the Department for Transport. Since then, the Secretary of State for Transport has been to Worcester to see for himself both the ongoing work to dual the southern link and the bottleneck currently formed by the Carrington bridge. The new Minister is always welcome to make that journey himself, and I would be delighted to show him the long queues of traffic.

The Minister will know that traffic is one of my constituents’ top concerns—it is one of the few things keeping Worcester from the very top of the list of cities in the country in which to live; it is in the top 10—and that the southern link road is not only a vital road but a key strategic link for our county and its neighbours. In addition to its crucial role as a transport link, it provides essential flood resilience for a city that is unfortunately all too well known for its propensity to flood. Beyond the single carriageway Carrington bridge, there is a long area of causeway on which the A4440 crosses the flood plain to the south of Worcester, and I was pleased to learn from the Environment Agency only this morning that it is already advising on how best the widening of that causeway could be achieved without a negative impact on flooding elsewhere.

I am delighted that after years of support from Sir Peter Luff I am joined for today’s debate by his successor, my hon. Friend the Member for Mid Worcestershire (Nigel Huddleston), whom I congratulate again on his election to this place. My hon. Friend the Member for West Worcestershire, newly elevated to high Government office, would also be here were it not for the demands of that office. The A4440 southern link road around Worcester is not only a vital part of the city and county’s infrastructure, but the key link between the M5 and her constituents in Malvern and many other points west of Worcester. In addition to the strong support we have won for its improvement from Worcester City Council and Wychavon and Malvern Hills District Councils, we have now submitted letters of support from Herefordshire County Council and The Marches local enterprise partnership. It is one of only two crossings of the mighty River Severn between Holt Fleet and Upton-upon-Severn, and the only one with the potential to carry more than a single lane of

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traffic. It is the key bottleneck for a population of hundreds of thousands and an increasing amount of business traffic.

As my hon. Friend the Member for Mid Worcestershire pointed out at last week’s Prime Minister’s questions, Worcestershire has been the third-fastest growing county economy in the UK over the past few years after only London and Oxfordshire. That growth has seen unemployment more than halve and youth unemployment decline even further. It has seen huge numbers of new businesses starting up, existing businesses, such as Joy Mining Machinery and COMPCO in the west of Worcester, growing and taking on more staff and the development of new clusters of excellence, such as Malvern’s thriving cyber-security cluster. The rise of rural broadband notwithstanding, such commerce naturally increases the weight of traffic and the demand for infrastructure.

At the same time, our county has committed to building tens of thousands more homes. There are already smart new estates to the west of Worcester and where once Dines Green marked the western edge of the city, there are now new houses, doctor’s surgeries and care homes at Earl’s Court Farm and along the Bromyard Road. Under the south Worcestershire development plan, tens of thousands more homes will be built to the south and west of the city. Not all those people living to the west of the city will be able to work, shop and get to schools on the west side of the river and not all those on the east will be able to stay on the east. We want the new residents of the south Worcestershire urban extension to be able to enjoy the beautiful Malvern hills and the Elgar trail, and we want those on the west to be able to venture across to the constituency of my hon. Friend the Member for Mid Worcestershire and experience the delights of Evesham, Droitwich and Broadway.

In addition to the rising demand, there are some wonderful transport improvements in prospect for which I should thank the Minister and his Department. The previous Government committed to upgrading both of Worcester’s motorway junctions and resurfacing much of the M5, as well as making it a smart motorway. That will improve our access to Birmingham, to the M5 corridor with its high-tech jobs and aerospace and, indirectly, to London and the rest of the country.

That improved access will only fully benefit my constituents, and those of my neighbouring Worcestershire MPs, when the southern link allows them to reach the M5 with greater ease. We also have the exciting prospect of a project for which the county has been calling for over 30 years being delivered in the next two: Worcestershire Parkway Station. That crucial addition to our rail links will improve our rail connections with London, Bristol and Birmingham and serve the entire south of the county. For my constituents in Worcester, it will mean that thousands more have access to our railways, as neither of our existing stations has sufficient parking for people to be able to leave their cars. For people living in Warndon Villages, St Peter the Great or anywhere on the western side of the city, Worcestershire Parkway will make rail travel an option, but only if they can reach the station. The southern link provides crucial connectivity for all those people.

Today, however, and for most of the past decade, the southern link has been running at capacity. As a regular listener to BBC Hereford and Worcester, I am far too often regaled with the news that traffic is at a standstill

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on the Carrington bridge. Far too often in the morning, I am sat in long queues on the bridge or the approach road. Every morning and every evening, that crucial transport link is simply overwhelmed by the amount of traffic with which it must cope. As a result, more traffic is diverted through the centre of Worcester city.

When the floods hit Worcester last February and closed our city centre bridge, the queues could take hours. Getting up at 6 am to make a 9 am appointment in Worcester was not an ideal commute. That happened before the new developments in the south Worcestershire development plan, which the county council estimates could generate an additional 342,000 trips a day by 2019 and 588,000 a day by 2031. The road that has skirted the south of Worcester for decades has needed dualling for most of that time and the bridge that joins the west of the Severn with the east might have admirably met the challenges of 1985, but it desperately needs upgrading for the 21st century.

One of the pleasant surprises of the visit of the Secretary of State for Transport on a sunny April day this year was taking him down the hill from the viewing platform that overlooks the Carrington bridge and coming across the plaque that commemorated my father, as MP for Worcester and Energy Secretary, opening it on almost precisely the same day in 1985. A great deal has changed since 1985 when I was seven years old, but I hope we share with that period the fact that we have a Conservative Government prepared to invest in our country’s infrastructure and inject new energy into the challenge.

It is worth noting that the coalition Government invested in improving the southern link and, along with Worcestershire County Council and the LEP, delivered the substantial upgrades that the Transport Secretary was able to see under way during his recent visit. Through a combination of pooling the new homes bonus, local funds and a Government contribution to the Worcestershire LEP’s strategic economic plan through the local growth fund, the dualling of the southern part of the road and upgrades to its major roundabouts have already been set in motion. After decades in which Worcester’s infrastructure seemed to be set in stone, this is a huge step forward and the first major new roads investment since the 1980s in this part of the county. However, the full benefits of all that work—the dualling of the A4440 between the M5 junction and the Ketch roundabout—will not be seen until full dualling of the road is achieved, including the bridge and the causeway beyond it.

Many constituents have complained to me that it could be a waste of money to have doubled the road only as far as the Carrington bridge. Many more have pointed out that traffic from the west will still head through the city, rather than around it, as long as there is no dual carriageway between the west and the south. Put simply, the wise investments made by our county, our districts and our country in upgrading the road could be made to look like a white elephant if the job is left incomplete, but a golden opportunity if it is finished. A well-supported online petition put together by my constituent Brian Gladman also made that point. Mr Gladman also campaigned for many years to improve the broadband infrastructure in the west of Worcester, which ensured that all my constituents are well served. It is great that he is bringing his leadership to improving our roads infrastructure, the importance of which was hammered home to me on the doorsteps of Worcester during the recent election campaign.

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Any reader of the Worcester News will know about the concerns regarding the layout of the new roundabouts and that they are a consequence of the design of the scheme being for a proper dual carriageway but the work at this stage only being funded sufficiently to deliver that dualling as far as the River Severn. Once the dualling is taken across the river and over the Carrington bridge, the bottlenecks will be removed, the traffic will flow more freely and the roundabouts will work as they were intended.

To date, dualling has achieved significant improvements in traffic flow, but what can be achieved in taking it further would be much greater. The work has been proceeding on a phased basis and we are seeking help with phase 4, estimated to cost a total of about £74 million. The first three phases, which cost about £40 million, will be completed by 2018. At that point, crucially, whether through local funds, further LEP bids or Government funding, we must have the finance in place to secure the fourth phase. Worcestershire County Council has estimated that the Government contribution required would be in the region of £60 million, but that the benefit-cost ratio is more than 2:1.

My point today is to make it clear that that would be money well invested. As the chairman of our LEP, Mark Stansfield, said,

“The southern link road is a key initiative focussed on keeping businesses moving and connected in Worcestershire and to neighbouring counties. The dualling”—

of the Carrington bridge—

“is fundamental to achieving the goals set out in the ten year Strategic Economic Plan.”

Simon Geraghty, leader of Worcester City Council and deputy leader of the county council said:

“The Worcester Southern Link Road is one of the most important strategic routes in the County, used by over 30,000 motorists a day, to connect communities and businesses west of Worcester to the M5 Motorway network as well as providing an alternative route for local traffic to bypass the busy…City Centre. However, heavy congestion on this road is now holding the Worcestershire economy back and hampering efforts to improve the environment in the historic City Centre. Everyone agrees this road needs to be dual tracked from the motorway to the west of Worcester to enable strong economic growth to continue and allow the much needed new homes and employment sites to go ahead. Working together, clear plans and funding packages are now in place to complete significant sections of the route but the narrow single lane Carrington Bridge is proving to be a real bottleneck. Securing funding to tackle this issue is now the County’s number one transport and infrastructure priority.

It is vital to deliver the growth targets set out in the County’s 10 year Economic Plan and working together funding must be secured if we are to unlock the economic potential of this part of Britain whilst preserving the great quality of life and environment that Worcestershire already offers.”

As Councillor Linda Robinson, the newly elected leader of Wychavon District Council, put it,

“The Carrington bridge is an essential piece of infrastructure, being part of a main arterial route connecting much of South Worcestershire and the M5. It is a notorious bottleneck and currently causes considerable delays and frustration to residents, visitors and commercial users alike. Its deficiencies represent a very real negative impact on business investment. Improving accessibility reinforces the message that Worcestershire is open for business by addressing such key issues.”

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My favourite quote of the lot, however, comes from the president of our chamber of commerce, Jim McBride—never knowingly underspoken—who said:

“We must proceed with the Southern Link Bridge as the current situation is intolerable. We have a dynamic growing industry, mainly in the high tech sector, being held back by our inability to build ONE bridge. It’s like having a fibre optic cable with an old fashioned copper section in the middle making the whole thing unworkable!”

You just need to come off the motorway and down to the bridge to see how ridiculous it is. We need to help our industry not hinder it.”

Amen to that.

Carrington bridge overlooks the battlefield of Worcester where, in 1651, Cromwell won the day for Parliament and stormed the River Severn with his bridge of boats. The same barrier that he overcame that day in a few hours remains a challenge centuries later for my constituents and many others beyond, but securing the investment will turn it from a barrier to growth into a pathway to prosperity. I commend the project to the Minister and I hope that he can support it for funding, whether as a pinch point, a local road or a vital strategic road. Most of all, it is a project that is essential to local growth.

4.13 pm

The Parliamentary Under-Secretary of State for Transport (Andrew Jones): It is a pleasure to serve under your chairmanship, Mr Turner, for the first time.

I congratulate my hon. Friend the Member for Worcester (Mr Walker) on securing this afternoon’s debate on the dualling of Worcester’s southern link and the Carrington bridge. I also thank him for the invitation to come and see things for myself. I have some knowledge of the area and have driven the roads that we are discussing, but my main reason to visit my hon. Friend’s constituency has often been related to New Road and watching the cricket. Nevertheless, at some point I hope to take him up on his offer.

My hon. Friend mentioned that people want to travel around the area and to experience the delights of the Malvern hills and western Worcestershire. I, too, want them to experience that, because the area is truly special. I liked the lovely link across the years with the story of his father opening the bridge in 1985 and my hon. Friend now working to make it even better.

I am aware that the topic has been the subject of previous parliamentary questions and ministerial correspondence. I praise my hon. Friend for continuing to highlight the importance of good transport infrastructure in building a strong economy and sustainable communities. I am aware of his excellent work over recent years to represent and promote Worcestershire as a whole. I hope to address some of his points.

Worcestershire is a marvellous county with a population of more than 500,000. It is served by a number of key transport connections, and today’s debate should be placed in that broader context, which I will highlight. The nationally important M5, M42, M50 and A46 all run through the county, as do the major local roads, the A449 and the A4440—our focus today. Rail also plays an important role in the county, with lines offering connections to Birmingham, Hereford, Bristol and London, via Oxford.

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My hon. Friend emphasised the success of the Worcestershire economy, which has an entrepreneurial work force—that is certainly my experience—and the county is an attractive place in which to live and do business. As he said, the Worcestershire transport network is critical to the performance of its local economy. Reliable connectivity enables the residents of Worcestershire to have good access to jobs and local businesses to have good access to their markets.

The area, however, has a propensity to flood—it is famous for that—and I have been there during occasions of intense floods, seeing for myself the impact on local roads. My hon. Friend highlighted the floods of the winter of 2013-14, which was the wettest winter on record. We had flooding not only in Worcestershire, but in parts of the south-west, the south-east, and Yorkshire and the Humber—throughout the country. I remember the Prime Minister visiting my hon. Friend’s county one weekend in February during the flooding. I checked before the debate, and the River Severn had peaked at 5.3 metres, its highest level since summer ’07, and 100 or so properties in Worcestershire were flooded, with more than 40 of them in his constituency.

Resilience is an important issue for the local transport network. The floods caused a number of road closures and impacted on business. The Worcestershire County Council emergency response team did an impressive job, which was highlighted at the time by my hon. Friend. The Secretary of State for Transport has announced additional funding for highways authorities throughout the country—some extra support to tackle their resilience issues—and that saw more than £2 million allocated to Worcestershire County Council. My hon. Friend made the point about the importance of the reliability and resilience of the transport infrastructure.

One of the key things that I have to tackle and one of the key priorities of the Department for Transport is our road investment strategy. Basically, the Government are committed to a long-term economic plan, as we have detailed previously, and part of that is to deliver infrastructure investment—such investment in transport is key to continuing economic growth. As we all know, roads play an important part in our economy—a central role. Nearly every area of that economy would grind to a standstill if our road network did so. We require a high-performing road network to deliver the economy that we need. Our commitment in delivering that is the road investment strategy, which is a significant, £15 billion commitment that will see investment in 127 schemes across the road network between now and 2021.

This is a positive time for road investment, and that has implications for my hon. Friend’s constituency, because our strategy includes significant investment in Worcestershire, such as the introduction of smart motorways between junctions 4a and 6 on the M5. The work on that scheme is due to start later this year. When it is complete, we will see additional capacity through the use of the hard shoulder as an extra lane. We will also see the deployment of world-leading technology to make journey times more reliable and to reduce congestion on the network.

Mr Robin Walker: I am grateful for the investment that has been announced, which I welcomed earlier in my speech, in particular the fact that new surfaces are included, because that will help to make the motorway

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quieter for nearby residents. Over the years that has been a major concern for my constituents in Warndon Villages and for those of my hon. Friend the Member for Mid Worcestershire in Droitwich. Does the Minister accept that linking the extra capacity on the M5 to the west of the county will have significant economic benefits for the wider county economy?

Andrew Jones: I certainly accept that. Improving the strategic road network will have a knock-on effect on all the other arterial roads surrounding it. That is the point. A network does not just stop; it runs and flows—or at least it is meant to. I agree entirely with my hon. Friend.

Investment in local transport infrastructure such as the southern link road is vital to communities in the area, as recognised not just by my hon. Friend but by all local MPs. The strong economic benefits that the southern link road and Carrington bridge would bring are recognised by the LEP in its strategic economic plan. The A4440 Worcester southern link road is seen as an essential part of Worcester’s main road network, providing that important link between the M5 south and west to Worcester, Great Malvern and the wider Malvern Hills district, and on into Herefordshire and beyond. It is also an important bypass of the city centre and provides one of the two crossings of the Severn—the next crossing, at Upton, is a long way south. The road’s importance—its impact on the immediate area and on the remainder of the county—is entirely understood.

That is why, as my hon. Friend has highlighted, there has already been some investment in the road: the improvements to the Ketch roundabout and dualling of the A4440 towards Norton roundabout received funding as a major local transport scheme through the Worcester transport strategy. That strategy received a funding package of £14.2 million from the DFT and aims to improve the role of Worcester as the county’s principal economic hub through the delivery of a package of measures designed to improve sustainable transport and maximise access to economic activity in the city.

The elements of the southern link road package have already been detailed, and have made quite a difference. My hon. Friend highlighted how phases 1 to 3 have already brought improvement, but the image he gave of high-level fibre optics suddenly coming to an old copper connection brought home the importance of completing the scheme. I understand, however, that the work on that fibre-optic section—phases 1 and 2—has been progressing well and is due to finish this summer.

The Government recognise the need for improvement. That is not the issue here at all. The improvements on the A4440 south of Worcester have helped to support growth. The Government have put investment funding in place for those improvements. The importance of further investment was recognised in the expansion of the Worcestershire growth deal in January this year. We have confirmed that we will work with the county council, as the local highways authority, to determine how further stages of the work on the A4440 can be taken forward.

The A4440 is a key local road, and as such is the responsibility of the local highways authority, the county council. Any proposal for further improvements to the road is therefore a matter for the council. I know that the council recognises the complexity of the situation. The road is in a beautiful area of historic significance,

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as my hon. Friend highlighted, and crosses the Severn at its floodplain. The situation is sensitive, and I understand that feasibility work would need to be undertaken on the scheme. That is already under consideration.

I turn now to the point about clarity on funding streams. The Government have made a commitment to growth deals and to providing ongoing support to local enterprise partnerships to deliver jobs and growth. Funding for proposals such as the further development of the southern link road and the Carrington bridge is provided through the Government’s local growth fund and the growth deals agreed with LEPs. Any future growth deals would allow Worcestershire to put forward schemes that would make the biggest difference in the area, as has happened with previous deals, including the one for this road. It is therefore important that local MPs continue to work with the county council and the local enterprise partnership to maintain the scheme’s visibility as funding becomes available.

The Government recognise the power of transport to change lives and economies. It brings opportunity, tackles congestion, and improves connectivity and quality of life in an area. I have mentioned some of the ways in which the Government are already working to support transport infrastructure in Worcestershire. There are others. The local enterprise partnership was awarded £47 million in its growth deal last year, and a further £7.2 million in January. The local enterprise partnership has made a good start in delivering its growth deal and should be congratulated on both its strong governance and its excellent work in delivery. My hon. Friend gave a pithy quote from his LEP leader.

My hon. Friend has made a compelling case. He has clearly won local support. The quotes from the LEP and the council demonstrate that phases 1 to 3 have made a difference. I cannot say today, “I am bringing you a cheque from the Treasury”—I wish I could—but I can say that I think the scheme is a good one and that phase 4 would indeed complete the package. The Government will continue to invest in transport, in local growth deals and through LEPs. It is therefore important to make sure that this scheme is at the front of the funding queue—he has made a compelling case but it is a big queue. Historically, there has been under-investment in infrastructure, and the Government are trying hard to catch up. The infrastructure deficit almost matches the financial deficit that we are also tackling. The Government remain committed to investing in infrastructure and to excellent projects waiting for funding. I know that, with his customary tenacity as a champion for Worcester, he will keep working with neighbouring MPs to maintain the profile of the scheme. I will keep working to make sure that the Government deliver the best we can for the people of the city of Worcester and the rest of the fine county of Worcestershire.

Transport infrastructure is necessary, and the scheme is a good one. It is a question not of lack of will but of making sure that we have the cash. As the Government get and keep the economy moving, more and more cash is being invested in infrastructure. The issue is making sure that this scheme is at the top of the list locally, and my hon. Friend has done a fantastic job of making a compelling case for that today.

Question put and agreed to.

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Sustainable Development Goals

4.28 pm

Patrick Grady (Glasgow North) (SNP): I beg to move,

That this House has considered negotiation and implementation of the Sustainable Development Goals.

It is a pleasure to serve under your chairmanship, Mr Turner. I begin with the words of Nelson Mandela 10 years ago at the Make Poverty History rally:

“Like slavery and apartheid, poverty is not natural. It is man-made and it can be overcome and eradicated by the actions of human beings.”

It is useful to reflect on those words as we discuss the negotiation and implementation of the sustainable development goals. I am pleased to see that Members from across the House are present. I hope there will be time for everyone who wants to speak to do so, and I look forward to the response from the Minister. I am grateful to the many organisations that have provided briefings in advance of the debate.

I refer Members to my entry in the Register of Members’ Financial Interests: until the election I worked for the Scottish Catholic International Aid Fund, so I had a professional as well as a personal interest in international development issues. I was also the vice- chair of the Network of International Development Organisations in Scotland and I sat on the Scottish working group on sustainable development goals, which I will refer to later.

The Make Poverty History rally that Nelson Mandela spoke at came five years after the United Nations agreed the millennium development goals—at that time, the most ambitious agenda for tackling world poverty in history. For 15 years, the MDGs have provided a framework on which national Governments, multilateral agencies, and even small local charities can base their international development efforts. Progress has been significant, if not complete.

The headline goal of halving the proportion of people living on less than $1.25 a day has been met, but not uniformly around the world. In some parts, notably sub-Saharan Africa, progress towards many of the goals has remained static or even gone into reverse. The framework was established with a 15-year timeframe, which is why global attention is now turning to what comes next.

Negotiations on the successor framework—the sustainable development goals—were notable for their inclusive and participatory nature, and particularly for the role played by global civil society and social movements, especially in the global south and the worldwide Beyond 2015 network. The SDGs will therefore begin life with considerably greater legitimacy than the MDG framework, but it is important in the final months of negotiation that civil society’s voice continues to be heard and respected. The last thing that should happen is diplomats and ministerial delegations locking themselves in a basement room at the UN to thrash out last-minute concessions.

The zero draft outcome document for the SDG summit in September was published on 1 June, and is the culmination of several years of work by a whole range of stakeholders, including the high-level panel that the Prime Minister co-chaired in 2013. The zero draft outcome is a highly ambitious document. In its own words, it is

“a plan of action for people, planet and prosperity that also seeks to strengthen universal peace in larger freedom.”

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The zero draft sets out 17 goals and 169 targets, encompassing a broad range of economic, social and environmental objectives, including on issues traditionally associated with tackling poverty, such as health, education and nutrition; but it also tackles questions of equality, including gender equality, and climate change, and recognises the importance of infrastructure and sustainable consumption.

Most important is the universal aspect of the framework, and the concept of leaving no one behind. The goals and targets are to be met by all social and economic groupings. These concepts have been warmly welcomed by civil society and many other stakeholders, but the draft is not perfect; it is the basis for further negotiations by UN member states. I hope that in the months that remain, more can be done to reinforce the aims and objectives that it outlines.

Save the Children and others have suggested that the language on leaving no one behind could be strengthened, and others, such as Age International, have called for a stronger commitment to data monitoring and disaggregation. There are some broader concerns about the model of development implied by the language of the zero draft. Both the Catholic Agency for Overseas Development and SCIAF call for the promotion of human dignity, rather than ideas of prosperity and economic growth, to be the driver of the development agenda. Indeed, the UN Secretary-General’s synthesis report on the post-2015 agenda earlier this year specifically talked of a

“Road to Dignity by 2030”.

I would be particularly interested to hear the Minister’s views on including that concept in the framework.

As the final negotiations proceed, I hope that Scotland’s voice will be heard at the top table. I referred earlier to the Scottish post-2015 working group on the SDGs, which has brought together civil society as well as officials from both the UK and Scottish Governments to share knowledge and information about the negotiation process and begin to look towards implementation. I hope that the Minister and Secretary of State will seriously consider inviting one of their Scottish Government counterparts—the Cabinet Secretary for Culture, Europe and External Affairs or the Minister for Europe and International Development—to join the UK delegation to the SDG summit in New York in September.

Albert Owen (Ynys Môn) (Lab): I congratulate the hon. Gentleman on securing this important debate, and on securing a debate this early in his parliamentary career. I agree with him with regards to the Scottish Government, and I ask the Minister to consider the other devolved Administrations, where there is expertise in bilateral agreements between their nations and nations in Africa and other parts of the world.

Patrick Grady: That is a helpful point. I spoke briefly in my maiden speech about the ties between Scotland and Malawi; such reciprocal agreements and community links are to be found across the United Kingdom. The respect agenda, which we heard so much about during the independence referendum, means that this is a good opportunity for the voices of Scotland and the constituent parts of the UK to be heard on a world stage.

Once those negotiations are complete—indeed, before they are complete—we must consider how the new framework will be implemented. The universal nature

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of the goals is markedly different from the MDG framework. It places an obligation on all Governments—north and south, rich and poor—to work towards a world free of poverty. The Financing for Development conference in Addis Ababa in a few weeks’ time will be an important opportunity for world Governments and civil society to agree ways of making funds available to deliver the goals. I hope that the Prime Minister and the Chancellor will give the summit the same priority that many of their global counterparts plan to.

Traditional aid flows are important, and I congratulate the UK Government on meeting the 0.7% target, but I question the measure of gross national income that they are using to calculate their 0.7% contribution. The Scottish National party will continue to ask hard questions about how that money is spent. Our official development assistance spend should not undermine public services in developing countries, nor should it be used for defence or securitisation purposes.

We must also move beyond aid. Many campaign groups, including Oxfam and Christian Aid, are rightly calling for a radical overhaul of international taxation. Corporate tax dodging is costing developing economies billions each year—money that could be spent on education, healthcare and other vital services. Initiatives such as the Robin Hood tax could generate further funds for tackling poverty and climate change, and we must remain alive to the question of unjust and unsustainable historical debt, which still burdens too many developing countries.

Implementing the SDGs will require a whole-of-Government response. Every decision made by the Government has some kind of impact overseas—not just tax and trade decisions, but decisions around procurement, energy, education and more all have a global footprint. Indeed, our own individual energy use and consumption habits have been, for too long, at the expense of the poorest and most vulnerable people in other parts of the world who are now being hit first and hardest by the impacts of climate change.

The other major summit this year, December’s United Nations framework convention on climate change in Paris, must also be part of the process of implementing the SDGs. The same is true of the World Humanitarian Summit in Istanbul next year. Once again, I draw attention to the work of the Scottish Government, and their pioneering work in the areas of climate justice and policy coherence for development.

The universal nature of the SDGs means that implementation is an individual, national and global responsibility. It means that each of us should question our lifestyle choices and consumption habits. It also means that Governments of so-called rich or developed countries must look to their own backyards. What steps will Governments take finally to eradicate poverty here at home, to bring about gender equality and to tackle the causes and effects of climate change? Perhaps we should also ask under what reading of the SDG framework a decision to spend £100 billion on the renewal of Trident can be justified.

In concluding, I would like to thank again the many organisations that took time to provide briefings. I have not been able to refer to all their points but, in addition to those I mentioned, I encourage the Minister to look at the points raised by UNICEF, the Royal Society, Health Poverty Action, Leonard Cheshire Disability, the World Wide Fund for Nature and World Vision UK.

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During the 2005 Make Poverty History campaign, it was often said that we were the first generation with the knowledge, tools and resources finally to end poverty. Ten years on, the SDGs have the potential to provide a robust framework to put that knowledge, those tools and those resources into action. With the right political will, they can capture the imagination of not just Governments and civil society, but the wider public and communities around the world, because—to finish as I started—in the words of Nelson Mandela:

“Overcoming poverty is not a gesture of charity. It is an act of justice. It is the protection of a fundamental human right, the right to dignity and a decent life. While poverty persists, there is no true freedom.”

4.39 pm

Stephen Twigg (Liverpool, West Derby) (Lab/Co-op): It is a pleasure to serve under your chairmanship, Mr Turner. I congratulate the hon. Member for Glasgow North (Patrick Grady) on securing this very important and timely debate, providing an opportunity for Members of all parties to explore these issues and for the Minister to respond. The hon. Member for Glasgow North brings a wealth of experience from prior to his election. I refer people to my relevant entries in the Register of Members’ Financial Interests. I worked for five years, between 2005 and 2010, at the Foreign Policy Centre and for the Aegis Trust charity, which works in Rwanda.

As the hon. Member for Glasgow North said, Make Poverty History has been one of the most powerful social movements of this century so far. The impact that it had in mobilising a wide section of public opinion and its influence on our Government at the time was profound. It is good to have the opportunity to reflect on that and on the progress made since the millennium development goals were adopted. I do not want to repeat everything that the hon. Gentleman said, but he referred to various statistics. There is still a very big challenge on some of the basic issues that the millennium development goals were designed to address. About 1 billion people across the globe still live on less than $1.25 a day. That is the World Bank’s measure of poverty. The levels of hunger around the world are still far too high. Yes, things have got better, but more than 800 million people live without enough food to eat. Women are still fighting hard for their rights, and millions of women across the globe still die in childbirth. A great deal more needs to be done.

Like the hon. Gentleman, I welcome the progress that has been made in moving towards the summit in New York this September. The level of engagement and consultation with stakeholders, Governments and, most importantly, civil society offers the potential for a more holistic approach to development policy, which is welcome. It includes, for example, a renewed focus on climate change, the oceans, sustainable industrialisation and a strategy for modern and sustainable energy.

Focusing on the root causes of poverty is absolutely the right thing to do. The universal goals, about which the hon. Gentleman spoke, are most welcome. In particular, the aim of the focus on equality—one of the 17 proposed goals—is to reduce inequality both within and among countries. That, too, will secure a welcome. There is concern that with, as he said, 17 goals and 169 targets, this could all become somewhat unwieldy. It is right

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that the process is ambitious, but it must also be achievable. I echo what he said about the importance of listening to the voices of civil society as the process moves forward.

Taking an holistic approach domestically is also critical. I would be interested to hear the Minister’s response to this point. The Select Committee on International Development in the previous Parliament said that the Department for International Development

“must do more to influence policy across all Government departments”.

Concern has been expressed that DFID is now not represented on some key committees—ministerial committees and, crucially, the National Security Council, which covers very important issues such as climate change, economic stability, counter-terrorism and money laundering. It is surely vital that the Secretary of State for International Development be represented on the National Security Council, as well as on key committees such as the economic affairs committee, which deals with the crucial question of international taxation, to which the hon. Member for Glasgow North referred in opening the debate.

Let me finish by echoing what was said by both my hon. Friend the Member for Ynys Môn (Albert Owen) and the hon. Gentleman about the importance of our taking a UK-wide approach, engaging the devolved Administrations, welcoming the work that the Scottish Government and the Scottish Parliament have done with Malawi and listening to the voices from Wales and Northern Ireland as well as from Scotland and, indeed, to those at local government level in all parts of our country. The more that these issues engage not just central Government and Parliament, important as they are, but civil society, trade unions and business organisations, the more impact the sustainable development goals will surely have.

Parliament itself has a very important role to play. Opportunities such as today are, of course, welcome. There is also the role of the Select Committees—the International Development Committee and others—and groups such as the Commonwealth Parliamentary Association and the Inter-Parliamentary Union, which often provide a vehicle for focusing on some of these issues, country by country and region by region. Let us also use the opportunity of today’s debate—I hope that the Minister might have something to say about this—to emphasise what Government can do, because that is vital, and what civil society can do, which the hon. Gentleman rightly emphasised, but also the very important role that this Parliament can play in ensuring that we get the decisions right in September in New York. It is important not just that we have a good summit in New York in September, but that those decisions are built on beyond that, so that in 15 years’ time we can celebrate real achievements from the key goals that will be discussed in New York.

4.45 pm

Stephen Phillips (Sleaford and North Hykeham) (Con): It is a pleasure to serve under your chairmanship, Mr Turner, and to follow such an excellent speech from the hon. Member for Liverpool, West Derby (Stephen Twigg). We do not agree about very much, but I suspect that on this issue we are largely in agreement. I also congratulate the hon. Member for Glasgow North (Patrick Grady) not only on securing the debate, but on securing

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his election. He is very welcome in the House, not least for the expertise that he brings in this area. Out of an abundance of caution, I will say, although this is not in my entry in the Register of Members’ Financial Interests and, I think, is one of the things that do not have to be, that my partner is currently employed by the Government of Sierra Leone, but that is not something that touches much on this debate.

The debate is incredibly welcome, in part because of the importance of the sustainable development goals but also because all of us in the House who are interested in these issues have, to some extent, had our eye taken off the ball, in what has been a long process, by our own electoral cycle. I think that this is the first opportunity that the House has had to consider this matter, which is extraordinarily important not just for the developing world but for the security of this country, since we returned to this place. That makes the debate very welcome. I hope that we will have the opportunity again, before the House rises for the summer recess, to discuss all the matters that arise and to inform the process through which DFID is passing as we move towards the important adoption of the goals in September of this year.

As the hon. Member for Glasgow North said, the millennium development goals have been extraordinarily successful in tackling the root causes of poverty in much of the developing world. Some of the statistics that he mentioned are extremely telling and important. I do not know where the hon. Gentleman gets his figures from, but as I understand it, the number of people living in extreme poverty—on below $1.25 a day—has reduced by some 700 million since the previous Government adopted the goals as part of British policy. Efforts against disease and particularly against malaria and tuberculosis made great strides between 2000 and 2012. An estimated 3.3 million deaths from malaria were averted because of the interventions resulting from the millennium development goals.

There has been access to improved drinking water across the developing world, and disparities in primary school enrolment between boys and girls have almost disappeared, although there is more work to be done in that area. The role of women—the political participation of women—has increased throughout the developing world. That is very much to be welcomed. I know that that agenda is important to all Members of this House.

None the less, there are major respects in which we have not achieved what the world community set out to achieve. Major threats to sustainability, particularly in the developing world, continue. I am thinking of the way in which resources are exploited by companies that are interested only in the bottom line and by countries that regard it as in their national interest to rape the natural resources of the poorest in the world, who have no means by which they can defend themselves against those companies and countries. That is something on which the world will have to concentrate.

Hunger continues to decline, but further efforts are needed. The proportion of undernourished people in developing regions has decreased, but progress on that has slowed considerably since the advent of the financial crisis. That issue is particularly important. We take it for granted in this country that we have enough food. If people travel in west Africa or east Africa, they will see that that is not the case there. People genuinely do

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not have enough food on which to live, and chronic undernutrition of children remains a very considerable problem, as does child mortality.

I want to speak briefly about HIV therapy. There has been progress since the millennium development goals were introduced, but there remains a pervasive culture, particularly in much of Africa, in which HIV is regarded as something that cannot or ought not to be treated, and which is certainly not spoken about. The world needs to tackle that. We will tackle it when we adopt the goals in September, but there is a considerable problem to which Members have already drawn attention.

One of the great successes of the millennium development goals was that they were brief. They were an organising framework for donors and developing country governance. They provided a consensus around which the world community could coalesce, but here we have 17 goals: an amorphous set of principles that we all want to see achieved, but there are so many of them that, as the Prime Minister has said, there are simply too many to communicate effectively and there is a real danger that they will simply end up on a bookshelf gathering dust. I know that that is also the view of the Secretary of State for International Development.

In the remaining stages of the negotiation, it would be good if the message could go out clearly from this House, through the Government, that what needs to be done is to focus efforts so that the goals themselves are clear. In one sense, the SDG is a visionary document—how we all want to see the world in 2030—but the targets that have to be met must be measurable. We must have a set of aims and values that we can communicate to those who provide the funds that we rightly, although we often have to persuade people that it is right, deploy in the international aid budget. There are areas that are simply not tackled in the sustainable development goals, to which the hon. Member for Glasgow North alluded, such as climate change, because the attitude of the UN is that it is dealing with them by other means. Although the goals are welcome, more progress could be made as we move towards the meeting in September.

There are two areas on which I want the Minister to concentrate when he responds to my remarks. The first relates to health. The Ebola outbreak in west Africa showed that health systems in the developing world are not adequate to deal with large, widespread outbreaks of significant problems. When we get to the end of the outbreak—pray God that we now are; it seems as though we are—more people will have died of malaria in west Africa than will have died of Ebola for the simple reason that the healthcare systems in Sierra Leone, Liberia, Guinea and other affected countries such as Mali have not been able to cope with the appalling epidemic that the world has had to face and at the same time treat endemic diseases such as malaria. Such a discussion needs to be ongoing. What is the Minister going to do to make healthcare systems in the developing world more robust, and what is DFID’s view about the reform of the World Health Organisation, which, as everybody here knows, dropped the ball in relation to Ebola?

The Minister needs to concentrate on another issue that is not really mentioned in the sustainable development goals or the targets that surround it: corruption. Corruption in the developing world is endemic and takes money from the poorest people. The money being used to fund corruption, particularly in the civil services of developing

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countries, is money that would otherwise be used for public services and for the alleviation of poverty. That really needs to be tackled; it has not been tackled by the United Nations convention against corruption, because there are so many respects in which states are not monitored for compliance with it and so many respects in which, even if they are monitored, they fall down in relation to the common standards that ought to have been accepted. This has not been a priority for DFID and it ought to be, because economic growth is the one thing that we can probably all agree assists in the prevention of poverty.

The prevention of poverty in the developing world is important not only because it is the right thing to do, which is why we stand behind the 0.7% target, but because it secures the national security of this country and its citizens. Will the Minister say a little more about how DFID will influence the sustainable development goals and how it will drive them and ensure there is a robust healthcare system in the developing world? Will he also say more about the corruption that takes money from the poorest people in the world? If the Minister can reassure us on that, we will all know that the Government are moving in the right direction and that the world is moving in the right direction with regard to the goals.

4.54 pm

Dr Philippa Whitford (Central Ayrshire) (SNP): I also would like to make a declaration. I am still a Scottish Catholic International Aid Fund ambassador for south-west Scotland, although I am not sure how long I will manage to do that along with this role. Through SCIAF, I had the opportunity to visit AIDS projects in Kenya and Tanzania in 2006. Others have referred to Make Poverty History, and I remember traipsing off to Edinburgh with my 11-year-old son, who is now a big 21-year-old man. Although some things have improved, they definitely have not improved enough. I commend the reference to the devolved Governments, where there is expertise. The issue is reserved, but certainly in Scotland we have been active and I would like to see Humza Yousaf, our Minister for Europe and International Development, included in the summit, because devolved Administrations have things to say.

How we deal with other people matters, as well as our understanding of aid for trade and aid for defence. We have been talking about TTIP, the Transatlantic Trade and Investment Partnership, for the past couple of years, but we now have a TiSA, a trade in services agreement, that tries to ensure that developing countries, and indeed developed countries, are forced to have a more private basis of service provision, so they could not emulate the health provision that we have here. In developing countries it needs to be done in the simplest, cheapest way. Setting up private systems means the wealthy getting healthcare and illness lying at the bottom levels, so that we never eradicate polio, never control malaria and certainly never control Ebola.

Stephen Phillips: I do not know where the hon. Lady got from my remarks that I was advocating private healthcare in the developing world. I am advocating a robust healthcare system supported by donor countries and non-governmental organisations.

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Dr Whitford: I am sorry; I did not mean to imply that that was coming from the hon. and learned Gentleman’s comments. I was respecting his comment that such countries need help to have a robust health system. But TiSA is out there. It is not very much on our horizon, but within Europe people are already beginning to see it coming and seeing the impact it would have in Europe and developed countries and also in developing countries. We should look at the unsustainable debt and at the terms that are often laid down when a country has to borrow: we need to ensure that we are not, as it were, shackling both its ankles and one arm together and then sending it off to do things.

One important thing not within the sustainable goals is climate change. We must recognise the absolute disaster that is coming. We are currently dealing with refugees coming from north Africa and the near east because of conflict, but the Sahara is expanding. Current wars have been about oil; future wars will be about water. As the Sahara expands in both directions, populations will be driven into other territories. What we see in the Mediterranean at the moment will pale into insignificance compared with what we will see in future. That needs to come into our policies. It needs to come into everything we do; it must not just be the international development group, which is not included in anything else.

We absolutely need to look at our own behaviour, how we generate power, how we produce things and what we use. We take some weird approaches in looking at how we produce energy. We make the world price of food go up so that we can put it in cars and go on driving bigger cars. We say that nuclear is the solution to the carbon dioxide problem, despite the massive CO2 released in the production, building and commissioning of a nuclear power station. We must look at these things in the round. Individuals, and the Government who lead individuals, need to look at our obsession with consumerism. We think sticking in a low-energy light bulb lets us off the hook, yet we are obsessed with stuff. Do we really need more gadgets? Do we really need up-to-the-minute fashion? Unless we look at every level, led by and promoted by the Government, we will not change quickly enough. It is poorer people who pay the price, through climate injustice, for our behaviour.

4.59 pm

Albert Owen (Ynys Môn) (Lab): It is a pleasure to serve under your chairmanship for the first time, Mr Turner. I welcome the Minister to his new appointment, and I congratulate the hon. Member for Glasgow North (Patrick Grady) on securing the debate. A lot of what I wanted to say was said by the first few speakers and by the hon. Member for Central Ayrshire (Dr Whitford), but I will concentrate with a lot of optimism on some of the goals outlined on climate change, energy and sustainability.

We need joined-up thinking between the Department of Energy and Climate Change and the Department for International Development. We need to work together. In the past, Departments have tended to work in silos. That is why I mentioned in my intervention the need to co-operate with the devolved Administrations. I have seen some very good practice in Wales, such as the bilateral agreement between Wales and Lesotho, with links between the schools. They are going out to educate young people there. Link-ups through modern technology

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are also easy to do. Many primary schools in my constituency of Ynys Môn have live link-ups to see exactly what life is like there.

I must make a declaration: I have never done anything in the conventional way. I left school at 15 and went into the merchant navy. I saw with my own eyes some of the extreme poverty and extreme wealth across the world, and it shaped my life and my politics in many ways. It is important in this modern 21st century that young people have those links with the developing world.

I congratulate the Government on some of their work, particularly on Ebola. There has been a great coming together of the world’s health organisations and this country’s national health service to provide essential skills to help eradicate that disease. Good work is being done. I am proud that the United Kingdom has a Department for International Development, and I was proud when it was set up. I am also proud of the Climate Change Act 2008. The theme of my speech is that we need to link those two together. We need to understand, as the hon. Member for Central Ayrshire said, the importance of weaning countries that have developed on fossil fuels off them.

This is a golden opportunity for countries that do not have the infrastructure or the legacy from oil and gas and that can adapt many of the new technologies being developed across the world. Solar energy, for example, can go into villages in isolated locations around the world. We can have new schools and clean water because we will have the electricity to provide the pumps in those areas. That is a great opportunity.

Goal 7 talks about ensuring

“access to affordable, reliable, sustainable, and modern energy”.

One problem in industrialised countries such as the United Kingdom is that our energy facilities are ancient and need to be rebuilt and retrofitted in many ways. Newer, underdeveloped countries have the opportunity to start from day one, but we have to learn and do it by example. We are doing well with our goals on renewable energy. The hon. Lady and I will not agree on nuclear power, but I believe that it will help us to reduce our carbon emissions. We in the United Kingdom have 1% of the world’s population but produce 2% of carbon emissions. We need to reduce that. Nuclear technology can help us to do that, but we have to lead on it.

With these two big conferences coming up in New York and Paris, I hope that the Minister will assure me that he, the Secretary of State for International Development and his Department are talking with the Secretary of State for Energy and Climate Change so that we have joined-up thinking. We can then go on to the world stage, lead by example and use our expertise in a positive way to combat climate change and its impact on lesser developed countries.

I have a few final things to say about Scotland, Wales and Northern Ireland before the hon. Member for Glasgow North replies—is that how it works? The Department for International Development needs to get out more, to be absolutely frank. It needs to go to East Kilbride, where the Department has an office. It needs to go to the Welsh Assembly and Belfast to see the good practice in the devolved Administrations, as well as to the regions of England. Rather than talking to ourselves here in the UK Parliament, we need to go out and learn from the best examples. We can then hopefully go to these summits, speaking and working

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with the devolved Administrations, to put the case for all parts of the United Kingdom and show leadership across the world. These are important summits. We want to be present and we want to make a difference.

Finally, I will talk about the Make Poverty History campaign. Although I indicated that I did not do things in the conventional way and went to sea at 16, the Make Poverty History movement really excited me because it brought together the Churches, non-governmental organisations and real people across this country. That was the important thing about that movement, and it left us with these development goals. We are now going into round 2, and we must ensure that the goals are meaningful and that they work.

Mr Andrew Turner (in the Chair): There are 22 minutes left for the major parties, followed by Mr Grady for two minutes.

5.6 pm

Mr Gavin Shuker (Luton South) (Lab/Co-op): It is a pleasure to serve under your chairmanship, Mr Turner, and to be back in Parliament for this important debate. I congratulate the hon. Member for Glasgow North (Patrick Grady) on an excellent opening speech that set the tone for the rest of the debate. I offer my extended congratulations for the first time to the Minister and welcome him to his role. He will already know from the short time he has been there that the Department for International Development is a fantastic Department to work in and alongside. It works on tackling many of these issues. We already share something in common, which is a very similar name. I have learned that over my five years in Parliament, because the postman here does not always deliver with 100% accuracy. I have noticed that the Minister’s invites are often printed on considerably thicker card than mine. Now that I am shadowing him in this position, I hope that we will tackle that inequality as well.

We live in a global society, yet every 10 seconds a child dies from hunger and malnutrition. Even after the millennium development goals come to an end this year, nearly 1 billion people will still be living in extreme poverty. Hundreds of thousands of women die each year during pregnancy and childbirth, and a population of more than three times the size of Birmingham dies each year purely from water-related diseases. To stand aside and allow that to continue when we may take action is to perpetuate a great injustice. Ours is the generation that could see the end to extreme poverty, reduce inequality and tackle climate change. It would be easy in the current climate to turn away from tackling some of the world’s most intractable problems.

The thread that connects the key issues we face of climate change, economic crises, disease and conflict is their global and interdependent nature. This year is a unique opportunity for the world to see a realignment and a new settlement of institutions and shared action that can tackle those threats. The agreement to be secured in September on the replacement of the millennium development goals will take place at one of the two crucial summits this year. As Members have said, we will also hopefully agree a framework in Paris in December to tackle climate change into the next generation. The Labour party stood on a manifesto that promised to prioritise those global accords, as well as twin and

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related ones. We are determined to hold the Government to account throughout this Parliament to ensure that Britain’s reputation as a leader in international development —a reputation hard-fought and hard-won by the previous Labour Government—endures.

There have been valuable contributions in today’s debate. My hon. Friend the Member for Liverpool, West Derby (Stephen Twigg) went right to the heart of what our focus needs to be in the coming months in his comments about inequality. The hon. and learned Member for Sleaford and North Hykeham (Stephen Phillips) made a powerful contribution. Some of his most interesting comments were about the disconnect between the 17 goals and 169-odd targets currently in the zero draft, as well as the desire that I am sure we all share for those goals to be clearly explained. That probably means having fewer of them. The hon. Member for Central Ayrshire (Dr Whitford), in speaking about her own experiences, brought home how powerful it can be to confront the reality of extreme poverty and inequality, as well as the hope that many people hold not just for their own lives but for their whole community. My hon. Friend the Member for Ynys Môn (Albert Owen) spoke not just about co-operation at UK level, in which I believe passionately, but about the experiences that we can garner from devolved Administrations, such as the Government in Wales, which I know from my own experience has been hugely inspiring in tackling these issues at community level as well.

Some specific concerns were also raised, and I will go through them one after the other. We have discussed the fact that the sustainable development goals are there not just to eradicate extreme poverty but to tackle growing inequality. We put particular emphasis on that in our manifesto. Gender, caste, race, community, disability, religion, age and ethnicity all too often determine people’s life chances. Health, education, jobs and participation are increasingly determined at birth, so we promised to prioritise human rights, climate change and universal healthcare in a bid to tackle that growing concern.

Health inequality is one of the most debilitating inequalities that someone can experience. As the party of the NHS, we want everyone to enjoy the protections that we in this country take for granted, and we are committed to providing the global partnerships, support and encouragement needed to countries that want to provide healthcare for their own citizens. Therefore, it was welcome to hear the Secretary of State say two weeks ago at the Dispatch Box that the Government

“have advocated very strongly for universal health coverage that truly makes a difference to people and puts them in a position to be able to play a role in helping to develop their country.” —[Official Report, 3 June 2015; Vol. 596, c. 575.]

That is particularly welcome because it stands in stark contrast to the previous Secretary of State—who also happens to be the current Secretary of State—who failed to provide before the election for universal health coverage in the post-2015 agenda and refused to support a stand-alone goal on universal health coverage. Most devastatingly, she cut her Department’s direct support to health systems year by year, creating the conditions in which Ebola went unchecked for too long. Can the Minister outline what steps the UK Government will take in the light of their new position on the crucial agenda

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of universal healthcare? Will they push for universal healthcare, in the language of the goal on healthcare, in the room in September?

Last week in the Chamber, I spoke about how climate change will be seen as development in reverse. The world’s poorest face rising sea levels, droughts and storms. When one’s very survival is under threat from natural disasters, thriving diseases and conflict over resources, economic development can often become a romantic ideal. We remain concerned that, despite those clear links, the zero draft of the outcome document is still unambitious on that agenda, allowing goal 13 to remain essentially a holding text for an agreement that has not yet happened and whose start date and implementation is five years from now.

That is why I urge the Secretary of State and the Minister to ensure in September that climate change remains a stand-alone goal in the post-2015 SDGs, with a 2º global temperature rise embedded in the language of the goal. That may seem dry, but the lesson of the millennium development goals was that their language was hugely important for focusing minds and measuring progress. Will the Minister say a few words on that issue as well?

This debate is about more than just negotiating the language of the sustainable development goals; it also needs to be about their implementation. We particularly welcome the opportunity to hear what the new Government see as their priorities within that expansive agenda. As the hon. and learned Member for Sleaford and North Hykeham said, it might be difficult to galvanise political will around 17 goals and 169 targets. Is it the UK Government’s position to have fewer goals and greater focus on each of them? If so, what will those goals be?

There are questions about this Government’s global leadership. When the Prime Minister was appointed co-chair of the high-level panel, we were disappointed to see that he attended only half the meetings. In that context, how does the Prime Minister mean to go about negotiating the SDGs, especially given that key issues such as climate change have fallen off the agenda in meetings that he has chaired in the past? It took Germany’s Chancellor to put climate back on the agenda in the most recent G7 discussions.

The all-embracing nature of the zero draft risks prevarication and duplicity, potentially enabling Governments to address selectively those goals and targets most aligned to their existing agenda, while failing to challenge the more complex and formidable issues that we face.

Stephen Phillips: Does the hon. Gentleman agree that there is also the difficulty that unless there is effective monitoring, there may be differences within regions and indeed countries? The sustainable development goals might be properly implemented in some areas, or efforts might be made to do so, but rural areas in particular in the developing world might simply be left behind because everybody is concentrating on the capital cities.

Mr Shuker: I agree completely with that well-put point. I add that one challenge that everyone in our generation must face following the negotiation of the first millennium development goals is increasing urbanisation, which could leave some people even more disconnected. On issues such as universal healthcare, the problem

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becomes obvious: how can a healthcare system reach out across all communities? Monitoring will be key, which is why we have called for the disaggregation of data in the results produced through the process.

We believe that we have been clear about our priorities, and we ask the Government to be equally clear in their negotiating position, to tackle inequality, ensure the attainment of the human rights—including the fundamental rights of women and girls—that remain at the heart of the agreements and combat climate change. Not just now but in Paris in December, I hope that the Minister is willing to match our ambitions in the field.

5.17 pm

The Minister of State, Department for International Development (Grant Shapps): It is fantastic to see you back in the Chair, Mr Turner, and a pleasure to serve under your chairmanship. I congratulate the hon. Member for Glasgow North (Patrick Grady) on securing this debate, right up front at the beginning of this Parliament, on an issue about which I know he is passionate and has a great deal of knowledge and expertise through the Scottish Catholic International Aid Fund and through the incredible Scotland-Malawi partnership, which runs incredibly deep. As the hon. Member for Central Ayrshire (Dr Whitford) also mentioned, it is threaded through everything that goes on in international development in Scotland.

I was in East Kilbride only last week and, as the hon. Member for Ynys Môn (Albert Owen) will be pleased to hear, I will no doubt be going to the Welsh Assembly soon. One thing that I discovered there was that—I think I have these numbers right—some 157 primary schools in Scotland have direct links with Malawi, as do more than 900 different non-governmental and similar organisations and 47% of Scots. That is absolutely extraordinary, impressive and commendable, and we will seek to replicate it in other important areas of development during this Parliament.

This is a fantastic debate to have, and it has been good-natured, with some extremely important points raised. I will pick up on some of them. The hon. Member for Glasgow North mentioned the principle of dignity on behalf of some NGOs. The UK Government support the concept of dignity in development; it is absolutely right, and we welcome the Secretary-General’s report on dignity. He makes the intelligent point that prosperity and dignity, while allied, are not exactly the same thing.

As the new guy to this subject, I know this is the most fascinating topic that the Government have to deal with—perhaps only we in this Chamber know that. As the hon. Member for Liverpool, West Derby (Stephen Twigg) said, the number of people living on $1.25 a day, although falling, is not yet down where we need it. However, it is interesting that people are now living for a decade longer than they were in the 1960s, even though their income is not necessarily higher. Also, more children are going to school now. Whereas in the 1960s, only half the kids of primary age went to school, now 90% of children in the world go to school. The world is somehow getting better without prosperity necessarily rising, although we want to see that, too. However, dignity is absolutely key to this process and the hon. Member for Glasgow North is right to raise it as an issue.

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The hon. Gentleman asked a direct question about the representation at the summit on sustainable development goals; the hon. Member for Central Ayrshire also referred to that. I assure both hon. Members that although the summit is in September—so still a little way away—and the exact composition of the delegations is still being worked through, I heard what they said and I will reflect on it.

There was a rather transient comment, which is none the less important to respond to, about what on earth having Trident does for supporting development goals. The answer is, quite simply, that it has prevented the world from getting into all sorts of trouble in the last 60 or so years. I will say no more about that now, but I believe that being on the Earth is an important objective in itself, rather than our being entirely wiped out.

The hon. Member for Liverpool, West Derby made some excellent points, including about the cross-governmental nature of the Department for International Development’s position. I can reassure him by saying that I absolutely know for certain that the Secretary of State for International Development regularly attends the National Security Council; I can put his mind at rest on that. Indeed, one or two people touched on cross-Government working. The level of cross-Government working at DFID is the most impressive of any Department that I have been involved or been a Minister in, or have seen operating.

I think the hon. Member for Ynys Môn asked about DFID working with the Department of Energy and Climate Change on the climate change agenda for international development. Again, the Secretaries of State for both those Departments, and the Ministers in them, including me, all work incredibly closely across government on that agenda.

DFID is different from other Departments. It does not have a role in writing to the Home Affairs Committee to seek collective agreement on policy in the same way that the Home Office, or another domestic Department, has. However, I assure the hon. Gentleman that that absolute tie-in with other Departments, many of which have a strong role in and relationship with international development—indeed, they spend some of their budget on international development—is not missing. They include DECC, the Ministry of Defence, the Foreign and Commonwealth Office, and so on. There is a very close tie-in between Departments and international development.

My hon. and learned Friend the Member for Sleaford and North Hykeham (Stephen Phillips) made an excellent speech, which included the absolutely correct observation about the extraordinary fact that there are 17 goals and 169 targets. Those numbers are rather unwieldy, but the zero base document starts to get to grips with them. I think the document comes up with nine principles, which will be easier for people to understand. However, we are where we are with this whole process, and I do not think that anyone believes that we should go back to square one and start again; it is important that we push forward. However, our goals need to have a sense of clarity, and some of the suggestions made in this debate can play an important role in achieving that.

My hon. and learned Friend was particularly exercised by the healthcare systems in countries such as Sierra Leone and by their inability to respond to the Ebola outbreak and its consequences. I want to reassure him by saying that the UK’s chief medical officer will now work with the World Health Organisation—as my hon. and learned Friend said, WHO’s difficulties, given the

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tools that it had available to it, were rightly pointed out by all who saw its performance—to develop a new and more advanced system to share data on disease spread on the ground. The CMO will also work with health agencies, doctors and nurses on the front line. We, as a Government, absolutely intend to make certain that the lessons are learned from what happened in Sierra Leone and elsewhere, so that we do not allow the shortcomings that existed to become problems in any future outbreak of a different disease.

My hon. and learned Friend also zeroed in on corruption and he was absolutely right to do so. Anyone who has listened to the Prime Minister talking passionately about what he calls the “golden threads” will know that having secure institutions that work on behalf of a population, rather than against it, is absolutely critical to any sense of international development. We will simply make no progress without those institutions. Anyone who has read the book, “Why Nations Fail”, will know that it is one of the inspirations for the golden threads. I think that those “golden threads” are absolutely embedded in target 3.8—no, sorry that is on universal health care, so I will have to find the exact target for my hon. and learned Friend. It is actually goal 16, which is to

“Promote peaceful and inclusive societies for sustainable development, provide access to justice for all and build effective, accountable and inclusive institutions at all levels”.

I hope that will reassure him.

Stephen Phillips: The Independent Commission for Aid Impact produced a report in November 2014 that stressed that this area of corruption was one that DFID was not concentrating on and needed to; the report raised a number of red flags. Will my right hon. Friend give an undertaking to the House that he will go and look at that report, to see whether those issues are now being dealt with?

Grant Shapps: Yes, I am pleased to give my hon. and learned Friend that undertaking.

I will quickly move on to the energy questions that were put by the hon. Member for Central Ayrshire. She made very sensible points. I am absolutely amazed that 1.2 billion people in the world do not have any energy in their own homes. In a world where the price of solar is tumbling, batteries are becoming more available and micropayments are available in developing countries— for example, through the British-inspired M-Pesa system— there is no reason to allow that situation to continue. I intend to spend my time in DFID particularly focusing on bringing energy to domestic housing situations, and I hope that hon. Members from all parties will join me in that work.

In Tanzania, I met a woman called Elizabeth who can now power three light-bulbs and charge her mobile phone from a tiny solar panel on her roof that is no bigger than a sheet of A4. That has changed her life; it saves her money on kerosene, and we should spread that practice to all the 1.2 billion people in the world who do not have such energy.

I disagreed with the hon. Lady when she said that somehow consumerism in the west is to blame for the situation. I do not think that is the case, but I fear that, because time is running out, I will not be able to have a longer and more interesting debate about that point.

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The hon. Member for Ynys Môn talked about joined-up thinking, which I think I have covered, in addition to the visits that I have made to East Kilbride.

The hon. Gentleman and the hon. Members for Glasgow North and for Central Ayrshire will be interested to hear that I am going to Malawi next week, where I will do everything I can to push our relationship with Malawi and indeed learn from it.

Finally, I thank the hon. Member for Luton South (Mr Shuker) for welcoming me to my position. I can tell him that we have very strong plans. On inequality, for example, the UK is committed to an agenda that will end extreme poverty and build on prosperity for all. I can reassure him on that, as indeed I can on the language about climate change, where the goal is to take urgent action to combat climate change and its impacts, as a crucial part of our framework.

I would like to spend more time satisfying the hon. Gentleman about the issues he raised, but I know that there are only a couple of minutes left for the hon. Member for Glasgow North to respond to the debate.

5.28 pm

Patrick Grady: Thank you, Mr Turner, for giving me the opportunity to respond to the debate, and I also thank the Minister for his comments. I, too, welcome him to his post and I look forward to many exchanges with him in the coming years. He touched on a number of areas that we will probably revisit in the Chamber in the weeks and months to come.

I will respond briefly to three main points that were made during the debate. First, I chose the original title—“Negotiation and Implementation of the Sustainable Development Goals”—quite deliberately, because the window for negotiation is closing, and the time has passed for getting into a debate about the number of goals and so on. The opportunity now is to make the language as robust as possible, and the negotiations need to focus on collecting data and monitoring the impact of the SDGs.

The link with climate change, which was touched on, is also vital. It is mentioned; there needs to be a synthesis, and we have to respect the United Nations framework convention on climate change process. However, the language about climate change needs to be as robust as possible in the SDGs.

I am grateful to the Minister for his comments about the role of the Scottish Government. I look forward to hearing the outcome of his reflection on the question of Scottish representation at the summit on SDGs. No doubt we will continue to press him to find out when that reflection has been completed.

The contributions today recognise the importance of this issue. I am aware that in another place this evening there is a debate on exactly the same topic, which will be led by the former First Minister of Scotland, Lord McConnell, who is a champion of Scotland’s links with Malawi. Perhaps when the Minister comes back from Malawi we will have an opportunity to discuss his experiences there in detail, either formally or informally. Indeed, if he wants to speak to me—

5.30 pm

Motion lapsed, and sitting adjourned without Question put (Standing Order No. 10(14)).