Mitochondrial Transfer (Three-Parent Children)

Jim Shannon Excerpts

Wednesday 12th March 2014 Westminster Hall

[Jacob Rees-Mogg]

Thank you, Mr Prichard. Silence is golden.

The third risk is legal, and I am slightly reluctant to raise it because it concerns the European Union charter of fundamental rights. It is not a document I often quote in support of an argument, but there is a question about its applicability in the United Kingdom. It is not directly applicable in UK law except when it coincides with EU law. There is considerable debate about how far the overlap between UK and EU law goes. Article 3(2) refers to the

“prohibition of eugenic practices, in particular those aiming at the selection of persons”.

I have established that this is eugenics, so it would be in contravention of the Charter of Fundamental Rights. I do not believe that the Government would want to contravene that accidentally.

Essentially, the Government have started too early and are putting the cart before the horse, which makes travel difficult, by consulting on regulatory approval before sufficient research has been done into the safety of the therapy.

[Jim Shannon (Strangford) (DUP)]

I apologise for not being here earlier. The Northern Ireland (Miscellaneous Provisions) Bill was being discussed in the House and I had to be there.

Does the hon. Gentleman accept my concerns on behalf of the people of Northern Ireland who are very worried by what was suggested the other day—that the Department of Health is pressing forward with regulations without full consultation and without the impact being fully known? I hope that the Minister will assure us that that will not happen.

[Jacob Rees-Mogg]

It is essential with such a fundamental change in our understanding of humanity that it is made with the fullest consultation and parliamentary approval. I believe that the Government are sympathetic to that.

Care Bill [Lords]

Jim Shannon Excerpts

Tuesday 11th March 2014 Commons Chamber

My final point is that it is vital that the relationship of trust between a patient and a doctor is not lost. To ensure that that does not happen, patients must feel that their personal information that they disclose to a doctor will remain confidential. I do not think that people have that confidence at the moment, and much needs to happen to make sure that they will.

[Jim Shannon (Strangford) (DUP)]

I was under the illusion that there would be five speakers ahead of me, but I am none the less pleased to make some comments on amendments (a) and (b) to Government new clause 34, and on new clause 25. I thank the hon. Member for Totnes (Dr Wollaston) for setting the scene, and the hon. Member for Worsley and Eccles South (Barbara Keeley) for her contribution.

My inbox, like many others, has been full with messages from various charities on different aspects of the Bill. Having sat on the Care Public Bill Committee, I can well understand many of their concerns. I received a briefing from Cancer Research UK, as many other Members did. It was informative and clear, and raised points that I do not believe have been addressed in the Bill and require greater clarity through amendment.

Along with Cancer Research UK, I warmly welcome the clauses that will introduce the Health Research Authority as a non-departmental government body. I have the highest respect for the Minister, but last night clarity on this was sought by the shadow Secretary of State, the right hon. Member for Leigh (Andy Burnham), the hon. Members for Easington (Grahame M. Morris) and for Worsley and Eccles South (Barbara Keeley) and me. With respect, I do not think that Hansard gives the clarification that right hon. and hon. Members, Cancer Research UK and Macmillan are seeking. I am hopeful that the Minister will today be able to give us that assurance and clarity.

Clarification of the amendment of section 261 of the Health and Social Care Act 2012 is needed to ensure that access to data for research is not restricted on the basis of the amendment. Cancer Research UK states:

“While we appreciate the context of this amendment and understand that the motive behind it is to avoid inappropriate disclosures of data, we are concerned that the wording of this is unclear. We would like reassurance that access to data for researchers is included under ‘provision of health care and adult social care’ and that access to research data will not be restricted on the basis of this amendment.”

I hope the Minister will be able to provide assurance on that.

Cancer Research UK is one of the largest funders of clinical research in the United Kingdom of Great Britain and Northern Ireland. It is currently running more than 240 clinical trials, which in 2012 recruited some 37,000 patients. Clinical research is important to find drugs that work and treatment that saves lives. Today in Westminster Hall, we were made aware that with better access to new cancer drugs, 5,000 more people would be alive today and that many more lives could be saved. It is essential that we develop an understanding of both new and existing treatments, and that they are offered through the NHS. We therefore want to see a regulation and governance system in the NHS that promotes and supports research, while also protecting patients.

There has been significant controversy surrounding the proposed care data upload of GP records to the Health and Social Care Information Centre and there have been at least two debates in Westminster Hall on these issues where Members have expressed their concerns strongly. Concerns have been expressed that the public have been insufficiently informed about this upload and that data may be released inappropriately, for example to insurance or marketing companies. I know the Minister replied last night to my intervention, but the doubt lingers even today within Cancer Research UK, Macmillan Care and other charities that had expressed initial concerns. I have concerns regarding the nature of the release, but it was never my intention to restrict data going to the likes of Macmillan or Cancer Research UK to aid in their fight against the scourge of cancer.

[Barbara Keeley]

I read a blog article this morning written from the point of view of people with disabilities who had real concerns about the mention of insurance providers. It is often very difficult for people with serious conditions to get insurance, even travel insurance, and the notion that their medical data are being linked to insurance information, or might be sold in future to companies that are insurance providers—even if those are health and social care providers—is a real worry for them. They are really fearful about this and I think we would see a mass opt-out by people who have that fear.

[Jim Shannon]

That is the issue, summed up in a couple of sentences. The Minister may look to his civil servants for some direction; he may have it already. If so, that is good news.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

May I reiterate what I said many times in my opening remarks, which I hope will be helpful to the hon. Gentleman? Clear safeguards are being put in place to ensure that the data cannot be used for insurance purposes. I give that reassurance again today.

[Jim Shannon]

Earlier I referred to Macmillan and to Cancer Research UK who, even today, are not convinced. We make these points on behalf of our constituents and the groups that lobby us.

[Dr Wollaston]

Does the hon. Gentleman agree with many commentators, including the British Medical Association, that it would help if the remit of the confidentiality advisory group could be extended from currently just looking at patient-identifiable data to looking at pseudonymised data or potentially identifiable data? That would give further reassurance that there is more oversight so that we do not see the kind of instances that many people are expressing concerns about.

[Jim Shannon]

The hon. Lady is right that the amendments would go a long way to addressing that issue. I hope that the Government take that on board.

In response to the fears expressed by many, several amendments were tabled to clarify the circumstances in which the Health and Social Care Information Centre will be able to release data. We need further clarification of the provisions concerning the dissemination of information, which suggest that the information centre may disseminate it only if it considers that doing so would be for the purposes of the provision of health care and adult social care. Clarification is needed for those charities that have contacted many of us in the Chamber. Cancer Research UK, among other worthy causes, would like reassurance that access to data for research is included on the

“provision of health care and adult social care”

and that access to research data will not be restricted on the basis of the amendment. That is the reason I support the proposals.

Cancer Research UK has said that it particularly welcomes the Government’s inclusion of proposals that would give the Health Research Authority the ability to accept guidance on how the governance of particular research should be handled by the NHS trusts and their duty to adhere to it. These proposals were added following calls from Cancer Research UK and the medical research sector, and were supported by many parliamentarians during the pre-legislative scrutiny of the Bill of which I, with others, was a part.

Governance continues to be the primary barrier to conducting research in the NHS. A single trial can take place across multiple trusts, so obtaining governance approvals from each participating trust, which may have different approval criteria and often duplicate checks, can cause significant delays. New clause 25 would put in the Bill the firmness, accountability and legislative control that is necessary to ensure that the leakage, for want of a better word, of information does not take place. It is important that we do that.

In conclusion, statistics indicate that by 2020 one in two people will get cancer. We had a debate in Westminster Hall this morning on cancer care; it was passionate and well thought out by many Members with personal experience of cancer in their families and their constituencies. The enormity of cancer and what it will do to society is why we have a responsibility in the House to ensure that we help. The need for research and new treatments for cancer is greater now than ever. We must ensure that while protecting people from the unsafe or mercenary use of personal information, we are not hampering the fantastic work done by these charities to discover more about cancer and to help more people win their personal battle. I support these amendments and I ask the House to do the same.

[Sarah Newton]

It is a great honour to follow the hon. Member for Strangford (Jim Shannon), who touched on an incredibly important point: we must not forget the people whose lives have already been transformed by research organisations’ access to data to find cures and prevention for diseases such as cancer. There cannot be anyone in the House who has not been touched by cancer, personally or within their families. It is incumbent on us all to do everything we can to create the right ecosystem and regulatory environment to enable research that will have a life-saving and transformative effect for people.

Cancer Treatment and Prevention

Jim Shannon Excerpts

Tuesday 11th March 2014 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to follow the hon. Member for Lancaster and Fleetwood (Eric Ollerenshaw). His Adjournment debate last week is still fresh in the minds of all hon. Members here. I also thank the hon. Member for Mid Derbyshire (Pauline Latham) for bringing this matter to the Chamber for consideration. Many learned hon. Members will speak today and make a massive contribution to this debate. I look forward to their contributions.

By 2020, one in two people who hon. Members meet in the street will be affected by cancer. That is the magnitude of the issue. The hon. Gentleman passionately advanced the appeal on behalf of those with pancreatic cancer. I will not repeat what he said, but I will speak about pancreatic cancer because I know a number of people who have been affected. The hon. Lady referred to her brother, and my father had cancer on three occasions. The skill of the surgeon’s knife, the care of the GP and nurses, and the prayer of God’s people all contributed to his reaching 84 years of age, which is marvellous given that he had his first experience of cancer at the age of just over 60.

The shocking statistic of one in every two people hits home to each of us and gives us the impetus to contribute today and to plead for the cancer drugs and the help that we need. If we cannot see those changes today, when will we see them? Last Friday night I held a public meeting in my constituency on cancer services at the Ulster hospital in Dundonald, which is the closest hospital to me. We are seeking a modern cancer care centre. As an elected representative, I know so many people in my area who have passed away due to cancer, but I know so many more people who are being diagnosed with cancer. I am sure that the situation in Strangford is no different from the situation in any other constituency. Every day in Northern Ireland 25 new people are diagnosed with cancer, which equates to 1.3 people a day in my constituency of Strangford and 1.3 people in the neighbouring constituency of the hon. Member for North Down (Lady Hermon). The figures also reveal that in Northern Ireland the overall rate of cancer diagnosis climbed by a 10th between 1993 and 2011, which is a clear statistical indication of the problem. In 1993, some 370 people per 100,000 were diagnosed with the disease, which increased to almost 405 per 100,000 in 2011. Overall UK figures show that 331,487 people were diagnosed with cancer in 2011, rising from 329,547 in 2010.

The most common form of cancer in Northern Ireland is breast cancer, with some 1,300 cases in women and 340 deaths a year. There are 1,200 cases of bowel cancer and 410 deaths each year. The figures for lung cancer are horrific: 1,100 cases and 910 deaths each year. Lung cancer is almost a death sentence. There are 1,000 cases of prostate cancer and 230 deaths each year. Men are probably worse affected by cancer because we do not acknowledge that we are ill, so prostate cancer needs to be advertised to make men more conscious of it. There are 340 cases of non-Hodgkin’s lymphoma and 130 deaths each year. Those are the statistics only for Northern Ireland, which has a population of just under 1.84 million. That is not even a quarter of the population of London, which gives an idea of the magnitude of the cancer problem. I look forward to the contribution of the hon. Member for Basildon and Billericay (Mr Baron) as we have previously discussed the problem, which we both understand.

I recently attended an ovarian cancer awareness event at Stormont. The hon. Member for Scunthorpe referred to ovarian cancer in his intervention, and I am personally aware of the terrible statistics in Northern Ireland. Una Crudden, a wonderful, courageous lady from west Belfast, talked about her experiences at the debate in Stormont last Monday. She was one of five people diagnosed in her area. The other four are dead, and she is the last one to survive. We were all touched and shocked by the figures and by her presentation, which knocked it home to all of us that there is a desperate need to lift the profile of ovarian cancer.

As we all know, early detection saves lives. The fact is that, if there is an early diagnosis, up to 90% of women with ovarian cancer could survive for five years or more. The survival rate for ladies diagnosed with ovarian cancer in my Strangford constituency, and in the local Ards borough council area, is no more than 36%. Again, those figures are horrific and horrendous. Many women would never dream that if they had a swollen stomach or pain, or if they always felt full, it could be ovarian cancer. Each year, more than 7,000 women are diagnosed. If detected early, the survival rate can be as high as 70%, but sadly many people simply put the symptoms down to irritable bowel syndrome. Early detection makes a difference, and I stated at Stormont that we need an awareness scheme not unlike the scheme that I supported in a Westminster Hall debate in 2011. I cannot recall who the Minister was, but that debate led to an initiative in England to raise awareness of ovarian cancer. That scheme has undoubtedly saved lives, for which the then Minister and the Government should take credit. A lady with ovarian cancer was over at Stormont last week, and she was very grateful for what the Government have done.

As the hon. Member for Lancaster and Fleetwood (Eric Ollerenshaw) said, it is important to re-emphasise the treatment and drugs that are available for pancreatic cancer. I was contacted by Pancreatic Cancer UK about its “Two More Months” campaign. Would we not all love to have another two months of life to interact with our family and put our affairs in order? Pancreatic cancer has the lowest survival rate of the 21 most common cancers. Five-year survival rates are less than 4%, and the figure has barely changed in nearly 40 years. Pancreatic cancer five-year survival rates lag behind those in many other EU countries and are almost half of the five-year survival rates in the US, Canada and Australia.

As the hon. Gentleman said, most pancreatic cancer drugs are expensive, but they are vital to those with pancreatic cancer. Will the Minister talk about ongoing drug trials and the drugs that are available? What steps have been taken to reduce the price of those drugs? The drugs range in price from £21,000 to £100,000 per year per person. I am the first to say that we should make those drugs available, and I am sure everyone here is of the same mind. At the same time, there have to be discussions with the pharmaceutical industry to see what it can do to reduce those prices, too.

Only 1% of the total research spend of National Cancer Research Institute partners is directed at pancreatic cancer, which underlines the dire need in that sector. Some £3,613 per death per year is spent on breast cancer—I am not saying that that money should not be spent on breast cancer—compared with £553 per death per year on pancreatic cancer. Some 50% of pancreatic cancer patients are diagnosed as a result of emergency admission, which is nearly twice the rate for all other cancers combined. Patients diagnosed as a result of emergency admission, compared with other routes to diagnosis such as routine GP referral, have significantly lower rates of survival.

Earlier this year, as the hon. Member for Lancaster and Fleetwood said, Abraxane, in combination with standard chemotherapy and Gemcitabine—my pronunciation is probably wrong, but I have a Northern Ireland accent, so I hope Members will excuse me—was licensed for use in patients in the UK and Ireland with metastatic pancreatic cancer. Abraxane has been described as the biggest advance in pancreatic cancer treatment in almost two decades, which is good news, given that survival rates have barely changed in 40 years. As Abraxane has not yet been approved by NICE, however, it is not yet available on the NHS. I repeat the hon. Gentleman’s question: when will Abraxane be available? If the tests show that the drug is effective, it should be made available as a standard treatment. Pancreatic Cancer UK is keen to ensure that patients are able to access Abraxane through the Cancer Drugs Fund, and I understand that a decision is due within the next couple of weeks. Will the Minister outline her thoughts on the drug?

I could mention many other cancer drugs, but in my last brief moments I ask the Minister to consider a UK-wide strategy. I suggested such a strategy in the Adjournment debate last week, and it is important that we do not consider such drugs regionally. We have expertise in the different regions of the United Kingdom of Great Britain and Northern Ireland, which includes Scotland, Wales, Northern Ireland and England, but it is time that we had a strategy that brings everything together across the whole UK on an equal basis so that we can make the drugs and treatment available. The strategy should include regional assemblies promoting awareness among the general public.

I suggest that we have refresher courses for GPs. One of the issues that has emerged recently—it is not a criticism, because I am not a person who likes to criticise; it is simply an idea for how we can make things better—is that GPs are not always totally aware of issues. The hon. Member for Mid Derbyshire said that her brother went to the GP three times, and we can all give similar examples from our own constituencies. The refresher courses would ensure that the latest criteria and pro forma for testing were entrenched in GP minds, so that they were clearly thinking about what the patient’s problem could be at its worst. Many cancers that are curable, such as melanoma, must be detected early. If they are not detected early, they are no longer curable but deadly. That is the reality. It is scary to think that in six years, half of the people in this room will get a form of cancer during their lifetime. Something must be done and today must be the first day of a new strategy and new moves to beat cancer.

--- Later in debate ---

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship again this morning, Mr Gray. I congratulate the hon. Member for Mid Derbyshire (Pauline Latham) on securing the debate, and thank her for sharing her personal connection with its subject.

Every two minutes someone in the UK is diagnosed with cancer, and more than one in three people in the UK will at some time develop some form of cancer. One in four of them, sadly, will die of it. Cancer touches every community, without exception. Its reach is wide and its impact devastating. We have won many important victories in our battle against cancer, but there is a long way to go to ensure we are diagnosing it earlier, treating it more effectively, and preventing it in the first place. Many hon. Members have focused on those things in the debate, and I want to discuss them.

Detecting cancer early can make a real difference. When cancer is diagnosed at an early stage, the treatment is often simpler and the outcome is more likely to be positive. The hon. Member for Strangford (Jim Shannon) shared some startling statistics about the impact of early detection on ovarian cancer survival. Developments in cancer screening and increasing efforts to promote public awareness, such as the Be Clear on Cancer campaigns, are welcome. On Saturday, I saw the great work being done by those campaigns when I joined a team at a shopping centre in Liverpool to raise awareness of ovarian cancer in women.

Encouraging people to visit their GP sooner rather than later if they have any symptoms of concern is a simple message that can make a big difference. However, we have further to go to ensure that GPs are getting the training and support that they need to help them identify cancer signs and symptoms. Several hon. Members have raised concerns this morning about the amount of training of that kind that GPs receive. I hope that the Minister will respond on that issue in particular. I share the alarm expressed by the hon. Member for Basildon and Billericay (Mr Baron) about the fact that too many cancers are detected in accident and emergency.

Improvements at the first point of contact are not enough if, once cancer is suspected, people are not seen quickly enough by a specialist. Before Christmas there was concern at the news that in as many as half of cases the Government are missing their target for 95% of people with suspected cancer to be seen by a specialist within two weeks. It was right that Labour introduced the two-week cancer guarantee. We also left plans in place to speed up diagnosis, but unfortunately it appears that focus has drifted a bit from that important part of the fight against cancer. I am keen to hear the Minister’s comments on what further steps the Government are taking to improve early diagnosis.

If cancer is diagnosed, people need to feel safe in the knowledge that they are going to receive the most effective treatment possible, as quickly as possible. Many hon. Members expressed concern about that this morning. The hon. Member for Basildon and Billericay said that if we reached the average European survival rates we would save an additional 5,000 lives. I think that we can do better than that. Despite improvements in survival and mortality in recent decades, cancer outcomes in England remain poor when compared with the best outcomes across Europe. The hon. Members for Mid Derbyshire and for Lancaster and Fleetwood (Eric Ollerenshaw) mentioned the Cancer Drugs Fund and raised the question of its future, and I share their concern.

In more than 90% of cases when cancers are cured, it is as a result of surgery or radiotherapy. That is where our focus and resources should be directed. I welcome the Government’s recent focus on radiotherapy, and, in particular, on access to intensity-modulated radiation therapy. Last week I visited the Clatterbridge cancer centre in Merseyside, which treats 26,000 new patients every year, and saw how cutting-edge treatments are positively affecting patients’ lives.

Last week, however, we heard that the Prime Minister’s pledge that, from April 2013, all cancer patients would receive the advanced radiotherapy treatment they need, where it is clinically appropriate and cost-effective, has not been met. A less than glowing report published by Cancer Research and NHS England last week said that

“more needs to be done”

to achieve the Prime Minister’s guarantee. The report describes how momentum has been lost during the transition resulting from the NHS reorganisation in England, and it identifies a number of challenges on which I hope the Minister will comment.

One concern is that ageing equipment is preventing centres from keeping pace with innovation and providing advanced techniques. Another key concern is about deficiencies in the numbers of staff in crucial positions such as physicists, therapeutic radiographers and clinical oncologists. When I visited Clatterbridge last week, I heard first hand from the management how they are struggling to get physicists in the hospital.

There is also concern about the shortfall in radiotherapy work force capacity across the services, which impinges on the ability to deliver advanced techniques and innovate. On the number of radiotherapy treatments administered per 1,000 patients, we are well off the pace compared with other parts of Europe. While advances are being made, the pace at which innovations have been adopted across the NHS has been inconsistent. In Liverpool, cancer mortality rates are twice that of parts of London. Clearly, we still need to do much more about inequalities in access and outcomes for cancer patents. I hope that the Minister, in her response, will share with the House the Government’s plans in that regard.

Our battle against cancer will not be won with treatment alone. As the title of the debate suggests, we also need to look at prevention. More than half of all cancers could be prevented if people adopted healthy lifestyle choices such as stopping smoking, eating a healthy diet and exercising. I will focus on each of those in turn.

On smoking, great progress has been made in the past decade, but a quarter of cancer deaths are still linked to tobacco and smoking is by some margin the largest single cause of cancer in the UK. About 20% of our population smoke. That is down from 27% in 2000, but that figure is still too high. For every 1% decline in smoking prevalence, we could prevent about 3,000 deaths. Last month, Parliament voted in favour of an amendment to make Labour’s proposal of a ban on smoking in cars with children in them a reality. That great step forward will protect children and, ultimately, create a shift in smokers’ behaviour.

We are glad that the Government have agreed to standardised packaging; we look forward to Sir Cyril Chantler’s review. We are also pleased that the Government adopted our proposal to ban proxy purchasing of cigarettes. However, we must maintain momentum and ensure that those three victories are not pursued in isolation, but are part of a much bigger ambition. I hope that the Minister will share what more her Department is doing to reduce the number of smokers and smoking-related deaths, specifically in relation to the cancers that we are discussing.

Obesity is the second area for prevention and some of my biggest concerns are about the Government’s approach to tackling that. The voluntary responsibility deal stands little chance of delivering the fundamental change needed to improve our national diet. We need action that will impact on the whole population rather than the current piecemeal scheme that works on a product-by-product basis.

I was concerned to hear in the press reports relating to the World Health Organisation’s position on reducing our consumption of sugar, which leads to obesity. If what we read was correct, the view was that the Government might ignore that expert guidance. I hope that the Minister will respond to that and outline specifically what her Department is doing to tackle the obesity crisis in order to reduce cancer prevalence, because so many cancers are connected to obesity. On physical activity, to secure significant improvements in tackling the main causes of cancer, we need to see a fundamental shift in our nation’s behaviour.

[Jim Shannon]

To step back one sentence to the hon. Lady’s comments on better diet, and the need to have that at an early stage, many education authorities across the United Kingdom—they are doing this in Northern Ireland—are trying in schools to address children’s diets and the relationship of that to their parents and their family budget. Does she feel that education and health can play a joint role to help get the diet right at an early stage, which would prepare children for adult life?

[Luciana Berger]

The hon. Gentleman makes an important point about the role of education. A real intergenerational role can be played in education. If we educate our students and young people, they can play a role in informing and educating their parents and grandparents too. Some work has been done on that, but more can be done. I am concerned that when children start school, about 10% are obese or overweight, yet when they get to year 6, about a third are obese or overweight. That is a shocking statistic that we need to address urgently. I am working with my colleagues who shadow education on that and I hope that the Government are looking at what more can be done to affect the lifestyle and food choices of our young people to give them the best chances in life. A child with obesity will live on average nine or 10 years less than a child who is not obese, which is of serious concern and I thank the hon. Gentleman for making his point.

Labour is putting physical activity at the core of its public health policy. The easiest lifestyle change to make is moving from inactivity to activity and, once achieved, people can begin to feel better about themselves and more in control, and can then make better choices on smoking, drinking and eating, yet more than two thirds of our population fail to meet the minimum recommended levels of physical activity a week. I am concerned about the Government’s cuts, which have led to a reduction in local leisure services, which I have seen locally. The end of free swimming, for example, serves only to create further barriers to participation in physical activity. I would be interested to hear from the Minister on what the Government plan to do about that.

On prevention, the hon. Member for Mole Valley (Sir Paul Beresford) raised some important questions on vaccinations, specifically the HPV vaccination. I hope that the Minister will respond to those points.

Undoubtedly our national fight against cancer is going in the right direction, but is that enough? I do not think that it is. We have had a thorough debate this morning, with interesting and varied contributions. Collectively, we have touched on what needs to happen. We need earlier diagnosis, swifter access to the most effective treatment and an even stronger focus on prevention. We need bold, ambitious and concerted action on all three counts to ensure that we win not just the battle, but the war. I look forward to the Minister’s reply.

Care Bill [Lords]

Jim Shannon Excerpts

Monday 10th March 2014 Commons Chamber

[Dr Poulter]

I have not said anything controversial yet, so if the hon. Gentleman will let me make some progress, I will happily give way later.

To realise the huge potential of health care data, patients and professionals must have absolute trust in the way that the data will be protected and used, together with an understanding of why collecting the data on such a scale is important. I absolutely understand that many people have concerns about how the process might work, but I am confident that the Government amendments will bring further reassurance to the House about the care.data programme.

The Government fully support NHS England’s decision to delay the start of the care.data programme so that more work can be done to build understanding and confidence. NHS England will be leading that work. In parallel, having listened to key stakeholders and to discussions in this place, the Government have brought forward a package of measures, including amendments to the Bill, to respond to concerns and to give the public greater clarity and reassurance that their data are safe.

The Health and Social Care Act 2012, which established the Health and Social Care Information Centre, introduced a raft of safeguards to balance the huge benefits that linking health and care data can bring. That offered people greater protection than was previously available. It is worth highlighting some sections of the 2012 Act as examples of that.

Under section 260, the Health and Social Care Information Centre must not publish the information that it obtains in a form that would enable an individual, other than a provider of care, to be identified. Similarly, under section 261, the HSCIC cannot disseminate share data that could be used to identify an individual, other than a provider of care, except when there is another legal basis for doing so, which could happen in the event of a civil emergency or public health emergency, such as a flu pandemic. Under section 263, the HSCIC must publish a code of practice that makes it clear how it and others should handle confidential data. Under section 264, the HSCIC must be open and transparent about the data it obtains by publishing a register with descriptions of the information. Indeed, the HSCIC is currently working to ensure that it is transparent about all the data it has released to others.

Moreover, the Government have made the commitment that if someone has concerns about data being used in this way, they can ask their general practice to note their objection and opt out of the system. Following that, no identifiable data about them will flow from their GP record to the HSCIC. Directions to the HSCIC under section 254 of the 2012 Act—separate from the amendments that the House is considering—will ensure that that commitment to patients has legal force.

We are going further than that. Having listened to key stakeholders and to discussions in Parliament, we have a further package of measures that, in parallel with NHS England’s further engagement activity, will respond to the concerns that we have heard and give the public additional reassurance that their data are safe. Of course, aggregated and anonymised data, which cannot be used to identify any individual person, should and will be made generally available. Indeed, a great deal of research relies on data of this type, where researchers do not need to see any data at the individual person level. Such aggregated and anonymous data are available now, and were available previously through the predecessor body to the HSCIC.

New clause 34 sets out a number of changes to the 2012 Act which, taken together, clarify when the HSCIC can and cannot release data. The new clause expressly prevents the HSCIC from using its general dissemination power where there is not a clear health care, adult social care or health promotion purpose—for example, for commercial insurance purposes. I am happy to confirm that the new clause enables anonymised information to be disseminated under the HSCIC’s general dissemination power for a wide range of health and care-related purposes, including for commissioning for a wide range of public health purposes and for research relating to health and care services such as the epidemiological research that is needed at the earliest stages of developing new treatments.

[Jim Shannon (Strangford) (DUP)]

Can the Minister reassure us that there will be no possibility of private companies obtaining the data and using them for their own purposes, instead of their being used for their original purposes in accordance with NHS data protection regulations?

[Dr Poulter]

I hope that I have already given the hon. Gentleman some reassurance that the data will have to be used for the benefit of the health and care service, or for the purposes of public health. They are not to be used for insurance purposes, for example. I will go on to outline some of the safeguards involved.

Francis Report

Jim Shannon Excerpts

Wednesday 5th March 2014 Commons Chamber

[Mr Hunt]

We are about to hear from the shadow Health Secretary who will have the chance to put things right on that account. My hon. Friend the Member for Stone (Mr Cash) was extremely courageous, determined and persistent in campaigning for a public inquiry, and with the support of my predecessor and the Prime Minister, that is leading to the profound changes we are seeing today. We would all welcome the Labour party’s support for that.

I opened this debate by paying tribute to a few brave individuals who started a movement in England for safe, effective and compassionate care.

[Jim Shannon (Strangford) (DUP)]

Will the Secretary of State give way?

[Mr Hunt]

No, I am about to conclude. This afternoon it falls to this House of Commons to stand four-square behind that movement, so that one year of the Francis report becomes a lifetime of change for the NHS. We all want to say two words, “Never again,” but those words derive their conviction from what we do as well as what we say. However contrite we feel now, we should always remember that good people with good intentions stood at this Dispatch Box, and still an unspeakable tragedy was allowed to happen. We cannot rewrite history but we can, and must, learn from it.

--- Later in debate ---

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I want to talk about the Francis report, which detailed failures that were a betrayal of NHS values—we have heard repeatedly about those failures in this debate—but before I do so I will speak briefly about NHS change day, which shows so much that is good about the values of the NHS.

This week saw the second NHS change day. It is a front line-led movement, the largest of its kind, with the shared purpose of improving health and care. Its mission is to inspire and mobilise people everywhere—NHS staff, patients and the public—to do something better together to improve care for people. Hon. Members have until 31 March to make pledges for NHS changes, and it may be that Ministers and shadow Ministers will want to adopt some of them. Some inspirational pledges have been made that are making a real difference to care. An example I like is the “Hello, my name is...” campaign by Dr Kate Granger.

In December 2012, Dr Kate Granger was herself an in-patient, and she noticed how infrequently health care professionals introduced themselves. She wrote:

“As a healthcare professional you know so much about your patient. You know their name, their personal details, their health conditions, and much more. What do we as patients know about our healthcare professionals? The answer is often absolutely nothing, sometimes it seems not even their names. The balance of power is very one-sided in favour of the healthcare professional.”

It might seem astonishing that a campaign to encourage health care staff to introduce themselves to patients is needed, but it is an important part of the change in culture that people are trying to bring about.

Some 390,000 pledges have been made for the second NHS change day. It will run to the end of March, so that figure might reach half a million. This is a very good movement inside the NHS to improve care, in addition to the important matters we are discussing today. It is valuable that NHS staff, patients and carers are making pledges to do just that.

It is clear that staffing is one of the most important issues in the Francis report. The report talks about

“a lack of staff, both in terms of absolute numbers and appropriate skills”.

A survey of nurses published by Nursing Times one year on from the Francis report found that more than half those surveyed believed that their wards remained dangerously understaffed. Indeed, 39% of those who responded warned that staffing levels had worsened in the past 12 months. Various numbers have been bandied about during the debate, but that is a key factor. Only 22%—a fifth—of the nurses surveyed reported an improvement. I think it notable that more than half said that their own wards were dangerously understaffed, because that is the same percentage as a year ago. If understaffing was identified as an issue in the Francis report, it is still an issue now.

I believe that one pledge that politicians can make to improve care in the NHS is a pledge to support the Safe Staffing Alliance. The fundamental standard is a ratio of no more than eight patients to one nurse; other key aspects of safe staffing are use of a management tool to work out the safe staffing levels and the publication of staffing levels so that they can be seen by patients and their families. Let me repeat what I have said to Ministers a number of times over the last year, now that they recognise that Salford Royal is an excellent hospital. Salford Royal works out minimum staffing levels with a management tool, and publishes actual versus planned staffing levels on whiteboards on the wards every day. Again and again, we hear about failures in hospitals that, like the failure at Mid Staffordshire, are related to understaffing and the awful position in which it puts nursing staff. In another debate on this subject, the Secretary of State said:

“Salford Royal is one of the best hospitals in the country and we should always learn from what it does”.—[Official Report, 19 November 2013; Vol. 570, c. 1107.]

I hope that he will now start to take his own advice.

People in Salford were thrilled when Salford Royal’s chief executive, David Dalton, was knighted earlier this year. I believe that that was well deserved, because Salford Royal and David Dalton have done a huge amount to improve patient safety and reduce mortality. In its report “After Francis”, the Health Committee said that it had

“been impressed by the approach of Salford Royal NHS Foundation Trust to the development of a staffing management tool. This appears to the Committee to be good practice, and the Committee recommends the adoption of this or similar systems across the NHS.”

Other Members have also mentioned that.

The Health Committee also said—we keep returning to staffing levels—that

“Ensuring adequate levels of both clinically- and non-clinically-qualified staff in all circumstances is therefore a fundamental requirement of high quality care, whatever the financial circumstances.”

As I have said, that is a key point. It is clear to me what should be done to ensure safe staffing levels—we have that excellent example—but it is also clear to me that the Government’s proposal for monthly publication of staffing levels is not adequate. Robert Francis is a convert to the position of the Safe Staffing Alliance and has said that minimum safe staffing levels should be drawn up by the National Institute for Health and Clinical Excellence and policed by the Care Quality Commission. He did not say that in his report, but he has subsequently said it to the CQC.

As we heard earlier in the debate, the Francis report was published as the Government’s NHS reforms took effect. It is clear that the structural changes involved in their unnecessary top-down reorganisation have caused upheaval and created new problems. Many Members have talked about restructuring decisions today. Those decisions are proving impossible to implement in many parts of the country, because there is no one really in charge. The chair of the British Medical Association, Dr Mark Porter, made that point earlier this year. Reorganisation costs are another problem, because they have taken money away from patient care. Change of that kind has not improved care in the NHS and has worked against the recommendations of the Francis report. As we heard earlier, the findings of surveys identify the problems that have been caused: seven out of 10 NHS staff members think that the Government’s reorganisation has had a negative impact on patient care, while only 3% think that it has improved patient care. That is a vote against what the Government have done.

Nothing makes the impact of the reforms clearer than the deteriorating performance of A and E departments and the crisis in recruitment to them. It is interesting to note the Public Accounts Committee report this week, which is in a very similar vein to that of the Health Committee. We know that more patients are waiting in A and E departments for longer than four hours: last year the figure was 1 million, whereas in 2009-10 it was only 345,000. The numbers speak for themselves. We know, too, that emergency admissions have increased by 51% in the past decade, with a 26% rise in admissions of over-85s in four years. That is serious: the biggest cause of pressure on local A and E services is the rising number of frail and older people with multiple long-term conditions.

Some Members have questioned the relevance of this to the Francis report, saying we should not be discussing all these issues, but I disagree. If we are concerned about safety and mortality rates, what happens on admission to A and E is a key factor. The consequences if things start going wrong was well understood by Salford Royal hospital: more people were dying unnecessarily at the weekends because of a lack of consultant cover, so the hospital changed that. Work on safety does not ignore what is going on in A and E or how much consultant cover there is; instead, it takes that into account and does something about it.

I am concerned that the number of frail older people attending A and E will continue to increase and that that situation will worsen as a result of continued cuts to social care budgets. We had a warning about that from Sandie Keene, director of the Association of Directors of Adult Social Services. She said

“it is absolutely clear that all the ingenuity and skill that we have brought to cushioning vulnerable people as far as possible from the effects of the economic circumstances cannot be stretched any further, and that some of the people we have responsibilities for may be affected by serious reductions in service—with more in the pipeline over the next two years.”

Unfortunately, excellent though our local hospital is, we are facing a situation where 1,000 people will lose their care packages this year, and I am very concerned about that.

[Jim Shannon]

The Francis report makes some recommendations on mental health, which is in the social care category. One of those suggestions was the training of family members to look after those with mental health conditions better at home, so as to improve their quality of life and help rehabilitate them. I do not see much of that in the report. Would the hon. Lady like there to be more emphasis on family members who are under pressure and are helping others with mental health conditions at home?

[Barbara Keeley]

Indeed, and our most recent inquiries in the Health Committee are about mental health issues. There is a series of issues that need to be looked at. It is rare in a health debate for me not to mention carers. We need to be realistic about the fact that we are now putting a huge amount of pressure on those carers. Removing social care packages will affect our local hospital, but it will also affect those family members, because in the end who is the person who cares? It is the family member to whom the role falls.

To conclude the point about staffing issues in A and E, we found in our earlier inquiry that fewer than one in five emergency departments were able to provide consultant cover for 16 hours a day during the working week, and the figure is lower at weekends. The whole issue of mortality rates is very much linked to that, and we cannot ignore it. We must keep focusing on the problem with recruitment and the lack of consultant cover.

My right hon. Friend the shadow Health Secretary referred to the warnings by the president of the College of Emergency Medicine. During the time when the college was warning about these issues, Ministers were tied up in knots by the challenges of reorganisation. That is key. Ministers have insisted that they are acting now, but it is clear that those warnings from the CEM in 2010 did not get enough attention until recently. The staffing situation can hardly improve when so few higher trainee posts in emergency medicine are being filled. In the latest recruitment round, 156 out of 193 higher trainee emergency medicine posts went unfilled.

My final point is about the difficulties caused by the cost of the NHS reorganisation reforms. In the past few months the spotlight has fallen on unnecessary spending and waste. We all should be concerned about that. We know that emergency departments are spending £120 million a year on locums, and this could be getting worse. The Health Committee has also recently focused on redundancy costs, which have absorbed £1.4 billion of NHS funding since 2010, with £435 million attributed just to restructuring costs. The scandal of the scale of redundancy payments to NHS staff was made worse when we found out that such a revolving door was in operation. The Health Committee was told that of 19,100 people made redundant by the NHS, 3,200 were subsequently rehired by the NHS, including 2,500 rehired within a year and more than 400 rehired within 28 days. There were reports of payments of £605,000 made to an NHS executive whose husband also received a £345,000 pay-off, with both reported to have been subsequently rehired elsewhere in the NHS. That is a scandal. I know that the Minister said it would not happen again, but that is £1 million that could have been spent on patient care.

Adult Autism Strategy

Jim Shannon Excerpts

Wednesday 5th March 2014 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I am pleased to make a contribution to the debate, and I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on bringing this matter to the House for consideration. Autism is an issue that I have helped constituents with on many occasions, as an elected representative. I am mostly aware of it, probably, in respect of how we can help those with autism through the benefits system. That is perhaps people’s first introduction to the issue. The right hon. Lady clearly laid out the issues pertinent to those with autism, and also mentioned the pressure that families are under. I want to dwell on that.

Diagnosis of autism has been increasing. I have been involved in the support of autism services for many years in Northern Ireland, through my constituency work and, formerly, in my role as a Member of the Northern Ireland Assembly and as a local councillor. I am sure that all hon. and right hon. Members in this Chamber can think of examples of when they have fought to have a child statemented, so that they could receive the help that they and their family needed for schooling, and so that support could be given to the family. Although this debate is about adult autism, autism affects people from the very beginning. I shall try to speak about that as well.

I recently spoke to a young mother of three who, with her husband, was beginning to attend parenting classes to help them better deal with their daughter. It was not that they were not willing to deal with her, but they needed help dealing with the behaviour issues of those with autism. We are talking about lovely children—and lovely adults—but they need help. The couple have two other lovely children, a great family support network and a close group of friends who help out, yet they recognised at an early stage that they needed more help and needed to be better equipped to deal with this. They said that they needed help understanding autism, so that they could understand and interact better with their child.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does my hon. Friend agree that even in 2014, after a number of years in which awareness of autism has increased significantly—it has done so particularly in the past 15 or 20 years—there is still a need for many statutory agencies to act and react much more sympathetically and proactively, particularly in dealing with parents who have autism and have difficulties with parenting skills?

[Jim Shannon]

I thank my hon. Friend and colleague for clearly setting out the issue for the bodies responsible for helping parents. The parents I mentioned came to me about parenting skills, and they got the help, by the way, which was good. They told me what a blessing these classes were. That is why I am happy to stand with my colleagues today and highlight the needs of sufferers of autism and their families.

I am familiar with the care of one autistic young man. Many hon. and right hon. Members here have personal knowledge of such situations, and I hope that some of them will have a chance to contribute to this debate. That young man’s parents do everything for him: they dress him, cook for and feed him, clean, bathe and toilet him, amuse him, and hug, kiss and love him. He depends on his parents entirely for his every need. When he is at his day classes, they do the washing, ironing, cleaning, and shopping and try to find time to work to pay the bills at the same time.

The pressure on the parents and on the family unit is greater because of the problems and behavioural issues related to the autism of their child. They love their son—that is never in dispute—but love is not enough to get the family through the sheer exhaustion and the emotional and mental strain. Sometimes help is needed on matters outside of parental skills—through social services, for example, giving a bit of respite. Difficulties in the benefits system are practical issues for parents and those with adult autism; they relate to how parents can help their child through the school years and into the early years of adult life. It is up to the community and us as elected representatives to step up to the plate and help that boy and his parents. We can do that by supporting them and offering them the best that our society can do to ensure that they do not reach the point of no return.

We can all relate to the story of Susan Boyle, who has Asperger’s syndrome, which is also autism. She found out that she had it later in life. After she was diagnosed, she said that she almost felt relieved to know, after all those years, what was wrong and why she was different. That is a practical example of how someone the nation knows has been affected. She said what she said because she felt it was important that other people knew that autism cannot and will not hold people back, but they need help to get along. That is the thrust of this debate.

[Kate Green]

Does the hon. Gentleman agree that we need to raise awareness across society of the circumstances of adults with autism? For example, a young man in my constituency, looked after by his parents in the way that the hon. Gentleman describes, got severely into debt because he did not understand what financial services companies were saying when they were pushing credit cards and loans on him. Does he agree that educating the business community, neighbours and community groups, and everyone in society, about how adults with autism respond and cope would protect people and prevent those things from happening?

[Jim Shannon]

I thank the hon. Lady for her valuable contribution. Yes, I agree; I think all hon. and right hon. Members would. Churches have intervened to help in a number of complex cases in my constituency. What is not complex for us is complex for people with autism. There is a clear role to be played in that regard. Only 15% of adults with autism are in full-time employment; again, that results from some of the issues that they suffer from, including epilepsy, sleep disturbance and mental health problems. Many out there are trying to help and assist.

I ought to give a Northern Ireland perspective, because we have done good, helpful work there, health being a devolved matter. The Minister is aware of that good work because he has visited a number of times. Perhaps he might comment on that in his response.

The Northern Ireland Assembly put in place the Autism Act (Northern Ireland) 2011, which is the most comprehensive autism and single disability legislation in the whole of Europe. The need to do something was recognised at an early stage, as was the fact that the power was there to do it within the devolved Administration, and that was done. It is the first legislation in Northern Ireland requiring by law all Departments to plan and work together on the delivery of the strategy. The cross-governmental attitude that the right hon. Member for Chesham and Amersham requested is there. My hon. Friend the Member for East Londonderry (Mr Campbell) and the hon. Member for Stretford and Urmston (Kate Green), who both intervened on me, have confirmed that that should happen. Departments worked together on the delivery of a strategy. No cross-Department barriers are allowed at all. When we say “comprehensive”, we mean it. I am delighted that the debate is calling for such a strategy.

Autism Northern Ireland was at the centre of the campaign for the Autism Act (Northern Ireland) with its grass-roots campaign. There was no money or external lobby company—just hard work, and determination to make it happen and to gain support from all parties, which was forthcoming. It had autism ambassadors—health and education party spokespersons—to build up expertise on issues of concern. It also formed a partnership with Autism Cymru, which was already working with the Welsh Government on implementing a Wales autism strategy. That was the foundation of the Celtic Nations Autism Partnership—Celtic as in “keltic”, and certainly not “seltic”. No offence to any Celtic supporters who might be here, of course. That is a partnership with the autism societies of Scotland and the Republic of Ireland, which has led to initiatives in the USA. The CNAP and Members of the Legislative Assembly visited the US Congress and the European Parliament.

When we say that the approach is comprehensive, we are talking about looking across Europe and the world; examples were considered and discussions took place. That led to the Autism Act (Northern Ireland). A partnership was initiated with Autism-Europe and MEPs to develop a comprehensive and well-thought-out European autism strategy.

In 2012, I highlighted the difference between the Autism Act (Northern Ireland) and the English Autism Act 2009: the Northern Ireland Act is equality-driven and lifelong-focused. Perhaps the Minister will indicate whether the Government are trying to achieve in England the equality and lifelong focus that we have in Northern Ireland through the Autism Act (Northern Ireland) 2011. That Act amends our disability discrimination legislation, too, to include those with social communication disabilities such as autism. That supersedes the Great Britain Equality Acts, which only give recognition and guidance in primary legislation. That is significantly different from how we did it back home, where we have attempted to address adult autism.

I again thank the right hon. Member for Chesham and Amersham for securing the debate. She, like me and everyone else in the Chamber, sees the gaps in the strategy and the need to enhance provision by including an adult strategy. I have raised today the cases of a young girl and a young adult male. The strain on families grows greater with time as the child becomes an adult and more difficult to handle. The legislation should be amended to provide more state help.

[Andrew Selous (South West Bedfordshire) (Con)]

I apologise for not being here earlier, but I was unable to get out of a meeting. One of my constituents contacted me to say that now that her daughter is 20, none of the professionals dealing with her daughter will speak to the mother. Does the hon. Gentleman think that we should make changes, so that with the young person’s permission, if they are over 18 and want their parents involved, all the different organisations work with the parents, who are there for their autistic children as they get older?

[Jim Shannon]

I agree entirely with that most helpful intervention. In my experience as an elected representative, that is exactly what people want. We should help whenever we can. The Minister for Health, Social Services and Public Safety in Northern Ireland has been anxious to collaborate with the Department of Health on what is working well in Northern Ireland. I have great respect for the Minister of State, Department of Health, but perhaps things could work better. There are examples of good work on the mainland. I looked through the background notes this morning before the debate, and one thing that caught my eye is that there is a specialist autism unit at South Devon college called the LODGE—Learning Opportunity for Development and Guided Education—which has been shortlisted at a national award ceremony in recognition of the education it provides to young adults with autism. There are many good examples of how Departments can do better for young adults with autism, and we should be trying to make that happen.

I am keen to assist and work with the right hon. Member for Chesham and Amersham to ensure that adequate legislation is introduced to make changes that will greatly affect the lives of those with autism and their carers. Never forget the carers, who also need support. They love their children, but they need help, because things are not simple. They want their child to have the best future possible, which does not include an institution. How will we deal with ageing parents? I know that I am not the only one who is aware of ageing parents. What will happen to these children and young adults when their parents pass away? They may no longer be able to look after their children and young adults alone. The answer is clear: they need support, and we must put it in place. Hopefully today is a first step towards providing that support to families across the United Kingdom of Great Britain and Northern Ireland. I support the right hon. Lady and her proposal.

Pancreatic Cancer

Jim Shannon Excerpts

Tuesday 4th March 2014 Commons Chamber

[Eric Ollerenshaw (Lancaster and Fleetwood) (Con)]

Thank you, Mr Deputy Speaker. As one Lancastrian to another, let me say that I am pleased to introduce this debate on access to new treatments for pancreatic cancer. It will become apparent why we are so pleased to get this debate at this time.

I want to start by reiterating some points I made about this dreadful disease in a debate in Westminster Hall last May that might help to set the context for this further debate today. Before I do, may I put on record my thanks to Pancreatic Cancer UK, Pancreatic Action, the all-party group on pancreatic cancer and others who have highlighted the impact of this disease? These include that great Lancastrian actress Julie Hesmondhalgh, who recently gave the disease some publicity in “Coronation Street”. More sadly there is the example of Kerry Harvey, who died at the age of 24 on 22 February and did so much in her last months to highlight the impact of this disease with the assistance of Pancreatic Action.

Pancreatic cancer is the fifth most common cause of cancer death in the UK. Approximately 8,500 people will be newly diagnosed with pancreatic cancer this year with around 7,900 people dying from the disease annually. Pancreatic cancer has the lowest survival rate of the 21 most common cancers. Five-year survival rates are less than 4%; a figure that has barely changed in nearly 40 years. Pancreatic cancer five-year survival rates lag behind many other EU countries and are almost half of what they are in the US, Canada and Australia. Only 1% of the National Cancer Research Institute Partners' total research spend is directed towards pancreatic cancer. By way of comparison, £3,613 per death per year is spent on breast cancer research compared to £553 per death per year on pancreatic cancer.

Some 50% of pancreatic cancer patients are diagnosed as a result of emergency admission—nearly twice that of all other cancers combined. Patients diagnosed as a result of emergency admission, compared to other routes to diagnosis such as routine GP referral, have significantly lower rates of survival. Pancreatic cancer patients have one of the least satisfactory NHS experiences of all cancer patients, evidenced by National Cancer Patient experience surveys.

If it is not too presumptuous, I would like to quote myself from the debate on 23 May 2012:

“Effective cures for pancreatic cancer remain stubbornly elusive, but we need to try to find ways to prolong patients' lives and to ease their pain and sufferings while always remembering that, with cancer, it is not only the patient who is affected but the people around them, including their family.”—[Official Report, 23 May 2012; Vol. 545, c. 93WH.]

The all-party group then found out that a new drug, Abraxane, in combination with standard chemotherapy was licensed for use in patients in the UK and Ireland with metastatic pancreatic cancer. Abraxane has been described as the biggest advance in pancreatic cancer treatment in almost two decades—for a disease, as I have already said, where survival rates have barely changed in 40 years.

As the drug has not yet been approved by the National Institute for Health and Clinical Excellence, it is not yet available on the NHS as a standard treatment. Pancreatic Cancer UK is very keen to ensure that patients are able to access Abraxane through the cancer drugs fund. The House will now see the importance of the debate tonight: the decision will be taken on Thursday 6 March—that is this week. Along with others in the Chamber, I would like to see the drug approved by the CDF this week and then eventually by NICE so that access to it is more readily available. We know that Abraxane is due to be reviewed by NICE very soon but this process takes a great deal of time, and it is time that pancreatic cancer patients do not always have.

One of my fears is based on my understanding of the way these new drugs are measured. This is based partly on what is called quality-adjusted life years which, so far as I understand it, is a measurement of the state of health and how long life is prolonged running from optimum health to death.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for giving way and for bringing this important matter to the House’s attention. It is surprising how many of us know people, both personally and from our constituencies, who have been affected by pancreatic cancer. I have some figures from Northern Ireland that might help his argument. Only 14.2% of males and 10.3% of females live longer than a year after diagnosis. When we get to five years, those figures drop to 2.8% and 2.9% respectively. Early diagnosis is key, along with new treatments. That would increase the survival rate by 30%. Does he agree that a strategy covering all the regions of the United Kingdom of Great Britain and Northern Ireland would be better for addressing the issue?

[Eric Ollerenshaw]

The hon. Gentleman hits the nail on the head. It is of course a UK issue, and one of the concerns is the regional variation in performance on early diagnosis and the impact that is having. We want to get rid of that.

I want to talk today about the new drug Abraxane. The vast majority of pancreatic cancer patients are diagnosed so late that the benefit of any new drug can be measured only in months, rather than years. Our worry is that, compared with other cancers, that benefit might be deemed insufficient simply because it is measured in months and might not register highly on the quality-adjusted life years measurement scale.

That is why Pancreatic Cancer UK launched its Two More Months campaign, which highlights what patients would have been able to do with two more months, which is the average additional survival time provided by Abraxane. I have a few quotes from relatives of those who have died from pancreatic cancer:

“Two more months would have been a significant amount of time for Nicola, only 25 years old herself, to spend with her four year old daughter”.

That was from Chris, Nicola’s brother.

“Two more months would have meant my daughter Gemma might have got to wear her wedding dress and walk down the aisle with Adam”.

That was from Debbie, Gemma’s mum.

“Two more months would have seen my wife Jill finish her Open University Modern Languages degree and attend an international social work conference in Buenos Aires, both of which she would have been very proud of”.

That was from Dave, Jill’s husband.

“Two more months would have seen Andy and I celebrate our second wedding anniversary, and given us more time to prepare for what was to come”.

That was from Lynne.

For me, two more months would have meant one last Christmas with my partner—

--- Later in debate ---

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

I congratulate my hon. Friend the Member for Lancaster and Fleetwood (Eric Ollerenshaw) on securing this debate and leading it in the knowledgeable and able way that he has led other debates on this important subject. I will do my best to respond to his specific points, but there may be some that I will need to respond to after the debate.

It goes without saying that cancer is a terrible disease, and my hon. Friend spoke movingly of his experience, but all hon. Members know ways in which it has touched them and their families and friends. I pay tribute to the work that he and colleagues in the all-party parliamentary group on pancreatic cancer have done to raise awareness of the disease. Its excellent report, “Time to Change the Story”, does much to counter common misconceptions about the disease.

My hon. Friend drew the House’s attention again to the particularly poor outcome for people who get the disease and the challenges in diagnosis. If we could match the best survival rates in Europe we could save an additional 75 lives a year. Clearly, if we exceeded those survival rates, more people would be saved.

Before I tackle my hon. Friend’s specific point about Abraxane, it is worth giving the context of other work that the Government are doing to support earlier diagnosis. We committed more than £450 million in funding over the four years to 2014-15. Sadly, there is currently no easy way of detecting pancreatic cancer and it can be particularly difficult for GPs to detect and diagnose it, especially in its early stages. However, to try to address the situation, the Department helped to fund a six-month pilot with Macmillan Cancer Support of a cancer decision support tool for GPs to help them to identify patients whom they might not otherwise refer urgently for this suspected cancer. Evaluation of the pilot is under way, and if it is found to be helpful, we will work with NHS England actively to promote its use. That tool was highlighted at a recent parliamentary event that some hon. Members might have attended.

We need to do more about earlier diagnosis and public awareness of the symptoms, which are often limited. As is often the way, I suspect that the recent “Coronation Street” story line has done more than many public health campaigns could have done to raise awareness. Yet again, well done to our broadcasters for covering some difficult issues and providing through Hayley’s sad story some important health education. It has reached many people, and we thank them for that.

On Abraxane, I am obviously aware of Pancreatic Cancer UK’s Two More Months campaign, and I congratulate my hon. Friend on this particularly well-timed debate. I am fully sympathetic to his points. As he says, two more months can mean so much to those who are affected by this cancer, and he gave some moving examples. We do not associate the disease with younger people. Sufferers are predominantly older but, as he illustrated, many people suffer at a younger age. I thank those who contributed to the report details of loved ones they have lost. My hon. Friend bears witness to his own loss, which we feel keenly with him.

I listened to my hon. Friend’s request that the recently licensed drug Abraxane should be made available from the cancer drugs fund. As he says, in the light of new evidence from the manufacturer, NHS England’s cancer drugs fund expert clinical panel is reviewing its earlier decision not to add it to its national list. One criterion in the scoring tool used by the panel is evidence of a drug’s impact on quality of life, which is what my hon. Friend spoke about. While I cannot in any way pre-empt the panel’s decision, I can fully understand how important this will be to people with pancreatic cancer. I will ensure that NHS England is made aware of tonight’s debate and the very good attendance. As the hon. Member for Scunthorpe (Nic Dakin) said, that reflects the impatience of parliamentarians, on behalf of their constituents, to see progress on this issue, which we seem to have been stuck on for so long. I undertake to do that immediately in the morning to ensure that the information is with the panel ahead of its deliberations.

My hon. Friend will be aware that Abraxane has not yet been assessed by the National Institute for Health and Clinical Excellence. Partly because of these situations, we established the cancer drugs fund to ensure that cancer patients in England have better access to life-extending or life-improving drugs that are not routinely funded by the NHS. He may also be aware that Novartis’s drug Afinitor is included on the national list for the cancer drugs fund, alongside two other treatments for treating pancreatic and neuro-endocrine carcinomas. More than 44,000 patients have benefited from the cancer drugs fund since October 2010, and we have recently announced an extension to funding for the scheme.

Looking further ahead, NICE is appraising Abraxane for untreated metastatic pancreatic cancer and expects to publish its guidance to the NHS in January 2015. That may seem a long way away, but, as been mentioned, this reflects the robust, evidence-based technology appraisal programme that NICE provides to ensure that clinical effectiveness and cost-effectiveness is taken into account when we look at drugs and treatments. The Government believe that clinically appropriate drugs should be routinely available to NHS patients, and we remain committed to the rapid uptake of NICE-recommended drugs in the NHS.

My hon. Friend referred to recent decisions on cancer drugs made by NICE. I am sure he appreciates that there will naturally be fluctuations in the proportions of drugs recommended by NICE each year, so a more accurate picture can be gained from looking at all NICE decisions on cancer drugs to date. That shows that almost two thirds of its decisions on cancer drugs have recommended their use for all or some of the eligible patient population. Far from making appraisals tougher, the most significant change to NICE technology appraisal methods in recent years has been to introduce greater flexibility in the appraisal of potentially life-extending treatments for patients at the end of their lives, and that has helped NICE to recommend a number of new cancer drugs for use on the NHS. That speaks directly to the extremely pertinent points that my hon. Friend made about how someone who has had such a diagnosis will see an extra two months in the context of the end of life, given that the progress of the disease can be very rapid from the point of certain diagnosis.

[Jim Shannon]

Will the Minister give way?

[Jane Ellison]

Yes, very briefly.

[Jim Shannon]

In an earlier intervention I asked about a UK-wide strategy. Has the Minister considered that for all the regions?

Patient Medical Records

Jim Shannon Excerpts

Tuesday 4th March 2014 Westminster Hall

[Mr Godsiff]

My hon. Friend makes a very good point. I hope that the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) has taken note of what she said and that the Department will be forthcoming in identifying exactly how much confidential NHS data have been released to private profit-making companies. He might also point out how much income the Government have received from that.

There are a huge number of problems with the existing scheme. I could mention the information leaflets that look more like junk mail and have no opt-out return slip on them, or the fact that data extraction was planned to start before the code of practice on who will be allowed to access the data was completed, or the lack of a clear figure on cost. However, perhaps the most damaging flaw in the whole plan has been the refusal to listen to or to address those concerns when they were raised by doctors and patients. We simply cannot and should not bring in a scheme that lacks the consent and approval of the vast majority of people whose confidential health data will be used.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing the matter to the Chamber for consideration; it is the second time in three weeks that we have had the chance to debate the issue. Data collection is important, because of the benefits that could come from it, but confidentiality and people’s confidence in the system have been undermined. Does he agree that the fact that the NHS data collection is specific to England, and that the Northern Ireland Assembly Minister responsible has indicated that he would have some concerns over a similar proposal, indicates that there is not unanimous support for it across the whole United Kingdom of Great Britain and Northern Ireland?

[Mr Godsiff]

As usual, the hon. Gentleman makes an excellent point, which just goes to show that the Northern Ireland Assembly view the matter with more concern than the Department of Health seems to at the moment.

I say again that simply spending the next six months dropping more leaflets through letterboxes or building a website will not be anywhere near good enough. The Government must now come up with a coherent plan of how they will change care.data to address the many concerns that have been raised, and NHS England must work out how it will let people know about that.

Basically, the Government have two choices, but first they should stop fighting with GPs and patients who are unhappy with the scheme. I can assure the Minister that the GPs and patients who have contacted me have plenty of ideas about how the scheme could operate with proper safeguards built in. Will the Minister commit, during the six-month period, to engaging with GPs and patient groups about their concerns? As I have said, the Government have two options. They can either ensure that all the patient data extracted are only shared with non profit-making bodies working in the NHS or with recognised medical charities, or, and this is the second option, allow identifiable data to be extracted and used by companies for profit, but only, surely, when patients have specifically opted in to permit that.

The one thing any new scheme must have is clarity. Which datasets and variables will be released? Who decides what information or combination counts as identifiable information? Who will be held accountable if data are wrongly released and confidentiality breaches occur? What will happen if a patient withdraws their consent after data have been extracted, because they change their mind?

The Government must engage with GPs and patients. They could do far worse than look at the survey carried out by Pulse, which showed that three quarters of GPs believe that NHS England should abandon the opt-out system and ensure that data are extracted only after patients have given consent.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 25th February 2014 Commons Chamber

[Jane Ellison]

I am aware that there has been interest in this matter in my hon. Friend’s clinical commissioning group. The provision of alternative and complementary therapies is decided by CCGs, which have to take into account National Institute for Health and Clinical Excellence guidance and local health needs and priorities. The responsibility is with CCGs to achieve value for money and to make sure that they are delivering improvements in the quality of care and patient outcomes, and it is against those standards that we would expect them to measure those therapies.

[Jim Shannon (Strangford) (DUP)]

In the past 12 months there has been great advancement in new medications and alternative medicines, with new drugs for multiple sclerosis, for type 2 diabetes and for hepatitis C, and advancements in heart operations, rare diseases, and so on. Will the Minister indicate the time scale for the announcement of new medications and their availability on the NHS?

[Jane Ellison]

The hon. Gentleman, who follows these matters closely, is aware that medicines go through a process by which they are approved and recommended. Once they are in that position, it is, as I say, down to CCGs to make decisions about which treatments are appropriate for their patients and to measure them against the standards that I laid out.

Medical Records (Confidentiality)

Jim Shannon Excerpts

Tuesday 11th February 2014 Westminster Hall

[Mr Mudie]

I read with interest about the right hon. Gentleman’s unfortunate nose. He makes an important point.

My point is that there will eventually be a breach of security. It is inevitable, given the size of the database and the information stored in it. The human cost to the patient whose identity and medical history are made public is potentially disastrous. Careers could be ended, jobs lost, insurance refused and relationships destroyed if sensitive medical facts are made public or used by private firms, other people or, indeed, the media.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this matter to the House for consideration. He said rightly that there is a medical need to have some of the information, but many patients fear that their confidentiality could be taken over by money-making ventures from those involved in the process. Instead of an opt-out system, should there not be an opt-in system, whereby the GP and the patient get together and discuss confidentiality and an understanding of the system before anything happens?

[Mr Mudie]

The hon. Gentleman makes an important point, which I will cover when discussing the second issue that I identified. At the moment, I am dealing with security, but I will come on to the opt-out arrangements, which are far from satisfactory.

A further reason for concern is that the information will not be available for analysis and research in the national health service alone, but will be made available to non-NHS organisations. A Library note describes an interesting situation in which, without the consent of individuals, the information given can identify patients:

“In most cases, researchers can carry out their studies using information that does not identify you. Occasionally, however, medical researchers need to use information that does identify you. Only researchers who have obtained your permission or who have been granted special approval are allowed to access your identifiable data… The CAG approves requests where it is not possible to use information that does not identify you and it is not possible to ask you. There are a variety of reasons why it might not be possible to ask people; for example, where there are extremely large numbers of patients”—

so it is okay if researchers pinch a lot of patient information and identify the patients, but such patients would have no come-back, because that is reasonable in the eyes of the national health service.

Another interesting but concerning document includes a diagram helpfully provided by the Information Commissioner that describes three different levels of anonymity. First, in the public domain, there is no information—none. It is totally anonymous. Secondly, for approved organisations, whether NHS or outside organisations given permission, there is potentially identifiable data. Finally, organisations that have a legal basis, such as the police, have all the data—nothing is hidden. Interestingly enough, the police will not have to do what they have to do now, which is to get a court order to get the information; they will have an automatic right to it.

NHS England has explained that information given to private researchers will be anonymised before release, but that is undermined by its statement that the standard of anonymity it is using requires it to

“ensure that, as far as it is reasonably practicable to do so, information published does not identify individuals.”

That is hardly reassuring.

All those instances could be dismissed as speculation, but we should be aware that NHS England and the Government see the whole exercise as an opportunity for the UK to become a major player in medical research, with both the NHS and the private sector seeing strong economic growth and income from the use of the data. I forgot to mention that in the database will be included people’s national health service number, postcode, date of birth, gender and ethnicity. With all that information—particularly the postcode—it will be fairly easy to identify someone.

I turn now to the question of permission. This genuinely makes me very cross. The handover from GPs will take place in March—one month’s time—and after three months, depending on opt-out numbers, 100% of records will be on the national database. That should have happened already, but the Information Commissioner stopped the process late last year because the NHS had not consulted or, in the commissioner’s view, given enough information to the public. The commissioner ordered the NHS to postpone the process and take steps to give more information on both what was happening and the right to opt out. It has been given £2 million to do so, but it is far from clear that it is doing it willingly—it is doing it in bad grace.

I should mention the summary care record, another IT exercise that was carried out five or six years ago, more limited in its function but with the same organisational structure. A key element was that, unless a patient objected, their records would automatically go on the database. That tactic of forcing people to opt out rather than in was successful and with summary care records only 1% of patients in the pilot schemes opted out. There was a discussion about what system should be used for opting out for the new, greater system, a report was written, and surprise—officials chose the opt-out. With no real publicity, involvement or consultation, they have reckoned from the pilots that that might be the result nationwide. I thoroughly object to that.

NHS England published a leaflet, which might have come through Members’ doors, that supposedly meets the Information Commissioner’s request, but it is so bland, patronising and uninformative that it seems to have been written, miraculously, by a dead author—Enid Blyton. It is an insult to the general public. Opting out is not actually spelled out within the leaflet. NHS England is demanding that people go to their doctor’s surgery, discuss the matter with a doctor or practice manager and then give their decision on opting out. The House knows how busy doctors are and how busy their surgeries are. Is somebody going to take a day off work to go and see their doctor not because they are ill but because they want to discuss opting out? It is not sensible.

I suggest that NHS England is not serious about involving and empowering the general public. That is the second reason why real questions should be asked about this plan. The leaflet does not make the point that there are two opt-out options, one for giving the information out within the health service and one for giving it out outside the health service, or that people can obtain a form, fill that in and send it in to a practice.

I am taking up time and I know that a colleague wants to speak. I want the Minister to take his lead from the Information Commissioner and postpone the introduction of the scheme to allow further consultation and discussion about whether there should be an opt-in or an opt-out, about what information is being shared and about the security of that information. If the medical records of members of the public are going to be given out, they should have knowledge of that and should have had the opportunity to opt out.