Cancer Drugs

Pauline Latham Excerpts

Tuesday 19th January 2016 Westminster Hall

[Pauline Latham (Mid Derbyshire) (Con)]

I beg to move,

That this House has considered the removal of drugs from the Cancer Drugs Fund list.

It is a pleasure to serve under your chairmanship, Mr Streeter. I secured this debate to raise the case of a constituent and to allow other Members to discuss the effects that removing drugs from the Cancer Drugs Fund will have and, I suspect, the current consultation on the fund. The latest delisting of some drugs from the fund has happened since the last debate on cancer drugs, and I am sure that many Members have heard from constituents who have been affected.

In November, I was contacted by a constituent, Tina Spencer-Keyse, about her husband Graham, who in 2010, at 51, was diagnosed with myeloma, which is a rarer cancer caused by abnormal cells in the bone marrow, where all blood cells are made. Myeloma is a relapsing and remitting cancer, meaning that there are periods when the myeloma causes symptoms and complications and needs to be treated, followed by periods of remission or plateau, when the myeloma does not cause symptoms and does not require treatment. Because myeloma is relapsing and remitting, it is crucial that clinicians are always one step ahead of the disease and that there is a treatment option for the patient to receive when it returns, especially when other treatment options have already been used.

Until August 2015, Tina and Graham had hoped to use one further drug treatment available for myeloma. Pomalidomide, also known as Imnovid, is used to treat relapsed multiple myeloma patients who have received prior treatment regimens but for whom the disease has continued to grow and spread. Imagine how devastated the Spencer-Keyse family were to find out then that the drug had been removed from the list of drugs available through the fund. Following the delisting, there are no other licensed treatments available for myeloma patients in England. Patients have no other options once the drug they are currently taking fails. They have nowhere else to go. Imagine the frustration, and probably anger, that they and thousands of others feel when a drug that was available just months before is no longer available to them but is still being used by other patients who were prescribed it before the delisting. The situation is such that a doctor might see one patient in the morning and be able to continue prescribing a treatment yet see another patient with the same disease afterwards and not be able to do so, even when they know it could help.

[Nick Thomas-Symonds (Torfaen) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Streeter. I congratulate the hon. Lady on securing this important debate. Another example of a drug that has been delisted, causing similar frustration, is Abraxane, which is used in the treatment of advanced pancreatic cancer and was removed from the Cancer Drugs Fund in November. First, does she share my concern that although the delisting applies only to England, it causes worries across the rest of the UK as to whether the drug will become unavailable there, too? Secondly, although of course a consistent set of rules must be applied, one of the issues with pancreatic cancer is that 80% of patients are diagnosed when the cancer has already spread. Although Abraxane may only give a few weeks more life, those weeks may double life expectancy.

[Mr Gary Streeter (in the Chair)]

Order. Interventions must be brief.

[Pauline Latham]

I accept what the hon. Member for Torfaen (Nick Thomas-Symonds) says. I have also campaigned for Abraxane to continue because, very sadly, a former Member of this House died from pancreatic cancer in the last Parliament. He had very few weeks to live once he was diagnosed, so it is a particularly unpleasant disease.

[Sir Oliver Heald (North East Hertfordshire) (Con)]

On Abraxane, does my hon. Friend agree that if a cancer is fast-acting and the gap between diagnosis and death can be as little as six months, getting an extra month or two means that a person can settle their affairs and get peace of mind? That is very important time.

[Pauline Latham]

It is incredibly important time. Any extra few weeks in such a situation is so valuable to those patients.

In answer to a written question submitted by my hon. Friend the Member for Crawley (Henry Smith) on 10 December 2015, the Minister said:

“NHS England has advised that a draft treatment pathway for patients with multiple myeloma, which takes into account the…impact of treatments removed from the Cancer Drugs Fund (CDF), is currently being finalised.”

I hope he is able to update us today on when those proposals might be published. My constituent and his family would like to know what options, if any, he has.

It is not only drugs for rarer cancers that have been hit. Drugs to treat breast cancer, bowel cancer, prostate cancer, leukaemia and other blood cancers, some gynaecological cancers and cancers that affect the central nervous system have all been removed, which probably amounts to thousands of patients who are now unable to receive treatment. That is absolutely devastating for patients and their families, as the chance to prolong life for a few more months or years has been diminished.

[Julian Knight (Solihull) (Con)]

I congratulate my hon. Friend on securing this important debate and on the passion she is showing in putting her case. What does she think about NHS England’s proposal that the Cancer Drugs Fund should become a managed access fund that pays for promising new drugs for a set period before the National Institute for Health and Care Excellence decides whether the drugs should be routinely available on the NHS? Does she think that is a good idea or not a good idea?

[Pauline Latham]

I will come on to that later. If my hon. Friend does not mind waiting a few moments, he will hear what I have to say.

Delisted drugs are still potentially available on an individual basis via an individual funding request. Is the Minister able to say how many of those requests have been successful as a proportion of all requests, and for which drugs? I know he is working extremely hard on this matter, about which he cares passionately, and I thank him for that.

Although there has been recent progress, the UK still lags behind most other developed nations on use of and access to cancer drugs. In fact, we do not do as well on outcomes for cancer as many other nations. Nationally, cancer is still the largest killer, accounting for 29% of all registered deaths in 2014, the last year for which Office for National Statistics figures are available. Tracking the history of the Cancer Drugs Fund, a fund for which I have repeatedly supported investment, we can see that it has been on a rocky road to get to where we are now. Drugs have been removed, and the general consensus is that the fund has become unsustainable.

For the first three years, the fund underspent its budget—the opposite problem from the one we have now. In fact, between October 2010 and March 2013, the 10 strategic health authorities that administered the fund underspent by £128 million, or 28% of the fund’s total budget. That is a lot of money that could have been spent treating cancer patients. There was significant geographic disparity in the use of the fund. In the east midlands, which covers my Mid Derbyshire constituency, the number of patients supported by the fund per 1,000 new cancer cases in 2012-13 was just 27. That was the lowest figure in the country and represented a failure of the East Midlands strategic health authority, which was then in control of administering the fund, to promote its use to clinicians and patients. Several of my constituents died prematurely because they were refused funds for the drugs they needed when the fund was always underspent, despite pleading from me on behalf of people who were spending their own money on those drugs.

Since NHS England and Public Health England took control of the fund, the change has been dramatic. Having one central authority administering the fund removes the geographic differences whereby treatment authorities were promoting the fund and treatments at different levels. The effect is such that patient numbers skyrocketed. As last year’s high quality National Audit Office report on the Cancer Drugs Fund notes, the number of patients approved for funding increased by about 30% each year from 2011 to 2015, which should be viewed as a success for patients. Thanks to the fund, 84,000 patients have been able to access treatments that they would otherwise have been denied. The success is such that, in 2014-15, almost one in five patients started a new cancer drug through the Cancer Drugs Fund. What was meant to be a temporary measure is now a mainstay of cancer treatment in England.

Obviously, such growth comes with a price; the cost of funding the scheme spiralled out of control. Following the Government’s decision to extend the fund to March 2016, NHS England increased the annual budget from £200 million to £280 million for 2014-15 and 2015-16. In January 2015, it increased the budget for 2015-16 again, to £340 million, meaning that the fund now has an expected lifetime budget of £1.27 billion.

Was taking drugs off the list a solution to the fund’s problems? It was certainly the easiest way to regain control of costs, but it hit patients hardest rather than solving the problems with NICE’s approval processes, which was the underlying reason for the fund’s creation. The rapid response to regain control of the budget also means that no new treatments were added to the Cancer Drugs Fund from January 2015. The decision to keep drugs on the fund’s list or remove them was based on their clinical effectiveness and cost, but from the start the fund did not keep records of treatment outcomes. Surely it is hard to obtain a full understanding of drugs’ full efficacy if a full analysis is not available by which to judge them. The failure to collect data on patient outcomes until July 2015 is truly disgraceful and undermines any proper evaluation of the fund’s success.

I am particularly attracted to the question asked by the right hon. Member for Don Valley (Caroline Flint) during a Public Accounts Committee oral evidence session on the Cancer Drugs Fund last year. She asked why the Department of Health did not

“knock the heads of the SHAs together to ensure that there was some sort of common collection of data”,

instead of just recommending it. Fortunately, NHS England and Public Health England have resolved the problem—today, every new Cancer Drugs Fund patient is automatically identified on the systemic anti-cancer therapy database—but five years to fix a problem is far too long, and a failing of the fund.

Although data outcomes are now mandated, the rate of return has been far from perfect. In 2014-15, many records lacked important data. Most shockingly, 93% of patient records submitted did not have an outcome summary. Will the Minister inform us whether there will be penalties for trusts that consistently fail to produce the required data on cancer treatments?

The lack of data collection also undermines efforts to establish whether the price paid for drugs is equal to their outcomes. As the chief executive of the NHS admitted himself, the NHS has not been good enough at negotiating a price for drugs. Many drugs have been delisted because they were deemed too expensive. The drug Imnovid, which would benefit my constituent Graham, costs the NHS £115,000 a year, compared with £90,000 in Spain.

The failure to negotiate the best price was demonstrated by the fact that when threatened with removal from the list, some manufacturers were able to offer a lower price for their drugs. I understand that Imnovid was already offered at a discounted price, but I cannot blame drug manufacturers for not immediately offering the lowest price that they can afford. They need profits to use on research and development and to show value for their investments. Will the lack of positive outcomes from the price negotiations be addressed in the new CDF proposals? Also, can the Minister provide information on the number of negotiations between NHS England and drug manufacturers that have been positively resolved, and which drugs they relate to?

The new Cancer Drugs Fund proposals aim to distribute more evenly the financial risk of placing a drug in the fund, but the Rarer Cancers Foundation strongly suggests that the NHS has not been flexible in negotiating with pharmaceutical companies on value propositions for treatments in the fund. Can the Minister confirm whether NHS England rejected multi-treatment cost reductions from drug companies because they would have fallen outside NHS England’s standard operating procedure? Likewise, from evidence given to the Public Accounts Committee, it is clear that some companies have offered financial schemes stating that if the medicine does not work as expected, its cost will be returned to the NHS, but have been turned down in favour of straight discount schemes. Together, such schemes would offer a win for the taxpayer and would have allowed more drugs to be made available for the fund.

My final comments concern the proposed reforms of the appraisal process for drugs on the fund, which under current plans will be put solely in the hands of NICE. The proposal is that the CDF should become a managed access fund for new cancer drugs, as my hon. Friend the Member for Solihull (Julian Knight) mentioned, with clear entry and exit criteria. It would be used to enable access to drugs that appear promising but for which NICE indicates that there is insufficient evidence to support a recommendation for routine commissioning. At the end of the period, the drug would go through a short NICE appraisal, using the additional evidence.

For those looking for treatment for rarer cancers, such as myeloma, there are a number of questions about the new proposals that need to be addressed to ensure access to new treatments. As I understand it, under the new proposals, only a limited number of patients will have treatment funded through the CDF, and the industry is expected to fund additional patients. The consultation sets out NHS England’s proposal to limit funding for each drug on the CDF to the number of patients required to be treated in order to gain further evidence for use in NICE appraisal. The consultation is not clear what data NICE might require to be gathered during the CDF funding phase or the indicative size of patient populations. It is therefore difficult to assess whether the proposals would result in more or fewer patients getting access to treatment than the current arrangements.

What consideration is there of drugs for rarer cancers, which will have smaller patient pools creating only a small amount of data? Does the appraisal process have flexibility for such drugs? It is not clear whether pharmaceutical companies will be willing to fund patients for the 24 months required to allow data to mature if they think the likelihood of NICE approval at the end remains small. That could result in patients losing out once again on innovative treatments, or a situation in which drugs are put on the fund list and taken off in 24-month cycles, leading to uncertainty for patients about which drugs they have access to, just like the uncertainty caused by the current delisting.

I would like reassurances from the Minister that patients seeking treatment after the number of patients required to be treated in order to gain further evidence has been reached will not be denied treatment given to others in their situation. Does he believe that the changes to the NICE process outlined in the consultation are sufficient to ensure that more cancer treatments will receive positive NICE recommendations? Patients should be at the centre of any new decisions about the fund. Finally, I ask the Minister how the views of patients will be given greater weight in the new CDF arrangements.

[David Mowat (Warrington South) (Con)]

I have been listening carefully to my hon. Friend. Does she agree that the crux of the matter is that the NICE evaluation criteria for those sorts of drug have not been adequate? The whole genesis of the Cancer Drugs Fund is in a failure of NICE. We need to get the NICE criteria right; then we would not need a drugs fund in the current format.

[Pauline Latham]

My hon. Friend is absolutely right. NICE has not done what it should have done. I hope that the Minister will be able to rectify that failure in the system.

Resolving data collection issues, negotiating value for the taxpayer and making the NICE assessment process flexible for innovative new drugs and drugs designed to treat only a small number of patients are vital for the fund to work successfully when it re-launches in April. Will the Minister please look again at the delisted drugs and give hope to people such as Graham that they can spend longer with their loved ones? Failing to do so will not help those whom the fund is designed to help most: cancer patients and their families.

[Mr Gary Streeter (in the Chair)]

Colleagues, we have 40 minutes until the winding-up speeches begin at 3.30, so we are looking at six-minute speeches, by voluntary submission. I will call Jim Shannon first, as he has to go and chair an important all-party parliamentary group; I hope that colleagues will accept that. He has promised to speak for no more than five minutes.

--- Later in debate ---

[Pauline Latham]

I thank all Members who have taken part in this very important debate. Turning to my hon. friend the Minister, I would just like to say that imminent is great, but it might not be imminent enough for my constituent Graham. He needs help now. I accept that the Minister is doing all he can to accelerate things, but imminent might not be soon enough.

Question put and agreed to.

Resolved,

That this House has considered the removal of drugs from the Cancer Drugs Fund list.

Cardiac Screening: Young People

Pauline Latham Excerpts

Tuesday 27th October 2015 Commons Chamber

[Mims Davies]

I agree with the hon. Gentleman. We are losing fit, young, capable, able and good people, and we must do something about it. We bring our children into the world. We school and train them, and above all we love them and get them ready for a future—our future. Economically, there is a case to do something, but the emotional case is priceless.

Screening has been proven to work. In Italy, screening is mandatory for all young people who are engaged in sport, and cases of young sudden cardiac death have fallen by 90%. In this country, free screening is provided only when a young death has occurred in the family, or through the work of Cardiac Risk in the Young and the help of affected families who fundraise for that cause.

[Pauline Latham (Mid Derbyshire) (Con)]

I congratulate my hon. Friend on securing this important debate. My constituent, Sam Wright, who was a very fit young man, died suddenly. His friend, Danielle West, has fundraised on behalf of CRY and secured enough money to screen all the sixth-formers at the school that Sam used to go to. Three of those sixth-formers have had further tests. I do not know the results of those tests, but three people who knew nothing may have a condition that can now be treated. My hon. Friend’s campaign is valuable and we should continue with it.

[Mims Davies]

I absolutely agree. The UK National Screening Committee has refused to make a comprehensive offer of heart screening for young people in the UK, which I think is a scandal.

NHS Reform

Pauline Latham Excerpts

Thursday 16th July 2015 Commons Chamber

[Mr Hunt]

I would be very happy to meet the hon. Lady and clinicians. I am aware of the problems in that health economy and I am aware that they are long-standing. They are a concern to me and I would be delighted to do anything I can to support her in helping to solve them.

[Pauline Latham (Mid Derbyshire) (Con)]

I was shocked to hear the right hon. Member for Leigh (Andy Burnham) running down the NHS yet again. He obviously has not been watching the series on television about the Royal Derby hospital, or looked at its website, where most of the comments are incredibly positive. Also in Mid Derbyshire we have surgeries that wish to take some of the burden away from hospitals. Does the Secretary of State agree that we should be encouraging that, where they can offer services to save people from going to hospital?

Oral Answers to Questions

Pauline Latham Excerpts

Tuesday 2nd June 2015 Commons Chamber

[Jane Ellison]

The hon. Gentleman is right to draw attention to the important role of research. We will leave no stone unturned in looking at all aspects of the treatment or prevention of diabetes. The issue of research is something I recently discussed with the chief medical officer. I will draw to her attention the point he makes. As he knows, although health is a devolved matter we always make a point of sharing all research right across our United Kingdom.

[Pauline Latham (Mid Derbyshire) (Con)]

May I invite the new Minister with responsibility for GPs to meet me and a couple of excellent GP surgeries that want to expand their services for the local community but are being prevented by the local clinical commissioning group?

[Alistair Burt]

Of course I welcome my hon. Friend’s invitation. The innovative work being done by a number of GP practices around the country to expand services is welcomed by all; there is an opportunity to take good practice from one GP practice to another. In addition to my visit to Cornwall, I am clearly on the way to Derbyshire.

Cancer Treatment and Prevention

Pauline Latham Excerpts

Tuesday 11th March 2014 Westminster Hall

Motion made, and Question proposed, That the sitting be now adjourned.—(Mark Lancaster.)

[Pauline Latham (Mid Derbyshire) (Con)]

It is a delight to serve under your chairmanship today, Mr Gray.

During the past few months, cancer has been something of a hot topic in this House, and the Government have committed themselves to reducing the number of people who die from cancer every year. That is an admirable goal and the provision of services to cancer patients has undoubtedly improved. However, the complicated licensing procedure for cancer drugs and the lack of knowledgeable doctors are preventing patients from receiving the life-saving treatment they need.

During my tenure as an MP, I have had the privilege of working with a cancer charity called Melanoma UK. Melanoma is a cancer that is particularly close to my heart, as my brother died from a malignant melanoma when he was only 54. What is most insidious about this cancer is that it is impossible to treat in its late stages, and it often results in a drawn-out and painful death for the sufferer.

Last week, I sat in on a meeting of the Melanoma Taskforce, which is attended by experts in skin cancer, patients and their families. The consistent theme of the complaints from these experts was that initial diagnosis and referrals of potential melanoma sufferers were taking too long, which often results in sufferers receiving treatment that comes too late to save their lives. In the case of my brother, he went to the doctor three times, but the doctor said, “There is absolutely nothing wrong with you.” Eventually, he told my brother, “All right, I will refer you to Addenbrooke’s and you can go and see somebody, but I’m sure it’s fine”, by which time more than a year had passed and it was far too late.

As I say, the consistent theme of the experts’ complaints was that initial diagnosis and referrals of potential melanoma sufferers take too long, which often results in sufferers receiving treatment that comes too late to save their lives. At that meeting, I learned that medical students receive only a week or less of teaching on dermatology, and that is on the whole of dermatology, not just melanomas. Even less time was spent on teaching them how to spot the signs and symptoms of melanoma. All that is shocking, given that malignant melanoma is the fifth most common cancer in the UK.

Another piece of feedback that I received from the dermatologists who were present at that meeting is that there are simply not enough consultants in this field and the few dermatologists that there are end up being completely inundated with patients. Sadly, the figures fully support that opinion: there are only 650 dermatology consultants practising nationwide. How can so few consultants effectively deal with the influx of potential melanoma referrals? Given this state of affairs, it is imperative that the Department of Health and the UK’s teaching hospitals encourage medical students to pursue a career in dermatology.

The other bar to the survival of late-stage melanoma patients is the difficulty in accessing effective cancer drugs. As some Members may know, about two weeks ago the National Institute for Health and Care Excellence published its response to the consultation on the use of the drug ipilimumab as the first-line treatment for late-stage melanoma. Currently, the drug that is prescribed in the first instance is dacarbazine, which is generally acknowledged to be ineffective in fighting the progression of the disease. On the other hand, ipilimumab has been proven to extend people’s lives and give them a better quality of life during treatment.

One case study to recommend ipilimumab as a first-line treatment is the story of Richard Jackson, who was told that he had only weeks to live when he was diagnosed with late-stage melanoma and was prescribed the drug straight away. As a consequence of the early prescription of ipilimumab, Richard is still alive seven years after being diagnosed with melanoma. When one considers that, when he was given the diagnosis, he was planning his funeral, because he was told that he had only weeks or months to live, that is remarkable.

Dacarbazine, which is a type of chemotherapy, often leaves patients sicker than before they began using it, and they are generally progressed on to ipilimumab anyway. NICE’s decision was based on a number of factors, including cost. If the majority of patients do not benefit from dacarbazine as a first-line treatment, NICE’s decision not to use ipilimumab initially both fails to provide value in the long term for the British taxpayer and shortens people’s lives.

With that in mind, I call upon the Department of Health to make melanoma a real priority. I know that everybody wants everything to be a “real priority”, so I understand the Department’s difficulties in that respect, but melanoma can be cured if it is detected early. The Department needs to start by motivating young doctors to study dermatology, and by working with universities so that the time devoted to teaching this important subject can be extended. Most urgent, however, is the need for the Department to put pressure on NICE to offer ipilimumab as a first-line treatment to extend the life expectancy of melanoma sufferers and—perhaps vitally—improve their quality of life, so that they can continue to contribute to society for longer as well as having a better quality of life.

Ongoing changes to the UK cancer infrastructure, such as downsizing and dismantling the cancer networks in April 2013 and the National Cancer Action Team being merged into NHS Improving Quality, risk creating a gap in the cancer expertise that is used to advise and shape the NHS and the Department of Health. NHS England is looking to broaden its work in other disease areas beyond cancer. The cancer policy team at the Department has been all but abolished, with just a handful of its staff remaining. This inevitably dilutes the cancer expertise in the Department.

The overall reduction in expertise and resource in oncology will limit the ability to identify and spread best practice and drive innovation in treatment and care. Although the diversion of resources and expertise away from cancer is worrying, it is positive to see a strong policy focus on preventing people from dying prematurely, through domain 1 of the NHS outcomes framework.

Each clinical commissioning group should have at least one member with an interest in cancer. Previously, GPs benefited from better liaison with specialists via the cancer networks, and they could use the lessons learned from that approach and build on them further to create informal communities of primary and secondary care colleagues interested in cancer, to influence what is happening in CCGs.

Multidisciplinary teams for cancer should work to feed into strategic clinical networks, in the way that they previously worked with the cancer networks, to promote collaboration, consistency and quality of care. National clinical advisory groups for the common cancers should be re-established to bolster the work of strategic clinical networks in sharing best practice, supporting intelligent commissioning and driving up standards of care.

The extension of the Cancer Drugs Fund is welcome, but there is now a need for long-term clarity that, after 2016, the new pricing and reimbursement scheme will offer patients an appropriate level of access to cancer drugs that have been proven to be effective. Furthermore, we must collect better data on what medicines cancer patients across the UK need. It is also essential that NICE offers flexibility in its appraisal of cancer medicines. It should consider looking at cancer treatments under its own separate criteria, in particular measures beyond overall survival.

The Government have done a lot of good work on cancer, but there is still more to do. I am particularly interested in melanomas and bowel cancer; they are the two cancers that I tend to specialise in. There is more work to do on those cancers, and success is about early diagnosis. If we can get early diagnosis and appropriate treatment, the Government will succeed in achieving the aim of giving people longer life and better quality of life.

Oral Answers to Questions

Pauline Latham Excerpts

Tuesday 25th February 2014 Commons Chamber

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

I would like to point out to the hon. Lady that it is not unusual for doctors in training to work overseas to improve their medical experience. Many of my contemporaries did that, and every one I know has returned to work in the NHS in the UK. It is a common phenomenon that benefits doctors’ experience. What we have done, unlike the previous Government, is ensure that we now have a 100% fill rate for people entering A and E common stem training.

[Pauline Latham (Mid Derbyshire) (Con)]

T6. What assessment have the Government made of the decision by the National Institute for Health and Clinical Excellence not to recommend ipilimumab as a first-line treatment for advanced melanoma, except in clinical trials? Will the Minister join me in calling on NICE to reverse this decision and ensure that patients receive earlier access to this treatment to improve their chances of survival?

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

I know that my hon. Friend is really concerned about this, but NICE is an independent body so it would not be appropriate for me to interfere in an ongoing appraisal. NICE has recommended a number of other treatments for advanced melanoma, and NHS commissioners are required to fund them where clinicians want to use them. I want to give her some encouragement: this spring a trial will begin of an awareness programme on melanoma in the south-west of England, working with Cancer Research UK.

Cancer Priorities

Pauline Latham Excerpts

Thursday 13th February 2014 Commons Chamber

[Pauline Latham (Mid Derbyshire) (Con)]

I am delighted to be able to speak on this matter today and congratulate my hon. Friend the Member for Basildon and Billericay (Mr Baron) on securing the debate and the Backbench Business Committee on allowing it to happen. We would have had many more Members contributing to this debate if it were not on a Thursday afternoon immediately before a recess. Many Members also have problems getting home because of disrupted transport and, when they get there, they have to face flooding issues. It is disappointing that this debate was not scheduled for a much more popular time.

I also pay tribute to the hon. Member for Ashton-under-Lyne (David Heyes) for coming to talk about his personal experiences, which must have been very difficult. I am pleased to see that he is fit and well—or appears to be—and delighted that he is in the Chamber today. Like many Members, I have been affected by cancer, but not personally. A number of members of my family have unfortunately died at very young ages from various forms of the disease. I take a great interest in what happens to people who are either diagnosed with it or who have various issues with it.

One type of cancer that is particularly close to my heart is melanoma, having lost my brother to the disease 13 years ago. In 2011, more than 11,000 people were diagnosed with melanoma. It is a type of cancer that is relatively easily treatable if it is caught early. Simply removing the affected tissue can usually cure the disease. Given that it is easily treatable in its early stages, it is shocking that 11 % of those diagnosed die within the first five years. These figures would surely imply that there is a problem with awareness of the symptoms of the disease, and, as a consequence, with how long it takes patients to be diagnosed. Doctors need to get better at it. As the hon. Gentleman said, it often takes three visits to a GP before referral to a specialist. My brother went to his GP three times in a year before the GP suddenly said, “Well, there is nothing really wrong with you, but I will refer you,” By that time, it was far too late, and he died of a melanoma a few years later.

I note that the APPG’s excellent report recommends that the current advertising campaigns should continue and I am very pleased that an advertising campaign about melanoma will start in May 2014. Although preventing skin cancer is vital, the focus of the campaign should be on identifying its symptoms because, as lay people, most of us do not know what to look out for. I met one consultant who used to work in Australia, who told me that Australian school children go to school with rucksacks on their backs to take their books and kit to and from school and on each side are mesh holders, one for water and one for sun cream. We must encourage that practice in the UK, and teachers must not be frightened to help young people apply the cream in case they are labelled paedophiles. That is complete nonsense and they need to get over it and help young children who cannot apply the cream themselves.

Through my involvement with the charity Melanoma UK, I know that five-year survival rates are hampered by NICE guidelines on the treatment available to late-stage melanoma sufferers. The first line of treatment offered to patients is dacarbazine, which is generally accepted by clinicians as insufficient to treat late-stage melanoma. There is a call for NICE to recommend a second-line treatment, ipilimumab or Yervoy, in the first instance rather than dacarbazine and I believe that NICE is consulting on that.

One study that recommends ipilimumab as a first-line treatment concerns a man named Richard Jackson, who was told that he had only weeks to live when he was diagnosed. He was deciding which hymns to have at his funeral, but when he went to his doctor he decided to give him ipilimumab straight away. As a consequence of the early prescription of ipilimumab, Richard is still alive seven years after diagnosis. It does not make economic sense to use a first-line drug with such a low success rate only, in the majority of cases, to progress the patient on to ipilimumab when they are much weakened by the first drug. That gives them much less chance of doing well. Given the Government’s commitment to fighting cancer, I think it is important that pressure should be brought to bear on NICE to ensure that ipilimumab is available in the first instance. This debate is timely, because NICE is considering the issue right now.

One type of cancer that has been part of a successful national advertising campaign is, of course, bowel cancer. Perhaps Members will remember that when we had not been here for long after the 2010 election one Member wore a tie that contained a musical device that played a tune and it went off. That probably did more to raise awareness of bowel cancer than any other event. Although the Be Clear on Cancer campaign has no doubt been helpful in fighting bowel cancer, it remains to be seen whether its effects have been positive, as the results of the national cancer audit are due to be published later this year. In the interim, I welcome the APPG’s suggestion that the advertising campaign should be extended, as it will undoubtedly lead to more people being diagnosed with bowel cancer earlier.

People do not like talking about their bowels, but they should. They should not be nervous or embarrassed about it, because if they talk about things, they might realise that their symptoms are the very symptoms that are causing problems for so many people. I speak about this from personal experience because three members of my family have died of that cancer between the ages of 51 and 54, and one at 66. That is incredibly young these days. It is such a deadly disease unless, like others, it is caught early. Then, it is curable.

Although there is no mention of cancer drugs in the report, one element of cancer care that particularly concerns me is the legacy of the cancer drugs fund and what will happen to the provision of cancer drugs after its closure in 2016. The east midlands cancer drugs fund closed in 2013, and in every year of its existence it was left with lots of money to spare at the end of the financial year. One constituent of mine, Jill Bilbie, contacted me when she was funding her own treatment for cancer. It did not matter what I said or did, I could not persuade the cancer drugs fund to pay for the Avastin she so desperately needed even when it had the funding. All the fund said was that Avastin did not work, but she survived for three years on something that did not work. Sadly, she has now died, but during her illness, she paid more than £31,000 for the drugs, and people should not have to do that. It goes without saying that the cancer drugs fund and whatever replaces it in 2016 must be more flexible to the requirements of those making funding applications for drugs and must prevent the situation whereby desperate people exhaust their limited finances to fund their treatment.

Selective internal radiation therapy involving spheres is another cancer therapy that my constituents have had difficulty obtaining on the NHS. I was contacted by a constituent, Kate, who I had known for many years, who had been diagnosed with colorectal liver metastases and was trying to get that therapy to reduce the progress of the disease in her liver. As the cancer had metastasised from the primary tumour in her colon, she was refused. Once again, the guidelines for that particular treatment are insufficiently flexible and lead to premature mortality in otherwise treatable cancers. Another of my constituents managed to get the treatment not because the NHS funded it, but because she had private medical insurance. She is still alive today, which shows that the treatment works, so people should be able to get it. I am disappointed that, regarding the treatments that my constituents can get, the east midlands is a poor relation in comparison with other areas.

I generally agree with the report’s findings. A lot of effort went into the report, so I congratulate my hon. Friend the Member for Basildon and Billericay, who puts in a lot of work on the subject all the time, on bringing it forward. There must be an emphasis on the early detection of cancer, but I am worried that not enough is being done to ensure that cancer patients get the right treatment at the right time. I am pleased that the Government are aiming to reduce the number of cancer deaths every year by 5,000, but that aim is less likely to succeed if the Department of Health does not deal with early diagnosis.

Joint Committee on Vaccination and Immunisation

Pauline Latham Excerpts

Wednesday 8th January 2014 Westminster Hall

[Pauline Latham (Mid Derbyshire) (Con)]

It is a delight to serve under your chairmanship, Mr Gray. I congratulate my hon. Friend the Member for Finchley and Golders Green (Mike Freer) on securing this important debate.

I wish to change the subject and address meningitis B. A vaccine is available, and the Minister and the Department have decided that it is not cost-effective. I wonder what costs they have taken into account. Was it the lifelong costs of looking after a child such as my constituent Isabelle, who contracted meningitis B when she was seven years old? Isabelle was given a 0.7% chance of survival. She survived, but she had to have both her arms and both her legs amputated. She is the most amazing little girl. She is so bubbly, so bright and so cheerful given what she has to deal with, but there is the cost to the NHS, the cost of education and the cost of continuing care for the rest of her life—she is now 10 years old. She has to have four sets of legs and two sets of arms, which change regularly and cost thousands of pounds each. She has to have two wheelchairs, one portable and one mechanical, because she cannot walk far.

Isabelle has to have continuing care in school. Someone has to sit with her in classes because, clearly, there are things that she cannot do. She cannot easily carry her books from class to class, for instance, and she will need such care not just for the rest of her school and university life but for the rest of her working life, because she will be limited in what she is able to do.

Isabelle is the most amazing child that I have ever come across. She has come through such terrible circumstances. Her family had to make the awful decision that both her legs and both her arms had to be amputated. No parent should have to make that decision, and no child should have to live with that consequence for the rest of their life. She is not the only such child in this country; there are a lot of children in that situation with varying degrees of disability.

When the Minister reconsiders universal vaccination, will she bear it in mind that, although it is expensive, the emotional costs of what Isabelle’s family went through outweigh that expense? The Minister should consider the matter in the round, not just the cost to the NHS of vaccinating every child. We should consider what vaccination is doing for the whole country in saving money and preventing parents from having to make such a terrible decision. It must have been agony for the parents, the child and the family to survive in that situation. Will the Minister reconsider what can be done to ensure universal vaccination against meningitis B?

Oral Answers to Questions

Pauline Latham Excerpts

Tuesday 11th June 2013 Commons Chamber

[Dr Poulter]

I would be delighted to do so.

[Pauline Latham (Mid Derbyshire) (Con)]

14. What recent assessment he has made of the national cancer drugs fund list.

[The Minister of State, Department of Health (Norman Lamb)]

In April 2013, NHS England published a national list of drugs available from the fund. The list was updated recently following a meeting of the national cancer drugs fund clinical panel. Clinicians can apply to the fund for the inclusion of a drug within the approved list.

[Pauline Latham]

The cancer drugs fund is due to come to an end in less than a year. Given that more than 28,000 patients have received treatment since the CDF was introduced, what discussions has the Minister had with NHS England on continuing funding for it after the end of the current arrangements?

[Norman Lamb]

My hon. Friend has campaigned vigorously to ensure that as many people as possible get access to the drugs they need. The fund has been a great success. More than 30,000 have I think now benefited from it. We want to do all we can to ensure that the good lessons we have learned from it continue.

Health and Social Care

Pauline Latham Excerpts

Monday 13th May 2013 Commons Chamber

[Pauline Latham (Mid Derbyshire) (Con)]

It is a pleasure to speak in the health and social care debate on the Queen’s Speech, which seems to have been rather wide-ranging.

I pay tribute to the Government for introducing the Care Bill. It shows that they have listened to the concerns of many people. I support the proposals for three main reasons. First, the Bill will put people in control of their care and give them greater choice. Secondly, it will simplify the system and processes to provide the freedom and flexibility that local authorities and social workers need to innovate and achieve better results. Thirdly, it will provide people with a better understanding of what is on offer, help them to plan for the future, and ensure that they know where to go for help when they need it.

The Care Bill is essential to the modernisation of adult care and support in England. One purpose of the Bill is to set out clearly what support people can expect from the Government and what action the Government will take to help them to plan, prepare and make informed choices about their care. I support the well-being principle as an underlying principle for care and the support for carers. However, I urge colleagues in the Department of Health to monitor the implementation of the Bill carefully to ensure that local authorities are completely clear about their responsibilities.

I have a constituent who suffers from an acquired brain injury. His parents sought assistance from the adult care services department of their local authority, Derby city council, and from the primary care trust. Both organisations say that it is the other’s responsibility. That is causing great distress and frustration to my constituent’s elderly parents who are caring for him and his six-year-old child. I have written to both parties, as well as to Ministers in the Department of Health, and so far both have repeatedly refused to take responsibility.

I have also written to Health Ministers about another constituency case. A constituent of mine is suffering from severe chronic pancreatitis and has been told he needs to undergo a pancreatectomy and an islet cell transplant. However, as the national specialised commissioning group has not issued confirmation of funding for an islet cell laboratory in my region, my constituent is left suffering in extreme pain unnecessarily. I would like to see movement on the two cases that I have raised with the Department of Health.

Over the past three years, I have also raised constituency casework concerning the cancer drugs fund, and I pay tribute to my right hon. Friend the Prime Minister who set up that initiative. Some 23,000 cancer patients in England have benefited from the additional £650 million provided by the Government to fund cancer drugs.

[Mel Stride (Central Devon) (Con)]

Like my hon. Friend, I welcome the cancer drugs fund, which I think is important. About 150 of my constituents will die from cancer this year—about 100,000 people a year. Currently, 15% of 15-year-olds are regular smokers. Does my hon. Friend feel, as I do, that we should have standardised plain packaging of cigarettes to discourage the take-up of smoking and the cancer that results from it?

[Pauline Latham]

I certainly do, and having watched my mother die from lung cancer, I passionately believe in anything that will stop people smoking. It is not a pretty sight, and I would do anything to stop young people in particular taking up the drug of smoking. That is important.

[Sir Gerald Howarth]

I am grateful to my hon. Friend for giving way. Our hon. Friend the Member for Thurrock (Jackie Doyle-Price) mentioned the risk from counterfeit tobacco, which is very serious indeed. There are two risks: first that the substance will be less pure than commercial tobacco; and secondly that the Treasury will lose a tremendous amount of money as the result of trafficking.

[Pauline Latham]

There is already counterfeit tobacco, so I do not see that it would make much difference. Those who are drawn to smoking do not go over and buy counterfeit goods; they start off in this country—often under age—by buying cigarettes over the counter. If we can stop that, I passionately believe we should do so, and I am disappointed that that measure was not in the Queen’s Speech.

The cancer drugs fund is a force for good, but in my constituency of Mid Derbyshire, which was covered by the east midlands cancer drugs fund, I have had constituents who were unable to access cancer drug treatment that was available from other CDFs. In one case, if my constituent had lived just 40 minutes down the road in Burton upon Trent in the west midlands, that CDF would have paid for her treatment. She paid more than £60,000 of her own money, but since I first raised the issue she has sadly died. The reforms introduced by the Government from 1 April this year and the establishment of the national CDF will end the unfair system of the postcode lottery. Under treatments now offered by the new NHS Commissioning Board, if my constituent were alive today, she would have access to that treatment.

[Hugh Bayley]

Will the hon. Lady give way?

[Pauline Latham]

I am running short of time; I am sorry but I must make progress.

I urge my right hon. and hon. Friends on the Front Benches to look again at this matter because the Government have set up the CDF to ensure that people get access to the life-saving cancer treatment they need. I have constituents who need access to a form of radiotherapy called “SIR-Spheres”, which is used where bowel cancer has spread to the liver. That treatment is not now available anywhere in the NHS—people can pay for it, of course—although it was previously available in most CDF areas, although not the east midlands. Will the Minister look again at the issue and meet me and my constituents’ hospital consultant, Dr Jamie Mills, to see whether we can make progress?

I recently started working with the British Heart Foundation on sudden adult death syndrome after I was contacted by two constituents whose son, Sam, died suddenly as a result of cardiac arrest. He was 19 years old. SADS claims the lives of at least 12 young people such as Sam every week, but many of those fatalities are completely preventable. I knew a young man in his 20s who died in the middle of his round in a dressage competition. Like Sam, he was a very fit young man. All such young deaths are devastating for everyone concerned, family and friends alike.

The seconds and minutes after someone has a cardiac arrest are vital to ensuring their survival. Cardiopulmonary resuscitation should be used immediately until a defibrillator can be located. If those activities are used together, the potential for survival is immediately increased. In fact, here in the UK, we currently have only a 20% survival rate—that figure is for all cardiac arrests, not just cardiac arrests among young people—but in Seattle, where there is mandatory CPR education in secondary schools, the survival rate has increased to 54%. I am sorry that my hon. Friend the Under-Secretary of State for Skills in the Department for Education is no longer in the Chamber—he was here a few minutes ago. My suggestion is that, if we roll out a schools programme, we could increase survival rates, as more children are trained to undertake CPR and to follow-up with defibrillators.

I am deeply concerned about those figures. I should like to highlight the pressing need for the availability of life-saving equipment and skills in our schools. In the first instance, will the Department of Health work with local authorities through health and wellbeing boards to urge them to consider providing funding to install automated external defibrillators in all schools and other local authority facilities? AEDs are very simple to use, even for the untrained layperson. Detailed instructions on how they are to be deployed are delivered through a set of simple audio and visual commands. The machines are programmed to administer an electrical shock only if the patient’s condition requires it. In order to prevent mortality as a result of SADS, it is essential that those easy-to-use and relatively inexpensive devices are made available in schools.

Further to the availability of AEDs, it is also extremely important that, through citizenship lessons, children of school age are aware of, and able to administer, life-saving treatment such as CPR. Such a scheme would cost local authorities very little, and ultimately has the potential to save many lives every year. Organisations such as St John Ambulance would be able to go to schools to train students and teachers so that they are able to undertake such treatment.

In addition, I should like to point out to hon. Members that the British Heart Foundation provides grants to schools for defibrillators. Many schools are not aware of that. Perhaps MPs on both sides of the House could make schools in our constituencies aware of the grant. I look forward to working with the Department of Health on the issues that I have raised about the cancer drugs fund and on defibrillators.

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

It is a pleasure to follow the thoughtful speech of the hon. Member for Mid Derbyshire (Pauline Latham).

I congratulate the Government on their fine display of unity on the Queen’s Speech. In all my years in the Whips Office, I cannot recall seeing anything quite like it. In the early days of the Government, the ambition was simple: wipe out the deficit in a single Parliament, set debt on a downward path and restore health to the economy. Hon. Members were to judge success by how the credit ratings agencies maintained the triple A rating. Simple! The Government now claim that their ambition is to cut the deficit by a third, but almost everyone else believes it is more likely to be cut by only a quarter. That is our lot for the rest of the Parliament. Debt is rising, not falling, and triple A credit ratings are but a distant memory.

After the costs in administrative chaos caused by the top-down reorganisation of the health service, which the Prime Minister promised would not happen, the Government are turning their hand to social care. They are right to do so, at least in the sense that social care is a time bomb that desperately needs tackling. My most recent survey of constituents in Selly Oak shows that 73% of them consider care to be an issue of extreme importance, and only 42% think that the quality of care received by someone close to them is satisfactory.

People are struggling—people such as Mrs Hanslow, who cares for her 96-year-old father. She asks only for the odd break, and in the past she has arranged that by phoning a social worker. When she tried that this February, she discovered that the social worker had left. The office said that somebody would phone her back, but nobody did. She phoned again and was told that she needed to make a fresh application; apparently, files and arrangements leave with the social workers these days.

After several abortive attempts, Mrs Hanslow spoke to a nice lady called Wendy, who said that she would sort the situation out. Then a Mrs Collins rang saying that she was arranging for a social worker to come. But guess what? Mrs Hanslow waited in all day and no one came. Frustrated, she rang again and spoke to a Jackie, who could find no record of her application or complaint but said that someone would ring her back. No one rang, so Mrs Hanslow phoned again. This time, people at the office were not so nice. Mrs Hanslow was told that nothing had been reported because the social worker was out of the office.

[Pauline Latham]

What the hon. Gentleman is describing is the fault of the local authority, not the Government. The local authority is responsible for social workers, not the Government.