A government minister praised Hove MP Mike Weatherley for his thought-provoking and heartening speech about his battle with oesophageal cancer.
Junior Health Minister Jane Ellison, a fellow Conservative, said: “Things are improving but there is much work still to be done.
“We are committed to improving cancer survival rates and building on the improvements we have made so far.”
Here is the official transcript of the debate initiated by Mr Weatherley in the House of Commons last night (Monday 23 February).
Mr Weatherley said: “In November 2011 I had my dinner as normal but what was not normal was that it did not settle well and I threw up.
“I dismissed it as probably a bug of some sort but then it happened again a few days later.
“Clearly something was not right but I did not relish the hassle of getting an appointment to see my doctor.
“I hate going to see my GP, not because I do not like her but because the booking system is so frustrating.
“I put it off for another week or so but by mid-December 2011, still throwing up occasionally, I decided to battle the booking system and I went to see my wonderful GP.
“She referred me to the local NHS hospital and five weeks later I got an appointment to see a gastroenterologist.
“The first diagnosis was excess stomach acid so I was put on antacids and on the list for both an endoscopy and colonoscopy.
“Unfortunately, the painful probes were inconclusive as was the follow-up CT scan – nothing was really found other than a severely restrictive oesophagus – but by now eating was becoming a major problem.
“There are many people who influence and shape a life but when someone saves a life – well, that is something very special.
“Professor Robert Mason is one of those exceptional people. He drew on all his experience and, despite no conclusive evidence, he insisted I came in immediately to have my oesophagus removed.
“Of course, I argued against this, asking for key-hole surgery or to defer the operation until the summer after more tests but Professor Mason insisted until I changed my mind and a date was set for 18 April 2012.
“When I was in the pre-op room, I was asked what I had done to prepare in the morning and I said I had gone to work and indeed I had.
“I went into Parliament in the morning and drafted letters to constituents and at the required time I popped across the river and slipped on the less-than-flattering gown.
“It turns out that the surgery is equivalent to a triple heart bypass – the whole oesophagus is removed plus, in my case, a third of the stomach.
“May I pause here to thank all the doctors and nurses who looked after me at St Thomas’ and especially the nurses in the high dependency unit, who were simply fantastic and a tribute to the NHS?
“I must also mention a second person who was integral to saving my life – James Gossage, who carried out the surgery along with Professor Mason, and who carried out many post-operative follow-up surgical procedures.
“Mr Gossage is an exceptionally nice specialist who has a dedication to his profession that is inspirational.
“Despite the ordeal, the worst moment was still to come. Until this point no cancer had been detected but, a week after the operation, Professor Mason came in and gave me the confirmation – the biopsy confirmed stage three cancer.
“There is nothing in this world that can prepare someone for the words, ‘You have cancer.’
“Sadly, oesophageal cancer is particularly aggressive and more than half of oesophageal cancer patients die within a year.
“All sorts of things go through your mind when you hear stats like that, from severe regret about potentially not seeing your kids get married to even more regret about not being treated earlier – every week really does matter – and many more dark thoughts.
“A sobering fact is that if Professor Mason had not insisted that the operation should be in April and, if he had agreed to wait until July as I wanted, it seems very likely that I would have been dead by Christmas 2012.
“Step up the third person I owe my life to – Andy Gaya, who was in charge of my post-operative treatments.
“Intensive revolutionary radiotherapy and chemotherapy followed. There were days when I was so exhausted that I could not even reach out for the remote control to change TV channels.
“Andy Gaya made sure that I was going to be given the best chance of survival.
“We know that almost certainly some cancer cells were not removed during the surgery and the treatments, while not pleasant, had to be intensive and push the boundaries in order to be sure that the cancer was treated.
“Of course, there is a fourth member of the care team that I owe my life to and that is my partner Niki.
“I cannot imagine how difficult it is for anyone going through this experience without someone holding their hand throughout.
“We throw around stats and theoretical outcomes but the reality is that there is a whole army of real people behind every medical condition.
“In my case there are four people who I can say directly saved my life plus a huge number of attentive hospital staff, post-operative specialists, district care nurses, GPs and others.
“Having seen the NHS from the inside, I can of course see many areas where it is easy to say that this or that could be done better and of course it is not perfect but the reality is that it is an amazing institution that performs incredibly well.
“That is a result of the amazing people who work in that rightly cherished organisation.
“However, I need to mention the opposite side of the spectrum. There are a lot of people out there in society who should hang their heads in shame.
“Around that time, as a result of my work in Parliament on various issues, I was getting death threats and other hate-filled correspondence, including from many people who simply tweeted with #getcancer.
“I wanted to reply saying, ‘Too late – already have it!’ But of course I refrained.
“The experience served as a stark contrast.
“On the one hand I was seeing the best of society in the care delivered by really caring people but then there were the despicable members of society who contributed nothing positive.
“When I asked the Prime Minister to hold Russia to account for gay rights violations, I got one particularly nasty threat which the police tracked down to a 24-year-old postgraduate from Manchester who said that she thought it would ‘be a laugh’.
“Anyone who supports that kind of hatred should spend a day in a hospital to see just how lucky they are and how great doing good is.
“It is projected that by 2020 more than half the European population will receive a cancer diagnosis sometime in their life.
“However, the rates of cancer survival in the UK rank among the worst in Europe. Reasons for that include, but are not limited to, late diagnosis and a lack of treatment options for cancer patients.
“In fact, a major study of more than 29 European countries found that the survival rates of almost all the most common cancers are worse in Britain than the European average.
“How will the NHS cope when, within five years, more than half a million people will be diagnosed?
“As a cancer survivor – I say ‘survivor’ but all people who have had the disease know that it can come back at any time so we are really just in remission – there are a few things that I have learnt.
“Cancer support groups such as Macmillan Cancer Support and the Oesophageal Patients Association are key in providing aid and comfort to those with cancer.
“Beside providing emotional support to victims of cancer and their families, they often go the extra mile to provide information on matters such as treatment options, local support groups, holistic alternatives to surgery and chemotherapy and cancer prevention.
“I was lucky – I had a great partner who helped me through it all and I did not need to use the support services.
“I did have one moment in a restaurant when I could not eat and hit a terrible low and I started reaching for the support line but for the most part I did not have to fight it on my own.
“Sadly, many do and such support groups are vital.
“It is involved in the campaign to increase awareness and in expanding our self-care groups across the UK.
“My thanks go also to Alan Moss, chairman of Action Against Heartburn, for his input into this speech.
“More than 331,000 people are diagnosed with cancer each year in the UK. More than one in four deaths are caused by it and 161,000 people died of it in 2012.
“Cancer is primarily a disease of old people – more than 50 per cent of cases occur in those aged 75 or more – but, surprisingly, it is also the most common cause of death in children aged between 8 and 14.
“In those aged between 25 and 49, cancer accounts for 18 per cent of all deaths and 41 per cent of deaths among those aged between 50 and 74 are related to it.”
Jim Shannon, the Democratic Unionist Party MP for Strangford, said: “In Northern Ireland the mortality rate among women with oesophageal cancer is rising and the five-year survival rate among men is only 16 per cent.
“That indicates a need for resources to be directed towards oesophageal cancer throughout the United Kingdom.
“Does the honourable gentleman agree that it may be time for a UK-wide strategy to be applied to all four regions?”
Mr Weatherley said: “I could not agree more. Early diagnosis is one of the key recommendations that I shall be making.
“It is estimated that 2.5 million people are living with and beyond cancer and we know that at least one in four cancer survivors face poor health or disability after treatment.
“Cancer of the oesophagus is the eighth most common type of cancer in the UK among men.
“Only 40 per cent of those who are diagnosed with it will live for at least one year after the diagnosis and, tragically, 85 per cent will die within five years.
“Let me put that into a personal perspective. According to the statistics, if I survive for another four years, I shall be part of a very small minority of just 15 per cent.
“When people ask why I am leaving Parliament after one term I reply that one of the reasons is that, given such a high probability, there is a chance that I will not see out another parliament and that does make one think about other options.”
Steve Brine, the Conservative MP for Winchester, said: “I congratulate my honourable friend on raising this issue in the House. As ever, he is making a powerful speech.
“He will know – because he is living proof of it – that oesophageal cancer is curable if diagnosed early and, I know from all the work that has been done in connection with cancer, and particularly as a result of the interest that I have taken in the House over the years in the subject of breast cancer, that early diagnosis is the key.
“However, although timely and equitable access to diagnostic tests is hugely important, there is considerable evidence that access to referral for endoscopies is not as readily available in less affluent areas and that treatments differ widely across the country.
“The equity of access for endoscopies from which my honourable friend was so lucky to benefit is the key to early diagnosis and hence to enabling many more people to survive oesophageal cancer.”
“Crucially, as with many other types of cancer, the outcome of oesophageal cancer depends on how advanced it is when it is diagnosed.
“The reason not many people can have surgery is that by the time a difficulty in swallowing is recognised, the tumour has become fairly large and has spread.
“As my honourable friend pointed out, the surgeons see most people when they are already too late for curative treatment which makes it difficult to identify survival rates for each individual stage of the disease.
“What measures would I like the minister to consider? Let me make six points.
“First and, I think, most important, we should make the process of seeing the doctor much easier.
“No one should be put off from making an appointment at the first available opportunity.
“Access to evening and weekend GP clinics remains patchy at best and, as we know, that has a knock-on effect on A&E departments.
“Secondly, we should make every effort to improve testing at the point of contact with GPs and to ensure that there is rapid follow-up access to hospital diagnostic tests.
“Giving some GPs direct access to hospital specialist tests such as endoscopies and CT scanning would speed up the process of diagnosis.
“A good oesophageal awareness campaign is currently running on television.
“Fourthly, I believe there are some ‘quick wins’ which, if implemented, could speed up processes, remove inefficiencies and save money.
“For example, at the moment if someone is referred for a chest X-ray and the findings are abnormal, the results go back to the consultant or GP and the person has to have another appointment before they can be referred for an additional test such as a CT scan.
“If a chest x-ray was found to be abnormal and the person was then referred straight for a CT scan it would save on unnecessary GP or consultant appointments and ensure that, when the person is seen, their GP or consultant has all the information they need to make a diagnosis and set out next steps.
“Fifthly, another factor in poor care is that it is almost invariably because of pressure on specialists due to the volume of work.
“When campaigns are announced by the government, they create a surge in demand which causes problems for medical staff because they cannot cope with the high volume of work.
“I would like the minister to consider allocating extra resources for endoscopy.
“Targets and high outputs mean that patients are treated as statistics rather than as individuals.
“Take this quote, for example, from an upper-GI surgeon: ‘I get lists of potential 62-day target breaches with no details of the patients themselves.
“‘We see about 20 patients in two hours in our cancer clinic on the one morning we have for these appointments – that equates to just six minutes per patient.
“Here is a similar point direct from another specialist surgeon: ‘I fully support the Action Against Heartburn organisation emphasising the need to take seriously symptoms of persistent heartburn and dysphagia and not having more and more medications without investigation.’
“This will increase demand on endoscopy services significantly, as well as CT scanning, which of course would need extra funding to cope.
“However, the increased detection of early disease will enable more minimally invasive endoscopic therapy, avoiding surgery and saving money.”
Julian Lewis, the Conservative MP for New Forest East, said: “I recently had the advantage of an intensive briefing on oesophageal cancer from Professor Tim Underwood, a specialist at Southampton General.
“My honourable friend may be interested to know that it is developing a technique that would enable the discovery of the cancer cells earlier and without an endoscopy being carried out.
“Research is constantly going on to try to remedy the very problem that he has identified so clearly.”
Mr Weatherley said: “I thank my honourable friend for that intervention and my surgeons have made similar points to me. Clearly the tools are available to do that.
“The sixth strategy I recommend is greater hospice care to provide end-of-life care away from hospitals that supports people and allows them to spend their final weeks and days in a place of their choice rather than in a hospital bed.
“The first is an increased awareness of this cancer, with many more people detecting problems earlier. If we can save lives through early detection, that has to be a good thing.
“The second is a commitment to additional specific resources. Of course this would mean more money being allocated and I am well aware that there are huge conflicting demands on limited budgets but part of this could be achieved by a quicker, more efficient diagnostic procedure.
“Our radiotherapy capacity is far short of what we need and access to the latest advanced techniques to spare normal tissues is limited – although I would stress again that, as my honourable friend the Member for New Forest East (Dr Lewis) said, we do have diagnostic tools to deal with this disease and change outcomes so it is not a huge step to save more lives.
“I look forward to hearing the minister’s comments and, hopefully, government determination to be on the patient’s side in treating this particular cancer.
“We really do need to improve on just 15 per cent of patients living longer than five years once diagnosed.”
Health Minister Jane Ellison said: “I congratulate my honourable friend the Member for Hove on both securing this debate and moving it in such a personal way and giving us an account of his own experience of this dreadful disease.
“I am sure his words will resonate with all of us who have listened tonight and in particular the way he took us on that journey from the first difficult moments of diagnosis through to treatment.
“It was a vivid and thought-provoking but also a heartening account.
“My honourable friend is absolutely right to draw attention to the dedicated and inspirational NHS staff who work so passionately up and down the country for their patients.
“How nice it was of him to take the opportunity to put that on record this evening. That was tremendous.
“Never is the debt of gratitude we owe the NHS staff felt more keenly than when we personally benefit from the care they provide, often at our most vulnerable and weak moments.
“They are, as he says, not just care-givers but life-savers in those situations.
“My honourable friend rightly challenged us to do better in this area.
“Improving cancer outcomes is a major priority for this government and, as the annual report on our cancer outcomes strategy last December showed, we are on track to save an extra 12,000 lives a year by 2015. That is the projection based on the figures to date.
“We all want to see the best possible results for all cancer patients but he was right to highlight the fact that outcomes are particularly poor for patients with oesophageal cancer.
“I am aware, from all our debates, that this is an area in which we have not seen the sort of movement that we have seen with other cancers.
“Each year in England about 7,000 people are diagnosed with oesophageal cancer and 6,000 people are diagnosed with stomach cancer.
“Those diseases cause around 10,200 deaths in England each year.
“We had some exciting news recently. The NHS England cancer taskforce was announced on 11 January.
“NHS England announced that this new independent cancer taskforce would develop a five-year action plan for cancer services with the aim of improving survival rates and saving thousands of lives in England.
“The cancer taskforce has been set up to produce a new cross-system national cancer strategy to take us through the next five years to 2020, building on NHS England’s vision for improving cancer outcomes that was set out in the NHS’s Five-Year Forward View.
“It was formed in partnership with lots of different cancer charities and other parts of the cancer community along with other health system leaders and it is chaired by Dr Harpal Kumar, the chief executive of Cancer Research UK.
“The taskforce will cover the whole cancer pathway through prevention, diagnosis and treatment to provide support for those living with and beyond cancer and end-of-life care as well as covering how all those services will need to develop and innovate.
“My honourable friend was right to challenge us to look creatively at different ways of doing things and that is exactly what the taskforce has been charged with doing.
“NHS England is assessing the opportunity for improved cancer care and will produce initial views by March – next month – with the new five-year cancer strategy to be published in the summer.
“As my honourable friend emphasised, early diagnosis is absolutely key.
“Tackling late diagnosis will be an important element if we are to achieve our ambition to improve cancer outcomes which is why our cancer strategy invested £450 million during this parliament in improving earlier diagnosis.
“As his own experience has attested, it can be difficult to diagnose oesophageal cancer, especially in its early stages.
“I congratulate him again on securing this debate and I hope that there is someone out there tuning into the debate who has heard his words.
“I am sure that they will help to publicise the message about taking notice of symptoms.
“When symptoms do manifest themselves, it is often an indication that the cancer has developed. That is why early diagnosis is crucial.
“Just under 70 per cent of people diagnosed with oesophago-gastric cancers at the earliest stage survive for at least five years.
“My honourable friend has highlighted what it means in human terms for those who are diagnosed at a very late stage.
“It has been estimated that around 950 lives could be saved in England each year if our survival rates for oesophageal and stomach cancers matched the best in Europe and that clearly has to be our aim. We have to do better.
“NHS England has launched a major early diagnosis programme, working together with Cancer Research UK and Macmillan Cancer Support to test new approaches to identifying cancer more quickly.
“I hope that that programme will give my honourable friend some encouragement because it touches on some of the issues that he has mentioned.
“It will include offering patients the option to self-refer for diagnostic tests, lowering the threshold for GP referrals, creating a pathway for vague symptoms and setting up multi-disciplinary diagnostic centres so that patients can have several tests done at the same place on the same day.”
Mr Brine said: “Southampton has been mentioned as has my constituent Tim Underwood who leads the team there.
“What the minister is saying is absolutely right. Does she agree that regional centres such as Southampton – which do things that, quite rightly, not everyone does – are the key to providing regional areas of specialism to help us to do even better on the diagnosis and treatment of oesophageal cancer?”
The minister said: “In a recent backbench debate on cancer mention was made of the tension that we all feel as constituency members between the desire to have services near by and the recognition that the expertise resulting from seeing lots of cancers, particularly the rarer ones, is really important to developing clinical excellence.
“We have to be clear that there are areas where concentrating excellence and clinical experience will save lives and my honourable friend perhaps highlights one such area.
“We often underestimate just how few cancers of any kind the average GP sees and that is especially true of rarer cancers.
“Let me go back to the different ways of looking at earlier diagnosis. NHS England’s aim is to evaluate these innovative initiatives across more than 60 centres around England to collect evidence on approaches that could be implemented from 2016-17.
“In 2013 Macmillan Cancer Support, partly funded by the Department (of Health), piloted an electronic cancer decision support – CDS – tool for GPs to use in their routine practice.
“It covers lung, colorectal, pancreatic, oesophagus and stomach and ovarian cancers.
“Following the pilot the CDS tool has been refined and is currently installed in more than 1,000 GP practices across the UK.
“It is designed exactly to deal with the point about helping people who do not see certain things very often with those diagnostics.
“Macmillan is working with software companies to adapt the CDS for different IT systems and make it available to GPs as part of their standard software offer.
“I just wish to mention the Be Clear on Cancer campaign, which I am glad my honourable friend the Member for Hove mentioned.”
“One of the most striking things that my honourable friend the Member for Hove said was that a consultant will get only six minutes with a patient.
“Will the minister explain what the government are going to do to make sure that consultants have enough capacity to deal with the extra demand that is likely as a result of these laudable new methods?”
Jane Ellison said: “The cancer taskforce is charged with looking at all those challenges and resolving those tensions.
“But the NHS’s own Five-Year Forward View considers some of the ways in which it can be innovative about the use of consultants and the interaction between primary and secondary care and whether we can do more by looking at that differently.
“If my honourable friend is interested in that, it is definitely worth looking at.
“That is very much the sense of direction and we are now looking to the cancer taskforce to examine all those issues.
“Parliamentary all-party groups have been asked by the cancer taskforce to contribute to its review and we ascertained that before the backbench debate.
He highlights a fair point – all these things bring their challenges and that is one reason why we put so much effort into testing the Be Clear on Cancer campaign.
“I was delighted that the recent pilot of the Be Clear on Cancer campaign for oesophageal and stomach cancer in the north east and north Cumbria was so successful.
“We carry out the pilots in order to understand what additional demand they create in the system so we can model that and cope with it if the campaigns are rolled out.
“A variety of face-to-face events were held across the country in venues such as shopping centres.
“The campaign aimed to raise awareness of the symptoms of oesophageal and stomach cancers and to encourage those with symptoms such as persistent heartburn to visit their GP.
“The campaign was targeted at men and women aged 50 and over.
“Of the nearly 13,000 people who are diagnosed with oesophageal or stomach cancer each year in England, more than nine out of 10 are aged 50 and over.
“The campaign was also aimed at friends and family, who can encourage those with symptoms to make an appointment with their doctor if they are concerned.
“We are all aware of those times when despite knowing what is good for us, we need a loved one to say, ‘It is time to go to the doctor.’ The campaign takes that into account.
“Let me deal with the clear and good points made about endoscopy, including by my honourable friend the Member for Winchester.
“A joint endoscopy working group, set up by the NHS England’s national clinical director on diagnostics and imaging, has been analysing the latest data, and an action plan has been developed to ensure sufficient capacity in the short and long term.
“Let me briefly mention treatment. NHS England’s oesophageal and gastric cancer service specification clearly defines what it expects to be in place for providers to offer evidence-based, safe and effective oesophageal cancer services in line with the National Institute for Health and Care Excellence’s clinical guideline, Improving Outcomes in Upper Gastro-intestinal Cancers.
“I want to touch on research because people should understand what we are doing to invest in understanding more about these specialist areas.
“The National Institute for Health Research has awarded £2 million for a research professorship with a focus on improving outcomes for oesophageal cancer through innovative screening and surveillance tests.
“It is also funding a £2 million trial of palliative radiotherapy in addition to self-expanding metal stents for improving outcomes of dysphagia and survival from advanced oesophageal cancer.
“The NIHR clinical research network is currently recruiting for 24 clinical trials and studies in oesophageal cancer.
“I do not underestimate the challenge of improving outcomes for people with oesophageal cancer.
“However, I hope that what I have briefly set out here shows that we are committed to improving cancer care through building greater awareness among the public, targeted and high-profile awareness campaigns, such as the Be Clear on Cancer, using technology and innovation to support GPs to better identify symptoms and improve the referral process, and taking action to ensure sufficient capacity in areas such as endoscopy.
“Things are improving. But there is much work still to be done.
“We are committed to improving cancer survival rates and building on the improvements we have made so far so that we have the best cancer outcomes in Europe.
“My honourable friend ’s speech tonight illustrated far more eloquently than I can, with all my facts, figures and statistics, why that is important to our fellow countrymen and women and why it is so important that we continue to make progress and I thank him for highlighting that this evening.”