Ovarian Cancer: Diagnosis and Treatment

Jim Shannon Excerpts

Tuesday 30th October 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for North East Derbyshire (Lee Rowley) on securing this debate. He is right that ovarian cancer does not affect us men, but it affects people we know, and that is why we are here. I thank him for his introduction and for the extensive work he has done on the issue in his role as vice chair of the all-party parliamentary group on ovarian cancer. I was particularly impressed by the group’s report, “Diagnosing ovarian cancer sooner: what more can be done?”. If hon. Members have not had a chance to read it, I suggest that they do so, because it is very helpful. It was published earlier this year and contains a number of key recommendations and findings, which I will pick up on today.

Every single year, more than 7,000 women across the United Kingdom receive the devastating news that they have ovarian cancer. The hon. Gentleman, in his examples at the end of his speech, referred to those who have survived and those who have not; it is important to realise that sometimes people do survive it. Unfortunately, in my time as an elected representative, most of the people I have known who have had it have caught it at a late stage and have not lived as long as perhaps they could have. UK survival rates are among the lowest in Europe and less than half of all women diagnosed with ovarian cancer survive five years or longer.

The fact that we are at the lower end of that league table is an indication that perhaps we need to do more. I look to the Minister, as we always do, for a positive response. We also know that the earlier a person is diagnosed, the better chance they have of beating the disease. More than a quarter of women with ovarian cancer are diagnosed through an emergency presentation, for example via accident and emergency. The hon. Gentleman referred to those who thought they had irritable bowel syndrome, had a bad stomach or were bloated, or whatever it might be, and suddenly found it was something much greater. Over 80% of women diagnosed following a GP referral will survive for a year or more. I think if an early diagnosis can be made, the figures speak for themselves. We must do more to raise awareness about the disease, something I will come on to later.

Before I continue, I would like to share a bit of welcome news for ovarian cancer patients in Northern Ireland. As colleagues may be aware, drugs approved by the National Institute for Health and Care Excellence for use through the cancer drugs fund in England are now being considered in line with the country’s existing endorsement of NICE recommendations and will be equally accessible in Northern Ireland. That has just been announced recently. In cases where a drug is yet to be fully approved by NICE, it can be made available for use under the CDF. I will mention one lady who is no longer with us, Una Crudden, who I got to know when she met us here, as someone who had had ovarian cancer. I think it was six years after her diagnosis. She was a remarkable lady and her story was a very real one: I remember it probably every day of my life.

CDF-approved drugs were previously unavailable in Northern Ireland, meaning that patients had to wait for their full approval by NICE, which can take up to two years. This change in Northern Ireland will help more people to survive, and for longer.

[David Simpson (Upper Bann) (DUP)]

Whenever ladies go through this treatment, their aftercare and companionship with other people is important. Will my hon. Friend join me in congratulating a lady in my constituency, Mrs Maureen Clarke, who set up the Angels of Hope charity some years ago? It has been a tremendous help, psychologically and in every other way, for people who suffer from ovarian cancer.

--- Later in debate ---

[Jim Shannon]

I wholeheartedly support the tremendous work of the great many people in charities and elsewhere. Una Crudden was one of those who inspired everyone around her. We think of her often.

Without CDF approval, cancer patients in Northern Ireland have been unable to access life-extending drugs that have been approved for use in England, Wales and Scotland, such as niraparib. It is a PARP inhibitor, meaning that it blocks the action of the enzymes PARP1 and PARP2, which help to repair any damaged DNA in cancer cells while they divide to make new cells. Niraparib blocks PARP enzymes, which is incredibly important, and it is good news that we will have direct access to it in Northern Ireland. When researchers trialled niraparib on women with ovarian cancer, they discovered that the women lived for longer without the disease worsening and could go significantly increased times between treatments, meaning that they had more time between chemotherapy sessions.

Almost 200 women in Northern Ireland are diagnosed with ovarian cancer every year, and more than 50% lose their battle with it. It is particularly frustrating and upsetting for patients, and their families, who did not have access to the same potentially life-changing drugs as their English, Scottish and Welsh counterparts. However, that has changed in the last month; patients in Northern Ireland are finally set to have the same access to drugs as those in the rest of the United Kingdom. According to reports, the implementation of this policy will take place at some point in this financial year. We look forward to that. I am sure that colleagues will join me and my hon. Friend the Member for Upper Bann (David Simpson) in welcoming this fantastic news.

Access to drugs is one thing, but it is reactionary, rather than preventive. Evidence, including in the APPG’s report, suggest that much more needs to be done to raise awareness about ovarian cancer, which could affect the number of people diagnosed with the disease. Early diagnoses give longer life and prevent death. Although not limited to these, the four main symptoms are abdominal pain, bloating, feeling full quickly and needing to pass water. Most concerning is that only 20% of women could correctly identify those as being symptomatic of ovarian cancer, which goes back to a point made by the hon. Member for North East Derbyshire.

Ovarian cancer has low survival rates and, sometimes, delays in diagnosis, so we need a reinvigorated effort to ensure that the general public know what to look out for and when to see a doctor. The Be Clear on Cancer campaign was introduced in 2011, and I take this opportunity to put on the record my thanks to Public Health England for launching it. It is an excellent campaign that has undoubtedly played a vital role in improving cancer awareness more generally among the general population, which is part of the strategy’s focus.

National campaigns have been successfully run for bowel, lung, breast, bladder and kidney cancers, but only regional and local pilot campaigns have been launched for ovarian cancer. Does the Minister intend to launch a pilot campaign for ovarian cancer? A regional campaign launched in 2014 included the use of television, radio, online and face-to-face events and led to a significant improvement in women’s awareness of the symptoms of ovarian cancer and a greater inclination to visit their GP to discuss any concerns that they might have.

Raising awareness—especially about potential symptoms —is obviously important and can only be a good thing, so I will be grateful if the Minister indicates what discussions he has had with Public Health England about the possibility of running a national campaign for ovarian cancer that covers the four nations. We could work together to raise awareness at every level. I always think it is better to do things together. As you know, Mr Bone, we are better together in everything that we do, and I would like that to continue to be the case, especially for this.

Another way to improve awareness about ovarian cancer would be the introduction of a national screening programme. Screening programmes exist for breast and cervical cancer, but there is no equivalent for ovarian cancer. I understand that the UK collaborative trial of ovarian cancer screening looked at the possibility of an ovarian cancer screening programme, with a blood test to identify changes in the levels of the CA 125 protein, which is a tell-tale sign. If levels had risen, the patient would be sent for an ultrasound, so a system would be in place to offer early diagnosis, and it would be preventive as well. It is estimated that, if a national screening programme were rolled out, 12.5 million women over the age of 50 would be eligible to attend, with around 2% required to have a further ultrasound. Such a programme could take preventive help to the next stage.

I understand that, when women are contacted about making an appointment for a cervical or breast cancer screening, they are provided with informative leaflets that detail possible symptoms. Of course, although the screenings are vital, it is entirely up to the patient if they follow up and make an appointment. However, just having access to the leaflets is helpful in raising awareness. Does the Minister intend to produce a leaflet to raise awareness of ovarian cancer? Recognition of the symptoms of ovarian cancer remains low, so it would be helpful if women were provided with a similar leaflet that might help to improve awareness of this specific disease.

I understand that the cost of national screening programmes is high, but that needs to be measured against the long-term benefits. If people can be screened and ovarian cancer caught early, people have a greater chance of survival, and their long-term reliance on the NHS could well be reduced. That is ultimately cost-effective, because it reduces the amount of care that they later need.

I understand that one concern with rolling out a screening programme of that nature is the lack of sonographers, who are of course required to provide ultrasounds. Are the staff with those skills in place? I am interested to hear what consideration has been given to the use of artificial intelligence to fill the gap of highly skilled diagnosticians. Would it be possible to provide some sort of incentive for those considering postgraduate UK ultrasound qualifications? We often say this, and I know that the Minister is responsive to it, but if we set out the graduate positions that will be available in the future and encourage graduates to study towards those jobs, that will be helpful.

Prevention is vital. Approximately 15% of women with ovarian cancer develop it as a result of a mutation in the BRCA1 or BRCA2 gene. Identifying women with ovarian cancer with a BRCA mutation not only helps in designing their treatment plans; it enables family members to be tested. We sometimes look at the individual, which is important, but we should also look at the family circle—sisters and daughters and so on—and test them as well, which would allow them to make decisions about reducing their risk of developing ovarian cancer.

“Achieving world-class cancer outcomes: a strategy for England 2015-2020” calls for all women with ovarian cancer to be offered access to genetic testing at the point of diagnosis. That follows 2013 NICE guidelines that require all women with a 10% or higher risk of carrying a BRCA mutation to be offered genetic testing. However, in reality, testing varies between regions and between hospitals, because the guidelines are often interpreted differently. This clearly needs to be addressed, as the same testing should be available for all, without variation depending on postcode or because of the funding—or lack thereof—available in different genetic testing centres across the country. Obviously if eligible family members were tested to identify potential mutations, they might be able to take steps, including surgery, to ensure that ovarian cancer cannot occur.

Concerns have been raised about what genetic testing could mean for individuals with private health or life insurance. Members may not have thought of this, and the hon. Member for North East Derbyshire did not mention it, but he and others will be aware of it. For example, does a person with private health or life insurance need to declare if a genetic test has been carried out, and its results? I am interested to hear from the Minister what work the Department is doing alongside the insurance industry to address any disparity for cancer patients and their families who undergo genetic testing, which may have an impact on their private health or life insurance.

We can all agree that, while improvements have been made in the last couple of decades, survival rates for ovarian cancer continue to lag behind other cancers. We need to do more to raise awareness of ovarian cancer, to ensure that women know what to look out for and when to see their doctor—particularly those in higher risk categories, either because of family history or because of their age.

I am very pleased about the recent news for cancer patients in Northern Ireland: as is the case with genetic testing, it is unfair for patients to access different treatments, tests or drugs simply because of their postcode. I hope that the Minister will work with Public Health England and NICE to consider national campaigns, which take in all the regions, and screening programmes for ovarian cancer, as well as to ensure that guidelines are implemented and funding made available for testing.

I again thank the hon. Member for North East Derbyshire for the opportunity to speak on this subject. It is close to my heart; indeed, that can be said of all of us who are here and many who are not here because they are doing other things. Ovarian cancer is one of those diseases on which we need to give hope and support to the people affected. We all know people who are affected and we are here today to speak on their behalf.