MATTERS
MAR 28 - APR 3, 2013
HEALTH Editor: Bart Chan - Design: Thierry Lagrin The Voice supplement › page 19/20/29/30
PROSTATE CANCER
Black men still suffer worse outcomes INSIDE
› Rose Thompson talks p20 › Breast cancer hope p30
Rose Thompson (left) with Diane Abbott MP
20 | THE VOICE MARCH 28 - APRIL3, 2013
HEALTHMATTERS
Hear her now By Bart Chan
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RAGEDY CAN be a major setback for a person. Yet it may also become a catalyst to drive them to strive for something that did not seem possible before. Rose Thompson has certainly not allowed her loss of loved ones from cancer to diminish her ambition to bring about greater equality in cancer treatment for black and ethnic minority (BME) communities. The professional radiologist, who spent over 26 years in the NHS, knows her work in tackling BME access to cancer treatments and care is an “ongoing” fight. She began at a time, in 2009, when the struggle was only getting started, and now she sees her young social enterprise, BME Cancer Communities, as “punching above our weight.” Thompson, who lost her mother and twin sister to breast cancer, is currently directing her energy to helping men beat prostate cancer, hoping they initiate the fight by being diagnosed, or “captured” as she likes to call it, before aggressive forms of the cancer kick in.
MOTIVATED “Cancer for us is a relatively new thing, in comparison to the white community, and that really is because of the younger population,” the social enterprise director tells Health Matters. “With prostate cancer we’re entering into that age group where a lot of people are coming to or are over 50 and this is my generation.” Again, it is personal experience that partially motivated her to write the recently published report Hear Me Now, which explores the cancer and the challenges black men across the UK face when seeking help about the condition. “One of the things that prompted this is that we have had close friends we’ve lost to it, and they’re not elderly people,” says Thompson, who identifies as “unmet” the needs of BME men in getting the right treatment at the right time. The report, which contains a foreword written by David Lammy MP about prostate cancer, looks into why the most common cancer among men is revealing a stark difference between the outcomes of black and
Rose Thompson talks about her generation, her mission to combat cancer inequality and raise awareness about prostate cancer
AWARENESS DRIVE: Wayne Marston, left, Rose Thompson and David Lammy
white men. Black men in the UK are 30 per cent more likely to develop the cancer, and yet their death rate is “alarming,” Thompson says. In 2009, she conducted a project in Nottingham when the Primary Care Trust invited her to engage the city’s large African Caribbean population, and spread the message about prostate cancer. “I brought the information there and showed them the evidence,” Thompson says of her time working on six events over two months. “I expected there would be something targeted after that, but it didn’t happen. “What was alarming to me is that Nottingham has the second highest death rate of prostate cancer across the country, after Shropshire, which is a place with a lot of older men where you would expect death rates to be higher. “So I have to ask questions, and in that report we’ve got a high observation of black men in the West Midlands, Manchester, and we need something to be done by the local authorities in public health that is in true partnership with the community organisations.” The issue of raising awareness, the crucial weapon used to battle prostate cancer, is not just something Thompson reserves for the community; health professionals like doctors, GPs and nurses are also targeted by her. Furthermore, her work fills the gap of what the
NHS cannot sometimes do. “The NHS is quite stretched anyway, so often we pick up work when the nurses can’t get out. Sometimes it works well when you’re working with NHS professionals, sometimes it does not.” Despite her close work with cancers affecting only women, Thompson knows which strategies to employ when dealing with a cancer that only kills men. She takes men to events
early stages of prostate cancer,” Thompson explains of the survivor who speaks at the awareness raising events she organises. The cancer equality leader has also helped to establish a support group network for African Caribbean men in Nottingham called Friends and Bredrins. “We regularly get a good turn-out, because we are in touch with the community. “What is starting to happen here is that when one
So somewhere along the “line, something happens between diagnosis and death, that is actually a significant inequality
”
with stories of their own experience of prostate cancer. She mentions Wayne Marston, who is featured in the report. His father died two weeks after being diagnosed with the cancer; the son then learned he was in the early stages of the disease. BEGINNING “When 45, [Marston] had a slightly raised PSA test [result], and it triggered further examinations, even though he didn’t think he had any symptoms, he was in the
man tells another man, and when we tell them what their rights are, then we’re beginning to get more people diagnosed, so when they go to their doctors they talk about prostate cancer and it gets picked up,” she adds. It is no surprise that Thompson requires the skills of time management, for there are numerous plates she must keep spinning. And securing money to carry on is a vital one. “We’re steadily growing, we’re still quite young, but we’re punching above our
weight. If we could get more funding, obviously it would make quite a difference, and that’s the thing I have to focus on, as well as doing the cancer information and awareness raising.” In addition, Thompson has to work on the bigger picture, and not merely focus on regional and localised problems with access and awareness. Her goal is to connect the regional dots and create a national network of support groups for men dealing with prostate cancer. “For me, the BME work has only just begun,” she declares. “We are still getting stories from people in London who weren’t aware; our work is ongoing. DECISIONS “We cannot stop raising awareness, because even in America, where there has been a massive amount of prostate cancer awareness raising, they have captured a lot of people earlier, but still black men are two and a half times more likely to die than white men in America. “So somewhere along the line, something happens between diagnosis and death, that is actually a significant inequality. “Something is happening where decisions about treatment are being made, maybe choosing not to have treatment, like my mother – my mother was praying for divine healing.” Cultural competence is a term which Thompson has taken for her own by defin-
ing it differently to those looking into the BME community from the outside. “When people who are not BME focus on cultural competence, it’s often on what people believe, and culture is you do this when somebody dies. But for me, cultural competence is actually being aware of the fact that there is evidence that some ethnic groups are more likely to be affected by specific cancers. “The evidence has been out there for many years now. So when a doctor sees a BME patient, there should be a red flag that he needs to check. So cultural confidence is about being up-todate with up-to-date information.” Thompson’s report is a document she wants every GP to receive in order to help realise greater equality of access, and also refresh doctors of their duties. “I’d like more doctors to be aware of their training that early prostate cancer does not have signs and symptoms, and so it’s not appropriate if a man comes asking for prostate cancer, to say, ‘Have you got any signs or symptoms,’ and then make a decision as to whether they can go on to have checks based on signs and symptoms,” she says. INEQUALITIES “There is something called the prostate cancer risk management programme, and all we want is for doctors to follow that.” Continues on Page 29 ››
HEALTHMATTERS
MARCH 28 - APRIL3, 2013 THE VOICE | 29
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NURSES UNITE:Rose with Phillipa and Lucy from the British Association of Urology
The difference between black men and the rest of the general population is an aspect Thompson does not forget to highlight. “For some white men, they have very slow growing prostate cancers, they call them ‘pussycats’, but with black men, they’re more likely to have the aggressive type of prostate cancer – they call them ‘tigers.’ “For black men, we cannot take the statistics that have been done for white men. You cannot apply research done on white men and apply it to black men,” she adds, before emphasising one of her greatest challenges: the ethnic data collection gap. “It’s been a huge problem for years, it’s one of the greatest health inequalities, and not just for cancer,” Thompson says. Possessing the right data underpins the whole operation, for it provides the necessary evidence that must be exhibited to secure funding, and it further helps the patient make the best decision, she believes. “We have to give every patient an informed choice, and I think some of that choice may be taken away
from some men, in that men over 50 are entitled to go to their GP and ask questions about their prostate gland, but some men say they have difficulty in getting their GP to listen to them and to refer them on.” CHURCHES This is something that may be down to ageism, she says, adding that “anecdotal evidence does not seem to be matching” the portrayed picture that GPs are thoroughly helping BME patients explore every eventuality of prostate cancer and its diagnosis. “We need to catch it before there are symptoms, because many of our men by the time they’ve got symptoms it could be too late.” Hear Me Now concludes that despite the fact that campaigns have been waged to raise awareness; the follow-up action leaves a lot to be desired. “I’d like to see some funding going into churches and community organisations to work in collaboration with the experts, and people like us who know our communities, to change this,” she says. “I am concerned that GPs Continues on page 30 ››
Did you know the risk of stroke is higher if you are Black and of African or Caribbean origin? As the NHS launches its Act FAST Stroke Awareness Campaign, Jacqueline Anderson,
Stroke Association explains why the campaign is vital for our community. Q. What is a stroke? A stroke is a brain injury caused by a blockage or bleed in the brain. Since the brain controls and directs the rest of the body, the damage caused by a stroke can affect many of its functions, also the way we think, our ability to learn and how we feel and communicate. Despite being a treatable condition, stroke continues to be the third leading cause of death in England and the largest cause of adult disability. It does not need to be this way.
Q. Why is the risk of stroke higher in our community? A person’s risk of having a stroke is affected by age, family and medical history. There is a prevalence of diabetes and high blood pressure in our community, which are risk factors for stroke. So if there is a history of these conditions in your family, your chance of having a stroke is also higher. Additionally, lifestyle factors such as smoking, excessive drinking of alcohol, high salt intake, a diet high in fat, lack of exercise and being overweight or obese also play a big part. Q. How do you recognise the symptoms of stroke? The campaign explains that people should look for: FACIAL WEAKNESS Can the person smile? Has their mouth or eye drooped? ARM WEAKNESS Can the person raise both arms? SPEECH PROBLEMS Can the person speak clearly and understand what you say? TIME TO CALL 999.
Acting FAST as soon as stroke symptoms present themselves can not only save lives but potentially limit long-term effects.
Orville Dixon, stroke survivor from London.
Q. Any final words of advice Jacqueline? There are many things that you can do to improve your health and help reduce your risk of stroke. These include lifestyle changes such as giving up smoking, eating a diet low in fat and salt, taking regular exercise and cutting back on alcohol. However, in the event you or your loved one does experience a stroke, remember the FAST test.
“I was going to work one morning, I had a headache but thought it would go away. The pain became constant and got worse as time went by, it was such an intense, sharp pain. I also felt a tingling sensation down the side of my body and did not feel my usual self.
To find out more information about this campaign please go to: nhs.uk/actfast stroke.org.uk
CAct FAST Stroke Awareness
I have lived with diabetes for a long time and found out that this can be a contributing factor to stroke. After my stroke, my life changed dramatically, I was unable to walk and my speech was affected. However, over time my speech has improved and I can walk. I will be getting married this year! I urge everyone to seek medical advice and to let one another know if you are feeling unwell. Familiarise yourself with Act FAST, whether you are old or young. You could save someone’s life.”
30 | THE VOICE MARCH 28 - APRIL3, 2013
HEALTHMATTERS
New method of detecting aggressive breast cancer
SURVIVOR: Wayne Marston active campaigner
Prostrate cancer continued from page 29 are making judgements on out-of-date information. We cannot base decisions for patients based on old information. “I don’t want to be bashing communities and health professionals in the recession; everybody is overworked at the moment and it’s pretty tough in the hospitals.”
Scientists hope new development will help at the diagnosis stage By Bart Chan
the disease.
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7,500 WOMEN Their tests found that more than 50 per cent of the women sampled showed high levels of the MET biomarker, a protein which is integral to helping cells grow but becomes dysfunctional in cancerous cells. Furthermore, women who had a level of 33 per cent, compared to a lower level of 11 per cent, were three times more likely to suffer breast cancer reoccurrence in the following five years. Each year, 7,500 women are diagnosed with triple negative breast cancer, yet
RIPLE NEGATIVE breast cancer is more likely to mean a high level of a biomarker which makes the aggressive form of the cancer easier to target with drugs, a recently published report has said. The finding, published in the British Journal of Cancer, was made up by tests carried out by Austrian and Greek scientists who examined 170 tumour samples with triple negative breast cancer – a more aggressive, but less common form of
MODEL SUPPORTER (left): Leah Weller at a breast cancer event, X-RAY VISION (top): A doctor examines a breast scan AWARENESS RIBBON (bottom): Supporters gather in solidarity
their treatment is complicated due to it not containing the common receptors, like oestrogen that are targeted by standard treatments. “Our findings suggest that
with triple negative breast cancer,” said Professor Martin Filipits, the study’s author who works at the Medical University of Vienna. “This aggressive type of breast cancer is harder to
This aggressive type of “ breast cancer is harder to treat ”
levels of the MET biomarker in a patient’s breast tumour could be an important way of predicting the best type of treatment for women
treat as the tumours don’t have the receptors that the common drugs can target – blocking the growth of the tumour.
DYSFUNCTION Speaking directly to black men, Thompson says they must realise the gravity of their situation and how much more susceptible they are to the condition. “Black men do need to take the symptoms seriously. Some men don’t think their
“But knowing which women have high levels of this molecule in their breast tumours could help doctors to adapt the type of treatment they’re given. DIFFICULT “Levels of this biomarker could also give an idea of how likely the cancer is to come back,” he added. Dr Julie Sharp, senior science information manager at Cancer Research UK, said: “Triple negative breast cancer can be very difficult to treat but this interesting research could open up the possibility of new approaches to monitor and
symptoms are serious enough, but the whole point of early intervention is to catch it before it becomes serious,” says Thompson, before issuing a plea to the wives and partners who could be affected by the losses she went through. “I’m saying this to the women as well; you can make an appointment for your man. Particularly if he’s getting up and going to the toilet in the middle of the night, and, it’s one of the things people don’t realise, if he’s got erectile dysfunction.” Knowing full well the cost of when failure in healthcare access occurs, Thompson says: “I think this is all about saving lives. We have a window of opportunity to do that.”
treat this aggressive disease. “Last year a Cancer Research UK study found that even among patients with the same type of breast cancer, such as triple negative, no two women’s tumours will be exactly the same. What we call ‘breast cancer’ is in fact at least ten different diseases, each with its own molecular fingerprint, and each with different weak spots.” She added: “This is a challenge and we continue to support research that aims to identify these weak spots and develop better treatments for all types of breast cancer.”