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MATTERS

APRIL 19-25, 2012

HEALTH The Voice supplement › page 23 - 26

CANCER › SEXUAL HEALTH › HEART › OBESITY › STRESS › DEMENTIA...

FACING DOWN BOWEL CANCER

INSIDE: › Bowel cancer

A survivor’s account

› Black

Health Initiative

Leveling the playing field

› Diversity

in the NHS

Black staff held back


24 | THE VOICE APRIL 19-25, 2012

HEALTHMATTERS

Turning something negative into something positive BART CHAN talks with Margaret Samuels ‘I couldn’t write the word cancer,’ says Margaret Samuels. Instead while keeping a diary she wrote, ‘CC’, the best way she could express the condition she had been diagnosed with.

S

amuels, now 54, was told in November 2007 that she had bowel cancer, also called colon cancer. ‘I was quite shocked because I was well, I was still going to work as normal,’ she says, ‘it wasn’t anything my parents and my sisters have had, nobody in the family has had it.’ Bowel cancer is a prolific killer, according to the Department of Health, it is ‘England’s second most common cancer, with around 33,000 new cases each year’, and is ‘responsible for more than 13,000 deaths a year.’ Samuels was prompted into going to her GP after she collapsed to the floor while taking her daughter to a birthday party. ‘I was very anaemic and always feeling dizzy, I never kind of took it seriously, when I felt dizzy I would just sit down, you know, just plod on.’ Her stoic attitude meant she was perilously close to not detecting the cancer until it was too late. Ironically, at the time Samuels was working as a secretary in Leeds General Infirmary to a colorectal surgeon – she is coming up to having worked 26 years in healthcare. FAST GROWING After she had blood tests done, they found her haemoglobin count was ‘quite low,’ and that was not all; ‘They said basically I was a walking timebomb.’ The medication that was prescribed to her had zero effect on her blood levels, so they l o o ke d

inside her stomach to see if there was anything cancerous within, yet that proved negative. It was only after a colonoscopy that the medical staff discovered a polyp. Samuels says polyps are something that everyone has, ‘But some of them are cancerous and some you can live with.’ Unfortunately for her, the polyp was malignant; ‘They saw a very big one that was very fast growing. It was causing my blood levels to become very low.’ She was helped by her colleagues, the colorectal surgeon she worked for pre-booked all her radiology tests. Samuels is grateful, ‘It took the weight off me, all I had to do was basically go where I needed to go, and it was within the hospital where I worked anyway.’ Being treated in familiar surroundings helped her, as she knew what the procedures would entail, she even knew the surgeon who would operate on her. When it came to her surgery it was recommended that when under the knife she would have to have more than a laparoscopic procedure – keyhole s u r g e r y, because s o m e

things can be overlooked. That meant her surgeon ‘had to go through the old-fashioned route,’ she says, ‘and actually cut me and open me to look inside and check everything.’ UNDERSTAND What is such a daunting prospect, full of uncertainty, did not leave Samuels scared. ‘I think my faith played a big part in it as well. I’m a Christian, it helped in the fact that I wasn’t frightened, I just wanted to know what I had to do.’ Also, she was kept well informed, which aided her in staying positive. Her doctor even drew a diagram to show her how big her scar would be after surgery. Nevertheless, all the information in the world would not let her know the outcome, ‘At the end of the day, you just don’t know what the prognosis will be.’ Still under examination, this will be Samuels’ last year of check ups to ascertain how effective her treatment has been. She has had to make significant changes to her lifestyle since the cancer was removed. She tells how she has a ‘very small bowel, because they had to cut the cancerous part away and that meant taking most of my bowel away.’ The surgeons tied the two ends of her colon together, ‘It is difficult, and you really do get to understand why we have a colon, it makes you understand how it all works.’ Her diet has had to be reconciled with her smaller bowel, ‘My eating is very, very different to how it was and some things react to me in a different way, and I’ve had to eliminate things, so it’s really trial and error with what I eat.’ It now takes her longer to digest food, and she finds dairy products and vegetables difficult to eat; it can get aggravating at times, yet Samuels says, ‘These are the symptoms of hav-

STRENGTH IN FAITH: Religion helped Margaret Samuels in her battle against cancer

ing a small bowel, and I do get quite a lot of constipation.’ Despite the daily struggles her condition has thrown at her, she refuses to let them get her down. Again, she talks of how her faith has given her inner strength, ‘It’s helped me through because instead of asking the question, ‘why me?’ The way I look at it is, this has happened to me, how am I actually going to deal with this, I look at it as a challenge in my life and an obstacle which I have to deal with. ‘We all have obstacles in life, and on the journey we have to take we don’t know what is around the bend, and around my bend is this bowel cancer. I’ve had to pray about this and know there’s something in this and I’m going to see some light at the end of tunnel. And that’s how I’ve had to look at it, that it isn’t anything I need to be scared of.’ JOURNEY

“Mum,

are you going to die?”

Samuels takes a somewhat philosophical stance when discussing life and what it means to experience its ups and downs; she knows the difficult parts should not be suffered alone, ‘We don’t know what’s going to hit us on this journey, but it’s something we are going to have to share with others to get through it.’ Her religion, she is a member of New Testament Church of God, has not been her only source of support. The Black Health Initiative (BHI) has also provided a platform which has enabled her to remain strong. She discovered BHI through a friend and thinks it is a good organisation, ‘Because what you find is that a lot of black people don’t talk openly about cancer. BHI felt like a place where I could open up and just talk about it like you would in everyday conversation.’ Additionally, attending BHI meetings gave Samuels a chance to learn about other cancers, and inform others of her own experiences. She says once she felt she knew enough about her own body and the cancer, she left it up to the Lord to decide her fate, ‘I definitely needed to be very positive, which is what I was and I’m happy about that.’ Her daughter was 10 yearsold when Samuels was diagnosed, she admits she did not tell her straight away about her condition, ‘I just said to her I wasn’t very well and needed to have an operation quite soon. ‘Once I had gotten over the operation and was in a better frame of mind in the sense that I wanted to understand and get it all in my head, so that when I

was explaining it to my daughter I wasn’t going to stumble over anything, and make sure I had some answers for whatever questions she would ask me.’ One of the first things her daughter asked her was, ‘Mum, are you going to die?’ Samuels replied to her, ‘We’re not here forever anyway, but I said I don’t know the answer to that question.’ SURGERY Samuels took a year off work, but it was not long before she found herself missing it. ‘I needed to be back at work because I wanted some kind of routine again in my life.’ Yet it was difficult for her going back to the place she had been diagnosed and treated for bowel cancer. Therefore, she was redeployed to Saint James’ Hospital and works in occupational health, a post recommended because it is in no way related to cancer. After her surgery she had one particular difficulty, ‘What I found very hard was to actually look at my scar.’ That was my main problem, I found it really hard, it was a constant reminder.’ However, she has now gotten over the mark of her surgery, the scar has faded, and she in fact ‘feeling very well.’ It is apparent how much her volunteer work with BHI motivates and keeps her busy. ‘I like things which make a difference,’ she says, ‘I feel that my calling is to be hands-on with people, because I’m very much a people’s person. POSITIVE ‘I want to let people know they shouldn’t be frightened about certain things you get, it’s all part of our journey, and we’re here on this earth, I believe, to help each other in which ever way we can. Just a few words to somebody can make a difference.’ Samuels advises anyone going through cancer has to look on the bright side. ‘What I would say is that it isn’t all a negative ending, it’s about thinking positive, you’ve got to have a very positive mental attitude, I honestly believe in that, because that will keep you going. And think to yourself, how are you going to deal with this to help others.’ Her battle with bowel cancer has changed over the years, her faith, family, friends, colleagues and BHI making a difference. It is now two years since Samuels went back to her diary and crossed out those ‘CCs’, changing them to colon cancer, the illness she has bravely fought and conquered.


HEALTHMATTERS

Campaigning for a healthier, more equal society service provision in regards to health within disadvantaged and marginalised groups,’ explains here are not many Nelson. ‘We give factual infororganisations that mation to those communities, so would like to see the they can make informed health day when they are no choices, and strategically, we longer needed, howev- sit around the table with policy er you could argue Black Health makers and strategic planners in Initiative (BHI) is working to- regards to the services and how ward a future where it would we can make them more accesbecome obsolete. Not that that sible and equal.’ It is a ‘two-fold’ will happen anytime soon, says operation, the organisation has Heather Nelson, Director of BHI to concentrate on both operational and strategic planning, since 2008. ‘The reason why BHI exists is meaning Nelson’s schedule is because there is inequality of ac- often full. Newspaper advert:Layout 11:26in 1988 Page BHI was established cess to services [and] BHI is set 1 02/04/2012 up to look at the inequalities of in Leeds under the original name By Bart Chan

T

H ng L C U erni Gov ody B

FRESH DIRECTION: Heather Nelson, Director of BHI, has put emotional health at the top of their agenda Black Communities Aids Team (BCAT); its primary mandate was to raise awareness about HIV in African and Caribbean communities. Yet over the last two decades its mission has expanded and diversified, a change reflected in its renaming to BHI in 2008, which coincided with Nelson’s new leadership and her desire to move in different directions. DISPROPORTIONATE BHI’s director saw her arrival in 2008 as a chance to implement her vision, ‘We refocused 1on emotional health and wellbeing.’ She oversaw the renam-

ing of the organisation because it no longer adequately expressed its mission, plus ‘there are certain stigmas attached to HIV.’ Nelson believes the changes have made BHI more accessible to the black community. When Nelson talks of emotional health and well-being, mental health is what she has in mind. ‘We’re looking at the disproportionate rate of mental health issues within the black community, especially amongst black men. So we work closely with those suffering various mental health illnesses, but also the mental health providers.’ Why is there a disproportion-

APRIL 19-25, 2012 THE VOICE | 25

ate rate of mental illness among black men? There is not one simple explanation according to Nelson. ‘I think there could be a number of reasons, but it could be the fact that a lot of our black men are disenfranchised from the economic development of their communities or the city in which they live. They may be disengaged, and this is a generalisation, from the family unit, the single parent family household is usually led by women, and so it’s like, where exactly do the black men fit in. ‘They may be taking up certain activities that don’t enhance their emotional well-being, so it might be smoking certain substances or substance misuse, alcohol as well is something else that’s on the high uptake in our communities, especially young black men, which doesn’t help in later life. So there are a number of factors. Also, we’re heavily medicated, so if we show signs of mild depression and present ourselves to GPs, then we’re more likely to be heavily medicated than our white counterparts.’ Nelson believes there are still cultural differences between the black community and the rest of the population, particularly the older black generation,

which may explain why there is a lingering inequality of access to health services. This is where BHI steps in, says Nelson, ‘We are arming people with the facts when they see the doctor and making them more informed.’ POPULATION Nonetheless, the younger generations are a lot different to the old, in the sense they have grown up and lived in the UK all their lives, hence Nelson does see that ‘it is merging into one culture more or less.’ Despite the growing similarities, inequality of access remains an issue, which is epitomised by the disparity in mental health issues between the black community and white population. This year BHI has launched a new mental health initiative, which ‘will take a holistic approach,’ says Nelson. This emotional welfare drive aims not to incorporate the runof-the-mill practices, but other less usual treatments, says Nelson, ‘As in complementary therapies to encourage people to just take time out for themselves. You know, look good, feel good, that kind of thing. ‘We do aromatherapy, reflexology, ear candle therapies, head CONTINUED ON PAGE 26

Elections 2012

Interested in UCLH NHS Foundation Trust and care about the decisions made? Why not stand for Governor?

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Are you our next Governor?

We are seeking enthusiastic and dynamic people to join our Governing Body. Governors have an important role and represent the views of patients and the public. There are 5 seats for election this year: - 1 public - 3 London-based patients - 1 Non-London based patients Nominations open 8 May and close 6 June 2012 at 5pm All our members* can stand - it’s a simple self nomination process. Why not come to the election event on Thursday 10 May at 6 - 8.00pm. Hear a presentation from the Chairman and find out more about the role. To book your place see below. Not a member of the Trust? If you’re a patient, an unpaid carer of a UCLH patient or a London resident apply online today at www.uclh.nhs.uk/members or contact Ros Waring for further information, or to book your place - email foundation.trust@uclh.nhs.uk or call *aged 18 or over 020 3447 9290


HEALTHMATTERS

26 | THE VOICE APRIL 19-25, 2012

CONTINUED FROM PAGE 25

massages, that kind of stuff.’ One alternative treatment that is not on offer is acupuncture, ‘We don’t do acupuncture, and the reason for that is the various taboos some of our community members hold, but we do reiki.’ Nelson says taboos and old cultural beliefs can be an obstacle in some areas, the taboo surrounding acupuncture, she says, is ‘to be punching holes in yourself could spiritually cause imbalances.’ And it is these misconceptions which BHI aims to dispel, states Nelson, ‘What we do is look at the myths and taboos and see how we can change those kind of perceptions, because it’s the same thing we have with the cancer work, people wouldn’t speak about cancer because of the various myths and taboos, some people even thought if you spoke about it you’d get it, if you stood next to somebody you’d get it. It’s about educating our community members about these cultural myths.’ Nelson has spent her entire professional life doing this kind of work, before BHI ‘I worked for a community empowerment organisation, for the last 25 years I’ve been in the voluntary sector, looking at marginalised and dis-

advantaged groups.’ She says she was drawn into the field because of how she grew up; ‘I think it was having people around me going through various illnesses and presenting to GPs and being told the symptoms were in their mind, and not being processed if they were part of the indigenous population.’ BHI uses real-life people to help shape policy, an aspect Nelson is proud to highlight.

“Real people

who are going through real-life issues

‘Because BME communities are not very forthcoming in identifying themselves when going through certain issues or traumas, what we try to do actually is present real people who are going through real-life issues rather than using models.’ This something they do when working with other organisations, such as service providers and the government. Their work can only be done if they secure the right funding, and to do that they have to

demonstrate they are providing evidence to policy-makers that would otherwise be missed. It is difficult work, especially when it often goes unnoticed, ‘The work organisations like ourselves do is usually unrecognised until statuary bodies realise they have to utilise our expertise to reach the right community members or ones they deem hard to reach.’ With new campaigns to launch and numerous people to inform, Nelson remains adamant about the importance of BHI’s work, and she knows what she is working toward, ‘If there were more collaborative, equal partnerships we would have equality of service and access for all disadvantaged and marginalised groups.’ She also knows significant change is still required and who is best equipped to make it happen, ‘There is cultural awareness, but I do not believe there is true cultural competence out there, and to think that one size fits all is giving people a disservice. True innovative community engagement is what is needed and the people who work within those communities are those who know how to engage with those communities.’ It certainly seems like Nelson and BHI will be sticking around for a while.

NHS: Too few black managers NEW BOOK There are not enough black leaders in the NHS, with too many obstacles in their path, according to Modern Matron

EXPERIENCED: Shirley BaahMensah has written a book on her years in the NHS By Lizabeth Davis

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reaking the glass ceiling in the care profession for black, asian and minority ethnic staff (BAME) is Shirley Baah-Mensah’s lifelong mission. Baah-Mensah, a National Heath Service (NHS) modern matron, says that a large number of BAME staff only make it a few steps up the career ladder before they come to a halt. Hoping to change this, Ghanaian born Baah-Mensah penned a book about her experience working in the care profession. Her book offers advice on how BAMEs can overcome obstacles to progress to more senior positions. “There is an issue where BAMEs are not found in leadership roles in the NHS as a whole,” Baah-Mensah, said. PROMOTION

With 25 years experience under her belt working in one of London’s NHS Foundation Trusts, Baah-Mensah was constantly bombarded with requests for mentoring. So much so, she decided to share her pearls of wisdom through her book titled, No More Casualties. Although there have been a number of initiatives to strengthen diversity recent statistics show that the number of BAME NHS staff in management positions are still dispro-

portionate when compared with their white counterparts. NHS statistics from September 2011 show that 2,216 of black and asian non-medical staff were in manager and senior manager positions compared with 33,513 white staff. This is from a total number of 890,108 white staff and a significantly higher combined total of 114,923 black and asian staff. For this reason Baah-Mensah said that there needs to be more BAMEs at the decision-making table but said that racism is holding them back. “It is well documented that there is institutional racism not just in NHS but across the public health sector.” However, Baah-Mensah said BAME staff shouldn’t let this impede their progress, instead they should be asking: “How do we bypass this? How do we override this? How do we progress in spite of the racism that exists?” EQUALITY The 49-year-old who lives in Essex with her husband and two children said her book published in August 2011 is “a call to action.” She says that not only is it important for BAME staff to hold management roles for reasons of equality but it is also important for understanding the health issues that affect BAME people like sickle cell and mental health. “It makes good business sense to have black and minority ethnic in the board rooms in decision making, with commissioners. Not just to help ourselves but for providing the right service for BAME people. DECISIONS “Their voices are not being heard. How can we develop proper sickle cell services if there are no BAME staff making decisions anywhere along the chain? It’s not going to work,” she says. Now, Baah-Mensah runs coaching workshops in her spare time to help those who want additional support. “BAMEs come with the same issues over and over again [say-

ing]I want to go for this job, can you coach me? Am I good enough? So I thought what can I do to help?” “Some of these people haven’t got confidence and they don’t know how to package themselves, to sell themselves to get that promotion and they are being passed by. So this is my way of helping,” she says. No More Casualties is available from Amazon and Waterstones.

SHIRLEY’S TOP FIVE TIPS FOR SUCCESS 1. Coaching & mentoring – Have someone regularly checking that you are making progress and to give advice when you are faced with obstacles. 2. Confidence building – Find ways to boost a lack of confidence. 3. Political awareness- Find out who the decision makers in the organisation are. 4. Networking – Network to find people who have progressed in the field and learn from them. 5. Career planning & personal goal setting – have a structured career plan, set yourself goals and be sure to stick to them.

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