Health Equalities Issue 1

Issue 1 April 2012 £4.00

the route to integration – groundbreaking work with Roma male sexual abuse – survivors speak out Lenny Henry on sickle cell, screening and dads health and human rights – the status of human rights in the UK

Also inside this issue of Health Equalities: Hidden in plain sight Disability-related harassment and the public authorities’ actions aimed at tackling it

Trans people and healthcare What do health and social care providers need to know to best meet their diverse needs?

Testing times?

National AIDS Trust looks at the barriers to testing in African communities

features

Health Equalities is a twice-yearly magazine which focuses on tackling health inequalities.

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Editor’s letter Welcome to this first, trial edition of Health Equalities. It is being produced by BHA, the North West based health equality charity. We provide support to people living with HIV, affected by Hepatitis C, and in new communities who need support to access services and to groups still struggling to get heard by the NHS or social care.

We want to widen and deepen the discussions we’ve been having about how to tackle the many barriers faced by the different communities we work with, and recognise that there are communities, groups and individuals facing unseen and complex discrimination and disadvantage.

So, why Health Equalities?

Equality, rather than inequality, because we want to share and promote best practice. The ‘s’, because we want to help diverse communities learn from each other and recognize the many strands we need to weave together if we are to confront inequalities.

Three articles in this edition point out the huge risk of treating groups as ‘marginal’ – the spread of Hepatitis C, that 1 in 20 Africans living in the UK have contracted HIV and increasing rates of TB. If these infections are seen only as an issue for injecting drug users, or for Africans or other BME people born outside the UK the risk of their far wider spread increases. The reports show that by concentrating on the specific needs of groups most at risk we can reduce potential harm and improve health for all.

There is a lot more in this trial issue, focusing on groups who are seldom heard and on over-arching issues about the right to health and the kind of health system we want to nurture.

We hope you not only enjoy the magazine but also tell us what you think about it, how we could improve it, how you could help or contribute articles.

Nik Barstow, BHA contact: nik@theBHA.org.uk ps: We aren’t expecting to make a profit from this magazine, it’s our contribution to discussion and working together but any financial support would be welcome.

Contents

Contributors Colin Tyrie - Senior Public Health Development Advisor, Manchester Mental Health and Social Care Trust

Testing Times?

1 in 20 Africans living in the UK have contracted HIV. NAT (National AIDS Trust) has been looking at the barriers to testing in these communities and what policymakers are doing to remove them.

Page 24 The importance of health equality Page 4 Lost in Translation English NHS ‘reform’ and the fate of the public interest Page 5 Lenny Henry on sickle cell, screening and dads Page 6 Hidden in plain sight Disabilityrelated harassment and the public authorities’ actions aimed at tackling it Page 8 Men as victims of sexual abuse and rape Page 11 The route to integration A look at how we can support East European migrants to integrate into the city of Manchester.

Page 14

Dave Gort, Communications Lead of the Disability Harassment Inquiry for the Equality and Human Rights Commission David J Hunter, Professor of Health Policy & Management, School of Medicine & Health, Wolfson Research Institute, Durham University

Trans people and healthcare What do health and social care providers need to know to best meet their diverse needs? Page 18 Health and Human Rights The status of human rights in the UK Page 20 Hepatitis C The hidden epidemic Page 27

Duncan Craig, Founder and Service Director of Survivors Manchester.

Eleanor Briggs, NAT, the UK’s leading charity dedicated to transforming society’s response to HIV. Ellie Keen, Health and Human Rights Officer at the British Institute of Human Rights Gareth H Williams, Professor of Sociology, Cardiff Institute of Society and Health, School of Social Sciences, Cardiff University Helen Clifton , Manchester-based freelance journalist.

Cancer and BME communities Page 31

Jez Buffin,Principal Lecturer, School of Social Work, University of Central Lancashire

TB in ethnic minorities Page 34

Lenny Henry

The first time I met Joe, I was really moved by the brave way he was facing severe disability. Yet had he been diagnosed in time, no damage to the spinal cord would have happened.

SpeakOut! Giving marginalised and disadvantaged groups a voice Page 36 Research reviews by the Health Equality Library Portal Page 38

Dr Louis Bailey, consultant for the Trans Resource and Empowerment Centre Peter Davies, Secretary of TB Alert and a former Consultant Chest Physician at Liverpool NHS Trust Rose Thompson, Director BME cancer.communities Shahnaz Ali, Director of Equality, Inclusion and Human Rights at NHS North West NHS Northwest Health Equality Library Portal

To submit an article to the editors: info@theBHA.org.uk

Opinion

the importance of health equality

The biggest health inequality of all is, of course, life expectancy and it remains an affront to all of us, as citizens of a wealthy, modern democracy, that your life chances can vary so widely because of where you happen to be born, or live.

Although overall Britons are living longer, according to government figures published in June 2011, there is a growing North-South divide, with people in the South enjoying a longer life expectancy.

In the south, 65.59 people per 100,000 die of heart disease, while in the North the figures rise to 93.72 people per 100,000. In the North West we have the second highest rate of hospital admissions for alcoholrelated harm in England, and 4

the rate is rising faster than in other regions. Incapacity benefit claims for mental illness in our region are also the highest in the country.

As well as geographical inequalities, there are also disparities between certain groups and communities, regardless of geography.

Disabled people, older people, BME communities and LGBT people all experience barriers to public services arising from

Disabled people, older people, BME communities, LGBT people all experience barriers to public services arising from discrimination, prejudice, lack of cultural competence and a ‘one size fits all’ approach

discrimination, prejudice, lack of cultural competence and a ‘one size fits all’ approach.

We know that South Asians are 50% more likely to die of heart disease than any other group of people anywhere in the world. Men are less likely to report health conditions than women, leading to worse implications for their health.

Infant mortality is higher than average among Black Caribbean and Pakistani groups. Muslim people tend to report worse health than average. Women report higher incidences of mental health conditions.

That’s why, in 2008, NHS North West launched a fiveyear plan – Narrowing The Gaps – to help the NHS across the North West tackle these health inequalities, focusing on measurable outcomes. (To find out how the NHS in your local area is doing, please visit www. eds.northwest.nhs.uk ).

Our ambition is not just that people live longer, but that they have a better quality of life too. Tackling the inequalities between different groups is the first essential step to better health for all.

Shahnaz Ali is Director of Equality, Inclusion and Human Rights at NHS North West, the strategic health authority www.help.northwest. nhs.uk

Further reading Judt, T. Ill fares the land. London: Penguin Books, 2010.

Sandel, M. Justice: What’s the right thing to do? London: Penguin Books, 2010.

Office of Health Economics. Report of the OHE Commission on competition in the NHS. London: Office of Health Economics, 2012.

Lost in Translation: English NHS ‘reform’ and the fate of the public interest With the NHS and Social Care Bill having received the Royal Assent and become law we should be more concerned than ever about the underlying forces pushing the NHS in England away from its founding principles and concerns. We argue that the debate over the fate of the NHS in England, triggered by the government’s determination to replace a largely publicly provided service with an increasingly privatised one driven by competition, is a microcosm of the wider conflict between the welfare state and the market state that is a defining feature of public policy in the 21st century.

During the protracted and heated debate over the Bill, the Secretary of State for Health asserted that ‘individual creativity and innovation is best supported by competition’ [which] ‘is a critical element of healthcare system reform’. This shift from public to private provision lies at the heart of the new Act. What is striking about the Secretary of State’s position is the extent to which market competition rather than public provision has become the driving principle of health care reform in England, a move started under the last Labour government.

Recent research claiming that competition is effective under particular conditions has been defended on the grounds that the studies are empirically based in contrast to the critiques of competition which are dismissed as being rooted in ideology and polemic. Whichever side one takes in the clash between competition and markets on the one hand

Pollock, A., Macfarlane, A., Kirkwood, G., Majeed, F.A., Greener, I., et al No evidence that patient choice in the NHS saves lives, The Lancet 378, 2011: 2057-60.

Bevan, A. In Place of Fear. London: Quartet Books, 1978.

Brindley, M. Public needs to take more responsibility for their health – Commission, Western Mail, June 23 2011, http://www.walesonline.co.uk/ news/wales-news/2011/06/13/public-needsto-take-more-responsibility-for-their-healthcommission-91466-28866868/

and the public provision of services on the other, the evidence base is never likely to be so unequivocal or uncontested as to enable the argument over whether competition is an unalloyed good to be settled one way or the other. At best, policy can be evidence informed but not evidence based.

In any event, issues of efficiency, productivity and throughput are not the only ones to be considered, valued or protected in a public health system, even one which performs as well as the NHS does when compared with other systems.

Surely matters of ownership, governance and accountability, in the public interest, matter greatly in complex systems where a high degree of integration, connectivity, collaboration and relationship management is critical. How can the public interest be preserved and strengthened if the means of delivering a health system no longer lie in public hands? As the recent debacle over the Care Quality Commission demonstrates, regulation is an ineffective instrument in managing and avoiding the problems to which competition can give rise.

Governments are invariably poor regulators having divested themselves of the necessary in-house expertise and specialist knowledge.

The architect of the NHS, Aneurin Bevan, proclaimed it to be ‘a triumphant example of the superiority of collective action and public initiative applied to a segment of society where commercial principles are seen at their worst’. More recently, the moral limits to markets in areas of public policy such

as health care have been questioned. If we believe that ‘marketising social practices may corrupt or degrade the norms that define them, we need to ask what non-market norms we want to protect from market intrusion’. The absence of such a discussion of the NHS reforms in England is in striking contrast to the position in Wales where the health minister, Lesley Griffiths, in response to a report by the Bevan Commission, has pointed out that: ‘...unlike the NHS in England, our NHS is avoiding the marketplace and competition in favour of an integrated system, where the assets of the health service are owned by its government and its people’.

Rescuing the debate about the kind of health system we want to nurture and sustain means removing it from the simplistic market-based nostrums of economists. It demands a renewed faith in politics and civic engagement for, as long as a situation prevails that has been described as ‘the unbearable lightness of politics’, we risk losing respect for public goods and paving the way for their privatisation.

David J Hunter, Professor of Health Policy & Management, School of Medicine & Health, Wolfson Research Institute, Durham University Gareth H Williams, Professor of Sociology, Cardiff Institute of Society and Health, School of Social Sciences, Cardiff University 5

Opinion

Lenny Henry on sickle cell, screening and dads You’ve been involved with the Sickle Cell Society since the 1980s – tell us how you got involved?

“The Sickle Cell Society approached me to become a friend and I immediately took the offer up - an absolutely essential cause.

Garth Crooks introduced me to OSCAR (Organisation for Sickle Cell Anaemia Relief) where I also became a patron. I remember narrating a film called “Let’s talk sickle” and really being moved.

You recently got tested yourself. Can you understand why people get nervous?

Yes, but no need for nerves. When I got tested I received very useful counselling from Collis Rochester Peart, the counsellor in South London. She explained to me that sickle cell and thalassaemia are inherited blood disorders which affect the red blood cells in the body. I think the public can sometimes get confused about what it means to carry the gene for sickle cell or thalassaemia as opposed to actually having the disease. It’s great to see that health care professionals understand this better now and I am pleased that there is more literature around to support education around these two very important conditions.

I tell you what, if you are nervous - get yourself tested, then go and eat rice, chicken, and dumplings to celebrate!

What do you think are the difficulties in getting the message out?

The last ten years could not have been easy, 6

especially with the issue of diversity. On the one hand, there is an acknowledgement that sickle cell and thalassaemia do disproportionately affect black, Asian and minority ethnic communities. These communities need to own the issue and understand what the choices and options are. To my mind, working with the voluntary sector is a very smart move in achieving this and I am sure the public outreach work which is going on in the barber shops, schools, churches and support groups will pay off. On the other hand, the Screening Programme also sees that these are not simply black issues. Sickle cell and thalassaemia can affect anyone and you cannot tell whether someone is completely “at risk” from their skin colour or name. In today’s multicultural Britain, we need to embrace sickle cell and thalassaemia as mainstream issues.

You’ve mentioned the importance of men understanding about these conditions.

Yes I have. It is so important. The Screening Programme’s figures show that only 50% of men actually take up the offer of getting screened as part of the antenatal service.

Now I don’t think this is because they don’t care. I reckon it is because many of these men may be misinformed about what their role is in their children inheriting sickle cell or thalassaemia. You’ve also got the other issue of men not being informed in time about the opportunity to be screened in early pregnancy, and giving them enough time to digest all genetic information which could

potentially affect their developing child.

It’s really encouraging to see that the Screening Programme is producing a leaflet specifically targeted at men because let’s face it, antenatal services don’t feel particularly manly. If men can read something which speaks specifically to them this can only be a good thing.

Have you approached Beyonce about campaigning on your behalf? A picture of her is bound to get those men’s numbers up....”

Article reproduced with kind permission from the NHS Sickle Cell and Thalassaemia Screening Programmes’ magazine“, Circulate”. For more information on the Programme and the “Tests for Dads” leaflet see their website: http://sct.screening.nhs.uk

I tell you what, if you are nervous – get yourself tested, then go and eat rice, chicken, and dumplings to celebrate!

7

Focus on disability

Hidden in plain sight On the International Day of Disabled People, the Equality and Human Rights Commission announced it was launching a formal inquiry into disability-related harassment and public authorities’ actions aimed at tackling it. Dave Gort, Communications Lead of the Disability Harassment Inquiry for the Commission, looks at the progress made and what can still be done Intelligence gathered through their previous research (Promoting the Safety and Security of Disabled People), helpline, and stakeholder networks convinced the Equality and Human Rights Commission that disability-related harassment was a serious problem that needed to be better understood.

On the 3 December 2009 - the International Day of Disabled People - the Commission announced it was launching a formal inquiry into disability-related harassment and public authorities’ actions aimed at tackling it.

Last September, the Commission published the Inquiry’s findings in its report: ‘Hidden in plain sight’. The Inquiry found that harassment aggravated by disability has become increasingly commonplace.

Reported incidents included verbal and physical abuse, theft and fraud, sexual harassment and assault and bullying.

Worse still, the report reveals that many disabled people have come to accept ongoing harassment as inevitable - a constant drip, drip, drip of the so-called ‘low-level’ harassment that many disabled people face on a daily basis. It ruins their lives. They don’t have the confidence to go out. It undermines their ability to be part of society. It makes them behave differently.

Reporting Disabled people often do not report harassment, for a number of reasons: it may 8

be unclear who to report it to; they may fear the consequences of reporting; or they may fear that the police or other authorities will not believe them. Indeed, the Commission found that a culture of disbelief exists around this issue. Even when it is reported or uncovered it is often not recognised for what it is. For this reason, they describe it as a problem which is ‘hidden in plain sight’.

Systemic failure The report found systemic failure by public authorities to recognise both the extent of harassment and the impact it has on disabled people.

Health agencies often focus only on symptoms - injuries, depression and anxiety - rather than causes of harassment - but they have a crucial role to play in dealing with the impact of harassment and supporting victims. For example, health professionals (ambulance crews, GPs, nurses) can be the first or in many cases, the only contact a disabled person has with a public authority, but the Inquiry found low levels of safeguarding referrals from all agencies, including health agencies.

Multi-identity issues The Commission’s previous research: ‘Promoting the safety and security of disabled people’ found that disabled people

may be targeted because of more than one aspect of their identity, or in some cases, several aspects.

The Inquiry team explored how public authorities respond to victims with multiple “protected characteristics”. They found little understanding of how a victim may be targeted as a result of more than one aspect of their identity and how to meet the needs of diverse victims. For example, rape and sexual assault against disabled women tended to be dealt with only as a ‘violence against women’ issue rather than potentially both a violence against women and a disability-related harassment issue.

The Commission’s targeted violence work across strands found that agencies tend to work in “silos” when responding to people with multiple protected characteristics, focusing on just one aspect of that individual’s identity. When the Metropolitan police re-analysed its data on victims of racist and homophobic hate crime, they found that a disproportionate number of them were also disabled.

Some people told the Inquiry they felt that they could be at a “double disadvantage”; in their own community based on their disability, and in wider society based on their disability and/or other characteristics such as race.

More research is needed into hostility based on multiple identity. This will help ensure authorities tackle the issues faced by those people with significantly greater chances of multiple harassment effectively.

Judy Greenway www.flickr.com/photos/ judygr

Safeguarding The Inquiry found that healthcare agencies missed opportunities to intervene in a number of particularly grave cases it reviewed.

The case of Christopher Foulkes, analysed in the report, highlights one such example of a missed opportunity. Christopher, a 39 year old man with a physical impairment and a mental health issue, was found dead in his flat in Rhyl in 2007. Police initially thought Christopher had fallen and had assessed the death as non-suspicious. It later emerged he had died following an assault by a 15-yearold boy whom he had previously accused of stealing from him.

Christopher had been in contact with the council’s social services department for several years as a result of his long history of drug and alcohol abuse. On a number

of occasions he was offered a residential placement which he chose not to accept. In August 2006 he was identified as being at risk of self-neglect, at risk due to physical impairment and at risk of falls. But because he was considered to have mental capacity, a referral to the protection of vulnerable adults team was considered to be inappropriate.

Safeguarding referral rates from health agencies are also a cause for concern, varying across Britain from 18 per cent in England to 14.5 per cent in Wales to 4 per cent in Scotland.

Language The language used to label disabled people can hamper efforts by healthcare providers to identify those they need to support.

Speaking at an Inquiry hearing, Sean Gallagher, Director, Social Care Policy,

Department of Health, said: ‘I think most people would say there is dissatisfaction with the terminology about vulnerable adults because, as you say, people aren’t inherently able to be labelled as “vulnerable” or “not vulnerable”, and you’re not able to draw a neat line about this category of person.

‘People can be in a situation of vulnerability according to the position they’re in; they all differ according to time.’

The Commission has welcomed the Department of Health’s and British Medical Association’s guidance to help doctors protect adults at risk of harm. The guidance requires doctors to take action if they believe adults at risk of harm are being abused or neglected.

However, they view the term ‘vulnerable adults’ in the guidance unhelpful in tackling wider attitudinal barriers that many disabled people face, and suggest a change to ‘adults 9

‘Five youths jostled my chair and laughing at me, called me a n***er in a wheelchair. I felt scared, shocked and deeply humiliated. Call the Police? It never occurred to me. What would they do?’

(Quoted in submission to the Inquiry by Metropolitan Police Authority (MPA), from a report commissioned

by MPA, Disabled People and the Police: A New Relationship)

at risk of harm’.

For example, the Terms of Reference for the serious case review into the death of Michael Gilbert, who was murdered by a family who had tortured him for years and kept him as a domestic slave included: ‘All agencies to scrutinise their own and other organisations’ definition of “vulnerable adult” and analyse the impact in this case. Additionally an analysis should be undertaken of eligibility criteria relating to services and access to support.’

At the hearing examining this case, agencies suggested that the definition was too narrow and had hindered their ability to protect Michael from escalating violence.

The recent review of the ‘No Secrets’ Guidance by the Law Commission also recommends a move away from using the term ’vulnerable’ when referring to disabled people and replacing it with ‘adults at risk.’

Partnership work The report identifies examples of good cross-agency working – particularly in areas that have proactively begun to change following a serious case review. In Cornwall for example, following the death of Steven Hoskin in 2006, agencies said the involvement of very senior health champions in partnership with other authorities formed a key part of their response.

However, the Inquiry also found examples of ineffective partnership working including: • Appropriate referrals not made between agencies. This included not referring adults at risk of harm to adult safeguarding, and adult safeguarding teams not referring criminal allegations to the police.

• Poor data gathering and information sharing across agencies.

• A lack of recognition of the role of disabled people’s organisations in responding to harassment 10

Seven core recommendations

In its report, the Commission outlines seven areas in which it says improvements will demonstrate that society is achieving real progress in tackling harassment when: 1. There is real ownership of the issue in organisations critical to dealing with harassment.

2. Definitive data is available which sets out the scale, severity and nature of disability harassment and enables better performance monitoring for those responsible for dealing with it.

3. The Criminal Justice System is more accessible and responsive to victims and disabled people and provides effective support to them.

6. Promising approaches to preventing and responding to harassment and support systems for those who need them have been evaluated and shared.

7. All frontline staff who may be required to recognise and respond to issues of disability-related harassment have received effective guidance and training.

The Commission is finalising its recommendations in conjunction with the sectors prior to publishing the Manifesto for Change in July 2012. But everyone should be aware that disabilityrelated harassment is predominantly a social problem and one that, in the final analysis, also requires an individual response and commitment to change.

4. There is a better understanding of the motivations and circumstances of perpetrators and are able to prevent it happening.

5. The wider community has a more positive attitude towards disabled people and better understands the problem.

To read the report in full or to download the healthcare briefing, visit: www. equalityhumanrights.com/dhfi

Focus on abuse

Men as victims of sexual abuse and rape 1 in 6 males are victims of sexual abuse but only a few speak out.

The majority of boys and men find maladaptive and unhealthy coping mechanisms, but does anyone know what the cost of ignoring the issue is? Duncan Craig shines a spotlight on an expensive dark secret!

Sexual abuse is one of the most under reported crimes in the UK, even more so when the victim is male. Research into male victimisation is sparse. Much of the effort has focused on prevalence rates but with academics declaring that data collection efforts such as British Crime Survey were “likely to seriously underestimate the levels of interpersonal violence” 1 and literature reviews estimating “anywhere between 2.5 and 36.9% of males” 2 were victims of sexual abuse, much more needs to be done. Recent research indicates ‘1 in 6’ 3 males will have experienced abusive sexual experiences before age 18, however as this statistic negates ‘noncontact experiences’, professionals working in the field widely agree it should be regarded as a low estimate.

Although arguments continue around prevalence there is worldwide agreement that sexual abuse is shrouded in silence and secrecy - the very act itself is usually committed when the child is alone. It is common for victims to be sworn to secrecy and maintain a strict silence, usually through the use of threats of harm to himself or his loved ones, which can often include the perpetrator him/herself.

But why is the sexual abuse and rape of boys and men so under-reported?

The answer is a complex one, as complex as human beings are, but at Survivors Manchester we believe that the answer lies in understanding ‘maleness’ – a man’s internal idea of himself, society’s construction of a man and each culture, religion, age, and

race’s understanding of masculinity.

A boy who believes he has lost something of his maleness will become silent; a lad who is made to feel ‘dirty different’ to the world will shut up; and a man who feels sexually violated will keep quiet. A victim’s own silence is often supported by the silence or unwillingness to talk by his own community, whether that’s a community brought together by religion, culture, sexual orientation, age, race or class. On the whole, men find it difficult to talk and ask for help, but it appears that boys and men from the BME community in Greater Manchester are finding it exceptionally difficult.

Since opening we opened our doors in February 2009, Survivors Manchester has directly supported over 160 boys and men.

2% identified as Black African/Caribbean, 1% as Asian, 4% as Mixed Race and a further 2% identified as ‘other ethnicity’. In an area like Greater Manchester, with such a huge cultural and racial diversity, there clearly is a problem with Black Minority Ethnic boys and men feeling able to come forward. But what barriers are they facing to keep them even more so silent?

Silence within the community Javed (32) was abused as a child for a number of years by a family member. He states that like all other communities: “child abuse is a problem within the Asian Community. It has never been

Scream (anonymous)

11

Sexual abuse is shrouded in silence and secrecy - the very act itself is usually committed when the child is alone.

highlighted in the media or discussed within the community. Until this happens, the issue will continue to be ignored.”

Javed described how he once wrote a letter to a local religious leader telling him about the abuse he suffered in the hope that as the Iman was in such a privileged position, having a large audience at his sermons, he would address the issue so more boys could feel able to come forward. However, he never got a response and the issue was never discussed with him or at Mosque. He says “My letter was ignored” and to many like Javed, this is the equivalent of not being believed and once again being silenced.

Marc (48) was born in a small West African village to an English father and Ghanaian mother and at the age of 4 was sent to live with his father’s family in North West England. Being a young black boy in 1960s West Cumbria came with a number of challenges; not just for its white working class identity, but also as the place where, for a number of years, he was forced to have sex with his 18-year-old cousin… Marc was just 7 years old. Marc describes how at this time he had no black friends, no black family members or black role models and his only contact with “blackness was watching Muhammad Ali, the Jackson Five and Pele”.

He continues: “When my cousin told me ‘if I spoke to anyone about the sexual abuse

no one would believe me because I was an outsider, a brown bugger no one wanted’ his words stopped me from saying anything to anyone.”

Like many boys and men that Survivors Manchester supports, Marc says that at that time, on some level, he knew what was happening was wrong but asked himself the all too familiar questions: How could I tell anyone these horrific things were happening 12

A Survivors Manchester campaign poster urging people to come forward to break their silence

to me? What would people think of me? Is this really my fault? It seems that shame really has become the hallmark of the victim. 4 Marc says that in a way it did not matter that there was a lack of ‘blackness’ in his world to relate to, as he felt black, but was certainly not proud of this fact: “…after all I had been sexually abused as a child. This experience has wrapped a vial of pain and fear around me, it has also had a dramatic impact on my sense of self, my self development impacting on my behaviour and in effect causing really a big gap in between my self-concept (myself as I am) and the ideal self (myself as I would like to be).”

The BME cultural perceptions of masculinity and what is a man supposed to

be is arguably shaped in part by dogma and religious belief – ideas, rules and beliefs often shared collectively by whole communities, which makes talking about ‘unholy issues’ difficult. But isn’t this the very same problem faced by the white catholic majority?

Javed states “sex, sexuality and anything related is rarely spoken of in the Asian Community. When we sit down as a family, watching TV and a scene of an intimate nature is shown we tend to look away out of embarrassment and pretend it’s not happened… silly really. Silence in the Asian Community is down to shame, embarrassment, lack of understanding & education. Ignorance is truly bliss.”

After many years of engaging off and on

with counselling, Javed found the courage to tell his mother about the abuse. He says: “It was the hardest thing I have had to do, how and where do you start? I was in such a state I just said it, “I was sexually abused as a child. I had everything planned in my head, what I was going to say and how she was going to react, a fantasy I suppose. I wanted her to put her arms around me and comfort me like she used to when I was a child, but that didn’t happen, how naïve. Her initial reaction was one of disbelief, and that hurt me. She told a close friend and she said “Oh you can take medication for that”.

Like the vast majority of male survivors, Marc describes how the experience of sexual abuse has had a huge impact on him.

He has struggled with anger, depression, anxiety, addictions, self-hatred, guilt, shame, all of which can be rooted back to something about identity – culturally but most importantly one’s own ‘maleness’.

“As a forty eight year old man, I believe my self-image is much easier for me to be

I had everything planned in my head, a fantasy I suppose. I wanted her to put her arms around me and comfort me like she used to when I was a child, but that didn’t happen, how naïve.

comfortable with. Self-help activities and professional support have given me more ability to cope with not only the sexual abuse, but those life events we all have to cope with. It took me over thirty years to come to terms with the abuse and there’s no doubt that one of the biggest barriers is the shame of ‘outing’ the experience.”

Survivors Manchester is a charity that ‘exists to break the silence of the sexual abuse and rape of men in order to empower those affected to defeat the legacy of abuse and move towards a positive future’.

Marc says that “as a man who identifies as Black with a dual heritage there are difficulties in accessing not only a service like Survivors Manchester but also other emotional well-being services. I had told myself that I can’t tell my white peers my life story because there will be no understanding of the cultural and political importance to that part of my story.”

Both Javed and Marc have found that being in a safe space to explore the legacy issues at one’s own pace, with ‘men like me’ has given them the strength to tell their stories and the freedom to move forward in their lives; “talking in a group with likeminded men, just to know that you can be totally honest and not be judged, WOW!” As Maya Angelou once said “I can be changed by what happens to me, but I refuse to be reduced by it.”

1. Jansson, K. (2006).

British Crime Survey – Measuring crime for 25 years.

Home Office. London. UK. 2. O’Leary, P.J. & Barber, J. (2008).

Gender Differences in Silencing Following Childhood Sexual Abuse.

Journal of Child Sexual Abuse. 12(2). 133-143 3. 1in6. (2011). 1in6 [Website].

Available from: <http://www.1in6.org> [Accessed: 15 November 2011] 4. Anderson, T.H. (2008).

Speaking about the unspeakable: Sexually abused men striving towards language.

American Journal of Men’s Health. 2(1). 25-36.

Duncan Craig is the Founder and Service Director of Survivors Manchester.

Survivors Manchester is a survivor-led and survivor-run voluntary organisation that aims to create and facilitate a safe space for male survivors of sexual abuse and rape to work through personal and sometimes painful issues www.survivorsmanchester.org.uk support@survivorsmanchester.org.uk 13

Focus on international new arrivals

‘when you are outside selling the Big Issue, crying on the street is not a good image’

The Route to Integration In 2010, the Routes Project was commissioned to carry out a targeted piece of work, supporting East European migrants to integrate into the city of Manchester. Through this, the project has changed the lives of hundreds of vulnerable families, but due to a lack of continued funding, support to families will be significantly reduced despite the steady flow of new arrivals. Helen Clifton discovers how the past 18 months has seen their innovative approach change hundreds of lives.

FLIPPING rapidly between English and Romani, Ramona Constantin juggles her notebook, mobile phone and a directory while a newly arrived Roma couple and their small son wait patiently for her to set up an appointment with Job Centre Plus. “They never answer the phone,” she sighs; undeterred, she continues dialing.

Despite arriving in the UK in 2009 with no schooling and very little English, Ramona, 26, now works 12 hours a day combining translating, support and youth work, and a cleaning job. Romanian and Bulgarian migrants face strict employment limitations, leading many down the path of unskilled self-employment.

Like many of the estimated 3,000 Roma people who now live across inner-city Manchester, her first job was selling the Big Issue in the North. Ramona enjoyed some aspects of being a vendor; however, working 12-hour days and surviving off as little as £10 a day, left her feeling tired and frustrated. Her situation worsened when she had to move into her boyfriend’s four-bedroom house – along with 15 members of his family.

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Ramona’s dreams of creating a better future for herself and the two-year-old daughter she had left in Romania seemed impossible. She recounts how seeing a little girl and mother hand-in-hand made her cry.

Desperate, and not knowing where to turn, she was ready to go home.

Big Issue workers, sensing her anguish, told her about Routes. Following a selfreferral, Ramona was contacted by Sybil, an outreach worker, who explained that support was available to access education and employment. Sybil, as an English Roma, was also able to relate to Ramona’s background, and supported her through an emotional time.

“When you are outside selling the Big Issue, to cry on the street is not a very good image,” Ramona explains. “I was keeping my tears inside. But the dream kept me going; the dream to be someone and to change my life.”

After just a few phone calls, Sybil had secured Ramona an interview for a cleaning job. “From that day I knew that there are many chances in the world; you just never

give up. Fight and find the right people who can offer you support, and you can do it.

Without that help from Routes, I would have gone back to Romania.”

The cleaning job benefitted Ramona both financially and emotionally, giving her confidence whilst improving her English.

In October 2010, Ramona’s language skills meant that she was selected to complete a six-month training scheme aimed at giving Roma migrants practical employment skills.

Set up by the Routes Project, together with Manchester Council and Manchester adult education services, the course was delivered by the Big Life Company, who own the Big Issue in the North. As well as sessions on literacy, English and IT, Ramona trained as a Citizens Advice Bureau adviser and shadowed Sure Start staff. In addition to this, Ramona became a registered Romani and Romanian interpreter with the Routes Project.

Since finishing the course, Ramona has gone from strength to strength; the Routes Project facilitated an opportunity for her to provide bilingual support in a number of schools. Ramona also works as a support

Ramona giving advice to a newly arrived family Ciara Leeming

worker at Longsight Youth Centre and continues her work at the local Sure Start Centre, as well as maintaining her cleaning job daily. She has become a key member of the Roma community in south Manchester, supporting new arrivals to access the same opportunities she was offered when she first arrived.

“We open their minds to the fact that they are not alone,” she says. “There are people who can help them. It’s very comfortable to know that you have a friend.

“When you are a new arrival, you need guiding. Then you can manage yourself.”

Her hard work and dedication to her adopted community of south Manchester have also seen her attract praise and attention from across the city. Recently, Ramona has won the Courage section of the Big Life Company internal awards and has been awarded the Achievement category of the inaugural Levenshulme Inspire Awards, a celebration of Ramona’s local neighbourhood. She went on to become the overall winner. In the city’s prestigious town hall, she won the Women and Culture

award at the Manchester Women’s Awards 2011- just metres away from where, just a few months earlier, she had been selling the Big Issue in the North.

“I’ve been an example for many people.

They think, if a woman can do it, why can’t I? It’s crucial for them to have an example.”

Ramona is just one of hundreds of people who have been supported by the Routes Project. Established in September 2002 and financed by the Children’s Fund, the intention was for Routes to support asylumseeking families with children aged 5 to 16 to access education. Routes developed a holistic programme to help families settle their children in school, as well as helping with access to healthcare, employment, welfare advice and decent housing. Committed to providing a culturally sensitive service, the project recruited staff from a range of backgrounds.

Over the past nine years, the project has expanded to meet the needs of subsequent waves of new migration to Manchester, most notably as a result of the 2004 EU expansion. After Romania and Bulgaria

became EU members in 2007, the city saw another influx of migrants.

In the terraced streets where the families settled, tensions began to develop. With large extended families all living under the same roof, complaints about noise were common, as were issues around fly-tipping and anti-social behaviour.

Discussing how to improve community cohesion, Routes Coordinator Jennifer Richardson explains: “It can just take time and patience. Listening to all sides of the community and working with other professionals is a good tool to improve community cohesion. People feel valued when they are listened to.”

Romania is home to the most conservative of Europe’s disparate Roma population - and Manchester’s community of Romania Roma predominantly come from Tandarai and Fetesti, where values are even more traditional. In these areas, marginalisation is still widespread; as a result, access to school can be hindered, and employment is limited to low-skilled jobs.

A long history of discrimination means 15

Vasile Ciara Leeming

that, on arrival to the UK, some Roma harbour a mistrust of services. Concerns grew that without targeted help to access support, the community would become even more marginalised. In May 2010, Routes, together with Cheetham Hill Advice Centre, Citizen’s Advice Bureau (CAB) Manchester, and Manchester Refugee Support Network, were awarded £500,000 over 18 months by the Government Office North West’s Migrant Impact Fund.

As well as easing the pressure on existing services, the fund has supported Routes to reach out to marginalised communities like the Roma, supporting individuals as well as families. The Migrant Impact Fund reached 300 families; 75 per cent were Roma, and 57 per cent of these were Romanian Roma.

Routes employed three outreach workers from various backgrounds, reflecting the diversity of their clients.

Routes workers see clients once a week or month, dependent on their level of need – but they don’t put a time limit on any case.

Initial assessments usually take place in the family home, but the service is flexible.

Complex benefits and employment rules governing the status of Romanian and Bulgarian migrants to the UK, coupled with language barriers, make it hard for new arrivals to understand their entitlements.

But by involving clients in the decisions that affect their lives, outreach workers aim to empower clients and foster a sense of independence.

Romanian Roma social work graduate 16

and outreach worker Marian Guga moved from his home country to work for Routes.

“The fact that we experience a lot of prejudice and stereotypes has inspired me to try to break barriers,” he says.

As well as discrimination in their home country, Roma also face poor economic conditions. Marian believes that forty years of communist rule have left the state corrupt and in desperate need of modernisation.

Only 0.04 per cent of Romania’s Roma population has a degree - making it all the more crucial for young Roma living in the UK to have someone to emulate.

“They see a positive role model within the community and it increases their confidence,” Marian says. “A number of clients can’t believe that you can achieve that. I explain that they can do the same.”

Other role models have emerged from the community, like Leo Tanase and Vasile Dumitru, both 21, who work as selfemployed bilingual support assistants in Manchester schools.

Leo first came to the city from Romania with his family aged ten. He left after two months, spending the next few years in France and Romania, before returning in 2007. After returning to Manchester, he set about working towards a better future for himself and his family. “I didn’t have any qualifications, and I hadn’t been to school. I just hadn’t thought about what to do in the future.”

Despite his complete lack of education, after just three months, the father-of-four could read, write and speak fluent English.

Vasile has received more schooling – around eight years. But when the father-of-two first arrived in the UK with his parents in 2007, he was forced to commute 150 miles to Kendal every day just to sell the Big Issue.

Through the assertive outreach approach of the Routes project, both have been able to access professional employment and education opportunities.

“Their confidence has increased, they are making connections with people outside of their community,” Jennifer says. “The growth and progress of these young people has been an inspiration both to members of their community and to professionals.”

The pair are taking Maths and English GCSE this month; both eventually want to become primary school teachers. Vasile says they now feel British as well as Roma, and that Manchester is home.

“When I didn’t have a job, I didn’t have any plans,” Leo adds. “We just did whatever came our way. Now we are trying to plan and bit by bit, we are getting there.”

With their support, a Roma primary school child can gain confidence in English in just six weeks.

“Often the kids don’t even have reading and writing skills in their own language,” Leo explains. “They feel very scared when they first arrive. So they feel more safe and confident if they have someone from their own community there.”

“It is important to show them what they can do,” Vasile adds. “They look at us as role models and see how they can improve their

Discovering their roots

Part of Routes’ holistic approach towards integration is to support Roma youth to understand their rich heritage, whilst engaging with the traditions and culture of their new home.

As Romani is a seldom-written language with an oral tradition, Roma history isn’t well-documented.

The younger generations are unaware of their ancestors’ violent and tragic history, including their enslavement across Europe until the 1800s and the murder of an estimated 500,000 during the Holocaust.

To augment students’ knowledge and appreciation of Roma heritage, outreach workers and clients recently visited the Appleby Horse Fair in Cumbria. The annual event attracts almost a million Gypsies

lives, and have a better future and education.”

Tracey Bishop, Assistant Head at Cedar Mount High School, agrees that employing Roma staff has helped broaden the horizons of the school’s 134 Roma students.

“In the Roma community there aren’t many professionals or examples of people who work within the public sector, so it is really important for them to see that they can aspire to these types of roles. They want to do a job that benefits the whole community, not just the Roma community – which I think is very important.

“Now, when you ask the Roma children, ‘What do you want to do when you get older?’ they say ‘I want to be a school teacher, policeman or doctor.”

Marian adds that integration is a long process – but it is happening.

“Over the last nine months I have seen some changes. There are still some challenges, but those families who have engaged are more aware. They are much more focused on getting their children in school.”

Yet despite these successes, the future is uncertain. Since last November, there has been a lack of continued funding for the Migrant Impact Fund, leading to the outreach workers losing their jobs. The Routes project has been forced to pick up some of the unclosed cases, although there is a limit to what they can do due to reduced capacity.

In November, independent consultant Sarah Forster conducted a series of interviews with several Roma families. She found that, although 91 per cent of families interviewed

and Travellers from across the UK and gives Manchester’s European Roma the chance to share their traditions.

In August 2011, the Routes Project took a group of young people to Auschwitz, where some 23,000 Roma were killed by the Nazis. For 21-year-old Vasile Dumitru – whose own grandfather survived the death camp – the trip was particularly poignant.

“My grandfather had told me a bit of the story of Auschwitz,” he explains, “But when I went there to see it, it was just like he had told me. Lots of people were crying; I felt shocked and emotional.”

Routes Coordinator Jennifer Richardson, together with Julie Davies, Director of Healthy Communities with the BHA, has also written Long Roads, a KS3 and 4 teaching pack about Roma heritage.

felt settled in Manchester, the same number expressed concern about the end of the project. Forster concluded that barriers still exist, and, “it will be vital for the ongoing functioning of these families that support remains available.”

Reviewing the findings of the report, Jennifer believes that the Roma community needs to use the support of the Routes Project as a springboard to further independence.

“It is essential that families feel confident accessing services themselves,” she says.

“Families have said to us is that the project has increased their understanding of what they need to do to settle in.”

The Migrant Impact Fund has enabled Ramona Constantin, Leo Tanase and Vasile Dumitru to achieve their aspirations and inspire others. For Ramona, the impact has been particularly powerful. Arriving in Manchester just two years ago, she had little awareness of opportunities available. Now her story is celebrated by individuals across all communities, by other professionals, and by the press.

Ramona is equally proud of her achievements. “I never expected to come to this country with no education and end up working as a translator. Now I want to work more, achieve more, and give a better example so that others can follow in my footsteps.”

Using examples from Roma culture and history, the resource has raised awareness amongst both Roma and nonRoma students in schools across the UK. Keen to strengthen their European connections, the project also sent a delegation of young clients to a Roma conference in Budapest.

“I didn’t know that the Roma originated from India,” Leo Tanase, 21, explains. “It is good to know about your own culture, because people ask us”.

For both Leo and Vasile, a highlight of the conference was meeting renowned EnglRoma academic, Dr Ian Hancock.

“We were very impressed and pleased to see a Roma man who is that intelligent and bright,” Leo says. “Listening to him, you don’t get bored; it’s like listening to your mother reading you stories.”

You can find her work in the Manchester Evening News, the Big Issue in the North, Inside Housing, and the Guardian, amongst many others

Helen is a Manchester-based freelance journalist.

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Focus on trans people

An extensive UK survey found that 72% of trans people had experienced harassment in public with the result that 21% avoided going out.

Trans people and Healthcare The number of transgender people in the UK is steadily growing. What do health and social care providers need to know to best meet their diverse needs? Dr Louis Bailey offers an overview.

Rising numbers Although relatively small, the trans population has risen significantly in recent years. The numbers of people seeking medical care for Gender Dysphoria is growing by 15 per cent a year. During the next decade, health and social care providers will be under pressure to meet the unique needs of this growing demographic.

Considerable consequences Despite legal advancements such as the 2010 Equality Act, trans people are among the most stigmatised groups in the UK. They experience comparatively high levels of violence, discrimination and harassment.

Trans people are also more likely to experience social exclusion and isolation.

Overall the personal consequences of coming out as trans can be considerable.

In 2007, an extensive UK survey found that 72% of trans people had experienced harassment in public with the result that 21% feared for their safety and avoided going out.

At work 29% of respondents had experienced verbal harassment, whilst 41% had decided not to transition due to a fear of losing their jobs and 23% had transitioned, but then felt 18

What does ‘Trans’ mean?

‘Trans’ refers to people whose gender identity is different from the gender they were assigned at birth. It’s an ‘umbrella’ term and includes those who have transitioned socially and/or medically from female-to-male (trans men) or from male to female (trans women) as well as those whose gender identity falls outside of mainstream

gender categories (gender-neutral, polygender etc). Trans also includes those who dress in the clothes of the ‘opposite’ sex. As such, trans is a catch-all term covering a wide range of gender expressions and identities.

Each of these groups has different health ands ocial care needs and experiences.

forced to change their job.

Further statistics from the survey confirm the high emotional costs and practical upheavals commonly experienced by trans people: 45% experienced family breakdown, 46% had been harassed by neighbours and 28% of respondents had moved house after transitioning. By choosing, or being forced, to leave their homes and communities trans people often sacrifice support networks and financial security.

or ‘Gender Dysphoria’ by a psychiatrist is needed for people to access gender reassignment through the NHS. However, many trans people feel uncomfortable with these labels, preferring the interpretation of transsexuality as a medical condition rather than a mental illness. Classifying transsexuality as a mental disorder has, in part, contributed to the negative treatment that trans people experience, or perceive they will experience, within health and social care.

Routine healthcare

Gender reassignment

Research has shown that trans people often avoid accessing routine healthcare because they anticipate either inappropriate or prejudicial treatment from healthcare professionals. A European study of trans health and legal issues found that some health care professionals either misdiagnose or refuse to treat general health conditions simply because the person is trans.

A diagnosis of ‘gender identity disorder’

Gender reassignment is often incorrectly thought of as a single defining surgical procedure. It is actually a wide reaching emotional, social and, where appropriate, medical process. Trans people often change their names, titles and pronouns, alter their documentation and disclose their gender identity to their families, neighbours and co-workers. After approaching their GP, they may seek referrals for services

Trans people and healthcare a summary of good practice

•

There should be an awareness of how to respect the trans person’s gender identity and wishes by using the correct name and pronoun even where it does not necessarily ‘match’ with the person’s body or even their legal status.

• Knowledge of someone’s trans status should be handled sensitively and confidentially at all times.

• Trans awareness and equality training should be available for all members of staff and should be undertaken systematically across every staff tier.

•

Public health campaigns especially around prostate screening for trans women and breast/cervical screening for trans men are strongly recommended

• Regular equality impact assessments should be undertaken with

such as counselling, specialist gender clinic evaluation, endocrinology, speech therapy and surgery. Benefits of gender reassignment include improvements in psychological well-being and quality of life.

Some trans people socially transition but do not pursue medical gender reassignment treatment. Their needs must also be considered by health and social care services.

A 1998 legal case found that blanket bans on gender dysphoria treatment within the NHS were unlawful and this has encouraged funding bodies to engage with issues of gender reassignment. However, by contrast, GPs can be far less engaged, often going without training on gender issues and therefore lacking knowledge about the correct referral process for gender reassignment treatment.

Patients have reported that some GPs have a negative attitude towards transgenderism, viewing the treatment of Gender Dysphoria to be ethically wrong.

Some patients found that GPs sent them for unnecessary psychological therapy, stalled procedures or refused to act at all.

Even with a GP who is ‘on side’, waiting times are lengthy due to the high demand for services and low clinical capacity. Gender reassignment is still controversially regarded, resulting in few medical specialists in the area. Battles with PCTs over funding are increasingly common.

at odds with their gender, leading to low selfesteem and poor body image. They may be less likely to follow health advice and more likely to develop a range of self-destructive and risky behaviours. The 2007 UK survey showed that just over a third of trans adults had attempted suicide at least once.

Trans people need access to appropriate mental health services to help them to cope with the consequences of negative experiences in their lives. However, as with mainstream health services, trans people are often reluctant to access mental health services for fear of inappropriate and prejudicial treatment .

Mental health

Trans people are likely to feel especially anxious and vulnerable in public wards, changing rooms and bathroom facilities due to fears around undressing. Such spaces can reveal discrepancies between a person’s gender and their birth sex, which is very private information and can cause negative reactions or treatment from staff.

Trans people’s well-being, quality of life and life expectancy are all affected by the social stigmas that they face as well as difficulties accessing effective health and social care. On top of this, many trans people struggle with the effects of being born into a body that is

professionals working in the area • Meaningful stakeholder consultations should be undertaken to effectively engage with the trans community.

•

These should be carried out keeping in mind that the community has capacity issues and community members are often financially disadvantaged, therefore consultation participants should be fairly compensated for their time.

• It would be useful to sponsor and/ or organise trans health and well-being conferences, workshops and networking opportunities.

•

A mapping exercise should be undertaken in order to identify existing services, and gaps in services, pertaining to trans health.

Dr Louis Bailey is a consultant for TREC the Trans Resource and Empowerment Centre www.transcentre.org.uk

Scans and preventative health measures Trans people may present as one gender, but their bodies may require scans associated with their birth sex, such as prostate screenings for trans women, and breast and cervical screenings for trans men.

Research shows that trans people regularly avoid having scans due to prejudicial or inappropriate treatment from staff and/or discomfort about using services associated with their birth sex rather than gender identity (i.e trans men having to use ‘women’s’ services).

Public wards and clinics

19

Focus on human rights

Health and human rights in the UK

Ellie Keen looks at the development of the Human Rights Act and the need to encourage its use and application by the voluntary and community sector

20

21

Focus on human rights

The status of human rights in the UK

One of Europe’s most senior judges, Sir Nicholas Bratza, publicly accused the government of pandering to the tabloid press in its criticism of the European Court of Human Rights. This preceded a speech by the Prime Minister to the Parliamentary Assembly of the Council of Europe about the effectiveness of the European Court.

Cameron was speaking on behalf of the UK which currently holds the Chair of the Committee of Ministers.

It is twelve years since the Human Rights Act (HRA) came into force and although it has resulted in significant and important changes for ordinary people, it has faced challenge and criticism over the years to the extent that government has sought its repeal and replacement with a Bill of Rights. This has been questioned by many – including the Equality and Human Rights Commission (EHRC), the government funded body with a national mandate to promote and protect human rights in Britain, which points out that the HRA is already a Bill of Rights.

Opinion polling commissioned by the EHRC, for their Human Rights Inquiry conducted in 2008, showed widespread positive support for the concept of human rights and for a law to protect people, with 84 per cent agreeing that it is “important to have a law that protects human rights in Britain”. There was strong public support for the protection of human rights in law and when used effectively, the Human Rights Act (HRA) made a positive difference to peoples’ lives as well as improving the effectiveness of public services. The substantial lack of understanding of human rights, significant misconceptions and misreporting of human rights, as well as a lack of leadership from the government, politicians and others were recognised.

The EHRC believes that there should be a greater concentration on improving understanding and reducing misconceptions of human rights by people working in public authorities, the general public, politicians and the media. Alongside this, work should be undertaken to improve the way the HRA is applied by public authorities in their 22

policies and practices. This is vital at a time when cuts in funding will have an impact on services and possibly the human rights of vulnerable individuals. Interestingly in a recent study of the homecare system in England the EHRC was disturbed at the poor treatment faced by many older people.

Examples which breached their human rights included physical or financial abuse, disregarding their privacy and dignity as well as older people being left isolated and confined to their homes as they lacked support to get out and take part in community life. Yet evidence from the home care industry indicates that social activities are some of the first support services to be withdrawn when local authorities reduce their spending on care services.

The importance of human rights in healthcare

Health and human rights have a close and mutually supportive relationship. Good healthcare is essential to ensure that an individual is able to retain their self-respect and to access as full a range of possibilities to take part in the life of the community as the limits of their health allow – in other words, to enjoy their human rights. On the other hand, enjoyment of the full range of rights is also likely to lead to better health overall.

However, healthcare, by its nature, involves some outside intervention into people’s private lives – and normally into the lives of people who are at least temporarily very vulnerable. If human rights are not kept at the forefront of healthcare, it can easily tip over into direct violation of the rights of those it is supposed to be assisting.

Healthcare professionals need to make sure that any treatment given or care provided must respect the individual throughout the process - even when professional judgement or difficult decisions about resource allocation are involved.

Using human rights to promote better health

At international level, the UK has signed up to the full range of human rights – including

the right to health, to nondiscrimination, life, liberty, participation, private life and family life, and the right to be free from inhuman and degrading treatment – among others. But the UK Government has so far incorporated only some of these rights into national legislation – in the form of the HRA. The right to health is not included in the HRA, which means that many examples of poor healthcare or lack of access to healthcare cannot be appealed in front of UK Courts. There is therefore less accountability for inadequacies in healthcare provision than there should be, if we were to comply with our international obligations. As mentioned below, this does not stop individuals from challenging at least some breaches of their human rights in the provision of healthcare, since many issues can also be addressed under the rights which are included in the HRA – for example, the right to private life or the right to be free from inhuman and degrading treatment.

Because of the possibility to appeal the rights in court, the HRA is a powerful mechanism by means of which the government and health providers can be held to account. This is chiefly because most institutions working in health and social care have a legal duty to comply with the provisions of the HRA in everything they do.

Where there was a real and immediate risk of a patient detained in a mental hospital committing suicide, Article 2 of the Human Rights Act imposed an operational obligation on the medical authorities to do all that could reasonably be expected of them to prevent him doing so.

This includes NHS Trusts, local authorities, Commissioning Groups and for most purposes, care homes. Failure to comply is both a violation of our international human rights commitments and unlawful under the Act. The Act also imposes some ‘positive obligations’ on public bodies to take proactive steps to secure people’s human rights. This includes ensuring individuals are not neglected in hospital and patients have food, water and necessary medical treatment; taking domestic violence seriously by providing refuge space to women at risk; and managing the care of individuals with a mental health illness.

“Where there was a real and immediate risk of a patient detained in a mental hospital committing suicide, Article 2 of the Human Rights Act imposed an operational obligation on the medical authorities to do all that could reasonably be expected of them to prevent him doing so.” (Savage v South Essex Partnership NHS Trust, 2008) Appealing a decision need not necessarily mean taking cases to court. A British charity, the British Institute of Human Rights have been collecting examples of questions or complaints raised by individuals or organisations which simply refer decisionmakers to the rights contained in the Human Rights Act, and which have led to a change in decision or a review of a process. Such cases include a decision to move a wife into a care home far from her husband being reversed as a result of raising the couple’s right to family life; women suffering domestic violence being able to secure a place in a refuge by appealing to their right to life; a learning disabled couple persuading a residential centre to turn off CCTV cameras which had been placed in their bedroom, using their right to private life, and the review by a hospital ward of a blanket policy of placing Do Not Resuscitate Orders on every bed. The policy was challenged using the right to life and the right not to be discriminated against.

A human rights based approach to health Challenging decisions when they do not comply with human rights is one method

organisations can use to ensure better healthcare. However, a more effective method is to build human rights into the policies and practices of health care providers so that the need to challenge is removed, or lessened. A human rights based approach (HRBA) puts human rights at the centre of health care planning and implementation: policies are built around human rights principles and legislation, and decisions are taken with consideration for every individual patient’s dignity, need for information and involvement, and general healthcare needs. A fully fledged HRBA should help those individuals in need of care to grow and feel empowered – the better to enjoy the other human rights.

A HRBA can therefore help to ensure that those in need of healthcare will be treated in a way which respects their basic rights, without discrimination, and with dignity.

It can also help healthcare professionals to negotiate the sometimes difficult decisions which arise where rights conflict, or where it seems the ‘best’ decision in medical terms does not accord with the wishes of the individual concerned.

The HRA and other international human rights legislation can provide a useful framework for public bodies, such as local authorities, health services, care homes, police forces, prisons and schools to plan and deliver public services which are more effective and which protect and respect every individual’s need for human dignity.

Empowering voluntary sector organisations

The BHA is working closely with the British Institute of Human Rights (BIHR) together with about 20 other organisations, to empower individuals to work with providers to incorporate the values and the legal obligations into their work - and to raise awareness about the use and benefits of using human rights in healthcare. The project is supported by the Department of Health and builds on a number of years’ work that BIHR has been carrying out to embed human rights into the policies and practice of health and social care providers, including NHS

Trusts. To date training has been provided for over 1600 health sector professionals and intensive work has been carried out with 9 different NHS trusts to develop tools and test a framework for human rights in healthcare.

The project with voluntary sector organisations centres around three key priorities. Firstly, for the partner organisations to begin using human rights in their direct work with service users, raising awareness of human rights so that individuals are better informed and feel able to challenge decisions which impact on them. Secondly, to promote better links between the voluntary sector and health care providers, and to place human rights high on the agenda in discussions or other interactions between them. Thirdly, to build a network of voluntary sector organisations involved in health and social care committed to using human rights in their work and advocating for better compliance with human rights commitments.

BIHR will be running a series of open events in the autumn of 2012, together with partner organisations, to bring the results of the project to a broader audience.

3 roundtable events, to be held in 2013, will bring key stakeholders in health and social care together in order to look at ways of promoting better interactions between different sectors using human rights as a common language and common framework.

Despite the negative publicity about human rights, they provide a baseline for society, an agreed minimum standard below which no-one should be permitted to fall. The Human Rights Act – and other human rights treaties - are there for individuals to use, and they can make a real practical difference when rights are under threat.

Ellie Keen is a Health and Human Rights Officer at the British Institute of Human Rights Donna Miller is the BHA’s project lead for the health and human rights project 23

Focus on HIV

Testing times?

HIV testing in African communities in the UK

1 in 20 Africans living in the UK have contracted HIV. Eleanor Briggs, NAT (National AIDS Trust) has been looking at the barriers to testing in these communities and what policymakers are doing to remove them.

People often think that in the UK HIV is a virus that only affects gay men, and it is true that nearly half of people living with HIV in the UK are gay and bisexual men. What is less well recognised is that African communities in the UK are also disproportionately affected, with 1 in 20 Africans living with HIV. Even within African communities themselves, there is little awareness of the risk of HIV transmission and the importance of HIV testing. NAT (National AIDS Trust) has been looking at the barriers to testing in these communities and what policymakers are doing to remove them.

Africans account for two-thirds of all heterosexually-acquired infections in the UK, with over 24,000 Africans being seen for HIV care in 2010. This is nearly a four fold increase on 2001 when fewer than 7,000 Africans were accessing HIV treatment and care. It is not only the number of African people being diagnosed which is a concern, but the late stage at which they are being diagnosed. In 2010 over 60% of Africans diagnosed with HIV in the UK were diagnosed late, after the point at which treatment should have started.

Late diagnosis can have significant health implications, with a recent study reporting 24

that starting treatment late can result in up to 15 years’ loss of life. In addition there are public health benefits of diagnosing people early as once people have been diagnosed they can take steps to prevent the virus being passed on.

The importance of people testing for HIV and beginning treatment on time was underlined by the results last summer of the first global clinical trial into the preventative benefits of HIV treatment. HIV treatment works by reducing the level of HIV in the body to such an extent that a person’s infectiousness is almost zero. The trial found a 96% reduction in risk of HIV transmission when an HIV positive partner received treatment and responded effectively.

You might assume that most Africans were infected abroad. However, research from 2009 found that between a quarter to a third of African heterosexuals and nearly half of African gay men may have acquired their HIV infection here in the UK. This underlines the need for effective UK prevention programmes to raise awareness about HIV and encourage Africans to test.

Work has already begun. Sigma Research were contracted by the National African HIV Prevention programme (NAHIP) (funded by

the Department of Health) to look at the HIV prevention needs of African communities in England. Their Bass Line 2008-9 survey found that, despite the prevalence of HIV in African communities, 40% of respondents had never had an HIV test. Of those that had never tested, the majority (53%) said they had not tested because they had ‘no reason to think I have HIV.’ This points to the need to increase African people’s awareness of the risk of HIV infection, something that is underlined by the survey’s findings around sexual risk. A quarter of all those who said they had had sex said they did not use a condom, with one-inten respondents saying they had sex in the last year without a condom with someone of a different HIV status to themselves.

Poor knowledge about the reality of living with HIV was also a concern. Nearly a fifth of respondents did not know there was medication to help people with HIV and more than a third did not know that treatment is more effective if started earlier. With huge improvements in treatment, if someone is diagnosed on time they can expect to have a near normal life expectancy and an active working life, relationships and children. If people are not aware of these improvements and the importance of starting treatment on

time, it is understandable that they may not see the point of testing.

Stigma is also a significant obstacle.

Stigma ranges from the belief that HIV is associated with promiscuity, to the perception of HIV as a terminal disease. Fear of isolation is another disincentive. Religion plays an important part in many Africans lives. Whilst many faith leaders are very supportive of people living with HIV, rejection by faith communities is a fear for many.

Some barriers to testing are purely practical. Many Africans are confused by the structure of healthcare services in the UK. Bass Line 2008-9 found that over 10% of respondents wanted to take an HIV test but did not know where to go to get one. NAHIP has a new campaign, ‘I do it right’ (www. idoitright.co.uk) which aims to meet some of these information needs, providing simple information about where to go to test.

Clinical experts responded to the problem of late diagnosis and undiagnosed infection in 2008 when the first UK National Guidelines for HIV Testing were published by the British HIV Association (BHIVA), British Association of Sexual Health and HIV (BASHH) and British Infection Society (BIS).

The guidelines state that HIV testing should be routinely recommended to all men and women from a country of high prevalence (>1%). This would include people from African communities. However, unlike gay and bisexual men, people from a country of high prevalence are not included in the groups who should be provided with repeat testing.

This guidance was built on in the most recent testing guidance published by NICE in March last year. This aims to increase the uptake of testing in African communities, suggesting ‘trigger points’ when Africans should test, such as at the beginning of

a new relationship. However, it does not suggest a regular annual test for all sexually active Africans, even though this is included in the parallel guidance for gay and bisexual men, published at the same time. NAT is calling for the NICE guidance to go further and recommend an annual HIV test for all sexually active Africans in the UK when it is revised later this year.

Why an annual test? There are many missed opportunities when people with undiagnosed HIV present to GPs or in secondary care and are not diagnosed. An annual testing recommendation would highlight to clinicians the importance of testing Africans for HIV. Some people feel uncomfortable bringing up the subject.

An annual recommendation would help clinicians explain to patients why a test is being offered, giving them the extra confidence they need.

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Some people are concerned that such community specific recommendations may stigmatise African communities. NICE considered these concerns, fearing that the production of African specific testing guidance may “reinforce the message that ‘AIDS is an African disease’”. However, they felt that the statistics justified the approach.

And they do. Recent Health Protection Agency figures show that 29% of African heterosexual men with HIV in the UK do not know they have the virus (the undiagnosed figure is lower for African women - 22% - probably because of the success of antenatal screening).

Nationally, HIV prevalence amongst gay and bisexual men is similar to that amongst African men and women, and yet there seems to be far less open discussion about the virus in African communities. Instead of worrying that messages about HIV may increase hostility and racism, we need to acknowledge the problem, speak openly about it and make it easier for African people to test.

And there is good news in relation to

accessible testing. Both BHIVA/BASHH/BIS and NICE testing guidance recommend more wide scale testing in primary, secondary and emergency care as well as within community settings. In 2008 the Department of Health funded the Health Protection Agency to run eight pilots of HIV testing outside traditional settings. They found that the routine offer and recommendation of an HIV test in primary care, hospital and community settings was feasible, acceptable and cost effective. One pilot targeted African and Caribbean communities in settings such as churches and community centres. 97% thought the service was appropriate, 88% stated that they would use the service again, and 97% would recommend it to a friend.

These findings are particularly important given that some Africans are reluctant to go to sexual health clinics.

With the coming changes to the NHS, and responsibility for public health moving to local authorities in 2013, it is vital that the momentum on HIV testing is not lost.

NAT successfully campaigned with others in the sector to ensure late HIV diagnosis was included in the Public Health Outcomes Framework so that HIV testing is prioritised at the local level. Local authorities, particularly those in high prevalence areas, now need to make sure that HIV testing is made widely available to the African communities in their region. We need to get the message out that sexually active Africans in the UK need to test regularly for HIV. By raising awareness we can reduce the number of African people who are undiagnosed and ensure people start treatment on time, so they can go on and live long and healthy lives.

NAT is the UK’s leading charity dedicated to transforming society’s response to HIV. We provide fresh thinking, expertise and practical resources. We champion the rights of people living with HIV and campaign for change.

“Know your HIV Status” Trophy Football Tournament The LASS ‘Know Your HIV Status’ football tournament at the Emerald Centre in Leicester on 24 July 2011 achieved more than the expected outcomes. The focus of the tournament was to raise awareness of HIV, ‘kick out’ stigma and discrimination and promote HIV testing among African communities, in particular African men, because LASS statistics over the past 2 years highlight their reluctance to be involved in HIV issues and HIV testing.

HIV was a topic of conversation across 26

the ground – with a queue for Rapid HIV tests at the LASS outreach van. Twenty nine African men and three African women were tested for HIV during the day. The tournament and HIV awareness had a longer reaching effect – more people visited LASS for tests in August with 4 new diagnoses of HIV by the beginning of September.

To find out more about LASS Rapid HIV Testing visit www.lass.org.uk

Focus on Hepatitis C

Hepatitis C the hidden epidemic Reflections on the public health response to Hepatitis C by Colin Tyrie

Context is everything when we look back at the response to HIV in the 1980’s and early 1990’s. I recall working in acute HIV services in London during this period of political change, with clashes between unions and government, the National Front and Anti-Nazi League and the oppressive, and repressive years of the 1970’s a fading memory.

As a recently qualified nurse I shared many of those ideological beliefs about equality and, in particular, a right to good health care without prejudice. Witnessing the appalling treatment of people with HIV by some hospital staff led to my passion to work with those patients.

In those early days of HIV the culmination of several factors created a tipping point.

These included the movement towards gay rights, influential people becoming open about their sexuality and their HIV status, an increased awareness of HIV in Africa (and global inequalities in health) and a growing movement based upon pragmatic treatment of drug users.

Fast forward to the end of the 1990’s and we see a very different world. HIV has become more integrated into mainstream healthcare with greatly improved outcomes. Access to sterile injecting equipment and condoms has become a standard primary prevention health care intervention. The paradigm has shifted from ‘dying with AIDS’ to ‘living with HIV’. However, another blood-borne virus has been discovered, hepatitis C; and it too appears in significant prevalence within

What is Hepatitis C (HCV)?

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A blood-borne virus that infects the cells of the liver.

HCV can only be transmitted by infected blood.

Approximately 20% of those infected with HCV clear the virus from their body within the first six months .

For the remaining 80% a chronic (long-term) infection develops.

certain marginalised populations.

The impact of hepatitis C in the UK is most profound upon injecting drug users, people from countries of high prevalence (often immigrants), men who have sex with men, and prison populations. This profile means that lessons learnt from HIV prevention and treatment can be advantageous to hepatitis C (HCV).

Sexual transmission Like HIV, we are not entirely sure when, or where HCV first started; however, there is a crucial difference between the viruses’

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In most cases HCV causes no noticeable symptoms until the liver has been significanty damaged Unlike other forms of hepatitis there is no vaccine for HCV. HCV can be treated successfully, some strains of HCV respond better to treatment than others.

transmission and movement into the general population. The discovery that HIV was transmittable via the sexual route and could affect ‘anyone’ led to a wider sense of urgency to ‘do something’. National awareness campaigns were launched, and new drug treatments were made available.

HCV has a much lower transmission via the sexual route (approximately 6%). It thus remains mostly within marginalised groups and a lower priority for public health.

For injecting drug users the prevention message in HIV was to always use a new needle and syringe for every injection. By the late 1990s sterile needles and barrels were available via needle exchange programmes.

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It has come to be stigmatised as a drug-addictsâ&#x20AC;&#x2122; disease. This can make it difficult to tackle from a public health perspective, but it also creates a secondary stigma. For someone to come forward for testing they have to incur the suspicion of criminality and possible moral judgement.

Chronic Hepatitis C Jian-Hua Qiao, MD, FCAP

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Unfortunately, people were still sharing their spoons and filters as it was illegal to supply these for several more years.

It’s likely that the prevalence of hepatitis C grew amongst injecting drug users at this time. Both hepatitis B and C have much higher levels of virus present in the ‘dead space’ of a used needle and syringe (between the plunger and the needle itself). The ability for HCV to survive outside of the ‘host’ in dried blood also meant it was easier to pass between drug users who may otherwise have been adhering to messages about HIV prevention. Crack-cocaine use also grew in the UK at this time. Amongst injecting drug users heroin users typically inject once or twice a day, whereas crack cocaine injectors may use the drug many more times resulting in a greater likelihood of sharing equipment.

In 2009 NCE issued guidance confirming that free needle and syringe exchange schemes are an important and cost effective way of tackling the spread of viruses such hepatitis C and HIV among people who inject drugs (and subsequently the population at large). During the formative years of HIV treatment, money spent on health was much less dependent upon specific, measurable outcomes; the precautionary principle was often sufficient indication of a need to fund initiatives. This was crucial to the development of condom provision, health campaigns, and harm reduction interventions, where outcome measurements were always problematic.

The UK has some of the lowest figures for HIV amongst injecting drug users in the world. However there is an increase in HIV prevalence amongst injecting drug users in the UK and this is leading to an increase in co-morbidity of HCV and HIV. Diagnosing HCV in current injecting drug users is difficult due to individual’s reluctance to attend hospital clinics. Dry blood spot testing (DBST) is a robust and easy method of determining HCV (and HIV) status, which can be carried out by staff working in drug services. DBST is better for service users who have problems taking blood from the vein due to damage from injecting drugs.

Also it does not have to be carried out by a nurse or other clinical practitioner, saving

time and costs.

So far drug service commissioners have been slow to support DBST. It tends to be used in primary care services, or where payment by results pilot schemes have the procedure mandated into drug service contracts.

In Greater Manchester, the GMHCV Strategy Group is supporting training to improve blood borne virus (BBV) awareness and testing via a cascade approach. BBV ‘champions’ and ex-service users help to demonstrate links between testing, treatment and recovery.

A drug-addicts’ disease?

HIV is mainly transmitted by sexual activity that (in most situations and most countries) is legal. Like HIV, cases of HCV are higher amongst men who have sex with men (MSM) than the general population, although targeted health screening might be distorting these figures. Only 6% of tested cases of HCV have an identified sexual transmission route. Because hepatitis C is so efficiently transmitted by the sharing of injecting equipment, it has come to be stigmatised as a drug-addicts’ disease.

This can make it difficult to tackle from a public health perspective, but it also creates a secondary stigma, beyond that of HIV. For someone to come forward for testing of HCV infection they have to incur the suspicion of criminality and possible moral judgement.

In Australia, the 2001 C-change enquiry found that discrimination against people with hepatitis C was often motivated by two factors: stereotyped responses towards people on the basis of past, current or assumed injecting drug use or fears about hepatitis C infection (based on a lack of understanding about the virus).

In the case of HIV, tackling health inequalities caused by multiple discriminatory factors required the integration of civil rights and public health initiatives. Targeting health resources at marginalised groups can risk further stigma.

It can make them easy to label as likely to have the condition or to be engaged in ‘illegal’ or ‘immoral’ behaviours.

Don’t die of ignorance The Terrence Higgins Trust suggests that the early UK campaigns to prevent HIV during the 1980’s had a positive impact. The predicted numbers of infection rates have not happened in the UK and this may have been as a result of hard-hitting public health messages. Likened by then Health Secretay Norman Fowler to ‘running a VD campaign in the army’, the national AIDS awareness campaign urged, ‘Don’t die of ignorance’.

There were frequent television adverts and a leaflet on the doormat of every household in the country. This kind of response is rare outside of influenza pandemics and occasional campaigns to promote new childhood vaccines.

There are some similarities between the 1980’s and 2012; we have a period of national austerity created by a recession and a government that is promoting a sense of personal responsibility and traditional values.

However, in 2012 we have much higher expectations about access to treatment and medication. Life expectancy in general has improved but chronic health conditions have increased creating a demand upon the health budget like no other time in history.

The need to ration health care budgets and consider the impact and effectiveness of funding has promoted accountability, but also reluctance to fund areas of high cost but no rapid outcome. HCV treatment remains costly and the impact of not treating those people who are HCV positive is not immediately noticeable. The slow progression of the disease and the non-symptomatic nature of HCV (sometimes referred to as the ‘silent killer’) can mean that it is easy to ignore. With HIV, the rapid progression of overwhelming opportunistic infection resulted in a morbidity of young people that could not be ignored. Ring-fenced HIV funding allowed the rapid development of specific services, although these are now increasingly integrated into mainstream health care provision.

A model from HIV care in the 1980’s that works well for HCV is ‘buddying’. Using a peer support system to share the patient 29

It is the people who are unknown faces, recovering from HCV infection and the associated stigma that can be the catalyst for change.

Colin Tyrie - Senior Public Health Development Advisor, Manchester Mental Health and Social Care Trust

Who gets Hepatitis C? •

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An estimated 250,000 people in the UK alone.

Injecting drug users are at greatest risk of infection - approximately 50% of active injectors have HCV. Some inner city areas much higher

experience and demonstrate recovery at first hand can be crucial to improve successful outcomes with limited resources. The ‘expert patients’ who have been treated for their HCV are possibly the most valuable and costeffective resource that the health service has in its fight to turn the curve of HCV infection.

It is now over twenty years since I started working with HIV positive patients; the majority of these had an AIDS diagnosis and were acutely unwell, often dying. The unit I worked in no longer treats HIV positive patients alone and instead is an infectious diseases unit with a sexual health centre for day care.

What is on the horizon for HCV? Like HIV, treatment will hopefully become more effective, easier to tolerate and of shorter duration. But what about stigma? Despite 30

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rates of infection than other areas.

The World Health Organisation estimates that 3% of the world’s population is infected, with around five million of these in Western Europe.

equality legislation periods of austerity and service cuts can result in negative approaches to conditions that carry the extra burden of stigma. The self-disclosure of HIV by prominent individuals in sport and the arts had an immeasurable impact upon the reduction of the stigma of HIV; perhaps we will see a similar effect with HCV. Until this happens, it is the people who are unknown faces, recovering from HCV infection and the associated stigma that can be the catalyst for change.

Focus on cancer

65-70% of all cancers are found in people who are over the age of 65.

Cancer and BME communities One in every three people in the UK general population is likely to be diagnosed with cancer. This widely quoted statistic would not be accurate, if it was only applied to ethnic groups. It is true that incidence rates of cancer are currently generally lower in Black and Minority Ethnic (BME) populations.

However for specific types of cancer, incidence rates are higher in some ethnic groups. For example primary liver cancer is more likely to impact Chinese communities, and a less common cancer, Myeloma, is twice as common in African Caribbeans.

The number of cases of cancer in BME communities is expected to rise significantly as BME populations age. Lifestyle changes after migration may also increase (or decrease) certain cancer incidence rates, as demonstrated in the USA by the Japanese population. (Breast cancer rates increased in Japanese women).

Cancer death rates are more likely to be higher in socioeconomically deprived areas and are generally higher in the North of England than the South. Some older White ethnic populations, for example Irish communities, are already affected by rapidly increasing rates of cancer. Ethnic categories are not broken down to include a number of White ethnic groups living in England.

Access to cancer services Thirty years ago, cancer service accessibility was not a priority for the majority of ethnic groups in the UK. However with increasing numbers of BME community members affected by cancer, lack of access to, and poor uptake of, cancer services must be addressed.

The outcome of failing to address access

and uptake issues, may lead to a significant increase in cancer death rates in BME communities, particularly if NHS screening service appointments are not picked up.

In 2007 only 20% of breast cancers found in black women were detected via the NHS breast screening programme, compared to 32% of all women.

The All Breast Cancer Reports for 2006 and 2007 noted that ethnic groups were more likely to be diagnosed at younger ages. Some groups are more likely to be affected before they are invited for their first breast screening appointment. The youngest ethnic group at diagnosis was Black women.

Knowing how breast cancer is currently impacting BME communities is of particular importance for health professionals, especially in GP practices, as over 90% of contacts with the NHS, take place in primary care (RCGP 2004). NHS staff should receive training on up to date ethnicity related cancer evidence, to effectively address BME cancer inequalities. Lack of BME cancer awareness amongst health professionals can lead to delayed referral, increasing the risk of late stage cancers and premature death.

Health service providers have a duty of care, linked to the Equality Act. Failure to deliver positive outcomes could also have expensive financial implications.

Barriers to accessing referral appointments The Cancer Patient Survey found that some groups, including women, younger people, non-White patients and those with less common cancers, often have to see their GP three or more times before a referral is made.

BME organisations engaging with BME cancer patients are concerned about a growing number of reports about delayed referral to specialists. Community members from diverse socioeconomic backgrounds report similar delays. Delayed referral is not confined to people whose first language is not English, but includes the English speaking first generation (born in the UK).

Ethnic groups in the UK are currently more likely to live in and around highly populated inner cities, where, with the exception of a few cities, social deprivation is more likely. Conversely, displaced newer ethnic populations are increasing in size in rural areas.

Barriers to accessing NHS cancer screening services Studies have focused on low levels of cancer awareness in BME communities and this is one of the primary reasons for poor uptake.

However BME community members often report negative screening experiences. Some women are very concerned about lack of sensitivity during screening appointments.

If mammograms, or cervical screening are perceived to be a painful experiences, the BME grapevine can be a powerful deterrent to others.

Customer service issues in NHS screening services must be addressed to prevent an increase in poor uptake statistics, particularly amongst older BME women.

There are ethnic variations in the age, route of presentation and tumour characteristics of breast cancer patients in England. Patients known to be Black are younger, less likely to be screen detected 31

There is no word for cancer in some languages.. interpreters rarely receive cancer awareness training.

and have worse prognosis tumours (NCIN Cancer and Ethnicity Resource Portal).

Three NHS Cancer Screening Programmes are currently accessible in the UK: Breast cancer, introduced in 1988, Cervical cancer, introduced in 1988, Bowel cancer, from 2006.

Detecting cancer at an earlier stage saves lives and helps to reduce the need for major surgery. The NHS Breast Screening programme currently saves about 1400 lives per year.

Resources in other languages There is no word for cancer in some languages. Overloaded GP practices may be impacted by inadequate resources to cope with diverse languages and communicate effectively. This is also a problem in secondary cancer services. During chemotherapy, the ability to understand and consent to the side effects of drugs is extremely important and potentially life saving, yet there is a dearth of translated treatment information in other languages. Additionally, interpreters rarely receive cancer awareness training.

Access to cancer evidence on ethnicity There has been a dearth of cancer evidence on ethnicity since NHS records began, primarily because very few BME patients were diagnosed with cancer in the past (younger age structures). Ethnic data monitoring in the NHS has been a hotly debated subject for many years, especially after it became compulsory for inpatient services from April 1995.

Opportunities to improve ethnic data moni32

toring across health care services (including cancer charities) have been repeatedly missed and there have been a myriad of reasons for delayed improvement.

The purpose of collecting ethnic data in health services is unclear for a significant number of health professionals and BME community members.

Lack of analysis of existing ethnic data may have contributed to the belief in some quarters that data collection is a costly waste of time. Inappropriate research utilising ethnic data may also deter BME community members from participating in ethnic data collection.

It is possible to train staff to improve ethnic data monitoring, by delivering high quality equality and diversity training. In 2004 ethnic data collection at the charity Cancerbackup (now merged with Macmillan Cancer Support) improved significantly after tailored diversity training. This led to the charityâ&#x20AC;&#x2122;s first specific BME cancer service usage report http://bmecancer.com/images/ cancerbackup/HelplineusersReport.pdf The National Cancer Intelligence Network (NCIN) was launched in 2008 to improve standards of care via data collection. NCIN and Cancer Research UK launched the first comprehensive UK report on cancer and ethnicity in 2009. (Cancer Incidence and Survival By Major Ethnic Group). NCIN acknowledged there were significant gaps in the report, due to the number of cancer patients with no ethnic group identified.

You can do your part to ensure vital data on ethnicity is collected in cancer services (patients can also query), in the knowledge that the information collected today could improve standards and save lives tomorrow.

Rose Thompson Director BME cancer.communities service@bmecancer.com Article can also be accessed at www.bmecancer.com Š BME cancer.communities

BME Cancer.Communities is a social enterprise with a Black and Minority Ethnic (BME) and low income household remit. In 2010 the organisation hosted the first major event outside of London (Too Quiet Too Long), to recognise Ethnic Minority Cancer Awareness Week (www.emcaw.co.uk). Wayne Marston attended the event and is now a member of BMECC’s Outreach team.

Wayne’s story

Wayne’s father was diagnosed with prostate cancer two weeks before his death in a local hospital. He was 65.

Despite numerous visits to his GP to find out why his health was deteriorating, the diagnosis of prostate cancer was not picked up.

Wayne’s father even visited a private doctor in Leicester to get a second opinion. Shortly after, the family became so concerned, they made an emergency trip to A&E. One week after admission Wayne’s father lost the use of his legs.

He died in hospital two weeks after diagnosis. This was of course a shocking

outcome for Wayne’s family, as they were preparing for long term care.

After his father’s death, Wayne began his own investigation into prostate cancer. He soon discovered African Caribbean men are three times more likely to be diagnosed with prostate cancer. Wayne also discovered that his own risk of prostate cancer was increased due to his father’s diagnosis at a relatively young age. Wayne’s investigations helped him to request relevant tests and despite a borderline Prostate Specific Antigen (PSA) blood test result, his local Urology Consultant suggested a biopsy.

Wayne was found to have an early stage

aggressive type of prostate cancer. His prostate gland was removed and he remains well. At diagnosis, Wayne was 45, with a young family.

23% of newly diagnosed cancer patients came through as emergency presentations. For almost all cancer types, one year survival rates were much lower for those presenting as emergencies than for those presenting via other routes (NCIN – Routes to Diagnosis report).

The largest number of prostate cancer cases in the general UK population is diagnosed in those aged 70-74 and the highest incidence rates in the 75-79 age group. (Based on 2006-2008 data).

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Opinion TB in ethnic minorities

The past 20 years has seen a dramatic increase in cases of TB in the UK. Black and minority ethnic (BME) communities are disproportionately affected.

In 2009, 72% of the UK’s 9,040 TB cases occurred in non-UK born people; 78% were found in non-white ethnic groups.

Though rates of TB are increasing in the UK it is still uncommon. Many people think that TB has been eradicated in the UK and would not recognise the common symptoms – an ongoing cough, fever, nightsweats, weight loss and loss of appetite. At the same time, many health care professionals have little or no experience of the illness. Stigma and misconceptions about the illness – beliefs that TB is not curable, or a sign of HIV – are common, particularly in migrant communities that may have seen people dying from

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TB in their home countries. It is essential that public and professional awareness is raised, as without early diagnosis and treatment of TB the risk of long-term damage to an individual, and of TB being passed on to others, increases.

Third sector organisations working with BME communities are well placed to help address stigma and misconceptions about TB – they are known and trusted by the communities they serve. This is one reason why the third sector was identified in the Department of Health’s (DH) TB Action Plan as key partners of Primary Care Trusts and local government to deliver local TB awareness. Third sector organisations can get the support they need to do this, through The Truth About TB programme (www.thetruthabouttb.org) which has been developed by TB Alert as the DH’s lead

partner in delivering TB awareness.

A major part of this programme is TB awareness training for third sector organisations, to give them the TB knowledge and skills to raise awareness of TB within at-risk communities. TB Alert’s Community Development Officers will also develop local TB partnerships that bring together trained third sector organisations with statutory sector partners, to help advocate for TB services that meet their client’s needs and to access funding to develop TB programmes. By doing so, the programme will have a direct impact on people like Joe who suffered irreparable damage to his health from TB after delays in diagnosis – delays that could have been avoided with better public and professional awareness of the illness.

For more information about The Truth About TB programme, please contact Elias Phiri, Head of Awareness Programmes on 07914 855206 elias.phiri@tbalert.org The project website is: www.thetruthabouttb.org.

For more information about TB Alert please visit: www.tbalert.org

Peter Davies is the Secretary, of TB Alert and a former Consultant Chest Physician at Liverpool NHS Trust

The day I met Joe The first time I met Joe (not his real name) I was really moved by the brave way he was facing severe disability. He was lying in a hospital bed paralysed from the waist down yet put on a smiling face as he told me his story. He was a forty year old Congolese and had come into the UK about five years previously with his family. He worked as a carpenter to support his wife as she looked after their four children.

A few months before I met him he had been troubled by recurring pains in the back and shoulders.

He had been to see his GP several times and even been admitted to the local hospital for a night via the A and E department. He had had back and chest x-rays but no clear diagnosis had been made.

He was given pain killers and told to go home. He was told that the pain would eventually go.

Then one day, about four months after the pains had started, he

simply could not get out of bed.

Not only was he unable to move his legs at all, he had lost all sensation from the mid abdomen downwards. He had lost control over his bladder and bowels. In short he had become a paraplegic, overnight.

He was admitted to hospital as an emergency and after further investigations, including an operation on the spine, he was diagnosed as having tuberculosis of the spine. But in Joe’s case the destruction to the bones had gone on so long, and was so extensive, that one part of the spine had slipped on the other cutting his spinal cord in two. So he had become paralysed.

The sad thing is that even though TB has now been diagnosed and is being treated properly, the treatment at this stage can only stop the extent of the bone destruction getting worse. The bones of the spine can regrow but

the spinal cord will not be rejoined and it is very unlikely that he will ever walk again.

Joe’s case is an example of how a serious case of tuberculosis can be missed if it is not considered by the doctors who he goes to for help. Had he been diagnosed in time before the spinal bones became badly damaged he would have been cured and no damage to the spinal cord would have happened.

I had a chance to look at his x-rays and, as a Chest Physician, I could see that the x-ray two months before he became paralysed was not normal. The combination of a Congolese immigrant with an abnormal chest x-ray and back pain should have alerted his doctors to the possibility of spinal tuberculosis.

Had this been done Joe’s story might have had a happy ending.

Raising professional and public awareness is key to this.

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Report

Who do you engage and at what level do you engage them? How do you define and delineate communities?

Who interprets the findings?

Giving marginalised and disadvantaged groups a voice – the SpeakOut Network The increasingly complex nature of health and social problems, coupled with the disappointing interventions that have often been borne out of outsider attempts to define and fix such problems has led to wide demand for increasingly collaborative approaches to both the research and delivery of health and social care programmes. Programmes should be community based rather than community placed; and research should not only generate knowledge but also promote social change 1.

The relationship between the levels of community engagement and active participation in programmes on the one hand and improved health and social outcomes on the other 2 clearly under-pinned the NICE’s public health guidance on the use of community engagement to reduce health inequalities 3. And whatever you may think about proposals to reform the health service, it is clear that even the current administration believes that increased participation is essential for the achievement of improvements in health outcomes, increasing satisfaction with services, improving adherence to treatment and achieving reductions in costs 4.

Involving and engaging members of the public in initiatives designed to improve the quality of health and social care is not easy however. Who do you engage and at what level do you engage them?

How do you define and delineate communities? Who defines the questions that get asked? Who decides what methods are most appropriate? Who interprets the findings? How do you maintain rigor? How do you identify and provide appropriate support?

SpeakOut is an example of how the engagement of marginalised and disadvantaged groups can be effectively facilitated. Created to support the Care Quality Commission in the discharge of its regulatory 36

speak out

functions and managed by the School of Social Work at the University of Central Lancashire 5, SpeakOut is a national network of more than 80 marginalised and disadvantaged community groups. Its members come from all over the country and include people from minority faith groups, Black and minority ethnic groups, refugees and asylum seekers, people with a range of physical disabilities, lesbian, gay and bisexual people, mental health service users, people with learning disabilities, people with specific dietary needs, older people and Gypsy and Traveller communities.

Through the network, members are able to: • •

• • • • • •

•

Provide access to hard to reach populations Advise on the construction and planning of events, consultations and services Review documents Comment on policy Undertake direct consultation Provide representation on advisory groups Provide training Help other organisations meet the requirements of equalities and human rights legislation Provide direct feedback about patient experiences

Last year members collaborated with the Care Quality Commission on 8 separate strands of work, including the proposed Excellence in Adult Social Care Award and the new HealthWatch developments. In addition, members contributed a range of other initiatives including the Experts by Experience Programme, and the Inclusion, Equality, Diversity and Human Rights Programme.

Jez Buffin, Principal Lecturer, School of Social Work, University of Central Lancashire

(1) Minkler M and Wallerstein N (2003) – Community-Based Participatory Research for Health, Jossey-Bass, San Francisco (2) Popay J (2010) Chapter 10: Community empowerment and health improvement. In Morgan A, Davies M, Ziglio E (Editors) (2010) Health assets in a global context: theory methods action. New York: Springer.

(3) NICE public health guidance 9 Community engagement to improve health - http:// guidance.nice.org.uk/PHQ9 (4) DH (2010) NHS White Paper - Equity and excellence: Liberating the NHS (5) http://www.uclan.ac.uk/ schools/school_of_social_ work/index.php

If you would like more information, contact speakout@uclan.ac.uk.

Go to Youtube and search for ‘Community Voices Speak Out’ to watch a video explaining the work we do.

Research reviews

by Health Equality Library Portal

Domestic abuse: everybody’s business?

Publisher: NHS North West Author: Faye MacRory Published date: 1st Feb 2012 A presentation setting out the key role the NHS can play in keeping women safe, particularly in pregnancy which is a known trigger for violence. The presentation also includes the results of a two-year pilot project, PATHway (Positive Action Through Health) which provided an Independent Domestic Violence Advisor at St Mary’s Maternity Hospital. As well as an improved service for vulnerable and minority ethnic women, there were clear cost savings from the project The presenter was Faye MacRory, Consultant Midwife, Central Manchester University Hospitals Foundation Trust.

The NHS E&D Leadership Competency Framework Publisher: NHS North West Author: NHS North West Published date: 12th Sep 2011 This project was developed in a partnership between NHS North West and the Department of Health. It aims to offer an holistic, comprehensive and evidence-based overview of the competencies required to support improved equality in health outcomes and workforce diversity across all of our communities. The Framework was developed:

Human Rights Review 2012 - How fair is Britain?

Publisher: The Equality and Human Rights Commission Author: The Equality and Human Rights Commission Published date: 5th Mar 2012 An assessment of how well public authorities protect human rights in England and Wales. The review identifies 10 key areas, where public authorities can improve human rights protections.

The Cost of Gender Reassignment Publisher: Jane Fae Ozimek Author: Jane Fae Ozimek Published date: 3rd Jan 2012 This paper reviews the standard procedures for gender identity treatment available within the NHS. It sets out what a service user with gender identity issues is likely to be offered within the NHS. Cost information is provided, together with sources for that information.

The broad conclusion is that treatment costs are highly influenced by whether a trans service user (especially male to female cases) undergoes surgery or not. Although this report was produced initially to help educate journalists and respond to / prevent inaccurate reporting, it will also be of considerable value to commissioners needing to understand the genuine cost profile of this area of medical treatment.

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• To provide senior management teams with a tool to help them to ensure that they have (between them) the right skills and expertise to excel in leading their organisations to successful Equality and Diversity (E&D) outcomes • To provide individual managers charged with E&D leadership with a clear picture of their role and the expectations attached to it, so that they can plan their own career development • To provide the NHS with a consistent national approach to developing the skills and expertise needed to deliver healthcare in a way that takes proper account of issues of equality, diversity and inclusion – and the outcomes required by the Equality Delivery System

Good Engagement Practice for the NHS Publisher: NHS Midlands and East Author: Maqsood Ahmad OBE; Dr Habib Naqvi et al Published date: 10th Jan 2012 This good engagement practice guide has been developed by the NHS for the NHS. There are already many examples of good engagement practice in NHS organisations right across the country. The authors have brought together some of these examples and have distilled key principles for good engagement which we present here in a clear, concise, accessible way. Engagement refers to the involvement of patients, carers, communities and staff, giving equal importance to each of the protected characteristics - in the planning, design, development, delivery, monitoring, review and improvement of the workplace environment and health services.

Commissioning for Community Inclusion: Eight Essential Actions Publisher: National Development Team for Inclusion Author: Catherine Wilton Published date: 31st Oct 2011 Commissioning for community inclusion is a way of approaching public sector commissioning which helps to ensure that a broad range of opportunities and supports are available for disabled and older people. It is about linking people to their local communities and supporting them to make the most of the natural supports around them. The Eight Essential Actions give commissioners a brief rundown of the types of things to prioritise to ensure that older and disabled people get the chance to build support networks, and friendships and feel valued and included in the local community.

Forced Marriage, ‘Honour Based’ Violence and Violence in Intimate Relationships: Setting the Scene Publisher: Imkaan Author: Anum Mouj Published date: 1st Feb 201 Black, Minority Ethnic and Refugee (BMER) women often face a double disadvantage in terms of a poor service that victims of violence generally receive and because their specific needs are not taken into account.

BMER women are generally treated as one group with similar needs, as opposed to individuals from different communities with differences in language, histories and service needs. This presentation outlines the links between forced marriage, ‘honour-based’ violence and violence in intimate relationships, and includes some useful definitions and characteristics, and discussion points on cultural roots and drivers

Missing Link: a joined-up approach to addressing harmful practices Publisher: Imkaan Author: Sumanta Roy; Dr Patricia Ng; Ikamara Larasi Published date: 1st Sep 2011 This study aims to fill a gap in our knowledge on the needs of black, minority ethnic and refugee (BMER) women experiencing harmful practices (HPs) in the Greater London area. The findings will help commissioners, funders, policy-makers and frontline practitioners to improve the way London responds to HPs. The study was carried out between December 2010 and March 2011. The study was commissioned and funded by the Greater London Authority

Hidden in Plain Sight Publisher: Equality and Human Rights Commission Author: Equality and Human Rights Commission Published date: 12th Sep 2011 A newly-published inquiry from the Equality and Human Rights Commission reveals that hundreds of thousands of disabled people regularly experience violence and bullying, much of which is going unrecognised by public authorities

Equality Delivery System: Setting priorities for patients, carers and service users Publisher: NHS North West Author: Health Solutions Published date: 3rd Oct 2011 A tool to help with stakeholder consultation and involvement in the new Equality Delivery System, using an easy to understand scaling system.

The Health Equality Library Portal is NHS North West’s central repository for up-to-date equality and diversity information.

Its purpose is to: • support the production of effective evidence based equality • analyses of all strategies, policies, plans or activities • identify knowledge and evidence gaps • share best practice and policy material and prevent unnecessary duplication of effort • support equality and diversity leads in their roles

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Long Roads is an educational resource to support educators in teaching young people about the heritage of the romani people To order a pack, please visit the BHA website - www.theBHA.org.uk or phone 0161 874 2152 or email info@theBHA.org.uk

c_pp_r is something the roma slaves used to make things from for their owners m_s_c__n is one of the professions the slaves used to have