What are the health inequalities faced by Irish Travellers and how can we overcome them?

What are the health inequalities faced by Irish Travellers and how can we overcome them?

 

In the wake of the global Covid-19 pandemic, marginalised communities are at even greater risk than usual. These include groups like the Irish Travellers, which are so often ignored within policy, or openly discriminated against.

Given so little publicity has been given to this particular group, this blog sets out to explore why Irish Travellers tend to have poorer physical and mental health, and what we can do to change this.

Who are the Irish Travellers?

There are many different groups within the Traveller community. One of the largest is Irish Travellers.

Irish Travellers are recognised as an ethnic group in the Equality Act due to their distinct culture and identity.

Travellers are often characterised by a nomadic lifestyle where they move from one place to another. This is compared with the general population who usually follow a settled lifestyle and live in one place.

However, not all Travellers are nomadic. And even those who are sometimes have to adopt a settled lifestyle due to old age, health needs, or education needs.

So being part of the Traveller community is about more than being nomadic, as Traveller activist, Michael McDonagh, explained in Dr Colm Power’s report on England’s Irish Travellers:

“When Travellers speak of Travelling, we mean something different from what country people [sedentary people] usually understand by it […]. For Travellers, the physical fact of moving is just one aspect of a nomadic mind-set that permeates every aspect of our lives. Nomadism entails a way of looking at the world, a different way of perceiving things, a different attitude to accommodation, to work, to life in general.”

Irish travellers have poorer health outcomes than the general population

Irish Traveller life-expectancy estimates are shocking.

Data from the All-Ireland Traveller Health Study suggest that Traveller men have a life expectancy of only 63 years (vs 78 in the general population). For Traveller women, that figure is 71 years (vs 82 in the general population). This means Irish Travellers die about 11-15 years earlier than the general population.

The gap in healthy life expectancy is even more striking. Irish Travellers will experience 16-17 more years of poorer health than the general population, and they are more likely to be categorised as disabled.

Mental health is also worse among Travellers. 60% of Travellers said that their mental health was not good enough for one day or more in the last 30 days (vs 20% in the general population).

Suicide is a real issue, with a suicide rate for Travellers that is 6-7 times higher than in the general population.

Irish Traveller health is worse for three main reasons.

The underlying reasons for the inequalities we see in Irish Traveller health are multiple, complex and inter-related.

But put simply, Irish Travellers are more likely to develop certain conditions in the first place, have less access to health services, and have low uptake of health services when they are available.

First, social, environmental and economic factors mean Irish Travellers are more likely to develop health conditions.

The Irish Traveller community have many risk factors for developing chronic conditions, such as lower socioeconomic status. For example, unemployment rates amongst Travellers are as high as 80% (vs 13% in the general population).

It’s not only demographic differences at play however. Travellers still have worse health even when these are accounted for, so there are other reasons too.

Discrimination itself has been linked with poor health.

Compounding this, Travellers have many cultural, psychological and environmental factors that can make it harder to adopt healthy habits. For example, over-eating is encouraged through things like catering for a large extended family and chubbiness is seen as a sign of a healthy child.

Travellers often experience racism and social exclusion when they attempt to exercise, for example at gyms. Women in particular have little opportunity to exercise due to traditional gender roles that encourage family commitments.

Mental health can be impacted by the same factors as physical health. On top of this, reasons for poor mental health include poor physical health, bereavement and discrimination. This is impacted further by the stigma attached to mental illness within the Traveller community that can stop those who need help from getting it.

Second, Irish Travellers experience lower levels of access to healthcare.

Regularly moving location can make it hard to engage with health care, whether moves are by choice or enforced due to local regulations.

This is partly because of practical reasons. Most GPs need a permanent address to register patients. Health records aren’t easily and quickly accessible nationally so patient notes often can’t be accessed.

It’s also because constantly changing providers makes continuity of care difficult and it’s easy for people to fall through the gaps of services.

Some of these access issues could be deemed unconscious institutional racism. Pavee Point, an organisation that aims to improve the human rights of Irish Travellers, explains this as

“Processes that consciously or unconsciously result in the systematic exclusion of minority ethnic groups. It is most visible in the inequitable outcomes for minority ethnic groups from the policies and practices of organisations and institutions throughout society.”

Third, there’s usually low uptake of health services among Irish Travellers.

Irish Travellers often don’t want to engage with health care because of a fatalist attitude towards treatable health conditions, low expectations around good health, and a common belief that health care professionals cannot substantially improve health.

In a 2010 study, only 41% of Travellers “completely trusted the health care professional treating [them]” (vs 82% in general population).

There’s also a common attitude towards close-knit extended families taking care of health problems themselves.

Then when Travellers do want to engage with health services, it is made difficult for them by a system and professionals who don’t understand or cater for their needs.

This is often compounded and perpetuated by negative experiences and high levels of overt racism. For example, receptionists can be a barrier to get past and health professionals can have low expectations of the Traveller patient and their health.

Effort is needed from all sides to improve this

Policy is often integral to reducing inequality. Yet, like other itinerant groups, Irish Travellers are often forgotten about in health care policy.

Even though they are a recognised ethnic group, Travellers are not mentioned in most government initiatives. This reveals a woeful oversight.

Simplified Data believe that everybody should have access to evidence-based medical treatment. This mission ties in with Justice Studio’s understanding that health disparities like those witnessed in Traveller populations are issues of social injustice. We know that health outcomes are not necessary facts of biological makeup, but result from social, economic, and environmental drivers as well.

For groups who are at the margins of society, disproportionate health risks are embodied, lived experiences of broader social and political injustices. To really see improvements in health, it will be vital to break down some of the barriers between Irish Travellers and health professionals.

This will need to be written into health policy, and will require more education for health care professionals around the specific health needs of Travellers. There are examples of fantastic work being done to improve Traveller health that are mostly led by or operate in partnership with the Traveller community.

The complicated problem of Irish Traveller health will require complex solutions. But the gains that could be made by reducing the huge health inequalities experienced by Irish Travellers would be well worth the effort.


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Danielle Bodicoat is an independent medical statistics and writing consultant at Simplified Data and an Associate Consultant at Justice Studio. She specialises in health-related evidence reviews and meta-analysis. You can find out more about Danielle and her work on her website.

Featured image: An Irish Traveller in Dublin watches neighbouring children play from her trailer window. Photobymack 2011.

Justice Studio Research: The impact of Covid-19 measures on older adults in self-isolation

Justice Studio Research: The impact of Covid-19 measures on older adults in self-isolation

“It’s just behaviours”

Last week, Dr. Deborah Birx (who is leading the US response to combating the Covid-19 pandemic) appeared on stage in front of the press, flanked by illuminated images of bell curves. Pointing to the flatter of the curves, her message was clear: reducing the rate of new Covid-19 infections is key to reducing overall loss of life. This insight, informed by epidemiologists and experts on coronavirus transmission, has become part of the pubic lexicon as citizens around the world make efforts to #flattenthecurve.

Birx’s key point, however, was not medical advice in the classic sense. Rather, she reiterated, “It’s communities that will do this. There’s no magic bullet. There’s no magic vaccine or therapy—It’s just behaviours.”

Dr. Birx’s revelation comes as no surprise to social and behavioural scientists, who have long catalogued the behavioural and contextual markers of disease patterns within populations. Today more than ever, this attention to the role of human behaviour in the spread of novel coronavirus is a stark reminder that there is no such thing as a ‘natural’ catastrophe.

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Answering the call to better understand behaviours during the Covid-19 pandemic, Justice Studio have created a pioneering piece of action research, that we would like your help with.

Chronic loneliness isolation and health outcomes

Human behaviour—specifically, social networks and socialisation—has been at the center of many health-related studies in the past decade. In 2003, scientists at the University of Pittsburg isolated 304 adult volunteers in hotel rooms, then later exposed them to a virus. They discovered that those with a greater number of social contacts were less likely to develop symptoms. Similarly, another study at Brigham Young (2010) found that loneliness could equate to the health risks of smoking 15 cigarettes per day.

But what happens when loneliness is a shared experience? Whereas previously, loneliness defined an individual’s experience in contrast to a larger group, today we are all isolated together. Is simultaneous loneliness qualitatively different? Will novel coronavirus entail novel social impacts? As Jonathan Kanter, director of Center for the Science of Social Connection at the University of Washington, recently explained, “We’re in a massive social experiment and we don’t know what extent this earlier research applies.”

At Justice Studio we are determined to take a critical, socially conscious look at these issues and find ways to help in real time. Governments and key decision-makers are grappling with this crisis, looking for ways forward and are open to evidence; we need to provide it. After all, social conditions like isolation, inequality, and lack of access to resources aren’t inevitable.

So, in order to begin to understand these crucial behaviours, we have launched an action research project to investigate the impact of Covid-19 measures (self-isolation, social distancing) on adults aged 70+ with underlying health conditions. Our research has a number of elements including:

  • Literature and data review
  • Peer research by 60+ volunteers interviewing a cohort of older people
  • Interviews with organisations supporting older people

In addition to this, we are surveying a wider sample and will be opening local phone numbers with voicemail boxes to capture phone-in responses. We believe that it is crucial to think creatively and resourcefully when switching to virtual research methods, keeping in mind the different populations that we will be less able to reach in this way.

We see several potential key benefits from this research:

  • Providing evidence in real time (action research);
  • New expertise around gaps in medical/social knowledge;
  • Practical insights published and shared with key decision-makers and frontline workers;
  • Exploring virtual, or non-co-located research methodologies with harder-to-reach populations;
  • The act of interviewing as an aid or intervention itself.

Now we could really use your help. We are recruiting interview participants in the USA, UK, and in Spain who are 70+ and with an underlying health condition. Please spread the word to anyone you know who may be eligible and interested. Recruitment closes at midnight on April 13th.

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June

Why is health a social issue?

Why is health a social issue?

Nearly ten years ago I became passionate about health inequalities when I read Fair Society: Healthy Lives, Professor Sir Michael Marmot’s review of the most effective evidence-based strategies for reducing health inequalities in England.

Now, as the corona virus pandemic threatens to cause the worst health and societal outcomes for the most vulnerable in recent times, this seems especially pertinent.

The strategies of Marmot’s 2010 review were far-reaching and took a lifespan approach to health inequalities. The highest priority in the review were initiatives aimed at maternity services, child development and parenting to ensure that all children got the best start in life.  But older people were not forgotten and health services that promoted the independence of the elderly were also championed.

The ambitious recommendations considered every aspect of life that can impact on health. From establishing minimum incomes in order to reduce the social gradient. Right through to policies aimed at reducing the impact of climate change to sustain and create environments where people can flourish.

This approach is crucial now as we live through the pandemic.

What does it mean in the current crisis?

Statistics published in the recent ten year review of the original report – Health Equity in England: The Marmot Review 10 Years on make for a shocking read. In general, since 2010, improvements to life expectancy have stalled, and alarmingly even declined for the poorest 10% of women.

The ten year review provides little analysis of why poorer women may experience worse health inequalities. However, the British Medical Association already recognise that the healthcare system may not be responsive to biological and societal gender differences. Gender-based health inequalities may exist because of the impact of unmet needs relating to gender-based violence or problems with reproductive, gynaecological and maternal health services.

Women from deprived areas and communities are already at a significant disadvantage. This coupled with the burden of roles that women are traditionally expected to hold in society, may mean that they are disproportionally affected by the current crisis.

For example, a recent report published by Autonomy reported that three quarters of the people working in jobs most at risk of contracting Covid-19 are women – this includes nurses, carers and home-carers.

In general the health gap has grown between wealthy and deprived areas. One aspect of this is the link between deprivation and access to healthcare services.

Digital exclusion. is a significant barrier to accessing health and social care services, information and support is being highlighted during the COVID-19 pandemic. Digital exclusion particularly affects  economically inactive, disabled and older people.

In a recent blog for the Joseph Rowntree Foundation, the Addressing Poverty Through Lived Experience Collective call for, ‘the Government to find practical solutions to cross the digital divide and introduce free wifi for vulnerable low-income groups.’

Cancer care and inequalities

During the pandemic, those with existing conditions will face greater risks. In particular, people with cancer may have reduced access to important treatments.

Before the COVID-19 outbreak we knew that the social gap for lung cancer survival was widening. In other words, socioeconomic status is becoming a stronger predictor of whether or not a person survives lung cancer. This could be exacerbated by this crisis -survival is linked to earlier diagnosis, which requires access to screening and diagnostic services.

In general, people in underserved communities already face multiple barriers to accessing the health services they need – relating to practical, financial and geographic factors.

This also includes racial and cultural differences. For example, black and minority ethnic patients report more negative experiences of cancer care than white ethnic groups. Generally it’s likely that these barriers will increase and negative experiences may worsen – The Runnymede Trust predicts that the corona virus may increase race inequalities,

 What can be done about health inequalities?

The NHS long-term plan, published in January 2019, prioritised health inequalities and made further promises towards tackling the shocking gaps between health outcomes for different social groups. The plan particularly focused on the health behaviours underpinning ill-health – smoking, poor diet, high blood pressure, obesity, and alcohol and drug use.

However, it seems that it missed something by blaming individual behaviour and not addressing the structural inequalities we face in this country. During the pandemic, individual behaviour has been touted as a ‘cure’ for COVID-19 –  stay at home to save lives.

Whilst this is important it may again overlook inequities in society that may make spread of and recovery from the virus worse. For example, staying at home is not an option for everyone – what if your home is unsafe or at a very basic level you do not have a home?

In his 2020 review, Marmot called again for, ‘a national strategy for action on the social determinants of health with the aim of reducing inequalities in health. ‘ This has been supported by the Royal College of Physicians who have urged the prime minister to accept all of the report’s recommendations and to go even further with policies to address health inequalities across the country.

This is even more vital now.

 A first step is to highlight the experiences of underserved groups. Justice Studio and I work to ensure equal access to health by including groups of people who might otherwise be overlooked within health system research. For example, for Prostate Cancer UK, we highlighted the  needs of black and minority ethnic patients and their supporters as well as men who identify as gay and bisexual.

For Anthony Nolan we uncovered specific difficulties for patients from disadvantaged backgrounds in returning to work. Finding links between lower education levels and unemployment post-stem cell transplant.

Justice Studio is now conducting research into the experiences of older people with underlying health conditions during the pandemic.

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Health is a social justice issue      

Keeping social justice at the heart of health research and service development, will help work towards ending broader social injustices. To ensure everyone can lead as healthy lives as possible.

I hope that policy makers now more than ever heed Marmot’s call for social change to ensure health change. If so, then in another ten years’ time, not only will we be met with more positive statistics, but a -more socially and economically just world will be reflected in our very bodies and wellbeing.


Anneliese Levy is a Justice Studio Associate and health communications specialist. More on Anneliese and her work can be found on her website.

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Anneliese

Equality and Justice Alliance Forum February 2020

Equality and Justice Alliance Forum February 2020

Last week I was at an activist forum in the beautiful location of Seychelles. LGBT+ and women’s rights campaigners from the Pacific, the Caribbean, and Africa gathered together, under the umbrella of the Equality and Justice Alliance (EJA), to talk, share and laugh, in a very nice setting indeed.

The tropical island location has not gone unnoticed, with a sense of guilt, by the participants. There were many concerns that people might judge them for being in such a typical holiday destination, and particular worries of being judged too privileged by those from their home countries. They were worried that it might be seen as too nice for a bunch of human rights activists that, what, I guess feel they are meant to suffer.

It is sad that these tireless individuals, who face death threats, sexual harassment, and the anxiety that accompanies not being able to be with the one you love legally, feel that they somehow don’t deserve to work in a comfortable location. I’m pretty sure that the attendees of Davos do not have these sorts of conversations with each other. There is a certain entitlement in those circles that is clearly not present here.

This forum is work in any case, and arguably much more impactful than what goes on at the World Economic Forum. The EJA was set up as a two year alliance of partners: the Human Dignity Trust who fight for the decriminalisation of consensual same-sexual activity; the Kaleidoscope Trust who uphold the rights of lesbian, gay, bisexual and trans (LGBT) people;  Sisters for Change combatting violence against women and girls through legislative reform; and the Royal Commonwealth Society who champion human rights, equality, and democracy across the Commonwealth. These partners have been working across the globe countries to specifically target the laws that discriminate against LGBT+ people and women.

But let’s not forget that these gender discriminatory laws were instruments of British imperial patriarchy. So, the fact that the donor is the FCO seems fitting, but even potentially hypocritical. I think it’s the very least they can do. Whilst Britain has signalled some regret, no clear apology or unequivocal recognition of the damage of imperialism and the discriminatory gender laws and legal structures that it left behind, has been made. There is still a public un-knowing about where this legal discrimination came from, both in Britain and across the Commonwealth. The history needs to be better understood and acknowledged.

These activists are doing a brilliant job to work towards equality and legal reform. The Live and Let Live campaign just launched in Belize on TV, twitter and Instagram is a campaign promoting inclusion by raising the voices of those who support those who suffer discrimination. The #Reform53 campaign is a youth led movement to compel Commonwealth leaders at the 2020 Commonwealth Heads of Government Meeting (CHOGM) to reform laws that discriminate against women and LGBT+ people. Before EJA, amazing work was being carried out by the independent civil society groups, such as Equality Bahamas, and V-Pride in Vanuatu.

To spread activism knowledge a whole load of research has been produced thanks to the EJA. Good practice, guidance, research and mapping studies have been conducted, such as on creating compliant sexual offences laws, a review of anti-discrimination law and the series launched at the Forum that our own research was part of: Building Stronger Equality Movements, which encompassed research on managing backlash; promoting intersectionality; and increasing intergenerational solidarity.

For our research, which focused on intergenerational activism, we interviewed younger and older activists across ten commonwealth countries such as Fiji, the Bahamas, Botswana, Nigeria and Uganda. They told of the challenges and benefits of working across the generations. Clearly, there is a need to have the wisdom of the older activist generation; communicating the history of what has gone before can benefit younger activists who then know where they have come from, and what needs to be done next. Younger activists can then drive the movement into the future, standing on the shoulders of their forebearers, and creating more strength and sustainability.

Given how long women and LGBT+ people have suffered under discriminatory laws and structures imposed by Britain, how much work the activists do, and how little recognition they get, I don’t even think they should have to justify a meeting in a nice location. They deserve this, and so much more. I’m sure they would swap it to be able to walk down their own streets without abuse. If it wasn’t for these people constantly facing danger, getting up to challenge prejudice and battling in court and against Parliament, many of us would suffer so much more than we realise. Activists’ wellbeing should be a much higher priority to us and to themselves. Many of the participants are volunteers so it is hard for them to even get here or get time off. They deserve what little respite there is.

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Marianne