What are the health and hospital needs of the Traveller community? Does it constitute a separate group at all? Radhika Holmström investigates misconceptions, preconceptions and language.
How are the Gypsies/Travellers/Romani groups defined, and what are their specific health needs? There is a fair amount of work in this general area. From some perspectives, this is a specific group and/or set of groups with distinct health issues; from others, framing a conversation in this way fuels, rather than extinguishes, the stereotypes.
Unpicking the components
A recurring issue is the conflation of the three groups into one – all of which are subjected to the stereotypes of ‘gypsies’. One is the romantic idea of caravans, Romany wisdom, ancient roots and life under the stars. The other is the idea that Gypsies (certainly Travellers) are petty criminals who park illegally, steal and live in filth. TV programmes like My Big Fat Gypsy Wedding have built on this cliche, but underlying prejudices against the community are long-standing.
In the UK today, there are essentially three populations, explains Yaron Matras of the University of Manchester:
- ‘Irish and Scottish travellers, who have their own customs; most families have not been travelling permanently for more than a generation, but they may do some travelling.
- Romani Gypsies, who go back to Roma immigrants around the 16th century; they too have their own customs and vocabulary, and they are also itinerant. They are historically connected to the European Roma.
- East European Roma, who are completely different; their only real connections with Romani Gypsies are some cultural ones, and some vocabulary.
this is a specific group and/or set of groups with distinct health issues; from others, framing a conversation in this way fuels, rather than extinguishes, the stereotypes.
This last group has expanded dramatically since the 1990s and may number as many as 300,000 people.’
Matras feels strongly that the conflation has generated its own impetus. ‘Roma kids are told “you are travelling Gypsies”, and I’ve seen teachers who get these Roma kids to draw pictures of caravans, and call their language “Gypsy”, and they in turn repeat it.’ The confusion has been compounded further since the 1990s, he explains, by putting these children and their families in touch with the ‘travelling education services’ local authorities have run for decades now, which provide support for children who are travelling and missing school.
‘Some of these services had responsibilities for international new arrivals, so it wasn’t unreasonable to ask for the same support for Roma children. But a whole concept of talking about “Gypsies, Roma and Travellers” developed, including within international organisations like the Council of Europe. There’s now a whole industry of research and policy with the remit of looking at Gypsies, Roma and Travellers. There’s also been a huge proliferation of articles on Roma and healthcare. But whichever way you break it down, the only common denominator is the discrimination people face when they are seen as “Gypsies”.’
Not everyone agrees, but it is certainly useful to take the different elements separately in order to identify specifics that apply to hospital care. Some reports look at the experiences of Travellers, possibly with the addition of people who are more recently itinerant (such as New Age Travellers); some of Gypsies and Travellers; some of Romani people; and some look at all three. Most of the work focuses on primary care, but because of difficulties negotiating primary care many people end up turning to secondary care; and the overall conclusions are of poor health, along with (and/or as part of) general economic deprivation.
According to the 2011 census, around a quarter of Gypsy and Traveller people in the UK are still living a broadly nomadic way of life, and this is often very insecure, as there is a chronic national shortage of Gypsy and Traveller sites in England; 16% of caravans in the July 2017 national caravan count were on unauthorised land, largely as a result of this shortage, and this means they are frequently evicted.
‘That creates a real problem with continuity of care’ explains Sarah Sweeney, the communications and health policy coordinator for Friends, Families and Travellers (FFT), which works with all Gypsies and Travellers regardless of ethnicity, culture or background. ‘If people are evicted and don’t know where they are going to go next, it creates potential problems with sticking to appointments; if you leave the stop and go to hospital, you may be evicted while you’re away. In fact, if you know you’re going to be moving on there can be an issue with being referred into secondary care in the first place.’
There are also broader cultural issues. One of these is simply literacy: 45% of FFT’s client base has no or poor literacy, so it’s essential that they receive information in a form they can understand. Many people come with others, partly because it’s a way to get access to care, and partly because there is a tradition of support from the extended family. ‘It’s good to have a conversation about that early on, and to support that.’
Underpinning all this are assumptions and stereotypes about Gypsies and Travellers; and those are pervasive enough to assume that at least some health professionals will share them. ‘The Equality and Human Rights Commission’s recent social barometer of prejudice and discrimination found that the most common negative issue was towards Gypsies and Travellers. It’s very important to ensure that you’re giving them exactly the same care that you’d give anyone, and challenge any colleagues who are giving different treatment.’
Mental health is a huge issue in the community, but physical health is also a concern; while Dr Adrian Marsh, who compiled and wrote Stories of Health and Wellness amongst Romani and Traveller Communities in Wales, notes that sites (both official and unofficial) are often near busy roads, which leads to a high rate of accidents.
In terms of secondary care, Dr Patrice Van Cleemput explains that many Gypsies and Travellers present late, so that their conditions are likely to be more serious. ‘There’s a huge fear of cancer; [and] because people tend to present late, they don’t encounter many people who have long survival rates; it’s not in their experience. In fact whatever the condition, they will have a real fear of death because so many people within the extended family go to hospital and die.’
Mental health is a huge issue in the community, but physical health is also a concern
Apart from problems with accessing primary care, another reason why people often arrive directly at A&E is because this is seen as more likely to lead to a ‘proper examination’. ‘Gypsies and Travellers aren’t usually satisfied with being talked to without being tested. Investigations like X-rays prove, to them, that someone is looking at what is wrong with them. A verbal history isn’t considered being taken seriously or thoroughly investigated.
That fear, obviously, presents in many different ways, and aggression or being withdrawn. Furthermore, anything to do with sexual health – or even pregnancy – isn’t openly talked about: women in particular are very private and prefer not to see a male doctor. Phrase things gently, and be aware they don’t find those things easy to talk about.’
Marsh and Dr Van Cleemput also pick up Sweeney’s points about patients often attending hospital with family. ‘There are two big reasons for this,’ Dr Van Cleemput explains. ‘One is the obvious support, of speaking for the patient; but also, if someone is thought to be terminal, it’s really important for the whole family to come and descend. So people do come in a small group to appointments – particularly women – which is sometimes seen as intimidating, especially if they are demanding procedures that haven’t been produced. If someone’s on a ward, a lot of people will come to visit them. Try and find someone within the family – there’ll usually be someone – and ask if the communication can go through one or two people, rather than everyone.’
That insistence on a ‘proper examination’ is obviously reinforced by the expectation that they will be treated less well than other patients. ‘Travellers have said to me: “I can’t speak to them properly. I try to put on a posh voice so that they’ll listen to me.” They pick up very quickly whether or not they are being “respected as people”. Any suggestion that they’re being looked down on, or treated with irritation, is perceived as being because of who they are, whether or not that’s actually the case.’
Some – not all – of the respondents to Marsh’s report certainly show that fear is justified, including people who were discharged from hospital far too early, or not shown the same levels of care as other patients; and one young woman of 18 who underwent a difficult birth without her family in front of male staff (including a male midwife) and then put in a separate ward by herself and not allowed visitors – an experience that was particularly difficult in light of the cultural factors Dr Van Cleemput highlights.
There are a couple of other cultural issues that are in fact at odds with the popular image of Gypsies, adds Dr Van Cleemput. ‘Another thing consultants should, I think, be aware of, is cleanliness. Gypsy and Traveller people are very house-proud and cleanliness matters very much to them. They’ll reject a stained cup – they may even bring in their own utensils. And there is a strong work ethic, especially among men, which affects follow-up. Not being able to work and support your family is a huge issue. They’ll do everything to minimise trauma and “just get on with on with life” – they’ll take their own stitches out and so on.’
Radhika Holmström is a freelance journalist. A longer version of this article appears in February’s Commentary magazine.