Gypsy, Roma and Traveller healthcare: How can primary care serve this group? 

People from Gypsy, Roma and Traveller (GRT) communities can find it difficult to access to primary care services, despite making up one in 200 (0.5%) of the UK population.

Engaging people in these groups, and providing consistent follow-up care, can be complex for healthcare teams given the nomadic lifestyle that some travellers have.

Some GRT people who seek to access primary care services also say they may be met with stigma, which erodes trust with this already hard-to-reach population.

With the government’s shift towards digitally led, community-first healthcare, Madeleine Anderson asks what can be done to better engage these groups, which value close-knit family connection, while facing levels of digital exclusion and a lower literacy rate than the general population.

The 2021 Census puts the UK’s GRT population at around 200,000, but the charity Friends, Families and Travellers (FFT) believes this is an undercount, given the remote and transient sites that some travellers still live in.

According to the charity, nearly three-quarters (74%) of GRT people now live in bricks and mortar homes. Despite this, many GRT people still say they have been denied GP registration due to misunderstandings about the requirements for accessing primary care services in the UK.

Even GRT people who have a permanent residence can be denied registration, FFT says, perhaps because their campsite isn’t given a formal address, despite existing for a decade or more in some instances.

In fact, the last Race Disparity Audit in 2017 found that 14% of GRT people are ‘far less likely’ to be satisfied with access to a GP than white British people, at 60.7% compared to 73.8%.

They are also less likely to be satisfied with the service they receive, at 75.6% compared with 86.2% for white British people.

Refused access to primary care

In 2021, during the Covid crisis, FFT rang 100 GP practices asking to register as a member of the GRT population. Overall, 74 out of 100 surgeries approached between March and April 2021, seemed to differ with NHS England guidance by declining to register the nomadic patient.

NHS guidelines state that there is no requirement for patients to prove their identity, address or immigration status to register with a GP either via post or online.

But FFT believes there is real potential for GP services to better engage the GRT community, especially because of the discrete and private healthcare provision that practices can offer through appointments.

The charity also suggests that the embedded nature of GP services is a potential barrier to primary care access, with patients facing a ‘postcode lottery’ where some GPs offer more inclusive, impactful services for GRT people than others.

The risk of missing multiple screenings

The charity FFT regularly hears from GRT people who have been denied GP access and face devastating health consequences as a result.

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One GRT member told the organisation how they had lived on a houseboat for 15 years and regularly had trouble registering with a GP, leading to them missing multiple screenings and developing cancer before getting treatment.

‘This was even a problem post breast cancer surgery when I had a prescription,’ the patient recalled.

They explained that they are worried about ongoing care, saying:  ‘I am a temporary patient at a place near the last camp – they will take me off the books soon, because the camp has moved away. It is really hard to get registered.’

The practice nurse perspective

Alyssa Hale is a general practice nurse (GPN) who works at surgery near a large GRT site. She tells Nursing in Practice how she amends the care she delivers to best engage this population and encourages other practice staff to do the same.

She describes how, even when reception staff registered patients as temporary residents, it is hard for clinicians to provide follow up care, especially when patients had previously seen a different member of staff.

‘They [GRT patients] wouldn’t automatically trust me.

‘Lots of them seem to know very little about healthcare systems, what we can offer and what’s available, and whether something is normal or not,’ she explains.

Writing down notes

Ms Hale says that finding ways to work around digital exclusion is key to preventing patients from attending future appointment. She has had to adapt how she communicates with patients in terms of care delivery and arranging future meetings.

‘Some patients don’t have phones, for example, so instead of being texted for their next appointment I have to write it down,’ she says.

Ms Hale often also writes down notes for patients rather than them taking notes on a mobile phone that they may share with other family members.

This can be especially important for women who are looking to access contraception or menopause care.

‘[Some] Patients want to be able to hide their notes, and I can build trust and confidence with them by helping them to do this,’ she says.

Challenges for menopause and contraception care

Given high levels of distrust in healthcare systems – and stigma that surrounds women’s health – Ms Hale describes particular challenges she finds in engaging patients for smears and other women’s health checks.

For example, she says ‘Younger women don’t come for their smears: it’s very, very rare.’

‘They don’t seem to come for one because they don’t get an invite letter, because we don’t have an address for them, so they don’t come until it’s too late,’ she said.

Ms Hale says it is ‘not uncommon’ for seriously unwell patients to only come ‘once the pain is too bad’.

As well as requiring adapted communication, Ms Hale describes how the women she supports often ask for adaptations to how they receive medication too.

She recalls one woman asking if she could have pills rather than a patch to manage her menopause symptoms, because she preferred to hide the fact that she was taking medication from her partner and wider family members, even though Ms Hale thought the patch would best fit her clinical needs.

‘It’s about balancing best clinical practice with what is the most realistic thing for that patient,’ she explains.

Despite this, Ms Hale says she had found ways to adapt appointments to best engage GRT patients, but described how this had initially frustrated her practice manager who felt she was focusing too much time and resources on one patient group.

‘But actually, we often do need slightly longer appointments to get to the bottom of things,’ she says.

She also suggests that thinking of contraceptive methods that would best suit the cultural needs of the patient, family and community and balancing this with what may work best for them clinically.

Adapting communication

Emma Bray, a GRT community member and FFT health promotion worker, describes the challenge many GRT people face in trying to receive regular post, including letters with appointment dates and reminders.

She explains how many GRT people use visually impaired services so they can access more descriptive information and receive feedback via a phone.

‘It’s interesting that there’s really good areas of practice that work for other areas within the NHS that they’re making use of,’ she said.

She describes how the use of more descriptive and pictorial explanations is helpful for engaging with GRT patients, but cautioned that such approaches must be developed and used with sensitivity.

‘As long as that information is co-produced, I think it would be massively beneficial to gypsies and travellers to have something that resonates with them within a GP practice, particularly when you look at all the kinds of GP practices that refuse service.’

The fear of appointments

For many, their first interaction with a receptionist is a key moment that determines whether they can register with a GP, or whether they feel welcomed enough at the surgery to return.

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Ms Bray recalls a recent experience supporting an older GRT woman at a GP surgery, following three previously unsuccessful attempts to attend an appointment.

She explains how the woman was unable to complete registration at reception as she was unable to use the computers to register and was also unable to write her surname to confirm her attendance.

‘When people are self-referring for appointments; if you miss two or three appointments, then you’re right back where you started, or quite often, you’re off the list.

‘So, I can only see the gap in health inequalities widening unless there’s some real intervention done to improve this.’

‘Patients should have more opportunities to attend drop-in screening clinics, or to nominate a practice for screening because access to regular appointments are so scarce,’ she explains.

Ms Bray described how GRT patients often ‘leave it too late’ when it comes to accessing appointments, because of fear of attending appointments and failure to get an appointment invitation or reminder.

‘Gypsy and traveller patients tend to miss screenings because of various things like no postal address, no access to the new NHS apps and online services.’

‘What then happens is people only access health services when they are close to dying, so it is assumed that something bad will happen if they do visit a health professional,’ she explains.

‘It’s a really scary thing that people tend not to talk about, so for some they avoid a lot of screening for the fear that they might be diagnosed with something, rather than realising the connection to early screening,’ she adds.

She explains how, despite existing as a permanent site for nearly 15 years, Ms Bray isn’t registered as having a fixed address and receives letters very sporadically.

‘If I miss a letter, I then have to know when my smear tests are due, so then I’m in a position where I’m having to phone the GP and they’ll be asking if I have a letter.

‘This happened to me recently, and you’re stonewalled after a point.’

How can GP practices become more inclusive of GRT patients?

Dr Alice Byram is a GP and medical advisor at FFT, and says that adapting care to better include GRT people is vital for building trust and working towards more regular interactions with other vulnerable community groups.

Speaking to Nursing in Practice, she highlights that the move towards digital-first healthcare, for example for online booking, appointment requests and prescription requests, does have the potential to make healthcare more accessible more generally, but that access through this route may be difficult for GRT individuals.

‘I don’t think we’re going to change the digital-first approach, but we have to nuance it.

‘Digital first can still be multi-channel and meet the specific needs of different communities,’ she says.

Ensuring a process of ‘co-creation’ between practices and local groups is key to ensuring a successful move towards digital services that are suitably inclusive.

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‘This move towards digital first is obviously not going to work for everyone, but there’s definitely ways of helping it to work through co-creation, and that is one of the big points,’ she comments.

What needs to change?

Ms Bray believes the NHS should develop ‘clearer guidance’ on how primary care services should build the trust and engagement of the GRT population in England and said involvement with third-party groups like FFT should not be needed to ensure GRT people get the care they need and are entitled to.

‘We’ve had times before when we’ve challenged people that have refused access, like practice managers, but it does always take for an FFT representative or support worker to go into practice and advocate for them, often spending a long time going back and forth on email,’ she describes.

She says it’s a ‘disservice’ to traveller people but also incorrect for practices to overlook their existing or potential GRT patient population.

‘Most GP practices should presume that they have gypsies and travellers either on their books or in their area, because it’s a bit of a no brainer,’ she says.

While the current system ‘is not fit for purpose’, Ms Bray is clear that any attempt to engage the community must start with reaching out.

‘No one’s actually asked us what we need.

‘And every time I’ve done focus groups people say “just ask us”, they know the problems, and they will give you the solutions.’