6Healthcare
88.Health outcomes for Gypsy, Roma and Traveller communities are very poor compared to other ethnic groups (as noted in Chapter 2). Some problems seem to stem from the consequences of living on Traveller sites or actively travelling, but others stem from direct and indirect discrimination. Several of these issues are common to Gypsy, Traveller and Roma people, while some are more specific to each group. We heard about problems with accessing healthcare services, registering for services due to discrimination or language and literacy barriers, and problems associated with a lack of trust leading to a lack of engagement with public health campaigns. This chapter considers the healthcare structures that are either facilitating or hindering Gypsy, Roma and Traveller people in healthcare settings.
Barriers to accessing health services and discrimination
89.One of the most frequently cited healthcare problems facing Gypsy, Roma and Traveller people is in accessing primary and secondary health services. We heard about problems with registering and accessing GP services, immunisation services, maternity care and mental health provision. The reasons for this have been variously attributed to discrimination, difficulties navigating the NHS, and a reluctance by Gypsy, Roma and Traveller people to seek medical attention until their condition has become very serious. Several submissions stated that Gypsy, Roma and Traveller people, especially travelling families, tend to use emergency services such as A&E rather than any structured approach to healthcare, due to previous poor experiences.124 This leads to disrupted health provision and makes preventative care very difficult to administer.
90.While some CCGs and NHS Trusts show excellent practice in catering for the needs of their Gypsy, Roma and Traveller communities, this is often localised and fragmented. We have also heard evidence of widespread non-inclusion and, in some cases, outright discrimination. Dr Alison McFadden outlined ways in which health services can exclude Gypsy, Roma and Traveller patients:
There are subtle and not-so-subtle ways that people are restricted from registering with GPs. Sometimes it is not having the right paperwork and documentation, or not understanding what is required for proof of address, or simply not being able to provide it. We heard cases where a surgery had asked to see a bank statement prior to registration.125
Although these sorts of occurrences are unacceptable in the Health Service, they seem to be too common.
91.Despite the fact that information and guidance has been available to frontline healthcare staff for some time, discriminatory practices are more widespread than they should be. This leads to a vicious cycle in which a Gypsy, Roma or Traveller individual has a poor experience while trying to access a service, and the word spreads, leading to scepticism and mistrust, which further exacerbate the health inequalities. Dr McFadden gave this as one of the reasons why trust between the Communities and health services is low:
You might have your very close-knit community; your friends or your relatives have had that experience, and then that becomes a story. They’re spread by social media. Historically, there’s even worse, so there’s a cultural memory about health services. So that all has a huge impact on trust.126
Rebuilding this trust is vital, if the NHS is to serve the Gypsy, Roma and Traveller communities well. Some of these strategies will involve including Gypsy, Roma and Traveller people in policy decision-making and some will involve finding more trusted pathways.
Allocation of resources for health services
92.Joint Strategic Needs Assessments (JSNAs) are written jointly between local NHS services and local authorities. The then Department of Health, in guidance from 2011, considered them to be:
the pillars of local decision-making, focussing leaders on the priorities for action and providing the evidence base for decisions about local services.127
There is significant variation in how local authorities across England produce and update their JSNAs. While some are regularly updated and deal extensively with Gypsy, Roma and Traveller issues, this seems to be the exception rather than the rule. Friends Families and Travellers found, in a study conducted in 2015, that less than half of JSNAs included a chapter on Gypsy, Roma and Traveller needs and, of those, less than a third included the needs of Roma people. While it is possible that areas that have not included Roma do not have significant Roma populations, we have heard that 91% of English local authorities have some kind of Gypsy, Roma and Traveller presence.
93.JSNAs tend to rely very heavily on statistical information, which, as outlined in Chapter 4, is severely lacking for Gypsy, Roma and Traveller communities. This presents a challenge for Clinical Commissioning Groups (CCGs) and local authorities. However, even in the absence of data, health services and local authorities must comply with the Public Sector Equality Duty to have due regard for eliminating discrimination and advancing equality of opportunity.128 In this, we have been told, many JSNAs seem to be failing. As Michelle Gavin of Friends Families and Travellers illustrated:
Sometimes it is difficult to find where [Gypsy and Traveller needs] are in a JSNA. It could be under one section or another. There is no equity at all, and there does not seem to be a driver to say, “This is happening.” Some local authorities will just say, “Oh! Have we got a Gypsy/Traveller community?” That is how problematic it is.129
We considered a number of JSNAs as part of the inquiry. The London Borough of Bromley, for example, mentions Gypsy and Traveller people in its most recent JSNA (2018) on children and young people.130 The 2017 report also includes a description of the Gypsy and Traveller population, but only in terms of geographical spread, rather than health needs. Roma are not mentioned.131 Cambridgeshire’s JSNAs are produced by theme, with different reports looking at the needs of different populations.132 A JSNA was produced for the needs of Gypsy, Roma and Traveller people in the area in 2010,133 but this was not repeated. Bath and North East Somerset have produced a number of JSNAs specific to Gypsy, Roma and Traveller communities and, given the high numbers of boaters in their area, have supplemented this work with a report specifically on the needs of boaters in 2016. These JSNAs have been updated over time, with the last update published in 2017.134 As these different JSNAs illustrate, the amount of attention given to the needs of Gypsy, Roma and Traveller people differs considerably, even in areas that are known to have large Gypsy, Roma and Traveller populations.
94.Joint Strategic Needs Assessments that include proper consideration of Gypsy, Roma and Traveller needs are few and far between. We are concerned that many JSNAs are currently not complying with the Public Sector Equality Duty. It is unacceptable that the Communities continue to be overlooked, given that they have the poorest health outcomes of any ethnic group.
95.The Equality and Human Rights Commission should conduct a formal inquiry under section 16 of the Equality Act 2006 into how Joint Strategic Needs Assessments are including Gypsy, Roma and Traveller health needs.
The Role of the Care Quality Commission
96.When we raised the issue of potential discrimination against Gypsy, Roma and Traveller service users by health providers, the Minister told us that the inspection regime of the Care Quality Commission (CQC) had, in her opinion, been very effective in uncovering potential discriminatory practice. She did, however, state that:
We rely on sunlight as the best disinfectant. We rely on complaints to highlight where this is happening. When you are talking about this kind of discrimination and a community that perhaps does not feel it can complain, that is a challenge. Again, we rely on local networks and local voluntary organisations to champion the interests of this group.135
We asked whether the CQC would be able to do proactive work to identify whether, for instance, a GP might be discriminating by virtue of having no Gypsy, Roma and Traveller patients despite being located in an area with a high Gypsy, Roma and Traveller population. In correspondence to us, the Minister replied, saying:
The CQC would take into account if they had evidence that discrimination was taking place which led to low levels of GP registration i.e. that members of the Gypsy, Roma and Traveller community (GRT) were attempting to register with a practice but were unable to. The CQC have produced a guidance note to GP practices around patient registration that covers this and specifically mentions gypsies and travellers. This would affect the GP practice rating in relation to whether services are responsive.136
97.We are concerned that, without consistent input from Gypsy, Roma and Traveller experts, it is very difficult for the CQC to know where to look for signs of discrimination and that the approach set out by the Minister does not go far enough. The CQC’s Experts by Experience programme uses the expertise of people with various medical conditions to inform inspections and support inspectors.137 We see no reason why this model should not be used for Gypsy, Roma and Traveller people.
98.The CQC should expand the programme “Experts by Experience” to look at equalities issues and should include Gypsy, Roma and Traveller people who have the best knowledge of where unequal treatment may be taking place.
The NHS Long Term Plan
99.The NHS published the Long Term Plan in January 2019. The Plan states that the NHS aims to “plan to make the NHS fit for the future for patients, their families and our staff”138 for the coming decade. As a part of this the Long Term Plan seeks to tackle health inequalities, and promises:
NHS England will base its five year funding allocations to local areas on more accurate assessment of health inequalities and unmet need.139
The NHS Long Term plan seems to offer a new opportunity to embed the needs of Gypsy, Roma and Traveller populations into policy-making and ensure that resources are allocated according to those needs. As Minister Jackie Doyle-Price told us, “We have opportunities for intervention, where we can tackle inequality generally.”140 The Long Term Plan also included an Equality and Health Inequalities Impact Assessment, which sets out the NHS’s duties under the Public Sector Equality Duty and shows the engagement that the NHS has had with community groups and stakeholders from various communities. It states that Gypsy, Roma and Traveller people “continue to experience some of the most significant barriers to accessing health care and poor health outcomes”. We are pleased to see this acknowledgement included in the Plan.
100.The NHS Long Term Plan provides welcome clarity on the future of the NHS in England. We are pleased to see mention of NHS England’s duties under the Public Sector Equality Duty. This must be an opportunity to direct resources towards Gypsy, Roma and Traveller communities who have the worst health outcomes of any ethnic group.
101.The NHS Long Term plan also has a useful role to play in making sure that the needs of Gypsy, Roma and Traveller patients are considered and catered for. The plan sets out a new assessment of how Clinical Commissioning Groups apply for funding. The Long Term Plan states:
For the five-year CCG allocations that underpin this Long Term Plan, NHS England will introduce from April 2019 more accurate assessment of need for community health and mental health services, as well as ensuring the allocations formulae are more responsive to the greatest health inequalities and unmet need in areas such as Blackpool.141
This assessment of need could help CCGs in areas with high numbers of Gypsy, Roma and Traveller people to effectively make the case to NHS England for enhanced funding.
102.The new assessment of needs for CCG resource allocation should include an explicit section for CCGs to outline the needs of Gypsy, Roma and Traveller people in their local areas. This need should be taken into account by NHS England when it is allocating funding to CCGs.
Engaging Gypsy, Roma and Traveller communities in healthcare
103.Building trust is central to ensuring that Gypsy, Roma and Traveller patients engage with health services. We heard of good practice in healthcare in many local areas, which was often driven by passionate and committed individuals who were making great efforts to work with the Communities and build the trust that was needed, often over years. The problem with this model is that when an individual moves on, the trust that has developed goes with them, leaving the service back where it started.142 It also has an unwanted side-effect of absolving other services of their responsibilities to Gypsy, Roma and Traveller patients, as Dr McFadden outlined:
It allows people in mainstream services to say, “We don’t need to worry about Gypsy, Roma and Traveller people because Shaynie is dealing with all that,” and therefore they are not getting the full range of services.143
104.We heard various arguments for and against commissioning specialist services for Gypsy, Roma and Traveller people, separate from the mainstream services. When we asked the Government about this, Jackie Doyle-Price highlighted the need for every local area to consider its own needs and to commission services accordingly.144 She spoke of the importance of health visitors in connecting with Gypsy, Roma and Traveller communities, potentially through maternity services, as there is a strong focus on these services delivering public health messages in the NHS Long Term Plan. She told us:
It is less formal, less threatening and is a much closer relationship, with which we can start giving messages to these communities and families within these communities, because they tend to be clans. We can say, “Start going to the dentist,” and give really good public health messages to these people.145
She nonetheless also recognised that traditional engagement methods were ineffective, stating:
Ultimately, we need to recognise that with the cultural behaviours of this group, the way the public sector usually communicates is not going to work. It has to be something much more formal if we are going to really tackle these inequalities.146
105.We agree that services should be accessible to all. It is not enough to rely on individuals who have the trust of Gypsy, Roma and Traveller communities to deliver all their health services. We believe that the NHS Long Term Plan, with its emphasis on maternity services, can provide a useful vehicle for engagement and dissemination of public health messages to the Communities.
106.NHS England, although they declined to give oral evidence, sent us a submission that set out a vision for Networked Maternal Medicine Service (NMMS) as part of the Long Term Plan. The goal of NMMS is:
to provide advice and care for the highest risk women with significant medical conditions, and to provide local clinical leadership on the identification, referral and management of these women by all staff in contact with pregnant women.147
107.While this initiative is currently in pilot stages and is being tested, it is a welcome development. Maternity and antenatal care provide an opportunity for healthcare staff to support Gypsy, Roma and Traveller women. NHS England should consider training maternity staff and pre-natal staff to enquire about, signpost and refer to services that may also be beneficial to Gypsy, Roma and Traveller women, including immunisation, dental services, mental health services and sexual health checks.
Site quality and health outcomes
108.Only a quarter of the Gypsy and Traveller population live in caravans, but the quality of sites has been raised with us as a significant issue affecting the health of Traveller populations. Figures from the biannual caravan count in England show that approximately a third of sites are socially rented, that is that they are owned by either local authorities or private registered providers.148 The rest are on private land, either owned by Gypsy and Traveller people themselves or rented from private landlords. Sites vary in size and quality and we were told that most sites that are purpose built include facilities blocks for washing, cleaning and laundry, including the site we visited in Bath. However, we were told by witnesses that some sites had “appalling conditions” and that these were “not fit for human habitation”.149 Yvonne MacNamara of Traveller Movement stated that many existing sites were overcrowded and unsafe.150
109.Ministers agreed with the assessment that sites can lack even the most basic of amenities. Jackie Doyle-Price attributed the problem to a lack of a rigorous inspection regime for existing sites, although local authorities have a right to inspect sites.151 She told us that:
we are relying on local authorities to make sure that they are delivering for their communities. I do not want to be dictatorial—you know, “I expect this kind of inspection”—but we ought to be able to expect our local authorities to step up to the plate and do that.152
Lord Bourne preferred to focus on the requirements for planning applications made for new sites, saying:
There are planning rules that have to be adhered to with regard to basic planning, basic hygiene and so on, which are set out in the planning policy for Traveller sites. Local authorities should be monitoring that.153
These rules do not apply to existing sites, but he went on to say that local authorities can inspect their own existing sites. On private sites, he said:
There will be other agencies that may be responsible for particular issues. For example, at a private site it may involve social services if it is something that has affected children. It may be the Environment Agency. It is not quite as straightforward as saying that it is all on the local councils, though some of it is.154
110.Both Ministers were in agreement that the problem with private sites was not one of a lack of legislation but rather a lack of enforcement which allowed sites to be approved and built without proper amenities, or allowed sites that were once in good condition to fall into disrepair.155 We agree that the Planning Policy for Traveller sites should set the standard for any new sites that are being built, but, given that only two local authority sites were opened in the year 2017/18,156 these make up a very small proportion of the total number of existing sites, all of which should have basic amenities. Poor conditions and sanitation on Traveller sites are contributing to the poor health of Gypsy and Traveller families, including many children. Local authorities have powers under the Caravan Sites and Control of Development Act 1960 to attach conditions to licenses for caravan sites if it is in the interest of the people living on the site. Clearly conditions that every site should have basic amenities such as water and electricity are in the best interests of the residents.
111.Local authorities should inspect every existing private Traveller site in their area to map which have access to a minimum standard of basic amenities and which do not. For those that do not, local authorities should place conditions upon the license to ensure that these measures are put in place or consider revoking licenses that do not comply with these conditions. This solution does not address the problem that arises when it is the local authority itself that owns the site. For this, we recommend that the Ministry of Housing, Communities and Local Government explore methods by which local authorities can be held to account for their own sites.
124 Traveller Movement (GRT0055), Leeds Gypsy and Traveller Exchange (GRT0011), UNITING project team (GRT0012)
127 Department of Health, Joint Strategic Needs Assessment and joint health and wellbeing strategies explained: Commissioning for populations, December 2011, p7
128 Equality Act 2010, section 149
130 London Borough of Bromley, ‘Children and Young People Joint Strategic Needs Assessment (JSNA) 2018,’ accessed 19 February 2019
131 London Borough of Bromley, Bromley Joint Strategic Needs Assessment 2017
132 Cambridgeshire Insight,’ Published Joint Strategic Needs Assessments,’ accessed 19 February 2019
133 Cambridgeshire County Council, Joint Strategic Needs Assessment Cambridgeshire Travellers 2010
134 Bath and North East Somerset Council, ‘JSNA updates,’ accessed 19 February 2019
136 Correspondence from Parliamentary Under-Secretary of State for mental health, Inequalities and Suicide Prevention, 24 January 2019
137 Care Quality Commission, ‘Experts by Experience,’ accessed 19 February 2019
138 National Health Service, ‘About the Long Term Plan,’ accessed 19 February 2019
139 National Health Service, The NHS Long Term Plan, January 2019, p7
141 National Health Service, The NHS Long Term Plan, January 2019, p40
148 Ministry of Housing, Communities and Local Government, Count of Traveller Caravans, July 2018
151 Caravan Sites and Control of Development Act 1960, section 26
156 Ministry of Housing, Communities and Local Government, Count of Traveller Caravans, July 2018
Published: 5 April 2019