Gypsies and Travellers in Doncaster Report

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Gypsies and Travel lers in Doncaster: engaging the communit ies on the topic of health and accessing health services Written by Brendan Warner-Southwell January 2018 – March 2019

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Contents 1 .0 Executive Summary ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

2.0 Project Aims ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

3.0 Key findings ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

3.1 Data Findings ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

3.2 Method Findings ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

4.0 Method .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

4.1 Four stages of our approach ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

5.0 Findings ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

5.1 Explanation of Findings ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

5.2 What stops you from accessing healthcare? ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

5.3 What would you not be comfortable talking to a healthcare professional about? ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

5.4 What do you think is the biggest healthcare issue for Gypsies and Travellers? ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

5.5 What would make healthcare services better for you? ... . . . . . . . . . . . . . . . . . . . . . . . . . 1 1

5.6 What do you think the settled community can learn from the GT community? ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

6.0 Recommendations ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

6.1 Education - An Information Pamphlet on Communicating and Engaging with Gypsy and Travellers: .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

6.2 Strategy - Adding ‘Engagement of the Gypsy and Traveller Populations’ to a Public Health Manager’s Portfol io .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

6.3 Operational Change - Funding a Doncaster Wide GT Link Worker: .. . . . . 14

6.4 Conclusion ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

7.0 Value and Credits ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

8.0 Reference List : .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

9.0 Appendices: ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

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1 .0 Executive Summary There are an estimated 4,000 – 6,000 Gypsies and Travellers (GT) living in the Doncaster area in 2019. Average life expectancy for this group is likely to be at least 20 years lower than for the general population. Research has shown that the reason for this lower life expectancy is a mixture of lower education within the community around how to look after their health, but also because of the community accessing health services significantly less frequently than the Gorja (GT term for settled people) community (Worrall, S. 2016). Doncaster CCG asked Co:Create to help them connect with the Doncaster GT community to explore the reasons behind this lack of uptake and co-design some potential solutions. Co:Create and Doncaster CCG have worked creatively to engage with over 50 people from across the GT communities. The findings of this report show that when Gypsies and Travellers in the Doncaster area access health services their experience is reflective of the experiences of GT people across Britain. Our findings show three key issues: GT people do not feel understood by health professionals; they don’t feel like they have a voice in the healthcare they access; and they don’t feel there are enough healthcare services available to them. Our recommendations pull on these highlighted issues and suggest a three-pronged approach. First, we suggest closing front line staff’s educational gap around GT people. Second, we think there should be a strategic plan around how to engage with the GT communities, responsibility for which should be held by a Public Health Manager. Last is an operational change: a Link Worker to signpost GT people to services. This link worker would close the gap between healthcare professionals and the GT communities and develop understanding, connections and higher uptake of essential health services among the GT population.

Violet Cannon at Lee Gap Horse Fair

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2.0 Project Aims 2.1 Who are Co:Create? Co:Create is a project funded by the Department of Health. We aim to build capacity in commissioning practice, helping design personalised and responsive services that effectively integrate the needs and expectations of customers. 2.2 This project A previous collaboration between Co:Create and Doncaster CCG found as an indirect outcome of their work that Gypsies, Romany and Travellers (GRT) were a significant local minority group that Doncaster CCG needed to be better engaged with. The purpose of this new project was to create a channel for Doncaster CCG to meaningfully engage with these communities, improve health services for GT people and establish ways of working together for the future. 2.3 Scope and l imitations Project aims were developed collaboratively through a series of co-design sessions between Co:Create, Doncaster CCG and the two community consultants who were employed as part of the project. The shared goals which were developed can be found in the chart below. As this project did not have the funding to employ necessary translators, it was decided at an early stage that we would not be able to engage the Romany community. This project therefore addresses the health concerns and needs of the Gypsy and Traveller communities only.

BWS – Brendan Warner-Southwell (Co:Create) JRG – Justine Gaubert (Community Journalist Trainer) CCG – Rachael Mather (Doncaster CCG) VC – Violet Cannon (Gypsy and Traveller Consultant)

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3.0 Key findings 3.1 Data Findings

The results of our data are largely reflective of the national picture for Gypsy and Traveller’s

experiences when accessing healthcare services.

Major recurrent themes across the data were:

o Experiences of communicating with front line staff being largely negative

o Cultural experiences of stigma when discussing health topics

o GT people stating that healthcare staff needed educating regarding their

understanding of GT language and cultural beliefs

o Gypsy and Traveller people not knowing which services are available to

them/reporting that services are not available to them

o A general lack of education amongst the communities on how to preventatively look

after their health

We engaged 10 GT people through the Community Journalist project

A further 6 were interviewed by the Co:Create team at the Lee Gap Traveller Horse fair

We also spoke to a further 34 at Lee Gap using an engagement tool which asked GT people

which services they had accessed in the past

For further information on GRT access of health services we would recommend reading

Adrian Jones’s ‘Mystery Shopping of GP Services’ report which took place in the West

Midlands. (Jones, A. 2016)

3.2 Method Findings Through employing a community journalist approach, we were able to use community

assets and knowledge to gain rich and useful conversations around the topic of health.

The method used was time intensive and the community journalists required support,

resource and incentive to participate in the work.

Through comparison of the uptake we had when members of the Co:Create team talked

with Gypsies and Travellers at Lee Gap, the Community Journalist approach yielded richer

and more in depth data.

4.0 Method 4.1 Four stages of our approach

1. Research

Co:Create and Doncaster CCG went through a process of researching all available literature

that could be found on the Gypsy and Traveller population. We spoke to key individuals from

across the public and voluntary sectors who were currently engaging with Gypsies and

Travellers. The key things that came out of this stage were that GT people distrusted

professionals and that the level of stigma and nuances of language around health concerns

within the community meant discussing health issues would be very hard for us to do alone.

We were therefore not the right people to engage the community.

Through our research, we came across The Rennsselaerville Institute’s Community Sparkplug

Model©. This approach focuses on supporting members within communities, who are

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engaged, active and driven, to complete community projects. We borrowed from this

principle and decided to use a community journalist approach, a method we had successfully

employed previously when working with hard to reach communities. We aimed to get active

and engaged members of the GT communities to negotiate the nuances of discussing health

concerns, and conduct interviews about health and health services on our behalf.

2. Planning

Co:Create commissioned a Community Journalist trainer (Justine Gaubert), who Co:Create

had worked with previously, to run a community journalist course. Through our research, we

had discerned that the first contact with the community would be key. Justine researched

individuals who had done similar work in the past. She found that Violet Cannon, Director of

York Traveller Trust, had performed a Community Journalist project in Doncaster (2016)

exploring community assets and Gypsy and Traveller Pride. We contacted Violet and then

commissioned her to consult on recruitment of community journalists and ensure that the

project was culturally sensitive.

3. Recruitment

The recruitment stage consisted of two strands. Firstly we

went to Lee Gap horse fair, frequented by GT people from

the Doncaster area, to conduct further research of GT

people within the Doncaster area but also to push a

recruitment drive for Community Journalists. The second

recruitment strand was utilising Violet’s contacts and

knowledge of engaged and driven people in the

communities.

4. Implementation

Once we had recruited community journalists we ran a

training course which provided the journalists with skills

on how to conduct interviews, be interviewed and

cinematography. We also provided more specialist training

for those that requested it, such as press training. In the

final session the Community Journalists co-designed the five questions they would ask to

their interviewees with Paul Hemmingway (Head of Communications and Engagement at

Doncaster CCG). We then co-designed the risk assessment of the project.

The community journalists were then asked to conduct two interviews each and transcribe

them along with completing appropriate E&D paperwork and GDPR forms. Community

journalists were given a voucher payment of £50 for completing the work.

5.0 Findings 5.1 Explanation of Findings These questions were created through research we had done over the course of the project and a final co-design session with the community journalists and Doncaster CCG. Ten GT people from

Flyer from Lee Gap horse fair

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across Doncaster were interviewed with an equal spread of men and women from across the Gypsy and Traveller populations. Thematic breakdown analysis was then performed on this data, the whole of which can be found in Appendix B, with the full transcriptions found in Appendix A. 5.2 What stops you from accessing healthcare? Themes:

- Prejudice of front line staff (5)

- Lack of faith in doctors (4)

- No fixed address (3)

- Not having the time to book appointments (3)

- Fear of healthcare environments (3)

- Fatalistic attitude (1)

- Seeking healthcare as a last resort (2)

The two key themes which were most common focused on either experiencing prejudice from front line staff or not having faith in the doctors helping them. This points to an overall distrust of healthcare workers.

"What stops you from accessing healthcare?"

Prejudice of front line staff

Lack of faith in doctors

No fixed address

Not having the time to book appointments

Fear of healhcare environments

Fatalistic attitude

Seeking healthcare as a last resort

They (Receptionists) are ignorant pigs, they

look down their noses at you

They have decided what we are going to be like and that is how we are judged before we

open our mouths

When you do get past them it is like a jackpot if

you get a dr that is ok

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5.3 What would you not be comfortable talking to a healthcare professional about? Themes:

- Consequences of speaking to professionals honestly (2)

- Cultural gender issues (4)

- Stigma around sexual health (4)

- Fear of social worker (1)

- Language barriers (2)

The biggest two themes which emerged in this question were clearly a symptom of GT cultural norms. In the GT community there is a strong level of stigma around discussing sexual health. This stigma is intensified further when a GT person is asked to discuss anything regarding their health with someone of the opposite sex.

"What would you not be comfortable talking to a healthcare professional about?"

Consequences of speaking to professionals honestly

Cultural gender issues

Stigma around sexual health

Fear of social worker

Language barriers

I don’t like talking to men about woman’s problems but

what choice do you have really Anything too personal is

shameful

if I went to the Dr and was really honest, they might take the kids

from me

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5.4 What do you think is the biggest healthcare issue for Gypsies and Travellers? Themes:

- Alcohol (5)

- Mental health (2)

- The Settled and Traveller Social Divide (3)

- Drugs (3)

- Suicidal Ideation (1)

- Appointment process (1)

- Cancer (1)

- Lack of awareness around personal wellbeing (2)

- Diet (2)

- Lack of support from health professionals (3)

- Fear of what healthcare professionals will tell you (1)

"What do you think is the biggest healthcare issue for Gypsies and Travellers?"

Alcohol

Mental health

The Settled and Traveller Social Divide

Drugs

Suicidal Ideation

Appointment process

Cancer

Lack of awareness around personal wellbeing

Diet

Lack of support from health professionals

Fear of what healthcare professionals will tell you

We can’t help ourselves

[with alcohol] we are pigs

Drugs, it’s killing us off. Not just our bodies, our morals

and everythink man

Who is there to help us when things go wrong who is there to encourage us to go and

ask or when things are hard to demand help?

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5.5 What would make healthcare services better for you? Themes:

- Staff-patient relationship (1)

- Availability of services (5)

- Better level of staff education regarding GRT community (7)

- Better communication generally (4)

- Representation (1)

The theme which was most common in this section was a belief that health and social care staff needed specific training around GT culture and how to engage with people from the communities. We have taken this suggestion and provided it specific focus in our recommendations. For further information on language barriers read Friends Families and Travellers ‘Guide for professionals working with Gypsies, Roma and Travellers in Children’s Services’ (2017).

"What would make healthcare services better for you?"

Staff-patient relationship

Availability of services

Better level of staff education regarding GRT community

Better communication generally

Representation

If they [doctors and healthcare workers]

didn’t see big fat Gypsy wedding. If they didn’t

see a pile of rubbish left at the side of the road. If

they just seen me. It would be better

They [doctors and healthcare workers]

live in their world not in mine. They don’t

understand the way I speak, live or think If they had more time

to care… Take more time to listen

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5.6 What do you think the settled community can learn from the GT community? Themes:

- Respect (2)

- Family and community relationships (6)

- Work ethic (1)

- Humour (1)

"What do you think the settled community can learn from the GT community?"

Respect

Family and community relationships

Work ethic

Humour

We care for each other, we love each other, we fight for what we value

and we value people not things

We have respect for ourselves and our bodies

Photo taken at Lee Gap Horse Fair

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6.0 Recommendations Over the course of this research three key areas have emerged that can be addressed to improve outcomes for GT peoples. These are:

1. Addressing the Educational gap in staff training regarding GT people 2. Strategy behind addressing GT people’s health inequalities 3. Having operational personnel to engage and liaise with GT people

We are aware that funding across both the Health and Social care sector is uncertain so we have ordered our recommendations in relation to both cost and also speed at which they could be implemented. From least expensive and least time consuming to most expensive and most time consuming. 6.1 Education - An Information Pamphlet on Communicating and Engaging with Gypsy and Travellers: Cost: Estimated one off cost of £10,000, this would include the consultant fee of researching and writing the pamphlet and cost to print for Health and Social Care Staff across Doncaster. Co:Create can recommend consultants who would be able to perform the work. Time to Implement: 4 months, from commissioning of work to publishing of pamphlet. Outline: The booklet would explain to Health and Social Care staff two things

1. The nuances of Gypsy and Traveller cultures. It would break down the impact that not respecting these has on provider and client relationships.

2. The second section would highlight language which is appropriate to use with Gypsies and Travellers. Over the course of our research it has become clear to us how important using the correct language around members of the communities is when trying to engage with them. Due to the highly-stigmatised nature of health concerns amongst the GT populations, certain words can elicit a response that may be hard to understand if you are from a Gorja background. For example, the word ‘cancer’ is not a word which is used amongst the community. Instead cultural synonyms are used such as ‘The bad word’. This pamphlet would provide a list of these words, explain the stigma against these words and synonyms that the populations popularly use.

Impact: The impact of this pamphlet would rest on the success of how it was distributed and read by front line staff. Speaking to staff from both the Health and Social Care sectors across Doncaster has highlighted to us that there is little awareness of Gypsy and Traveller cultural norms amongst the workforce. What has also been reported is a difficulty faced by front line staff when trying to engage with the GT populations. If this pamphlet were distributed and read widely it could greatly improve the understanding that front line staff have of how to effectively communicate with Gypsies and Travellers. This approach places all emphasis on front line staff for engaging with the Gypsy and Traveller populations, which means that education of the communities can only be done if GT people are accessing Health or Social Care services. By itself, this approach does not support the hardest to reach.

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6.2 Strategy - Adding ‘Engagement of the Gypsy and Traveller Populations’ to a Public Health Manager’s Portfol io Cost: Free Time to Implement: Unknown. The viability of this approach would be dependent on the capacity of the Public Health Manager to take it up. The implementation time would be DCCG’s liaising with DMBC. Outline: A Public Health Manager would take up responsibility for providing a strategy to two key areas:

1. Engaging with the Gypsy and Traveller populations 2. Raising the profile of Gypsy and Traveller concerns across the Health and Social Care Sectors

Impact: The success of this approach would be dependent on two things, the capacity of the person whose portfolio this responsibility got added to and the time it took to implement. To be successful in carrying forward these two strategies, time would need to be invested in the approach. Without time being invested in the strategies and carrying forward the strategies, there is a risk of paying lip service to engaging with the community and their concerns. The time it takes to implement this approach is also important because of the momentum that this project currently has, with the links with the community still being warm. If this approach takes too long to implement engaging with the community could be a lot harder to pick up again. 6.3 Operational Change - Funding a Doncaster Wide GT Link Worker:

Cost: £40,000 PA (Estimated amount including oncosts) Time to Implement: 6 months – Estimated from submission of funding application to recruitment to the role Outline: Funding a GT link worker would allow for active engagement with the GT communities. This would allow for an official link with the GT community to educate the GT population on issues around public health, access to social care services and lessen the stigma of professionals within the community. As well as this the link worker would have the ability to refer from in the community to statutory services that individuals may benefit from. The link worker could also act in a capacity, either through workshops or drop in sessions, to educate front line staff on how to engage with the GT population. Therefore, educating staff as well as the GT population. Impact: The impact of this would be great for the Doncaster GT populations. Throughout our research, we have heard repeatedly that GT people don’t feel listened to and feel that professionals do not understand them. Having a link worker, who could feed into both the council and healthcare services, would provide an operational mode of directly bridging the gap between Health/ Social Care professionals and GT people. For this to be most effective however there would need to be strategy behind the work and education of staff across Doncaster to allow for the services the link worker signposted on to to be Gypsy and Traveller friendly. 6.4 Conclusion Each approach which has been suggested in this findings report would have tangible positive impacts for the Gypsy and Traveller populations across Doncaster. Our findings are structured so that they complement each other, whilst also working as standalone strategies. Our first

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recommendation would start to bridge the educational gap in front line staff’s understanding of GT people. We would advise a strategy behind this to make this approach effective. This would be provided by our second recommendation for a Public Health Manger to take responsibility for leading on the strategy around improving health outcomes for GT people. Our last recommendation would put this strategy into practice. An operational worker who has the role of educating both GT people about their health and the services they can access could greatly reduce the stigma of health professionals within the community. This report proposes that by tackling the workforce’s educational gap, implementing a strategy and putting in place an operational plan, Doncaster will start to see an improvement in health outcomes for Gypsy and Traveller people.

7.0 Value and Credits This piece of work has been delivered by Co:Create in partnership with Doncaster CCG, Violet Cannon and Justine Gaubert. This project has been funded by the Department of Health. Thanks to all the Community Journalists who attended training sessions and conducted interviews. Thanks to the interviewees for their time in providing their time and invaluable perspectives. Thanks to all the interviewees and members of the Gypsy and Traveller community who spoke to us throughout this project.

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8.0 Reference List : Cannon, V. (2016), ‘Proud Gypsy Traveller’, https://www.travellerstimes.org.uk/features/proud-gypsy-traveller-violet-cannon Doncaster CCG (2011), ‘A picture of Doncaster’, http://www.doncasterccg.nhs.uk/wp-content/uploads/2016/08/A-picture-of-Doncaster-Census-2011.pdf Fair Health (2016), ‘Gypsy and Traveller Healthcare’ https://www.fairhealth.org.uk/learning/gypsytraveller/ Jones, A. (2016) ‘Gypsy, Roma & Traveller – GP Practice Mystery Shopping Exercise Report’ (A report prepared by British Red Cross for the Birmingham CrossCity Clinical Commissioning Group) Sweeney, S. and Matthews, Z., ‘Friends, Families and Travellers A guide for professionals working with Gypsies, Roma and Travellers in Children’s Services’ (A report prepared for Friends Families and Travellers) Rennselaerville Institute (2017), ‘Community Sparkplugs: Sparking Innovation and Self Help’, https://www.youtube.com/watch?v=SALQGNtxbxU

https://www.travellerstimes.org.uk/features/proud-gypsy-traveller-violet-cannon

https://www.travellerstimes.org.uk/features/proud-gypsy-traveller-violet-cannon

http://www.doncasterccg.nhs.uk/wp-content/uploads/2016/08/A-picture-of-Doncaster-Census-2011.pdf

http://www.doncasterccg.nhs.uk/wp-content/uploads/2016/08/A-picture-of-Doncaster-Census-2011.pdf

https://www.fairhealth.org.uk/learning/gypsytraveller/

https://www.youtube.com/watch?v=SALQGNtxbxU

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9.0 Appendices: Appendix A: Transcribed Community Journalist Interviews Appendix B: Thematic Analysis of Qualitative Data Appendix C: Co-designed Risk Assessment and Process for Collecting Interviews for Community Journalist Project Appendix D: Break down of results from Co-design Activity Covered at Lee Gap Horse Fair

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Appendix A: Transcribed Community Journalist Interviews Interview 1

1) What stops you from accessing healthcare?

- Past and present experiences - Racism

It’s the receptionists really, once they finds out what you are… they make it hard to feel like you matter, like they could care less about you. Then when you do get past them it is like a jackpot if you get a dr that is ok. Having the site address don’t help. When we was in the house it was a bit better. But they don’t see us like humans really. We are just a problem to send away.

- What services do you know are available?

The doctors and the hospital and dentists what else is they 2) What would you not be comfortable talking to a healthcare professional about?

- Gender issues

- Diagnosis fears

- Fear of social worker

You don’t tell them some stuff because you are frightened to speak truthful, like if I am not doing so well with my nerves and I tell them. They will take the children or something. I don’t like talking to men about woman’s problems but what choice do you have really. You have to just forget you’re shame and you’re upbringing and just try to get help if you need it. But they don’t listen. You have all that stress and worry. You get the courage to go and they act like its nothing at all. Give you a tablet of tell you it will be ok. I want to know what’s wrong DR. I think most the time they don’t know themselves. I don’t tell the Dr what I think is wrong, do any body tell them? They are there to tell us.

3) What do you think is the biggest healthcare issue for Gypsies and Travellers?

- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

Drink, our nerves and not knowing how to ask for help. If we felt like we mattered, we might go get help sooner. Instead it feels like everyone is out to change and destroy us.

4) What would make healthcare services better for you?

- Better healthcare professionals

understanding of GRT experience

- Better level of education to GRT

community

- Better communication generally

They is a nice Dr who deals with a lot of my family. I mean I don’t live in Doncaster, I moved down to Leicester, but I have my Dr up here. I kept it to my mams address. It is hard sometimes to get back. But I know that one of the men in the drs is a nice man. I try to see him all the time. If they had the time for you would make it better. If they didn’t see big fat Gypsy wedding. If they didn’t see a pile of rubbish left at the side of the road. If they just seen me. It would be better. But they don’t.

5) What do you think the settled community can learn from the GT community?

We have respect for ourselves and our bodies. We love our family unconditional. We don’t let our own go hungry or without a bed. We look after our old people Interview 2


- Past and present experiences

- Racism

- What services do you know are

available

19

It’s the time to be honest, trying to get an appointment when you work is hard. And the people who answer the phones are like pigs. I got told the other day, that if I cant get to a appointment in the middle of the day over by Mexborough it was tough. I know it is to see a specialist, but she said either cancel and start again or attend. That is your choice. That’s not right is it? And another bit of me has to fight myself to go, its frightening isn’t it. Walking into a room a healthy man and coming out with a dead man walking. I think if it isn’t serious it will be ok and if it is serious, id rather fight on and not know. Half the time as soon as people find out they have anything big wrong with them, they die a few weeks later. Not for me. I want to go out swinging!

2) What would you not be comfortable talking to a healthcare professional about?

- Gender issues

- Diagnosis fears

- Fear of social workers

Anything too personal is shameful isn’t it. I don’t know personal stuff about body parts. 3) What do you think is the biggest healthcare issue for Gypsies and Travellers?

- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

Drugs, its killing us off. Not just our bodies our morals and everythink man. Its ruining the worldI know a load of people who killed themselves, they couldn’t cope. I know life is hard and sometimes you do think what’s the point keep fighting, I mean everything we do is a fight though isn’t it. Nothing comes easy. Going for a bit of food, getting a bit of work. Nothing is just straight forward when you are a card carrying Gypsy or what ever you call us. It gets hard…..





community


Nicer people to answer the phone, more appointments at different places or something. And yeah I suppose they know about other people, so they should know more about us. Maybe then we would get a bit of decency from them



community


We are hardworking, put our family first. No one gets left behind…. I’m joking but you know what I mean. We look after each other. Like that old man you know, you make sure hes ok don’t you. Hes got no wife no kids. But you make sure hes got some company and all that Interview 3 What stops you from accessing healthcare?


- Racism


available

Time really. I have diabetes and I know I am getting on, but I still work. So, time more than anything. I don’t think they know what I am. I don’t fit the stereotype do i? My address is a nice little village. I’m just a respectable old man. They are usually lovely with me.


- Gender issues

- Diagnosis fears


20

Nothing really that I can think of. Maybe I wouldn’t want to talk about certain things with a young lady, but they are trained to talk about such things.


- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

Drink and Drugs without a doubt, all young people care about now.


Better healthcare professionals understanding of GRT experience


community


Better appointment process, I think.


- Better level of education to GRT community


We all learn from each other if we take the time. Interview 4



- Racism


available

They are pig ignorant, they want you to give them a full rundown from the colour of your snot to the length of your armpit hair. They are a glorified sectary. Then they ask is it an emergency and you think should I lie and pretend I am dying? If it was an emergency would I not be up at the hospital? The drs isn’t for emergencies is it? Anyway, you say no, its just a bad bad pain and they give you an appointment for 3 weeks time. When you say can I not get sooner, they tell you to ring back in the morning if its any worse. who designed that way of doing things? Really. Who can ring up every morning at 8? Who can drop everything to go straight into the drs and sit about for 45 minutes because he is running late? I will be honest I go straight to the hospital if its bad or just forget about it if its only something simple.


- Gender issues

- Diagnosis fears


I am not comfortable talking about personal stuff. I get shamed to ask what they mean as well. If I don’t understand. You feel half simple if you ask them what they mean.


- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

I don’t really know we are dropping like flies, the bad cover (cancer) seems to be getting more and more of us. But I don’t know if I am really honest

21





community


If they understood us. If they told us about stuff. I don’t know how would I know really



community


We know how to have a laugh at ourselves, you have to in this world or it would crack you up good and proper. Interview 5



- Racism


available

I just don’t go to the dr unless I have to, and I am left with no choice. I do not want them to call me a hypochondriac. I went a few year back and they made me feel like I was stupid and making it up. So I don’t go no more.


- Gender issues

- Diagnosis fears


Woman’s things private body things, unless I was having a baby my body is mine.


- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

How could a sunbed be a health care issue? Everyone uses them, they are good for you. Dry up spots and make you feel better about yourself. And when you have eczema it helps heal that too Me I’ve been going on them since I was about 12. Have done all my life, only stopped when we was getting the children. I would say it was drink and drugs really. I know we all have bad days with our nerves but that is just life isn’t it, everyone I know has bad nerves sometimes. Don’t mean you have mental health, you just haves a bad day. Tomorrow it will all be better and you can get back on with life.





community


They don’t get us really do they, we talk a different way and like me, I got a strong accent so I feel like I haves to talk very very slow for them to be able to listen to me and understand. And I think even when they know what I am saying they still don’t understand me. They live in their world not in mine. They don’t understand the way I speak, live or think. They may as well be German talking to me.



community


22

We don’t have a load of little girls being mammies, we have woman being mammies and they children have 1 daddy. We care about respect and we care about each other.

Interview 6 1) What stops you from accessing healthcare?


- Racism


available

My foot not hanging off. I only go if it is very serious and I can’t see to it myself, so unless I’ve chopped my foot off with a chainsaw or something like that I just don’t go.


- Gender issues

- Diagnosis fears


I don’t really talk to them, do I? I go to the hospital with some piece of tree in my eye or something and I leave. What would you be talking to a Dr about other than what ever was wrong with you. And if you have half a tree sticking out you’re eye, you don’t really need to sit and have a he4art to heart with him do you


- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

Ignorance, grown people should be able to make sensible choices and if they cant then it isn’t the health care or anyone elses problem is it. It’s the idiot grown up who doesn’t know when hes being a glutton or a alcoholic. People need to be made take responsibility for what they do. Stop blaming the world for your short falls.


- Better healthcare professionals understanding of GRT experience



Sorter waiting times I suppose. I don’t really use them much




I don’t really know if I’m honest Interview 7



- Racism


available

They (Receptionists) are ignorant pigs, they look down their noses at you when you say you can’t read or you speak a bit loud for them. I get sick of being told I am aggressive just because I don’t agree with them.

23

It is like they have decided what we are going to be like and that is how we are judged before we open our mouths. (have you had that happen to you recently?)

About 6 months ago, when I wanted an appointment, I said the dr wants me to make an appointment in 3 weeks, she said she couldn’t do that I had to ring back, I told her I couldn’t and would she make one now please. She told me to stop being aggressive or I would have to leave, she said she was doing her job and was entitled to not be harassed. She said it really loud in front of everyone. I was shamed to death. I just walked out the place.

(did you make the appointment?)

No, I haven’t been back to the place, ill just go to the hospital if I need anything


- Gender issues

- Diagnosis fears


I don’t like social workers, but I wouldn’t be talking to a dr about that, I just keep away from them and hope they keep away from me... I know that sometimes if I went to the Dr and was really honest, they might take the kids from me. Like if I said about my nerves. So, I just don’t mention it. It is for the best that way. My kids are more important than me having a bad day.

(what are your bad days like?)

My bad days are bad, I will be honest I do understand how people can just walk away and disappear. On my bad days I think what is the point of being a part of this world, be better off dead… don’t worry I am a coward and I love my kids. I would never do that not brave enough or selfish enough


- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

Drink and drugs we just go overboard don’t we, we cant help ourselves we are pigs. I suppose food as well to be honest, it is just as bad. Have you ever seen so many obese young woman in your life? I haven’t, they want to be ashamed of themselves. Id put them all on a diet

( what would you call a good diet?)

Stop eating, it is all the junk food and takeaways, young woman are too lazy now so they go get a maccy Ds. When I diet I have a apple and my redbull for my breakfast and then maybe a slice of dry toast for my dinner and nothing for tea. Oh and loads of black coffee or red bull.

(do you think that is healthy?)

If its not full of fat its healthy isn’t it? I know we think a fat child is nice, but they get too fat, thin is healthy I think, not for kids, but for grown ups.





community


24

Take the time to listen and not judge us.



community


I don’t know really, I don’t want them to know about me, the more they know the worse things get. Interview 8



- Racism


available

I go to the doctors when I need to and they are civil, I think having a house address and no accent helps though, I have heard the talk about the gypsies before, make you feel like telling them what you think, but I just keep my head down and my mouth shut. It would only make it harder for yourself. They wouldn’t change their mind of you.


- Gender issues

- Diagnosis fears


They are doctors, they have seen and heard it all. I don’t like some of the tests that need to be done but you are better off getting seen to aren’t you, most of them that die quick is the ones who didn’t go ask for help


- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

You don’t know what you don’t know, and that is the biggest problem, we don’t know the damage stuff does, we don’t know where to get help, we don’t know how to complain, and no one cares enough to explain in a way we can understand. The work you did (Doncaster CVS) no one does that anymore. Who is there to help us when things go wrong who is there to encourage us to go and ask or when things are hard to demand help? You and the other woman, you used to take the time to explain stuff, tell us. Sit have a chat and a coffee. You took the time to make us go get help. No one can do that now. We have nothing in Doncaster now





community


It isn’t just health care we need help with we have nothing, we are being stomped out in our thousands they are making it impossible to be a Gypsy and then they wonder why people are killing themselves in droves. We need people to stand up for us. To make a stand and say no its not right.




How to look after their elders, how to take care of family.

25

Interview 9 1) What stops you from accessing healthcare?


- Racism


available

I am frightened of them if I am really truthful, I just think they bring doom and gloom, you go and they find something wrong, they give you pills and then they find something else wrong and something else and something else. I think it is better to stay away the pills seem to cause more then they cure. I just don’t like them, and they talk in a way that make me feel stupid. I just don’t like it all all.


- Gender issues

- Diagnosis fears


Private personal stuff I suppose, not if it was a woman but if it was a man id be ashamed


- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

Eating and drinking too much It will kill them, they don’t know how to eat right





community


I don’t know, how would I know? You don’t know what you don’t know.




How to care for others, how to know when someone else needs you

Interview 10



- Racism


available

I don’t get the time, I don’t have the patience once I have the time, the system is stupid. (How do you mean?)

I mean you have to try and take time out of a life that is already busy, you have to be really really sick before you can fit it in, then you ring the dr and you get a snotty receptionist who can only give you an appointment if you think its an emergency. I want to say I want to see a dr before I have to take a day off work. It don’t seem to be set up for people who work. And then you get in there finally after taking a day off work or something, and the dr can’t help, doesn’t seem to care or want to know. So, you don’t bother the next time, you leave it and you let it get worse, and each time you wait a bit longer and you let the thing get worse.


- Gender issues - Diagnosis fears

26


I do get shamed and there is loads I don’t like to talk about, but if it is bad I will. But I don’t think we say the right words to make the dr understand what is going on. (what do you mean?) Like we don’t shout loud enough for fear of hearing something we don’t want to hear or something. Like if someone is in a lot of pain or something, we don’t explain how bad the pain is. I sometimes wonder if they use different words to us for pain? I don’t know really. I just think sometimes I feel like I am dying and they just tell you to go home and rest. Or you hear about people with that bad cover (cancer) and they have been to the drs they have begged to get help and then it is when they nearly are dead that someone listens. Look at poor old ***** .God rest him. how long must he have had that before someone listened? He got diagnosed not 4 months ago. And hes dead! Dead, gone to get a day for when treatment could start, well in his mind that is what he went for and instead he got sent home to die! The mans been losing weight and been in pain for years. It was the same for poor *** and ***** God rest them.


- Drugs

- Diet

- Alcohol

- Sun beds

- Mental health

Fear! Once you think you are dying, and you have no hope you are gone. Whatever age, what ever is wrong, you lose the will to fight, you get too feared to fight, you have lost. No matter what if you fight, be it the drs, the receptionist or your own body and mind they you stand a chance of winning





community


If they listened, if they understood us. If they just had more time to care.




-

We care for each other, we love each other, we fight for what we value and we value people not things.

Appendix B: Thematic Analysis of Qualitative Data Expanding on findings Q1) What stops you from accessing healthcare? Q2) What would you not be comfortable talking to a healthcare professional about? Q3) What do you think is the biggest healthcare issue for Gypsies and Travellers? Q4) What would make healthcare services better for you? Q5) What do you think the settled community can learn from the GT community

Q1) What stops you from accessing healthcare? Themes:

- Prejudice of front line staff (5)

- Lack of faith in doctors (4)

- No fixed address (3)

- Not having the time to book appointments (3)

- Fear of healthcare environments (3)

- Fatalistic attitude (1)

- Seeking healthcare as a last resort (2)

Prejudice of front line staff is the most commonly occurring theme, interviewees from the GT communities often thought they were being judged by the receptionists. One interviewee went as far as stating “They (Receptionists) are ignorant pigs, they look down their noses at you”. Those who mentioned the front line staff felt a social divide between the settled and traveller communities, and felt they were treated differently due to their culture, stating “once they find out what you are” and “they have decided what we are going to be like and that is how we are judged before we open our mouths”. Lack of faith in doctors is another theme that frequently occurred. One interviewee said “when you do get past them it is like a jackpot if you get a dr that is ok” insinuating a lack of trust in the capability of the doctors. Another interviewee even states “They are pig ignorant, they want you to give them a full rundown from the colour of your snot to the length of your armpit hair”. Interviewees felt uncomfortable sharing personal information with a healthcare professional, due to lack of faith and assurance that they would genuinely receive support. Therefore, having a negative doctor-patient relationship can affect the level of information shared; resulting in the patient not receiving the required treatment.

"What stops you from accessing healthcare?"

Prejudice of front line staff

Lack of faith in doctors

No fixed address

Not having the time to book appointments

Fear of healhcare environments

Fatalistic attitude

Seeking healthcare as a last resort

Q2) What would you not be comfortable talking to a healthcare professional about? Themes:

- Consequences of speaking to professionals honestly (2)

- Cultural gender issues (4)

- Stigma around sexual health (4)

- Fear of social worker (1)

- Language barriers (2)

For question two, cultural gender issues is one of the most frequently occurring themes. It was made very clear that the GRT community find it difficult and uncomfortable to discuss health related issues with a healthcare professional of the opposite sex. One interviewee states “I don’t like talking to men about woman’s problems but what choice do you have really”. This may prevent the patient from opening up to the healthcare professional; disallowing them to seek the medical advice they require.

"What would you not be comfortable talking to a healthcare professional about?"

Consequences of speaking to professionals honestly

Cultural gender issues

Stigma around sexual health

Fear of social worker

Language barriers

The other most common theme surrounding question two is the stigma around sexual health. People of the GRT community told us that anything private or personal is uncomfortable to talk about. One interviewee claims “anything too personal is shameful”. They are too embarrassed and ashamed to discuss private information. Another interesting theme which occurred is consequences interviewees reported when speaking to professionals honestly. One interviewee even went as far as stating “if I went to the Dr and was really honest, they might take the kids from me”. Here, the GRT community fear the repercussions of sharing personal information with a healthcare professional. Q3) What do you think is the biggest healthcare issue for Gypsies and Travellers? Themes:

- Alcohol (5)

- Mental health (2)

- The Settled and Traveller Social Divide (3)

- Drugs (3)

- Suicidal Ideation (1)

- Appointment process (1)

- Cancer (1)

- Lack of awareness around personal wellbeing (2)

- Diet (2)

- Lack of support from health professionals (3)

- Fear of what healthcare professionals will tell you (1)

When asked what the biggest healthcare issue for Gypsies and Travellers was, Alcohol came out as the greatest theme regarding the biggest healthcare issue for Gypsies and Travellers. However, all responses who declared alcohol are aware that this is a self-inflicted problem, stating “we can’t help ourselves we are pigs”.. Another theme which links closely with Alcohol is the consumption of drugs. One interviewee stated, “Drugs, it’s killing us off. Not just our bodies, our morals and everythink man”. Another theme picked out for question three is The Settled and Traveller social divide. One respondent said, “If we felt like we mattered, we might get help sooner”. This indicates that the GRT community do not feel valued within the settled community and highlights how the community/healthcare professionals make them feel.

"What do you think is the biggest healthcare issue for Gypsies and Travellers?"

Alcohol

Mental health

The Settled and Traveller Social Divide

Drugs

Suicidal Ideation

Appointment process

Cancer

Lack of awareness around personal wellbeing

Diet

Lack of support from health professionals

Fear of what healthcare professionals will tell you

In addition, another theme was Lack of support from healthcare professionals. One interviewee said, “Who is there to help us when things go wrong who is there to encourage us to go and ask or when things are hard to demand help?”, suggesting a clear lack of support from healthcare services. The same interviewee then states, “we have nothing in Doncaster now” which brings attention to the support they once had but no longer receive. On the other hand, this also reveals a lack of awareness of the healthcare services available to them. Q4) What would make healthcare services better for you? Themes:

- Staff-patient relationship (1)

- Availability of services (5)

- Better level of staff education regarding GRT community (7)

- Better communication generally (4)

- Representation (1)

The most reoccurring theme surrounding question four is having a better level of staff education regarding the GRT community. Many respondents were said to feel judged based on stereotypes or by what has been presented in the media. One interviewee claims “If they didn’t see big fat Gypsy wedding. If they didn’t see a pile of rubbish left at the side of the road. If they just seen me. It would be better”. This implies that the stigma which surrounds the GT community influences healthcare professionals’ views and the way they treat them. Interviewees told us, “I suppose they get to know about other people, so they should know more about us” and “They live in their world not in mine. They don’t understand the way I speak, live or think”. It is clear that they believe there is a social divide between the settled community and the Gypsy and Traveller community, where they do not get treated equally. Therefore, because the GRT community feel they are not being listened to or understood, they may further avoid seeking help from healthcare services. The second most reoccurring theme is availability of services. One interviewee suggested “more appointments at different places”. This tells us that the GT community may benefit from a more adjustable and flexible system to suit their needs and lifestyle. Other interviewees responded stating, “If they had more time to care”, and “Take the time to listen”. This indicates that people of the GRT community want to feel valued and respected in order to make healthcare services better for them. This can also result in them being more open and comfortable when discussing healthcare issues.

"What would make healthcare services better for you?"

Staff-patient relationship

Availability of services

Better level of staff education regarding GRT community

Better communication generally

Representation

Q5) What do you think the settled community can learn from the GT community? Themes:

- Respect (2)

- Family and community relationships (6)

- Work ethic (1)

- Humour (1)

When asked what the settled community can learn from the GT communities, massive emphasis was based around family and community relationships. One interviewee stated “We care for each other, we love each other, we fight for what we value and we value people not things”. It is clear that this is a very strong, tight-knit community where each and every person is valued. Family and friends are portrayed as a definite priority and each person has a high sense of importance. The second common theme for this question is respect. One respondent replied, “We have respect for ourselves and our bodies”. Respect has been portrayed as very important across the GRT community. However, it has become apparent that the settled community and the GRT community may have different ways of interpreting respect regarding their bodies. The settled community show respect to their bodies by visiting healthcare services in times of need, whereas the GRT community will respect their bodies by keeping health issues private and not vocalising personal information – therefore, this may stop them from seeking the help they need.

"What do you think the settled community can learn from the GT community?"

Respect

Family and community relationships

Work ethic

Humour

Appendix C: Co-designed Risk Assessment and Process for Collecting Interviews for Community Journalist Project

Step 1. Preparation for the interview

Because of the co-designed risk assessment we did on the 17th of November, we decided that the biggest risk you would face whilst performing this piece of work were dog bites. Before interviews, to reduce this risk, Community Journalists will ring the interviewee and ask that dogs at risk of causing harm to you be locked away before you visit the person you are interviewing. Ask the person you will be interviewing the way in which they would like to be interviewed and collect the equipment necessary for that interview. Make note of the person you are visiting’s contact number and fill out the lone worker form to assess the risk of performing the interview. Follow the guide on the lone worker form, to assess whether it is safe to perform the interview. If you are unsure, contact Violet Cannon. Do not interview anyone that you do not know well enough to fill out the Lone Working Risk Assessment form.

Step 2. Just before the interview Fill out one of the Lone Working Risk Assessment form, which you will have been given in this pack. Send Violet Cannon a text message with a picture of the interview risk assessment to notify her that you will be performing an interview and the time you will be finished. You will then destroy the risk assessment by shredding it. You must not throw it in the bin before shredding it.

Step 3. During the interview Put the person you’re speaking to at ease and have a general conversation to start with. Only start conducting the interview when you are confident that the person you are interviewing is feeling comfortable. If using either audio or video during the interview only use first names. This is so that the data we collect can remain anonymised and complies with GDPR guidelines. Before you conduct the interview ask the interviewee to sign the Publicity and Consent Form and also the Equality and Diversity form. These will have been given to you in this pack.

Step 4. The questions 1. What stops you from accessing healthcare?

Prompts: Past and present experiences What services do you know are available Racism

2. What would you not be comfortable talking to a healthcare professional about?

Prompts: Gender issues Diagnosis fears Fear of social workers

3. What do you think is the biggest healthcare issue for Gypsies and Travellers?

Prompts: Drugs Diet Alcohol Sun beds Mental health

4. What would make healthcare services better for you?

Prompts: Better healthcare professionals understanding of GRT experience Better level of education to GRT community Better communication generally

5. What do you think the settled community can learn from the GT community?

Step 5. After the interview Send Violet a text immediately after and let her know that you have Finished the interview and have left the location. Make sure that you don’t place the interviewees name on the interview notes/file. Simply place a number on the notes/file, which will be given to you by Violet. This is to comply with GDPR rules so that the data remains anonymous. If the information you have collected is an audio/video file – upload this securely to our shared Dropbox and then delete the file from the device you have used. If you have collected written notes then you do not need to do this.

Step. 6 At the end of all of the interviews You will have been given a pre-paid recorded envelope by Brendan Warner-Southwell. If you haven’t, contact Brendan on 07393014949 and he will get one across to you. Put all of the E&D forms you have collected and Publicity Consent forms you have collected in to this envelope and send it to Brendan at: Brendan Warner-Southwell, 43-47 Wellington Street, S1 4HF. If you have conducted any interviews where you have collected written notes rather than audio/video files, place the notes for these interviews in this wallet as well. I have read, understood and will comply with all of the stages which have been stipulated in the above process:

Signed:……………………………………………………… Date:…………………………………………………………

Appendix D: Break down of results from Co-design Activity Covered at Lee Gap Horse Fair

Documents

Gypsies and Travellers in Doncaster Report