Insrt Image Looking Beyond the Symptoms

INSRT IMAGE LOOKING BEYOND THE SYMPTOMS:

A Report of the Health and Well-being

Needs of BME Patients in 3 Surgeries in Brighton and Hove March 2016

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

CONTENTS Page Introduction 3 Objectives 3 Roadmap of the report 4

Research Methods 5 Mapping 6 Accessing the sample group 6 Field notes in surgeries 6 Interviews with practice managers 7 Strengths and limitations 7

Key Findings from the Mapping 9 Context for the study 9 Brighton Health & Wellbeing Centre 13 The Avenue Surgery, Moulsecoomb 16 Mile Oak Surgery, Portslade 19

Findings from the Surgeries Interviews 21 Brighton Health & Wellbeing Centre 22 The Avenue Surgery, Moulsecoomb 24 Mile Oak Surgery, Portslade 25

Interviews & Focus Groups Findings 27 ESOL Class, Mile Oak Surgery 27 Japanese Women’s Group, Brunswick. 28 Bangladeshi Women’s Group, Avenue 29 BME Young People Football, Avenue 29 Chinese Elders Group 30 Mosaic Under Fives Group 30

Common themes across BME groups 32 What makes a good doctor 32 The Importance of a good Reception 33 Cultural Understanding 33 Seeing the same GP 33 Communication 34 Health and Wellbeing 34

Case Studies 38 Analysis 43 Recommendations 45 Conclusion 47 Appendices 1 – 6 48

The Research Team Yaa Asare Community Researchers: Sabah Kaiser, Nagwa Bilal, Aleya Khatun, Maliga Banner

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

LOOKING BEYOND THE SYMPTOMS Introduction Objectives of the project This Black and Minority Ethnic (BME) Mapping and Research report was commissioned by the Engagement Officer of Brighton and Hove Clinical Commissioning Group on behalf of the Brighton & Hove BME Health Needs Assessment Group. It was carried out by The Trust for Developing Communities in collaboration with Yaa Asare. The aims of the research are as follows:  to ascertain the health needs of marginalised BME individuals (and communities) around three surgeries

 to get as close to people’s experience as possible, and with their support to assess what needs to be put in place to better meet people’s needs

 to gain information about what exists already in these areas as a source of either support or a cause for concern - to investigate available services and to consider, with local people, issues around access and appropriateness

 to carry out a local mapping exercise in three surgeries to find out the demographics of the local community, focussing on ethnic groups and ascertaining - age groups, employment rates, types of housing, available services/groups that exist locally. Also to get an idea regarding the transience or long term settlement in the area

The research was carried out in and around three surgeries in Brighton and Hove: The Avenue surgery in Moulsecoomb, Brighton Health and Wellbeing Centre (BHWC) on Western Road in the city centre and Mile Oak Medical Centre, Portslade. These surgeries were identified because it was felt that they served particular BME communities that were considered to be particularly marginalised. The research was carried out between October 2015 and March 2016. A mapping exercise of the three surgeries and surrounding neighbourhoods was first undertaken. Interviews and focus groups at the surgeries took place in January and February 2016. Participatory, qualitative research methods were used to enable people to express their views and experiences and to get an understanding of the health and wellbeing of BME patients who use the surgeries.

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Roadmap of the report This report first describes the research methods used and their limitations. The report then outlines the mapping and its findings about each of the three surgeries and their surrounding neighbourhoods: Brighton Health and Wellbeing Centre in Brunswick; The Avenue Surgery in Moulsecoomb; and Mile Oak Surgery in Portslade. The mapping provides context, and helped us to identify ethnic groups in the area and services and facilities available locally. The report then considers the findings of the interviews at the three surgeries with practice managers and BME patients. It considers the use of the surgery by different ethnic groups, and people’s experience of using the surgery and living in the local area. The report outlines the key findings from the interviews and focus groups with the ESOL Class near Mile Oak Surgery; Japanese Women’s Group near Brunswick Surgery, Moulsecoomb Bangladeshi Women’s group near the Avenue Surgery, Moulsecoomb; BME Young People Football Sessions, near The Avenue Surgery, Moulsecoomb; and also the Chinese Elders Group and Mosaic Under 5s Group. As well as specific findings from these focus groups, the report outlines common themes across BME groups, relating to their experiences of using the surgeries and issues relating to their health and wellbeing. It describes three case studies in detail, as these provide an insight into the reality of the experiences of BME respondents and a more holistic picture of their circumstances and concerns. The report provides an analysis of this small scale research carried out in the three surgeries. Given that outreach was carried out in the waiting rooms, this research represented a unique opportunity to speak to people who may not be members of BME support groups, and thus may represent some experiences of more marginalised BME individuals. Finally, the research points to important recommendations and concludes with the key issues that have been raised in the research through outreach to people at surgeries about their experiences. Whilst diverse communities may have needs that differ in some respects, the commonality of experience of BME communities around isolation and marginalisation; racial harassment and a lack of knowledge about services, are critical, common issues that this research report has revealed.

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Research Methods

Most of the mapping work was carried out through internet research and visiting the neighbourhoods. The remit of the surgeries research was to get an understanding of the health and wellbeing of Black and Minority Ethnic patients who use the surgeries. In particular this research set out to express their views and experiences as accurately as possible and to base the analysis and recommendations on this information. We were able to identify community groups through the mapping and the surgery research. Between October 2015 and January 2016 the following tasks were carried out;  Recruiting the team of four community researchers  Preparing questionnaires to find out the experiences and views of BME patients; piloting questionnaires and redrafting  Preparing focus group questions  Establishing links with practice managers of the surgeries and arranging schedule to meet with patients  Devising an information introductory leaflet and arranging for translation into the four most common languages, Cantonese, Arabic, Bengali and Farsi  Meeting with various interest groups and community groups as background preparation and to set up focus groups  Meetings with relevant stakeholders, to inform them of this work and to ensure mutual support and ensure no duplication  Attending Black History Event in Moulsecoomb to begin the process of meeting with potential patients at The Avenue surgery

The rest of the project, from January to March 2016 involved  Meeting BME patients to find out their needs in the waiting rooms of surgeries and where possible arranging and carrying out interviews  Conducting focus groups in the surgeries and with key BME groups and conducting individual interviews in those groups  Writing up the research

The mapping exercise was carried out by one of the members of the research team. The three researchers carrying out the interviews and the focus groups were Community Champions (who were among those who had attended an accredited course at the Black and Minority Ethnic Community Partnership to learn basic and practical qualitative research methods). Pilot questionnaires were carried out by the research group and then the questions were refined within the team.

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Mapping Mapping of the three surgeries and their surrounding areas was carried out, focusing on the following:  community facilities surrounding the surgeries - sports club, community colleges, preschools etc. and whether these carry out ethnic monitoring?  statistical information about populations of all three areas, e.g. the proportion of older people, under 16s, crime figures (including hate crime), types of housing  local amenities - play parks, NHS dentists, shops, ESOL support, advice services, sports facilities, youth clubs  any environmental issues, local social issues  photographing the key surgeries

Accessing the sample group

Initial contact was made with the surgery practice managers; the CCG Community Engagement manager facilitated this. The research remit was to focus on the experiences of those BME patients who used the particular surgeries. For reasons of patient confidentiality, it was not possible to have access to patients’ addresses or phone numbers so the patients needed to be approached in the surgeries. Researchers spent a few hours a week in each of the surgeries’ waiting rooms, identifying people who were BME and arranging to interview them. The practice managers had facilitated interview space in each of the surgeries. We were introduced to the reception staff who were made aware of our presence in the waiting rooms and supported the process by making our translated leaflets (Appendix 1) available to patients. ‘Field notes’ in surgeries Observation notes were taken in the waiting rooms. On several occasions, particularly at Mile Oak surgery, we recorded that we sat in the waiting room for two hours without seeing a single BME patient. One of the limitations of the research was that it required the researchers approaching people in waiting rooms. As the researchers were all active in BME communities, a few of the patients were already known to us, so it did not seem appropriate for us to interview them (for reasons of confidentiality). In some cases, the patients themselves declined to be interviewed, a position which was respected by the researchers. One couple in the waiting room told us they were Syrian and we wondered whether they may have had to participate in numerous interviews and investigations and just wanted to be left alone to wait for their appointment. On other occasions, it seemed as though the very poor levels of English that some patients had led them to be reluctant to subject themselves to be interviewed. However, we were fortunate that the majority of patients that we approached agreed to be

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016 interviewed and the surgeries all provided space in which the interviews could be conducted. Interviews with practice managers At the outset of this research interviews were carried out with the practice managers of Brighton and Hove Health and Wellbeing Centre and the Mile Oak Surgery, and with a doctor at The Avenue surgery (Appendix 2). Questions were asked to gain background information of the context of their patch and to raise any pertinent issues that could inform our approach. We also wanted to get a sense of the numbers and percentages of BME patients in the surgeries and to gain an understanding of which ethnicities were seen to be prevalent. Unfortunately none of the practice managers were able to provide us with lists, which specified the ethnicities of the patients attending their surgeries, although they did state that ethnic monitoring of patients did take place. The process of interviewing the practice managers can be seen as an extension of the mapping exercise, giving a more nuanced impression of the area and the BME families within it. An additional reason for carrying out this initial questionnaire was to give the practice managers and the doctor background information about this research and get their permission to give out leaflets to publicize this research to BME patients, to carry out our research initially in the waiting rooms and then in break-out rooms. We also needed to seek permission to carry out a focus group in each of the surgeries at which light refreshments would be provided. The interviews were analysed and findings are outlined below. Strengths and Limitations of the research The research used ethnographic style, qualitative methods, to gain a closer understanding of participants and their perspectives and experiences, including field work observations, open ended questions, focus groups, community mapping and photographs. A wealth of information was obtained relating to people from BME communities’ experiences of health and wellbeing. Whilst we hoped to gain insights into discrete communities, access issues, time constraints and the need to focus on specific surgeries made it difficult to draw conclusions relating to specific BME communities. What came out clearly in the research were the varied experiences of those who were of a BME background and some striking commonalities. Factors were identified that impact profoundly on people’s wellbeing, which are critically important to recognise and address, as outlined in the recommendations section of this report. The research methods enabled us to triangulate case studies, interviews and focus groups to enable a greater understanding and to stress the relevance of certain themes. The individual case studies are valuable and have pointed out particular concerns and experiences. However, claims cannot be made as to single stories

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016 being representative of whole communities. In particular in looking at these stories, it is important not to make generalisations that in any way suggest that BME communities or ethnicities are homogenous groups. Work is currently taking place to find out more about specific ethnic groups’ health needs through in depth ethnographic research. This undertaking will need to be built on trust and offer something back to the communities themselves. It is important to stress that the findings here have illuminated the experiences of BME patients who are not linked to community groups. The research remit was to look at the experiences of BME patients from specific surgeries and within the time frame it was not possible to identify, access or investigate in depth any specific groups who may have used them Our research team was fortunate to include Community Champions who were able to bring insider- knowledge of being involved in their own communities into their interactions with people that they spoke to and thus, the research is informed by an insider-perspective which gives a deeper insight. Our team were largely successful in being able to use their networks for greater outreach, particularly with accessing community groups. One of our team, herself a Muslim, tried very hard to establish an interview with representatives of the mosque. Continued efforts would need to be made to build such research relationships. The time to build trust with marginalised groups needs to be re-emphasised when considering the barriers that need to be overcome in carrying out this type of ethnographic-style research.

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Key findings from the Mapping Context for the study

According to the 2011 Census in Brighton and Hove  There is a higher than average proportion of residents who class themselves as being Other White at 7.1% (19,524 people), compared to 4.6% nationally and 4.4% in the South East region.  There are fewer than average Asian or Asian British residents at 4.1% (11,278 people) compared to 7.8% nationally and 5.2% in the South East region  There is a higher than average proportion of residents of Mixed or multiple ethnicity at 3.8% (10,408 people) compared to 2.3% nationally and 1.9% regionally.  There is a lower than average proportion of Black or Black British residents at 1.15% (4,188) compared to 3.5% nationally and 1.6% in the region.  There is a higher than average proportion of Arabs (the term used in the Census) at 0.8% of the population (2,184 people) compared to 0.4% nationally and 0.2% in the region.  According to the 2011 census 20% of our population (53,351 people) were from a BME background.  The cities’ minority ethnic communities grew significantly in number and proportion between 2001 and 2011. The largest increase in the number of people in an ethnic category is in the Other White category.  42% stated that they had no religion in the 2011 census. The largest religious group is Christian at 43%. Muslim community is the largest non-Christian religion in the city at 2%.

2011 Census: QS211EW Ethnic group (detailed), local authorities in England and Wales

According to the 2011 Census, 20% of Brighton and Hove’s population are BME. The 2011 Census points to a significant increase in the BME community, particularly from the Other White category. The BME needs assessment1 and 2011 Census2 identify the biggest ethnic group as other white, at 7.1% of the population (mainly W European, Polish and other E European); followed by Asian or Asian British residents at 4.1% (including Indian, Pakistani, Bangladeshi and Chinese). Then Mixed or multiple ethnicity at 3.8% Black or Black British residents at 1.15%; Arabs (the term used in the Census) at 0.8%. For 8% of residents aged 3 years and above English is not their main or preferred language. The main languages other than English are Arabic, then Polish, then Chinese. Within these statistics, there is great diversity. There is a need to consider the complexity of defining ethnicity and the super diversity of communities in Brighton and Hove. 3 The Sussex Interpreting Service’s (SIS) clients represent 67 different languages (see their language map to appreciate the diversity represented across Sussex)4 . SIS’s greatest demand for translation in 2014-15 is Arabic, followed by Polish, Farsi, Bengali, then Mandarin.5

1 Black & minority ethnic communities in Brighton & Hove: A snapshot report. December 2013 http://bmecp.org.uk/wp- content/uploads/BME-Communities-Snapshot-report-final.pdf 2 2011 Census: QS211EW Ethnic group (detailed), local authorities in England and Wales 3 Mike Holdgate CCG report (ref) 4 http://www.sussexinterpreting.org.uk/docs/SIS%20Language%20Map.pdf 5 http://www.sussexinterpreting.org.uk/annualreview/2014-15/sis-annual-review-14-15-EN-lo-res.pdf

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

National data shows that BME groups experience particular issues which impact upon health, mental health and wellbeing. National data suggests that ethnic minority children have an above-average propensity to be living in poverty. Nationally, pupils from the following ethnic groups have lower GCSE attainment: Traveller or Irish Heritage and Gypsy/Roma; Black Caribbean; Pakistani; Other Black and Mixed White and Black Caribbean. National data shows that there are particular health needs amongst particular ethnic groups. For example, child obesity is higher among some ethnic groups, particularly Asian British and Black British groups. People from different minority ethnic groups experience different disease patterns and can also experience different levels of access to services. Other factors impacting on people’s health and wellbeing are that BME groups in the city are more likely to experience housing need. They are at an increased risk of experiencing racist or religiously motivated crime.6 According to 2011 census data the employment rates for BME residents and White British residents shows a variation between ethnic groups. ‘Other White’ residents have the highest employment rates (71%) and Chinese residents have the lowest (35%).7 Map 1.Brighton & Hove Index of Multiple Deprivation Ranking in England 2011 Census

6 Brighton & Hove City Snapshot: Report of Statistics (2014). Available at: www.bhconnected.org.uk and http://www.bhconnected.org.uk/sites/bhconnected/files/BME%20Mental%20Health%20study.%20Brighton% 20%26%20Hove.%20June%202012%20Final.pdf And Strategic Assessment of Crime & Community Safety 2013 7 2011 Census data taken from ONS DC6201EW

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Brighton & Hove has a comparatively high prevalence of people on a GP register for psychoses or severe mental illness (1.1%, 3,335 people). These statistics were not broken down further by ethnicity. 13% of people aged 18 years or over (31,044 adults) were included on a GP register for depression. Brighton and Hove follows the National trend for twice the rate of mental health admissions among people from a BME background and lower uptake of primary mental health care services. 8 “It has been suggested in the literature that individuals from these communities may be at a higher risk for psychotic illness due to social and economic disadvantage and the experience of racism, and that they may not be offered a wider range of alternatives by health professionals due to discrimination. They may also delay seeking help for mental health conditions until they have worsened considerably due to stigma, fear and mistrust or chose not to be remain in contact with community mental health services due to dissatisfaction with previous experiences.” 9 Existing research into health needs of BME communities in Brighton and Hove points to a need for more awareness, including the ability to recognise signs that may signal the onset of a mental health problem and knowledge of ways to maintain wellbeing. BME communities have pointed to the stigma associated with mental health difficulties including disclosure leading to isolation from their communities. Some GPs were thought to be unsympathetic. Socio-economic factors such as poverty, debt, housing and employment were all identified as being key reasons for people from BME communities feeling stressed, with these communities being recognised as being over represented in these indices of deprivation. People felt they needed better support for referrals. There was concern over long waiting lists, complicated assessments and confidentiality over sharing data records. One of the biggest causes of mental ill health was people having to suppress their culture within a more dominant one. This means that many people see that they need to be something other than themselves in order to fit in. If people are able to practice their culture, they feel more at ease, comfortable and will have better wellbeing outcomes10 The need for health workers to be sensitive to possible cultural or religious perspectives is highlighted by research by Community Development Workers, who gave the example of a BME woman’s frustrated wish to bring her cultural and

8 BME Needs Assessment 2013 and http://www.bhconnected.org.uk/sites/bhconnected/files/BME%20Mental%20Health%20study.%20Brighton% 20%26%20Hove.%20June%202012%20Final.pdf p9 9http://www.bhconnected.org.uk/sites/bhconnected/files/BME%20Mental%20Health%20study.%20Brighton %20%26%20Hove.%20June%202012%20Final.pdf p9 10 The Healing Village event March 2015 and All Our Voices June 2014

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016 religious understanding and beliefs into the Hospital Care Plan by including prayer and meditation into the package.11 Issues of language and interpreting have been highlighted as a major issue in a number of consultations.12 Participants from the Oromo community provided many examples of how language impacted on people, including one person who used the phone translation service during a GP consultation. “…The doctor seemed to be getting frustrated…... At the end of the meeting, the doctor told me next time to bring a friend/family to interpret for me, as the language line takes too long.” “My husband was sick and I was very worried. I pleaded with him to go to the doctor. I even had my family come round to try and persuade him to go but he said no, it is too difficult for me as I can’t be understood and I don’t know what the doctor is saying.”13 The translation needs to be appropriate. A SIS interpreter said: “Interpreters sometimes try to translate the English version but this is very complicated! Clients may not be able to understand, even in Chinese. They may not understand a concept culturally (e.g. privacy) and may not necessarily see the GP as an authority – so the language may actually be irrelevant.”14 Different BME groups recommended health information and consultation be done through culturally appropriate spaces, for example the Polish community suggested the Polish Church, the Polish shops, www.brighton.pl Polish community website, and to have a Polish speaking GP doctor and pharmacy (people have more trust in a doctor or pharmacist that speaks their own language and this builds trust in the NHS. Spanish speaking community said it was important to recognize the different sub- groups, for example Cubans. Giving information to a few key people would then ensure it was distributed effectively. Also Catholic churches and the bi-lingual school. The Chinese community (Mandarin and Cantonese speaking) said the BMECP and Chinese Elders Group was a good place to share information with the community, as well as, EMAS bilingual support for schools, the Chinese Church on the Lewes Road. They also emphasized the importance of going through the SIS interpreters who were able to explain it personally, helping to understand the information, rather than just giving leaflet.15 The issues highlighted here provided context and informed the interviews and focus groups with specific groups around the surgeries.

11 Interview with SB, SK, KC at Millwood Community Centre, 17th February 2016 referred to in Y Asare, “Psychosocial and engagement work overview - a summary report” 2016 12 The Healing Village event March 2015 and All Our Voices June 2014 13 TDC, SIS, HKP, CCG BME Consultation on Record sharing, David Pinder and Joanna Hill Oct 2014 14 ibid 15 ibid

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

The Surgeries Brighton Health and Wellbeing Centre

Brighton Health and Wellbeing Centre BHWC, 18-19 Western Road Hove BN3 1AE. 01273 772020. Opening times 8.30am to 6.30pm Monday/ Wednesday/Thursday and Friday; 8.30am to 8.00pm Tuesday; 8.30am to 11.30am Saturday

An integrated NHS GP Practice and Healing Arts Centre. BHWC awarded winner ‘Innovators of the Year’ General Practice Awards 2014. Founded in July 2013 by Gary Toyne (Managing Partner), Dr Laura Marshall-Andrews (Clinical Partner) and Chris Dance (Complimentary Health Partner) in recognition by the NHS that conventional medicine did not always hold all the solutions to an individual’s health problems. The surgery runs a Healing Arts Centre including: literary, visual and performance arts; and singing groups. They offer a holistic health service; medical reports; health checks; health monitoring; vaccinations/immunisations; patient participation group. They encourage their patients to see the same GP. The centre offers 10 or 15 minute appointments

Therapies are not offered on the NHS but the Centre offers assistance to low income families. Services include: acupuncture; Cognitive Behavioural Therapy (CBT); Chinese herbal medicine; counselling; homeopathy; massage; nutrition; osteopathy; Pilates; podiatry; psychotherapy; reflexology; relationship therapy and yoga.16

Map of Brighton Health & Wellbeing Centre and Brunswick neighbourhood.17

Children’s Centres Libraries Pharmacies

School or Colleges GP Practices Research Surgery Location

16 Brighton Health and Wellbeing Centre (July 2013) Leaflet 17 http://www.brighton-hove.gov.uk/localview

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Brunswick Road Dental Practice and Brunswick Square Dental Practice are NHS dentists servicing the BN3 1AE catchment area. BME community in Brunswick There are 10,210 people living in Brunswick ward. 12% of children are living in poverty. 7% of people over the age of 16 have no qualifications. 45% of people aged 16-64 are in full-time employment in Brunswick compared with 39% across England. 2,765 BME people live in the Brunswick ward. The proportion of people who identified their ethnicity as: mixed race was 4.3%; Asian 3.8%; Black 1.3% and those identified themselves as other ethnic groups at 0.9%. Of the BME community in Brunswick 2,425 were born outside the UK with 25 households in which no adults but some children have English as main language.18 30.5% of the Brunswick population are migrants (2011 Census). The catchment area for Brighton Health and Wellbeing Centre shows a population of 9.2% aged 0-15; 83.4% of working age 16-64 and 7.4% aged 65+. A fifth of all adults (less than 5%) are full time students.19 16% are non UK born. 20 In 2015 the employment score for the surgery’s catchment area was between 5.6% and 8.1%. This counts as one of the 19 most deprived in England. 21 Facilities near BHWC include: King Alfred Leisure Centre with a pool, gym and good sports hall; The Hove Mind Sports Club, Sussex Multisport club on First Avenue. Within the catchment area is City College, St Andrews Community and Amigos preschools, Brunswick Primary School and St Andrew and St Paul’s C of E Primary Schools. Brunswick is very close to the seafront with ample amenities for children. There are four mosques near Brunswick: the Muslim Community Centre, called Al- Quds, on Dyke Road, the Mosque & Brighton Islamic centre at Caburn Rd, Medina Mosque and Al Madina in the centre of town

18 OSCI ‘Local Insight profile for Brunswick and Adelaide area’. Available at: www.brighton- hove.communityinsight.org (Accessed: 1st December 2015) 19 Brighton & Hove City Snapshot: Report of Statistics 2014. 20 Brighton & Hove City Snapshot: Report of Statistics 2014. 21 Brighton & Hove City Snapshot: Report of Statistics 2014.

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Near Brunswick there are 3 Synagogues: Brighton & Hove Reform Synagogue; Brighton & Hove Progressive Synagogue and Hove Hebrew Congregation. There are many churches in the area, including St Johns, St Patricks Roman Catholic Church, Holland Rd Baptist Church, Brighton Spiritual church and French Protestant Church. There is St Mary and St Abram’s Coptic Christian church with a large Egyptian and Sudanese Coptic community. There is also a Bodhisattva Buddhist Centre. There are two Youth Centres located in Brunswick area: Young People’s Centre, 69 Ship Street and Sussex Central YMCA 47 Church Road. BHWC is on Western Road in the heart of Brighton and its shopping centre. Taj Mahal store, a supermarket of halal ethnic minority foods is central to the area. ‘hkproject’ community project conducted by The Young Foundation in October 2011 and explored BME communities in Brunswick for Brighton & Hove County Council. It showed that the Local Action Team held bi-monthly public meetings to discuss local policing priorities and Brunswick and Regency Neighbourhood Action Group raised issues of concern including anti-social behaviour. It also showed that residents in the area had a high satisfaction with parks and green spaces. A negative aspect of the area was in the condition of housing.

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

The Avenue Surgery, Moulsecoomb

The Avenue Surgery, 1 The Avenue, South Moulsecoomb, Brighton BN2 4GF 01273 604220 – www.theavenuesurgerybrighton.co.uk Dr Robert Hacking – Dr Roger Winter – Dr Sonia Gupta Opening Hours Monday to Friday 8.30am to 12.00pm then 3.00pm to 6.30pm The surgery asks for patients to register within their practice area: Moulsecoomb, Bevendean, Coldean, Falmer, Hollingdean and the area of Brighton North of Elm Grove. All clinical rooms are located on the ground floor including accessible toilet facilities The surgery offers: Ante-natal Care; Child Health Surveillance and Immunisations; Contraception and Sexual Health; Adult Immunisations; Travel Vaccination; Minor Surgery; Post Natal and 6 Week Baby Checks; Smoking Cessation; Young Persons’ Sexual Health Clinic and Health Promotion. The Surgery houses two Practice Nurses, a Health Care Assistant, a Practice Manager and a team of receptionists. The surgery offers its patients the use of Sussex Interpreting Services if required.22 There are NHS dentists nearby on the Lewes Road: ABC Dental Surgery and Dental Care in Falmer.

Map of The Avenue Surgery and Moulsecoomb neighbourhood.23

22 The Avenue Surgery (March 2015) Leaflet 23 http://www.brighton-hove.gov.uk/localview

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

BME Community in Moulsecoomb There are 25,360 people living in Moulsecoomb. 37% of children are living in poverty, compared with 19% across England (see deprivation map above); 20% of people have no qualifications, compared with 22% nationally. The BME population is 1,605 Asian; 780 Black; 2,885 other ethnic groups and 1,300 households with multiple ethnicities. Of the BME community 3,795 people were born outside the UK, with 45 households, with no adults but some children, having English as their main language.24 The proportion of people who identified their ethnicity as mixed race was 3.8%; Asian 9.4%; Black 3.1% and other ethnic groups 0.7%. Migrants that have settled here are 29.1%.25 42.8% of the population are Christians; Muslims 2.8%; Hindus 0.9% (275 people); 1% stated their religion as ‘other’. In 2014 Moulsecoomb had a population of 15.8% aged 0-15; 75% of working age 16- 64 and 9.2% aged 65+. A third of all adults here (4,737) are full time students. Moulsecoomb ranks high in ‘hard-pressed living’: residents experience financial difficulties, with high levels of people in terraced accommodation, unemployment and a large proportion of people employed in manufacturing. 86% of the residents stated that people from different backgrounds got on well together in their local area.26 There are opportunities for health and fitness in the local community including: Moulsecoomb Community Leisure Centre with a fitness complex, floodlit pitches and a gym. Moulsecoomb is surrounded by open green fields and parks including East Brighton Park and Saunders Park, off Lewes Road. Within the catchment area is Brighton Aldridge Community Academy Secondary school and The Co-operative Childcare preschool. There are two primary schools: Moulsecoomb Primary, and Bevendean Primary. There are no mosques or temples in Moulsecoomb. There are three churches: St Lawrence Falmer, Howard House Church and St Andrews Church near the surgery. The Avenue Surgery is walking distance from Lewes Road, offering an array of shops ranging from Chinese Asian to European and Black shops and cuisines. The 67 Centre is a youth centre in Moulsecoomb on Hodshrove Lane. The 67 Centre offers many services for young people aged 16 - 18 in Brighton & Hove including: youth employability services, mental health, counselling & wellbeing.

24 OSCI ‘Local Insight profile for Moulsecoomb area’. Available at: www.brighton-hove.communityinsight.org (Accessed: 1st December 2015) 25 2011 census 26 Local Insight profile for Moulsecoomb and Bevendean (2014). Available at: www.bhconnected.org.uk (Accessed: 1st December 2015)

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

A community project called ‘Moulsecoomb Inclusion Project’ conducted a community audit in November 2005. Exploring BME communities in Moulsecoomb on behalf of Brighton & Hove County Council, this study showed that:  Many BME residents felt isolated, experienced harassment, lacked support  There was low level involvement in local community based activities and use of facilities by BME residents  Agencies had struggled to engage different communities and there was a lack of partnership work to guide the development of strategic initiatives  Nearly a fifth of the BME respondents cited racism as a regular problem  The Bangladeshi community had been identified, during the community research conducted in 2005, as the largest minority in the area  The local Bangladeshi women were concerned about community safety  Of the twenty BME respondents only one was happy to remain in the area

TDC provide community development support, based at St George’s Hall, Newick Road, which is run by a team of resident volunteers. TDC helped establish a Bangladeshi Women’s group to increase both confidence and knowledge about the services available. Services available include: Cancer Screening advice and support; Housing advice; Police Liaison Officer; English classes tailored for women; women only swimming sessions.

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Mile Oak Surgery, Portslade

Mile Oak Medical Centre. Chalky Road Portslade Brighton BN41 2WF. 01273 426200 www.mileoakmedicalcentre.nhs.uk Providing NHS services and clinics to residents of Mile Oak, Portslade, Hangleton, Fishersgate and parts of Shoreham-by-Sea. Health visitors, physiotherapists, midwives, audiologists, podiatrists, dermatologists and various other clinics.

Dr Sally Barnard/Dr Chloe Webber/Dr Abigail Fry/ Dr Adam Onyett. Associates – Dr Nupur Verma & Dr Anna Godwin; Practice Business Manager Rick Jones; Advanced Nurse Practitioner Angela Goodall.

Opening hours Monday to Friday 8.30am to 6.00pm; Extending opening hours on Thursday evenings from 6.30pm to 7.30pm. Disabled access – extra wide doors and corridors easily accessible toilet and lift to the first floor with feature offering assistance to the visually impaired a hearing loop at reception and a portable hearing loop to use in other parts of the building. On site pharmacy Services available: Children’s Immunisation; Cervical Smears; Contraceptive Service; Minor Operations and Dermatology; Travel Abroad Immunisations; Services for Young People; Mental Health Service; Medical Services Not covered by the NHS and Sickness Certification27 Portslade Dental Centre is an NHS dentist on St Andrews Road and The Old Village Dental Centre serve the BN41 2WF catchment area. Map of Mile Oak Medical Centre and Portslade neighbourhood.28

Mile Oak is situated in Portslade Ward. However for the purposes of parts of this report, the area of research has been narrowed down, using the ‘Mile Oak Library Catchment Area’ as defined by Brighton Local Insight Profile.

27 Mile Oak Medical Centre (Autumn 2015) Leaflet 28 http://www.brighton-hove.gov.uk/localview

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

There are 8,615 people living in Mile Oak. 19% of children live in poverty (see deprivation map above) and 24% of over-16s have no qualifications in Portslade. There are 745 BME people. The proportion of people who identified their ethnicity as: mixed race was 2.3%; Asian 2.2%; Black 1% and those identified themselves as other ethnic groups at 0.2%. Of the BME community in Mile Oak 520 people were born outside the UK but there are no households with no adults but some children who have English as main language.29 Migrants that have settled in Mile Oak make up 7.3% of the population.30 Christians living in Mile Oak make up 56.3%; Muslims 1.2%; Hindus 0.4% with the population who stated their religion as other at 0.6%.31 Mile Oak has a population of 20.2% aged 0-15, a population of 62.3% of working people age 16-64 and 17.5% aged 65+. A fifth of all adults in Portslade and Mile Oak (less than 5%) are full time students32. Facilities surrounding Mile Oak Surgery include: Portslade Sports Centre on Chalky Road (Freedom Leisure, not for profit). Portslade Aldridge Community Academy, PACA Adult Learning Centre, located on Chalky Road is a secondary school and sixth form; Southern Cross Preschool. Mile Oak Surgery is very close to Mile Oak Recreational Grounds. Mile Oak Primary School is located on Graham Avenue. Shri Swaminarayan Temple is on Portland Road and Portslade Baptist Church are located in the area. Shahjalal Masjid is on Portland Road in Portslade and managed by a Bangladeshi. The Village Centre, Windlesham Close, provides a youth service for young people aged 13-19. Mile Oak Community Centre provides space for events, amateur sports and community-based activities. Mile Oak Farm covers 1100 acres on the South Downs, with a farm shop offering local delivery. Portland Road offers an array of multicultural shops including:; Portland Grocery Selling Asian & Eastern foods including halal foods, Down to Earth Health Food Shop. For Mile Oak Surgery residents there are cluster of shops available to residents near the Recreational Grounds within walking distance.33

29 OSCI ‘Local Insight profile for Mile Oak Library area’. Available at: www.brighton-hove.communityinsight.org (Accessed: 1st December 2015) 30 (2011 Census) 31 OSCI ‘Local Insight profile for Mile Oak Library area’. Available at: www.brighton-hove.communityinsight.org (Accessed: 1st December 2015) 32 Brighton & Hove City Snapshot: Report of Statistics 2014. 33 Community Insight Brighton & Hove Available at: www.brighton hove.communityinsight.org (Accessed: 01/12/15) Brighton & Hove City Snapshot: Report of Statistics (2014). Available at: http://www.bhconnected.org.uk (Accessed: 01/12/16)

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Findings From the three surgeries The responses of the practice managers from two of the surgeries and a doctor from the other and the patients’ responses that are particularly pertinent to the specific surgeries are discussed in this section. All the ethnicities attributed to the responses are ones that are used by the patients to self-define. The only exception is with two patients who are of mixed race, as specifying their specific ethnicities could possibly breech confidentiality. Interviews with BME patients in the surgeries The charts in Appendix 3 show the ethnicities of those BME respondents who were interviewed in the three surgeries. The interviews used can be seen in Appendix 4. Pie chart to show the ethnicities of BME patients interviewed in the surgeries34

African Not given Polish Indian Turkish African American African Caribbean Greek Mexican Asian Arabic Bangladeshi Italian

The pie chart is a clear indication of the great diversity of the respondents. The largest group interviewed were African (26%); followed by African Caribbean (11%) and Greek (11%). Others interviewed were Polish, Indian, Turkish, African American, Mexican, Asian, Arabic, Bangladeshi and Italian. They were mainly between 46 and 55 years of age. The large majority were women. The figures show the make-up of the respondents who were involved in the research. As the surgeries were unable to share the surgery ethnic breakdowns, it is not possible to relate the figures to the wider ethnic breakdown of the surgery area.

34 See Appendix 3 for further details.

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Brighton Health and Wellbeing Centre (BHWC); When we interviewed the practice manager, it was expected that the percentage of BME patients would be about 5%. On checking with surgery monitoring it was 10%. The practice manager said that annual ethnic monitoring was carried out as a statutory requirement although the results were not used in a specific way within the surgery. It was felt that despite a large Arabic population locally, they did not seem to be enrolled at the surgery in significant numbers. Further research could be carried out to investigate with which surgeries members of this local Arabic population were involved; and if they are not using the surgeries, why not. The largest ethnic group attending the surgery was seen to be Eastern Europeans. (This information was given by the surgery during interview but the monitoring data could not be given to the researchers). From the mapping above, we know that the largest BME group are other white; followed by mixed race, Asian, and Black. The mapping implies through places of worship that Muslim, Jewish and an Egyptian and Sudanese Coptic communities are present. However, the surgery could not provide the BME monitoring to draw conclusions on this and it would need to be the subject of further research. Diabetes was recognized by the practice manager as being a specific, well- documented health problem associated with Black and minority patients. Diabetes was mentioned by several respondents in the focus groups, but further quantitative research would need to be done to make inferences about specific health issues. Reasons for attending this particular surgery Most of the patients interviewed attended BHWC because it was local to them although there were also other reasons for attending, including the surgery’s positive promotion and publicity. ‘It’s convenient and although I’ve moved away, I still come here. It’s comfortable and up to date’ (Turkish woman) Most of those interviewed had no connection to wider BME community groups in the area, so we could not ascertain whether there were particular health or access issues for specific community groups.35 Satisfaction with the surgery Four of the ten respondents reported total satisfaction with the surgery. Some of the others were more hesitant to express total satisfaction, made the following additional comments. The Greek couple, who appear in the case study below, felt overwhelmed by ‘the system’ and their inability to negotiate it.

35 This particular woman was a university student. A theme of the research seems to be that most BME respondents that we addressed in surgeries were not part of community groups. We can suggest that it is likely that a very small minority of Brighton BME people are active members of community groups

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A woman, who suffered with a serious health condition, had recently experienced difficulties in making an appointment, ‘Yesterday it took me 17 minutes for my call to be answered for an emergency appointment’ (Turkish woman) Another woman got off to a bad start but is now very positive about the surgery, They lost my registration details originally and I was concerned but since then I’ve been happy. I’ll ring the surgery and the doctor will ring me back. I can be seen on the same day. They have a phlebotomy service so I don’t have to go to hospital for blood checks … They also offer alternative services, I think at some considerable expense and I haven’t looked into it yet…. They have a rolling programme of arts and good magazines…(Asian woman) What do you like about living where you do? Many people across different ethnic groups referred to the pleasant environment, being near the sea, and Brighton’s culture. The findings of this section emphasise shared experience between ethnicities – the commonality of people’s experiences of the city, despite differences in ethnicity. ‘Its crime free’ (Gambian woman) ‘The sea, the sea gives me solace and the excitement of its ever changing colours’ (Asian woman) ‘It’s quieter than London‘ (Greek man) ‘‘I love Brighton life’ (Polish woman) ‘Brighton has an open-minded culture’ (Mexican woman) One woman, living away from her family spoke about how she relished her independence, ‘My own way of living, my independence and making my own decisions’ (Indian woman). Although, ironically it was this same isolation that also concerned her about living in the area. ‘The multicultural aspect of the place and the friendliness’ (Arabic woman) Is there anything you do not like about living where you do? Almost half of those interviewed could not think of anything that they didn’t like about living in the area. One of the responses to this question concerned his perception of others’ attitudes and behaviour towards him, ‘People can be reserved’ (African man) Another referred to missing family and friends ‘Not having family around, not having company’ (Indian woman) For another it was her family’s accommodation that was the problem,

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‘I would like a bigger flat, more space’ (Polish woman) Others referred to the high cost of living in Brighton and Hove, The buses are very expensive’ (Greek man)

The Avenue Surgery Based on discussion with the doctor at this surgery, it was felt that there was a relatively small population of BME patients that attended the surgery and that lived in Moulsecoomb. There were a higher number of students living in Moulsecoomb than anywhere else in the city with 18% of the local population being in Higher Education. A significant percentage (not known) of these students were BME. Ethnic monitoring is carried out in line with Government regulations but nothing is done with the figures. There was known to be a Bangladeshi community in the area, also some African patients but not many from Eastern Europe. Moulsecoomb was known to be among the 10% most deprived areas in the country with a population of 30% under 16 and less than 10% over the age of 65. From the mapping above, we know that the largest BME group are ‘other white’; followed by Asian, mixed race and Black. However, the surgery could not provide the BME monitoring to draw conclusions on this and it would need to be the subject of further research. Reasons for attending this particular surgery All six respondents said that they attended The Avenue surgery because it was the closest to their home. Satisfaction with the surgery Most of the patients interviewed were satisfied with the level of care they received at the surgery. However some patients expressed some dissatisfaction. One of these concerns was with the appointment system, When you try to make an appointment they are over-scheduled (Woman – ethnicity not disclosed) Another felt that there was a lack of joined-up thinking evident, There’s a lack of signposting or working with other teams – they need to collaborate with other services if they can’t help directly (African/American woman) What do you like about living where you do? One woman felt that the area was peaceful,

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I like the peace and quiet (African/American woman) A woman who had moved from London also appreciated the sense of safety she felt in the locality, I moved for a better life for the children, away from street crime (African/Caribbean woman) Others enjoyed the sense of community, ‘Friends and the community’ (Sudanese woman) And a young man also enjoyed being an active member of the community, The leisure centre, I’m involved with the football (African /Caribbean man) Is there anything you do not like about living where you do? One woman recounted her experience of racial abuse in the area, Between 2003 and 2005, after we moved here, we had racial abuse from some teenagers. They finally moved on – the police were helpful (African woman) Whereas another woman felt there was a lack of family facilities locally, It can get boring, especially for the children (African/Caribbean woman)

Mile Oak Medical Centre From discussion with the practice manager, the number of BME patients was seen to be quite low with the key growth rate in Eastern European patients. Regarding ethnic monitoring, questions are asked on the Patient Application form, but many people, including those who are White British, do not wish to complete these. It was also felt that because of changes over a period of time in the coding mechanism and categories for ethnic monitoring, it was hard to gain an accurate figure. The numbers of minority ethnic groups other than Eastern Europeans accessing the surgery was thought to be negligible but it was appreciated that this might mean that minority ethnic groups were choosing not to attend the surgery. Within the capabilities of this research we have been unable to explore the reasons for choices that specific minority ethnic groups make in accessing particular surgeries. This investigation would require further in-depth research. There were seen to be recognized cultural differences in how Eastern Europeans perceived the role of GPs and health care in general, perhaps being used to going straight to the hospital with a health problem and as such it was felt that providing them with clear information about the role of a GP might be useful. It was also felt that more BME patients should be involved in the Patient Participation Group (PPG).

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Several initiatives designed specifically for specific groups of BME patients had taken place, including a talk to staff by the Travellers’ Education Service. Some years ago screening for TB was offered to recently arrived Sub-Saharan patients. These issues could be followed up with further in-depth research. Reasons for attending this particular surgery All the respondents gave the reason for attending Mile Oak surgery as being its proximity to where they lived. Satisfaction with the surgery All those interviewed expressed satisfaction with the surgery and the GPs “Yes, the new doctor is nice, they’re usually cooperative, but today the receptionist was hurrying me. Before they were nice…Most of the patients are white and most of the people who work there and the doctors are white… I have no concerns, I don’t feel I’m treated differently. (Sudanese woman) It is interesting that ‘race’ is noticed in this context but doesn’t necessarily have negative connotations. Further research could be carried out with the Sudanese community and perhaps specifically with the Sudanese Women and Children’s group. It is important to note, however, that a particular of this group made the claim that they have ‘research fatigue’. Several respondents mentioned the efficiency of the appointment system. One patient drew particular attention to the effectiveness of the Health Visitor system, We don’t have health visitors in Poland. My health visitor is brilliant. She really helps me (Polish woman) This is a positive finding that gives a positive message about the health care system that this woman has experienced in Brighton. This woman’s husband is from a different nationality to hers, so that English is their common language and as such the couple have a strong motivation to improve their English. What do you like about living where you do? All the respondents felt that it they lived in a good area with very good facilities, and a ‘nice community’. For young children the ‘play park in the Children’s Centre’ was particularly appreciated. Although one woman was having significant problems of continual verbal abuse from her next door neighbour. She was considering moving out of the area to get away from him. Apart from this, all the respondents, including the woman who had the abusive neighbour were positive about the locality. ‘I like the area, the schools are close and it’s green and beautiful’ (Italian man) Is there any local place you avoid and why? There were no local places that the respondents were likely to avoid.

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Findings: Interviews and focus groups with key BME groups and participants In total 69 people were either interviewed or partook in a focus group in the course of this research. A specific set of questions were used as prompts to facilitate the focus groups (see Appendix 5) The key themes that we were interested in included: • the patients’ identification of a good GP and their experience with the surgery • their assessment of their health and wellbeing generally • their impressions of the local area and facilities within it • Where they access information from We set out to access groups that were close to the surgeries where the research was based. From the mapping, and in one to one discussions with people visiting the surgeries, we identified the following community groups situated close to the surgeries. We carried out focus group discussions with these groups to get an insight into specific health issues experienced by different communities. Given the small numbers of people interviewed from each community, it is difficult to make claims that issues arising are representative of each specific community. Rather the results of the interviews can be seen to raise questions and identify concerns. ESOL Class, Near Mile Oak Surgery We attended the ESOL class at Portslade Aldridge Community Academy (PACA), which is close to Mile Oak surgery to interview the students. (three interviews conducted). We identified that there are some Sudanese families who live near to Mile Oak practice of which only a few were interviewed. In the focus group discussion, key issues for the people interviewed concern an understanding of cultural differences, particularly relating to food and language, as these impact on their health and wellbeing. One Sudanese Muslim woman said GP’s cultural knowledge should include understanding of dietary considerations and cultural attitudes towards exercise. “For example they should understand the eating habits of different cultures as this has a direct relation to health. Also how cultures see exercise. He can encourage me. With women some symptoms are stress-related...The psychology of a person has a big role to play in their health. My GP gave me time to talk about myself. I felt well looked after.” (Sudanese woman from Mile Oak surgery) This quote suggests that there is a need for GPs to ask specific questions about eating habits (it would be unwise to make sweeping generalisations about the diets of specific ethnic groups although it is important to recognise that differences in diet

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016 may have health implications). This report has also indicated that there is a need for awareness about issues to do with a range of other issues that may affect some BME patients including, a lack of links to a wider community, difficulties with communication, isolation, racial harassment or slights and even the British weather are factors that have been identified as increasing stress among some BME patients. For those who had English as an additional language, a doctor who listened well and made time for people to explain themselves, would be more likely give them confidence to express themselves. “Someone who listens… someone you can trust…. Not rushing you (surgery interview)” (PACA) A doctor needs to have good personal knowledge of the patient and good listening skills Yes, the new doctor is nice, they’re usually cooperative, but today the receptionist was hurrying me. Before they were nice…Most of the patients are white and most of the people who work there and the doctors are white… I have no concerns, I don’t feel I’m treated differently. (Sudanese woman) Japanese Women’s Group, near Brunswick Health and Wellbeing Centre We held a focus group with the Japanese Women’s Group who meet at Cornerstone Community Centre, which is close to Brighton Health and Wellbeing Centre (six women attended the focus group). In the discussion, it is clear that key issues for these women which impact on their health and wellbeing are around language and communication. Their experiences of using the surgery are largely positive. However it was identified that not having good knowledge of English and visiting the GP can be a highly stressful process. There are potentially serious issues here of patients leaving the surgery not knowing whether they have been fully understood or whether they have understood what was said. “The GP should try to use simpler language …and talk more slowly... sometimes he is unclear.” (Japanese woman) After leaving the surgery, the women report not being sure whether they have expressed their needs correctly, “We are not satisfied… we do not have enough time in the appointment… we don't know if we have received a proper diagnosis …we are nervous to ask if we haven’t quite understood,’ (Japanese women)

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Moulsecoomb Bangladeshi Women’s Group, near the Avenue Surgery We held a focus group with the Moulsecoomb Bangladeshi Women’s Group, which is in the same neighbourhood as The Avenue Surgery (four women attended the focus group). From the focus group discussion, it is clear that key issues for this community that impact on their health and wellbeing are again particularly around language and communication. Their experience of using the surgery is again largely positive. However not having a good knowledge of English is a key issue for them. The Moulsecoomb Bangladeshi Women’s Group pointed out the time that is needed in the surgery if English is poor, “Sometimes it can take longer to explain but eventually we will understand.” (Bangladeshi Women’s Group) BME Young People Football Sessions, near The Avenue Surgery, Moulsecoomb We carried out focus groups with BME young people that were attending Football sessions at Moulsecoomb Leisure Centre (seven boys in one focus group, four girls in the other focus group) near The Avenue Surgery, Moulsecoomb. These interviews provide an insight into BME young people’s views about BME young people’s wellbeing as well pointing to some specific issues of perceived discrimination. We spoke with 7 boys in the first focus group and 4 girls in the second. The young people we spoke with were aged 10 to 14. The questions were less specific than the others used in the research and we were clear that we had only about 20 minutes for each group, as they had come for their football session. In general the young BME people we spoke to were happy living in the area and had many positive things to say about the available facilities. In particular they spoke very positively about the Moulescoomb Community Leisure Centre and the 67 Youth Club. ‘There’s lots of stuff to do’ ‘We can get into swimming for free with our cards’ ‘Football is free’ ‘kids get cheaper tickets at the Amex’ ‘Its good living close to the beach’ ‘There’s roller-disco once a week’, ‘There’s a bike club and an Arts Club and pool at the 67 Centre.’ The girls’ focus group shared some experiences of discrimination as young people in the Apple Shop in the town centre, where they were not given ay attention and then treated badly when they asked for help. The boys group did not share any negative experiences, but some of the girls also mentioned racist language they had experienced in Primary School. One of the girls also reported an incident when other children called her a ‘foreigner’ because she had recently moved to Brighton from London. Her perspective of Brighton was that it is mainly mono-cultural,

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The feeling that I get is that there are more people in other cultures in London. Here they’re mainly in 1 culture. But in general, there was a sense of community and closeness among the young people in the focus groups and the sense was, in telling us of so many things for them to do locally, that they enjoyed living in Moulsecoomb. We also spoke to two other community groups (identified as two of the Anchor BME groups by SIS and The Trust for Developing Communities). Chinese Elders Group We attended the Chinese Elders Group to carry out a focus group with the group’s Chair acting as interpreter (seven men, nine women were in the focus group). The Chinese Elders’ Group felt that GP’s needed some cultural understanding when giving dietary advice, “The GP doesn’t understand our diet. When they give us dietary advice on what foods to eat, they include cheese.” (Chinese man) Many of the Chinese Elders’ Group accessed interpreters, most of them reported being satisfied with the level of service they received, although a few people raised some issues that they were unhappy about, Twice the interpreter didn’t turn up (Chinese woman) Some interpreters need to use the dictionary, which is not professional. (Chinese man) Some of the Chinese Elders Group used family members to interpret and although they did not go into detail, this arrangement could cause problems, Having the family to interpret can also cause difficulties. (Chinese man) Other participants of the focus group felt that a service encompassing more than simply interpreting was necessary in their communications with GPs, suggesting that an advocate is needed, It’s not only language needs that we have a good interpreter should ensure that our cultural needs are met. (Chinese man) There was no evidence in this research that coming from a different culture, with a different language, having little English or being older caused any barriers when it came to having information about how to stay healthy. The Chinese Elders Group were clear about the importance of a good diet and regular exercise to stay healthy and many attended weekly exercise and yoga classes at BMECP

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Mosaic Under Fives Group We also attended the Mosaic under Fives group that meet in Hollingdean Children’s Centre (interviews with three women) The results from this focus group revealed some concerns about understanding the system when you are new to Britain and the time offered by some GPs but in general the women that we spoke to were very satisfied with the care that they experienced for them and their children.

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Common themes across BME groups

There were a number of issues that were common to all BME communities that are summarised below. As some of these findings are reflections on specific GPs, and details are given which could identify specific patients it was decided to divorce these results from the names of the specific surgeries of the BME patients who were interviewed. What makes a good doctor? People were asked what makes a good doctor. The responses given are generally quite similar and stress the personal qualities that are required. There is a consensus view that a doctor needs to have good personal knowledge of the patient. It is from this first interview extract that the title of this report is drawn, Someone who is aware of my medical history, who will look beyond the symptoms given to identify the root cause of a problem. (Black History Event interview) The main attribute that those spoken to expressed as being important was for a doctor to have good listening skills, One who listen to you… He needs to listen very carefully and know what he’s talking about but not be a ‘know it all’ (surgery interview) For those who had English as an additional language, a doctor who listened well, would be more likely give them confidence to express themselves. Linked to being a good listener and particularly pertinent for people who speak English as an additional language is the doctor’s ability to make time for them to explain themselves. Someone who is not looking at his computer. Someone who listens (Under 5 group) There were differences in what patients were used to in their own countries, in comparison to the UK, Here when you say you have a problem they prescribe straight away, they don’t always look at the symptoms. In Italy the appointments are half an hour. (Italian man) The responses showed how important the qualities of empathy and thoroughness were to BME people as well as the feeling that medication would not be given without a proper diagnosis. I want to have a conversation, ‘Why are you here’ feels cold and rushed. I don’t want to have to explain again and again. I want them to know about me and not feel a stigma of having a mental health problem (African / American woman) The way they talk to me, the way they ask me questions to make me feel very comfortable. The doctor has to make you feel very welcome. It’s important they smile first (Zimbabwean woman)

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The importance of a good reception staff Although many reception staff are perceived as being welcoming and helpful, there is also some cause for concern in BME patients’ perception and experiences that needs to be addressed. Receptionists are key, the first point of communication. They need to be friendly and understanding’ (Sudanese woman from Case Study 3) However, there was also the perception of another participant in a focus group about the receptionist in his surgery that makes him reluctant to even turn up there. People look at me in a funny way in reception if I ask for an interpreter. More friendliness is needed. I avoid visiting the surgery as it can be quite distressing. (Greek man from Case Study 1) Cultural understanding People were asked whether it was important to them for their GP to have some understanding of their culture. The responses varied. Most of those Europeans spoken to, or those with cultures more similar to British, did not see that it was important for GPs to understand their cultures. I think they’re very open to cultural differences. (Black African/White British woman) It doesn’t bother me as you can explain it if necessary (Indian woman) However some of those respondents who perceived that their culture was more obviously different to British culture felt that some cultural understanding from their GP was important, for example the Chinese Elders Group The GP doesn’t understand our diet. When they give us dietary advice on what foods to eat, they include cheese. (Chinese man) It is an interesting observation from this research that those BME patients spoken to tended to prioritize their GPs being approachable, patient and having good listening skills over any cultural knowledge and competence. Seeing the same GP In general, respondents expressed a preference for seeing their own GP. This was particularly the case for those who had newly arrived to Britain and who had little English language. It was important to many of those interviewed that they saw a doctor who had some knowledge of them and their medical history. Usually I see a lady doctor… as I don’t want to see a male doctor… your own GP knows more about you but I also see the other lady doctor. It’s a continuation of care; they both know me. (Zimbabwean woman) Other respondents were less satisfied with having to see different GPs on each visit,

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I always see someone else. It would be good to see the same doctor. (Indian woman) Communication with GP Patients were asked about communication with GPs. Several issues concerning access to interpreters were evident. In particular the Chinese Elders’ Group accessed interpreters, most of whom were satisfied with the level of service they received, although a few people raised some concerns. Twice the interpreter didn’t turn up (Chinese woman) Some interpreters need to use the dictionary, which is not professional. (Chinese man) Some of the Chinese Elders Group used family members to interpret and although they did not go into detail, this arrangement could cause problems. Other participants of the focus group felt that a service encompassing more than simply interpreting was necessary in their communications with GPs, suggesting that an advocate is needed, It’s not only language needs that we have, a good interpreter should ensure that our cultural needs are met. (Chinese man) We interviewed some people (see Case Study 1) who needed an interpreter but who were unaware that such a service was available. The husband was going into his wife’s appointments to interpret for her (which was not always appropriate). Not having good knowledge of English and visiting the GP can be a highly stressful process as made clear in the case studies in this report. There are issues here of patients leaving the surgery not knowing whether they have been fully understood or whether they have understood what was said. The Moulsecoomb Bangladeshi Women’s Group and Japanese Women’s group pointed out the time that is needed in the surgery if English is poor. The GP should try to use simpler language …and talk more slowly... sometimes he is unclear. (Japanese women) After leaving the surgery, the women report not being sure whether they have expressed their needs correctly, We are not satisfied… we do not have enough time in the appointment… we don't know if we have received a proper diagnosis …we are nervous to ask if we haven’t quite understood,’ (Japanese women) Health and Wellbeing The remit of the research was to get as close as possible to BME people’s experience and understanding of wellbeing, as well as health. This involved

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016 exploring whether there were any particular factors especially pertinent to people from BME backgrounds that might influence their experience of wellbeing. The results are striking for two reasons, 1. The BME respondents’ common, overarching psycho-social factors suggest that triggers for stress are universal and that techniques to overcome stress are also commonly shared. 2. There are also particular experiences that the respondents in this research identified that can be seen to be very specific to their positions as being BME. These experiences include suffering racial harassment, even if they are well established in the UK and isolation and homesickness, in particular for newly arrived people and those with little English.

Most respondents reported being fit and healthy and interestingly, this was often also claimed by those who revealed that they had one or more medical conditions. Although we did not specifically ask respondents whether they had a medical condition, several conditions were revealed, one of which is diabetes, a condition that disproportionally affect BME communities. Another medical conditions reported, specific to BME communities is thalassemia (sometimes called Mediterranean anaemia) this is an inherited condition. The respondent with thalassemia reported that many hospital staff are unaware of the condition, although it is prevalent in Greece and Turkey. All of the respondents indicated good knowledge of how to stay fit and healthy and even when they reported that they might not be able to keep fit (often due to pressures of work or childcare responsibilities), they knew what they should be doing and in many cases expressed an intention to exercise more. Many respondents indicated that they ate a healthy diet, took vitamins and reported on how they kept fit, Light exercise, housework, dance work outs, attending the gym, walking, running, running with a bespoke running buggy, hiking, cycling. (These are the activities undertaken by the three women interviewed in the Under 5’s group total activities) There was no evidence in this research that coming from a different culture, with a different language, having little English or being older caused any barriers when it came to having information about how to stay healthy.. What makes you feel happy? The responses here reveal a human commonality in the factors that made people happy. The focus was on love of family, belonging, companionship and spiritual contentment. The responses emphasize close family relationships in particular as making those interviewed happy, ‘My daughter’, ‘my babies’ ‘my son’ ‘when my baby’s happy’, ‘good relationship with my husband’ (some of the general responses). One mother of two under 5’s said that ‘sleeping and relaxing in a bath’ made her happy.

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Other people referred to friends and socializing as making them happy, ‘gatherings’, ‘close friends’, ‘going out and socializing’, ‘to be with people I like’ (some of the general responses). And a few mentioned other factors, ‘spiritual happiness’, ‘productivity and creativity’. What causes you stress? Stress was caused by things going wrong, for example, ‘son having behavioural issues at school’ ‘health issues’ ‘money worries’ and issues to do with having young children, ‘family life’, ‘when the children are unhappy’, ‘lack of sleep’ but stress was also reported as initiating from factors directly related to the respondents’ position of being from BME communities, ‘racism’, ‘an unsupportive community’, ‘missing family’, ‘homesickness’, ‘being unfamiliar with the system, particularly when our child is unwell’ (some of the general responses). What do you do when you feel stressed? The responses to stress and the factors used to alleviate stress are familiar, but again, attention needs to be drawn to the vital role of support groups, particularly to people who may be isolated and living away from their former homelands. Reactions to feeling stress include those that may appear negative, ‘I get angry’, ‘I scream, ‘‘start eating too much’ and ‘shout at children’. Others respondents identified a more positive response, ‘ relax’, ‘listen to music’, ‘pray’, ‘go for a run’ ‘walk in the fresh air’, ‘read the bible, sport’, ‘go to sleep’, ‘yoga, pray, eat’. Some respondents in focus groups, spoke of the importance of their particular BME group in alleviating stress, ‘attend the support group for a chat’ It was striking that a respondent (see Case Study 1) recognized his extreme isolation in living in Britain, away from any of his former support systems, ‘Unfortunately I have no relief (for my stress) we haven’t made any friends yet…’ Facilities for children Respondents at Mile Oak surgery and BHWC generally expressed satisfaction with local facilities for children, although a respondent from BHWC suggested that she did not feel that she had full access to local information regarding what was available, I’d like to know more, to have access to information about local facilities (African woman) There was some concern expressed by respondents at The Avenue surgery for the lack of local facilities. All the respondents below were from The Avenue surgery, More activities and youth clubs, and groups for special needs (African /American woman) There aren’t a lot of play parks for little children (woman, ethnicity not disclosed)

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I would like to see more events and activities for the younger ones; I have to travel to get my child to drama (Caribbean woman) I have a baby and a toddler ... and the toddler isn’t allowed in the baby group. I would like to find a group that would cater for both children at the same time. (Indian woman) Support Groups People were asked if they would attend a support group to understand if there was a perceived need for support groups for BME patients to combat isolation. Several said they would welcome BME support groups, with a particular focus on  Wellbeing  Family support  People with diabetes

Advice about matters of health and social care The most common source for advice was the internet. This was followed by GPs and other sources such as their child’s school, Health Visitors, Citizen’s Advice Bureau and Children’s Centres. Only two respondents said that they would initially turn to their friends, of these, one respondent (a Japanese woman) said that she would turn to her friends as she would be hesitant to ask her GP as ‘he would be too busy’.

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Case Studies

Case studies are used here to provide a closer idea of the reality of some of the experiences of BME respondents who we spoke to at the surgeries and to give a more holistic picture of their circumstances and concerns. Providing case studies is in keeping with the remit of this report to give an ethnographic account of the experiences of BME patients, which implies getting a closer, more nuanced picture of their circumstances Three case studies are included in this report, one for each surgery, although for the sake of confidentiality the case studies are not attributed to the surgeries that they came from. (Participants’ names have been changed to ensure anonymity)

Case study 1 A Greek couple (Christos and Alexandra) with a son of two and a half years old Alexandra(Dimitris) has have a health been livingcondition in Brighton and is stillfor takingthree months. medication Alexandra prescribed was from in her Greeceearly. 30sAs sheand has Christos to rely was on herin his husband early 40s. to interpret Before thisshe theyis anxious had spent about a yeararranging in andLondon attending after an moving appointment to the UKon herfrom own. Greece, Until where our intervention they had lived the coupleall their were lives. unawareAlexandra of the had exis littletence English. of an Theyinterpreting both worked service and in surgeries. Christos in particular worked long hours, looking after Dimitris when he was not working, so that his wife could Withgo English out to work. as a secondThis couple language had numerous the couple concerns felt anxious related when to theytheir didfamily’s not see health the sameand GP wellbeing at each and surgery were visit, happy because to have it themeant opportunity explaining to discusstheir concerns these. over again and running the risk of being misunderstood. They reported feeling isolated in the flat where they lived, making comparisons Onwith making the friendlinessenquiries about of the what small immunizations town neighbourhood Dimitris stillwhere needed they hadafter lived having in begunGreece the vaccinationand the coldness process they in experiencedGreece, the parentsin the UK. were In askedspeaking to interpret about his their Greekneighbourhood medical records in Brighton, themselves Christos so the suggested, GP could assess which ones were still needed. Christos was unhappy about being given this responsibility. It’s very different to Greece where twice a week we used to drink coffee with Theyneighbours; were also we concerned would speak about about their whatson’s personal speech developmentproblems we andhad. did not feel listened to or understood when they tried to raise their concerns about this with their GPAs and a coupleno information they had had been been impressed given to with them the about level possible of health sources care that of theysupport. had Throughreceived our in support London we and were Christos able to had give been them given information ‘a full medical about theirexamination’. nearest In Children’sspeaking Centre about whotheir would wellbeing be able they to both connect reported them feeling with a stressed. Health Visitor Christos (a service said, that they had been unaware of) as well as giving information about additional services for Unfortunatelychildren available I have locally. no release (for my stress), we haven’t made friends yet so we can only talk with each other. This study emphasizes how important it is that newly arrived migrants have support in accessingThere are services aspects and of areBrighton treated-life in that a friendly they do manner like, for in example, the process. living The by the sea, readinessthe Laines with and which the thisquietness couple of were Brighton willing as to compared be interviewed to London. by the Their researchers feeling of andalienation the keenness, however, of Christos seems to to attend determine the focus Christos’ group experience testifies to in their the UK,need affecting for support.his relationship We were tofortunate the surgery in that and one his of attempts the researchers to communicate, was willing to find the information that they urgently needed to be able to offer support to them in making firstI don’tcontact feel with comfortable the appropriate trying toservices. explain things. There are difficulties with the language. People look at me in a funny way in reception, more friendliness is needed. I avoid visiting the surgery as it can be quite distressing. Of course there’s a language barrier but I don’t feel that some of the receptionists try to understand. My experience depends very much on who’s there.

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Case Study 2 This case study concerns a man in his late 30s from Italy, (Matteo) who is married to a Polish woman in her late 20s (Agnieska). They have two small children aged six months and two years. They met in Brighton and soon got married and started a family. They are now living in occupation that they are not happy with. The flat is cold and there are several flights of stairs to climb to get to it. Matteo works very long hours and they are planning to move to a better flat, further out of Brighton in the near future.

Agnieska is very happy with the surgery. Although her English is not fluent, she is confident in expressing herself. As the children were both born in Brighton, she feels that she has had good access to services and her Health Visitor in particular has been very supportive and has helped her to access a Toddler Group. Both feel that the area in which they lives is safe and in particular she enjoys taking the children to the local park and Children’s Centre.

I like the area, it’s green and beautiful, the park is lovely and all the facilities are close.

Agnieska does experience stress at times, in daily looking after two small children, but the children are also the focus and the joy of their lives. She misses the support that she would have had at home in Poland. She visits the surgery regularly with her children and is very pleased with the standard of care and the ease of getting an appointment.

Matteo works long hours and suffers intense tiredness. His experience of stress is related to working so hard but he relieves his stress by sleeping when he can. The family in this case are settling into Brighton well. Because the couple come from different countries, English is their common language and Brighton is place where they met and came together to start a family. As such, they express a positive outlook on Brighton and have been please to make use of the services and facilities.

We don’t have Health Visitors in Poland. My Health Visitor is brilliant, she has really helped me.

They have made some friends through the toddler group they attend and the family makes good use of the recreational facilities available in Brighton. The sense is that despite the busy-ness of both of their lives they have a feeling of positivity and wellbeing and despite some problems with their accommodation and of missing their extended families, they are intending to move somewhere better and continue to improve their lives.

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Case Study 3 The experiences of an Arabic woman (Faisa) who is in her early 40s makes up the third case study. Faisa has lived in Brighton for 16 years, she is married with four children although her husband often works away. Before moving to Brighton she lived in the Sudan. Although her first reaction to being asked about the surgery is to state her satisfaction, on further analysis, she reveals how difficult it can be to communicate in English regarding her health, particularly when she feels under stress. Faisa speaks about this experience of trying to tell the GP how she feels:

It’s hard to describe the pain if English isn’t your language. It can be very frustrating and you feel worried about your diagnosis. You try to pick up relevant words.

Her family has had difficult experiences in Brighton, namely concerted and ongoing episodes of racial harassment. She has seen neighbours deliberately throwing plastic bags of dog mess into her garden. She regularly has racist abuse shouted at her children and herself. Neighbouring children have vandalised her car and while the family was away, there was an attempted break in, intercepted by a supportive next door neighbour. Racial discrimination therefore features prominently in Faisa’s everyday experience.

The second day after we moved in here, children threw things through the car window. My children are not safe to go out.

Faisa is concerned about her children’s safety in their own neighbourhood to the extent that she takes them to a completely different area to play in order to feel confident of their safety. She does not feel safe in the area and would like to see CCTV cameras fitted.

I need to take my children to Hove Lagoon to feel safe.

Faisa is concerned about her children who have experienced this aggression towards them and who have ongoing issues of being bullied at school. Her experience is of feeling unsupported by the school. In relation to this problem, Faisa’s objective is to encourage her children to speak out against unfair treatment and her impulse is to be in the school to protect them,

I feel like taking on voluntary work at the school so that I can keep an eye on things.

Unsurprisingly, Faisa’s experience is one of feeling that she does not fit into the area and of not feeling safe. For this reason of not wanting to increase her marginalization she decides at present against wearing a hijab, although for religious reasons she would actually prefer to do so.

Faisa’s experience of not being understood and being sent to wrong departments gives evidence to her struggle for better communication. Here the failure to establish good lines of communication leads her to panic and to an experience akin to being struck dumb.

It was very difficult to get the right referral for a hip problem. I was sent to ‘gynae’ at first, but the problem is in my spine. Good communication is vital, the doctor needs to be patient and make eye contact for me to feel relaxed. (Dr ***** is very good). Sometimes you see the impatience in their face and their body language. When I feel this, I find that I can’t talk and I need to reschedule and make another appointment

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A trained pharmacist, Faisa decided to undertake further study to work towards an MA, Faisa again evidences her experience of discrimination,

I also experienced unfair treatment as a student from my supervisor.

She felt unsupported and marginalized by her tutor and managed to transfer to another tutor who proved to be extremely supportive. Faisa’s conclusion, on the basis of these experiences is:

You can feel whether people like to communicate with foreigners.

Faisa has studied the effect of Female Genital Mutilation (FGM) on women who have experienced it and wanted to point out how importance it was for doctors to be able to recognize FGM and to deal with it effectively and to be updated with the legal aspects of this issue. She also spoke to us about some of the terrible physical and psychological implications for women of having undergone FGM:

FGM has a psychological impact. Doctors need to be trained. The law around this has recently changed in the UK.

As the mother to four children, Faisa makes regular visits to her surgery. She expresses strong views on the role of the receptionists in referring patients to see the GP. She relates her experience in which she called the receptionist in an attempt to make an appointment with her GP when her son hurt his arm.

Receptionists are key; the first point of communication. My son fell and hurt his arm. I called the receptionist and she advised me to take him to the hospital, but I would have preferred to go to the GP. I got shouted at by the hospital receptionist. I didn’t want to argue but I felt so upset and wish I had been able to see my GP.

The painful impact of this episode of firstly being unable to make an appointment for her son to see the GP and secondly, being admonished by the hospital receptionist needs to be seen in the context of Faisa’s overall experience in Brighton in which she and her family have been repeatedly diminished and subjected to abuse and bullying over years. In this context, rude treatment by a hospital receptionist diminishes Faisa’s self-confidence and leaves her feeling completely dejected.

The Trust for Developing Communities – LOOKING BEYOND THE SYMPTOMS March 2016

Analysis

This was a small-scale research carried out in three surgeries in Brighton and Hove to ascertain the experiences of BME patients in terms of their health and wellbeing. The research methods included carrying out interviews and focus groups with BME patients in those surgeries and also carrying out interviews and focus groups with local BME support groups. There are case studies in this report relating to patients in each of the three surgeries to give a wider and more holistic perspective to the context of their health and wellbeing. Despite the small scale nature of this research, some interesting findings have been made, in particular, as the research was carried out in the waiting rooms, cohorts of people have been spoken to who may not be members of BME support groups and forums and who may therefore represent some experiences of more marginalized BME individuals.

The vital nature of BME support groups became evident in this research. They are seen to provide an opportunity for interaction, mutual support and companionship that many BME individuals may find difficult to access elsewhere. This is particularly evident where they have the opportunity to express themselves in their home language.

The fact that it is difficult for BME patients to access information if English if their second language, makes their views and concerns under-represented in much research, even that about BME needs. The isolation that this research has uncovered shows that in some cases, they are not getting access to basic services and communication difficulties may cause them and their children to be, in effect, denied basic services.

Some communication difficulties arose from BME patients not being able to access relevant help and support in the surgeries and although many reported high degrees of satisfaction, others reported communication problems with the receptionists and their GP’s and of feeling that they were not always patient with them. As such, this research clearly reveals that the approach, friendliness and above all the listening skills of GPs and receptionists often determine BME patients’ experiences and levels of satisfaction with the surgeries. It must be stressed that for some BME patients, an unhappy experience of visiting the surgery adds to an already marginalized and stressful experience of life in the UK.

Some of the BME patients spoken to in the course of the research stressed how they are isolated from their support networks of family and friends. Issues such as homesickness, not being able to communicate and a lack of support to share family responsibilities have been reported as affecting their wellbeing. In addition there were several reports of racial harassment, which obviously increases stress levels and adversely affected some BME patient’s sense of belonging in the communities in which they live.

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Interestingly, many of the respondents that we spoke with were less concerned that GPs understood their cultural needs and more concerned that they were friendly, patient and interested in them and their health needs. In particular there was some concern that they were not given enough time with their GP to allow a proper diagnosis (in the cases where the patients had poor English).

It is important to stress that the research also evidences excellent practice in which BME patients experience GPs and receptionists, to be warm, professional and accommodating and many respondents had nothing but praise for the service they received.

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Recommendations

Training and information Ensure that information about children’s centres and related services for children are made available at reception and that translated leaflets about local services are available in the waiting rooms.

Training needs to be provided with GP receptionists, particularly in how to work with patients with little English, to ensure that they are welcoming to these patients and signpost support and further information where appropriate.

Training needs to carried out for reception staff on the implications of BME people not feeling confident to communicate in English. This report stresses the importance of kindness and empathy in front line service providers and the impact of this on health and wellbeing.

Clear information about the role of a GP and what kind of service a GP offers, would be extremely useful for patients newly arrived in the UK.

Awareness of language needs Information about the Interpreting Services should be available in every language at the surgery and receptionists need to be briefed to make patients aware of this service.

If a patient has poor English, more time is needed to with appointments to ensure effective communication

The PPG member who attended a Focus Group at The Avenue surgery, suggested that an app should be developed that could contain translations in international languages to help communicate various aches and pains.

Consistency of always seeing the same GP may be of more importance to some BME patients for whom language and communication is a barrier.

Awareness of cultural needs Dietary advice, particularly that given to older patients, needs to take into account very different diets that may be culturally specific.

Training needed in GPs surgeries about FGM and some of the many issues that arise from it.

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Ethnic Monitoring and Outreach Ethnic monitoring needs to take place to relate directly to services and support offered to BME patients (i.e. the information gained by ethnic monitoring needs to be made use of).

Outreach work should be initiated for more BME patients to be involved in the PPGs.

Outreach work to take place, in partnership with surgeries and community development workers to establish support groups for isolated and newly arrived BME patients.

Surgeries should be aware of racial harassment experienced by patients and work in close and urgent partnership with other service providers to alleviate this.

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Conclusion

The research has exposed marginalization of some patients in the surgeries. In particular new arrivals to the UK may have no community support or knowledge of ‘how the system works’ or what services are available to them. The research has also revealed that some of those BME residents in the city who may not have much English and who may have health problems, may receive considerable support by virtue of being involved in culturally specific communities (eg Chinese Elders, Japanese Women, Moulescoomb Bangladeshi Women’s Group). The case studies presented in this report, provide an insight into the wider experiences people face across BME groups, giving details of the life story of some of the respondents and pointing to various factors that adversely affect their wellbeing. It is this “anecdotal nature” of research that is at the heart of ethnographic research methods, and gives a story or paints a picture of someone’s experience from which wider inferences may be drawn. The factors affecting people’s wellbeing in the research include • Profound isolation and marginalization • Persistent racial harassment • The wider cultural and social influences of children’s schooling, difficult experiences in higher education • A lack of knowledge about which services are available or what rights they might have. Although it may be the case that different communities may have slightly different needs, which research limitations have not allowed us to fully investigate, the wider themes and findings of this research investigation are critical ones that need to be recognised and addressed.

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Appendix 1 Leaflets to inform BME patients about the research (translated into Cantonese, Farsi, Bengali and Arabic)

Health & Well Being BME needs assessment

 Do you identify as being Black or Minority Ethnic (BME)?

 What is your experience of health and wellbeing?

 We would like to hear your voice

We are carrying out research into the Health & WellBeing needs of BME people

Would you be prepared to meet and talk in confidence about your experiences?

Your name will not be used in the research report but the experiences that we hear about will be used as part of this BME Needs Assessment to improve services and opportunities for those in marginalized communities.

To participate please contact: Dr Yaa Asare: [email protected] Tel: 07475 517 979

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Appendix 2 Questionnaire for Practice Managers Background to research

1. What are your own impressions of the numbers or percentage of BME patients in your surgery?

2. Do you carry out ethnic monitoring?

3. Why or why not?

4. What do you think are proportions of groups from various ethnicity that use your surgery?

 Bangladeshi  Arabic  Black African – any particular country  North Africa  Pakistani  Eastern European  Any other

5. Do you think that BME patients have any particular health needs?

6. What might these be?

7. Do you monitor the particular health needs of BME patients?

8. Do you think that there are any issues around wellbeing that particularly effect BME patients?

9. Would we be able to put posters (A5) in your waiting room, or ask receptionists to distribute leaflets to patients?

10. Would it be convenient for us to have a desk at your surgery on 1 or 2 surgeries a week for about 3 weeks?

11. Do you have the space for us to conduct a focus group in February?

12. Are there any other ways that you could help us access BME patients?

Thank you for your time

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Appendix 3 Pie chart to show the ethnicities of 20 BME patients interviewed in the surgeries

African Not given Polish Indian Turkish African American African Caribbean Greek Mexican Asian

Pie chart to show the ages of the respondents interviewed in the surgeries

Under 20 20 - 25 26 - 35 36 - 45 46 - 55 56 - 65 Over 65

Graph to show the numbers of women and men interviewed in the surgeries

16 14 12 10 8 6 4 2 0 Women Men

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Appendix 4 Interview sheet for BME participants - Researchers to begin by explaining the remit of the research, stressing confidentiality for participants and explaining why names and phone numbers are being asked for (focus group contacts). - Please encourage an extensive, wide ranging conversation. Take your time and not key words and phrases which can be used in the final report.

Questionnaire for participants of research – assessing BME health care needs in 3 specific surgeries General Details: Name: Ethnicity: Gender: Phone number:

What is the language that you usually speak?

Which age bracket do you fit into? Under 20 20 to 25 26 to 35 36 to 45 46 to 55 56 to 65 over 65

How long have you lived in Brighton?

Where did you live before?

Have you migrated from another country? If so, how long ago? Where from?

Your surgery

Which surgery do you attend?

What is your reason for attending this surgery?

Are you satisfied with this surgery?

Do you feel that the surgery meets all your health care needs?

How often do you visit your GP?

What are you looking for in a GP? (How would you define a good GP?)

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Is it important for you that your GP has some understanding of your culture?

If yes, please comment further

What is the likelihood of seeing your own GP when you make an appointment?

Is it important for you to see your own GP? If so, why or if not, why not?

Do you need help in explaining things to your GP?

Do you always understand what your GP tells you?

If you need it, do you have access to an interpreter in accessing your GP?

Your health and wellbeing in your locality In general how would you say your health is?

Do you feel you have enough information about looking after your own health?

Would you say that you are fit and healthy?

Do you do anything in particular to keep fit and healthy?

Would you like to do anything to keep you fit and healthy that you are not able to do?

What makes you feel happy?

What causes you to feel stressed?

What do you do when you feel stressed?

What do you like about living where you do?

Is there anything you do not like about living where you do?

What is your favourite local place to go to and why?

Is there any local place that you avoid and why?

Your caring responsibilities and focus group participation

Do you have children or carer’s responsibilities?

If you have children? What are the local facilities like for children?

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What additional facilities would you like to see for children locally?

If you are a carer, do you receive any help or respite care?

Would you access help if it were available?

What would you want such help to look like?

Where do you go to get advice about matters of health and social care?

Would you be willing to attend a small focus group with lunch (as a thank you) in February to discuss these matters further?

The Avenue surgery, Wednesday 3rd February, 12.00 – 1.30

BHWC at Wavertree House (TDC meeting room) Somerhill Road, Thursday 4th February, 12.00 – 1.30

Mile Oak Medical Centre, Friday 5th January, 12.00 – 1.30

Thank you for your time and attention

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Appendix 5 Focus Group Questions

 Thank you for turning up  Stress personal confidentiality  We will be taking notes  Encourage open discussion – stress discussion needs to relate to health and wellbeing, the surgery, the locality or experiences of ethnicity

What is the surgery doing well for you as a patient?

Prompt: specifically for BME patients

How could the surgery improve the services for BME patients?

Prompts: information: language: support groups

What is it like living in this area?

Prompt: What is good, what is not so good?

Does this area have a community spirit?

Prompt: Are you on friendly terms with many people? Are you friends with people from different ethnicities?

Have you or your family ever experienced racism in this area/ in Brighton?

Prompt: How comfortable do you feel here?

Do you have issues around housing that affect your wellbeing or health?

Do you have issues around work that affect your wellbeing or health?

Do you have any issues around education that affect your wellbeing or health?

Can you each think of 1 issue around your health and wellbeing, especially as a BME person that you would like to especially express?

Thank you for your time and attention

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Appendix 6 Young People’s Football Club Focus Group Questions

We are carrying out research of BME people’s experiences in three surgeries in Brighton and Hove but wanted to get some wider ideas about how different groups in the City experience life.

We’re interested not only in health but also in wellbeing. Please talk freely, your names won’t be used

(Warm up) What’s good about this football club?

Do you have any experiences of discrimination as young people in any parts of your life e.g. shops, buses, schools? (ask for stories)

What is good about being a young person living here?

Have any of you had any experiences of racial discrimination living here?

For further information please contact TDC on the address or number below or email: [email protected]

The Trust for Developing Communities, Wavertree House, Somerhill Road, Hove BN3 1RN 01273 262220 A Company Limited by Guarantee registration number

3939332 and Registered Charity number 1106623