Ipswich and Suffolk Council for Racial Equality. Experience of health care services in Suffolk: Black and Minority Ethnic (BME) residents speak out

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2 Ipswich and Suffolk Council for Racial Equality Experience of health care services in Suffolk: Black and Minority Ethnic (BME) residents speak out Sandy Phagura, Researcher August 2007

3 Contents 1. Background Page 3 2. Methodology Page 4 3. Reference to other reports Page Statistics Page Findings from research Page Recommendations Page List of contacts Page Appendices Page 16 Appendix 1 Page Appendix 2 Page

4 1. BACKGROUND A small piece of preliminary research was commissioned by ISCRE 1 in August concerning the experiences of BME 2 people when accessing health care services in Suffolk. From anecdotes staff and trustees of ISCRE had become concerned that there were barriers to access to health services by some BME communities, or some cases even no provision made for, due to a number of factors. An important piece of legislation that must be borne in mind in relation to this research piece is the Race Relations (Amendment) Act The Act requires named public authorities, including Health authorities, health boards, NHS Trusts and primary care trusts, to review their policies and procedures; to remove discrimination and the possibility of discrimination; and to actively promote race equality. It strengthens the previous act 3 (which makes it unlawful to discriminate against anyone on grounds of race, colour, nationality or ethnic or national origin) by including the condition that public authorities are required not only to address unlawful discrimination where it occurs, but also to be proactive in preventing it from occurring. This, therefore, includes making provision for all to access services. This short piece of research has highlighted a number of issues that hinders some BME communities being able to access health services in Ipswich and Suffolk, as well as - potentially - health authorities not carrying out their legal duties. It is only a starting point. Clearly, the sample of interviewees is small and therefore its use is to prompt debate rather than to claim any statistical significance. Nevertheless, I believe that providers of Health Care services should review the outcomes from this piece of work and then commit to undertake further work in this critical area in partnership with ISCRE to identify further and address inequalities in health care provision across Suffolk. Jane Basham Director 1 Ipswich and Suffolk Council for Racial Equality 2 Black and Minority Ethnic 3 Race Relations Act

5 2. METHODOLOGY The research was carried out during August 2007 using details of various BME community groups in Suffolk, which were supplied by ISCRE. Appointments were made to visit the various places 4 and BME people who visited those places were used to complete the questionnaires. The research methods took two forms. The first was to use a questionnaire 5 that the respondent filled in themselves or with the use of an interpreter asking the questions as written on the questionnaires and filling in the answers in English. The second questionnaire 6 was used as an individual data-collecting sampler, in which the questions were more open-ended and thus provoked answers from the respondent that allowed them to fill in the answers in more detail. For the findings, an equal amount of both types of questionnaires were used. Most of our interviewees were based in Ipswich, where all of our research took place. This was largely driven by the support offered to us by health care providers, and the limited amount of time we were able to dedicate to the research. We did try and include other areas of Suffolk to reach BME people to complete our questionnaires, with the PCTs 7 and trusts such as West Suffolk Hospital and Norfolk and Waveney Hospitals, but there was less support from those areas. Because of the limitations of the time scales of the research not all BME groups are represented. In some cases those interviewed did not want the provider of services identified and their wishes have been respected. Due to constraints of time, and recognition that the sample size is small, the report does not see to draw out any statistical conclusions. Should someone wish to take on or fund the project further, the completed questionnaires are available for further use. There is also no information about the ethnic makeup of the County. This is because there is an acknowledged lack of good quality up to date information regarding this 4 List of contacts on page 16 of the report 5 See Appendix 1 6 See Appendix 2 7 Primary Care Trusts 4

6 3. REFERENCE TO OTHER REPORTS Prior to the questionnaires being constructed and the research being carried out, the use of other reports that relate to BME communities and health provision, which had been carried out elsewhere in the UK, were used for initial analysis. Research shows that ethnic minority groups generally have poorer health and lack access to some form of health provision 8. Furthermore, the Department of Health s own patient surveys also reveal a consistent pattern of higher levels of dissatisfaction with NHS services amongst some minority ethnic groups, when compared with the White British majority 9. Below are some more of the findings of further reports. Translation is a considerable problem for users of health services, as some BME people are unable to speak English (or properly enough) for the service to be able to provide them with the appropriate level of care 10. The lack of understanding of various cultural issues by healthcare professionals is also something that was discovered. This impedes the appropriate level of help given to the user. An example of this was highlighted in a research task involving Muslim women using health services, relating to the issue of mixed wards 11. All women felt that mixed wards were not appropriate, as they did not provide privacy; and the majority of women remained enclosed in their cubicles for the whole period of their hospitalisation. Although some women asked for a single sex ward, the majority were not aware whom they should ask. Interestingly, it was also mentioned that cultural differences between GPs and patients who speak the same language can also compromise the quality of consultations; as sometimes assumptions can be made CRE website findings 9 Unpacking the patient s perspective: variations in NHS patient experience in England. Commission for Health Improvement (2004) 10 Black and Minority Ethnic Health Service Provision in Liverpool Primary Care Trusts Liverpool John Moores University (August 2001) 11 Kensington, Chelsea & Westminster PCT BME Health Forum: Task Group on experiences of Muslim women using health services (2002) 12 Black and Minority Ethnic Health Service Provision in Liverpool Primary Care Trusts Liverpool John Moores University (August 2001) 5

7 Children are acting as interpreters on behalf of their parents, their siblings and in relation to their own health. However, considerable uncertainty exists among GPs and among the children's parents concerning the acceptability and effectiveness of children acting as interpreters. For example, there are concerns about the risk of misdiagnosis or that the information may not be relayed to the person who is being interpreted for. There was found to be a lack of access to health information or awareness of the services available. This was particularly true of rates of illnesses that are particularly high for BME groups. Furthermore, materials that are produced only in English may not be able to be understood by those who cannot read or understand it; i.e. those about screening or giving blood. 6

8 4. STATISTICS In total, 30 people acted as respondents for this piece of research. Below is a breakdown of the percentages of people interviewed of different ethnic backgrounds, and the numbers of people within each ethnic category 13 : 20% 0% 10% 34% 23% 13% White Mixed Asian Black Chinese Other WHITE WHITE English British Other English British Other MIXED White/Black Caribbean White/Black African White/Asian Other BLACK Caribbean African Other 13 The Other ethnic background category is not shown as a pie chart as this category comprises of Kurdish people that were spoken to, which is a total of 6. 7

9 Below are also the percentages for gender and age of those people who filled in the questionnaires and who were spoken to: GENDER AGE 3% 7% 3% % 57% Male Female 13% 47% % Older 8

10 5. FINDINGS 1. Interpretation and Translation It was found that some patients lack of spoken English caused many problems for them, which presented a barrier to accessing the necessary healthcare. The following are comments from those interviewed: a) Lack of English stopped some BME people from even beginning to access services, so some people said they were not even registered. Others commented that when they had began to register there were so many problems their lack of English limited the process to be completed. b) The help patients were given was not considered enough or the diagnosis was incorrect, in their opinion, because the healthcare professional did not understand them sufficiently to diagnose them correctly and thus give them the correct medication. c) Language Line is known to be used but by very few healthcare professionals. Even when it is, it can still cause problems as they are not always understood by the patient for reasons like the dialect being different. d) When some BME people have wanted to make complaints, they have not been able to pursue them to their own satisfaction, for example, because of the language barriers and little help was provided to them in their own language. e) Informal interpreters within families are often used: however this is not always a viable solution. One woman spoken to at the Bangladeshi Support Centre said that her daughters act as interpreters for her but they do not understand Bengali enough to translate it back to her. Furthermore, because she is reliant upon others within her family to interpret for her, she is not always able to see her GP or go to the hospital because they always have their own life and work. Therefore she finds herself waiting for someone to take her and this impacts negatively on her mental health, making her feel depressed. One woman (Bangladeshi) was spoken to briefly at Ipswich Hospital and was asked if she was there for an appointment. Although her English was very limited, she said her daughter was actually here for an appointment. She was then asked who acted as an interpreter for her when she came in for an appointment for herself and she said it was usually her son (he was presumed as being young, as she made a sign that he was short). She was asked her if she had ever 9

11 been provided with an interpreter at the hospital and she said no. On a more positive note, it was noticed that the hospital had lots of their leaflets in different languages, showing a positive step towards BME patients accessing other healthcare services which they may not have necessarily known about. Another person who was spoken to at the Hospital had been told by healthcare services to bring an English speaker with them because having a translator was too expensive to provide. Someone who worked in a hospital as a hostess on a ward spoke about how difficult it must be for someone who cannot speak English. She once witnessed some nurses asking a patient what he wanted to eat. Due to the fact that he could not speak English and explain what he wanted to eat, they said give him cheeses and biscuits or whatever. As a result, from then on, the patient always said that he wanted cheese and biscuits to eat; as that was the only word in English he had learnt, from hearing the nurses speak it, to describe food. The support officer also said that she has requested interpreters for clients at Ipswich Hospital and been refused as policy has changed and interpreters can only be used in life or death situations. She added that as part of her role she has come across Bangladeshi people who have told her that they have not been able to explain their symptoms properly because of their language barriers and main problems have remained while surface problems have been dealt with. As she understands it from clients, not all GP s provide Language Line as many doctors are not comfortable using the service. She believes that Budget issues should not mean taking away basic human rights that of the client s voice because of language barriers. Where family members have been used as interpreters for the patient, they have not been reliable. For example, the support worker at the Bangladeshi Support Centre interpreted for a female who desperately wanted to tell what her experiences have been like. She has been treated by the Mental Health Outreach Team (who she said were very helpful and supportive and visited her regularly, as well as Suffolk Carers who have been excellent), but when she went to the hospital, her husband had interpreted for her despite him having his own mental health problems. Furthermore, she found out that he did not explain to her what the doctors were saying about her condition and therefore did not even understand what was going on with her own health. She 10

12 added that although she needs to speak with them again, she has not been in touch with them because she has no one to interpret for her. 2. Repetition In some cases of patients for whom English is a difficulty, when registering with a GP s surgery or a dentist, healthcare users completed the same paperwork again. This is because they did not have the ability to explain that they have already completed the necessary forms once or even twice before. 3. Time taken to get an appointment Some people who were spoken to were very disgruntled at the fact that it took them so long to get an appointment with their GP, hospitals and dentists. One person, who was spoken to, made the point that this might be due to what he believed was a culture of going to the doctors, in this country, for little, little problems. This resulted in the doctor always being busy and healthcare services being used so readily, thus not being able to make an appointment quickly enough. In Sudan, you don t go to the doctor unless it is urgent, and when you do go, they know you need to be seen straight away. This means that, culturally, some BME patients only attended when they had become more seriously ill, and this must be considered when planning access. Furthermore, there is a perception that waiting time in health care services is far too long in particular, hospitals. Further, some people spoken to believed that they were waiting longer because they were a minority group. One person said that during a visit to the hospital, he was asked where he was from, his ethnic group, occupation etc when he arrived. He said that he was made to wait for a very long time and believed that people he identified as white were seen quicker. He even said there at other times, there were separate queues but the nature of the queue was not made clear. He felt he was treated differently because he is Kurdish. This perception needs to be addressed. 4. Lack of understanding by healthcare professional of some BME people cultures Some of the interviewees suggested that healthcare professionals need to have more regard for the cultures of BME people. For example, one Indian woman spoken to said that there were no female GP s in her surgery and that she would feel more comfortable 11

13 discussing personal medical problems with a female GP. Knowing of the lack of female GP s there had led to her refraining from making an appointment. One person said that the Asian doctor is much better than his white counterpart because he has an understanding of the culture of the patient and as a result, can communicate better. 5. Discrimination on the grounds of nationality An Indian woman, who was spoken to, firmly believed that the hospital did not take any interest in her infertility treatment because they were not British citizens; rather here to work. The doctor asked her how long they (husband and wife) were here for, and she even mentioned that they would be extending their stay because of work purposes. She said that, firstly, she was referred to the hospital for an appointment, which took a very long time to obtain. Secondly, the doctor did not seem that interested in helping her because she perceived he was under the presumption that they would go back to their country of origin anyway, so would not need treatment. Other issues A support officer at the Bangladeshi Support Centre also spoke about circumcision and the way in which it was performed in hospital. Firstly, she said it had to be paid for privately and was not available on the NHS, even though it was something that was a requirement of the Muslim faith. Secondly, she stated that when it was performed privately, after parents had paid for the procedure, it was not performed under general anaesthetic. She spoke about the mental trauma that boys must suffer when they know they will be awake through the whole procedure. When she took her son to hospital, she could hear the screams of fear from the other boys, as well as her own son. Some interviewees spoken to say that there was a definite lack of care and services in hospitals and healthcare professionals. A Turkish couple spoken to, with the help of an interpreter, felt they had suffered hugely at the hands of healthcare professionals when the woman miscarried her baby. She explained she was then in so much physical and psychological pain, but nothing was done to help her. She became very depressed. She explained she was due to give birth soon, so to take precautions she asked the doctor what to do ensure that she did not have a further 12

14 miscarriage (as she had had 4 miscarriages previously). She was told that that was normal and she could do nothing. She was horrified at their approach. She called Turkey, where they came from and asked her sister to ask the doctor over there. She said he was able to give her some very useful tips to stay healthy during pregnancy. She was very upset and said it they were maybe treated like this because they were foreigners? A worker at the Bangladeshi Support Centre spoke about her experiences in Ipswich. Her response: it is getting more racist where I live [Nacton Road, Ipswich area] and the police are also finding it hard to get on top of the problem. Indirectly this has a bearing on healthcare services. RECOMMENDATIONS BY RESPONDENTS This report will be shared with all healthcare providers, with the view that this will prompt further research and review of services provided to BME communities and barriers to access across the county. With regard to improvements, the following are suggestions (some alternatives or overlapping) generated by this research and that done nationally: 1. Where Language Line is unavailable or is inadequate (for example during medical examination, at hospital bedside, counselling) provision is needed for professional face-to-face interpretation (both male and female interpreters to take on board cultural differences) and translation services, in healthcare practices, especially in hospitals where more complicated medical language is used. This is essential as it will allow people to not only access services, but also ensure that correct diagnosis and/or medication is given. Also, one is able to understand body language if there is a face-to-face interpreter rather than someone interpreting over the phone. 2. Have a helpline or centre to help and employ people that can speak different languages in assisting people who speak very little/cannot English. 3. A need to retain existing outreach health care services and develop new ones. Services such as the Suffolk Community Refugee (SCR) Team helps BME users to get the help that they need from healthcare services. 13

15 4. Employ more healthcare professionals who also speak other languages as well as English. Alternatively train doctors here to understand their BME patients cultural needs. 5. Make it easier to access services by opening emergency surgeries hours for longer even for people who work, or live far from their GP surgeries, are able to access them some way in which genuinely ill people can be treated quickly. 6. Ensure that some BME people who do have language barriers are able to spend a little more time with their GPs and have longer appointments. 7. Train all healthcare professionals to use Language Line and faceto-face interpreters. 8. A support worker at the Bangladeshi Support Centre said that he wanted to see more community type activities and sessions at the hospital [Ipswich], which gets patients, and the wider community involved. He believes this would break down barriers, get NHS services promoted and encourage interaction with different ethnic groups. Alternatively, he suggested that there needs to provision for a drop-in facility for people from the BME community to walkin through the door and access support and information; and if necessary treatment. 9. Critically healthcare providers need to ensure they are working to their Race Equality Schemes and providing monitoring information to identify inequalities and areas that need addressing across Suffolk as required under the Race Relations (Amendment) Act

16 LIST OF CONTACTS Our many thanks go to the following organisations and agencies that helped us with our invaluable piece of research: 1. Bangladeshi Support Centre, Ipswich 2. Ipswich Hospital, Ipswich 3. Suffolk Community Refugee (SCR) Team, Ipswich 4. Ipswich Caribbean Association (ICA), Ipswich 5. CSV Media Clubhouse, Ipswich 6. Suffolk Refugee Support Forum (SRSF), Ipswich 7. Suffolk Association of Voluntary Organisations (SAVO) 15

17 APPENDICES 1. Health questionnaire see page Individual discussion questionnaire see page 23 Other references CRE website Unpacking the patient s perspective: variations in NHS patient experience in England. Commission for Health Improvement (2004) Black and Minority Ethnic Health Service Provision in Liverpool Primary Care Trusts Liverpool John Moores University (August 2001) Kensington, Chelsea & Westminster PCT BME Health Forum: Task Group on experiences of Muslim women using health services (2002) 16

18 APPENDIX ONE Ipswich and Suffolk Council for Racial Equality Black and Minority Ethnic (BME) access to health research project Background to project Ipswich and Suffolk Council for Racial Equality (ISCRE) is a registered charity with a commitment to working towards the elimination of racial discrimination and to promote equality of opportunity, and good relations, between persons of different racial groups in the county of Suffolk. As part of this project, we at ISCRE would like to know how you, as NHS service users, feel about accessing and using healthcare services across Suffolk. This will include the experience of using services such as language line or other such health projects specific to certain groups. The services covered will include: GP practices Dentists Hospital Trusts Mental Health Trusts In the context of your race equality scheme, public access means more than merely making information or services available. The following questionnaire is intended to be short and we hope that it will be useful in helping us to understand, recognise and act upon concerns you may have about using services, if any at all. It is confidential and you do not even need to include your name if you do not wish to. Please try to answer the questions as honestly as possibly, in as much detail as you can. There is also an additional section in the last section of the questionnaire where you can write any other comments you wish to. Before you begin, though, I d like to thank you for helping us to help you. Please return the completed questionnaire to: Sandy Phagura Ipswich and Suffolk Council for Racial Equality (ISCRE) 46A St Matthews Street Ipswich Suffolk IP1 3EP Tel:

19 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) Equal Opportunities Form Age: Gender: Male Female Nationality: Language of first choice: Do you have any disabilities? (if yes, please state) Ethnic group (please tick appropriate box): White Mixed British English Scottish Welsh Irish Any Other White background, please specify White and Black Caribbean White and Black African White and Asian Any Other Mixed background, please specify Asian, Asian British, Asian English, Asian Scottish or Asian Welsh Indian Pakistani Bangladeshi Any other Asian background, please specify. Black, Black British, Black English, Black Scottish or Black Welsh Caribbean African Any other Black background, please specify. Chinese, Chinese British, Chinese English, Chinese Scottish, Chinese Welsh or other Chinese group Chinese Any other Chinese background, please specify Any other Ethnic group 18

20 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) Health Questionnaire 1. Have you ever visited a General Practitioner, NHS dentist, hospital or other healthcare services in Suffolk? Yes No 2. In which town/area of Suffolk do you most use healthcare services? 3. If yes, roughly how many times have you visited any of the services referred to in Question 1, over the last year? More 4. Are you registered with a General Practitioner s surgery? Yes No 5. If not, why? 6. How easy did you find it to register? Very easy Easy Not very easy at all If not easy, why? 19

21 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) 7. Did you find that the service(s) that was provided for you over the last year were adequate for your needs? Yes No If yes, why/how? If no, why? 8. Are you registered with a NHS dentist? Yes No If not, why? 9. How easy did you find it to register? Very easy Easy Not very easy at all If not easy, why? 10. Did you find that the service(s) that was provided for you over the last year were adequate for your needs? Yes No 20

22 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) If yes, why/how? If no, why? Have you visited a hospital or any other healthcare services in the last year? Yes No If other, which service? Did you find that the service(s) that was provided for you over the last year were adequate for your needs? Yes No If yes, why/how? If no, why? 13.Do you have any other issues that are relevant to accessing healthcare services (i.e. disability; carer etc)? Yes No If yes, please specify 21

23 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) 14.What could be done to make access to services better/more appropriate for you?..... If you have anything else that you would like to tell us about, please do so using the space below:... 22

24 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) Individual discussion questionnaire APPENDIX TWO Name (Anonymous if preferred) Age (please tick) Older Ethnic group Nationality. Language of first choice 1. Have you visited a doctor/dentist/hospital/mental health services in the last year? Yes No Which service? 1. If so, how many times? More 2. How did you experience the service you accessed? Please be specific to each service. 23

25 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) 3. Have you been pleased with anything in particular when you have accessed these services? Yes No 4. If so, with what? Please be specific to the service you are making reference to.. 5. Was there anything that you were unsatisfied with or anything that hindered you being able to access the appropriate level of health care/services? Please be specific to the service you are making reference to.. 24

26 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) 6. What could have been done to make the access to services better or more appropriate for you? Yes No 7. Have you ever needed interpretation or translation services in accessing health services? 8. If yes, who has acted as one for you? Any additional information: 25

27 Sandy Phagura, Researcher August 2007 (ISCRE Volunteer) 26

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