Download - Ban Glades Hi Population and Mental Health
-
8/6/2019 Ban Glades Hi Population and Mental Health
1/47
London's global university
UCL RESEARCH DEPARTMENT OF MENTALHEALTH SCIENCES
DIVISION OF POPULATION HEALTH 2010
East London Bangladeshisand Mental Health
Relationships between religious andprofessional sectors
-
8/6/2019 Ban Glades Hi Population and Mental Health
2/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
2
Contents
INTRODUCTION ... ... ... ... ... ... ... ... 5
HOW THE PROJECT WAS ORGANISED ... ... ... ... ... 6
METHODOLOGY ... ... ... ... ... ... ... ... 6
THE PRE-RESEARCH FOCUS GROUP ... ... ... ... ... ... 7
KEY FINDINGS ... ... ... ... ... ... ... ... ... 9
THE POST-STUDY FOCUS GROUP ... ... ... ... ... ... 21
CONCLUSION ... ... ... ... ... ... ... ... ... 23
RECOMMENDATIONS ARISING FROM RESEARCH FINDINGS ... ... 26
GLOSSARY ... ... ... ... ... ... ... ... ... 30
REFERENCES ... ... ... ... ... ... ... ... ... 31
ORGANISATIONS WE COLLABORATED WITH DURING THE PROECT ... ... 32
APPENDICES
APPENDIX ONE - INTERVIEW SCHEDULE ... ... ... ... ... 34
APPENDIX TWO - GUIDANCE FOR INTERVIEWS WITH USERS AND CARERS ... 39
APPENDIX THREE - DELIVERING RACE EQUALITY IN MENTAL HEALTH CARE
TOWER HAMLETS ... ... ... ... ... 41
APPENDIX FOUR - ADVERTISEMENTS FOR TRADITIONAL HEALERS ... ... 46
APPENDIX FIVE - BANGLADESHI MENTAL HEALTH FORUM CONSULTATION 47
-
8/6/2019 Ban Glades Hi Population and Mental Health
3/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
3
UCL DIVISION OF POPULATION HEALTH - BLOOMSBURY CAMPUS
in collaboration with Tower Hamlet and Newham Mind
________________________________________
This research is funded through an Economic and Social Research Council Grant RES-000-
22-3074) for Social Anthropology Research.
Dr Simon Dein Senior Lecturer in Anthropology and Medicine [email protected]
Department of Mental Health Science, UCL Division of Population Health,
Bloomsbury Campus Charles Bell House, 67-73 Riding House Street, W1W 7EJ
Roland Littlewood Professor of Anthropology and Psychiatry at UCL.
He has written extensively on Medical and social anthropology of the Caribbean (Trinidad,
Haiti), Albania and Britain. He is the author of over 150 papers
Malcolm Alexander Community Development Adviser [email protected]
He works with the UCL Research Department of Mental Health Sciences, on the role of religion and
spirituality in mental health care amongst Bangladeshi communities in East London. He also has aspecial interest in the professional development of traditional healing in South Africa. Until recently,
he was a lecturer in Patient and Public Involvement in Health/Social Care, Power and
Empowerment and community development at Westminster University.
Lubei Ali Research Assistant
Lubei Ali was born in Bangladesh, came to the UK when 5 years old and has lived in Tower Hamlets
since then. Lubei studied History in Queen Mary University and Psychology at East London
University. She is currently completing her professional qualification in Counselling Psychology. Her
interests include exploring the challenges faced by Bangladeshis settled in Tower Hamlets from a
psychological stance.
Shajeda Dewan Research Assistant
Shajeda Dewan was born in the UK and studied in Bangladesh [Sylhet] for 9 years. Since 1989, she
has worked with Bangladeshi communities in England within health and social care, and was a
Children & Families Social Worker in Tower Hamlets (1995-2007). Shajeda is employed as Family
Court Advisor at Cafcass (Children and Family Court Advisory & Support Service)and as Tutoron the MSc Social Work course at London Metropolitan University.
-
8/6/2019 Ban Glades Hi Population and Mental Health
4/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
4
With special thanks to all of the service users and carers who agreed to be
interviewed and participate in the focus groups and:
East London MosqueImam Sheikh Abdul Qayum
Rayhan Uddin
Mind Tower Hamlets and NewhamMichelle Kabia - Director
Abdirashid Gulaid
Rosie Ahmed
Omar FaruqueColsum Akanjee
East London NHS Foundation TrustEleni Palazidou, Consultant Psychiatrist
Nick Bass, Consultant Psychiatrist
Johnson Akadiri, CPN
Tower Hamlets Primary Care TrustYaccub Enum, Public Health Strategist Tower Hamlets PCT
Darren Summers, Associate Director, Mental Health Commissioning
Social Action for HealthElizabeth Bayliss, Director SAfH
Working Well - Arif Miah (Working Well Trust)
Bangladeshi Mental Health Forum Myra GarrettAge Concern's Bangladeshi Mental Health Project - Syeda Ali
Sonali Day Centre -
Jusna Begum - Chaplin - London hospital & East London Mental HealthTrust.
Photocredits-Bengali Cultural Association of Londonhttp://www.bcauk.co.uk/ http://picasaweb.google.co.uk/bcauk1974
Design Polly Healy
-
8/6/2019 Ban Glades Hi Population and Mental Health
5/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
5
EAST LONDON BANGLADESHIS AND MENTAL HEALTH:
RELATIONSHIPS BETWEEN RELIGIOUS AND PROFESSIONAL SECTORS
Introduction
This project looked at the experiences of 30 members of the east London Bangladeshi
community who suffer with mental illness, and 30 carers (of people with severe mental
health problems), and explores their conceptualisations and attitudes towards mental
illness and healing. We examined how some Bangladeshi people in east London experience
mental health problems, and their beliefs, attitudes and feelings towards mental illness. Theproject also looked at the ways in which people with mental health problems get help and
treatment. We have particularly focussed on how informants saw religion and religious
healing working side by side with mainstream mental health services.
A community participation approach was used to enable users, carers, imams, and health
planners, community organisations, doctors, nurses and social workers, to get actively
involved in developing the project. A key part of the research explores users and carers
experiences of mainstream psychiatric services, including their experiences of racism,
gender inequality, stigma, and sensitivity to their culture. We believe the research findings
provide valuable insights into how people use religion to understand mental illness and its
role in treatment, and how beliefs in relation to the function of religion and the role of
mental health services coexist.
We hope to continue working with people in east London to ensure the research findings
benefit the community. Crucially, we hope the outcomes of this research will help improve
and support the development of mental health services for Bangladeshi people in Tower
Hamlets and other areas, and show how religious frameworks can inform knowledge of
mental illness and its treatment. To this end we have shown in this report how our
recommendations connect with the very progressive Tower Hamlets Primary Care Trust
(PCT) strategy: Delivering Race Equality in mental health care which was issued in 2007.
Keywords: Bangladeshis; East London; mental health; religion; healing; psychiatry
-
8/6/2019 Ban Glades Hi Population and Mental Health
6/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
6
How the Project was Organised
The study had four components:
A pre-study cultural appropriateness focus group An ethnographic study of patients attending day centres in Tower Hamlets An ethnographic study of people who care for relatives with mental health problems
in Tower Hamlets
A post-study focus group to discuss the findings and their dissemination
Methodology
Interviews were carried out by two research assistants; Lubei Ali and Shajeda Dewan in
either Sylhetti or English as preferred by the informant. The interview schedule is shown in
Appendix 1 and guidance notes for the interviewers in Appendix 2.
A pre-study focus group took place on January 29th 2009 at the Mind Open House in Tower
Hamlets, to develop the questionnaire. It was attended by service users and carers, a local
imam and local health and social care professionals, and was intended to ensure that the
questions used were culturally appropriate and worded to achieve the objectives of the
project.
Interviews were initially carried out at the Mind Open House and later at the Working Well
Trust, at the Sonali Day Centre, Family Action Tower Hamlets and in peoples homes.
Interviewees were given an assurance that all data would remain confidential and only used
where their anonymity could be assured.
A post-study focus group was held on 10th March 2010 at Mind Open House for those who
had participated in the research, in order to discuss the findings from the study and make
recommendations for local GPs, nurses, psychiatrists, social workers, other care workers,
the Primary Care Trust and the East London Mental Health Trust.
-
8/6/2019 Ban Glades Hi Population and Mental Health
7/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
7
The research findings will be disseminated to key people and organisations in the local
community and published in newsletters and academic mental health journals. We
particularly want the results of the research to be available to those who have participatedby disclosing information to us.
The Pre-Research Focus Group
The Pre-Study Focus Group was attended by 13 people and used to examine and discuss the
questions which were to be used for the interviews. Participants were invited who the team
felt would make a significant contribution to the development of the research. They were:
A service user A carer of a person with mental health problems Imam from East London Mosque CPN from Tower Hamlets (community psychiatric nurse) Two consultant psychiatrists Three colleagues from Mind Working Well Two UCL research assistants
We wanted to know if the questions were easy to understand, culturally appropriate and
were likely to provide information that would help to deliver the objectives of the research.
A facilitator worked with the focus group to lead and guide the discussion.
The group lasted for one and a half hours and went into very practical detail about the value
and meaning of each question. A few of the outcomes follow:
Dependents: The draft interview schedule asked the informant to disclose how many
children they have. The focus group advised that many people have children who do not
live with them, but who are their dependents. Thus a single person could have dependents
in the UK or in Bangladesh and a married person could have two families one in the UK and
-
8/6/2019 Ban Glades Hi Population and Mental Health
8/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
8
one in Bangladesh. The question would therefore be phrased in relation to dependents in
the UK and elsewhere.
Cause of the illness: The group discussed how to ask informants their view of their illness,
what may have caused it and if they agreed with their treatment programme. It also
considered how to get an answer when the informant agrees with only some of what their
doctor had told them about their illness. It was agreed to ask the informant: 'if you don't
agree with the doctor's diagnosis, what do you think is wrong with you'? and 'Have you
suffered from distressing events that may have contributed to your illness'?
Symptoms: The group discussed whether the word 'symptoms' is used in common parlance
and whether it could be translated easily into Sylhetti? The group agreed that talking about
'problems' or 'difficulties' was preferable, because 'symptoms' is a 'medicalised' term, which
may be misunderstood by informants. The group also agreed that asking an informant when
he/she ' first noticed their difficulties'; 'what they thought was happening to them'; 'what it
felt like' and 'what the person did about it', were critical questions.
Who did you talk to about your difficulties? The group agreed that the question was too
narrow and that informants should be encouraged to talk about the range of people they
had asked for help. Therefore, a probe would be used asking 'where the person got advice
from about their difficulties' - 'whether the person got advice from a GP, mullah, pir or
hakim' - ' what advice or help was offered and 'whether anyone went with them to get that
advice'.
-
8/6/2019 Ban Glades Hi Population and Mental Health
9/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
9
Key Findings
Sixty interview transcripts were analysed. The short summaries and extracts which follow
represent the main themes that emerged from the research. These themes were used to
develop a number of recommendations.
Diagnosis
The majority of users and carers were aware of the diagnosis given by the mental health
team. Abnormal behaviour and mood were generally seen to be medical rather than
religious problems, although the will of Allah was frequently given as the determining
factor.
Terms such as 'schizophrenia' to describe their illness were often given by users, whilst
carers tended not to name the diagnosis. Carers often described the illness mainly in
behavioural terms such as, 'he would eat messily' or 'she would go out 12 times a day'.
"I have chronic schizophrenia or delusional disorder. I am not sure which. I was first told it
was a delusional disorder. When I went to the hospital they told me it was chronic
schizophrenia. I hear voices. I confuse things between reality and experience dj vu. I
hallucinate things when I am ill, I fear being attacked by anyone. I get scared. I am scared of
them; they might shoot me or something".
Somatisation
Little evidence of somatisation as primary symptoms of mental illness was reported either
by those with mental illness or carers. However, some who experienced psychotic
symptoms described feelings of heat and burning. Most used terms such as feeling 'tension',
'depressed' and 'hopeless' to describe the symptoms of the illness. Most informants were
able to 'psychologise' their experiences of illness.
-
8/6/2019 Ban Glades Hi Population and Mental Health
10/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
10
"When something happens in his head he isn't aware what is happening to him. I can say
that his head isn't working, he feels really hot in his head. He has this burning sensation in
his feet and hands. I apply ice on his hand, feet and head".
Pagol
Several informants used the word 'pagol' to describe people with madness. Some could not
say what was meant by mental illness, but immediately understood when the word 'pagol'
was used.
People go mad in Bangladesh. Some become pagol due perhaps to genetic reasons
where it seems to run in families. Some due to jadoo-tunal. It seems to happen rather
differently in this country. If you sit at home and worry too much they say these things can
cause this.
Judgement
Some carers suggested that people with mental illness cannot distinguish between right and
wrong and expressed the anguish of continuously having to correct 'wrong' behaviour of the
person they cared for.
To keep a person like him cheerful, you need to talk a lot to them and reason with them. It
is very difficult to deal with this type of person. They always get you wrong. You need to
reason with them.
Mental illness andjadoo
In a few of instances, mental illness was equated withjadoo (black magic) caused by
someone who had a grievance, was envious of the person who had become ill or to try and
make them comply with family demands. Some people told us that those 'responsible'
would not be revealed by a mullah (if consulted) for fear of retribution:
-
8/6/2019 Ban Glades Hi Population and Mental Health
11/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
11
"The mullahs don't say who did the konni (witchcraft). They only say someone did it for
good reasons but it went wrong ... they said it would cause fights, that's why they
don't say. All mullahs said the same thing, even though they all live in separate areas."
Nothing bad happened because of me. Not by me you seen. You know people say that
somebody had done jadoo or that sprits have influence over someone he became ill all of
a sudden. I did not realise it in the beginning. I realised it later that he became jealous of
me. Like even if I did the right thing he would feel that I was not doing the right thing.
Nothing else.
Uses ofjadoo and evil eye
A frequent reason informants gave for jadoo was to secure a marital relationship between a
person from the UK and someone from Bangladesh, e.g. jadoo might be used to get a son
to marry his first cousin on his mother's side'. In other cases the evil eye (najr) is believed to
be used for revenge or as punishment.
I would have understood our problems if it had been an arranged marriage, but we were
not forced into our marriage, we chose each other of our own accord. People were jealous
of me because I have found a very beautiful wife and I think someone gave us najr (evil eye).
I think thats what it is.
Physical explanations for mental illness
Frequently, mental illness was seen as a problem caused by something being wrong or
malfunctioning within the brain, e.g. head injuries, or from having to cope with
overwhelming problems. One informant spoke of an abnormal heart giving rise to bad
feelings such as anger and worry leading to mental illness. Informants generally felt
mental illness could not be passed on 'through the blood'.
-
8/6/2019 Ban Glades Hi Population and Mental Health
12/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
12
"Everyone's tolerance level is different and not the same. When he had the accident at the
same time his father died, I feel that he couldn't take everything in and accept it and that is
why he became like that, he became shocked. He was his fathers favourite, which is why Ifeel he couldn't tolerate it. His brain was inadequate to take all this".
Typical explanations of causation
Many held social and psychological explanations for their illness including life events, major
trauma, relationship problems, worries and 'stress'. Some women spoke of physical abuse
by their husbands contributing to their illness. In this sense their explanations did not differ
from those found in studies of the majority white British population.
"When people worry a lot, they fall into depression. That affects them; sometimes people's
brain is affected. That's what I think, the rest only God knows".
His family left him on his own with his younger brother and went to Bangladesh when he
was 14 or 15. He was in secondary school. He might have got scared. His brain probably got
shocked from being fearful. He also got pressure from his family. He used to come back
from school, be on his own and cook and feed his brother and then go to the factory to
work there. From this pressure he was very fearful, this fear probably destroyed him. He is
very fearful even now.
Cultural stressors - dignity and honour
Some informants mentioned stressors which were specifically cultural, e.g. loss of social honour
or respect (izzat) due to disobedience of children, and some spoke critically of the lax moral
standards in the U.K. For others the fact that they were unable to send remittances back to
Bangladesh was a major stressor. Some felt stigmatised due to the fact that a family history of
mental illness negatively impacted upon marriage prospects. Stressors were often exacerbated by
poverty and overcrowding.
-
8/6/2019 Ban Glades Hi Population and Mental Health
13/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
13
"I have sacrificed my enjoyment and happiness and everything for the sake of the children
so that people can't talk about us, so I could maintain dignity and honour of the family. By
the grace of Allah we have not suffered loss of honour. We would have suffered if I was notstrong."
Concurrent explanatory models for illness
Although spirit possession, influence of ghosts, satan and witchcraft were frequently cited
as explanations for illness (ufri, jadoo, konni), informants often held psychological and social
explanatory models of illness concurrently with religious explanations. Little tension was
expressed between these different explanatory models. Informants usually did not discuss
religious and cultural issues with their doctors.
"He is receiving medical treatment. We are also going to mullahs. They [doctors] don't
believe in these kind of things such as tabiz and thing, I don't know (what works)".
"Did you tell the doctors about your husband seeing the mullahs?"
"Yes. They said it is good, if it is his religion".
Beliefs about the role of imams in healing
Many people had sought the help of imams and traditional healers particularly for
psychological symptoms, but not for physical symptoms such as pain. Some differentiated
between the two. Some informants believed that there were mullahs who could cause
people to become mentally ill by performing jadoo, or heal them by the recitation of verses
from the Qur'an. Feelings of scepticism and ambivalence were frequently expressed
towards healers, especially the fact that consultations were expensive and outcomes
equivocal.
The imam did not charge much. Initially he took a little and then asked for 150 more. But
he got worse. So we took him to the hospital. We did not go back to the mullahs for tabiz or
anything else.
-
8/6/2019 Ban Glades Hi Population and Mental Health
14/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
14
My daughter has a problem in her walking and talking, so many people have suggested to
do tabiz and to go to Bangladesh. Apparently, in Bangladesh they dig a hole in the ground
and bury you half way and then exorcise you. I said no, I dont want to go, I am scared. Allahwill help make my daughter better. I dont believe in those kinds of things.
Diagnosing by default
Many informants described the process of getting help with mental health problems.
Treatment often started with a local imam who would try prayer and encourage the person
with the illness to pray. Blowing over with holy water, reciting verses of the Quran over water, oil
or even food and then eating/drinking or applying on ones body, was also commonly described.
When religious healing failed, in some cases, imams suggested that black magic could be the cause,
and treatment attempted with some form of exorcism. If these methods failed, imams usually
advised people to go to hospital for help.
"He first said it was black magic; then he said it was something affecting his brain, because it
didn't get better after his treatment".
If you have faith and recite Gods words and blow over water and drink it, theres nothing
wrong. If somebody recites a verse of the Quran and blows onto a glass of water and asks
you to drink it, nothing is wrong with that.
Healing strategies based on prayer
Prayer, faith in Allah and reading the Quran emerged as common coping strategies and
were held to be helpful. Illness was often held to be Gods will and could be alleviated by
prayer. Allah can help a person cope. Some informants were fatalistic, arguing that nothing
could be done about the illness; they just had to accept it. Some saw it as a test of faith,
which could strengthen them. Others saw it as a punishment which required prayer. When
people are desperate, they may go to pirs or try other approaches to healing, often after
seeing many other healers.
-
8/6/2019 Ban Glades Hi Population and Mental Health
15/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
15
They tried everything, they went to many doctors and mullahs, they went to see Fultoli
Saab, things like that. He went to so many places in Bangladesh. He got tabiz, he used tabiz,
he did these kind of things, nothing helped he was the same. One mullah says its konni,another says its jadoo and another says its satan. His parents did treatment for these
things, gave money for it. Towards the end it seemed that nothing worked apart from going
to hospital. Its only controlled by hospital.
Experiences of mainstream services
Families were generally satisfied with the current NHS psychiatric help that they received.
Many thought that the medical care was adequate or good. But some felt that their GPs
dismissed their problems and some informants had memories of traumatic experiences in
inpatient facilities, which continued to be disturbing for them. For some, communications
with doctors and other care staff were problematic because they felt interpreters did not
correctly convey meaning and information about the illness during consultations.
St Clements used to be scary. I used take my children (when I went to see my husband).
Staff dont care for you. I have seen this. You can die from your illness - they dont care. Only
when the patient hurts you or others they admit them, otherwise they say hes not harming
anybody. It doesnt matter what you do at home. If you need help you go through so much
and have interviews. I dont think its helpful.
The social worker is great, because she is here, I am finding it helpful. It has been easier to
get him into hospital. Before this it was hard. If I call the social worker she comes and takes
him to hospital.
-
8/6/2019 Ban Glades Hi Population and Mental Health
16/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
16
Carers distress
Some carer's described difficulties with the tolerance level of the person they cared for:
Whoever has mental illness they cant think much; when they think a little they are
affected quite quickly! I mean their tolerance; strength level of the brain is minimal. Their
brain is not strong, their tolerance level is low. I dont have any parents, I am the youngest,
and I have suffered a lot in this world. (she is crying) you have to have some tolerance
and confidence (to cope well).
The suffering of carersSome carers spoke of the immense suffering and hardship involved in caring for someone
with a serious mental health problem and the impact on their mental health and physical
illness as a result of caring.
This illness is very dangerous, I am telling you. It is a very dangerous illness. The person
who lives with this type of patient suffers a lot in all sorts of ways an immense level of
suffering; you can ask the Consultants they can tell you.
Lack of support for carers
Some carers described feeling fed-up with looking after someone with a mental illness.
Many spoke about neglecting their own well-being. Having an outside agency to support
them was often seen as helpful. Most were not hopeful about recovery for the person they
cared for. They often felt the family were not taken into account by the mental health
services, as the unwell person was seen as the focus of attention, rather than the family.
Carers were frequently unaware of access to professional support and lacked information
about benefits and carers assessments. Many reported lack of support generally. Some
female carers reported that their husbands had been physically abusive towards them but
did not have support to deal with this issue.
-
8/6/2019 Ban Glades Hi Population and Mental Health
17/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
17
Becoming a carer through marriage
Often carers did not choose to take on this role; it was undertaken out of duty, e.g. via
marriage. Carers often spoke of the struggle to cope with their partners mental illness and
the need to reason with them and to persistently try to resolve problems through reasoning.
I pray to God, that God doesnt make anyone suffer like me. The pain of it. My sister-in-
laws husband knows and I know. Instead of a mental person, someone without an arm, leg,
physical disability is better, compared to a mental person. You tell them one thing, they do
something else. It cant worse then this. There is so much hurt in this experience.
To get better you have various opportunities. When he was healthy, was good, was
handsome he didnt get better then, now he will not be able to get better, what the hell!
I didnt know he had an illness until four weeks after our wedding. When I first met him I
saw something different and I felt bad. His older brother used to keep him away most of the
time, so as not to let him get close to people. His brother was very clever. We got married in
December, his brother died in February, my husband became mad, I sent him to hospital. He
stayed in St Clements Hospital and now he continually needs to go into hospital.
Traumatic marriage
Many carers were not aware of their husbands mental illness prior to marriage and
consequently some felt trapped within a traumatic marriage, and in some cases in-laws
were unsupportive. Caring was seen as a full time occupation and in some cases resulted in
stress related symptoms in carers. Many service users suffered from associated physical
illnesses such as diabetes, which further increased the carers burden. Wives who were
unaware of their husbands illness prior to marriage felt they were unable to ask for a
divorce and were generally committed to caring for their husband for life.
I didnt know neither did my family, we didnt know anything. His father said he had no
illness, we asked him. They said that they were from London and he didnt have any kind of
illness.
-
8/6/2019 Ban Glades Hi Population and Mental Health
18/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
18
My husband has been suffering from depression for 15 years. So after taking care of him
and the children ... Do you know about the illness he suffers from? Whichever family has got
a patient like this it is impossible for the wife to stay alright. If the husband has got this kindof illness then for the wife to stay is very difficult. Not everybody would be able to cope. I
was very strong. But now it is getting too much for me. I am also suffering mentally now It
seems like my mind is dead. I am just plodding along for the sake of the children.
Coping as a carer
Some carers had developed effective strategies for coping with the illness of their partner.
After the initial fear and confusion about the illness, some of interviewees understood the
illness and had developed strategies for supporting their partner during their illness.
I used to think this guy is mad. Would he kill us? Gradually I got used to it. Now I know
more about it. When it gets worse, when it comes, I quickly call the social worker, or tell
someone in the Project. I cant talk at home at the time, he is wary about people talking
about him, he is suspicious of being sent to hospital. To him it seems he is well, why shouldhe be admitted to hospital. At the time I dont talk in front of him, I hide and talk away from
him. I have to arrange this and get him admitted to hospital.
Mental illness and status within in the family
Carers also reported that the role of the person they cared for changed dramatically within
the family. They might be treated like a child, lose status and play a minimal role within the
family.
The sons who are well, the family think these sons family are special and we are the
dustbin. They talk back, my husband cant do that. They dont give you any value or
importance or care about you. If you say anything, they say five things back.
-
8/6/2019 Ban Glades Hi Population and Mental Health
19/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
19
Healing and attribution
The majority received medication but knew little about their effects, although side effects
were commonly reported. Positive effects tended to be attributed to the will of Allah.
Most informants said very little about access to psychological treatments such as
counselling and even if they received it they generally felt that talking about the problem
wouldn't take it away. What they needed was practical help.
I have a tension. I worry about whether it will get better and whether Allah would pardon
him What can I do, I can ask Allah to pardon him!
They are not looking at what will help us. We are not just worried about his mental health,
we have to be concerned about everything to do with him including his physical health and
we need help with that. If you talk about your worries they send you to a counsellor. You
have to go there and talk about your worries. They talk to you for a while and get rid of your
worries for the time.
Social stressors and isolation
The narratives often suggested that the lives of those suffering with mental illness were
empty apart from their attendance at day centres, which they generally found to be helpful
(music, sowing, cooking, and talking groups). Most service users led lives that were isolated
from the wider community and this was exacerbated as they often spoke little or no English.
The majority were unemployed. Stress was increased by poor accommodation and
overcrowding. Issues of racism and cultural insensitivity were rarely mentioned. Some
informants experienced abuse from neighbours, but generally they were treated well by
outsiders and neighbours, especially if there was a shared belief that the illness came
through the will of Allah.
-
8/6/2019 Ban Glades Hi Population and Mental Health
20/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
20
I do not get much leisure time you see. The household chores cooking, cleaning, taking
the kids to school, going shopping! Then we need to pray five times a day so the time flies
like that. I do not get much time on my hands. If I have time for a rest I will take it otherwisenot. I cannot afford a hobby. I used to fancy doing a few things in the past, but now thats
gone. I do not even feel that happy if nice things happen. We have just survived somehow
and brought up the kids.
Sharing of benefits
For female service users having a husband who has a second wife in Bangladesh to whom
remittances were paid out of UK income was a considerable additional stress and a great
burden.
Responding to need
In terms of expressed needs, these were generally of a practical nature: help with finances
and access to benefits and housing, help getting out, bus passes or losing weight. Some
informants had unrealistic expectations of the ability of the Council to meet their housingneeds. Several mentioned difficulty with communications with the authorities and asked for
help with this.
Recreation and hobbies
Responses to the question about hobbies drew a perplexed response from many carers. The
idea of free-time not spent caring for children, husband and the home was difficult to
conceptualise. This issue may have both a cultural and class dimension. Even day centre
activities are centred on work.
If you have wealth then you feel like doing things ... But I could never afford anything like
that you see. I have just looked after the kids, my husband managed the finance and we just
survived somehow and brought up the kids. We wanted to give the children education, so
we have done our best as much as we could.
-
8/6/2019 Ban Glades Hi Population and Mental Health
21/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
21
Post-Study Focus Group
After completion of the research a post-study focus group was held at the Mind Open
House, attended by users and carers, the PCT, Mind, mental health workers, counsellors,
and colleagues from Working Well and Family Action. The research data was presented to
the meeting and the detailed discussion led to important conclusions including the
following:
Carers coping strategies
Carers often tolerated extremely difficult and frightening situations, coping with mental
illness and bringing up large families with very low levels of resources. Carers, especially
female carers, usually recognised that caring was for life and stoically faced the burden of
poverty, overcrowding, looking after the sick person, their children and sometimes other
relatives.
Carers often commented that they are not involved sufficiently in developing and
monitoring care plans and there appeared to be a dearth of information about access to
services and carers assessments. Carers often said they feel marginalised.
Spiritual solutions
People often seek a cure through the Quran, but may find themselves in crisis when this
does not work. Collaboration is essential not just between imams and psychiatrist, but with
the whole mental health team; social workers, psychologists, psychiatrists - to get a holistic
view. Psychiatrists may be unsupportive when an inpatient wants to have rukia (healing
with the Quran) done in hospital; the psychiatrist may not give permission for this type of
treatment and this suggest that better training may be required for some mental health
teams in relation to patients spiritual needs.
-
8/6/2019 Ban Glades Hi Population and Mental Health
22/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
22
Knowledge about medication and social issues
The group felt that many people taking medication for mental health problems did not
understand enough about their medication or its side effects. Much better information in
the persons own language is needed, e.g. in relation to weight gain, excessive sleep and
constipation (a serious side-effect of Clozapine). A need was identified for more holistic
services, where staff listen to service users and carers feelings and experiences about the
illness, about the effects of medication and social problems related to the illness. There was
a strong feeling that the role of CPNs needed to be expanded beyond medication control
and advice, to a more holistic approach with users and carers. More and better trained
advocates and interpreters are also needed from the Bangladeshi community to develop
better engagement. More knowledge and understanding is needed in the community about
the difference between minor and major mental illness, e.g. schizophrenia, anxiety and
depression.
Patients Rights
The focus group felt it essential that service-users and carers knew a great deal more about
their rights to health and social care. Many users and carers said they felt disempowered
and need advocates to support them when they or the person they care for are not getting
the service they need.
-
8/6/2019 Ban Glades Hi Population and Mental Health
23/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
23
Conclusion
The authenticity of this study was strongly supported by carrying out the interviews in the
first language of the informant, by research workers whose first language is Sylhetti. We
were consequently able to gather data from significant numbers of carers and users who
could not speak English and had little formal education in their home country or the UK.
Everybody interviewed in this study; users, carers and people providing local services
identified areas where better recognition of need in relation to culture and family history,
could result in improved local services for Bangladeshi communities in East London.
A key issue emerging during the research related to communications between service users,
carers and local services, including the fact that the majority of informants did not speak
English and had poor prospects of social interaction or employment outside the Bangladeshi
community.
Although there was a lot of discussion about religious and spiritual issues during the
interviews, informants did not generally appear focussed on a single approach to healing,
either through religious or medical routes. It appeared that people went through a hierarchy
of treatment options, which might have included seeking advice and ritual healing from
local mullahs, and visiting healers, social workers, GPs and psychiatrists. But, it appeared
from our data that when a person has a mental illness they may get more sympathy in the
family, if the explanation given is a spiritual one, e.g. jinn possession. Such possession did
not result in the person being seen as a victim. However, people with mental health
problems may delay getting help because of the plausibility of spiritual explanations for
their illness, and because of poor knowledge of the NHS and social care systems. This
suggests a case for escalating joint work between imams, community workers and
psychiatrists in the treatment of people with mental health problems. However, this
approach might be seen by some users as limiting their opportunities for receiving help, e.g.
in the case of people with paranoid beliefs, who might see joint work between religious and
medical healers as conspiratorial, invading their privacy and thus reducing opportunities
for healing in either system.
-
8/6/2019 Ban Glades Hi Population and Mental Health
24/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
24
Our research suggests that we need a system where imams know when to refer to
psychiatrists, and psychiatrists are prepared to refer back to imams who have mental health
training.
A lot of the data collected during the project concerned the impact of mental health
problems in marriage. Young people with mental illness are sometimes taken to Bangladesh
for marriage and it was reported that in some cases their past medical history was
concealed to secure better marriage prospects. Some people appeared to believe that
marriage would help a persons recovery from mental illness.
Women appeared more tolerant than men when mental illness occurred within a marriage,
e.g. when husbands became ill with a mental illness, wives would usually stay committed to
their husbands, whereas husbands were more likely to divorce a wife with a mental illness
or take a second wife in Bangladesh.
An important issue brought to the post-study focus group related to different cultural
practices for women of Bangladeshi decent born in the UK, for whom a divorce is more
easily accomplished than for women born in Bangladesh. It was also suggested that when a
man has a mental illness, a woman remaining in the relationship may become more
empowered, e.g. she may have greater control over family finances and more easily be able
to send remittances to her family in Bangladesh.
Belief in the agency of spirits through jadoo, konniand ufriappeared normalistic amongst
many of those interviewed, but most did not believe that these spirits had a powerful role in
the development of mental illness or its cure. Physical illness or overwhelming life problems
were more likely to be cited as a cause of mental illness, and an important finding from the
research was that most people accepted a psychiatric diagnosis and the treatment offered
by psychiatrists as authentic.
The research did not support the long-held view that people from south Asia were more
likely to somatise their mental illness, i.e. express symptoms of the illness in physical rather
than psychological terms. Users generally did not have any difficulty in describing their
feelings or their pain, but the concept of a mental illness was sometimes more difficult to
understand and discuss than the more dramatic Sylhetti term pagol (madness).
-
8/6/2019 Ban Glades Hi Population and Mental Health
25/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
25
The willingness of practitioners to see themselves as members of an extended community
team or mental health pathway, enables people with mental illness to access help from
one member of the team and be referred to, or access other practitioners; whether fromthe medical or spiritual dimension, e.g. the consultant psychiatrist seeking help from the
imam and the imam seeking help from the social work or doctor vastly different, but
complementary frameworks of care and treatment.
The developing relationship between the East London mosque and the Tower Hamlets
Primary Care Trust provides an important step forward for an enhanced role for imams in
guiding people who visit them with a mental health crisis towards appropriate mental
health services, without creating a division between the medical and spiritual aspects of
healing. Our findings show that most people saw the religious and medical aspects of
treatment as part of a continuum if one doesnt work, another is tried, which could
include imams, visiting healers, perhaps travelling to Bangladesh to visit a well known imam,
or seeing a CPN, social worker or psychiatrist, with the voluntary sectors often providing the
cement and complementary services that join the different approaches together.
We have shown here how our 18 recommendations connect to Tower Hamlets PCTs
Delivering Race Equality in Mental Health strategy. We have made 20 requests for
information from Tower Hamlets PCT and the East London NHS Foundation Trust on the
development of their race equality strategies, but they failed to supply any information. We
therefore welcome the joint consultation between Tower Hamlets PCT and the Bangladeshi
Mental Health Forum in November 2010, to explore community needs and service gaps for
mental health service users and carers (appendix five).
We hope that our 18 recommendations to the NHS and local government will build on the
work that is already in progress and lead to substantially better, more effective and safer
local services for users of mental health services and their carers in Tower Hamlets.
-
8/6/2019 Ban Glades Hi Population and Mental Health
26/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
26
Recommendations arising from research findings
Education and teaching
1. Medical/health education establishments should review their teaching on
somatisation and mental illness in relation to people of South Asian origins who have
migrated to Britain.
2. Teaching with all professional groups in the health arena should reflect on the
relationship between ethnicity, and the language used to describe symptoms and
feelings associated with mental illness. There should be a focus on understanding
the terminology used by patients and carers and the meanings associated with their
descriptions of mental illness. Western concepts of mental illness may not readily
translate into Sylhetti.
3. Medical and nursing practitioners need to aware of the common association between
mental illness and 'black magic', which can suggest an act of deliberate harm by
another person, perhaps someone in the family. Such beliefs could be wrongly
associated with delusional or paranoid ideation. Non-Muslim practitioners need to be
aware of the range of beliefs associated with jinn and their potential influence on mental
illness and emotional distress.
Cross reference: 4. Staff and Cultural Capability - Delivering Race Equality in MH/TH Appendix 3
Collaboration between the NHS and religious healers
4. The collaborative work between mental health services and imams should be strongly
supported as a means of reducing the tension between religious and medical explanations of
mental illness and creating greater understanding of the terms and descriptions of illness
used in each system. This would enable people to speak more freely about their feelings.
-
8/6/2019 Ban Glades Hi Population and Mental Health
27/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
27
5. Collaboration between mental health services and imams should promote awareness of the
disadvantages of using high fee, cure-all traditional healers. A local register could be kept
by Tower Hamlets trading standards to record any adverse information about traditional
healers who advertise locally (see Appendix 4).
Cross reference: 7. Community Engagement - Delivering Race Equality in MH/TH - Appendix 3
Public information
6. User and carer focussed information about mental illness in Sylhetti produced in a range of
formats, e.g. as DVDs, would make a valuable contribution to peoples knowledge about
causation, treatment and the life history of mental illness, as well as neutralising peoples
fears about going pagol. Information about the potential side-effects of medication could
also be provided through this means.
Cross reference: 8. Mental Health Promotion - Delivering Race Equality in MH/TH - Appendix 3
Cultural information for health professionals
7. Information for health professionals about some of the major causes of stress for peoplefrom Bangladesh would make a valuable contribution to the knowledge of local
practitioners. It could also include information about the meanings associated with social
honour and the impact that loss of social honour can have on the economic and social
status and prospects of families.
Cross reference: 4. Staff and Cultural Capability - Delivering Race Equality in MH/TH - Appendix 3
Familial and social pressures
8. The impact on women and children where husbands have a second wife and family in
Bangladesh, needs to be considered in relation to the economic health and welfare of
families in the UK and the mental health of the British wife and children.
Cross reference: 4. Staff and Cultural Capability - Delivering Race Equality in MH/TH - Appendix 3
-
8/6/2019 Ban Glades Hi Population and Mental Health
28/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
28
Interpreting services
9. Interpreting services in the mental health arena should be reviewed to ensure that
interpreters also advocate for the patient/carer during mental health consultations, and
have specific knowledge and understanding of mental health issues.
10. Interpreters should have professional qualifications in health interpreting, i.e. the Diploma in
Public Service Interpreting of the Institute of Linguists (mental health option).
11. The NHS should establish in collaboration with the Institute of Linguists, a universal
system that ensures all patients have access to professionally accredited
medical/health interpreters.
12. Ambulance services staff working in Tower Hamlets should develop the skills to
communicate in basic Sylhetti to ensure better communications with Bangladeshi
patients who are in distress.
Cross reference: 2. Interpreting and Translation - Delivering Race Equality in MH/TH Appendix 3
Needs of carers
12. Carers of people with mental health problems should be targeted to ensure that they are
receiving a personal carers assessment, access to professionally led support networks and
information about access to appropriate benefits.
13. Support and training should be offered to carers in their first language to assist them with
the care of family members with serious mental health problems.
14. Advice for carers should include dealing with domestic violence and advice to people
unexpectedly coping with a partners mental illness, e.g. shortly after marriage. It may also
be helpful to offer training in terms of coping with different roles within the family, e.g. role
of a husband and as a parent in a family coping with severe mental illness.
Cross reference: 9. Race Equality Action Plans - Delivering Race Equality in MH/TH Appendix 3
-
8/6/2019 Ban Glades Hi Population and Mental Health
29/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
29
Use of Day Centres
15. Attendance at day centres for service users and carers should be actively encouraged,
especially where families are coping with the heavy pressure of caring for children.
16. A focus on acquisition of language and literacy skills would greatly empower service users
and carers, to enlarge their social networks and their ability of support their children, access
services and reduce individual and family stress.
17. A focus on support for recently married people who find they are caring for a partner with a
mental illness is strongly recommended.
Cross reference: 9. Race Equality Action Plans - Delivering Race Equality in MH/TH Appendix 3
Action Plan - Delivering Race Equality in Mental Health - Tower Hamlets
Primary Care Trust (PCT) - November 2007
1. Reduce and eliminate ethnic inequalities in mental health service
experience and outcomes.
2. Develop the cultural capability of mental health services
3. Engage the community and promote an increased understanding around
mental health and options for care and treatment, and improve mentalwell-being in individuals and communities.
See Appendix Three
-
8/6/2019 Ban Glades Hi Population and Mental Health
30/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
30
Glossary
Black magic Malevolent influence through supernatural means
CPN Community psychiatric nurse
Ethnographic Study of culture and ethnicity - customs and differences
Evil eye A fear of envy in the eye of another, especially one who stares.
Possessors of the evil eye may harm unintentionally
Exorcise Eliminate spirit possession
Foo Blowing over with holy water (reciting verses of the Quran over
water oil or even food and then eating/drinking or applying on ones
body.
Fultoli Saab Fultoli Saab - A great Wali (representation/mediator/guardian) of
Bangladesh who died on January 15th 2008.
Hakim Herbal healer
Informants Those we interviewed
Imam Islamic cleric
Izzat Honour or respect
Jadoo
jadoo-tunal
Form of witchcraft
Jinn Spirit or supernatural being held to exist in the Quran (Jinn are
distinguished from human in that they are made of fire)
Konni Witchcraft
Mullah Healer also has Islamic training in the Qur'an, don't know the specific
training they receive.
Najr Evil eye
Pir Wise man, holy man
Psychologise Analyse in emotional or mental terms
Rukia Healing with the Quran
Sheytan The devil
Tabiz Amulet containing verses of the Quran
Ufri Ill wind
-
8/6/2019 Ban Glades Hi Population and Mental Health
31/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
31
References
Dein, S., Alexander, M. and Napier, D. (2008) Jinn, Psychiatry and Contested Notions of Misfortune
among East London Bangladeshis. Transcultural Psychiatry. 45 (1): 31-55. March 2008
Dein, S. & Sembhi, S. (2001) The use of traditional healers in South Asian psychiatric patients
in the UK: Interactions between professional and folk remedies. Transcultural Psychiatry,
38(2), 243-257.
Eade, J. (1994) Identify, nation and religion: Educated young Bangladeshi Muslims in
Londons East End. International Sociology, 9, 377-394.
Eade, J. (1997) The power of experts: The plurality of beliefs and practices concerning health
and illness among Bangladeshis in contemporary Tower Hamlets, London. In M. Warboys &
L. Marks (Eds.), Migrants, minorities and migrants, minorities and health: Historical and
contemporary studies (pp. 250-271). London: Routledge.
Gardner, K. (2001) Global migrants, local lives: Migration and transformation in rural
Bangladesh. Oxford: Oxford University Press.
Gardner, K. (2002) Narrative, age and migration: Life history and the life course amongstBengali elders in London. Oxford: Berg.
Tower Hamlets Primary Care Trust (2007) Delivering Race Equality in Mental Health in
Tower Hamlets - An Action Plan. November 2007. London: Tower Hamlets PCT.
Tower Hamlets Mental Health and Well Being Services Directory (2010). London: Tower
Hamlets PCT. http://www.towerhamlets.nhs.uk/mentalhealth/?entryid4=2169
Wilson, M. ((2009) Delivering Race Equality in Mental Health Care: a review.
National Mental Health Development Unit. London: Department of Health.http://www.nmhdu.org.uk/silo/files/delivering-race-equality-in-mental-health-care-a-
review.pdf
-
8/6/2019 Ban Glades Hi Population and Mental Health
32/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
32
ORGANISATIONS WE COLLABORATED WITH DURING THE PROJECT
Age Concern's Bangladeshi Mental Health Project http://www.acth.org.uk/
Age Concern Tower Hamlets
82 Russia Lane, E2 9LUTelephone: 020 8981 7124
Fax Number: 020 8980 1546
Email: [email protected]
Bangladeshi Mental Health Forum
Email: [email protected]
East London Mental Health Trust http://www.eastlondon.nhs.uk/about_us/contact_us.asp
Trust Headquarters, EastONE22 Commercial Street, E1 6LP
Telephone: 020 7655 4000
Fax Number: 020 7655 4002
Email: [email protected]
East London Mosque & London Muslim Centre http://www.eastlondonmosque.org.uk/
46 92 Whitechapel Road, E1 1JX
Telephone: +44 (0) 20 7650 3000
Fax Number: +44 (0) 20 7650 3001
Email: [email protected]
Mind Tower Hamlets and Newham http://www.mithn.org.uk
13 Whitethorn Street, E3 4DA
Telephone: 020 7510 1081
Fax Number: 020 7537 7944
Email: [email protected]
Social Action for Health http://www.safh.org.uk/safh_new/scripts/page/home.php
The Brady Centre
192 Hanbury Street
London E1 5HU
Tel: 020 7426 5370
Email: [email protected]
Sonali Gardens Day Centre http://www.sthildas.org.uk/id2.html
St. Hilda's East Community Centre, E2 7EY
Telephone: 020 7739 8066
Fax Number: 020 7729 5172
-
8/6/2019 Ban Glades Hi Population and Mental Health
33/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
33
Tower Hamlet Primary Care Trust http://www.towerhamlets.nhs.uk/welcome/
Aneurin Bevan House
81 Commercial Road
London E1 1RD Telephone: 020 7092 5000
Working Well Trust http://www.workingwelltrust.co.uk/
126-128 Cavell Street,
Whitechapel, E1 2JA,
Telephone: 020 7247 1910
Email: [email protected]
-
8/6/2019 Ban Glades Hi Population and Mental Health
34/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
34
APPENDIX ONE
Interview ScheduleRe-drafted questions following the Focus Group Amended February 8
th2009
i) Biographical features: Part One The Service User
1. What is your age?2. Where were you born?3. If you were not born in the UK at what age did you come to the UK?4. What were your reasons for coming to UK? Please tick the relevant box:
Came with parents ... ... ... ... ... ...
Joined spouse ... ... ... ... ... ...
Came to visit relatives and remained ... ... ...
Came for work ... ... ... ... ... ...
Came as an adult- hold British Citizenship by birth ... ...
Asylum/Refugee ... ... ... ... ... ...
Other ... ... ... ... ... ... ...
5. What is your religion?6. Where do you live?
Stepney Bethnal Green Wapping Poplar Bow Isle of Dogs
Other
7. How long have you lived in that area?8. What type of education did you have? [Primary/secondary/college/university/ other]9. In which country did you receive the education?10. What qualifications do you have?11. What language do you speak at home?12. What language do you predominantly speak with other people or groups?13. What work do you do?14. Do you live alone?15. If not, who do you live with :
Family ... ... ... ... ... ... ... ...
Wife ... ... ... ... ... ... ... ...
Husband ... ... ... ... ... ... ... ...
Children ... ... ... ... ... ... ... ...
Friend/s ... ... ... ... ... ... ... ... Other ... ... ... ... ... ... ... ...
-
8/6/2019 Ban Glades Hi Population and Mental Health
35/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
35
16. Are you married?17. Do you have children? If so, how many children do you have?18. Do all your children live with you? If not where do they live?19. Do you have any family members who live outside the UK?20. What are your interests and hobbies?21. Are you involved in or attend community groups or activities? Please tick:
Mosque ... ... ... ... ... ... ... ...
Other place of worship ... ... ... ... ... ...
Day centre ... ... ... ... ... ... ... ...
Clubs ... ... ... ... ... ... ... ...
Sports Clubs ... ... ... ... ... ... ...
Leisure Centre ... ... ... ... ... ... ...
Voluntary organisations ... ... ... ... ... ...
Other ________________________________________________________
22. Can you name the groups you are involved with/attend?23. What do you do there?
Part-2 The Service User
ii) Introduction to the problem:1. Why do you attend the Mind day centre?2. Is there a name for the illness/difficulties which led you to attend the Mind day centre?3. Can you describe your illness/difficulties?4. What does your doctor call this illness /difficulty?5. What does your doctor think is the cause of your illness/difficulties?
Probe: Which doctor was that: GP....................Psychiatrist .......................
6. Do you agree with your doctors opinion about the cause of your illness?7. If you dont agree with your doctor, what do you think caused your illness?
Probe: Food ..... Lifestyle ...... Weather ....... Physical or emotional trauma.......
8. Have you had any particularly distressing experiences in your life?Probe: Domestic violence ...... Relationship difficulties with others ....... Experience
of migration financial difficulties....... Loss of business ....... Significant
events of birth/death. ....... Anything else .......
-
8/6/2019 Ban Glades Hi Population and Mental Health
36/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
36
iii) How did your illness/difficulties start?1. How did your difficulties/illness began
Probe: Early life ....... Childhood experiences ....... Giving birth etc .......
2. Can you describe what it was like?Probe: How did you feel .................
3. What did you think was happening to you?4. How did it feel?5. What did you do?6.
iv) Getting more help:1. Did you get advice or information from others?
Imam ..... Pir ..... Mullah ..... Hakim ..... Priest..... Traditional healer .....
Social worker ..... CPN ..... Other .....
Probe: What advice, information or help did they offer you?
2. Did you find their advice helpful?Probe: In what way?
3. What did they say to you about your illness/difficulty?4. Was it easy to understand their advice?5. Did the person you got advice from charge you?
Probe: If so how much?
v) Information:
1. Have you asked anyone else to help you understand more about your problem?
Probe: Who have you asked?
2. Have other people said anything about your problem?
Probe: Who was that?
3. What things have other people said?
vi): Views on treatment:1. Have you received help for your problem?2. Is so what kind of help?
Probe: Medical drugs ...... Counselling ...... Spiritual ...... Religious......
Herbal ...... Homeopathy ...... Other ......
3. Can you describe the help you received?Probe: Medicine ...... Sacrifices ...... Charity ...... Prayer ...... Changes in daily
routine...... Behaviour change etc ...... Blowing ...... Wearing
talismans ...... eating/drinking special water/food or any other action
4. Did this help work?5. Which helped most?
-
8/6/2019 Ban Glades Hi Population and Mental Health
37/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
37
6. Has the help you received had any side-effects?7. If someone came to you with problems similar to yours what would you suggest they do?
Probe: From a Doctor ...... Imam ......... CPN .........Social worker
Spiritual healer............ Other...........]
vii) Attitude:1. How do you feel about your illness/difficulty?2. Do you talk about your illness/difficulty with other people?
Probe: Family Friends The imam Neighbours
GP Social worker
3. Do you mind other people knowing about your illness/difficulty?4. How do people treat you?
Probe: Do you feel you are treated differently because of your
illness/difficulty?
Probe: By whom? Family ...... Friends ...... The Imam ...... Neighbours ......
5. Do you feel your relationship with others have changed since your illness/difficulty began?Probe: Family ...... Friends ...... The imam ...... Neighbours ......
6. Can you describe the attitude of doctors and nurses towards you?
viii) Family history:1. Can your illness be passed on to others?
Probe: To family ....... Children ...... Others .......
Probe: If it can be passed on how does this happen?
2. Have others in your family had similar illness to you?Probe: Who was that?
Probe: What kind of illness did they have?
ix) Disruption to life:1. Has your illness/difficulty caused any disruption to your life?2. Has it ever affected your work?3. Have you ever lost a job because of your illness/difficulty?4. Have you ever received support to help you continue working?
Probe: What kind of support?
5. Did you find the support helpful?6. Do you care for anyone?
Probe: Who do you care for?
7. Has your illness/difficulty affected your ability to care for this person/s8. Has your illness/difficulty affected your relationships?
Prompt: Husband....... Children Parents....... Friends...........
9. In what way?
-
8/6/2019 Ban Glades Hi Population and Mental Health
38/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
38
10. Do you receive support to help care for your:
Husband/wife........ Children Parents.......... Friends..........
11. What kind of services would you like to help you care for your:
Husband/wife........ Children Parents.......... Friends...........
x) Remission:1. Since your illness/difficulty started, have there been periods when you have been well?2. What led you to feeling better?3. Have spiritual or religious blessings helped?4. What happened?5. Did anything else help you to feel better?
Probe: In what way?
xi) Health and social services1. Have you ever been admitted to hospital for your illness/difficulty?2. What happened?3. How was the treatment?4. Could the service be improved?5. Have you received support from social services?6. What kind of support?7. Did you find the support helpful?8. Could social services be improved?9. Have you received advice about benefits?10. Could you benefits advice service be improved?11. Have other services helped your recovery?
Voluntary groups/organisations Psychology Service
Psychotherapy The mosque Day Centres Leisure Activities
Other
-
8/6/2019 Ban Glades Hi Population and Mental Health
39/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
39
APPENDIX TWO
Guidance for Interviews with Users and Carers
1) The sample will be equally divided between men and women if possible.
2) Each interview will be carried out in a way that is as consistent and reproducible as possible.
3) Each interview will last no more than one hour.
4) The interview schedules will be similar for each cohort of interviewees, i.e. users and carers.
5) Interviews will be carried out in the first language of the interviewee. To achieve a consistent
sample of interviewees, priority will be given to informants whose speak Sylhetti.
6) Interviews will be recorded using a digital voice recorder.
7) Hand written notes will be taken during each interview wherever possible. These will be
taken in English.
8) The interview schedule will not be distributed to informants prior to the interview and will
not be given to informants.
9) The interview schedule will not be discussed with the informant before the interview by
either UCL project staff or by Mind staff.
10) A leaflet will be made available to informants describing the objectives of the research.
11) All interviews with informants will be normally carried out by one UCL researcher. No other
person will be in the room during the interview. Anybody arriving with informants will be
asked to wait in the Mind canteen.
12) Interviews will wherever possible be carried out in a Mind meeting room. Interviews will
only be carried out in the home of the informant in exceptional circumstances and UCL
protocols will guide staff carrying out interviews in this case.
At the interview1) Assure informant of anonymity and confidentiality of all information.
2) Explain how the informant was chosen and why it is important that you have their co-
operation.
3) If informants say that they really don't know enough to be part of your study, assure them
that their participation is crucial and that you are truly interested in what they have to say.
4) Explain to informants that you are trying to learn from them.
5) Keep interviews focused.
-
8/6/2019 Ban Glades Hi Population and Mental Health
40/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
40
6) Keep the conversation focused on the topic, while giving the informant room to define the
content of the discussion.
7) Once the informant is on the topic of interest, get out of the way. Let the informant
provide information that he or she thinks is important.
8) Every interview must be conducted professionally and should produce useful data (if
possible with notes that can be coded).
Presentation of Self1) Always be cordial, but non-judgmental, even if you hear things that you dont like. Maintain
equilibrium and move on.
2) If you feel threatened or are deeply offended by what the informant has said, stop the
interview, apologise and leave immediately.
3) Treat each interview as a unique situation and be guided by your intuition
4) How you dress and where you hold an interview tells the informant a lot about you and
what you expect.
Recording1) Always ask for permission to recordinterviews and to take notes. This is vital. If you
can't take notes and record the interview then in most cases the value of an
interview plummets.
2) If you sense some reluctance about use of the tape recorder, leave it on the table
and don't turn it on right away. Start the interview with light conversation and when
things get warmed up, say something like, "This is really interesting. I don't want to
trust my memory on something as important as this; do you mind if I record it?"
FinallyIf you are unthreatening, self-controlled, supportive, polite, and cordial, then interviewing
will come easy to you, and informants will feel comfortable responding to your questions.
-
8/6/2019 Ban Glades Hi Population and Mental Health
41/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
41
APPENDIX THREE
DELIVERING RACE EQUALITY IN MENTAL HEALTH CARE TOWER
HAMLETS
November 2007
Delivering Race Equality in Mental Healthcare in Tower Hamlets is an action plan for
improving the user experience of and ensuring equitable access to mental health services in
Tower Hamlets. The plan sets out to clearly identify the issues faced by black and minority
ethnic communities, it aims to address some of the gaps they experience in the delivery of
services, and proposes actions for the Primary Care Trust along with its partners, the Mental
Health Trust, community and voluntary organisations, the London Borough of TowerHamlets, service users and carers.
The plan has the potential to improve the care for any group affected by a disparity in
health and healthcare, including BME older people, children and adolescents, and refugees
and asylum seekers. It will take us further towards the core national standard of reduced
inequalities in health and improved access to services.
The publication draws on a number of key local and national publications including,
Delivering Race Equality in Mental Health Care, the recommendations from the Mariam
Miles Inquiry, Inside Outside, recommendations from the David Rocky Bennett Inquiry, theHealth Equity Audit carried out on the access to psychological and talking therapies by all
communities in Tower Hamlets, academic research and evidence from a range of voluntary
and statutory sector service providers.
The vision for Tower Hamlets in devising and delivering this action plan is that all
communities experience more equitable access to mental health services in a way that is
relevant to their experiences and ethnicity. We aim to use this action plan as a way to treat
the whole person taking into account their expectations and through encouraging the active
participation of service users and carers in their care planning. A new Delivering Race
Equality in Mental Health will be convened by Mr Stephen OBrien to oversee theimplementation of the action plan.
This document ultimately identifies three key objectives:
To reduce and eliminate ethnic inequalities in mental health service experience andoutcome
To develop the cultural capability of mental health services To engage the community and promote an increased understanding around mental
health and options for care and treatment, and improve mental well being in
individuals and communities
-
8/6/2019 Ban Glades Hi Population and Mental Health
42/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
42
Implementing the wider BME mental health programme is a task for the whole health and
social care system. The independent sector already has a vital and leading role in providing
culturally capable services to BME communities, and will be an invaluable source of
experience and expertise for the statutory sector to draw on as it tackles inequalities in carein a systematic and joined up way.
We have made every attempt to embed the principles outlined above in the Action plan.
They attempt to capture the development of appropriate and responsive services; the
engagement of BME service providers and communities; the strategic development of clear
targets with a focus on delivery and an existing performance management structure to
begin the mainstreaming of race equality practice in mental health.
1. Therapeutic Options and Choice
Improving access to psychological and talking therapies through additional capacity to
reduce waiting times, increased bilingual practitioners and ensuring that all therapists
understand what it means to provide culturally sensitive services.
Action
Targeted and intensive work with GP's and primary care services to increase referralsto psychological and talking therapy services in primary care and voluntary sector
Review provision of Bi-Lingual Therapy
Analyse bilingual therapy provision and agree workforce strategy
2. Interpreting and Translation
Ensure all services provide assessment either in the service users own language or that a
suitably qualified interpreter is available.
Action
Work with ELCMHT to assess the language needs of mental health service users anddevelop a strategy to address shortcomings.
Ensure that all service users have access to suitably qualified and trainedinterpreters.
All service users under ELFT to have assessments in preferred language or withsuitably trained interpreter (excepting in A & E).
Move towards all mental health assessments in primary care and voluntary sector inclients preferred language or with suitably qualified interpreter.
-
8/6/2019 Ban Glades Hi Population and Mental Health
43/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
43
3. Advocacy Services
Ensure all service users have access to a service that advocates on behalf of their needs
ensuring they are kept well informed and involved in all processes of decision making.
Action
Support development of comprehensive and joined up advocacy services, ensuringthey form a part of referral systems of all mental health services delivered in Tower
Hamlets
Review mental health specific advocacy services across Tower Hamlets Ensure patients know about and have access to advocacy services.
4. Staff and Cultural Capability
Every member of staff in primary and secondary mental health services to undergo wide
reaching mental health and race and cultural capability training.
Action
Race Equality and Cultural Capability training materials delivered to all mental healthprofessionals in Tower Hamlets including clinicians.
Develop clear and well-resourced pathway for increased recruitment anddevelopment of bi-lingual practitioners.
Deliver Race Equality and Cultural Capability training to ELHT staff. Develop cultural consultation service for clinicians requiring support in working with
BME clients.
5. Clinical Practice
Develop clinical practices that facilitate choice and support service users to better
understand and be involved in treatment options.
Audit prescribing of anti-depressants, anti-psychotics, and restrictive and coercive
treatment across primary and secondary care, developing action plans based on the results
to reduce inequality.
Action
Plans developed and agreed by ELHT to carry out a Race Study analyzing the prescribing
practice of Trust clinicians.
-
8/6/2019 Ban Glades Hi Population and Mental Health
44/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
44
6. Ethnic Monitoring
Collect and analyse monitoring data across community and inpatient services
Action
Collect and analyse ethnic monitoring data across all community based mentalhealth services.
Collect and analyse ethnic monitoring data across all hospital settings. Publish yearly analysis of monitoring information across all mental health services.
7. Community Engagement
Raise awareness of mental health/empowerment communities to support people with
mental health problems.
Action
Develop a comprehensive Community Development Strategy to address the specific roles of
three Community Development Workers in relation to raising awareness of mental health:
Celebrating Culture and Diversity in Mental Healthcare Connecting communities. Developing Mental Health Ambassadors with association with colleges and schools. Working with religious leaders and formal and informal networks
Empowering communities:
Working with older adults to raise awareness about mental health. Working with other voluntary and community organizations to develop awareness of
mental health and sign post.
Working with volunteers to tackle stigma and within own communities. Working with parents to better understand mental health issues and tackle
associated stigma.
8. Mental Health Promotion
To reduce the stigma and isolation associated with mental health by supporting
communities to better understand mental health issues and the support available to them.
Action
Health Improvement Programmes developed by an alliance of key organisations toidentify local needs
Support better collation and dissemination of information to aid betterunderstanding across all sectors/groups/providers of service provision, access
criteria, pathways etc
-
8/6/2019 Ban Glades Hi Population and Mental Health
45/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
45
Tower Hamlets Mental Health Promotion Strategy currently being developedthrough the Adult Mental Health Partnership Board.
Improve the understanding of cultural perspectives of mental health Reduce stigma and discrimination associated with BME communities
9. Race Equality Action Plans
Develop support services strategy to explore the mental health needs of local BME
communities and develop effective action plans to tackle their needs.
Action
Every service area will have an action plan that sets out the process of:" Assessment of need
" Analysis of access
" Analysis of the service user pathways
" Action plan to address the gaps and shortcomings.
Each service to develop a race equality action plan to address issues relevant to BMEservice users.
Each service to review actions from plans and assess impact.
10. Tower Hamlets race equality documents
Mental Health Strategy User Involvement Strategy Dual Diagnosis Strategy Independent enquiry into the care and treatment of MM Independent enquiry into the care and treatment of SSW Mental health needs assessment draft Health equity audit, BME access to talking therapies draft
-
8/6/2019 Ban Glades Hi Population and Mental Health
46/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
46
APPENDIX FOUR
-
8/6/2019 Ban Glades Hi Population and Mental Health
47/47
East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences
APPENDIX FIVE
Bangladeshi Mental Health Forum consultation
The Bangladeshi Mental Health Forum is holding a consultation meeting on community
needs and service gaps for mental health service users and carers later this month.
If you are involved in supporting someone with mental health problems or you want to get
your voice heard about mental health service provision, please come along and have your
say.
Where and when
The meeting will be held on Tuesday 23 November 2010, from 10am-1pm, in room 2,
Aneurin Bevan House, 81 Commercial Road, London, E1 1RD. It is being led by Alistair
Campbell (Queen Mary, University of London), researcher and community artist.
A light lunch will be provided.
Further information
For more information and to book your place, please contact Syeda on 07546 862 280 or
email [email protected].
Published: 02 November 2010