Ban Glades Hi Population and Mental Health

8/6/2019 Ban Glades Hi Population and Mental Health

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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


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East London Bangladeshis and Mental Health: UCL Department of Mental Health Sciences

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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


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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.


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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


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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


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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.


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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


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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'.


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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.


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"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:


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"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'.


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"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.


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"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.


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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.


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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.


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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.


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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.


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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.


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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.


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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.


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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.


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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.


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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.


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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).


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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.


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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.


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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


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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


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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


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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


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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


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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


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


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


Mind Tower Hamlets and Newham http://www.mithn.org.uk

13 Whitethorn Street, E3 4DA

Telephone: 020 7510 1081

Fax Number: 020 7537 7944


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


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


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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



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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 ... ... ... ... ... ... ... ...


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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 .......


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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?


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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?


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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


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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.


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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.


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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


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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.


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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.


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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


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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


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APPENDIX FOUR


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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

Ban Glades Hi Population and Mental Health

Documents

Transcript of Ban Glades Hi Population and Mental Health