c

Contents

03Acknowledgements

04Introduction and Background

05 Methodology

06 An Overview of Storytellers

16Storyteller A - How Education and Day Services helped my recovery

17 Storyteller B - My Work; My road to recovery

18 Storyteller C - Alcohol, Faith and Health

19 Storyteller D - Thinking positive and looking ahead

20 Storyteller E –Recovery; My space; My time

21 Storyteller F – Next step to recovery

22 Storyteller G - Counselling helped towards my recovery

23 Storyteller H - Life saved and admitted to mental health ward

24 Storyteller I - My Children; My survival

25 Storyteller J - Prevention is better than cure

26 Storyteller K - My Faith; My way forward

27 Storyteller L - Going from one Section to another

28 Storyteller M –My nurse, sympathetic and caring

29 Storyteller N –If only ‘they’ listened

30Key Thematic Analysis

33Conclusion

34Recommendations

Appendices

35Work plan

36 Toolkit

37 Sample full story

Acknowledgements

I wish to thank the following people for their support and contribution to this storytelling project:

Caroline Bamford, Head of Diversity and Inclusion,Leeds and York Partnership Foundation Trust for supporting and paving the way for this important project.

Ruby Sagoo, Strategy and Inclusion Manager, Leeds and York Partnership Foundation Trust for sharing her skills, knowledge and expertise on the ethics of storytelling.

Positive Action For Refugees and Asylum Seekers (PAFRAS) staff and volunteers for providing expertise and knowledge on the area of capturing service users lived experiences.

Colleagues from Touchstone includingJon Beech, Stephanie Lewis and the Community Development Team for recording stories, encouraging and assisting me and contributing to ensuring we asked the best questions to obtain the best honest results.

A big thank you to Oliver Wyatt Clinical Team Manager (CTM) on ward 4 Becklin Centre for facilitating and supporting this important work.

Last, but by no means least, a huge appreciation to all the participants for sharing their stories and making a huge contribution to ensuring how mental health services can be improved for BME service users.

Hafizur Hussain

Touchstone

Community Development Worker

Introduction

Mental Health services have been concerned about the unequal treatment and recovery of people from Black and Minority Ethnic (BME) backgrounds for a long time. Research shows significant evidence of high detention rates, over-representation and other disadvantages for BME people. The cause and effect of these inequalities are well documented and well known.

This report describes the experiences of fourteen people from BMEbackgrounds and their journeys through mental health services. Each of them had accessed at least two mental health services, and the selection was made to represent use of primary, secondary and tertiary care, as well as third sector services[1].

This report attempts to identify trends and themes in the stories told by BME service users in order to highlight key learning points.

By enabling people to tell their own stories in their own way, we hope that the service providers and staff who have helped them can gain a deeper understanding of their struggles, and consider how to help them better in future. We also hope to reveal positive, hopeful stories – allowing people to explain the experiences that made the difference to them.

Harnessing the experiences of BME service users through narratives can be very powerful. By capturing their insights and experiences of mental health care and support in their own words, it allows us to work out what works, what gets in the way, and what we can all do to make recovery and treatment better for everyone.

This report builds on the previous work of Leeds and York Partnership Foundation Trust (LYPFT), their annual quantitative report titled Minimum Mental Health Data Set(MMHDS)[2], and the report published in June 2012 by Tracy Grey which described BME Pathways from a professional/staff perspective[3].

Background

Leeds is a fast developing and ethnically diverse city. According to the 2011 Census[4] approximately 1 in 5 people are now from a BME background in Leeds (18.9%) compared to the last census in 2001 (10.8%).The number of residents born outside the UK has also increased from 47,636 to 86,144. The Pakistani community is the "single" largest BME community in Leeds with just under 22,500 people. 4.5% of households in Leeds had no residents who spoke English as a main language. At the current rate of growth, by 2021 about 1 in 3 people in Leedswill be from a BME background.

Methodology

A toolkit was devised, outlining:

  • The aims and objectives of the storytelling project
  • How it will be undertaken
  • Who it will involve
  • Benefits and disadvantages to participants and
  • Ethical considerations[5]

A comprehensive project framework was essential to ensure reliability and effective project management.

The purpose of this storytellingproject is not an ‘investigation’ into what went wrong, rather it provides an opportunity to improve positive outcomes for service users and boost their confidence. It also provides a story that is both useful and helps us to connect to people who will deliver oruse the services shapedby it, promoting a better understanding of the cultural differences in access, take up and use of mental health services overall.

The next stage involved drafting a set of standard questions to ensurewe asked the same things in the same way, to allow stories to be compared with one another. Establishing our main areas of interest in advance was very important and helped to deal with a wide variety of experiences and stories. For example, we wanted to know from everyone whether their experiences were positive or negative; their understanding of medicine, treatments and assessment procedures.

At this stage, the project also gained valuable information and support from PAFRAS staff and volunteers who had recently undertaken similar work around patient journeys.

The Community Development Workers (CDWs)identified Mental Health Units with high levels of BME service users, and contacts made to enable the storytelling phase to begin.

CDWs worked alongside volunteers, community organisations and ward staff to identify patients interested in telling their stories. Informed consent was obtained from interested service users and subsequently events were organised at appropriate and safe venues to capture and record participants’ stories.

One of the storytellers spoke very little English, and an interpreter was used to capture and transcribe their story.

The next task was to transcribe what was shared by the storytellers. The advantages of recording conversations became evident through the process of the transcription. Information that may have been overlooked in the process of note-taking was identified and themes that may not have been recognised initially were able to be recorded. The transcribing process was extremely time consuming but highlighted once again the depth and richness of the stories collected.

An Overview of Storytellers

The 14 participants selected came from a wide variety of ethnic and cultural backgrounds and ranged in age from 18-55 years.

The project aimed to reflect a gender balance as much as possible. Each participant was given a diversity monitoring form requesting personal data.

  • 8 male, 6 female = 14
  • Inpatient 3 female, 2 male =5
  • In the community 6 male, 3 female = 9

Participants were encouraged to define their own identities rather than select from pre-determined categories, such as those in the census or ethnic monitoring forms.

  • The largest ethnic group recorded was stated to be African (4) followed by Black British (2), Bangladeshi(1), Pakistani (1) African Caribbean (1) British Caribbean (1) Indian (1) Palestinian/Lebanese (1) Arabic (1) Pakistani/ Kashmiri (1)
  • Some participants reported that they were not clear about what was meant by the term “ethnicity”.

  • Just over half of all participants were born in the UK (8)
  • 6 participants had come to the UK for different reasons mainly to study or to join family.

  • 3 participants were in full or part time work prior to accessing services.
  • Over half of all participants were unemployed prior to accessing services (8)
  • 3 participants were in education prior to accessing services.

  • Just over half the participants had children, 5 had no children

and 1 participant preferred not to say.

  • Most participants said that they had a religious belief:6 participants stated Christian, 5 stated Muslim, 1 said Sikh and

2 preferred not to say.

  • More than half of all participants reported depression (8) with a significant number reportingdepression with another diagnosis, (5) and 3 participants with a singular diagnosis of depression.
  • 1 participant was unhappy with their second diagnosis and therefore felt uncomfortable with it being recorded.
  • 2 participants reported that they were anxious and depressed.
  • A quarter of all participants (4) indicated that they had Schizophrenia with 2 having another diagnosis.
  • Delusional disorder was mentioned by one participant.
  • 1 participant had Bipolar with another diagnosis.
  • 5 participants had Psychosis with 3 having another diagnosis and
  • 2 participants had a singular diagnosis of psychosis.
  • 1 participant was diagnosed with post traumatic stress disorder with another diagnosis.
  • A quarter of the participants (4) reported using mental services for over 5 years.
  • 3 participants hadused mental health services for more than 10 years.
  • 3 participants had first accessed mental health services 3 years ago.
  • Just over 2 years (2)
  • Less than a year (2)
  • All participants (14) were accessing mental health services in Leeds.
  • However, 2 participants had received care and intervention in Preston and Oxford respectively before taking residency in Leeds.
  • More than half of the participants had been referred to mental health services by their GP (9).
  • The numbers do not tally as some participants had been out in the community, and were then referred back into hospital by their psychiatrist or others that were involved in their care.

A variety of treatments were described by inpatients, from various medications right through to talking treatments.Talking therapies was a popular method of treatment, when combined with prescribed medication.

  • Out of the 3 participants that were employed either full or part time 2 participants spoke clearly about the stigma and discrimination encountered at work.
  • 1 participant reported feeling isolated at work and immediately given low level tasks and felt the company was progressing other colleagues with less experience: “the whole episode affected my job, when the sick note came from the hospital, I lost my career”.
  • 1 participant reported their manager making fun of them upon receiving their sick note. They then reported being redeployed and never regained their previous position. “I was treated with kids gloves, and not allowed to deal with patients”.
  • 1 participant was discriminated by their work place and the police.
  • 5 participants encountered no stigma or discrimination.
  • Of the 9 people reporting stigma or discrimination only6had challenged their treatmentand 3 described doing nothing - either because they were not well enough, or because theydid not have the confidenceor the energy.
  • The 2 participants who spoke about discrimination at workboth said they addressed the issue with their manager. Unfortunately both described this as making no difference.
  • 2 participants spoke to nursing staff with one using an interpreter to address concerns and issues.
  • 1 participant addressed the issue with their family.
  • 1 participant responded by returning to their studies.
  • 5 participants who shared their stories were still inpatients.
  • 1 was progressing to the rehabilitation and recovery unit.
  • 3 will be discharged in the next few weeks.
  • 1 participant had not been informed and was not sure of a discharge date.
  • At the time of writing this report 6 participants were receiving some form of care in the community.
  • 5 were still an inpatient on mental health wards.
  • 3 were discharged and not receiving any services.

Individual recommendations made by all 14 participants can be found in the tables below (p16-29).

The recommendations shared by the participants have been used to identify key themes as outlined from (p30-33).

A sample full story has been included in this report[6], all stories can be made available on request.

1

Storyteller A – How Education and Day Service helped my recovery

African male 20's with Anxiety and Depression, story told in the community

Where are they now? / What services did they access where? / How did they enter services? / What happened that was helpful / What happened that wasn’t helpful / Individual Recommendations
Community / Came into the UK form Africa in 2004, diagnosed with illness in 2005 / Self referred to GP was prescribed medication. GP referred to Psychiatrist / Seeing a Psychiatrist / No emotional or social support received - felt it was just about medication
St Mary’s Hospital / Referral made by Psychiatrist / Being on medication / Have staff in hospitals from BME communities
Touchstone Support Centre / Referred by GP
Allocated a key worker / Started college after receiving information on educational courses
Getting a grant to buy a computer to access internet and look for work/ volunteering opportunities
Being on medication coupled with engaging in various group activities met emotional and social needs
Having staff from BME communities enabled staff to be culturally sensitive toward needs
Having a view and being able to share his story left him feeling confident / Informed about Touchstone services by GP 2/3 years later / Greater understanding of different cultures among
mental health (MH) staff to reduce discrimination
Leeds / Escorted by police / Felt discriminated against by the Police who thought he was on drugs although has never taken drugs in his life. Sensed this could be due to having limited English and Police not understanding mental illness / Training of professionals such as police to understand MH
More publicity around MH awareness

Storyteller B – My Work; My Road to Recovery

Indian male late 30’s with Severe Depression, story told in the community

Where are they now? / What services did they access& where? / How did they enter services? / What happened that was helpful / What happened that wasn’t helpful / Individual Recommendations
Community- working part time / Family history of Depression
Becklin Centre / Referral made by GP Strong family/friends network / Early intervention by GP
Flexible visiting times allowing family members to be present in review meetings
Taking part in activities and making use of the gym facilities
Talking with Occupational Therapist (OT) / Felt like a ‘zombie’ being on medication
Stopped working due to ill health / Less medication more alternative therapies
Local Community Centre / Introduced to community services by family friend / Activity organiser very proactive, consulted group prior to planning a series of activities/ sessions
Religious and cultural needs of individuals were taken into consideration e.g. avoiding activities during religious celebration/festivities
Wherever possible removing barriers
Regaining own confidence
Encouraged by friend to meet employer who offered part time job
Employer offered flexibility to working hours / Wider community not understanding MH / More MH awareness in the community

Storyteller C – Alcohol, Faith and Health

African female in 50’s with Depression and Delusional Disorder, story toldin the community

Where are they now? / What services did they access& where? / How did they enter services? / What happened that was helpful / What happened that wasn’t helpful / Individual Recommendations
Community / Came from Zimbabwe 12 years ago
Becklin Centre / Not known / Information and advice was given on alcohol and drugs bypsychiatrist / Felt pressurised by lady from church to pray who visited hospital 3 times / More empathy from professionals e.g. Doctor
Staff to have more understanding of different cultures
Christian Against Poverty / Not known / Started living slowly by going to church and not thinking about alcohol,
Providing financial assistance and advising on debt reducing stress and improving budgeting skills / Lady from church very persistent / “I don’t like the word Mental Health its depressing it’s like saying there’s no help”
Staff to explain medication and “not just give leaflets”
Skyline / Self referral, information on skyline services was given by someone known in the community / Receiving information on HIV and other drugs
Reminding of health appointments
Assistance with buying things for the home
Access to computer improved computer skills and willingness to learn further skills Allocated key worker / Does not mention to friends about having HIV, ‘it’s so secretive and it’s just like your dirty’
Touchstone Support Centre / Referred by Becklin Centre / Having somewhere to go enabled to get out of bed
Empowered by support worker to strive and accompanied to meetings and appointments / Watching TV and looking at each other, very slow and quiet / Touchstone Women’s group to offer more interesting activities
CPN / CPN on the ball doesn’t leave things too late. Does what she says and makes sure I am ok

Storyteller D – Thinking positive and looking ahead

African Caribbean male late 20’s with Bipolar and Psychosis, story toldin the community

Where are they now? / What services did they access& where? / How did they enter services? / What happened that was helpful / What happened that wasn’t helpful / Individual Recommendations
Community / Adolescent MH services (2002) / Family noticing change in behaviour, initially seen by GP who prescribed anti-depressants / Felt like in the right place with caring professionals
Enjoyed therapeutic activities such as Tai-Chi, art work, day trips
Received schooling so did not miss out on education / Did not continue with studies due to becoming unwell
Moved to Leeds which proved difficult to adapt and start again
Becklin Centre / Received support from extended family who visited in hospital / Part of relapse was being seen by a common doctor other than usual psychiatrist who stopped medication but did not monitor or put a proper care plan in place
Staff did not seemed like they cared and were not right for the jobs / More therapeutic activities on ward
Fear of going back to hospital due to treatment received
Touchstone Support Centre
Community Alternative Team
Community Links / Information was given by various people mainly staff at Becklin Centre / Encouragement from support workers to engage in social activities
Volunteering has taught new skills and now applying for jobs
Opportunity to mix with other service users who have similar things in common / Looking for a job and wanting to go back into education / More service user lead forums/groups
Applying for jobs not getting shortlisted
“There was an interview I went on and when I told them about my mental health issue I think that went against me in that interview.” / More training and preparation for people wanting to get back into work
Training for employers to change attitudes towards MH

Storyteller E – Recovery; My space; My time