16 Storyteller a - How Education and Day Services Helped My Recovery

Real Lives

BME Storytelling Project

Final Report

BME service user pathways through mental health services.

Monitoring and evaluating effectiveness of service delivery, especially around the equality needs of BME service users. Contents

Hafizur 03Hussain— Acknowledgements Touchstone Community Development Worker— January 2013

04 Introduction and Background

05 Methodology

06 An Overview of Storytellers

16 Storyteller 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

30 Key Thematic Analysis

33 Conclusion

34 Recommendations

Appendices

35 Work plan

36 Toolkit

37 Sample full story

2 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 including Jon 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

3 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 BME backgrounds and their journeys through mental health services. Each of them had accessed at least two mental health services, and the selection was

4 made to represent use of primary, secondary and tertiary care, as well as third sector services1.

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 perspective3.

Background

Leeds is a fast developing and ethnically diverse city. According to the 2011 Census4 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 Leeds will 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 considerations5

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

1 Can be found at Appendix 1, p35 2LYPFT NHS Foundation Trust; Annual Mental Health Minimum Data Set (MHMDS) 2009/10 Analysis. 3NHS Enhancing Care Pathways for BME Service Users in Leeds mental health provisions, Tracy Grey. 4Leeds – The Big Picture A summary of the results of the 2011 census, Leeds City Council.

5 The purpose of this storytelling project 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 or use the services shaped by 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 ensure we 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.

5 Can be found at Appendix 2, p36

6 atcpn a ie iest oioig fr eusig personal requesting form monitoring diversity data. a given was participant Each possible. as much as balance gender a reflect to aimed project The select from pre-determined categories, such as those in the census or census the in those as ethnicmonitoring forms. such than categories, rather pre-determined identities from own select their define to encouraged were Participants

  No. of Participants    0 1 2 3 4 5 oe priiat eotd ht hy ee o ceraot what about clear not were meant wasby “ethnicity”. the term they that reported participants Some (1) (1) Kashmiri (1) Arabic Pakistani/ (4) Palestinian/Lebanese African (1) Indian (1) Caribbean British (1) Caribbean be African (1) to Pakistani Bangladeshi(1), stated (2), British Black was by followed recorded group ethnic largest The male,femaleIn 9 6 3 = the community Inpatientmale3 2 =5 female, 148 6 = male, female

Bangladeshi 0 2 4 6 8

Pakistani

Pakistani/Kashmiri Male

Afro-Carribean Ethnicity Gender Ethnicity

African Gender

British Carribean

Black British Female

Indian

Palestinian/ Lebanese

Arabic 7 Birth

s 6 t n

a 5 p i 4 c i t

P 2 1 0 Born in the UK Came in to the UK

Birth Where Born

 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.

Employment

9 8 7 s t

p 5 i c

i 4 t r

a 3 P 2 1 0 Was working prior to Was unemployed Was in education coming into services prior to coming into prior to cominginto services services

Employed

 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.

8 Children

8 7 s t

n 6 a p i

c 5 i t r

o 2 N 1 0 Has children No children Did not say

 Just over half the participants had children, 5 had no children and 1 participant preferred not to say.

Religion

7 s t 6 n a

p 5 i c i

o 1 N 0 Christian Muslim Sikh Did Not Say

Religion

. 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.

9 What is your Condition?

0 s s n c a n n a i i & & & i i i s & & t i o o o s s s

i i i n n i e t n n n r a a s n r o i o y s s s e e s s o t o o a o o r r i i i e l h o h s s i s m o o e h h h i s s s v o c n c e e s e u h c r P p r r p x s s s e p y a y u a c i l r y p o p p o n e e r e s s S y e r r r B a s e z e e z T A i i P P s p p p D P P D D D h h

e P e e c c & D D D S S Condition

 More than half of all participants reported depression (8) with a significant number reporting depression 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.

10 First Entered Mental Health Services

t 4 n a p i

c 3 i t r a P

0 + + + + + + 1 r s

s r s s s s s a r n 0 r r r r a e e a a 1 a a a a e y L e h e e e e y t y

y y y y

1 8 5 3 2 Entered Mental Health Services

 A quarter of the participants (4) reported using mental services for over 5 years.  3 participants had used 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)

Where did you access Mental Health Services?

14 s t 12 n a

p 10 i c i

t 8 r a 6 P

o 2 N 0 Leeds Preston (& Leeds) Oxford (& Leeds) Location

 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.

11 Who referred you to Mental Health Services? s

t 10 n a 8 p i c i

t 6 r a

N 0 l t t r y l y c a s i r n t d P e r t i i a r i r i r a e t k o n t t p G e a t c r c a u a i n s s c i o o s w r h u

o e h l e m S u l c W c o S H H o y m N y V d s M o s A P C P Referred by

 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.

What Helped in your Journey to Recovery? 5

4 s t n a p

i 3 c i t r a P

. o N 1

0 n s e h i e e c g n n s d i r t

g i r d i t s n o o e s a s i i i g n a r a e n a u t t i r c e u n i p u e g C i i e a c a F e C i

t t n /

v i o r a i r p c u c d r y t i i a h y v c u o F a r i d t a r e k n d d i

c / t r i g r a e e a e s o e e a l y y c e n l n

o r i g d R m a F h C u a i M m S a l e n w r t l m T l V o m n a n P o c C u m F l w C e o o o S C V

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.

12 Have you ever encountered Stigma or Discrimination? s

a 5 p i c

i 4 t r

e y e o s s l t y t c i l l c i i N a n l a n a l n e o u m n h p o t p i l a o k m

i m r t s a F h y o a s e m s B i c e l o w H f

u b o C e d a r t h E t P s

 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.

13 How did you challenge the Stigma or Discrimination?

s 4 t n a

p 3 i c i t r

N 0 Spoke to Talked to Spoke to Changed jobs Did Nothing family Nursing Staff Manager at work Action

 Of the 9 people reporting stigma or discrimination only 6 had challenged their treatment and 3 described doing nothing - either because they were not well enough, or because they did not have the confidence or the energy.  The 2 participants who spoke about discrimination at work both 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.

14 When were you discharged from Mental Health Services?

6 s t 5 n a p i 4 c i t r

. o 1 N 0 5 years + 2 years + 1 year + Less than a Not year Discharged/ Inpatient When Discharged

 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.

Where are you now?

s 6 t n

a 5 p i c i

t 4 r a

N 1 0 Still in community care Inpatient No care after discharge Current Stage

 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.

15 How would you improve Mental Health Services?

16 14 s t

n 12 a p i 10 c i t r

N 4 2 0 l t r t a d c d g s a s e n i t r

t s n n s n s s f d s e n s i t o f l u e a a e h s f c i e e e n n i t U a e t i e l r m l n i e

t r e n e d e v t r a p a i o p M a e v e s n r t r r

i e n e r n d a t o t t e l c a l a u r e M i

a a e d h f t E l c s r t c e l l i H p f e v i a A o w C r v u a L a h M a t t f e e A c M B S d S Recom m endations

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 report6, all stories can be made available on request.

6 Can be found at Appendix 3, p37

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

17 Storyteller B – My Work; My Road to Recovery Indian male late 30’s with Severe Depression, story told in the community

Where are What How did What happened that was helpful What happened that Individual they now? services they enter wasn’t helpful Recommend did they services? ations access & where? Community- Family Referral Early intervention by GP Felt like a ‘zombie’ being on Less working part history of made by GP Flexible visiting times allowing family medication medication time Depression Strong members to be present in review meetings more family/friends Taking part in activities and making use of alternative Becklin network the gym facilities Stopped working due to ill therapies Centre Talking with Occupational Therapist (OT) health

Local Introduced to Activity organiser very proactive, consulted Wider community not More MH Community community group prior to planning a series of understanding MH awareness in Centre services by activities/ sessions the community family friend 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

18 Storyteller C – Alcohol, Faith and Health African female in 50’s with Depression and Delusional Disorder, story told in the community

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

CPN CPN on the ball doesn’t leave things too late. Does what she says and makes sure I am ok 19 Storyteller D – Thinking positive and looking ahead African Caribbean male late 20’s with Bipolar and Psychosis, story told in the community

Where are What How did What happened that What happened that wasn’t Individual they now? services they enter was helpful helpful Recommendatio did they services? ns access & where? Community Adolescent Family noticing Felt like in the right place Did not continue with studies due to MH services change in with caring professionals becoming unwell (2002) behaviour, Enjoyed therapeutic activities Moved to Leeds which proved difficult initially seen by such as Tai-Chi, art work, to adapt and start again GP who day trips prescribed Received schooling so did not anti- miss out on education depressants Becklin Received support from Part of relapse was being seen by a More therapeutic Centre extended family who visited common doctor other than usual activities on ward in hospital psychiatrist who stopped medication but did not monitor or put a proper Fear of going back care plan in place to hospital due to Staff did not seemed like they cared treatment received and were not right for the jobs Touchstone Information Encouragement from support Looking for a job and wanting to go More service user Support was given by workers to engage in social back into education lead forums/groups Centre various people activities mainly staff at Volunteering has taught new Community Becklin Centre skills and now applying for Alternative jobs Team Opportunity to mix with other service users who have Community similar things in common Links Applying for jobs not getting More training and shortlisted preparation for “There was an interview I went on people wanting to and when I told them about my get back into work mental health issue I think that went Training for against me in that interview.” employers to change attitudes towards MH 20 Storyteller E – Recovery; My space; My time Palestinian/Lebanese male in 30s with Depression, story told in hospital

Where are What How did What happened that What happened that wasn’t Individual they now? services they enter was helpful helpful Recommendations did they services? access & where? Hospital Becklin Mum rung MH Complying with doctors and Does not understand why in MH The need for less Centre services, after engaging with support being unit, when he believes he has a strenuous exercises. (2008) assessment offered physical condition not mental 2nd admission was admitted Did not have a advocate Provide a wider choice (2010) on the food menu

Newsam Medication not Getting fresh air, going to Confused about what is being said Need own space and Centre helping and town, making own lunch, about having something wrong with time out (2012) has not been spending time with mum but memory , reduced in the all accompanied More advocacy last four years Nothing to do always bored, Services on the Wards Looking forward to seeing “activities displayed on the board psychologist in 2/3weeks are not what they seem” Service Users should be made aware when Regular intervention with OT Staff not always available to assist media equipment is to discuss management of and busy when approached available chronic fatigue “ not respecting your word when Service users need to Aware of services that can be you’re telling them you’re tired” be advised if activities accessed when in hospital are cancelled and Not being involved in own care and there should be a decision making back up activity in place Not having access to benefit information Staff should listen to patients

Regularly update PARIS

21 Storyteller F – Next step to recovery African male late 30’s with Post Traumatic Stress Disorder and Schizophrenia, story told in hospital

Where are What How did What happened that What happened that wasn’t Individual they now? services they enter was helpful helpful Recommendations did they services? access & where? Hospital Had Referred by GP Health has improved through Been in hospital 4 years Would be helpful to flashbacks effective use of various have more staff on from being in medication now preparing to Care plan in place, no dates given the ward who speak Prison, family move to recovery and for discharge “they don’t tell me” Tigrinya abroad rehabilitation Newsam Been given permission to walk When discharged from Centre Speaking to staff in mother around the hospital hospital, follow up (2008- 2012) tongue reduced isolation service users at home Not sure if needs are being assessed so they don’t have to Interpreter available and for when going home come back to hospital accessed when needed until completely Wants to go church and learn treated Allowing family members to English when out of hospital, attend appointments nothing in hospital. More educational activities such as Talking to CDW classes

22 Storyteller G – Counselling helped towards my recovery British Caribbean female mid 50’s with Depression, story told in the community

Where are Where How did What happened that What happened that Individual they now? were they enter was helpful wasn’t helpful Recommendations they/what services services and? did they access? Community Community Referred by GP Good rapport with GP was Discriminated at work by line Alternative treatment to (working Asked for help empathetic and visited at manager medication part time) from the GP home “medication can make who then Was not able to resume old you feel old” arranged for position help Went off sick then later redeployed Psychiatrist Referred made Put me on medication Initially put on medication then Need positive by GP with regular reviews came off people/professional Had 1-2-1 counselling for 1 around year Support Worker need to Empowered by Psychiatrist to be connected to service fight for self users: “it’s just a job to them” Went to church and spoke to pastor

Counselling Referred by Encouraged to attend groups Community services to services Psychiatrist at St Mary’s House offer more group activities and Making the choice to be bereavement counselling stronger in own faith More information and Refused to be prescribed any publicity around MH more medication especially through GPs

Having good quality friends More talking therapies to speed recovery

23 Storyteller H – Life saved and admitted to MH ward Black African Male aged 29-40 with Schizophrenia and Psychosis, story told in the community

Where are Where How did What happened that What happened that Individual they now? were they enter was helpful wasn’t helpful Recommendations they/what services? services did they access? Community Came to the No services No family support People need to be more UK in1997 to accessed in aware of mental illness study native country “hospital isn’t a nice place’ being especially psychosis due to MH locked up doesn’t help’ being a taboo. Listen to what service Received MH Ambulance Life saved and admitted to Being given a diagnosis without users want care in called by a MH ward any explanation of possible Preston friend after causes of illness attempting Friends were supportive but suicide did not understand much Felt discriminated against by the about MH University was told a health check would be needed to continue with course Hospital Police and Under pressure when on Need more space and social services cigarette break to finish and get freedom on wards came to the back in, not helpful for recovery house and was Does not help when there are sectioned frequent change in medication and trying new medication Aspire Staff explaining the illness Presented with anxiety which led Hospitals and outside and supporting with the to staff being concerned organisations need to management of psychosis Voluntary sector staff then work together and listen “Helped bridge the gap arranged for help which resulted to service users between the way I am and in re-admission the real world” Undertaking drama therapy Supported with housing and resettlement Psychiatrist Frequent change in medication

24 Storyteller I – My children; My survival Pakistani Male mid 30’s with Anxiety and Depression, story told in the community

Where are Where How did What happened that What happened that wasn’t Individual they now? were they enter was helpful helpful Recommendations they/what services? services did they access? Community Came to the Referred by GP Early intervention by GP UK in 1991

St Mary’s Being picked up to go to Seen by different Psychiatrist and Need to be seen by Hospital hospital every day in the trainees the same specialist morning and dropped off in Psychiatrist all the the evening at home Changing medication time and not be sent to trainees. Given medication and “It’s like they are just testing monitored at same time medication on me”

Seen by a specialist Psychiatrist Touchstone Referred by Getting back in the Hospital staff community and preparing for work

Socialising and meeting new people with similar experiences Together Support worker Accessing these specialised “Unfortunately Together has now Project services that are crucial for closed down” recovery

25 Storyteller J – Prevention is better than cure Black British Female aged 41-59 with Schizophrenia, story told in hospital

Where are What How did What happened that What happened that wasn’t Individual they now? services they enter was helpful helpful Recommendations did they services? access & where? Hospital GP Self referral Prescribed medication that GP not diagnosing illness earlier GP to listen and worked for a while explore signs and symptoms which can Was on the same medication for make a earlier along time without any changes to diagnostic of illness dosage Medication to be monitored or changed when needed to ensure its effectiveness Becklin Family noticed Having 4 hours day release Have a good appetite and would Centre change and everyday promotes prefer more choices on the food Group Therapy (2012) encouraged to independence and freedom menu self refer Key worker provides information about services in “Medication makes me feel drowsy the community and sluggish all the time which When well gets involved with stops me from doing things” the various activities on the ward St Mary’s Suggested by Lots of encouragement from Hospital key worker staff to try out different activities e.g. healthy cooking sessions, watching movies Having access to a computer and improve skills. “It is good to be around people who have already something in common, what you call it… peer support / group therapy, group things.” 26 Storyteller K – My faith, my way forward Arabic Female aged 41-59 with Psychosis, story told in hospital

Where are Where How did What happened that What happened that wasn’t Individual they now? were they enter was helpful helpful Recommendations they/what services? services did they access? Hospital Becklin Spoke to child’s “Reading the Quraan” and Praying in the bedroom when Ensuring on admission Centre teacher who learning about faith has been facilities are available due to not service users are (2012) arranged help significant to recovery being informed sooner of the multi informed of faith room services/facilities Referral made “Being in here has given me beneficial/available to by Social time to reflect and find my Missing out on the opportunity to them that meet their Worker & inner self, it’s not always a meet other people of the same faith religious and cultural Doctor bad thing being in hospital” needs Halal option wasn’t given preferred Talking with and being a vegetarian meal though not many More option on the listened to by another Muslim choices available food menu for people women (CDW) increased who are vegetarian confidence More therapeutic Wide range of activities to activities other than engage with, encourages medication conversation and increases interaction with others when feeling bored

“Different therapies like just talking helps other than medication helps”

27 Storyteller L – Going from one Section to another Black British Female aged 41-59 years with Psychosis, story told in hospital

Where are they Where were How did they What happened What happened Individual now? they/what enter services? that was helpful that wasn’t Recommendations services did they helpful access? Hospital Becklin Centre (2012) Bought to Becklin on Being treated fairly Initially placed on a Professionals need to section 2 now on and equally by staff section 2 since give people a choice, section 3 has ensured a moved to section 3 listen to them and not comfortable stay doesn’t understand take away their rights why Medication is helping, but needs to be out Being detained was and about against own will, felt was not being listened to and not involved in decision making

“The voices have gone but I am broken”

Touchstone Housing Referred to by key Housing Support Team worker Worker signposting to different groups Assisting with buying essentials for new home

Supporting with independent living skills and settling in a new area

28 Storyteller M – My nurse, sympathetic and caring Bangladeshi Female early 40’s with Depression, story told in the community

Where are they What services did How did they What happened What happened Individual now? they access & enter services? that was helpful that wasn’t Recommendations where? helpful Community Becklin Centre (2011) Been in hospital Sympathetic and Having limited Ensure Doctors use before Referred by caring nursing staff English sometime jargon free language CPN Had day release to be made it difficult to with family understand the Better access to the Doctor Multi-Faith room Accompanied by ward staff when available Wasn’t informed by to use of prayer ward staff on facilities previous admissions of Multi-Faith room Appreciated being on an all-female ward Husband noticed signs for Multi-Faith Speaking to a room member of staff (Health Care Can not access Multi Assistant) in own Faith room without a language felt like member of staff being at home member CPN Supportive CPN who Would be less More staff from BME visits regular stressful and easier if background CPN was from a Working together similar background with CPN on care and support needs

CPN willing to learn about other cultures

29 Storyteller N – If ‘only’ they listened Pakistani/Kashmiri Male aged 41-59 years with Depression, story told in the community

Where are What services How did What happened What happened Individual Recommendations they now? did they they that was helpful that wasn’t helpful access & enter where? services? Community- Sectioned 2011 - Self referral My religion Was in a manic state. Managers need to be trained on Working for Darlington (1 Did not sleep at all night diversity, recognise their own a Mental week) Anti- before sectioned. prejudices, how they instruct their staff. Health Leeds Newsam depressants/patient and Crisis team advised to organisation Centre (3.5 staying calm watch TV. "Messed me More BME professionals at decision- weeks) (2007- Family & Employment up watching horror making/Senior levels. 2009) Re-introduced myself to movies". my religion - "turned to Investigations/enquiries/monitoring as my lord" Did not get introduced to why BME’s are being over-diagnosed to Crisis Team via when sectioned. Family gave him space GP/Police - had to ring and support them and go voluntarily “there were lots of non BME patients in to Becklin hospital who came in voluntarily and Has accepted having a had a good treatment, that made me condition but does not “Met people on the more angry” agree with diagnosis. ward who I made friends with who have Speak and engage with patients to calm Indian consultant was lost everything” patients down surprised he was sectioned. St Mary’s Being detained “There is a difference between being Hospital Being left in a room for angry and violent. I have never hurt ages, wanted to leave anyone or being violent towards but realised door was anyone”. locked

Community New Workplace service Because of heavy police - Leeds presence/escort, felt Mind/Community ashamed and does not Links/Touchstone now speak to neighbours

30 Key Thematic Analysis

Based on feedback related to suggested improvements in service delivery from all 14 participants, the following key themes were identified.

1. Person centred care 2. Improving access to services 3. Staff training and development 4. Meeting cultural and faith needs 5. Improved BME staff representation at all levels 6. Wider mental health awareness (in the community and non-mental health organisations e.g. the Police)

Overview

The 14 participants in total identified 64 recommendations which are gathered under 6 thematic headings.

Where participants mentioned a recommendation more than once, using different words, these have not been duplicated in this report.

Participants identified a number of recommendations interdependent with others. For example those participants who highlighted the need for service providers to offer better person-centred care also linked this with the need to develop and train staff thus enabling the facilitation of improved person centred care.

The main recommendations identified by participants -16 instances in total (25%) - are related to people being at the centre of their care. A central desire is to provide a menu of choice for BME service users.

Over a quarter of all recommendations identified the need for staff delivering mental health services to be better trained to meet an individual’s cultural need.

These findings suggest that Mental Health Service providers need to offer more choice and ensure care plans and services are person centred taking into account an individual’s cultural needs. For this to be effective staff need to be better trained and developed ensuring that service users are at the heart of how care is accessed planned and delivered.

Each theme is detailed below including quotes taken from the participant’s stories.

1. Person centred care

9 out of 14 participants in 16 instances emphasised that service providers should be more person centred. Based on the stories collected, participants felt that services should be provided based on their individual needs, ensuring that their issues and their preferred treatments are met. Generally, those 9 participants felt that services were putting in their own professional perspective before considering the views of service users. 31 “ Like you are doing now talk to people, find out how they are feeling and if their needs are being met. Like the staff at Touchstone are doing this is more important than medication but medication does help too.”

2. Improving Access to Services

10 participants on 15 occasions highlighted the need for better access to a wider range of services based on their wishes and needs. For example; increased access to therapeutic support, advocacy, employability and other activities on the wards. The overwhelming majority of participants highlighted the importance of accessing non-medical services, where they are given a choice. A few participants indicated the need to complement medication with therapeutic and other similar activities.

“ I can’t say I’ve had much support from the wards but once I moved out of there and moved to St Marys, I felt that was a good experience. Nice experience, treatments, good experience being a service user at Touchstone, Community Links, Community Alternative Team, very positive in helping me get where I am now. Volunteering over the years has helped so yeah having some sort of structure and support and people who know what they are talking about and can advise me, and having the right people in the right job can also help.”

“Pool, table football, TV, Lunch club, walks and stuff to do in the park, badminton, gym, art groups, looking after the garden, trips to the cinema, so yeah the right staff, the right structure, useful services, you can’t please everyone but most activities people can engage with.”

“Training for people to get back into work or education. If these are in place, it would be easier and faster to recover from mental health.”

“Having this Touchstone support has been crucial in my journey. Unfortunately this came two years later and my GP was the one who said do you know about Touchstone and he referred me.”

3. Staff Training and Development

9 of the participants in 15 instances emphasised the need for greater training and development opportunities for staff delivering mental health services to better enable them to meet service user needs. It should be noted that this applies to all staff, including BME staff as some participants felt that services did not meet their needs fully, regardless of who was delivering it. Some participants felt that some staff were too prescriptive, offered limited choices and showed little compassion when planning and delivering care.

“This time round I felt quite let down by professionals, part of the relapse was I regularly saw a psychiatrist whereas on this occasion I saw like a common doctor and he said I should be taken off my medication to see how it goes, I only 32 had one episode at that point, to reduce the medication which was all good and well in essence. I wasn’t monitored I should have had a proper care plan in place, I should have supervision over seeing it, I didn’t have that, as a process for reducing medication I got to a point where I became unwell. I could see, everyone else could see, I was sliding down hill that was a bit of negligence from the professionals of medical professions.”

4. Meeting Cultural and Faith needs

7 participants believed that service providers were not fully meeting their cultural and faith needs – even though they identified their faith as being crucial factor in their recovery. There were some examples of staff not being aware of dietary requirements and lack of awareness of facilities available for service users to carry out their religious observations. This suggests a lack of cultural and faith awareness amongst some staff and indicates that service providers need to invest in further training and development opportunities for staff.

“ I wasn’t informed by ward staff on previous admissions of Multi-Faith room my husband noticed signs for Multi-Faith room”

“I have learned to be more patient, it’s been stressful, I don’t like to be in confined spaces, I like to be outside, at home and close to my mum see my sister every now again and go out in town when I feel like I want to go for a walk, my mum would be an important person in my support package when I get out of hospital.”

5. Improve BME staff representation at all levels

6 of the storytellers recommended the need for a greater representation of BME staff within mental health services. In particular participants emphasised the need for increased representations at senior decision making levels whilst there was a perceived over representation at junior levels and auxiliary level staff. They seemed to think that greater BME representation would ensure greater cultural awareness, and greater value being given to the role of cultural identity as a key part of recovery.

“ Having staff in hospital from BME communities because these people will understand the different cultures and be sensitive to our needs. Then there won’t be any discrimination or we won’t feel second class.”

6. Wider Mental Health Awareness (in the community and non-mental health organisation e.g. police)

5 of the storytellers believed that more could be done to raise awareness of mental health issues in their communities and amongst non-mental health service providers operating in the community e.g. the Police. Participants felt that there was still considerable stigma attached to their mental health illness which in some cases made their situation worse.

33 “I even had an incident with the police in town because my English was not so good they just thought I was taking drugs and took me into the police station. This is sad that professional people do not recognise when someone is ill and just think we are all bad. I do not even smoke cigarettes do not like it, never mind take drugs.”

“It’s like my Mum who has always been at my side, I think it’s because of religious belief, but with my dad and my brothers there’s no way I can challenge that. If I call them they sometimes say at this time of the year we cannot talk to you for traditional reasons and so from January to March I am not able to talk to my Dad and when I talk to them they won’t come to the phone and say it’s because I have mental illness and at this time of the year they say they cannot talk to me.”

Conclusion and Recommendations

Conclusion

This report provides a useful insight into the experience of BME service users accessing mental health services in Leeds.

The information provided by the service users indicates that there is still a perception amongst BME service users that inequalities and discrimination still remains. Based on the information provided many of the storytellers highlighted negative experiences with some service users expressing fear of being admitted to services.

A few storytellers expressed how beneficial and important inpatient services were. Having a member of staff who could speak their mother tongue language made them feel at home and how being in hospital gave them a break and time to reflect and find their inner self.

The issues highlighted by the storytellers reinforce the findings in recent local and national reports. For example the report published in June 2012, Enhancing Care Pathways for BME communities states; “The importance of health professionals examining their own worldview and those of their clients cannot be over- emphasised and this has been reinforced in the results of interviews undertaken in this study. There is still a need to ensure at the local level that all staff gain understanding and competence around cultural belief to engender respect for different viewpoints, and health expressions”.

In order to fully appreciate the findings of this report, it will need to be read in conjunction with other recent quantitative and qualitative reports.

34 Recommendations

Recommendations are based on the issues identified by the storytellers. The following recommendations are proposed.

1. Secondary mental health service providers should find ways of ensuring that their staff deliver more person centred care and that evidence is utilised to ensure this happens.

2. Inpatient service providers offer more non-medical treatments/choices to BME service users. Participants expressed that by providing a variety of non-medical treatments meeting their individual needs, this would enable better engagement leading to increased patient empowerment and choice. Many participants felt that this would speed up their recovery.

3. All professionals and staff to be regularly trained and developed around cultural awareness and better understanding of the diverse needs of BME communities. The general consensus amongst service users in this report is that staff and professionals working in mental health services show little empathy and lack understanding of service users individual and cultural needs.

4. Participants believed that more promotional work needs to be carried out by frontline staff including CDW’s to tackle stigma and discrimination related to mental health within families, BME communities migrating to Leeds and amongst non-mental health agencies where there is a lack of awareness.

5. There needs to be greater partnership working with a number of agencies in the voluntary and public sectors, such as employment and educational agencies. The Chief Executive of LYPFT, has recently highlighted (BME pathways professionals and staff perspective report) the need to embed inpatients services within the community by working more collaboratively with services provided in the community. This report also highlights the need for more community based services to be delivered in inpatient settings.

6. There needs to be robust monitoring and auditing of mental health services to continually measure and track the experience of BME service users accessing mental health services. This will ensure not only the needs of BME service users are met but, more significantly, that mental health services are meeting their service and legal obligations.

7. Establishing a BME service user advisory group similar to ‘your views’ group to work in partnership with inpatient service providers.

35 Appendix 1 - Work plan

BME More People Plan and execute a Production of a report collating evidence of BME Hafizur Draft service will have a project to identify pathways in and out of a range of mental health Hussain Report in 6 user positive a number of BME services – what worked well and why and what didn’t. months pathways experience service users and Meet with through of care and follow their A better understanding of the cultural differences in Karen 0-6 months mental support. journey through access, take up and use of mental health services. Pearce St health mental health Anne's services. Monitoring services (ideally Member of NHS Leeds Enhancing Care Pathways for Project 0-3 months and including BME patients Project Steering Group Manager evaluating experience of to identify 0-6 months effectiveness pathways into and Devise a questionnaire to gather BME patients partners of service out of primary, experience on Pathways and 0-3 months delivery, community, Links. especially secondary and Advertising the project 0-3 months around tertiary mental Meet with equality health services Identify service users to map journey Tracy 0-3 months needs. including third (CDWs) Grey NHS sector services). Leeds 0-3 months The aim of the Improved and better care pathways for particular project is to groups 0-6 months provide evidence Project to to commissioners BME people have Knowledge of whole range of services take 6-12months and providers of advice what influences a Service users have increased understanding of how MH from the 6-12months positive experience Services work in different sectors PAFRAS and how services pathways 6-12 can be improved Better discharge planning project on months to make this the Reduction in re admission methods norm. and 12- Increased referrals to Voluntary and Community evaluatio 18month Services, Psychotherapy including IAPT n

12- 18month

36 Appendix 2- Toolkit

STORYTELLING (Power of Story) – Toolkit guidelines

BME service user pathways through mental health services.

Monitoring and evaluating effectiveness of service delivery, especially around equality needs.

1) Storytelling Overview describes the project in brief from start to finish establishing timescales, aims and objectives.

2) Storytelling Consent Form Information gives patients, researchers and CDW’s information on obtaining consent, what do patients have to do to participate, confidentiality and what if the patient changes their minds or wishes to withdraw.

3) Storytelling Consent Form is the form needed to sign up patients who are willing to participate in the project.

4) Storytelling Case Study Information is a guideline for researchers giving tips on do’s and don’ts and information on best practices obtained kindly from PAFRAS research team.

5) Storytelling Case Study is a standardised form to assist researchers in capturing uniformed stories from all patients.

6) Storytelling Trends and Themes is data taken from LYPFT Mental Health Data Set and patients forums, to shape themes in the Storytelling project.

7) Storytelling Outcomes Form is for researchers to complete after each session with patients.

8) Storytelling Useful Numbers is an information sheet for further support/assistance.

9) Story telling Training is a series of exercises to give researchers an opportunity to practice telling stories. It is also about trying different techniques to narrate, listen, analyse and summarise stories.

10) Storytelling Measuring Success is a tool to track improvements and record milestones.

Full toolkit can be provided on request

37 Appendix 3 –Sample Story

Can you tell me a bit about yourself and your background?

I was schooled in Britain and lived in the Chapel Allerton area of Leeds. I do not wish to give any further details as that should not matter to you.

Can you tell me a bit about your illness/condition?

I started hearing voices about 2 years ago, these voices were telling me to do bizarre things, some days I would wash my hair 4 times and end up with a cold. Spiritually it had got to me, I was living in a shared accommodation and somehow staff had found out I was sleeping in the store room of my flat, I do not know how they knew, how could they know when the store room is in my flat. One day I slept in the store room and someone had arranged to help me. A Social Worker and doctor came to detain me but I refused. I then went back into the store room and they called for an ambulance. I was placed on a section 2 but since have moved on to section 3, I do not know why they have put me on section 3. I do not believe I have a mental health condition because I hear voices, I am being labelled. I am on depot the medication, which is helping but it has its side effects. I’m ok now so do not need it anymore.

What about your journey?

Recently I have not been able to sleep I keep hearing voices, staff keep telling me what to do like wash your hair and stuff so that I stay busy, they are acting as God over my life. The spirits pick on someone who is doing ok so they can spoil them. I had to give up my current home but I will not be going back there… it’s like a ‘dog returning to its own vomit’. I am now looking in taking up new accommodation which is being arranged for me. This is the first time I have been in hospital and I really shouldn’t be here, I’m not hurting anyone. The staff are good in here I do not feel being treated different or anything, they do not bother me but it is the whole system which needs looking into as I should not be here any longer than necessary.

What other support do you receive?

I will be moving into my new home, I have a support worker from a voluntary organisation, oh she’s from Touchstone, she will be helping me and guiding me to services that might be helpful for me, am keeping busy at the moment I’m shopping to decorate my home. I want a fresh start. I enjoy swimming, knitting, reading and will try to attend other activities too. I don’t need medication I need to be out and about, keep busy.

Have you ever encountered stigma or discrimination because of your illness?

I am so embarrassed; they shouldn’t have bought me in like this and then placing me on section 3 that’s even worse. They have labelled me or given me the label of being mentally ill.

38 How did you challenge the stigma and discrimination you encountered?

I have had no choice but come into hospital

What would you say to someone suffering in silence with mental health?

Speak out, it’s only when you share your story you will find help. Nobody believes it and everyone denies it. I never believed I’d be sectioned.

What can others do to help someone with a mental health?

Listen and don’t judge. I wasn’t listened to and no one believed what I had to say. They took away my self-esteem, hopes and aspiration. ‘The person in that room has moved out’. I felt like saying I was dead. I gave everything away to charity, I couldn’t keep anything. I was stressed, anxious and fearful. Lost all dignity, my feeling are all messed up I do not know who I am. The voices have gone but I am broken. It happened so fast and I didn’t have time to talk to anyone. Going from one section to another has made it worse.

I was made to admit against my wishes being in here. I had plans which have been thrown further back.

If you were in charge of designing mental health services, what would you say were the most important things to include?

I would say to professionals, give people a choice, talk and plan with them just because you have the power do not take away people’s rights and freedom like what they did with me.

People should be listened to, not always told that this is going to happen, it has been a painful ordeal for me.

39 40 41