understanding how asylum seekers and refugees access and experience mental health support in leeds

7/29/2019 Understanding how asylum seekers and refugees access and experience mental health support in Leeds

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October

2012

Understandinghow asylumseekers and

refugees accessand experiencemental healthsupport in

Leeds

A report on PAFRAS/TouchstoneAction Research project 2011-2012

Dzmitry Karpuk, Mary Cunningham,Rupinder Kaur,Samantha Short,Caitlyn Cannon, David Odunukwe &Jon Beech


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ContentsPage

Section 1 Introduction 21.1 Introduction 21.2 Background 21.3 Research Objectives/Project Purpose 3

1.4 Methods & Approach 4

Section 2 Findings 72.1 The Action Learning Sets 72.2 The different meanings of Advocacy 82.3 Refugees and Asylum Seeker perspectives

92.4 Mental Health and RAS Workers perspectives

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Section 3 Pathways around the current system13

3.1 The impact of immigration status on refugee and asylumseeker mental health service users and their care pathways

133.2 The care pathways of refugee and asylum seekers

133.3 Types of treatment

163.4 Analysis of trends 173.5 Features of an effective mental health pathway for Refugees

And Asylum Seekers17

3.6 The role of secondary services19

Section 4 Recommendations & Conclusions20

4.1 Recommendations from refugees and asylum seekers20

4.2 Recommendations from mental health workers & RAS staff

234.3 Conclusion 25

Appendices1 Action Research Methodology 262 Case Studies

274 Care Pathways

395 Types of treatment and preference

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Section 1

1.1 Introduction

In July 2011, NHS Leeds commissioned Positive Action for Refugees and AsylumSeekers (PAFRAS) and Touchstone to undertake some participative research

into the way in which Refugees and Asylum Seekers (RAS) navigate their way

into and through Mental Health Services of Leeds,

how existing support systems can be made leaner and more responsive,

how the system might better respond to the needs of people in mentaldistress, but who do not meet the criteria for mental health interventions.

The research element of the work was hosted and performance managed byTouchstone within the BME Community Development team. This research is acollaborative piece of work drawing on the strengths of both Touchstone andPAFRAS.

1.2 Background

Leeds is the third largest dispersal centre for the UK with more than 1390 RAS. 1

Research indicates that this group is five times more likely to have mentalhealth needs than the general population and more than 61% will experienceserious mental distress.2 People in this group are less likely to receive mentalhealth support than the general population3, and 37% of those RAS asked saidthey had been to Accident and Emergency departments in the preceding 6months4.

Although not all African people in Leeds have come to live here as a result ofseeking asylum, the data on African people living in Leeds is indicative of thedifficulties RAS face in using mental health services.5 In 2010 people of Africanorigin made up more than 1.6 % of total inpatient admissions to Leeds and YorkPartnership Foundation Trust (LYPFT),6 even though they make up 0.34% of thetotal population of Leeds.7 Similarly, the proportion of African people on CareProgramme Approach (CPA) is double what could be extrapolated from theCensus figures, with those not on CPA but under the care of LYPFT almost threetimes the expected levels.8 After White British people, Africans present thesecond highest number of people presenting mood (affective) disorders tosecondary services in the city.9

Recent cuts to support and advice services for RAS (including destitute asylum

1 Equality Team Leeds City Council (2011). Equality and Diversity Annual Report 2010 to 2011, Leeds CityCouncil2 Eaton, V., Ward, C., Womack, J & Taylor, A. (2011). Mental Health and Wellbeing in Leeds: An Assessment ofNeed in the Adult Population, NHS Leeds3 Aspinall, P. & Watters, C. (2010). Refugees and asylum seekers: A review from an equality and human rightsperspective, Equality and Human Rights Commission Research report 52, University of Kent4 Eaton, et al (2011) Ibid5 Statistics on specifically RAS usage of services are not widely available.6 Ethnicity Distinct Service Use by CPA, LPFT internal monitoring, 20107 Leeds Census (2001) LCC nb ONS Experimental population estimates from Mid 2009 suggest a figurecloser to 1.32%8

Ethnicity Distinct Service Use by CPA, LPFT internal monitoring, 20109 Ethnicity Inpatient Diagnosis, Finished Consultant Episodes, LPFT internal monitoring, 2010

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seekers)10 have already put significant stress on those remaining services (e.g.Immigration Advisory Service has closed; PAFRAS experienced a 10% increasein demand for their bi-weekly drop-ins against a backdrop of 75% reduction intheir funding,11 with 73% of those visiting identifying as destitute RAS.) Leedsretains a large number of asylum seekers who have chosen to fall outside thesystem because they fear an enforced return.

Many RAS are survivors of physical assault, sexual harassment, rape or tortureand other traumatic experiences.12 The social isolation, uncertain housing andracism which many RAS describe as features of life in the UK can compoundthese difficulties make it even harder for people to seek or to receive theassistance they need.

To be effective at supporting people in these circumstances, existing systemsneed to better understand the nature of their interventions: what works, whatdoesnt; and to deliver these interventions in ways which are more effective,represent better value for money, and with clear unambiguous outcomes.

By combining the strengths of PAFRAS and Touchstone, in collaboration withstatutory and voluntary partners, the research team aimed to produce evidenceand actions that will shape a leaner, more effective and better value responseto the mental health needs of RAS in Leeds.

1.3 Research objectives and project purpose

The aims of the research were to deliver

a more robust evidence base for RAS mental health interventions inLeeds;

a clear indication of the cost of particular successful (and unsuccessful)interventions;

a greater understanding of the way in which the RAS mental healthsystem works, by all participants;

experience of joint working and co-produced solutions to complexproblems;

a reduction in inappropriate referrals and attempted interventions;

less misunderstanding and greater engagement from RAS communitiesin treatment;

clearer and more effective care pathways leading too a more responsive system and

o substantial cost savings

There was already widespread acknowledgement and awareness of the mainissues in Leeds: 131415

limited involvement of RAS in helping to design and direct mental healthservices targeting RAS communities

the inaccessibility of mental health services to RAS

10 E.g. the closure of Immigration Advisory Servicehttp://www.guardian.co.uk/law/2011/jul/11/immigration-advisory-service-closes-blames-government11 PAFRAS: 6743 visits during the period 4/9 3/10 ; 7409 visits during the period 4/10 3/1112www.solace-uk.org.uk13 Single Equality Scheme, NHS Leeds, 2009;14 MH Needs Survey Chapeltown & Harehills, Leeds ASC 200715 Eaton, V., Ward, C., Womack, J & Taylor, A. (2011). Mental Health and Wellbeing in Leeds: An Assessment ofNeed in the Adult Population, NHS Leeds

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http://www.guardian.co.uk/law/2011/jul/11/immigration-advisory-service-closes-blames-governmenthttp://www.guardian.co.uk/law/2011/jul/11/immigration-advisory-service-closes-blames-governmenthttp://www.guardian.co.uk/law/2011/jul/11/immigration-advisory-service-closes-blames-governmenthttp://www.solace-uk.org.uk/http://www.solace-uk.org.uk/http://www.solace-uk.org.uk/http://www.guardian.co.uk/law/2011/jul/11/immigration-advisory-service-closes-blames-governmenthttp://www.guardian.co.uk/law/2011/jul/11/immigration-advisory-service-closes-blames-government


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lack of understanding by RAS of what mental health services can offer

language and cultural barriers

the stress generated in the system by inappropriate referrals to mentalhealth services of people in mental distress, but who do not meet theeligibility criteria for treatment by mental health services, and the coststhat these incur,

The substantial costs generated outside mental health services (A&Edepartments, Ambulance Service, GPs, Police, Voluntary Sector) byinappropriate referrals (including self-referral) of RAS in mental distress,

The damage and distress which occurs when people become caught upin a mental health system which is ill equipped to meet their needs, andthe vicious cycle of fear and stigma this produces.

What has been lacking so far is a systematic method by which this awarenesscan be used to transform services, by those with experience of thesedifficulties.

Our hypothesis was that by employing anAction Research approach tounderstanding the experiences of RAS with poor mental health, those withexperience of being excluded from services, and those providing services, wecan better understand what works, why it is successful, as well as providing adriver for change inside and outside of services.161718

1.4 Methods and Approach

OversightA small multi-agency steering group was convened to oversee the research,with membership drawn from NHS Leeds Mental Health Commissioning,

Touchstone IAPT, and Voluntary Action Leeds BME Network.

The Research teamAlthough co-ordinated by a single person, the research itself was conducted bya mixture of staff from mental service providers, volunteers, service users, andthose excluded from mental health services.

MethodologyA mixed methodology was used, drawing upon ideas taken from the values ofaction research, action learning, and participatory appraisal. The research teamwere very keen

to find a way in which all participants could better understand thesystems and processes of which they are a part (research), and

to use this understanding to make dynamic changes to this same system(action) rather than feeling like passive recipients of someone elsesanalysis.

A longer description of the rationale behind this approach can be found atAppendix 1.

The Action Learning Sets for RAS and MH workers

16 http://www.uclan.ac.uk/schools/school_of_health/assessment_approaches_health_improvement/17

Delivering Race Equality, DH 200618 6.22 p59 No Health Without Mental Health, DH, 2011

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After gathering the details of services involved in RAS support and mentalhealth across the city19, a targeted invitation to participate in action learningset was sent to staff from these organisations, as well as to a wider health andsocial care organisations. The aim of this set would be to reflect on currentfeatures of the MH/RAS system and how this could be improved upon.

Six action learning sets took place between November 2011 and June 2012,with membership drawn from

Addiction Dependency Solutions (ADS)

Burmantoft Health Centre

Leeds IAPT Consortium (IAPT)

Leeds Survivor Led Crisis Service (LSLCS)

North East Leeds Community Mental Health Team

Positive Action for Refugees (PAFRAS)

Solace

Street Outreach Team

York Street Health Practice (YSHP)

19http://wisdomap.com/w/FMjRZk/Mike Chitty, 2012

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Although managers and staff of secondary mental health services expressedinterest and support and were actively encouraged to attend throughout thelife of the Action learning Sets, no-one was able to participate.

The Interpreter GroupThe research team recruited and trained volunteer interpreters to support inrunning focus groups and individual interviews. A three day interpreter trainingprogramme was devised and delivered by PAFRAS and Touchstone BME CDWs combining interpreting skills with mental health awareness, to assist in thedevelopment of a volunteer interpreter team to support the recruitmentdelivery of focus groups with individuals from RAS backgrounds.

Focus GroupsA series of nine focus groups took place during November 2011 January 2012,to provide a rapid assessment of themes and perspectives which could bediscussed and analysed by members of the action learning sets. The intentionwas to draw upon the knowledge and understanding of

RAS who met the criteria for mental health services and with experienceof using them and

RAS who did not meet the criteria for mental health services, but whohave experience of mental distress, and experience of attempting toaccess mental health support in Leeds.

Deciding on themes/ who to interview in depthData collected from the nine focus groups (thirty-six participants) wasindependently analysed by three researchers. Their individual analysis weresynthesised in a set of 7 key experiences which we decided to investigatefurther. These were

1. Survivors of torture and other trauma2. People with mental health problems with families3. People experiencing severe psychological stress and behaviouralproblems (i.e. notmental illness)4. People with both mental health difficulties and difficultiesmanaging their use of either drugs or Alcohol (i.e. dual diagnosis)5. People experiencing serious mental health symptoms (e.g.psychosis) who might be expected to use secondary mental healthservices6. People expressing suicidal ideation7. People whose mental health problems combined with physicalhealth problems

One to One interviewsFifteen one to one interviews took place, resulting in fifteen case studies. Fiveof these (the studies appearing in the table as black) can be read in full in theappendix.

Although we set out to interview two people whose experience was dominatedby one particular key experience (i.e. two people who were dually diagnosed)we found that experiences frequently overlapped and that many peopleidentified with several of the key areas.

The emerging themes of the One to One interviews 1 2 3 4 5 6 7 8 9 1

011

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1. Torture/ Trauma 2. Families

3. Psychological stress

4. Dual Diagnosis

5. Psychiatricsymptoms

6. Suicidal Ideation 7. Physical & Mental

Health

Additional Action LearningSetsWe had planned two additionalaction learning sets made up ofRAS with experience of mentaldistress who were engaged withmental health services, whowere not engaged with mentalhealth service as a means ofassisting them to gain greaterknowledge and understanding ofthe system they described.

However, during the focus groupand 1:1 interviews, it rapidlybecame apparent that there wasinsufficient enthusiasm for sucha project by people experiencingmental distress.

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Fig 1 The original action learningproposal


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Section 2 Findings

2.1 The Action Learning Sets

The purpose of the action learning sets was for participants to identify areas ofconcern within the mental health and RAS support system and to take action to

address these concerns. Many of these issues have already been addressed, orwell on the way to completion. The themes, issues and actions were chosen byparticipants themselves, based on their own experiences, and the feedback andtestimony from the Focus Groups and one to one interviews.

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Issues identified byparticipants

Actions taken Outcomes

Problematic referralroutes between Voluntary& Statutory Sectors

Struggling reciprocal referralsand avoidance to offer multi-agency interventions(PAFRAS/IAPT/SOLACE/YSHP).

Referral routes into IAPTneeds to be betterunderstood by PAFRAS/Solace

Reluctance of NHS teams(especially CMHTs) to co-work clients e.g. with Solace

Joint meetings with

Solace, YSHP andPAFRAS totroubleshootreferrals

Joint meeting withPAFRAS and YHSP

Induction visits forYSHP staff toSolace, andreciprocal visit to

YSHP for Solace.

Referral protocols

agreed -increased joinedup working

IAPT partnershave establishedRAS championswithin their teams

Reduced waitingtime to access(e.g. Solacewaiting timeshalved from 6-7months to 1-2months)

Language Barriers Language barriers created by

not having multilingual staff Difficulties in identifying/using

interpreters effectively Difficulties in knowing which

written material to translate

Created a list ofinterpreting services

Produced list ofmost frequentlyused languagesspoken by RAS inLeeds

List of interpreting

services/costsproduced

Devised jointprotocols on use ofinterpreters acrossthe action learningset

Better staffawareness ofissues relating tolanguage support

Services betterable to maximiseimpact ofinterpreted

materials Greater

consistency ofexpectationsaround use ofinterpreters

The meaning of Advocacy

A lack of sharedunderstanding of the term isleading to problems acrossthe system

Agreed workingdefinitions

Improvedeffectiveness and

joint working

Awareness of AdvocacySupport Services

Advocacy services for RASneed to be identified that cansupport clients during therapyHealth Services need toaccess advocacy as part ofeffective healthcare for RAS

Advocacy mappinghas started

Advocacy jointmeetings betweenSolace and PAFRASto avoid duplication

Reducedduplication ofwork and somestaff already havea greaterunderstanding ofhow advocacysupports

therapeuticoutcomes


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2.2 The different meanings of Advocacy

Through the process of action learning and action research the wordadvocacy was used by participants in a variety of ways. Although the generalpurpose of advocacy is commonly understood to beTaking action to help people to:

Express their views, wishes and concerns

Access information and services

Have their interests represented

Secure their rights

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Issues identified byparticipants

Actions taken Outcomes

Need for greatercollaboration

Need for greater

communication andcollaboration acrossservices

Solace has untappedcapacity to support thedevelopment of otherorganisations

Complex casemeetings between

PAFRAS/YSHP/SOLACE

Extension of ActionLearning Set plannedquarterly beyond endof project

Solace & PAFRASoffering training anddevelopment supportto partners

Touchstone trainedSolace clinical groupon principles of MHclustering

Shared ideas forcreating a multi-

agency supportplans

Outcomesframework a keystrategicbusiness planoutcome forSolace

Greaterunderstanding ofwork undertakenby PAFRAS, YSHP& IAPT

Training Needs of Staff ADS, LSLCS and IAPT staff

need training in how towork effectively withcomplex RAS issues(understanding thecomplex non mentalhealth needs presented bysome RAS clients)

Identified specifictraining needs

Agreed course contentagreed upon

Solace Identified astraining agency

Training due to bedelivered by Solace

Agreement ontraining needs oftherapeutic staff

Model of trainingagreed

Missing Systems Insufficient clinical

supervision for PAFRAS MHworker

Lack of written triagemethodology/assessmenttool

Solace/PAFRAS lack tool tomeasure outcomes for RAS

Lack of paperwork/systemsto support shared care

Regular meetingsbetween YSHP andPAFRAS MH worker

Use of NICE MentalHealth Triageguidance

Touchstone sharedoutcomes frameworkused by NHS Leedswith Solace

Greater sharedawareness ofstrengths andweaknesses ofexistingsystems

Greaterconsistency inarticulating whatgood looks like


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Explore options and choices20

We found a marked difference in the way the word advocacy is used andunderstood within statutory mental health provision and organisations workingwith refugees and asylum seekers.

Within Refugee and Asylum Seeker services, advocacy usually meansIndependent advocacy and is most often concerned with the securing ofimmigration status, and meeting basic health and welfare needs. It is usuallyprovided by the same person (or at least the same agency) and can take theform of medium/long-term21 casework. It is usually reactive in nature, andresponds to the changing circumstances of the person seeking advocacy.

Within statutory mental health, advocacy most often relates to StatutoryAdvocacy- Independent Mental Health Advocates and Independent MentalCapacity Advocate, which have particular legal/technical definitions, clearlydefined role, and operate in a reasonably predictable framework. These aremost usually short-term relationships, in response to the use of mental healthlaw by professionals.

The findings and recommendations of this report recommend the wider use ofadvocacy in the non-statutory, independent advocacy sense.

2.3 Refugees and Asylum Seeker Perspectives

These findings are drawn from the focus groups and one to oneinterviews. We have attempted to group them thematically

2.3.1 Inadequate/Insufficient Professional Assistance

Many RAS feel that workers who focus on a single aspect of theircase (e.g. housing, or mental health) to the detriment of theirwider wellbeing.This left many RAS feeling that they were not listened to,or that workers do not fully appreciate the interconnectedness of thedifficulties they face. People also reported feeling that the physicalsymptoms they presented were connected to their poor mental health, butthat medical staff failed to recognise this connection.

Inconsistent care and lack of understanding by GPs has led tophysical health issues not being adequately investigated- resultingin one third of the 1:1 interviewees reporting unnecessary emergency NHSadmissions.

2.3.2 Problems with appropriate Referrals and long waiting time

RAS often lack a clear route into and out of mental health support.Even staff with experience of supporting RAS found it hard to findand secure appropriate mental health support for their clients.Manypeople reported confusing referral processes where they did not understandwhat was happening, or where or why they had been referred. As aconsequence many people reported repeating their stories over again,moving from one service to another, and a lack of clarity in referral processled to them to doubt the knowledge, understanding or commitment of the

workers concerned.20 http://www.leedssafeguardingadults.org.uk/documents/policies_procedures/imca_safeguarding_and_advocacy_policy.pdf21http://www.advonet.org.uk/index.php?option=com_content&task=view&id=59&Itemid=135

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Some service users found it very difficult to book initialappointments with their GP.Although this is a common experience withGeneral Practice, this particularly impacts on RAS seeking support with theirmental health, as they often do not know their rights or how to complaineffectively.

Lengthy waiting times for mental health services to process

referrals, and reliance upon postal communication leads to manypeople losing contact with services. The average waiting time formental health support was reported as 4-6 months. During this period,people reported changing address several times. A reliance on postalcommunication often leads to letters going missing and appointments beingmissed. There was a marked preference for communication by (usuallymobile) telephone and text message.

Sign-posting is unpopularand perceived as an ineffective method of self-management, especially when people did not understand the service beingoffered. Even where signposting information was provided to RAS, by thetime people came to use it, this information had been lost or forgotten. The

solution was felt to be greater joined up working between agencies witheligibility and suitability being confirmed before the referral is actuallymade. Many RAS thought referrals should also be followed up by text orphone to ensure that people understand and remember when, where, andwhy they should be in particular places.

2.3.3 Inadequate or confusing information for RAS clients

There remains deep frustration at the lack of consistent up to dateinformation regarding existing services in Leeds.Most RASexpressed the need for a central point of information and help,

physically locating all the services together and making all the possibleinformation available for RAS in various languages. Confusion over thephysical location of services often makes them very difficult to access,especially for people who are already distressed. A service user said, whydont they have services in the same place? I get lost.

2.3.4 Clients Values and Beliefs

Many RAS with symptoms of mild to moderate mental healthproblems do not recognise these as indicating difficulties with theirmental health. This can lead to people not seeking assistance withdifficulties until problems have become more severe.

Many clients are unclear about what information [about theirmental health] is shared with authorities outside the mental healthsystem. Differences in socio-cultural background result in concerns aroundconfidentiality and stigma associated with mental health and a fear thataccessing services might negatively affect their application for asylum.

Mental ill health remains deeply stigmatised in many RAScommunities and many people fear being labelled as having mental healthproblems. Cultural inhibitions, suspicion of being misdiagnosed or fear ofbeing sectioned inappropriately, and concerns around confidentiality

being breached are potential barriers to seeking mental health support.Myths and stereotypes abound, unchecked and unchallenged, and there is

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little knowledge or awareness of programmes like Time to Change outsidemental health services.

2.3.5 Clients Needs and expectations

There can be a mismatch between the expectations of RAS and theability of workers to meet these expectations. Where this potentialmismatch is not recognised or challenged, or where staff do not activelymanage expectations, clients can be left with a sense of being let down oreven feeling betrayed or abandoned by the service, and even the widerSystem.

2.3.6 Engagement

Many potential service users expressed a lack of trust in [mentalhealth] specialists and services. Poor first impressions/contacts withservices make a lasting impression, as do negative word of mouth reports.RAS specific organisations have better understanding and therefore helpmore; it feels as though other services do not see RAS clients as a priority.

For most service users, physical and mental health needs were lessimportant than housing and food needs.For clients to prioritise mentalhealth interventions over other pressing concerns, they need to know howmental health interventions will influence or make a difference to theirneeds/struggles, and what a positive outcome will look like. There appearsto be little psycho educational work at present although where it doesexist (e.g. group work at Solace), there has been a reduction in DNAs, andoutcomes have improved.

The cost or inconvenience of travelling long distances for mentalhealth appointments reduces client engagement. Those organisations

who assist clients with travel tickets or lifts often find client engagementimproves. Some RAS described high levels of anxiety prior to appointmentsin places they had not visited before, and said that having to travel toanother part of town on a strange bus route reduced the likelihood of themattending successfully. The cost of public transport is also a significantbarrier to engagement.

2.3.7 Socio-cultural isolation

Many RAS clients learn English as a way of better equippingthemselves to ask for help and make complaints. Poor quality

interpreters can be big hindrance, and many people prefer to work withoutthem, once their English is strong enough.

Volunteering is often a way for RAS to reduce their social isolationas well as an opportunity to share their knowledge andunderstanding with others.

Most volunteering opportunities within RAS organisations focus onRAS offering practical support to other RAS. There appear to be fewopportunities for RAS to influence the way in which services are planned orgoverned, outside periodic consultation exercises.

Providing training to community members, organising workshops,

seminars etc. can help spread awareness about mental healthissues and also sensitise other community members, volunteers,

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professionals about the socio-cultural, psychological issues etc. faced byRAS and adapt accordingly.22

2.3.8 Perceived effect of immigration status on the quality ofcare provided

Refugees report the attitude of service providers improving whentheir immigration status changes. The confusion around eligibility forservices left some people feeling we are not allowed to have any supportand we are less important than other clients and that they do not haveequal rights as other clients.

Some people felt patronisedby staffand treated as though they werestupid, even though systems and procedures were confusing and opaque.

2.4 Mental Health and RAS Workers perspectives

These findings are drawn from the action learning sets and interviews

with staff and managers from secondary mental health services

2.4.1 Services often struggle to communicate effectively with clients.Professional interpreting services are not available at every service,especially those in the voluntary sector due to limited funding. There isheavy reliance on bilingual staff or volunteer interpreters who are ofteninexperienced in mental health, and some clients find it hard to trustvolunteers who are not adept at managing confidentiality effectively.

2.4.2 The complexity of problems presented by RAS means that allorganizations struggle to resolve these in isolation. However,pressing immigration or housing concerns may present a barrier to

effective treatment of mental health needs.2.4.3 Agencies that dont collaborate with others often feel isolated,

duplicate work and confuse clients.Ironically,this was particularlytrue of organisations who said they provide a wraparound or holisticservice (e.g. Solace, PAFRAS), when they found their services unable tomeet the needs of individuals with particularly acute mental healthneeds.

2.4.4 Workers in both sectors highlighted the importance ofunderstanding what other services did. Throughout ourconversations there was confusion regarding what help and serviceseach organisation provided, and misconceptions were only overcome

through deliberate and sustained joint working.

2.4.5 Ambiguous policies and roles result in no one being clear whois doing what and where responsibility lies. Some of this was feltto be a reflection of different organizational culture/size development.However, the most successful partnerships all identified clearlycommunicated roles and responsibilities.

2.4.6 Care is poorly coordinated across different service sectors, andwould benefit from a common approach. Staff fromsecondarymental health services expressed frustration at the difficulties they facedwhile referring to some voluntary sector projects due to a lack of clarityon when and how they would work with referrals from secondary mental

22The recent Migrant Community Network programme includes a Mental Health Awarenesscomponent, and Talking Our Language mental health awareness programme delivered by

Touchstone CDWs provides a template for culturally sensitive work in this area.

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health. Conversely, staff in the voluntary sector expressed frustration atthe rigidity of statutory sector referral procedures.

2.4.7 The ever-changing policy landscape on immigration, NHSorganisations, and drastic cuts to all sectors make adapting tonew changes and collaboration even more difficult.

2.4.8 The best outcomes are delivered by well-trained, self-confident

teams.Mental health workers sometimes admitted to a lack ofconfidence in their ability to work effectively with survivors of torture andother traumatic events. Similarly, the people we spoke to said thatspecialist mental health training for interpreters was needed to buildtheir confidence at working with people in distress, to ensure theyunderstood the context in which they were interpreting, as well as thenegative impact of inaccurate or summary translations.

2.4.9 Mental health services working with RAS need to integrateadvocacy services into care pathways, to ensure the barriers toengagement in treatment are removed.

2.4.10 The development of dual diagnosis services may present aninteresting model of shared care pathways for the sector whereservices work in parallel with each other, complementing one another,rather than competing or being delivered one after the other. Mentalhealth staff realised the importance of developing collaborative modelsbased on up-to-date mapping of provision and shared workingarrangements

2.4.11 Creating a strategic network for RAS mental health services willprovide a mechanism for achieving greater collaboration.Thisnetwork will mostly involve senior staff holding managerial roles andprovide a continuation of the work started by the action learning set.

There was concern from all participants that such a network would needa nominated facilitator to coordinate these multi-agency reflections.

2.4.12 A forum for reflective practice alongside other agencies willimprove the quality of client outcomes. Such a forum would providean opportunity for personal and professional development of staff as wellas more cost effective interventions. Although there is currently noagreed mechanism (outside CPA) to discuss complex RAS clients usedacross the system, PAFRAS, Solace and York Street Health Practice arecurrently piloting a complex case review process, which has shown earlysigns of success.

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Section 3 Pathways around the system

3.1 The impact of immigration status on RAS mentalhealth service users, and the care pathways they use

It is widely acknowledged that the UK asylum system is complex, and has

undergone frequent changes and amendments by successive governments.

The services for which RAS may be eligible often depends upon their

immigration status. Put simply, a person seeking asylum who also has mental

health services may find themselves eligible for a mental health service one

day, ineligible the next, and then eligible once again - depending on the status

of an appeal2324. This leaves many service users and providers confused as to

what can be provided and what they can expect.

In addition, immigration status impacts upon where an asylum seekers housing

is provided. A person may find that they move many times, or be told they

must live in a completely different town/city depending on the which properties

are available to the Home Office housing provider. Alternatively, they may be

told that their asylum claim has been unsuccessful and made destitute.

As a consequence, many asylum seekers gravitate towards voluntary sector

provision - which is independent of statutory services who do not usually

withdraw support based on immigration status.

In such circumstances, creating a robust care pathway is very challenging,given that people find themselves in or outside the system with very little

notice.

3.2 The care pathways of Refugee Asylum SeekersThe picture derived from the interviews and action learning sets is tooconfusing to adequately present in a single diagram.

The general picture is one of voluntary sector engagement (via PAFRAS orSolace) who then provide either mental health triage, crisis management,

independent advocacy support, and either group work (stress management),individual therapy (Solace) or referral onwards into both primary and secondaryhealth care systems.

Although this sounds simple, what we have found it that apparently simplereferral pathways can be confused by changes to a clients immigration status,a client being removed to a different part of the country, or confusion on thepart of the referrer as to what the destination service actually provides.

It is not unusual for clients to have had dealings with both statutory andsecondary care at some point. As with many black and minority ethnic groups,RAS feel more able to connect with services when they are provided with

Advocacy, and practical support

23http://www.ind.homeoffice.gov.uk/asylum/24 http://www.asylumaid.org.uk/pages/the_asylum_process_made_simple.html

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Care co-ordination Engagement and relationship building A flexible, person centred approach Cultural competence and capability Additional support in the form of either complementary therapies or

volunteering opportunities

Instead of a single diagram, we have presented six journeys through services atAppendix 3.

3.2.1 Torture/TraumaThe majority of the services users we spoke with (and two thirds of the casestudies) reported experience of trauma and/or torture. For most, whatinterventions they had came from Solace who also proved instrumental inreferring people into secondary services.

For most of these clients, the complimentary therapies provided by Solace andIn Touch were also felt to be effective in the management of on-going pain andphysical symptoms, with staff describing how effective these therapies were atbuilding engagement with clients, and preventing drop-out.

None of the statutory services (adult psychological services) offer similarcomplementary therapies, although they have approached Solace tosupplement their care with these interventions.

3.2.2 FamiliesAlthough we were keen to get a picture of what life was like for people with RASfamilies, they spoke very little of specialist family support available to them.

None of those interviewed mentioned the support of social services orChildrens teams. For the most part, support was offered in the same way as itis offered to single people or couples. Given the circumstances of the people wespoke with (having no recourse to public funds) it is not surprising that theywere not receiving much support from Childrens Services.

More surprising was the relatively low profile and uptake of Solace FamilyServices. It appears that most referrals to this service come from NHS partners(Child and Adolescent Mental Health Services) although there is too littleevidence to draw conclusions as to why so few people know about this offer, orhow effective this service is.

3.2.3 Psychological StressSeeking refuge in the UK necessarily entails significant amounts ofpsychological stress. Working one to one with people who are isolated andexperiencing existential peril for prolonged periods of time can also putsignificant strain on workers.

Both PAFRAS and Solace provide mental health triage25 to ensure people insignificant distress are escalated within the mental health systemappropriately.

In addition, they provide group activities for people to share coping strategiesand provide mutual support, whilst they await specialist mental health services.

25http://www.rcpsych.ac.uk/PDF/Mental%20health%20triage%20scale%20SB.pdf

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http://www.rcpsych.ac.uk/PDF/Mental%20health%20triage%20scale%20SB.pdfhttp://www.rcpsych.ac.uk/PDF/Mental%20health%20triage%20scale%20SB.pdfhttp://www.rcpsych.ac.uk/PDF/Mental%20health%20triage%20scale%20SB.pdf


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It is hard to underestimate the importance of these groups to both services andthe people they serve. They provide a useful opportunity for isolated distressedpeople to socialise, to show solidarity, as well as building on a solid base ofpsycho-social education and guided self-help.

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3.2.4 Dual DiagnosisReferrals in/out of drugs services seem reasonably straightforward, once aperson is registered with primary care. This reflects the significant work done inboth substance use and mental health services to ensure joined up care andthe principle of no wrong door - which the first door you come to gets you tothe right place. Co-ordination of care remains a key issue in this area, althoughwhere a persons mental health is not managed under CPA arrangements - thisoften appears to fall to advocacy to provide continuity and communication.

3.2.5 Psychiatric SymptomsAs with dual diagnosis, once clients are in the system i.e. registered with GPservices, the routes into receiving support from secondary services arerelatively straightforward.

However, it appears that these routes into care are significantly jeopardised bypoor communication (lack of interpreters), or a poor understanding of how totreat a mental illness which is compounded by the effects of trauma.

It is significant that both case studies quoted suggest the importance of Solaceas a backstop for Secondary services providing people with on-going support,and fostering a level of trust that appears to have saved lives.

3.2.6 Suicidal ideationOur interviews and focus groups confirmed a widely held belief that many RASopenly discuss their intention to self-injure, or to kill themselves whenarticulating their fear of the future, or their dissatisfaction with the present. Wealso know from the recent suicide audit that statistically, this client group arehighly unlikely to appear in the suicide statistics.

Staff within the voluntary sector (especially PAFRAS and Solace) havedeveloped a variety methods of mental health risk management whichfrequently do not involve secondary services (e.g. crisis counselling, groupcounselling) or which seek to remove the immediate stressors (e.g. housingcrisis, threat of deportation) through independent advocacy.

However, these methods cannot always contain someone who is intent onharming themselves. This leads to emergency contact with secondary services.

Where there has been little or no prior involvement with secondary services,secondary services often struggle to respond in an effective or timely manner,leading to frustration on all sides. This failure to respond can lead to the costlyand traumatising involvement of the Police, Out of Hours GPs and the Accidentand Emergency Department.

That there appear to be few recorded fatalities amongst this client group is amatter of good fortune.

3.2.7 Physical health problemsWhere good relationships with primary care exist, physical health problemsappear to be dealt with quite well. Where communication is poor, it is notunusual for a RAS to shop around for support (with various GPs, A&E, voluntarysector) until good communication is established, and the physical health

problems discussed and addressed.

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It appears that signposting is both unpopular and not very effective with thisgroup. Similarly, where specialist services are situated some distance fromwhere clients live, the anxiety and expense of travel to a new place often makeappointments difficult to attend.

Independent advocacy often provides continuity and engagement to a highlytransient client group in the wait between referral and initial appointment.

3.3 Types of treatment

The 1:1 interviews mapped the different types of treatment, number of timesthey were accessed, and whether or not participants found them helpful. Theremay be a difference between how helpful a treatment is felt to be and its actualefficacy however, the research team lacked a more objective method ofassessing the relative merits of particular interventions.

The graph below shows the total number of interventions experienced by the15 people we interviewed 136 interventions in total averaging over 9 perperson.

0

5

10

15

20

25

30

35

40

Number of interventions described as

"unhelpful" in the case studies

Number of interventions described as

"helpful" in the case studies

A further breakdown of which interventions were felt to be most helpful can befound at Appendix 4 types of treatment and preference.

3.4 Analysis of trends

At present, independent advocacy services are offered to RAS by a range ofproviders in Leeds (including RETAS, Refugee Council, and Advocacy Support)although the people we interviewed mainly accessed advocacy via PAFRAS andSolace. These services (provided by PAFRAS and Solace) are by far the mostfrequently accessed by the clients questioned, regardless of the nature of theirdifficulties.

The role of advocacy seems particularly vital when dealing with clients whosecircumstances can change rapidly. It is often the advocate that remains the

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central point of contact as a client journeys through services, and who advocatefor greater flexibility and understanding from services.

The complementary therapies provided by Solace and In Touch are remarkablypopular with clients, and there is a large amount of anecdotal evidence tosuggest that they alleviate some of the pain and medically unexplainedsymptoms reported by RAS clients. As the complementary services offered bySolace are largely provided by volunteers, their complementary offer dependson the volunteers available. This is certainly an area which would benefit fromsome detailed and systematic research to discover which interventions arethe most effective in order that a core offer can be decided upon andresourced.

It is unsurprising that the more systematic therapeutic interventions(Pharmacological, individual therapies) generated the most ambivalence withthe notable exception of in-patient stays.

3.5 Features of an effective mental health pathway forRefugees and Asylum Seekers

Although it is beyond the scope of this paper and project to say exactly howmental health and RAS organisations will eventually achieve this, we offer somethoughts and reflections on what this might look like, based on our previousfindings.

Figure 2 outlines a suggested route into services, for those RAS who are not incontact with services

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Features of an effective care pathwayA common approach to mental health triage (and risk management)will help services to prioritise what response is needed, by whom, and in whattime scale.A common approach to assessment and support planning

that isdirected by the client and which is shared across all services (at the point ofreferral) will ensure continuity of service, and reduce the need for assessmentand reassessment.Independent Advocacy needs should be an essential feature ofsupport planning for all RAS with mental health problems. We havepreviously noted the confusion over what is meant by advocacy. Ideally thisneed for independent advocacy - to address social problems of housing,money, transport and more general support needs would be met by mentalhealth providers in house. Where providers cannot provide this supportthemselves, they should refer on to independent advocacy support.A common approach to information sharing and confidentiality -

where needs cannot be met effectively by a service, consent should besought to refer elsewhere and a common format for information sharingagreed (beyond the standard referral form) to ensure clients do not have torepeat themselves over again.Acommon approach to case management/co-ordination and review toprevent multiple or contradictory referrals or interventions being made.Responsibility for facilitating and co-ordinating these changes acrossto the sector needs to rest with a named individual, perhaps usingthe successful model used to transform Dual Diagnosis services inLeeds.


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Figure 2. A possible model care pathway for RAS with mental healthproblemsNB red arrows denote a two way referral relationship


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3.6 The role of secondary services

Secondary services have been a notable absence in our discussions of effectivemental health interventions for RAS so far. As we have seen, the reorganisation ofcommunity mental health services and the implementation of the single point of

access meant that they were unable to participate in the action learningprogramme.

However, when discussing the role of community mental health services, both VCFand primary care providers point to a secondary care service which struggles toengage and effectively support this client group for all the reasons outlined atsection 3.1.

Not only do Solace and PAFRAS provide the stability to vulnerable RAS to accessother services in the first place; the ongoing support of Solace and PAFRAS oftenenables secondary services to engage with this t group. It is not unusual for CPNsto use PAFRAS Drop-Ins as a way of maintaining contact with their clients. WhenCPNs find themselves unable to engage with survivors of trauma, they refer on toSolace.

It is telling that both VCF and secondary services tend only to think of one anotheras a last resort - when they have exhausted their internal range of options. Forshared care to be properly effective, the point of collaboration needs to comesooner and a proactive approach taken to collaborative models of formulation andcare.

There is a danger that by ignoring the role and [financial] resources needed tomake PAFRAS and Solace work, these services could cease to provide the skilled

and effective support which enables secondary services to deliver to this clientgroup.

Similarly, there is a real danger than unless VCF partners like Solace and PAFRAScan start to quantify the impact they have on secondary care (in terms of crisismanagement, effective referral assessment and conversion, and ongoing supportto recovery through complementary therapies and independent advocacy), thatthey will go unrecognised and un-resourced. To prevent this, they will need tostart articulating their roles in the same terms as secondary services, andmeshing with the models of care planning, risk management, and outcomemeasurements used within secondary care.

The movement made by the action learning sets in overcoming barriers tocollaboration in primary care has been significant. It is imperative that secondarycare is able to find ways to participate in the continued action learning sets, andto support collaborative ways of care management in this area.

24Figure 2. A possible model care pathway for refugees andasylum seekers based on the features outlined in Section 3.3


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Section 4 Recommendations & Conclusions

4.1 Recommendations made by RAS Clients

Assessment & Support Planning Recommendations made by RAS Clients Clients experience the

segmented delivery of servicesas a lack of empathy by staff, orlack of understanding of their

holistic needs Support provision is sometimes

patchy, ill-coordinated and poorlyunderstood by staff and serviceusers

Inconsistent care and lack ofunderstanding by GPs has led tophysical health issues not beingadequately investigated

Immediate Priorities1.1All support services should produce clear method statements of who they work

with, what is offered and the criteria of how people enter/leave the service.1.2Organisations should map where they fit in the system and how their services

can work most effectively with key partners (on the model of Dual Diagnosisservice services in Leeds)

1.3Agencies should develop a common framework of collaborative assessment andcare planning shared with clients and across organisations

1.4Independent advocacy support and access to transport should feature in all careplans for RAS clientsLonger term Goals

1.5Support services should better understand the models of care provided by otherservices, and communicate this to clients.

1.6 NHS and Social Care commissioners should recognise the importance ofindependent advocacy support in the effective delivery of mental health care toRAS, and explore models of peer and self-advocacy in this area

Referrals, Signposting & Waitingtimes

Recommendations made by RAS Clients

Referrals to other services takea long time.

Signposting for clients indistress fails as often as itsucceeds

Services often hold on toservice users rather than leavethem without support in theintervening period

The rapid assessment andtriaging of clients mental health

Immediate Priorities2.1Increase access to peer-support groups such as Solace/PAFRAS stress

management group which help contain psychological distress and which shouldbe distinct from the wider offer of support offered by the host organisations

2.2Waiting lists and estimated waiting times should be clearly communicated at thepoint of referral

2.3Where a service cannot be provided immediately, clients should be offered peer orgroup support, where appropriateLonger term Goals

2.4 All services working with RAS in mental distress should host staff trained in theprinciples and use of mental health triaging techniques

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needs (like that provided byPAFRAS) helps sustainengagement, improves self-management of distress, andreduces likelihood of crisesdeveloping

2.5Group activities - such as self-help groups can be a useful adjunct to one to onetherapy, and should be resourced as a viable and cheaper alternative to 1:1advocacy interventions

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Inadequate and confusinginformation


Access to up to dateinformation on services is hard tocome by. Services are oftenconfused about who does what

The lack of translatedinformation or interpretersincreases dependency on supportagencies and staff

Stigma and misinformationwithin RAS communities remain abarrier to RAS engagement withmental health services

Many RAS with symptoms ofmild to moderate mental healthproblems do not recognise theseas indicating difficulties with theirmental health.

Immediate Priorities

3.1 All services to offer access to an online information and a shared list of usefulresources developed on common topics, especially diagnosis and treatmentoptions (e.g. Mind, Rethink, NHS Choices)

3.2 Where information cannot be translated, services internet browsers to beconfigured with online translation services e.g. Google Translate

3.3 BME Community Development Workers to collaborate with service providers toproduce psychoeducational interventions to RAS service users to reduce stigma,

and to increase engagementLonger term Goals

3.4 Ways of sharing information (and translations) electronically should be explorede.g. establishing a Welcome To Leeds Wiki, and a single website produced

3.5 Each service to produce a short FAQ about their services, and short How Toaudio/video resources (YouTube/MP3s) developed to explain how particularservices work, or to deal with common queries

3.6 Time to Change activities should see RAS communities as a key community forengagement

3.7 The Migrant Community Networkers should ensure their work continues toaddress issues of stigma in their training course

Engagement Recommendations made by RAS Clients

When faced with existentialconcerns of securing food/housing,many clients do not prioritise

mental health appointments When clients understand thevalue of mental healthengagement, they are more likelyto seek support

Immediate Priorities4.1 Where engagement with services is proving difficult, reminders of appointments

should be sent by text to mobile phones, and transport arrangements explored

4.2 Mental health services should explore ways of delivering services to clients inplaces where clients may already seek assistance with food or housing (e.g.PAFRAS)

4.3 RAS and Mental health services should urgently explore the shared use ofbuildings and facilities to deliver services and where these facilities areowned/managed by VCF partners, space should be rented on the basis of full costrecoveryLonger term Goals

4.4 Wider use of psycho-educational interventions to assist RAS clients better

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understand and manage their situations

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Socio-cultural isolation Recommendations made by RAS Clients

RAS frequently report feelingisolated by lack of spoken Englishand meaningful occupation

Immediate Priorities5.1 Service providers to ensure clients have formal mechanisms to feed back into

service design/delivery/evaluations and where these mechanisms exist toprioritise membership from RAS community membersLonger term Goals

5.2 Support RAS to engage in meaningful activities: volunteering work, physicalexercises and relaxing activities to help them integrate and to improve theirself-worth

5.3 NHS and Social Care commissioners should recognise the importance of

advocacy support in the effective delivery of mental health care to RAS, andexplore models of peer and self-advocacy and guided self-help in this area

5.4 Organisations working with RAS to ensure clients and former clients feature onboards of governance/trustees as well as other volunteering opportunities

5.5 Promote wider uptake of bursaried places for Mental Health First Aid for groupsoffering volunteer placements to RAS community organisations

Perceived effects of immigrationstatus on treatment


Asylum seekers in particular feelthey have fewer rights than clientswith status

Once leave to remain has beengranted, many clients experiencemainstream services as unequal

Immediate Priorities6.1 Services providing to RAS should undertake Equality Impact Assessments to

ensure perceived discrimination is overcome6.2 Asylum seeking clients should be encouraged to use the complaints procedures

by services if they believe they are receiving unfair treatmentLonger term Goals

6.3 All staff working with RAS to receive regular Asylum awareness training as well

as specialised trainings about complex MH issues specifically addressing the 7identified areas of concern to understand the process, and to sensitize them tothe effects this can have on clients

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4.2 Recommendations made by mental health and RAS workers

Issues raised by professionals Recommendations made by mental health and RAS workers

The complexity of problemspresented by RAS means that allorganisations struggle to resolvethese in isolation

Mental health services workingwith RAS need to integrate

advocacy services into carepathways

Immediate Priorities7.1 Agencies should develop a common framework of collaborative assessment and

care planning shared with clients and across organisations7.2 Agencies should develop a shared competency framework for workers in this

area to ensure they are equipped to support the socio-cultural, psychologicalissues etc. faced by RASLonger term Goals

7.3Commissioners of mental health services should ensure advocacy for RAS is aspecific strand of the wider commissioning strategy for advocacy in Leeds

Services often struggle tocommunicate effectively withclients


8.1 Ensure all clinical staff have undergone training in effective use of interpreters,drawing on experience and expertise of LTHT/Solace/Touchstone, - includingthe use of Language Line telephone service

8.2 Continue to develop and deliver entry-level volunteer interpreter training basedon PAFRAS/Touchstone model

8.3 Provide regular training for volunteer and paid interpreters (Solace/Touchstone)Longer term Goals

8.4 Create a shared (list) of experienced and mental health trained interpreters inLeeds, in conjunction with LYPFT, LTHT and LCH

8.5 Ensure all interpreters listed have undergone mental health first aid training inorder to challenge mental health stigma, and to better understand the contextin which they are working

8.6 Ensure all interpreters are trained to provide accurate interpretation of what

clients say, not an interpretation of the mental health issue being discussed Care is poorly coordinated acrossdifferent service sectors, and wouldbenefit from a common approach

Workers in both sectorshighlighted the importance of moreinformation about other services

Immediate Priorities9.1 Organise regular complex case meetings on the base existing

PAFRAS/YSHP/SOLACE monthly meetings that can support delivering multi-agency interventions Professionals assessing RAS to act as a single point ofaccess - RAS champion who will be regularly in contact with other agencies

9.2 Create a quarterly strategic network for RAS workers and mental health servicesto co-ordinate their activitiesLonger term Goals

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9.3 LYPFT to nominate a clinical representative from secondary mental healthservices to attend this strategic network

9.4 Organise multi-agency cloud of information that can help avoid duplication

Issues raised by professionals Recommendations made by mental health and RAS workers

Ambiguous policies and rolesresult in no one being clear who isdoing what or where responsibilitylies

The ever-changing policylandscape on immigration, NHSorganization, and drastic cuts to all

sectors make adapting to newchanges and collaboration evenmore difficult

Immediate Priorities10.1 To avoid further confusion - a clear definition of Advocacy in RAS contexts

needs to be agreed upon by advocacy providers, with explicit reference tomainstream mental health and wider advocacy services

10.2 Review of policies and roles with support from other RAS organisations tomaintain consistency across agencies

10.3All services to publish and circulate clear guidelines about the roles, policies and

criteria for professionals working with RASLonger term Goals

10.4 Regularly map of existing MH, Well-Being and Advocacy services in Leeds

The best outcomes are delivered bywell-trained, self-confident teams


11.1Conduct a sector-wide audit of training needs for MH workers working withrefugees to identify the most pressing concerns including guidance onsupporting survivors of torture

11.2 Identify the agencies best placed to provide training and development onthese issues

11.3Provide specialized training for interpreters

Agencies working who dontcollaborate with others often feelisolated, duplicate work andconfuse clients

The development of dual

diagnosis services may present aninteresting model of shared carepathways for the sector

Creating a strategic network forRAS mental health services willprovide a mechanism for achievinggreater collaboration


12.1Create a quarterly strategic network for RAS workers and mental health servicesto co-ordinate their activities

12.2The first task should be to map what they do and how people enter/exit theirservices

12.3The second task should be to address organisational issues of confidentialityand consent for information to be shared

12.4 The third task of this group should be to develop a multi-agency assessmentand support planning tool

12.5 Organise regular complex case meetings on the base existingPAFRAS/YSHP/SOLACE monthly meetings that can support delivering multi-agency interventionsLonger term goal

12.6 Create a cloud of information on services that is regularly updated

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A forum for reflective practicealongside other agencies willimprove the quality of clientoutcomes


13.1Organise regular complex case meetings, with membership based on existingaction learning set that can support delivering multi-agency interventions

13.2Widen participation to include secondary mental health and other agencies

13.3 LYPFT to nominate a clinical representative from secondary mental healthservices to attend this network

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4.3 Conclusion

The state of mental health care and support in Leeds for RAS iscomplex and difficult to understand. We have seen that even those

providing services and those experiencing them find it difficult tonavigate, and recommendations are easy to make, and hard toimplement.

There is an urgent need for better coordination across the sector and amove away from the piecemeal development which has taken placeover the last 15 years. There is valuable, effective work beingundertaken in pockets across the city but interventions and outcomesare often variable. Although it is hard, models of shared care andmeaningful outcome measurements need to be agreed across the

sector. This is the only way in which the various agencies can prove theeffectiveness of their interventions, and ensure their continued role inan era of fewer resources, greater demands and in the face of hostilitytowards asylum seekers and refugees in the popular press.

Central to the success of this project is a change in organisationalculture. Services and teams have arisen especially within thevoluntary sector as a response to unmet needs, often devised anddelivered according to the values and priorities of those providingthem, as much as in direct response to the demands of the clientgroup.

Praise and affection from the vulnerable client group they serve areimportant indicators of success for specialist RAS organisations. But ifthis success means clients are not encouraged to access mainstreamservices - or those specialist organisations are not helping those samemainstream services to change and improve - specialist organisationsbecome unwitting collaborators with a system which remains stackedagainst people who seek refuge in Leeds.

NHS commissioners play a large role in facilitating this success throughcanny budgetary decisions, and leveraging the financial support of

wider public services (Criminal Justice, Social Care, and Public Health)to support the mental health needs of RAS. But the sector can andmust initiate change itself if it is to direct these changes. Our worry isthat issues of organisational ethos and identity will trump the need forspecialist services to become better at working in partnership.Ultimately, a refusal by the successful elements of the VCF (e.g.PAFRAS, Solace) to help other non-specialist providers to be moreeffective through collaboration, or to adopt shared measurements ofoutcomes may lead to their services ceasing to exist.

A great start has been made in the form of the action learning sets,which we hope will grow into a more systematic response to the

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complex challenges created by people with complex lives. Greatchanges have already taken place across the system: services aretalking and collaborating more and misconceptions and prejudices arebeing questioned. But a collective effort need to be made to sustainthis momentum, and to keep asking one another the hard questions

about the value we bring to the system as a whole, as well as theindividuals we assist.

Our future lies in greater collaboration, and sharing what we have withone another.

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Appendix 1: Action Research Methodology

Why we chose this method

Action research was felt to be more in tune by the agencies that had builtclose relations in these communities, and wanted to involve individual clientsin describing their experience; action research offers a qualitatively closerview of the lives of the participants, mitigating to some extent the perceivedadvantage of statistical reliability. This approach was validated by the NHSleads commissioning the programme for these very reasons.

Action research takes the initial forum of participants, assembled throughinvitation, and recognising no rank other than that offered through their ownexperience implicit is the notion that those that lives it knows it, soprofessionals are participants in a learning situation as much as clients, all

looking to achieve improvement in the patient experience. It is an attempt tomaximise the impact of minority community experience in influencingmainstream delivery, with the essential role of the community organisationacknowledged and even preserved.

The group is led by a facilitator, who will keep the discussion focussed on theobjective throughout the planned sessions while allowing related themes tobe developed as they arise, to illustrate or amplify a point. Material that isdiscussed is encouraged to be honestly shared within the group, with personaldetails being erased from notes taken of the discussion different resourcesmay be deployed to assist in recording, e.g. audio or photographic records.Recurring themes are reviewed regularly, indeed reviewing is a key part of

the learning, as it shapes further discussion, and allows important issues togain the levity they demand. The process is iterative and progressive.

This cyclical method recognises and responds to an awareness of the impactsociety and our environment have on our lives, and when investigating trans-cultural phenomena it is essential to be able to report this as it is felt, for thetransfer of knowledge and social mores determine progress in socialsituations for newcomers. Action learning is also known as participative actionresearch, and is essentially participative; it must be driven by reflection onpractice, imposing the discipline that changes incorporated in the process willbe monitored for effectiveness: it is a dialectical process between a group of

participants who have assembled to improve their practice by incorporating achange element that is subsequently monitored within the process, it is thusempirical and has the potential to initiate transformation.

In addition to the participatory nature of the research, meetings werestructured as action learning sets, again to equalise the power relationamongst participants and to encourage the concept of the space as acontinuing learning environment for the respectively assembled groups:clients and professionals alike. The programme was of six action learning sets(or meetings) for each sub-group: clients, professionals, ex-clients andinterpreters scheduled over a nine-month period.

A triangulation method was established at the end of the project anonymised case studies covering seven areas of concern were reviewed

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again by a group of clients, ex-clients and researchers identifying consistentthemes, and areas requiring further study. While this is the first study of itskind it is to be hoped it is not the last, as we believe it and the results andrecommendations it offers, are ground-breaking and offer a significantopportunity to embark on positive change.

See also the material for participants at http://leedsras.posterous.com

Appendix 2: Case Studies

Case Studies

Case 5 is a Lebanese refugee with experience oftrauma, psychological stress, and physical and mentalhealth problems

Services involvedChapeltown Health CentrePAFRASMedical Foundation

SolaceAdult Psychological ServicesSt Georges Crypt

BackgroundCase 5 is from Lebanon and has refugee status and has been in the UK since2005. Case 5 was in prison in Lebanon for around four yearsand was a victimof torture. He witnessed the death of many friends when he was in the army,which he says haunts him still. He also experiences headaches as a result of aviolent attack in Leeds by racist peopleand is on a lot of medication. Hedescribes that he is like two different people and can have blank periodswhere he may have done things like got into a fight but has no memory ofthis; I see black because of too much stress.

Case 5 has Post Traumatic Stress Disorder (PTSD) and anger managementproblems and has found it difficult to manage his thoughts and feelings. Hehad been arrested on a number of occasions when he first arrived in Leeds,but as he has worked with services he has gradually developed effectivecoping mechanisms. The interview was difficult to piece together as Case 5struggled to remember dates when things occurred. He feels that he is oftendiscouraged from expressing himself, as he can be very passionate and loud

and he says that some workers have not liked this.

2005 2008Case 5 is prescribed medication for pain relief that he says is not working. Hesaid he discussed this with his GP at Chapeltown Health Centre but that hisGP did not listen. Although he reiterated these problems to GP two moretimes, he still felt ignored. He says he eventually collapsed and awoke inhospital with an Arabic doctor explaining he nearly died as a result of beingprescribed incorrect medication.

During this period he had many problems with inadequate housing thatexacerbated his asthma and his GP and Leeds city Council were unable to

arrange alternative accommodation.

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When NASS support was stopped, Case 5 was made homeless and he went toIreland. During this period he was in hospitalised again with physical healthproblems. After 3 asylum refusals in Ireland he returned to Leeds. He says hecannot understand why the Home Office (HO) is so unhelpful.

Case 5 describes both PAFRAS and St Georges Crypt as being a huge supportto him on his return, and that they enabled him to build up his social andemotional support network. Case 5 was volunteering at PAFRAS which he sayshelped him to give something back after all the support they have providedhim. In 2007 Case 5 was referred to Solace by PAFRAS, he was assessed andattended individual counselling sessions, complementary therapy andadvocacy support there until 2009.

Case 5 reports that after 2 attacks that happened in 2008 he could not speakfor a long time; he reported them to the police but he says they did nothing.Case 5 says that PAFRAS tried to help him to press charges but there was still

no action; he feels very angry and frustrated about this situation.

2009Solace referred Case 5 to Adult Psychological Services (APS) and he begantherapy there. Case 5 recalls that the Mental Health (MH) worker at PAFRASand doctor at APS referred him to the Medical Foundation in London, and areport was completed that influenced his asylum case. It was PAFRAS who co-ordinated this. He says it is difficult: he gets tired of talking about his past, hefeels scared by people as he is too stressed, and has flashbacks which makesit hard to talk about things. Case 5 doesnt know where he has been referredto and reports being asked a lot of details about his history over and overagain which he found very difficult and frustrating.

2010Case 5 got refugee status. He said that there was good communicationbetween Solace, Touchstone IAPT and APS, but then went on to describe anegative experience he had at APS. He said that he felt that a doctor therewas being racist towards him and he reported this to a worker at PAFRAS whoagreed that the doctor was not treating Case 5 well. He felt that the doctorwas talking to him like he was back in prison and under interrogation; a twohour questioning session. He reported a comment by the same doctor that ifhe was already receiving help from PAFRAS, why was he accessing theirservices?

He reports that Solace are great and he feels that there is a lot ofwraparound support offered and he feels relaxed when he goes there; Solacefor me now I look on as family. Case 5 was attending group therapy insteadof individual therapy as a transition before discharging and he is dischargedfrom Solace at the end of 2010.

2011Case 5 attended APS weekly and valued this service, but still found it difficultto talk about his past. APS re-referred Case 5 to Solace as they said did notknow what to do, or to engage with him due to his complex issues. Solaceagreed to work in partnership with APS to support Case 5. It was agreed that

APS would provide individual therapy and Solace would provide group therapyand advocacy support. This way of working appears to have worked well. He

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had access to interpreters at Solace and PAFRAS if he needed them, but oncehe had established a good relationship with them, he felt empowered totalking to workers in English. At APS he said that he always needed aninterpreter.Case 5 continued to receive anti-depressant medication fromChapeltown Health Centre.

Case 5 experienced problems with his neighbours whose behaviour had ahuge impact on his mental health. He feels that his home should be asanctuary but likens it to being a prisoner again tortured both physical andmentally.

2012The problem neighbour issues continue and he is trying to get re-housed withthe help of Solace and APS; he reports that he cannot sleep due to noise andis always frightened at home, which is difficult especially when he comeshome after therapeutic sessions and needs to relax.

Case 5 continues to access both Solace and APS and he enjoys the ExerciseMovement Group at Solace. It is hoped that there will be a planneddischarged from both services in autumn 2012.

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Case 6 is an Iranian refugee with experience oftrauma, psychiatric symptoms, suicidal ideation andphysical health issues.

Services involved

Bradford psychiatric hospitalSt Jamess hospitalAdult Psychological ServicesNewsam Centre

Leeds Asylum Seeker SupportNetwork (LASSN)Solace

BackgroundCase 6 came to the UK from Iran in 2009. Case 6 had a senior positionin a key government ministry, and when he tried to resign from thisposition his request was refused and he was imprisoned and placed in

solitary confinement for 2 years. He was subjected to torture leavinghim with scarring and severe damage to his back for which he hasundergone surgery in the UK and his home country.

Case 6 cannot recall the details of his arrival into the UK, which hestates is due to the high levels of painkillers he was taking at the time.

The physical and psychological torture experiences have had asignificant impact on PY in terms of suicidal ideation and physical andpsychological stress.

2009

Case 6 was put on the Solace waiting list in September 2009 but he isunclear of who referred him to this service. Case 6 is very confusedabout this time; he stated that when I came to this country I was atotally broken person. He attempted suicide on a number of occasionsand was admitted to a Psychiatric Hospital in Bradford in November2009. Case 6 acknowledged that the hospital intervention stopped himfrom taking his life but went onto describe that being in hospital madehis mental health (MH) issues worse than before. The medication hewas prescribed helped but he felt controlled and under investigationby the doctors and stated that the conditions in the hospital wereterrible and reminded him of being in prison again; I was not allowedfrom the corridor and that was horrible for me

2010Case 6 was discharged from Bradford Psychiatric Hospital in 2010 buthe is uncertain of exact dates. He describes 2010 as a time when hehad a lot of involvement with Adult Psychological Services (APS), St

James Hospital and Bradford Psychiatric Hospital. Case 6 describes thisas not a good experience; Ive seen many doctors not satisfactory...the doctors are right about me they believe the things that happenedto me cannot be removed or treated by the medication.

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Case 6 described a better experience with a psychiatrist he sawregularly at Newsam Centre; he was good and explained about themedication and the limits of the medication. When asked about hisexperience of talking treatments, case 6 described feeling so fearfulthat he could not express himself, how he wanted to, but felt that the

person in front of him would not be able to understand. I was fighting2 battles: the 1st I needed to prove to them that I was not a crazyperson; dont treat me like a crazy person and dont force me to go tohospital. And the 2nd was my illness which was very difficult.

Case 6 accessed his GP to initiate further treatment options for his backproblems as the pain relief was not working; however the GP failed toremember about his condition. Although he had been seeing case 6 fora long time, Case 6 felt that he didnt have a proper understanding orcare for his problemsso continued his medication.

2011By February 2011 Case 6 was working with a befriender from LeedsAsylum Seeker Support Network (LASSN) although he is unclear how heaccessed this service. LASSN referred him once again to Solace.

It seems that Case 6 was prioritised by Solace because of his previousreferral in 2009 and in April Solace assessed him, and one to onetherapy commenced. He explained that from most places he justreceived medication, but Solace treated all of his issues. I didnt tellthe truth, because by telling the doctors the truth it will satisfy them

but will destroy me... No one knows the whole truth about me, but myrelationship with Solace led to me sharing the majority of my story, andI felt more comfortable there than speaking to the doctors

Solace referred Case 6 to Adult Psychological Services (APS) and inAugust the one to one therapy at Solace ceased. In September Case 6had psychiatry assessment at APS. He is still accessing other supportfrom Solace; If it wasnt for Solace I would be laid in a cemetery

2012Case 6 continues to receive on-going support from Solace and stated

that they gave me the confidence to not feel like I was a crazy person.He has begun to engage with weekly acupuncture sessions there andso far he says the sessions are going ok and he has felt a veryimmediate pain relief. Case 6 does still struggle immensely with backpain and is taking 400 430 tablets a week for both pain relief and hisMH: he says that they do not seem to really help to relieve his pain,and this on-going pain significantly affects his MH. Case 6 sees aPsychiatrist every 2 months but more upon request at APS.

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Case 7 is a failed asylum seeker from Zimbabwe withexperience of psychological stress, family difficulties,and physical and mental health problems

Services involved

General PracticePAFRASRefugee Council

SolaceAdult Psychological ServicesSt Georges Crypt

BackgroundCase 7 is a failed asylum seeker from Zimbabwe awaiting an appeal decisionfrom the Home Office (HO). Case 7 lives in shared accommodation andattends a GP in her local area. She has 2 children and 2 grandchildren all ofwhom have status to live in UK; she tells me that she has no family who couldsupport or care for her back in her country of origin. Case 7 talks about thedeath of her parents and brother who died whilst she has been in the UK and

is upset that she could not retur

understanding how asylum seekers and refugees access and experience mental health support in leeds

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