Rachel Perkins BA, MPhil (Clinical Psychology), PhD, OBE - PowerPoint Presentation

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Rachel Perkins BA, MPhil (Clinical Psychology), PhD, OBESenior Consultant, UK Implementing Recovery through Organisational Change ProgrammeCo-editor Mental Health and Social Inclusion JournalMember of the UK Equality and Human Rights Commission Disability Committeerachel.e.perkins1@btinternet.com

Rebuilding Life with Mental Health Challenges

From Therapy to EducationSlide2

Let me begin by introducing myself ...Rachel Perkins BA, MPhil (Clinical Psychology), PhD, OBE 35 years working in mental health services: from Psychologist to Director

25 years involved in various UK Government advisory committees/rolesInternational consultancy work

Written 4 books and over 200 papers, articles and chapters

OBE for services to mental health 2010

Mind Champion of the year 2010Slide3

Let me begin by introducing myself ...Rachel E. Perkins, Mental Patient25 years with diagnosis of manic depression (bipolar disorder)6 inpatient admissions to psychiatric hospital7 courses of ECT

Long term psychiatric medication

What images does the word ‘mental patient’ conjure up?Slide4

Poor unfortunate – unable to make decisions for themselves – need to be looked after for their own good

‘Mad axe murderer’

–

dangerous, unpredictable - need to be looked after for everyone else’s

good

Social security scrounger

–

weak, needs to pull themselves together and stop sponging off the rest of

us

A burden

– to

individuals,

families, communities, tax payers, society Slide5

Traditional approach: mental health challenges are a clinical problem You need to

go

to the expert, get diagnosed, and get fixed

with treatment and therapy

You need care

and

containment

until/unless

you

get better

… and if you won’t accept care and treatment voluntarily, it will be forced on youSlide6

But mental health problems are not simply a clinical problem … they are a social and personal challengeThe big things: loss

of the things you value in life - jobs, homes, friends, prospects

The

little things:

people start treating you differently, avoid

you, stop believing what you say

Often

the biggest problem is what it means to have mental health problems in our society and all the stereotypes, prejudice and discrimination they carry with themSlide7

Too often, some of this prejudice exists in mental health servicesUK anti-discrimination campaign -‘Time to Change’ - shows many people experience negative attitudes in mental health services …The focus is on risk and problems - all the things you can’t doNarratives of ‘deficit and dysfunction’

Narratives of ‘risk and risk management’Narratives of despair - fading life chances …

‘

you’ll

never be able to …’

A clear ‘them’ and ‘us’ divide: separate toilets, cups, crockery for ‘staff’ and ‘patients’

“All I knew were the stereotypes I had seen on television or in the movies. To me, mental illness meant Dr Jekyll and Mr Hyde, psychopathic serial killers, loony bins, morons, schizos ... They were all I knew about mental illness, and what terrified me was that professionals were saying I was one of them.”

(Deegan, 1993

)Slide8

loss of a sense of who you are, loss of meaning and purpose in life, loss of position and status, loss of power and control, loss of hopes and dreamsToo often people become ‘I used to be’

people …cut

off from friends and family, the communities in which they live, the person they used to be

t

he identity of ‘mental patient’ eclipses all other roles and identities

With images like this

a diagnosis of mental health problems

represents

a devastating and life changing event … a kind of bereavement

“I felt hopeless, I was lost ...I thought it was the end of my world.”

(in Allen, 2010)Slide9

finding meaning in what has happenedfinding a new sense of self and purpose

discovering and using your own resources and resourcefulness

growing within and beyond what has happened to you

p

ursuing your dreams and aspirations

“Recovery is

“a way of living a satisfying, hopeful and contributing life even within the limitations caused by illness. ...

a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and roles.

Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.”

(Anthony 1993)

Everyone diagnosed with a mental health condition faces the challenge of recovering a satisfying

, hopeful and contributing lifeSlide10

Recovery is not restricted to mental health problemsEveryone experiences traumatic and life changing events like …the death or serious illness/injury of someone we loveredundancy, failing an important examthe end of a relationship

being the victim of crime or abuse … or being convicted of a crimefleeing war or persecution - having to seek asylum in another country

Every time something knocks the bottom out of our world we face the challenge of recovery:

accepting and overcoming

what has happened and

recovering a new sense of self and purpose Slide11

Recovery is not easy

It can feel like a journey into the unknown in the face of what can seem like insurmountable odds

It takes a lot of courage and many leaps of faith

It is understandable that many people

feel like giving up

“You have the wondrously terrifying task of becoming who you are called to be.…Your life and dreams may have been shattered – but from such ruins you can build a new life full of value and purpose.”

(Deegan, 1990)Slide12

There is no formula for recovery: everyone’s journey of recovery is different and deeply personalBut from people who have rebuilt their lives, three things are important:Hope - believing that a decent life is possible … and hope-inspiring relationships

Getting back into the driving seat of your life: taking back control over your life and destiny, your problems and the help you need to do

so

Opportunity

the chance to do the things you value, be more than a ‘mental patient’, be a valued part of your communitiesSlide13

‘Recovering a life’ not ‘recovering from an illness’

Recovery is not the same as ‘cure’

Rebuilding your life is not about ‘becoming normal’ -

does not mean that all problems have disappeared but you have worked out ways of living with them

Recovery is not a professional treatment or intervention

Mental health services cannot ‘make people recover’ - other people cannot rebuild your life for you.

They may be able to help you ...but at the bottom line you are the only person who can rebuild your life

Recovery is a Personal Journey of Discovery

“ Recovery in mental health is not about waiting for the storm to be over. It is about learning to dance in the rain.”

Peer Recovery Trainer, CNWL London Recovery College

Slide14

Mental health services cannot make people recover ... but they can provide a fertile ground in which people can grow

Hopeful

, empowering environments that enable people to discover their possibilities and pursue their ambitions

“we are learning that the

environment around

people must change if we are to be expected to grow into the fullness of the person who, like a small seed, is waiting to emerge from within each of us ...

How

do we create hope filled,

humanized environments

and relationships in which people can grow

?”

(Deegan, 1996)Slide15

Treatment, therapy and the expertise of professionals may be part of the story BUT

Getting rid of problems does not automatically mean that people can rebuild their lives

: treatment doesn’t get you a job, friends, a home

.

In the UK, the last two decades have seen greatly increased access to treatment and therapy

: Early Intervention Teams, Assertive Outreach, Psychological Therapy in Primary Care …

But at the same time …Slide16

Unemployment rates have risen - people with a diagnosis of mental health problems have lower employment rates than any other group of disabled people (86.5%)The proportion receiving incapacity benefits because of a mental health condition has risen from 33% in 2000 to 43% in 2014More likely to be

socially isolated, living alone, living in temporary accommodation/homeless and face barriers in education than other disabled people

(Office for Disability Issues, 2013; Department of Work and Pensions, 2013; Department of Health 2013)

88% report experiencing negative discrimination

and

72% feel they have to conceal their mental health condition

for fear of prejudice and negative discrimination

(Corker et al, 2013)Slide17

Many (if not most) mental health problems fluctuate

and some people face cognitive and emotional impairments that are ongoing … so we need to think beyond treatment if we are to enable people to rebuild their lives

Treatment can’t cure the prejudice and discrimination

that prevent you working, participating in community life, getting a mortgage, getting insurance ...

A focus on expert professional treatment may (albeit unwittingly)

perpetuate exclusion

in a kind of vicious

cycle:

(see O’Hagan, 2007)

People with mental health problems believe that experts hold the key to our difficulties

Our colleagues, employers, nearest and dearest believe we are unsafe in their untrained hands

And we all become less and less used to finding our own solutions and embracing distress as a part of ordinary life Slide18

And promoting a biomedical understanding of mental health problems increases prejudice and exclusion‘Mental illness is an illness like any other’the key message of many anti-discrimination campaigns (e.g. World Psychiatric Association 2002)such campaigns have been successful

(e.g. UK ‘Attitudes to Mental Illness Survey’ found the rate of people endorsing ‘mental illness is an illness like any other’ statement rose significantly from between 1994 and 2010 to 77%)

The Assumption:

If mental disorders are attributed to factors outside the person’s control then reactions to people with such disorders will be less negative.

The Reality:

Biomedical explanations are associated with:

Perceptions of dangerousness and unpredictability

Fear of the person

Desire for social distance (especially close contact like dating, marriage, having children)(see Sayce, 2000; Phelan, 2005; Read et al, 2006; Pescosolido et al, 2010) Slide19

A clinical approach focusing on getting rid of problems by providing expert diagnosis, treatment and therapy has not been very effective at promoting the recovery of people diagnosed with mental health conditions

It has not

been very effective in enabling people to rebuild meaningful satisfying and contributing lives

It has not

been very effective in enabling people to participate as equal citizens in all facets of community life

We have not been very good at creating “hope

filled, humanized environments and relationships in which people can

grow”

(Deegan, 1996

)

We need a different approach …Slide20

First, we need a redefinition of the purpose of mental health services:from eliminating symptoms and problems to rebuilding lives

“Recovery requires reframing the treatment enterprise…the issue is what role treatment

[and support]

plays in recovery.”

(Davidson et al, 2006)

We

need to evaluate

what services do

differently :

not ‘do they decrease symptoms and problems’ but ‘do they enable people to do the things they want to do and live the life they want to lead’ - access jobs, homes, friends, social, educational, spiritual opportunitiesSlide21

Second, we need a different sort of relationship between services and the individuals and communities they serveTraditional services: one set of expertise Assumed that the expert professional has access to a body of knowledge that cannot be understood by non-experts

Therefore it is mental health worker’s job to tell them what is wrong with them and what they should do ... and get them to comply with/adhere to their prescriptions

Recovery – focused services: two sets of expertise

Experts by profession, qualification and degrees – expertise based on professional research and theories

Experts by lived experience – expertise based on personal experience and personal narratives

Professionals are not necessarily experts in rebuilding a good life with mental health challenges

…

often

the lived experience of those who have ‘been there themselves’ - people who are rebuilding their lives with mental health challenges - is more

useful:often peers are best placed to foster hope, offer images of possibility and help people to find the courage to keep going and find their own value and purpose in lifeSlide22

Creating recovery-focused services requires that we

Recognise and value the

expertise of lived experience

Enable people to access the expertise of lived experience as well as the expertise of professionals

Use our professional expertise differently …

Mental health professionals ‘on tap’ not ‘on top’

:

Putting our knowledge and expertise at the disposal of those who may wish to make use of it rather than telling people what to do

Supporting self-management rather than fixing people

- helping people to discover and use their own resources and resourcefulness

“Over the years I have learned different ways of helping myself. Sometimes I use medications, therapy, self-help and mutual support groups, friends, my relationship with God, work, exercise, spending time in nature – all of these measures help me remain whole and healthy.”

(

Deegan, 1993)Slide23

This may involve many things but one of the particularly powerful developments that is proving effective in the UK is moving from an approach based on treatment and therapy to an approach based on education and the creation of Recovery CollegesSlide24

The development of an idea:A visit to Recovery Innovations, Phoenix Arizona in 2008…The core of this service wasn’t a clinic but a Recovery Education CentreIt was an

environment filled with hope and possibility where people could grow and develop: it had a buzz of enthusiasm and an

air of positivity and possibility

It really

broke down the traditional divides between ‘them’ and ‘us

’: people

with mental health conditions were not only the students there, they were also the trainers

.

Goal of the service:

“People will discover who they are, learn skills and tools to promote recovery, find out what they can be, and realise the unique contribution they have to offer.”“We decided to use education as the model for promoting recovery, rather than develop more traditional treatment alternatives. We did this because we wanted our center to be about reinforcing and developing people’s strengths rather than adding to the attention on what is wrong with them.” (Ashcraft, 2000)Slide25

The development of an idea:Developing a Recovery Education Centre in a UK contextWe could extend what they were doing AND make it available to people at every stage of their journey … and their friends, relatives, staff, people in the community … everyone could learn togetherCombine Recovery Innovations ideas with work we had done in

UK around ‘expert patient programmes’, ‘self-management programmes’, anxiety management courses, hearing voices programmes …

Recovery innovations: a small service by UK standards– only about 300 people used it in total.

It only took people who had been in services for some time

Limited range of courses: focused largely on ‘Wellness Recovery Action Planning’,

and

training ‘Peer Support Workers’

But what about the name - Recovery Education Centre?

Consumers in UK liked the ideas … and developed them even further.

But what is an ‘Education Centre’

“it sounds like another day centre” … what you are talking about is a

College.”Slide26

First UK Recovery College - South West London:

Pilot: Summer 2009

Recovery College opened in 2010

In the first year 1400 students attended courses

50 courses

a core staff of: 1 administrator, 1 manager, 4 mental health practitioners, 4 peer trainers PLUS associate, sessional, peer and staff trainers

2015: 30 Recovery Colleges in the UK … more in the process of development

And in other parts of the world … including Australia:

New South Wales

MelbourneSlide27

VideoCentral and North West London Foundation Trust Recovery CollegeSlide28

1. Based on co-production

– brings together the expertise of lived and professional experience on equal terms

Initial planning and development

Decisions about operation

Curriculum design

Development of courses, seminars and workshops

Co-delivery of

training

2. It is for everyone

– service users, people close to them and staff, people outside the mental health system learn together:

the ethos of the College is that it is open to everyone

People with mental health problems Families, friends and carers

People from different mental health agenciesPeople from local communities

No single model but 8 defining features of a Recovery College(See Perkins et al 2012 Centre for Mental Health Briefing Paper on Recovery Colleges)http://www.centreformentalhealth.org.uk/pdfs/Recovery_Colleges.pdf Slide29

4. It operates on college principlesDoes not offer treatment or care co-ordinationNo referral: students select courses from a prospectusNo selection on the basis of diagnosis or clinical condition

No assessment of suitability to attend - no ‘risk assessments’ – if a person is able to leave the ward they are able to come to the college

A ‘student charter’ describes what students can expect to gain and what the College expects in terms of attendance and behaviour

3. There is a physical base – a building with classrooms and a library where people can do their own research

Often ‘satellite courses’ in different locations to facilitate

access: ‘hub and spoke’ approach

Recovery Library contains recovery materials (including self-help materials, personal stories, DVDs, information about different sorts of

treatment/therapy

, computers for people to access internet resources) - not a substitute for the local library.

Enables people to come and see what is available before ‘taking the plunge’ of registering for coursesSlide30

6. There is a Personal Tutor (or equivalent)Offers information, advice and guidanceHelps people to select coursesHelps people to develop a learning plan based on their hopes, aspirations, interests and wishes

5. It reflects recovery principles in all aspects of its culture and aspiration

A physical environment that conveys messages of hope, possibility and empowerment

Recovery language that highlights strengths and possibilities not deficits, problems and shortcomings

Success is celebrated – both with students (e.g. Certificates of achievement) and in working practices of staffSlide31

7. Not a substitute for specific, technical assessment and treatment/therapy Replaces and extends what is currently done in ‘groups’ , ‘individual work’ , ‘psycho-education’Provides information to assist people to develop skills and make informed choices

Helps people to understand their problems and manage these better in order to pursue their aspirations

Blends expertise of lived and professional experience

8. Not

a substitute for mainstream colleges

May

run ‘return to study’ courses to facilitate access to mainstream education and training

opportunities

As well as mental health practitioners and people with lived experience, tutors come in from outside e.g. colleges, housing associations, employment services, policeSlide32

Types of courses that may be offered

1. Understanding mental health options and treatment options – often single sessions offering

Introduction to specific challenges e.g. psychosis, depression, self-harm, substance misuse, dementia, eating disorders ...

Information about range of treatment options e.g. different sorts of psychological therapy and medication

Participative, discovery style learning not just ‘chalk and talk’ lectures

Students explore together and learn from each other – everyone is an ‘expert’, not just the

trainersSlide33

2. Rebuilding life with mental health challenges – ranging from one day introductions to recovery to longer courses Telling your storyPlanning your own recovery and looking after yourself (e.g. WRAP, Personal Recovery and Well-being Plans) Self-management programmes for specific conditions (e.g. living with bipolar disorder, coping with depression, anxiety management)Looking after physical health and well-being (e.g. healthy eating, diet, exercise)

Addressing particular challenges (e.g. getting a good night’s sleep, anger management, becoming more assertive)

Other popular courses include ‘life coaching and goal setting for recovery’, ‘mindfulness’, ‘pursuing your dreams and ambitions and ‘spirituality and mental health’Slide34

3. Developing skills – courses, seminars and workshops that fall broadly into two categories

Courses to assist people to rebuild life outside services (e.g. Managing a tenancy, looking after your personal safety, returning to work or study, getting e-connected)

Courses that help people to get the most out of services (e.g. Getting the best from your ward round or care review, understanding the mental health act and mental health review tribunals, making a complaint)

4. Capacity building among the peer workforce – courses to drive changes across the service by training

Peer Support Workers

Peer Trainers

Sitting on committees, being part of staff selectionSlide35

5. Family and friendsFamily and friends can attend any courses, but some specifically address the challenges faced by those providing care and support for family and friends with mental health problemsOften attended by individual and their relatives/friends so family can learn togetherBut there is no prescribed set of courses …

within the 9 Recovery College Principles the curriculum of courses in each Recovery College developed in an ongoing process of co-production between Peer and Mental Health Practitioner Trainers and Students

All Colleges have started small - with a few courses (maybe 8-9) using any premises they can get …

but they have had to grow because of the demandSlide36

Values of a Recovery College – Fidelity Criteria:(Nottingham Recovery College)Educational:Recovery focused knowledge/understanding, coping strategies and skills, application of learning are facilitated through Recovery focused curriculum and facilitative relationships.

Collaborative:Lived, life, professional and subject expertise and experience are brought together in co-production, co-delivery/facilitation and co-learning.

Strengths based:

For all students and staff, achievements, strengths, skills and qualities are identified, built upon and rewarded. Adjustments and supports are put

in place

to overcome challenges. Slide37

Person-centred:Students come of their own volition, work towards their personal goals, ambitions and dreams at their own pace. They choose the courses they wish to study and identify the supports they find helpful. Progressive:Students work towards goals, and/or to overcome personal challenges. Courses and support are agreed through an individual learning plan which is regularly reviewed.

Community focused:

The college is community facing with active engagement with community organisations and FE colleges to co-produce relevant courses and facilitate pathways into valued roles, relationships and activities.

Inclusive:

The college offers learning opportunities to students of all abilities, cultures, ages and experiences. A sound differentiation policy ensures that everyone has equal access to learning and the contribution that everyone can make is recognised and valued. Slide38

Changing the relationship between services and those whom they serveThe transformative power of a Recovery College

Brings together the expertise of lived experience and the expertise of mental health practitioners on equal terms:

peer and mental health practitioner trainers employed on equal terms

Recognises

and actively values

professional expertise and the expertise of lived experience on

equal terms:

in

a process of

co-production

Professionals use their expertise in a different way:

‘on tap’ not ‘on top’ – sharing their expertise with those who may value it rather than prescribing what is good for people

Provides peer support from both peer trainers and fellow

students and offers images of possibility – what people with mental health conditions can achieve – to students (mental health practitioners, people with mental health challenges , their relatives and friends and a broader community)Slide39

Breaks down ‘them’ and ‘us’ barriers that divide ‘staff’ from ‘patients’ and perpetuate stigmaBreaks down barriers and changes the relationship between services and communities and fosters community integration

People from local organisations involved in providing courses

People can attend courses that help them to develop the knowledge and skills they need to return to work, study and participate in community life

Individuals and their relatives and friends

and members

of the local

community

can learn

together

Contributes to the creation of inclusive communities that can accommodate all of us

Enables

people to become experts in their own self-care and develop the skills they need for living and workingAffords choice, control and self-determination - students not passive recipients of the prescriptions of experts Slide40

An evidence based intervention?

A Recovery College brings together

a range of evidence based interventions

Evidence of the effectiveness of an educational approach in improving self-management

(Meuser et al, 2006; Husser-Ohayon et al, 2007; Lawn et al, 2006

; Foster et al,

2009;

Salyers

et al

, 2011; Cook et al, 2011)Evidence of the value of peer support

(Repper and Carter, 2011)Evidence of the value of choice and control (NICE, 2011)

Emerging outcomes from Recovery Colleges

Increased hopefulness

Improved wellbeing, self management, reduced crises and

reduced service

use

Increased social

inclusion

:

significant improvements in friendships, social support, social roles, social networks

70% students who complete courses go on to mainstream education, employment or

volunteeringSlide41

Several Recovery Colleges have found that, after attending the College, people’s use of mental health services decreases (Rinaldi et al, 2010; Brown, 2013; Meddings et al 2014; CNWL, 2014)In South West Yorkshire they have evaluated the financial impact of the Barnsley Recovery College

in terms of reduced the use of other mental health services:Data on a consecutive series of 40 people attending the Recovery College:

6 months BEFORE attending Recovery College

cost of support from health and social care staff =

£11,205

6 months AFTER attending Recovery College

cost of support from health and social care staff =

£3,757

Total saving of

£7,448 in 6 months = £186 per person = 66% reduction in cost (After attending the Recovery College 21 people did not require any ongoing support)And Recovery Colleges are extremely popular among those who use them …In the UK, desire to reduce our national deficit following the recession means that money is short … therefore the questions about

cost savings resulting from a Recovery College have been askedSlide42

People who work in and study at Recovery Colleges report seeing little miracles every day“I can’t believe what you have done for my son. I used to have to push him out of the door and he would cover his face. Now he goes out with his head held high.”

“When I first came to the college I couldn’t even see the tunnel … now I see the tunnel and the light at the end of it.”

“I have discovered ... a wonderful, helpful and hopeful place that I know will be of tremendous help to me in moving forwards in my life.”

“I have moved further in my recovery in one term here than in the past two years in the team.”

“My brother said how good it was to talk and book on courses and that the more he talks about what he has been through, the more insight he gets. Those were his very words which is really encouraging.”

“It’s like the sun coming out to go into the Recovery College … it’s a wonderful proclamation of service users (and carers) being of value.”

“Meeting others who share similar experiences has made me realise there might be a way out.”

“It has refocused me on what is important in life and how to cope.”

“It has given me hope and direction.”

“I am not ashamed of my illness any more.”

“It is life-changing.”Slide43

VideoSussex Recovery College A partnership between Sussex Partnership NHS Foundation Trust and two NGOs: Mind in Brighton and Hove and Activ8 in HastingsSlide44

Perkins et al (2012) Recovery Colleges, ImROC Briefing paper, London Centre: Centre for Mental Health/NHS Confederation http://www.imroc.org/wp-content/uploads/1.Recovery-Colleges.pdf

Videos of Recovery Colleges:

South West London

https://www.youtube.com/watch?v=VSOeQbkMVqc

Central and North West London

https://www.youtube.com/watch?v=lOMoohO86EE

Sussex

https://www.youtube.com/watch?v=QFc_9nZNy_k

Cambridge https://www.youtube.com/watch?v=l6cV9DvTk_E#t=28

Questions, discussion …