Recovery:

A journey of discovery

for individuals and

organisations

Rachel Perkins BA, MPhil (Clinical Psychology), PhD, OBE

Senior Consultant, UK Implementing Recovery through Organisational

Change Programme

Co-editor Mental Health and Social Inclusion Journal

Deputy Chair of the UK Equality and Human Rights Commission

Disability Committee

17th November 2016

• Over 30 years working in UK NHS mental health services ... from

clinical psychologist to director

• Over 20 years in various UK government and national advisory

committees (including leading an independent review to Government on

employment support for people with mental health conditions)

• 5 years as founder member and senior consultant with UK

‘Implementing Recovery through Organisational Change’ programme (designed to help NHS organisations and their partners to develop more recovery-

focused services)

• Over 25 years being on the receiving end of mental health services (inpatient and outpatient)

A view from 4 perspectives

A kind of bereavement:

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 dreams

Too often people become ‘I used to be’ people … alienated and disconnected from friends and family, the communities in

which you live, the person you used to be

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

The challenge of mental

health problems To be diagnosed with mental health problems is a

devastating and life changing event

“I felt hopeless, I was lost ...I thought it was the end

of my world.” (in Allen, 2010)

Traditional approach: mental health challenges are

a clinical problem

You need to

go to the experts, get

diagnosed, get treated,

get fixed with treatment

and therapy

But mental health problems are not simply a

clinical problem … they are a social and

personal challenge

In the face of images like these within and outside services the idea of having a ‘mental illness’ is terrifying

• The 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 challenge is what it means to have mental health

problems in our society and all the stereotypes, prejudice and

discrimination they carry with them

Popular stereotypes of people with a diagnosis of mental

health problems:

‘The poor unfortunate’ unable to make decisions for

themselves – need to be looked after for their own good

The ‘mad axe murderer’ dangerous, unpredictable -

need to be looked after for everyone else’s good

The ‘social security scrounger’ weak, need to pull

themselves together and stop sponging off the rest of us

‘A burden’ on families, communities, tax payers, society

Too often, some of this prejudice spills over into mental health services

UK 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 do

Narratives of ‘deficit and dysfunction’

Narratives of ‘risk and risk management’

Narratives of despair - fading life chances … ‘you’ll never be able to …’

A clear divide between ‘them’ and ‘us’: 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)

‘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, 1993)

Everyone diagnosed with a mental

health condition faces the challenge

of

recovering a satisfying,

hopeful and contributing

life

“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)

Recovering a satisfying, hopeful and contributing

life … a personal journey of discovery

• finding meaning in what has

happened

• finding a new sense of self and

purpose

• discovering and using your own

resources and resourcefulness

• growing within and beyond what

has happened to you

• pursuing your aspirations and

dreams

“The recovery process is a

deeply personal process that

includes two key

developmental tasks: the

struggle for meaning and the

reconstruction of a positive

identity.” (Pettie &Triolo, 1999)

• Discovering who you are and

what you can become

• Discovering your talents and

possibilities and what is

important to you

Recovery is a personal journey, but it is not

a journey travelled alone

It is a journey travelled in the context of a family, a social network, a community , a culture, a place …

• The meaning of mental health challenges has to be understood in the context of the person’s family, social network, community and culture

• The resources and possibilities for rebuilding a meaningful, valued and satisfying life must be understood in the context of the person’s family, social network, community and culture

• People close to the person also face the challenge of recovery. Relatives and friends also face the challenge of growing within and beyond what has happened.

Relatives and friends face two challenges of recovery: helping the person they love in their journey and recovering and rebuilding their own lives.

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

• Recovery is not the same as ‘cure’

Rebuilding your life does not require 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 professionals and services cannot ‘make

people recover’ … but we can help to create the hope

inspiring relationships and environments in which people

can grow

Recovery is not restricted to mental health

problems

Everyone, at some time in their life, experiences traumatic and life

changing events like …

• longer term physical health problems and impairments

• the death or serious illness/injury of someone we love

• redundancy, failing an important exam

• the end of a relationship

• being the victim of crime or abuse … or being convicted of a crime

• fleeing 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

There is no formula for recovery - each person must find

their own way - but three things seem to be particularly

important

Hope Believing that a decent life is possible - and

hope inspiring relationships

Control and self-

determination Taking back control over your

life and destiny, the challenges

you face and the help you

receive

Opportunity and citizenship The opportunity to do the things you value and

participate as an equal citizen … the chance to

contribute to your community rather than

always being on the receiving end of help and

support

(See for example, Anthony, 1993; Repper and Perkins, 2003; Shepherd et al, 2007; Perkins and Slade 2012; Perkins and Repper 2012)

So what helps people in their journey

of recovery?

Recovery: The

challenge for

professionals and

services

Creating services that better support people in their

journey of recovery is not just about adding another

‘team’ or ‘intervention’ to our ‘repertoire’ - it requires

fundamental changes in culture and practice

• A redefinition of ‘why are we here?’ the overarching purpose of our

services

• Fostering hope and helping people in their quest for meaning

• A different relationship between services and the people they

serve: helping people to take back control

• A different relationship between services and communities:

helping people to explore their possibilities, access opportunities they

value and contribute to their communities

If services are to help people in their

journey of recovery then we need to

move from a primary focus on

‘treatment’ and ‘cure’ - getting rid of

problems - to a primary focus on

rebuilding lives

Treatment and therapy may be important -

reducing distressing and disabling symptoms is a

good thing BUT

we must think about everything that we do -

assessment, treatment, therapy, support -

differently

not ‘does it decrease deficits and dysfunctions’ but

‘does it 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 opportunities ....

“Recovery requires

reframing the

treatment

enterprise…the issue

is what role treatment

[and support] plays in

recovery.” (Davidson et al, 2006)

Expert professional treatment may be

helpful, but it is not enough

Getting rid of problems does not automatically mean that

people can rebuild their lives: treatment doesn’t get you a

job, friends, a home, make you part of your community …

• Over the last 20 years in the UK we have seen greatly

increased access to treatment and therapy:

psychological therapy in primary care, early intervention

teams, assertive outreach teams, crisis and home

treatment teams

• But at the same time, social exclusion continues

unabated. People with mental health conditions are

o less likely to be in employment

o more likely to be receiving incapacity benefits

o more likely to be socially isolated and living alone

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

Fostering hope and

supporting people in

their quest for meaning

• A hope inspiring environment: what messages does the service

environment convey about the possibilities for life with a mental health problem -

challenging myths (e.g. famous people with mental health problems, quotes,

recovery stories …)

• Hope inspiring language: language matters! – Language that recognises strengths and possibilities - ‘what’s strong’ rather

than ‘what’s wrong’ (lacking motivation, attention seeking, non-compliant,

dysfunctional family …)

– Language that empowers people - helps people to make their own

decisions rather than telling them what to do (‘you must’, ‘you should’, ‘my

advice to you is’ …)

• Hope inspiring relationships …

Relationships are central to hope It is difficult to believe in yourself if everyone around you

thinks you will never amount to very much

When you find it hard to believe in yourself and your

possibilities you need others to believe in you – hold on

to hope for you

We all need • People who understand how things look from where we sit

• People who appreciate the devastating impact of what has happened

• People who are prepared to be with us in our distress

• People who value us for who and what we are

• People who believe in our possibilities and worth

• People who really listen

• People who accept and understand our experiences

• People who can help us to get through set-backs and disappointments … learn from

them, grow stronger because of them

“It is important to have someone listen to you, and know that, even though you may not see

it at the beginning, you can recover and lead a fruitful life after schizophrenia.” (Allen,

2010)

Breaking down the ‘them’ and ‘us’ divide

We cannot truly promote the recovery of those

whom we serve unless we can reach across the

divide between ‘them’ and ‘us’ ...

Erode the boundaries that we have erected in society

and services between ‘the mad’ and ‘the sane’ between

‘user/consumers’ and ‘staff’

• Some barriers are very material (separate cups,

separate toilets)

• But many of the barriers are the boundaries we

set in relationships … ‘be professional’, ‘don’t tell

anything of yourself’

Breaking down boundaries - creating relationships

that recognise our common humanity - staff sharing

something of their own lives: not ‘dumping their

problems on the person’ but being human!

See, for example,

Safe Wards - ‘Know Each Other’

http://www.safewards.net/interventio

ns/know-each-other

Dorset Recovery and Wellbeing

Partnership

http://www.dorsetmentalhealthforum.

org.uk/pdfs/other/supporting-staff-

recovery.pdf

Hope and the quest for meaning and value ...

Why? Why me? What’s the point?

• Spirituality. The quest for meaning lies not in psychiatry or psychology but in spirituality or

philosophy - having the opportunity to reflect on the ideas you value and the experiences that

have shaped your life

• Story telling. Human beings are story-telling creatures

– Reclaiming our stories is important in rebuilding our lives

– We know ourselves through the stories we tell about our lives - and when traumatic events

befall us we have to retell our stories

– We connect with other people by sharing our stories

– We understand our possibilities by hearing what others who have been in a similar position

have achieved

“Real life stories ... are nutritious and sustaining. They feed the mind with information and the

heart with hope and strength.” (Phillip Pullman, 2006)

Personal narratives form the basis of understandings of recovery and of recovery-

focused services

Peer support

– Helps you feel less alone

– Offers support from someone who understands what you are going through

– Allows you to share experiences and different ways of understanding what has

happened

– Helps you to work out ways of dealing with problems

– Fosters hope and images of possibility

– Give you courage to keep going when things get tough

– Helps you to use your experience to help others facing similar challenges

• Peer support. Many people have

found that some of the most important

relationships that help them in their

journey of recovery are with people

who have walked a similar path and

faced similar challenges.

A different relationship

between services and the

people they serve: helping

people to take back

control

Recovery is about self-determination - taking

back control getting back into the driving seat of your life

“Recovery means I try to stay in the driver’s seat of my life. I don’t let my illness run me.

Over the years I have worked hard to become an expert in my own self-care” (Deegan, 1993)

Control over:

• Your life and destiny

Finding purpose and direction in life – deciding what is important to you (not

what everyone else tells us to do) – defining our own dreams and ambitions

• Your problems

Becoming an expert in your own self-care and working out ways of managing

your problems so they do not get in the way of you pursuing your goals

• The help you receive

Deciding what sort of help and support you need in order to pursue your

ambitions

• Your own journey of recovery

Deciding how you are going to use your own resources and the help and

support available to you to pursue your dreams and ambitions

Traditional services: one set of experts • The expert professionals and the patients/clients/users:

‘them’ and ‘us’

• Therefore it is professionals’ job to tell people what is wrong

with them and what they should do to put it right ... and get

them to comply with these prescriptions

Recovery–focused services: two sets of

experts • 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 don’t have all the answers!

Creating recovery-focused services requires

that we – Recognise, value and use the expertise of lived experience

– Use our professional expertise differently

• 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

• Genuine shared decision making at an individual level and co-production in the design

and delivery of services

• Supporting self-management rather than fixing people - helping people to discover and

use their own resources and resourcefulness

• Enabling people to access not only professional expertise, but also the expertise of

lived experience

“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)

Mental health

professionals ‘on tap’

not ‘on top’:

What might this look like in practice?

• An ‘educational/coaching’ approach rather than a ‘therapeutic’

approach’ - focusing on growth and development

Focusing on helping people to decide what they want to achieve, identify their own

strengths and resources, learn new skills, discover their possibilities … rather than telling

them what is good for them and what they should do: seminars, workshops, courses …

Recovery Colleges

• A different approach to information

Helping people to do their own research and gain insights from others who have faced

similar challenges

• A different approach to risk

From ‘risk management’ to co-produced safety planning and shared responsibility for safety:

o understanding threats to safety from everyone’s perspective: and using everyone’s

insight and expertise to produce a safety plan - the individual, those close to

him/her, professionals

o sharing responsibility for safety: what the person can do, what staff can do to help

• A different approach to record keeping

Shared entries in notes and self-held notes

• Self-directed support and individual budgets:

Personal social care budgets, personal health budgets – control with money attached!

• Helping people to develop their own Personal Recovery and Well-

being Plans/Wellness Recovery Action Plans (WRAP)

Focused on how they can pursue their aspirations and manage challenges they face

• Person centred care/support plans supporting the person’s own health

and well-being/WRAP plan

• Focused on a person enabling people to pursue their ambitions

• Identifying smaller goals towards achieving these ends

• Identifying personal resources and barriers … and how support will assist the person to

get around these

(see Tondora, J. et al Partnering for Recovery in Mental Health. A practical guide to person-centred planning,

Chichester: Wiley Blackwell)

What a Personal Recovery and Well-being Plan might

contain Plans for keeping on an even keel

• The things you need to do every day or every week to keep

yourself on an even keel

• What you can do when you feel upset, anxious, angry,

disheatened, hopeless (a kind of mental health ‘first aid kit’)

• The things that happen that upset you, or make you angry, or

fed up, or stessed out ... and what you can do to stop them

getting to you too much

.

Plans for managing your ups and downs • What to do when you are having an off day

• What to do when everything is getting too much for you

• Plans for getting back on track after a set-back or crisis

Plans for pursuing your dreams and ambitions - big dreams, small achievable steps to move towards them

And at a service level …

moving from ‘user

involvement’ to ‘co-

production’

The challenge moving

forward ‘doing with’

Recognising each other’s

expertise and designing and

delivering services together

Traditionally ‘doing to’

Telling people what is best for them

and what they should do

Then moved on to ‘doing for’

Informing people what would

happen, consulting them on their

views, engaging them in decisions

… but essentially involving ‘them’

in ‘our’ services (and often a great

deal of tokenism)

“Co-production ...is not the same as consultation or the types of tokenistic participation of people

who use services and their carers which do not result in meaningful power-sharing or change.”

“Co-production means designing and delivering public services in an equal and reciprocal

relationship between professionals, people using services, their families and their neighbours.

Where activities are co-produced in this way, both services and neighbourhoods become far

more effective agents of change.” See http://www.nesta.org.uk/publications/co-production-catalogue, http://www.neweconomics.org/publications/entry/co-production; Needham, C (2009) SCIE Research briefing 31: Co-production: an emerging evidence base for adult social care transformation

“Co-production goes well beyond user involvement ... It promotes equal partnership

between service workers and those intended to benefit from their services –

pooling different kinds of knowledge and skill, and working together.”

Co-production is about

• recognising people as assets and building on their strengths: transforming

people who use services from ‘passive recipients’ and ‘burdens’ on the system to

assets.

• equal partnership between workers in services and those who use their services:

pooling different kinds of knowledge and skill, and working together

• designing AND delivering services in partnership between professionals,

people using services, people who are important to them and local communities

A different relationship

between services and

communities:

helping people to

explore their

possibilities, access

opportunities they

value You cannot rebuild your life if you

we are unable to do the things we

value

• Having access to the opportunities

that exist in our communities

• Being a part of those communities

• Being a valued member of those

communities

• Having the opportunity to

contribute to those

communities: do things for other

people

Always being on the receiving end of

help is a dispiriting place to be - we

feel good about ourselves when we

are able to do things for others and

contribute.

Opportunity and participation are central to recovery: without the chance to do the

things that you value you cannot rebuild your life

With each crisis people tend to lose more and more valued roles and activities … the

role of ‘mental patient’ replaces all other valued roles

Helping people to hang on to what they have already got

• Finding out about a person’s valued roles and responsibilities

• Enabling people to sustain valued roles through a crisis

• Gradually resuming roles as soon as you are able (you don’t have to be fully well/

leave hospital to start doing things again)

But recovery is not just about hanging on to what you have got - it

is about growing, pursuing your dreams and ambitions

A crisis offers an opportunity to re-evaluate - work out what is important to you - explore

new possibilities

A central role of services must be to actively help people to explore

what they want to do and access education, employment, social

activities, roles within their communities

There are two ways of thinking about enabling a

person to participate access the opportunities they value and be equal citizens in their communities

• The clinical approach: focuses on promoting

inclusion by changing the person so they ‘fit

in’ via treatment, therapy, confidence building,

skills training …

• The social approach (adopted in the broader

disability world): focus on changing the world

so it can accommodate everyone

e.g. if you have a broken spine, focus not on making you able

to walk again but on support and adjustments you need to

be able to live a full and contributing life (wheel chair, ramps,

lower work surfaces etc.)

What support and adjustments might someone with mental

health challenges need?

If we are to improve the life chances of

people with mental health problems then we

need to create communities that can

accommodate all of us

"Inclusion and citizenship are not about ‘becoming normal’ but

creating inclusive communities that can accommodate all of us.

Not about ‘becoming independent’ but having the right to

support and adjustments (in line with our choices and

aspirations) to ensure full and equal participation and

citizenship” (Perkins and Amering , in Slade et al, 2013)

Instead of asking what is wrong with the person

• What does the person value/want to do with their

life?

• What are the barriers that prevent participation?

(social, cultural, physical, assumptions, attitudes)

• How can we get around these barriers?

Providing support, making adjustments, changing

expectations, breaking down prejudice, changing

attitudes

• How can people assert their rights?

Rights under equalities legislation and the United

Nations Convention on the Rights of Persons with

Disabilities: the right to both the same opportunities

as other citizens (at home, at work and as members

of the community) and the support and adjustments

people need to participate

To start to do this we need to ask different questions…

We need to think beyond ‘service land’:

• Recognise the resources available within communities:

communities are an ocean of opportunity

• Support individuals and organisations/individuals in the

community: helping people to access opportunities they value and

participate as equal citizens (in families/intimate relationships,

workplaces, colleges, faith communities, social and leisure activities …)

is about supporting a relationship

Think about different sorts of

communities: not one community but

many

• Geographical communities

• E-communities

• Communities of identification

• Communities of interest

Recovery is a daunting

task for people living

with mental health

challenges

Both are journeys into the unknown

in the face of what can seem like

insurmountable odds

Both takes a lot of courage

and many leaps of faith

It is understandable that

many people give up

Creating more recovery

focused services is a

daunting task for mental

health workers

There is no ‘blue-print’ we

can follow

We are all on a journey of

discovery together mental health practitioners, people facing mental

health challenges, their families, friends, neighbours

and communities

We must be prepared to take risks and we must

raise our expectations ...

Probably the greatest barrier to recovery, to creating

more recovery focused services, to creating inclusive

communities is low expectations

“The greater danger for most of us lies not in setting our aim too

high and falling short, but in setting our aim too low and

achieving our mark.” Michelangelo