Transcript From Therapy to Education without embedded videos

Rebuilding Life with
Mental Health
Challenges
From Therapy to
Education
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
Member of the UK Equality and Human Rights Commission Disability Committee
[email protected]
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/roles
 International consultancy work
 Written 4 books and over 200 papers, articles and chapters
 OBE for services to mental health 2010
 Mind Champion of the year 2010
Let me begin by introducing myself ...
Rachel E. Perkins, Mental Patient
 25 years with diagnosis of manic depression (bipolar
disorder)
 6 inpatient admissions to psychiatric hospital
 7 courses of ECT
 Long term psychiatric medication
What images does the word ‘mental patient’ conjure up?
 Poor unfortunate
 ‘Mad axe murderer’ –
– unable to make
dangerous, unpredictable need to be looked after for
everyone else’s good
decisions for
themselves – need to
be looked after for their
own 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
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 you
But mental health problems are not simply a
clinical problem … they are a social and
personal challenge
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 them
 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
Too often, some of this prejudice exists in
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 ‘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)
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)
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 …
cut off from friends and family, the communities in which they live,
the person they used to be
the identity of ‘mental patient’ eclipses all other roles and identities
Everyone diagnosed with a mental
health condition faces the challenge
of recovering a satisfying, hopeful
and contributing life





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 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)
Recovery is not restricted to mental health
problems
Everyone experiences traumatic and life changing events like …
 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
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)
There is no formula for recovery:
everyone’s journey of recovery is
different and deeply personal
But 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 communities
 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
‘Recovering a life’ not
‘recovering from an
illness’
“ 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
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)
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 …
 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
2014
 More 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)
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
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)
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 …
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 opportunities
Second, we need a different sort of relationship
between services and the individuals and
communities they serve
 Traditional 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 life
• 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)
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 Colleges
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 Centre
 It 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)
The development of an idea:
Developing a Recovery Education
Centre in a UK context
 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’
We 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 together
Combine Recovery Innovations ideas with work we had
done in UK around ‘expert patient programmes’, ‘selfmanagement programmes’, anxiety management courses,
hearing voices programmes …
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.”
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
Melbourne
Video
Central and North West London Foundation Trust
Recovery College
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)
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 agencies
People from local communities
http://www.centreformentalhe
alth.org.uk/pdfs/Recovery_Col
leges.pdf
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 courses
4. It operates on college principles
Does not offer treatment or care co-ordination
No referral: students select courses from a prospectus
No 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
•
•
•
•
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 staff
6. There is a Personal Tutor (or equivalent)
• Offers information, advice and guidance
• Helps people to select courses
• Helps people to develop a learning plan based on their hopes, aspirations, interests and
wishes
7. Not a substitute for specific, technical assessment and treatment/therapy
• Replaces and extends what is currently done in ‘groups’ , ‘individual work’ , ‘psychoeducation’
• 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, police
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 trainers
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
2. Rebuilding life with mental health
challenges – ranging from one day
introductions to recovery to longer courses
 Telling your story
 Planning 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’
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 selection
5. Family and friends
 Family 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 problems
 Often attended by individual and their relatives/friends so family can learn together
But 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
demand
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.
 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.
Changing the relationship between
services and those whom they serve
The 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)
 Enables people to become experts in
their own self-care and develop the skills they
need for living and working
 Affords choice, control and selfdetermination - students not passive recipients
of the prescriptions of experts
 Breaks down ‘them’ and ‘us’ barriers that divide ‘staff’ from ‘patients’ and
perpetuate stigma
 Breaks 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
An evidence based intervention?
Emerging outcomes from Recovery Colleges
 Increased hopefulness
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)
 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 volunteering
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 asked
 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 …
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.”
“I have moved further
in my recovery in one
term here than in the
past two years in the
team.”
“It has given me hope
and direction.”
“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.”
“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.”
“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.”
“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 is life-changing.”
“It has refocused me
on what is important in
life and how to cope.”
“I am not ashamed of
my illness any more.”
Video
Sussex Recovery College
A partnership between Sussex Partnership NHS Foundation Trust and
two NGOs:
Mind in Brighton and Hove and Activ8 in Hastings
Perkins et al (2012) Recovery Colleges, ImROC Briefing paper, London Centre: Centre
for Mental Health/NHS Confederation http://www.imroc.org/wpcontent/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 …