Patients or partners?
Shared (?) Decision-Making in young
people’s mental health care
Kate Martin
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Common Room
Common Room is a consultancy that promotes the views and expertise of
people with lived experience across disability, health and mental health.
We connect the expertise of people with lived experience with the expertise
of researchers, commissioners, practitioners and policy makers.
We believe that it's better to work together, use our collective expertise and
be partners in change to ensure people
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–
–
–
–
Are actively involved in decisions about their lives, treatment and support
Are empowered to manage their health and self-direct their support
Are active partners in the development and management of services
Are equal partners in research, quality improvement and policy programmes
Have a collective voice and about social, policy and practice issues that affect their lives
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
YOUNG PEOPLE AND DECISIONMAKING
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“I had a reassessment of my diagnosis last year
and it was the first time anyone said ‘what do
you think the problem is?’
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
• Young people want collaborative involvement in
their mental health treatment and care,
especially…
– in the analytical stages of decision-making
– weighing up the benefits and risks of treatment
options
• BUT….
– Involvement is often limited or passive e.g. giving
their history
– Experience decision-making between their parent and
the clinician or being talked about
•
(e.g. Simmons, Hetrick, Jorn 2011)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
• This can
– Make young people feel out of control
– affect willingness to seek treatment or agree with
decisions that have been made
• There is evidence of premature
disengagement with 30-40% dropping out.
• Non-collaborative decision-making is a key
predictor of non-attendance.
Allegria 2008, Mitchell and Selmes 2007
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
WHAT IS SHARED DECISIONMAKING?
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Think of a time when…
Turn to your partner. Thinking of a time when
you received good support in healthcare (or a
service elsewhere).
What made this so good? Be specific, what did
they say or do?
How did this make you feel?
What would it have been like otherwise?
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Paternalistic
model
Professional
decides
without
eliciting user
preferences
Shared Decision Making
Professional and service user
work together to:
• Clarify treatment goals
• Share information about
options and preferred
outcomes
With the aim of reaching a
mutual agreement on the best
course of action to take
Informed choice
Service user is
responsible for
making decisions
on their own,
based on
information
provided by the
professional
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
• SDM In long term care … (and mental health?)
– Often requires self-care and on-going, unaided
choices and decisions that usually occur outside of
the clinical encounter, in the patient’s own space;
– takes place over an extended period of time;
– involves choices and decisions that are frequently
revised;
– relies more heavily on a partnership between the
clinician and patient (charles et al, 2006)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“It is a philosophy as well as a way of doing
things. Central to it is the belief that patients
have a vital role in the decision making process;
that their values and self-determination need to
be considered equally alongside scientific
knowledge.” (Health Foundation, 2012)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Experience of difficulties
Social circumstances
Attitude to risk
Impact on life
Values/Preferences
AND..
Expertise in mental health
Mental health difficulties
Treatment/support
Options
Evidence base
Outcomes probabilities
What’s helped other CYP
Adapted from
Coulter, 2012
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Five steps to shared decision making in CAMHS…
1. Young people and those working with them agree
key problems and goals together
2. Those working with young people support them to
understand the options available to them
3. Young people and those working with them agree
which options they will try
4. Young people and those working with them review
progress
5. Young people and those working with them discuss
options and make any changes as necessary
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“I think for me, a lot of my issues
have come from the key problems
not being agreed. A lot of the time
it feels like I’m looking for a
solution to a problem the
professionals aren’t trying to
treat.” (Young person)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“Mental health decisions are rarely clear cut and
often involve complex tradeoffs, which are
(arguably) best evaluated and assessed by
people themselves.”
(Drake, Deegan and Rapp, 2010).
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Not just about tools, but they can help
Site A
Tracking how YP
find meetings
Tracking
goals
progress
Making
assessment
Using
form YP
bulls eye
friendly
electronically
Thinking about
how to involve YP
Involving YP and their families
in ward
in CPAs
Making care plan
Goal setting & review
rounds
more YP friendly
Asking YP’s feedback &
Using video
Developing a
Using
responding to this
interaction guidance
confidentiality
RCADS
to capture SDM
postcard
Describing options
CODE
available
Using
YP friendly
Using
SDQ
appointment
Choosing
Developing
letters
booklet
talking mat to
Trialling a
Developing
discuss options different 4th
with YP
question when twister and
dartboard
using the Bull’s
bulls eye
eye
Site C
Site B
Developing assessment/
referral book
Site D
EBPU, Shared Decision Making in CAMHs Final Report,
Health Foundation
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Which decisions?
“...a decision can always be shared, no matter how
poorly or young or ‘challenging’ the patient is. It’s
not if, but how…” (young person)
• Not just treatment options…
• Not just the what, but the how…
• There are always options even when they are
very limited (e.g. extremely unsettled patient still
having option to walk to High Care without
physical intervention) (EBPU, Closing the Gap Shared Decision-Making in CAMHs)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“You are never too ill to be involved”
“Different levels of sharing decisions at different
times is ok. Help us understand what the
decisions actually are.”
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
WHAT ARE THE BENEFITS OF SDM?
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
• Improves people’s knowledge about their health
and treatment options
• increases their active involvement
• Increases satisfaction with their care
• increases self-confidence in their own knowledge
and self-care
• improves professionals’ communication with
patients (The Health Foundation, 2012)
• Improves the experience – personalises care to
the individual
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“Living with a chronic condition means children
will often have many choices and decisions that
they are responsible for in their daily lives,
which needs informed commitment not passive
compliance”
(Alderson, 2007)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
SDM in CYP mental health
Young people said involvement in decisionmaking
• can improve ‘adherence’ to treatment
• Increase their safety e.g. by being able to
recognise side effects and know what to do
about them
• Makes them feel empowered
•
(Simmons, Hetrick and Jorm, 2011)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“I was sent to services so I wasn’t that
committed I don’t think.[when I was asked]‘why
are you coming’ and we worked through ‘well
what are we trying to get out of this, why are we
doing this, what is the problem we are trying to
address, what are the goals’. And actually I
hadn’t been committed before and that made a
real difference.” (Young Person)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Shared decision-making in CAMHs
Can improve relationships between…
• Clinicians and young people
• Clinicians and parents
• Clinicians and colleagues
(EBPU, Closing the Gap: Shared Decision-Making in CAMHs, Final Report, Health Foundation)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Changing relationships through SDM
• The approach helped clinicians be more open with young
people and more transparent about what everyone was
agreeing to work on
“Discussed client’s goals in context of how it would be useful
to spend our time together and what client would like to
achieve/ what she's motivated to do. It felt like a natural
part of the conversation and a way of focusing what she
wants to achieve as well as a way for me to find out what
motivates her.” Clinician on using more collaborative and explicit goal
setting at start of contact
(EBPU, Closing the Gap: Shared Decision-Making in CAMHs, Final Report, Health
Foundation)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Changing relationships through SDM
• Sometimes this meant being clear that the young people were
choosing not to take up the offer of therapy rather than being
offered it and just not turning up:
“I talked with YP about options for support and acknowledged with her
that she could choose not to seek help - as she finds it very
hard/relevant to meet. We talked about options for self-help. The
session was very hard. But by being open with her about discomfort
with the help and her reluctance to meet we were able to talk
about her rights choices about CAMHS support.” Clinician on
exploring and agreeing options
(EBPU, Closing the Gap: Shared Decision-Making in CAMHs, Final Report, Health Foundation)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Changing relationships through SDM
• SDM helped facilitate more explicit conversations and
negotiations even in very stressed contexts such as
forensic inpatient wards:
• “I think young people have started making informed
risk decisions about their own risk level and they
understand it more. They understand if I do this, if I
punch this person in the head I’m going to get
restrained. I can choose not to do this and ask for some
time off the ward.”
(EBPU, Closing the Gap: Shared Decision-Making in CAMHs, Final Report, Health Foundation)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
SDM and Risk
• Closing the Gap: Shared Decision-Making in CAMHs
• Risk incidents seemed to reduce as young people were
became more engaged with SDM approaches.
• Young people said
– It’s not their behaviour that had changed, but the way they felt.
– They felt more valued and empowered
– that their delivery of care is better because they are more
involved in their own lives and have taken more responsibility
and ownership of core documents and decisions made.
– They were taking more responsibility for their actions
– Greater understanding of risk and of restrictions placed on them
as a result of risk
– More likely to attempt to follow care plans if involved in writing
process
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“I began to trust that they actually did
care. And if I said ‘no this isn’t
working’ they’d say ‘ok what can we
do?’”
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
“When I left the young person’s unit I was in, they
then asked me where I wanted to go, what would
help – I think having that conversation made me
more committed to being in a therapeutic
community – if someone had said ‘you are gonna
be here for another year’ I probably would have
been like ‘no I’m not!’ .I wouldn’t have engaged.
The fact that it was partly my decision meant I
thought ‘I chose to be here, I’m gonna commit to it,
I’ll give it everything I can”
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Staff felt…
That taking a shared decision-making approach
• made communication between staff & YP more open
and honest, especially about risk
• Staff feel they are delivering a better service to YP
• Better reflection on incidents
• Increased engagement with interventions & also with
key meetings
• Internalising boundaries; better for community
integration
• SDM had promoted plans and strategies being used
more long term as opposed to quick fixes
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
WHAT ARE SOME OF THE KEY
CHALLENGES FOR SDM?
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
• The communication skills and patterns of
clinicians are usually well established and
difficult to change
• Gap between values and beliefs about SDM
and our actions
• Little research about negotiating on options
and possible power struggle e.g. the clinician
with the power to prescribe or not, the
patient with the power to adhere or not
(Towle et al., 2006)
(charles et al
2006)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Some difficulties…
• SDM requires people to be active partners in
their healthcare… but…
– how does this fit with how we understand
children and young people?
– How does this fit with how we usually expect cyp
and/or patients to behave?
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
• It is generally accepted that adults should be
partners in decisions about their healthcare, but
this is not so for children and young people.
– Often desire to protect children
– Questions about their ability and competence to be
involved in decision-making
– Tripartite relationship between clinician-child-parent
– Often expected to be passive / not encouraged to be
assertive
– Often referred based on the concerns of others/little
agreement on difficulties at the beginning
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
• Children and young people’s competence to engage in
decisions about their mental health care is often
questioned, with doubts raised
“about the developmental constraints on their knowledge
and experience, their ability to provide accurate
information about the history and phenomenology of
their emotional states and symptoms, their reporting
bias, ability to develop collaborative treatment goals, as
well as the adverse effects of sharing information with
them.” (Day, 2008)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
• Expert patients: active or challenging?
• Understanding competence E.g. can we..
– understand the relevant information
– retain and explain all the issues clearly and resolve misunderstandings
– assist children and parents in their reasoned choice-making (Alderson
et al, 2006)
• Understanding capacity… experience or age?
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
The catch 22…
• What about differences of opinion?
“When the client is compliant, shared decision
making is a virtue; when there is disagreement
about treatment, the client “lacks insight” and
shared decision making is a risk” (Drake and
Deegan, 2009, p. 1007).
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Even more so for children and young
people?
• “Young people who take psychotropic
medications may do so willingly, be strongly
resistant or act somewhere in between, but that
their behaviour is often constructed as expected
teen behaviour or a product of their diagnosis,
rather than an expression of a rational decision.”
(Lambert et al, 2008)
• “To ‘prove’ their capacity young people need to
concur with clinical advice to demonstrate they
can make ‘rational’, ’competent’ decisions”
(Mackenzie and Watts, 2014, p. 102)
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL
Over to you…
• Active or challenging?
• How we do put our values into practice and
make SDM explicit in our actions?
• Catch 22 – how do we respond to differences
of opinion?
• What are the risks of not working
collaboratively?
Common Room Consulting Ltd. is a company registered in England and Wales. Registered No. 8534680. VAT Registration No 181 0516 34.
Registered Office: 27 Mortimer Street, London, W1T 3BL