The patient experience of
MSCC
Clare Warnock
Practice development sister
WPH
Patient’s experiences of SCC

Wide range of challenges associated with
SCC





Muscle weakness, loss of mobility, impaired skin
sensation, pain, incontinence, sexual dysfunction
Sudden loss of independence
Awareness of poor prognosis and implications of a
life limiting illness
Unlike spinal injury patients they have limited
time and opportunity to adapt
What is it like to experience this?
What is the patient’s perspective?

Limited research exploring the patients perspective


Two studies suggests some intriguing findings
which resonate with our experiences




Study currently in progress at WPH
Interviews with patients at various time points
following their diagnosis with SCC (Eva)
Interviews immediately post diagnosis and treatment
(local study)
Identified some of the challenges patients
experience
Provides insight into ways patients with SCC cope
Difficulties described by patients






Patients expressed sorrow, frustration and regret
about multiple losses
Their body had become unfamiliar and unpredictable
Previous taken for granted activities were no longer
straightforward
Not being able to walk was a main concern
Loss of independence
 Needing help for so many ADL’s
 Not being able to do the things you used to do
Uncertainty about future mobility
 Will it improve, how much will I be able to do
Difficulties described by patients


Getting home
 Will I get there/how will I manage
 Practical adaptations that have to be made
 Impact on family and family life
 Needing support from outside agencies
 what support is there, will I get it, what is
the least amount I can get away with
Fears that others would treat them differently due to
their cancer AND their disability
Challenges faced


Having cancer and a poor prognosis
Changing roles and identity

Challenged by limited mobility and loss of
independence
How will I cope with being in the house more
(boredom, activities, what will I do with my time)
 How much of previous life outside the home will I
be able to continue (e.g. going out for meals,
holidays, caravan, social club, pub, work)

How did patients manage these concerns
and fears?

For most patients with SCC there is no time to
adapt to illness and disability



Little opportunity to develop a sense of identity
which incorporates these factors
Patients acknowledged that MSCC required them
to make practical plans to manage certain tasks
But they tried to do this in a way that didn’t
threaten their sense of identity

Who they are, their hopes and expectations
Strategies used by patients


Patients described how their lives had not intrinsically
changed
 “Inside” they were who they had always been
 Emphasising their ability to manage by their
resourcefulness and ability to solve problems
Revising expectations of what they felt was acceptable
for their quality of life
 E.g. initially a wheelchair was unacceptable to them
but as it became evident they needed one to became
seen as a positive way of getting around
Strategies used by patients


Setting “safe” boundaries (Eva 2009)
 Not putting themselves to the test
 Not trying to do things that they knew might not
be achieved
 Limiting their exposure to challenging tasks or
environments
 Avoiding confronting how difficult plans might be
to achieved in reality
Aiming for small realistic achievements
 Hoping to be able to stand with a frame/to use the
banana board
Coping with challenges (local study)

Using the positive potential in uncertainty


Focusing on the immediate practical issues
rather than worrying about the long term


They have said they don’t know if I will make any
progress but that means that I might
e.g. Working through the practicalities of getting
home/improving mobility
“The perspective sandwich”

Acknowledge the challenges faced while stating a
potential positive


E.g. some improvement in mobility,
the action taken to help e.g. exercises, practice
Strategies used by patients


Looking forward to specific events and making “plans”
for achieving them
 Some plans were achievable
 E.g going shopping in town in the wheelchair
 Some were plans that could not be achieved
 Often these were simply statements of intent e.g.
we are planning to go on holiday in the camper
van next year
On one level it did not matter if the plans were realistic
or achieved
 there was enjoyment to be had from looking forward
to something happening at some unspecified time in
the future
Implications for HCPs



The convention in healthcare is to encourage patients to
accept reality
However, a degree of lack of realism might be an
effective way of coping with adversity
What we think patients should want to achieve may not
be the same as the patients perspective
 Hope as expectation, hope as wish
Hope and coping


What is hope?
“a confident yet uncertain expectation of
achieving a future good, which to the hoping
person, is realistically possible and personally
significant”
Relative to the individuals circumstances
•
•
•
Fluid and changing
Personally constructed
Not always necessarily achievable
Thinking about hope

Hope as expectation


Hope for an outcome to occur with the expectation
that such an outcome is likely
Hope as want, wish or desire


(Wiles 2008)
Hope for an outcome where the likelihood of it
happening is remote
Expectation and wish could be seen as two ends
of a continuum


People move back and forth along the continuum
People can simultaneously have different types of
hope in relation to a range of recovery outcomes
The role of positive illusions in hope and
coping

•
•
•
Many coping strategies are based on positive illusions
rather than a realistic interpretation of events and the
persons ability to control them
Is this how we approach life normally?
Consider the difference between hope as expectation
and hope as wish
• Think of the “to do” list
• Should it be any different because a person has
cancer?
Positive illusions may play an important role in coping
 Might be more adaptive than realistic beliefs
• Generate more active ways of coping
Implications for HCPs


Difficulties if patient’s plans and their ability to
achieve them clash


Realistic plans aren’t made for everyday living
overly optimistic/ impractical
feasible and grounded
Try not to contradict unrealistic goals


E.g. concrete plans made for the unachievable
However, there are usually 2 levels of goals



look out for and develop achievable goals
Patients can simultaneously hope for a cure and
acknowledge the terminal nature of their illness

No need to force the truth unless there is a sound reason
to do so
Is it that simple?


In reality we all move back and forth
between negative and positive
In our study we found a constant
negotiation of these positions
Figure two: Summary of the relationship between the core themes from patients’ descriptions of their experiences of advanced MSCC
Thinking through the implications of MSCC
Voicing concerns and expressing sadness about
the impact of MSCC within key areas of concern
Meeting the challenges of MSCC
Initiatives to manage the current and future
implications of MSCC
Loosing mobility and independence
 Not being able to walk
 Being dependent on others
 Having to use mobility aids
 Not being able to do what I used to do
 Questioning whether this could have been
prevented by earlier detection
Improving mobility and independence
 Practicing new skills
 Carrying out taught exercises
 Testing own limits
 Emphasising improvements achieved
Challenges to getting home
 Physical adaptations needed to the house
 Support available from family and
community services
Anticipating the future with MSCC
 How will I manage at home?
 How will I cope with needing help from
others?
 Will my family be able to manage the
demands my MSCC places on them?
 How will MSCC affect my work, family and
social life?
 How much will my mobility improve?
 How will my cancer progress?
Uncertainty about cancer progression and
changes in mobility
Balancing the two core
themes
Describing a problem
and exploring how it
could be managed
Being positive while
acknowledging that
things might be difficult
or not turn out as well
as they hoped
Developing ideas and solutions for overcoming
the challenges of getting home
 Making it easier on those providing care at
home
 Suggesting practical solutions to potential
physical obstacles
Taking “the right approach” to MSCC
 Being positive about their ability to cope
 Not looking too far into the future
 Aiming for small realistic achievements
 Taking hope from uncertainty
 Strategies to manage negative thoughts
(distraction, humour)
 Positive appraisal of own strength, values
and ability to cope
 Accepting the situation and moving on
Helpful actions and behaviours from healthcare
professionals
 Teaching new skills, allowing opportunities
to test their limits
 Being honest and leaving room for hope
Conclusions



Patients with MSSC face enormous challenges
Sometimes they want to talk about their problems and
concerns and express anger, frustration and sadness
Sometimes they want to focus on the positive



Sometimes this includes non-achievable goals and wishes
Important to listen to the patient and work with their
strategies for coping
Taking our cues from them but ensuring their care plans
meet their current and future needs