The patient experience of MSCC Clare Warnock Practice development sister WPH

Patient’s experiences of SCC Wide range of challenges associated with SCC Wide range of challenges associated with SCC Muscle weakness, loss of mobility, impaired skin sensation, pain, incontinence, sexual dysfunction Muscle weakness, loss of mobility, impaired skin sensation, pain, incontinence, sexual dysfunction Sudden loss of independence Sudden loss of independence Awareness of poor prognosis and implications of a life limiting illness Awareness of poor prognosis and implications of a life limiting illness Unlike spinal injury patients they have limited time and opportunity to adapt Unlike spinal injury patients they have limited time and opportunity to adapt What is it like to experience this? What is it like to experience this?

What is the patient’s perspective? Limited research exploring the patients perspective Limited research exploring the patients perspective Study currently in progress at WPH Study currently in progress at WPH Two studies suggests some intriguing findings which resonate with our experiences Two studies suggests some intriguing findings which resonate with our experiences Interviews with patients at various time points following their diagnosis with SCC (Eva) Interviews with patients at various time points following their diagnosis with SCC (Eva) Interviews immediately post diagnosis and treatment (local study) Interviews immediately post diagnosis and treatment (local study) Identified some of the challenges patients experience Identified some of the challenges patients experience Provides insight into ways patients with SCC cope Provides insight into ways patients with SCC cope

Difficulties described by patients Patients expressed sorrow, frustration and regret about multiple losses Patients expressed sorrow, frustration and regret about multiple losses Their body had become unfamiliar and unpredictable Their body had become unfamiliar and unpredictable Previous taken for granted activities were no longer straightforward Previous taken for granted activities were no longer straightforward Not being able to walk was a main concern Not being able to walk was a main concern Loss of independence Loss of independence Needing help for so many ADL’s Needing help for so many ADL’s Not being able to do the things you used to do Not being able to do the things you used to do Uncertainty about future mobility Uncertainty about future mobility Will it improve, how much will I be able to do Will it improve, how much will I be able to do

Difficulties described by patients Getting home Getting home Will I get there/how will I manage Will I get there/how will I manage Practical adaptations that have to be made Practical adaptations that have to be made Impact on family and family life Impact on family and family life Needing support from outside agencies Needing support from outside agencies what support is there, will I get it, what is the least amount I can get away with 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 Fears that others would treat them differently due to their cancer AND their disability

Challenges faced Having cancer and a poor prognosis Having cancer and a poor prognosis Changing roles and identity Changing roles and identity Challenged by limited mobility and loss of independence 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 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 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 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 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 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 But they tried to do this in a way that didn’t threaten their sense of identity Who they are, their hopes and expectations Who they are, their hopes and expectations

Strategies used by patients Patients described how their lives had not intrinsically changed Patients described how their lives had not intrinsically changed “Inside” they were who they had always been “Inside” they were who they had always been Emphasising their ability to manage by their resourcefulness and ability to solve problems 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 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 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) Setting “safe” boundaries (Eva 2009) Not putting themselves to the test Not putting themselves to the test Not trying to do things that they knew might not be achieved Not trying to do things that they knew might not be achieved Limiting their exposure to challenging tasks or environments Limiting their exposure to challenging tasks or environments Avoiding confronting how difficult plans might be to achieved in reality Avoiding confronting how difficult plans might be to achieved in reality Aiming for small realistic achievements Aiming for small realistic achievements Hoping to be able to stand with a frame/to use the banana board 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 Using the positive potential in uncertainty They have said they don’t know if I will make any progress but that means that I might They have said they don’t know if I will make any progress but that means that I might Focusing on the immediate practical issues rather than worrying about the long term Focusing on the immediate practical issues rather than worrying about the long term e.g. Working through the practicalities of getting home/improving mobility e.g. Working through the practicalities of getting home/improving mobility “The perspective sandwich” “The perspective sandwich” Acknowledge the challenges faced while stating a potential positive Acknowledge the challenges faced while stating a potential positive E.g. some improvement in mobility, E.g. some improvement in mobility, the action taken to help e.g. exercises, practice the action taken to help e.g. exercises, practice

Strategies used by patients Looking forward to specific events and making “plans” for achieving them Looking forward to specific events and making “plans” for achieving them Some plans were achievable Some plans were achievable E.g going shopping in town in the wheelchair E.g going shopping in town in the wheelchair Some were plans that could not be achieved 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 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 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 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 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 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 What we think patients should want to achieve may not be the same as the patients perspective Hope as expectation, hope as wish Hope as expectation, hope as wish

Hope and coping What is hope? What is hope? “a confident yet uncertain expectation of achieving a future good, which to the hoping person, is realistically possible and personally significant” “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 Relative to the individuals circumstances Fluid and changing Fluid and changing Personally constructed Personally constructed Not always necessarily achievable Not always necessarily achievable

Thinking about hope (Wiles 2008) Hope as expectation Hope as expectation Hope for an outcome to occur with the expectation that such an outcome is likely Hope for an outcome to occur with the expectation that such an outcome is likely Hope as want, wish or desire Hope as want, wish or desire Hope for an outcome where the likelihood of it happening is remote Hope for an outcome where the likelihood of it happening is remote Expectation and wish could be seen as two ends of a continuum Expectation and wish could be seen as two ends of a continuum People move back and forth along the 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 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? Is this how we approach life normally? Consider the difference between hope as expectation and hope as wish Consider the difference between hope as expectation and hope as wish Think of the “to do” list Think of the “to do” list Should it be any different because a person has cancer? Should it be any different because a person has cancer? Positive illusions may play an important role in coping Positive illusions may play an important role in coping  Might be more adaptive than realistic beliefs Generate more active ways of coping Generate more active ways of coping

Implications for HCPs Difficulties if patient’s plans and their ability to achieve them clash Difficulties if patient’s plans and their ability to achieve them clash E.g. concrete plans made for the unachievable E.g. concrete plans made for the unachievable Realistic plans aren’t made for everyday living Realistic plans aren’t made for everyday living However, there are usually 2 levels of goals However, there are usually 2 levels of goals overly optimistic/ impractical overly optimistic/ impractical feasible and grounded feasible and grounded Try not to contradict unrealistic goals Try not to contradict unrealistic goals look out for and develop achievable goals look out for and develop achievable goals Patients can simultaneously hope for a cure and acknowledge the terminal nature of their illness 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 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 reality we all move back and forth between negative and positive In our study we found a constant negotiation of these positions In our study we found a constant negotiation of these positions

Conclusions Patients with MSSC face enormous challenges 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 talk about their problems and concerns and express anger, frustration and sadness Sometimes they want to focus on the positive Sometimes they want to focus on the positive Sometimes this includes non-achievable goals and wishes Sometimes this includes non-achievable goals and wishes Important to listen to the patient and work with their strategies for coping 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 Taking our cues from them but ensuring their care plans meet their current and future needs