The patient experience of MSCC

1. The patient experience of MSCC Clare Warnock Practice development sister WPH

2. 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?

3. What is the patient’s perspective? • Limited research exploring the patients perspective • Study currently in progress at WPH • 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 immediately post diagnosis and treatment (local study) • Identified some of the challenges patients experience • Provides insight into ways patients with SCC cope

4. 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

5. 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

6. 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)

7. 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

8. 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

9. 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

10. Coping with challenges (local study) • 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 • Focusing on the immediate practical issues rather than worrying about the long term • 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

11. 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

12. 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

13. 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

14. Thinking about hope(Wiles 2008) • Hope as expectation • Hope for an outcome to occur with the expectation that such an outcome is likely • Hope as want, wish or desire • 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

15. 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

16. Implications for HCPs • Difficulties if patient’s plans and their ability to achieve them clash • E.g. concrete plans made for the unachievable • Realistic plans aren’t made for everyday living • However, there are usually 2 levels of goals • overly optimistic/ impractical • feasible and grounded • Try not to contradict unrealistic 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

17. 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

19. 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