Living with Cancer – Patient / Carer Support Programme Gill Satterley

Living with Cancer A 6 week Patient / Carer Support Programme Background 2004First group at Marie Curie Hospice Run with local Macmillan Nurse Numbers small (5 ladies) but feedback very positive 2006Groups 2 and 3 At Marie Curie (internal i.e. Patients recruited from Out-Patients or Day Care). Again small number 6 – 8 participants th Group Venue at Northern Centre for Cancer Treatment In collaboration with a senior nurse at NCCT 6 patients recruited All participants were subsequently referred onto other services e.g. Dietician, Rehabilitation programme at Marie Curie, Psychological services (CBT) etc 2009Groups 5 and 6 – First venue in the community In collaboration with Macmillan at the Oxford Centre in North Tyneside Group 5 – 18 people recruited Group 6 – 23 people recruited 2010Groups 7, 8, 9, 10 Group 7 – 16 people recruited Group 8 – 10 people recruited Group 9 – 11 people recruited Group 10 – 11 people recruited A total of 6 programmes have taken place at the Oxford Centre in 19 months with a total of 89 patients and carers attending 2012New programme starting 1 st March in North Shields

Living with your Cancer The Oxford Centre, West Farm Avenue – Longbenton A 6 week programme for patients and carers from 27th January – 3rd March 2010 (Wednesday afternoons 1:00pm- 3:00pm) Week 1 – 27th January 2010 A brief overview of cancer and its treatment Dr Leena Bhagwan, Specialist Registrar Marie Curie Hospice Week 2 – 3rd February 2010 Diet and Nutrition Dietician – North Tyneside NHS Trust Week 3 – 10th February 2010 Exercise and Relaxation Patrick Sherlock, Physiotherapist, Marie Curie Hospice, Newcastle Week 4 – 17th February 2010 Help and Support Available from Home Beverley Ferguson, Macmillan Nurse – North Tyneside Community Palliative Care Team Gillian Evans, Community Occupational Therapist, North Tyneside Week 5 – 24th February 2010 Talking about Cancer / Staying Positive Gill Satterley – Nurse, Marie Curie Hospice Newcastle Week 6 – 3rd March 2010 Benefits Advice incorporating Relaxation and Pamper Afternoon

Evaluation Two outcome measures were used: Satisfaction / Programme Evaluation Questionnaire following completion of programme WHO (Five) Well Being Index This psychometric tool measures perceived quality of life. Participants were asked to complete this index at commencement and following completion of the programme.

Living with Your Cancer Programme Evaluation We would really value your opinion. Are you a patient  or carer  How did you find out about the programme? _______________________________________________________________________ In general have you found the programme useful? Not useful at all  Fairly useful  Good useful  Very useful  Excellent  How would you rate each session? Week 1A brief overview of cancer and its treatment (Dr Leena Bhagwan) Poor  Fair  Good  Very Good  Excellent  Week 2Diet and nutrition (North Tyneside NHS Trust Dietician) Poor  Fair  Good  Very Good  Excellent  Week 3Exercise and Relaxation (Patrick Sherlock, Physiotherapist) Poor  Fair  Good  Very Good  Excellent  Week 4Exercise and relaxation (Patrick Sherlock / Gillian Dunn) Poor  Fair  Good  Very Good  Excellent  Week 5Talking about cancer / staying positive (Gill Satterley) Poor  Fair  Good  Very Good  Excellent  Week 6Benefits advice /incorporating relaxation and pamper afternoon. Poor  Fair  Good  Very Good  Excellent 

Has this course met your needs/expectations? Yes  No  If No - Why not?_______________________________________________________________________ _______________________________________________________________________ What have you found most helpful?_______________________________________________________________________ _______________________________________________________________________ What have you found least helpful? _______________________________________________________________________ _______________________________________________________________________ _______________________________________________________________________ Were the staff facilitating the course friendly/helpful? (any comments)_______________________________________________________________________ _______________________________________________________________________ Do you have any suggestions, for example things we could include in future sessions. _______________________________________________________________________ _______________________________________________________________________ _______________________________________________________________________ If you found the course helpful would you consent to allow us to use your comments in our next leaflet to promote the programme? (Please sign.) _______________________________________________________________________ _______________________________________________________________________ _______________________________________________________________________ I Consent - Signed: ………………………………… Date: ………………………… Any other comments._______________________________________________________________________ Thank you for your help.

Living with your cancer – Feedback Evaluation of a 6 week patient / carer programme (27th January – 3rd March 2010) held at the Oxford Centre North Tyneside. A collaborative venture between Macmillan Cancer Support and Marie Curie Cancer Care. 16 patients and carers were recruited on to the programme. Evaluation 1. Satisfaction / Programme Evaluation Questionnaire 92% participants considered the programme very useful or excellent. 8% evaluated the programme as good / useful. What have you found least helpful? Comments were: “None of it” “1 st session (overview of cancer) a bit negative” What have you found most helpful? Comments were: “All of it” “Gill’s talk about staying” “Being with other cancer patients – knowing I am not alone” “Being able to talk about cancer freely” “The wealth of information available” “Therapies available” “Support from each other” “Feeling normal” “Open honest input from other patients and staff” “Help and understanding when going through physical and emotional problems” “Diet and Exercise information” Other comments “I wish I had found out about this course sooner” “The course was brilliant, I hope it will be repeated to help other people” “Course was not long enough” “Nothing was too much trouble. I received all kinds of information which was specific to my situation – all excellent”

2. WHO (five) Well-Being Index (attached) 67% of participant’s demonstrated an increase in score, average increase of 21% (A 10% or more difference indicates significant change) 33% of participants demonstrated a decrease in score (Possibly due to a significant deterioration in condition during the programme) Onward Referral to other services Following the programme some participants accessed other services as appropriate. For example: Specialist Rehabilitation Service at Marie curie Hospice x 6 Psychological Service (CBT) at Marie Curie Hospice x 1 Day Hospice referral x 1 Complementary Therapies at Marie Curie Hospice x 3 Follow Up 6 weeks following completion of the programme participants were invited to an informal get together with tea and cakes. Well supported.

The Way Forward – Following a one year gap New group starting 1 st March What will patients and carers feedback?