SurvivorshipMoving forward project

1. SurvivorshipMoving forward project Veronica Allinson MSc BSc (Hons)RGN YCN Project lead. Medipex finalist 2012

2. Moving on project • Survivorship • How we changed our service • How to manage service changes • Results

3. Survivorship Macmillan estimate that : • About 2 million people are survivors of cancer. • 1:10 people over 65 Are living with a cancer diagnosis • Need to do something else for follow-up !

4. Questions… Looked at the value of a clinic appointments: • To monitor for local recurrence, • Manage the late effects of treatment • Provide information, support and reassurance for patients. • Many patients are willing to take responsibility for seeking medical attention in the event of symptoms arising (Gulliford et al 1997)

5. Replace clinics with what?… • What is the problem with clinics? • What do patients ask us? • What is available now?..BCC courses • What can we provide ?

6. Moving on project • BCC course as baseline • Four week educational programme • Covering all areas that our patients question • Developed pilot study • Continuous assessment / evaluations

7. Audit • 69% response rate • 84% attended all the course • 94% found course beneficial

8. We liked: • Being in a group and hearing from other women. Also being lead by very well trained facilitators and nice refreshments. • I liked being with other ladies who had been through similar treatments and the speakers who came especially the exercise and diet, plus the Lymphoedema advice. • Very informative and as the breast nurses and experts made the session very revealing. Getting to know other people in the group. • I enjoyed all of it more than I thought I would have done.

9. I did not like: • I would liked the course sessions to be longer. • I enjoyed all the course but at times I found it too involved and a little frightening. • The first part where we did not need to be reminded. • Nothing I found everything refreshing and very helpful • Diet for healthy living

10. How do you feel now?

11. Who have you contacted? Breast Care Nurses 16 Prosthetic/Bra Services 14 GP 12 Breast Clinic 8 Reconstruction Services 6 Genetics Service 5 Breast Cancer Care 4 The Haven (Leeds) 4 Lymphoedema Services 1

12. Conclusions: • The majority (84%) attended every session on the course. Reasons for the 15% that did not attend were ‘being unwell’. • 94% (48) of patients found the course beneficial. • In relation to what the patient’s liked most about the content of the course, the most common themes were – reassurance; sharing experiences and meeting people who have gone through similar experiences.

13. Conclusions: • In relation, to what patients liked the least about the course content, the most common themes were – Talking about the diagnosis and treatment; diet and healthy living talks; relaxation and psychological skills talk was rushed. • Majority of patients were ‘very happy’ with the fact they have not been required to attend any hospital breast care appointments a year after attending the course. • Majority (69%) of patients have contacted their breast care nurse during the past year for things such as – test results to information about particular concerns they had.

14. In conclusion • Service was better quality • Patients were satisfied • No extra calls or appointments • Award winning! • Transferrable to other specialities

15. How you can do it .. • Identify the drivers for the project : • Survivorship issues and self management policies as suggested by DOH. • Providing excellent quality service provision • To many patients , to little clinic time • No proven benefit to follow-up clinics • Supported by the YCN • Money savings?

16. How does it fit within your organisations? A) Follow-up policies b) Nurse-led initiatives

17. Who is supporting the project? • CNS support • MD team support • Managers support • Commissioners support

18. Leadership: • Project manager on site required to co ordinate project • Key members required: business manager, general manager, contracting dept. representative, CNS

19. Supporting documents: • Any available audits of clinic satisfaction • Service Specification • Patient Pathway • Staff/costings: table • Template/ chart of processes timetabling

20. Programme development • Developing the programme. The follow-up programme running at CRH/HRI has been well evaluated. • Our research is based on our programme format so any great deviations from this would not be research based.

21. Admin support • Recording attendees and DNA’s . • Sending out joining information. • Patients do not always turn up at the course and will need to be chased with key information if they are not having hospital appointments. • Volunteers, can support the programme

22. Other considerations • Venue • Speakers

23. March 2014

24. May 2014

25. July 2014

26. 2014 comments • The course was well run and staff were approachable and informative. • The speakers were confident and reassuring. I took away lots of positives, enabling me to move forward and I enjoyed meeting all the other participants.

27. 2014 audit comments • 100% of participants strongly agreed they were satisfied with the quality of the course • All sessions were very useful and interesting. It was lovely to meet people with the same experiences. Excellent course!’ • 93% of participants felt the course fully met their needs and expectations. 7% felt it met their needs in part.

28. Conclusion • Changing service provision is acceptable if everyone is in collaboration • Patients accept what you tell them if it is valuable and an acceptable alternative, for you and them.

29. Having a bad day … But I think I got away with it……….