1. FACET - European Journal of Cancer Care July 2004 slides available at: www.blackwellpublishing.com/journals/ecc After treatment – who cares? Van der Molen, B. 1, Griffiths, P. 2 & Lansdown, J. 3 Slide One *Click on View; Notes Page for explanatory notes After treatment Who is responsible for providing follow up care and support?

2. FACET - European Journal of Cancer Care July 2004 slides available at: www.blackwellpublishing.com/journals/ecc After treatment – who cares? (continued) Slide Two *Click on View; Notes Page for explanatory notes I just wanted everything to get back to how it had been before the cancer. Going back to work restored a sense of normality, but I didnt give myself the chance to rest, recuperate and psychologically adjust to the shock and the trauma. I ended up getting anxious and depressed, and Im sure it delayed my full recovery. Lucy (in Van der Molen, 2003, pg 102)

3. FACET - European Journal of Cancer Care July 2004 slides available at: www.blackwellpublishing.com/journals/ecc After treatment – who cares? (continued) Slide Three *Click on View; Notes Page for explanatory notes After treatment – a patients perspective I felt guilty about taking time to recover, not being able to manage domestic life, work or a daily routine. I felt the financial pressures of being out of work, of having to get back to normal as soon as possible, before I felt ready. Jill, breast cancer (The Cancer Resource Centre)

4. FACET - European Journal of Cancer Care July 2004 slides available at: www.blackwellpublishing.com/journals/ecc After treatment – who cares? (continued) Slide Four *Click on View; Notes Page for explanatory notes After radiotherapy I felt bereft of support and didnt know who could answer questions. John, prostate cancer I felt reluctant to take up the time of my hard-pressed GP and hospital consultant but I needed a different kind of support structure for two years after my treatment had finished. Sarah, leukaemia (The Cancer Resource Centre)

5. FACET - European Journal of Cancer Care July 2004 slides available at: www.blackwellpublishing.com/journals/ecc After treatment – who cares? (continued) Slide Five *Click on View; Notes Page for explanatory notes A mapping exercise looking at the needs of patients after treatment, highlighted three key areas: These are: The role of the general practitioner and primary care Information and support Social and psychological care issues

6. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Six *Click on View; Notes Page for explanatory notes Concerns for patients when they finish treatment Follow-up appointments Long-term side effects and when after cancer treatment they may develop What symptoms to look out for that might indicate the cancer has returned? slides available at: www.blackwellpublishing.com/journals/ecc

7. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Seven *Click on View; Notes Page for explanatory notes Concerns for patients when they finish treatment (cont.) Financial and work issues Can measures like exercise and diet decrease cancer risk? Contact details if there are any worries slides available at: www.blackwellpublishing.com/journals/ecc

8. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Eight *Click on View; Notes Page for explanatory notes Follow up clinics What purpose do they serve? Clinician or nurse led? Hospital or telephone? slides available at: www.blackwellpublishing.com/journals/ecc

9. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Nine *Click on View; Notes Page for explanatory notes Who provides follow-up care and support for patients at the end of treatment? Should it be: The hospital (where treatment was provided) Primary care (the community) Non-statutory organisations (e.g. cancer support centres) slides available at: www.blackwellpublishing.com/journals/ecc

10. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Ten *Click on View; Notes Page for explanatory notes The role of the hospital Should hospitals provide more than just follow-up care? If so, what kind of care/support should be offered? For how long should support be offered? slides available at: www.blackwellpublishing.com/journals/ecc

11. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Eleven *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc The role of primary care Having a supportive GP and access to a local cancer resource centre have been very important in my cancer journey. Once active treatment has ended, tiredness can make the thought of returning to work and living with the results of cancer feel quite challenging. Encouraged by my GP to use counselling and complementary therapies, these challenges were less daunting. Karen, breast cancer (The Cancer Resource Centre)

12. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Twelve *Click on View; Notes Page for explanatory notes The role of non- statutory organisations Being able to access advice and information from the local cancer resource centre, the hospital, and from national cancer helplines has been extremely valuable. I often wonder how I would have coped without this help. Karen, breast cancer (The Cancer Resource Centre) slides available at: www.blackwellpublishing.com/journals/ecc

13. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Thirteen *Click on View; Notes Page for explanatory notes Improving Supportive and Palliative Care for Adults with Cancer Addresses: Co-ordination of care User involvement in planning, delivering and evaluating services Face-to-face communication Information Psychological support services Social support services Rehabilitation services slides available at: www.blackwellpublishing.com/journals/ecc

14. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Fourteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc There needs to be better co-ordination between the providers of cancer care (statutory and non- statutory) in hospitals and the community.

15. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Fifteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc Resources – what is available?

16. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Fifteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc We must prepare our patients to adjust to a new kind of normal life after treatment for primary cancer.

17. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Fifteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc References Adewuyi-Dalton, R., Ziebland, S., Grunfield, E. & Hall, A. (1998) Patients views of routine hospital follow-up: A qualitative study of women with breast cancer in remission. Psycho-oncology. 7: 436-439. Bristol Oncology Centre., Dept. of Sociology, University of Warwick & Bristol Cancer Help Centre. (1999) Meeting the needs of people with cancer for support and self management. Bristol Cancer Help Centre, Bristol. Colice, G.L., Rubins, J., & Unger, M. (2003) Follow-up and surveillance of the lung cancer patient following curative-intent therapy. Chest. 123: 272S-283S. Cox, K. & Wilson, E. (2003) Follow-up for people with cancer: nurse-led services and telephone interventions. Journal of Advanced Nursing. 43(1): 51-61.

18. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Fifteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc References (continued) Moore, S., Corner, J., Haviland, J., Wells, M., Salmon, E., Normand, C., Brada, M., OBrien, M. & Smith, I. (2002) Nurse led follow up and conventional medical follow up in management of patients with lung cancer: randomised trial. BMJ. 325: 1145-1151. National Institute for Clinical Excellence (2002) Improving Outcomes in Breast Cancer – Information for the public. National Institute for Clinical Excellence. London. National Institute for Clinical Excellence (2004) Improving Supportive and Palliative Care for Adults with Cancer. National Institute for Clinical Excellence. London. Oldervoll, L.M., Kaasa, S., Hjermstad, M.J., Lund, J.A. & Loge, J.H. (2004) Physical exercise results in the improved subjective well-being of a few or is effective rehabilitation for all cancer patients? European Journal of Cancer. 40: 951-962.

19. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Fifteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc References (continued) Schultz, P.N., Stava, C., Beck, M.L. & Vassilopoulou-Sellin, R. (2003) Internet message board use by patients and their families. Clinical Journal of Oncology Nursing. 7(6): 663-667. Van der Molen, B. (2003) Taking control of cancer. Class Publishing. London. Van der Molen, B. & Hutchison, G. (1999) Learning to live with cancer: the U. K. experience of a European patient education and support programme. European Journal of Cancer Care. 8: 170-173. White, C.A. & Macleod, U. (2002) ABC of psychological medicine: Cancer. BMJ. 325: 377-380. Ziebland, S., Chapple, A.., Dumelow, C., Evans, J., Prinjha, S. & Rozmovits, L. (2004) How the internet affects patients experience of cancer: a qualitative study. BMJ. 328: 564-570.

20. FACET - European Journal of Cancer Care July 2004 After treatment – who cares? (continued) Slide Fifteen *Click on View; Notes Page for explanatory notes slides available at: www.blackwellpublishing.com/journals/ecc References (continued) Web based resources After Treatment can be found on The Royal Marsden NHS Foundation Trusts website at http://www.royalmarsden.org What now? Adjusting to life after cancer can be found on CancerBACUPs website at http://www.cancerbacup.org.uk Life after cancer treatment can be found on the National Cancer Institutes website at http://www.cancer.gov/cancerinfo/life-after- treatment