Survivorship after Breast Cancer Michelle Derbyshire Macmillan Breast Care Nurse Sunderland Royal Hospital February 2012

What is Survivorship A patient that has completed their initial cancer treatment and has no apparent evidence of disease.

UK Survivorship Statistics 2 million cancer survivors in the UK at the end of % of survivors are recovering from breast cancer 30-50% of the cancer survivor population will require some form of intervention to enable them to effectively manage the consequences of treatment. (Macmillan 2008)

Survivorship in Sunderland Pockets of good practice everywhere Share the work we have undertaken in Sunderland Developing and End of Treatment Workshop Started the programme in 2008 Now well established but constantly changing!

Historical Practice Breast Care Nurse supported patients throughout their cancer journey but terminated contact at the end of adjuvant therapies Expectation for patients to self refer for prosthetic fitting, extra support or symptom management.

Drivers for Change Through intuition and qualitative data it became evident that many women were struggling following treatment for breast cancer Feelings of abandonment Isolation Fear of the future / recurrence Increased referrals to GP’s health professionals for support and symptom advice

Government Reform Cancer Reform Strategy (2007) Macmillan Cancer Support Charitable Bodies Breast Cancer Care Patient Led

Catalyst for change Found that people with cancer often feel abandoned during the first year of completing their treatment Growing evidence that post primary treatment support group programmes can increase quality of life and psychological functioning

End of Treatment Workshop Helping to give women with breast cancer the skills and tools to manage their own care without the aid of a “key worker” Face the future with a positive attitude Sign post to available support Enhance knowledge and enable patients to seek medical advice when appropriate Use of the holistic needs assessment to help shape the sessions

Areas discussed Follow up Side effects of Endocrine therapy Lymphoedema Nutrition Exercise Body image/ sexuality/relationships Prosthesis/reconstruction

Contd.. Returning to work Holidays Dispelling the myths Symptoms to look out for Who to contact Ongoing support

Statistics A review of sessions July 08 –January sessions performed 283 patients attended Of those invited 60% have attended

Contd.. 40% did not attend 50-70% of cancer survivors will not experience psychological distress following surgery (DoH 2008 survivorship initiative think tank) Therefore we hope we have captured the patients requiring support in our service

Demographics 35% of patients in our group were aged 70+ When asked the reason for not attending the workshop patients quoted the following reasons:- Not relevant, more for the younger patients Private person didn’t like group sessions I’ve already relied too much on my family to bring me to hospital appointments for treatment

Continuing to improve the Patient experience Identifying how women adjust to getting back to normality 1 year post adjuvant treatment by inviting ladies to a “ moving on after breast cancer session” facilitated by the breast care nurses with a bigger emphasis on what is available within the community setting smoking cessation/ health trainers/ diet exercise/ counselling service/support groups

Drop in session Once a month in the hospital setting Facilitated by the breast care nurses Mainly directed towards patients currently receiving chemo or herceptin for primary breast cancer however there is a cohort of patients that continue to attend over a year on and offer support to the new patients coming along

The Future Many breast cancer patients are now “ living with their cancer “ for many years due to improved treatments. So our aim is to role this out to metastatic patients and to tailor make it to their needs.

Conclusion It is not easy changing a service Its about adapting to new ways of working Better time management It definitely benefits patients Less patient referrals for symptom control Allows the patient to take control Thank you for your time Any questions??