Helen Jolley, Project Officer Patient Stories at Velindre Cancer Centre Date: Tuesday, 29 th September 2009 Helen Jolley, Project Officer and Data Analyst

Helen Jolley, Project Officer Patient Stories at Velindre Cancer Centre Snapshot of patient story work at Velindre Cancer Centre: Patient stories as part of the RCN Leadership program Patient stories stemming from Patient Complaints 1000 Lives promotional launch – Patient Story from Bridget McNally Other Projects i.e. Fundamentals of Care Medial Teaching program Patient Stories Staff training workshops Story Workshops for patients (off site)

Helen Jolley, Project Officer Patient Story training for staff Initial project - to design a training session for staff with varying degrees of patient contact Working closely with the StoryWorks team from the University of Glamorgan to design and deliver the training Whole day training session - with an aim to give staff an opportunity to leave their clinical “hats” on the wards Banish their normal working relationships with patients and give them the chance really meet the person not the patient.

1 Day session 9.30am – 4.30pm Discover digital stories Meet Velindre patients Explore ways to use patient stories in their day to day roles Discuss improvements they want to see made in their departments to enable them to use patient stories within their role Staff breakdown – Pharmacists, Nurses bands 5,6,and 7, NA’s and Radiographers Helen Jolley, Project Officer Patient Story training for staff WEEK 1 Frontline Staff

Patient Story training for staff WEEK 2 - Management 1 Day session 9.30am – 4.30pm Managers discover digital stories Meet Velindre patients Given feedback gathered in the first session from their frontline staff Explore ways to enable their staff to work with patient stories Staff breakdown – Managers from; Pharmacy, Radiography, Wards, Service improvement, Patient Safety

Helen Jolley, Project Officer Feedback directly from the training sessions Format of film and soundtrack + human (Michelle Emily) + very real story is much better than handout or statistics A reminder of the ‘human side of health care’ An excellent opportunity to see what we do every day from another perspective Really helpful to gain an insight into what patients really think and also helped highlight the importance of remembering that patients are people with their own lives Great opportunity to discuss issues as a group of different professions Enjoyed today very much - a safe environment to talk and watching patient stories video and listening to guest speakers was very important

Helen Jolley, Project Officer Feedback The patients involved in the workshops went on to tell their stories to the local press. Helping to promote Velindre’s patient story work Velindre has purchased a number of Michelle Williams-Huw’s book “My mummy wears a wig does yours?” “I’ve been treating cancer patients for more than 11 years and now for the first time I was given a valuable and candid insight into what its actually like to be a patient…” Denize Vaile, Senior Radiographer on her first patient story training session. Above: Michelle Williams-Huw, Author and Velindre patient

Next Step, Patient Workshop Considerations: Patient Criteria, for the first workshop 23 to 45 year olds then further workshops concentrating in various areas e.g. Elderly men Promotion and recruitment i)Poster campaign ii)Consultant involvement iii)Specialist nurse Timing, In an oncology setting timing is very important Ownership Consent Helen Jolley, Project Officer Large Scale Patient Workshop planned for September Involving up to 6 patients for a weekend workshop creating their own digital story

Problems i)Patient interest ii)Availability iii)Weekend Workshop vs 2 separate sessions Helen Jolley, Project Officer Next Step, Patient Workshop The large scale workshop worked in theory but not practical in an oncology setting. Informal evening meet and greet Patients have a 2 week period before the first workshop to gather their images and thoughts Workshops completely flexible to patients own lifestyle New Format – Small scale 2 patients

Thursday 24 th September 8.10pm A Person’s Story…

Acknowledgements With thanks to Emily Underwood-Lee and Michelle Williams-Huw for their continuing involvement in Velindre’s patient story training. And also to the StoryWorks team at the University of Glamorgan for their drive and commitment to the project. Helen Jolley, Project Officer