PIF’s membership is rich and diverse. There are representatives in hundreds of information producing organisations across the UK, working in every sector.
They have a wealth of experience and skill. We thought it was time you heard from them, so every month we aim to highlight the work of one of PIF’s members.
Julia Bell – Head of Publishing, Breast Cancer Care
Breast Cancer Care is the only UK-wide charity providing information and support for people affected by breast cancer. Every year around 58,000 women in the UK are diagnosed with the disease, which can affect not only the person concerned but also their family and friends.
Our roots as a charity are in the experiences of one woman, Betty Westgate, who was diagnosed with breast cancer in the 1960s. She was horrified by the lack of information and support for women in her situation. This led her to set up the Mastectomy Association in 1973, from which Breast Cancer Care directly descended.
So now our extensive portfolio of on and offline patient information is central to the services we provide and is widely used by breast care nurses and medical experts nationwide. It helps to ensure people understand more about their disease, its potential impact and their treatment options. This in turn helps patients to play as full a part as they want in their treatment and recovery, and to be less battered and bewildered by what can be a shattering experience.
This means we have a deep responsibility to ensure our patient information is accurate, up to date, accessible and supportive. We therefore use every strategy available to keep driving up standards in all these areas.
That means using the Patient Information Forum network and events to support our aims.
The networking and educational opportunities we have gained through PIF are probably best illustrated by the trail of events that has led us to present a research poster at the PIF annual conference in May 2016.
Through the PIF network, which includes the NHS England Information Standard workforce and the research-based Health Literacy Group, I learned about the Community Health and Learning Foundation (CHLF).
One of the things that motivates me most about my work is trying to make sure that as many people as possible have easy access to our patient information. This can be both by creating multimedia access points and by improving the way the base level information is written in the first place.
As the CHLF shares that passion, I was delighted to be able to commission them to do focus group user testing on behalf of Breast Cancer Care on some of our easy-to-read products.
The results were enlightening and have provided us not only with insight into improving the products tested but also with general principles to use right across our portfolio that will help make everything just that bit clearer. It is fascinating and heartening to see those principles embedding with the whole team responsible for writing and producing our patient information, from clinicians through to designers. Also, to see new products emerging.
Sometimes it can be quite gruelling dealing with cancer all day every day, but occasionally something comes along that reminds you why it really is worthwhile.
I had one such experience just this weekend (as I write) when I was at a large social event. An old friend came up to me whom I had not seen for 20 years. She told me about her breast cancer diagnosis 18 months ago. But as I was offering sympathy, she got very animated and explained she only wanted to say how helpful she had found our Primary Breast Cancer resource pack. ‘It was lovely,’ she said. ‘It told you everything you needed to know. I put it on the shelf where I could look at it. It filled me with confidence.’
Now that’s what I call job satisfaction.
Previous members of the month
- February 2016 – Sarah Smith – Freelance Consumer Health Information Specialist
- January 2016 – Sue Calnan – Business Development Manager, Health and Social Services Group, Welsh Government
- December 2015 – Claire Cohen – Information and Education Manager, Jo’s Cervical Cancer Trust
- October 2015 – Jane Simkin, Macmillan Patient Information Project Lead, Dorset County Hospital NHS Foundation Trust
- July 2015 – Emily Newsom-Davis, Consumer Health Information Specialist
- June 2015 – Jo Evans, Patient Information Manager, Sheffield Teaching Hospitals NHS Foundation Trust
- May 2015 – Jonathan Berry, Director, Community Health and Learning Foundation
- March 2015 – Jude Palmer, Managing Director, Digital Outreach Ltd
- January 2015 – Sharon Clarke, Macmillan Information Project Manager, Southern Health and Social Care(SHSCT) Trust
- September 2014: Dawn McCarthy, Information Manager, Independent Age
- August 2014: Lilian Anekwe, Consumer Health Editor, BMJ
- July 2014: Will Jones, Development Director, brainstrust
- May 2014: Clare Jacklin, Director of External Affairs, National Rheumatoid Arthritis Society (NRAS)
- January 2014: Kian-Garin de Loach, Creative Lead, Diabetes UK
- December 2013: Jennifer Dickson, Information Services Manager, Roy Castle Lung Cancer Foundation
- November 2013: Eleanor Stanley, health & social Issues writer
- October 2013: Karen O’Rourke, Pateint Information Centre Co-ordinator, Northumberland Tyne and Wear NHS Foundation Trust
- September 2013. Wayne Middleton, Project Development Manager, Luto
- July/August 2013 Saj Shah, Cancer Content Manager, Macmillan Cancer Support
- June 2013. Ted Davenport, Business Development Manager, RNS Publications
- May 2013, Donna Athanasopoulos, PHRU Information & Publications Manager, NHS Greater Glasgow and Clyde
- April 2013. Amber Hammill, Head of Information, MS Society
- March 2013. Hilary Belshaw, Henhouse Productions
- February 2013. Andre Tomlin, Managing Director, Minervation
- December 2012, Rebecca Canvin, Executive Editor, Health Information Team, Bupa
- November 2012,Sarah Thompson, Clinical Librarian, NHS Direct
- October 2012, Louisa Desborough, Director, Freshwater Health and Social Care
- September 2012, Lesley McShane, Library, Information & Knowledge Services Specialist, Northumbria Healthcare NHS Foundation Trust
- August 2012, Greta Hughson, Sub-editor, NAM / aidsmap.com
- July 2012, Colin MacKenzie, Contract Director at The Information Standard
- June 2012, Ria Bowler, Project Manager, British Heart Foundation (BHF)