I work as part of the information and support team of the Roy Castle Lung Cancer Foundation. We are a small and very busy team whose role is to help people who have been affected by lung cancer by providing support and empowering them, through the provision of information. A couple of things that makes us a bit different:
- We are a UK wide charity, with a head office in Liverpool but our information and support service for the whole UK is based and co-ordinated from Glasgow. This is perhaps very appropriate, since Glasgow has the second highest incidence of lung cancer in the world. In 2011 we were the first organisation with a service not based in England to gain Information Standard accreditation, which was a fantastic achievement for us. However, as most UK wide information services are based in London, I sometimes have a fair bit of travelling to do to attend networking events!
- We are the only lung cancer charity in the UK. This is despite lung cancer claiming more lives each year than breast, prostate and bowel cancer put together. Each year around 42,000 people in the UK are diagnosed with lung cancer. We distribute over 50,000 information products each year.
We are the main provider of lung cancer information to the NHS, with over 60% of cancer nurse specialists regularly using our information products. Our information is distributed free of charge primarily through cancer nurse specialists and information centres.
I’ve worked for the charity for over 14 years, first in the role of Patient Network Manager and for the past seven years as Information Services Manager. In this time I’ve seen a lot of changes to the methods used to communicate health information and the priorities reflected in policy making. Shared decision making and tailored information provision are two topics in which there is currently considerable emphasis on.
One exciting new development for us is the immanent launch of a new lung cancer information pack. This has involved splitting one of our main information booklets in to separate booklets and considerably expanding each subject. The new pack will be an A5 laminated folder and is comprised of two core booklets on living with lung cancer and symptom management along with a DVD. This information will be supported by four separate treatment booklets which can be slotted into the pack as appropriate. The pack will enable lung cancer nurse specialists to provide tailored information to their patients and carers.
Another new resource which we are about to pilot has been the development of Patient Decision Aids (PDA) for lung cancer. This information has been created under the guidance of a panel of leading lung cancer experts, with the aim of aiding decision making. The first two PDAs are on adjuvant chemotherapy for people who have had curative lung cancer surgery. This information is getting piloted in three cancer treatment centres around the UK. Upon successful evaluation the PDAs will be rolled out UK wide.
As previously mentioned we are Information Standard (IS) accredited and are currently taking part in the pilot of the new IS version2. Our experience of IS has on the whole been very positive. Although it has been quite resource intensive for our small team, examining and tightening our information production system has most definitely enhanced the quality of the information we produce.
We receive fantastic input from both our expert advisory panel and reader panel who help us to make sure that we meet the information needs of those who use our service. Furthermore, we produce all of our information in partnership with the National Lung Cancer Forum for Nurses. They guarantee us appropriate nursing expert involvement in the development and review of information products, on a voluntary capacity, and in return we acknowledge the partnership on our information products.
Sharing knowledge and experiences with my peers is an essential part of my professional development. PiF membership has provided me with many valuable networking opportunities from posting questions and taking part in discussions on the website to attending networking events. I especially like the voluntary sector workshops as they are free to attend, which as those of you who work for smallish charities will know, makes all the difference!
If you would like any further information about our work please don’t hesitate to get in touch firstname.lastname@example.org