SHINe study day: 'Patients are not scary'
25th May 2006, Scottish Health Service Centre, Edinburgh
Ishbel Sawyer
As a first-time attendee of a SHINE study day, I was a little apprehensive when I headed into the mêlée of coffee-drinking librarians outside the conference room. However, I soon recognised a few familiar faces from a ‘previous existence’ in Glasgow, as well as some more recent acquaintances, which served to remind me what a friendly world Scottish health libraries is!
There promised to be an informative and stimulating series of presentations, and it did not disappoint. Chaired most competently by Andy Jackson (University of Dundee), the five speakers gave us an interesting insight into four quite different patient information services.
Sandra Wilson: Information Officer, Scottish Motor Neurone Disease Association
Sandra began by outlining the history and structure of the Association, which this year commemorates its 25th anniversary. She highlighted the dual role of the Library and Information Service (LIS), providing information to motor neurone disease (MND) patients and their carers at the same time as supporting the work of the professionals in the Care Team (and further afield). Sandra emphasised that patients are not scary, just ordinary people faced with a daunting terminal illness about which relatively little is known and they look to the LIS to help them understand the disease further. Asked whether there was a danger that patients might be looking for a 2nd/3rd/4th opinion on their diagnosis from the LIS, Sandra said that care is taken to ensure that patients/carers know that the LIS does not take the place of the medical team, but rather is a supportive ‘middle ground’. Current projects with which Sandra is involved include co-producing a book on MND which through a grant has been sent to all public libraries in Scotland; collaboration with other MND associations, particularly in England, to offer wider services eg. information in other languages; and the NHS Education for Scotland Unified Library Management System project. The latter, she feels, will benefit access to the charity’s resources for her users and a wider audience.
http://www.scotmnd.org.uk/library.htm
Eileen Richardson: Library and Information Services Manager, Dementia Services Development Centre
The Dementia Services Development Centre (DSDC) LIS is based within the Iris Murdoch Building in Stirling. Eileen talked of the extraordinary ‘dementia-friendly’ design of the building – named after the author whose battle with the illness was immortalised in the film Iris - and of the incorporation of stained glass and artwork produced through the self-expression of dementia patients. It’s certainly a building I would be interested in visiting. The LIS has a growing collection of over 7000 articles and 12000 books, and provides library and information services to a wide range of users including researchers, university students, health and social care professionals, carers, architects and designers. The LIS’ services are aimed mainly at professionals to support them in caring for dementia patients, rather than the patients themselves, although Eileen works closely with other patient-focused organisations such as Alzheimer’s Scotland. Their services include UK-wide postal lending, distance learning tutoring support, literature searching and journal indexing, and they hope to start offering basic patient information on their website. http://www.dementia.stir.ac.uk/information.htm
Katharine Humby & Jill Jackson: PALS Manager & PALS Development Officer, Durham Dales Primary Care Trust Patient Advisory and Liaison Service [PALS]
Katharine and Jill presented as an extremely entertaining and interesting double act. Jill works in Easington in the acute sector and Katharine works in Durham Dales in the primary care sector – and through colourful snaps of their working environment the scene was set. They said they like to think of PALS as ‘customer services for the NHS’. They are a troubleshooting service which deals with informal comments on service delivery to complaints and more in-depth enquiries. In their experience, people often don’t want to make a formal complaint, but just want their concerns acknowledged, and PALS can provide reassuring on-the-spot access to someone ‘on the inside’, one step removed and independent from the clinical team, who can reduce the complexity of the NHS. However Jill and Katherine stressed that PALS doesn’t replace the NHS complaints system. To illustrate how PALS works effectively and the type of enquiries they deal with we heard encouraging examples through the stories of ‘Pearl’ and ‘Dean’ (who looked remarkably similar…). The services provided by Jill and Katharine’s team have been in existence for three years and have achieved Quality Mark accreditation. Comments and complaints made to the PALS team are passed to board level as a form of continuous feedback and this informs the board’s performance management process. Katherine and Jill’s enthusiasm and commitment to the service shone through as they demonstrated how they work in close local networks, practising joined-up working between health and social care providers.
http://www.pals.nhs.uk/
Katie McGlew: Health Information Manager, NHS24 Knowledge and Health Information Team
I had heard a lot about NHS24 and it was fascinating to hear about how an information team can support staff so directly in providing information to patients. Katie’s presentation focused on what critical appraisal means for NHS24 and how the Knowledge Team support this within the organisation. This is done firstly by providing a pool of quality resources for staff to access and also by ensuring that all NHS24 staff are equipped with critical appraisal skills by delivering a structured training programme. Katie explained that critical appraisal is about considering, evaluating and interpreting information in a systematic and objective way, which she argues everyone does constantly without realising. She and her team demystify the process – particularly for non-information professionals - through an intriguing training exercise using a variety of popular magazines, and canvassing opinion on each one’s targeted audience etc. Staff are not personally responsible for the quality of information they provide, as the Knowledge Team takes responsibility for quality control by quality assuring information provided to NHS 24 staff. So by ensuring that the critical appraisal approach is adopted in all areas of information provision and by setting clear parameters within which to work, NHS24 is safe in the knowledge that its staff are providing quality assured patient information to their users, which ultimately means that patients are protected and the service maintains a high level of credibility.
http://www.nhs24.com/html/content/default.asp
Ishbel Sawyer MA(Hons) MSc
Assistant Librarian
Health Management Library
www.healthmanagementonline.co.uk