30 October 2008

Scottish researchers to develop electronic 'passport' for disabled patients

Capability Scotland and Dundee University are joining forces to develop an electronic 'passport' to improve hospital care for disabled people.

The three-year study aims to use technology to improve communication between hospital staff and patients with communication impairments - such as people with cerebral palsy, Parkinsons Disease or learning difficulties.

Capability, one of Scotland's leading disability organisations, is funding the research, announced today (Thursday 30 October) at an event held at Dynamic Earth, Edinburgh to launch the charity's new look, including a new logo, website and vision.

The study was set up after disabled people and their families reported a range of problems during hospital stays. As a result, relatives often take on the majority of caring for patients with communication problems.

Researchers from Dundee University's computing, nursing and midwifery, health and social sciences departments will join forces with NHS Tayside Universities' Trust to develop and evaluate an 'electronic multimedia patient profile'. The special software will provide secure, up-to-date information about the patients' abilities and special needs, as well as personal medical stories. Information will be stored as text, graphics, audio and video and attached to the hospital's electronic records.

Researcher Suzanne Prior said: 'There is widespread evidence of problems experienced by people with communication issues while in hospital. Patient care is often compromised when the patient has a communication problem, because communication breaks down and staff find it difficult to deal with them.

'A consequence of poor patient-hospital staff communication is that the patient's family often take on the majority of caring in hospital, performing all care apart from the actual dispensing of drugs, which can be very stressful for all concerned. This is becoming an even greater problem now as the parents of these patients age and themselves become frailer and in need of more care. For example, in a recent study, parents of adults with severe disability reported spending day and night in hospital with their son or daughter because of a concern for safe nursing practice, such as feeding and turning.'

'The software will be easy to use and the information readily accessible to those who need it. This will hopefully alleviate some of the burden on family members when a patient with communication problems is in hospital and allow them to be more involved in the medical decisions surrounding their care.'

Karen Graham, Capability's service manager, said: 'We have had concerns when our service users are admitted into hospital that staff don't know how to support them.

'For example, when one service user, Miss D, was admitted recently to have a procedure done, the porter who came to support her referred to her as 'IT' which is not acceptable. Then a nurse contacted our service to ask when someone was coming to feed her. When the team leader reiterated that Miss D was in their care now, she responded that 'they did not have time to feed her'. She was then directed to Miss D's comprehensive eating and drinking plan which would support her.'

Capability chief executive Alan Dickson said: 'We are delighted to support this exciting new research. We know from the experience of our own service-users that hospital visits can be particularly traumatic for patients and their families when they have limited or so speech. We hope this research will make communication easier, lessen the burden on relatives and ensure disabled patients have access to an equal standard of healthcare.'

For further information please contact Carol Stewart on 07944 060322 or Richard Hamer on 07950 854080.

Notes to Editors
Capability Scotland is one of the leading Scottish disability organisations and has over 60 years experience of providing services to disabled people of all ages in Scotland. To find out more visit www.capability-scotland.org.uk.

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