Partnership gives a voice to pressure ulcer patients

A new survey aims to give patients and carers a voice in the search to find the most effective prevention and treatment for pressure ulcers.

Pressure ulcers – pressure sores or bed sores - are hard-to-heal wounds that are painful for patients and distressing for both them and their carers. A wide range of interventions are available for their treatment and management, but evidence of their effectiveness remains limited.

The James Lind Alliance Pressure Ulcer Priority Setting Partnership (JLAPUP), which includes health scientists from the Universities of York and Manchester, is conducting the survey. It is part of a project to identify and prioritise the questions about prevention and treatment that matter most and to encourage research in these priorities.

JLAPUP needs as many patients, carers and clinicians as possible to take part in its survey.

The partnership is funded by a National Institute for Health Research (NIHR) Programme Grant, as part of the Wounds Research for Patient Benefit Programme (WRPB) at Leeds Community Healthcare NHS Trust in collaboration with the Department of Health Sciences at York and the University of Manchester’s School of Nursing, Midwifery and Social Work.

The survey can be completed on-line or on paper, with all responses being included in a process to find the top ten priorities.

Sally Crowe, of the James Lind Alliance and Chair of the Partnership, said: “Pressure ulcers are distressing and disabling for many people in the UK and also pose significant treatment challenges and costs to the NHS. So this is an area that needs new perspectives and solutions, especially from people that live with, or are at risk of, pressure ulcers, and those who treat and care for them. The James Lind Alliance looks forward to working with a wide variety of people and groups on this important project.”

Mary Madden, from the University of York’s Department of Health Sciences, said: “Though there are no patient-led groups specifically representing the interests of people with or at risk of pressure ulcers, many other groups include people affected by them. We are inviting these and allied clinician and carer groups to join JLAPUP to help with ‘uncertainty gathering’ – highlighting gaps in knowledge - and prioritisation. Current members include the Multiple Sclerosis Society, Spinal Injuries Association and Action on Elder Abuse.”

Professor Nicky Cullum, from The University of Manchester’s School of Nursing, Midwifery and Social Work, who leads the Wounds Research for Patient Benefit research programme, said: “Research funds are precious so it is essential that we use them wisely to address the uncertainties that matter most to patients, carers and the clinicians who deliver care. This James Lind partnership is focused on ensuring we get these priorities right.”