Self-management strategies transform MS treatment
Helping sufferers of multiple sclerosis and their carers understand the support available to them is central to more than a decade of research into the condition at Brunel University London.
Shaping evidence-based guidelines, reports and policies, the research was funded through three grants awarded to Professor Lorraine De Souza, Professor of Rehabilitation.
Among the innovations resulting from the studies were a self-care intervention designed by service users and provided under the guidance of professionals, tested through a randomised controlled trial (RCT), and work to investigate the needs of carers of people with multiple sclerosis, likely to be family members.
The RCT was cited by The Multiple Sclerosis Trust in a report offering proposals for the future of service commissioning, and went on to be the only RCT to be used to inform the National Collaborating Centre for Chronic Conditions' guidelines for multiple sclerosis, affiliated with NICE.
Based on this guidance, workshops were held across the UK by the Multiple Sclerosis Network to support their national implementation, leading one practitioner to say: "Without the involvement and active engagement of the patient groups and Brunel University at the critical first development stages of this journey, none of the listed outcomes and lasting impacts would have been possible to achieve just by service providers or commissioners alone."
The research trial was also used to inform the self care section of the evidence-based markers for good practice produced by the Department of Health's National Service Framework for Long-term Conditions.