Working on patient surveys
MS Trust patient survey service
GEMSS (Generating Evidence in Multiple Sclerosis Services) is the MS Trust’s flagship programme to collect evidence about how services work best for people with MS and develop NHS services for the future. As part of the GEMSS programme, the MS Trust developed a patient survey which proved to be the most valuable and insightful tool to help MS teams prove their worth and identify areas for improvement.
Although the survey service was initially only open to teams participating in GEMSS, the MS Trust soon realised this was a valuable service we could offer to all UK MS nurse and therapist teams.
Since January 2016, 15 MS teams have used the service, with 1,171 people with MS responding. The results have yielded vital feedback on the services, both in terms of the value of the MS specialist nurse support, but also in terms of how services might be improved to better meet the needs of people with MS.
Some examples of the feedback MS services have received:
“Over the past 12 months, the MS nurse (Natalie) has been absolutely fantastic… She helped me a lot in times of difficulties and uncertainties. And in particular she managed very well my past relapse earlier this year. I have been able to attend physiotherapy classes and receive psychological support. She couldn't be more helpful and I cannot be grateful enough.”
“I have had the same MS nurse since my diagnosis. She has been really good at making and taking the time to listen and be there. She has referred me to other professionals so I would get the help I needed. The MS nurses at hospital do a great job. I am really grateful.”
“MS specialist far more 'in tune' with disease and its effects. Also better at discussing medication... Produces more detailed reports for GP and neurologist.”
“I would like to have maybe quarterly meetings which I could attend with an MS nurse present and fellow MS sufferers. Like a group meeting to discuss and reassure about symptoms/relapses. I do feel isolated at times.”
“I would prefer to visit my MS nurse every 3 months rather than every 6. Especially as at present I only see the consultant yearly.”
We are determined to ensure that people with MS receive the specialist support that they need. We believe the best way to achieve this is to work with the health professionals providing these vital services, to prove their worth and actively seek ways to improve their services.
We can only do it thanks to the generosity of people like you. Your support means that we can continue to support MS specialist nurses and make sure that no one has to manage MS alone. On behalf of everyone at the MS Trust and the 100,000 people living with MS in the UK, thank you very much indeed.