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How the MS Trust is helping people with MS make services more accessible, responsive and supportive

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nurses on phone

A survey tool developed by the MS Trust as part of its GEMSS project is enabling people with MS and MS teams work together to improve services

The GEMSS (Generating Evidence for MS Services) programme was a project set up the MS Trust in 2012 to enable MS nurses, and allied health professionals working in MS (for example physios and other therapists) to demonstrate the value of their work and improve the service they offer for people living with MS.

Over three years we worked with 15 teams across the UK, who all together work with over 15,000 people with MS. That’s nearly 15% of all people with MS in the UK.

One of the key elements of the GEMSS project was a survey which enabled people with MS to give their views on the service they received, what worked well and what might be improved. Since the GEMSS project ended in November 2015, we’ve offered this survey to any MS team that might want to use it.

We offer full support to any team that uses the survey. We know that one of the challenges facing MS teams is lack of admin support, so we collect all the responses for them, crunch all the numbers, analyse the data and then produce a presentation of the results, allowing the team to compare their service to national standards, and identify any challenges they face.

We have found that MS nurses and teams think this is invaluable. In December 2016 we carried out an evaluation of the survey tool and the results showed that 93% of teams that had used it said it had lead them to improve their service. Changes included:

  • improving the accessibility and responsiveness of their services for people with MS needing urgent help
  • increasing support for people who want to manage their MS better themselves
  • improving information for people with MS who are taking disease modifying drugs

We also found that the survey tool was crucial in helping MS teams make the business case for more support – whether additional nurses, therapists or admin support. The fact that the survey is conducted by the MS Trust made the findings even more authoritative and credible.

“I cannot praise this service enough,” said one MS nurse who used the survey. “It enabled us to assess the patient’s perspective on our service and helped guide us through this process. It was invaluable to have support and knowledge from the MS Trust team and meant it was much less time consuming for us. We couldn't have done something similar without this support due to the pressures of running a clinical service.” 

Along with our MS Forward View project looking at innovative ways for services to respond to new challenges, and our nurse funding programme, bringing new nurses to areas of greatest need, our survey tool is a key element in the MS Trust’s continuing efforts to ensure the best possible care for people living with MS in the UK. 

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