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Generating Evidence in MS Services (GEMSS)

Our flagship GEMSS programme collected evidence about how services work best for people with MS. 

The reports outlined ways to develop future NHS services and were published in November 2015. Download our full GEMSS report (PDF 1.6mb) or the Executive Summary (PDF 506kb) – or browse all the GEMSS reports.

Background to GEMSS

The original impetus for GEMSS was our 2012 report Defining the Value of MS Specialist Nurses.

This report identified that MS nurses are highly valued by people with MS, but that there was little robust published evidence about their value and effectiveness. MS nurses were not routinely evaluating their services due to a lack of time, skills and tools to do so.

In 2012, we launched the GEMSS programme and began working with MS nurses to co-develop an evaluation framework and a set of tools and metrics for services. The aims of the project were to build the skills and capabilities of the nurses, while developing a culture of continuous improvement.

The GEMSS work has now expanded beyond MS specialist nurses and the tools developed as part of the programme are now available for use by any MS team, including Allied Health Professionals with a special interest in MS.

The overall final GEMSS report, Evidence for MS Specialist Services (PDF 1.6mb), was published in November 2015 along with an Executive Summary (PDF 506kb).

The GEMSS teams

In the GEMSS evaluation projects, the MS Trust worked with 13 MS specialist nurse teams and three multidisciplinary teams around the UK to evaluate their services.

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GEMSS I (2012-13)

Four MS specialist nurse teams and one multidisciplinary team worked with the MS Trust GEMSS facilitators to co-develop an evaluation framework for MS specialist nurse services and a series of simple data collection tools to gather data about their services. Each team produced a local evaluation report at the end of the year for local management audiences and key stakeholders.

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GEMSS II (2014-15)

Nine teams of MS specialist nurses together with two multi-disciplinary teams evaluated their services using the tools developed in GEMSS I and produced a local evaluation report and recommendations for improving their service. Together with four out of five of the GEMSS I teams, they contributed data to the overall MS Trust evaluation report.

The teams selected to take part in GEMSS were chosen through a national selection process to represent a cross-section of MS services, rural and urban, large and small, community and hospital-based: two were in Scotland, the rest in England.

With initial training and ongoing MS Trust facilitator support, each participating team collected and analysed data about:

  • service activity
  • performance against three KPIs on service responsiveness
  • caseload and casemix
  • patient experience (using a nationally developed MS patient experience survey)
  • stakeholder/professional colleagues’ views of the service
  • activities carried out during consultations (three-week audit by selected teams)
  • activity against capacity in job plans (selected teams).

A summary of the dataset (PDF 480kb) collected by the participating GEMSS teams was produced.

Each team developed a local report about their service, outlining the service’s strengths, achievements and opportunities for improvement, including recommendations for specific service improvements.

The projects were overseen by an expert advisory group and facilitation support delivered by external consultants Mynors-Suppiah working closely with the MS Trust team.

Outputs from GEMSS

The MS Trust used early outputs from the GEMSS evaluation projects to develop a consensus on Modelling Sustainable Caseloads: MS Specialist Nurses for a whole-time MS nurse and then map the current UK workforce against this benchmark.

Each trust or health board participating in GEMSS during 2014-15 entered into a memorandum of understanding with the MS Trust at the start of the project so we could undertake a meta-analysis of the data collected.

In November 2015, the we published a national report of the results of GEMSS, based on meta-analysis of:

  • the caseloads of all the GEMSS team, highlighting differences in patient characteristics (age, gender), type of MS, disability and treatment rates. The combined caseload for analysis, more than 15,000 people with MS, represents around 13% of the people with MS in England and Scotland and as such is a powerful source of intelligence about the population served by these services
  • the GEMSS patient survey responses from nearly 1,300 people with MS
  • the results of the Dorset Specialist Neurological Intervention Audit Tool, which was used by selected GEMSS teams, highlighting the range of interventions and activities carried out during patient consultations.

The final report of GEMSS doesn't highlight individual participating organisations' performance, but draws wider conclusions about the impact and value of MS specialist nursing services, the importance of the whole multidisciplinary team and challenges facing services in today's NHS. 

Impact on GEMSS teams

A separate report on the process and impact of delivering an evaluation programme with specialist nurses and therapists (PDF 4.3mb) was published in January 2016 and presented an evaluation of the GEMSS project itself in terms of its impact on participants' skills, knowledge and confidence to evaluate and improve services.

The evaluation shows the benefits of the GEMSS approach in terms of participants’:

  • ability to handle data
  • confidence to evaluate their service
  • ability to describe the impact of their service
  • improvements in team working
  • improvements in the responsiveness of the service to patients.

The GEMSS patient survey for MS teams, one of the most valuable elements of the project, is available for any MS team to use. 

All the GEMSS teams remained actively engaged in the project throughout. Their commitment and enthusiasm to learn from the project and to continue collecting data, on top of busy ‘day jobs’ has been remarkable and we would acknowledge the major contribution they have made to our knowledge about MS services.

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