The role of MS specialist nurses (2001) Completed project - detailed summary
Ms Jane Johnson, Professor Pam Smith and Professor Len Goldstone
Faculty of Health, South Bank University, Romford RM3 0BE
The project aimed to describe the role of the MS specialist nurse and to measure their contribution to MS care from a variety of perspectives.
The project contained two elements: Firstly, a national survey of all MS specialist nurses, or nurses spending the larger proportion of their time specifically on MS care. It aimed to document the role of UK MS specialist nurses and suggest recommendations for the development, support and educational requirements of these posts through an exploration of nurses' perceptions of the current role.
Secondly, a developmental case study based around the service of a newly appointed MS specialist nurse in West Berkshire. The aim was to examine the effectiveness of an MS Nursing Service, based on the needs of the local MS population and other associated professional stakeholders, using a variety of methods and from a variety of viewpoints.
What was found
1. National Survey
Generally, MS specialist nurses were very experienced nurses and expressed a commitment to empowering people with MS and their families.
Five key areas of activity were: finding information; symptom management; obtaining psychological care, support and counseling; problems associated with a general lack of awareness of MS; getting care or accessing services.
Positive aspects of the role were:
- Providing support from the time of diagnosis and in longer term management;
- Forming a direct two-way link between patients and professionals;
- To-coordinating with ward staff over complex hospital discharges;
- Supporting patients in their management of treatments such as beta interferon;
- Being actively involved in local educational initiatives;
- Having the opportunity to practice more holistically as a nurse
However, the role could:
- Be very complex, isolating and exhausting, with no boundaries and with a significant risk of "burn out"
- Have an unrealistic caseload and lack of support, specifically clinical supervision
- Show considerable discrepancies in the grading of some MS specialist nurse posts
Although generally satisfied with the job itself, MS specialist nurses were aware that improvements could be made to the way in which such roles were set up particularly for newcomers to the specialty. Some important issues were highlighted surrounding the management, educational and developmental needs of MS nurses.
2. Case Study
There was evidence of service improvement following appointment of the MS specialist nurse from all the perspectives studied. For example, there was a reduction in emergency rather than elective hospital admissions, reduction in the length of stay and a shift away from acute admissions towards rehabilitation, neurology or Young Disabled Unit care.
In addition to the benefits for patients and their families, there was a cost benefit to the Trust. For example:
- A total saving to the Trust of £64,000 remained even after employment costs of the MS specialist nurse. This was based on a comparison of the total costs in the year prior to the MS specialist nurse coming into post, with her first year in the job.
- Reduction in the rate of emergency rather than elective hospital admissions, and a statistically significant reduction in length of hospital stay of approximately 50% of time.
- Elective hospital admissions more appropriately directed to specialist neurology, rehabilitation Young Disabled Unit wards. In the research period, costs for emergency admissions were approximately £255.61 per day versus £179.77 per day for elective admissions in the financial year 1999-2000.
- A simple calculation of reduced cost, as indicated by a comparison of bed occupancy between the two years amounted to £104,000.
Importance for people with MS and health professionals
This study has shown that MS specialist nurses make a measurable difference to people with MS, their families and to other health professionals. Benefits often related to quality of life or care delivery but they could be financial, such as cost savings to the Trust.
Post-holders were able to address needs often highlighted as unmet by other NHS services. This was particularly noticeable when providing a bridge between the person with MS and professionals.
A number of recommendations were made including:
- At the time of diagnosis, support systems should include an MS specialist nurse to bridge the gap between patient and physician expectation and to meet both medical and non-medical needs
- All people with MS should have access to a specialist nurse
- Specialist nurses should have pathways for professional development
The results of this project have contributed to a coherent national framework for the development of more specialist nurses thereby offering better access and services for people with MS. It has also shown the financial savings that can be made, despite improved service delivery.
Johnson J, et al
Evaluation of MS specialist nurses: a review and development of the role.
London & Letchworth: South Bank University & MS Trust; 2001.
The full report can be downloaded in two parts: