The importance of an MS coordinator for safe management of DMT’s within the MS team

By Samantha Browne, MS Nurse, Community Aerodrome House Gosport


The Multiple Sclerosis Trust Mapping Report (2018) recommended no more than 315 people with MS per specialist nurse; however, a patient caseload is more than just numbers. This can be due to differing complexity of patients and the geographical area to be covered, especially in the community for home visits. The number of MS ologists at one Centre will also impact on the number and types of disease modifying therapies being offered. The complexity of monitoring and side effects of disease modifying therapies (DMT) can range in frequency and severity between one DMT and another and this has an impact on the workload of the MS Nurses in practice.

Since 2018, Southern Health Foundation Trust (SHFT) have started to care for more people with Clinically Isolated Syndrome (CIS). New DMTs which have been licensed by National Institute for Health and Care Excellence (NICE) include Siponimod, a high efficacy infusion to treat those who have Primary Progressive Multiple Sclerosis (PPMS). Further to new DMTs, there is a change to how medication is administered. Tysabri has recently been licenced for sub-cut administration at community sites with supervision of healthcare professionals. This is going to transfer the caseload intravenous (IV) burden to the community and put unprecedented pressures on MS nurses already in post. Considerations will include insurance, storage, staffing levels, transport (for those with MS), whilst maintaining their current workload.

As of August 2020, our South East Hampshire MS nurse team was reduced from 3 nurses (2.4 WTE) to 1 MS Nurse Specialist (0.8 WTE) with a case load of just under 1000 patients due to staff shortages and the pandemic.

MS Trust Guidelines (2018) recommends admin support in MS teams. SHFT had an MS Co-ordinator in place; however, since 2018 the role has changed, developed and become more complex. As the pressures of Covid and reduced nursing staff impacted the team the lead nurse and co-ordinator worked together to prioritise the essential aspects of both job roles. The increased responsibility of the MS Co-ordinator led to a promotion to a Band 4 MS Co-ordinator to facilitate this at short notice. A negotiation of change in job description was agreed, which the lead admin of the SHFT assisted with. This was agreed by the MS Lead Nurse, Head of Nursing and Allied Health professionals and the Divisional Director of Nursing.


The MS Forward View Consensus (2016) Statement 6, recommends that establishing more diverse teams including sufficient administrative support is essential to enable MS nurses to be released for more clinical tasks.

My objective is to highlight the importance of the MS Co-ordinator to monitor DMTs including blood monitoring protocols. Changes in DMTs in the recent years and upcoming years need further specialist nurse input and monitoring in community settings and this will continue to increase. Consensus Statement 7 states that there is an urgent need to make DMT monitoring safer, more efficient, cost effective and convenient for people with MS. ( My objective is to show that that having a band 4 MS Co-ordinator in employment at SHFT is more cost effective than having an MS Nurse Specialist do all the DMT monitoring themselves.


To audit the impact of the MS Co-ordinator Band 4 on the service it was important to identify the key roles identified in the change of job description that were being undertaken by the MS nurse before the Covid pandemic and these are as follows:

Coordinate prescription management for DMTs; liaising with MS coordinator at Southampton General Hospital.

Coordination and administration relating to blood monitoring requirements of patients, under the guidance of a registered clinician.

Establish and ensure the continuation of effective communication between the MDT team, external healthcare delivery companies, injection support nurses, regional neurologists, regional MS nurses, GPs and the patient to enable seamless provision of DMTs.

The objective is to look at the data and blood monitoring workload of the SHFT MS Coordinator (Band 4), ensuring to highlight the direct implications of escalating the immediate need for this role and highlight why this had to be acted on at short notice due to the workload of the MS Nurse Specialist.

Continuing with the objective, SHFT set about the monitoring of the DMT related contacts that the coordinator made over the space of one week (4 working days), specific to the job description listed above only. This included management of email requests and patient enquires i.e. blood test result enquiries and requests for further blood forms, telephone enquiries which often include requests for support with late delivery of DMTs, enquiries related to phlebotomy services as well as requests for information from Southampton MS pharmacist as well as other members of the MDT around patient specific MDT information, management of letters including consultant letters to confirm change of DMT which the coordinator will load on to the patient progress notes and then change on the DMT monitoring database to update the protocol for new blood monitoring if required, actioning verbal and written requests from the MSSN around any changes that need to be made i.e. more regular blood monitoring, chasing of patients who have not had bloods actioned are just two examples. The coordinator went further and recorded each update on the DMT blood results database and number of letters and blood forms actioned in a day to manage patient specific DMT monitoring and collating results in the MSSN’s diary to ensure swift checking of results when they are in. This has at times necessitated the coordinator to try to make contact with a particular patient 7 times in the form of telephone calls, emails and letters to ensure blood monitoring is achieved in the past.

Discussion and Conclusion

After the audit we concluded that the coordinator had approximately 2 hours over the 4 days to perform non DMT related tasks like typing letters and booking routine review appointments. This equates to 28 hours a week to manage the DMT workload. This was however only a snapshot on an average week and there are many things that can influence workload. Recently, Southampton Hospital changed the homecare company delivering drugs to patients. Patients began to experience difficulties with deliveries and lack of communication, and this had a knock-on effect when it came to our MS Coordinator as she was supporting people with managing this.

Standard monitoring of DMTs is clearly planned and scheduled with patients well in advance; however if blood results are not within normal parameters then standard monitoring must change and in some cases patients may need to go from three-monthly monitoring to monthly or weekly monitoring to ensure safety.

Noncompliance is something that also impacts on workload. Many people with cognitive impairment need regular reminders to ensure blood monitoring is done when needed. The coordinator ensures that a phone call is made or letters are sent to all patients as a reminder a week or two before bloods are needed. However, some patients are reluctant go and have bloods taken especially in times of stress, anxiety or reduced mobility. Covid has made many patients reluctant to go to health care environments to have routine bloods.

The benefits of having a named coordinator has been invaluable to patients; we have many patients that need reassurance around blood results and management plans when results are not as expected. The coordinator can support patients with this when a management plan has been decided with advice from the MS nurse or other members of the MDT team.

This role of the MS Coordinator in the South East Hampshire team has taken 28 hours of DMT management workload from the current Band 7 MS Nurse Specialist in post. This equates to the release of enough clinical time for 58, thirty-minute review appointments per week.

Band 7 nurse 1st pay point gross total hourly wage before deductions is £20.49

Band 6 nurse 1st pay point gross total hourly wage before deductions is £16.52

Band 4 Co-ordinator 1st pay point gross total hourly wage before deductions is £11.53

In the case of the South East Hampshire team, having an MS Coordinator has saved £13,045.76 in comparison to a Band 7 nurse, monitoring disease modifying therapies over 28 hours a week, as well as generating enough specialist nurse time to provide 56 review appointments a week for the service.


More MS Academy Service development Projects

Improving the time frame of verifying outpatient clinic letters
By Lisa Marsh, MS nurse specialist, King's College Hospital NHS Foundation Trust
Optimising MS Nurse Reviews - Shifting Towards a More Patient-Focused Approach
By Denisse Bongol, Clinical nurse specialist, MS, University College London Hospitals NHS Foundation Trust & Jessica Mensah, Pharmacist, University College London Hospitals NHS Foundation Trust
Patient engagement to inform changes in Multiple Sclerosis (MS) services in City and Hackney August 2022
By Sarah German, MS Specialist Practitioner Band 7, Homerton University Hospital NHS Foundation Trust
Encouraging excellence, developing leaders, inspiring change

MS Academy was established five years ago and in that time has accomplished a huge amount. The six different levels of specialist MS training are dedicated to case-based learning and practical application of cutting edge research. Home to national programme Raising the Bar and the fantastic workstream content it is producing, this is an exciting Academy to belong to.