Ruth Jackson, Haematology Nurse Clinician, discusses setting up and leading a nurse-led MGUS follow-up clinic for patients at Mersey & West Lancs NHS Trust using the online portal My Medical Record.
Could you explain how the service started and what prompted it?
I have worked in Haematology in various roles for over 23 years within Mersey & West Lancs NHS Trust (formerly St Helens & Knowsley NHS Trust). Many patients that required long-term follow-up were waiting several hours to be seen in clinics, despite only having very short consultations to confirm their bloods were stable. I started a nurse-led clinic for MGUS and Chronic Lymphocytic Leukaemia (CLL) patients to ease pressure on the service back in 2010. This was initially comprised of face-to-face appointments, before developing into a telephone clinic and now evolving into a virtual clinic.
In 2019, the Cheshire and Merseyside Cancer Alliance asked St Helens Hospital to pilot a service using My Medical Record to see if it could be used for haematology. My Medical Record allows patients to access their test results and notify their team of any new or changing symptoms. A Band 4 Support Worker was funded to help the process, and a consultant haematologist was also involved to set up a clinical protocol.
How does the service benefit patients?
My Medical Record went live in April 2020. Patients who were registered for the telephone clinic were transferred and attended online workshops for education on using the portal. The workshops were intended to be in person, but due to the pandemic we had to adapt by publishing booklets and directing patients to ‘how to’ videos online for support. We now offer the workshops in-person, which include an explanation of MGUS, red flags for patients to be aware of, and contact details for further support if needed. We also try to explain the relevance of paraprotein to patients. Patients are introduced to the ‘health MOT’, a questionnaire that acts a symptom checker and Holistic Needs Assessment. The MOT is completed every 6 or 12 months and the nursing team are alerted once completed. The programme flags any concerning symptoms and a face-to-face appointment with either a consultant or nurse is subsequently organised. The MOT also screens for any psychological, emotional or social issues that patients may be experiencing, which is useful as HNAs were not being completed in consultant clinics.
Patients seem to be dealing much better with the uncertainty of MGUS with the portal, and a patient experience audit showed that patients preferred not having to take time off work, felt they had better control over their results, and were reassured that they could easily contact a member of the haematology team. It has also been beneficial for the Trust, as having 300 MGUS and CLL patients in clinic has replaced approximately 600 consultant appointments per year. The only negative feedback has been that some patients miss having face-to-face appointments, so we encourage these patients to access support groups.
What resources and staffing are required?
The portal is overseen by a CNS and Band 4 Support Worker. If the CNS confirms that blood results are stable, the Support Worker assesses the rest of the MOT. If any issues are identified, the CNS will determine if further investigations or clinician involvement are needed.
Can you offer any advice for other hospitals wanting to provide a similar service?
Ensure the right patients are chosen. Many MGUS patients have been having follow-up for many years and may find transition to an online portal difficult. Some forget to log on and complete the questionnaires, others do not have access to the internet. Getting the workshop right is also very important as it gives patients the opportunity to ask questions.
Ruth Jackson
Haematology Nurse Clinician
Mersey & West Lancs NHS Trust (formerly St Helens & Knowsley NHS Trust)