Research by Dr Jane M Anderson
All of our attendees carry out a piece of research in an area of MS clinical practice or treatment that interests them.
This snapshot gives you a quick idea of what they found and why. If you want to learn more, just click through to the full research report, or follow the links within the snapshot.
If you would like to contact the alumni who did the research, drop us a line and we’ll put you in touch where possible.
To find out whether NICE guidance CG186 on giving information and support to newly diagnosed people with MS is followed properly at the researcher’s district general hospital (DGH).
|‘NICE has produced guidance on the components of good patient experience in adult NHS services. This includes recommendations on communication, information and coordination of care.’ (NICE CG 186 1.2.1)|
- The sample was of 17 patients with a new diagnosis of relapsing-remitting MS seen in either outpatient or acute admissions during an 18 month period (2015-2017).
- The researcher examined electronic records of consultations to check standards of care against NICE guidance and created a database specifically for this work.
- The researcher notes caveats that:
- the sample is a very small one given the availability of complete records for the group needed,
- 59% of patients had previous imaging scans, meaning they may have received some information at an earlier time.
- 88% were given good information on MS and symptom management, with strong evidence of holistic management as well: 82% were given information on lifestyle and exercise too.
- 100% received follow-up appointments though at a median of 16 weeks from diagnosis, not within the 6 weeks recommended (capacity restraints cited, see section 1.2.4).
- 70% were referred to, or told of, the MS specialist nurse, though most were not steered towards support groups or charities available.
- The researcher’s own experience suggests this is more to do with patients’ need to process their diagnosis before seeking these services.
- 47% patients discussed plans for relapse management versus 88% for symptom management.
- This was thought to be to give patients time to process their diagnosis before making plans for relapse management.
- Patients are not being advised to notify the Driver and Vehicle Licensing Agency (DVLA) and they are legally obliged to do so.
- To have a standard outpatient coding system or database, making this information more readily available, so helping audit and monitor how well guidelines are being met in the future.
- To have a uniform set of information to give at diagnosis, ensuring everyone receives the same information, and that all essential areas, like notifying the DVLA, are covered.
- To ring-fence a monthly follow-up appointment on each consultant list, making sure there is always space for more rapid face to face follow-up with newly diagnosed patients.
- Alternatively, to recruit a hospital-based MS specialist nurse to cover these follow-ups as part of her remit. (A business case is in process at the time of research.)