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The Scottish MS Register: Is the number of people newly diagnosed with MS in Scotland lower than previously thought?

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Last week the Scottish MS Register published its five-year report on incidence of MS in Scotland. Geraldine Mynors, Programme Manager of our GEMSS project, reports on some surprising findings

Unlike the UK MS Register, the Scottish MS Register is a register of the incidence of MS – that is, new cases of MS diagnosed by a neurologist. It collects data about the person’s gender, age, country of birth, how they were diagnosed and what type of MS they were diagnosed with, as well as data about how the MS service did against the Health Improvement Scotland quality standards for MS – particularly the standard that an MS nurse should make contact with someone newly diagnosed with MS within 10 days.

The data from the new report published last week is quite surprising, consistently showing that the number of people newly diagnosed in Scotland between 2010 and 2014 averaged around 430 a year. This is quite a lot less than the 'best estimate' published by the MS Society, which suggested that probably around 666 people are diagnosed in Scotland each year.  There was a big discussion at the meeting about why this might be the case.

On the one hand it might be that the register isn’t capturing everyone who is diagnosed, but this seems unlikely as the systems for collecting data are very robust. People are only diagnosed with MS in a relatively small number of neurology centres and they are all committed to keeping the register accurate. Dr Paul Mattison, a Consultant Physician in Ayrshire who also chairs the Register Steering Group, gave a presentation showing an audit of MS diagnoses in Arran and Ayrshire Health Board using GP records, and they found a very close match to the number of new diagnoses reported in the MS Register.

A second possibility is that the rate of new diagnoses in Scotland is falling – which would be very good news.  However, the bottom line is that we just don’t know, and more work is planned to look at incidence and prevalence in other areas, such as NHS Lanarkshire.

The report also revealed that specialist nurses are doing very well on seeing people who are newly diagnosed with MS. Most of the delays (where these occurred) were because they weren’t being told quickly enough about new patients, often because of the time taken for a consultant neurologist’s letter to be typed and sent.  When they know about a new patent, they usually see them very promptly.

However, the Register data doesn’t tell us about how MS specialist nurses are doing on other quality standards for people who have had a diagnosis for some time.  Mhairi Coutts, MS Specialist Nurse from Lanarkshire who runs the Scottish MS Specialist Nurses Group, gave a presentation in which she highlighted the heavy workloads for many MS nurses and how this makes it difficult for them to give everyone on their caseload the care and attention that they need. In her own case she has a caseload of more than 1300 people with MS.

The MS Trust Case for Equitable Provision report (PDF 1Mb) highlights that MS specialist nurses in Scotland have the highest caseloads of anywhere in the UK, and there are four health boards (Greater Glasgow and Clyde, Lanarkshire, Forth Valley and Lothian) where caseloads are more than twice the recommended sustainable level of 358 people with MS per MS nurse.  In Scotland there are currently around 28 specialist nurses (or 22 whole-time equivalents, when part-timers are taken into account), when there should be at least 31.  The fact that some areas are so rural, with huge travel times for nurses to get to community clinics or do home visits, makes this worse. We are continuing to campaign and work with local health services to help ensure that everyone with MS can access the best possible care. Look out for the final report of our GEMSS project this November.

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