New MS Trust report highlights inequality in MS care

A new report published this week by the MS Trust finds that many MS specialist nurses are routinely managing more patients than the recommended caseload. As a result, people with MS are missing out on the vital care and support they need and deserve.

This report follows on from the 2016 MS Trust Nurse Mapping Survey, which found that around 64% of people with MS lived in areas where there aren’t enough MS nurses.

Although the MS Trust’s latest research shows that there has been a welcome increase in the number of whole time equivalent MS nurses over the past two years (up 4% to 250 from 241), up to 77% of people with MS are living in areas where MS nurses have caseloads in excess of a new sustainable caseload figure of 315. Of those people, nearly a quarter (26,000) live in areas where caseloads are twice the recommended level. 

The report also found that there remains considerable variation in the levels of nursing provision across the UK, with the most significant shortages in England and Scotland.

The report concludes that up to 105 new MS specialist nurses are required to ensure everyone with MS in the UK can access the specialist support they need.

The current recommended caseload figure for MS specialist nurses is 358, but independent research commissioned by the MS Trust and conducted by Professor Alison Leary found that as MS services and the demands on MS nurses have changed, this is no longer sustainable.

The research found that a considerable amount of work is being left undone, and people with MS are missing out on psychological care, symptom management and medicines management as a result. It recommends a caseload figure closer to 315 patients per MS specialist nurse.

The MS Trust will continue to work tirelessly to fund and support MS nurses and make sure nobody has to manage MS alone.

The landscape has changed significantly since our last MS Nurse mapping exercise in 2016. We now have more disease modifying drugs being made available, more requirements for complex monitoring and many MS nurses carrying out non-specialist work. Whilst we welcome the increase in the number of nurses shown in the 2018 census, the increasing complexity of the role and the additional tasks MS specialist nurses are expected to take on, mean that even more MS nurses are needed. As a consequence of this, the number of people with MS living in areas that don’t have enough MS nurses is growing.

Jo Sopala, director of health professional programmes at the MS Trust