Many MS nurses are reluctant to discuss disability with newly-diagnosed patients

A survey of people with multiple sclerosis (MS) finds the effect of MS symptoms on everyday life is their biggest concern.

MS can cause a wide range of symptoms, and each person with the condition is affected differently. For some people the symptoms develop and worsen steadily over time, while for others they come and go.

The Missing Pieces report, published on July 12, states that nearly two-fifths (38%) of people with MS surveyed rank the impact of MS symptoms on everyday life as their biggest concern.

Only 4% said their main worry is relapse.

According to the report, which was developed and funded by Sanofi Genzyme, the finding suggests patients are most concerned with disability.

Healthcare professionals surveyed said disability is routinely discussed with people newly diagnosed with MS 69% of the time. 

However, only half of people with MS could recall discussing disability at diagnosis stage. 

Nearly two-thirds of MS specialist nurses (64%) agree that there is a reluctance among healthcare professionals to discuss potential disabilities with MS patients. 

However, only 43% of neurologists specialising in MS and 49% of general neurologists agree there is such reluctance.

Relationships

Commenting on the report, Northampton General Hospital NHS Trust MS specialist nurse Emma Matthews said a reluctance to discuss disability may be more apparent among MS nurses because of their relationships with patients. 

People with MS conduct most of their conversations about the condition with MS nurses, the report said, while Ms Matthews added that neurologists generally ‘diagnoses and reports on the outlook’. 

She raised concerns about discussing disability at an early stage. 

She said: ‘Because it is so complex and unpredictable, some patients have relapse remitting MS and, 40 years down the line, they are managing well with little disability.’

She added: ‘If we say “you could end up with marked disability”, is it appropriate? It may not be true.’ 

Among its recommendations, the report states that people with MS should understand their diagnoses, prognoses and care pathways, including the impact on their physical and mental abilities, now and in the longer term. 

Nearly one quarter of people with MS (24%) are unaware that treatments could help delay the onset of disability, and disability is discussed at only 34% of appointments, the report found.

Two online surveys were conducted by Adelphi Research in 2016 for the report – one of 100 healthcare professionals including MS specialist nurses and the other of 120 people with MS. 

The report also found that: 

• 74% of healthcare professionals think MS patients face delays in starting disease-modifying treatments.
• Only 21% of UK MS patients receive DMTs. This is one of the lowest rates in Europe.
• 62% of MS specialist nurses and 47% of MS specialists think that this delayed initiation is due to a ‘lack of healthcare facilities’.

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