According to a new report published today by the MS Trust, growing pressures on NHS services mean people with progressive MS get much less support from specialist health professionals than people with relapsing remitting MS. As well as seeing health professionals less frequently, many people with progressive MS report being ‘abandoned’ by specialist services just as they enter the progressive phase of the disease, marked by complex symptoms and increasing disability.
The report Is MS care fair? is published today to mark the start of MS Awareness Week 2016. The MS Trust surveyed over 1,800 people living with MS. We found that, while almost 80% of people with relapsing remitting MS had seen their neurologist and MS specialist nurse in the past year, around 40% of people with progressive MS hadn’t seen either of these key health professionals. 12% of people with progressive MS reported receiving no specialist support at all in the last year.
Furthermore, 40% of people with secondary progressive MS, whose disease transitions from the relapsing form to the progressive, reported seeing less of their specialists once their disease became progressive. Many reported being effectively ‘discharged’ from the care of their neurologist and their MS specialist nurse and left to manage alone, with increasing disability and more complex symptoms. People with progressive MS may need to use a wheelchair or stay in bed, may require help eating, and may have severe cognitive difficulties and significant speech problems.
“These findings give us a vivid picture of how people with MS feel about the state of MS services today,” said Amy Bowen, Director of Service Development at the MS Trust. “They demonstrate the urgent need for new thinking to make MS care fair. We need to assess the challenges facing MS teams, including the impact of administering and monitoring disease modifying drugs, and develop new ways of delivering services that work for everyone living with MS, no matter what type of the disease they have.”