A major new report published by the U.K. MS Trust has determined that the country’s National Health Services (NHS) programs relied on by people living with multiple sclerosis (MS) are facing increasing pressures that could lead to inequities in care.
Evidence from the Letchworth Garden City, Hertfordshire based MS Trust’s three-year GEMSS evaluation project provides unprecedented insight into the state of MS services at a crucial moment in their development. Collecting data from 16 MS teams who provide services for over 15,000 people living with MS, the GEMSS research demonstrates the vital service provided by MS specialist nurses and the value they deliver, highlighting the challenges they face in providing care.
For the GEMSS evaluation projects, the MS Trust worked with MS specialist nurse teams around the U.K. to evaluate their services. The overall final report of this work, together with a report describing and evaluating the process, was published on 10 November 2015. You can download the full report here or the Executive Summary here.
An estimated 100,000 people in the U.K. have MS, with around 100 people being newly diagnosed each week. The neurological disorder is three times more common in women than in men and no two people will be affected in the same way. The MS Trust says this unpredictability often presents the greatest challenge to people diagnosed with MS, and to their families and friends.
The GEMSS report reveals that people with MS in the U.K. typically rely on their MS specialist nurse for expert knowledge, support and continuing coordinated care, and that patients are more likely to turn to them than to any other health professionals — including neurologists and general practitioner (GPs). Without MS specialist nurses, people with MS say they would have to manage alone, or seek care from overstretched GPs or even hospital A&E (emergency) departments without specialist knowledge and experience, all at an increasing cost to the NHS, making MS specialist nurse cutbacks a false economy for the national health care provider.
Challenges Facing MS Care
The GEMSS report data reveal that more and more of MS specialist nurses’ time is being required to support people taking disease modifying drugs (DMDs), and the MS Trust is aware of growing pressure to increase the U.K.’s comparatively low treatment rates. However, they note that half of the people living with MS in the U.K. have progressive forms of the disease and are not eligible for these treatments. Persons with MS have complex and challenging care needs, but with a greater focus being placed on drug management, concerns have arisen that it will be increasingly difficult to deliver equitable service for everyone with MS.
The report also reveals that people with MS are finding it hard to access MS education and symptom management courses due to the pressures on specialist nurses time and resources. Training under these programs can help people living with MS self-manage difficult symptoms such as fatigue, pain, bladder and bowel problems, visual disturbances and mobility problems.
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