Opinion

Making care for people with MS equitable, effective and efficient

Megan Roberts, the MS Trust’s specialist nurse and advanced practice advisor, highlights the findings of the charity’s MS Forward View report.

Megan Roberts, the Multiple Sclerosis (MS) Trust’s specialist nurse and advanced practice advisor, highlights the findings of the charity’s MS Forward View report


The MS Trust worked with individuals and organisations from across the MS sector. Picture: Alamy

The MS Trust has just published its final report, summarising the findings and recommendations from a year-long project to explore the challenges of making care for people with MS equitable, effective and efficient.

Twenty years ago there were hardly any services for people with MS. In fact, there were just a handful of MS specialist nurses and a few neurologists with a special interest in the area.

Today there are 241 whole time equivalent MS nurses in the UK, as well as much greater numbers of neurologists and therapists with an in-depth knowledge of MS.

This is due in part to the development of disease-modifying drugs (DMDs) for people with relapsing MS. However, less than half of people with MS on a typical caseload will benefit from the drugs, and only 56% of those with relapsing MS are being treated. While these drug treatments are essential for people with this type of MS, they also require complex and extensive monitoring regimes, which can squeeze services for other patients.

Redressing the balance 

When it comes to symptom management and neurorehabilitation, the needs of people on DMDs have overtaken the needs of others, particularly those with advanced MS. It is necessary to restore the balance between safe prescribing, monitoring and reviewing for people taking DMDs and delivery of holistic, multidisciplinary care across the whole disease trajectory.

The MS Trust worked with individuals and organisations from across the sector, including people living with MS, other voluntary agencies, health professionals, professional bodies and the pharmaceutical industry, to develop a consensus setting out the priorities for change that are needed across health services to make care for everyone with MS fair.

These include ensuring every MS service has a professional lead for advanced MS. This person should be responsible for involving the wider network of services people with complex needs require as well as making sure that both people with MS and other healthcare professionals are aware of what services are available. We know that people with advanced MS often feel that their needs are not met by current service provision and engage less often with MS nurses and neurologists.

The recommendations in MS Forward View aim to help services redress the balance and ensure that everyone with MS receives the care they need whether this is DMD management, symptom management, neurorehabilitation or a combination of all of these.


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About the author 

 

Megan Roberts is the MS Trust’s specialist nurse and advanced practice advisor

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