The first blog article from our new ‘A Day in the Life’ campaign is one for sharing and reflection. Experienced MS nurse Vicki Vicki Matthews writes about the transition from the “diagnose and adios” approach in multiple sclerosis management to a more patient-centered system.
I get a mix of excitement, fulfillment and longing when I reflect on my experience of caring for people with multiple sclerosis (MS) over the last 30 years.
Looking back I can say that the pace of change over these three decades has resulted in a more collaborative approach to managing MS. One of hope, early intervention and the aspiration of NEDA – no evidence of disease activity.
I believe it is exciting to see a range of treatments that enable us to induce or escalate therapy, delay onset of disability, and work alongside people with MS in making choices. Furthermore, it is encouraging to consider the advances that will be made in the next decade.
Change for the better
People with MS are doing better. They are no longer passive patients of inadequate interventions or care. Instead, they share decisions and choices. They have also enabled health professionals to change. As a consequence, our approach to MS is different today.
Many years ago, I met a 73-year-old woman with MS living life independently and well. Her great sadness was not her MS. It was that when diagnosed she was told never to have children. How times have changed!
When I became a nurse healthcare professionals used the “diagnose and adios”. People with MS were told to just get on with their lives. The only routine treatments focused on physical symptoms which were often inadequately prescribed. Silent and hidden symptoms of MS were neither understood, discussed nor managed. Now we place equal merit to every aspect of living with MS.
MS specialist nursing
People with MS have always valued good nursing care but expert MS Specialist Nursing (MSN) is relatively new. There is also clear disparity in the nursing care of people with MS across Europe.
The partnership between the persons living with MS and their MSN endures across the MS trajectory. Although the discrete and complex nature of MS specialist nursing makes it difficult to measure, an increasing body of evidence together with political lobbying from organisations such as EMSP is raising the recognition and value of the MSN.
EMSP’s MS Nurse Pro education programme and the planned European network of MS nursing will impact on the care that people with MS receive. This is very fulfilling!
People with MS, lonely no more
MS can be a lonely place. Many years ago I was the only nurse who cared for people with MS in my hospital. That was lonely too. Now we are building a family of expert MS nurses across Europe.
Collaboration between many different groups involved in MS is changing culture and attitude towards those who live with it. Gone are the times of patronising beneficence when people with MS were helpless recipients of charitable interventions. Now they are sharing the platform with doctors, nurses, scientists, politicians and others.
Younger patients are pro-active users of social media thus transforming the inter-connectedness of the MS constituency. They are informed and alert, and they enable an honest and authentic communication between people with MS and healthcare professionals.
New era for MS management
New technologies are transforming the way health services are managed and delivered to the MS patients. They are also changing the way people with MS manage their daily lives – even becoming therapeutic in their own right. New apps are being developed to manage symptoms such as fatigue, anxiety and cognitive dysfunction.
It is extraordinary to look back at how much has changed for me as a nurse and for people with MS in 30 years. But there remain longings too: that people with MS can remain fully engaged in life throughout; that they can expect to be symptom-free with no sign of disease activity; but most importantly that they can be told “You have MS but we have the cure”.
A Day in the Life
Vicki Matthews is a member on the steering committee of EMSP flagship MS Nurse Professional project.
Our ‘A Day in the Life’ blog campaign aims to paint a vivid picture of living with MS through the testimonies of people both directly and indirectly affected by multiple sclerosis, from MS advocates to healthcare specialists.