Neurologist Dr Paul Molyneux and MS specialist nurse Ruth Stross both sat on the editorial panel for MS Decisions. Here they explain why they got involved and how they believe it will help them help people with MS.
Dr Paul Molyneux, neurologist
When I started as a consultant 13 years ago, the only therapies we could offer were injectable, the choice being between one of the interferons and Copaxone. We now have a wide and diverse range of therapies, with choice of therapy now becoming a much more complicated decision. While this choice is to be welcomed, it does bring with it some difficult decisions that doctors, people with MS and their relatives now have to make.
These issues take time to explore and explain and I see my role as providing as much information as possible for all those treatments that are appropriate for an individual patient. I try to explain that not all treatments will be available for an individual person with MS, and focus on those treatments that are applicable.
I was really excited about the opportunity to update MS Decisions, bringing it up to speed with all the new treatments and helping make these difficult decisions. Anything that can help people with MS in making the correct choice is to be welcomed. This resource creates opportunity to complement the face-to-face discussions in clinic with something that people can use in their own time, to come to an appropriate decision.
It has been really exciting to have been involved in helping develop this resource. With such a vast amount of information available on each of the treatments, finding a way of condensing this into a format that is easy to use has been a huge challenge for everyone who has worked on it. Finding the right balance between providing enough information, on the one hand and not deluging people with a vast array of highly technical data has been a challenge, as everyone’s needs will be slightly different, but I sincerely hope the up to date MS Decisions tool has got the balance right.
It will continue to do what the older version did, but update for the modern era of MS therapies. If it achieves what we hope, it will provide a really valuable addition to the work of the MS Team in providing the right amount of detail, at the right time and in the right context for people facing decisions around treatment.
Ruth Stross, MS specialist nurse
MS drug treatment has seen incredible changes since I first became a nurse. In the old days, MS had been mostly crisis managed: symptom and relapse management was extremely basic and often needing people with MS to stay for long inpatient admissions. People trying to cope with the after effects of a relapse were often hospitalised and the subsequent deterioration and progression in their MS impossible to avoid.
Since then the situation has changed from a basic offering of a few oral symptom management medication like Baclofen and Oxybutinin to the advent of over 10 licenced DMDs for MS. From no choice to a confusion of choices! This development over the last 15 years has been unbelievably exciting to be a part of and to watch how these medications have given people with MS hope and an alternative to the previous diagnosis conversations of "there isn’t much we can offer."
As a community-based nurse I have a need for clear advice on the MS drugs and I need to have access to updated information in the clinic room. Paper versions are excellent but become out of date quickly so I know I will use the new website frequently. The MS Trust is so well respected for their publications and support they provide that the new MS Decisions website already has a great platform.
It is always a pleasure working with the MS Trust on projects like MS Decisions. The mutual respect and acknowledgement of relevant knowledge and expertise from both parties is always there.
I think we now have a deeper understanding of the complexity around the decision making and the joint working between MS specialist services in hospital and the community. I think MS Decisions is going to be a great help for everyone involved: people with MS, neurologists and specialist nurses.