Author: Megan Roberts
I have been an MS Specialist nurse in one guise or another for more than 25 years. I have worked as an MS nurse in the NHS, pharma and the voluntary sector.
When I first started working with people with Multiple Sclerosis (MS) there were no disease modifying treatments (DMTs) available and very few MS specialist health professionals working in any discipline. Treatment consisted of intravenous steroids for relapses and sometimes the option of an inpatient admission to manage MS symptoms and complications.
Due in large part to the proliferation of DMTs, there are now many more MS specialist health professionals, and particularly MS nurses, in post. The advent of the role of the MS nurse alongside the development of DMTs has meant that, thankfully, the care and treatment available to most people with MS has improved immeasurably over those 25 years.
The first disease modifying treatment (DMT) was approved for use in the UK in 1996. My first position as an MS Specialist nurse came about entirely due to this as the Neurologists recognised the need for a nurse to advise people with MS (PwMS) and to train and support them as they learned how to self-inject and to manage the side-effects of the DMT.
When I first came into post, my role was strictly focused on pwMS who were prescribed DMTs, however, being aware of the huge unmet need amongst pwMS who were not eligible for these treatments. I was able to make the case for my role to be extended to provide support for anyone with MS quite early on in my career and have spent the last 25 years or so, fighting to improve services and provision of care for everyone with MS – not just those prescribed a DMT.
Whilst the development and proliferation of more effective DMTs in the last 25 years has made a huge and welcome difference to people diagnosed with MS, it has also impacted significantly on the role of the MS Specialist nurse.
MS Nurses have had to become much more DMT focused – often to the exclusion of all those people with MS who are not taking a DMT, which are in fact the majority of pwMS. A recent paper estimated that just 39% of pwMS in the UK were currently prescribed a DMT, suggesting that 61% are not on treatment (Rog et al, 2021).
I do not suggest that MS nurses are actively choosing to ignore all those people with MS who are unable to take DMTs, but that this is the result of low staffing levels combined with the requirement to monitor and support people taking DMTs in order to minimise and manage potentially serious side effects – leaving many MS nurse teams with no choice at all (Roberts et al, 2021).
The role of the MS nurse today requires a great deal more monitoring, checking, measuring; and with every new DMT, an increasing understanding of quite complex neuroimmunology than was required when I first came into post. However, at its core, I think that the role of the MS nurse remains the same as it did when I started more than 25 years ago – to listen, hear, explain, empathise, advise and walk side by side with the people with MS we care for – even for just a little time.
MS Nursing is (or should be), part science, part art – and mostly heart. Living with MS is hard. Our job is to make it a little easier.
It is too easy in our highly pressured roles today to focus on the medications rather than seeing the whole person in front of us. It is also far too easy to pretend that people with MS who are not eligible for DMTs are not a problem because they are not visible – they are not sat in front of us – but they should be – or rather we should be sat in front of them. In the UK we estimate that approximately 30-40% of people have advanced MS (Roberts et al, 2016)– many of these people do not have ready access to an MS Nurse because their MS nurses no longer have the time, capacity or resource to be able to see everyone on their caseload (Mynors et al, 2016). I believe that part of the role of the MS nurse is to fight and to make the case to build local resource and capacity to ensure that everyone with MS is able to see an MS nurse when they need to.
There is never ‘nothing that can be done’ – whether it is listening to the fears and anxieties of someone newly diagnosed with MS or doing the same for someone who may be severely disabled due to their MS – listening and letting them know they have been heard and understood and that you can empathise with their situation makes a huge difference – and there is almost always something an MS nurse can suggest or advise – even if it is just a repeat visit in a month’s time to listen and talk some more.
Living with MS is hard – even for people who are well-controlled on medication, there is always the fear that one day their medication will stop working, or they will develop some of these side effects they have heard about. People with advanced MS and their families are often coping alone with symptoms which impact on and limit every aspect of their life from eating to thinking.
The role of an MS nurse is to walk alongside everyone living with MS – even if for just a little while- and to do anything they can to make their lives a little easier – with all the science and heart they have.
