On 1st and 2nd November, a gathering of health care professionals, service providers, charities and planners came together to hear eminent individuals presenting the current challenges in, and barriers to, delivering equitable and optimal care for people living with multiple sclerosis (MS).
During the course of the two day meeting, the way forward to ending variance in MS services was broken down into three core pathways: patient empowerment and activation, data collation and interpretation, and education across both professional and patient communities.
Challenging presentations questioned everything from implementation of the NHS England ‘treatment algorithm for MS disease-modifying therapies’ (DMTs), to whether the expanded disability status scale (EDSS) is the best marker for measuring disease progression in terms of data gathering, to what constitutes an empowered patient and how the professional community can better enable this. The room was tasked with questioning, dissecting and debating each topic in relation to MS support, looking to decrease variation and optimise services for those living with the neurological condition. One of the biggest take-home messages was that ‘change starts with us’ in clinical practice, summed up succinctly by Jerry Clough of OPTUM, who began his address to the room with ‘You are the apex of this service’. Highlighting that to wait for commissioners or service planners to instigate dramatic and lasting change is not the answer, he was one of many voices calling for change from within professional practice itself.
Similarly essential and impactful was the need to empower people with MS, or ‘MSers’ as the community refer to themselves, to selfmanage and lead on their own condition and care, and to be equal partners in the design of MS services and support. George Pepper, MSer and founder of ShiftMS closed his keynote speech with the challenge: ‘We must engage the more passive MSers to be more active in managing their own condition’.
The level of work to be done is vast, and yet in breaking it down into each individual’s service delivery, patient interactions and chosen fields of research, real progress can be made now. Core areas of work have already begun to make headway, and professionals and people with MS alike can begin to get involved in the movement to reduce variance now.
Rachel Dorsey-Campbell, neuroscience pharmacist at the Imperial NHS Trust, presented on a project she and colleagues have already begun in breaking down the monitoring essential to safe delivery of DMTs and calculating the associated – and as yet, unmet – costs. Rachel presented initial data finding that, with over 20,000 patients on a DMT, the cost in blood tests alone is in excess of £350,000 each year. Taking into account the cost in time to a specialist nurse or pharmacist – a time burden calculated at over 26 hours per month – and the annual, currently uncommissioned, cost in staff time could be as much as £1.2 million.
This key project is just one of many strands of work beginning to unpick the problems to better inform the solutions, and alongside podcasts of all the presentations given at this event, is available on our website. We invite you to join our community, dedicated to ending variance in MS services and support, and get actively involved; you can follow the progression on Twitter by searching #MSVariance and learn more about opportunities to join bodies of existing work on our website.
To find out more specifically about the DMT monitoring project, listen to Rachel’s full presentation and read a more in-depth coverage of the project to date, at www.multiplesclerosisacademy.org or contribute to the project here.
