In many ways, multiple sclerosis is an exemplar condition. There are approximately 100,000 people with a diagnosis of MS in the UK, making it the larger of the small number conditions. MS is a relatively uncommon condition with an increasingly complex range of disease modifying treatment options provided by specialist services. Yet its lifelong and largely progressive trajectory means there is equal need for much more commonly required comprehensive, locally provided services to manage symptoms and maintain participation.
In the new landscape of the NHS, this places MS in the uncomfortable position of straddling specialised and clinically commissioned services. In truth, this means two sets of cash-strapped commissioners with often irreconcilable objectives to reduce their scope of responsibility or effectively manage the tension between generalist and specialist provision. The person with MS and the people who care for and about them, care little about who holds the budget or how the money flows. What matters is the availability of responsive services, provided by people who have a proper understanding of the nature of the condition, who can offer access to the treatments they require. Not too much to ask.
The current reality is frustratingly different. Under pressure to make savings, some clinical commissioners are looking at more generic models of service provision – diluting the availability of locally based specialist practitioners, such as MS specialist nurses and allied health professionals and instead establishing posts who are ‘specialist’ in a number of long term neurological conditions. In effect, this means trying to provide expert sub-specialist care, balancing the demands of a mixed caseload involving conditions with very different trajectories and maintaining adequate specialist knowledge in the fast moving waters of an increasingly varied and complex choice of treatment options.
Not all MS services will or should be provided by specialists. The numbers are too small and the needs too long term to make a specialist-only model viable or appropriate. What is critical, though, is that there are enough specialists throughout the system to support non-specialist services to provide those elements of high quality care for which they are responsible. If the specialists are all located in prescribing centres, those elements of a comprehensive MS service that are more appropriately offered in the community will struggle to maintain their knowledge-base or retain timely access to the support and advice they need to manage the complex and changing needs of people with MS. Community based specialists, like MS nurses, are essential in straddling the divide between specialised and clinically commissioned services, and their future needs to be secured. They also need to be connected to the specialist centres not only for their own development but also to facilitate smooth movement for patients between the centres and locally delivered services.
Nonetheless, however services are configured and provided, people with MS will derive the greatest benefit from care provided by professionals who have the greatest level of understanding of the condition and its best management. The MS Trust has a longstanding commitment to the specialist practitioners who work with people with MS. Professional development for MS nurses and AHPs and, increasingly, neurologists and rehabilitationists, is a core activity for the MS Trust. We have a comprehensive Health Professionals programme, including training for new in post MS specialists, masterclasses, study days, the flagship conference for MS specialists and an annual educational meeting for MS specialist nurses. Through our GEMSS programme, we collect evidence on the value and impact of specialist services and we provide bursaries for all MS professionals to extend their knowledge and skills in MS care.
Rehabilitation programmes are an aspect of MS care that are vitally important and yet remain under-recognised for their role in improving function and participation. Historically, rehab services have struggled to gain the visibility or attract investment of the scale seen in, for example, the development and provision of disease modifying and symptomatic treatments. The profile of rehabilitation, growth of the evidence base and a strong set of outcome measures must remain a priority in the overall landscape of MS care. It needs to remain high on the agenda of specialised and clinical commissioners alike.
This year, the MS Trust is delighted to be part of a unique opportunity for those with an interest in MS from all the health professions to help raise the profile of rehabilitation as an essential part of MS care. In partnership with the MS team at University College Hospital London at Queen Square, we are bringing the Rehabilitation in MS (RiMS) conference to the UK for the first time. RiMS is the European network for best practice and research in MS Rehabilitation. Now in its 19th year, it represents and brings together health care professionals, researchers and patient organisations from different settings with the aim to enhance activity, participation and autonomy of people with MS by developing and advocating evidence-based rehabilitation. The long-term vision of RiMS is that all people with MS throughout Europe have access to evidence-based rehabilitation when they need it.
This year’s conference is in Brighton on 6th and 7th June, with an additional half day MS Masterclass being offered at Queen Square on 5th June. There is a world class multidisciplinary programme covering clinical practice, latest research evidence, exploration of methodological issues in rehabilitation research and a pan-European perspective on service improvement. The conference is for all health professionals working in MS and those with a research interest in rehabilitation. More than 350 delegates are already registered, but a limited number of places are still available – visit www.rims2014.org to book your place.
Amy Bowen, Director of Service Development, MS Trust.