Lesions disseminated in time and space - MS awareness week
Multiple sclerosis is the most common neurological disorder and cause of disability in young adults. It has a prevalence of one in 1,000, although this tends to increase, the further north you go. Up to 25% may have a benign, non-disabling course, but others often have a condition which compromises ability to work or care for their family. The largest group has relapsing-remitting MS, where periods of relative good health are sporadically marred by functional decline. These patients are seen less and less in primary care (apart from for diagnosis) and when they do present, it is important we can offer them appropriate support and advice, even if opportunistically. The RCGP has an online course - Multiple Sclerosis in General Practice, available at www.elearning.rcgp.org.uk - which covers dilemmas in diagnosis, evidence-based management, multidisciplinary care and psychosocial aspects of MS. It takes three hours approximately to complete. It was designed in partnership with The MS Society, and both they and The MS Trust have excellent websites which are worth patients knowing about.
In the last ten years there have been several changes in MS care that have impacted on patients and their GPs and may have contributed to us seeing them less often. The risk-sharing scheme was adopted in 2006 and led to the wider availability of interferon. The premise was that the NHS and the drug companies would work together to increase the number of patients receiving disease-modifying therapies; more patients would have access to treatment and high-quality research (as to their efficacy) would be generated as a result. This was largely absent prior to this point. Before this decision there was little long-term advice to offer patients with MS, apart from empirical advice on diet and lifestyle and psychological support against the sword of Damocles perpetually hanging over them.
Arguably greater than this initial decision by the government, was the ensuing impact it had on treatment research, which has ballooned, spurred on by the promise of NICE approvals and widespread prescribing for thousands of patients. Recent years have seen a huge expansion in new therapies and even the first oral treatment (also approved by NICE) becoming available - Fingolimod® . Earlier therapies such as the interferons had relapse reduction rates of around 30%, but newer treatments (eg, natalizumab) have at least doubled that and improved the quality of life for those eligible for them.
However, the greatest impact, in my opinion, has come from the rise and rise of the MS specialist nurse. This group of clinicians has firmly taken control of MS care. They are available for advice, assessment and support for patients and GPs if not immediately (by mobile phone) then usually within 48 hours. They see patients at home and develop relationships with them and their families or carers and also have their own clinics and advise on a wide range of issues related to the condition. They meet regularly at professional conferences, where best practice is discussed and shared. For most patients they are the first point of contact. If your patients don't already know who their MS nurse is - they need to.
We will be updating our MS page next year (2014) after NICE publishes its latest guidance. This month we have updated our pages on subfertility investigation and management, after the latest NICE guidance was released in February 2013. We have also produced new evidence-based advice for patients who are pregnant. A full list of new and revised content is available at: http://patient.info/content-updates.