The role of the multiple sclerosis specialist nurse

Abstract

M ultiple sclerosis (MS) is a disease of the central nervous system affecting around 100 000 people in the UK. MS is mainly diagnosed between the ages of 20 and 40 years of age, and in women, three times more often than men. It most frequently presents with acute relapses of neurological symptoms followed by some degree of recovery. A secondary feature is chronic, progressive accumulation of disability. Half of those affected by the illness will have accrued some disability within 15 years of diagnosis. Over the past 11 years there has been a huge increase in support of people with MS in the UK, through the government’s Risk-sharing Scheme with pharmaceutical companies to provide disease-modifying therapies to all those who meet criteria, on an access scheme free to patients, and prescribed through specialist centres. Posts have increased from a handful of MS specialist nurses (MSSNs) in 2002, to over 250 today, with a great deal of support from the two main charities—the MS Society and the MS Trust. MSSNs have developed to provide effective management of people diagnosed with and treated for MS throughout the disease trajectory, and lead the way for patients in ensuring appropriate pathways of care are designed, followed and reviewed to provide access to the best possible care in the most appropriate environment. Only a quarter of our patients will meet criteria for disease modifying drugs, so nurses must also focus on living well with a chronic, often disabling disease. There have been new developments in drug therapy in recent years with the introduction of Tysabri infusions and Gilenya tablets, which appear far superior to the now first-line injectable interferon betas and glatiramer acetate. MSSNs have been at the heart of developing new services to safely deliver and monitor novel, higher-risk treatments. Shortly ahead of us, we have National Insitute for Health and Care Excellence (NICE) technological appraisals for four more new therapies (dimethyl fumarate, teriflunomide, laquinimod and Alemtuzumab) and there are challenges ahead for all MSSNs in helping patients to come to terms with these and how they fit into the new treatment pathways. With such a dynamic environment it is essential that our nurses have the highest level of peer support. This can be achieved through the UK Multiple Sclerosis Specialist Nurse Association (UKMSSNA). The UKMSSNA was developed 11 years ago to meet just such a goal. Through educational events, regional meetings, a quarterly magazine and web-based activities, it now reaches around 250 of the UK’s MSSNs. The most appreciated feature is the members queries email list, whereby any member can send a query to our administrator (who will forward to everyone on the list). Several responses can be ensured within a very short timescale, and all queries are then posted on the website. The UKMSSNA has produced several large pieces of supportive work despite having no full-time staff and all committee members being full-time MSSNs. These include a peer-reviewed care manual, an all-inclusive audit tool (CRIMSON), and the report, Adding Value, which demonstrated the cost effectiveness to the NHS of MSSN posts. This demonstrated how much income is generated to trusts by specialist nurses. We are currently stakeholders with the NICE and the Scottish Medicines Consortium for medicines appraisals and care frameworks, and work closely with the MS Society and MS Trust to ensure a fair, equitable access to medicines, services and care is available to all people affected by MS throughout the UK— irrespective of social class or geographical location. It is our hope that NHS trusts and boards will continue to see the value of MSSNs in the UK and support our posts, several of which are already under threat of dissolution, downgrading and specialists being asked to work in wards as no more than healthcare assistants. We want to continue to provide excellent services for all our patients now and in the future.