'Towards a healthier future' - the South Central SHA vision
Response from the Multiple Sclerosis Trust
As part of our response to the SHA 'Towards a healthier future' vision we would like to quantify the number of people with MS within the geographical area and set an outline of the impact of the condition.
MS in the South Central SHA
There is no national register of MS so no exact figures exist. The estimated standard prevalence rate for the UK is that 100 -120 people per 100,000 population have MS[1] and recent data suggests that the prevalence of MS may actually be on the increase. This gives an estimated population of circa 5,440 people with MS in the South Central, given the population under discussion. Their exact distribution is not known. Incidence is estimated at 4 per 100,000 per annum, which gives an approximate incidence of around 180 new cases per year in the South Central SHA.
Incidence in adults and children born in Europe is broadly similar to that of the UK. Incidence is lower in adults who have migrated to the UK from Africa and Asia but is the same in British-born children of these immigrants or children who immigrated before the age of 15.[1]
Multiple sclerosis is the leading cause of disability in young adults. People are typically diagnosed at a median age of 30 years. Over time, MS normally becomes progressive, debilitating and causes complex disability. Life expectancy with MS is similar to normal so consequently management of MS is a long-term team effort.
MS is a variable condition. However, the majority of patients will develop a range of fluctuating symptoms, both physical and cognitive, which take time to assess and manage. Additionally, significant levels of coexisting conditions such as depression are found in any MS patient population.
Studies have estimated that within five years of diagnosis, 70-80% of people with multiple sclerosis are likely to be unemployed.[2] European studies also estimate that health costs for individuals with MS who are not well-supported run in significant excess of £40,000 per person per year.[3] Recent research suggests that treating relapsing/remitting MS around the time of diagnosis with an immune-modulator will postpone long-term disability.[4]
We recognise that in comparison with other long-term conditions such as COPD, Diabetes etc, MS has a low incidence but we hope that there is a recognition within the SHA as to the impact of the condition on individuals and also a recognition about the potential cost of MS if it is not appropriately managed.
Detailed response to the Vision
The MS Trust is very disappointed to see that the Vision does not identify a single neurological condition, not even stroke, as a potential long-term condition. We do however welcome a multi-disciplinary approach to the management of long-term conditions.
We broadly welcome an approach that plans to provide specialist services in the community rather than in acute care. However, we are concerned about how such an approach will be provided in practice. The NICE Guideline for MS states that every healthcare commissioning authority should ensure that all people with MS have ready access to a specialist neurological service, for diagnosis of MS initially, and of subsequent symptoms as necessary.' We are concerned that the whole thrust of this Vision does not recognise the need to refer to specialised secondary and tertiary services where appropriate. For example, you state that 'systematic assessment of risk in primary care will lead to earlier diagnosis and definitive management of long-term conditions.' MS, in common with a number of other unusual long-term neurological conditions such as MND and Parkinson's Disease, requires a differential diagnosis that may only be achieved following a number of tests not all of which may be suitable for integrated clinical assessment units in community settings (eg lumbar punctures, visual evoked potential tests).
However, we are very pleased to note that care pathways for Long-term Conditions will include rehabilitation. Access to specialised neurological rehabilitation is also a requirement of the NICE MS Guideline, but the recent audit by the Royal College of Physicians with the MS Trust has shown that this is the specialised service least accessible to anyone with MS.[5] Neurological rehabilitation is essential to get people with MS back to work after a significant relapse or indeed back to a reasonable level of function which leaves them less dependent on health and social care services.
Our experience with specialist health professionals working with neurological conditions in the community is that while people with the condition value this service immensely, the professionals can become very isolated, leading to staff burnout and loss of expertise. Clinical networks, such as neuroscience networks, operating across an SHA area, can resolve some of these issues. Benefits are also seen in developing current and future clinical leaders, improving and developing services, raising morale and offering significant opportunities for continuing professional development both formally and informally. Potentially the opportunities are also there to develop such a network that might work across health and social care, which would be true innovation in this field.
We know that most PCTs are unaware of the prevalence of any long-term condition that is not included in QOF returns from GP practices. We hope that the SHA will think about epidemiology and developing potential registers of neurological conditions such as MS. Without adequate data on the number of people with a specific condition, and the level of disability of that condition, how can effective services be effectively commissioned to ensure that they are well managed and are not unnecessarily expensive to the regional NHS? In this context the MS Trust has been leading a group of organisations to produce an MS commissioning Pathway. The groups involved include the Department of Health, the Association of British Neurologists, the Royal College of Physicians, the Royal College of Nursing as well as commissioners, patient organisations and commercial organisations. The resulting pathway built using NHS recognised software is due to be launched very shortly, and will be available on the MS Trust website and the website of Pathways for Health in due course.
About the MS Trust
The MS Trust is a charity which works with and for the 85,000 people in the UK with MS. Our vision is to enable people with MS to live their lives to the full. We provide:
- information that is tailored to what people want to know
- education for health professionals about what people with MS need
- research into better management of MS
- support for anyone affected by MS
References
- Compston A, et al.McAlpine's Multiple Sclerosis. Fourth edition. London: Churchill Livingstone; 2005.
- Kornblith AB, et al. Employment in individuals with multiple sclerosis. Int J Rehabil Res 1986;9(2): 155-165.
- Tyas D, et al. The distribution of the cost of multiple sclerosis in the UK: how do costs by illness severity vary? Value in Health 2007; 10(5): 386-389.
- Thrower B. Clinically isolated syndromes: predicting and delaying multiple sclerosis. Neurology 2007; 68 (24 Suppl 4): S12-15.
- Royal College of Physicians, Multiple Sclerosis Trust. National audit of services for people with multiple sclerosis 2008. London: Royal College of Physicians; 2008.
