'Investing for health' - the West Midlands SHA vision
Response from the Multiple Sclerosis Trust
As part of our response to the SHA 'Investing for health' 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 West Midlands 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 6,460 people with MS in the West Midlands SHA, 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 215 new cases per year in the West Midlands 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 delighted to see the emphasis in this Vision on self-care and self-management for people with long-term conditions, such as multiple sclerosis. However, we are very disappointed that there is no recognition of neurological or progressive conditions in this Vision. While we acknowledge that fewer individuals in the general population are likely to experience neurological or progressive conditions, this sets particular challenges that are not well served by some of the detail in this Vision. We would wish to highlight the following specific points.
Prevention and early detection
Self-care
Single-team approach
Good rehabilitation services
End of life care
Workforce development and training
Commissioning of MS services
Multiple sclerosis and other neurological conditions are not preventable. However, early detection in the form of early and fast referral to specialist neurological services with appropriate diagnostic facilities (eg MRI scanners) is desirable. While much of this is being delivered under the 18 week pathway, we are concerned that the SHA vision does not allow for access to specialised diagnostic and assessment services where required.
We are very pleased to see the emphasis on self-care and self-management for people with long-term conditions. We would point out that the majority of MS specialist nurses and therapists within your SHA are already running courses on self-management for people with MS and this may be an area you wish to explore with them. Greater support for carers is always to be welcomed and we will be very interested to see and potentially be happy to support any new developments in this area.
You say that 'patients will continue to need specialist care, but we need to examine when and how this care should be provided'.
In an ideal world, MS specialist health professionals such as nurses and therapists will work in the community with people with MS. However, this can lead to personal and professional isolation. Our experience has been that clinical networks, such as neuroscience networks, operating across an SHA area, can be of immense benefit. Benefits are 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.
You note that good rehabilitation services are needed to help patients live independently and we would concur with this. However recent research undertaken by the Royal College of Physicians in conjunction with the MS Trust shows that this is the least accessible.[5] Access to rehabilitation is fragmented and not always available across the whole SHA area. Neurological rehabilitation will be vital to allow vocational rehabilitation for people with MS to enable them to return to work and participate fully in society, an aspiration which is implicit in this Vision. There is some evidence to suggest that provision of neurological rehabilitation may be most cost-effective if shared across a number of conditions, notably with stroke and Parkinsons Disease, and we would encourage the SHA to consider how this should best be commissioned across the entire SHA area.
We would also encourage the SHA to consider the importance of other specialised services in improving quality of life for people with MS, such as specialised pain services and specialised equipment services (eg wheelchair services) which are known to be under-provided and under-funded, yet which can improve both quality of life and the ability to participate in life for people experiencing a significant number of long-term conditions.
We are very pleased to see the emphasis on supporting people to die in the place of their choice. However, our experience is that for people with multiple sclerosis, a lack of understanding about the condition and the uncertainty of prognosis has historically made it very difficult for people with MS to access appropriate end of life care. We would welcome any moves to commission such care for people with progressive but unpredictable conditions such as MS.
The MS Trust is the acknowledged leader in providing education and training for specialist health professionals who work with people with MS, notably MS specialist nurses and therapists. We also run an annual multi-disciplinary conference and study days for general community nurses and therapists who have people with MS on their caseload. Our experience is that access to appropriate therapy, notably speech and language therapy, is particularly difficult for people with MS.
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.
