'Improving health: ambitions for the South West' - the South West SHA vision
Response from the Multiple Sclerosis Trust
As part of our response to the SHA 'Improving health: ambitions for the South West' 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 West 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 6,520 people with MS in the South West 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 217 new cases per year in the South West 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
In general, the MS Trust is delighted by the South West SHA's Vision for long-term conditions over the next ten years. We are particularly pleased by your resolution to implement the National Service Framework for Long-term Conditions in full. We are also delighted to note the emphasis on developing better informed patients with any condition, and would point out the MS Trust's expertise in providing information and support to people with this condition.
Specific comments:
- We note that the emphasis throughout this Vision is on the delivery of care in community settings but with access to specialist care where necessary. We are concerned about inequalities of access particularly in this SHA region, where Cornwall, for example, is very poorly served for specialist neurology services and for MS specialist nurses, particularly when compared with other parts of the region such as the Bristol area.
- The specialised service that is least accessible to anyone with MS is neurological rehabilitation, as shown in a very recent audit by the Royal College of Physicians in conjunction with the MS Trust.[5] There is some evidence to suggest that provision of neurological rehabilitation is particularly cost-effective if the service looks at a range of neurological conditions including stroke. We would also encourage the SHA to think beyond disease-specific services when looking at specialised services: specialised pain and spasticity services, for example, may need to be commissioned for neurological conditions. We are aware of the specialist pain services available in Bath and would encourage the SHA to develop good commissioning arrangements for this service to ensure its long-term viability.
- In principle, we support the desire to provide the majority of care for people with MS and similar conditions in the community. However, our experience is that specialist health professionals working in community settings can become personally and professionally isolated from their peers. 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.
- We are delighted that the SHA is intending to develop a best practice care pathway for each condition. 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.
- Involving patients in commissioning by 31 March 2009
We will watch this development with interest, since real patient involvement in commissioning is notoriously difficult to achieve. Effective commissioning requires effective data, and currently one of the challenges with MS is achieving a realistic picture of the number of people with the condition. We would particularly encourage PCTs to collate registers of people with a specific condition that are not included in GP's QOF returns.
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.
