'Healthier people, excellent care' - the South East Coast SHA vision
Response from the Multiple Sclerosis Trust
As part of our response to the SHA 'Healthier people, excellent care' 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 East Coast 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 5,565 people with MS in the South East Coast 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 185 new cases per year in the South East Coast 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
Overall, the MS Trust welcomes this Vision for people with multiple sclerosis. We are delighted to note the key recommendations of joint commissioning of services for people with long-term conditions, of clinical care networks and the emphasis on vocational rehabilitation which has long been neglected for individuals with multiple sclerosis.
As an MS charity we were particularly pleased to see multiple sclerosis identified as a specific long-term condition.
There follows our response to some specific points:
Clinical care networks
Access to specialist care
Appropriate ongoing and specific education and training of professionals… and a lack of situation specific education for patients
Rehabilitation
Epidemiology
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. We are particularly encouraged by the vision for putting proper managerial and administrative support staff in place for such a network, a vital part of the service which is often overlooked.
the MS Trust is concerned that people with MS should have access to specialised care where appropriate, including referrals to secondary and even tertiary care. This is not made explicit in the SHA vision and we would welcome some clarity on this point.
the MS Trust is an acknowledged leader in providing high quality education for MS specialist nurses and therapists. In addition we run he only annual multi-disciplinary conference on MS and one-off study days for generalist community therapists and nurses who work with people with MS. Situation specific education for people with MS is very often being provided by MS specialist nurses and therapists, but management may not be aware of this. We would encourage the SHA to identify areas of best practice within your locality.
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] Access to this is fragmented and not always available across the whole SHA area. Neurological rehabilitation will be vital to allow vocational rehabilitation for people with MS, 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 vital importance of other specialised services in improving vocational rehabilitation: specialised pain services are known to be under-provided and under-funded, yet effective pain management can improve both quality of life and ability to participate in life for people experiencing a significant number of long-term conditions.
we welcome the SHA's recognition of possible opportunities for joint budgeting. However, we note that service commissioning is currently exceptionally difficult, partly because of the plethora of non-connected IT systems, but also because of the lack of incentives to collate data on a number of conditions, of which MS is one. We would particularly encourage PCTs to collate registers of people with a specific condition that are not included in GP's QOF returns. Adequate commissioning for uncommon conditions such as MS is not possible without adequate data, and at the moment accurate assessments of the MS patient population are impossible as the data is only held at GP level.
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.
