'Towards the best together' - the East of England SHA vision
Response from the Multiple Sclerosis Trust
As part of our response to the SHA 'Towards the best together' 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 East of England 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 6,740 people with MS in the East of England 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 225 new cases per year in the East of England 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 at the East of England SHA's commitment to the concept of disease registers in place for each long-term condition. We know that multiple sclerosis, while an uncommon condition, is frequently under-recognised in terms of planning because there is no accurate data on people with the condition. We are also very concerned that without accurate data, efficient commissioning of health service provision is not possible.
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.
We welcome the increased emphasis on self-management and expert patient programmes, and would point out that most of the MS specialist nurses in your region are already running self-management courses for newly diagnosed people with MS. The MS Trust is currently working towards a new publication on Self-Management with Multiple Sclerosis which may be useful for distribution for individuals with the condition who are reluctant to join a formal education programme.
We are also very pleased to see the emphasis on personal health plans and the idea of a central point of contact for the person with a long-term condition, such as MS, to get in touch with in any emergency. These are basic changes that can make a world of difference to individuals with this condition.
However, we have some concerns about the Vision for service provision. The main thrust of the Vision is to move specialist support and advice into the community. While we agree that this is a laudable aim, it is difficult to see how specialised neurological conditions such as multiple sclerosis, MND and Parkinsons Disease will be well served by this, given that most neurology departments are provided in only a few specialist hospitals. 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.
Despite this, we would welcome any moves to provide MS specialist nurses and therapists in the community, where they can be of direct benefit to individuals, but are concerned that this can lead to significant personal and professional isolation. To avert this, 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.
On a related topic, you state that diagnostic services will be available in primary care. It is difficult to see how this model will relate to the differential diagnoses that are needed for unusual neurological conditions such as MS or MND, where the diagnostic process involves a series of tests such as MRI scans and lumbar punctures, but where the results need to be interpreted by a specialist neurologist.
Our other major concern centres around super specialised services which it are not cost effective to provide in primary care. 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 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 rehabilitations: 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.
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.
