'Our vision, our future' - the North East SHA vision
Response from the Multiple Sclerosis Trust
As part of our response to the SHA 'Our Vision, our 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 North East 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 3,370 people with MS in the North East 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 112 new cases per year in the North East 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
Generally the MS Trust welcomes the North East SHA's vision for service development for long-term conditions over the next ten years. We are particularly pleased by the idea of an individual care plan that follows a condition-specific protocol which offers the opportunity for people with MS to access care as and when they need it.
Specific points:
'There will be a single underlying pathway for long-term conditions across health and social care. Specialist interventions for specific long-term conditions will be built around this pathway'.
Within 'Our vision our future' there is a proposed pathway for long-term conditions with a model of middle stage treatment that includes nurse specialists in the community.
'We will establish a regional long-term conditions network to ensure that best practice is being implemented in local areas and will also develop effective metrics'.
Good rehabilitation services.
A competency-based approach to training in long-term conditions issues will be developed.
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. Lynne Barr from the North East has been involved in the development of this pathway.
We have some concerns about this plan for service provision. 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. This is particularly true where detailed assessment is required and also at the point of diagnosis: MS and other neurological conditions may require a differential diagnosis involving extensive tests which are hard to provide in primary care. 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 moves to provide MS specialist nurses and therapists in the community, where they can be of benefit to individuals,
Our experience has been that clinical networks, such as neuroscience networks, operating across an SHA area, can be of immense benefit in up skilling health professionals, and also in reducing the personal and professional isolation that can develop in specialist health professionals who work in the community. 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.
There is no mention in this Vision of rehabilitation although there is some considerable emphasis that 'all services will maximise the ability of individuals to care for themselves in their preferred environment and achieve their desired outcomes. A wide range of support models, including assistive technology and remote monitoring, will be utilised to achieve this.' In practice, many people with MS and similar neurological conditions require rehabilitation services to make best use of assistive technology and we would encourage the SHA to consider this point when reviewing specialised services. Research that we have conducted in association with the Royal College of Physicians indicates that the specialised service that is least accessible to anyone with MS is neurological rehabilitation.[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 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 would urge the SHA to use existing competency based tools for developing the long-term conditions workforce, including the Skills for Health competences and those being developed under the leadership of the MS Trust which are aligned with the Knowledge and Skills Framework.
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.
