'Healthier horizons for the North West' - the North West SHA vision
Response from the Multiple Sclerosis Trust
As part of our response to the SHA 'From Healthier horizons for the North 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 North 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 9,290 people with MS in the North 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 309 new cases per year in the North 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
The MS Trust broadly welcomes this vision for the future of services for long-term conditions in the north-west but trust that the following comments will be given due consideration.
Your vision is of:
- Prevention - not possible for MS where the cause is unknown.
- Early identification / intervention of exacerbations using a multidisciplinary team - we are delighted to see this model of care being proposed as evidence from the NICE Guideline and other recommendations for relapse management in MS suggest this is the most effective means of minimising the risk of long-standing disability resulting from an exacerbation.
- Reliable, evidence based delivery of primary and acute care services under an umbrella of personalised patient choice and self care. We are delighted to see this emphasis on the integration of primary and acute care with the needs of the individual.
As a general observation, the main thrust of this vision is to develop care for people with MS within the community. Our experience is that health professionals working with a condition such as MS within the community can often feel isolated. Clinical networks, such as neuroscience networks, operating across an SHA area, can be of immense benefit, 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
Your recommendations - our comments:
Recommendation 1 - the focus is on personalising care
Recommendation 2 - the role of the advocate and care co-ordinator in the care team is key
Recommendation 3 - patient pathways should reflect a greater focus on self care
Recommendation 4 - a collaborative care plan as the central component to all care
Recommendation 5 - the care campus would be focused around general practice/primary care
Recommendation 6 - NHS organisations need to have mechanisms to invest in long term and broader outcomes of care
The MS Trust is generally very positive about the individual points made in this recommendation. We were interested in your proposed outcome that personalised budgets and direct payments should become the 'norm' for individuals with long-term conditions. Our experience of these is that they can work very well but some individuals with MS and other long-term conditions require significant levels of support to manage the financial and employment implications of these projects, which in turn requires significant levels of support from either social care or the Third Sector. This may need to be considered by the SHA in implementing this vision.
We are delighted that each individual with MS will have a named patient advocate and care co-ordinator in the community. Given that MS is a comparatively unusual condition, we would be interested to know how these care co-ordinators will be in touch with MS specialist services, such as MS specialist neurologists and specialist nurses, to ensure that they as well as the individual has access to the right support and help.
We welcome the initiative to further develop practice based registers, not just to target screening but also to identify a full patient population. Adequate commissioning for uncommon conditions is not possible without adequate data, and at the moment accurate assessments of the MS patient population are impossible as the data is only available at GP level. This fact is also true for more prevalent conditions such as dementia and Parkinson's Disease, which also have significant resource implications.
Delighted to see this. We will be interested to see how you plan to integrate social care, community care and specialists, who are under very different financial pressures.
This plan to develop a virtual care campus to deliver health and social care provision within primary care on specialised problems is to be welcomed, particularly as people need care close to home as they become more disabled with a condition such as MS. However, we are concerned about how you will ensure that Payment by Results will not be a barrier to these new models of care. Our experience - in other SHAs - has been that, for example, MS specialist nurses employed by acute Trusts who had been working in clinic and in the community, were discouraged and/or prevented from providing this model of care because of financial pressures imposed by PbR. MS specialist therapists working at PCT level report similar difficulties for delivering any cross-boundary care beyond a certain PCT. This is a particular concern where specialist services are provided by a Foundation Trust with its own financial agenda.
The MS Trust is generally very pleased with the points outlined in this recommendation. We are concerned about the point that care will be delivered in local communities where possible with access to specialist (traditionally some secondary care) services where convenient and accessible to them. It is important for some people with MS to continue to be able to access tertiary care for some very specific symptoms and problems, and we are concerned that any model of care needs to reflect this. 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.
Finally it may be of value for the SHA to know that 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.
