'Healthy Ambitions' - the Yorkshire and Humberside SHA vision
Response from the Multiple Sclerosis Trust
As part of our response to the SHA 'Healthy Ambitions' 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 Yorkshire and Humberside 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 6,700 people with MS in the Yorkshire and Humberside 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 220 new cases per year in the Yorkshire and Humberside 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
There is much to commend in this Vision for services for people with multiple sclerosis. However, we are concerned that the Vision fails to mention any neurological condition whatever, including stroke or dementia, as well as less common neurological conditions such as multiple sclerosis. This is a concern because these conditions are frequently progressive and individuals will worsen, despite the best efforts of their healthcare professionals.
We wish to make specific comments on the following elements of the Vision:
Positive emphasis on patient information and education
Positive emphasis on health promotion
Year of care approach and care plans from the point of diagnosis
Specialist clinical services and core standards common to all settings
- MS diagnostic services: multiple sclerosis is a differential diagnosis that requires access to a number of tests such as MRI scans of brain and spinal cord, and on occasion lumbar punctures and even evoked potential tests. It is difficult to see how all these tests could be offered in community settings in any cost-effective manner, particularly given that the results then need to be interpreted by a consultant neurologist.
- some drug therapies, such as disease modifying drug treatments
- neurological rehabilitation. Recent research undertaken by the Royal College of Physicians in conjunction with the MS Trust has demonstrated that this is the service least accessible to anyone with MS[5], and yet can be most significant in facilitating return to work, optimising function and decreasing reliance on NHS services, notably continuing care and equipment services.
- 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.
Commissioning of MS services
Core competencies for all staff
Independence of choice in contact with services
We are particularly pleased to see such a positive emphasis on patient information and education including generic and condition specific education programmes. We would point out that the majority of MS specialist nurses within Yorkshire & Humberside SHA will already be running condition-specific education courses both for people newly diagnosed with MS and for those whose condition is of longer standing.
We are delighted to note the positive emphasis on health promotion for individuals with long-term conditions. For a condition such as MS that is not preventable, we are concerned that access to health promoting behaviours, such as healthy eating, exercise, full screening for all concomitant conditions, and other services such as dentistry should remain available despite complex disability and the consequent access issues of a proportion of this population.
We are interested to note the emphasis on managing people with MS in the primary care setting with a raft of care proposals to ensure that they are well managed. We are, however, slightly concerned that this generic approach does not allow for the challenges that can come with a fluctuating and frequently progressive condition, which is not stable, and which may require significant adjustments in care provision from the NHS and from social care, over the coming year. We would welcome any detail you are able to provide about how this model will apply to neurological conditions.
We are very interested to see the emphasis on moving care for specialised conditions into the community, and providing specialist clinical services and core standards common to all settings. However, our experience is that specialist health professionals working with a condition such as MS within the community can often feel isolated. 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.
However, it is important to recognise that some specialist services are difficult to provide in all settings. This is particularly true of:
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.
While we welcome core competences for all staff working with people with long-term conditions, including multiple sclerosis, we would point out the plethora of existing competences provided in arenas such as Skills for Health and the Knowledge and Skills Framework. The MS Trust in conjunction with the other relevant parties has developed a set of key competences for MS specialist nurses that should be available shortly.
This is a commendable aim and we will be very interested to see how it develops in practical terms across the SHA area, particularly given the implications for effective commissioning of services.
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.
