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'From Evidence to Excellence' - the East Midlands SHA vision

Response from the Multiple Sclerosis Trust


As part of our response to the SHA 'From Evidence to Excellence' 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 Midlands 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 5,460 people with MS in the East Midlands 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 182 new cases per year in the East Midlands 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 with its emphasis on patient-centred care and self-management of long-term conditions such as multiple sclerosis. We are encouraged that the SHA has produced a thorough set of principles that apply to a number of conditions, and that have the potential to offer significant benefits to people with MS and other neurological conditions. We are also delighted by the emphasis on the National Service Framework for Long-term Conditions.

Specific points

  1. More access to specialised care

    2. The MS Trust is particularly encouraged by the Vision's emphasis on the need for more specialised care for specialised conditions. For MS, the East Midlands is well served by specialist neurology centres in Nottingham and Leicester and a specialist rehabilitation unit in Derby. We are concerned about the comparative lack of specialised provision for neurology in Lincolnshire, a difficult area to serve because of its rural nature. We would welcome any moves by the SHA to address this issue.

    Lack of specialised services also applies to the south of the SHA area eg Northamptonshire, where it is important that individuals are able to access specialised care as close to home as possible - so we would encourage cross-boundary commissioning to allow the continuation of access to services in Milton Keynes and Oxford.

    The specialised service that is least accessible to anyone with MS is neurological rehabilitation, as shown in a very recent review by the RCP/MS Trust.[5] Within your SHA, Derby City Hospital runs a world-class rehabilitation service which is renowned for its services to people with neurological conditions, but we also know that access to this is fragmented and not always available across the whole SHA area.

    We would 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.

  2. Priorities for change

    3. As a general overview, we endorse your priorities for change. The following comments are only where we are able to add some pertinent thoughts:

    • Develop with patients their own personalised care plan by 2009 - we are delighted by this approach although would emphasise that for a fluctuating condition such as MS, care plans may need to be carefully devised and regularly reviewed.
    • Commission generic and disease specific self care programmes - we would point out that MS specialist nurses based in Nottingham, Leicester, Derby and Lincoln are already running MS-specific programmes for newly diagnosed people with MS, which are often under-recognised.
    • Increase capacity within the community to provide support to people with long term conditions to remain at home for as long as their condition allows - you rightly note that this will require health and social care services to work in partnership. We would flag up some areas of significant difficulty for people with MS and other disabling conditions, namely, timely and appropriate access to equipment services, particularly wheelchair services, and relevant telecare within the domiciliary setting. We would suggest that a review of how these services are commissioned and provided might be beneficial.
    • Ensure the care planning process supports patients expressing their preferences - we are delighted that this has been recognised and hope it will be well supported.
    • Use patient held records to share with patients their personal information - we would be very interested to see how this model develops and would welcome any thoughts you may have on sharing the vision for its implementation. People with MS have long requested such a system. Ideally such a system will be compatible with all relevant IT systems and recognised in all care settings eg primary, secondary and tertiary care, to enable faster access to care in emergency situations.
    • Develop clinical leadership capacity and put in place sufficient leaders to implement the plans. Whilst clinical leadership is vital to developing new services and improvements, 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.
    • Support the establishment of integrated models of provision by the elimination of fragmentation in the system. We wholeheartedly agree with this statement, which is particularly relevant to rehabilitation services for neurological conditions.
    • Support PCTs to use population stratification tools to identify patients at risk of increased care needs and support PCTs to develop the competencies for World Class Commissioning which particularly relate to long term conditions - we agree with these statements. 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

  1. Compston A, et al.McAlpine's Multiple Sclerosis. Fourth edition. London: Churchill Livingstone; 2005.
  2. Kornblith AB, et al. Employment in individuals with multiple sclerosis. Int J Rehabil Res 1986;9(2): 155-165.
  3. 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.
  4. Thrower B. Clinically isolated syndromes: predicting and delaying multiple sclerosis. Neurology 2007; 68 (24 Suppl 4): S12-15.
  5. Royal College of Physicians, Multiple Sclerosis Trust. National audit of services for people with multiple sclerosis 2008. London: Royal College of Physicians; 2008.