Evaluating service delivery may be considered the most important and relevant issue in the management of MS because it incorporates acute hospital and neurorehabilitation services together with community-based activities and, in essence, has to bring together medical and social services in a way that meets the complex and ever-changing needs of the person with MS. Ideally, most services should be community-based with supporting expertise from the acute hospital or rehabilitation centre at times of particular need (e.g., at diagnosis or at the time of a severe relapse) or complexity (when multiple symptoms interact and intensive inpatient rehabilitation is required). The optimum method of service delivery has not yet been defined, and little work has been done comparing existing services.

A recently published study carried out in Rome compared two forms of service delivery in a randomized controlled trial of 201 patients with MS. One group (133 patients) received what was described as “hospital” home care, in which patients remained in the community but had immediate access to the hospital-based, multidisciplinary team as and when required, while the other group (68 patients) received routine care. The range of outcomes, which included EDSS, FIM, SF-36, and measures of anxiety and mood, were carried out at baseline and at 12 months. No difference was seen in the level of disability between the two groups, but the more intensively treated patients had significantly less depression and improved quality of life.

There continue to be major problems worldwide in delivering a model of care that provides truly coordinated services. There is serious inequity of service provision both within and across countries, and an inordinate and unacceptable reliance on family and friends to provide essential care. Establishing guidance such as has been done by NICE is a step forward but a global initiative such as the MSIF Quality of Life Principles may be more effective. This document espouses many of the key elements, essential to maintaining quality of life, including such fundamental issues as employment, transport and insurance (Fig 4.4). The key and as yet unrealised challenge will be ensuring the translation of these documents into practice.



Fig. 4.4. The Quality of Life Principles, published by the Multiple Sclerosis International Federation (MSIF).

Conclusion: Although there is good empirical evidence to support coordinated expert service delivery, there is little evidence currently available to support this concept in the management of MS and further studies are required.