For the Management of Multiple Sclerosis in Primary and Secondary Care in the National Health Service
February 1, 2004
Multiple Sclerosis Trust
On 26 November, NICE published its guidelines for the management of MS by the NHS in England and Wales.
These clinical guidelines make key recommendations for service improvement for the management of MS in England and Wales. They embody the best of current best practice, backed up with evidence where the evidence is strong. Where there is no evidence, a panel of experts have made recommendations on the basis of consensus. The panel was drawn from health professionals specialising in MS, and a representative each from the MS Trust and the MS Society.
There are two versions of the guidelines available, one aimed at health professionals and the other at the general public. To download a copy of either version, click these links:
The “full” version of the guidelines was published in February 2004. This includes information on how the evidence was collected, reviewed and assessed, a description of how the recommendations were formulated and graded, and full reference details of the literature in the evidence base. This document will be a valuable resource to clinicians and researchers in its own right. The full guideline was produced by the National Chronic Conditions Collaborating Centre at the Royal College of Physicians and is available from their website.
What the guidelines say
The guidelines are aspirational but achievable, and they will make a real difference by acting as a benchmark for best practice by which all who are involved in MS - whether personally or professionally – will, we hope, be able to work together for better services.
The guideline developers have identified six key recommendations. These were chosen because they reflect the stated concerns of many people with MS and should benefit almost everyone who has MS, whether they are undergoing diagnosis or have had MS for many years.
1. Specialised services
Specialist neurological and neurological rehabilitation services should be available to every person with MS when they need them, usually when they develop any new symptom, sign, limitation on activities or other problem, or when their personal, family or social circumstances change.
2. Rapid diagnosis
Every person who is suspected of having MS should be referred to a specialist neurology service. Every person should be seen again after all investigations needed to make a diagnosis have been completed. People should be told how long they have to wait for the first referral and for the follow-up appointment. The extent to which these dates are kept to should be monitored.
3. Seamless service
Local organisations that pay for local services (e.g. primary care trusts in England and local health boards in Wales) should ensure that all organisations in a local health area agree and publish information about how they will provide services and share information so that services work smoothly for people with MS. This information should include agreement on how different organisations will share responsibility for the care of people with MS and how transfer of care between organisations will work.
4. A responsive service
All services and people employed within the health sector should recognise and respond to the varying and unique needs and expectations of each person with MS and should involve them actively, if they wish, in all decisions and actions.
5. Sensitive but thorough problem assessment
Health service workers in regular contact with people with MS should consider in a systematic way whether the person with MS has a ‘hidden‘ problem contributing to their clinical situation, such as fatigue, depression, cognitive impairment, impaired sexual function and reduced bladder control.
6. Self referral after discharge
Every person with MS who has been seen by a specialist neurological or neurological rehabilitation service should be informed how to make contact with these services when they are no longer under regular treatment or review. They should also be given guidance on when such contact is appropriate.
Bernadette Porter, Chair of the UK MS Specialist Nurse Association, welcomed the guidelines:
"The UK MS Specialist Nurses Association welcome these guidelines as they provide a framework for health professionals to shape and design true patient focused services.
"If we are to deliver the care detailed in these guidelines we will need to increase the number of MS Nurses, Consultant Neurologists and other Multidisciplinary Specialists. In addition to extra personnel there needs to be an increase in resources made available such as MRI scanners and rehabilitation units. However, some of the guidelines can be implemented with minimal resource implications if we use new ways of working.
"There are already many excellent examples of this in place in the MS arena in Diagnostic Clinics, Rehabilitation Teams and Nurse Led Clinics. These guidelines will help us build on good practice encouraging primary and secondary teams to get together with people with MS to establish local priorities in service delivery. The changes can not all occur overnight however, many can be implemented in a short time frame whilst the others can be implemented to reflect local need as intermediate and long term goals. Overall, these guidelines and the anticipated NSF on long term conditions will really shape care delivery in the next five years making it very exciting time in the MS world and one that UK MS Nurses embrace."
Scotland and Northern Ireland
In Scotland there is currently no plan to adopt the NICE guidelines. The Scottish parliament is setting up a programme of managed clinical networks as a way of linking services and sharing good practice. At present, no Managed Clinical Networks have been set up, although three health boards are working on pilot projects.
It is not yet clear how the NICE guidelines will impact on services
for people with MS in Northern Ireland.
Copyright © 2004, Multiple Sclerosis Trust