NICE clinical guidelines
NICE (the National Institute for Health and Clinical Excellence) published the National Clinical Guidelines for the Management of Multiple Sclerosis in Primary and Secondary Care in the National Health Service in November 2003.
In June 2011, NICE announced that it will be reviewing the Guidelines. A number of areas have been identified where developments mean that the original Guidelines need revisiting. These include revised criteria for diagnosis of MS, exercise and fatigue management programmes, functional electrical stimulation, cognitive training programmes and developments in the way that steroids are used in treating relapses.
The scope of the guideline does not include disease modifying drugs, but several new drugs for symptoms of MS that were not covered by the original guideline will be considered. These include modafinil for fatigue, Sativex for spasticity and Donepezil for improving memory.
The timetable for the review is not yet known.
A separate review of surgery to treat CCSVI is also taking place during the summer of 2011.
What the NICE Clinical Guidelines cover
The guidelines are designed to provide a reasonable level of care for everyone with MS across England.
Key recommendations
The guidelines make six key recommendations for general service improvement. These reflected the stated concerns of many people with MS, whether they were undergoing diagnosis or had had MS for many years.
- Access to specialised services
- Rapid diagnosis
- Seamless services
- A responsive service
- Sensitive but thorough problem assessment
- Self-referral after discharge
Scotland, Wales and Northern Ireland
NICE Clinical Guidelines strictly only apply to England. However, the MS Trust has used the Guidelines as a lever to improve services in Scotland, Wales and Northern Ireland. Our latest audit (see below) has been carried out in Wales as well as England. Scotland's policy of Managed Clinical Networks to provide care for people with MS is beginning to deliver improved services, and we continue to work with health professionals everywhere.
MS Trust / RCP audits of MS services
Whilst publication of the guidelines was a positive step, implementation was always going to be the critical phase. To assess the implementation the MS Trust and the Royal College of Physicians (RCP) conduct an audit of MS services every two years.
The MS Trust continues to actively campaign for implementation of the NICE guidelines. The latest MS Trust/RCP audit took place between January and April 2011. The results are being analysed and will be published later in the year.
2008 audit
The most recent audit was published in July 2008. This audit found that:
- Access to neurological rehabilitation services remains wholly inadequate - only 36% of people with MS had access to such services
- Although access to specialist neurological services has improved, there are still long delays from GP referral to diagnosis, with 50% of all patients waiting over 20 weeks
- 6% of people surveyed had developed a skin pressure ulcer during the previous 12 months despite the occurrence of pressure sores being identified as a 'quality marker' for MS services.
2006 audit
The first audit was published in July 2006. It concluded that: "Current service provision is of low quality and inadequate quantity. Most of the seven recommendations made in the NICE Guidelines are not complied with at present, there are few plans to change this."
Healthcare Commission health check
In October 2008, the Healthcare Commission published a report, known as a health check, on the quality of services provides by health trusts across England.
Whilst the health check shows that on the whole standards are improving, it does illustrate that some areas are providing better services that others. The survey underlines the need for all trusts to achieve a basic standard so that people receive good NHS care regardless of where they live.
Such standards do exist for MS services in the form of NICE's Guidelines for the Management of Multiple Sclerosis in Primary and Secondary Care and the National Service Framework (NSF) for Long-term conditions. However, the audits carried out by the Royal College of Physicians and the MS Trust demonstrate that improvement in this area are happening more slowly.
Since the publication of the 2008 audit, the MS Trust has been in contact with the Healthcare Commission, and with the Care Quality Commission, which took over this area in April 2009. We have been encouraged by their wish to work to use MS data in the future when monitoring services.