Completed projects
Second national survey of MS services (2008)
Commissioned by the MS Trust and the Royal College of Physicians
The survey asked people with MS, Hospital Trusts, Primary Care Trusts and the Strategic Health Authorities a number of questions related to the six key recommendations and one quality marker of the NICE (National Institute for Health and Clinical Excellence) guidelines issued in 2003. The results were compared with a similar National Survey conducted in 2006.
Although access to specialist neurological services had improved since 2006, there were still long delays from GP referral to diagnosis, with 50% of all patients waiting more than 20 weeks. The survey showed that access to neurological rehabilitation services remained unacceptable - only 36% of people with MS had access to such services. The survey also reported that 6% of people surveyed had developed a skin pressure ulcer during the previous 12 months. Occurrence of pressure sores had been identified by NICE as a "quality marker" for MS services.
Patient involvement, both in the planning of their own care and in overall service provision and development, was very poor as was the integration of care between health and social services.
For people with MS, delays in diagnosis and inadequate symptom management causes distress, and may worsen disability. There are also costs to the NHS, for example, a grade 4 pressure ulcer costs the NHS an estimated £10,551 [in 2008]. Overall, the survey showed that there was much scope for progress. Specific recommendations for improvements were made particularly regarding responsibilities, commissioning and involving people with MS in all clinical decisions.