NHS services for people with multiple sclerosis: 2006 national survey
Audit results
People with multiple sclerosis expressed a general satisfaction with NHS services when asked to quantify their satisfaction globally. In stark contrast, more detailed quantitative data and the qualitative comments made by people with MS revealed both a significant extent of poor quality services and dissatisfaction with services received.
Strategic health authorities reported very little monitoring of the commissioning of services by primary care trusts. Some noted that this was not their responsibility, others accepted responsibility even if not undertaking any performance management.
Primary care trusts did commission using the recommendations, but few monitored the delivery of services against any of the NICE recommendations. The low response rate (18/57) (32%) strongly suggests that services for people with multiple sclerosis were given low priority.
Some hospital trusts did provide services according to some of the recommendations, but few monitored their performance against the recommendations.
The lack of monitoring uncovered by the audit reinforces that neither the NICE Guidelines nor National Service Framework (NSF) on Long-Term Conditions contained any targets or financial incentives to ensure compliance.
The report notes that: "Almost all the targets imposed centrally by the Government through the Department of Health relate to acute medical, and specifically acute surgical conditions. Even if not stated explicitly, the complete absence of any targets concerning rehabilitation, disability or long-term conditions will naturally imply that services for people with long-term disability are less important and hence this group of patients is in some way less deserving."
The impact of this low priority is starkly illustrated by the views of people with MS, who were asked to contribute to the audit.
One patient wrote: "I was assessed, agreement reached [that] I needed a shower facility. I was told I was on a 3-4 year waiting list. I have fallen several times climbing into the bath. When I questioned this lengthy wait I was told there were people more needy than me. I asked how and who. I was told 'cancer patients'."
Another said: "I have been made to feel that because my MS is incurable then I am not worth taking the time with."
Just a third of Primary Care Trusts (PCTs) and a third of Strategic Health Authorities (SHAs) who were contacted completed the survey, and many NHS organisations were unable to answer the questions posed within the audit.
In the report the authors comment: "The low response rates and low quality of the data obtained from individual organisations are additional strong evidence of the low priority given to services for people with multiple sclerosis. If the organisations could not collate the data needed to provide answers to the simple basic questions posed, they are certainly not in a position to monitor and improve service quality."
The current financial and managerial upheavals within the NHS are accepted within the report as an influence on the results, though the authors do not believe that this can be used to dismiss the findings.
One of the lead authors of the report, Professor Derick Wade, professor of Neurological Rehabilitation at Oxford University, said: "Continuing NHS change is now the normal state of affairs. It cannot be used to excuse the results of our audit. We hope all NHS organisations accept our findings and make greater effort to implement the NICE guidelines. It can not be left to individual clinicians to make piecemeal progress. Without strong support from commissioning organisations and hospital Trusts significant progress will not occur."
The NICE Guidelines consisted of seven key recommendations. The first six relate to:
- The availability of specialised services
- Rapid diagnosis of suspected MS
- Seamless delivery of services to people with MS
- Services being responsive to the needs of people with MS
- Sensitive but thorough needs-assessment
- Self-referral after discharge
The appropriate management of pressure ulcers formed the final NICE recommendation, the primary requirement being for every pressure ulcer to be reported. Despite this just one in five hospital trusts reported to PCTs on the rate of ulcers. One in ten patients (9%) in the study reported a skin pressure ulcer over the preceding twelve months.
