National Institute for Health and Clinical Excellence (NICE)
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Trusts urged to follow NICE multiple sclerosis guidance

NHS Trusts are being urged to follow NICE recommendations to improve care for patients with multiple sclerosis (MS), following the results of a national audit.

MS is the most common neurological condition in young adults in the UK, affecting around 100,000 people. It is an incurable, unpredictable, life-long, challenging condition that affects every part of a person's life. It can have a huge impact on family and social life, and lead to loss of work and independence.

The audit, conducted by the Royal College of Physicians and the MS Trust, found that there has been little or no improvement in care for MS patients in the last five years, and NICE guidelines for the management of patients with MS are no closer to being met today than when they were first launched in 2003.

None of the six key recommendations made by NICE have been implemented widely or fully, such as ensuring that a rapid diagnosis is offered to all patients once they have experienced symptoms suggestive of MS, and making sure specialist services are in place.

One third of trusts have no plans to improve neurological services in the next year and most are giving insufficient management attention to joining up services across the NHS or with social care.

The audit also revealed that basic symptoms such as pain, fatigue and problems with cognition are not being treated correctly, and that despite people with MS losing on average 18 years of their working lives, most people do not have access to specialist vocational rehabilitation in most areas.

The audit authors concluded that “all organisations in the NHS should be required to initiate a five year project with protected staff with the responsibility to re-organise services to achieve compliance with the standards put forward by the National Service Framework for Long-term Conditions and NICE guideline on the management of people with multiple sclerosis.”

Pam Macfarlane, Chief Executive of the MS Trust said: “Despite a culture of targets and increases in spending in the past ten years there has been little progress in this area.

“With huge changes in commissioning and squeezed budgets there is no evidence that things are going to improve and we are extremely worried about the future for the services that people with MS depend upon.”

Professor Derick Wade, MS audit associate director and professor in neurological rehabilitation, added: “The future changes to the way health services are commissioned give us a unique opportunity to improve the planning, commissioning and provision of services for MS patients, but we must not repeat the mistakes and inertia of the past eight years - we must move forward, identifying where services are deficient and making them better.

“In particular, we believe that there is an opportunity for increased collaboration between different healthcare organisations and between health and social services. MS patients deserve a better future.”

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