Quality statement 1: Support at diagnosis | Multiple sclerosis | Quality standards

Quality statement

Adults with multiple sclerosis (MS) are given support at the time of diagnosis to understand the condition, its progression and the ways it can be managed, by the consultant neurologist making the diagnosis.

Rationale

Receiving a diagnosis of a long‑term condition like MS is life changing and stressful. It is important that consultant neurologists offer information, advice and support at the time of diagnosis so that the person with MS has a sense of control over their own life, is more able to make decisions about how their condition is managed, and is less anxious.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.

Structure

Evidence of local arrangements to ensure that adults with MS are supported at the time of diagnosis to understand the condition, its progression and the ways it can be managed, by the consultant neurologist making the diagnosis.

Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from service specifications or service protocols.

Process

Proportion of adults with MS who are given information about MS, its progression and the ways it can be managed by the consultant neurologist at the time of diagnosis.

Numerator – the number in the denominator who are given information about the condition by the consultant neurologist at the time of diagnosis.

Denominator – the number of adults receiving a new diagnosis of MS from a consultant neurologist.

Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient records.

Outcome

Patient satisfaction with the support provided at diagnosis.

Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from patient surveys.

What the quality statement means for different audiences

Service providers (neurology services) ensure that systems are in place for adults with MS to be supported at the time of diagnosis to understand the condition, its progression and the ways it can be managed, by the consultant neurologist making the diagnosis.

Healthcare professionals (consultant neurologists) ensure that at the time of making the diagnosis, they support adults with MS to understand the condition, its progression and the ways it can be managed.

Commissioners (NHS England, integrated care systems and clinical commissioning groups) ensure that they commission services that support adults with MS at the time of diagnosis to understand the condition, its progression and the ways it can be managed.

Adults with MS are given support by the consultant when first told that they have MS. This early support helps people with MS (and their families and carers) to begin to understand what MS is, what treatments are available and how the symptoms can be managed.

Source guidance

Multiple sclerosis in adults: management. NICE guideline NG220 (2022), recommendation 1.2.1

Definitions of terms used in this quality statement

Support

This should include oral and written information about:

what MS is
treatments, including disease‑modifying therapies
symptom management
how support groups, local services, social services and national charities are organised and how to get in touch with them
online resources
legal requirements such as notifying the Driver and Vehicle Licensing Agency (DVLA; see the DVLA webpage on multiple sclerosis and driving), and legal rights including social care, employment rights and benefits.

[NICE's guideline on multiple sclerosis in adults, recommendation 1.2.1]

Equality and diversity considerations

Cognitive problems are a common symptom of MS. People can experience a wide range of difficulties, including problems with attention, memory and decision‑making, and planning. All information should be accessible to people with cognitive problems. People receiving information about MS should have access to an interpreter or advocate if needed.