Quality statement 1: Support at diagnosis

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

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: Local data collection.

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: Local data collection.

Outcome

Patient satisfaction with the support provided at diagnosis.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

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 local area teams 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.

What the quality statement means for patients, service users and carers

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

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

  • legal requirements such as notifying the Driver and Vehicle Licensing Agency (DVLA), and legal rights including social care, employment rights and benefits.

[Multiple sclerosis in adults: management (NICE guideline CG186) recommendation 1.2.2]

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.