Quality statement 1: Information and support at diagnosis

Quality statement

Adults diagnosed with motor neurone disease (MND) are given information about the diagnosis, prognosis and management of MND by a consultant neurologist with expertise in treating people with MND.

Rationale

Receiving a diagnosis of MND is distressing for a person, and they (and their family members or carers) are likely to have a variety of questions and concerns. MND is rare and most healthcare professionals will have little experience and knowledge of it. A consultant neurologist with expertise in treating people with MND can provide accurate and up‑to‑date information on the diagnosis, prognosis and management of MND with compassion and understanding.

Quality measures

Structure

Evidence of local arrangements to ensure that people diagnosed with MND are given information about the diagnosis, prognosis and management of MND by a consultant neurologist with expertise in MND.

Data source: Local data collection.

Process

Of adults with MND, the number who are given information at diagnosis about the diagnosis, prognosis and management of MND by a consultant neurologist with expertise in treating people with MND.

Data source: Local data collection based on extracts from or reviews of individual care records. At provider or clinical commissioning group level, data collection will involve small numbers.

Outcome

a) Adults diagnosed with MND understand how the condition is likely to affect them.

Data source: Local data collection.

b) Adults diagnosed with MND understand the type of care and support they can receive.

Data source: Local data collection.

c) Adults diagnosed with MND, and their families or carers, feel able to cope.

Data source: Local data collection. National data on the proportion of people who felt supported through the consultation when receiving a diagnosis are available from the Improving MND Care survey.

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

Service providers (such as neurology services) ensure that adults who are diagnosed with MND are given information about the diagnosis, prognosis and management by a consultant neurologist with up‑to‑date knowledge and experience of treating people with MND.

Healthcare professionals (such as consultant neurologists with expertise in treating people with MND) ensure that they give adults who are diagnosed with MND information about the diagnosis, prognosis and management, and deliver the information with compassion and understanding. They give information according to the person's needs.

Commissioners (such as clinical commissioning groups and NHS England) ensure that commissioning responsibilities for people with MND are clear, and that they commission services in which adults who are diagnosed with MND are given information about the diagnosis, prognosis and management by a neurologist with up‑to‑date knowledge and experience of treating people with MND.

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

Adults who are diagnosed with MND receive information about the diagnosis, how MND is likely to progress and what will happen next, from a consultant neurologist with expertise in treating people with MND. A neurologist is a hospital doctor who specialises in disorders of the nervous system, including the brain, spinal cord and nerves.

Source guidance

Definitions of terms used in this quality statement

Consultant neurologist with expertise in treating people with MND

A consultant neurologist with up‑to‑date knowledge and experience of treating people with MND. They should have knowledge and expertise in:

  • symptoms

  • types and possible causes

  • treatment options

  • how MND may progress (including cognitive and behavioural changes) and how progression may affect the treatments offered

  • crisis prevention (for example, if there is an acute hospital admission or a breakdown in care arrangements)

  • opportunities for people with MND to be involved in research

  • likely needs and concerns of people with MND and their family members and/or carers (as appropriate)

  • advance care planning.

[Adapted from Motor neurone disease (NICE guideline NG42), recommendation 1.2.1]

Equality and diversity considerations

People with MND can experience cognitive problems. Cognitive change can occur early in the disease progression and may be present at diagnosis. All information should therefore be accessible, as much as possible, to people with cognitive problems. People receiving information about MND should have access to an interpreter or advocate if needed.

In some geographical areas, consultant neurologists without MND expertise may be involved in investigations and testing for suspected MND. Arrangements should be made for information on a diagnosis of MND, prognosis and management to be given by a consultant neurologist with expertise in treating people with MND.