NICE Quality Standard on suspected neurological conditions published


Today the National Institute for Health and Care Excellence (NICE) has published its ‘Suspected neurological conditions: recognition and referral‘ Quality Standard. The Standard is intended to support more effective and timely diagnosis of people with possible neurological conditions, and contain six areas for specific improvement and information about how these may be measured.

The Standards represent a vast improvement on the draft document, which was published for consultation last year.

What are the Standards?

The full Quality Standards are as follows:

  • Statement 1 – Children under 12 years with headache and ‘red flag’ symptoms are referred immediately for neurological assessment.
  • Statement 2 – Children under 4 years with suspected abnormal head size or shape have their head circumference assessed using a standardised growth chart.
  • Statement 3 – Adults with suspected dystonia are referred for neurological assessment.
  • Statement 4 – Adults with transient rotational vertigo on head movement are assessed using the Hallpike manoeuvre.
  • Statement 5 – Adults diagnosed with a functional neurological disorder are supported to manage symptoms that are a part of the disorder in non-specialist care.
  • Statement 6 – Adults with suspected neurological conditions using NHS services experience care and treatment that is tailored to their needs and preferences.

Need for tailored support

We particularly welcome the inclusion of Quality Standard 6, “Adults with suspected neurological conditions using NHS services experience care and treatment that is tailored to their needs and preferences”. Our most recent patient experience survey shows that too often the hallmarks of personalised care are lacking. For example, – 28% of respondents disagreed that information about their treatment and condition was effectively passed between the different people who care for them, and 40% of respondents felt their mental wellbeing needs were not being met at all.

NICE recommend that this Standard be monitored through evidence of local arrangements and written protocols to ensure that the physical and psychological needs and preferences of adults with suspected neurological conditions are assessed, addressed and regularly reviewed, including patient surveys. The National Neurological Patient Experience Survey is well placed to support services and commissioners in auditing themselves against this Standard.

A significant improvement

Given that 4 in 10 respondents to the National Neurological Patient Experience Survey saw their GP five or more times before being referred to a neurologist, initiatives to improve timely referral and diagnosis are absolutely critical.

We were therefore significantly disappointed with the first draft of the Quality Standards, which lacked any measures to address these much-needed improvements in care for the vast majority of people with a suspected neurological condition. We felt that both the Standards, and the Guidance from which they were derived was a missed opportunity. Both failed to underline the importance of information and support for people waiting for a diagnosis. The Neurological Alliance has raised strong concerns about this throughout the development of both the Guideline and Quality Standards.

We are therefore pleased that NICE have listened to people with neurological conditions and patient groups ahead of finalising the Standards, and included a statement that addresses the care of the vast majority of people with suspected neurological conditions.

Commenting on the Quality Standards, Georgina Carr, Chief Executive of the Neurological Alliance, said:

“Overall, these Standards provide a helpful baseline to improve the diagnosis and support of people who may have a neurological condition. We commend NICE for listening to patient groups and people with neurological conditions, and adding an additional statement underlying the importance of personalised support.

Today’s Quality Standards provide another helpful tool for commissioners and providers to assess their services for people with neurological conditions. The Alliance and our membership are here to support services to do just that, particularly as we look to collectively rebuild neurological treatment, care and support in the wake of COVID-19.”

What next

While the Standards are not mandatory, they set out the priority areas for quality improvement in health and social care. So they can be used as a tool to support service improvement locally across England and Wales where they apply.

We will be conducting our fourth National Patient Experience Survey this year, which will provide data and evidence to support commissioners and providers to audit their service. If you would like further information about the survey, or the work of the Alliance more broadly, please do contact us.