2nd May 2019

New NICE neurological conditions guideline: a missed opportunity

The National Institute for Health and Care Excellence (NICE) has published a new guideline on suspected neurological conditions: recognition and referral. The Neurological Alliance is disappointed with the result.

The guideline is intended to help non-specialist healthcare professionals, such as GPs, working in primary care to identify people who should be referred on for specialist investigation either by a neurologist or elsewhere. Our 2016 patient experience research shows that people with neurological symptoms can often experience lengthy delays before being referred to a specialist: 42% of respondents had to see their GP five or more times before being referred to a neurological specialist, and 19% waited more than 12 months to see a neurological specialist after first seeing a GP. Conversely, we also know that inappropriate referrals to neurologists contribute to long waiting lists in some parts of the country. This is why the Public Accounts Committee recommended that NICE develop a generic quality standard on neurological conditions.

 

So while we strongly support the principles behind the guideline, The Neurological Alliance is disappointed with the final version. As it is published, we believe it is unlikely to provide the support required by primary care professionals to enable better recognition of neurological symptoms as well as more timely and appropriate referrals. We know from our own research that additional support to understand neurological conditions is much-needed by GPs and others working in primary care. An overwhelming majority (84%) of GPs who responded to our 2016 primary care survey felt that they could benefit from further training on identifying and managing people presenting with neurological conditions.

 

Our main concerns with the guideline, which we highlighted in our response to the consultation on the draft guideline as well as in subsequent conversations with NICE, are as follows:

  • The document in its present form is too long and complicated for a primary care audience
  • It goes into much detail about symptoms of some conditions while leaving out others entirely.
  • The guideline is not written in a way that will aid shared decision making, as it fails to make reference to discussion with the patients before referrals are made.
  • It recommends that people with a suspected neurological condition should consider telling their employer, and check the government’s information on driving with medical conditions to find out whether they might have a condition that needs to be notified to the DVLA. This which could have significant and negative consequences for those individuals, yet no reference is made to referring them to additional forms of support.

 

We are particularly disappointed that as it is written, the guideline is unlikely to have the positive impact on people with suspected neurological conditions that we had hoped for. We suspect that, because it is rather long and unwieldy, it is unlikely to be used by GPs and others working in primary care during their consultations with patients. Moreover, we think this is a missed opportunity for GPs to be advised to signpost patients to the information, helplines and support groups available to them.  Many of these provide support before a confirmed diagnosis at a time when a patient is often feeling most isolated and worried. We believe that addressing people’s mental health is an essential part of a holistic, whole-person approach, especially given the complex interactions between neurological conditions and mental, cognitive and emotional health. Yet, this is entirely overlooked in the guideline. Finally, the recommendation relating to telling one’s employer leaves people vulnerable; until diagnosis is confirmed, employees have less legal protection under the Equality Act, and we know that many people with neurological conditions experience discrimination at work.

 

The Alliance is currently considering next steps and how we can better support the original intention of the guideline, to help primary care professionals to better understand neurological conditions.