Impact case study database

In 2015, the President of the Royal College of Psychiatrists summarised the overall impact of Edinburgh Neuroscience research in this area as follows: “ Over the last 15 years, [it] has made a unique contribution to functional disorders at the interface between neurology and psychiatry. […] If we wind back to 2000, these disorders were invisible in training curricula, there was very little research and there was no information for patients. None of that is true now.” [5.1].

Impact on practitioners

Diagnostic manuals

Edinburgh Neuroscience research has driven changes in the diagnostic criteria for FND in the 2 main diagnostic manuals used by healthcare professionals worldwide: the DSM-5 (May 2013) [5.2a], and the ICD-11 (2018) [5.2b].

In the DSM-IV, a diagnosis of FND required a psychological stressor and exclusion of other possible diagnoses. By contrast, the DSM-5 dropped the need for a psychological stressor and required the presence of positive clinical signs [5.2a]. The text editor of the DSM-5 Somatic Symptoms Disorder chapter confirmed that the DSM-5 work group: “ asked Professor Jon Stone (University of Edinburgh) to write the first draft of the section on Conversion (Functional Neurological Symptom) Disorder for the 2013 manual. His seminal studies, and that of his group, provided the evidence on which transformative changes to the diagnostic criteria were based. […] He had articulated these in an earlier joint position paper [3.5] which was adopted by DSM-5.” [5.2c].

While the first publication of the DSM-5 occurred before the REF2021 census period, the transformed criteria have been in place, guiding the decision-making of healthcare professionals, ever since. Furthermore, the new criteria were retained and strengthened in the DSM-5-Text Revision (initiated in 2019). The text editor confirmed he invited Stone to carry out this revision, “ on the basis of his status as the leading researcher in the field. Of particular note, his group's paper in Lancet Psychiatry in 2018 is now the key work that strengthens the earlier decision to drop stressful events as an essential diagnostic criterion.” [5.2c]

In the ICD-11, for the first time, a description of “dissociative neurological symptom disorder”, appears under the menu for both “diseases of the nervous system” and “mental and behavioural disorders” [5.2b]. Stone was an advisor to the World Health Organization Topic Advisory Group for Neurology and authored an article in Neurology in 2014, which strongly recommended this joint ownership [5.2d].

UK clinical curricula in Internal Medicine and Neurology

As a direct result of Edinburgh Neuroscience research, FND has been incorporated into standard training for specialising clinicians in the UK [5.3a]; the Internal Medicine curriculum (from August 19), includes Functional Disorder in the main table of conditions [5.3b] and the UK Neurology specialist training curriculum (from August 22) will include it as 1 of 10 core capabilities [5.3c]. The Chair of Neurology of the Joint Royal College of Physicians Training Board attested to the influence of Edinburgh research in these inclusions: “ Although there are other professionals involved in Functional Neurological Disorders in the UK, […] it has been Professor Stone and Professor Carson who have articulated most clearly, and with the most credibility, the need to embed an appreciation of FND in the curricula of trainees in Internal Medicine and in Neurology” [5.3a]

Professional structures and training

Edinburgh Neuroscience research findings have led to 3 UK and 1 international professional networks, which foster research collaborations and enable practitioners to learn and share best practice:

• UK Functional Neurological Society has since 2011 led to a range of collaborative research projects culminating in the first international consensus statements on 1) physiotherapy for FND ([5.4a]; downloaded 40,000 times since publication in 2014) and 2) occupational therapy for FND [5.4b]. The Society’s collaborations also underpinned the CODES and Physio4FMD trials.

• The Association of British Neurologists special interest group in FND (2016; [5.4c])

• UK Functional Neurological Forum (2015 [5.4d])

• FND Society, an international multidisciplinary society dedicated to advancing research and improving the diagnosis and treatment of patients with FND. This was formed by Stone and Carson together with Mark Hallett (USA) in 2017, following the first-ever FND conference attended by over 550 experts from neurology, psychiatry, psychology and allied health. By October 2020, FND Society had 488 members from 19 countries [5.4e].

• Carson has led a training course at the annual international congress of the Royal College of Psychiatrists every year for 23 years, using Edinburgh Neuroscience research to train psychiatrists to recognise and manage patients with FND [5.4f].

Impact on clinical practice

New dedicated FND services

Edinburgh Neuroscience research is also impacting clinical practice in the UK through the emergence of new neurology services, established with the explicit purpose of receiving patients with FND. Examples include new services in Cambridge (established in 2013 [5.5a]) and Bristol (2017 [5.5b]). Both founders credit their exposure to Edinburgh Neuroscience research as transformative to their attitude and practice, with the founder of the Bristol service stating: “ Being able to quote the scientifically rigorous work of Profs Stone and Carson helped me defend my interest and successfully make the case for a better service in Bristol” [5.5a]. Together, these services have received over 1,000 patients since their launch. Notably, these dedicated FND services can lead to NHS resource savings: the founder of the Cambridge service notes: “ In association with the finance department, it was estimated that attendance at the FND clinic, thereby receiving a clear diagnosis and management plan, could save over GBP2,000 per patient, by reducing future hospital ‘encounters’. From data collected in 2014-2016, two thirds of patients improved (over a variable follow up period).” [5.5b]

Patient experience

Previously, patients typically attended multiple primary and secondary care visits without gaining any diagnosis or appropriate treatment [5.6a]. With healthcare professionals now better aware of FND through updated diagnostic manuals, inclusion of FND in the medical curriculum and professional structures, patients are more likely to receive an earlier and definitive diagnosis of FND. This has been shown to significantly reduce patient distress [5.6b]. Importantly, there is evidence from randomised clinical trials that targeted interventions for FND can improve symptoms. For example, a randomised feasibility trial, based on treatments first co-authored by Edinburgh Neuroscience, demonstrated symptom improvement (72% good outcome in intervention vs 18% in controls) in 60 patients with FMD following targeted physiotherapy [5.7]. The CODES trial serves as further evidence that interventions specifically targeted for FND can significantly improve patient experience and wellbeing. Thus, the fundamental impact of Edinburgh’s body of research on FND has been to transform FND from a vague entity that was widely considered rare, transient or a misdiagnosis, to a common, long-lasting and debilitating condition for which specific treatments are now being sought and tested.

Impact on awareness and understanding of FND

Prior to Edinburgh Neuroscience research, there was little information or support available to patients with FND, and they were widely stigmatised. In 2009, Edinburgh Neuroscience researchers addressed this by creating an online portal neurosymptoms.org. Updated in 2018, neurosymptoms.org is now (in 2020) available in 13 languages, of which the English version alone receives 50,000-60,000 hits per month [5.8a]. This website is widely recognised as the worldwide go-to portal that neurologists recommend to their patients [5.8b].

Edinburgh Neuroscience research and neurosymptoms.org have led to the formation of 2 new charities that work to raise awareness, provide peer support and campaign for better treatment and care of patients with FND. FND Hope was registered in 2012, with a UK branch opened in 2017, and by 2019 had 18,000 members in 100 countries [5.9a]. FND Action was registered in 2016, and by 2019 had 7,000 members and 100,000 Facebook followers [5.9c]).

Both charities credit their existence in part to the pioneering research of Edinburgh Neuroscience: the founder of FND Hope attests to the “ profound impact that the research of Professors Stone and Carson had on first [her] desire to start the charity and second, [her] ongoing motivation to grow it”, while the co-founder of FND Action stated that the research had been “ invaluable in helping gain a better understanding of FNDs, which in turn helps towards our plight of advocating for better care for those diagnosed. […] They have helped break down the barriers of stigma attached to these diagnoses” [5.9c].