Partners in Treatment Innovation for Functional Neurological Disorders: Patients, Families and Providers
3-4 March 2017, Emory University, Atlanta
It was an honour to attend this special meeting devoted to FND hosted by Emory University in Atlanta. This was a unique event to which leading researchers and clinicians involved in FND were invited alongside an open invitation to patients and carers with the condition. The meeting was made possible by a generous donation from Mark and Barbara Klein. Barbara has FND herself and has recently written about her experiences for Emory Medicine Magazine.
The two day meeting focused on treatment and how patients with FND can work in partnership with health professionals. There were lectures on the scope of the problem, the importance of good communication, both listening and explaining, physiotherapy, psychotherapy and inpatient rehabilitation. We heard from patients who had gone through treatment at Emory for FND and the challenges they had faced, especially in terms of stigma, obtaining a diagnosis and treatment, but also positive experiences of recovery. It was great to hear contributions from patients and patient advocacy groups who had attended the meeting. Finally we had some constructive sessions on organising care for FND from a US perspective and thoughts on funding from some of the leading US funders of medical research. This meeting followed on from a closed invitation meeting in 2015 which has been written up as an open access article – http://journal.frontiersin.
FND is a disorder at the interface of so many different disciplines and perspectives that this can create difficulties – both between health professionals and between health professionals and patients. I was impressed by the chairmanship of Professor Mark Rapaport (Emory Psychiatry) and Karen Rommelfanger (Emory Neuroethics) who organised and introduced the meeting. Emory’s new Brain Health Center in which Neurology, Psychiatry, Neurosurgery and Rehabilitation all work together in the same building embodies a multidisciplinary approach which also was the hallmark of the meeting. FND is a complex disorder and there is no ‘one size fits all’ approach. There is a huge mismatch between the numbers of patients with FND and the numbers of health professionals and researchers working to change the current situation, but I took many positives from the meeting. Professor Rapaport summed this up best when he observed the enormous opportunities that we all have, patients and health professionals, to change the landscape of understanding and treatment of FND for the future.
Dr Jon Stone
Consultant Neurologist and Honorary Reader, Edinburgh