Bringing the world of child neurology together

Abstract

The Committee on Environment, Public Health and Food Safety of the European Parliament recently held a workshop on ‘Living with a neurological brain disorder: Taking control of your life’. The intention was to discuss how mobile communication technologies can support monitoring health and care delivery (mHealth). Themes included living with a brain disorder and the future potential for mHealth. Patient-held data-gathering and profiling has great potential to monitor natural history and interventions in a range of neurological disorders. Continuity of care is essential to good health care, and the enduring relationship with our patients is one of the special privileges of a follow-up spanning infancy to adulthood. This continuity may be disrupted during and after transition to adult services. An mHealth record could help reconcile disparities between paediatric and adult services by monitoring trends in well-being or ill health seamlessly throughout the lifespan. Parents have written eloquently about their experiences of living with children with neurodisability,1 and of taking the decision to allow their child to undergo neuromodulation neurosurgery.2 These memoirs can help us to deliver better care. Making complex clinical decisions is facilitated through the use of a broad clinical gaze,3 which transforms a potentially technocratic event into a socially sensitive process, taking into account clinical necessity as well as parental and child perspectives. In the swirl of financial constraints and political turmoil, our patients remain the driving force exhorting us to do better. The message below was sent to me by a young adult who underwent deep brain stimulation at the age of thirteen: ‘Thank you for all your help. If I may have one moment to just thank you and your team again, watching that back (referring to a video of his dystonic scoliosis) brought tears to my eyes remembering just how far I have come.’ Dealing in rare childhood neurological disorders takes particularly dedicated medical and allied health practitioners; many in the UK have come from all over the world, united by the common needs of child neurology. How exactly our relations with European institutions and colleagues will be affected by the UK's decision to leave the European Union (EU) is not yet known. A curtailing of the Erasmus exchange programme, for instance, would diminish the clinical experience of UK students and graduates, not least because we will no longer be hosts to enthusiastic EU clinicians in training. At a deeper level, collaborative research and development with EU partners including access to grant-funding and networked research may suffer. A visible early impact of Brexit could be the likely relocation of the European Medicines Agency away from the UK. These momentous decisions should not diminish our determination to deliver the best quality care to children with neurological disorders. (During the summer after the referendum, I was surprised to find a tea trolley making its way up the ward for parents and staff after more than 25 years absence from the National Health Service. We may have lost our place in the EU but we have regained the Great British Tea Break. And that certainly brought a smile to my face!) While delivering a seminar on movement disorders in cerebral palsy at the European Academy of Neurology in Copenhagen, I was delighted to discover that ‘the developing brain’ is one of the major themes supported by the European Brain Council (EBC) to inform clinical research themes for possible EU grant funding.4 Through this initiative, I hope we can encourage the EBC to support more of our work. This year, the British Paediatric Neurology Association (BPNA) is hosting its 43rd Annual Conference in Cambridge, UK. It is a great pleasure to welcome Dr Adam Kirton from Alberta, Canada as our Ronnie Mac Keith Lecturer, along with many old and new friends from all over the world.5