Motor neurone disease: through patient and practitioner eyes

Abstract

The inaugural joint conference of the Motor Neurone Disease Association (MND Association) and the Royal College of Nursing (RCN) was held on 5 November 2014 at the RCN headquarters in London. The conference is to be followed by a programme of educational open lectures on different aspects of MND throughout 2015 and then with an e-learning package, to be released in 2016. The aim of the event was to highlight the importance of individualised patient care. The day focused on: how the different roles within the multidisciplinary health-care team come together to provide the highest quality of care; and how to increase understanding of this complex and devastating disease. The four themes of the event were management of: cognitive; limb; respiratory; and bulbar symptoms. The theme of palliative care and support ran through all sessions. The meeting was attended by a varied group of health professionals, including specialist and non-specialist nurses, palliative and hospice nurses, occupational therapists, general practitioners and consultants. The talks, delivered by different practitioners within the healthcare team, provided an overall picture of the multiple aspects of care involved for MND patients at all stages of the disease. The meeting was opened by speeches from Sally Light, Chief Executive of the MND Association, Peter Carter, Chief Executive and General Secretary of the RCN, and Baroness Finlay of Llandaff, Professor of Palliative Medicine at Cardiff University School of Medicine, patron of the MND Association and independent crossbench member of the House of Lords. Baroness Findlay importantly reminded the audience that caring for patients with MND or any other disease, is about doing everything one can, regardless of one’s specific role in the health-care team, to ensure the patient feels valued. These words set the scene for what was a fascinating day of talks, sharing knowledge and catching up. The morning session began with a thought-provoking keynote lecture, also by Baroness Finlay, on choices at end of life and how the care team could have a positive influence in these discussions. Lucy Davies, a GP and clinical support fellow for rare diseases from the Royal College of General Practitioners described the difficulty of diagnosing Jennifer Franklin