MND Study Day 2015: New developments in research and care – Implications for clinical practice

The third MND Study day for healthcare professionals organised by the Sheffield MND Care and Research Centre and SITraN took place on 14th May 2015. The yearly training event aims to give anyone working with people affected by MND the knowledge about new developments that are relevant to clinical practice.

Following a warm welcome by Professor Dame Pamela Shaw, items on the agenda were MND diagnosis and research, the latest study results on nutrition management, the different models and new developments in MND care, as well as the latest knowledge on cognitive impairment and behavioural changes in MND.

Consultant Neurologist Dr Chris McDermott presented and discussed the Red Flag Tool, a diagnostic tool for GPs developed by the MND Association together with MND specialists. He also gave an overview on MND research and care and pronounced his optimism due to recent advances. Dr Janine Kirby, Senior Lecturer in Translational Neuroscience, talked about gene discovery, genetic screening and the recent discovery of C9ORF72, the most common genetic form of MND. She explained how genetics allow us to model disease in the laboratory and to find the pathways affected in MND. This knowledge is essential to identify therapeutic targets or develop tools for early diagnosis. She further stressed the importance of identifying the different subtypes of MND and how current whole genome sequencing projects like Project MinE will help to develop personalised treatments.

McDermott

The next session revolved around nutrition management in MND. Dr Haris Stavroulakis presented the results of the UK wide study ProGas which compared different forms of insertion techniques for tube feeding through the stomach (gastrostomy), as well as attitudes towards gastrostomy in people affected by MND. The study, due to be published in the prestigious journal Lancet Neurology, provides evidence for the benefits of an early intervention in MND and was co-funded by SITraN and the MND Association. Home Enteral Feeding Specialist Dietician Sean White followed with a very insightful overview on the decision making process and the management of gastrostomy feeding. He highlighted, in particular, potential complications and how to prevent or deal with them. As for making the decision for gastrostomy, he recommended a holistic approach taking the overall impact on people’s lives into account and not just the health outcome.

Specialist Nurse Theresa Walsh

The afternoon session was devoted to new developments in MND care and was started off by MND Specialist Nurse Theresa Walsh. She presented a new web resource for people with MND who are experiencing breathing difficulties (www.mymnd.org.uk/myNIV). The resource was developed together with patients, carers, health care professionals, filmmakers and web designers. She said the aim of the resource was to make specialist information available to people who have no immediate access to a respiratory specialist. The website contains tips, practical advice and information, as well as instructional videos and patients talking about their experience with non-invasive ventilation. More technology news was provided by Dr Esther Hobson who presented her pilot study using a telehealth system for people with MND which has the potential to revolutionise access to specialist care in MND. Speech and Language Therapist Jennifer Benson then presented a first and very successful case study for voice banking using Model Talker. She discussed in detail the practicalities of voice recording to be used in communication aids when needed and is aiming to offer this service more widely to her MND patients. The sessions concluded with short presentations of different models of care in the community showing the vast differences in how care for MND patients is managed.

The last speaker of the day was Dr Daniel Blackburn who presented interesting insights into cognitive impairment and behavioural changes associated with MND. He pointed to the link between frontotemporal dementia (FTD) and MND in C9ORF72-related disease. FTD can result in personality changes, e.g. apathy and loss of empathy, which often has a social and sociological impact and can greatly increase the carer burden.

57 healthcare professionals attended the yearly training event which is approved by the Federation of Royal Colleges of Physicians of the United Kingdom for 6 category 1 (external) CPD credits. The diverse specialities of the attendees reflects the complex needs of people affected by MND; they included community matrons, specialist speech and language therapists, MND specialist nurses and care coordinators, dieticians, occupational therapists, consultant neurologists, respiratory physiologists, hospice practitioners, physiotherapists, as well as regional and local MND Association representatives