This blog is part of the ‘Highlights from Perth’ collection of articles, where you can read about the content of some of the talks and posters presented at the 30th International Symposium on ALS/MND in Perth. All presentations have a code beginning with ‘C’ followed by a number (e.g. C50). This will help you locate the specific abstract mentioned throughout the post in the official abstract book.
Written by Rachel Boothman
While much is being done in the laboratory to find a cure for MND, the Symposium also provides an opportunity to share work aimed at improving care and support.
Providing health care services across a large geographical area can be challenging and it is important to review whether ways of working can be improved. Providers in Victoria, Australia were keen to develop existing services and introduce new clinics. A survey of people living with MND highlighted three important factors for quality care; services needed to be close to home, have specialist input and be well co-ordinated with effective communication. The introduction of two clinics resulted in a 70% reduction in travel, an increase in referrals, better clinical pathways for respiratory and dietetic care and high levels of advance care planning. Take home message: experienced leaders should carve out time to find new ways of working or ‘urgent will always drive out important’ and patients should be involved in design (C77) S Mathers.
Breaking bad news can be challenging, both for those giving it and those on the receiving end. It is well known delivery of a diagnosis of MND is important and a study looking at the views of neurologists, patients and carers has thrown more light on this area. People with MND said an empathetic bedside manner and sharing information were helpful. They felt neurologists were more skilled when they allowed longer time to discuss questions and expectations. More than half the neurologists in the study had received no training on giving the diagnosis. Take home message: training is essential, not only desirable (C78) S Aoun.
Up to 50% of people with MND experience cognitive or behavioural change, an area which has attracted the attention of researchers over recent years. While there are several measures which screen for these impairments, there are no structured recommendations or guidelines for their management. R Radakovic (C79) explained how researchers in the UK are developing the MiND Toolkit to fill this gap. With input from health and social care professionals, research experts and patients with lived experience, a tool has been designed and testing is underway.
Telehealth is another area gaining momentum among health care providers. K Atkins (C81) explained how the use of technology can alleviate the impact distance might have on care. A six-month audit carried out in Australia identified that telehealth was used by both medical and allied professional staff to deliver care remotely. This meant patients did not need to come into the clinic and could discuss care needs from their own homes. They estimated telehealth had saved 9,000 kilometres of travel and $6,000 for people with MND. Bringing care closer to home can be especially important for those with more advanced disease who find it difficult to travel.
Find out more about the topics discussed in Perth on our Periodic table of Symposium at www.mndassociation.org/symplive.