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Simon Wilson Post 1

16 March 2026, 5:22 PM

why is MDT working essential in MND Care

MND affects people in so  may ways: physically, socially, cognitively, psychologically, behaviourally. we needs professionals who are effective in managing specific elements of the disease - I wont list them all but swallow,saliva, respiratory function, nutrition. mobility , equipment. occupation in its widest sense, advance care planning, managing comorbidities, social support, palliative care. we need those professionals with specific skills and knowledge to adress all the needs and potential needs of our clients living with MND. 

MND is hugely variable in terms of subtypes / rates of progression and not to mention social set ups and levels of support. All of the above combined often with psychological cognitive and behavioural impairment which can make living with MND and living with someone with MND extremely challenging. 

As someone who chairs and coordinates the MDT monthly meetings – being able to share decision making amongst those with experience in the team and particularly professional skills and knowledge is invaluable. I think particularly around decision making its important for those with less experience to understand the complex nature of this disease in terms how this can complicate decision planning. Sometimes decisions are put off despite supporting as best we can and giving all the information . Being able to support one another so we can support our clients and families living with MND and have a coordinated approach  is something that I think is understated in the NICE Guidelines but for me is an extremely important function of an effective  MDT. 

when someone with whom we've been working dies, discussing with other members of the MDT is useful as a debrief to ensure we can learn from what went well and what might be done better. despite best efforts things do not always go as well as we might like. 

these are just a few of my thoughts 

 

 

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Sean White Post 2 in reply to 1

16 March 2026, 8:02 PM

I agree that MDTs should be working together to agree how they will support people with MND to make decisions about their care. There are many barriers to people being able to make decisions including emotional avoidance (denial), lacking information, lacking support to weigh up the risks and benefits of any given decision and lacking insight into how decisions they make now will be perceived and valued by their future self. People with MND need support to be able to make informed decisions that are not dominated by their emotional response to the diagnosis. Working as an MDT we can seek to identify these barriers, develop a common approach and facilitate decisions that are based on evidence based information or predictions by experts in the field, and approaches that support acceptance and adaptation.