2023 – the year we Change the Conversation about MND?

Our wish for 2023 is that the conversation between a neurologist and their patient about motor neurone disease changes for good.

The phrase ‘changing the conversation’ was first used by Professor Chris McDermott on BBC Breakfast. It described his hope that the conversation on diagnosis could be one of hope rather than despair, where patients are routinely offered a place on a trial and eventually offered treatments. 

Most of us with the disease have felt some despair at the lack of options when diagnosed and the generally negative tone of most of the conversations we have. We want to change that! There is now unprecedented hope in the MND community and it is time for medical professionals to stop seeing MND patients as doomed. Instead of telling us to go to the nearest hospice, talk to us about the best trial! 

So, in 2023 we will be campaigning and working for:

– the new UK MND Research Institute to ramp up its work so that we start to see some promising new treatments coming through.

– an approach to trials that allows for the maximum number of patients to take part along with better information and support to enable patients to decide what is best for them. 

– new treatments which have shown proven significant effect in pivotal trials to be approved speedily. 

N.b. “proven significant effect” as evaluated and agreed upon by a widespread consensus of leading neuroscientists.

– and, most importantly, improved communication with all UK neurologists that work with MND patientsparticularly those not so readily in touch with the major MND research centres, so that they understand the trials available and the unprecedented hope we now have. 

Will you join us? Let us know what you think at patientsunited2endmnd@gmail.com and on Twitter @united2endmnd