I have been in this role for 6 months, what I have noticed is the speed of things which is really different from other neurological conditions. There is a tension between giving people time to think about an intervention e,g a gastronomy vs when it is safe for them have it done. Last week I experienced the disappointment / anger at the fact the procedure could not be done. However it would have been detrimental to the person with MND. 

It is difficult in clinic to manage this balance with providing patient centered and the deterioration of the condition. We have started to have a palliative care nurse in one of our clinics, the reaction of  the patients is generally one of confusion, they do not understand why they would need to speak to someone as they are not at the end of the, It is reeducating people what palliative means - terminal illness and giving them information so they can complete elements of the document provided by the MNDA with a list of their wishes. 

Another difficulty with ensuring patient centered care is people not engaging with the diagnosis. They do not engage with services until crisis point which can mean there are less options for them and creates a more stressful dynamic. 

I always say to our patients, you have MND and we are here to help you manage your condition and you can take what you want and leave those things you aren't interested but we will keep offering as we know people do change their mind and that is okay too.