Myasthenia gravis

[Saffron]

Does anyone have experience with myasthenia gravis? Coping with the meds/ pain? NHS access to palliative care planning?

My friend's elderly mother was diagnosed with myasthenia a couple years ago. Recently she has taken a turn for the worse, but there is no care strategy in place. My friend is struggling with decision making, e.g. when to phone for an ambulance vs hold off for GP appointment. Her mother is/was very independent and will sometimes try to refuse help until things have worsened to near catastrophic levels. NHS 111 have not been very useful unfortunately. They don't seem to have much knowledge on this condition.

My friend wants to help her mother to be assessed by a specialist care team (possibly palliative care), but she's not sure how to get the wheels in motion.

Any advice? xx

[jojop]

Hi Saffron, my mum was in latter stages of dementia. One morning got up and her speech slurring, no swallow so called ambulance. They assessed her, most of vitals all okay apart from chest infection. They asked me about taking her to hospital and what did I feel about it. I said if they could do any treatment at home same as if they could in hospital. They referred us to Guys & St Thomas at Home Care team. They were brilliant, gave antibiotics and fluids at home for 3 days and also referred us to the Palliative care team as mum was at end stage. The support and care we received was so good. Alternatively speak to GP and see if they can help

Hope this is of some help and your friend gets support.

[Saffron]

Thank you jojop. That is very useful to know. I will pass this information to my friend. xx