Rachael received a follow up letter from Dr E after her attendance at his clinic on the previous day. He referred to the difficulties that Rachael has been having with her breathing over the last few weeks. He also mentioned Rachael's daughter's awareness of Rachael's current condition.
Dr E then said that Rachael seems more comfortable with the new setting on the NIV machine, the humidification and the increased support that she is having.
He then listed Rachael's medications. She continues to take Riluzole, Pregabalin and Baclofen. She has found benefit from Mucodyne. She takes Lorazepam as required and 5 to 10mls Oramorph per day. She also takes an iron supplement.
Dr E then wrote about the discussion he and Rachael had had about the practical implications of moving to invasive ventilation. At the moment Rachael is waiting for a date when someone from Wy Hospital will visit her to discuss this with her. Dr E said that Rachael would like to consider this option as her life is still fun. He said that Rachael knows that he is not particularly an advocate of invasive ventilation in MND but he sees that his role is to give Rachael the options so that she can decide. He is happy to help her with this along with his colleagues from Wy Hospital.
Dr E said that they had touched on the complexities of invasive ventilation during their discussion. Rachael had said that she was quite concerned about comments that she has heard regarding the risk of dementia in patients on long term ventilation. Dr E understands that this does not happen in every individual but he was not able to give her any hard facts at this point. He explained that as communication becomes more difficult in people living with MND it is often very difficult to see whether people have cognitive impairments. He has no concerns about Rachael's cognition now.
Dr E finished the letter by saying that Rachael wishes to be fully involved in the discussions and said that only if she was no longer able to communicate decisions about her care should be deferred to Dr E and Dr B.