Hello everyone.
The TPN (I/V feeding) is going well. It has been gradually increased with no ill effects.
Karen has been told that if she does not agree to go to St Marks Hospital that East Sussex Healthcare NHS Trust may send her to another hospital outside of the Trust instead of the hospital where she is now.
There is an arrangement / agreement in place that a doctor from St Marks Hospital will phone Karen to discuss things about St Marks. We need to talk to them about the possibility of an assessment for home PN being done remotely while Karen is at Conquest Hospital to avoid all the problems of Karen going to and being at St Marks; so we can explain the special needs Karen has because of her very severe ME and how St Marks would meet these needs; and so they can answer any questions Karen has about the unit and the process.
However, suddenly in the early afternoon a junior member of staff came in and gave Heather a transfer form for St Marks and told her that Heather must sign it. Karen was in the middle of something else, but the member of staff was pressurising that it had to be read and signed straight away. Karen said to the member of staff who gave the form that she would be speaking to a doctor from St Marks before making any decisions. The member of staff said St Marks would not speak to Karen before the form was signed. This is obviously the wrong way round and contrary to what has been agreed that special arrangements would be made for Karen. Karen has asked to speak to her consultant at Conquest hospital.
The form says that visiting is limited and that patients are moved to a bay after a screening process. The form is the same as the form Karen was given to sign in March 2023 which she said she could not agree to as it did not meet her needs.
Karen has been given Friday the 5th as a likely date for a procedure to change her PEG-J feeding tube in theatre under GA. It is particularly unfair for Karen to be given anything else to deal with other than the forthcoming procedure at this time. This is all far too stressful & exhausting for Karen.
Thank you all for your support.
Best wishes to you all
Karen, Heather & Michael