Hello everyone.
On Wednesday the 14th of February we spoke to a consultant and a senior nurse from St Marks Hospital on the phone.
They said that Heather would be able to stay with Karen 24/7 for the duration of her stay and that Karen would be in a side room for the duration of her stay if she went to St Marks. However, these things should not have been in question anyway and St Marks should have agreed to them when they were asked a year ago.
We are concerned about many things that were said to Karen and Heather during the phone call.
Karen fears that because of the very severe ME she would not be able to do all the assessments etc that St Marks want her to do and therefore would not meet their expectations.
We knew there was a psychiatric element at the unit but it is even more than we expected. It is obvious that it is a very big part of how they work at the unit. They said it’s an essential part of being there and one of the conditions of being there.
Karen still feels that there should be the option of remote setting up of home PN (IV feeding) for her. St Marks said they do remote setting of home PN in very exceptional circumstances. Karen’s case is very exceptional because of the very severe ME. St Marks said they don’t see patients with Karen’s condition.
Karen, and Michael and Heather, do not feel that St Marks know enough about Karen’s ME from us for them to make an informed decision about not setting up home PN remotely for her while she in the hospital she is in - Conquest Hospital - instead of her travelling 100 miles to St Marks and being in the unit.
Karen also feels she cannot make an informed decision at present as she does not have enough information. Karen has always said that she would probably need more than one phone call with St Marks as there is so much to cover. She is asking for another phone call with St Marks.
Karen has been told that East Sussex Healthcare NHS Trust (ESHT) want a decision from her very soon about whether she agrees to go to St Marks. She is worried that she will not be given enough time to compile more questions for St Marks, to hear their responses and consider the information. People with severe ME have to do things a bit at a time and therefore need enough time for these things.
In the NHS Overview - Consent to Treatment, it says ‘the decision to either consent or not to consent to treatment must be made by the person, and must not be influenced by pressure’ from anyone.
Karen was told today that if she does not agree very soon to go to St Marks then ESHT might take legal action, might say she has to have another capacity assessment and that her case might go to the Court of Protection. Karen has already been formally assessed as having capacity twice in the last 18 months.
Karen is horrified at the threat of legal action being taken against her. She is very stressed.
Thank you to all of you who have signed and shared the petition. Thanks also to those of you who have chipped in to promote the petition and / or left supportive comments.
Please continue to tell people about this petition and continue to share it on-line.
Best wishes to you all.
Karen, Heather & Michael