Hello Everyone,

We have been told that Karen might be given a deadline for when she has to give a decision about whether she agrees to go to St Marks Intestinal Rehabilitation Unit. Karen was told again that if she does not agree to go to St Marks then East Sussex Healthcare NHS Trust (ESHT) might take legal action, might say that she has to have another capacity assessment and say that her case may go to the Court of Protection. Or ESHT might send Karen home without IV feeding which she could not survive without. Karen has already been formally assessed as having capacity twice in about the last 18 months.

Karen is extremely stressed and exhausted.

We submitted Karen’s first set of questions for St Marks near the end of February but still have not been given any of the answers yet. We have also submitted Karen’s second set of questions.

Karen is worried that she will not be given enough time for someone with very severe ME and bearing in mind Karen’s ME dips (flare ups) and other things that are happening at the hospital to have the answers read to her, consider the information and make an informed decision.

Karen is still asking for another phone call with St Marks after she has been given the answers to her written questions and had them read to her. Karen has always said that she would need more than one phone call with St Marks.

The 100 mile journey to St Marks and being in the unit would make Karen much more unwell and cause relapses in the ME. It would cause a lot of unnecessary suffering which could be avoided. It is Karen who would have to suffer the worsening of her symptoms. Her quality of life would be made worse. A relapse could be permanent. It could cause a major relapse which could involve paralysis, being unable to speak, for example. It could be life threatening.

The unit has a strong psychiatric approach.

We have sent a letter by email to St Marks asking them for remote setting up of home PN for Karen while she is in the hospital she is in now – Conquest hospital.

Karen’s cat Sweety was seen by the vet recently. He has lost more weight again. The vet said Sweety is on palliative care. Sweety is very poorly and we are all very upset – even more so as Karen and Heather are not with him at home giving him love and support.

During the phone call on the 14th of February, the St Marks consultant said that St Marks do set up home PN remotely in exceptional circumstances. Karen having very severe M.E. is an exceptional circumstance. Another exceptional circumstance is Karen’s urgent need to get home to be with her very ill cat.

Karen is worried that if the team at the unit ignore the reasons for giving her remote setting up of home PN that they would not accept the things that she could not do because of the very severe M.E. if she was at the unit. Karen is worried that the team have unrealistic expectations of what she would be able to do while at the unit and what would be achieved.

Over exertion and physical and emotional stress are harmful for people with M.E. 

If St Marks give Karen the option of remote setting up of home PN it would immediately relieve her severe stress and worry.

We do not think that it is fair or right if Karen is not given the option of remote setting up of home PN when there are so many valid problems and risks for her of going to and being at St Marks and knowing that there will be serious consequences for Karen if she does not get home PN as she needs it to survive.

Thank you so much to everyone who has signed and shared the petition. Thanks also to those of you who have chipped in to promote the petition. It is much appreciated by us.

Please continue to tell people about this petition and continue to share it on-line.

Thanks again for your support.

Best wishes to you all.
Karen, Heather & Michael