Hello Everyone,

Karen spent a lot of time and energy preparing for the call with St Marks.

On Friday the 16th of August, Karen had the call with Dr Gabe, Lead Consultant at St Marks Intestinal Rehabilitation Unit (IRU) and a Nurse Consultant from St Marks IRU. Heather and Karen’s local gastroenterology Consultant were in the room with Karen. An advocacy worker from the 25% ME Support group for the severely affected was also on the ‘Teams’ call.

It was scheduled for 12.00pm. Unfortunately, Dr Gabe was not available then as he was in theatre so the call was delayed until nearly 12.45pm. Once it did start, after a while he had to leave the call as he was called away. So the call ended. We do understand it was unavoidable but it meant that the call was disjointed and it meant that hardly any of the important subjects we had planned to talk about got covered.

From near the start of the call Dr Gabe was adamant that he will not give Karen remote setting up of home PN (I/V feeding). Karen said if she can’t go (because of the very severe ME) to the unit then ESHT will stop her TPN and she will die.

When Dr Gabe got called away he suggested another call which everyone agreed to. We don’t yet know when it will be. Karen will need much more information from St Marks before she can make an informed decision.

At the time of writing this we have not heard anything further from East Sussex Healthcare NHS Trust (ESHT).

It was Karen’s birthday on Saturday the 17th of August. Karen was more exhausted and more unwell on her birthday following the call and this is continuing.

Karen continues to feel extremely anxious and scared about her healthcare situation. Heather and Michael also feel very anxious and scared.

Karen is having TPN in hospital. She’s been having it since a few days after she was admitted in December 2023. Karen cannot tolerate enough feed and water down the PEG-J tube to survive. This is why she needs home PN.

Thank you to everyone for your support.

Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to everyone who has chipped in to promote the petition. It is very generous of you and it makes a big difference. Thank you for your supportive comments. It is all much appreciated by us.

Thank you to all of you who have viewed and shared Karen’s videos and our posts on X. Karen’s latest video had nearly 40,000 views in the 1st 48 hours which is fantastic! Please keep sharing! 
@TeamKarenGordon https://x.com/teamkarengordon

Please also keep sharing this petition and telling people about Karen’s situation.

Thank you all for your support.

Best wishes to you all.
Karen, Heather & Michael