University College London Hospitals NHS Foundation Trust has communicated to the Gordon family that they will not allow Karen to have IV feeding (TPN) in a home based setting.
Petition Update
We have been told that UCLH have said they will not give Karen remote setting up of home PN (IV feeding). We are devastated and very worried.
In common with St Marks hospital Intestinal Rehabilitation Unit, UCLH are refusing to accept the harm that would be caused to Karen by her going to and being at St Marks. They are not willing to understand and believe the facts about severe ME. This information is readily available and it is unacceptable for people to ignore the effects of things on very severe ME.
It is unacceptable that these tertiary centres are refusing to adjust their usual practices for Karen with her very severe ME so that she can access home PN by being given remote setting up of home PN while she is in Conquest hospital without the ME being made worse by travelling to and being at a unit. Also, St Marks are reluctant to give Karen home PN even if she did go to the unit there. However, Karen needs PN to survive.
Karen needs East Sussex Healthcare NHS Trust (ESHT) to give her time to consider what UCLH have said.
The family has posted a new video of Karen on X (@TeamKarenGordon) that was filmed on Saturday the 8th of March and is 1¾ minutes long. Karen talks a about what UCLH have said.
Petition
Please see the link to sign the petition (if you haven't already done so) below
The ME Association continues to be in correspondence with the Gordon family and we are doing what we can to help with the ongoing situation.