Hello Everyone
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.
We have posted a new video of Karen on X. The video was filmed on Saturday the 8th of March and is 1¾ minutes long. It shows Karen talking about what UCLH have said. Please view the video and share it as widely as possible as soon as you can. You can view the video on our X account – our username is @TeamKarenGordon https://x.com/teamkarengordon
Meanwhile, we are still being caused a lot of stress, worry and work by ESHT as they are continuing to make issue about the cleaning of Karen’s hospital room. Karen is being caused a lot of over exertion and stress. This is reflected in her vital signs which were taken on Saturday the 8th at around mid-day. Karen’s BP was 177/114, and her pulse rate was 94. ESHT’s actions are having a bad effect on Karen’s ME, increasing her symptoms and her suffering.
ESHT are making issues about things that have previously been agreed and worked well, such as the timing of the cleaning each day and about the days that Karen is unable to have cleaning done because of her ME. We are all worried about why they making issues about these reasonable adjustments that Karen needs and that are in-line with ME advice. We are worried that they are trying to make us look bad and we are worried about why they would do this.
ESHT’s behaviour is particularly inappropriate while Karen is having to deal with the UCLH second opinion referral outcome.
Karen and Heather and Michael do think that the room cleaning is important and Karen tries to have the room cleaned as often as possible.
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.
Please keep sharing this petition and telling people about Karen’s situation.
Thank you to everyone for your support.
Best wishes to you all
Karen, Heather & Michael