Hello Everyone,

The call with St Marks has been arranged for mid-day on Friday the 16th of August. We have been told that the call is scheduled for an hour which is far to long for someone with very severe ME.

We have not had any reply to the letter we sent to Dr Merritt Chief Medical Officer (CMO) and Dr Carruth Chief Nursing Officer (CNO) of East Sussex Healthcare NHS Trust (ESHT) on the 22nd of July after their ‘Bombshell’ letter to Karen which was given to her on the 18th of July. They are ignoring the information we and the ME specialist have given them.

ESHT are still sticking to their 48-hour deadline after the call with St Marks for Karen to give them her decision about whether she agrees to go to St Marks hospital Intestinal Rehabilitation Unit (IRU). Karen has major concerns about travelling to and being at St Marks IRU and has asked for remote setting up of home I/V feeding. Karen has been told that if she does not agree to go to St Marks, ESHT will stop her I/V feeding (TPN) and send her home - even though she needs I/V feeding to survive. She should not have to make such a serious healthcare decision with undue pressure due to an unrealistic and unreasonable deadline. Karen will suffer from Post Exertional Malaise (PEM) after the call. Karen needs rest after over-exertion (the call) and recovery time. It will take Karen more than 48 hours to even recover from the call. Patients with very severe ME also need more time than some other patients to consider information, make and convey decisions. The 48-hour deadline after the call is unsuitable and unreasonable for someone with very severe ME such as Karen as it does not allow recovery time from the call or time for considering the information, making the decision and conveying the decision. The decision by ESHT to give Karen a 48-hour deadline is irrational, unnecessary and unkind. It’s causing her even more stress and pressure. The deadline is unacceptable. Regulations state that people should not be pressured or coerced into giving consent.

Karen’s menstrual period is due on Monday/Tuesday. Karen is always much more unwell during her periods and usually also in the days prior to it and she is much more at risk of relapse during these times. An ME specialist wrote to Dr Merritt CMO and Dr Carruth CNO of ESHT in July, advising them that the 48-hour deadline is ‘unreasonable’ and that Karen should avoid over-exertion and undue pressure prior to and during her periods. The 48-hour deadline would mean that Karen would be expected to make and convey her decision in the days prior to her period. Even if the deadline is extended by a day/a few days it would still mean that Karen is expected to be making the decision and conveying the decision prior to and during her period. The deadline needs to be after her period has ended. If ESHT do not extend the deadline it will be dangerous to the ME, unfair and ignores Karen’s women’s rights to do with menstruation.

It's Karen’s birthday on Saturday the 17th of August. It’s already bad enough for Karen being in hospital on her birthday but having done a call she will be feeling much more unwell and worrying about her healthcare and future and fearing that it may be her last birthday alive.

We still have not had any responses from St Marks to Karen’s 2nd set of questions which we submitted more than 4 months ago. Karen still needs written answers to these to help her make an informed decision.

It’s now been more than 9 weeks since Karen’s PEG-J balloon burst. The balloon is supposed to hold the tube in place inside her abdomen. As the tube is unstable the doctors told Karen not to have any feed or water down the tube until it has been changed, so Karen has not had any PEG-J feed or water since then, which is a long time. Even when Karen has a usable PEG-J tube she is only able to tolerate very small amounts of PEG-J feed and water down the tube but it’s not good that she has not been able to have anything down the PEG-J tube for so long. A suitable date has not yet been arranged for the PEG-J tube to be changed in theatre under general anaesthetic (GA) although the staff say the tube needs changing, and we agree.

We have been trying to get the hospital to arrange a date for the tube to be changed. There have been several potential dates that we have talked to staff about and we wanted the tube change to be arranged for one of those dates, but it was not so the tube has not been changed yet. We are concerned that they are not changing the PEG-J tube in theatre under GA yet and that a suitable date for this has not been confirmed. It seems strange that the hospital are delaying getting the new PEG-J tube put in.

After a week of I/V antibiotics for Karen’s PEG-J site infection, microbiology extended the course for up to another week. In the end Karen had 2 weeks altogether of I/V antibiotics which finished on the 2nd of August.

Karen has been using a lot of energy and time preparing her responses to St Marks responses to her 1st set of questions.

Karen is very frightened about what is going to happen as the only 2 options she is being told to choose between both have major problems with her very severe ME. We strongly feel that Karen should be given a 3rd option of remote setting up of home I/V feeding and I/V fluid.

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. Thank you for your supportive comments. It is all much appreciated by us.

Please tell as many people as possible about Karen’s situation and the 48-hour deadline from ESHT and what you think about it and share this post on-line.

Thank you for your support.

Best wishes to you all.
Karen, Heather & Michael