Hello Everyone,

Karen has chronic anaemia. Her haemoglobin has been very low for some time - around 80 and sometimes as low as 77 (the normal range is 125-165).

On Wednesday the 15th of May, Karen had an iron I/V infusion. She has had iron infusions twice before and both times they have made her a lot more unwell several days after the infusion. The adverse effects included high temperature, vomiting, increased pain, increased feeling of unwellness and raised inflammatory marker in the blood. The effects continued for a number of days. Karen & Heather had explained to staff that Karen would not be able to over exert herself during the days after the infusion and also maybe too unwell to do so. But on Friday the 17th of May, 2 days after the iron infusion Karen was given St Marks response to her written questions.

We are concerned about what St Marks said in their response. Karen needs time to consider the information and her response to it, so we cannot write much about it here at the moment.

We have been told it is St Marks full response, but there are many questions they have not answered and they have not answered the second set of questions. All of the questions are important and Karen needs all the answers to make an informed decision.

In April, an ME specialist wrote to the consultant at St Marks Intestinal Rehabilitation Unit in support of Karen being given remote setting up of Home PN (I/V feeding). The consultant at St Marks replied to this letter. In May, the ME specialist replied to the St Marks consultant’s letter. The St Marks consultant sent a short reply to the ME specialist’s letter and made it clear that the ME specialist’s advice and input are not welcome to the St Marks consultant.

For several weeks Karen has had redness and intermittent pain etc around the site of her PEG-J feeding tube on her abdomen. A swab that was taken showed infection. On Tuesday the 21st of May Karen was started on a 7-day course of I/V antibiotics.

So, what with the anaemia, iron infusion, the infection, I/V antibiotics, ongoing stress and the exertion of dealing with the response from St Marks, Karen is having a particularly difficult time.

Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to those of you who have left supportive comments and/or chipped in to promote the petition. It is all much appreciated by us.

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

Best wishes to you all.
Karen, Heather & Michael