Thanks to everyone who has contacted Joe Chadwick-Bell, the CEO of East Sussex Healthcare NHS Trust (ESHT), about Karen. It is very helpful of you. 

It has been more than 2 months since we emailed the CEO of ESHT. She still has not responded to us about our serious concerns and our call for urgent action. Eventually, more than 6 weeks after our MP, Maria Caulfield (who is a Health Minister), contacted the CEO, the CEO sent her a letter in response. It contained information that is contradictory to what we have been told and it didn’t even mention most of our concerns. The CEO still has not agreed to any of the points the petition is calling for.

Recently, Karen was asked if she would agree to a referral to St Marks. Karen has agreed to be referred to St Marks for setting up of home PN (I/V feeding). However, there are many things that still need to be sorted out.

St Marks have previously not agreed to Heather staying with Karen 24/7 and giving her care and support and for Karen to have a side-room for the duration of the admission if she went to St Marks. As well as these two major needs, there are lots of other things that Karen needs and that Karen can’t do because of the very severe ME. All of these things would need to be talked about and accepted by St Marks.

In any case Karen is asking for remote setting up of home PN to avoid these and other issues with St Marks and having to travel approx. 100 miles, as travelling makes her much more unwell and makes the ME worse. The travelling, and being at St Marks, could cause a serious relapse of the ME which would significantly reduce Karen’s quality of life, maybe permanently. A serious relapse could also be life threatening.

We have been told that the Nursing Management at ESHT are saying that they will not allow Karen to come in locally for PN until a long-term plan is agreed. We all agree that Karen needs home PN, but there is not time to wait until it is agreed how home PN will be arranged. Karen is extremely thin, continuing to get thinner and is dehydrated. The priority at the moment is the short term. We all strongly feel that Karen needs PN very soon at a local hospital in a side room with Heather and that arrangements should be made with us without delay for admission to a local hospital early in the week of the 4th of December. She needs PN now to save her life.

Karen is worried that she will be pressurised to go to St Marks without having chance to properly discuss the benefits of home PN being set up remotely while at a local hospital and the risks for her of an admission to St Marks; without the things that she needs because of the very severe ME being agreed on and provided; and without St Marks accepting that she cannot do all of the usual assessments.

Karen is particularly unfit to undergo a long and gruelling journey to St Marks at the moment because she is so malnourished and underweight and we don’t think that it would be safe for her.

Karen is very stressed and exhausted.

Thank you to all of you who have signed and shared the petition. Thanks also to those of you who have chipped in to promote the petition and / or left a supportive comment. It is all really appreciated by us. Please continue to tell people about this petition and continue to share it on-line so that more people can sign to try to help Karen.

Best wishes to you all
Karen, Heather & Michael