Hello Everyone,

Karen has been in Conquest hospital for 9½ months.

Unfortunately, since the 28th of September Karen has a cold virus which is making her feel more unwell.

The arrangement for Karen to have her urinary catheter changed by a urology consultant on the 30th of August was cancelled because Karen was too unwell with an ME dip to have it done then. It was re-arranged for the 13th of September. Unfortunately, this was cancelled on the day due to the urology consultant having a family emergency. A new date had been arranged for the catheter to be changed on the 2nd of October, but this was cancelled because Karen was too unwell to have it done then because she had the cold virus.

It's been nearly 4 months since Karen’s PEG-J tube retaining balloon burst leaving the PEG-J tube unstable and unable to be used and causing gastric fluid to leak from the site and burn the skin. We’ve been trying to get Karen’s PEG-J tube changed, but for more than 3 months the hospital did not arrange it. At last, a date was recently offered for the PEG-J tube change and on Monday it was confirmed that it will be on the 11th of October. There is now a plan for the urinary catheter to be changed by a urology consultant on the 11th while Karen is under GA in theatre for the PEG-J tube change.

Even when Karen has a working PEG-J tube she cannot tolerate anywhere near enough PEG-J feed and water down the PEG-J tube to sustain her so she will still need I/V feeding and I/V fluid.

The patient in the room near Karen whose radio was disturbing her, was there for 3 weeks. In the last couple of months, a patient in a bay nearby has been becoming increasingly agitated and noisy. They shout and shriek for many hours at a time in the day and sometimes the night. We know the patient cannot help it but it is very difficult for Karen. It increases her pain, makes it hard for her to concentrate, disturbs her rests and sleeps and makes her feel more exhausted and unwell. There are also some other noisy patients in that same bay.

Karen continues to feel stressed and worried about the problems caused by East Sussex Healthcare NHS Trust (ESHT) and St Marks hospital about getting setting up of home PN (I/V feeding) for Karen and about the threats from ESHT to stop her TPN.

We continue to ask for remote setting up of home PN for Karen while she
 is in Conquest hospital. 

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