Hello Everyone

It was good to have Karen’s case publicised in articles in ‘The Times’ newspaper and on-line. Thank you to Fiona Hamilton, chief reporter for ‘The Times’ who wrote the articles and thank you to ‘The Times’ for publishing them.

Karen has now been in Conquest hospital for 10 months. Karen is continuing to have TPN (I/V feeding) in hospital.

On Friday the 11th of October Karen had her PEG-J tube and her urinary catheter changed under GA in theatre. Karen had had to wait more than 4 months for the PEG-J tube to be changed. As usual she was much more unwell afterwards particularly in the first few days. Karen has been slowly recovering over the weeks since.

Karen can only tolerate small amounts of PEG-J feed and water down the PEG-J tube, but has the tube so she can have what she can manage down it when able. Since the PEG-J tube has been changed Karen has only been able to tolerate very small amounts of water down it so far. Even when Karen has a PEG-J tube for a long time, 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.

As you know a few months ago East Sussex Healthcare NHS Trust threatened to stop Karen's TPN if she did not agree very soon to go to St Marks. Karen and Heather and Michael are still worried that they may stop the TPN somewhen. Karen cannot survive without the TPN.

Karen still needs remote setting up of home PN while she is in Conquest hospital, with specialist staff from a tertiary TPN centre (such as St Marks) liaising with Karen, her parents and with staff at Conquest hospital.

Unfortunately, in the weeks after the PEG-J tube change, the PEG-J site continued to leak gastric fluid even with a replacement tube in situ. This was unexpected. The fluid burnt the skin making it red and painful. Sometimes quite a large amount of fluid came out of the PEG-J site. We have been using a different barrier cream which has been helping more than the original one but the site has still been very bad at times. The leakage has become less recently.

Unfortunately, Karen’s recovery from the tube change procedure has been hampered by problems with noise on the ward. At 7:30pm on Sunday the 13th the fire alarm went off which woke Karen from her evening sleep. When it stopped there was a loud continuous noise in the air-vents in the ceiling in Karen’s room. After speaking to the nurse in charge and a site manager this noise was eventually stopped after nearly 1½ hours. But about 10 minutes later a different noise started coming from the vents. We were told this noise couldn’t be stopped during the night. The next morning, we spoke to Matron’s PA and later to the matron. Just before 2.00pm the maintenance team came and adjusted something in the ceiling in the corridor outside Karen's room, then the noise stopped - but only for 10 minutes again. Shortly after that, the team came back again and then the noise was finally stopped at last after 19 hours. Karen is sound sensitive so the noise caused her pain and disrupted her concentration, rest and sleep and made the ME worse. It was very difficult for Karen especially as it was so soon after her procedure.

In the first weeks after the procedure there was even more noise from some of the patients, including at night, which was all very unfortunate for Karen and has made recovering even more difficult for her.

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