Hello Everyone

It was good to have Karen’s case publicised on Sky News ‘The UK Tonight with Sarah-Jane Mee’ on Monday the 9th of December. Thank you to Sarah-Jane, Emily (Interviews Producer), Patrick (cameraman) and to everyone else at Sky News who played a part in producing and getting the piece aired. The programme is still available to view here: https://www.youtube.com/watch?v=kF8UAIL79pU

Karen has been in hospital for 1 year on the 19th of December. Karen needed to be admitted to hospital because she had severe malnutrition and dehydration as she could not tolerate enough feed and water down her PEG-J feeding tube but East Sussex Healthcare NHS Trust (ESHT) would not agree for her to be admitted to Conquest hospital. Eventually Karen was admitted because her PEG-J tube was malfunctioning and needed replacing. Karen was then restarted on IV fluid and TPN (IV feeding) which saved her life. It has been and continues to be very difficult and we still fear for Karen’s future. Karen is still asking for remote setting up of home PN (IV feeding) while she is in Conquest Hospital. Karen wants to go home, but it needs to be with PN and IV fluid as she needs these to survive.

When we posted our last update, Karen had just been told that the referral to University College London Hospital (UCLH) for a second opinion about remote setting up of home PN had been sent - without her consent or knowledge. The referral has missing and inaccurate information and has been sent without a letter from us that had been agreed would be sent with the referral. Karen has been asking for the referral to be put on hold until the things that were agreed would be done before the referral was sent to UCLH are done, but ESHT have been refusing to put the referral on hold. The situation has been causing Karen a lot of stress and over exertion. We hope to update you more somewhen after Christmas.

Karen has spent a lot of time in hospital with feeding problems during the last 3 years with several spells at home in between admissions. This Christmas will the 5th Christmas Karen has been in hospital and the 3rd Christmas she has spent in hospital in a row.

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 for Christmas.
Karen, Heather & Michael