Hello Everyone
Karen has now been in Conquest hospital for 1 year and 1 month. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.?
In November we noticed an announcement on East Sussex Healthcare NHS Trusts’ web-site saying Joe Chadwick-Bell CEO of East Sussex Healthcare NHS Trust (ESHT) would be leaving later in the year. It said that after she left Steve Aumayer would be acting CEO until a new CEO was appointed. A few days later on the 25th when we sent a letter by email to Joe Chadwick-Bell we got an automated reply saying that she had handed over to Steve Aumayer.
When we posted a petition update on the 20th of November, 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 to UCLH - without her consent or knowledge. Things that had been agreed would be done before the referral was sent had not been done. The referral was a draft referral, had missing and inaccurate information and had been sent without a letter from us that had been agreed would be sent with the referral. Karen kept asking verbally and in writing for the referral to be put on hold until the things that were agreed would be done before the referral was sent to UCLH were done, but ESHT refused to put the referral on hold.
On Wednesday the 20th of November we sent a letter by email to the CEO of ESHT, the Trust Board and Heads of Nursing etc about what ESHT had done regarding sending the draft referral without Karen’s consent and asking again for the referral to be put on hold until the things that were agreed previously had been done. Joe Chadwick-Bell sent a short reply. It was the first time ever that she had replied to us! She said that they were acting in Karen’s best interests. But Karen has capacity and they should be respecting her decisions. They should not be doing things without her consent or knowledge. Even in circumstances in other cases where they have authority to act in 'best interests' they are supposed to include the patient and their relatives/chosen advocates and include them in decision making and not do things without their knowledge. Also it seems ridiculous that they would think that sending a referral with inaccurate and missing information was in Karen’s ‘best interests’. Clearly it was not.
On Friday the 22nd of November the ward consultant came to see Karen. He said there was going to be a professionals meeting about Karen and the second opinion referral on Tuesday the 26th.
On Monday the 25th of November we sent another letter by email to the acting CEO of ESHT and other ESHT management about the second opinion referral and asking again for the referral to be put on hold. The next day Steve Aumayer sent a very brief acknowledgement of receipt of our letter but he has not responded to what we said in our letter.
On Thursday the 28th of November the ward consultant came to see Karen. He, Karen and Heather talked about the professionals meeting. He said that at the meeting there was no mention of putting the referral to UCLH on hold and that it was still on-going. He said they had not been given a decision about the outcome of the referral yet. Karen was upset and angry that they were ignoring her wishes by not putting the referral on hold and was very worried that it would be considered with inaccurate and missing information.
In mid-December Karen’s local gastro consultant came back from leave. On Tuesday the 17th of December he came to see Karen and Heather. They talked about the draft referral having been sent to UCLH and about Karen’s comments about the referral and things that were inaccurate and missing in it. He agreed to amend the referral and that the amended referral would be sent with our letter to UCLH. The consultant has been amending the referral and Karen has been having it read to her a bit at a time. This process has been complicated and delayed by a hospital computer problem and Karen’s health. We also finished our letter to UCLH explaining a bit about Karen’s ME, some of the problems of her travelling to and being at a unit, why she needs remote setting up of home PN and asking them to please give Karen remote setting up of home PN. The final amended referral should replace the original draft referral that was sent to UCLH.
ESHT sending the referral without Karen’s consent and refusing to put it on hold has caused Karen a lot of stress, loss of sleep and rest and a lot of over exertion because of all the extra talking, compiling letters to ESHT and the worry. What ESHT did, delayed our letter to UCLH and the amended referral being completed and sent. It was counterproductive.
Karen’s PEG-J site continued to ooze and had also been sticky for quite a while. A swab showed heavy growth of infection so microbiology recommended another course of IV antibiotics, initially for a week. The PEG-J site was slow to improve so the course of IV antibiotics was extended several times. In the end Karen had them for three weeks and they were stopped on Boxing Day.
Sometimes when the fire alarm goes off on other wards it triggers a loud continuous noise from the air-vents in the ceiling in Karen’s room. In November we told you about one of the times this has happened before. The noise also comes from the air-vents in the ceiling of a passage way by the matrons office but Karen’s room is the only patient area that has the noisy vents. On Thursday the 12th of December there was a power cut during Karen’s evening sleep and the noise from the vents in Karen’s room started. The noise went on until the next day when it was eventually stopped. On Monday the 16th of December, a while before Karen’s evening sleep, the vent noise was triggered by a fire alarm again. Eventually after 6 hours at 11.40pm, a maintenance worker stopped the noise but 10 minutes later it started again. It continued for the rest of the night. Like the time in October, during the day the noise was stopped several times but then each time it started again after 10 minutes. It was finally stopped in the mid-afternoon after about 21 hours. Karen is sound sensitive so the noise caused her pain, disrupted her rests, sleep and concentration and made her feel more unwell. It was very difficult for Karen.
It had been arranged for Karen’s urinary catheter to be changed by a urology consultant on Monday the 6th of January. Unfortunately, Karen had an ME dip which started on the night of Saturday the 4th and Karen vomited 6 times on Sunday the 5th. Karen was still too unwell to have the catheter changed on the Monday, so it was postponed. It was changed on the 13th.
Karen continues to struggle with her ME, particularly because of the exertion of trying to get the home PN she needs to survive, the worry about what will happen if she is not given remote setting up of home PN, the heat, noise, light etc in hospital and the other difficulties of being in hospital.
We are all very worried about what the outcome of the referral will be. UCLH need to adjust their usual practices so that Karen with her very severe ME can access home PN. We desperately need UCLH to help Karen by agreeing to give her remote setting up of home PN.
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