Photo: August 2025 - Karen with her new PICC line 4 days after it had been put in.
Hello Everyone
Karen has now been in Conquest hospital for 1 year and 9 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.
Karen had been started on IV antibiotics for a PEG-J site infection on Thursday the 28th of August. The site was slow to improve and so the course was extended from 5 to 7 days. On Wednesday the 3rd of September the ward consultant said they would come back the next day to review the PEG-J site and decide whether to continue the antibiotics. They did not come back the next day. In the afternoon we gave messages for the doctors via a nurse asking for a consultant or other doctor to review the site before the antibiotic was stopped. But no doctor came to see Karen that day and the antibiotic was stopped. Although the site was better than it was when the antibiotic was started it was still a bit sticky and it was still itchy. We felt we would rather the course of antibiotics had been extended by a few days if necessary than Karen having to have a whole new course of antibiotics because the infection had not been cleared properly.
In July, Karen was told that ESHT wanted her to have (another) mental capacity assessment. She was told it would be done by her gastroenterology consultant. ESHT also wanted a mental capacity practitioner from ESHT to be at the assessment.
On Tuesday the 9th of September Karen had the mental capacity assessment. A social worker adviser from the 25% ME group (for those affected by severe / very severe ME) was Karen’s witness. He did this by phone. As planned Karen did the assessment in two 15-minute sessions with a ½ hour break in between them for Karen to rest. Near the end of the 2nd session Karen’s consultant told her that his provisional view from the assessment was that Karen does have mental capacity. Although we knew Karen has capacity it was a relief that the outcome of the assessment is that she does have capacity. The outcome does not stop the problems with ESHT and St Marks though. The assessment made Karen more exhausted and unwell and it took weeks for Karen to recover from. Since the assessment, Karen’s consultant has confirmed that the outcome is that Karen does have mental capacity.
Karen’s PEG-J site got worse again and more painful so on Thursday the 11th of September Karen was started on IV antibiotics again. Like before the site was slow to improve, so the course was extended several times. This time she had the antibiotic for 10 days and the site was a lot better when it was stopped.
From around mid-September Karen has been particularly unwell with the ME. On Saturday the 20th, Karen had a particularly bad ME dip and vomited 10 times. On Monday the 22nd Karen was still recovering. There was some maintenance work on the ward Karen is on. The noise was difficult for Karen. The next day she felt increasingly unwell with an ME dip.
On the morning of Friday the 26th, work started on the ward Karen is in to install Broadband fibre cables. This involved technicians climbing up ladders in the corridor to the ceiling space. They were noisy and kept talking and shouting to each other down the ward. Some of the technicians were outside Karen’s room for a lot of the time. This would have always been very difficult for Karen but the timing was really unfortunate as it was the day Karen’s urinary catheter was due to be changed. The work started a while before the urologist came to change Karen’s urinary catheter in her side room.
Unfortunately, the catheter change was more difficult and painful than usual. Karen had a lot of problems with her catheter not draining properly afterwards, bladder spasms and severe pain. Karen also felt increasingly unwell with the ME during the day. The Broadband work continued until late afternoon. The bladder / catheter problems continued and kept waking Karen up during her evening sleep and in the night. At 9.30pm she started vomiting and she vomited several times during the night. It was an awful night with these things, very little sleep and severe ME pain. Karen continued to have bladder / catheter problems for some time, particularly the first few days. They gradually improved.
On Monday the 29th of September we received an email from Karen’s solicitor. The solicitor had received a response from ESHT's solicitors to the letter he had sent to Jayne Black CEO of ESHT on the 20th of August. ESHT's solicitors also sent him a clinical note by Karen’s gastroenterology consultant about the mental capacity assessment and a copy of a letter to ESHT’s Chief Medical Officer from Dr Christopher Tibbs the Acting Medical Director of South East Region NHS England about home PN. We had been asking since April for the name and the contact details of the Regional Medical Director and information about the conversations that ESHT had had with them and three tertiary nutrition centres. Jayne Black CEO, had refused to give us this information and we still have not been given the information about the conversations, but the letter did give us the name and contact details of the RMD. ESHT’s solicitors said in their letter about discharging Karen without TPN if she does not agree to go to St Marks. This would be a death sentence for Karen.
At 8.30am on the 29th the Broadband technicians arrived on the ward again. Heather and Karen spoke to a ward sister about the noise. The sister asked them to be quieter and talk less near Karen’s room. They were quieter for a while but they did get noisier again later. The technicians were on and off the ward for a couple of weeks and we sometimes heard noises in the ceiling above Karen’s room etc.
We all continue to be worried and stressed about ESHT’s threats to take Karen to Court and to try to evict her from hospital without the TPN she needs to survive. The admin caused by ESHT and St Marks is continuing to be stressful and is also exhausting for Karen. The admin work includes thinking, talking, Karen having things read to her and composing emails. It uses a lot of time and energy and causes Karen overexertion and worsening of the ME symptoms. There is a lot of pressure to get things done.
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.
Thank you to everyone for your support.
Best wishes to you all
Karen, Heather & Michael