Karen update: Solicitors letters & emails, Hickman line replacement & visit from hospital management
Photo: 30th of August 2026 - Karen having another blood transfusion.
Hello Everyone
Karen has now been in Conquest hospital in East Sussex for 2 years and 8 months.
Karen has been particularly unwell with the ME during the last few months and has had a lot of ME dips, often with vomiting. The heatwaves and noise of air con etc are two of the things that have made Karen more unwell and exhausted.
The blood transfusion that Karen had on Tuesday the 9th of June, because of her chronic anaemia, helped her haemoglobin (Hb) level but it was still low and has been dropping lower again. It has been very low in the last few weeks. The anaemia has been making Karen even more exhausted. On the 29th of August an on-call doctor came and told us that Karen’s Hb had dropped to 65 which meant she needed another blood transfusion. 65 is the lowest Karen’s Hb has ever been. The normal range is 125 – 165. We have been told previously that if someone’s Hb drops below 70 they should be given a blood transfusion. Karen had the blood transfusion that night. It was the 4th time that Karen has had a blood transfusion.
One of the two lines in Karen’s Hickman line had broken on Monday the 8th of June and the Hickman line needed replacing soon. It was arranged for the Hickman line to be done under GA in the afternoon on Friday the 12th of June. At 4.30pm on Friday the 12th we were told it had been cancelled due to an anaesthetist not being available as they had quite a lot of emergency cases that day. On Monday the 15th it was planned to replace the Hickman line that afternoon. Late that afternoon this was cancelled again by the hospital. On both days Karen had spent all day getting ready and waiting and was exhausted. After this, Karen was more unwell with the ME and was too unwell to have the line replaced on Wednesday the 17th when there was a slot available. However, the hospital insisted that maintenance be done on the sink in Karen’s room that day which meant that she had to be moved to another room temporarily because it would have been too noisy for Karen to be in her room while the maintenance was done.
There were already problems with the sink in Karen’s room when she was moved into that room from another side room last year. Previously, we had tried to arrange for sink maintenance to be done when Karen was out of her room for procedures, but it was not done. Then it was arranged for the 12th and the 15th, but both times it could not be done because each time Karen’s procedure was cancelled on these days. Being moved on the 17th made Karen even more unwell that day and for days afterwards. It was then planned for the line to be replaced on Wednesday the 24th.
The Hickman line was replaced on the 24th of June. The procedure and GA made Karen feel much more unwell and increased her generalised pain level and ME symptoms as well as her having a painful chest from the procedure. She was vomiting post op in recovery and then later on the ward.
Hickman lines have a cuff under the skin to help keep the line in place. In recovery the dressing on the site where the old cuff had been removed was soaked with fresh blood. By the next day there was more blood on it. Karen and Heather showed it to the ward consultant and they all agreed that a referral be done to the Vascular Access Team for them to come and look at it. A while later blood was seeping from under the dressing onto Karen’s chest, neck and under her chin. Later when someone from the vascular team came and looked at the site, they said they thought at least two of the sutures had come undone and that the site would need re suturing. This was very worrying, particularly as even with extra pain relief / local anaesthetic it would have been very painful and difficult for Karen, but if she had a GA for it that would also have been very difficult for her in other ways. They put steristrips on to hold the edges of the wound together. Karen and Heather asked to speak to the doctors about the re-suturing. They talked about it with the ward consultant the next day. The following week it was discussed more. It was decided that a consultant would come and look at the site when the dressing was next changed to review it. On Friday the 3rd of July when the dressing was changed, the wound was still open but was gradually starting to heal. It was decided that it would hopefully not need re-suturing. Fortunately, it gradually healed.
On Friday the 26th of June, Paul Smith, a Deputy Chief Nurse, came to Karen’s room. He was very loud and abrupt and said some horrible things. He kept interrupting Karen and Heather when they tried to speak. It was all very stressful for Karen and Heather and it was exhausting for Karen. We have not got time to explain much about his visit at the moment as things are very difficult and we want to get this update posted.
The TPN was stopped when the Hickman line broke and Karen did not have any TPN for three weeks. Then from the 29th of June it was re-introduced slowly over a week because of the risk of re-feeding syndrome. Being without feed increased Karen’s general weakness and fatigue and caused weight loss. Soon after the TPN was stopped Karen’s potassium level became too low again and this kept happening until the TPN was being re-introduced and had been built up to nearly Karen’s usual amount. Each time it was too low she had IV infusions of potassium.
On Wednesday the 10th of June Karen finished approving her solicitors’ letter to East Sussex Healthcare NHS Trusts’ (ESHT) solicitors and agreed for him to send it to them. Karen was relieved to finish it as she needed to get it sent. The letter was a response to a letter to Karen’s solicitor from ESHT’s solicitors. On the 11th of June Karen’s solicitor sent the letter by email to ESHT’’s solicitors. On Friday the 12th Karen’s solicitor emailed us and sent us a reply email he had received from ESHT’s solicitors. It was awful to have a reply on the day that Karen was due to have the Hickman line changed and had so much going on already.
On the 17th Karen’s solicitor sent us an email. He said that ESHT’s solicitors had phoned him without notice. Again, it was particularly difficult timing for Karen hearing from ESHT’s solicitors as she’d had such a difficult day talking about the Hickman line, being moved because of the sink maintenance being done and being so unwell.
On Thursday the 2nd of July we received an email from Karen’s solicitor with an email and letter that he had received that afternoon from ESHT’s solicitors. ESHT’s solicitors said that they were on leave Monday - Wednesday the next week and would prefer a response from Karen before that time. This was a completely unrealistic time frame for Karen. It was far too short for someone who is ill let alone someone with severe ME. Also, Karen’s solicitor was on leave the week the email was sent so Karen would not have been able to discuss things over email with him; and Karen had only had the Hickman line changed the week before. On the 13th Karen’s solicitor received an email chasing for a response to their letter. He emailed us and we compiled an update email to him. He then wrote a holding email to ESHTs solicitors explaining why Karen had not been able to respond to their letter yet. Receiving emails / letters and replying to them uses a lot of Karen’s energy and is time consuming and stressful for us all. ESHT continue their stance about discharging Karen without TPN if she does not agree to go to St Marks. Discharging Karen without TPN would be a death sentence for Karen.
On Monday the 3rd of August Karen’s urinary catheter was changed. As usual it was changed by a urology consultant in her room. The week before Karen had a particularly bad week with her health for several reasons. On the 3rd Karen had not fully recovered. She was still more unwell than usual and had to decide whether to postpone the appointment or not. She decided to go ahead with the catheter change that day but it was too much for her that day and she suffered more than usual with the ME afterwards. She became much more unwell again and the next day she was vomiting again.
On the 17th of August it was Karen’s 40th birthday.
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