Hello Everyone

Karen has now been in Conquest hospital for 1 year and 8 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.

There continued to be problems with Karen’s PICC line, so in May it was suggested that the PICC line be changed and Karen agreed to this. The vascular access team wanted to put the new PICC line in Karen’s right arm this time. Karen’s veins are small and they have not usually been able to do it in the right arm so we knew it was very likely that it would be difficult and that they might not be able to do it. As it was likely to be difficult the vascular access team wanted to do it in Interventional Radiology (IR) and we were told this would be under sedation. Karen knew this would be difficult for her, but she agreed to it. 

There have been several different dates arranged for the PICC line change that have gone wrong for various reasons which has been exhausting for Karen and stressful and worrying. At the end of July there was lots of talking about arrangements for the PICC line change and urinary catheter change. In the end Karen’s urinary catheter was changed on Friday the 1st of August. As usual it was changed by a urology consultant in Karen’s room. Later that day Karen started having a bad ME dip and on Saturday the 2nd she was vomiting.

For several reasons Karen decided to have the PICC line changed under general anaesthetic (GA). There was no GA list for this for quite a while. This meant Karen’s GA was put on the emergencies list so there was no guarantee it would be done on the day it was planned to be, because it depended on what emergencies the anaesthetist was needed to do GA’s for. Not having a fixed day and time was difficult for Karen. It was planned to try and get the PICC line changed on Monday the 11th of August. If it could not be done that day there were several other days with IR lists that week so Karen would be put on the emergencies GA list each of those days until it could be done. Fortunately, Karen’s GA was able to be done in the afternoon on Monday the 11th.

The IR consultant tried for an hour to put a PICC line in to Karen's right arm, but was unable to do it as the veins were too narrow. He had to resort to threading a guidewire through the old PICC line again on the left arm and then threading the new PICC line over the guidewire. This is the second time that Karen has had this done - it was also done this way last time. Karen was in a lot of pain in recovery but no one sorted out pain relief medication for her there or when she was back on the ward. Karen's right arm was badly bruised, swollen and painful and she also had pain in her left arm at first. She continued to get a lot of pain in her arm for more than 2 weeks after the procedure.

We all, and particularly Karen, found the heatwave in August very difficult. It is even more difficult in the room Karen is in now as the only ventilation is the window - the room Karen was moved from in May also had an air vent which helped.

Unfortunately, on Karen’s birthday on the 17th, she was more unwell than she is sometimes for several reasons including that it was very soon after the PICC line procedure and because of the overexertion caused by the problems with ESHT, the hot weather and the ME.

Heather got a virus towards the end of the week of the 11th. She had a very sore throat and a cough. The sore throat got worse. Then when she woke up on Tuesday morning the 19th, she was much more unwell. Her chest was rattling loudly and she was coughing a lot more, choking on phlegm in her throat and finding it difficult to breath. Karen was very worried and the nursing staff were also concerned. A while later, Heather phoned Michael and Karen spoke to him and told him he needed to come to be with Karen. A short time later a porter took Heather to A&E. Heather had a blood test, ECG and chest x-ray. Heather had got a throat infection. The doctor said she could go home. She was given a spray to keep her air ways open. Karen & Michael were worried about her going home as she would be on her own there.

On Monday the 18th Karen got a sore throat and a few days later it got worse and she also got a cough. She has been feeling a lot more unwell. Karen still has a chesty cough and is still trying to recover from the virus.

Michael stayed with Karen until Heather came back on Sunday the 24th. By then he had got a cough, sore throat and was feeling unwell.

Karen has hired a solicitor. Karen had to talk with the solicitor on the phone before he could take instructions. On Wednesday the 20th, Karen's solicitor sent a letter to Jayne Black, CEO of East Sussex Healthcare NHS Trust (ESHT) proposing a meeting with ESHT and proposing that an ME expert he knows of do an independent review of Karen.

We are all worried and stressed about ESHTs threats to take Karen to Court and to try to evict her from hospital without the TPN she needs to survive and the admin - ie thinking, talking, composing emails etc - caused by the Trusts’ threats is exhausting, especially for Karen.

For several weeks there was a particularly noisy patient in the room next to Karen. They often shouted loudly in their room and in the corridor near Karen’s room. They were shouting in the corridor for a long-time late afternoon on Karen’s birthday. On several days they also kept playing music very loudly and sometimes they were noisy at night. This was all very difficult for Karen.

In August Karen started getting pain inside her abdomen by her PEG-site and the PEG-site started oozing. The pain got worse. She has been started on a course of IV anti-biotics.

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