Hello Everyone
Karen has now been in Conquest hospital for more than 1 year and 4 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.
Michael is continuing to stay with Karen in hospital 24/7 while Heather recovers from the heart attack she had on Wednesday the 7th of May. Heather is still in Eastbourne hospital.
A nearby patient has a security guard 24/7. The patient was moved from a bay 2 weeks ago because their behaviour was upsetting the patients so much, invading privacy and disrupting staff who were also complaining. We have had several issues relating to the patient about noise and Karen’s privacy that we have had to raise. The problems were particularly bad over the weekend of the 3rd and 4th of May, the bank holiday Monday and some of Tuesday the 6th and this could have been avoided. This affected Karen’s ME, increasing her symptoms and making her feel more unwell and causing her distress. On Tuesday the 6th, one of the days we raised the issues, someone asked Karen & Heather if moving Karen to the side-room next to the one Karen was in would help. But they said no, that it is smaller and is not a suitable room for Karen. We knew moving to that room would not help with the noise and privacy anyway as it is also near the patient's room.
Despite Heather having just had a heart attack, the senior nursing management at East Sussex Healthcare NHS Trust (ESHT) have unnecessarily made issues which is making things even more difficult for Karen and all of us and increasing our stress and worry and making Karen more unwell. They have stooped to a new low.
Early afternoon on Friday the 9th of May when Michael was at the nurses desk asking Karen's nurse for that day to bring Karen pain killer with her anti-emetic and asking them to come and speak to Karen about her IV's somewhen, the ward matron who had been nearby followed Michael. In the corridor she asked how Heather was doing. Michael said that we don’t know much, that Heather had angioplasty and was resting and is still in hospital. Matron said that they can't do anything about the nearby patient in the room near Karen except move Karen to the room next to the one Karen was in. Michael said to matron that moving Karen to that room is not an option, that it is not a suitable room and also has no bathroom for Heather. Matron replied that Paul Smith (a Deputy Chief of Nursing) was not happy with Karen and Heather being in a room with a bathroom, that the bathroom was not being used by the patient, that it was for the patient and Heather is not the patient and that the longer-term option is to move Karen and Heather to the room next to the one Karen is in. Michael said he couldn't believe he was having this conversation on top of everything else that was going on. Matron said it was a difficult conversation but something we will have to talk about somewhen. She then went on to say that they need to do a deep clean of Karen's room. Michael said why as we have only just had the room cleaned this morning. She said there was an occasion last week when the cleaner said that we had said no to the cleaner about moving Heather's bed to clean under it. Michael said I don't know about that. During all this Michael kept saying he couldn't believe he was having this conversation.
What matron was referring to happened with a new housekeeper. Heather asked her to clean under her bed with the mop. The housekeeper said about moving the bed. Heather said no, they push the mop head under the bed to clean without moving the bed. The housekeeper then used the mop under the bed. The housekeeper was pleasant.
After speaking to matron, Michael relayed the conversation to Karen. We were both very stressed and then Karen started crying and had a panic attack, hyperventilating and shaking. After a while her nurse came in and witnessed Karen during her panic attack. She was too upset and hyperventilating too much to talk to him.
Karen's room is being cleaned regularly and did not need deep cleaning. We knew it would be far too much for Karen to be moved for this again, especially at the moment. Even if they did move Karen too deep clean it they could have moved Karen back into it after it was aired.
We knew there were many reasons why the room next to the one Karen was in would be unsuitable and why we need the bathroom. One reason why the other room is unsuitable for Karen is that it is smaller than the room Karen was in which is only just big enough. Although Karen cannot physically go into the bathroom, there are reasons why she needs it as well as Heather.
The hospital management should not be making issues and it is particularly appalling that they raised them so soon after Heathers heart attack. One day Karen’s blood pressure was 189/118.
We could not even tell Heather about what matron said because we were worried about how the stress would affect her. We did not know when we would be able to tell her and we were worried about how it would affect her. Obviously, someone who has had a heart attack should not be caused extra stress.
On top of the on-going situation and Heather's heart attack, Karen also has been/is having to cope with other things including, the nearby patient, a PEG-J site infection, being on IV anti-biotics, problems with the PICC line and the PEG-J tube being broken and needing changing somewhen. These things made it even more inappropriate of management to add any more things for Karen to deal with.
Karen had been more unwell with the ME since Heather had her heart attack because of all the overexertion and stress. She felt a lot worse later in the afternoon on Friday the 9th and during Saturday and vomited on Saturday. She was still trying to recover from this on Wednesday the 14th.
We were very stressed and worried about what matron said and what would happen. We talked to a doctor about some of our concerns but with everything that was going on with Heather, Michael being with Karen all the time and Karen being more unwell, we were not able to convey all the problems of Karen being moved to another room or write to the Trust about the problems. We were not given time to do this before the next thing happened.
At about 11.20am on Wednesday the 14th of May, Paul Smith a Deputy Chief Nurse, came into the side room Karen was in. He said that they were moving Karen that day to the room next to the one she was in. We tried to talk to him but he was abrupt, rude, condescending and dismissive about everything we said. We said we needed to discuss the problems about moving Karen to the other room. He said we do not need to discuss it, that it was the hospitals decision and nothing to do with the patient. He said it had been discussed at the highest level. He said he only has concerns for 2 things - infection control and patient safety. Karen said what about carers. He said they aren’t in the NICE guidelines. We said moving Karen would make her ME worse. He was also dismissive about this and said it was only moving her to the room next door and could not make her ME worse. He clearly seems to have no belief or concept of how exertion can badly effect people with very severe ME. He also seemed completely uninterested about causing us all more stress and Karen more overexertion so soon after Heather’s heart attack and that the ME is already worse. Karen said she wanted to speak to the CEO about the room move. He said that she could not just demand that the CEO comes. Karen said they were saying that they were going to move her that day so it wasn’t her fault that she wanted to speak to the CEO soon. We said the other room is smaller. We said there needs to be space for the furniture to fit and space to access each side of Karen’s bed to give Karen care. Karen asked that someone measure the other room to see if things would fit in. He said no, patients couldn’t just tell them to do that and that the room was the same size. While Karen was talking to him he left the room.
We were very stressed during and after this visit. Karen became extremely distressed afterwards and was crying. We spoke to a ward doctor and ward sister about some of the problems. Karen was in tears during this.
We had to tell Heather about Paul Smith’s visit and the room move. Obviously, she was very worried and stressed about how it was all affecting Karen and Karen’s ME and about the other practical problems of the other room.
In the afternoon Karen’s blood pressure was 173/82, her pulse was 115 and her temperature was 37.9 a while after having paracetamol which reduces temperatures. A course of IV antibiotics had been ended the day before and the doctors wanted to keep an eye on the observations in case there was still infection but we could not tell how much of the observations was due to overexertion and stress or due to infection.
The Deputy Chief Nurse and some others are so cold and callous and reckless with Karen's ME and all of our general wellbeing.
We contacted the advocacy worker for the 25% ME Group. She offered to speak to Paul Smith on the phone that afternoon. We asked to speak to someone to pass on messages and the advocacy workers contact details to Jayne Black CEO of ESHT and Paul Smith, but there was a long delay in the person coming.
We emailed Jayne Black CEO and asked that she speak with Karen about the room move with the advocacy worker joining on the phone before anything happened about moving Karen.
We also contacted an ME expert who wrote a letter to Jayne Black CEO which he sent by email that afternoon. The letter was about some of his concerns about Karen being moved to the other room and that it was breaking the NICE guidelines on ME.
Karen usually has a protected sleep from 6.30pm - 9.30pm. Things were running a bit late but Karen was almost ready to settle down at 6.45pm but then Paul Smith came into the room and said that they were going to move Karen to the other room now. Karen said it was supposed to be her sleep time. He said they would move her before it. Karen said but it’s already past her sleep time starting. We tried to talk a bit more about the problems but he was dismissive again. We said that Karen wanted to speak to the CEO. He said the CEO had passed it over to him. He said it was not an issue for the CEO it was a nursing issue. We said the CEO’s role covers all aspects of the Trust. We asked if he had got our message about him speaking to the advocacy worker. He had. We asked if he had spoken to her. He said no, that he wasn’t going to and that it was nothing to do with her.
Straight after this 6 nursing staff came into the room and started taking things out and putting them in the other room. They did not want us to keep the same bed side locker so Michael had to hurriedly move everything from the locker into another locker. Karen wanted them after moving the little bed Heather (currently Michael) uses, to check that the furniture would fit before they moved her, but they said the room was the same size and things would fit. When they moved Karen, they realised there was less space and there were problems fitting the furniture in. Karen was very upset and stressed about the problems due to the lack of space and was in tears again. Moving the things into the room did not finish until at least 7.45pm so took a lot of Karen’s ‘protected’ sleep time and she did not manage to sleep after that.
All the overexertion and stress regarding the room move has increased Karen’s pain, nausea and exhaustion and made her feel more unwell and all the stress is bad for Heather.
It is ironic that the Trust’s actions above were during ME Awareness Week (8th – 14th May 2025) and that the theme this year was the plight of people with severe/very severe ME who have been hospitalised.
There are problems with Karen being in the different side room which are very difficult and are affecting Karen’s ME. We will explain more another time.
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 & Michael