Hello Everyone
Karen has now been in Conquest hospital for more than 1 year and 5 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.
On the 9th of April Karen had been sent a letter from Steve Aumayer, Deputy CEO of East Sussex Healthcare NHS Trust (ESHT). He said that Dr Simon Merritt, Chief Medical Officer, had discussed Karen’s case with the Regional Medical Director and had conversations with 3 Tertiary Nutrition Centres - St Marks, UCLH and Portsmouth - about Karen’s case. We had not known that Dr Merritt was doing this, we do not know when this was or what was said and we were not given any opportunity to have input. On the 25th of April we sent a letter by email to Jayne Black CEO of ESHT, Steve Aumayer and Dr Merritt responding to the letter from Steve Aumayer. In our letter we asked for the Regional Medical Directors name and contact details and for information about ESHT’s communications with the Regional Medical Director and the 3 tertiary centres about Karen’s case.
Karen’s PEG-J site had been increasingly oozing and became red and painful. She had a PEG-J site infection. On the 29th of April Karen was started on IV antibiotics. Karen’s temperature had been spiking since Monday the 5th / Tuesday the 6th of May, so in the afternoon on Thursday the 8th the vascular team took blood cultures from the PICC line and peripherally (from her other arm) to check for sepsis. The results came back the following week that it was not sepsis. The PEG-J site slowly improved, The IV antibiotics were stopped on the 13th of May.
On the 15th of April we had sent a letter to Jayne Black and others at ESHT and UCLH about some of our concerns about the second opinion from UCLH for remote setting up of home PN with some of our comments about what was in the meeting notes from 2 meetings at which UCLH discussed Karen’s referral. On the 30th of April we received a letter by email from a consultant gastroenterologist at UCLH. He acknowledged errors in the referral process, including that the draft referral was sent to UCLH without Karen’s consent and knowledge, that a multi-disciplinary meeting on the 12th of November 2024 at which they discussed Karen’s referral proceeded without Karen’s knowledge and was based on incomplete and inaccurate information from the draft referral and that we were not informed until March 2025 that the referral had been considered in November 2024. But, UCLH continue to refuse to acknowledge that travelling to and being in St Marks would relapse Karen’s very severe ME, maybe permanently. In the letter they also still ignored many other problems of Karen travelling to and being in St Marks and Karen’s limitations of what she would be able to do at St Marks because of her very severe ME.
Karen and Heather had suspected that there may be a problem with the balloon inside Karen’s abdomen that keeps the PEG-J tube in. In the afternoon on Wednesday the 7th the PEG-J tube was sticking out more and Karen thought the balloon had burst. Her consultant checked it the next day and confirmed that the balloon had burst. The tube will need changing under GA somewhen. We are keeping it in with tape at the moment to keep the hole in her abdomen open.
For several weeks one the lumens on Karen’s PICC line had been very stiff and the nurses had been having difficulty getting blood from it. A nurse could not get blood from it on Friday the 2nd of May so on Saturday the 3rd the vascular team put a solution in it which helps break down blockages and clean the line. This helped a bit but the line was still stiff and when Karen’s nurse tried to get blood from it several days later, he could not do it. So, on Friday the 9th the vascular team put more of the solution in the line. This had similar results and the same problems kept re-occurring so more solution was put in on the 13th, 20th and 21st. Using it for 2 days in a row helped a lot more. Since then, there has been more problems with Karen’s PICC line and it is likely that it will need to be changed soon. More of the solution was put in on the 29th and 30th to try and keep the line working as well as possible for now.
A day or two after Heather had the heart attack Heather had a scan. They said the angioplasty had not worked as well as they had hoped it would. They were planning that Heather be discharged on Saturday the 10th but on Saturday they said they would keep her in for now and they would do another scan on Monday the 12th. During the night of Sunday the 11th Heather had a period of breathlessness. On several days she had periods of feeling very unwell. There was a back log of scans so there was a long wait and it was not done until Friday the 16th and then her discharge was delayed by several other things. In the evening on Monday the 19th Heather was discharged from hospital. Karen's brother was away in the New Forest so Heather stayed with a friend for 4 nights. After that, she has been at home.
On Wednesday the 14th we were told that Karen was going to be moved to another room that day, and she was moved that evening. On the 14th we sent an email to Jayne Black telling her that the room they were going to move Karen to was less suitable than the room she was in and asking that she speak with Karen about the room move with the advocacy worker for the 25% ME group joining on the phone before anything happened about moving Karen. On Thursday the 15th we received an email to Karen from Jayne Black. She stood by the decision to move Karen to the other room saying it was made with Karen's best interests in mind. She said she would meet with Karen after she returned from leave and that her Executive Assistant (EA) would contact us to arrange this.
There are many reasons why the room Karen has been moved to is less suitable for Karen with her very severe ME than the room she was moved from.
The room Karen is in now is smaller than the one she was in before which makes it more difficult to fit furniture in and things have to be moved around when staff bring in their equipment trollies which is more disturbance for Karen. It also harder to access one of the cupboards in the bedside locker.
Because of Karen’s light sensitivity the main light in Karen’s room is not used. In the room Karen was in before, when light was needed we had the light on in the bathroom with the bathroom door open and/or the over bed lamp was used. There is not a bathroom in the room Karen is in now. The over bed lamp was not working when we tried to turn it on a while after arriving in the room Karen was moved to. Later the charge nurse came and managed to get it working. The lamp was very bright and it has no dimmer option. The lamps are not usually so bright and some also have a dimmer option. The lamp in the room that Karen was in before was not as bright. The angle mechanism on the lamp was broken and the lamp pointed at Karen. The nurse managed to temporarily hook it around the IV stand to try and stop the lamp pointing at Karen. The nurse said it was the brightest lamp light. The nurse said they would contact maintenance and try to get a less bright light bulb and get the angle mechanism fixed.
Karen struggled with the lamp light being so bright and it was hurting her eyes a lot. Several times we followed up about maintenance coming regarding the lamp. Eventually, after more than a week, 2 maintenance workers came on Friday the 23rd. During 3 visits to Karen’s room that day they fixed the angle mechanism and changed the light bulb and tried to reduce the brightness. This has helped. They said the only other option is to fit a new lamp and that Karen would need to moved out for that - which would be very difficult for Karen with the ME and would make her more unwell. It was very bad for Karen’s ME having the problems with the lamp and having to have them fixed and it should have been done before Karen was moved into the room.
The room Karen has been moved to is next to the ward entrance / exit door - there is noise of people buzzing to be let into the ward and the door continually clicking when being opened and then loudly banging shut - including many times at night. Karen, like many other people with severe ME is sensitive to noise and the noise is also exhausting for her. The noise of the door disturbs her during her activity and rests or sleep.
There is frequent noise during the day from above of a toilet/s flushing and we also hear this noise intermittently during each night. The toilet flushing noise is also difficult for Karen because of noise sensitivity and because noise is exhausting for her.
In the room Karen was in before we also had ventilation from the window vent in the bathroom. There is less ventilation in the room Karen is in now. This means the room gets hotter and stuffy and smells and chemicals - such as if a nurse wears perfume - take longer to dissipate. Heat, lack of air, smells and chemicals make Karen feel worse. On our first night in this room the temperature in the room was 26.4c at 10.30pm.
The mobile phone reception/internet connection is weak in this room, particularly the phone reception. The phone line keeps breaking up or disconnecting and it takes a lot of Karen’s energy repeating things and having the phone repositioned and is very time consuming and frustrating. It is much worse than in the room Karen was in before. Karen cannot move from her bed to try and find an area with better reception and Michael finds it difficult to find an area in the room for him to talk. Karen needs to be able to talk to her mum on the phone while Heather is not at the hospital with Karen because she is recovering from her heart attack at home. When Heather is at the hospital, she and Karen need to talk to Michael about important admin regarding Karen's healthcare and dictate letters etc for Michael to type.
There are also other things that are more difficult for Karen in the room she is in now than the room she was moved from including other difficulties because of not having a bathroom in this room.
The room move affected Karen’s ME badly. Karen has been very unwell with the ME particularly during the first week and a half after the room move with more severe nausea and pain and increased exhaustion and was only able to do much less than usual and needed to sleep and rest. She has still been recovering and is also having to deal with the difficulties of being in the room she is in now.
Karen was not well enough to speak to Heather on Tuesday the 20th or for Michael to have the computer on and check the emails. In the afternoon on Wednesday the 21st, Michael checked emails and found one with a letter attached from Jayne Black which was dated the 19th and sent late afternoon on Tuesday the 20th. In the letter Jayne Black said the answers to our questions about the Regional Medical Director and the tertiary centres would not materially affect Karen’s care and she did not give us the answers to any of our questions. Jayne Black said the requirement for an inpatient assessment (at a tertiary centre) is irrespective of underlying diagnosis and that it is not any nutrition centres normal practice to commence home TPN outside of a specialist nutrition unit. She said that the only option for Karen to get home on TPN is for Karen to be transferred to St Marks hospital to undergo their process of assessment. We know it is not nutrition centres normal practice to commence home TPN outside of a specialist nutrition unit - we are asking for a tertiary nutrition centre to adjust their usual practices to make home PN accessible to Karen with her very severe ME. Patients should be able to access care that is suitable for their condition. Also, Karen being transferred to St Marks would make her less able to undergo their assessment process.
Things are more difficult because of Heather's heart attack and ESHT have made Karen more unwell moving her to the other room. They did not even given Karen time to recover before sending her the letter and it is so soon after Heather's heart attack to cause Heather more stress. It is disgraceful.
On Wednesday the 28th we sent a letter by email to Jayne Black pointing out that there is a recovery period for every patient who has had a heart attack and saying that Heather can be no exception to this. We also told her that Heather has been told by her cardiology team to avoid stress. We said that the content of Jayne Black’s letter was obviously going to cause us all a lot of stress and upset. We pointed out that the letter was written while Heather was still in hospital and was sent less than 2 weeks after Heather’s heart attack and said it was inappropriate to send it so soon after this. We asked that Jayne Black and ESHT be considerate and responsible and avoid putting stress and pressure on Karen and her parents particularly while Heather is recovering from her heart attack. We also said that we still do want and need the answers to our questions about the Regional Medical Director and the tertiary centres and asked that ESHT send us the answers. Patients do have rights to have their information relating to themselves and there should be transparency.
On Friday the 23rd we received an email from Jayne Black’s EA about arranging the meeting. It will be too much for Karen to have the meeting at the moment because of a number of reasons. On Wednesday the 28th we sent an email to the EA explaining that it is not a suitable time for Karen to have the meeting at the moment.
In the afternoon on Saturday the 24th Karen’s brother Steven brought Heather to visit Karen and Michael for a while. It was the first time we had been together since Heather’s heart attack on the 7th of May. It was lovely to be with Heather.
Karen is continuing to struggle with the noise of a nearby patient and the security guards and nursing staff dealing with the patient. It is very noisy for many hours at a time multiple times each day and is sometimes continual all day. The noise has got even worse since Karen was moved to this room.
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