Hello Everyone

Karen has now been in Conquest hospital for more than 1 year and 2 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.

We do not have any news yet about the UCLH referral for remote setting up of home PN. UCLH need to adjust their usual practices and give Karen remote setting up of home PN so that Karen with her very severe ME can access home PN.

We have been having a particularly awful time as we are having more problems with East Sussex Healthcare NHS Trust (ESHT).

On Wednesday the 5th of February at around 9.15am a person from infection control (IPC) and a Deputy Chief Nursing officer (CNO) came to Karen’s room. They said they wanted to inspect the room and talk to Karen and Heather for ½ an hour - an hour. Karen was feeling more unwell that day because of an ME dip and feeling even worse as her anti-sickness and painkiller drugs were almost due. Heather and Karen told them these things and that Karen was not well enough to talk to them that day. They were dismissive and were putting pressure on Karen to talk that day. After a while they agreed not to talk then but insisted they would come back at mid-day.

Karen was upset and very tired and she felt even more unwell. When the ward consultant came on the ward round Heather explained about the situation. The consultant said he would speak to a nurse and ask them to phone and ask IPC not to come that day as Karen was too unwell. The nurse later told us that the matron had phoned IPC and told them about what the consultant said.

However, The Deputy CNO and IPC person did come at mid-day and saw Heather and Michael in the corridor. Heather had left the room to ask about Karen’s IV infusions that had finished and to ask for IV painkillers for Karen. The Deputy CNO and IPC person were insisting that the meeting go ahead without Karen. Heather and Michael tried to explain to them that Karen was too unwell to talk to them that day but that she wanted to be involved. They both ignored this and acted as if the room cleaning issue did not involve Karen. Although Karen may not have been at the whole meeting because of her energy, she wanted to be there for at least part of it. Also, a patient such as Karen with an advocate (Heather) needs time to communicate their thoughts to the advocate in advance. Heather and Michael declined to enter into discussions then as Karen wanted to wait until she felt less unwell and could be involved and because Heather and Michael did not want to agree to things without Karen’s knowledge or input. Heather and Michael said we needed a meeting to discuss things. Meanwhile, Karen was very distressed about what IPC and the Deputy CNO were saying, and because she was not involved, was feeling very sick and very close to vomiting, was in a lot of pain, both the IV machines were alarming and the noise was hurting her ears and needed turning so she was safer for if she vomited. Karen is sensitive to chemicals and smells. IPC brought some room cleaning wipes to show us with view to them being used for cleaning Karen’s room, but we had previously said they were not suitable to be used in Karen’s room due to the chemicals in them and the strong smell. We understood that a meeting would be planned with input from us about when would be the most suitable time for Karen.

Karen had been having some lower abdominal pain recently. On Friday the 7th the ward consultant diagnosed a urine infection. Karen was started on two types of antibiotics IV. On Tuesday the 11th Karen’s temperature spiked to 38.7c. Doctors decided that Karen needed a CT scan of her kidneys, ureters and bladder. That evening at 7:15pm during Karen’s evening sleep the fire alarm went off on the ward she is in and this immediately triggered a loud continuous noise from one of the air vents in the ceiling in her room. The noise from both woke her up. The noise from the vent continued throughout the night. Karen is sound sensitive so the noise caused her pain. It disrupted her sleep and rest and made her feel more unwell. It was very difficult for Karen. On Wednesday the 12th Karen was feeling much more unwell with an ME dip and was vomiting so Karen was not well enough to have the CT scan on the Wednesday or the Thursday.

On Thursday the 13th we arranged with a manager, for Karen’s room to be cleaned on Friday while she was out of the room for the CT scan. We agreed that we would contact the manager on the Friday as soon as we knew what time the scan would be. At 11.30am on Friday the 14th the ward sister told Heather that the scan would be at 2.30pm. Straight afterwards Heather saw the manager and a housekeeper standing in the corridor near Karen’s room. Heather told the manager that the CT scan had just been arranged for 2.30pm. The manager said about the room being cleaned ‘now’. Heather was surprised because of Thursday’s agreement and said that having the room cleaned prior to the CT scan could make Karen too unwell to have the CT scan. The manager said she would document in the notes that we were saying no to the room cleaning. Karen was upset and distressed.

Very shortly after, the Deputy CNO who had come to the room on the 5th, came to Karen’s room. He gave Heather 2 copies of a letter to ‘Mr & Mrs Gordon’ from himself, Paul Smith, in envelopes - one to Mrs Gordon and one to Mr Gordon. Karen is angry and upset that the letter was not written to herself / herself and her parents. Karen is the patient and the cleaning of Karen’s room affects her. Karen felt as though she was being treated like a child. While in the room, Paul Smith was repeatedly saying that we do not allow the staff in to clean. Heather and Karen told him that we do allow people in to clean the room, but he refused to believe them. He said he is believing the staff. Karen and Heather were stressed and distressed by what he was saying and his attitude. He was inferring they were liars.

Paul Smith said they planned to move Karen to another room on the 18th while her room was ‘deep cleaned’. Heather and Karen explained that it would not be suitable to do the ‘deep clean’ on the 18th as it would be during Karen’s menstrual period. Karen feels much more unwell during her periods and has been advised by an ME specialist to avoid over exertion at these times. There is a higher risk of relapsing the ME during her period if over exerted. For someone like Karen with very severe ME being moved on her bed is a big exertion. Paul Smith was dismissive about these things and he said it was literally moving the bed across the corridor.

For people with very severe ME such as Karen, even someone moving around the room they are in is very difficult and increases their symptoms, so things such as room cleaning are very hard for them. It has been a long-standing arrangement that the cleaning of Karen’s room has been at 11am as this is the best time for her and fits in with her medication and sleep. On the majority of days a housekeeper has come, the room has been cleaned. On the days that Karen is too unwell for the room to be cleaned and some of the occasions when her consultant comes she is unable to have the room cleaned. It was agreed by managers at Eastbourne DGH 2 years ago that on these days the room would not be cleaned.

There had been a build up dust in some areas of Karen’s room due to the poor standard of cleaning when the room was cleaned and because some days the housekeepers ignored Karen’s room and did not even ask about cleaning it. We had talked about the cleaning issues with the ward matron last year, but nothing had changed.

We were horrified about what was said in the letter. Most of the letter was about the cleaning of Karen’s room. It said we were not allowing access to the room for cleaning and blamed us for the room being dusty. The letter also had negative inferences about other things. We strongly refute the negative things that have been written to and said about us and the negative inferences. They are deeply offensive to all of us and very unhelpful. They are not a true depiction of how things are. We should not be blamed or used as scape goats.

The things that had happened on the day of the scan made having the scan much harder for Karen. The CT scan showed 2 small stones in Karen’s left kidney. A urology doctor said they do not need treating at the moment. Karen had 10 days of both IV antibiotics for the urine infection.

We sent two letters by email to Steve Aumayer Acting CEO and others on the 17th and 25th of February explaining what has actually been happening about the cleaning, responding to some of the things that were said verbally and in the Trust’s letter and commenting about the heavy-handed way that ESHT have been dealing with us in the last few weeks. In our letter on the 17th, we asked for the ‘deep clean’ to be postponed for at least several days because of it being Karen’s period and because she was also more unwell and exhausted and in more pain because of Paul Smith’s visit and letter, the CT scan, urine infection and helping compile an urgent letter to ESHT with Heather and Michael and all this made it a very bad time to have the ‘deep clean’ of her room. We received a brief acknowledgement of receipt from Steve Aumayer to our first letter, but the Trust have not responded to what we said in our letters. 

The ‘deep clean’ arrangements and day were badly handled. In our letter on the 17th, we had asked for someone to liaise with about the arrangements for the ‘deep clean’ day, but ESHT ignored this. So it was even more stressful as we did not even know things such as if Karen would be moved at the most suitable time for her or whether they would expect to move her before her anti-sickness and painkiller medications had been given or during her sleep time which would have been very unsuitable for Karen. On the 18th Karen was moved to another room while the ‘deep clean’ took place. 2 rooms had become available at the same time but they chose to move Karen to the one which was less suitable for her as it has no windows or ventilation, so becomes hot. This problem is worse for Karen because we have to keep the door shut because of the light, noise, chemicals and smells from the corridor. Karen is sensitive to heat and it makes her feel more unwell. We had explained these things to the Trust in advance of the day. Karen’s pain, nausea and other symptoms were increased due to the over exertion and Karen’s anti-sickness and pain killer medications were given much later than due during the day, which made Karen feel even worse. She was in severe pain and close to vomiting. Karen was left much longer in the hot and stuffy room than she should have been, and having to wait for her bed to be moved also meant she was deprived of her evening sleep which she very much needed. Karen vomited that night.

ESHT said a new product would now be used to clean Karen’s room. Although the product may be suitable for some people, when it was used Karen found it was not suitable for her. She could smell it and it made some of her symptoms worse. Some managers were putting a lot of pressure on Karen to have the new product used in her room and kept claiming that it didn’t smell. We have asked that a liquid detergent that was used in Eastbourne hospital to clean the floor in Karen’s room when she was there to be used instead. 

The way that things have been handled by ESHT in the last few weeks has caused us all a lot of stress, distress, worry and upset and have caused Karen over exertion and had a detrimental effect on her very severe ME. She is exhausted. ESHT keep ignoring the NICE guidelines on ME such as about energy management etc and are continuing to cause Karen a lot of unnecessary stress and suffering. ESHT have been negative, critical and heavy handed. We are just normal people in a very stressful and difficult situation doing the best we can. The way ESHT talk and write about us gives a totally false impression of us. 

We are all very worried about what the outcome of the UCLH referral will be. We desperately need UCLH to help Karen by agreeing to give her remote setting up of home PN.

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