Photo: Karen with a helium balloon that some friends sent her at Easter

Hello Everyone

Karen has now been in Conquest hospital in East Sussex for 2 years and 5 months.

Karen always finds the hot weather difficult and it makes her feel more unwell with the ME and more exhausted. She is finding the current heatwave very difficult and is struggling. On Monday the 25th the temperature reached more than 30 degrees in her hospital room.

Karen has still not fully recovered from the effects on her health from all that happened earlier this year when she had infections etc. Also, Karen is still having temperature spikes and sweating a lot.

Karen’s chronic anaemia has been becoming worse again. Her haemoglobin is low. The anaemia means Karen is even more exhausted than usual. Karen will need treatment again for the anaemia somewhen.

When Karen was not having TPN for some time in February and March because of her infections, her potassium and magnesium levels were too low several times so she had IV infusions of each of these several times. On Wednesday the 11th of March TPN had been restarted again. It was gradually increased without any problems this time. On Saturday the 21st of March the rate was increased to Karen’s normal rate and amount and she has been continuing to have this since then. It has been a relief that Karen has been having TPN again.

In the evening on Thursday the 19th of March, Karen developed severe pain in her left eye and a while later also on the left side of her face. She became very hot and very sweaty all over and later became cold and then hot again. She became increasingly unwell and became shaky. After about an hour from the start she started vomiting and she vomited 3 times. A few hours later she got severe pain in her jaw, particularly on the left side. This left severe eye, face & jaw pain is something Karen has not had like this before. It was frightening. The next afternoon the left eye, face & jaw pain was less and intermittent. She still felt more unwell than usual. She was having some pain in the left ear. Nearly a week before, Karen had finished a course of antibiotic eardrops for a bad ear infection in her left ear. We wanted her ear checked just in case it was linked to what happened above. A consultant came and examined Karen’s ear and felt the left side of her face. He said the ear was still a bit tight and swollen. He said Karen could re-start the ear drops at the weekend if the ear got worse. It did not. He said if Karen had any more episodes of facial pain that she would need a head CT scan. Fortunately, it has not re-occurred.

It had been arranged several weeks before that Karen’s urinary catheter would be changed on Wednesday the 1st of April. Late afternoon on Saturday the 28th of March we found out that the appointment had been changed to Monday the 30th because an error had been made with the booking of the original appointment. This was particularly unexpected because the afternoon before a consultant had confirmed the original date and time to us and Karen had received a hand-delivered letter dated the 27th also confirming it. The change of date caused a discussion with the doctor on Saturday which was tiring and stressful for Karen. The short notice was difficult for Karen with her very severe ME and meant that she didn’t have chance to rest as much as she would have normally done in the days just before the procedure.

As usual the urinary catheter was changed by a urology consultant in Karen’s room. Karen had a lot of problems with her catheter not draining properly afterwards, bladder spasms and severe pain. Karen usually does have bladder problems for several days after a catheter change but this time they were worse and they went on longer, probably because of the ME being worse. She had a lot of problems for several weeks and the first week was particularly bad.

A few days before Christmas, East Sussex Healthcare NHS Trusts’ (ESHT) solicitors sent a letter by email to Karen’s solicitor. In the next 2 weeks as well as worse times with the ME there was Christmas and plans were being made for Karen to have a Hickman line put in under GA on the 9th of January. So a lot of Karen’s energy was being used preparing for this such as on discussions with her consultant about plans for this and having patient information about Hickman lines read to her. On the 5th of January Karen became much more unwell with a severe infection (which also meant the Hickman line insertion had to be postponed indefinitely) and she remained very unwell with infections during the next few months and had to have four courses of IV antibiotics and two procedures under GA within a short timeframe. So for quite a while Karen was not able to deal with the letter.

On the 16th of January ESHTs’ solicitors emailed Karen’s solicitor asking him to confirm if he had taken instructions from Karen regarding their letter. Karen’s solicitor emailed them saying that he had recently been informed (by us) that Karen was very poorly with an infection. Only 11 days later on the 27th of January, ESHTs’ solicitors emailed Karen’s solicitor again asking about instructions from Karen. Karen could not possibly have recovered from being so ill and done the work for the instructions in such a short time. On the day they sent the email Karen had a CT scan and the consultant warned us that Karen's infection/s could be life threatening. Karen’s solicitor emailed them again and said that Karen remained too unwell with infections to give him instructions at the moment. On the 23rd of February ESHTs’ solicitors emailed Karen’s solicitor again. So Karen’s solicitor emailed them another update. Each time ESHTs’ solicitors ‘chased’ Karen’s solicitor it caused Karen and Heather and Michael more work as we had to update Karen’s solicitor. It also caused more stress and pressure, especially on Karen, which was particularly bad when she was so unwell.

In mid April Karen started to have the letter from ESHTs’ solicitors re-read to her and to make notes about it to discuss by email with her solicitor. On the 20th of April we received an email from Karen’s solicitor. He had received an email from ESHTs’ solicitors saying that they had been ‘told that Karen has improved and is now well’. They asked if Karen’s solicitor had taken updated instructions from Karen. Karen’s solicitor asked her for an update. We sent an email to him. He was ‘out of office’ for 2 weeks so was not replying to emails, but on the 28th ESHTs’ solicitors emailed him again asking for an update. When Karen’s solicitor was back at work, he sent an email to ESHTs’ solicitors updating them that Karen is working on her instructions to him about a response to their letter and saying that it was not accurate to say that Karen is well, that Karen continues to have very severe ME and is always suffering from that and the symptoms it causes and that Karen has not fully recovered from the effects on her health from all that happened when she had infections earlier this year. Karen continues to work on the response to ESHT. This continues to be stressful for us all and is exhausting for Karen.

Unfortunately, there have been several spells of very noisy patients in the side rooms near Karen again. There was a patient in the room nearly opposite who talked loudly almost continuously during the day and late into the night arguing with people who were not there.  After more than 1½ weeks they were moved to another room and a patient with security guards was moved into that room straight away. The patient was aggressive and violent during that night which was noisy. They were moved from the ward the next evening and another patient was put in the room. The next morning the patient was moved to another room and a very noisy patient with a security guard was moved to that room from a bay because the patient was disturbing other patients. They were particularly loud and continually shouting for long periods in the room and in the corridor near Karen’s room. They were so loud that they could be heard throughout the ward but it was much worse for Karen that it so was near her. They were moved from the ward that night. During the time of these patients there was also another patient in the other room near Karen who was noisy quite often and either they would be noisy when the patient in the other room was actually quiet for a while or they would both be noisy at once. More recently there was a patient in a room near Karen who had a security guard. The patient talked loudly in their doorway all day to their visitors or the guards. It is very difficult for Karen when there are noisy patients and it makes it harder for her to concentrate when she is doing things and she can’t rest properly in-between. It makes it more difficult for her to do the legal paperwork.

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.

Heather, Michael & Karen