Hello Everyone,
On Thursday the 5th of July a urology consultant changed Karen’s urethral catheter. Unfortunately, Karen found it much more painful than usual. It was extremely painful. Afterwards the severe pain continued, Karen had bladder spasms, problems with drainage and blood in her urine. The severe problems continued for 4/5 days and then gradually improved. It meant she lost a lot of sleep as the pain frequently woke her up. It all had a bad effect on the ME.
On Friday the 12th of July, Karen’s local gastroenterology consultant came to see her. He said St Mark’s had given Tuesday the 23rd as the date for the call with them. Karen said she could not have the call then as she was due to have her menstrual period then. Karen’s consultant said St Marks knew about this but that they said it was the only date they could do at the moment because they would be going away on leave. St Marks schedules should not become Karen’s problem. Karen is more unwell during her menstrual periods and has previously had a permanent relapse following the over-exertion of a doctor’s visit during her period. She has been advised by an ME specialist to avoid over-exertion at this time. Because of these things Karen said again that she could not do the call on the 23rd of July.
On the 16th Karen was taken to radiology for abdominal x-rays which she has annually to check for kidney stones. This made Karen feel much more unwell and exhausted her. She was still trying to recover from this on Thursday the 18th.
At about 1:00pm on Thursday the 18th of July, a Head of Nursing at the hospital Karen is in - Conquest Hospital, East Sussex, came to Karen’s door and gave Heather a letter for Karen from Dr Simon Merritt Chief Medical Officer and Dr Vikki Carruth Chief Nursing Officer. The Head of Nursing referenced the call with St Marks - saying it was scheduled for the 23rd of July. No one had told us that the call was still planned for that date despite what Karen had said. Heather and Karen told her some reasons why it was not suitable then.
In the letter:
• They said St Marks have provided clear written answers to Karen’s queries. However, some of the answers to Karen’s 1st set of questions are not clear and we have not been given any answers from St Marks to Karen’s 2nd set of questions. We have repeatedly reminded them that this is the case and that we need the written answers. All of the questions are important to Karen and she needs clear written answers before she can make an informed decision.
• They said St Marks don’t provide a ‘remote discharge’ in which the patient is directly discharged home with home TPN. However, St Marks told us in the call we had in February with them that in exceptional circumstances they do remote discharge. Karen’s case is an exceptional circumstance. Karen has already been on TPN for many months in hospital and has tolerated it well and her blood results have been stable.
• They said almost 5 months have now passed since Karen’s initial meeting with the team at St Marks and that Karen has had several opportunities to ask questions of the St Marks team, which they have responded to, in order to ensure that Karen has all the information she needs to be able to make a decision. They said there appears to be a delay in Karen making the decision about whether to consent to transfer to St Marks. It’s unfair that the Trust are saying this as a lot of the delay has been caused by St Marks and any other delay has not been Karen’s fault. Karen put a lot of effort, energy and time into compiling the questions as quickly as possible. We sent Karen’s 1st set of questions to be submitted to St Marks within 2 weeks of the call with them. It was more than 3 months after we submitted them that St Marks sent their full responses to the 1st set of questions. We submitted Karen’s 2nd set of questions 7 weeks after the call with them. It’s been more than 3½ months since we submitted them and we have never had answers to them,
• They said that a virtual meeting has been set for Wednesday 23 of July with St Marks (the 23rd of July is a Tuesday not a Wednesday. We think they mean Tuesday 23rd of July). They said that the meeting will only be postponed in the event that St Marks cannot attend or that Karen is critically ill and that there can be no exceptions apart from these two circumstances. It is outrageous and unreasonable that they are saying that the meeting will not be postponed unless Karen is critically ill. There are many circumstances when people can be too unwell to have a meeting. This would not be enforceable in a working environment so why is it being forced on a hospital patient? It also could not be enforced for women in the work place during their menstrual period so why should a hospital patient be denied their women’s right? ME is a fluctuating condition and people with very severe ME cannot guarantee they will not have a flare up of symptoms that effects whether they can do things. It is well known that Karen has severe flare-ups. Karen currently has a PEG-J site infection – it is internal and external. It is causing her severe pain. She was started on I/V anti- biotics on Friday night. This is another reason why she should not be forced to have a meeting next week while she is currently more unwell than usual.
As we said in para. 2 of this update, Karen is more unwell during her period, has previously had a permanent relapse due to over exertion during her period and has been advised by an ME Specialist to avoid over exertion during her period. In Karen’s 1st set of questions we explained to St Marks about Karen’s periods and that she can only do less than her normal activity during them and asked if they agree to accept this. In their response St Marks said ‘Yes, this is fine.’ Yet they are still continuing to try and make Karen have the call during her period.
• They said that following the meeting Karen will have a 48-hour deadline to make her decision about whether to consent to go to St Marks. They said she will have until 4pm on the 25th July to make her final decision. Karen would suffer from Post Exertional Malaise (PEM) after the call. The 48-hour deadline after the call is unreasonable with someone with very severe ME such as Karen as it does not allow recovery time from the call before considering the information, making the decision and conveying the decision. It would also mean that Karen would be expected to make her decision during her period as well as having the call during it which would make her even more unwell and at even greater risk of relapse. The deadline is unacceptable. Regulations state that people should not be pressured or coerced into giving consent.
• They said that if Karen decides not to transfer to St Marks Hospital that there are no other options to manage her condition in hospital or at home or to assess for home TPN. They said this means Karen current TPN will be stopped, enteral feed will need to commence as tolerated and that they will arrange for discharge back to her home. It is appalling that they are saying they will stop Karen’s TPN and discharge her without it as she needs TPN to survive as she cannot tolerate enough PEG-J feed and water to sustain her.
• They said Karen’s local gastroenterology consultant who has been overseeing her care for the last 3 years is no longer meeting her clinical needs and that if any future care in hospital is required he will no longer be overseeing her care. This is strange, particularly as he is the Trust’s lead gastroenterology consultant and Karen’s care was transferred to him as he deals with complex cases. Why should Karen be denied his expertise and the continuity of care? We were told to work with him and we have been doing this. We disagree with the Trust’s decision. It seems as if Karen is being punished for the situation.
Karen’s PEG-J has malfunctioned and needs replacing. We discussed dates for it to be changed under GA recently and it was planned to be done on the next suitable date for Karen. This should be a priority and Karen could be recovering from the procedure while St Marks are unavailable for the call. Karen has not been able to use the PEG-J tube at all for more than a month because of the problem with the tube.
The letter from the Trust is appalling and horrible and lacks empathy and compassion. The Trust are continuing to ignore Karen’s very severe ME and the effects it has on her. The letter is causing Karen a huge amount of distress and stress and is making her feel pressured, more exhausted and more unwell.
Thank you so much to everyone who has signed and shared the petition. Also, thank you very much to those of you who have left supportive comments and/or chipped in to promote the petition. It is all much appreciated by us.
Please tell as many people as possible about East Sussex Healthcare NHS Trusts’ letter to Karen and what you think about it and share this post on-line.
Best wishes to you all.
Karen, Heather & Michael