Hello Everyone,

On the 24th of May we sent a letter by email to St Marks hospitals Intestinal Rehabilitation Unit saying that they had not answered Karen’s 2nd set of questions and that there were a lot of questions in Karen’s 1st set of questions they had not answered. We asked them to send us the answers to all the unanswered questions.

There are also some questions for the units psychiatrist which have not been answered.

On the 31st of May we were told that St Marks feel that they have answered all of Karen’s written questions and that St Marks want to have a video call with us. But St Marks have not answered all the questions and Karen still wants and needs written answers to all of them.

Karen wants and needs written answers so that the answers are clear; so she can have them read to her in the best way for the ME, a bit at a time and at the best times for her and have parts re-read to her as necessary; so she can consider St Marks answers/responses before the call with St Marks, to prepare her replies and for Karen to prepare Heather as her advocate and spokesperson to help her communicate her views and any further questions that arise regarding their responses.

In the Health & Social Care Act 2008 Regulations 2014 it says, ‘Discussions about consent must be held in a way that meets people’s communication needs. This may include the use of different formats (…).’

On the 3rd of June we sent another letter by email to St Marks explaining why Karen needed written answers and why she needed them before the call. On the 5th of June we received a document from St Marks with a lot of answers to Karen’s 1st set of questions. It is a different document to their first response and is substantially different. It will take many sessions for Karen to have it read to her a bit at a time and many more sessions for Karen to consider the information and prepare her response.

On the 6th of June we were told that St Marks would be available for a call on the 14th. If we have the call then, there would not be enough time for Karen to prepare her responses to the 5/6/24 answers as there would be only a week between receiving them and the date of the proposed call. There might be things Karen would want to discuss from St Marks responses but hasn’t been able to prepare for this before the call if it is on the 14th.

We would not be able to cover the unanswered questions from Karen’s 2nd set of questions during the call. Karen would not have time and enough energy during the call to consider and respond to all the answers and Heather cannot respond to St Marks answers without having first discussed them with Karen.

Karen would still want and need answers to any of her questions that have not been sufficiently answered and chance to respond before making an informed decision. All of the questions are important to Karen and she needs all the answers to make an informed decision.

Karen is exhausted and is feeling stressed and pressurised because of trying to have St Marks response read to her and prepare a response in the short time frame.

We feel that the proposed call on the 14th of June should be postponed for all the reasons above.

On the 5th of June St Marks asked us if the 2nd set of questions had been sent to them. The 2nd set of questions were sent to them on the 4th of April. At the end of May we were told that St Marks had said they had received them. It’s really strange that they are asking if they have been sent them.

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 continue to tell people about this petition and continue to share it on-line.

Best wishes to you all.
Karen, Heather & Michael