Hello Everyone
Karen has now been in Conquest hospital for more than 1 year and 4 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.
On the 7th of April, Jayne Black started as the new CEO of East Sussex Healthcare NHS Trust (ESHT)
On the 26th of March a Medical Adviser for the ME Association wrote a letter of support about Karen’s need for remote setting up of home PN to Steve Aumayer, then acting CEO of ESHT. In the letter the Medical Adviser backs Karen’s concerns about her travelling to and being at St Marks and asks for the decision not to give Karen remote setting up of home PN to be reconsidered and arrangements made for the home PN assessment to take place in Conquest Hospital, Hastings.
On the 9th of April Karen was sent a letter from Steve Aumayer, Deputy CEO of ESHT. He said he had chosen to reply to Karen instead of to the ME Association Medical Adviser. Steve Aumayer did not respond to what the ME expert said in his letter, the concerns he raised or his advice.
In Steve Aumayer’s letter, he said that Dr Simon Merritt Chief Medical Officer (CMO) at ESHT, has discussed Karen’s case with the Regional Medical Director. We were not aware that ESHT were contacting the Regional Medical Director. We do not know when this was or what was said. We were not given any opportunity to have input. We are asking ESHT for more information.
In Steve Aumayer’s letter, he also said that Dr Merritt has had conversations with 3 Tertiary Nutrition Centres – St Marks, UCLH and Portsmouth. Steve Aumayer said that they all said that they would not give Karen remote setting up of home PN. Again, we did not know that Dr Merritt was speaking to the Tertiary Centres, we do not know when it was or what was said and we were not given any opportunity to have input. We still think that a Tertiary Centre should give Karen remote setting up of home PN. The risks to the ME and the problems of Karen travelling to and being in a unit should not be ignored and a Tertiary centre should provide a suitable way for Karen to access home PN with her very severe ME.
On the 15th of April we sent a letter and 2 other documents by email to Jayne Black and others at ESHT and to UCLH. The letter was about some of our concerns about the second opinion from UCLH. The 2 other documents were some of our comments about what was in the meeting notes from 2 meetings at which they had discussed Karen’s referral. We had compiled the letter and the comments documents during March and April.
We have been told that ESHT might take Karen’s case to the Court of Protection or that ESHT might stop Karen’s TPN and send her home which would mean she would die of malnutrition and dehydration. Either of these would be appalling, inappropriate and unethical. Karen has justifiable reasons for being very concerned about travelling to and being at St Marks Intestinal Rehabilitation Unit (IRU) and for asking for remote setting up of home PN and these things are supported by ME Specialists and are in line with the NICE guidelines on ME.
Karen is still considering what was said in Steve Aumayer’s letter.
Karen has had and is continuing to have to use a lot of her energy and time having letters read to her, compiling letters and talking and thinking about what to do next. She is feeling very stressed, worried, exhausted, unwell and scared for her future. Michael and Heather are feeling very stressed, worried, tired and scared for Karen’s future too.
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