Karen's father, Michael Gordon, has left a disheartening update on a petition page, explaining the response to a letter written by Dr Charles Shepherd, Hon. Medical Advisor to the MEA that was sent to the Deputy CEO of East Sussex Healthcare Trust (ESHT).
Update by Michael Gordon, Karen's Father
Summary of the petition update
- Karen Gordon is still in hospital, 1 year and 4 months later, which is causing her a great deal of stress and exacerbating her already severe ME symptoms.
- On 26th March, Dr Charles Shepherd, Honorary Medical Advisor to the ME Association, wrote to ESHT to support a request for Karen to receive TPN at home given the severe nature of her ME/CFS.
- On 9th April, Karen and her family received a letter from the the Deputy CEO of ESHT in response to to a letter written by Dr Shepherd. It said that the Chief Medical Officer at ESHT had spoken to the Regional Medical Director about Karen's case although the family were not consulted for input.
Petition update from the family
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 an 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 the Deputy CEO of ESHT. He said he had chosen to reply to Karen instead of to the ME Association Medical Adviser. He did not respond to what the ME expert said in his letter, the concerns he raised or his advice.
In the 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.
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 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.
Further Information
The ME Association: Karen Gordon: Update on UCLH decision to not provide home based IV feeding | March, 2025