Hello Everyone

A while ago Dr Gabe, consultant at the Intestinal Rehabilitation Unit (IRU) at St Marks hospital, suggested that Karen gets a second opinion from University College London Hospital (UCLH) about whether they would agree to give Karen remote setting up of home PN. We feel that Dr Gabe has suggested the second opinion to try to get back up for his decision rather than to help Karen get home PN.

After considering the option for a second opinion and discussing it with Karen’s gastro enterology consultant at Conquest hospital, Karen agreed to be referred to UCLH as long as certain things were done before the referral was sent to UCLH. It was agreed that the referral would not be sent to UCLH until Karen had agreed for it to be sent, that Karen would be sent the draft referral, that Karen could have it read to her a bit at a time, that we could liaise with one of the registrars, that it would not be sent until any adjustments that had been agreed between Karen and her treating clinicians after it being read to her had been made, and that Karen and Heather and Michael would write a letter which would be sent with the referral.

On Tuesday the 5th of November we were given the draft referral. Unfortunately, Karen was particularly unwell that day with a bad ME dip and she had vomited seven times earlier that day. She was not well enough to start having the draft referral read to her that day or the next day and was still more unwell than usual when she started having it read to her on Thursday the 7th. Karen has continued to have the draft referral read to her a bit at a time and has also been composing the letter to accompany the referral with Heather and Michael. These things have been delayed at times because of things such as another ME dip with vomiting and several separate days where her other gastro intestinal symptoms have been worse.

Karen’s gastro enterology consultant at Conquest is currently abroad for personal reasons and will be away for a number of weeks.

Earlier today, Tuesday the 19th, a gastro consultant and a gastro senior registrar came to see Karen. Karen’s menstrual period started last night so she is feeling more unwell than usual and she should be having less exertion than usual. The registrar said the second opinion referral has been sent to UCLH following a professionals meeting with Trust Directors etc. This was against previous agreements. The agreed things have not been done so the referral is incomplete and does not have all the information UCLH needs and not all the information is correct. Karen has not been given enough time to comment on the draft referral and to finish the letter that she wanted to send to UCLH with the referral.

Karen and Heather were shocked and horrified that the referral has been sent to UCLH without Karen’s knowledge or consent. They talked to the registrar. During the conversation, Karen got very severe leg pain because of the ME. While they were talking the registrar said that she would contact East Sussex Healthcare NHS Trust (ESHT) about what Karen had said about the referral.

Karen is asking for the referral to be put on hold until the things that were previously agreed have been done. 

We are very worried and frightened that the referral will be considered without the necessary adjustments and the letter from Karen and Heather & Michael. UCLH have referral meetings each Tuesday - so if the referral is not put on hold it is likely to be considered very soon without Karen's consent at this point, with some incorrect information and with information missing. We are very frightened that we will get another ultimatum from ESHT and that they will stop Karen's I/V feeding (TPN).

Yet again, East Sussex Healthcare NHS Trust are ignoring Karen’s very severe ME as well as her wishes. They are causing a lot of unnecessary stress and exhaustion for Karen and their actions are counter-productive.

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