Hello Everyone

Karen has now been in Conquest hospital for more than 1 year and 3 months. Karen is continuing to have TPN (IV feeding) and IV fluid in hospital.

Thank you all for your support since we posted about UCLH's decision not to give Karen remote setting up of home PN.

A few weeks ago, we found out that UCLH had considered Karen’s referral for remote setting up of home PN in November 2024. This means that the information reviewed at the meeting was the draft referral which was sent to UCLH without Karen's consent or knowledge. The UCLH meeting was on the 12th of November. Karen was not told that the referral had been sent until the 19th of November - 1 week after the referral was considered and the decision was made by UCLH. The draft referral had missing and incorrect information and was sent without the letter to UCLH from Karen and her parents. UCLH have said they have considered the amended referral and our letter on the 4th of February 2025. We are very unhappy that they had considered the draft referral and also, we are very unhappy about a number of other things about the second opinion. We did not find out until March that the draft referral had been considered in November.

A few weeks ago we were given the UCLH meeting notes document from the meeting held on 4/2/2025. UCLH said that in their opinion they felt the benefits of transfer to St Marks outweighed the potential risks, claiming that the risks can be managed by appropriate supervision during the transfer. To say that the risks of the transfer could be managed is wrong and a dangerous assumption. Even if the transfer was carefully planned, they would not be able to mitigate/manage the risks and the transfer would cause a serious/major relapse which may be permanent. By ignoring the risks to the ME of the transfer they seem to be trying to make it seem as if there are no risks. UCLH are also ignoring the problems and risks for the ME of Karen being at the unit. They are also ignoring other things.

UCLH say Karen’s case is complex and use this as a reason not to give her remote setting up of home PN. However, the complexities are due to the very severe ME and are the reasons why Karen needs remote setting up of home PN. Why use the complexities of Karen’s very severe ME as a reason not to give Karen remote setting up of home PN when the ME is the reason to give Karen remote setting up of home PN?

We have been told that if Karen does not give a decision about what to do next regarding St Marks soon, ESHT may take her case to the Court of Protection. This would be appalling and inappropriate. Karen has mental capacity, is intelligent and should not be subjected to Court proceedings. She 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. ESHT should be working with Karen and not against her. It would be very wrong if Karen’s case was taken to Court and it would cause her a lot of stress, distress and over-exertion and would be very bad for the ME. Karen is still considering about what to do next. We are all very concerned and stressed.

A medical advisor for the ME Association (MEA) has written a letter of support about Karen’s need for remote setting up of home PN to Steve Aumayer, Acting CEO of East Sussex Healthcare NHS Trust (ESHT). In the letter the medical advisor backs Karen’s concerns about her travelling to and being at St Marks and asked 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. The letter was sent to Steve Aumayer on Thursday the 27th of March.

As we have said before, we have been having problems with ESHT about the cleaning of Karen’s room. Karen needs a set time for the cleaning of her room for a number of reasons because of her very severe ME. At a meeting in 2023 with a Head of Nursing it was agreed that the cleaning of Karen’s room would be done at a set time. This was agreed again early in Karen’s current admission and it has been and is continuing to work well. In February and March 2025, the hospital Nursing managers were unhelpful about this and making it seem as if it is a problem for the hospital and have challenged it. At the meeting in February 2023 with the Head of Nursing it was also agreed that Karen would continue to aim to have her room cleaned once a day but that there are some days when Karen is not able to have the room cleaned such as, if she is particularly unwell. During the meeting the Head of Nursing said that sometimes other patients have days when they are unable to have their room/bed space cleaned and this was also acknowledged by another senior manager in February this year. However, in the horrible letter from Paul Smith, a Deputy Chief Nurse (CNO), in February 2025, they were ignoring these needs of Karen and the agreements. 

The advocacy worker for the 25% ME Group (for people affected by severe/very severe ME) has written a letter to Paul Smith, Deputy CNO. In the letter the advocacy worker said that Karen does need the room cleaning to be done at a set time and that because of the very severe ME there will be some days when Karen is not able to have the room cleaned. The advocacy worker said that the reasonable adjustments need to be made for Karen. The letter was sent on Tuesday the 11th of March. The advocacy worker and ourselves have not had a reply to the advocacy worker’s letter.

Karen has been and is having a very difficult time, particularly because of UCLH’s decision, the issues about the cleaning, ME dips and other medical things including urinary catheter/bladder problems and renal colic. She is also still trying to recover from having renal colic on Wednesday night, problems with the arrangements on Thursday and Friday for her urinary catheter change and the actual catheter change on Friday. There have been and still are a lot of discussions, talking and thinking about UCLH and St Marks and the issues about the room cleaning and we have been compiling responses. Having so many things to deal with has made it harder for Karen to respond about the main issue about what to do next. All this is causing her over-exertion and exhaustion and she is feeling pressurised about the time pressure regarding responding about UCLH and St Marks. We are all feeling very worried and stressed.

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