Photo: 3rd May 2025: Karen in Conquest hospital with TPN.

Hello Everyone 

On the 15th of September it was 2 years since we started this petition. When we started the petition, Karen was at home suffering from malnutrition and dehydration, very thin and becoming thinner. This was because East Sussex Healthcare NHS Trust (ESHT) had stopped Karen’s TPN (IV feeding) and discharged her from hospital despite her not being able to tolerate enough PEG-J feed and water to sustain her and ESHT did not want to re-admit Karen to hospital and restart TPN and IV fluid. We feared for her life. Eventually, Karen was admitted to hospital because we instigated it as her PEG-J feeding tube was malfunctioning. Karen was taken to hospital on the 19th of December 2023. She was re-started on IV fluid and 2 days later she was re-started on TPN. These saved her life.

Karen was admitted to a 6-bed bay in Conquest hospital. Several days later she was moved to a side room. At the time we were told that this was because of her low white cell count - rather than because of her clinical need for a side room because of her very severe ME. Heather has been staying with Karen 24/7 throughout Karen’s admission.

ESHT say Karen has to go to St Marks Intestinal Rehabilitation Unit (IRU) for assessment and possible setting up home PN.

Karen has major fears and concerns about going to and being at St Marks. St Marks is 100 miles away. Travelling to and being at the unit would cause Karen serious harm. It would relapse the very severe ME making it much worse, maybe permanently and it could be life threatening. St Marks IRU has a strong psychiatric approach. We are all also very concerned about St Marks attitudes towards very severe ME and that they are not accepting all of Karen's needs and limitations she has because of her very severe ME. There are many other problems and risks for Karen because of the very severe ME, of her travelling to and being in St Marks including that she would not be able to do all the usual assessments. St Marks are reluctant to give Karen home PN even if she did go to the unit.

Karen needs home PN to be made accessible to her with her very severe ME. Karen has been asking for ESHT and St Marks to give her remote setting up of home PN while she is in Conquest hospital. Two ME experts have written letters of support for this and warned of the risks for Karen of travelling to and being in a unit.

Karen is continuing to have TPN and IV fluid in hospital.

However, on the 15th of July 2025 Karen was given a message from ESHT that ESHT might take Karen’s case to Court and that they were considering trying to evict Karen from hospital. This would be without TPN and IV fluid which would mean Karen would die of dehydration and malnutrition. Karen does not want to die.

Stopping Karen’s TPN would be a death sentence. She needs TPN to survive as she cannot tolerate enough PEG-J feed and water to sustain her.

It would be cruel and unethical if ESHT try to evict Karen from hospital. Karen should not be given a death sentence because of ESHT and St Marks disregarding the serious problems and risks that Karen has because of the very severe ME.

In August Karen hired s solicitor. He has written to ESHT.

ESHT and hospital senior nursing management have continued to show a lack of compassion and respect for Karen. 

We continue to call on Jayne Black CEO of ESHT, Dr Simon Merritt Chief Medical Officer, the other Directors of East Sussex Healthcare NHS Trust and the management of Conquest Hospital Hastings and Eastbourne District General Hospital:

1) To not stop Karen’s TPN and IV fluid.

2) To make special arrangements that are suitable for Karen to facilitate Karen to have home TPN and IV fluid without Karen having to go to St Marks Hospital and without all of the usual assessment processes, as she is unable to do them because of the very severe ME.

3) To accept that Karen needs her mother, Heather, her full- time carer and advocate, to be with her 24/7 while she is in hospital giving her one-to-one care and support throughout each admission.

4) To give Karen a side-room for the duration of each admission because of her very severe ME. 

5) To treat Karen with compassion and respect.

It is very helpful that so many people have signed the petition and that so many people have shared it, chipped in to promote the petition, left supportive comments for us and sent letters and emails to ESHT and others. You are showing East Sussex Healthcare NHS Trust your concern and outrage about how Karen is being failed by them and that they need to arrange to give Karen what she needs in ways that are suitable for her with her very severe ME. We are very grateful for everything you have done so far and are continuing to do.

We are heartened and very pleased that so many people have signed and shared our petition so far and chipped in. We have also been uplifted by all the supportive comments we have received. Near the end of July our petition reached 20,000 signatures! We were very pleased about this. Our petition has had an incredible amount of signatures so far – 20,550!

We have an X account. Our handle is @TeamKarenGordon: https://x.com/TeamKarenGordon . As well as our written posts and photos we have posted several videos of Karen talking about her situation. These were posted on the 8th of August 2024, the 15th of August 2024 & the 9th of March 2025.

Karen’s case has been featured in the media again a number of times in the last year, including in ‘The Times’ on-line on the 21st October 2024, ‘The Times’ newspaper on the 22nd of October 2024, on ‘The UK Tonight with Sarah-Jane Mee’ on the 9th of December 2024 on Sky News and ‘Greatest Hits Radio Sussex’ on the 29th of July 2025. You can view the piece from ‘The UK Tonight with Sarah-Jane Mee’ using this link: 
Sky News: The UK Tonight programme covers severe ME - The ME Association

ESHT & St Marks are continuing to cause Karen a lot of unnecessary stress and distress, fear, worry and over exertion. This is all having a bad effect on the ME and making Karen much more exhausted and more unwell.

Thank you to everyone for your wonderful support.

Please keep sharing this petition and telling people about Karen’s situation. We all need to keep fighting to get Karen what she needs.

Best wishes to you all
Karen, Heather & Michael