Hello Everyone,
It’s been 1 year since we started this petition. We have been calling on Joe Chadwick-Bell the CEO and Directors of East Sussex Healthcare NHS Trust (ESHT) and the management of Conquest Hospital Hastings and Eastbourne District General Hospital:
1) To make arrangements that are suitable for Karen – including 3 and 4 below – to start TPN and I/V fluid without delay. We expect this would initially be at Conquest Hospital and then for them to continue at home.
2) To make special arrangements that are suitable for Karen to facilitate Karen to have home TPN and I/V fluid without Karen having to go to St Mark’s 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.
The CEO and Directors of East Sussex Healthcare NHS Trust and the management of Conquest Hospital Hastings and Eastbourne District General Hospital have not met points 1, 2, 4 and 5.
After many months of malnutrition, dehydration, weight loss and becoming thinner and thinner Karen was eventually admitted to Conquest hospital on the 20th of December 2023. However, this was not because the Trust Board and hospital senior nursing management had arranged to admit Karen for TPN (I/V feeding) & I/V fluid as they should have done to save her life. Karen was admitted because we instigated it, as her PEG-J tube was malfunctioning. On the 19th of December 2023 we called 111 and Karen was taken by ambulance to A&E at Eastbourne District General Hospital. In A&E, Karen was started on I/V fluid.
The next afternoon Karen was transferred to Conquest hospital and admitted to a 6-bed bay there. 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.
On the 21st of December TPN was started. Karen has been continuing to receive TPN and I/V fluid since then.
HOWEVER, ESHT HAVE THREATENED KAREN AND ARE SAYING THAT THEY WILL STOP KAREN’S TPN AND DISCHARGE HER IF KAREN DOES NOT AGREE SOON TO GO TO THE INTESTINAL REHABILITATION UNIT (IRU) AT ST MARKS HOSPITAL.
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.
Karen has major fears and concerns about going to 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 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 because of her very severe ME. St Marks are reluctant to give Karen home PN even if she did go to the unit.
Karen still needs home PN to be made accessible to her with her very severe ME. We continue to call on ESHT and St Marks hospital for Karen to be given remote setting up of home PN while she is in Conquest hospital.
ESHT and hospital senior nursing management are continuing to show a lack of compassion and respect for Karen. One example of this is the ‘Bombshell’ letter to Karen from Dr Merritt Chief Medical Officer (CMO) and Dr Carruth Chief Nursing Officer (CNO) of ESHT in July, which had threats, ultimatums and a 48-hour deadline. You can read more about the letter in our petition update ‘Bombshell letter to Karen with ultimatums & deadlines from East Sussex Healthcare NHS Trust’ which we posted on the 21st of July. Scroll down the front page of our petition to find it in ‘UPDATES.’ The letter was cold and callous and has caused Karen extreme and unnecessary stress, distress, worry, fear and over exertion and made her feel pressurised, more exhausted and more unwell.
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 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 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. Our petition has had an incredible amount of signatures so far - 17,925!
ITV Meridian News featured Karen’s case on Monday the 22nd of July 2024. The news item featured part of a video of Karen. You can view the part of the video of Karen that they used and a clip of Heather talking they used by clicking on this link. https://www.itv.com/news/meridian/2024-07-22/i-feel-scared-and-desperate-woman-with-me-uncertain-about-future-treatment
In August 2024 we started an X account: https://x.com/TeamKarenGordon On the 6th of August we posted the full video on X which ITV Meridian News had shown part of. The 2nd video of Karen talking about her situation, that we posted on the 15th of August has had more than 62,000 views.
ESHT 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.
We are still calling on Joe Chadwick-Bell the CEO, Dr Simon Merritt CMO, Dr Vikki Carruth CNO and the other Directors of East Sussex Healthcare NHS Trust and the management of Conquest Hospital Hastings and Eastbourne District General Hospital to meet points 2, 4 and 5.
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