Hello Everyone,
Thank you so much to everyone for your support. Thank you to everyone who has signed and shared the petition. Also, thank you very much to everyone who has chipped in to promote the petition. Thank you for your supportive comments. It is all much appreciated by us.
On Monday the 22nd of July we sent a letter by email to Dr Simon Merritt Chief Medical Officer & Dr Vikki Carruth Chief Nursing Officer at East Sussex Healthcare NHS Trust (ESHT) responding to their letter to Karen on the 18th of July. An ME Specialist also sent them a letter advising that Karen should not have the call with St Marks on Tuesday the 23rd and saying that the 48-hour deadline after the call to give her decision was ‘unreasonable’. The ME Specialist urged them to reconsider their decision to remove Karen’s local gastroenterology consultant from her future care and said the decision ‘seems unjustified and almost punitive.’ He also expressed concern regarding the Trust’s mention of stopping Karen's TPN (I/V feeding), saying it, ‘would obviously cause her harm and indeed be life-threatening.’ We also sent a letter to St Marks and sent them copies of our letter and the ME Specialist’s letter to the CMO & CNO.
Late afternoon on Monday the 22nd, we were told that St Marks were postponing Tuesday the 23rd’s call with Karen due to 'technical problems'. It was a temporary relief but damage had already been done to Karen.
Among our many, many concerns are about the setting of the next call date and the 48-hour deadline after it. We are worried that St Marks & ESHT will set the next call for a date that is unsuitable for Karen - again. The call date needs to be discussed and mutually agreed with Karen before it is set. EHST stated in their letter to Karen last week that if the meeting (call) was postponed then there would be a new 48-hour deadline from the new meeting date for Karen to give the Trust her decision. This is totally unreasonable. We have given many of the reasons why it is unsuitable for Karen in our letter to ESHT on Monday the 22nd.
On Monday the 22nd, Karen’s case was the first item featured on the ITV Meridian News at 6pm. It was good to have this publicity about Karen’s case. It featured part of a video that we had filmed of Karen on the 21st. In the extract that they used Karen said, ‘Imagine how you would feel if through no fault of your own you might soon be deprived of food and water and be left to die of malnutrition and dehydration. I feel scared and desperate.’
https://www.itv.com/news/meridian/2024-07-22/i-feel-scared-and-desperate-woman-with-me-uncertain-about-future-treatment
We have been following the sad case of Maeve Boothby-O’Neill’s inquest. We send our condolences to Maeve’s family and friends. We are appalled at how Maeve was treated by some staff at the Royal Devon & Exeter Hospital. The bad attitude and lack of appropriate care and nutrition are disgusting and inexcusable.
Maeve’s case has chilling similarities to Karen’s case.
In ESHT’s statement to ITV Meridian they said ‘should Karen and her family choose not to take up the option of the referral to St Marks we will ensure that Karen is discharged home safely with an alternate programme of treatment that will allow her to be cared for in her own home.’
However, it would not be safe for Karen to be discharged without TPN. Since 2021 Karen has been discharged 3 times without TPN and each time suffered malnutrition, dehydration and severe weight loss. For the last 2 years Karen has had a PEG-J tube. She has never been able to tolerate enough PEG-J feed or water to sustain her because of her severe gastrointestinal symptoms. During 8 months without TPN last year (mostly at home) Karen had an average of around 600 calories at most and an average of around 900mls of fluid at most in each 24 hours and sometimes much less calories and fluid. During her current hospital admission she has managed even less PEG-J feed - the most has been 126 calories in 24 hours. Obviously, these amounts are nowhere near enough.
Since 2021 Karen’s TPN was stopped 3 times in hospital and she would have died had not the TPN eventually been recommenced. ESHT said in their letter about stopping Karen’s TPN again. This should not happen as Karen cannot tolerate anywhere near enough feed through her PEG-J tube.
Karen has major fears about going to St Marks. St Marks is 100 miles away. Travelling to and being at the unit would make the very severe ME much worse and could be life threatening. They have a strong psychiatric approach at the unit. We are also all very concerned about St Marks attitudes about very severe ME. They are not accepting all of Karen's needs and limitations and how the travelling to and being at the unit would adversely affect the very severe ME. Also, in their responses to Karen’s 1st set of questions, St Marks indicated that they are reluctant to give Karen home TPN. We are continuing to ask for Karen to have remote setting up of home TPN while she is Conquest hospital.
Karen has been on I/V antibiotics for her PEG-J infection for a week but it has been slow to improve. Microbiology have advised that the I/V antibiotics course be extended by up to another week and so Karen is continuing the I/V antibiotics.
We do not know yet when Karen’s PEG-J tube will be changed. It needs to be done on a suitable date for Karen.
The letter Karen received from ESHT has caused her a lot of stress, distress and loss of sleep and rest. Compiling the reply in such a short time caused Karen a lot of over exertion. It’s all affected the ME badly. Karen continues to be scared and very worried about the situation and Heather and Michael are also.
Please tell as many people as possible about Karen’s situation and this petition and continue to share it on-line.
Best wishes to you all.
Karen, Heather & Michael