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Background:

A Severe ME/CFS Patient in the UK named Karen Gordon went to the Conquest Hospital Hastings when her Jtube broke in hopes of getting a new one installed. Instead, the hospital has refused to give her a new Jtube or let her go home with Total Parenteral Nutrition (TPN), holding her hostage at the hospital for months. They have now given her an ultimatum that she must decide within 48 hours between being sent 100 miles to the St Mark’s Hospital in London to be re assessed for GI issues by Doctors who know nothing about ME/CFS and do not follow the NICE guidelines and therefore will not give her a Jtube. Or they will discharge her with no TPN to starve to death at home. Either option will kill her. This letter is an urgent attempt to make the hospital aware that they will kill her so they will change course and send Karen home with a PEG/Jtube or TPN so she can live.

Letter:

Dear CEO and Directors of East Sussex Healthcare NHS Trust and the management of Conquest Hospital Hastings and Eastbourne District General Hospital,

My name is Whitney Dafoe and I am sick with a similarly severe case of ME/CFS to Karen Gordon with very similar symptoms.

Karen Gordon’s situation is very simple. She cannot eat enough food to survive. You are requiring her to travel 100 miles to St Mark’s Hospital in London to receive a very routine treatment - a new PEG/J tube or TPN that you would immediately give to a patient there at Conquest Hospital Hastings if Karen had any other illness. But which you refuse to give to Karen simply because she has ME. This is prejudice, plain and simple.

Requiring Karen to be assessed for GI issues before receiving either a PEG/J tube or TPN is a waste of precious time as Karen’s condition worsens. Sending Karen 100 miles is very likely to kill her or make her condition so much worse that she winds up dying; As a direct result of this travel and stay at a new hospital, with all new doctors and staff, none of whom understand her illness or how to treat her according to the NICE guidelines so that she does not get worse.

The worldwide scientific and medical communities do not know what causes GI issues with ME patients. None of the doctors at any NHS hospital will find anything wrong, and then they will try to deny Karen treatment. But Karen’s GI symptoms are very common with ME, in mild to severe patients. Thousands of ME patients around the world have the same GI issues as Karen. Just because we do not know what the cause is does not mean it is not a serious, physiological problem with Karen’s GI system.

Please do not require Karen to travel 100 miles to go to a different hospital to be assessed for her GI issues, which the world’s leading ME experts already recognize have unknown causes. Please treat Karen there, at Conquest Hospital Hastings, with a PEG/J tube or TPN and then let her go home with it. Just as you would do if Karen had any illness other than ME. You cannot let someone die simply because they have ME.

I would like to tell you how my experience has been with severe ME and both TPN and a PEG/J tube at home so you might understand how safe this is, and think about the seriousness of Karen not getting food (certain death) rather than worrying about a routine treatment that is extremely unlikely to cause any harm or complications.

I have had a PEG/J tube for over 8 years, since January 8, 2016 with no complications of any kind. The only thing that has happened is that every tube eventually breaks, like Karen’s did and I go to my local hospital in a gurney while sedated on the drug Lorazepam so the trip does not make my health condition worse, and have the PEG/Jtube replaced. I have had at least 8 PEG/J tubes now.

Every single day I pump food (formula) into the J part of the tube and inject 45cc of pureed food into the G part of the tube to make sure my stomach does not atrophy. I can not tolerate pumping even a small amount of food into the G tube.

I often have the food pump running into the PEG/J tube for 12 hours at a time or more, it makes no difference how long I have food pumping, my symptoms and state of health is the same with the food pump on or off. I always lay flat when food is being pumped into me and laying flat has never, not once been an issue or even caused any nausea or discomfort. Not once. The tube has never pulled out, or gotten curled up, and I have never aspirated. It has also never gotten infected and I go days between cleaning it with hydrogen peroxide and also cannot change my bottom sheet more than once every few months, so it is not in a very sterile environment. Yet the tube has, for over 8 years, been completely fine, with no hint of infection or bad bacterial growth of any kind.

Every few months I have to go to the hospital to get the J-tube changed. I have to get a gurney transport to get there because I am not able to walk or move to a wheelchair, but gurney transports are readily available. The hospital is very accommodating. They give me a private room and allow me to keep the lights off and cover the computer and LED’s on the equipment with towels. They don’t speak with me, but instead ask my mother all questions outside the room with the door closed. My treatment is consistent with the NICE guidelines and they are very respectful of my condition. With their accommodations along with the help of the drug Lorazepam, I am not harmed by these trips. They are temporarily exhausting but my condition does not worsen for more than a week. If I did not receive the gurney, the accommodations by the hospital, and Lorazepam, I would likely not recover from just a single trip to the hospital.

Before the PEG/Jtube I had TPN through a PICC line for 18 months. I never got sepsis, but I did get a few infections. They were treated with antibiotics and I got over the infections in a matter of days and returned to my previous state of health with no damage or long term consequences. The PICC line was installed at home, and when it needed changing, it was changed at home as well. The blood sugar checks needed for TPN feeding take only a few seconds and happened without me hardly noticing. They never caused distress or stress nor did they make my symptoms worse in any way. And after my body stabilized, I no longer needed to have blood sugar tests at all anymore. My parents were trained on how to change the bandage and they do it while I'm wearing earmuffs and an eye mask so that it does not cause overstimulation that would make my health worse. The earmuffs and eye mask I use are readily available all over the UK. Changing the bandage does not cause me harm in any way. It takes an hour maximum and has never been an issue.

I still have the central line for IV fluids for hydration and haven't had an infection in many years. As mentioned above, my caregivers can’t change my sheets very often because of how much energy it takes me to tolerate. So sometimes the bottom sheet was not changed for months. Yet the issue of PICC line hygiene was managed fine in a non sterile environment. There are sterile caps you can put on the ports that prevent anything getting in, in addition to a lock on the ports themselves.

If you do not let Karen Gordon go home with a PEG/J tube or TPN installed there at the Conquest Hospital in Hastings UK, and instead require her to travel 100 miles and endure weeks of superfluous new assessments, she will die. It is that simple. She cannot be transported to a different hospital and start a new unnecessary diagnostic process all over again with Doctors who will abuse her by ignoring the NICE guidelines for caring for ME patients. Her health will deteriorate to the point that she will not recover. You already know what the problem is. She cannot eat enough food to survive. This is a common health problem that you know how to solve. You need to act now, or Karen will die. And make no mistake, her death will be 100% your fault and the world is watching. Please see the news about the coroner’s inquest into the death of ME patient Maeve Boothby O’Neill from being denied a feeding tube just like you are doing to Karen. Mave’s Inquest has received nationwide news coverage, and so will Karen’s death.

If I was treated the way Karen is being treated, I would die just like Karen will die without PEG/J tube or TPN at home. Luckily, I had doctors who viewed ME as the serious physiological disease that it is. They did not force me to undergo assessments that would not provide meaningful results because it would only cause me harm. And my doctors understood that the risk of needing to take antibiotics occasionally or add a few extra steps to my daily routine was better than the certainty of death from starvation, dehydration or malnutrition, which is what will happen to Karen. Karen just needs a way to get nutrition into her body. I got TPN and then a PEG/J tube and lived. Karen is not being allowed to go home with either a PEG/J tube or TPN and will die without one of the two.

Every doctor at the Conquest Hospital Hastings took a vow to do no harm. Forcing a person to decide between jumping through unnecessary hurdles that will kill them or letting her starve to death in your care is HARM.

Thank you for your time and for caring about Karen's case.

Sincerely,
Whitney Dafoe
Severe ME/CFS Patient and Advocate