Please help save Carla's life by joining in a Twitter storm 11am -1pm UK time on Thursday 18th April 2024
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Countrygirl
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Yes, it is! It can happen to any of us as they can simply declare us to be without capacity for not agreeing to their harmful treatment. We then have no right to resist whatever they want to do to us. There is no authority to stop them as the General Medical Council takes no responsibility.
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Are there any safe hospitals for severe patients over there? I shudder to think that one's choice is either to die at home or to be held against their will and tortured at a hospital.
Actually, false imprisonment is an offense, as implied by the "false" in the term.
To quote the relevant excerpts from the article I linked to earlier:
Countrygirl
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No, we haven't heard of one.
Countrygirl
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https://x.com/TheChronicColab/status/1791565124450623842
OK so we have a critical update on #SaveCarlasLife #ExposeMENow. We are watching the NHS kill a very severe ME patient in real time and we have literally been trying every possible route out of this
Transcript of the above video
Hi everyone, so we've been quite quiet about what's been going on with Carla. It's because there has been stuff going on behind the scenes that we've been trying to facilitate. However, during the process of this facilitation, Carla's situation has deteriorated rapidly, and I mean rapidly. In short, the hospital have increased her feed, which has caused her extreme pain to the point where she can no longer tolerate feeding. We've literally just found out now this evening, and we didn't realise, even though we'd spoken to her family repeatedly over the past few days, she has not only not had any of her feed since yesterday, that is Thursday morning, so 36 hours, she's not had any IV fluids for around 36 hours either. So she's not had anything for 36 hours, and we were just on the phone now while her family were on the phone to the hospital, and they're still fucking around with, oh well we need to find someone to put a cannula in 36 hours later. It's so that anyone who knows anything about basic medicine, 36 hours without food or fluid is critical, and they still have not acted upon it. Carla's father Pierre has recorded a video message that he wants everyone to see and hear, and we will be putting that out in due course once it comes across. However, we are now considering what action to take very quickly regarding the hospital and Carla's situation, because as we've said it before, and we warned before, we are watching a person with very severe ME potentially die in real time here, and we have to act quickly to sort this out, so there'll be more updates coming #SaveCarlasLife #ExposeMENow
OK so we have a critical update on #SaveCarlasLife #ExposeMENow. We are watching the NHS kill a very severe ME patient in real time and we have literally been trying every possible route out of this
Transcript of the above video
Hi everyone, so we've been quite quiet about what's been going on with Carla. It's because there has been stuff going on behind the scenes that we've been trying to facilitate. However, during the process of this facilitation, Carla's situation has deteriorated rapidly, and I mean rapidly. In short, the hospital have increased her feed, which has caused her extreme pain to the point where she can no longer tolerate feeding. We've literally just found out now this evening, and we didn't realise, even though we'd spoken to her family repeatedly over the past few days, she has not only not had any of her feed since yesterday, that is Thursday morning, so 36 hours, she's not had any IV fluids for around 36 hours either. So she's not had anything for 36 hours, and we were just on the phone now while her family were on the phone to the hospital, and they're still fucking around with, oh well we need to find someone to put a cannula in 36 hours later. It's so that anyone who knows anything about basic medicine, 36 hours without food or fluid is critical, and they still have not acted upon it. Carla's father Pierre has recorded a video message that he wants everyone to see and hear, and we will be putting that out in due course once it comes across. However, we are now considering what action to take very quickly regarding the hospital and Carla's situation, because as we've said it before, and we warned before, we are watching a person with very severe ME potentially die in real time here, and we have to act quickly to sort this out, so there'll be more updates coming #SaveCarlasLife #ExposeMENow
Countrygirl
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Carla update 20th May
https://x.com/TheChronicColab/status/1792626650191913442
Transcript of above video Hi everyone, I just wanted to give a brief update on the situation with Carla. It's Monday today. So Carla is not tolerating the feed at all. It is too painful for her. She's now refusing medication and she's also now refusing the IV drip, which we obviously got put back in on Friday after they left it out for 36 hours. The hospital are now saying if she continues to refuse then they will section her. It's unclear if they mean section or deprivation of liberty safeguarding. I wanted to put this update out because it's a very, very good example of exactly what medical professionals do. They have forced Carla into a position where she can no longer tolerate any of these treatments, be it the feed, the IV drip, because of the fact they're doing it all incorrectly and have been doing it incorrectly from the start. So she is rightly, you know, you burn yourself in the flame, you don't do it again. She is rightly going, I can't tolerate this, it's too painful for me. And now it's her fault and she's going to be psychologized and, you know, put under either Mental Health Act or Mental Capacity Act because of the facts of what they have done to force her into this position. It is classic medical gaslighting and, you know, it's a classic fucking maneuver. And we see what they're doing and we know what they're doing. And effectively they have said to Pierre and Caroline that Carla has until Wednesday and at that point then they're going to look at either one of those mental health interventions. So we will keep you updated with how that is progressing. #SaveCarlasLife #ExposeMENow
https://x.com/TheChronicColab/status/1792626650191913442
Transcript of above video Hi everyone, I just wanted to give a brief update on the situation with Carla. It's Monday today. So Carla is not tolerating the feed at all. It is too painful for her. She's now refusing medication and she's also now refusing the IV drip, which we obviously got put back in on Friday after they left it out for 36 hours. The hospital are now saying if she continues to refuse then they will section her. It's unclear if they mean section or deprivation of liberty safeguarding. I wanted to put this update out because it's a very, very good example of exactly what medical professionals do. They have forced Carla into a position where she can no longer tolerate any of these treatments, be it the feed, the IV drip, because of the fact they're doing it all incorrectly and have been doing it incorrectly from the start. So she is rightly, you know, you burn yourself in the flame, you don't do it again. She is rightly going, I can't tolerate this, it's too painful for me. And now it's her fault and she's going to be psychologized and, you know, put under either Mental Health Act or Mental Capacity Act because of the facts of what they have done to force her into this position. It is classic medical gaslighting and, you know, it's a classic fucking maneuver. And we see what they're doing and we know what they're doing. And effectively they have said to Pierre and Caroline that Carla has until Wednesday and at that point then they're going to look at either one of those mental health interventions. So we will keep you updated with how that is progressing. #SaveCarlasLife #ExposeMENow
ChrisD
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Just want to add that if there is another Twitter storm, maybe this Thursday? That it's a good day for politics Twitter traffic by using #pmqs #pmq (usually trends weds and thurs), then #bbcqt #questiontime (trends Thurs and fri), also bbclaurak, politicslive, newsnight, nhs, scandal, jeremyvine, theoneshow, thismorning, GMB. All trend well and get more eyes on ME.
Countrygirl
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Update on Carla. 24th May 2024
https://x.com/TheChronicColab/status/1794100489199432009
Transcript of above video 1/2
Hi everyone, we thought we would do an end of week roundup to get everyone up to speed as best we can where things are at. So with regards to Carla, we can confirm that the barrister we found, who we believe is an expert in just the areas that are needed, has got involved. He has written what is essentially a letter before action in every sense but the legal definition of one to the hospital outlining exactly what they need to change in terms of Carla's care and telling them that if they were not willing to change then they need to apply to the court of protection to get a judge to decide if what they are doing is correct for Carla and that if they weren't willing to apply to the court of protection then the barrister will take them to the court of protection to get a judge to decide.
This letter was delivered on Thursday but before that Pierre, Carla's father, told the hospital that a barrister was involved and interestingly they immediately reduced her feed from the 100 mls an hour that she was not tolerating to 75 mls and reduced the rate at which it was going in as well which had made Carla more comfortable. However, several hours ago, at half past five on Friday night before bank holiday weekend, the integrated care board decided to inform the care agency that had been providing community care which had transferred into the hospital, that is there were two carers there 24-7 for Carla, decided to pull the plug on that and pass the care over to hospital staff. As things stand the hospital staff that Pierre has spoken to have not guaranteed that it's going to be replicated like for like.
This leaves Carla at extreme risk of neglect because there's no guarantee of the hours hospital care is going to be doing. It leaves her at risk of becoming constipated which would then have a direct impact on her ability to tolerate her feeding. It also leaves her at risk due to her unmedicated uncontrolled seizures because the carers were also outside the door all the time to be able to be aware immediately if she was having a seizure and that is no longer the case.
So we're trying to take as drastic action as possible to resolve the situation but they've tied it up in knots because it is a Friday night and they literally informed the agency and Pierre just after five o'clock on a Friday. Very tactical move from the ICB. So we're trying to deal with this.
We've got an ME expert to quickly draft a letter of concern to the hospital regarding the situation and we will see what happens with that. But the barrister is involved and that was proven fruitful and the hospital have seven days to respond to that letter before further action is taken. With regards to Millie we've been in touch with the family nearly every day this week.
I don't want to use the phrase but there are things going on behind the scenes. If the family wish to put updates out they will do so via the person who does their social media but there is a lot going on there and we have been quite heavily involved this week. On a more positive note we're pleased to say that one of the participants on our Amplify journalism training programme has had their pitch accepted by the BMJ.
So at some point you'll see an article from one of our journalism trainees go out on the BMJ which is good. And the last thing we want to say is we are aware that there's a lot of upset and anger and distress in the community because the general election means that the all-party parliamentary group the APPG will disband therefore their inquiry into severe ME will stop. And we're also aware that two of the major charities are saying at the minute that they do not have capacity staff-wise to be doing certain things I think mainly around their social media.
Obviously the APPG disbanding is standard rules during purdah, the time before an election and when parliament changes. We would like to assure everyone that we're not going on purdah. We might be a bit at capacity Transcript of above video 2/2 in terms of what we can do but we will certainly continue to be doing everything we are doing and more. We've done some updates to the website today. We are aware that there are mutterings in the community about other patients. But yeah we aren't going on perda so we'll be around to make sure things don't go by the wayside in certain areas. But that's where we're at. We're going to try and take a bit of a break over the weekend and we hope you'll do too. Please try and have a peaceful and as restful as possible bank holiday weekend and we'll speak to you soon.
https://x.com/TheChronicColab/status/1794100489199432009
Transcript of above video 1/2
Hi everyone, we thought we would do an end of week roundup to get everyone up to speed as best we can where things are at. So with regards to Carla, we can confirm that the barrister we found, who we believe is an expert in just the areas that are needed, has got involved. He has written what is essentially a letter before action in every sense but the legal definition of one to the hospital outlining exactly what they need to change in terms of Carla's care and telling them that if they were not willing to change then they need to apply to the court of protection to get a judge to decide if what they are doing is correct for Carla and that if they weren't willing to apply to the court of protection then the barrister will take them to the court of protection to get a judge to decide.
This letter was delivered on Thursday but before that Pierre, Carla's father, told the hospital that a barrister was involved and interestingly they immediately reduced her feed from the 100 mls an hour that she was not tolerating to 75 mls and reduced the rate at which it was going in as well which had made Carla more comfortable. However, several hours ago, at half past five on Friday night before bank holiday weekend, the integrated care board decided to inform the care agency that had been providing community care which had transferred into the hospital, that is there were two carers there 24-7 for Carla, decided to pull the plug on that and pass the care over to hospital staff. As things stand the hospital staff that Pierre has spoken to have not guaranteed that it's going to be replicated like for like.
This leaves Carla at extreme risk of neglect because there's no guarantee of the hours hospital care is going to be doing. It leaves her at risk of becoming constipated which would then have a direct impact on her ability to tolerate her feeding. It also leaves her at risk due to her unmedicated uncontrolled seizures because the carers were also outside the door all the time to be able to be aware immediately if she was having a seizure and that is no longer the case.
So we're trying to take as drastic action as possible to resolve the situation but they've tied it up in knots because it is a Friday night and they literally informed the agency and Pierre just after five o'clock on a Friday. Very tactical move from the ICB. So we're trying to deal with this.
We've got an ME expert to quickly draft a letter of concern to the hospital regarding the situation and we will see what happens with that. But the barrister is involved and that was proven fruitful and the hospital have seven days to respond to that letter before further action is taken. With regards to Millie we've been in touch with the family nearly every day this week.
I don't want to use the phrase but there are things going on behind the scenes. If the family wish to put updates out they will do so via the person who does their social media but there is a lot going on there and we have been quite heavily involved this week. On a more positive note we're pleased to say that one of the participants on our Amplify journalism training programme has had their pitch accepted by the BMJ.
So at some point you'll see an article from one of our journalism trainees go out on the BMJ which is good. And the last thing we want to say is we are aware that there's a lot of upset and anger and distress in the community because the general election means that the all-party parliamentary group the APPG will disband therefore their inquiry into severe ME will stop. And we're also aware that two of the major charities are saying at the minute that they do not have capacity staff-wise to be doing certain things I think mainly around their social media.
Obviously the APPG disbanding is standard rules during purdah, the time before an election and when parliament changes. We would like to assure everyone that we're not going on purdah. We might be a bit at capacity Transcript of above video 2/2 in terms of what we can do but we will certainly continue to be doing everything we are doing and more. We've done some updates to the website today. We are aware that there are mutterings in the community about other patients. But yeah we aren't going on perda so we'll be around to make sure things don't go by the wayside in certain areas. But that's where we're at. We're going to try and take a bit of a break over the weekend and we hope you'll do too. Please try and have a peaceful and as restful as possible bank holiday weekend and we'll speak to you soon.
Countrygirl
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Update on Carla by Pierre, Carla's father
https://x.com/TheChronicColab/status/1794310092742934529
Transcript of above video 1/2 Hello, hi, I am Pierre, Carlas father. Well, she's lying here in West Middlesex Hospital. I came to speak here because I couldn't speak inside (This was recorded on Friday night) Actually, we were shocked today with unexpected decision from the hospital, which put, will put my daughter's life more in risk and danger, as well as our life, as her parents. What they did, she has 24-hour carers. Always they are here. As ME CFS patient, all they know, and according to NICE guideline, that the CFS patients cannot let anyone to touch his body or to come or to wash, unless firstly, they should known by her for a while and trained with her while. Secondly, they have to be trained according to NICE guideline, how to wash her, how to touch her, how to do everything with her, because her body is very sensitive. A very sensitive skin, as well for all the pain and the time and the need to be patient someone with them. And they should be trained according to NICE guideline, not anyone. So what happened? The hospital, after about 5.30, I was informed when everything closed and when they canceled the doctors all day, they went outside. Okay. We've been informed suddenly that the carers, they will not come anymore. The agency called me and they say, just now we received a call from the ICB said that you have to stop sending the carer from tonight.
So firstly, they didn't give us time. They just chucked us with their decision. Okay. The ICB said that the hospital complained, said they don't want the carer anymore. They have their own staff trained to put, to provide Carla with one-to-one support and they will put additional staff for her starting from tonight. Firstly, I asked them and I asked the hospital now inside who are in charge. I said, is there any one will be put in for Carla, especially one-to-one? The (nurse) in charge she said to me, no, there is nothing from that.
So I told her there is no additional staff or one special for my daughter, Carla. She said, no, nothing. So the hospital informed the ICB and gave them promises which they didn't do it. So now my daughter, she will be left and especially she has a seizure and she cannot let anyone, the carers, they are almost one year with her and they know her and she don't let anyone, even there is three new carers, she don't let them to touch her, but except the old one. Now the old one went. This is now they ask him to leave. No carer. Who will wash my daughter? What will happen to her? This will make her to hold her poo and pee, which caused to her a lot of infection. Moreover, that will lead to reduce her, her feed. Okay. And she cannot be eat because she don't, she cannot be make poo because no one can do it. There is only one solution that I have to stay with my wife 24 hours now here. Because the carer not only to clean her and to see her, but they used to stay beside her door 24 hours exact and always they check on her and always we call them from home and we follow with them if there is anything and if there is anyone come because anyone can open the door at home. They always ask them, please wait. If there is doctor, please, if there is anything, call the parents. So always they be like this. But the hospital, they didn't want this to be happened. So they, now this is steps is kind of revenge, clearly revenge. Because firstly, they didn't inform us about this. They didn't put us in the image that they are planning for this. They didn't provide us. They said to ICB who funded the carers, they didn't inform them with the wrong information that they will put one-to-one and they will provide. And even though, even if there is one-to-one should be trained according to NICE guideline, how to treat and how to wash and how to change the clothes and how to change the sheets. All this is with a ME CFS patient. Now, I am and her mother, we are not young. We are all people. Secondly, we have a serious health issues.
11:10 AM · May 25, 2024
Transcript of above video 2/2
And this situation will put our life as well in danger. Her mom cannot hold in her hand. Okay. And I have a very critical health situation. So this will put us as a family now, all in high risk. So the hospital, front of all you the public, front of the parliament, front of the government, front of anyone have the authority, front of you, your majesty king, front of everyone. The hospital will hold the responsibility about not only about my daughter life, but as well about our life. Her parents, they are just revenging. They don't care. They don't believe in ME CFS as physical. And they didn't care for anything. Just they want to do anything to show that they are correct and to revenge. That was very clear.
Please, we need your support all. We need from anyone is hearing me. Is he or she can see what they are doing with us. Please, we need your support. We need it in this critical time. We need it really. Because look what they when they do it in the last minute, Friday evening. And now there is three days, Saturday, Sunday holiday, and Monday is bank holiday. So we will be with we will die in this three days to stay 24 hours. My daughter not sleeping. And I don't know how we wash her because she need two to be washed. Her mother always beside her. And the other carer will wash her. Now how? We will not be able to do anything. Anything will not be able to do. So that's they left Carla to death. They are damaging her health on purpose. On purpose. #SaveCarlasLife #ExposeMENow
11:11 AM · May 25, 2024
https://x.com/TheChronicColab/status/1794310092742934529
Transcript of above video 1/2 Hello, hi, I am Pierre, Carlas father. Well, she's lying here in West Middlesex Hospital. I came to speak here because I couldn't speak inside (This was recorded on Friday night) Actually, we were shocked today with unexpected decision from the hospital, which put, will put my daughter's life more in risk and danger, as well as our life, as her parents. What they did, she has 24-hour carers. Always they are here. As ME CFS patient, all they know, and according to NICE guideline, that the CFS patients cannot let anyone to touch his body or to come or to wash, unless firstly, they should known by her for a while and trained with her while. Secondly, they have to be trained according to NICE guideline, how to wash her, how to touch her, how to do everything with her, because her body is very sensitive. A very sensitive skin, as well for all the pain and the time and the need to be patient someone with them. And they should be trained according to NICE guideline, not anyone. So what happened? The hospital, after about 5.30, I was informed when everything closed and when they canceled the doctors all day, they went outside. Okay. We've been informed suddenly that the carers, they will not come anymore. The agency called me and they say, just now we received a call from the ICB said that you have to stop sending the carer from tonight.
So firstly, they didn't give us time. They just chucked us with their decision. Okay. The ICB said that the hospital complained, said they don't want the carer anymore. They have their own staff trained to put, to provide Carla with one-to-one support and they will put additional staff for her starting from tonight. Firstly, I asked them and I asked the hospital now inside who are in charge. I said, is there any one will be put in for Carla, especially one-to-one? The (nurse) in charge she said to me, no, there is nothing from that.
So I told her there is no additional staff or one special for my daughter, Carla. She said, no, nothing. So the hospital informed the ICB and gave them promises which they didn't do it. So now my daughter, she will be left and especially she has a seizure and she cannot let anyone, the carers, they are almost one year with her and they know her and she don't let anyone, even there is three new carers, she don't let them to touch her, but except the old one. Now the old one went. This is now they ask him to leave. No carer. Who will wash my daughter? What will happen to her? This will make her to hold her poo and pee, which caused to her a lot of infection. Moreover, that will lead to reduce her, her feed. Okay. And she cannot be eat because she don't, she cannot be make poo because no one can do it. There is only one solution that I have to stay with my wife 24 hours now here. Because the carer not only to clean her and to see her, but they used to stay beside her door 24 hours exact and always they check on her and always we call them from home and we follow with them if there is anything and if there is anyone come because anyone can open the door at home. They always ask them, please wait. If there is doctor, please, if there is anything, call the parents. So always they be like this. But the hospital, they didn't want this to be happened. So they, now this is steps is kind of revenge, clearly revenge. Because firstly, they didn't inform us about this. They didn't put us in the image that they are planning for this. They didn't provide us. They said to ICB who funded the carers, they didn't inform them with the wrong information that they will put one-to-one and they will provide. And even though, even if there is one-to-one should be trained according to NICE guideline, how to treat and how to wash and how to change the clothes and how to change the sheets. All this is with a ME CFS patient. Now, I am and her mother, we are not young. We are all people. Secondly, we have a serious health issues.
11:10 AM · May 25, 2024
Transcript of above video 2/2
And this situation will put our life as well in danger. Her mom cannot hold in her hand. Okay. And I have a very critical health situation. So this will put us as a family now, all in high risk. So the hospital, front of all you the public, front of the parliament, front of the government, front of anyone have the authority, front of you, your majesty king, front of everyone. The hospital will hold the responsibility about not only about my daughter life, but as well about our life. Her parents, they are just revenging. They don't care. They don't believe in ME CFS as physical. And they didn't care for anything. Just they want to do anything to show that they are correct and to revenge. That was very clear.
Please, we need your support all. We need from anyone is hearing me. Is he or she can see what they are doing with us. Please, we need your support. We need it in this critical time. We need it really. Because look what they when they do it in the last minute, Friday evening. And now there is three days, Saturday, Sunday holiday, and Monday is bank holiday. So we will be with we will die in this three days to stay 24 hours. My daughter not sleeping. And I don't know how we wash her because she need two to be washed. Her mother always beside her. And the other carer will wash her. Now how? We will not be able to do anything. Anything will not be able to do. So that's they left Carla to death. They are damaging her health on purpose. On purpose. #SaveCarlasLife #ExposeMENow
11:11 AM · May 25, 2024