Petition: Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings

Latest update

St Marks hospital still refusing to give Karen remote setting up of home I/V feeding.

"Karen spent a lot of time and energy preparing for the call with St Marks.

On Friday the 16th of August, Karen had the call with Dr Gabe, Lead Consultant at St Marks Intestinal Rehabilitation Unit (IRU) and a Nurse Consultant from St Marks IRU. Heather and Karen’s local gastroenterology Consultant were in the room with Karen. An advocacy worker from the 25% ME Support group for the severely affected was also on the ‘Teams’ call.

It was scheduled for 12.00pm. Unfortunately, Dr Gabe was not available then as he was in theatre so the call was delayed until nearly 12.45pm. Once it did start, after a while he had to leave the call as he was called away. So the call ended. We do understand it was unavoidable but it meant that the call was disjointed and it meant that hardly any of the important subjects we had planned to talk about got covered.

From near the start of the call Dr Gabe was adamant that he will not give Karen remote setting up of home PN (I/V feeding). Karen said if she can’t go (because of the very severe ME) to the unit then ESHT will stop her TPN and she will die.

When Dr Gabe got called away he suggested another call which everyone agreed to. We don’t yet know when it will be. Karen will need much more information from St Marks before she can make an informed decision."

More at https://www.change.org/p/save-karen...nd-dehydration-due-to-nhs-failings/u/32829834
 
My heart goes out to Karen and family, this has been and is so awful. I don't even know what I can/should write because of not wanting to make anything worse, which is also awful.

I'll try when I say if only people could understand the deep heartbreak caused from feeling that there has been deafness when people use all their energy to try and speak to survive.

And I remember the post about her cat and what a huge important plea that would have been, and wish those who perhaps can't imagine could imagine what these things are to be through so much hell and just have got to be near her beloved pet even just for a short time, when so much else had been taken due to such illness for so long.

I wish that somehow they feel not alone, definitely not forgotten, and my heart breaks for them.
 
update yesterday (10th October)

Petition Update
Karen’s case to be in ‘The Times’


Hello Everyone.

‘The Times’ plan to feature Karen’s case in an article on Saturday the 12th of October. It will be in print in the newspaper and online.

On Tuesday the 8th of October we reached 18,000 signatures on our petition! That’s fantastic! Thank you so much to you all.

Please keep sharing this petition and telling people about Karen’s situation.

Thank you to everyone for your support.
 
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Michael Gordon shared an update on Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings. Check it out and leave a comment:

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Petition Update
Karen’s case now planned to be in ‘The Times’ on Monday


Hello Everyone

‘The Times’ have told us that the article featuring Karen’s case has had to be postponed and that they now hope to publish it on Monday the 14th of October.

Please keep sharing this petition and telling people about Karen’s situation.

Thank you to everyone for your support.

Best wishes to you all.
Karen, Heather & Michael
 
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The local hospital says
“We have been working with a specialist NHS centre that has this expertise, as a national leader in their field, to arrange a course of treatment that we believe can improve Karen’s condition."

Has anyone any idea what this involves and where. I will check back to see if we have details.

Edit: looking back I guess this is the same situation as a year ago. I don't understand why provision cannot be made in Essex. I am not aware that St Mark's would have anything more to offer. But maybe this refers to siting of PEG or whatever.

I would be happy to try to help but I am cannot promise to be able to provide a solution.

Edit/edit: It seems to be all around TPN. It seems odd that the focus is not on PEG for these people?
 
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The Times, in print copy today page 11, has an article titled " ME patient fears for life in NHS row" referring to Karen Gordon. I don't have the skills to place a photo of the article here; maybe someone else can @Nightsong.

It's good to see the Times continuing to run with ME and also good to see the issue bringing the NHS into view.

If I can find a copy of the article online, I'll edit it in.
 
Article in the Times by Fiona Hamilton refers to " family's fear of lack of expertise on ME", Devon Coroner's view that NHS needs to address the " non existent" care available to ME sufferers and the lack of funding for research.

This is a totally different narrative from the one that held sway for so many years of aggressive, hostile patients threatening doctors. The new narrative is beginning to coalesce around features of the illness( such as its hypersensitivity) and the failings of the NHS in treating it. This narrative is not yet fully established but is building.

An aside- this article says that Karen is being fed with nutrients directly into the blood stream. Why was it not possible to feed Maeve in this way? The hospital refers to its working with a specialist NHS centre to arrange a course of treatment for Karen. Is this a reference to the Royal Devon and Exeter where Hemsley seems to be moving things on?
 
Trish said:
There is no detail given on the 'specialist centre'. I hope it's not CBT/GET.
Click to expand...

In the past the specialist centre involved has been St Mark's gastroenterology. My reading of the text available is that St Mark's is prepared to set up TPN at St Mark's for a trial period but not to set it up at home. That would seem reasonable since the procedure is not trivial and needs to be very sterile.

What is less clear is whether St Marks think they have other things to offer. I actually suspect not. However, they were not prepared to offer a single side room I think.
 
One of the things I find difficult to judge here is how reasonable demands from patients and carers are if things are really difficult. If it is not reasonable to suggest setting up sterile TPN locally and the patient needs to be taken by ambulance to a specialist centre then maybe that is what has to be accepted. I don't think patients should be denied side rooms since they are available for various other types of patient, but the transportation aspect may simply be unavoidable.
 
Is it beyond the realms of possibility for a Dr or small team from St Marks to travel the 100 miles instead of Karen.

that may be outside normal practice but surely there’s always scope to do something different in exceptional cases
 
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