Has anybody received treatment at the Cromwell Hospital? (UK)

[spinachhands]

Bit of a follow-up to my previous thread, but my partner's current doctors both seem to want to get my partner to the Cromwell Hospital in London, for treatment with plasmapheresis, plasma exchange, or IVIG.
I've been having a look at their website and it's left me a little skeptical. They seem to offer an "intensive in-patient recovery program" for long COVID that involves daily physiotherapy and exercise which...doesn't seem like a good sign. And the IVIG I was on board with given my partner's severe immune/autonomic dysfunction and the promise that IVIG has had for that in the US. But things like apheresis are still really understudied and I'm worried about spending a lot of money for something high risk with very little good research behind it. My partner's condition is extremely severe, we will need to hire a private ambulance to get them to London, and they would have to stay as an inpatient, they are too unwell to stay in a hotel. Plasmapheresis is done once every other day over 5-10 days. At a private hospital that's just something we can't afford. I don't even know if they could make that journey.

Its also not filling me with hope that I can't find any mentions of the Cromwell on forums or groups for long COVID or ME. Has anyone ever received treatment there or know any more about the doctors there?

 

[Jonathan Edwards]

Hi @spinachhands ,

There is no good theoretical reason for using plasmapheresis or apheresis in Long Covid and no evidence base of effectiveness. Paying for treatment of this sort is to my mind throwing money down the drain. I am very happy to discuss more on a private message. I do not provide personal advice as I am no longer registered to practice but I can often make general suggestions.

Any effects from either IVIg or apheresis are expected to be temporary anyway. Outside of formal trials I find it hard to see how they can be ethically offered to patients.

 

[MrMagoo]

Bit of a follow-up to my previous thread, but my partner's current doctors both seem to want to get my partner to the Cromwell Hospital in London, for treatment with plasmapheresis, plasma exchange, or IVIG.
I've been having a look at their website and it's left me a little skeptical. They seem to offer an "intensive in-patient recovery program" for long COVID that involves daily physiotherapy and exercise which...doesn't seem like a good sign. And the IVIG I was on board with given my partner's severe immune/autonomic dysfunction and the promise that IVIG has had for that in the US. But things like apheresis are still really understudied and I'm worried about spending a lot of money for something high risk with very little good research behind it. My partner's condition is extremely severe, we will need to hire a private ambulance to get them to London, and they would have to stay as an inpatient, they are too unwell to stay in a hotel. Plasmapheresis is done once every other day over 5-10 days. At a private hospital that's just something we can't afford. I don't even know if they could make that journey.

It’s also not filling me with hope that I can't find any mentions of the Cromwell on forums or groups for long COVID or ME. Has anyone ever received treatment there or know any more about the doctors there?

I would ask the Dr’s for the reasons, chances of success/improvement and evidence base for treatments. As they seem private, you may have a chance at actually getting a response. That would be my starting point, because I’d want them to show my how this was worth my time (and money).