Hi Shawn, I have been following your story with interest and so am horrified to hear this latest awful turn of events. I am so saddened to hear what happened to you, but not surprised ass I have also suffered at the hands of the NHS (not physical abuse I may add).
I can only reiterate what Jonathon Edwards has said - the NHS is in complete freefall - im now to wait 6 months for an urgent apt with a spinal team after the GP and then another consultamnt took three years to find out I actually don't have a bowel disease but an injury with severe chronic inflammation to my coccyx, which means I haven't been able to sit down now for well over two years. It has been a very distressing time on top oif everythimng else. In effect I am only waiting for a trial of a steroid injection - unbelievable that it has taken YEARS to get to this point.
Obviously your situation is more urgemt amd important - but this is now the state of things, and it is not OK.
I am in the process of booking a flight back to Shanghai,cheapest is Virgin Dreamliner direct 11 hours ,hopefully the flight will have empty seats I can sleep on,I am having breathing difficulties now I feel so unsafe because I feel should anything happen I won't be treated here even Charing Cross put a notice on the system that said I am not to be treated there for this condition,what did I do to deserve this disdain ?i had respect ,value and achievement in Shanghai ,my life meant something and I had a brilliant circle of friends and connections ,now I am a target of distrust ,contempt and mockery,why ?..just because I have a Neuro immune ME like illness with A typical symptoms ,my aim is simply to stay alive ,to spend time with my mother who I have been separated from for a long time,yet I can't ,once again I must drag a heavy suitcase go through the stress of travel just to get a inexpensive low dose of cyclophosphamide to keep myself out of dangerous waters,yes the drug has a 1-2% increased chance of cancer so what ?according to latest studies CT scans can raise the chance of cancer by 20% and I have had 2 of those (regretfully) so what's 1% more ? Most people get some form of cancer in Their life so odds are I would get it sooner or later regardless anyway ,1-2% extra risk is worth it to stop the destruction of my nervous system..I should never have been made to wait a month on false promises ,only to have it canceled at the last minute and kicked out into the wilderness with another months wait for an appointment.
Now the reality checks home ,sufferers here may find their auto antibodies and
Causes, but it won't garuntee treatment ,probally not in the UK anyway,I'll buy travel insurance again,docs in China play ball and usually won't mention it's a previous condition.Fingers crossed.
This is gonna make a great story for the papers here and in esp in China "Sick British man beat up in UK hospital finds refuge in Shanghai medical care" +1 for communist China where doctors trust me and talk to me as the intelligent human being that i am.
If I take the punch out of this flare I may be able to make it back to see Doctor Zandi for a long term plan "if he agrees to do that for me" who knows only ,time will tell.