Ok I am newly diagnosed .. My gp says no treatment or referral out of area for treatment that is unproven ! How do I get access to treatment

Welcome to our SCLS Community! While I'm not knowledgeable with how to navigate Britain's NHS, and I hope you will also hear from the couple of our members who are also British, here is some generic advice: 1) You don't need out-of-area treatment for SCLS, so it's better to ask for what you really need, which is a senior anchor physician who is a specialist in internal medicine and is affiliated with a major trauma center (hospital). 2) Print out for your GP the contents of the sections in this site titled "Disorder Details" and "Disorder Resources"; then read and learn the contents; and then go over it with your GP and with every other physician or nurse that you ever encounter, so they will understand the gravity of your diagnosis and the life- and limb-saving options available. 3) Request a 2nd opinion on your diagnosis from a major medical center or, preferably, with physicians who are teaching and doing research at a nearby medical school. (Diagnostic mistakes are terribly common in medicine.) This might bring you into contact with physicians who are better informed and more compassionate. 4) Request an in-area referral to a hematologist and/or an immunologist. After all, SCLS is a hematological disorder, and the standard of preventive care involves the monthly infusion of immunoglobulins. Please fill out the profile page with as many details of your medical history as possible, because we are still learning about SCLS, and keep us updated of your progress!

Hi again,Wendy. Good advice there. I think I've been quite fortunate to have been offered ivig(although I'm fighting to keep it going). My hospital where I get the treatment (Southend University Hospital)are compiling a paper on me and my condition to published in a medical journal,hopefully they will include and enforce the use of ivig in it.As soon as I have a copy I will post it on here,provided it's helpful of course,it may help your cause. Otherwise,yes,a sympathetic,interested physician is quite important. All the best Greg

Hello again, Thank you both for your input . This is a third diagnosis first was periodic fever syndrome went to confirm that one then they said Clarksons third that I paid for also clarksons. Have filled out profile more, but hate talking about it so its brief. Greg are you saying that you need regular ivig even when not having an attack. ? Does that mean cost is a factor ? What is the average cost of this treatment. Living in Exeter is like living in a third world country with regard to getting treatment.

Hi Wendy These are approximate figures. In Australia, I receive 900ml of Octagam every fortnight. Unless I misread the statement, it costs the government $1200 per fortnight. I will never again resent paying tax, nor Medicare levy. More than anything, it takes ten to twenty blood donations to keep me going for a fortnight. I will never again forget my first blood donation. PLEASE, do not think that the fact you are feeling better means you can come off IVIG. From the pure lay point of view, it is a bit like diabetes, DO NOT come off your regular medication. From my (extensive) experience of the UK NHS, you have a great system. Stick by it. John

Thanks John Yes the nhs is great system when it works, but its a postcode lottery. I have bot been offered IViG treatment at all. Not even when in icu i was just sedated and hoped for best. I have grown up children in nyc and paris and was considering cost to establish some treatment abroad. Thr French one seems very successful. Its very frustrating being still /endless resting was not one of my strong points.