Lukkychrm42 Posted September 19, 2007 Report Posted September 19, 2007 Hey there!I see a nurse for my new patient session tomorrow, and I was just wondering if anyone knows of anyone in the UK who treats POTS other than Professor Mathias?Doesn't have to be a specialist, just willing to work with Dr. A in Virginia if necessary. Thanks! Quote
persephone Posted September 19, 2007 Report Posted September 19, 2007 Are you here yet? This is very exciting! I can't remember his name, but one of the patrons of STARS, the British Syncope Trust works near Manchester. Check out www.stars.org.ukLet me know how you get on, dear! Quote
Lukkychrm42 Posted September 20, 2007 Author Report Posted September 20, 2007 Yup I'm here! I'm gradually learning to bring my umbrella wherever I go, too. I'm all registered and ready to start classes on Monday.My disability accommodations are still being processed (since I'm an international student, the money for them won't come from the local government or social services, but has to be found in the school somewhere), but while I am waiting for things like a shower chair, shopping and laundry assistance, and so forth, I have a tape recorder, my seat cane for the incredible number and length of queues, and preordering help for the library.I'm just remembering my last visit with a new GP in England (Lancaster), the one who told me that it was perfectly normal for girls to faint, and that only in America would they worry about BP being too low instead of too high. And who told me if I thought I was so sick, then why didn't I just stay home. TRYING not to assume Manchester will be the same way. I'll check out the stars website and let you know how it goes!!Thank you, ladies! Quote
persephone Posted September 20, 2007 Report Posted September 20, 2007 Hey, Manchester won't be like that- it's great- very cosmopolitan and positive Message me on facebook and I can put you in touch with my friend there Quote
Lukkychrm42 Posted September 20, 2007 Author Report Posted September 20, 2007 The nurse I saw was really nice, and even though she wasn't familiar with my diagnoses or medicines, she put me straight through to a GP to get my prescriptions sorted out. He didn't seem to have any trouble prescribing the Midodrine- maybe its status has changed, or else they'll tell me at the chemist that I can't get it .. He needed more info on the Adderall as he wasn't familiar with the brand, and the generic name was just "amphetamine salts", rather than specifying which ones, so I printed that out for him and asked Dr. A. to fax him a case summary and such. So anyway, while they might not help if I get worse or need something new, at least it seems they'll work with me and my cardio!By the way, I've got a low-income form coming in the mail so I don't have to pay for my prescriptions- don't you think that dysautonomia and other conditions should be on the list of exemptions for not paying for prescriptions (Addison's, MG, and some others are on it, but it seems too short to me! But there are other conditions requiring extensive use of medicines..)? I mean it's still cheaper to pay for them than it can be in the States, but it's still upwards of ?75 per year per med. Quote
persephone Posted September 20, 2007 Report Posted September 20, 2007 Hey incase you don't qualify for the free prescriptions, you can buy an annual prescription card- costs about ?90 but means youcan get all the prescriptions you want for free for a year- it pays for itself about every 3 months for me! Quote
flop Posted September 20, 2007 Report Posted September 20, 2007 Hi, I've just written and then "lost" a long post, whilst I was doing that Persephone beat me to it to mention the "pre-pay certificates".Whilst you are waiting to be assessed for the free prescriptions, if you have to pay any prescription charges make sure you ask the parmacy for an "NHS receipt" - if you are then approved you can claim back the money you have already spent. I think that if your savings and total annual income add up to less than ?8000 for the year then you qualify for free prescriptions.The "exemption list" is very out of date. When the NHS was created in 1948 the government drew up a list of the conditions which at that time cost a lot of money to treat. Things such as asthma didn't have many treatments back then so they are not on the list even though thay cost a fortune now. The list has never been updated and personally I don't think it ever will be - it is more likely that it will be scrapped totally. But it certainly is unfair. I get 13 different prescription items every month, imagine what that would cost if I had to pay for each item individually.Actually I shouldn't moan as I guess it would cost a lot more if I was in the USA.Regarding the Midodrine, it is not licenced in the UK. GPs can prescribe drugs off licence (ie when they are licenced for one condition but they are being prescribed to treat a different condition), but as far as I know they can't prescribe drugs that aren't in the BNF (British National Formulary).My cardiologist prescribes mine on a hospital prescription and the hospital pharmacy order it in specially from Austria on a "named patient basis". I suspec you will need to find a friendly hospital consultant to prescribe it for you - I hope you have a small stock with you from the US? You may well end up with a baffled community pharmacist when you take the prescription in.Welcome to the UK. I promise you that we do have some days when it doesn't rain!Flop Quote
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