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Everything posted by mikv

  1. I believe I was mi sold this as being necessary to cover my cards against online fraud when I was already disabled at the time before I applied for it ( I've been disabled since 2003 ) am I correct in assuming this , and if so has any one else had success in claiming back for these protection schemes ? thanks folks, mike UPDATE* Forgot to mention they in spite of no filling out their renewal forms they have just taken the money out of my account any way , is that even legal ??
  2. Hi, Physio sounds more doable perhaps - what about osteopaths ? I was told I could get referral by one for that scan I mentioned and they might be more keyed up with some of my issues depending on who I can find. thanks again, mike
  3. Hi, I saw a specialist in the Mayo clinic back in 2002 before I got worse that diagnosed me with HMS / EDS ( this was in the US ) and have lot of history , signs that point towards it too. The problem is, there is no one trained in my area to recognize EDS, ( I checked with HMSA charity ) and In fact only 11 patients thus far Im aware of with EDS in Scotland itself. so the margins of any doctor diagnosing this here are beyond small - esp when they have no other patients with it . Whats evern worse too is the fact I believe I have subtype known as CSI that even more difficult to diagnose and in fact almost impossible without specific tests - one being sit up MRI that can take different angles / shots..which costs a cool £1400 minus the flight to london ( I cant tolerate vibrations from motors my joints are so weak ) Rather than try to argue with my GP I've been trying to find private one who might do a letter on the strength of my history , but Im having a real problem finding any who do phone consultations in Scotland , then again perhaps it doesnt matter where the GP is ? mikv
  4. I was yrs ago in 2003 ( by the top guy in the UK no less ) and accepted after he disagreed with my then GPs assessment and usual downplaying of my problems. It wasnt untill I requested my records however , that I found out about this - including many other things he and other Gps , had never disclosed to me over the yrs , some very relevant to what they claimed they could find no evidence of - namely this I made list of them as my final wall of defence if things get nasty, including personal remarks that were made about my family, how I spoke and my appearance that bore no relation at all to my problems , other than to provide some amusement it seems , or more opportunities to case me in a certain light.
  5. BTW is there any way to prove I've not been to my bank or made a cash withdrawl without showing " THEM " my statements ? I have list of cancelled dental appointments , and no renewed bus pass since I got worse , but thats it .
  6. I actually ended up writing a long explanation of recent events to ATOS , for the latest appointment I had to cancel , and now I need another break - more DIY to get back 2 Starryeyes below.. and all this on £60 mechanical cherry keyboard i bought that has actually made it easier for me type compared to how I was.
  7. she could but wouldnt he still want to see me ?
  8. I did , but i lost the receipt and the scanned image I took got lost thanks to my ext HD failing ( both of them ) . I've asked them to mail me the copy instead for evidence but they told me its too expensive to mail ( is that normal ? ) I plan to phone on skype tomorrow as last resort and record in case the GP refuses to send it - or maybe i should just pay courier to pick it up recorded again ? The letter the GP sent to ATOS was unbelievable considering the info I had given him was 10 pgs long , it was barely 2 sentences and just confirmed he had spoken to me and that was it .
  9. no , I didnt want the typical hassle / expenses trying to fight to get referrals to go private ( there is no way my local health board would pay it ) - nor did I see the point given there is still no cure / treatment . I have had such negative experiences and what IMO boarders on negligence or ill intent its becomes very emotional challenging for me whenever Im forced to deal with the NHS / GPs . after all its their incompetence that is a good part of the reason why I am crippled today.
  10. get back 2 u that hopefully tomorrow ( hands bad )
  11. I looked into it but i dont think it would help because of the nature of my issues and the fact its not actually that I cant talk , but rather I dont as result of its effects on me ( if that makes sense ) I mean what I believe I have is basically anomaly / subset of an already rare condition in EDS / HMS that was made worse by a fringe treatment I had in the US , that resulted in lesion in the very area there is no diagnostic scanning for. ( because it doesnt exist for even " regular EDS / HMS ) If I try to bring it up with Eds charity they usher me away because I frighten people . and you can only imagine the reaction from Gps.. so I actually have to pretend its far less worse than it is ( regular EDS / HMS ) otherwise no one would even listen to me. And worst of all is the fact its invisible illness so it is not even obvious without a way to measure / compare connective tissue.
  12. I have not worked since 98 for my folks business and have a history of deterioration before i became housebound which the GP should be aware of too, afterall Ive on incapacity and DLA later since then , so its not like this is all sudden , my early symptoms of eds / hms go back to when I was 16 and in fact even before then when they were first identified at age 4 ( something I found out myself by requesting my history ) as I was never told / nor given follow up assessments at the time. Communication is a problem for me if i cant talk without problems , much less type easily - if at all - what do they expect me to do ?
  13. thats not what I read .. see here
  14. I already told my gp i had only managed out once to the dentist since oct of 2010, since then I have not been in my bank , made withdrawl or spent anything locally other than a cheque I give to my folks for housing ( they own my flat ) and the things they pick up in store for me while their in town for their own shopping ( they live elsewhere ) I cant drive in lieu of my current issues ,and haven't renewed my bus pass since i last used it either. If you asked anyone in my building who I was , they wouldnt even know as no one ( other than a few kids i have to warn off my ramp from my window ) because I have not been out my door ( other than dental visit last year )
  15. Yup, I'm already waiting to hear from them as I speak. thanks, mike
  16. Maybe, I have asked them for a letter to confirm their statement , but Im just in two minds now to try and move on to another GP so I can get this letter they need rather than play piggy in the middle ( although i do still plan on writing to him to hear what he has to say ) I know my GPs practice does do home visits because they mention it on their site , so if not him then one of the others ( unless they mean emergency ) ?
  17. No, I was thinking of writing him a letter,or just ignoring him and trying to see someone else given ATOS's urgency for a letter..
  18. thanks HB, sorry about that , (( bad day )) thought it was my thread . mike
  19. Its not fear or pain , my joints are so bad ( part of my condition ) I literally cant tolerate most frequencies of motors without it destabilising my connective tissue which in turn makes things worse , in other words it is literally like I have no shock absorption at all to protect my joints / organs. I barely got by before using special foam 5" thick as seating , and now its worse , I dont know what to do , because its not only other movements ( like motors ) but own that affects it , whether it be trying to type or brushing my teeth.
  20. No support ( and for good reason ) too as my illness is rare and not officially recognised by all GPs ( only 9 % ) and thus has no way of being easily diagnosed , is wide open to abuse / negligence ( which is a good part of the reason I got this bad ) If you want know the details I can pm , but I do not trust going into here , because its symptoms are not common and therefore easily traced on search engines. I did have support worker but I got rid of her largely because if that negligence I mentioned and the fact her presence or visits never helped any way because there is no help or treatment for what I have other than " experimental treatments " or unofficial things Ive found that have helped.
  21. I have rare illness / disease that is not easily diagnosed nor accepted as existing by the majority of GPs in the uk ( although it is recognised / has a charity etc ), is there any way then it is possible to find out the number of patients a doctor has - or is currently treating for a specific illness or disease ? ( I like in pretty small town so this is why Im asking ) thanks, mike
  22. Not to throw a spanner in the mix , but I just found out a doctor can refuse home visits ( with no explanation ) too , so what happens then if the doctor uses this as his excuse not to visit the patient without bothering to tell ATOS or make it clear , isnt it just his word against mine, and even if it isnt , what difference does it make if he can act with impunity any way ? Also if surgery policies mention including home visits , does that change anything in this regard or make them more accountability , or is it more to do with some false sense of security or terminally ill scenarios ?
  23. Hi HoneyB, Thanks for the warm intro and welcome , your forum looks like a good place to stay informed so I will likely be here while Hopefully in time I can help some others too . thanks again, mike
  24. I recently had ATOS contact me, to tell me they have denied me a home visit because my of GP / ATOS requirements that I should of have a face - face to visit. The irony is , is that I did I ask him for a home visit but was refused without any reason and offered a phone appointment instead despite the fact he had never seen me ( i only registered a month before I got worse ) and was / still am housebound for some time. I had no idea at the time this wasn't considered appropriate as no one told me , and assumed it was fine because he was familiar with ATOS's rules and my medical history ( as I assumed most GPs are ) until ATOS told me otherwise 7 months later. During the phone consultation he surprisingly admitted not being familiar with ATOS's procedures ( although he had the info there but hadn't read it all ) so in response I reiterated what they had told me, just to make sure he knew , in addition to giving him their ph no and contact details . He concluded the consultation by telling me he was content do a letter for me based on what I had told him / history , and that he would phone up ATOS if required. After a month ATOS told me they still had not received a letter from him or a phone call , so I decided to write him a nice letter explaining this along with more input on my history and records backing it up to make life easier for him - still no reply or conformation so I was eventually forced to phone. When I did , I found out the letter had been done but was waiting to be collected , despite the fact he agreed to post it - because of my inability to travel. When I eventually did send the letter to ATOS , I not only had to do it once but three times , because they were apparently unable to find it in their system and even accused me of sending to the wrong address despite having recorded proof . Some 7 months later they miraculously find it - then hit me with this. We did receive a letter from your doctor , however the information was not accepted as he had copied on to us what you had told him. In the Healthcare professional's phone call to him recently, as he had not actually seen you to form his own opinion, he could not provide his own opinion to support your request for a home visit - it is insufficient evidence for a GP to copy on what their patient tells them without the GP being able to verify the information. If any one has any suggestions on how to proceed with this , and what course of action to take Id be interested to hear your replies. thanks, mike
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