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About cameronjcw

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  1. Heya just wanted to say thanks for the advice! I called them last Thursday cause I was really still ill and the guy was actually ok and done the interview over the phone, he said that the soonest they will need to see me again is September then I will have to come in to the office for the next appt but its certainly a big weight off my mind. Thanks again for the advice and info I might have a look at that site although I have a lot of friends with EDS via facebook and lots of us have similar issues because of the lack of recognition, information, research and understanding about EDS. It
  2. Thanks for the info. Im such an idiot I just looked and its not tomorrow its thursday. I swear I get so mixed up everyday with everything. My memorys going and my speech is getting worse, not my speech its hard to explain whenever I want to sayu things they come out the wrong way. Aphasia I think?
  3. Im so confused. I had a medical back in January which I failed and appealed against a week or two ago I got a letter saying the appeal had went ahead and that it was in my favour and I am in the work support group. I wasnt told there was an appeal date set and the welfare place thats meant to be representing me as far as I know werent informed either. I have been put on the higher rate of ESA now finally and Im meant to have an interview on Tuesday this week but I feel ill. I havent been out of the house for over a month and I have a few abcesses and stuff on top of having Ehlers
  4. Well done!! I finally seem to be getting somewhere, put in a complaint and then escalated it, also managed to get my local MP to complain on my behalf too and things finally seem to be moving and I have one fully named contact who is dealing with everything for me, my doctors letter and everything apparently went missing but I don't need to go to my local job centre again, basically after the **** I had to put up with in the couple of visits I did have to there I refused to go there again and also complained about the way the staff treated me. I wont be withdrawing my complaint though just be
  5. No idea to be honest I think they just make up titles as they go along!
  6. Myself and a couple of other people with experience of this and other rare conditions are working together to start a charity to help people with rare conditions access better medical, social and welfare advice and help. The main site should be up and running in 2-3 days at the very most and we have lots of other plans to bring all the other smaller organizations in that deal wtih these and other rare conditions. I will obviously run the link by site admin here before I post it but really excited about it and we all hope its going to help in a lot of ways, too much to write about at the mome
  7. Just a little bit of info some in this situation may find useful. If you have been kicked off ESA and have an appeal in but not recieving ESA because of whatever reasons while your appeal is in. You CAN submit a fresh application while your appeal is in. You have to go to your doctor and get another fit note and if your doctor can list another condition or health problem aside from the one you have already had on all previous fit notes, you can then submit this as a fresh claim. I cannot guarantee that this will work BUT this was the manager in the local Job Centre who told me this
  8. Bi Polar Bear I really wish I could give you some kind of help or advice. Are you still receiving your benefits currently?? Im still getting messed around feels likie y, the last straw for me too today. Please hang in there if you send me a PM Theres a woman I know who might be able to put you in touch with someone who could help. My brain is fried with all this crap todaym feel like Im gonna throw up or pass out or both.
  9. Thanks for that information its really useful with this case. Just goes to show how corrupt the system is! Makes me soo angry!!
  10. Absolutely not!! You should appeal and state the reasons for the appeal!! Im teh same with that too Im entitled to a months backdated monmey which I was told at the start I would get back as it isnt my fault all this has happened, Ive done everything in my power to sort this. They told me last week that it was down to someone else to decide if I get it or not, theres no way Im not taking it further at all. Ill go as far as I have to to get what Im entitled to. I worked my backside off doing care work legitimately for years I should be entitled to help for me and for my daughter both with be
  11. U see this is where the problem lies they should give you reason and you should get it in writing. They basically done my appeal without getting proper information even though I sent in doctors letter and also regular so called "fit" notes with my condition on it! I was only told yesterday that I can in fact although I have an appeal going to tribunal, apply for ESA again if my doctor will list a different or additional illness/condition on a so called "fit" note. Now wether this is accurate or not I have no idea and tbh I wont hold my breath because it wouldnt be the first time I have
  12. Just a quick bump, not forgotten about this. The woman Im in contact with is already raising an action for things like this, once I get more info I will post it!
  13. lol isnt this lovely virtual one good enough
  14. Yeah I do see your point but at the same time the way these people treat people with disabilites is utterly sickening. I mean where in the job description does it say that you are to intentionally lie to people and basically degrade them. My own personal experiences have all been negative and quite a lot of it is nothing to do with what these people are employed to do!! I know not all of them are like that I have a few friends who work in the system myself and even they are disgusted the way people are being treated. I worked as a care worker in a few different areas such as supported e
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