I have a diagnosis of asperges (high functioning). I'm 27, intelligent, capable, pretty good at most things. I hate the label but do have associated traits.
Anyway my GP practice are terrible. They know me by name and hang up on me. My medical records are largely inaccurate with the incorrect diagnosis on majority of pages. They continously break the Data Protection Act but my experience was the information commissioner doesn't want to know (both government departments). They actually almost killed me as a child. They kept telling me I was fine & that I I worry unnecessarily because I have asperges but privately they found a hernia on the first scan and fixed it. So I'm not delusional but this is how I am treated by the doctor.
I bought a car and taxed it with the new keeper supplement. Because the seller didn't send the v5 off I got no tax reminder and car was on the road. I got a sticker on the car saying no tax so I called Dvla. They said it's not my fault, just pay £20 for new logbook and tax it. Anyway I taxed it but still got taken to court and charged. (pleaded guilty by post with mitigating circumstances, explaining I did not intend to not pay tax and would of had I been reminded, explaining seller didn't transfer my details. Anyway I got charged guilty and fined
Then at the PIP assessment recently (it's at tribunal). The pip assessor didn't type what I said. It was substantially minimised. There are pages with answers that I don't remember being asked and the answers are not mine (I like chatting on the phone etc, i really don't) Then the decision maker states my pip decision was made by looking at the evidence such as the the muscle-skeleton assessment but when I refer to the assessment it says clearly 'not assessed'
I'm basically fed up this treatment. I find people are nice but the government isn't and I'm really struggling. My parents are old and when they go I don't think I'll manage. I just get pushed around by government.... Everyone else doesn't do this... Only people who have access to my files or I've already said I have asperges.. Is anyone else treated this way?
Yes and yes!
In clinic for my Son one day my husband told the paed that he (my husband) was being assessed for Aspergers. She put that in my Son’s clinic notes and sent it out everywhere including my Son’s nursery! Not even just other medical professionals.
When I was younger I had a mental health assessment for chronic anxiety and was told that I had a lot of Aspergers symptoms but (at that time) “we find it hard to diagnose women but not really a chance in an adult female”. Anyway that’s all documented and like you I get treated like I’m bonkers. Not to mention paranoid. It’s awful.
Yeah it is awful. I thought maybe its just me seems its not! Do you find people to be nice?Because I do, it's only PIP, Magistates Court, & NHS that are bad I've found
I've never had any problems, I have Asperger's (or higher functioning autism under the reclassification) and I've never been treated differently because of my diagnosis.
I've never tried to claim PIP, but to be fair there is no basis that my Asperger's could be used as justification for it. Now I think that the current PIP assessments are a joke, they are badly designed and even worse in their implementation, but I don't meet any of the scoring criteria and they should not be redesigned so that I do. They should however be redesigned so that they work properly for those in genuine need.
The issue with your car tax is that you broke the law, sure the other person didn't send off their part and you didn't get the reminder but the old adage "ignorance is no excuse", holds true. You are legally required to tax your vehicle or declare it SORN, the £20 for the new documentation was to allow you to do this but you also should have known when your tax expired, you can check online if you are unsure and you didn't do what you were legally obliged to so you were prosecuted and fined. You may feel the law is unfair but it applies to us all equally, it has to because applying to all equally is the very nature of fairness.
The problem with your GP seems difficult, I've never known the ICO not be bothered about data breaches but I've only ever dealt with them in a corporate environment. I'm not however sure it's totally within their remit as it could well come under professional standards, medical confidentiality is I believe governed by the GMC. If your medical records are inaccurate you can write and ask for them to be amended, they will then either be amended or you should get a letter back explaining why they believe they are accurate and telling you how to take the matter further if you disagree. You can't however have things removed from them on a whim, so if you disagree with a diagnosis that's not enough, you have to challenge the diagnosis and show that the original was incorrect rather than just say you don't want it on the record.
If the GP practice are hanging up on you as soon as they hear you then you need to submit a formal complaint. If this is a genuine issue without good reason (eg they are entitled to hang up if you are rude or abusive) then Citizens Advice will be able to help, they will probably also advise changing your GP.
MattBucks you are a legend for your answer! I signed up on here in a really emotional state but your response has given me clarity where there was none! Thank you for explaining and giving me a process to follow. I'm glad you are treated well, it's extremely reassuring that my experience isn't common & I agree with the PIP assessment points. I've never personally wanted to claim it but my parents have been ultra pushy.... With the car tax problem you have explained that clearly. Just two questions........ I was told verbally that it wasn't my fault by the DVLA prior to DVLA taking me to court; does that make any difference? Also, to be precise the paperwork trail shows that the vehicle became mine legally on the 28th of April 2017. I taxed the vehicle on the 28th of April 2017 and the fine is for, 28th of April 2017 so technically being picky the vehicle was taxed the day I offended (& prior because the tax is for the month).I think it is very different with the ICO dealing with another public body, certainly they were not interested. With the GP practice I've been collecting evidence for some time. It is very clear and obvious. I'll move to another and speak to the Citizens Advice as you've recommended.Thank you for your support! I've felt lost and stuck for so long that it's really destroyed me. I can't say how much this clarity has helped.
Thanks for your message, I'm glad you see it as clarity, I know I can be "blunt" (it's my comment on the antisocial thread, I'm very matter of fact).
You have to look at PIP in a certain way, do you meet the criteria or not? If you do meet them then you should push for it, if you don't think you do then it's got to be your choice. The concept is that it should help cover the additional costs of what it's awarded for so those who meet the requirements should receive it. I don't but I know I'm at the higher functioning end of things, I've also seen the friend of a friend be turned down for PIP and he's paralysed below the waist. He went from nothing to awarded the higher level at appeal so it shows how wrong they can get things.
I don't think them saying anything verbally means much, even less sonic you don't have a recording of it. That being said those dates don't make sense as they appear to have find you for not taxing a vehicle on a day the vehicle was taxed. Without looking at their reasoning in detail which should be on the court documents it's hard to tell. Citizens Advice would be able to help looking at the specifics though.
I deal with the ICO in a business environment where they are very strict and have to meet all their requirements or the penalties could be quite severe, but a bit of a Google seems to indicate that it's either partially or fully not under their remit when it comes to medical information. If you're not happy then I'd always recommend changing, you won't change themselves you won't change your feelings about them so someone with a fresh start will be better.
In most cases Citizens Advice are great, you can email, phone or have face to face meetings. You virtually always need to book in advance and there can be a week or two wait sometimes as they are very busy and understaffed but they will do their best to help.
I haven't seen many of your posts but to me you seem very social. I don't find your response blunt at all. It's helpful You have gone into depth and detail, which has helped me understand. You have shown empathy "care" by taking time to assist me. I really appreciate this.
With PIP I have heard stories like your friends friend. I see this as dreadful and it makes me feel that the government is victimising those that are disabled. I personally do not believe the PIP is for asperges at all, perhaps extreme cases but the question are not that relevant however, I would understand if I was declined but I am not happy that the assessor interpretated my responses so differently. This is why I am upset about the process & feeling victimised. The responses and behaviour are simply not me. I feel very misinterpreted.
With the car tax, I never had any explanation. I was just found guilty. Hence I feel like they did not acknowledge or read my two page detailed letter explaining circumstances. Hence again, feeling victimised.
I think you are very right about changing doctors. I will do this Monday but more than anything I want an apology for the way I am treated. It's a huge factor to my overall feeling that I am being significantly discrimated against by certain public departments. Interestingly I do not feel this way when dealing with private sector services otherwise I would think it is me.
I'll go to Citizens Advice when I feel ready. It's very exhausting to have so many things going on at once.
Totally over analysing this (I'm fascinated by human behaviour), you choose to offer advice which is what I needed & you provided the best possible response to help me.
However reading back my only question was about other people experiences. I didn't say I wanted advice (obviously this 'advice' is the best response).
Alternative responses could of been, 1) sympathy like I'm sorry to hear that (I do this personally, to express that I care about there experiences) but always add depth to the response as well, 2) directly answering my question about how we feel treated 3) The best possible answer (based on your knowledge, which the other responder may not of had) & I've not had to separate information or fact from a sympathetic response (pointless response).
So, I would not say you are blunt. I feel responses from NT such as "I'm sorry", conversation goes to a new topic.. So basically, sympathy without suggestion to be blunt. This is NT people in my life lol
I really believe the mind believes what it is told irrespective of how you are, you only become more of the person that is described. Especially when the other person has influence....
Can I ask a personal question... Do people ever ask you about asperges? I never say but it's noticed by others. Thanks
The reason I ask is because, I really like being understood. We are all different (every person in the world) but I'm thinking other people with asperges understand me better
I also agree with Matt's advice and I'm glad he's helped you to see things a bit more clearly. The media, as well as forums, are incredibly prejudiced against the government and rarely highlight the positive stories to balance out the negative. Due to this, I've found many people get caught up in the 'oh the government are awful' cycle when actually it's actually themselves who've made a mistake. I've applied for PIP twice (initial application and renewal) and I've been awarded enhanced rate both times. I believe the key to this was handing in independent evidence to back up the points I made. For example, a OH referral ref documents how I go to the toilets to make myself sick when I'm overstressed - this shows I struggle with nutrition. I also suffer from visual stress so can't read without the aid of a screen filter or overlay, to prove this I handed in an A2W report.
NAS24859 Sorry but I find your comments terribly offensive. Many disabled people have suffered at the hands of this government. I have seen a 31% reduction in income since 2015 despite my condition neither improving or getting worse. Lots of disabled people are in a similar position. It seems to me wrong that how well you do with PIP is how well you can put over your claim or how well someone puts it over for you rather than your level of disability.
That results in people who are more well than another person but able to plan their claims like military campaigns ending doing better than that person under PIP. To any decent and fair minded person that has to be wrong.
If this is going to be a pro government abuse of the disabled site then I will have to leave as I find such beliefs unconscionable and triggering .
MrRobot said:Can I ask a personal question... Do people ever ask you about asperges? I never say but it's noticed by others.
Sometimes, but it's rare. I've been asked by some people who knew I had Asperger's and their children had either been diagnosed or were in the process of being diagnosed with ASD. I think some people are genuinely curious as well, I've been asked (in a non-offensive way) if I was "a bit like Rainman", I've been asked if I can count cards (I can to extent), hack the FBI (I can't) etc.
I might seem normal in many ways, I run my own business, I have a house, a car, I go out with friends (Although a very small friendship group), I travel (although I do find myself uncomfortable if away for too long, but I can manage that) and sometimes people don't realise that it's a wide spectrum.