I'm sure this subject has been discussed to death, for that I can only apologise.
For a couple of years now, doing a little research on my own, I think that I may have what a Work Psychologist I saw 01/2012 called a neuro diverse condition. I thought it might be Aspergers, it might be ADD possibly Dyspraxia. I'm by no means an expert nor a diagonistician. I could be completely wrong and, as i suspect my GP thinks (but doesn't say), lazy!
When I first saw the Work Psychologist (a dwp person, i don't know much about the specific role as I'd never heard of them before) I was on JSA. Since then I started on the Work Programme which I am still on. She claimed she could test for Aspergers but relented to saying she could do some kind of test to see if I might have ADD. I realise that makes no sense, but it involved answering a load of puzzles like remembering number sequences backwards and spotting patterns and stuff. From what I could understand she said it was highly likely. I have yet to get an official diagnosis as such facilities are not local to me and I find travelling around cities rather scary. There is now a chance the local CMHT might do one.
However the Work Programme treated me badly. They ignored the information regarding my mental health (even though no formal diagnosis) and refused to accept even the possibility of such problems - of any kind. I was told that without a support worker present they wouldn't countenance any such possibility. I made a complaint and have since changed advisers. Though the replacement is better they still admit they can't do anything. Basically the WP is rubbish. I was told that the main problem was because I was on JSA and that I should claim ESA.
To cut a long and predictable story short that's what I did, six months later I have, unsurprisingly, failed the WCA. I've sent the GL24 form back to lodge an appeal. I'm not sure how that will work but I'm told that doing so reinstates my benefit until such time as they decide whether to change their mind (I doubt it, let's be honest). In the meantime I have to persuade my GP I need help.
I suppose my point in posting is just to hear what other people think. I haven't found my GP to be terribly helpful or sympathetic and the system certainly isn't. ESA should be employment support, but it seems to work on the basis that, in order to get into the WRAG (my stated goal, i don't claim to be deserving of the support group) you need to also qualify for the support group. This doesn't make much sense to me. As a result I feel guilty as if I'm swinging the lead. But on the other hand, I just can't cope with the DWP. I find life difficult and I find dealing with society at times very hard. All the stuff you've heard before no doubt.
I can't say for certain I'm an aspie/add/whatever, so I could be wrong. But just trying to get support and be taken seriously is horrendous. It's enough to make you ill even if you aren't. If anyone has any advice I'd be grateful, thanks.
The CAB wrote to the GP with that list. GP says she can't agree to what's on that list because she can't verify it. I don't see how she could anyway. I've been thorugh this with her about three times. I've already changed doctors (not for this reason either, but because it's next to impossible to consistently get appointments). I still don't have a diagnosis for aspergers; according to the service I'm looking at at elast 6 months to a year.
What would really help would be the CAB explaining directly to the GP, but of course they won't do that.
What about the CAB providing you a list/explanation on their headed paper for you to provide to your GP. Your GP can always explain on the questions she is really unable to answer "unable to comment as without specific information on that" or something.
There is always the option to change GPs. Ask around for an ASD-friendly one (which is a rarity I know as I've never heard of one, but you might get lucky).
Call the NAS helpline, if you get the right operator you might get lucky although in my personal experience when my daughter was pre-diagnosis they refused to help.
Just had another GP appointment. I don't think I'm going to get from her what the CAB tell me is needed for my appeal. I can't keep asking. So it looks like pot luck as to whether i'll pass the tribunal. Without that specific evidence, according to the CAB, I don't stand a chance. I do wonder if they are being a bit too specific in what they ask. No GP is going to sign off on what they can't themselves verify. I did ask to be put in touch with someone that can verify, but that's not an option it seems.
It's a lost cause dealing with GP's, it seems. They just don't understand. In fact they tell me that I have a lot of 'wherewithall' - in other words, I know my own mind. That feels to me like being accused of being lazy. They don't understand the way things work in the benefit system nor how the politics of the day are bearing down on people. Instead it is put to me that I'm somehow being 'entitled', which is a word that has become very negative: it means that I see myself as deserving of things others can't have or can't afford without earning them. Yet I'm on the Work Programme which has done precisely nothing (i haven't even speoken to them since May). Support it seems is a dirty word.
I don't really know where else I can go. I'm being judged on the spot and not in the round. The doctor doesn't know my entire life history or how it really feels struggling to cope in a world where I feel completely out of place all the time. All they say is someone who can string a sentence togther, isn't flinging his poo at the walls, and knows his own mind. Instead I'm treated to blanket statements about work and its transformative qualities despite trying to explain the current mess the welfare system and the labour market are in.
I'm not even sure I care anymore. I'm sure I'll be back on the dole in short order and having to deal with yet more people with no real understanding and no capacity or even desire to do so.
I spoke to the admin person at the mental health place yesterday and she confirmed that the GP hadn't actually referred me. Apparently the GP had written to a Primary Care place (can't remember the name) who responded, accordign to the admin person, by saying the GP should go back and re refer me. Yet when I spoke to the GP on friday she said none of this and gave me the number and told me to chase it up. If I haven't even been referred then it's going to take even longer!
Don't pin all your hopes on the CAB though, you might be lucky, but I had a MIND advocate liaising with my surgery regarding reasonable adjustments and the surgery still refused. I even involved Healthwatch and they are still not budging.
PALS frankly are useless. I have heard of one person who got their complaint upheld and compensation for expenses they incurred due to a crap CAMHS system failing to diagnose their child, but my experience with PALS was awful.
Prepare for your assessment as much as you can, if you can get parental input ensure you have it. If there is no access to parents for whatever reason, try to find someone who knew you as a child who can remember your behaviours. Otherwise, you will have to go on what you remember. It's not impossible to get a diagnosis without childhood history but some clinicians are reluctant. Look at the triad of impairments and make notes of how you believe you fit them. If you have any mental health reports which mention obsessive behaviours, OCD, difficulties in communication or anything relevant they will help. If you come into enough money to get a private assessment you could go for one of those and have the results in time for your tribunal. They cost upwards of £600 though.
Doctors frequently get impatient and terse with patients because they are on a time limit, have a stressful job and simply don't understand conditions like autism or mental health. Many can be condescending too, as they don't like being told by a patient that they have researched their condition and know what it is and they therefore will try to put you in your place. Doctors also don't get paid to understand the benefits system, and then there is always personality which is added to the mix.
Indeed. Unfortunately for them (and more so for me) I think GP's will have to start understanding the system given how it's (not) working. That's just how bad things are. Lots of support places now find themselves having to deal with this and help with appeals and claims. They perhaps shouldn't have to and didn't before, but that's how bad it's gotten.
Of course not understanding a condition isn't helped by not having a diagnosis and it's this I think she is relying on, perhaps even fobbing me off with. I can't prove I have any such condition until I can get a diagnosis, and there's of course a chance they might not find anything wrong with me in that sense.
[quote]...the mental health partnership involved to chase up the appointment (she made 2 months ago). Unfortunately there seems to be a huge waiting list for about a year. No tribunal is going to wait a year[/quote]
I tried explaining that (before contacting the mental heatlh ppl) that I could get to tribunal before I'm seen for a diagnosis and that if I fail the tribunal then that's it.
I don't think I did misunderstand, what you said above means that your assessment wait is affecting you getting benefits, therefore you need to write to them telling you that your tribunal is going to be severely impacted as you won't have a diagnosis by then, and therefore your benefits will be cut. Copy that to the tribunal people/DWP.
I still think you should spell out clearly in writing to your GP what the situation is and ask for her response in writing. Face-to-face is a lot harder and in writing you have proof and it's harder for them to ignore. You can always then complain to the practice manager or NHS PALS with copies of your written evidence.
Yes I understand you now. I suppose I could try, though I don't think it's going to make any difference. The person I spoke to was helpful adn they are trying to set up an assessment service closer to home, which is great. However this seems to be the problem. It's also not helped, I suspect, by NHS cuts and service changes.
As for the GP. I really don't know. I'm goign to see what the CAB has to say. I doubt they would, but if they could directly explain to the GP that would really help. I suspect they would pay more attention to them asking because of who they are, compared to me, as merely the patient.
I've complained to PALS before. Our practice manager, IMO, simply hasn't a clue. We are merged with another surgery and we are getting the rough end fo the stick IMO. I've had to see several different doctors over the years abotu this. They don't like that, I can tell, but I have no choice.
It seems I am failing to explain myself. That's part of my overall problem: unfortunately these failings are not seen as part of the problem, they are just seen as laziness or ineptitude or whatever. It's like I'm speaking a different language sometimes.
The written word can be tricky for anyone, you have things in your mind that you can forget the reader didn't know or something and anyone can do this, it doesn't mean your communication is bad.
Doctors frequently get impatient and terse with patients because they are on a time limit, have a stressful job and simply don't understand conditions like autism or mental health. Many can be condescending too, as they don't like being told by a patient that they have researched their condition and know what it is and they therefore will try to put you in your place. Doctors also don't get paid to understand the benefits system, and then there is always personality which is added to the mix.
Don't assume the worst, I know it's a struggle and it does feel as if the whole system is against you (believe me I have and am experiencing that myself) but you need to take proactive steps to try to resolve it where you can - hence my advice above. It's up to you whether you take that advice, but having things in writing makes things more official and can be backtracked and copied to relevant agencies as proof.
...the mental health partnership involved to chase up the appointment (she made 2 months ago). Unfortunately there seems to be a huge waiting list for about a year. No tribunal is going to wait a year
I tried explaining that (before contacting the mental heatlh ppl) that I could get to tribunal before I'm seen for a diagnosis and that if I fail the tribunal then that's it.
I don't think I did misunderstand, what you said above means that your assessment wait is affecting you getting benefits, therefore you need to write to them telling you that your tribunal is going to be severely impacted as you won't have a diagnosis by then, and therefore your benefits will be cut. Copy that to the tribunal people/DWP.
I still think you should spell out clearly in writing to your GP what the situation is and ask for her response in writing. Face-to-face is a lot harder and in writing you have proof and it's harder for them to ignore. You can always then complain to the practice manager or NHS PALS with copies of your written evidence.
I have tried my best. Unfortunately she has a tendency not to let me talk or listen - really listen - to what I'm saying. All that ends up happening is I try and explain several times which just ends up bordering on antagonism. I don't want an argument and it's very difficult getting an appointment (the surgery keeps mucking about with the assignment of gp's).
I think you might have misunderstood me. The assessment service aren't affecting my benefits yet. The problem is that the CAB need my GP to write a letter underlining the specifics of my issues as per the descriptors. They have written with exactly that to the GP, all she has to do is more or less copy and paste that! But she says she can't verify those conditions, not at least until i can have a diagnosis for aspergers/add/whatever. That's not going to happen for a year.
It seems I am failing to explain myself. That's part of my overall problem: unfortunately these failings are not seen as part of the problem, they are jsut seen as laziness or ineptitude or whatever. It's like i'm speaking a different lagnuage sometimes.
I had a telephone appointment with my GP yesterday after the CAB wrote to me with what the GP had actually sent, most of which misses the point entirely.
I don't understand how someone in such a learned position can so readily miss the point. I tried to explain why the CAB are so specific, but she just brushes it off. I can understand that a GP might not feel it's appropriate for them to write a letter in support. My GP tells me she can't herself verify the specifics I gave to the CAB (as per the WCA descriptors), but when I asked her how I would ever be able to get those things verified she had no answer. These sorts of conditions just fall through the cracks.
She agreed that, if I got a diagnosis for aspergers/add/whatever she'd rethink her position more positively and gave me the number for the mental health partnership involved to chase up the appointment (she made 2 months ago). Unfortunately there seems to be a huge waiting list for about a year. No tribunal is going to wait a year and she doesn't realise that's going to be how long I have to wait.
In her own, not particularly helpful way, she is trying to be supportive, but the problem is the ignorance that doctors seem almost willing to have about this process. They just don't get it and don't seem to want to know either. I tried explaining that (before contacting the mental heatlh ppl) that I could get to tribunal before I'm seen for a diagnosis and that if I fail the tribunal then that's it. No more ESA. But she was adamant that, as a GP, she could somehow overturn this and told me not to worry. However even if that's true surely it would be easier for her to just write the letter the CAB want rather than wait for a failed tribunal and then act - which i suspect will be too late. There are no higher levels of appeal. That's it.
It is ironic that, in seekign help and support via ESA, you are brushed off and ignored by the people who then complain about it but offer nothing. They seem to want to remain ignorant even at the expense of the patient.
It is simply how, I suspect, mental health is regarded. Had I turned up with a missing arm it would be obvious what the problem was. GP's aren't interested in mental health because it's difficult. So without a diagnosis to work with they are stumped. I'm still waiting for the opportunity for a diagnosis.
I have no idea what she has written; it may well be helpful. It may not. She wrote directly to the CAB and I haven't heard back from them.
As I feared the GP isn't happy writing a letter/report that expliclty and specifically underwrites the descriptors as disussed with the CAB.
She has written something, I'm not sure what because she couldn't show me and had already sent it to the CAB before my appoint with her. But she says that she can't 'verify' the issues in question.
So mental health has a particular issue here. What my GP wants is (i suspect) for me to have a diagnosis and then she can feel more confident about such verification. But ESA doesn't work like that. It doesn't matter what diagnosis you have. What matters is how you function, specifically in respect to the descriptors. If your diagnosis is 'has aspergers' that means nothing. But my GP tells me she can't verify exactly how these issues - and i'm still waiting to get an appointment for a diagnosis - affect me. Obviously she feels that she cant just agree with what i've told the CAB.
I've not seen any stats on wether people that attend alone are any more or less likely to win their appeals, so I won't comment on that.
However, I do know that you're significantly more likely to win if you do the hearing than if you don't.
Also, you say "it pays to anticipate the worst with the DWP", and I'd agree with you on that, but it's important to remember that it's not the DWP that conduct the appeal hearing, appeals are conducted by an independent body, precisely so that any bias that exists in the DWP's assesment process is not present in the appeal.
I'm not ignoring what you've said. I'm just trying to be realistic.
I'm not even sure I have anyone that can accompany me to the tribunal and so that will count against me: he's independently capabnle of attending the hearing.
I don't know what will happen at the tribunal ultimately, but IME it pays to anticipate the worst with the DWP.
