Published on 12, July, 2020
They make the forms hard to fill in and benefit hard to get because of butt hurt Daily Fail readers who hate benefit claimants.
The whole “Dr letter/evidence” thing has heightening a load of anxiety and thoughts, now spinning thoughts and situations, did send them the original letter same as before but they didn’t contact a GP last time. Also like i said the Drs surgery isn’t one I have been to anyway, and haven’t spoke with medical people in years as they were so hit and. It’s, chose instead to speak with a support worker and my advocate. A GP situation would have been a very short appointment to talk about an in depth thing, and they would only have sent me to a mental health centre anyway as they did before
Now something didn’t expect
Gkt a letter this week saying an assessment is scheduled for a couple of weeks, so have contacted advocate about this.
But then today have had a letter from my doctors surgery saying that they have received a form from the DWP for a GP to complete. The issue with this is I have never been to that surgery or spoke with anyone there, the surgery changed a while back and was registered there, but the medical back and forth though diagnosis and consultants and bad information (long stories) was so hit and miss that once and award was originally made never went back to any medical centre anyway. This wasn’t a lazy thing, they had again changed consultant and never arranged another appointment. Instead I stayed close with my advocate and also spoke with a support worker who knows all the back story and has provided evidence (both have) and then attached the original diagnosis sheet.
This is comcerning and has cause a load more spinning thoughts to what was already a load right now. Can’t exactly go to a GP I don’t know and ask them to fill in a form in a certain way, from experience last time a load of doctors just don’t want to know.
Any thoughts?
Ok an update (not even sure when I last posted here)The advocate got in touch pretty soon after writing on here and spoke with her, she was great again and helped go through the form, adding evidence from the last time, original evidence from an autism support person I have spoken to over the past few years (who was also great and went into great detail) and then added some sentences herself. Sent the form off 31st of January (had to be there by the 14th). Its almost as if its a numb time where until this is sorted nothing can be done, which is kind of a contridiction as it’s not like things happen externally a lot, but there are obviously thoughts of things even if they don’t happen. Right now it’s all this, even had a freak out when I had what turned out to be an annual letter about ESA but got to wondering if it was saying it had all been processed, even ended up phoning the DWP over it which never like to do but just couldn’t settle. Obviously know that a lot of this is the condition itself (unti things are sorted mind just spins) but still it all feels like everything is “on hold”, concerns have had me literally using most money (you know it’s not exactly a lot anyway) on paying things in advance “in case”, which again is irrational I know but sometimes get to thinking how fragile this all is.Have distracted and self soothes with movies and video games which is something I did years ago with other situations, it’s again not something I have grown to do or feel I should really but it’s almost as if when you are thinking about it you are looking to process and when thoughts are on something else you are thinking you should be thinking about it incase you have to articulate! The advocate has said she will help with anything more again, same with the evidence provided but it never seems to settle thoughts, it never really did at any time anyway to be honest.
Evidence wise I have a few outlets but in terms of anything “medical” haven’t seen anyone since before the last assessment, mainly because there was so little understanding, long story short it was a locus doctor that actually got me evidence on paper back then.
Dont know the descriptor that was used to get the award but obviously it hasn’t changed,especially if it was dealing with change as this is showing! There isn’t really an “improved”, the catch 22 is that any mind improvements or perspectives are now actually fading because of being on this 24/7, then as stupid as it sounds it’s as if you feel you have to stay like this so you can remember things to say and how to express! Which isn’t healthy obviously.
what you say about newspaper reports etc might be 0.1% if these cases, shouldn’t mean there shouldn’t be a better way for diagnosed genuine cases. I don’t view this as a “disability” or “condition” day to day, I am me, but right now it’s as if I have to open up all old boxes in my mind to bring the dark out, which shouldn’t have to happen. Have concerns about the advocate who came with me last time not being able to or thinking “well he should have sorted things by now” or something. As well as a whole load of what ifs and thoughts. Really can’t throw away the “identity” I have built up through being in the right place and environment. Don’t get it wrong it’s not perfect and there are still issues day to day, but this is flaring them to an extreme.
I understand how you feel. The weekend, everything's on pause, the frustration, the stress, the waiting.
I agree with Former Member , use your previous ESA as a blueprint and beef it up. Also use any more recent evidence of problems. Because they may claim your evidence is old or out of date and you have improved since your last assessment.
The reason for these constant re-assessments is newspaper stories claiming to have uncovered scandals where a person claiming lifelong physical disability benefits is found to have recovered and now on holiday doing extreme sports at the taxpayers expense.
How do you get your previous ESA forms? I didn't make a copy of mine and my CPN filled it out for me.
Right now from a kind point of view feels like everything is “paused”, withdrawn and kicking out at tables and doors and jumping about (so stimming) a load more. Thoughts of woulda and coulds and what ifs and situations all filtering through. It’s only been a few days but right now (weekend), there is frustration that people haven’t either got back or responded yet, but that is just a frustration at the whole thing. Also it’s a weekend.
Thank you for your thoughts so far, feels like everything is closing in my mind, which then on top,of next to no sleep and that everyone I am contacting seems to be busy (understand this but is still frustrating) is having an effect, Even my dad caught me shaking earlier, stimming is a big part of things anyway but now has gone up a level, as well as becoming withdrawn. This was how things were every day until getting out of these situations and environments.
know I’ve probably mentioned before but is there a good way to get across when sending the form back that to deal with this on paper is better due to the knock on effect this is having? Would support somehow back this up?
You haven't gone back to how you were before, although I know that it can most certainly feel like that.
My support workers were having to remind me of this constantly as I was taking one step forward and what felt like three steps back.
I was forever feeling I was going backwards, but I wasn't really, I think it was just the fear of going back after I had worked so hard to get to where I was ~ which wasn't very far at all to most people, but to me, it was.
This really is temporary though and once you get through this period, you'll have a short recovery period then you'll be back to being better than ever before.
The DWP doesn't always read all the evidence provided, but I would just go with as much as you can, no matter where it's from.
My autism plus worker wrote out a pretty detailed report for me and the people on the pip appeal panel used that as a guide. I submitted it to the esa as well although I'm not sure how much notice they took of it but I took a copy with me to the face to face assessment, to help to remind me if I forgot what to say.
And yeah, you're probably over thinking with the advocate thing. She was just being supportive with what she was saying. But I understand the over thinking and it's going to be there until you're through this.
I know it's hard (or at least it is for me when I'm in this type of situation) but try and do as much self care, self soothing etc as you can while you're going through this.
Do you listen to meditations? Take long baths or go for walks? Anyway, whatever you do, you need to take extra good care of yourself just now and be extra kind, patient and loving with yourself and keep reminding yourself this is just temporary and it will be all over soon. Don't forget there's a cut off date as well to post the form and info back to them.
Right now am back to like u said, this had taken over all thoughts. Stimming and shaking and kicking, mind has also gone into “acting mode” which is constantly creating things to say or ways to express all of this, which then leads to burnout and fatigue. It’s been getting to an environment and situation where I haven’t had to do this, and could have my mind more in the here and now that has meant I could put any sort of life together and form an identity. Before then it was always this way, this is almost a flashback, and could never form any thoughts of what I wanted or liked, was just a feeling of having to get away. As soon as one heavy situation ended another would start. Always something changing or coming up externally. It’s back to this right now.
Thank you for your words there, you have perspective and this is exactly the kind of thing I am talking about, going through this now becomes a one track thing where I lose that perspective I have built because it all collapses in on itself the longer this goes on. Have grown and learned so much and to go into environments that aren’t right for me would be burning all of that. The ironic thing is having that perspective makes it more difficult to describe how things are, looking at those “descriptors” had forgotten all about the points and the terms and the severity, think the one that my advocate pointed out was the impact of change on stage of mind. Still haven’t looked at the old form.
The advocate situation concerns as well, can remember her saying things like “this won’t be forever” and “Hopefully you will never see me again” so don’t know if her first thoughts will be to wonder why nothing has changed, could just be overthinking it all now. Emailed her but haven’t had a reply yet, the charity is tough to get through to.
The councillor who I spoke with a while back seems to want to get into all the medical stuff before writing a support letter which again isn’t the way things are Wright now, am just looking for a letter saying the condition is a permanent thing and the effects this process could have on wellbeing. Anything else is medical stuff covered by the form I will be filling in.
Also have a third outlet which is an ex nurse (think they are a NLP coach now) who have spoken with for a while throughout the past couple of years and who knows the effect all this has and things iv said before. He would be happy to write a letter but do credentials matter? Does this have to be a DR or therepist?
Also have a Dr but was a private DR and the charges are high, obviously would do it if it is needed but it’s tough to get through to, she does have all he previous files though.
If it sounds like this is a load of people, it shows how concerned throughout the two years I have been with not having people around who I could call in in this exact situation to help, it’s almost as if your are scared of “forgetting” while also looking to grow away which is a mind blowing thing. Had many nights and times stimming and anxious and walking and kicking things simply through shear anxiety over what “could happen”.
Would it be better to have all different sources of evidence or one very detailed letter? From what I remember wording and terms are everything. Would looknto be very descriptive in the thinking it would be obvious a face to face assessment would bring on unnecessary anxieties and “traits”, but do understand what you have said
Yes, I would say so. Use the information you wrote on the last form, add or beef up where necessary, get as much supporting evidence as you can and highlight and stress how much of a detrimental effect a face to face assessment will have on your health and wellbeing and how you're worried because when you lose control you get suicidal thoughts etc.
And remember, the person who reads the form, doesn't know you, they've only got the information on the form to go on, so try and paint a clear a picture as possible.
However, you can't rule out the possibility that you may have to have a face to face assessment. Which I know from experience, can literally take over your life until it's over. It did for me. I have to plan and prepare weeks in advance, have the assessment and then recover, not to mention all the worry and stress thinking about what will happen etc. It's not an easy time, but the way I look at it, is at the end of the day, ultimately they're helping me and if they need to satisfy themselves that I meet the criteria, then so be it.
Just do your best, get all the support you can and stress how difficult this whole process is for you and try to focus your energy on a time in the future when this is all over and you have your money and you're now building on all the independence etc that you've built up so far. Enjoy day dreaming about how great it will feel when this is all over and you've got your routines back etc and you can feel good again.
Good luck with it. It won't be easy but once it's all over and you have the money, all this time will fade into the background as you move forward even more and build on all you've achieved so far. Well done for doing so well and getting your life on a better footing. Best wishes. X
Obipviously recognise how things are with this process, but would want really for it to be sorted on paper due to the effect of going through all of this, traits and symptoms have heightened already and the cloud will stay over until this is sorted.It is very hard to describe how things are as it’s not like you spend all day looking to flare them, you can almost take for granted things that are just a part of your day.
Have made some calls today, have an advocate who hasn’t yet got back to me, and a councillor who seems to hint at wanting to “work with me for some appointments” before writing anything, which isn’t really what I am after, just looking for a supporting letter about the condition and the fact it is lifelong, things are the same, and that going through this would be damaging to mindset and cause anxiety uneccesarily. Am not looking for her to get into the ins and outs of the condition, have already been assessed and diagnosed.
There is another person who said they will support too, in terms of DRs though, they were that hit and miss for the original assessment and that amateur in their understanding I haven’t been back to any medical thing since and have dealt with this on my own using outlets if I have wanted to speak with someone (usually about the heavy anxiety I have had about ever being reassessed!)
Would the best thing be to use the old form (maybe adding if necessary) and then putting all the supporting evidence I can get with it, stating that it would be better to do a paper assessment due to the affects? Or would it just be passed over to being face to face anyway?
Thanks for your thoughts
The part about things being environmentally dependant is exactly right, right now thing are on my terms as such which means then I have been able to grow and form an I’d etity in a lot of ways. Don’t get it wrong, there are still issues day to day, but to go into other environments as before would be to set fire to everything I have built mentally,
Yeah, I’d go with the old form as well, like NAS39248 said.
I think what I’m hearing you say, which I can relate to, is that some of the ‘symptoms’ (for want of a better word) may appear to have improved, because of a change in environment. However, if you’re like me, I’m still very much in a transition stage as my new found awareness isn’t yet fully established in me so the slightest thing can put me back to where I was before.
Go with that old form and if anything, beef it up. I’m rubbish at the assessments, as I’m too honest and take things too literally so the guy who helped me said you have to fill it in as if this was your worst day ever.
Good luck. I know what it’s like. My life kind of goes on hold till I’ve got these things sorted out. I’m just waiting the outcome of my esa face to face assessment. Fingers crossed for both of us, but I would definitely go with the old form because like you said, it’s a life long condition and that one worked last time. And if you could get a psychiatrist or doctor to put that in writing, about it being a lifelong condition, it might help, but not necessarily because even though it’s a life long condition it might not always effect us in the same way.
I would look at the old form if your answers are the same use them if you have got worse in some areas explain how it affects you now, then use the old form as supporting evidence that you are and have been having problems for a longtime and that certain situations have gotten worse.
This is what I did with my pip admittedly I am arguing about physical problems as they completely dismissed my anxiety
Hi People
Just going to type and see where things go, have received an ESA form today, have been on ESA support group for just under two years now. Had no idea today was the day but the concern has affected me throughout the whole time tbh, always a cloud thinking “what ifs” or imagined situations or comments.I am diagnosed as Asperger/High functioning autism, with co morbids of Trauma, ADHD, and OCD (stimming). Was late diagnosed so for most of my life had no idea of any of this, aoart from the obvious feeling that things weren’t right in the environments that I was in. Was granted ESA support group after going through the process of advocates and phone calls and good people and not so good people and Drs and Consultants etc etc, which had a big affect on the traits and symptoms associated with this “condition”. Getting to environment where I am away from environments that aren’t good for me has meant that I have learned and grown so much and for the first time put together some kind of identity and perspective, though day to day things aren’t “better”, I have to time and space to deal with them.Had heard something about the idea that if a condition is a “lifelong” condition, that there should be less of an assessment process due to the knock on effects, until this is sorted it will now have a big impact on state of mind and thinking, and would be good to avoid that as much as possible, things haven’t changed it’s just the fact that I have my own space to shape my day. Another concern as stupid as it may sound is the idea of “forgetting” how things are because I’m not in a situation right now that exacerbated them (though going through this will actually bring a lot of them to the forefront). Is this idea something worth looking into, as there should be enough information on the form (and some people to provide evidence) to say that this is a condition that won’t change and there isn’t any good reason to add pressures??The esa form I filled in a few years ago I made a duplicate copy of, so the information is still right there, though have never looked at it since. Would copying that onto the new form be a good idea, or would it be better to think from a fresh mind? This was a form that got the result it was supposed to (support group) so as someone said to me today it would take a valid reason to change that sitatuion tbh?The concern as it has been throughout these days and months, has been the fact that there are good people who have understanding, and ones who just don’t or see it as a stereotype. Can only speak for myself but things can be less apparent than is always shown I guess, so holding a conversation doesn’t necessarily show the burnout or fatigue after, or being in a bad environment doesn’t always show the meltdown or the withdrawal that comes with it. It was only getting away from those situations that I realised how depressed and closed in my mind had been for my entire life until this point, I knew no different so just went along with what everyone around me was doing. The term is known as “masking”, which then has a big effect on the other side of things.Any thoughts or information would be really appreciated, haven’t stopped today since getting this letter, so the comedown soon is going to be big and filled with dark or uncomfortable thoughts, anything said from experience is valued. Thank you