Can someone please help me with this. Walk me through it.
Context:
Twice I had a call from capita. twice i got frustrated, wound up and highly upset, and in a very volatile mood way which resulted in them terminating call.
As a result, I Couldn't function as well as i normally would which as anyone who has tbi and gone through this, can understand. call it a really bad couple of days.
Thankfully I'm on my own - but i pity the poor neighbours for day or so after as was in right foul mood. though i did apologise to neighbours after few days by way of card and chocs.
Today, I got a letter stating not edible for PIP. because I didn't fully take part and not a good enough reason.
I'm still waiting to hear Capita response to my complaint.
Am i being an a-hole to think that if I cannot function because some one has thrown my head for a spin, that i could take part in anything or give a good reason..
my question is what can I now do ?
would can someone walk me clearly through what needs to be done
I cannot do these by phone easily as I already made it clear to them in the initial questionnaire and seeing people just as difficult - even more so now. I feel i have a low tolerance both for stress and people.
Thanks in advance.
DA
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dark-angel-79
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Hi DA, phone the DWP and make a complaint, it will get logged in your files. Phone capita again and also make a complaint, this will also get logged on your file. Be polite and try not to lose your rag. Then phone the CAB and get an appointment. Explain the BI issue and say that you find it impossible to deal with formal issues due to the BI and you lose your rag and the applications get terminated. The CAB will basically do the rest for you.
Yesterday I had a chat with an old friend, she used to work for the DWP, then moved to DEFRA and now is going back to the DWP as a manager. She knew that I was going through the process in the past and asked how it went. I ended up getting everything applied for. I asked her why was it so hard to get it all sorted. She said, and also the CAB told me in the past that basically you go through the first process and nearly everyone fails, then you go to the appeals stage and if you have the medical evidence you will win the appeal. If that fails you go to the next appeal and so on until you go to court. If you have the medical evidence the court will award it to you. The important thing is to get the CAB involved because they know how to deal with the system. Mine took 19 months over all with a gap of 2 months in between.
Unfortunately that is not always the case. CAB thought the same.
One of my daughters made 2 pip applications as she got worse . First application scored zero points and so did second d Appeak at court didnt even have wheelchair access
The assessments were dine by non medics Even with reports she was not awarded PIp which opens so many doors
It is an awful unfair system if you dont tick boxes that is it. A third application was not made she wad too I'll by then.
ESA was awarded
A blue badge was awarded.
Financially this has been a nightmare . Cant work. Doesnt get things like you get with PIp.
CAB were flabbergasted
But a doctor friend was asked for a report as he was denied ot too. He is quadriplegic!!!! Says it all for me.
My God that's the worst case I've heard. I know the joke about these things is that 'even a corpse would not get anything because they failed to answer the questions.' You did mention the case before but I did not know it was that bad. I remember I went to my MP's office to complain, his assistant said to inform them that I had been there first before they got involved. The manager of the decision office phoned me at 7pm to apologise and said it will get sorted out. I got everything that was applied for.
omg, a quadriplegic isn't eligible.. what planet do these people come from.. i mean - personal hygiene for a start.. what they expect him to do.. turn on a shower with his only appendage and call that able bodied.. sorry for crude absurdity.,
I do value your comments and thoughts but this apparent level of callousness by them imo takes it to a whole new level of brain-damaged - worse than us...
Secondly, but in no particular order ok, I'm sorry to hear about your daughters struggles with them. as for a somewhere inaccessible potentially is that not against disability law? to provide access to building for years now. forgive me if I',m wrong, if I am, please correct me. and as for g]having to do twice with no satisfaction.. what kind of scoring are they using?
truly i feel outraged for you so going to leave it there.
Yes. The court had wide doors but you needed someone I.e me to try and hold 2 heavy doors open whilst trying to push a wheelchair through. This was before a £2000 chair bought thay was light enough to be set propelled
The Doctor in question sorted out the mentioned patient with his PIP
executing it, that gonna be tough unless you have an email address for it that is both current and monitored etc as really is a struggle talking to people on phone and face to face for more than a few minutes unless i known them for a few years and lol they understand how not to poke the bear so to speak.
sorry for ramble.
losing my rag yes that is a problem they don't like to deal with, i understand stand that. fair point. from a personal point, i wouldn't like to have someone lose it with me either when trying to my do job. though when upset to point of losing it .. either way i do take your point.
I will put in a complaint through to my job adviser in due course and arrange if i can for CAB even though im aware of certain financial clauses that DWP have put into funding CAB.
I however was understanding that they write your doctors / etc named to get medical information anyway. so for anyone to supply it for what would be a second time, is pointless in my opinion. and yes, I believe whilst i may be able to obtain my medical records, I have been advised not to in the past due to some some stuff in there that the professionals state would be both upsetting and mentally destabilising.
Even in my complaint to Capita, for which the outcome is due in a few days, I was as polite as far as my own view goes. and if I was to share this. others would (i hope) think so also.
Don't do anything until the manager from the CAB contacts you. They should be able to advise you on a step by step basis how to deal with everything. They know what they are doing and know the best steps forward. A little patience and the ball will start rolling.
well the CAB person phoned back after speaking with her manager.
Cant sit in at the moment on phone calls etc.
1, Im to comtact headway.
2, create a card have in front of phone to state BI / effects on phone
3 to contact DWP to sort out on info provided...
the card is so when I have to speak, i need to tell them at the first chance....
Going to contact Headway tomorrow as brain frazzled via email.
So far, I have done number 2... no giggles please.
I'm leaving it for today as tolerance reached.
Thanks for your firm and steady guidance on this. Though must say i find following instruction difficult especially verbal. written bit easier. Thanks once again.
Has the JobCentre assessed you as being fit for work? In my experience, it is almost impossible to get any financial support if the DWP thinks you’re OK. My son is unemployable but you have to let them find that out for themselves. After three failed attempts with PIP,, we went to the JobCentre and asked what jobs he could do. I took my two Lever Arch files full of doctors’ assessments with me. Eventually his work adviser told us she thought the JobCentre couldn’t help him and he should be on UC and PIP. I think the response to the question “how will he travel to work?” which was “who knows - he usually can’t remember where he’s going” did the trick. We quickly got a letter saying they had assessed him as having “a limited capability for work” and then, the next time he applied for PIP, he got sixty quid per week. It’s not a fortune but it pays for fares to appointments which in London can mount up. They must have asked you to sign a Claimant Commitment with the JobCentre - what does your Work Adviser say? People with mental health or disability shouldn’t be required to sign it.
Also, you can’t change who you are and your condition makes it difficult to deal with these people. They’re not going to change because they’re thick bureaucrats. I am lucky because I am a determined mother with legal and PR training. My son couldn’t have done this on his own. He couldn’t do anything on his own. I strongly suggest you seek an advocate to talk on your behalf to stop you getting so upset. My local council offers this service - perhaps yours does too? If not, the PALS helpline, run by the NHS, has links to services and advice. There is a link to them on the Headway website. Or just Google “Advocacy Services for mental health”. Or CAB, but make it clear you need help, not just advice. What does the Headway helpline say?
It’s very hard not to lose your temper with these silly girls who do the assessment. If it helps at all, one was admonished for typing my answer to “can he cook a simple meal?” which was “yes, but he’ll walk away from the cooker and possibly burn the block down” and then giving it 0 points. Perhaps it was post Grenfell, but they wrote and apologised.
I don’t know what’s wrong with them - I can only assume they deal with a lot of fakers. My standard reply (to all medics and bureaucrats) is “if he could do that, we wouldn’t be here”.
This is your project - it’s hard to do alone. But each time you get somewhere, it’s a little win, which boosts your confidence and helps get over the next hurdle.
Job centre through ESA assessment found I was limited capability for work. thankfully this was done with my support worker at hostel was in. though was 3 months into 6 month support after leaving when lock-down started, no support since. supposed to have support from bridge etc.. no worker available..
Paperwork i cant even keep a physical filing system going or maintained. having tried and failed multiple times. never seems to work right for me somehow.
With regards to "Claimant Commitment with the Job Centre - what does your Work Adviser say? People with mental health or disability shouldn’t be required to sign it"
Ives raised complaints with them previously about things - mostly conflicting advice from them and whats posted on gov site / other media - her response - sorry you feel this way. grrrr..
Is this a legal thing that mental health or disabled shouldn't be required.. or opinion. I personally feel it should be legal as if have mental impairment, may not understand and therefore should not sign it. but pressured to do so.
As on own, in a new town after separation, I know no-one here and ATM, help in any way is limited due to covid / and my own abilities to mix / mingle / make freinds etc let alone build up relationship to be comfortable with person to trust them to make a decision that's in my best interest.
as it is I struggle asking for help from places as I feel been put in box where no help available so felt had no choice. Im a stubborn person who prefers to try get things done, like yourself who is probably very tenacious with things with regards your own son. but paperwork / people are not my forte.
Capita dont even record their calls apparently during this work from home so they can put what they want to in the reports with no verification available. I had reply from my complaint today.. though they cannot decide about the complaint due to lack of evidence on their part.
As stated earlier, I will be contacting CAB, but thanks for your input stating 'need help' not just direction.
whilst I can cook, a simple meal.. I have to use timers, bells, boozers and phone notification.. and pretty much stay in kitchen whilst cooking, else if not in kitchen, I wouldn't hear it due to being partially deaf. (have hearing aid but remember to use it...)
during my assessment for 'independent living' done by the hostel I was staying in, made a simple meal, meat joint, stuffing and mash. even under supervision for assessment, I didnt observe or remove the plastic sleeve (not the outer plastic) from the joint prior to cooking. thankfully this was boiled and not put in to the oven - would be an issue as kitchen was site kitchen... . I have burnt pans which ive had to replace as even with a blowtorch and chisel wouldnt be able to salvage.. and made so many 'burnt offerings' its beyond a joke. and cant afford take out either often.
Very sorry to read this. Unfortunately Capita and DWP do not understand brain injuries, so the Capita assessor would not have understood it was your injury talking and not you, nor that dealing with anything official is traumatic for a brain injury survivors brain nor the consequences that go with that. Dealing with anything where a lot is riding on it is stressful and extremely difficult. I agree with other replies that you do need to write to Capita and DWP to complain, especially at the assessors lack of understanding of the complexities of brain injuries, and their lack of understanding of why you spoke how you did. That in it's own right is a disability that one can claim PIP for under the heading of problems with communication and appropriate communication.
The next process you can follow with your PIP application is to request a mandatory reconsideration which is performed by DWP. DWP will look at your application again and see how it matches up against their tick box list of descriptors. You have to do that before you can go to appeal. An appeal is when it goes to a magistrates court. You do that if a mandatory reconsideration is not successful. DWP send all the paperwork they have to the Appeals Service. If you get to that stage CAB can also advise you with that. When you request a mandatory reconsideration you must tell them you will be supplying more evidence, if you intend giving them more. They will then give you a date that your evidence has to be in by, and if they don't give you a date then request one. Once they have the further evidence they will reassess your application again. When you phone DWP to request a mandatory reconsideration and that you wish to submit more evidence, if the date they tell you during that phone call is too soon request an extension telling them CAB are helping you. They can extend the date by up to 2 weeks. Telling them CAB is helping is one of their accepted ways that they will extend the date you need to have additional information in by, because they know CAB are busy and it can take a while. And obviously tell CAB that date too. If you intend submitting more evidence but don't tell them when you request a mandatory reconsideration, DWP will go ahead and look at your claim again without it. If you submit more evidence also tell them about what happened with the Capita assessor. Don't get bogged down into the semantics of it, but just give a brief overview such as you couldn't help speaking how you did because that is on of the ways how your brain injury affects you, and that the assessor did not understand. Your letter to DWP will go to a different DWP department so don't assume that whoever looks at your claim again in DWP will know about your complaint.
What I found out throughout the process is, to get PIP, I really had to emphasise how my brain injury (and heart) affects me, especially on a daily basis. Yes, they did take notice of the medical evidence I submitted, but that really only confirms to them that I have these medical conditions. What they don't know is how those conditions affect me on a daily basis, and quite often hour-by-hour basis. When you submit your mandatory reconsideration really do spell out how it affects you relevant to the descriptors - if you don't have a copy of those CAB will. A good piece of advice I can give you is to assume they don't know anything about how your brain injury affects you, so tell them - everything. The Capita assessors do not research a persons health condition before performing the assessment and neither does DWP. Additionally, if you have issues that your brain injury gives you but they do not neatly fulfill their tick box list of descriptors, still tell them. They need to know any other information. Even if they cannot award PIP for those areas because they are outside their tick box list of descriptors, it still gives them evidence of how you are affected. It helps generate a far more accurate picture.
I had a lifetime award for DLA that was given to me by a magistrates court at appeal because DWP refused my DLA application for an inoperable and incurable genetic heart defect I was born with. When PIP was introduced I had to apply for PIP because DLA was stopping. The descriptors for PIP are different to DLA hence why I had to re-apply. I did not have a brain injury then but nonetheless found the application process extremely stressful. Stress is a known trigger to stop my heart but DWP/Capita wouldn't listen. They refused to perform a desk assessment but said they would do an assessment at my home instead. Thank god my husband took the day off work to be there for me. When the assessor arrived, who was supposed to be a qualified nurse, the stress stopped my heart. The doorbell ringing was the trigger. My husband and the assessor found me still sitting upright on the sofa but I was dead. I was anoxic with all the classic associated jerks and twitching and my head was flung back with my mouth gaping open (not very flattering). I do have an internal defibrillator which re-started my heart but there were complications and I couldn't maintain a proper heart rhythm. I was starved of oxygen for a while. As my cardiologist told me, without a heartbeat gravity would have taken over and blood would have drained out of my head. The supposed nurse did not think to put me into the recovery position or know how to take my pulse. My husband phoned 999 who wanted to know if my pulse was established. He was the other side of the room to me on the phone so asked the supposed nurse to take it. She again did not know how to do this. Thankfully I spontaneously started breathing again because I don't think the supposed nurse would have known how to do CPR either. My husband doesn't know CPR as well. He doesn't want to know. It was the result of this that gave me my brain injury. The assessor stayed with me until the ambulance arrived and I was blue lighted into A&E resus. I received a letter from DWP a few weeks later stating that I did not qualify for PIP. We were astounded. The assessment process killed me but still they refused my claim. You couldn't make it up! I was now incapable of doing anything so my husband completed the mandatory reconsideration process on my behalf and we submitted a lot more evidence. That worked and I was given PIP although only for 4 years, but only for my heart problem because that was what the initial application was for. We applied again for my brain injury, that they gave me, and pointed out why it was unsafe for me to have an assessment and why they needed to do a desk assessment. My application took months for them to process. They did do a desk assessment. My application was very complex and also included that they were responsible for my brain injury. It went high up in the feeding chain of DWP. It didn't even go to Capita. I was eventually given a new PIP award that was for 10 years. As my husband said, they were probably worried DWP would be going to court over what they did to me which would be publicity they did not want.
regarding your first paragraph.. how can they really assess when they don't know about it. would then be just assumption... and that makes an .. leave it there..
reading the rest of it makes me shudder as to how you where treated at home.. I personally would have gotten help with proceeding both against the DWP and potentially the individual as lack of medical intervention caused your BI..
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NOT TO BE TAKEN AS MEDICAL ADVICE..
even as 'only a first aider' i can think off the top of my head, where to and how to take a pulse. usually the side of the neck, wrist, though can be found also bicep / tricep though gotta use bit of pressure,,,, where legs join body (femoral) and area on the foot at the top.
so how as a qualified nurse... or a case of not my job today... or they faking.. as for recovery position.. on your side airway open... as long a they get you safely in this position dont matter how its done in emergency. there are ways yes. but trying to think them through is diff matter.
there are other places to but ...
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when i initially applied, i wrote (typed actually because A : writing terrible normally (since a kid) B: had operation on hand which affect ability to hold a pen and write for any length of time causes pain) and stated in the 17 page document how / why / what etc about BI and affects on daily living including examples. from that, i explained had difficulty communicating verbally and issues that arise.
Will be puuting together action plan shortly based on comments here,
glad you dont have to go through the assessments again for a while ... but at what cost..
thanks for the advice.. will be surmising this shortly.
Totally agree with what you said about what I wrote in my first paragraph. Assessors should know what they are dealing with. The assessor that came to me had read 'heart issue' on my claim, ignored the name of the condition, and made massive assumptions that were totally incorrect despite the name of my heart defect and the specifics associated with it being written on my application form. My husband said she had said I didn't look like anything she had expected. I am petite, slim, have long dark hair, young (not now but I was then) and keep myself fit. She was expecting someone large, unfit and older looking. She also asked lots of questions that were relevant to heart attacks and blocked arteries. Structurally I have a very healthy heart. I don't have heart attacks. I have a problem with the electrical activity of my heart. It sometimes gets confused and goes way too fast which makes me pass out and other times it suddenly stops without any warning, pain, etc that people associate with a heart attack. I have what is called a sudden cardiac arrest. A heart attack and SCA are very very different. Sudden cardiac arrest was written all over my PIP application form but the supposed medical professional clearly did not know the difference although being a 'nurse' she should have. So yes, they assume even when presented with facts. And amazingly, even though I had had a sudden cardiac arrest and my husband kept saying it was that, even to the 999 operator, the 'nurse' (a term I use lightly because even an auxillary nurse knows CPR) kept saying heart attack and even wrote that in her report. She should have read about my heart condition before seeing me.
Yes, 'assume' makes an a... out of u and me. The 'nurse' certainly lived up to that!
Since my brain injury I wouldn't be able to cope with any type of legal proceedings. It would be too complex for me. And I am doing my best to limit my exposure to stress. Before my BI I would have been all over something like that though. Despite the frustration, I now have to choose my battles.
I really wish you luck with your PIP. It is barbaric we are treated so dreadfully when we apply for help.
i do agree in your circumstances about picking battles. im in a few myself. though not of my own choosing mostly. so for you, they got off very lightly.
so forgive me for asking, is it you have irregular rhythms in your ticker?
Hi DA. I am 2 years post a SAH. I am in the process of applying for medical retirement, which is proving difficult as no one really understands brain injuries, not even most GPs. I have applied for both PIP and ESA support group. I have not been able to get either and both are awaiting court but due to COVID 19 god knows when this will happen. I can relate to your frustration as I am exactly the same way when I speak on the phone or get stressed. I forget the words I want to say, and the more stressed I get the worse my communication is. I suffer lack of concentration and dizzy spells which cause me to fall. I have a charitable organisation called DIAL helping me and they have been great. If you have worked and your NI payments have been up to date, you should be entitled to NI based ESA for 12 months. I secured this but finished last November, payments were £140 per fortnight.
I only applied recently for my husband TBI, they have contacted hospital, I showed hospital what was stated in form they said I captured all, but warned me they do reject and I should appeal so now freaking out as this is unwanted stress.
We don't know the system we never requested help in any form from government.
I so know the feeling I have been fighting everyone and not getting anywhere. I have worked all my life prior to brain injury. Unfortunately this injury seems to be such a dark area and so unfair. I was gonna work until I retired but not my fault I have such an unseen disability so can sympathise with you but don't think anything will change so long as you can wipe your own arse
I just think the system is unethical, when he was on life support and 5th attempt I knew of to bring him round they said he will require 24/7 care. He is receiving 24/7 care from me, last month with behaviour I refused residential and this is still granted from BI Team due to no pathway and 2nd week not meeting Cognitive Assessment,there not even attempting next week just a visit to talk to us about Memory/Fatigue Management. But they are going panel next week about my husband and stated they have requested occupational therapist so I'm assuming to get someone allocated asap, I don't know. I' contacted my local Headway over weekend not heard back.
I wish I can do something not for my husband but for everyone to change this messed up system and this community development that has gone tits up.
I'm on a mission at the moment it's going to be long to help my husband with his recovery, but believe me my next mission with this great insight is to not allow such inhuman decision making /lack of support continue.
COVID combined with a broken system, even more of a nightmare at the moment, plus I imagine most agencies are having to try and do things over the phone.
Lots of information here, which means giving any detailed advice is potentially dangerous, in most cases you have to be able to read documents or do a forensic interview.
If you qualified the award would run from the date you first requested the form, so one option could be to make a new claim but you do need to receive one to one advice at least over the phone
Far from clear but we may not have a situation where a Mandatory Reconsideration can be made, so it could be a frustrating long road to get back to being re-interviewed.
So as many have said you need to at least speak to a qualified adviser, if CAB in your area are struggling at the moment, try a Google search for Welfare Benefit advice along with your town. There are many other agencies who can give advise equal to the average CAB office.
ok so C-19 is an issue at the moment. no question. that aside. its a broken system and regardless of C-19, C21, C24 etc (hope not!) that needs to be either be fixed - or scrapped and come up with something that does work. Even now there are still legal isssues with this system. so taking on board these issues, would be a step in the right direction, plus listening to the advisors - and not talking about their mates companies etc.. for decent advise.
A lot of people here stating some issue with the system especially when comes down to assessors not understanding. there in itself is an issue.
reading is one thing. understanding what is written is another. many here may have issues with. myself included. especially if using long words / complex sentences or even if the sentence / phrase can be taken in more ways than one.
and as for making a new claim. that is nothing more than delay tactics as im sure you can figure that one.
I have spoken with CAB - little help - in these times...
looked on local council site for info re welfare benefits advisors and most are geared to:
Age, Debt, Parents and Families, Pensions, but have found one or two that may meet my needs. Sorry, i dont do drugs, drink etc though could do with one sometimes but messes me up more.
most of these places I have emailed, so not to impact heavily on existing loads etc and ensures I have something I can refer back to etc.
already viewed info etc one this, some of it not sure if updated often (last updated on a page was 2017)
I have just sent off today my reconsider request so look forward to that.
going to get off now as this is making me really grrrr....
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Goodbye and thank you from a BI "survivor"
Is this really all worth it.....?
A year on and I am struggling to cope with the 'new'person I am married to
Back on the DWP merry-go-round
Mood Swings
