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Hello, I'm New Here. ESA Rant and Questions.

Reria74

Hello, I'm currently in receipt of ESA (WRAG) and PIP (Enhanced for both), my Son is also my carer, I have been diagnosed with severe anxiety (SAD/Agoraphobia) and my previous Dr after going to her for years for help with pain and my mental health said it was likely I have fibromyalgia.

The DWP has already deemed me fit for work twice before, once in 2010, which was overturned by the tribunal panel in 2011 and then again in 2011, the tribunal panel again overturned it, this was in Jan 2013, June 2013 they send me another form, I send that back and I didn't hear from them until Sept 2017 when they sent me another form. I got my diagnoses for my mental and physical health after them declaring me fit for work twice.

I had an organisation fill my form in for me, I sent them my conditions and what I suffer with and how it affects me via email, I also spoke to a nice lady over the phone which I found hard but I needed to get help with the form. I also sent them my medical evidence to check to make sure it was ok to send, they said it was fine and to send a patient summary in with the evidence, I did that. 5 weeks later I get an appointment letter asking me to go to the assessment centre for a F2F. I contacted the place that helped with the form and they said there may have been a problem with my evidence, when I showed them it previous to me sending it... I was then advised to contact the assessment centre ask them about a home assessment then contact the Dr's surgery to ask if they would fax the assessment centre with a request, after a lot of messing around my Son managed to do this on my behalf, I know I am not guaranteed to get an home assessment, but it's worth a try.

This has caused my mental and physical health to become worse, I am constantly worrying and being told different information from another forum that's meant to advise about benefits. I feel like I'm being nitpicked at a little bit on there and don't feel like I can ask them for further advice. One of them claims we spoke about these things in PM, she seems to forget I have a very bad memory and don't remember half of what I've spoken about, I'm also being told that I should go to my Dr's and ask to be referred to a rheumatologist because a Dr's diagnoses doesn't fly with the DWP, I tried to explain to these people that I haven't left my home for about 6 - 7 months and said I would ask over the phone, they are telling me I need to go in to the surgery but in my opinion that is a contradiction to what I suffer from, if my Dr is asking for a home assessment because I don't go out.. then surely me going in to see a Dr would contradict that? Do I actually need to see a rheumatologist just because the DWP supposedly won't accept a Dr's diagnoses?

Also, as I said up the top, I sent medical evidence in with my form, but I've read that half of the time it's not even read? and that you should take your medical evidence because the assessor doesn't always have it with them? and that you need to take a copy of your ESA50 to refer back to it, but again if I am telling them on my form that I cannot concentrate on reading etc. isn't that also contradicting what I am saying on the form?

I'm finding it all very stressful and confusing, also being told old medical evidence (from 2012 onwards) isn't good enough but then being told it is good enough if it's still relevant, which it is. The patient summary which is a new one say my conditions are ongoing, however, there is information missing from it from my current Dr's for some weird reason.

Sorry about the long post, having a bit of a rant and just want other peoples opinions without them sounding like they are taking potshots at me. Advice is always welcome and appreciated.

PS - Sorry about any grammer or spelling error, I use grammerly but that doesn't always get it right. I have poor concentration and attention span. Also sorry if it sounds like I'm rambling.

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Comments

CockneyRebel

Hi reria and welcome

No problems with a good rant, sometimes helps.

I am so sorry that you keep getting conflicting points of view, hopefully we can help straighten things out a bit.

All evidence is good evidence but the more recent it is the better. Many people with long term conditions get "parked" in the system as there is no more that can be done other than to just manage their problems.

It does seem as though evidence is unread but the DWP place more importance on the HCP report as that is their "experts" opinion. One way of helping is to reference page and paragraph to specific points that you want to make. If you have sent in many pages of evidence this will help the reader to find what is needed.

Home visits usually need a very specific GP's letter to the effect that you cannot attend and in your case this is because severe agrophobia makes it impossible for you to leave your home. It is also worth getting in touch with your local MP and explaining to them your situation, MP's involvement can make a big difference DWP seem to pay attention to them.

Please come back with any questions and we will try and help

CR

Reria74

Thank you very much for being so nice and understanding @CockneyRebel I really appreciate it, the other forum I used had me feeling very anxious about everything.

I've already sent the evidence

I wasn't advised to do what you suggested. The assessors are useless though, they lie on reports, in my assessment they hardly asked anything about mental health, they were more concerned about my physical health.. which is bad really. Do I take the evidence to the assessment? (if I don't get a home assessment).

Yeah this is what has happened to me, because I've tried lots of different things previous to me being told it was likely I had FM, I had tried mental health meds (for years, lots of different ones), painkillers, acupuncture, CBT, counselling, physio, dietician, had an assessment with a psychiatrist who suggested I stop taking meds for my mental health because none of them had worked, when my Dr said it was likely I had FM, she didn't refer me to a Rheumatologist, she pretty much said I had tried everything that would be suggested for FM previously, I think this is why she said she couldn't help and didn't refer me to a rheumatologist. I pretty much have no help (I do get help from my Son who is my carer), not on painkillers, not that I like them anyway, side effects etc.

Would it make any difference if I was referred to a rheumatologist in regards to the DWP? My friend was referred to one, they diagnosed her with FM and that's it, no more help, she smokes weed to help with pain, which isn't something I'd do, it makes my headaches worse when I smell it.

My son requested a home visit, there was a lot of misunderstanding due to the assessment centre, but we got there in the end and after my Son spoke to the secretary she understood what was needed and even took my NI number for the Dr to put on the paperwork, she said they had requested a home assessment for another patient, but because it didn't have an NI on it, the assessment centre lost it

What would I need to say to the local MP? I'm useless when it comes to contacting strangers.

Thanks again!

CockneyRebel

It would be better to send copies of any new evidence to DWP and the assessment provider, just to be safe have a copy for the assessor but they probably won't read it at the time.

FM is still a little understood condition, but we can't give medical advice on the forum. Although we have many members with FM who may be able to give you some tips.

Because Benefits is mainly about functionaliy and being able/unable to do some work related tasks, most HCP's concentrate on that rather than MH which they probably don't understand.

It is important to try and understand the points system, the descriptors and the criteria for an award, a good place to start is the self test on the B&W site

http://www.mybenefitsandwork.co.uk/med2/indexxx.php

If you contact your MP just tell them briefly what your conditions are and why you need a home visit even though they are insisting that you attend a centre which you can't do because of your agrophobia.You can find details of your MP

http://www.parliament.uk/get-involved/contact-your-mp/

Please do come back with any questions, I am sure that other members or the advisors will have better/more help for you

CR

Reria74

Ok thank you very much @CockneyRebel

Reria74

My Son asked if my Dr would request a home visit for me, the secretary said she would pass the info onto the Dr, should I still contact the local MP anyway?

CockneyRebel

It definately won't hurt

CR

Reria74

Ok, I'll sort that out this week

Thanks again!

Reria74

Woke up feeling quite down and anxious today.

I'm a bit peeved by the fact even though a home assessment was requested on the form we've still had to mess around asking for a request for a home assessment. Don't they read your forms when you send them in? There was medical evidence saying what I suffer from. I really don't see the point of this current system if they don't check forms or medical evidence but still declare you fit for work. neither the DWP or assessors should have this sort of power, they aren't medically trained. I have zero faith in the system and pretty much think I'll be deemed fit again, that will be the third time. I just want to be left alone.

Pippa_Alumni

I'm sorry to hear that the process so far has been such a struggle for you @Reria74, and I'm sorry that you're feeling down today too. Keep us updated and we'll do our best to advise you where we can.

Reria74

Thank you @PippaScope

Reria74

Does anyone know how they let you know if they are doing a home assessment or not and how long it takes them to get back to you about it (roughly)?

Also, I read on here somewhere that someone took their support worker to an assessment, the support worker did most of the talking and the person answered the questions they asked. My Son is coming with me if I do need to go and will be here if they do a home assessment, is he allowed to say anything during the assessment? He is the one that does everything for me. Shopping, picking up meds, making phone calls, cleaning, cooking and so on. He gets carers allowance.

CockneyRebel

Usually you will be notified by post giving you 7 days notice. Occasionally you might be offered a quick appointment if they have a cancellation, which could be by phone or text if you have given a phone number. If offered a cancellation you do not have to accept.

Normally they can only make appointments for 2-3 weeks in advance, but you could be waiting 4-6 weeks before you hear,

Yes you can can be with you but predominantly they will want to hear from you although your son will be able to help if you have trouble explaining

CR

Reria74

Thanks @CockneyRebel

I'd only accept a cancellation if they allowed me to have the assessment recorded. If I still have to go into the assessment centre then I'd obviously keep my current appointment. Someone said I should ask 48 hours before my assessment for it to be recorded, but don't they need more notice than that?

Umm, well the thing is my assessment is meant to be on the 24th of November at the centre, that's why I was asking how long it takes them to get back to you and let you know if you can have a home assessment or not? No one at the assessment centre told my Son what happens once the Dr requests a home assessment or how long it takes for someone to get back to us about it.

Ok, that's good in regards to my Son. I do get tongue tied and forget words and such often and do tend to look at my Son for reassurance.

Very sorry about the questions but because I've been told different things I need a little bit of reassurance so I don't do things wrong, I'm probably over thinking it which is something I tend to do. It's like I have to have everything planned out in my head.

CockneyRebel

Not a problem

There are lots of differing and misleading things out there, some intentional .

To record an assessment you first need permission in writing. Then you need to supply recording equipment capable of making 2 simultaneous recordings to CD or cassette.

CR

Reria74

That's for a home assessment? What if I have to go to the centre? I've been told they can provide the equipment but to let them know 48 hours before.

It's things I've been told on another forum.

CockneyRebel

That unfortunately is not true. In all PIP assessments you must have written permission as some assessors do not want to be recorded.

At the moment only ESA can provided recording equipement, in all PIP claims it is your responsibillity to provided the equipement even if attending a centre.

There have been calls for all assessments to be recorded but at the moment other than a small pilot scheme this is not happening

CR

Reria74

Yeah, this is an ESA WCA.

The PIP assessment I had at home and was awarded PIP enhanced rate for both. No recording because of what you stated.

CockneyRebel

Sorry, I do get confused.

Yes with ESA they should provided the equipment, You do still have to give notice as again not all assessors want to be recorded. This often results in a delay in assessment.
However, what often happen is that when you arrive for assessment the equipment is broken/not available etc. If you then refuse to go ahead without the recording they may close your claim for not participating. It is not considered by them as good cause even though it is their fault

Sorry for the confusion

CR

Reria74

No problem, that's again different to what I've been told on the other forum, it's been suggested that I go there and ask if the equipment is working and that I should ask them to check, if they say no then I'm meant to say well in that case then I'm meant to suggest that they want to rebook the appointment because it's their fault for not having equipment...

I've just contacted the organisation and asked if they knew how long roughly it would take them to let me know if I can have a home assessment or not and they said "Generally it depends on if they decide to contact your gp themselves, it can be weeks or less"

I'm really flustered now because what do I do in the meantime? The appointment is for the 24th... Will they cancel the appointment while they are deciding or?

I've never asked for a home assessment before so I'm clueless about it all and what we are meant to do. Even this organisation doesn't seem to be of any help and I paid them a fee to fill my ESA50 out *sigh*.

Reria74

So my Son just called the assessment centre to ask if they'd gotten a request for a home assessment from my Dr... nothing, he called the surgery, the people he needs to speak to aren't in until the morning and there's nothing on the system... I can't even move surgery because the other one near me is worse than the one I'm with. I've got an appointment on the 16th, I want to ask if the Dr will refer me to a specialist in regards to my FM... I'm not feeling very hopeful after this. Hopefully, she has done it but it's not been sent yet or something, I really hope she's not refused to send the request.