Received the dreaded brown envelope today DLA to PIP advice and experience please?

[BenefitsFears]

Name changed for this as can be controversial. If you recognise me please don't out me.

I'm on legacy benefits at the moment and was advised NOT to change this until I absolutely had to... Well that day has arrived apparently.

1 - will this trigger me onto UC?

2 - I'm housebound agoraohobic among a whole laundry list of stuff and I've not read good things about the powers that be accepting this as a reason why claimants can't attend assessments. I'm also extremely anxious about visitors to my home and at the moment can on!y go in 2 rooms at home really really dreading this!

3 - letter says I need to contact them by 9 sep, that's not a problem by phone. But what happens regarding when DLA stops and pip assessment and when first pip payment received (even if it all works relatively smoothly?)

Any tips from anyone who has been through this?

My main disability is my my but I also have a physical disability which is diffcult for them to assess from memory of DLA assessment as the main issue is pain.

I am absolutely DREADING this and fear all my money is about to be messed up and as I didn't get the letter till this evening I can't even call any of the usual advice lines until monday! Argh!!

It's put my anxiety through the roof!!

I also don't have anyone involved in my care at the moment apart from my GO as I've been badly let down by cmht I'm on waiting list for another service but that won't be happening until oct/Nov at earliest and they don't really deal with this kinda thing.

Feeling very alone and scared to be quite honest.

Look for a charity linked to your disability and seek their support. Things seem to be better for people transitioning now than they were at the start.

I haven't had great experiences with the charities that are supposedly for people with my conditions especially on this stuff. But thanks for replying

I was on lifetime award DLA for Bipolar disorder and had the dreaded letter last year to apply for PIP. I did end up with a reduction in money, but I was still awarded some. I think the assessment was fair really as I don't think I have been so unwell in the 18 MTHS leading up to reassessment. Please message me any questions you have. Do you have a good paperwork trail for the last couple of years? I sent in as many reports and assessments as possible from different professionals. I would also suggest you get yourself in the secondary care system ASAP for your mental health. Good luck!

There's citizens advice and if you over 55 (or might be 50) age uk can help to.

Remember the questions asked are based off "safely, reliably and repeatedly" so even if you can do something sometimes that's not hitting the definition.

We've found both esa and pip staff very understanding about the lack of care in the nhs for long term health conditions so dont worry if your not currently seeing anyone.

Supporting evidence, doctors letters and reports, keep a diary for a few days showing how your impacted and include a letter from friend/family as a final touch if you can but its not necessary.

If your called for an assessment either at home or at the centre then have someone you can trust with you.

Oranges - i am much worse than I've ever been definitely worse than when I had my last assessment which I was able to attend in person and - for me - i was relatively well at that point. If anything I should have applied to increase my claim as I'm pretty sure I'd have been eligible to receive higher rate payments but I've been too afraid to risk rocking the boat!

I don't have a paper trail as I can't cope with paper stuff to me it's contaminated. I open post read and immediately discard.

I was under the secondary healthcare team - the community mental health team but I am currently without an assigned worker from them basically cos they've screwed up but won't admit it. I'm still supposedly "on their books" but I don't see anyone or hear from them. My gp was going to write to them, but I've not heard any more about that and that was a month ago. I spoke with an advocacy service and have also spoken with the relevant complaints dept of the health authority to get info, I don't want to take it to that level but especially with today's news I feel I've little choice!

I haven't migrated from DLA but have had two face to face assessments. Both of the assessor's were lovely and I was awarded enhanced on care and mobility both times. They gave me my last assessment at home. There are advice pages on Facebook. Both times I only had a few copies of consultant letters, the ones they send after appointments, no GP letter. I also had DH sit in with me at both assessments.

Hazard I've had APPALLING experiences with cab on these matters before, I'm too young for age UK (even though I feel ancient most days).

I am aware of the trap many of us fall into of describing our better days rather than the reality of our usual or worse days I've made that mistake before I will try and drum into myself "safely,reliably and repeatedly" there are very few activities if any where that would apply for me. Even turning over in bed has to be done carefully.

're your comment on long term health conditions no offence but my experience is that there is sympathy and understanding to a point for physical conditions but very little for mental illness. Even within mental health services there's still a lot of the attitude of "you need to try harder to get better"

I don't really have anyone locally for support. Nobody that could be here for the assessment. I'm probably going to have to try and get someone from a local charity or volunteer service for that. I will need someone as when I am that anxious I can get very tearful and/or speak very quickly so they can't understand me and get very frustrated.

I don't have paperwork at home. I can speak to gp. I will try and keep a diary, it will be very boring as it will basically be

Stayed in bed most of day
Took meds at correct times
Ate my one meal I eat
got a few hours sleep when exhaustion eventually took over.

That's basically my existence at the moment.

I was moved from DLA to PIP last year. My experience was actually fine; I felt that I was being assessed by a suitably qualified person and my rate was increased.

One thing I did before I filled in my form was to download the award criteria and look at the different levels of disability described. I made sure the stuff I wrote on the form corresponded to my actual level and I made sure I was using the right form of words. So I made it very clear and easy for them to assess me really.

Download a copy of the advice guides from Benefits and Work, you do have to pay but it is worth it.

Get as much evidence as possible, either from health professionals or people who know you well. You can request copies of medical records for free under data protection legislation.

I think you need a letter from a GP for a home visit.

Your main problem will be that if you go to
the assessment meeting they will say your not agoraphobic as you got to the meeting
Therefore you can obviously go outside follow a map or road signs use transport or drive go out on your own
I’m not trying to scare you just pointing out what they will say

So you need to ask for a home visit
The 9th of September is when they require the form back If you don’t get it back by then they will send you a reminder and then stop any DLA
You need to ask your doctor for a letter outlining your health and stating that you need a home visit due to your health and limited ability
Get that letter straight away even if you have to pay for it
It’s best to write out what you want the doctor to mention ie history of your health and that your need a home visit

Tinkly - can you recommend/link to a good list of criteria? I've tried googling but not finding anything very useful, the .gov stuff is still very skewed to the physical

Ginger - I will probably do that re benefits and work. Thanks. Re evidence I've been trying to get certain info from my GP and mental health team for MONTHS and so far been unsuccessful. I'm worried sick I won't get this stuff in time!

Itsjustmee - absolutely no way I can attend assessment in person I have panic attacks just leaving my bedroom sometimes! I understand why you made the point though.

Shows the lack of understanding of agoraphobia though as it doesn't necessarily mean completely housebound at all times, it can mean can only go out under certain conditions, to certain places etc.

I'm shocked they expect the application completed and sent in within 3 weeks!!

My GP is lovely but not always speedy at dealing with stuff.

I'm worried sick I won't be able to get this all organised especially as I can't cope with handling paperwork/post. Is it possible to do by phone/online?

OP, I used the turn2us website. But my disability is physical so not sure how well it would work for someone with mental health issues.

pipinfo.net/

The charity I volunteer for advises clients to keep a diary of how their conditions affect them. This can be simple sentences - eg. Monday - "I stayed in bed until 2pm because ...". "I didn't have any food in the house so had to wait for my mother to come and cook dinner for me", "I had a doctor's appointment, but I couldn't get to it, because...." - etc. You could do this electronically if you can't do it on paper.

You really need to keep medical paperwork. Is there someone who could keep it for you?

The point system you are finding on gov.uk is the point system. This is what they use and have to stick to. There is no other one specifically for MH issues. You need to think about how your conditions affects your day to day living - dressing, eating, going out etc. Here is a guide...

www.turn2us.org.uk/Benefit-guides/Personal-Independence-Payment-Test/What-is-the-PIP-test

You may be able to get help to complete the forms from Citizens Advice or a mental health charity.

Have a look at fightback4justice website they have lots of information to help with all conditions and can also help fill in the forms with you

1. No this won't trigger a migration to UC.

Oops posted too early!..

Re the paper work, can you scan or take a photo of it when it arrives so you have a digital copy. Then discard it. Like a previous poster said, you really should keep this information.
I can’t offer any advise on the rest but all the best to you.

1. You should be able to get a home visit assessment but they may require a doctors letter or other medical evidence as proof that you are housebound.

1. If you are awarded PIP, the entitlement to DLA ends 4 weeks after the next DLA pay day and then PIP begins. If PIP is turned down DLA also runs on for 4 weeks after next DLA pay day.

If you can't get anyone to help you. Get a list of the PIP criteria/points to look at when you complete the form and remember you only have to satisfy the criteria 50% of the time. And you also have to be able to do the activity safely, reliably, repeatedly and in a reasonable time period. So, for example, if you can only prepare a simple meal 2 days out of 7, you should be deemed unable to prepare a simple meal and be awarded 8 points. If you can prepare a meal but it takes you more than twice as long as a "normal" person because perhaps you have to keep stopping to take breaks for example, you should be deemed unable to prepare a meal. If can prepare a meal but only breakfast because after that you are too exhausted to do anything else and have to rest or sleep for the rest of the day....

You get the gist!

Remember also to include any aids you use to help you.

If your PIP is declined it is worth challenging as although most mandatory reconsiderations (the first stage of challenging) are declined. Most appeals are successful.

Good luck

Oh and send as much medical evidence as you have as possible. Preferably one that supports anything in your PIP application eg that you can't go out. If you don't have anything see if your GP will write a letter (this may be chargeable depends on the GP) Give then the criteria and outline the ones you think apply to you.

The PIP process takes months so you have plenty of time to get this if you have just had the letter. You can send after the form - just write medical evidence to follow on the form and send ASAP. Def send by the time of the assessment or they may make a decision without it.

The activities do come across as focussing in the physical. You need to think how your mental health affects you doing the activity. So for example if you are depressed and don't want to up shower and washed and dressed 5 days out of 7, this may qualify for points in the washing & bathing and dressing/undressing activities. For example if you need prompting to do those things because you feel depressed the. You might get 2 points. If you cannot do them at all for more than 50% of the time you might get 8 points in each category.

If you ring and say you are waiting for a home appointment for someone to help you fill out the form they will give you an extra two weeks to return it.
Wait two weeks before ringing.
You don’t actually have to be waiting for an appointment.
Also if you are classed as vulnerable due to mental health reasons in practice they should send you a pip appointment whether you return the form or not.
Don’t rely on that though.
Your GP must provide proof that you need a home visit unless it’s capita when they often do home visits.

Tinkly - thanks for the info but in my experience previously it's very difficult to get mh issues understood or fully recognised by dwp. I'm not saying it's easy for those with physical disabilities but it's marginally easiER if that makes sense?

Backafter - the pip info link on the conditions there doesn't really seem to be specific info? Activities section might be a bit more helpful but again it's very skewed towards the physical. Eg I am physically capable of making a simple meal but I very rarely have the motivation, energy or desire, I can't actually remember the last time I cooked anything and I include just heating up cooking in that as in freezer to oven job. I shop online and I buy things that can be eaten cold and only eat once a day and that's mainly motivated by I need to eat before taking meds as otherwise I'd have an upset stomach which would cause me extreme distress and I have to take the meds as missing even one dose can have serious repercussions. How would I explain all that?

Whatagreat - how would a diary of mainly INactivity work? I'm in bed most of the day. I leave it once a day to fetch food from kitchen and go to the bathroom for "ablutions". That's my life.

The only exceptions are once a week each to deal with grocery delivery and putting the bins out. (Different days)

I don't have anyone who could reliably hold medical paperwork for me no.

As I've said I've no faith in cab as they have badly let me down before. They advised me with my first claim and it was rejected and incredibly difficult to appeal due to their poor advice. I eventually got it sorted but I will never use them again.

Mayjane - fightback4justice are a paid service it seems and I am reluctant to pay out for anything if I don't have to at this stage in case I need the money later on. I have a local charity that sometimes help with this kinda thing I am hoping that when I call them Monday they can help, this thread was to get an idea of what to expect with the whole process and what people's - especially others with mh conditions - experiences had been and any tips. But I will definitely bear this option in mind if free help is unavailable or difficult to access. Thank you.

Elle - I can't take photos myself as I cannot touch my phone when "contaminated" by the post it would be very difficult for me. But possibly someone else can and then email me the pics. I have someone who could maybe do this but I couldn't rely on them to store paperwork safely or to be present for assessment.

I am most concerned about having nobody with me for the assessment. I have nobody personally who could do this and I don't have an assigned support worker at the moment - that's something I've been trying to resolve and not getting very far!

I need support desperately but I'm not getting it from the organisations that are supposed to do this.

MiniMum would it be ok to pm you? I'd like to discuss in more depth if ok with you?

I very rarely have the motivation, energy or desire, to make a simple meal. I can't actually remember the last time I cooked anything and I include just heating up cooking in that as in freezer to oven job. I shop online and I buy things that can be eaten cold and only eat once a day and that's mainly motivated by I need to eat before taking meds as otherwise I'd have an upset stomach which would cause me extreme distress and I have to take the meds as missing even one dose can have serious repercussions

How would I explain all that?

That sort of explanation is what they are looking for on the PIP form. There's often not enough room to write a proper explanation.

Type your answers clearly marked for each question because they are much easier to change and just write 'see attached notes' on the form.

At the assessment, if you can't do something, clearly state no.
If you can do something with help, then answer No, but [outline the help]
Any answers given as Yes, but tend to be read as only Yes.