Sharing experience of PIP, seeking advice

[what's the point]

Hi everyone, I wanted to share my experience as I guess I'm in a state of shock, it's numbing, and somewhat cementing... coming to terms with my life now... Winning a tribunal after nearly two years post cPTSD has been totally exhausting.

I was not awarded upon first applying in spring 2023. 0 points for everything even though CAB helped me with the form and it was full and fair, I think I applied for 18 points overall where relevant and, due to my condition at that time. A family member helped me (wrote for me) a mandatory reconsideration letter as I was so distraught following going back to work to end a poverty I wasn't used to and try to maintain a standard of living. There was a tonne of errors and oversights in the assessors report, which were highlighted at manual reconsideration. This still achieved 0 points. In November 2023, even after providing diagnosis from consultant psychiatrist, I was awarded UC LWRA a day prior to PIP original assessment and decline. I registered an appeal and somewhat tossed the paperwork aside.

Let's not take away from the everyday struggle, I am sure this can be appreciated. My ability at work is less than half, I note my concentration can wain, I get irritable, struggle with sight and vision in extended teams meetings, and sometimes nothing goes in. My GP has been great, I have exhausted myself in seeking feasible means of therapy. NHS wait 12 months... still better than the original 2 years.

Anywho... I finally got a date for tribunal, it was successful. I didn't come to gloat, and can appreciate the pain and anxiety that is caused during this process. I guess, I just wanted to see if anybody else had been through a similar thing?
I felt disjointed for 4 days following the tribunal, kept doing clumsy things, didn't drive for a few days. I guess it's the realisation of the fact that I should have had support, and for two years nearly instead I have struggled to keep afloat.

The tribunal hadn't even been given my manual reconsideration and original application evidence, and facts from a previous PIP application was used with errors and omissions in the application assessment report to try to assert that I can manage relevant to certain criteria. The tribunals decision was made.

Another reason I am here is because, in the past thos forum I believe has "saved me". The support I've received truly, I couldn't be more grateful - having this safe space. Thank you all!! Because the reality is... due to affects of ptsd, trauma, emotionally abusive upbringing and ill patterns of relationship forming habits, and ongoing affairs!! I literally have nobody to talk to about most things. One thing I am grateful for out of the result is being able to start counselling. I'm going to start privately whilst awaiting NHS. I wanted to offer my support to others if I can share my experiences or offer any guidance, even in the smallest way... please message me , or comment for all to see. Also, any advice gratefully welcomed - as somebody who lives alone, I now must try to adopt affordable habits to support in areas of struggle. I have been recommended loop earplugs for sleep / noise. I yet have no clue what to do about most other things though... the forgetfulness, irritation, inability to multitasking, exhaustion, anxiety, diet and tasks such as shopping or cooking
... I tried to refer myself to social services in the summer, though, they near enough laughed... any suggestions gratefully welcomed.

 

[Midnightmoon]

finally got a date for tribunal, it was successful

I'm sorry you've had such a hideous process with PIP but pleased a positive outcome has finally has been sorted.

tried to refer myself to social services in the summer, though, they near enough laughed... any suggestions gratefully welcomed

Did they give you a needs assessment? Anyone is legally entitled to one by their local authority on the grounds of physical disability or mental health... They can't refuse. Each council judge it slightly differently but this is a good general link

Over-60s benefits - Which?

Find out about the government benefits, as well as other perks and discounts you can claim once you're in your sixties

www.which.co.uk

You have to have two or more qualifying care needs, and not too much difference to PIP in the sense that :
'a person can’t achieve an outcome if they’re unable to achieve it without assistance; without significant pain, stress or anxiety; without endangering themselves or others; or if it would take significantly longer than would normally be expected'

They do a financial assessment afterwards to calculate costs of stuff like a PA or equipment but you don't have to take their care company - you can opt for direct payments via a personal budget (or managed by a third party) which give you a bit more flexibility. As you have a good rapport with your GP is it worth asking then for help to have a referral?

 

[what's the point]

I'm sorry you've had such a hideous process with PIP but pleased a positive outcome has finally has been sorted.

Did they give you a needs assessment? Anyone is legally entitled to one by their local authority on the grounds of physical disability or mental health... They can't refuse. Each council judge it slightly differently but this is a good general link

Over-60s benefits - Which?

Find out about the government benefits, as well as other perks and discounts you can claim once you're in your sixties

www.which.co.uk

You have to have two or more qualifying care needs, and not too much difference to PIP in the sense that :
'a person can’t achieve an outcome if they’re unable to achieve it without assistance; without significant pain, stress or anxiety; without endangering themselves or others; or if it would take significantly longer than would normally be expected'

They do a financial assessment afterwards to calculate costs of stuff like a PA or equipment but you don't have to take their care company - you can opt for direct payments via a personal budget (or managed by a third party) which give you a bit more flexibility. As you have a good rapport with your GP is it worth asking then for help to have a referral?

Heey, first of all thank you for your reply, second I wish I could navigate this site better to reply to your comments by quote as you have mine... nonetheless, I am not sure if he conducted a needs assessment but did telephone after a few days (referral made by myself and then GP, GPreferral wasnt even followed up with me) , and concluded that I didn't meet the criteria for the service offered. This was prior to PIP acceptance of claim though, signifies no more ... I might try again with a firmer handle on it as I did not ask for a needs assessment via that route.

Thanks again

 

[Midnightmoon]

I wish I could navigate this site better to reply to your comments by quote as you have mine.

It's very easy once you know how, just highlight the text and press and hold, an option comes up to quote, click that and then they appear as options to add to your reply. There's a practice board on here and this help page probably explains it far better than I do!

Quoting

How to quote using the various methods available.

www.myptsd.com

concluded that I didn't meet the criteria

I'd look at the criteria yourself on whichever your local council is and if you feel you meet it it's worth an ask... Social care are quick to say no when it really should be yes... The assessment almost always involves you, or your carer, significant other etc if the individual isn't able to participate for whatever reason. They are alot less formal than PIP and more about what your needs are and what help would you need in meeting them.

If someone else is meeting the need for you, they will class that as met, even if the arrangement is short term/ not sustainable, which is why so many carers end up getting awfully burnt out before help arrives...You have to be quite firm unfortunately in explaining that the need isn't being met safely/ reliably etc etc for them to take it on board. A PIP report would help as well as feedback from family/ carer etc of any help they provide. If they are a carer you can also go via social care for a carers assessment which would again open up different support options (they can fund stuff like respite breaks, cleaning ect)

Wishing you well with it all

 

[what's the point]

If someone else is meeting the need for you, they will class that as met, even if the arrangement is short term/ not sustainable,

I understand what you're saying here, I guess the truth is that it is not being met, there is no sig other or carer... most of my family and friends live a short distance away.

the need isn't being met safely/ reliably etc etc

Thank you for pointing this out, I should eventually get around to it... possibly next week

There's a practice board on here

Gee, thank you

 

[what's the point]

Wishing you well with it all

Hey!! Thought I'd update, and to say thankyou for restoring my confidence - i made another referral with support to do so, and was much more honest, I think in part, I am too only becoming aware of my ptsd and difficulties myself. Having had a needs assessment finally, I now have a visit upcoming where they plan to outlay my needs determined by their assessment... what support/ signposting theyre offering I only hope there's something that does align and am very worried about being sold a short straw, and buying it (usually me). I'd really welcome any pointers... I have taken on board what you said about costs and their company vs private. At present, I cannot afford much. They spoke about me needing to pay for some of it. At the time I said okay, but I am on a low income... a little confused here. Nevertheless thank you once again for your time.

 

[Midnightmoon]

really pleased that you managed to access an assessment, you've done the hardest bit!

In each area they've identified a need they'll now discuss with you how to meet it, so it could be things like equipment to help you be independent at home, carer help, a PA, cleaning service, access to transport or a combination of different bits and bobs. Have you got a copy of your assessment? It might be worth knowing yourself where the identified needs are so you can start to think about what might help to meet them and anything you don't want too. (Eg as a basic example say the need was to be able to access nutrition... Some people might need equipment to stay independent themselves in the kitchen, others might have a carer call to prepare, or a meal delivery service, or a PA who batch cooks with them). If anything feels a definite no make sure you get that across from the start, and highlight what would help.

Costs, so after they've done this talk through with you they go away and calculate the total cost of the package. They ask you for evidence of income (normally bank statements) and they work out how much you have to contribute to that care. Its done on affordability and works on percentages. Low income means a low contribution. You aren't locked into this at all, if it comes back and feels too much you can just say no thank you, or tweek what's been suggested to make it into a package you can afford.

It can feel a bit overwhelming, it's ok to not agree anything there and then and take your time to think it through before deciding.

Anyway, that was super long winded sorry, but well done, and good luck with the next bit

 

[what's the point]

Anyway, that was super long winded sorry, but well done, and good luck with the next bit

No need to apologise, thank you so much for your input .. it is very overwhelming, everybody is different but asking for and accepting help is certainly a process. Thanks for the well wishes ahead also, I'm quite nervous. I am on a low income. Though I'm due to start work soon on an ad hoc basis. I know what I need and could certainly benefit from in terms of support, I'm just worried whether that was captured in the assessment or not, and whether it may be seen as asking for too much... there's a lot of stigma around these sorts of things, though I guess I should remain focused on what has happened so far, which is positive