Handhold needed/rant... DWP/PIP related...

[MadImFurious]

Can barely think straight. So angry, frightened, frustrated. So tired of dealing with this stupid system, where every door slams in your face, where everything is made as difficult as possible.

Failed assessment for PIP benefit. Assessment a sham, featuring questions like "what treatment are you getting for your autism?"
Report full of lies, and stuff that's not relevent (apparently studying with the Open University because I couldn't cope with a normal uni is somehow evidence I'm fine).

Reconsideration asked for - just got another letter from them saying the same thing, ignoring all the evidence I've provided, and not addressing any of the points I raised, just re-stating lies that I appeared fine in the assessment, and some new lies (eg. claims I got the bus there when I got a taxi).

I'm trapped - I went to the assessment alone because I couldn't get anyone to go with me at such short notice. I really struggledd, and just the whole process of gathering all the evidence messed me up so much it contributed to a breakdown and having to defer university (kind of disproving their point I'm coping by studying).

Gathering evidence is extremely hard, as there are no services or support for adults with ASD, and no mental health services because I just don't fit in their boxes/am "inappropriate" for their services. Although there will be letters stating this, I cannot get hold of copies because they are allowed to withhold upsetting judgemental stuff about mental health from you. A helpful MH professional compiled some evidence for me and sent it through to my GP for me to pick up - GP wouldn't let me have a copy as it "contains confidential information about [your] mental health"!!!! Naturally I had to pay £30 for a GP letter instead, if I wanted anything.

Otherwise evidence is only letter from autism service outlining the (recent) diagnosis and things I struggle with - I cannot get anything more tailored to the situation. There seems to be an assumption that people have support and carers and professionals involved when actually there's little professionals could do and no services anyway!

I'm so very tired of living. Would be nice to know I'm not alone dealing with this stupid, cruel, humiliating system. I just can't bear the way it makes things worse - I am trying so hard to build a proper life and it just knocks me down again and again.

[imsorryiasked]

Didn't want to read and run. I have no experience but it sounds awful. Sorry you're having to battle with this rather than concentrating on the important stuff.

[thegreatbeyond]

Do you have a local autistic society? I wonder if you could see if they could help with anything, if so.

[cafesociety]

I fully sympathise. My assessment also included lies, my doctors letters/diagnosis ignored, I was appalled. Told I was ok because I gave eye contact, and got there on my own [like you, I had no one who could come with me]. Apparently I wasn't nervous either...I'd had 2 hours sleep, was in a hell of a state in my head, sweating, nauseous and about to throw up!

I also have a mental health condition which I was granted DLA for life for. The interviewer had no idea about the condition whatsoever, didn't have a clue. My advisor told me mental health issues are the ones targeted and hardest to get PIP for because of the way the points are allocated [purely to take into account the severest of physical/mobility problems] .

My health actually deteriorated afterwards and I was unwell, anxious, depressed and ready to give up, my sleeping was awful, stress levels off the wall, it was affecting my whole life detrimentally. I couldn't face appeal, just couldn't do it and have the stress stretching out in front of me for months on end...I had no support, I knew it would make me worse than ever and I was pretty bad, seriously.

I gave up and now forego any social life which I cannot afford, and my life is restricted a lot in other ways too. I stay at home. I gave up as I am retired now, and I had an inheritance as luck would have it, which has been a life saver and a bit of a back up. My finances are extremely tight, I have to keep a house/bills/upkeep going on my own, it's tough.

The whole process is flawed, morally skewed and probably illegal, abusing people's rights in the process as it does. If I was you I would fight it, appeal, appeal again and go through the whole process with the support of an advocate from a mental health charity/support group. Mine was useless but I'm sure you will be luckier. The sooner someone blows the whistle on this travesty the better, it's almost criminal and the cause of so much turmoil and disrupted/harmed lives of those who are already struggling with their disabilities. As if they care. Best of luck.

[Thecreosotekid]

You aren’t alone. It’s totally shit. I had to re-apply after getting lowest rate of DLA and PIP application was rejected. Because I see friends and can cook/clean and shower slowly and with pain and difficulty, I’m A-OK. Again there wasn’t much ‘evidence’ I could provide as my condition has no cure and other than including what painkillers I take and proof of rheumatology and physio treatment there’s not a lot I can provide. Because I can usually get partially dislocated joints back into place myself and have a selection of ankle and wrist braces I use as and when that’s also absolutely fine. The fact that I tore a ligament in my foot just walking which seriously limited how much I could walk for about 2 years, it’s ok because it’s not too painful now. The extra money was a big help with taxi fares when I’m too sore/injured to take public transport and with train fares when I need to go to ththe National Orthopaedic Hospital which specialises in the condition I have. I can’t get the same input locally as I get there. But I can struggle on therefore it’s ok and I don’t need help apparently.

I agree can you contact the National Autistic Society for advice and then appeal the decision? But no, you are most definitely not on your own .

[ineedaknittedhat]

I really feel for you and this is what has put me off applying for pip. I'm also autistic and am struggling with holding down part time night shifts. Medication gets me into work and sort of helps me cope, but I won't be able to sustain it for much longer and I'm in my 40s.

I think perhaps the national autistic society may be able to help. There will probably be a disability charity in your area who can help you with the process.

[Home77]

Yes, I understand - have just been through the same also for mental health. It seems to be all about ticking boxes, the one for mental health they seem to like is if you have 'ongoing specialist mental health input' but who gets that long term? such as being in care of secondary services. I was fine with PIP while that was the case but not since being discharged - I have only been able to get it back once I explained the psychiatrist has said they are on call with the GP and that was considered 'ongoing input'. A lady posting on here, who used to be an assessor, said this also - that they were advised MH patents needed to have ongoing 'input'. However it doesn't mean that if you haven't you don't need support.

[ineedaknittedhat]

Ongoing input? Huh, we should be so lucky. In my experience, it's only psychosis or being a danger to others that'll obtain you ongoing input.

Thousands of people are living lives of utter desperation because of unsupported mental health difficulties and/or autism. How can they withdraw mental health support then discriminate against people because they don't receive mental health support?

We're living a Kafka novel. Seriously.

[Home77]

I agree. I do have a condition with psychosis and even then this is what they said. Even when having a crisis plan in place and mental health directives etc and a care plan. Still that was not enough evidence as have been discharged from Recovery and do not have a Care co-ordinator anymore. It's rubbish.

[Home77]

here is a topic where the CAB advisors are discussing the same thing..

www.rightsnet.org.uk/forums/viewthread/12667/

[MadImFurious]

Thanks for the replies. Struggling to find a way to keep going.

[TheSquatLobster]

So sorry to hear your story OP, and those of other PPs. The whole assesment procedure is appalling, and completely unfit for purpose.

Have you asked the specialist for a copy of their report directly? They obviously considered it appropriate for you to read.

I can only imagine how overwhemed you feel by it all, but I would advise you to appeal if you can possibly face it - but try and build a team around you, to help and support you through it as it is exhausting at a time when you're feeling at your lowest.

Have you tried CAB or any other financial advisors in your area? And what is your MP like? Please consider asking them to add a letter of support to your appeal.

I'm a personal assistant to a person whose physical disability affects their cognitive ability too. Their ESA was stopped in 2017 without good reason or proper process. I started working with them several months later, by which time they were deeply in debt and having severe mental health problems.

We sought advice from a local money advice organisation, which helped my client submit an appeal, and our MP was absolutely fantastic, providing a letter of support to go with it and chasing it up when nothing happened. I also gathered a lot of background information from disability forums on FB. ATOS Miracles, Disability News Service and The Canary are all useful.

I don't think we would have got the result that we eventually did, without their help. We found the professional advisors knew how to word things, using key words & phrases to describe my client's symptoms that we might not necessarily have used. The fact that the appeal came via professionals carried more weight, I think, and the MP's letter ensured that they knew they would be held to account if their decision was not scrupulously fair.

My client had an added complication in that we are in a universal credit area, so they were originally told that they could not be put back onto ESA but would have to apply for UC.

After several months fighting we eventually got them reinstated on ESA at appeal but, if it had been turned down, we would have appealed to the independent tribunal which has a higher success rate than you might expect. It feels like the DWP has set up the whole system to try and wear you down and make you give up before you get there though, and it takes a lot of energy to keep fighting.

Mental health problems suck, and only you can make the decision whether to appeal or not in your circumstances, but whatever you do decide will be right for you. Sincere good wishes to you for the future, whatever you decide to do.

[dangermouseisace]

It’s not you, OP, it’s the system.

So, so many people have to go through to tribunal to get what they are entitled to. It’s a horrible, cruel way about things.

Have you tried CAB? Our local one is always very busy with PIP appeals, and has specially trained advisors to go through the paperwork with clients.

[BrendasUmbrella]

How can they withdraw mental health support then discriminate against people because they don't receive mental health support?

Quoting because it needs to be said multiple times. What a cruel country we're living in.

[MadImFurious]

Thanks.
Dangermouse our local CAB is so overrun (deprived area) that I won't be able to see them in time.
Actually I'm ok at the forms, and letters, it's the medical evidence that I fall down on. If I'm not seeing anyone what am I supposed to use? I've waited 3 months for the autism diagnostic service to answer this question, when I tried to check up I was so distressed they sent the police round to check I was alive (they broke in). Incredibly, this still doesn't provoke anyone to actually be helpful. And God knows why the GP is being so awkward. But they can and are refusing me access to "distressing" MH info. GP says he's happy to answer DWP directly but I'm not allowed the info. - how do I get around this??!
Struggling with suicidal feelings today. Trying to remember it's the system not me.

[blueangel1]

OP, I was a trade union rep for nearly 20 years and because of that I've done a lot of work with people who have all sorts of health issues. If you want to DM me I could try and help you put together evidence for an appeal.

[MadImFurious]

That's very kind blueangel. The real difficulty seems to be accessing the evidence from GP because I'm not allowed to see it. Is there any way around this?

[Home77]

You should be able to get a print out of your conditions and meds from the GP, if you ask the receptionist. maybe could speak to practice manager about the situation and explain that the letters could help your application?

[Home77]

I aso have 'distressing' letters from the MH team but they seemed not to mind sending me them. Seems a bit strange doesn't it how it varies from place to place.

[Home77]

Another thing, i suppose you could ask Atos or DWP their advice in this situation as they do have some thing where they are supposed to support vulnerable clients etc. Maybe if you explain the situation they might contact GP. you never know. Due to the specific situation.

[Soontobe60]

Has the person who sent evidence to you GP actually given permission for your GP to share it with you? The GP would need that. Can you ask the GP for a copy of all your medical records? You are legally entitled to this information.

[AntsDeck]

OP - you could contact Fightback4Justice - they have a Facebook page.

Massive help and will also attend assessments, tribunals with you 💐

[Home77]

www.nhs.uk/using-the-nhs/about-the-nhs/how-to-access-your-health-records/

Heard mixed things about Fightback- they take a cut of the benefits I think. There are free places to help as well.

[Home77]

Wonder if this might be of help?

www.kdc.org.uk/wp-content/uploads/file/Supporting%20PIP%20claimants%20who%20are%20in%20a%20vulnerable%20situation.pdf

[blueangel1]

@MadImFurious I would have thought the easiest way is to ask your GP direct. The DWP won't share this stuff but you have a right to see any medical practitioner's records that are about you. I would go there first, and any other psychologist /counsellor that you've seen.

[SingaSong12]

I’m sorry all this is so rubbish-I volunteer at cab and you are not alone. (I also have adult diagnosis ASD and struggle because there is no support in my area.)

Could you write to the DWP copying to the Tribunal explaining that you cannot access the relevant sections of your relevant medical records. Ask them to request this, even if they will not disclose to you. Include a consent to the GP to release the information. Send copies of these to the GP, tribunal and person who put together the pack.

Even if the DWP does nothing or GP/health professionals don’t cooperate it shows the tribunal members that there is extra evidence and you have done your best to get it.