I’m crushed 😞 PIP zero points
Comments
-
I have never found the mandatory reconsideration very helpful, it is more a step in the process to take them to tribunal.
2 years before I was diagnosed as terminal I had most of the problems I had when I was terminal, but they actually got my condition wrong, when I applied for MR they upheld the decision and told me that their decision was 100% accurate?
I took it to tribunal and still scored nil points, despite the fact that I showed them that they had messed up my report with someone else's report with a completely different condition.
2 years later I got full PIP under special rules for the same condition.0 -
I got zero point then appealed and got 6 points for the care, then a tribunal date come through and got a phone call at 8 one night to give me top mobility if i don't go through with the tribunal …
1 -
@Steboro wow! I’m so glad you got what was right in the end 😁
1 -
@Myhappy256 oh my goodness that s just awful!! You should never have been put through that 😞
1 -
The problem is everyone with autism is different, theres not 2 autistic people the same. Also GP letters are pretty much useless when it comes to PIP, as they can only say you have a condition and not how the condition affects you as they don't see you at home. The best way for PIP is to list everything and how the condition affects you with real world examples. Also if you have anyone who witnesses these things.
I've never had a PIP assessment, I've always had a paper based assessment for both my PIP and LCWRA with long awards for both.
Also getting diagnosed at a late stage could also be a reason why. Most people see that you have managed with the condition all your life, so theres no change that merits an award. As most of the time they are only interested if conditions start up, change, or get worst.
2 -
@rubin16 I did state in the MR that I’ve masked for so many years to the detriment of my mental health, a restriction on everything I do in life when others don’t think twice about things. It’s only now that everything makes sense and how I’ve not lived a NT life, I need to have autism therapy to work out how to deal with things. Hence asking for pip ☺️
1 -
Rubin, You have articulated my thoughts in regards to my own situation word for word in your statement as I have struggled to "verbally" explain things in this way. I also struggle with "writing down" my thoughts down too so thank you for your post as it has helped me feel less alone in what im feeling ….
Im 51 and have struggled with explaining things pertaining to my autism recently and how it affects me simply because its only been in the past year or so that ive realised I have it, but the problem im having now is trying to navigate this new world I find myself in with no support simply because Ive been told there is a 2 1/2 year waiting list to get formally diagnosed which has now left me feeling im in limbo….
Im having to look at my past and past behaviours with new eyes and understanding and facing the fact that I have been "masking" all these years, but with no support whatsoever to help me understand things. I just feel so alone which makes things so very difficult for me especially when trying to ask for help.
Ive also realised that I find it extremely difficult to "ask" for help too. I have been trying my best to explain things properly to care providers but I find my words come out all flustered, fast and wrong and by then an appointment has finished and I end up being misunderstood or not taken seriously so I understand why I may not be getting the help and support I need because im not explaining things properly…To be honest im just EXHAUSTED now! Mentally, physically and emotionally…(Im in burnout and shutdown mode)
I feel at this point in my life I need an advocate to help speak for me which ive been trying to ask for, but it seems like I need to find an advocate to help me get an advocate if you know what I mean ha ha
I just feel so stuck!
0 -
I feel EXACTLY like you do Everythingzrosie. I too believe I need autism therapy but when one is not "formally" diagnosed like myself, that service and support is very difficult to get on the NHS. Im assuming youve been diagnosed??? And if so may I ask how long Drs are saying you have to wait to receive the autism therapy?
Just thought id also share an insightful video I watched the other day in regards to late diagnosed autism in women
https://www.youtube.co
m/watch?v=G5qRbrkPq80&t=1s
1 -
It is a hard situation, Masking can be physically and mentally exhausting and eventually wears out. I know women are better at masking than men so are alot harder to diagnose, I was diagnosed when I was in my late teens at college. But the assessments are different now. I was only not diagnosed as a child becuase I had a neglectful mother, but I showed all the signs, not talking till I was 5, not giving eye contact, stimming etc. I also struggle with emotions or understanding peoples emotions, and pretty much do the same thing each and every day. It took me 10 years to develop my routine so I can now only just goto the shops on my own. (It has to have a self checkout though, and I only shop in places I've been before, and know where the item is. If they moved the item it throws me off).
I'm lucky though as I have support in place and have weekly visits from my support worker, and bi-weekly visits from a social worker and STR worker. Although I have the exact same problem as you. If someone asks me if I need help I always so no. I don't know why but its like I switch into auto pleasing mode and its always Do you need anything? no I'm fine. when in reality I could be struggling that week or something. I think it has something to do with I just want to be on my own again/anxiety thing, but also the easy route to take.
Also Autism wasn't really recognised 30+ years ago, it was known but not as recognisable as it is today. Its only fairly recently that is has becoming a known thing, and people are realising they have it and going for assessments. (hence the huge backlog) My family had never even heard of autism or what it was when I was a kid. It was only when I finally started going college it was picked up on by support staff. I'm 34 now.
Finally PIP is like a lottery system, you either get an assessor who understands autism, or one who doesn't. Same for the decision maker. I've seen physio assessors do autism pip assessments and score that person 0 before. Its not all lost though, you can be lucky with another decision maker at MR stage or failing that Tribunals (even though I've never had to go that far) are more understanding from what I've seen.
Goodluck.
2 -
You have such a beautiful way with words Rubin and articulate yourself so well….Im so glad to hear you have got support to help you in your journey…..Unfortunately, I dont, despite me literally begging for help…
I had an assessment recently from Adult social services after being referred by my GP as i've been really struggling with my mental health and am struggling with daily tasks but to cut a very VERY long story short the lady who visited me in my home said if I had autism and an IQ under 50 there is not much help with what they can give me. To be honest I didn't understand what she ment but kind of did just couldn't articulate myself there and then and didn't question her statement because I had automatically shut down after seeing her facial expressions and knew she wasn't going to offer me help (Which was half way through the assessment) I dont even think she realised how hard it was for me to talk despite me repeatedly telling her that I am in burnout mode and am struggling…
Like you mentioned earlier autism manifests itself differently for different people hence why they call it a spectrum disorder but for me I feel that because ive "masked" and still "mask" so well, Im not seen as being entitled to help from social services because in their eyes because I appear too look Ok despite me not being Ok. Also, all she kept saying to me was she feels I need mental health help and will refer me to talking therapies (I need more than talking therapies in my opinion because I dont just need to talk, I need someone to help me understand how to deal with my struggles and most importantly have a skilled knowledge in autism, but not just autism in people with learning disabilities which the assessor only seemed to have)
Also, one of the tics I suffer with having Tourette's syndrome is it causes me to hit myself so im in daily chronic pain but I feel this side of my illness was dismissed in my assessment because all she kept talking about was the mental health side of things and despite me trying to explain how my physical health struggles affect my mental health struggles and vice versa I feel my delivery of how I was feeling was not being understood by her. I understand I probably didnt make myself clear but thats because of my illness (I was feeling very overwhelmed, anxious, nervous as well as struggling to talk) I also asked a few weeks before the assessment if I could have an independent mental health care advocate present with me at the assessment to help me as im struggling to talk and retain information and dont have anyone to help me but they told me no…
I struggle with my daily living tasks because im in pain physically BUT I also struggle with doing my daily tasks because of my autism and other mental health struggles, however it seems like you can only get help and support for one OR the other, not for "both' at the same time. Ive struggled with these tasks for YEARS but its only been recently that my struggles are more obvious to people because I cannot mask any more hence me asking for help…
It seems comorbid health challenges are very difficult to get help for at the same time (health needs and social care needs) well for me it most definitely has…All ive been asking whilst being in crisis mode is for a social worker to be allocated to me for the first time in my life to help me articulate what goes on with me and to support me in help with reaching out to service providers, filling in forms, making calls and general encouragement as I struggle to do this clearly myself but was told I cannot have one. She did mention why I can't be provided one at the assessment but I still dont understand why I cant have one and cant remember what she exactly said (remember I shut down at that point so nothing she was saying to me made sense and I cant remember her reasonings)
Im not sure where to go from here now. I feel so confused and am completely exhausted!!!
"They" say to reach out if your struggling BUT I have been trying my best to reach out and still not getting any help. I need communication support and actual physical support, but because I can somewhat explain what is going on with me it seems im looked at as being Ok by service providers and the right support has not been given to me (P.s despite me knowing I need support im not sure what that support actually fully looks like, but thats because Im struggling with putting words out from my brain/thoughts in to words)
The word "Help" is such a lovely word in the dictionary however when it comes to actually receiving the help its definitely been proving difficult for me to receive…I must be doing something wrong
P. sorry if my message sounds all mumbo jumbo…Im not used to writing down my thoughts or trying to explain my struggles/illness on forums such as this one
Take care
0 -
I few years back I was on enhanced rate and they done a review and gave me the basic rate so I did a MR and less than a week later they changed their decision and awarded me enhanced rate again, so its very worth while appealing if that fails go to a tribunal as I believe you can sit down with the tribunal and explain your case in detail, I hope your MR decision goes in your favour :)
2 -
@Kiki23 I got diagnosed with Clinical Partners, I went for Right to Choose on the NHS. My whole process was 10 months long. I honestly had ‘imposter syndrome’ where I thought health professionals would tell me to stop wasting their time. To say I was knocked down with a crash was when I had my call to tell me the outcome.
I know any help via the NHS is going to take years. SO PIP would help me pay privately.1 -
Good morning @Everythingzrosie
I hope this message finds you well…
Can I ask how you got diagnosed with Clinical Partners. Like what did you have to do on your part???
Ive been seeing "Right To Choose" on a few posts on here but haven't got the foggiest how to get the process started. Do I have to go back to my GP and ask her to apply/refer me or can I do it myself?
Any information would be greatly appreciated as the thought of me waiting 2 years for my NHS autism assessment at the age of 51 has left me feeling very depressed
Kind regards
1 -
I will be right back with a link and explain x
0 -
@Kiki23 .
0 -
@Kiki23 so I asked my gp todo a referral to my chosen company. I checked they did Right to Chose NHS firstly. The wait time last year wasn’t long due to it being little known publicly. It’s becoming more known so the lists are longer but not as long as waiting for the NHS.
I was treated with so much respect. I was explained clearly at each step. The 3 hour assessment on the phone was broken into two. So we had a 15 minute break.
the other assessment was via video link. I find these very difficult but it’s important because the psychologist could observe my face.
all in all it was a positive experience. I got a 27 page detailed report with lots of recommendations to help myself. I’m getting through these at my own pace. I bought the book and it’s taken me 6 months to pick it up and read.0 -
so I’ve just looked and my goodness things have changed in a year!! I’m so sorry to have built you up and now showing this to you 😟 this is just one company though. Hopefully with research you will find a company with less wait time x0 -
I was diagnosed with autism when I was 18 and we started the process when I was 10
0 -
What do you mean? DWP contacted you and said they will give you the higher rate of mobility if you dont go ahead with he tribunal?
0 -
What do you mean? DWP contacted you and said they will give you the higher rate of mobility if you dont go ahead with he tribunal? YES
0
Categories
- All Categories
- 15.3K Start here and say hello!
- 7.2K Coffee lounge
- 89 Games den
- 1.7K People power
- 118 Announcements and information
- 24K Talk about life
- 5.8K Everyday life
- 414 Current affairs
- 2.4K Families and carers
- 868 Education and skills
- 1.9K Work
- 526 Money and bills
- 3.6K Housing and independent living
- 1K Transport and travel
- 626 Relationships
- 1.5K Mental health and wellbeing
- 2.4K Talk about your impairment
- 863 Rare, invisible, and undiagnosed conditions
- 923 Neurological impairments and pain
- 2.1K Cerebral Palsy Network
- 1.2K Autism and neurodiversity
- 39.5K Talk about your benefits
- 6K Employment and Support Allowance (ESA)
- 19.6K PIP, DLA, ADP and AA
- 8.3K Universal Credit (UC)
- 5.7K Benefits and income