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Neurodiverse Mumsnetters

Use this forum to discuss neurodiverse parenting.

PIP

29 replies

Myadhdusername · 23/02/2022 02:46

Is it even worth trying?

One minute I think 'I am an articulate woman and am able to explain how my ADHD affects my life and means that I struggle with Daily Living' then next I think 'how on earth do you convince someone that just because you physically can cook a meal doesn't mean you can?'

The forms are so geared up towards physical disabilities it's actually a disgrace. Yes, I can bath/shower alone but leave me to my own devices and will I?

Just in case anyone reads this who hasn't hyper focused on PIP yet - yes you can get it for ADHD, you don't need a diagnosis you just need to be able to show and explain how it affects your life and it's not means tested.

I'm on a few groups on Facebook and months ago I reached out to a charity who can assist with the forms but I just don't know if I have it in me tbh. The percentage of people who receive it after just one application is small I think and having to deal with all of the admin in order to get to tribunal is just ADHD hell!

Any success stories for me? Smile

OP posts:
ItsCanardBruv · 23/02/2022 03:39

I get PIP for MH and am currently awaiting the results of an “upgrade” as I’ve been diagnosed autistic since my initial application.

It is as you say. “Canard needs to be promoted to wash and get dressed”. Which is PIP form code for “canard can get herself in a right state, doesn’t wash her hair for a week and sleeps in her clothes. Her wardrobe staples are pyjamas and dry shampoo”.

“Canard needs to be promoted to prepare a meal”.

Code for “canard would happily live off weetabix for weeks on end”.

It’s a bit of an art form filling in the blasted forms but the charities do great work. I joined benefits & work and used their guides - don’t forget - what is normal for us is perhaps not normal by societal standards. Eg the stack of unopened bills shoved behind the bread bin.

And this “prompted” thing is that you really ought have some help, but maybe you don’t.

I got PIP with a paper-assessment (ie no visit or call) first time I applied.

broccolibush · 23/02/2022 04:14

Hi I get higher rate PIP for both elements due to the mental health issues I have and the difficulties caused to me by ASD. I got this on first application without any appeal needed.

I filled the form in on the urging of my CPN and didn’t expect to receive anything as, like you say, I’m an articulate woman who is very capable of physically doing things it’s just that I can’t do lots of things, or indeed anything, most days.

I think the assessors are much better at understanding the impact of non-physical disabilities on daily living these days and as a result if you give them all the information about how you are affected they’ll make an appropriate award.

I remember writing “whilst I am physically able to do xyz” for most things and then go on to explain what is difficult and what happens (not eating, being unable to dress in spite of the ASD appropriate wardrobe etc) and also why.

Whilst it’s not the shortest of forms it’s quite straightforward to fill out and you don’t have anything to lose in completing it.

BarrowInFurnessRailwayStation · 23/02/2022 08:17

I've thought about applying, but just can't face it. I am in a right state with anxiety etc., but I can still potter about and do stuff - as long as I can avoid other people - dh has to help me on the phone though. I can't be arsed to cook because I've just lost the ability to concentrate on anything, I'd quite happily live on cornflakes.

I know I wouldn't cope with the process of applying for PIP, even with help. NTs just infuriate me and I come across badly due to frustration and then anger.

It is worth doing and you should do it if you possibly can though, don't let me put you off 😄

SuperLoudPoppingAction · 23/02/2022 08:25

One of the things that helped me was keeping a diary for 2 weeks so I could say 'based on my diary I manage to go out with support 3 days out of 7, so I don't manage to go out over 50% of the time'.
It helped me to log when I tried to cook and had some kind of disaster.
Also things like when I showered, changed into clean clothes.

I looked for guides for autistic people for pip forms online which were a good starting point.
I got people working with me to write supporting letters.

I got pip on the first application whereas when I tried years ago just based on filling in the paper form, I didn't.

Myadhdusername · 23/02/2022 08:38

Oh these replies are great! Good to hear some of you actually managed to get it and at first try too. Wow!!

I think it's probably worth a shot isn't it?

I was actually reading some of the appeals last night and (no harm to them) but you can see from what people write why they might not be given the points at first. I thought it might even be helpful to quote their own appeal decisions at then where relevant?

I think constantly saying 'due to the executive function issues caused by my ADHD ...' etc is a good thing to do. Would it be worth including a brief list of the symptoms of ADHD and then referring back to it so you think? I think I need to imagine I'm speaking to someone who has never heard of it.

OP posts:
BarrowInFurnessRailwayStation · 23/02/2022 10:04

I think constantly saying 'due to the executive function issues caused by my ADHD ...' etc is a good thing to do. Would it be worth including a brief list of the symptoms of ADHD and then referring back to it so you think? I think I need to imagine I'm speaking to someone who has never heard of it.

Yes, that does sound like a good idea.

broccolibush · 23/02/2022 10:27

I think bringing it back to your condition will be very helpful for the assessor, and maybe "as stated in response to question 7 blah blah blah" or similar. It's also possibly worth going through it with someone NT (in my case DH) so you can work out how much of what you do isn't straightforward/"normal" and how you can explain it to the assessors.

Myadhdusername · 23/02/2022 10:31

Great. I am feeling a bit more positive about it.

I'll update this thread with my progress just in case it helps anyone else.

OP posts:
PangoPurrl · 23/02/2022 10:47

Wow, I had no idea you could get PIP for ADHD. I have a fluctuating physical health condition atm, and am getting PIP as when I'm at my worst I can't walk/stand without help. I have horrid memories of the application process, partly because at the time I had medication induced brain fog and it took me 3 weeks to complete the forms, but also because I knew several people who were way more disabled than me but had been turned down because they'd answered the questions from the point of view of how they were on a 'good day'. So if you can, get help with the application, read up on how they actually score your answers (I'm assuming it's still done on an overall points system) and answer the questions based on a 'bad day', ie even if you manage to do things some days, if you can't do that thing more often than not then that doesn't count. I deeply feel for people that just can't handle applying, I found it near impossible and yet in a previous life I was a complex care professional and used to help people with forms, amongst many other things!

SuperLoudPoppingAction · 23/02/2022 11:05

The 'on a bad day' advice has changed a bit, I think.
That's why I did the diary so I could say how often my bad days were - it made it more accurate. And also gave a sense of a 'good day' being quite relative.

CorrBlimeyGG · 23/02/2022 11:14

Eg the stack of unopened bills shoved behind the bread bin.

I showed my assessor my pile of unopened post. She wrote in the report that she had seen it but had not been able to verify that it was mine! Maybe next time I'll tell them I like stuffing hundreds of envelopes with paper with my name and address on?!!

PangoPurrl · 23/02/2022 11:53

@SuperLoudPoppingAction

The 'on a bad day' advice has changed a bit, I think. That's why I did the diary so I could say how often my bad days were - it made it more accurate. And also gave a sense of a 'good day' being quite relative.
Oh gosh, apologies for giving out of date info. In that case ignore the rest of my post OP, but hopefully the reading up on how they score your answers/what points you need part is still helpful!
StarCat2020 · 23/02/2022 12:30

Do you find that without medication you are a bit rubbish at things?

I hate the way that I am often without my medication for a few days each month (shit GP) and it makes me hopeless.

BlankTimes · 24/02/2022 03:55

ADHD features in this week's Benefits and Work Newsletter
www.benefitsandwork.co.uk/news/claiming-pip-for-adults-with-add-adhd

I'd strongly advise you to get their PIP guides, you have to join for year's membership then their guides are free.

The CAB website is also good for helping to fill out the forms.
www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/

Do remember that you don't have points awarded for any particular condition, you have points awarded for what you cannot do in certain daily living and mobility situations, explaining that can be tricky, but not impossible.
An answer like 'My executive function challenges make it impossible for me to complete that task' will not be enough of an explanation, whereas a breakdown of exactly why you struggle to complete that task will be more readily accepted.

Do include any diagnostic reports for your condition(s). they are useful to refer to.

If you have sensory issues that affect your daily living, it may be worthwhile having an assessment as an adult, as it's more documentary evidence.
www.theottoolbox.com/adult-sensory-processing-disorder/
www.dyspraxiauk.com/sensoryprofiling.php

The boxes on the form are quite small and don't allow for a tidy presentation if like me you make a mistake or need to add things. I did DD's PIP in Word then printed it out, do make sure your name and NI Number and any other ID details they need is on each printed sheet.
I also included a copy of each relevant report or medical investigation, with an indexed list of the main points.

Despite DD having had indefinite DLA (and a Blue Badge) from a young age and plenty medical reports and diagnoses, the DWP were adamant she didn't have enough points and we had to go to MR and then Tribunal but it was eventually worth it as she now has the Judge's ruling for enhanced awards of both components and his terminology that 'it is inappropriate to set a term' means it's as near as we can get to a 'light' review every 10 years.

It does seem to be the luck of the draw, some people absolutely sail through the process and have a fair award at the outset, others like me have to grit their teeth and fight at every turn, but all I can say is use all the help that's available, do apply and IF it's refused, appeal every time.
Stick at it, it's worth it, even if it seems hopeless, carry on Smile

RainbowZebraWarrior · 24/02/2022 10:57

Yes, I get PIP. Mainly due to debilitating physical disability, but the areas I struggle with due to Neurodiversity are covered a lot. Yes the process is very very hard. But I have no partner to support me so I absolutely had to bite the bullet. I can't live on nothing.

Anyway, I feel the process is now very inclusive of emotional/ mental health and not just physical health.
Examples:

Eating and drinking: need to be prompted or will often go without

Managing treatments: Need assistance / prompting

Washing and bathing: will often forget or simply cannot organise self. Only wash hair every 2 months

Planning and following a journey - I can't. Dad has to take me. Even then it makes me ill. Only undertake necessary journeys eg hospital.

Medication - have to be prompted / reminded.

Mixing with other people - can't / don't / won't. Avoid. Anxious ness. Makes me ill.

Preparing food: terrible at forgetting / get angry and upset. Often abandon

Eating food: sensory sensory etc.

There are also questions on managing money (so perhaps someone might do that for you / need help)

And Talking, listening and understanding is also a category. In this instance I'd use examples of when this is not possible (e.g. Autistic shutdown / meltdown)

Some of these are genuine examples of mine - alough extremely brief / vague. Others are suggestions which I'd say ould relate to lot of Austism or ADHD struggles.

PaddingtonPaddington · 05/06/2022 21:38

Myadhdusername · 23/02/2022 10:31

Great. I am feeling a bit more positive about it.

I'll update this thread with my progress just in case it helps anyone else.

Hi @Myadhdusername I came across your thread and wondered how you’re getting on? I’m trying to help my DD 17 with ADHD to complete the forms.

BlankTimes · 05/06/2022 23:51

@PaddingtonPaddington

You can complete the forms and speak on the phone as your DD's appointee.

www.gov.uk/become-appointee-for-someone-claiming-benefits

pixie5121 · 07/06/2022 11:46

Has anyone with a fairly decent job been awarded PIP?

I have always felt like I shouldn't claim it, even when I was on shit wages, but I'm getting sick to death of how much money I spend directly because my autism and ADHD make it difficult or impossible otherwise.

For example, ordering in takeaways when I simply don't have the executive function to cook. This can be really pricey.

Needing to order groceries online, with a minimum spend and pay delivery because I can't manage crowded shops.

Weekly private therapy with a therapist specialising in autism because the NHS can't provide that (or anything).

And then there's the obvious disadvantage of being a single earner household, with the autism and ADHD making it difficult to find and maintain relationships in the first place. It feels like I am literally spending hundreds and hundreds of pounds a month directly because of being ND....it feels like a tax. It actually makes me really angry to think about how enormously financially disadvantaged I am because of conditions I didn't choose to have.

I'm petrified of basically being considered a scammer and having my job and salary held against me. Yes, I am fortunate to be on a good wage now, after years and years of struggles and poverty, but I'm still spending over half my disposable income on dealing with my disabilities. And the job I have requires many reasonable adjustments to be able to do it, such as WFH most of the time, a special space in the office, flexible hours, not ever being required to give presentations or attend large meetings. So it's not a case of 'you're well enough to do a well-paid job so there's nothing wrong with you'. I can literally only do this job because they accommodate me so much. Before this, I never had a permanent job.

Have I got a hope in hell of actually being awarded PIP?

Suddha · 07/06/2022 14:03

I tried ages ago and I couldn’t get PIP because my husband supports me and because I’m physically able.

I don’t handle any money or bills - he does it because I can’t - so therefore I can’t prove that I experience difficulties handling money and bills because it’s not something that I ever try to do. I’m physically capable of working just nobody will employ me because I’m autistic and interviewers don’t like me - but being unable to get hired because of social and personal issues doesn’t count as being unable to work.

I struggle to take medication because I can’t remember, which means I have to use alarms - and then I turn the alarm off because I find the noise intrusive and upsetting, so I end up not taking the meds. But I CAN physically take the meds and I CAN use an alarm, I just don’t.

Same with the other stuff. I CAN get dressed and washed, I just don’t. I CAN cook food, I just don’t - unless my husband makes me. I CAN communicate and socialise, I just don’t because people don’t want me around and masking is exhausting.

PIP is aimed largely at physical disability. If you physically can do stuff but don’t because of mental health issues, they don’t want to know.

pixie5121 · 07/06/2022 14:07

I think cognitive functioning impairment very much falls into 'can't' rather than 'won't'. I'm sure it's a nightmare to convince an assessor of that, though.

user837433 · 07/06/2022 14:49

Its such a difficult one. Personally I do consider myself independent so I know the few points I would score could be argued. I just calculated 5 at a push. (Moderate dyslexia and combined ADHD so not mild in any way) I have spent money on aids, assessments etc. so I can see why some people would want to claim that money back.

There are lots of free resources, techniques to put in place for make life manageable like direct debits, freezer meals/slow cooker/microwave etc. online CBT/charity. How to ADHD YouTube vid is a brilliant resource. PIP is such a horrible system for anyone who needs it.

broccolibush · 07/06/2022 20:14

@pixie5121 I don’t earn myself but DH has a very good job so I didn’t claim anything for years. More fool me on the ESA front because I have a massive NI gap I now need to pay for even though I didn’t work because I couldn’t.

I do claim PIP because, like you, it costs us a lot for me to be ND. And whilst we can - did for a long time - cover the costs ourselves I do often feel that we should accept the help that is offered to us.

DH lost his job a few years back and had a long period out of work. Had I known then what I know now - and claimed what we would have been entitled to - the period would have been so much more manageable for me and I wouldn’t necessarily have been so ill from the stress. So now I see the income as a necessity for relieving extra stress which means I can function slightly.

jubileetrain · 07/06/2022 20:26

I'm waiting for the Scottish disability payment to open up in my area and I'm going to apply. I should have applied for PIP a long time ago but DH has a physical disability and we went through hell when he lost his job trying to get him PIP. It exhausted me to the point I refused to think about it. I stopped working a few years ago but I do get carers allowance now. He needs physical help but I need emotional and mental support. For years we both worked full time and now we are at the mercy of the DWP and it makes me feel like shit. I'm awful at dealing with things.

springisaroundthecorner · 07/06/2022 21:28

Hi. My son has been receiving DLA since he was diagnosed at age 7. There is also being adopted, attachment disorder, social and emotional difficulties. All have a huge impact on his daily life. He needs a lot more care and supervision that his friends and sometimes puts himself at risk. I'm amazed he might go from high rate DLA to zero PIP ?

SuperLoudPoppingAction · 07/06/2022 21:30

It's to do with the criteria changing, I think, from dla to pip. As I understand it (I never applied for dla), dla is at least partly about diagnoses whereas pip is about how you are affected in quite narrow settings such as being able to make food.
The first time I applied I kind of just listed what was going on for me but I was more systematic about it this time and that worked. I applied it specifically to their criteria.