MR phonecall questions

rosie118

I submitted my mandatory reconsideration letter about 11 weeks ago and just had an unplanned phone call. 

I am autistic and it's fair to say she completely tied me in knots to get the responses she wanted. 

On preparing food - she said if a meal appeared in front of me, could I heat it up in the microwave. If I could then I don't need help or supervision to cook meals. Is that right? If I can physically put it in the microwave I don't score any PIP points?

On communicating - she said this is only relevant if you are deaf or physically unable to talk. That understanding communication does not fall into this. That autism struggles can only score points for engaging with people, not communicating. Is that true?

poppy123456

If you are able to use a microwave to cook a simple meal but can't use a conventional cooker this should score 2 points.

Communicating can apply to an Autistic person it just depends on how your conditions affect you. Although my daughter didn't score points here either but she does struggle with communication but because she already had Enhanced daily living it was pointless challenging that.

chiarieds

Hi @rosie118 - to answer your questions, if you are unable to prepare a simple meal, but can use a microwave, for that activity you would get 2 points. For the communication activity, this certainly is relevant for anyone who is deaf etc., but not exclusively so as others, especially with mental health issues, can have difficulty with communicating too. So it can overlap with engaging with other people face to face, & points could be awarded for both activities.

rosie118

poppy123456 said:

If you are able to use a microwave to cook a simple meal but can't use a conventional cooker this should score 2 points.

Communicating can apply to an Autistic person it just depends on how your conditions affect you. Although my daughter didn't score points here either but she does struggle with communication but because she already had Enhanced daily living it was pointless challenging that.

Thanks for the reply. 

I explained that my issue is with processing food. Some days I can't process preparing food at all but most days I need help and prompting to do it. I said with the microwave thing it didn't take away that I would need my partner to hand it to me and support me in preparing it. More encouragement and reminding than anything. Otherwise I don't eat. She said prompting to eat was only relevant for depression and didn't make sense for autism? Asked me if I had considered that I have a 'phobia of food'!?

She claimed to understand autism but it didn't come across like that at all. 

She kept asking me 'why' I couldn't do things and I said I don't know? I'm not a consultant in autism? I just know my mind doesn't work the same way as others and struggles to get from 'I'm hungry' (if it can even get that far) to figuring out a meal infront of me. 

Really frustrated by the call and losing hope with any of this PIP claim thing. If the tribunal is going to be like that i just can't face being judged and spoken to like that again. 

rosie118

chiarieds said:

Hi @rosie118 - to answer your questions, if you are unable to prepare a simple meal, but can use a microwave, for that activity you would get 2 points. For the communication activity, this certainly is relevant for anyone who is deaf etc., but not exclusively so as others, especially with mental health issues, can have difficulty with communicating too. So it can overlap with engaging with other people face to face, & points could be awarded for both activities.

I did tell her though if my partner stood with me and guided me through cooking I could prepare a meal but I can't process it. I would need supervision and help. So I said a microwave wouldn't change that, I would still need my partner to encourage me and tell me to do it and how long for and what to use etc. It's processing all those little things that i can't do day to day when it overwhelms me. 

With communicating her example was 'you would be able to respond to a fire alarm'. Which is just about the most ridiculous example to say to an autistic person. I said, 'no, I wouldn't?'. She said that's not possible that you can work and not be able to respond to a fire alarm. Obviously a fire alarm is something most autistic people will struggle with. I would just hit sensory overload and panic mode and in no way be able to vacate safely through people. 

I didn't have the words to get her to understand and ended up giving up to be honest. She was just saying I was obviously capable of those things. She made it sound like PIP was only for physical disabilities and I know that isn't the case. 

poppy123456

It would be impossible to speculate anything at this point. Some people have random phone calls from a decision maker before they make a decision and some don't. About 50% of people successfully have the decision changed at MR stage. If you're not happy once the decision's been made then it's Tribunal.

If it gets to that stage and you haven't already sent anecdotal evidence then this is recommended and will be the best evidence you can send.

You can also get some expert advice from an agency near you and if you can get representation then even better. At the moment there's nothing more you can do but wait.

calcotti

rosie118 said:..On preparing food - she said if a meal appeared in front of me, could I heat it up in the microwave.

Which rather avoids the question of whether or not you can prepare said meal!

Waylay

Hey @rosie118
Some PIP assessors really don't understand some conditions, and many of them don't seem to understand the regulations they're supposed to be following!! 

The question she asked about using the microwave was, basically, wrong. It's not about heating/reheating an already prepared meal, but, as you tried to describe to her, preparing and cooking one, whether on the hob or using the microwave. 

Using your response to a fire alarm as a way to judge communication was also not correct! 

This kind of thing happens to lots of people (a minority of claimants, yes, but a large minority). Please don't give up if this happens - that's what they hope we'll do.

If you don't get the results that you think you are entitled to, please see if you can find help. The CAB, welfare rights, and other organisations may assist you. They can go through your claim with you and assess where you should probably have gotten points, which would give you an indication of whether an MR is a good idea for you. It sounds like you could benefit from having a representative, as autism can make it difficult to get your points across!

The next stage would be to hand in a Mandatory Reconsideration, which you can do on paper (again, help would be great with this). If you can't find help, there's tons of advice here, pipinfo.net is really useful, and if you don't mind paying ~£20, benefitsandwork has great guides!

You don't have to do another assessment for MR, although you may need to talk to someone on the phone.

If that doesn't work, tribunal is the next step. Tribunals are run by the courts, NOT DWP, and are usually much more understanding! 

Assessments suck. I'm sorry for the experience you had! It is generally much easier with help, and in my personal experience, nothing is as bad as the assessment!

idontlikeliving

@rosie118 reading your comments has really upset me. I’m so sorry you had to go through that. I’m fed up with these “health care professionals” being like this. They don’t understand at all. They cause so much stress for people. It’s unfair how we are treated. Sending my love to you and I hope you get what you deserve sweet xx

rosie118

@Waylay Thanks for the reply, it's nice to know I'm not going crazy and people agree it was wrong what she said. This was the call of the back of the MR. My original assessment report was just as ridiculous. I always knew it would be hard being autistic to get through this process and for them to understand but the toll it has taken on me is intense. I will wait for her letter to come through (she said 5 days) then I guess reach out for help with the tribunal. 

It's like she wanted me to justify why I couldn't do things but autism doesn't make sense? I said I get that it doesn't make sense that I can pass exams but can't cook for myself and make sure I eat every day but that is autism. It is being able to do some things and not others with no physical explanation. But she kept saying it was a legal thing and autism didn't fall under certain brackets and what I was saying didn't make sense to autism. 

I'm scared to go to tribunal and face the same accusations that essentially i'm just lying and autism can't affect me like that. But at the same time I know peoples experiences of tribunals are nicer. Does anyone know if they will actually understand autism? Are they doctors? 

@idontlikeliving thank you for the support  

@calcotti yes, exactly! I said that to her. I said but that isn't what PIP is asking? It's not asking if I can heat a meal up it's asking if I can get myself food, prepare and cook it. I repeatedly said my partner manages my food, checks that i eat, cooks for me, and without it when i lived alone i went days without eating, passed out and lost weight. But she just kept saying not being able to prepare food isn't an autism thing, i shouldn't even need prompting because of autism. 

Thanks everyone for the support. Honestly wouldn't be able to do this process without this forum. 

Waylay

@rosie118 She clearly doesn't understand autism!! And "a legal thing"? Uh....

Very occasionally one runs into an unpleasant tribunal member (there are usually 3 - a judge/lawyer, a doctor and a lay disability member (with lived experience), but my experience has overwhelmingly been that they:
- have a far deeper understanding of most disabilities than the assessors do,
- actually read your form, evidence and assessment thoroughly,
- know and apply the rules more than assessors and DMs do,
- are aware that assessments are sometimes not worth the paper they're written on, and
- don't assume that all claimants are probably lying from the get go. Refreshing!

That said, they move fast (lots of tribunals to do!), and tend to ask a lot of questions.  

poppy123456

rosie118 said:

It's like she wanted me to justify why I couldn't do things

Yes, that's exactly what you need to do. They don't need to understand Autism or any other conditions because we are all affected differently,  Remember that PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.

One of my daughter's conditions is Autism and she claims Enhanced for both parts. What you need to do is give a couple of real world examples of what happened the last time you attempted that activity for each descriptor that applies to you. Adding information such as where you were, what exactly happened, who (if anyone) seen it and what the consequences were. Anecdotal evidence is the best you can send.

For example, you say you can't prepare and cook a meal but can you do this with assistance? if so why is assistance needed and what happened the last time you tried to do this without assistance? If you can't cook a simple meal even without a assistance then why doesn't assistance help? You need to spell it out to them and provide those examples.

Dressing and undressing, do you need prompting to dress? Maybe you like to wear the same clothes everyday because you have favourite things to wear. Do you need prompting and reminding that you need to change your clothes because they are dirty?  Or maybe you need assistance to choose approprate clothing for the type of weather that day? My daughter needs prompting for both of these, otherwise she would wear the same clothes 7 days a week and wear Tshirts in the middle of Winter.

rosie118

poppy123456 said:

rosie118 said:

It's like she wanted me to justify why I couldn't do things

Yes, that's exactly what you need to do. They don't need to understand Autism or any other conditions because we are all affected differently,  Remember that PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.

One of my daughter's conditions is Autism and she claims Enhanced for both parts. What you need to do is give a couple of real world examples of what happened the last time you attempted that activity for each descriptor that applies to you. Adding information such as where you were, what exactly happened, who (if anyone) seen it and what the consequences were. Anecdotal evidence is the best you can send.

For example, you say you can't prepare and cook a meal but can you do this with assistance? if so why is assistance needed and what happened the last time you tried to do this without assistance? If you can't cook a simple meal even without a assistance then why doesn't assistance help? You need to spell it out to them and provide those examples.

Dressing and undressing, do you need prompting to dress? Maybe you like to wear the same clothes everyday because you have favourite things to wear. Do you need prompting and reminding that you need to change your clothes because they are dirty?  Or maybe you need assistance to choose approprate clothing for the type of weather that day? My daughter needs prompting for both of these, otherwise she would wear the same clothes 7 days a week and wear Tshirts in the middle of Winter.

Thanks for the reply and I think I'm not explaining myself very well on here. I did explain to her that I can't, and why, I said what happened last time I tried. I said I wish I could help my partner and the last time I tried I got so overwhelmed she walked back into the kitchen to me stood in the middle of the kitchen, ignoring the food and crying. I then had to go to bed and sleep off the overload. But she kept asking me why that happens to me. Like why my mind does that. I said i don't know? It's autism, i don't know why beyond that i am autistic and my mind struggles to process a lot in one go. 

idontlikeliving

rosie118 said:

poppy123456 said:

rosie118 said:

It's like she wanted me to justify why I couldn't do things

Yes, that's exactly what you need to do. They don't need to understand Autism or any other conditions because we are all affected differently,  Remember that PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.

One of my daughter's conditions is Autism and she claims Enhanced for both parts. What you need to do is give a couple of real world examples of what happened the last time you attempted that activity for each descriptor that applies to you. Adding information such as where you were, what exactly happened, who (if anyone) seen it and what the consequences were. Anecdotal evidence is the best you can send.

For example, you say you can't prepare and cook a meal but can you do this with assistance? if so why is assistance needed and what happened the last time you tried to do this without assistance? If you can't cook a simple meal even without a assistance then why doesn't assistance help? You need to spell it out to them and provide those examples.

Dressing and undressing, do you need prompting to dress? Maybe you like to wear the same clothes everyday because you have favourite things to wear. Do you need prompting and reminding that you need to change your clothes because they are dirty?  Or maybe you need assistance to choose approprate clothing for the type of weather that day? My daughter needs prompting for both of these, otherwise she would wear the same clothes 7 days a week and wear Tshirts in the middle of Winter.

Thanks for the reply and I think I'm not explaining myself very well on here. I did explain to her that I can't, and why, I said what happened last time I tried. I said I wish I could help my partner and the last time I tried I got so overwhelmed she walked back into the kitchen to me stood in the middle of the kitchen, ignoring the food and crying. I then had to go to bed and sleep off the overload. But she kept asking me why that happens to me. Like why my mind does that. I said i don't know? It's autism, i don't know why beyond that i am autistic and my mind struggles to process a lot in one go. 

Hi Rosie. I know what you mean. I don’t think some people on here are quite grasping what you are saying. 

I find it hard to explain things and get my point across and I don’t have autism so I can only imagine how hard it is for you. The way these HCP come across too, is so blunt so you kind of close up and forget even more how to word things. 

Do you have anyone who you can slowly explain to someone and they can be the person who speaks for you in the future? Xx lots of love xX

rosie118

So after coming to the decision that I would not pursue this further I decided to try and cook tea last night. I had the day off work and figured if this woman wasn't believing me and sayign I could do it, then I'd just do it! 

Obviously didn't exactly go well. It was just pasta and beans and I did manage to get it onto the plate finished. But then just stood, exhausted. My partner asked if I was okay. I said yeah. She asked if I was tired from cooking tea. I just stood and cried. I was mentally so drained. 

It's not fair that PIP don't believe me when that is my reality. 

The MR woman asked why I didn't have a GP letter backing up my 'claims'. I said I thought it didn't help to get letters from the GP/GPs won't do it. She said that's not true and it absolutely helps. 

Is it worth me asking my GP to back up that autism will have the above outcome on trying to cook? (Or can, very aware it is a spectrum!) 

I am now firmly in the camp of I will take to tribunal so any advice is honestly so appreciated. This whole thing is overwhelming and I hate it. But it's not fair that I am just not believed. So I do want to fight it. 

Yet to receive MR decision letter, probably today. 

rosie118

@idontlikeliving thanks for the reply, apologies for not getting back to you. 

I think I will reach out for proper help with the tribunal as I am clearly not doing a very good job at explaining myself. And I completely get what you mean. When the tone from her is hostile and accusatory (it very much felt like she was telling me I was making it up), it is even harder to think clearly. She honestly just tied me in knots. I didn't even know what I could do anymore. At one point I even said I will just agree with you so this call is done, which she seemed fine with! 

I'm really hoping I will be able to get an advisor for a tribunal so will need to figure that out I guess. So many hurdles and things to figure out. 

poppy123456

A letter from your GP telling them that Autism will have this or that affect on you will not help. PIP is not about a diagnosis, it's how those conditions affect you against the PIP descriptors.

A GP doesn't spend any time with you to know how you manage any of the activities. They will only know something if you tell them and this isn't evidence.

Autism is a spectrum and it affects people in very different ways. For example, my daughter has Autism (as well as other things) but for preparing a meal she does need assistance, without this it would be a complete disaster with burnt pans, uncooked and even burnt food and this is just to start with.

She doesn't become overwhelmed in the kitchen, which is my point that not every Autistic person becomes overwhelmed in the kitchen. I'm not saying you don't so please don't think that. Telling them you can't do something because of Autism isn't going to score you any points.

There are 9 other activities for daily living have you looked to see where you can score anymore points?

rosie118

poppy123456 said:

A letter from your GP telling them that Autism will have this or that affect on you will not help. PIP is not about a diagnosis, it's how those conditions affect you against the PIP descriptors.

A GP doesn't spend any time with you to know how you manage any of the activities. They will only know something if you tell them and this isn't evidence.

Autism is a spectrum and it affects people in very different ways. For example, my daughter has Autism (as well as other things) but for preparing a meal she does need assistance, without this it would be a complete disaster with burnt pans, uncooked and even burnt food and this is just to start with.

She doesn't become overwhelmed in the kitchen, which is my point that not every Autistic person becomes overwhelmed in the kitchen. I'm not saying you don't so please don't think that. Telling them you can't do something because of Autism isn't going to score you any points.

There are 9 other activities for daily living have you looked to see where you can score anymore points?

Yes I agree, that is exactly what I told the woman. I said GP letters saying 'Rosie can't do this because x y and z doesn't help with PIP'. But she spoke to me like I was stupid. Saying of course it does, that's what you need to get. 
And of course completely appreciate every autistic person is different. But what more evidence can I give than being very specific in examples that have happened? 
It's frustrating when I know I can't do something and I know the fair outcome is that I am awarded points for it, but she isn't willing to accept it. 
I have been given 4 points for engaging with people, prior to the MR. Communication she says is nothing to do with autism and zero points there. 
Medication/therapy one she said isn't relevant to tablets and counselling, only to dialysis etc. 

Honestly think she was just making stuff up as she went, now looking back. 
In the moment she was so sure and she kept saying 'it has to be lawful' and just kinda scared me to be honest into being scared to saying I can't do anything. 

poppy123456

If you need prompting to take your medication then this is 1 point. To score more points here then the therapy needs to take place in your own home and must be prescribed or recommended by a registered doctor, nurse, pharmacist or health professional regulated by the Health Professions Council;

Without any of which their health is likely to deteriorate.

May i ask if you scored any points at all for preparing food?

My daughter has never score points for communication but i have always disagreed with that but there's never been any reason to because she's always had Enhanced for both parts.

rosie118

poppy123456 said:

If you need prompting to take your medication then this is 1 point. To score more points here then the therapy needs to take place in your own home and must be prescribed or recommended by a registered doctor, nurse, pharmacist or health professional regulated by the Health Professions Council;

Without any of which their health is likely to deteriorate.

May i ask if you scored any points at all for preparing food?

My daughter has never score points for communication but i have always disagreed with that but there's never been any reason to because she's always had Enhanced for both parts.

I have alarms set on my phone for throughout the day (I take it three times a day). 

I didn't score any points for preparing food in the original decision, just the four for engaging. I don't have the MR decision to know yet if she's given me any points for food. 

I also explained in the MR letter that I can't leave the house alone but she didn't ask me anything further about that so I'm assuming they have left it at the 'Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant.' 
Which is frustrating because I literally can't leave the house alone. There's no subjectivity or debate around that. I tried to walk around the block alone for 'walk for autism' and had to phone my brother in a panic to get home. But not sure whether to fight that at tribunal or not. Not sure why MR woman didn't ask me about that part. 

poppy123456

So you have an award currently of Standard mobility and scored points in 1E. A claimant who satisfies 1E cannot also satisfy 1F. If they cannot undertake a single journey on the majority of days due to overwhelming psychological distress, then 1E will be the applicable descriptor, even if there are occasions when they could follow a familiar route, if accompanied.

Can you go out with another person the majority of the time?