Issues with PIP decision (mental health)

66Mustang · October 2019

Sorry that this is a rather rambling, long message but I wanted to get everything down. I don’t really have a specific question but I feel I may have been treated unfairly and am looking to see what people think, as well as for any general advice.

I have just had a decision for my PIP. Previously, I was on the enhanced daily living component and the standard mobility component. This has just been cut to the standard daily living component (8 points) and nil mobility (0 points!).

I suffer from a few diagnosed conditions: autism, OCD, anxiety, obsessional thoughts and depression.

For daily living, I agree with some of what they decided. However looking at their report I scored 0 for some things even though I feel I meet the descriptors for scoring points. I intend to challenge this.

However, scoring zero for mobility is what most surprised me - last time I scored 10 (I believe this should have been 12 but it was at the time when you couldn’t score 12 for a mental condition - this has changed now) and my condition hasn’t gotten any better since then. My situation is that I cannot go out of the house to make any journey (familiar or unfamiliar) unaccompanied - without my parents, I am housebound. Furthermore, I absolutely cannot use any public transport under any circumstances. All of this was explicitly stated both on my claim form and at my interview.

In spite of this, the decision letter states “I decided you can plan and follow the route of a journey unaided.” This is categorically untrue, and made me think they may have mixed my forms up with someone else’s!

The other issue I have is with the wording in their report. I initially asked for a home visit but was declined as they demanded more evidence from a doctor that I needed one, but I could not get a doctor’s appointment in time. So, I spent several weeks psyching myself up for the interview and managed to attend it, having been taken there and accompanied the whole time by a parent. It took huge effort to attend while retaining my dignity and composure - I was incredibly anxious throughout the entire interview. However, in the report it was stated, “you were not observed to be anxious, agitated or tense” and “there is no evidence of overwhelming psychological distress”. I was upset by the assessor’s view which, seemingly, was that I did not appear distressed, so I wasn’t distressed. The view that physical appearance has this much bearing in relation to a mental disorder seems discriminatory towards someone with a hidden disability. Effectively they are saying, “you didn’t look unwell” which I find very unfair, and sounds like something that someone would say in the 1970s, not 2019.

Just wondering what you think? Am I right to ask for a mandatory reconsideration or do you think I am being unreasonable?

Thanks.

thespiceman · October 2019

Hello @66Mustang Thank you for sharing.. Sorry to hear what you have ben through.

I would always appeal any decision. Have a look at our website.

For advice and guidance.

I would also advise. Have you considered getting any support for your mental health issues.?

Often by accessing support can be beneficial to your wellbeing. Can help with anything like this your benefit situation and offer assistance. Be in attendance any interviews and assessments.

Get floating support or an out reach worker.

Might not be in all areas .

I used this one.

https://www.richmondfellowship.org.uk.

Hope that gives you some reassurance. Please get in touch if we can help with anything.

Some one will know.

Please take care.

@thespiceman

Chloe_Scope · October 2019

Hi @66Mustang, lovely to hear from you. I am sorry to hear about how the assessment went, it doesn't appear like everything was taken into consideration and I can completely see why this would be annoying.

I would consider appealing the decision. Here is some information about the appeal process. The letter should not outline the mistakes in the report. It should have 2-3 real life examples of how you meet the criteria and you have a month from the decision to submit this.

Also, you may find it helpful to access some local advice.

If there is anything else we can do then please do let us know.

Moz · October 2019

So it's clear that lots of people, with lots of different issues have had the wrong decision and then money reduced or stopped altogether. This is well known amongst all law firms charities and citizens advice, who deal with these cases and subsequent problems it causes. People have been in real need for help, advice and legal advice. Not long ago the issue came up on the Victoria Derbyshire programme on the BBC. People had wrote in and said they believed that these decisions were Deliberately made and asked for help on how to record it as evidence, the BBC show claimed that all you can do is bye a two-way tape recorder, the same as the police have and then record it, as its usual done in a private building. Whilst this Is the truth, it's NOT the whole truth. The law on this clearly states, if you believe that there is anti social or criminal activity happening, then by law your allowed to video record covertly and that evidence is allowed to be used in any case against them. This CRUCIAL information was kept from the public, which as you know is vulnerable people. What they do at that assessment is wrong, and we All know it. This is one of the ways they have gotten away with it. We'll know you know the law on this, video record them when your there secretly, and I advise everyone to do this as its your right. It cannot be allowed to continue. It makes me mad. My obsession is law politics and rights and this stuff they do drives me MAD! Well enough is enough. So here I am and there you go, I really hope it helps.

66Mustang · October 2019

Thanks very much for all of the replies.

I currently am getting support for my issues from a clinic, they are really good but sadly cannot help with benefits. I am fortunate enough to have very good support from family.

About the letter - that makes sense. I had written a letter but it does highlight the mistakes in the assessment so maybe needs editing. I haven’t sent it yet.

Here is a paragraph example from the letter:

“You said I can prepare a simple meal with prompting. This is only true some of the time and it has not been acknowledged that I have to wear plastic gloves and/or repeatedly wash my hands whilst doing so. Also, the majority of the time, which I understand is what the decision is based on, someone else has to prepare my meals for me.”

I have written a paragraph like this for each of the categories that I disagree with.

Is this OK or does it need some work? Also, should I post up the whole letter so you can have a look at it or is this not allowed/not a good idea?

Many thanks again!

cristobal · October 2019

@66Mustang - can I advise that you have another look at your letter, if it's not too late?

'Preparing food' is, according to the DWP guidelines,

'the ability to prepare and cook a simple meal for one from fresh ingredients. It assesses ability to open packaging, peel and chop, serve food on to a plate and use a microwave oven or cooker hob to cook or heat food. Serving food means transferring food to a plate or bowl, it does not include presentation.

Carrying items around the kitchen or carrying food to where it will be eaten is not included ...'

Washing hands, wearing gloves etc doesn't seem to be covered by this so I'd be inclined to leave this out.

Why does someone have to prepare your meals? Why is it that you can cook some of the time but not others? Similarly with prompting - why sometimes and not others.

Can you use a microwave?

Give examples..

Good luck with the MR

66Mustang · October 2019

Not too late - haven’t sent it off yet going to really work on it before I send it. Thanks very much for the tips, I really appreciate the help.

cristobal · October 2019

@66mustang - do this for each of the descriptors. They're on line but I'm never able to post a link - search DWP + PIP + Assessment + guidelines and you'll find them..

I found it best to read through so I had a good idea what was involved, and then make a draft of what I was going to say using a page for each one.

Be honest - don't try to 'shoehorn' your condition where it doesn't fit.

Do a little bit at a time.

Also be aware that you have to be able to do tasks 'reliably' - i.e. safely, timely, to a good standard - there's a definition of this on line as well..

66Mustang · October 2019

Is this any better?

“You said I can prepare a simple meal with prompting. This is only true some of the time. The majority of the time someone else has to prepare my meals for me. This is because my OCD becomes so overwhelming that I am unable to touch any of the objects related to preparing food such as utensils, packaging, or buttons on the cooker/microwave as I feel that these items are contaminated. There are times when, if prompted, I will feel able to prepare very simple food such as toast but I still find this very difficult and will often give up half way through the process. Also, I can only use sharp knives when in the presence of someone else due to my obsessional thoughts causing fears that I am going to harm myself.”

Thanks very much for the assistance!

cristobal · October 2019

@66mustang - sounds better to me.

Just wondering if you might be better avoiding phrases like 'this is only true some of the time', and 'there are times when...' and being a bit more specific. How often can you cook? Once a week? Five times a week? Once a month?

I don't really know anything about your condition, sorry, but bear in mind that if you get 2pts for needing assistance with preparing food you'll need to get points in other areas to get PIP - need 8 points total.

66Mustang · October 2019

Thanks for the tip. Yes I have written a similar paragraph for each of the sub categories (toilet needs, managing medication etc.) that I disagree with, that was just one of them. I will get on and fix the rest of them now!

Thank you.

66Mustang · October 2019

I have just gone through the letter and edited it, taking into account your advice.

Is it OK to post up the whole letter so people can examine it and maybe give me some constructive criticism, or is this not a good idea?

Thanks!

cristobal · October 2019

@66mustang - I really don't know, sorry..I know that you can't post personal stuff ..I imagine if you're not allowed to do it someone will delete it!

OverlyAnxious · October 2019

66Mustang said:

I was upset by the assessor’s view which, seemingly, was that I did not appear distressed, so I wasn’t distressed. The view that physical appearance has this much bearing in relation to a mental disorder seems discriminatory towards someone with a hidden disability. Effectively they are saying, “you didn’t look unwell” which I find very unfair, and sounds like something that someone would say in the 1970s, not 2019.

I completely agree with this. I had a similar experience which is very frustrating as the fact the assessor thought I looked ok has been used against me in both the original assessment and the mandatory reconsideration so far. I've spent a good 15+ years keeping it hidden and working on the outward façade so other people didn't see my 'weaknesses' (OCD, agoraphobia, social anxiety etc) so I would hope I don't 'look' unwell to a random assessor despite struggling hard with many things everyday. It's a bit ironic there's so many mental health 'awareness' campaigns going around currently while PIP are still using 50 year old perceptions on MH issues.

Where I would slightly disagree with you is on the following journeys part...to receive the full amount of points for that you have to experience overwhelming psychological distress from any journey - I would suggest that isn't the case for yourself if you were able to maintain some composure at the assessment, though I do believe you should've been awarded something there as you need accompaniment to complete the journey. I accept the fact I won't receive anything for that myself as I can and do complete journeys with severe anxiety, but not overwhelming psychological distress.

I also have food prep issues due to OCD (contam & injury fears). Wearing gloves and handwashing isn't relevant for PIP. Though you can use that as part of the 'timely fashion' descriptor if your handwashing rituals cause you to take twice as long to prepare a meal as a fully able person. Problems with food prep due to mental health issues is definitely a grey area and not at all clear cut from all the research I've done. I have decided to appeal to tribunal mainly for food prep and mixing with people as I have nothing to lose (except what's left of my mental wellbeing lol!). I didn't score any points at all...the difference with yours is that if you do take it to MR or tribunal, you could also end up losing the points you currently have. So you need to work out whether it's worth the risk of losing standard daily living or not.

66Mustang · October 2019

Thanks for the posts.

OverlyAnxious, just a question on the mobility - I found these descriptors:

a. Can plan and follow the route of a journey unaided. 0 points

b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points

c. Cannot plan the route of a journey. 8 points

d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points

e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points

f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points

My situation is that I cannot follow any journey (familiar or unfamiliar) without another person. In fact I cannot leave the house unaccompanied. I’m happy to be told otherwise, but to me it seems I would satisfy the conditions for “f” (12 points)?

chiarieds · October 2019

Hi @66Mustang - I 'think' you scored 10 points for the above previously (probably a home assessment), i.e. either the d) or e) descriptor. If it was due to e) you cannot undertake any journey, then descriptor f) wouldn't apply.....as you never go out.

Currently (altho' you wanted a home assessment), the fact that you did get to the assessment centre (as has been commented on above), means it would be difficult to get points for descriptor e). Possibly worth keeping in mind as to which descriptor you now think best describes you, giving examples, if applicable, to the difficulties you faced when last attempted.

If you have any further medical evidence (relevant to the time of your assessment), that you haven't already sent in, then send this in with your letter. Remember to put your NI number at the top of everything.

66Mustang · October 2019

Hi chiarieds, many thanks for the response. Last time I did indeed meet descriptor “e”. It was during the controversial ruling that you couldn’t meet descriptor “d” or “f” for a mental health condition. I’m hoping that the fact this has been overturned now means I can meet descriptor “d” if not “f” as I cannot go out without another person.

Edit: thanks for the tip. I am seeing my GP in a few days so maybe they will be able to write me a supporting letter.

66Mustang · October 2019

A little more info: I do go out almost every day but always need one of my parents to accompany me. They have to plan the journey, engage with anyone who we meet, and just be with me for psychological support. I wouldn’t be able to cope on my own.

I don’t however need an assistance dog or orientation aid, just another person.

poppy123456 · October 2019

It will depend on the reasons why you need someone with you when you out. Is it because of overwhelming psychological distress or because of something else?

Posting your MR letter here isn’t going to help because no one knows exactly how your conditions affect you. The only person who knows that is yourself.

OverlyAnxious · October 2019

66Mustang said:

Thanks for the posts.

OverlyAnxious, just a question on the mobility - I found these descriptors:

a. Can plan and follow the route of a journey unaided. 0 points
b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points
c. Cannot plan the route of a journey. 8 points
d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points
e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points
f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points

My situation is that I cannot follow any journey (familiar or unfamiliar) without another person. In fact I cannot leave the house unaccompanied. I’m happy to be told otherwise, but to me it seems I would satisfy the conditions for “f” (12 points)?

Yep, sorry, somehow I got e & f switched in mind since last checking that descriptor.

That doesn't make any sense at all...how can you score more points for going out accompanied, than never being able to go out at all!?

The fact you attended the assessment almost certainly stops you fitting e this time, but would allow you f in the bizarre way they've written those!

66Mustang · October 2019

Thanks for the posts.

poppy123456 - they have to plan the journey, talk to any people en route who I may need to talk to, and be there for support. I can’t really explain this last point but I just wouldn’t be able to cope if I was on my own. When out and about I basically follow whichever parent is taking me. Maybe my doctor will be able to help me word this better.

The reason I wanted to post my letter up was so someone could tell me if it is written in the correct way or not and give me some hints. I already got some helpful advice just from posting up a paragraph from the letter. I’m fine with not posting it though.

OverlyAnxious - I agree, it is very bizarre you can score more points for going out accompanied, than not going out at all! The only reason I could think of was that PIP is based on how much help you need, and someone who is able to go out with support obviously needs some help whereas someone who is unable to go out at all won’t be getting that help.

One thing. The report states that they consider my needs based on the majority of days. The thing is my being able to attend this appointment was an absolute one off - not the norm - it took me weeks to get ready to be able to go and I certainly wouldn’t be able to do so on the majority of days. I don’t know how they could say I could do it the majority of days! Not doubting you as I am sure you are right, just seems a bit unfair on their part.

Thanks again!

OverlyAnxious · October 2019

66Mustang said:

OverlyAnxious - I agree, it is very bizarre you can score more points for going out accompanied, than not going out at all! The only reason I could think of was that PIP is based on how much help you need, and someone who is able to go out with support obviously needs some help whereas someone who is unable to go out at all won’t be getting that help.

One thing. The report states that they consider my needs based on the majority of days. The thing is my being able to attend this appointment was an absolute one off - not the norm - it took me weeks to get ready to be able to go and I certainly wouldn’t be able to do so on the majority of days. I don’t know how they could say I could do it the majority of days! Not doubting you as I am sure you are right, just seems a bit unfair on their part.

Thanks again!

Yeah, that's a fair point, and I wondered that too after posting...but saying that, someone that can't go out would still need the help by having someone do their shopping and collect prescriptions etc. Although I accept that then isn't 'mobility'...but it also isn't specifically covered by any of the daily living descriptors either. There must be lots of people with major issues that slip through the gaps in the descriptors.

I completely agree you should've received something for the journey planning from what you've said so far, just not 'e' as it states cannot undertake any journey. So that specific descriptor would be above the 'majority of days' part due to it's wording I think. That is just my opinion/perception of the descriptor though. I can only assume maybe your wording or the assessors understanding was off on the day.

It was also a complete one-off for me to visit the assessment centre and caused me a lot of problems both before and after. But in my case it doesn't help to have another person there (in fact it makes it worse!) so I have to try and get through everything on my own. I can't use public transport at all and usually fail anything other than a local grocery shop or river walk out of peak times, but that doesn't fit any of the descriptors because I can drive and do go out alone.

66Mustang · October 2019

Very true about people slipping through the net. The descriptors seem to be aimed at very specific things and if you have a problem that is equally as bad but not what is described you don’t score any points.

For example (sorry for being graphic) I need someone to clean the toilet thoroughly before I am able to use it. I often urinate in plastic bottles, or in the sink that was installed in my bedroom to assist with my OCD, if there is no one available to clean the bathroom or if I just feel so overwhelmed by OCD that I can’t use the bathroom. However this obviously isn’t listed in the descriptors(!) so I scored no points. I guess the closest thing I could argue for that is that I possibly could say I need prompting to use the toilet (someone tells me to use it instead of unhygienic practices).

Chloe_Scope · October 2019

Hi @66Mustang, I am glad other members have been able to support you with this.

If you are following the descriptors and other advice then this will show a strong MR letter. Here is some more information that may help: https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/appeals/mandatory-reconsideration/

66Mustang · October 2019

Thank you for the post, Chloe.

Since I last posted on this thread I have seen my GP who knows my situation well. He said it sounds like I shouldn’t have been downgraded and should still be on enhanced care and at least some mobility. He has kindly offered to write a letter to accompany my own MR letter. Although I understand the chance of having the decision changed via MR is only 18%, I am remaining optimistic that this should be seen as strong evidence to support my claim.

Thanks again.

chiarieds · October 2019

Hi again @66Mustang I'm delighted that you've got a great GP as do I. Mine also knows me well. I do hope his supportive letter helps your claim.

I also went through an MR & got awarded what I felt was correct & hoped for. Well someone's got to be in that 18% !! I hope you become another happy & positive statistic.

66Mustang · October 2019

Thanks very much, chiareids

OverlyAnxious · October 2019

66Mustang said:

Thank you for the post, Chloe.

Since I last posted on this thread I have seen my GP who knows my situation well. He said it sounds like I shouldn’t have been downgraded and should still be on enhanced care and at least some mobility. He has kindly offered to write a letter to accompany my own MR letter. Although I understand the chance of having the decision changed via MR is only 18%, I am remaining optimistic that this should be seen as strong evidence to support my claim.

Thanks again.

Did you have any evidence to send for the first part? If not, you could also use a letter from your parents to help with evidence as it sounds like they know your daily struggles well.

66Mustang · October 2019

I did send in letters first off but only ones from a specialist clinic, which is dealing with just a couple of my issues, so they were only really able to explain how those issues affect my daily life - the GP is able to be more general and explain everything so hopefully this additional evidence will help.

A letter from my parents is a good idea, I hadn’t thought of that at all. Just one question though: I live with my parents - would there be any conflict of interest if I got them to write a letter, as they are obviously going to be on my “side”?

Thanks

poppy123456 · October 2019

A letter from your GP isn't the best evidence to send because they usually only know the basics, they very rarely know exactly how your conditions affect you against the PIP descriptors.

A letter from your parents could be useful for the Tribunal and there's certainly no harm in sending this.

66Mustang · October 2019

Thanks for the post, poppy. I will ask my parents if they will write a letter.

66Mustang · October 2019

I’ve just read the letter from my GP. I am fortunate in that I have a GP who knows me very well and the letter is strongly supportive. He has written very relevant information about how I need assistance with both daily living and when leaving the house. He also stated that he fully supports my own MR letter.

Is it harmful to send a GP letter or is it OK to go ahead and include this with my own letter and my parents’ letter?

Many thanks.

chiarieds · October 2019

I'm sure that Poppy will know that a GP's letter isn't usually the best evidence, but from what you write about your GP & his letter, I would say that in your case (as in mine), it may prove to be very helpful; certainly will do no harm. I would therefore include it with your parents & your own letters.

66Mustang · October 2019

Thanks very much, chiarieds. I will send them all off ASAP!

OverlyAnxious · October 2019

Yep, I'd echo the above, sometimes a GP letter isn't helpful for PIP but it sounds like yours is, so I'd definitely send that along with a letter from your parents.

Chloe_Scope · October 2019

Hi @66Mustang, it sounds all very comprehensive to me! A GP letter is seen as poor evidence because a GP rarely knows their patients in that much detail. However, there is nothing wrong with sending a letter from you GP which does in fact highlight how you are affected on a daily basis.

66Mustang · October 2019

Thanks everyone. It sounds like I am fortunate with my GP - I have actually found him more helpful than specialists on several occasions!

66Mustang · October 2019

I am sort of having second thoughts about asking for a MR. I only scored 8 points for daily living so they would only need to cut this by 1 more point and I would lose all of my benefit, plus the person who cares for me would lose their carer’s allowance.

However I really feel I should have gotten more than what I was awarded.

Is it very common for them to deduct points at the MR stage?

poppy123456 · October 2019

Most MR decisions remain the same but it has been known for people to be awarded more points and lose points after the MR decision. It's impossible to give you any advice on whether there's any risk to your current award, for this you'll need to get some face to face advice.

herroabii · October 2019

Sorry just to point out a few mistakes on the mobility
To score 10 points - cannot undertake any journey
To score 12 points - cannot undertake any journey Alone

herroabii · October 2019

Also, my MR a few years ago went from 0 to enhanced rate, so it can happen.☺️
And sorry seen someone point out what I just posted, it recently changed when they couldn't say " for any reason other than " whatever it used to say.

66Mustang · October 2019

Thanks for the posts. I think I will go ahead with it.

thespiceman · October 2019

Hello @66Mustang Please if I can suggest contact the link I provided for you regarding mental health.

https://www.richmondfellowship.org.uk.

They will first help you with any benefit issues. Even put a report in with the Form or even attend with your assessment.

I apologise if they are not in your area.

You could contact MIND or any other mental health charity.

https://www.mind.org.uk.

Often worth consider speaking to a mental health charity does help with looking at everything. Including your well being and health plus lots of other things.

I had a situation reassessed constantly every 18 months to two years. Every time either fit to work, sign on the around again another assessment. Not fit to work over a long period.

They intervened the charity I used as it was not helping me mentally. Sent a letter in. Not saying this is not going to happen to you but thanks to them and using a lot of what I learnt.

A reason I put on the forum a lots of knowledge on mental health.

Please may I add always appeal any decision I know been a lot of negativity around assessments and tribunals.

We unfortunately as a community do not hear many of the positive stories we need to. They are out there and I wish you the best on a positive outcome.

To give you reassurance and confidence it is important that you get any support and advice, guidance with any benefit problems.

I do not have floating support now and have used CAB a lot . Have been great to use.

Please if I can help with any thing. Please ask always supportive.

Please take care.

@thespiceman

66Mustang · October 2019

Thank you very much for the post thespiceman.

Sadly it looks like the Richmond Fellowship only have an employment service in my area but I am hoping to get into employment in the future so I will bear them in mind when I am ready to do this.

I have used MIND in the past and found them quite helpful. It is good to know they can help with benefits. I haven’t used the CAB before.

I understand what you say about the positive / negative balance on the forum. It happens on car forums too where you mostly only hear from people with problems as people who have a working car have no reason to post! I will certainly post back if I get a good result, though!

thespiceman · October 2019

Hello @66Mustang Thank you for reply. I was not sure if they operated in your area Richmond Fellowship.

Sorry if that is the case although you mentioned an employment service that is good to know.

I know since I left the for mentioned charity lots of the branches have been closed.

I am aware that MIND might be useful then.

I just one of the community champions who has care and concern for any one going through the assessment system.

Given I have been there myself and probably still will be until end of time.

I hope you can find some support and do know can be beneficial to you if you find some one to help you.

Regarding benefits . Can be complex and confusing.

Wish you well and hope please ask if we can advise, wanting to know anything.

Be supportive any time get in touch. Your not alone.

Please take care.

@thespiceman

66Mustang · October 2019

Many thanks, I really appreciate your help.

Chloe_Scope · October 2019

No problem at all @66Mustang, we're always happy to help.

66Mustang · October 2019

Letters and evidence sent off. Now all I can do is wait

I am liking this forum. How long has it been going? I applied for PIP 3 years ago and didn’t come across it when I was researching back then.

Chloe_Scope · October 2019

That's good @66Mustang! Fingers crossed for you! The forum has been running for a few years, but has recently started to grow a lot more.

Issues with PIP decision (mental health)

Replies