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PIP MR Refused (OCD/Food Prep)

OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
edited October 2019 in PIP, DLA and AA
Evening all,

You may remember my previous thread on PIP...thought it best to start a new one so people aren't wading through all the old replies before finding today's update lol, link below if you missed it before.

https://community.scope.org.uk/discussion/61145/pip-refused-unusual-circumstances#latest

PIP MR decision arrived today.  I wasn't expecting it to change but still disappointed to find that it didn't.  :(

I tried to explain particularly about the food prep and OCD in detail but only got one sentence back mentioning food prep...just says that I use the oven every day...which is true, but no mention of prep or fresh ingredients at all.

I know everyone's different but I want to know if anyone else has been successful in getting any points for food prep purely due to OCD contamination fears at all?

I've been telling other people to continue to tribunal for the last few weeks but I'm honestly not sure there's any point me doing it if they're just going to say using the oven counts as food prep. :neutral:

Thanks
OverlyAnxious

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    With only an 18% chance of the decision changing at MR stage it's always a very high chance you need to take it to Tribunal.

    Preparing food .. using an oven is included in the descriptor. It's above being able to prepare and cook food at waist height. Whether or not you'll score any points here will totally depend on how your conditions affect you.

    What other activities do you think you should have scored points in and why? You really can't compare yourself to anyone else because we are all different.


    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • April2018momApril2018mom Posts: 2,869 Member
    Hello @OverlyAnxious. You need to go to tribunal as not many people manage to have their decision changed at a mandatory reconsideration. Have a look at the PIP descriptors.
    Read each one carefully and see where you can pick up more points. Avoid comparing yourself to anyone else. Give reasons why as well. How do your impairments affect you? What do you find hard to do? 
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    edited September 2019
    Thanks both, we have been through all that in the original thread though.  Although I have problems/difficulties with a few of the tasks, I don't fit into any categories properly.

    With regards to food prep, I know of a few people in exactly the same position with contamination OCD - in simple terms, we can use an oven, but only for pre-prepared meals in certain types of packaging, which doesn't seem to fit into any of the descriptors.  We cannot prepare a meal from fresh ingredients at all but not because of any physical disability, it's purely mental.  Ironically I also can't use a microwave because of the fear of food not being cooked through compared to an oven, despite that being a higher points score.  And I can't have physical help with food prep as I can't cope with the contamination of having another person in the flat, let alone touching food!

    I've also just remembered I now potentially have another piece of evidence but not sure if it'll be any good or not.  It is mostly wrong as is everything I get from the health system! :D  But basically it's from the hospital dietics department, it mentions my very low BMI & poor nutrition and suggests a prescription for a high calorie 'build-up' type drink.  I'd have to try and get to the GP to get the prescription though and that's not possible currently, I'm unlikely to be able to drink it either if it's got a milkshake consistency...but again, the dietician didn't understand me, just as the GP's don't, or the psychologists, or the CBT therapists...and definitely not the PIP assessors! :#  

    The main reason for applying to PIP was to get the one bedroom rate of housing benefit instead of the shared rate (male, under 35).  Is there any other way to do this without getting PIP and SDP first?  The ONLY reason I live alone in a self contained flat is due to my illnesses but that doesn't seem to be taken into account by housing benefit or ESA, and I know discretionary housing payment is only for short term so I can't do that either.  If I could at least get most of the rent paid, I would be able to get by on the ESA without the extra from PIP.  Currently most of my ESA has to go on rent and due to yearly rent increases I'm now paying more from the ESA than the housing benefit with no way out and knowing the rent will likely continue to go up each year. :(  
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I remember parts of the thread, which i think was mostly about preparing food. In my opinion, it's not about then not understanding a condition, it's about the claimant explaining what they can and can't do and why they can't do that activity regularly and reliably.

    It's difficult to advise without knowing exactly how your conditions affect you.

    As advised, using an oven isn't included in the descriptor, it's waist height only.

    The question about the 1 bedroom rate. I'm afraid while you're under 35 then a PIP daily living award is your only option.

    Whilst a DHP is only temporary, you can actually re-apply once that time ends. However, they could advise that you find somewhere cheaper. They could also ask if you could afford that rent when you first moved in, which is what happened to me some years ago when i applied for a DHP. Thankfully, i could afford the rent when i first moved in so i was awarded the DHP for a short time. My advice is to try this because if you don't try you'll never know. Even if you previously had one in the past, it's still worth applying again.

    Whether you appeal the decision on the PIP is your choice but as you don't have an award in place then you have nothing to lose, except of course all the stress it causes. Tribunals are often more understanding the DWP/assessors.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    Thanks Poppy.

    Yeah I agree, I'm not blaming them for the lack of understanding, clearly other people get positive results from the NHS & DWP, it's my explanations that are the problem.  

    I haven't been able to adequately explain it to any relatives either though, even after they started accepting it slightly.  It's so frustrating when I do try to explain something, and they reply with 'oh right, so it's like....' and I just think, no, it's not like that at all, how on earth did you get that from what I said!? :D  But I can't think of a better way to explain it so just agree in the end...

    With regards to the DHP, I didn't realise you could re-apply, I've never had one so far.  I have been searching for a cheaper place but there simply aren't any that are self contained and close to amenities to meet my current needs.  When I moved here, it was the cheapest place that fitted the bill, it's a small suburban studio flat, not a 6 bed waterfront penthouse!  :p  I put down 6 months rent as a deposit from inheritance that I had just received.  I was desperate to get out as I'd reached the point where I was no longer able to cope living with people at all and either had to move out or top myself...  I don't know how the council would view that, seeing as I couldn't 'afford' the rent on income, only because of the inheritance.  I was so sure I'd be able to either work just enough to support myself, or top myself, within that 6 months.  Sadly neither happened which is why I'm now stuck in this position lol.  It was at that point where I had to apply for ESA which was a massive hassle and then HB & CTR as well.  I just don't know why HB doesn't take medical conditions into account with regards to LHA.  I can't be the only one in this situation.

    I would put up with the stress of attempting tribunal if I thought there was some chance of a positive result but I just don't see it now.  I guess that's what I'm asking in this thread really but I know no-one can say for sure.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Only you can decide whether to appeal the decision, if you do then you have 1 month from the date of the MR decision to request it. You're right, no one here can tell you for sure whether you'll be successful at Tribunal and the waiting lists are huge so relying on a PIP award for extra housing benefit isn't really the way forward for you. If you were successful you have the added wait for the backdated money and for any potential award to be put into place. All this can tell well in excess of 1 year.

    As for the DHP then i'd advise you to apply because if you don't apply you'll never receive it. The worst that could happen is you're refused. I would advise you to get some help with the form because they aren't the easiest forms to fill in.

    HB rules for under 35 have always been the same. Disabilities are taken into account but you need to be claiming certain disability benefits for them to apply.


    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @OverlyAnxious, I'm sorry to hear this. I know it's not good news to hear, even if you had expected it. If you need any help with the tribunal then please do let us know. 
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  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    With regards to adding extra evidence for the tribunal, does that have to be sent separately after the application or have I read that wrong?

    Also, would any evidence have to be from before the original assessment or is more recent stuff ok as well? I'm just thinking they could disregard later dated evidence as there's no proof that the condition was just as bad at the time of the assessment.

    Also, is it worth asking for any help from the local MP?  Or a letter from a relative that knows the restrictions, despite not really understanding the conditions?  Just trying to think of any more 'evidence' I could add really! :)
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Evidence can be sent at a later date, just concentrate on requesting the Tribunal for now.

    You can send new evidence to the Tribunal but it must be related to how your conditions were at the time the decision was made. Any worsening of condition won't be taken into consideration.

    Yes, you can ask someone that knows you well, this may help but giving real life examples of what happened the last time you attempted that activity for each descriptor that applies to you is the best advice.

    A local MP, in my opinion i'm really not sure what they could do at this point because they most likely don't know you or how your conditions affect you.


    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    How are you getting on with your appeal @OverlyAnxious?
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    Scope

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  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    How are you getting on with your appeal @OverlyAnxious?
    Not brilliantly so far...  I haven't started it yet! :D  

    I did try to start it online over the weekend but I just didn't really know what to write when I got to the main appeal section.

    I tried to visit a local disability advice centre yesterday to ask for their help with the wording.  But although I could get there, I couldn't even ring the intercom let alone get through the door, panic took over.  It's the 4th attempt I've made to go into the same centre as I can't use phones and they can't use email, and although they offer home visits I can't cope with that either due to the contamination OCD.  I could try again next week but in all honesty I don't see it happening and I should really try to get this appeal in asap.  The deadline for me to get it in is Oct 9th.

    I've also been focussing on trying to get some evidence to prove my problems but that hasn't been successful so far.  Nothing useful in my medical record (finally got that 10 weeks after asking lol).  My Mum said she'll write a letter but she doesn't know half of the problems, particularly with regards to food prep as that's all behind closed doors.  I did also write to the local MP as it turns out he's a mental health Doctor in his other job so might have some advice on other treatment even if he can't help with PIP.  Apart from those things, I can't really think of anything else I could get as evidence at the moment.  I have been told that evidence isn't an absolute necessity as long as I can word things well...but that's where I'm struggling currently!
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    That must be really difficult @OverlyAnxious. I know we struggled to find support for my partner when she was in a similar situation. She couldn't have people in the house, wasn't able to use the telephone and couldn't go out to see people.

    I think the most important thing is to get your appeal registered. It can take up to a year to get a tribunal date and you can supply additional information during that time. 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    Just a quick update, I have submitted the appeal now...  So just got to wait and see what happens next!

    I'm sort of hoping they'll look at it and decide to offer me standard living without the need to go through the hassle (and cost to them) of tribunal...but I don't think that's likely! :D
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Thank you for updating us @OverlyAnxious, I'll keep my fingers crossed for you!
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  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Really hope that's the case for you @OverlyAnxious. Best of luck and as Chloe said, keep us updated. 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    *UPDATE 15/10/19*

    It was brought to my attention on here yesterday that I should have received 2 emails after submitting the PIP tribunal appeal online...  I only received the first one though, and that was over 2 weeks ago (Oct 1st).  I didn't realise I was waiting for a second one until yesterday!  It does say on the 1st that I should receive a 2nd, so purely my fault for not reading properly.

    So has it not been accepted by courts? 

    I don't really know what I'm meant to do now?  I can't use phones and can't find an email contact for HMCTS either?

    Anyone else only received the first email and know what I should do now?  

    Also the deadline to get the appeal in has obviously passed now, so I'm worried it's too late to do anything now?
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    Typical, 2nd email arrived this morning lol!  (More than two weeks after the 1st though!)

    DWP now have a month to respond...
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @OverlyAnxious, I am glad the other email arrived eventually! Best of luck!
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  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger


    DWP now have a month to respond...
    Just so that you're aware... very often they don't always respond within this time, if this happens then the hearing will still continue as normal.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    *UPDATE 01/12/19*

    The online checker still says DWP haven't responded to HMCTS but I received the bundle in the post last week.  (6 days later than their estimate).  When the online system updates, will I get an estimated tribunal date?  Sure I've read that somewhere but might have just made it up lol!  I'm guessing it won't be before 2021 now though.

    Had a rough week last week and wasn't up to reading the bundle for a few days but have done so this morning.  Nothing particularly interesting tbh, they're still standing by their decision but haven't added anything new.  I don't think I can really add any more information myself than I did on the online appeal form.  

    I think the online system has changed recently as I was told to just use the online form to start the appeal, and then go through the bundle to pick out any errors and then send a statement including all of that...but I did that on the online appeal form using the info from the MR anyway, and there's nothing extra in the bundle that wasn't in the MR.

    Tbh I've lost all hope of getting any PIP award.  I don't even know what I could say to convince the tribunal about my issues and I know they don't really fit the PIP criteria.  My health is still deteriorating and after having a few more awful 'public' experiences recently I feel like I'm getting closer to being almost totally housebound by some point next year.  I know it always gets worse in winter but this one seems to be particularly bad so far.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited December 2019
    You all need to ring them for an estimated waiting time for your area. This will just be a guide so do be aware of that. Backlogs are huge for most areas but hopefully you won’t be waiting as long as 2021.

    Im sorry to hear that your condition has got worse. Please also remember that HMCTS will only be able to take into consideration wha you were like the date the decision was made.

    also to add, please don’t lose hope, they are a lot more understanding than DWP and the health assessment providers. If you’re planning on appearing in person then this will be your best chance of a decision in your favour.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    I can't use phones so it's not possible for me to ring them. :(   What has annoyed me a bit is that I initially sent them a letter asking for a paper claim form due to the phone issue and never got a response.  About 6 weeks later I forced myself to phone for the claim, made myself really ill doing it with long term effects and struggled to even get my NI number over to the call handler let alone anything else.  However they've included a copy of my original letter in the bundle.  So they had it but just ignored it!?  Seems fairly discriminatory to me...as they wouldn't expect people with physical conditions to climb stairs for an assessment...but there's no alternative to phones for those of us with mental conditions.

    My worsening conditions still aren't part of PIP, but at least they'll make the next ESA review easier I guess lol.

    I have said that I'll appear in person but I wouldn't have been able to do over the last week or so and now I doubt if it will be possible at all by the time I get the hearing.  
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    edited December 2019
    Hi @OverlyAnxious. Please don't lose hope. I know that's easier for me to say but I worry you're starting to believe you're not entitled which isn't going to make you the best advocate for your own appeal. 
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    Scope

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  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    edited December 2019
    I'm not entitled though...realistically I know I'm clutching at straws using their guidelines about 'fresh ingredients' to get any points for food prep, let alone the full 8 that I'd need...  It's not even law so just down to their discretion.  I can completely see it from their point of view, in that I am able to physically prep a 'meal' (albeit very basic) every day and use the oven safely.  I don't know what I could say to a tribunal to explain how difficult I find it and how restricted I am with what I can cook, but also have no choice to not do it.

    I'm aware of all the restrictions and limitations I have due to my conditions, and the ESA award is proof of that, but they just don't fit the PIP descriptors.  If only health conditions from ESA could be taken into account for Housing Benefit I wouldn't even be attempting PIP.  
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    I hope I'm not being too blunt here @OverlyAnxious, but I think you're overthinking things and then taking the questions and criteria too literally. Obviously, I don't know you personally, or how your condition affects you day-to-day aside from what you've told us, but from what you've described you meet the criteria.
    If you were able to get someone to get some face-to-face support they'd be able to help go through this with you.

    I think if you looked at the questions again and took the advice @mikehughescq regularly gives of adding the word 'reliably' to them, it'd paint a very different picture.
    Can you prepare a meal reliably (i.e to a reasonable standard, repeatedly or in a reasonable time)? From what you have said, the answer would be no.

    It sounds like you keep looking back at the questions and talking yourself out of them applying to you. For example when it asks about help from other people, I know your condition prevents you from accepting help or allowing others to help prepare your food, but that doesn't mean you don't need help. From the sounds of it, you do. 

    I'm fairly certain this isn't the only area you've sold yourself short on either. Can I ask, is it the only area you've focused your MR on?
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    Yeah, it is all I've really focussed on in the MR. 

    I can't score anything for the journey planning because I drive and go out alone.  Not far, not for long, and I've got no chance of using public transport, but none of that matters.

    I can't score anything for bathroom issues because although I spend most of my day in there I can wipe my own bum so again it doesn't matter.

    I'm underweight and probably malnourished but that doesn't matter because I can physically lift food to my face.

    I can't take any meds so obviously no points for that one.

    I don't take long enough on the shower to be awarded anything for washing.

    The only place I might score 2 points is mixing with people...but because I attend the assessments alone and will be at the tribunal alone I'm almost certain I won't score anything there.

    I was hoping to use the report from my recent  Wellbeing Assessment as extra proof but it seems I wasted my time there completely...I've just been had Ia letter confirming that I have too many problems for thier service and that I've got to do to another F2F at exactly the same place for this new service!?  Surely they could just hand the report over to the new one as it's even in the same building!  I've got very little chance of making the appt as it's the week before Xmas with lots of people and traffic, and I've been having major unpredictable IBS issues over the last couple of weeks...

    Sorry for the rant but I'm getting very fed up with both the benefits and the health stuff atm.  Really can't cope physically or mentally with the latest phase of IBS issues but there's nothing I can do except try and wait them out.  I'm even typing this from the loo, wonders of technology eh!
  • 66Mustang66Mustang Community Co-Production Group Posts: 4,687 Disability Gamechanger
    Sorry I can’t help with everything but just a couple of points I thought of.

    The criteria includes help you “need but don’t get”. If you are underweight or malnourished you could state you need prompting to eat and drink - you don’t actually have to receive this prompting, you would just have to benefit from some encouragement if it did exist.

    The same could apply for taking medication - is there medication that may help you that you cannot take? If your OCD prevents you from taking them maybe you would benefit from someone prompting you to take it?
  • mikehughescqmikehughescq Member Posts: 6,005 Disability Gamechanger
    Yeah, it is all I've really focussed on in the MR. 

    I can't score anything for the journey planning because I drive and go out alone.  Not far, not for long, and I've got no chance of using public transport, but none of that matters.

    I can't score anything for bathroom issues because although I spend most of my day in there I can wipe my own bum so again it doesn't matter.

    I'm underweight and probably malnourished but that doesn't matter because I can physically lift food to my face.

    I can't take any meds so obviously no points for that one.

    I don't take long enough on the shower to be awarded anything for washing.

    The only place I might score 2 points is mixing with people...but because I attend the assessments alone and will be at the tribunal alone I'm almost certain I won't score anything there.

    I was hoping to use the report from my recent  Wellbeing Assessment as extra proof but it seems I wasted my time there completely...I've just been had Ia letter confirming that I have too many problems for thier service and that I've got to do to another F2F at exactly the same place for this new service!?  Surely they could just hand the report over to the new one as it's even in the same building!  I've got very little chance of making the appt as it's the week before Xmas with lots of people and traffic, and I've been having major unpredictable IBS issues over the last couple of weeks...

    Sorry for the rant but I'm getting very fed up with both the benefits and the health stuff atm.  Really can't cope physically or mentally with the latest phase of IBS issues but there's nothing I can do except try and wait them out.  I'm even typing this from the loo, wonders of technology eh!
    You would clearly score a lot of points based on the above information. I would strongly recommend you get yourself representation as you’re in danger of talking yourself out of a clear entitlement. Lovely bit of supportive caselaw re: driving and PIP can be found at https://www.gov.uk/administrative-appeals-tribunal-decisions/sb-v-secretary-of-state-for-work-and-pensions-pip-2019-ukut-274-aac for example. It shows that your assertion/assumptions re: driving and public transport are wholly wrong and you absolutely would score points. 

    I could analyse your analysis point by point but the key point has already been made by @Adrian_Scope and that is that the test is not whether you can do something but whether you can do it reliably. They are very different things. 
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    Yeah, it is all I've really focussed on in the MR. 

    I can't score anything for the journey planning because I drive and go out alone.  Not far, not for long, and I've got no chance of using public transport, but none of that matters.

    I can't score anything for bathroom issues because although I spend most of my day in there I can wipe my own bum so again it doesn't matter.

    I'm underweight and probably malnourished but that doesn't matter because I can physically lift food to my face.

    I can't take any meds so obviously no points for that one.

    I don't take long enough on the shower to be awarded anything for washing.

    The only place I might score 2 points is mixing with people...but because I attend the assessments alone and will be at the tribunal alone I'm almost certain I won't score anything there.

    I was hoping to use the report from my recent  Wellbeing Assessment as extra proof but it seems I wasted my time there completely...I've just been had Ia letter confirming that I have too many problems for thier service and that I've got to do to another F2F at exactly the same place for this new service!?  Surely they could just hand the report over to the new one as it's even in the same building!  I've got very little chance of making the appt as it's the week before Xmas with lots of people and traffic, and I've been having major unpredictable IBS issues over the last couple of weeks...

    Sorry for the rant but I'm getting very fed up with both the benefits and the health stuff atm.  Really can't cope physically or mentally with the latest phase of IBS issues but there's nothing I can do except try and wait them out.  I'm even typing this from the loo, wonders of technology eh!
    You would clearly score a lot of points based on the above information. I would strongly recommend you get yourself representation as you’re in danger of talking yourself out of a clear entitlement. Lovely bit of supportive caselaw re: driving and PIP can be found at https://www.gov.uk/administrative-appeals-tribunal-decisions/sb-v-secretary-of-state-for-work-and-pensions-pip-2019-ukut-274-aac for example. It shows that your assertion/assumptions re: driving and public transport are wholly wrong and you absolutely would score points. 

    I could analyse your analysis point by point but the key point has already been made by @Adrian_Scope and that is that the test is not whether you can do something but whether you can do it reliably. They are very different things. 
    I have tried to get representation but the local disability advice service won't help because they didn't help with the original claim.  The reason they didn't help with the original claim is because I physically couldn't get into their building let alone stay there for 2 hours to fill in the form.  I can't use phones and they wouldn't use email so I had to do it all myself in the end.  I hadn't found Scope at the time and didn't know about the descriptors, just tried to answer the questions as they were written.   If I had understood the descriptors I'd have realised I didn't fit them. 

    Sorry if I'm being dense but I can do these things reliably and don't understand where I should score points for any of the above?

    Every day I make dinner at exactly the same time using the oven.  I'm very limited in what I can make or eat (hence lacking vitamins etc) and often feel so nauseous from the anxiety of doing it and frequent IBS attacks around dinner time that I can't eat much but essentially I'll cook oven chips/potato waffles every day at 6pm.  Then open a packet of cooked ham or similar to have with it.  I don't need any prompting to do it because I have to stick to a rigid routine.  I wouldn't be able to use fresh ingredients, raw meat, raw veg, fresh fruit etc...but I can reliably prepare 'a meal' every day.

    Same with planning and following a journey.  Although I experience huge amounts of anxiety from doing it, I can do it reliably and safely and without overwhelming psychological distress.  I can't travel further than about 30 mins away, I can only use my feet or my car (can't even take lifts from relatives), I can only stay out for about an hour at a time on a good day, I have to stick to certain times (between rush hour and lunch in the morning, or between lunch and kids leaving school in the afternoon) and I can't commit to an arrival time as it depends entirely on how bad the IBS and anxiety are.  But I can do it alone, without causing danger to myself or anyone else so don't see how I'd score any points for mobility.  I don't have any physical conditions so would need to score 8 points for planning and following a journey to get any mobility award which is why I gave up on that in the MR.  The assessor wrote quite a lot about 'going out' on the report before going on to recommend 0 points which seemed like a huge waste of both our time!

    Although @66Mustang suggested prompting to take meds, this wouldn't work unless the assistant is going to force feed me with them against my will!  It is the OCD/health anxiety that stops me being able to take any form of medication due to the risk of adverse effects, I have not taken even a headache pill since 2003 as this is such a severe phobia for me.  I should of course be drugged up with anxiety meds, IBS meds, reflux meds, etc if the Doctors had their way!  The lack of meds has been used against me in the assessment and the MR.

    With regards to toilet needs, I have to visit the loo around 7 or 8 times a day for BM's, and probably spend around 3-4 hours a day sat on the loo on average.  But I generally get to the toilet on time so don't need any aids to avoid accidents (it does happen occasionally when I can't get home in time but not often).  So although I really struggle to cope mentally with that due to the OCD and health anxiety, it has no relevance for PIP at all.



  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    ilovecats said:
    @OverlyAnxious
    its rare but it happens.

    I personally have recommended points for a person with OCD with relation to cooking. They had a lot of evidence from psychiatrists and mental health occupational therapist who stated he was unable to perform the activity due to the way their OCD manifested (cannot close anything, turn anything off, shut lids, shut the fridge, turn off taps leading to quite bad ticking if they tried etc). It was quite specific to the person.

    They got 4 points for assistance.

    They had a lot of medication, specialist input with ongoing treatment and further therapy planned so this can be used as supporting evidence. 

    Should they not have had any of this evidence it would have be harder to support they needed assistance. 
    I don't have any evidence to support the OCD...  The only evidence I should have had was from the psych assessment 3 years ago but the assessor misunderstood me for most of it and even wrote that I didn't seem disordered...  Not sure if I misunderstood that but presumably it means I'm just a bit weird instead of actually having OCD!  The assessment was disregarded due to it's age anyway...

    I can't take medication, I have never had any specialist input and thanks to useless Wellbeing assessment 2 weeks ago I don't even have any planned treatment or a recent psych report to use!  

    So what are the chances now? :D


  • 66Mustang66Mustang Community Co-Production Group Posts: 4,687 Disability Gamechanger
    Although @66Mustang suggested prompting to take meds, this wouldn't work unless the assistant is going to force feed me with them against my will!  It is the OCD/health anxiety that stops me being able to take any form of medication due to the risk of adverse effects, I have not taken even a headache pill since 2003 as this is such a severe phobia for me.  I should of course be drugged up with anxiety meds, IBS meds, reflux meds, etc if the Doctors had their way!  The lack of meds has been used against me in the assessment and the MR.

    I understand where you are coming from but it sounds like prompting would actually help you, even if you don’t want any (which by its very nature you probably don’t, you just want to be left alone). I have been there myself.

    As for being forced I actually used the phrase “robust prompting” for one of the descriptors, which basically meant someone has to make me do it.

    Think of it another way: if you had a headache and someone “robustly prompted” you to take medication, it would help you in the long run.

    Sorry if this is unhelpful, I know OCD is very complex. These are just some thoughts from my experience.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    66Mustang said:
    Although @66Mustang suggested prompting to take meds, this wouldn't work unless the assistant is going to force feed me with them against my will!  It is the OCD/health anxiety that stops me being able to take any form of medication due to the risk of adverse effects, I have not taken even a headache pill since 2003 as this is such a severe phobia for me.  I should of course be drugged up with anxiety meds, IBS meds, reflux meds, etc if the Doctors had their way!  The lack of meds has been used against me in the assessment and the MR.

    I understand where you are coming from but it sounds like prompting would actually help you, even if you don’t want any (which by its very nature you probably don’t, you just want to be left alone). I have been there myself.

    As for being forced I actually used the phrase “robust prompting” for one of the descriptors, which basically meant someone has to make me do it.

    Think of it another way: if you had a headache and someone “robustly prompted” you to take medication, it would help you in the long run.

    Sorry if this is unhelpful, I know OCD is very complex. These are just some thoughts from my experience.
    You can take a horse to water, but you can't make it drink.  No matter how robustly you prompt it... ;) 

    I do see what you're saying though, and that is a very interesting thought about meds helping in the long run if I was forced to take them.

    All replies are helpful, I'm certainly not intending to dismiss any of them, even if I am coming across as a bit of an ass at the moment! :#
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    You're not coming across as an ass @OverlyAnxious. I do worry you may be overthinking the descriptors and therefore not understanding them. @mikehughescq is a Welfare Rights Officer and can see how you'd score points just on your descriptions you've shared here with us. 
    I really wish there was a way you could access some support with this and will keep looking for other suggestions. 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    So, it's been over 2 weeks now since I received my bundle - presumably the DWP sent one to HMCTS at the same time?  But the online tracker still hasn't updated, still says DWP haven't responded to them.  Just wondered if anyone else had submitted an online appeal recently how long it took between receiving the bundle and the online system updating?  I can't use phones as I've said many times now (I'm sure you're all bored of hearing lol!) so can't phone to check if it's got there or not.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Yes, HMCTS will have received exactly the same as you. I have no idea how long it takes to update online.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    Online system updated today lol...  16 days (12 working days) after receiving the bundle myself just in case anyone else is in the same position.

    Just got to wait for the hearing date now...
  • worried33worried33 Member Posts: 399 Pioneering

    The only place I might score 2 points is mixing with people...but because I attend the assessments alone and will be at the tribunal alone I'm almost certain I won't score anything there.

    ----

    I feel so bad for you, I quoted this bit because I 100% agree, it feels like a lose/lose is forced on those who cannot get someone to attend with them, not all mentally ill people have support, and the DWP enforce attending f2f (when they are deemed required), so you either effectively close your claim by not attending, or attend and then get told you must have no mental issue because you handled a f2f by yourself (this applies for home visits also).

    On the other stuff, been able to lift food to your mouth doesnt mean 0 points for food, I can do that, but I got points because I need a stool to prepare it. Similar with bathroom, if you need an aid, then you should get points.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    edited December 2019
    worried33 said:

    The only place I might score 2 points is mixing with people...but because I attend the assessments alone and will be at the tribunal alone I'm almost certain I won't score anything there.

    ----

    I feel so bad for you, I quoted this bit because I 100% agree, it feels like a lose/lose is forced on those who cannot get someone to attend with them, not all mentally ill people have support, and the DWP enforce attending f2f (when they are deemed required), so you either effectively close your claim by not attending, or attend and then get told you must have no mental issue because you handled a f2f by yourself (this applies for home visits also).

    On the other stuff, been able to lift food to your mouth doesnt mean 0 points for food, I can do that, but I got points because I need a stool to prepare it. Similar with bathroom, if you need an aid, then you should get points.
    Thanks, as you say there must be a lot of people in similar situations!  I seem to be a special case to be fair (in more ways than one! :D ), whereas the majority of people do find it easier to do things with the help of another person...I find it more difficult the more people that are added to any situation, regardless of how long I've known them.  But that does also mean I don't need to pay for a carer/assistant which is ultimately what PIP is designed for really.  

    I had to try and make a 'family' visit last week, in a familiar location but with 3 people instead of the usual 1...it caused me huge problems, hours in the bathroom before leaving, constant uncontrollable shaking, nausea etc, I forced myself there and it took 10 minutes before I could even get through the door, and even then that was only because I needed to use the bathroom urgently and wouldn't have made it home!  After that I tried to sit in the front room with them but could barely get any words out, couldn't make any eye contact and lasted about 30 mins before having to leave completely and was in a right state for the rest of the evening.  That's just been another massive knock to the PIP process really, I'm now almost certain I won't be able to get into the tribunal with 3 other people in an unfamiliar location, let alone stay there for any length of time.

    With regards to lifting food to my mouth, I should've made it clearer, that part is for the 'taking nutrition' descriptor, not food preparation.  I also don't use any bathroom aids...and sadly they don't count using huge amounts of loo roll, water, electric (water heating) and soap as extra costs incurred by my conditions (IBS & OCD for this part).
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You said, " But that does also mean I don't need to pay for a carer/assistant which is ultimately what PIP is designed for really."

    I disagree to some extent. PIP doesn't have to be used for help/support or anything along those lines. It's there to help because people who have a disability and find it more difficult to do things than a person who doesn't have a disability. It's there to help with the cost of life in general. It can be spent on anything you want to spend it on.

    I don't pay for a carer or support, my PIP goes on my heating/water costs during the winter months because i keep my heating on about 18 hours a day because the cold makes my condition a million times worse. I also use the bath daily because hot water also helps my pain when it's at it's worst and this is every evening and a bath will help reduce those pain levels, even if it's for a short period of time.

    I completely agree with others here and i also think you're missing the point here and the more i read your comments the more convinced i am that you do qualify for PIP but you seem to be looking for reasons why you won't score those points, instead of finding the reasons why you would. Remember HMCTS will apply case law, DWP don't.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    I do appreciate that PIP can be used for anything, but I still believe it was originally set up to pay for care, especially as all the questions ask about assistance and prompting.  My Nan had carers quite often so I do understand the high costs associated with that, compared to a bit of extra loo roll...but equally I've bought bathroom aids for elderly relatives, so know that the small one-off cost of a raised toilet seat for example, is considerably less than the ongoing extra cost's of my utility and grocery bills.  It's difficult to make the system totally fair though.

    I'm looking for any questions I could be asked so that I've got an answer for them when it comes to tribunal, I can't wing things on the day and will just get flustered if I haven't got some answer ideas prepared.  Unfortunately I'm just seeing lots of questions that I don't know how to answer or justify.  With respect, a few members have now said they can see points that I should be awarded for PIP in my comments, but without elaborating on that and I'm struggling to see exactly where I should be focussing for those points.
  • cristobalcristobal Member Posts: 966 Disability Gamechanger
    edited December 2019
    @overlyanxious - I also think that you are overthinking this ...it's a good idea being prepared for the tribunal but you won't be able to anticipate every question.If you think about it long enough then you will find a problem but life doesn't come with a pre-prepared script unfortunately!!

    Don't forget also that whilst people offer advice and opinion on here (myself included) no-one knows your condition as well as you. Decide in which areas you should have scored points and justify this...

    My advice - you've submitted your application so forget about it now until you get the date. On the day be yourself, and tell the truth.If you don't know the answer to a question then say so.

  • 66Mustang66Mustang Community Co-Production Group Posts: 4,687 Disability Gamechanger
    edited December 2019
    In my experience they sometimes use some common sense if you do not exactly and explicitly fit into one of the descriptors. I have noticed that on occasion they have applied the closest descriptor that vaguely fits. So for example if you use abnormal amounts of toilet roll in the toilet, or shower gels in the shower, they may class this as needing to use an aid or appliance. I would say it is definitely worth mentioning at the tribunal.

    Also, remember you can score points for “help you need but don’t get”. I really think, based on you mentioning that you are undernourished, that you need prompting to eat even if you don’t want or get this prompting.

    Also, based on your most recent few posts, it sounds as if you should score points for engaging with others face-to-face. I know you just about managed it with difficulty but remember the decision is based on how you are for the majority of the time so if most of the time you cannot manage it then say so. It is important for mental health to tell them about your good and bad days and tell them how many days are good and how many are bad. Also make sure they are well aware of the problems you still face on a good day.

    This is probably no help but just thought I should mention. If you have any questions about where I scored points for contamination OCD I’m happy to let you know.
  • 66Mustang66Mustang Community Co-Production Group Posts: 4,687 Disability Gamechanger
    edited December 2019
    I agree with what you say though in that the descriptors do seem to exclude a lot of your problems, even though they are perfectly valid ones! I had similar issues but still managed to score points while suffering from “contamination” OCD.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited December 2019
    I do appreciate that PIP can be used for anything, but I still believe it was originally set up to pay for care, especially as all the questions ask about assistance and prompting.  My Nan had carers quite often so I do understand the high costs associated with that, compared to a bit of extra loo roll...but equally I've bought bathroom aids for elderly relatives, so know that the small one-off cost of a raised toilet seat for example, is considerably less than the ongoing extra cost's of my utility and grocery bills.  It's difficult to make the system totally fair though.



    The cost of aids is irrelevant because no one has to or needs to buy any of those. A needs assessment can be done by self referring to a local council and those aids are given free.

    I also agree with @cristobal forget about it for a while because you most likely have a very long wait for the hearing date and if you don't at least try to forget about it, it will make you worse.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    cristobal said:
    @overlyanxious - I also think that you are overthinking this ...it's a good idea being prepared for the tribunal but you won't be able to anticipate every question.If you think about it long enough then you will find a problem but life doesn't come with a pre-prepared script unfortunately!!

    Don't forget also that whilst people offer advice and opinion on here (myself included) no-one knows your condition as well as you. Decide in which areas you should have scored points and justify this...

    My advice - you've submitted your application so forget about it now until you get the date. On the day be yourself, and tell the truth.If you don't know the answer to a question then say so.

    Hmm, that's odd...it's not like me to overthink things! :D  Talking of overthinking, I suddenly thought about clothes last night...I know it's not a proper court but do you still have to wear smart clothes or are jeans and jumper ok?  Will I be turned away in trainers like a nightclub lol?

    I generally do have a script prepared for any conversation I have to make...nothing worse than the other person going off script when it comes to the real thing! :#  I find it much easier to write stuff down in my own time using email or messenger (or forums!) than immediate vocal conversations.  It's not so much not knowing answers as not being able to 'grab' them in the pressured environment of a F2F or telephone.  I often just come out with utter rubbish and contradictions which probably makes it appear like I'm making it up on the spot.

    The main thing I've learnt from this process is that I really don't know my conditions well at all lol.  I've never felt so different and 'less able' as I do now after having to scrutinise every aspect of my life against a 'normal' persons life for the purposes of PIP.

    I am going to take your advice and ignore it all for now though...  I've got a mental assessment and a dental visit to try and get through this week, before obviously xmas next week, so should have enough to keep me distracted for now!  
  • OverlyAnxiousOverlyAnxious Member Posts: 1,268 Disability Gamechanger
    I do appreciate that PIP can be used for anything, but I still believe it was originally set up to pay for care, especially as all the questions ask about assistance and prompting.  My Nan had carers quite often so I do understand the high costs associated with that, compared to a bit of extra loo roll...but equally I've bought bathroom aids for elderly relatives, so know that the small one-off cost of a raised toilet seat for example, is considerably less than the ongoing extra cost's of my utility and grocery bills.  It's difficult to make the system totally fair though.



    The cost of aids is irrelevant because no one has to or needs to buy any of those. A needs assessment can be done by self referring to a local council and those aids are given free.

    I also agree with @cristobal forget about it for a while because you most likely have a very long wait for the hearing date and if you don't at least try to forget about it, it will make you worse.
    Thats a very good point!  It does make me wonder what the money is intended to pay for if you score points for aids then...  I know you'll say I'm still overthinking it though! :D

    My Nan can afford her own aids (though we do have the VAT taken off because she has a blue badge) and would be too proud to have them from the council.  She is very much of the opinion that we should only buy things we can afford by working for them, as are most of my family...  That probably helps explain why I feel so guilty being unable to work and having to take ESA & HB, let alone PIP as well lol! :) 

    As above, I will try and forget about the tribunal for now.  Thanks for all your help so far!
  • 66Mustang66Mustang Community Co-Production Group Posts: 4,687 Disability Gamechanger
    The main thing I've learnt from this process is that I really don't know my conditions well at all lol.  I've never felt so different and 'less able' as I do now after having to scrutinise every aspect of my life against a 'normal' persons life for the purposes of PIP. 
    I felt like that as well after going through the assessment. It is very depressing having to fill out the forms etc. as it is so negative to focus on what you can’t do. It makes you sound like a bit of a failure - almost like writing a CV but putting all the bad things in rather than the good haha.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @OverlyAnxious regarding what to wear for the hearing.... simple answer is, what you would usually wear. Why? because you just need to be yourself, nothing more, nothing less.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
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