I feel trapped in my own home, and that I have been awarded TOO MUCH PIP.
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Earlysound
Community member Posts: 37 Connected
Hello,
I am going to attempt to keep this as brief as possible to avoid confusing you and confusing me. About a month or so back, I received my decision in regards to my PIP renewal. In the renewal we once again attempted for enhanced daily living, and standard mobility (due to overwhelming psychological distress, after having seen the recent high court ruling)
At the time of receiving my renewal form, we declared nothing had changed, and once again attempted to score points both in daily living as well as STANDARD MOBILITY. In previous attempts I have always been awarded enhanced daily living, and always been declined standard daily living despite mine and my community mental health teams attempts.
In a surprising, and not so surprising turn of events I was reduced from enhanced daily living to standard (surprising, and shocked) and once again declined mobility - wasn't surprised at the time, but once again frustrated as this time they decided to award me - ". Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. " and scored me four points, which is obviously not enough to score the required 10 points to be awarded standard mobility. HOWEVER, I want to make clear that I DID NOT apply for mobility under the above, but instead applied for mobility under - " Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." and take very good note of unfamiliar journey.
However, this is where things have taken an unexpected turn, although it would appear positive the decision has terrified of me going outside, and touching any of the money. I decided to appeal the decision, and apply for a mandatory reconsideration. My Psychiatrist, Support Worker and General Practitioner all wrote letters of support, and refuted the Health Professionals findings in the report to justify her decision to the DWP.
Under Activity 11, Planning and following journeys - the assessor awarded ". Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. " she stated that "The claimant, is known to be avoidant of the community, but it is reported from his support worker that he will undertake short journeys to local shops, but in the evening during quieter times. " - this is true, but I am not always capable of doing this and will often require assistance from siblings, and or mother.
However, the assessor goes onto say that I am also avoidant of public transport, and prefers not to use it. I categorically would not use public transport, both for familiar or unfamiliar journeys without assistance from a person I was familiar with, like a professional or a family member. She states that If I had to travel any distance to appointments I would choose to get a lift from a family member or a taxi if absolutely necessary - this would happen in all circumstances, not only if absolutely necessary. She goes onto say that no evidence was provided to support that undertaking any journey would cause him overwhelming psychological distress - which again is false.
The Community Mental Health Team and General Practitioner put together a letter disputing all of the above, and stated that "Earlysound, would suffer overwhelming psychological distress when undertaking a journey, in particular if an unfamiliar route using public transport as supported by the letter from his GP" amongst other things such as "The PIP Assessment Guide for
I am going to attempt to keep this as brief as possible to avoid confusing you and confusing me. About a month or so back, I received my decision in regards to my PIP renewal. In the renewal we once again attempted for enhanced daily living, and standard mobility (due to overwhelming psychological distress, after having seen the recent high court ruling)
At the time of receiving my renewal form, we declared nothing had changed, and once again attempted to score points both in daily living as well as STANDARD MOBILITY. In previous attempts I have always been awarded enhanced daily living, and always been declined standard daily living despite mine and my community mental health teams attempts.
In a surprising, and not so surprising turn of events I was reduced from enhanced daily living to standard (surprising, and shocked) and once again declined mobility - wasn't surprised at the time, but once again frustrated as this time they decided to award me - ". Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. " and scored me four points, which is obviously not enough to score the required 10 points to be awarded standard mobility. HOWEVER, I want to make clear that I DID NOT apply for mobility under the above, but instead applied for mobility under - " Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." and take very good note of unfamiliar journey.
However, this is where things have taken an unexpected turn, although it would appear positive the decision has terrified of me going outside, and touching any of the money. I decided to appeal the decision, and apply for a mandatory reconsideration. My Psychiatrist, Support Worker and General Practitioner all wrote letters of support, and refuted the Health Professionals findings in the report to justify her decision to the DWP.
Under Activity 11, Planning and following journeys - the assessor awarded ". Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. " she stated that "The claimant, is known to be avoidant of the community, but it is reported from his support worker that he will undertake short journeys to local shops, but in the evening during quieter times. " - this is true, but I am not always capable of doing this and will often require assistance from siblings, and or mother.
However, the assessor goes onto say that I am also avoidant of public transport, and prefers not to use it. I categorically would not use public transport, both for familiar or unfamiliar journeys without assistance from a person I was familiar with, like a professional or a family member. She states that If I had to travel any distance to appointments I would choose to get a lift from a family member or a taxi if absolutely necessary - this would happen in all circumstances, not only if absolutely necessary. She goes onto say that no evidence was provided to support that undertaking any journey would cause him overwhelming psychological distress - which again is false.
The Community Mental Health Team and General Practitioner put together a letter disputing all of the above, and stated that "Earlysound, would suffer overwhelming psychological distress when undertaking a journey, in particular if an unfamiliar route using public transport as supported by the letter from his GP" amongst other things such as "The PIP Assessment Guide for
Healthcare Professionals states that ‘a person should only be considered able to follow an unfamiliar journey, if they would be capable of using public transport'. Earlysound is not capable of doing this reliably, and is therefore unable to follow the route of an unfamiliar journey." the letter then goes onto mention "In [2016] UKUT 420 (AAC) Judge Jacobs confirms that, although the DWP guidance on Activity 11 defines a journey as being a 'local' journey, the legislation does not state this and there is therefore no requirement for the descriptor to be assessed in relation to a local journey."
and then the letter mentions something in relation to "Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." (this falls under Descriptor 1D - under Activity 11 for planning and following journeys - just as a side note to the post for later on). - the letter carries on to highlight the following:
and then the letter mentions something in relation to "Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." (this falls under Descriptor 1D - under Activity 11 for planning and following journeys - just as a side note to the post for later on). - the letter carries on to highlight the following:
" In AA v SSWP (PIP) [2018] UKUT 339 (AAC) Judge Hemingway states the Secretary of
State’s representative points out, mobility descriptors 1d and 1f refer to “a familiar journey”
and “an unfamiliar journey” rather than using the term “any journey” which is used in
mobility descriptors 1b and 1e (my underlining). The Secretary of State says, in effect, that
that difference in wording means that a person who can make some but not other familiar
journeys or who can sometimes but not always make familiar journeys is not excluded from
the ability to score under mobility descriptors 1d or 1f merely through that limited ability."
Now to be clear, descriptor 1F states "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. "
Guess what I got awarded, even though the letter made it clear about my difficulties with unfamiliar journeys... The DWP, after looking at my mandatory reconsideration, and the newly provided evidence provided in the letter mentioned above and I am presuming referring back to the assessors report, and prior available evidence - have decided to award me the enhanced daily living and enhanced mobility rate. I only found out the decision two days ago over the phone, so have yet to get an actual physical copy of the decision letter from the DWP so I have had not had a chance to look at the reasoning behind their decision. It would appear they've scored me 12 points under "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. " and not the 10 points under "Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." which is what I was expecting, since the letter made it discussed difficulties in relation to unfamiliar journeys.
I'm basically worried that I am no longer allowed to walk to my local corner shop to get milk, or collect goods within my local area when I feel capable of doing so and assistance is not always available - I live independently, and so my siblings and mother aren't always on hand to support me.
Now to be clear, descriptor 1F states "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. "
Guess what I got awarded, even though the letter made it clear about my difficulties with unfamiliar journeys... The DWP, after looking at my mandatory reconsideration, and the newly provided evidence provided in the letter mentioned above and I am presuming referring back to the assessors report, and prior available evidence - have decided to award me the enhanced daily living and enhanced mobility rate. I only found out the decision two days ago over the phone, so have yet to get an actual physical copy of the decision letter from the DWP so I have had not had a chance to look at the reasoning behind their decision. It would appear they've scored me 12 points under "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. " and not the 10 points under "Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." which is what I was expecting, since the letter made it discussed difficulties in relation to unfamiliar journeys.
I'm basically worried that I am no longer allowed to walk to my local corner shop to get milk, or collect goods within my local area when I feel capable of doing so and assistance is not always available - I live independently, and so my siblings and mother aren't always on hand to support me.
Regulation 7 of the main PIP regulations provides that the descriptor which applies to the claimant in relation to each activity is -
- where one descriptor is satisfied on over 50 per cent of the days of the required period, that descriptor;
"A scoring descriptor can apply to claimants in an activity where their impairment(s) affects their ability to complete an activity, at some stage of the day, on more than 50 per cent of days in the 12 month period. The following rules apply: If one descriptor in an activity is likely to apply on more than 50 per cent of the days in the 12 month period – i.e. the activity can be completed in the way described on more than 50 per cent of days – then that descriptor should be chosen."
I do feel the above does apply for me, as on over 50% of the days during the required period I "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. " I can't always just walk to the local supermarket even though it's a familiar journey, the same as going to the local corner shop to purchase milk etc - same also applies to hospital appointments, and doctors appointments with my GP as 99% of the time
I'm not always capable of making the fifteen minute walk even though it's a familiar journey to local supermarket (further than the corner shop, which is just literally around the corner from where I live) due to psychological distress, or that I could arrive at the store and then bolt due to overwhelming psychological distress that can be brought on suddenly, and then I would be at risk travelling home even though again I know my way too and from the supermarket etc. In terms of hospital appointments, although I could plan the journey to the hospital in terms of knowing which bus to use, and navigate through the hospital and I would say I am familiar with the journey, I am ALWAYS assisted in this 100% of the time, with the help of my mother or a health professional (I will sometimes, pay for a carer to assist me at times - when family is not available to help). I would NEVER undertake an unfamiliar journey without assistance, and this could cover a lot of my local area, as I don't go to areas/places I have not been too before without assistance.
I am just shocked and surprised, to me being awarded enhanced mobility rate even though the letters from my community mental health team, and the general practitioner seemed to focus more on difficulties caused by unfamiliar journeys.
Comments
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@Earlysound I don't know why you're worried about going out when you can. You've been assessed and the outcome is correct from what you say and the PIP regulations are that even if you need the help for whatever descriptor is chosen you don't need to actually get the help. For example if someone needs help bathing but they live alone and help isn't always or ever available they can still be given the descriptor score for the help they would need if they had someone there all the time. I'm pretty sure I'm right. Correct me anyone if I'm not.
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I have heard my support worker mentioning something about this, but in relation to require prompting and that it does not matter if someone is not there to always prompt you, but that it's been identified you need prompting. I'm still not sure if this applies, and again like yourself am not sure if that's right as I can't seem to find any reference to such scenarios where a need is identified, but isn't being met etcwildlife said:@Earlysound I don't know why you're worried about going out when you can. You've been assessed and the outcome is correct from what you say and the PIP regulations are that even if you need the help for whatever descriptor is chosen you don't need to actually get the help. For example if someone needs help bathing but they live alone and help isn't always or ever available they can still be given the descriptor score for the help they would need if they had someone there all the time. I'm pretty sure I'm right. Correct me anyone if I'm not. -
"The assessment does not look at the availability of help from another person but rather at the underlying need. As such, claimants may be awarded descriptors for needing help even if it is not currently available to them – for example, if they currently manage in a way that is unreliable, but with some help they could complete the activity reliably."Earlysound said:
I have heard my support worker mentioning something about this, but in relation to require prompting and that it does not matter if someone is not there to always prompt you, but that it's been identified you need prompting. I'm still not sure if this applies, and again like yourself am not sure if that's right as I can't seem to find any reference to such scenarios where a need is identified, but isn't being met etcwildlife said:@Earlysound I don't know why you're worried about going out when you can. You've been assessed and the outcome is correct from what you say and the PIP regulations are that even if you need the help for whatever descriptor is chosen you don't need to actually get the help. For example if someone needs help bathing but they live alone and help isn't always or ever available they can still be given the descriptor score for the help they would need if they had someone there all the time. I'm pretty sure I'm right. Correct me anyone if I'm not.
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Yes I only hesitated because my assessment was in 2017 and it applied then, but that was 2 years ago and I'm not up to date with any changes. However thinking logically it makes sense that not everyone has help but that doesn't mean they don't need it. I struggle big time getting in and out of the bath putting myself at risk but prefer not to have help till I absolutely need it. It doesn't mean I don't need the help now. I wasn't awarded as needing help for bathing but since then the transfer board I was given by an OT has gone back as it was useless for me. I hope now you will carry on going to the shop when you feel able and not feel guilty about it. Just think of it as one of your less than 50% of the year days.
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Yes, I am also thinking that "The assessment does not look at the availability of help from another person but rather at the underlying need. As such, claimants may be awarded descriptors for needing help even if it is not currently available to them – for example, if they currently manage in a way that is unreliable, but with some help they could complete the activity reliably." covers it pretty much as well.I live independently, and therefore I do not have someone immediately on hand to assist me at short notice. My mother, and siblings do not live in the immediate area and so they're not available at short notice either to help me. Anything that requires me to travel any reasonable distance, I have to have some form of assistance from family. I am interpreting this to mean that, just because I have been identified as "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. " It is identifying that I need assistance to follow the route of a familiar journey, and not at the availability of another person to help me achieve this reliably even though the help is needed.wildlife said:Yes I only hesitated because my assessment was in 2017 and it applied then, but that was 2 years ago and I'm not up to date with any changes. However thinking logically it makes sense that not everyone has help but that doesn't mean they don't need it. I struggle big time getting in and out of the bath putting myself at risk but prefer not to have help till I absolutely need it. It doesn't mean I don't need the help now. I wasn't awarded as needing help for bathing but since then the transfer board I was given by an OT has gone back as it was useless for me. I hope now you will carry on going to the shop when you feel able and not feel guilty about it. Just think of it as one of your less than 50% of the year days.
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I was going to mention the 50% thing, but I didn't know if I was correct, plus I'm pretty anxious after my assessment.
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I just want to know that I won't get penalised, and punished for undertaking the occasional familiar journey, especially since it's the DWP who've identified "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. " and although that's true for more than 50% as explained several times above - I don't always have someone available to help, as immediate assistance is simply not available to me and at times I do feel capable of going to my local shops, but for the most of the time I am reliant on assistance, but at the same time even when I do feel capable I can still place myself at risk, because I am prone to sudden episodes of overwhelming psychological distress simply due to the nature of my mental health disorder (personality disorder) and it's during these times I would become a risk whilst undertaking a journey as I also have problems with engaging with people, both in familiar and unfamiliar places and with familiar and unfamiliar people - I am prone to becoming angry, and threatening which in the past and mentioned in the letter sent to the DWP this has caused me to be barred from a GP practice, as I have a very strong tendency to misunderstand situations and get extremely frustrated within literal seconds (I'm considered emotionally unstable) - and it's identified that I need support with face to face engagements as a result. The letter sent to the DWP mentions "Earlysound requires a lot of support, both to communicate and prevent himself from becoming distressed"WF2k said:I was going to mention the 50% thing, but I didn't know if I was correct, plus I'm pretty anxious after my assessment. -
Does this also mean that I am now required to hire a personal assistant, so someone is now always with me when going outside? So much for personal independence... always having to be with someone.
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Earlysound said:Does this also mean that I am now required to hire a personal assistant, so someone is now always with me when going outside? So much for personal independence... always having to be with someone.No you do not need to hire a PA. Do not feel trapped at home, if you are able to go out on occasions then that is good, you will not be penalised for doing so.How long is your award for ?Be all you can be, make every day count. Namaste
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Are you sure? I just feel odd as all the evidence provided before the mandatory reconsideration, and the evidence provided most recently - clearly highlights difficulties in relation to "Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." and the term unfamiliar is used throughout the supporting evidence I sent from the Community Mental Health Team and General Practitioners for my mandatory reconsideration. It's until 2022? I think.. I've not actually received the decision letter, I was just made aware of the decision and had it confirmed several times over the telephone, so I can't see why the DWP has decided upon reviewing my assessment, to not award points in "Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." but instead feel that the criteria for "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. " has been met. I am thinking this has to do with "The descriptor refers to “a familiar journey” rather than “any familiar journey”. Accordingly, claimants can satisfy the descriptor by showing that they typically need to be accompanied by another person or an assistance dog or to use an orientation aid on the majority of days when undertaking familiar journeys (it’s not necessary to show that they need such support for every possible familiar journey on most days)." and "A scoring descriptor can apply to claimants in an activity where their impairment(s) affects their ability to complete an activity, at some stage of the day, on more than 50 per cent of days in the 12 month period" and also I feel it's important to remember that you're being asked if you ‘cannot’ do certain activities and that its important to remember that ‘cannot do something’ means ‘cannot safely, reliably and repeatedly do it most of the time’. of which I am unable to achieve the above, safely, reliably and repeatedly on most days.CockneyRebel said:Earlysound said:Does this also mean that I am now required to hire a personal assistant, so someone is now always with me when going outside? So much for personal independence... always having to be with someone.No you do not need to hire a PA. Do not feel trapped at home, if you are able to go out on occasions then that is good, you will not be penalised for doing so.How long is your award for ? -
No, you should be fine, try not to worry.
CockneyRebel knows what he/she is talking about
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Can you explain OPD? It's reassuring to hear that I can still go out, and on my own at times. I was dreading scenarios where I have ran out of food, and no one can come help me for a few days and I am stuck in my apartment with fear of going out and being seen.ilovecats said:As a former assessor, OPD only has to be present on the majoirty of days as mental health is known to fluctuate so please don't worry. It is hard to score OPD so I am fairly confident that you fit the description properly. You can still go out, on your own! You don't need to hire a PA. -
Why does it matter about scoring on OPD, as they scored me on "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid." even though we were seeking points to be awarded under ". Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." Yes, I have OPD and the evidence stated as such - you mention your'e fairly confident I fit the description - but "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid." does not mention OPD ? So I am confused still.ilovecats said:As a former assessor, OPD only has to be present on the majoirty of days as mental health is known to fluctuate so please don't worry. It is hard to score OPD so I am fairly confident that you fit the description properly. You can still go out, on your own! You don't need to hire a PA. -
Thanks, would you mind checking my next response also - what is your opinion after reading my main post as a whole, any idea why they could of put me onto "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid." when we were instead attempting to be scored under ". Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." I'm curious on your view on this, based on your experience of carrying out assessments.ilovecats said:
Overwhelming psychological distress is when your mental health prevents you from functioning correctly resulting in you not being able to follow a journey, safely, reliably and on the majority of days. If they awarded it to you then it means you likely really to deserve it because proving that OPD affects you it hard.Earlysound said:
Can you explain OPD? It's reassuring to hear that I can still go out, and on my own at times. I was dreading scenarios where I have ran out of food, and no one can come help me for a few days and I am stuck in my apartment with fear of going out and being seen.ilovecats said:As a former assessor, OPD only has to be present on the majoirty of days as mental health is known to fluctuate so please don't worry. It is hard to score OPD so I am fairly confident that you fit the description properly. You can still go out, on your own! You don't need to hire a PA. -
Thanksilovecats said:The reason OPD is not specifically mentioned in the descriptor is because other reasons to be awarded can apply
e.g:
-Epilepsy with unpredictable seizures without a useful warning / an or a period of confusion causing safety concerns,
-Learning difficulties with no concept of danger or 'stranger awareness'
-Totally blind people
-etc
F to apply with regards to mental health there has to be OPD or a safety concern to yourself or others. A safety concern would mean a person is actively suicidal with intent or safety concerns e.g, violence towards others. If none of these were present in relation to mental health then it would be an A What do you make of my main post btw? Earlier I mentioned "what is your opinion after reading my main post as a whole, any idea why they could of put me onto "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid." when we were instead attempting to be scored under ". Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid." I'm curious on your view on this, based on your experience of carrying out assessments. " - not sure if you saw that as I got confused about post responses.
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If you read the bulk of my main post, you can see it's around my confusion of why they scored me points on "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid." when we were instead attempting to be scored under ". Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid.". If an applicant, is attempting to score points only for the lower component of mobility based on unfamiliar journeys - which only ten points is required to achieve, why would they decide to go above and beyond and decide to score me 12 points under "f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid.".ilovecats said:Sorry, I'm not quite sure what you are asking me?
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I don't know if this link would help you at all @Earlysound
https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria
I know how you feel, I questioned the fact I had scored points in can't go out at all because I never said I don't go out and the assessor said in her report that I attended the medical centre every 3 months for check ups (was for gout at the time). Poppy posted the link above, I went off and looked at it and I was like "oh right, that's why I scored points there, there and there". I have severe anxiety (agoraphobia and maybe social anxiety), depression and FM. I don't go out alone at all now. -
HiYour GP and CMHT have put together a good case for you, which the case manager could understand. The HCP is only able to give recommendations based on a small snapshot of your life and while the CM is led by this, as was the case before your MR it is only a recommendation. Having supplied good and relevant evidence for your MR, the case manager was able to see a bigger picture and awarded you the correct level of benefit. It is far to easy to get bogged down in the way the regs are written but a CM will understand them better than most.You should ask for a copy of the assessment report and the MR report for your recordsBe all you can be, make every day count. Namaste
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Thanks, I feel a lot happier now.CockneyRebel said:HiYour GP and CMHT have put together a good case for you, which the case manager could understand. The HCP is only able to give recommendations based on a small snapshot of your life and while the CM is led by this, as was the case before your MR it is only a recommendation. Having supplied good and relevant evidence for your MR, the case manager was able to see a bigger picture and awarded you the correct level of benefit. It is far to easy to get bogged down in the way the regs are written but a CM will understand them better than most.You should ask for a copy of the assessment report and the MR report for your records -
Sometimes the system does work in a claimants favour. Many claimants do underplay the extent of their problems and even more exaggerate. CM's may not be perfect but rest assured they will not give you an award that you do not meet the criteria for.
Be all you can be, make every day count. Namaste
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