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DLA to PIP - A Personal Experience

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5 years 7 months ago #216715 by PC Pilot
DLA to PIP - A Personal Experience was created by PC Pilot
Hi to all,

Firstly, I am not sure that I have posted this response in the appropriate place and so trust the moderators will move it as they consider necessary to satisfy that requirement.

I would also like to take this opportunity to convey my thanks to Gordon and all of the forum contributors for your comprehensive and authoritative guidance in respect of completing the transfer from DLA to PIP, bless you all!

As I am now some distance along this excruciating journey I wanted to offer something back and hope that my experience of facing this daunting challenge will be of some assistance to those yet to embark upon the process and so I offer it here in that spirit.

At this point it is important to note that I have not, as yet, received my decision so the observations and comments I offer merely illustrate the situation exactly as I found it untainted by the success, (or failure) of my PIP application and any award (or otherwise) the DWP are yet to make. Fingers crossed for that...

TRANSFERRING FROM DISABILITY LIVING ALLOWANCE (DLA) TO PERSONAL INDEPENDANCE PAYMENT (PIP) - ONE CLAIMANT'S EXPERIENCE

My First Awareness of PIP

In common with many disabled people, I first became aware of the government's decision to introduce PIP as a replacement for DLA in 2013 when its intention to commence transferring DLA recipients between the ages of 16 and 64 to this new benefit was communicated as part of the annual DLA award paperwork.

Soon after its introduction I began to hear horror stories about DLA claimants selected to go through the transfer and the appalling impact it had upon their lives, as a result I lived in fear ever since. It was soon apparent that these were not isolated instances and this was somewhat reinforced when my disabled advisors began to make it clear that the best policy was to wait for my 'invitation' letter, and not to seek any additional support which would invoke PIP and thus put at serious risk the existing support I already received under DLA.

Background

Having been diagnosed in the 1970's with a rare Muscular Dystrophy (from birth) I have had many years’ experience coping with disability. Despite significant challenges during my schooling and later in the workplace, I found this was nothing compared to the extreme stress I experienced attempting to satisfy the DWP of my entitlement to PIP.

My PIP Invitation

My turn came in spring this year with the unwelcome receipt of my own 'invitation' letter. I felt extremely anxious from the outset and considered that even the choice of language used in that first letter was more hostile than supportive. Whilst I am sure that it complied with all necessary legislation it was clear it focused on the effects that losing benefit would bring, obviously preparing the recipient to get used to that concept!

As my conditions are quite variable I find that I require full concentration to give important matters my best attention and presenting deadlines such as those which accompany PIP unnecessarily elevates my stress levels which is counterproductive in this respect. Eventually, I composed myself sufficiently to make the call providing the required identification and medical details to get the process underway. One question I hadn't anticipated however was whether I should like to request any DWP medical's held on file in respect of my DLA. I confirmed that I did indeed wish to receive a copy.

After the call I somewhat anxiously sought to find out as much as possible whilst waiting for the PIP2 form to arrive. Fortunately my research led me to 'Benefits and Work' which I joined and began to make myself conversant with the PIP process using the guide I had by then downloaded.

Preparation

Despite identifying such a helpful resource, my anxiety levels were clearly still rising as I was now experienced overwhelming fatigue, was not sleeping nor eating properly, all of which impacted severely upon my physical health with increased strain on my muscles, cramps and pains along with a general overall weakness. As I had already arranged to see my doctor to organise an up to date letter in support of my application I took the opportunity to raise the additional symptoms I was now experiencing. The doctor believed that these were directly attributed to the stress of undertaking the enforced transfer to PIP, a situation which continues to affect me to this day.

As I indicated earlier I have throughout followed the excellent Benefits & Work PIP Guide and in line with its recommendations I began to compile a comprehensive dossier of supporting evidence to eventually accompany the PIP2 form. This 'supporting evidence' as provided by the many consultants involved in my complicated medical background together with my GP, alongside supportive anecdotal evidence from a friend (as I have no relatives), was carefully selected to focus entirely upon the effects of my functional impairments rather simply confirmation of any medical diagnosis. This was one of several important points which became apparent having closely studied the guide.

I can only say that I became consumed with the guide until I fully understood the PIP process and how the law intended for it to be applied. I contrasted this in turn against the many 'real world' experiences of those with similarly rare and complex neurological disorders fighting the system and the shameful treatment handed out to them by assessment providers and their DWP masters. Eventually, though worn out, I felt I had sufficient understanding to appropriately respond to the numerous questions required of the overly complicated PIP2 Questionnaire I had since received...albeit without the promised DLA Medical!

NB. Subsequent enquiries with the DWP established that the medical report had in fact been supplied to the assessment provider in line with 'usual practice' so it is best for others to be aware of this. I was however asked if I required a copy and confirmed that I did indeed wish to receive one.

The document arrived a short time later and comprised a comprehensive report by the doctor who I had seen, which summarised each of the various medical conditions and importantly, the functional limitations they caused me. Unfortunately, as the report was handwritten it was barely legible which I considered would be an issue as I had read of assessors/decision makers overlooking important supporting evidence because they were 'too difficult to decipher'. To me the logical solution was to provide a 'typed transcript' to accompany the original report and then to submit both as part of my supporting evidence.

The PIP2 Questionnaire

Unfortunately, as I am affected by several disabilities some related to my Muscular Dystrophy and others entirely separate, I was aware that even completing the form in sufficient detail would present a considerable challenge as I am unable to hold a pen to complete lengthy handwritten explanations of the sort required.

Although not apparent from either the form nor the accompanying 'guidance' document I discovered, from a DWP case manager who I had contacted to organise a deadline extension, that responses to those activities which required 'extra information' (your explanations of how the disability affects each activity) do not have to be written on the form itself but can instead be prepared on a computer and printed out as a separate document. The only requirement being that each "additional sheet" be identified as to which question number it refers to and to be appended with page numbers (if more than a single sheet), Your Full Name and National Insurance Number. As I final assurance I elected to handwrite "See Attached Sheet(s)" on each related "Extra Information" box on the questionnaire.

In a similar manner I typed out any relevant points not covered by the individual questions as "Q15 Additional Information" along with the full details of all my Health Professionals (Q1), list of my health conditions (Q2a) together with a complete list of all my medication and treatments (Q2b) leaving only the appropriate tick boxes and declaration to complete on the form itself.

Assisted by the Benefits and Work PIP Guide I was able to compose detailed explanations of how my impairments restrict me in each of the relevant activities which applied to me, taking care with each to concentrate upon carrying out the activity safely, reliably, repeatedly and in a timely fashion giving examples to explain each restriction. The eventual completed submission I returned to the DWP (within the agreed extended deadline) was by now in excess of 150 pages including the questionnaire itself, the supplementary sheets, supporting medical evidence the DWP medical and transcript.

I received a letter from the assessment provider around two weeks later advising a date for a face to face home assessment which had been arranged a further two weeks hence. Once again this had my anxieties in overdrive and throughout the intervening days I was confined to my bed for much of the time, I had lost all appetite was virtually unable to sleep and became very tetchy to any of my friends....no matter how I tried I simply could not get the damn PIP assessment out of my mind.

The Face to Face Assessment

On the appointed day I was joined by a friend who had offered to sit in with me for support and to act as an independent observer making notes about the topics discussed in the event there were to be any dispute regarding the subject matter. Again she was alarmed by the visible deterioration in me and on top of everything else I was also now experiencing bouts of breathlessness, something I had never before experienced. In fact, in my friend's opinion I looked dreadful, extremely tired, quite obviously weak and generally in poor health such that she questioned even going ahead at all. To be fair I was in considerable discomfort beyond the norm and did not feel at all well, but there was no way I was going to consider cancelling things at this point!

The assessor arrived within the allotted time slot and was let in by my friend who was briefly flashed an ID badge with insufficient time to even note so much as a full name. The assessor then introduced them self to me by Christian name only and I acknowledged with 'morning doctor' in the hope I would learn in which capacity they had been engaged. The response of 'good morning' continued to leave me in the dark, perhaps they were a doctor after all?

As required, I offered a range of identification which was briefly inspected and then returned. At no point was any explanation offered as to the basis of the assessment nor what was expected of myself, my friend or even the assessor which I found rather strange. The assessment proper then seemed to commence with some very odd and to me entirely irrelevant questions centred upon my 'qualifications'.

I drew attention to this and discussed in considerable detail the host of challenges I had experienced during schooling and the many functional limitations (and injuries) which resulted from my disability. I considered this to be far more relevant to an assessment of my 'social and occupational history' (which I had presumed to be the area of discussion) and was especially illustrative of the long term, progressive nature of my Muscular Dystrophy. Of course so as to remain 'compliant' I also provided those requested qualifications!

As the assessment progressed it was apparent that the line of questioning was being conducted in a hostile and largely disbelieving fashion. Given that, as highlighted in the guide, I was aware the assessor ‘should‘ have read the contents of my questionnaire together with the supporting evidence provided, I was left pondering why I had even bothered completing it in such comprehensive detail in the first place. Undaunted, I continued regurgitating each and every difficulty associated with the various activities that I had already described on my questionnaire (as outlined in the guide).

At one point during the assessment I had to ask my friend for a beaker of water as I had become breathless once more. As a result I was briefly unable to continue answering the now constant stream of questions. Alarmingly, these questions were frequently repeated, often in what appeared to be an attempt to disguise them from being recognised as the original I had already answered. I found this extremely challenging (simply to keep up) and considered the only conceivable purpose to be to lead me toward a preferred answer of the assessor's choosing.

Doggedly I persisted with the responses I had already provided on my questionnaire giving examples to illustrate issues of safety and/or reliability and/or not being able to repeat and/or not to do so in a reasonable time.

I am particularly concerned by this form of questioning especially so for somebody with problems of a cognitive nature or else with issues affecting recall such as those following a stroke or brain injury, let alone anyone with learning disabilities. Anybody suffering with any of these issues would be well advised to have a 'suitably briefed' supporter present to, at the very least, document examples of what is going on should it be required in the future.

Eventually, I was asked to consent to a Musculoskeletal Examination but I declined as I was experiencing considerable pain in my hips, knees and shoulders having already sat through considerably in excess of 2 hours of assessment. I was then invited to stand and move, this I did with considerable difficulty and pain before gingerly taking (slowly) a few paces with the support of my walker (aid). I continued a little further, still in evident pain by which time the assessor indicated they were satisfied and that I should return to my seat.

A few final questions about my weight and blood results drew the whole excruciating process to a final conclusion at close on three hours. I was exhausted for the next five days during which I struggled to compile a summary of the assessment from my own perspective using the notes taken by my friend on the day which, she believed to be too much for anyone with a genuine disability.

Post Assessment

Following the recommendation contained within the guide I had organised myself to complete the already prepared Face to Face Assessment Record Sheet (provided as part of the guide) immediately following the assessment. As my friend had recorded detailed bullet point notes throughout my assessment I had already determined that I would also compose a detailed summary from memory (aided by the notes) whilst this remained fresh in my mind.

In the event, whilst the record sheet was completed on the day of the assessment as intended, I was too tired to sit at the computer to begin compiling the detailed summary until two days later. Whilst the event remained indelibly imprinted on my mind I began to document the assessment though it took a further two days to complete as I was unable to sit for more than a couple of hours due to ongoing fatigue.

Eventually I was able to prepare a comprehensive multi page summary of the whole event from the notes taken on the day with the intention that they be compared against the assessor’s medical report once received.

After a week had passed (in line with responses on the forum) I contacted the DWP to request a copy of the assessor's medical report. It was confirmed that they had received the document and would send a copy on to me. This was eventually received the following week.

The Assessor's Medical Report Form - PA4

On receipt I closely examined the document and compared it with my own summary and by way of contrast I am able to offer the following observations:

1. I was now able to identify (with assistance from the Nursing and Midwifery Council) that my assessor was a recently qualified 'Learning Disabilities' Nurse with little/no experience.

2. A tick box on the report was checked indicating "The purpose & nature of the consultation has been clearly explained to the claimant" - it was not.

3. Reference made to "evidence considered alongside the consultation" 1) PIP Questionnaire 2) Multiple Documents of Typed Information for PIP2 (undated)

4. No reference (specifically) made to either Consultant‘s Evidence (8 documents), GP Evidence, DWP Doctors Report or the handwritten support letter.

5. The list of conditions appeared to have been truncated and was inaccurate with numerous errors deviating from the information provided.

6. The medication and my explanation as to why I had declined it owing to side effects was entirely omitted despite discussing it in detail on the day.

7. Therapy was inaccurately reported.

8. Social & Occupational history - inaccurate and quite abbreviated, no mention of the lengthy conversation regarding the challenges faced during schooling.

9. Functional History - lacking in detail to that provided.

10. General Appearance & Informal Observations - Failed to notice/report my obvious anxiety or the episode of breathlessness which halted the assessment.

11. Mental State - Inaccurately reported that I was not tired, looked well and was neither distressed nor anxious - quite remarkable!

12. Activity descriptors - Largely accurate (my persistence?) but several with grading reduced below the descriptor indicated in reference to the guide.

13. Stated contradiction of written evidence provided from consultant informing assessor considered that it was ‘inconsistent‘.....trumping a Neurologist!

14. Activity justification - Same poorly presented responses repeated over (cut and paste) to justify each relevant descriptor......quite lamentable!

15. Review Period Justification - Inaccurately reports no specialist involvement, suggests review within 3 years...........Why???? a total waste of money!

General observation - I was particularly surprised that the assessor failed to observe my overgrown garden alongside which they parked, this is the first thing which usually alerts health professionals to my difficulties followed by the general disrepair of my property (as I am unable to perform/afford maintenance) yet neither aspect was apparently worthy of 'informal observation' to support my obvious difficulties. Breath-taking!!!

Conclusions

In respect of the assessment process itself, it is completely lacking of any empathy toward the claimant and their life struggle and in contrast to the line frequently presented by government the concept of ‘support‘ is entirely absent. Worse still, whether at the direction of the assessment providers in the course of their staff training or else by intentional policy emanating from the DWP, the whole process is seemingly approached in a hostile manner with claimants disbelieved and widely disregarded throughout.

Most of us will be all too familiar with medicine's Hippocratic Oath which requires of our Doctors and Consultants that they must 'first do no harm' to us during our treatment. Sadly, if my experience is representative, the DWP appears to have adopted the diametrically opposite approach. I consider that any process supposedly developed to provide support for the disabled and vulnerable should never cause a deterioration in the health and wellbeing of its recipients and, that this PIP process does so should be of considerable concern to society as a whole.

Turning specifically to my case, whilst I doubt that it would be considered that my assessor contravened sufficient aspects of the assessment process to warrant any action or sanction, I feel that the overall quality of their report fell considerably short of that I expected given such a major upheaval is likely to affect my future wellbeing for years to come.......most disappointing.
The following user(s) said Thank You: unBat412Fd, Probation789, sally-jane, drongobackfires, Orangeblossom, john higgins, Whirly, Flora, Archie66, SUE C C

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5 years 7 months ago #216736 by Peter
Replied by Peter on topic DLA to PIP - A Personal Experience
a very well written and precise report Neil....may I ask what point she gave you on the assessment

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5 years 7 months ago #216741 by sally-jane
Replied by sally-jane on topic DLA to PIP - A Personal Experience
Thank you for a full report. Not only does it show the total disregard to any paperwork you provided it also illustrates the poor performance and ability of the assessor, thus proves that some of the assessors are a sham to the profession and highlights the fact that they the assessor, are just interested in toeing the line and grabbing their money and extra money for providing a damming report. Shame on them.

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5 years 7 months ago #216785 by maria
Replied by maria on topic DLA to PIP - A Personal Experience
An excellent and indepth account of your journey. I like you are at the same point in my journey however as only had my assessment 3 days ago i have not yet got a copy of the assessment. I have had my disability from birth some 50 so years ago and like you have lived, managed adapted everyday life to accommodate my degenerative condition. Like you it is a tranfer from DLA to PIP and has been anticipated since the change was mentioned many hears ago.Although i have supported many people with their claims for benefits for my job but when it is you having to complete them it is sole distroying remembering what i used to be able to do but can no longer. Many nights and days of worry and sleeplessness, overthinking and thinking again consumed me as a person as well as my emotional well being.

My GP was not really helpfull saying they didnt know what i could and couldnt do so refused to complete the information printed from benefits and work guide. Instead they wrote a brief letter stating some of the conditions I have. That cost me £10 for the pleasure. I dont have any professionals working with me and dont see any consultants as there is no more they can help me with so finding current professionals to support my appication was impossible.

I went to my assessment with my husband and it took just over 30 mins to complete. To be honest im not sure this is a good or bad thing however i try to reassure myself that it is only my lack of physiacl mobility and personal care needs that needs assessed not my communication etc.

When came out of the assessment i was pleased it was over but anxious again about the outcome.

Just to mention i was asked when i rang up to make the claim about DLA information. I had to the person on the other end to repeat themselves 4 times before i thought i understood what they meant and my understanding is different to your. I though they were asking me if i wanted the information from my original DLA application that was made some 20 years sent to Capita to be included as evidence for my PIP claim to which I said no because it was so out of date. However from reading your report it was to have a copy of the PIP assesment report sent to me.

I also have to find a copy of the information on the benefit and work guide about making notes following the assesment before its too late to remember. I keep going over and o er in my head why they asked this and that were they thinking this or that, arevthey amaking too many assumptions. I have to try and stop myself its driving me mad.

Anyway i await the results and go from there. Thanks for your report we are not alone.

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5 years 7 months ago #216958 by PC Pilot
Replied by PC Pilot on topic DLA to PIP - A Personal Experience
Hi Peter, Pusscatsmum & Maria

Thank you all for the positive reviews!! I am glad you found the summary of my experiences to be helpful.

Peter

The PA4 Consultation Report Form does not indicate 'points' as such just a radio button marking each relevant activity descriptor the assessor considers to best represent the claimant......in her expert opinion I should add!

Even then, to me these appear to have been quite harshly selected as most are one level less than I would have calculated using the excellent summary contained in the guide. I guess this then gives the DWP Decision Maker some room for manoeuvre (not necessarily in the claimant's favour I would think!).

Maybe the thinking is similar to that adopted about smoking by GP's (i.e. that everyone under reports) only in this case the assessors might make arbitrary adjustments if they were to assume claimants over estimate?? If my suspicions hold any merit then it is yet another example of how genuine claimants are penalised for their honesty.

Please note this is only a logical thought on my part. But....knowing what we all know?? Obviously I have no evidence to support this....either way. Don't know what other members experiences suggest, perhaps I should now add paranoia to my long list of ailments?? Lol

Once notified by DWP I will update on the awarded points etc.

Regards

Neil

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5 years 7 months ago #216959 by PC Pilot
Replied by PC Pilot on topic DLA to PIP - A Personal Experience
Hi Maria,

I have just re read your reply

Just to mention i was asked when i rang up to make the claim about DLA information. I had to the person on the other end to repeat themselves 4 times before i thought i understood what they meant and my understanding is different to your. I though they were asking me if i wanted the information from my original DLA application that was made some 20 years sent to Capita to be included as evidence for my PIP claim to which I said no because it was so out of date. However from reading your report it was to have a copy of the PIP assesment report sent to me.


If I recall correctly, the coalition government (Iain Duncan-Smith) decided that where a DLA case had not been reviewed for many years it would be necessary to conduct a face to face review to catch up on the status of such claimants. (I am sure the expert moderators could offer a more accurate explanation here btw).

In my case, having been on Mobility Allowance and then subsequently DLA (after 1992) for a lengthy period I was affected by this trawl in 2012. Initially, I was required to complete a questionnaire and then subsequently the DWP required a face to face home assessment conducted by a DWP appointed doctor.

I had never seen the medical report produced by that doctor (in 2012) however when asked the question as to "whether I wished to receive a copy of the DLA medical" this was the one I asked for.

On receipt it was clear that the medical was a 'functional assessment' along very similar lines to that of PIP and, as his (poorly handwritten) comments were very much supportive of the information I provided on my PIP Questionnaire I elected to use it (even including an 'easy read' typed transcript) as part of my PIP supporting evidence.

To clarify, the PIP Assessor's "Consultation Report Form" (the PA4) was requested separately 1 week hence of my recent assessment and so is NOT linked to my comments

One question I hadn't anticipated however was whether I should like to request any DWP medical's held on file in respect of my DLA. I confirmed that I did indeed wish to receive a copy.

and

NB. Subsequent enquiries with the DWP established that the medical report had in fact been supplied to the assessment provider in line with 'usual practice' so it is best for others to be aware of this. I was however asked if I required a copy and confirmed that I did indeed wish to receive one.

as these referred to the 2012 DLA report I subsequently chose to use as supporting evidence to accompany my PIP questionnaire.

Sorry if this confused you, I was simply attempting to alert members to the (DLA medical) request process and the need to seek a personal copy (i.e. separate to that supplied to the Assessment Provider's) for your own use if you consider it appropriate.

Regards,

Neil

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