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Nick

DLA to PIP

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Nick

First of all, Well Done Marina for completing the (complicated?) upgrade to the forum.

 

Well, this morning's post brought the DWP letter I have been expecting for about two years! Yep, you've got it, would I like to apply for PIP as the DLA is ending. I feel like I might be the last person on the planet to get the letter, but  probably not!

 

Having sorted out the various requirements needed to make the initial call, and having referred to the members-only guides on the Benefits&Work website, I made the initial call. 

 

Not too many problems here, they did have to redirect me to the correct phone number, which involved writing down the numbers from the automated calls, that's difficult for me as my writing hand doesn't work very well; however, at least those automated calls repeated the numbers and were in loops, so I got the number third time around. 

 

The (PIP1) call lasted about 10 minutes and was straightforward. You do need to have all those details at hand before the call, as listed in the initial letter.

 

Now waiting for the joyful job of receiving and filling in PIP2... the big one.

 

Will keep you posted

 

Nick 

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Scully

Oh- oh , well done Nick for having everything ready.

 

Not received  mine yet......I wonder if they wait until retirement age ?

 

Am expecting mine to clatter through the letterbox any day....

 

Fingers firmly crossed that the 'book' of application isn’t too daunting, but I feel it may be as bad, if not worse than the DLA forms....I have lost the copy of my original one unfortunately 

 

Scully 

xx

 


Edited by Scully

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Marina

Yikes, Nick, good luck with the change-over! And you too, Scully! :goodluck:

 

To anybody else reading this, the guides on the Benefits and Work site are well worth the annual membership fee. Some of them might be pages and pages long, but they're stuffed full of tips.

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Nick

Thanks Guys, I'm not looking forward to the process.  My neurologist recently retired so I have only met my new chap once. As luck would have it a similar set of circumstances has occurred with My MS nurse, who has also recently been changed.  Good news with wheelchair services, where I have a new assessment next week. I'm a part time wheelchair user but have difficulty propelling a manual chair and tend to rely on my scooter in outdoor situations, but don't like to use it around shops. 

Finding a descriptor that fits my 'mobility' criteria is very difficult! I don't know how to describe myself, let alone explain it to somebody else!! 

 

Never mind, nice weather here at home and I'm off to my back garden to take some sun

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Nick

Yesterday I had an appointment to see Wheelchair services..........accidental good timing?  

Anyway, I still find all this a bit difficult, ten years ago I had my first wheelchair assessment , after a stern warning from my MS Nurse, who said ' I know I can trust you Nick, NOT to put yourself permanently in a chair'  This was true, I needed some kind of mobility for the times when I 'ran out of braincells' and simply could not walk.  Of course I still walk, depending on conditions, yet still use both a scooter and a wheelchair, hence my feeling of it all being a bit 'complicated'  

Anyway yesterday I decided that two sticks would suffice and Kay & I walked into the wheelchair place for the appointment with Kay pushing the chair, using it to carry her handbag.  So far so good.

The practitioner who saw us was very good but then started telling me all about MS............oh dear, when she enthusiastically got to a bit about 'steep decline'  I had to interject with a, 'Now you tell me!' , which did bring her up short, with me then going on to say 'Don't worry, I too know a little about the subject.  

My problem with wheelchairs these days for me, is that using a self propelled chair has become increasingly difficult.  My right side has become very weak, so keeping a straight course with the chair is difficult, plus manual chairs are difficult anyway.  Did I want a power chair? asked the lady.  No I need something we can chuck in the back of the car with ease and in any event my handy little scooter covers some of the need. Where the difficult lies is using a scooter in certain situations, smaller shops for example, are somewhere that I find are pretty unacceptable places  for power scooters  

For some time I have been very interested in something called E-Motion wheels (I think I bored some of you on here with that) These are German made wheels which are very similar to standard wheelchair wheels, but with a motor&battery built into the centre hub. Light weight with Li-ion power these wheels react to the way you push them, so you still use the wheels in the same way as a manual chair, but a light push on the rims gives a more powerful push to the chair. They are brilliant and I have tried them.  You rarely see them over here for good reason, cost.

Getting back to my appointment, 'Could I possibly get a slightly better chair than my current Action 2000 through Wheelchair services, and then for us to buy the add on E-Motion wheels'?  This was all new stuff to our expert who confessed she did not know the answer.  Then we got the better news that 'Plan A' is for her to arrange another appointment to meet a chair supplier, with a more suitable chair for me and that between them they would find out about the viability of my plan.

You can go down a voucher route with wheelchairs, rather than fully utilising wheelchair services, possibly not such a good idea with MS as you don't know what the future may bring. So I intend to stick with them, you never know when a 'steep decline' might see your needs change. 

The relevance of all this to filling in PIP2  is a little beyond my comprehenion when it comes to the mobility section, can I walk more than 20Mts? I sure did walking into wheelchair services! Nobody (Including the DWP is putting me permanently into a chair) Yet can I do that repeatedly ?  The answer to that is sometimes and sometimes DEFINITLY NOT, sometimes I need all kinds of things to keep me mobile.


Edited by Nick
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Scully

Sounds like a good visit Nick..

what on Earth do you put on the PIP form about mobility then? I know they say fill it out on worst day.

i think a buddy of mine., Put 'no' to mobility questions, but then also put, 'it varies'...coz it does of course.

 

My buddy sent form in, and they decided to do a home visit, she didn’t ask for one, they just said they were coming. Anyway she got the higher mobility rate for PIP. She uses a scooter at times too.

 

Good  luck with it.

 

scully 

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Nick

It's a tricky one. I have no desire to fabricate an 'excuse' for my condition (way past that stage) Yet would hazard a guess that decision making on PIP in the first instant depends on the available evidence.  I've been assessed formally several times on the EDSS scale, coming out at a 6.0 yet even this is a crude tool (see the video posted by Marina) I would welcome a home visit.  Anyway so far I'm not too stressed out about things....can't do much anyway in this heat..........and that's me on the coast with a sea breeze coming in .....hope you are all coping wherever you may be

 

Nick 

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Nick

OK Folks, I have now filled in the PIP form.  I used the 'Benefits & Work' members guide which was essential.  A few thoughts on it all.

 

The form is concise which I felt was better than the older type of DWP forms. It also came with an 'instruction book' which was also OK. 

There is no-way that the form can be comprehended properly without reference to some kind of assistance.  The terms used, while being concise and well laid out, have to be understood in their legal sense.  THIS IS NOT CLEAR!

It has taken me all week to fill it in, and I used the method of typing out the answers on the computer and then getting my wording correct, before actually putting it into the actual form.  This way you can take your time and study your wording, making sure you have the relevant points, in the right places. Putting in all your explanatory points clearly across in the spaces provided after each question is very important.

 

I made an appointment to see my MS Nurse to explain that the application for PIP was being submitted.  

With the application I have included all the relevant documents that I can lay my hands on.  I have been lucky in that respect that I have two or three formal references as to my condition.  You don't really have a lot of time to fill and return these forms so anything that clearly shows the nature of your disability should be included ( not simply appointment dates) 

 

Oh Boy what a job!!!! I can manage it now as I know how to divide my time and energy in that special way.....BUT there is no way that I could of handled this when I was first diagnosed....which after all is the time when a lot of these forms get filled in, that is at a crisis point.  

 

On the positive side, I do feel that in the past there must have been a degree of misuse of the old DLA, and it can only be a good thing if they can make a better assessment......That of course remains to be seen

 

I await the outcome and will let you know what happened next!!

 

 

 

 

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Scully

Well done Nick,

Sounds like a real performance to do.

I still await my PIP letter arriving, with more than a little trepidation...I'm sure that that brown envelope will clatter through the letterbox soon.

Thanks for sharing your experience with it, it will be useful.

fingers firmly crossed that your outcome will be positive.

Scully 

 

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Gosport Nancy

I have just sent in my part one and asked that my DLA paperwork could be used as evidence as that was an option.

 

This is my second time of putting in a claim as last time the DWP sent someone for the assessment who had no idea how to do a medical examination so I ended up with 2 points for mobility and none for care.

 

When I was seen by a GP for my DLA he noted loss of power in my right leg which the PIP assessor missed and for some reason the assessor wrote that I walked at normal speed and with a normal gait, when I haven't done either for at least 30 years.

 

I'm hoping I get a better qualified assessor this time and I hope you get the right person too

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Nick

It's really difficult I know.  I subscribe to the Benefits&Work people   https://www.benefitsandwork.co.uk  their members only guides are probably the best information obtainable.   The whole process is evidence based which means that any written documentation you have from specialists etc. should always be kept as reference.  I had done this to a degree but am certainly not looking forward to assesement!!  

Like a lot of folk my GP is not really somebody I have much contact with and he is not somebody with much knowledge of MS.  This is not to downplay the important role that GP's have. I am also very respectful of the fact that GP's are very well qualified.  

The time allowed between the PIP claim being applied for and it being submitted is very short. Ostensibly this should be a month, but time lost in postage brings this down to three weeks. That is not a lot of time to submitted all the material! 

Anyway I hope it goes well fro you

 

Nick

 

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Gosport Nancy

Well.. I just did the PIP self test from Benefits and work

 

Daily Living 26 points (Higher rate)

Mobility 20 points (Also Higher Rate)

 

Actual points for PIP claim last year

 

Daily Living (zero points)

Mobility (2 points)

 

So no award whatsoever

 

DLA care component middle rate

DLA mobility component  higher rate  This was what I was awarded 3 years ago before the cardiac arrest and complications

 

I think this is down to lack of current evidence as my GP is unhelpful and I haven't seen any specialists and so on in at least 20 years


Edited by Gosport Nancy

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Nick

 Just to update people,

 

It's just coming up to a month now, since I posted my completed PIP form to the DWP.  Still no word, brown envelope or phone call from the decision makers.   I've read that claims are taking between four and eight weeks, so will let folks know just how long mine takes.  I spoke to my physiotherapist last week about the claim and she said that they are rarely contacted about PIP!  Extraordinary, in my case they are the very professionals who know me best.  

Anyway I am way passed the stressed out phase,  I've done my bit filling in all the forms and submitting 'evidence'  so am just happy to wait. It will of corse be another matter when they get it all wrong.  So I'm saving my energy for a possible battle yet to come 

 

Keep cool everyone

 

Nick

 

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Gosport Nancy

I have the part two of this form sat waiting for me to do something with it.

 

The first question has already floored me as the last professional I spoke to about how my disability affects me was more than 10 years ago. He was a GP sent out to me by the DWP and I have no idea how to make medical professionals appear out of thin air.


Edited by Gosport Nancy
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Nick

Nancy,

 

That problem is not uncommon.  I would suggest that a start would be to go back to your current GP and explain where your problems lie.  The GP is often the only person who can easily pass you on to see a specialist.   I know this is often difficult and GP's are often very overworked and can be unsympathetic.  Clearly explaining your difficulties can sometimes be made easier if you keep a diary of your symptoms. 

Don't look back at past events too much. At the end of the day we all need to make the most of our health, whatever our restrictions.  

Always keep any paperwork and dates for when you do see medical professionals.  The same is especially true of DWP records.  When seeing a DWP medical person, you are entitled to have a copy of the report, something called a 'subject access request'   You are also able (in theory) to access past NHS medical reports on request, for which I believe there is a small charge.  

It does take a lot of effort I know, but at the end of the day it is only fair that the DWP has a clear idea of your condition. 

I'm not alone when it comes to these problems.  I come under two different local NHS Authorities.  The GP's practice is ( as always) a private company. My MS Nurses, Physiotherapist and Wheelchair services are now a 'CIC Not for profit company' working on behalf of the NHS, and my Neurologist comes under a different health authority to my GP.  None of these different organisations have direct computer access to my different medical records, which are kept separate to each other by the different organisations.  This is one of the big problems for the modern concept of breaking up the old NHS into separate organisations.  

I know this is not much help but you have to start somewhere. The most important aspect has nothing to do with benefits.  Understanding your own health and having a better grasp of how it effects you and what methods you can use to improve your situation, should be your primary goal. 

Lots of MS sufferers have learnt that they themselves are the experts on their own condition,  getting to that point is really important and something that is hard to achieve but possible.

 

Nick 

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Nick

An update on my PIP application,

 

Have now received my 'invitation' to attend assessment.  It will exactly six weeks since I submitted the forms, until this appointment date.   I was hoping that I would not have to go through this assesment process and it has raised my stress levels no end as you all understand.  On a more positive note the place of assessment is only a couple of miles away which is not at all what I was expecting.  One thing to note was that the letter came on Saturday, with an appointment day this coming Wednesday. A very short lead time but luckily I won't need to change it. These kinds of demands could be very difficult, especially where arrangements for support are needed.  Appointment dates can be rearranged apparently. 

 

Anyway folks, wish me luck and I will keep you posted.

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Gosport Nancy
1 hour ago, Nick said:

 The GP is often the only person who can easily pass you on to see a specialist.

A cardiologist wrote to my GP 25th July last year asking to see me as a matter of urgency. I phoned their department and no appointment has been made for me and I can't self refer.

 

I have completed most of the form now so it will be posted off some time soon. I have asked them to use my DLA paperwork as that was a tick box option on part 2.

 

I have already seen a neurologist but he put all my neurological type symptoms down to anxiety. With something like that written in my records I am not surprised I now don't get listened to. 

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Nick

Just had my assessment for PIP.

How I approached it.  Well an old saying is, 'When in Rome, do as the Romans', or to put it another way,'Go with the flow'  Understanding the nature of these assessments is pretty important and I  highly recommend the use of the 'Benefits&Work people' . Well worth the small annual subscription. 

There is no use in getting worked up over the way the system works, it is very important to put all that aside and try and make the most of presenting your problems fully at the assessment. For that you need knowledge and a good understanding of the system, which would be unclear without help. 

I took Kay with me and all the previously gathered evidence and medical history.  The process followed that given in the guide that comes with PIP letter. 

This really annoyingly followed the original questionnaire form.  We were given plenty of opportunity to attempt to explain my particular problems and the difficulties this entailed.  How much of this the assessor was able to be enter into the computer system was unclear, but all the time him seemed to be typing in details.  The last part was a simple examination of my physical problems (apparently NOT a medical)  This was very brief ', but clearly demonstrated my difficulties.  

In all the process took just over an hour. 

A few observations:

While the assesment centre was close to the middle of our town, you could not have chosen a more difficult location! Not on any bus route, at the end of an unmade road, part of a very scruffy industrial site and difficult to find!  We had no problem because we know the town well and have a car to get there. Lots of others would find it very difficult.

The place itself was fine and the staff were also very helpful, helping me and kay with the wheelchair. 

I have no idea how I did and look forward to the outcome.........about a month' I understand.

A last word about it. When I get the 'result' I shall request a copy of the assessor's report.  This is very useful when it comes to any future dealings with the DWP. 

What do I think about it all? 

A terrible waste of government money and degrading towards people with disabilities. I don't see any need for me to have to explain myself in this way when ALL the medical history is readily available from my specialists, none of which seem to have been contacted. 

BUT remember, if you fall in a river it is often better to go with the flow until you understand your situation. Knowing when to strike out for the shore and knowing when NOT to fight the river is what stops you drowning. 


Edited by Nick
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Shirl

Thank you, Nick. I have my face-to-face tomorrow. Your "go with the flow" advice is very helpful. We are in touch with our MP with regard the whole (Lifetime-award-no-longer)DLA ends: invited to apply for PIP and had no intention of fighting the system during the assessment itself.

One question with regard your having taking originals of your medical reports. It states in the booklet that there is no need to take any evidence already submitted with the application form. Or words to that effect - I've reached saturation point so I'm not pre-exam cramming today. So did you or your wife need to refer to these documents at all?

Another question about the examiner's computer input - were you offered the opportunity to see this? I'm sure previously mentioned booklet stated this would happen.

I hope you are now suitably chilled after your experience and I hope the outcome will be correct. For us both!

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Nick

Hi Shirl,

 

We took everything, but were asked for none of the documents at the assessment.  One of the most useful things I think I did beforehand was to read the PIP guides from the Benefits&Work website.   Understanding that the procedure is computer based and that the 'examiner' is limited in what he asks  (It is not a medical)  So when replying to questions, always try and get the 'but' part in, for example 'Can you use the toilet OK'. The answer might be 'Yes, BUT I need to have a frame in order to get up. Or 'How far can you walk'. Might be answered by, 'Around 50 Mt's BUT I can't do this REPEATEDLY, and it takes a long time'.   

I tried to explain all my differing problems as best I could.  The end bit was a very brief look at my physical problems, asked to stand, asked to move limbs.  

Anyway Good Luck, stay as steady as you can and try not to get too stressed.  The problem is the system and gnashing your teeth and wailing will be counter productive.  I will let people know how I got on when I get the outcome.

 

Nick 


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Shirl

Thank you, Nick. The most useful result of coming back here is remembering I am not alone. It is too late now, I feel, to look up the Benefits & Work link. I've read enough now to feel I can relay my condition through honest and full replies. I won't rush. I will sleep tonight (ha!) and tomorrow it will all be over until the brown envelope arrives.

No more political comment now. But I have many available :rant:. I will let you know how it goes. Thank you again.

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Shirl

I am through the face-to-face, and shattered. Feet up, TV fest about to happen.

 

The building is in the city centre, metered parking right outside the door, free to Blue Badge bearers.

 

Inside the building was less positive. The 'reception' area doubled as the waiting room with insufficient space for either, let alone both. It occurred to me that some of the undoubted profits from providing an 'independent' service could help to freshen the decor. But I wasn't there to critique the environment, or the private v public conundrum.

 

Half an hour beyond my appointment time, my practitioner, Alice Not, announced herself to me, from a doorway right beside my wheelchair. So no lift ride needed. In we went, hubby and I.

 

Alice described the point of the meeting: I had submitted an informative PIP2 application with plenty of supporting evidence. It was necessary to tighten a few areas. Alice was au fait with MS symptoms and challenges. She asked her questions, allowing me plenty of time to reply. She typed in front of me and read aloud each section. 

 

There were a couple of exercises and tests to assess certain symptoms - short term memory loss, hand-eye coordination and strength/weakness. Nothing unfamiliar. I was not asked to walk or to get up on the couch.

 

"Alice Not" demonstrated throughout the process how much she understood, and she acted with professional compassion. Of course, she was not able to predict the outcome. I thanked her for 'making the whole process less daunting than feared'.

 

It's a first-one-to-the-letterbox game now. That'll be hubby, unless he's out at the time of delivery. In which case, I will quake all over, feel nauseous, and possibly  wait until he gets home before opening the envelope.

 

It is worse than getting my teaching qualification in 1976!

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Nick

Well done Shirley,

 

The chap I had clearly had no understanding of MS, but was pleasant enough. He also did not read out the sections.  One thing I was going to say is that when you do get the 'result'  ask the DWP for a copy of the report, which you are entitled too. 

 Nick 

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WobblyGreg

Nick have had a read through your experiences. 

Very similar to mine high rate DLA lifetime award then changed it to PIP.

 

I never kept much paperwork after I was awarded indefinite award so knew I would get interview .

I had no old Neuro reports to send or Dr reports as basically I just don't see either. 

 

Have belonged and bought literature from Benefits and Work so thought I would get through interview okay.

 

I thought my interview went okay the assessor was former nurse of Parkinson's patients seemed friendly enough I was suspicious though and she even said twice " I'm not trying to trick you. "

 

I know and have read in several articles about bonuses being paid to get people off PIP  and indeed I had everything stopped care and mobility so I'll be appealing and have kept MP updated but I'll lose car so means be looking to get another car and wife will have to work more hours.

 

I'm still bit in shock although I was half expecting result as assessor had no clue about Ms And was more concerned with stuff I could do more stress more worry but only yo be expected in this country. 

 

I was Greg on this thread


Edited by WobblyGreg
To add explanation as to who I was on link

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Nick

Hello Greg, Nice to see your post,

 

Sorry to hear your news.  There is some good advice on what to do on the Benefit&Work site.   The one thing we all know is that MS hates stress! Not exactly the time when you need to be pro-active with regard to an appeals process!  I'm also dreading the decision letter arriving at mine!  

It would appear that the PIP process is evidence based, depending mainly on the claimant providing that evidence.  I know that in my case, so far, the DWP has not contacted any of my medical support, and would appear to be relying soley on evidence I supply for the assessment process. 

With a condition such as MS, where a claimant has been diagnosed some time ago, this evidence may be hard to obtain. From what I gather this seems to be one of the major flaws in the process. 

I had an appointment earlier this week with my Neurologist and I confirmed with him that he had had no contact with the DWP regarding my medical records. He also says he will support me with any appeals process.

I can only suggest that you start by contacting your MS Nurse, if you don't know who that is then the MS Trust website have a good map showing you where these services are, and their contact details.  The NHS provides a 'pathways' system for long term conditions and with a diagnosis of MS you are entitled to continuing support. A lot of people do lose track of this but you shouldn't need a referral to be able to access that provision. 

This would be a start. Getting a new appointment with the neurologist would be my next move.  My own GP is overworked, like many, and I don't have much contact with him, however getting a letter to support your claim, from him/her would also be useful. 

It's difficult I know but do all you can and keep all records.   People don't realise that the law changed with regard to the specifications of claiming these disability benefits and like it or not the criteria has changed.  How one is supposed to be able to assess such a complex changing condition like MS with this method is beyond me! That however is how it is, BUT that does not mean you should fight for your rights. A letter to your MP is never a bad idea, but I would concentrate on getting the best decision out of the DWP first, by using the appeals process and ensuring they have as much info about your condition as possible.

 

Nick.


Edited by Nick

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