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Stumbler

DLA/PIP Reassessment - An MP's View

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Procrastinating
Stumbler

My MP had a letter from a concerned constituent with MS about the forthcoming re-assessments. His response is here :-

 

http://www.timloughton.com/hottopics/circular_campaign_responses/item_2013_01_31__03_39_49.htm

 

And, here's my follow up question :-

 

 

I read with interest your response to the constituent, who was concerned about the
PIP
/
DLA
re-assessment for people with MS.

Primarily, I agree that all disability benefits need to be reassessed, as there does seem to be some questionable situations. An across-the-board reassessment is the only equitable way forward.

But, as an MS sufferer myself, I have heard horror stories of ESA re-assessments, where a 12 month decision
on
MS sufferers has been made.
Now, MS is incurable and, with the present budgetary deficit, will stay that way for some considerable time.

 

So, if ATOS believe MS will improve, or be cured in 12 months, what hope do we have for a reasonable re-assessment for
PIP
awards?

 

It's good to hear that assessors "will be required to have a broad training in disability analysis as well as access to information
on
specific impairments and conditions". I would suggest that this an absolute minimum requirement and appears to have been lacking in some ESA re-assessments. Having the right people in the right places in private contracts is always a challenge. Look at G4S and the Olympics!

 

You should be aware that stress is a major contributory factor in the progression of MS. This impending
DLA
/
PIP
situation, following
on
from the ESA re-assessments, is already negatively affecting MS sufferers, making their lives even more challenging.

 

I'd really like some categoric assurances that myself and my fellow MS sufferers will be dealt with professionally, courteously and compassionately. We have enough
on
our plates already!

 

I can't wait for the reply.

 

:moonieman:

  • Like 12

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Nick

Dear Mr Politician,

 

Your written response appears as clear as the Obfuscation found in the implementation of this legislation. If I hear the expression, 'Let me make this clear' coming from any more MP's I will be forced to point out that we are all being conned by commercial companies, whose primary purpose is simply profit and who have NO interest in social welfare. If you STILL don't understand this, ask anybody with serious health problems who has been through the process of ESA and they will ALL tell you the same story.

 

Yours Truly (Somebody removed from ESA without explanation despite having 'scored' 21 point and living with a progressive incurable disease)

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Just another Warrior...........

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Tania B

I emailed my MP about the PIP and received a similar sort of written reply.This was following signing the letter to Esther McVey MP, the Minister for Disabled People about PIP.


Edited by Tania B

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Sleepy
Scully

I too, a while ago now, when this was first tabled emailed my MP.

 

I too received a similar response, which arrived in letter form, in a very grand envelope proclaiming that the letter was indeed form 'The Houses of Parliament'......when it arrived, I looked at the envelope and thought I'd been awarded an MBE ........but no, it was a letter in similar terms as the above. Basically waffles on, but in reality says nothing at all.

 

Scully

x

  • Like 3

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Heste

Me too, my letter to my MP was forwarded to Lord Freud who forwarded it to Maria Miller (Minister for 'Disabling People' at the time). I got what was probably the same "reassurance" letter.

 

My biggest problem with all of these politicians is the use of the phrase "those with the greatest need" or "the most severely disabled". On any scale of need there will be people with real needs at either end. The impression I get is that the Government have briefed MPs to use these phases because there are going to be people with real needs who are going to lose their support. But rest assured, those with the greatest need and the most severely disabled will be OK.

 

Regards,

 

John :cowboy:

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Bigbird

Despite the weasel words from MPs we all know it's about saving money not giving those who deserve it more. If that was the case it would probably cost more and there is no chance of that happening. And do we really believe that we will be able to discuss in detail how MS disables us? Of course not. We know from reports it's all about ticking boxes.

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Life's too short to be subtle

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Procrastinating
Stumbler

I thought I would update this as I didn't even get a reply!

 

I'm not one to be ignored, so I chased it today and got a response from one of the MP's "helpers" :-

 

"Thank you very much for emailing xxxxxxxxxxxxxxxxx about PIP re-assessment for people with MS. He passed your message onto me and I am very sorry for the delay in responding. I believe that the same paragraph which you reference in your email gives you the required assurances that MS sufferers will be dealt with professionally, courteously and compassionately.

 

‘In terms of guidance for assessors, I understand health professionals conducting the assessments will be required to have a broad training in disability analysis as well as access to information on specific impairments and conditions. Moreover, I can assure you that both of the organisations providing the assessment will have to conform to a rigorous set of quality standards regarding staff recruitment and training, which the Department of Health will be closely monitoring.’"

 

Which doesn't really address my concerns, so I have responded as follows :-

 

 

"Without wishing to labour the point, if MS sufferers were to be dealt with “professionally, courteously and professionally” then the fact that MS is a degenerative condition without cure would be taken into account.

 

Surely, a health professional’s confirmation of the diagnosis would suffice as a reassessment?

 

I am more concerned about the stress that would be involved in any drawn-out process, which will have a detrimental effect on the sufferers. We don’t need to be pawns in this game, where there is an overriding mandate to reduce costs!

 

For my part, I have deteriorated since I was given my DLA award. I haven’t considered asking to be reassessed for an increase, as I don’t need the stress.

 

I know that this future process is already causing a great deal of stress amongst my fellow suffers. This will only lead to a greater call on the NHS services, which we know are already under pressure.

 

By all means, review, re-assess, change the goal posts, where a real cost saving is possible. But please try and recognise a false economy, when it’s presented in front of you."

 

I can't wait for the next response.

 

:moonieman:

  • Like 4

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Bigbird

Impressive. Straight to the point. I'd expect no less. Go for it!

x

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Life's too short to be subtle

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Sleepy
Scully

Nice reply, well done John

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Procrastinating
Stumbler

We can but try...........

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Procrastinating
Stumbler

Oh well, a quicker response this time :-

 

 

"Thank you for your response.

 

There is no automatic entitlement to Personal Independence Payment for people with certain conditions, entitlement for the new benefit will be based on how someone’s conditions or disabilities affect them. PIP will treat everyone as an individual and the benefit will go to those individuals whose impairments impact most on their ability to participate in society. However, exceptions will be made for claimants who are terminally ill and who are not expected to live for more than six months.

 

The new PIP assessment will be a simpler than DLA as it is focused more on face to face discussions about individual needs and not complicated form filling. The Government realises that it will need to adapt its approach to delivering PIP to address specific needs of certain people and has worked hard with DLA claimants and organisations to understand the preferences and health issues of disabled people. The information from these sessions and other work with disabled people is being used to decide how PIP is delivered, including how people who need additional support through the claim process are identified.

 

The Government will continue to communicate with disabled people with their organisations to ensure that the delivery process of PIP is right.

DLA has been in place for almost 20 years, largely unchanged and no longer properly takes into account the needs of disabled people today and does not have some of the checks that are a key part of other state benefits.

These changes will ensure that Personal Independence Payment will remain affordable in the future."

 

Anybody want to help me pull this apart?

 

How about :-

"ability to participate in Society" by what measurement, otherwise completely subjective;

"assessment....focused more on face to face discussions"! Where? Options for home visit?;

"The Government...has worked hard with DLA claimant and organisations to understand...!" Any examples guys?

 

I'm happy to push these nobs, so any input will be appreciated.

 

:moonieman:


Edited by Stumbler
  • Like 1

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Sleepy
Scully

Hello.

 

1.

"and the benefit will go to those individuals whose impairments impact most on their ability to participate in society"

?? Participate in society? What about participation within the home? ie. cleaners, help with care, ?

 

2.

"including how people who need additional support through the claim process are identified."

? What is this additional support please, how is this defined ?

 

3.

The Government will continue to communicate with disabled people with their organisations to ensure that the delivery process of PIP is right.

? I assume this means the normal 'complicated forms being sent out from time to time?

 

Regarding the 'face to face' interviews....when I was summoned for me first assessment, I was I asked to go to a centre in Brighton, some 30 miles away, and was told there was absolutely no parking, and I would have to go via public transport....the helpfully sent me a route. Which involved a 20 minute walk to the first bus stop....then, just under two hours changing buses twice to get there.......and then a reverse route for another two hours....So, my question is, what options are available to attend these interviews?

 

I would also like to know who and which Disability organisations they have been working with too?

 

Thanks John, your pursuit of this subject is much appreciated

 

Scully

x


Edited by Scully

They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Bigbird

Well asked Scully. My DLA pays for my motability car and a cleaner two hours a week.

 

When I went for my assessment for ESA it was the same. No parking on site which is in the middle of a roundabout, public transport route sent. I parked the car about 1/2 hours walk away. Was absolutely exhausted by the time I got there. Was told that I should have asked them to reserve a space, it didnt say this in the letter. It said no parking was available. I'm due for a reassessment so I've told them I have to have a parking space.

 

We have to accept that this government don't care. They haven't got a clue. They wanted to bask in the glories of the Paralympics but the s**t will really hit the fan if a gold medallist looses a benefit. The media will have a field day. Roll on that day and it may be soon.

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Life's too short to be subtle

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Procrastinating
Stumbler

OK, I'm happy to push this issue. Here is my latest e-mail, to which I attached our "Description of Symptoms" from the Survivors Guide:-

 

"I am very vocal on a couple of MS self-help internet forums, so I am aware of the general feeling on this topic. So, I regret to advise you that the majority of MS sufferers live in the real world, where life is already becoming a struggle, before you bring a debilitating condition into the equation.

 

Can I take issue on a few points in your response :-

 

the benefit will go to those individuals whose impairments impact most
on
their ability to participate in society”
, which means what exactly? The majority of our additional cost is down to our overwhelming problem of fatigue and lack of mobility, in paying for care, cleaning, decorating and generally the little chores that cause no problem to normal people. MS can be an isolating condition, as leaving the comfort of your abode presents many logistical issues. So, the meaning of “participate in society” is an interesting exp
ression that may benefit from a greater definition.

 

“The new
PIP
assessment will be a simpler than
DLA
as it is focused more
on
face to face discussions”
. I am only too aware of horror stories of these “face-to-face” discussions. To date, assessments have invited sufferers to attend interviews at the most difficult of locations, involving logistical challenges, sometimes over a five hour return trip. So, will these face-to-face meetings consider the transport difficulties faced by MS sufferers?

 

“…work with disabled people is being used to decide how
PIP
is delivered, including how people who need additional support through the claim process are identified.”
. Can you provide some detail about this additional support?

 

“and has worked hard with
DLA
claimants and organisations to understand the preferences and health issues”
. Is there any additional details of these claimants and organisations, their concerns and any action being considered as a result.

 

These issues are already creating stress within the MS community, even though the assessments have been rescheduled into the near future. I have heard of sufferers, who will not apply to be reassessed for PIP as they just don’t want the stress associated with this assessment. Perhaps this is considered a successful outcome!

 

As a small section of the population, MS sufferers often receive comments such as, “but you look so well”. This condition isn’t fully understood, until you receive a diagnosis, then your entire world changes. We are now being vilified by the general public as malingerers and scroungers.

 

I’m attaching a document that explains the array of symptoms that we have to endure, with an everyday analogy. So, speaking on behalf of many sufferers, I ask you to look at MS and how this PIP Assessment can be handled in a truly compassionate way, that will not cause any further suffering."

 

Let's see what happens next.....

 

:moonieman:

  • Like 5

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Bigbird

What a star you are. Keep at it.

I've been in touch with my MP about it and received a similar letter of platitudes. They have no idea. It's not about helping us its about saving money and their claim that, everyone who needs it will get it, is risible. We know that simply not true.

 

xx


Life's too short to be subtle

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Nick

Thanks from me as well, John,

I am a bit sorry you haven't had any input from me. I've been a bit tied up recently but am very interested and think all the points raised do indeed need better explanation.

 

One potentially powerful tool to improve our PIP situation is understanding contract formats that these private sector companies all work with. Finer points here can make the difference between good control of (public) funds or bad management and bad results. (Its up to politicians and the civil service to get that right)

It seems to me that the replies you are presently getting are simply answers straight out of the book of 'stated aims' (as per contract) rather than what is happening in real life(Results). To score political points you need your politician to be 'concerned' over the public view that too much is being wasted in administration and the fact that the ONLY motive for private companies is profit which is an area where the public demand value for that money. Hitting on specific aspects and lending weight from experience, can be a good way to go.

This is how you have replied, and something we all need to hone to a better, sharper edge.

 

When I went through the ESA process back in 2009 I was astonished that having done all I was asked of, having an expensive assessment , been assessed (accurately as it happens) with all the requisite points of entitlement and then being passed to the decision maker who then correctly placed me 'on ESA' Only to discover that I did not fit yet another requirement and so received nothing. The point is that this must have cost a fortune and was completely avoidable. Quite simply the winner was the private company, the incompetence was down to contract detail and lack of joined up thinking by the DWP.

 

Nick


Edited by Nick
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Just another Warrior...........

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Procrastinating
Stumbler

I'm not after thanks. I just have too much time on my hands and I'm training to be Victor Meldrew! :lol:

 

But, I also do not fancy being used as a pawn in this Government's game of draughts (yes, I did choose my words correctly!). :what:

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Procrastinating
Stumbler

Well, not a lot happened next, so I chased for a response. This is what I received :-

 

 

"Thank you for your email and I am sorry for the delay in responding. I was well aware that you were posting my responses
on
a blog. However, I am happy to forward your email onto the department to address your further queries?"

 

And my response :-

 

"Thanks for your response and I would like my e-mail forwarded to get a formal response to the further queries raised.

 

Yes, I have quite a few interested fellow sufferers that have an active interest in our ongoing correspondence. However, this is not just some weblog! It is a self-help forum for MS sufferers, which allows MS sufferers to support other MS sufferers, with advice, understanding and emotional support. It fulfils a much appreciated function, which supplements the services offered by our over-stretched NHS.

 

When the MS community is threatened, and we still see it as a threat, with a reassessment of our conditions against the background of austerity measures, then we will group together for support. We have no wish to see our difficult personal situations further deteriorated through the stress caused by a political strategy, with an unclear agenda.

 

This is not a case of numbers. MS sufferers are people living a restricted life, with an incurable, progressive condition. We make do and try to manage our condition as best we can. We will tolerate a fair assessment by knowledgeable assessors, who understand the everyday problems we face. So, we’re just trying to fully understand the “terms of engagement”, so that we can manage this unwelcome, but necessary inconvenience without our health taking a further detrimental and irreversible relapse. "

 

 

So, another wait.........

 

:moonieman:

  • Like 3

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Sleepy
Scully

Well put matey !

 

How did they know you were posting on a blog / forum? Big Brother watching?

 

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Bigbird

I wondered that Scully

That was a bit worrying

 

B x


Life's too short to be subtle

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Nick

John A very good reply! This is exactly how we in the MS community feel , and should any ministers be reading, I can say with certainty that were it not for organisations like the MS trust helping us support this incredible self help forum (which is indeed very far from just some web-blog) we would feel even more isolated and vulnerable in the face of constant political change with regard to welfare reform, which does little if anything to help support people with long term conditions such as MS.

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Just another Warrior...........

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Diane Susan

Hello

I have just completed my form from ATOS and I cannot begin to explain how difficult it was for me I was in tears the whole time my husband was completing the form. I was diagnosed with SPMS 12 years ago after having MS for 20+ years.

My problem is that apart from routine appointments at my GPs ( rarely able to see same doctor consistently ) and apart from my repeat meds amitriptyline baclofen zopiclone and occasional steroids I just get on with it. I do have outward signs such as needing my wheelchair 90% of the time, muscle spasms jerks its the silent inward ones that I can't show, the debilitating fatigue, the constant knocking I'm my head the migraines that last for days the dull aching pains in my arms and legs. I am sure the stress have caused a serious downward spiral I am so depressed and just feel like giving up but that would seriously affect my life and that of my Husbands. Genuine people should not be treated this way.

 

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cazza

Hi John, and everybody, wow you're words and shear writeability(you know what i mean) are amazing, you should be swapping places with those **** in parliament and showing them how to do it correctly. As for these letters or replies some of us get back from our mp. Whilst attending a "my therapy " group at the hospital for people with ms,5 of the group,me included, had written to our mp on this topic and all got a reply.As we layed out our replies for all to see,apart from our names and adresses, they were identical standard letters,obviously churned out as standard practise. So much for individual reassurance, thought and help!!!

The passion in everyones words have really touched me and although i am now holding back the tears,just, i am so proud to be a part of this great community, we are ALL AMAZING PEOPLE.

 

Cazza x

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*A Christmas Carole*

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Christina

You can bet those replies are written by parliamentary assistants too!

 

Good for you John, and thank you.

 

Chris x

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Not waiting for the storm to pass, but learning to dance in the rain ....

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Procrastinating
Stumbler

So, I don't get a response from my MP to my e-mail from 28th March! Do you think this follow up might galvanise some reaction:-

 

I am somewhat disappointed that a further month has passed since my e-mail below.

 

I’m sure an acknowledgement would be the least that I would have expected. Or, am I being naïve in that this is the way that our elected Members of Parliament respond to their constituents?

 

I'll keep you posted guys.

 

:moonieman:

  • Like 1

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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