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MS And Parkinson's Sufferers Told: 'Get To Work'


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Well said Estellyn. Can't rep you before spreading some more around.

 

Some of us in the support group could in theory work. But on our own terms, which to many employers would be unreasonable. And some of the adjustments we need are unreasonable. I used to volunteer in a charity shop. I couldn't do that now - it's becoming harder and harder to tell the difference between coins and some noises aren't tolerable any more.

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Bedofweeds in a previous post you stated that you gave yourself 100mgs of morphine twice a day plus top up doses of of oramorph I would challenge that you are unsafe to carry out the tasks that you say you do in your post. If you are stopped by the Police and tested under the new DUI laws you will be arrested because your blood level will be massively over the limit.

 

 

 

You do become tolerant to morphine but that will not alter the fact that your blood level will be way over the limit. I too take morphine based analgesia and find complex tasks at times impossible how you can put yourself and others at risk by driving is truly astonishing.

 

 

In the world of Walter Mitty anything is possible.

 

Corruptissima re publica plurimae leges

 

Being poor is like being a Pelican. No matter where you look, all you see is a large bill.

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who ever voted the tories in have brought this on them selves.

 

Why? What has this got to do with the current Conservative Govt? Nothing - as ATOS were appointed under the last Labour Govt to provide this assessment service to DWP.

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They claim that working is beneficial. Yet, what good does it do for someone who comes home every single day in pain?

 

That's not quite what the statement said, it said "working is beneficial for many people with a health condition": ie not everyone with a condition, not everyone who is in pain, but simply many people, without including or excluding specific groups. That said, it does sound like someone with common sense trying to repair the damage done by ATOS's "medical examiners" :)

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Why? What has this got to do with the current Conservative Govt? Nothing - as ATOS were appointed under the last Labour Govt to provide this assessment service to DWP.

 

True, Labour introduced ESA. But the coalition is currently in power, and it is legitimate to hold them accountable for failures in the system three years after their election. If they really thought the previous government had made a dreadful mistake, they could have reversed the policy.

 

They didn't, of course. They doubled down. So yeah, it's fine to blame the Tories.

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True, Labour introduced ESA. But the coalition is currently in power, and it is legitimate to hold them accountable for failures in the system three years after their election. If they really thought the previous government had made a dreadful mistake, they could have reversed the policy.

 

They didn't, of course. They doubled down. So yeah, it's fine to blame the Tories.

 

I agree, as i have previously stated my area carried out the trials and I was on of the first to have a WCA. I went down with my wife and was seen by a very qualified G.P. The process took an hour, it included a physical examination and he also listened to the information given by my wife and I. I scored 30 points.15 In each category.

 

Two weeks later I received a copy of the assessment. It was very detailed and was a true record of both my conditions and events.

 

Since that time the quality of assessment as fragmented due to the semi-qualified nature of some assessors and the constant changing of the guideline and criteria of the assessment.

 

There is only one party to blame because the system set up by labour is unrecognisable to the shambles we have today

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I was reading the descriptors and by my reckoning I should end up with 45 points! By my sisters reckoning I should have even more.... we liked the one about not being able to follow directions and getting lost - I have been known to go the wrong way in my own home town several times when on a particular tablet (tramadol - but only take it at night now) and it co-incides with a bad day.

 

The descriptors seem to be set at a very basic level to catch out a lot of people whose condition varies - if I stay off certain foods and medication together I am not too bad, but mix them up and I have a couple of days when I can barely move, there is no descriptor for that type of side-effect so you have to enlarge on a couple of the other descriptors.

 

I've got to chase the hospital up tomorrow to find out what is happening, I haven't heard anything from the CT scan I had on my neck a couple of weeks ago now (fortunately that was done on a bad day so should have some good results) I was told it takes about 10 days to get to the consultant.

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They now ignore the medication side effects. So you're going to have someone scoring points for not being able to follow directions because they have learning disabilities. Yet. You're going to have someone with the same needs not score points because its caused by medication.

 

If side effects of medication are ignored, you should be assessed as if you're not on medication.

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Sillygirl1, My pharmacist help me with describing the problems I had with side effects she also gave me a lot of information on how each medication reacts with the others I was on.

 

I called my bad days a period of acute on chronic illness. If you say that you have bad days then they take it as that I.E a bad day. Always state how long your bad periods can last. Do they last two weeks out of a month or longer than that. Also state what starts the flare up in your condition, in my case it is cold or repetitive movement or I can just wake up with it.

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Thanks mr-mastiff and estellyn, the advice is very useful as I am just starting on the ESA journey.

 

Today is not too bad, but yesterday was very difficult, mr-M my case sounds similar to yours, repetitve movement - which means I can only type for about 20 minutes, knit or crochet for the same length of time before having to take a break due to tremors or pain in my right hand,

 

When I did do a short term job recently my colleagues got used to me saying 'Ouch' every so often, some days were worse than others. I even know 'Ouch' in several different languages now, including Japanese and Russian!

 

I think stating it is an acute phase is very helpful, rather than a chronic phase, which is more manageable.

 

On the days when I wake up with it I have to just lie there to let my body come back to life, particularly my right hand side. (The CT scan was to rule out a stroke btw).

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I too have the same problem as you have - pain down my right arm to my hand. On top of that my lower back is completely knackered and have to walk like a penguin due to right hip problem for no more than 20 metres, then I am in pain. On top of that I have multiple internal problems, aneurism in the stomach wall, diseased and dead pancreas that is medicated with high regular 12 hour doses of Morphine and those are just a few of my problems. Yet I have no problem driving, just completed my regular 800 mile round trip (every 4th week) to see my father, I can work in my garden, I have just cut a 10' high hedge approx. 120' long, I recently cleaned out all of my guttering and washed down the bargeboards/soffits up my 20' ladder.

 

I am in the Support Group of ESA - have been now for 4 years since I first claimed, receive DLA HRM & MRC.

 

Am I disabled and sick? My medical staff most certainly believe so as does the DWP.

Have the DWP got it wrong then? No, I pass enough of the qualifying descriptors for ESA and have produced enough medical evidence that the DWP have accepted for the DLA.

 

Am I able to do some work, yes.

 

What do I think then of those that are in the Work Group of ESA who say that they are totally incapable of working?

What do I think then of those that are claiming JSA and restrict the type of job that they will accept?

 

 

I would be very careful chopping tree's down doing the guttering etc, all it takes is the dwp to take a bit of video footage and all your benefits could be stopped which could take months of appeals/tribunal to get it back.

 

It's ok saying you can do this that and the other but they will just look at what you are doing, It would then be up to you to prove your medical problems again, no quick phone call will get your esa or dla switched back on.

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I've now got the ATOS form, and with the help of one of my nephews who became disabled (he fell off a mountain on a snowboard) I am going to get this filled in and sent back.

 

I have a copy of the descriptors (thanks to CAG...) and have already worked out wording for some of them. Thing is it is going to take me about an hour to fill out each page separately... I have taken the tip to put reference nos and my NINO number and name on each page.

 

I took my shopping trolley out yesterday again and got a few comments as to why I had one, I find my one very good as I can pull it with a couple of fingers on my right hand if need be. I usually use it when getting a big shop now - yesterday was washing liquid, cooking oils, and a couple of heavy jars. I even had to have help from somebody to get stuff off the shelf for me! Said items are now on my worktop waiting for my nephew to come and help get them in the cupboards.

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The best advice I have ever been given for ESA/DLA/PIP forms is don't feel obliged to tick boxes if they don't fit exactly - never just go for whichever is the 'best fit'.

 

Also, feel free to write anywhere on the forms - you don't get any points for being neat and tidy.

RMW

"If you want my parking space, please take my disability" Common car park sign in France.

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Thanks for all the advice, the form is going to be filled in today.

 

One advantage I have is that the place they use locally for ATOS assessments is a short walk from where I live.

 

Some of the form doesn't seem relevant to my conditions, but as I said, using the descriptors I should have at least 40+ points, bet they give me 0!

 

I am putting my consultants name down on the form where they request it, and my GP, and copying the medical results and appointment letters I have to date, so they can see that I am being dealt with.

 

Sadly CBT won't really help with the pain on a bad day - I've had a few of them lately but as I have no warning of when a bad day will come I am a bit stuck.

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I would be very careful chopping tree's down doing the guttering etc, all it takes is the dwp to take a bit of video footage and all your benefits could be stopped which could take months of appeals/tribunal to get it back.

 

It's ok saying you can do this that and the other but they will just look at what you are doing, It would then be up to you to prove your medical problems again, no quick phone call will get your esa or dla switched back on.

 

Unlikely to deter our 'Andy', in a fit of foot-in-mouth hubris he would produce footage of him performing acrobatic water skiing, and street Parkour. Then insist that all this is perfectly permissible within the descriptors for support group.

 

Corruptissima re publica plurimae leges

 

Being poor is like being a Pelican. No matter where you look, all you see is a large bill.

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Thanks for all the advice, the form is going to be filled in today.

 

One advantage I have is that the place they use locally for ATOS assessments is a short walk from where I live.

 

Some of the form doesn't seem relevant to my conditions, but as I said, using the descriptors I should have at least 40+ points, bet they give me 0!

 

I am putting my consultants name down on the form where they request it, and my GP, and copying the medical results and appointment letters I have to date, so they can see that I am being dealt with.

 

Sadly CBT won't really help with the pain on a bad day - I've had a few of them lately but as I have no warning of when a bad day will come I am a bit stuck.

 

Hi silly girl which part of the form does not seem relevant ?

 

Sillygirl keep a record of how long your bad periods last. I use a pain scale to try and gauge the level of pain.

If you take 0 as being pain free and 10 being the worst pain you can imagine you can state that in 10 days I have 3 days at level 3, 2 days at level 5 and the rest at level 8. Also because your pain is not brought on by any obvious physical activity it is beyond your control at this point.

Edited by mr_mastiff
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While the "Pain Diary" is an excellent idea, would it not be more relevant to when the assessment actually happens to have it as a piece of evidence to support the rest of the form? Or maybe both?

 

I try to work two steps ahead, I put all the evidence I could on the form including a pain dairy for 28 days (GP used it in analgesia review). I included all evidence I could think off that could used on appeal or at tribunal stages. As I understand it it needs to submitted on the original form to be used as evidence if your claim reaches the later stages.

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I would be very careful chopping tree's down doing the guttering etc, all it takes is the dwp to take a bit of video footage and all your benefits could be stopped which could take months of appeals/tribunal to get it back.

 

It's ok saying you can do this that and the other but they will just look at what you are doing, It would then be up to you to prove your medical problems again, no quick phone call will get your esa or dla switched back on.

 

 

I would have no objections to them doing a 3 hour documentary if they wanted to!

I feel that some people are missing the point.

ESA is all about scoring points from set descriptors. It has nothing to do with any illness or ability/inability.

 

To be put in the Support Group you have to score a minimum of 15 points and either pass one of the relevant descriptors or be treated as such.

 

The activities that I described do not contradict ANY of the descriptors that I qualified under for ESA. So how can it be said that the ESA award is wrong if I manage to climb a ladder or cut trees up to 10' high?

 

Back to the ability to work full time and be in the Support Group is quite easy. Someone that is physically unable to walk and is unable to use a manual wheelchair will qualify for the Support Group without any other descriptor applying. This goes also for someone that cannot reach into the top pocket of a shirt or jacket, they too would be put in the Support Group. Then we have coping with social engagement, due to cognitive impairment or mental disorder. That would see you put in the Support Group. You may be a loner and cannot socialise, but you could easily work from home on a full time basis and have no need to have any social engagement.

 

So someone that is physically unable to walk 50 metres or use a manual wheelchair could well be able to sit at a desk in a powered wheelchair and carry out a high pressure job on a full time basis!

 

There are many jobs that people could do that would not contradict being put in the Support Group and many activities that don't feature in the ESA 'test'. Being unable to cope with social engagement, due to cognitive impairment or mental disorder would not preclude someone from tree felling or re-roofing a house, but they would still qualify for the Support Group.

 

ESA is all about gaining points in set descriptors and is nothing to do with the inability to work or being too sick to work. The system tests you against various activities set by the government and NOT against what your illness or condition precludes or allows you to do.

 

Far too many people concern themselves with what they can't do due to their illness and fail to recognise that they have to gain the points relating to the descriptors only - that is what you must concentrate on. Find the evidence to back up the choice of descriptors not evidence that supports your illness.

 

Obviously there are going to be those that no matter how hard they try the descriptors will simply not fit their particular illness or disability. For those then they are unfortunately the losers.

Edited by bedofweeds
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The activities that I described do not contradict ANY of the descriptors that I qualified under for ESA. So how can it be said that the ESA award is wrong if I manage to climb a ladder or cut trees up to 10' high?
Because you're fit for work if you can do those things? I do think if you can do those things, you are fit for work, therefore, committing fraud.

 

Just how can you receive HRM if you can chop down trees?

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Because you're fit for work if you can do those things? I do think if you can do those things, you are fit for work, therefore, committing fraud.

 

Just how can you receive HRM if you can chop down trees?

 

One might think so. but according to the ESA regulations, if you are able to prove and have it accepted that you :

 

Cannot either:

(a)mobilise more than 50 metres on level ground without stopping in order to avoid significant discomfort or exhaustion; or

(b)repeatedly mobilise 50 metres within a reasonable timescale because of significant discomfort or exhaustion.

OR

 

Cannot move between one seated position and another seated position located next to one another without receiving physical assistance from another person.

OR

 

Cannot raise either arm as if to put something in the top pocket of a coat or jacket.

OR

 

Cannot pick up and move a 0.5 litre carton full of liquid.

OR

 

Cannot either:

(a) press a button, such as a telephone keypad; or

(b)turn the pages of a book

with either hand.

OR

 

Cannot convey a simple message, such as the presence of a hazard.

OR

 

Cannot understand a simple message due to sensory impairment, such as the location of a fire escape.

OR

 

At least once a week experiences:

(a)loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or

(b)substantial leakage of the contents of a collecting device

sufficient to require the individual to clean themselves and change clothing.

OR

 

Cannot learn how to complete a simple task, such as setting an alarm clock, due to cognitive impairment or mental disorder.

OR

 

Reduced awareness of everyday hazards, due to cognitive impairment or mental disorder, leads to a significant risk of:

(a)injury to self or others; or

(b)damage to property or possessions

such that they require supervision for the majority of the time to maintain safety.

OR

 

Cannot, due to impaired mental function, reliably initiate or complete at least 2 sequential personal actions.

OR

 

Cannot cope with any change, due to cognitive impairment or mental disorder, to the extent that day to day life cannot be managed.

OR

 

Engagement in social contact is always precluded due to difficulty relating to others or significant distress experienced by the individual.

OR

 

Has, on a daily basis, uncontrollable episodes of aggressive or disinhibited behaviour that would be unreasonable in any workplace.

OR

 

(a) Cannot convey food or drink to the claimant’s own mouth without receiving physical assistance from someone else;

(b) Cannot convey food or drink to the claimant’s own mouth without repeatedly stopping, experiencing breathlessness or severe discomfort;

© Cannot convey food or drink to the claimant’s own mouth without receiving regular prompting given by someone else in the claimant’s physical presence; or

(d) Owing to a severe disorder of mood or behaviour, fails to convey food or drink to the claimant’s own mouth without receiving:

(i)physical assistance from someone else; or

(ii)regular prompting given by someone else in the claimant’s presence.

OR

 

(a) Cannot chew or swallow food or drink;

(b) Cannot chew or swallow food or drink without repeatedly stopping, experiencing breathlessness or severe discomfort;

© Cannot chew or swallow food or drink without repeatedly receiving regular prompting given by someone else in the claimant’s presence; or

(d) Owing to a severe disorder of mood or behaviour, fails to:

(i) chew or swallow food or drink; or

(ii) chew or swallow food or drink without regular prompting given by someone else in the claimant’s presence.

 

 

 

Then you are legally found to have qualified for the Support Group. Whether you are able to work full time is of no consequence, you will be paid the benefit.

I accept what you say, but the law says otherwise. The difference between logic and law.

 

As given in my example where it is established that 'engagement in social contact is always precluded due to difficulty relating to others' you are entitled to be in the Support Group.

 

That is one of the descriptors that I qualify under that has been proven twice (original application and renewal), but it certainly doesn't stop me from being able to work, nor does it stop me from cutting hedges.

 

As for the HRM, that has been awarded because

 

my ability to walk out of doors is so limited when considering

 

 

2.1 the distance over which or

 

2.2 the speed at which or

 

2.3 the length of time for which or

 

2.4 the manner in which

 

I can make progress on foot without severe discomfort.

 

 

Walking is walking, not standing still with a hedge cutter in my hand, nor is it standing on the rungs of a ladder.

 

The test is purely related to the physical fact of 'walking'.

Obviously it would be a different thing if it included 'being unable to stand in one place for more than 5 minutes without moving'. Then I would fail that descriptor for DLA - but it isn't tested.

 

 

Back to the original thread. I have had a look at the MS web page and with some detailed work and medical evidence I can see at least 3 and maybe 5 descriptors that would see people put in the Support Group of ESA.

http://www.mssociety.org.uk/what-is-ms/signs-and-symptoms

 

 

Edited by bedofweeds
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