ESA retesting to end - Pinched from the BBC

Which physical conditions did they ask about?  They've asked about health conditions for a while but in relation to finding out if the claimant is vulnerable and likely to have problem returning the form so it mainly covered mental health problems, memory problems, learning difficulties etc.  I'm just interested which physical conditions they consider worth making a note of at the first stage and wondering why.

Hi Sukes

One of my problems is short term memory. I can remember them asking about MH conditions such as Parkinsons and Clinical Depression but I can't remember what the physical conditions were.

That doesn't surprise me, they don't seem to have a clue in their left hand of what their right hand is doing. Hopefully the whole lot is falling apart and will go back to as it was.

 

Having been sent to a reassessment on the 15th August by taxi to Salisbury an hour away,, after the poor taxi driver was sent to the wrong address having driven fron Bournemouth 60 miles away. I was sent home again for the second time as they did not have a doctor on site. On return home I ,was promised I would not have to go back but would be seen at home as my GP had requested. To then get this letter saying I had to return to Salisbury. I rang the call centre thinking I was calling Croydon. I explained that obviously a mistake had been made and mentioned the member of staff I had been talking to back in August. She had never heard of this person. So I asked where I was calling, mystified, Newcastle. Why do they not let you know this at the start!!!!!! I fought the DWP twice for PIP AND ESA and was reinstated with an apology . It has been a nightmare from start to finish over a year now. They are completely incompetent!!!!!????

I had a call from the DWP the other day. They wanted ME to write to the court tribunial to tell them what had happened to cancel the hearing. I was also asked for my personal details to ensure that I was who they wanted. I replied that I had been awarded PIP before any hearing and that I don't give personal details out to anonymous callers. I wonder where on earth they are employing these people from?

 

My state pension was a day late this week. I called DWP who said there was no reason, sometimes the system just slows down.

Okay thanks.

Does this mean that only these two 'chronic' conditions will qualify. Fibromyalgia is a chronic condition, life long

They've not decided which conditions will qualify yet.  They've said the criteria will be drawn up with health professionals.  I doubt they'll include fibromyalgia.  I'm just guessing but I think they'll probably include conditions that are better understood and that are currently diagnosed with tests or are more obvious to an observer. I think fibromyalgia would be a controversial diagnosis to include because of the lack of testing currently. 

It will be interesting to see the list when they come up with it and how it's going to work.  They made the point that some people with MS are able to work but that it's a degenerative condition so there may come a point when a person can't work and retesting after this will not be necessary.  This point will still have to be decided by an assessor unless the criteria is included when the list is drawn up.

Fibromyalgia is also very debilitating.

My feeling is that the list will be relatively short. It would and should be restricted to those conditions that are at the top end of spectrum only. The likes of ME, arthritis, depression, anxiety are not in the same league as Parkinsons, Cystic Fibrosis or MS. I suffer from many conditions - really too many to list, but two are PTSD and Chronic Pancreatitis. I know that people say that these two are at the top end, but when I compare myself to say a person who has Parkinsons I feel humble

and ashamed that I should ever consider myself equal as those with Parkinsons etc.

?At least I have all of my faculties and can work, albeit voluntary.

?Incidentally at one time there was a similar list drawn up for DLA where if you fitted into the top sector you were not to be called for an assessment. One of those was if you were prescribed Morphine Sulphate. Ridiculous in my opinion - I am on 100mg of MST twice a day  + as much Oramorph as I want. It's because of those and other painkilling drugs that I am able to function and give my time voluntarilly to the Community that I serve.

It may well be, but you would have to stretch your imagination to be able to put it along side the likes of Parkinsons etc.

I didn't say it's not debilitating.  I'm aware of some the problems people with fibromyalgia have in assessments for benefits and with medical professionals in various other situations.  Either not being believed at all, or having their symptoms dismissed to a certain extent because even if a doctor does accept that they exist they don't have good treatments to offer.  I don't imagine this will suddenly change and the professionals making the decision about the list will all agree, accept that it's debilitating and degenerative and put it on the list.  It might happen, I just don't think it will.  

What do you think?  I'm not asking if you think it should be on the list but do you think it will be put on the list?

The word chronic which now seems to be the flavour of the month seeing as the honourable minister used it this morning, is unfortunately a misunderstood word.as well he knows. To most folk when they hear the word chronic, they think of terrible, excruciating, awful etc etc. It's nothing of the sort. All the word chronic means in medical terms is 'long 'lasting. As acute is short. Not of a prolonged period of time. That is why he used the word chronic. What's the betting hes intending to 'save the intended folk from further assessment to the ones not far from pension. Late 50's early 60's.

He qualified his statement saying the likes of Parkinsons and MS.

You say arthritis isn't in the same league as you mention. Which arthritis are you referring to? I assume osteoarthritis. What about juvenile arthritis. A condition they'll have for the rest of their life since childhood and aggressively getting worse. Hows that for chronic? Ever seen someone in a flare 6 weeks at a time unable to move a muscle.yet day before just fine. plodding on. Thought I'd share that with you. And when they're old enough get told they're fit for work. Really?

I'm not going to debate mine is worse than yours - You just have to think logically about it. The government are more than likely to have a small list of conditions that are by anybody's standard right at the top of the disability tree.

?As I have said I have Chronic Pancreatitis (do a little reading on the subject) yet and despite people telling me that it is a terrible disabling disease as well as being life threatening (GP, Consultants etc ) I don't believe it is. If it is as bad as people make out how can it be explained that I am able to work every week voluntary for upwards of 50 hours a week? I cope because I take high levels of pain killing drugs.

 

I have severe arthritis in my hips knees and wrists I'm only 43 and I'm having to give up the my job as a nurse....both hips need replacing...1st one is imminent...this is only being done because they keep giving way and the pain is afwul....i don't think anyone should be saying theirs is worse than the next persons...we are all applying for it for a reason!!

I have read on the subject.but you miss the point. My point was the word chronic. Not the illness.where did I mention my illness? You presume I was talking about myself. And I never said my illness was worse than worse than yours. Which you implied I did. I didn't. I repeat what I said and stand by it. The medical term for chronic means long standing illness of one particular illness.wether painful or not. But what I struggle with is you saying you do so many hours voluntary work a week. All due respect but what has that do with the discussion. Where does that come into it? Where's the 'logic'in that statement?

The logic Ivan is that I am being told that my condition is chronic, life changing and life threatening. A load of rubbish - I can work with it so where does that leave those who have much minor conditions who say they can't get out of bed? The 'list' that the government are to draw up will be small. Otherwise and as you say, every Tom Dick and Harry is going to be claiming that they have a Chronic illness and it should be on the list.

?Given that there are a lot of serious conditions out there that make mine insignificant. The problem I have is that people will want to jump on the band wagon to try and avoid the re-assessments.

I agree.folk will want to get on the bandwagon.i said as much. All I was saying was folk have also been thrown off even though there condition was chronic and still is. I'm aware your condition is chronic.but why are the government now putting the emphasis on the word chronic? Hope you understand some way to what I'm trying to say.if offence has been caused I apologize here and now. But I still resent their use of the word and in my opinion it is another act of media manipulation by the government.of which the BBC are part

Do you get the impression I don't like the BBC?

I think the point is that it can be life changing and life threatening.  Most conditions vary between people and you're lucky that you can continue to work with it and that the medication works for you and allows you to do that.  Others with the same condition won't be in the such a fortunate position.

If someone else has a condition that results in them being unable to get out of bed would you really consider that a minor condition?  Whatever the diagnosis, if a person is unable to get out of bed I wouldn't consider it a minor condition.  That would probably result in a less fulfilling life than if they were able to go out to work.  I know which I would prefer.

In the round what you have said is the crux of what I don't really understand.

?Here we have the government spouting about a list of chronic conditions. And as you say everybody suffers and has difficulties in different ways despite having the same condition.Hence why I believe that CP to me is not worthy of being in that list.

?I asked a while ago how should you complete a claim form for say a condition like I have. This was whilst I was attempting to claim Attendance Allowance a month or so ago. Yes you can read all about how the patient suffers and what the expected disabilities/difficulties will be. But if by taking medication you can mitigate those difficulties to some degree, do you ignore the medication and say it as it would be if not on the meds or do you say it is whilst taking the medication? Nobody was ever able to give me a proper answer.

I explained how my difficulties had dimished to some extent making it possible for me to work. If the medication was not available then those difficulties would come back with a vengeance.

?Suffice it to say, backed up by the assessor in a home visit, the DWP decided not to award me AA because I no longer have the relevant need for care.

?Also the very fact that I have Aquired Brain Injury along with a diagnosis of Early Onset Dementia seemed not to raise an eyebrow - they probably assumed that if I could do voluntary work either those diagnosis were wrong/overstated or that they were of such level currently that they did not interfere with my normal way of living.

?If only they knew how much strength and energy I put into trying to be 'normal' against the odds.

It makes perfect sense if a condition will only deteriorate that when a person has been assessed as being unable to work because of that condition they're not going to work again so there is no point re-assessing them.  The list isn't going to be an automatic pass to support group with no assessment or re-assessments.  People have to reach that point and be assessed as being unable to work.

As for a condition that causes pain but is well managed with pain relief then they will take account of how you are with that pain relief.  If the pain relief took a long time to start working, or only worked for part of the day then you would have to explain that very clearly.  I looked at how I am on a daily basis, what problems I have and finally which conditions cause those problems. I don't think I'd mention any conditions with pain that significantly reduced or disappeared shortly after I took a pain killer because I considered the problems first rather than the condition.  The pain returning if the medication wasn't available wouldn't be considered unless there was a reason why you couldn't take the medication.

I don't know how AA works, whether the diagnosis is important or whether it's the care needs that are important.  You say you have aquired brain injury along with a diagnosis of early onset dementia.  For PIP that wouldn't mean anything alone.  If you put down care needs that seemed to be contradicted by your voluntary work or something else you wrote down then you'd have to explain how you manage to do those things despite your care needs and your explanation might not have been accepted.  It would then be down to them to consider body language etc. during your assessment too as you've said because they can't just take everything people write down at face value.  Maybe when you applied you didn't explain your care needs adequately or your body language let you down and you didn't come across as genuine when you were assessed.  Maybe they assessed you correctly as not meeting the threshold for AA even though you think you do.

Looking at your first paragraph whilst all medical opinion is that Chronic Pancreatitis is extremely painful and life limiting and the only treatment is for the limiting of that pain then offering up a statement that I work full time doing voluntary work simply because the pain relief allows it, the question of whether I would be fit for work would have to take into account my voluntary work. As such if you can do one then you could do the other and get a proper job. If that was to be the case then that flies against every known medical and social fact that is known about the disease.

?What also comes into play it seems, is how the strong willed the person is. In my case I do not give in to anything even though I actually feel like death warmed up. Best advice to get a good result therefore seems to point towards giving in to the effects of the disease - no voluntary work and not being brave or strong willed - do what most do and sit back and wait for the benefit money to roll in.

?The pain relief is based on Opiates (MST). These are administered at a dose that I feel I need and that the dosage will last for 12 hours. On top of that I take oral Morphine as and when needed to break through a painful episode. Additionally for pain I also take Gabapentin for nerve block.

?Consequently there will always be the right level of drug in my body as long as I take the MST every 12 hours and can accurately measure the voulume I need. There is never a time when it would take time to work or not work at some time of the day. Hence how I manage to get through each day working.

?AA is very similar to what the care element of DLA was but much easier to qualify for. For example someone looking out for me during the night (low blood sugar - type 1 diabetic) at least twice in the night which would give the equivalent of the middle rate care of DLA or night and day needing someone to keep an eye on me over the 24 hours - two or three times for the High rate equivalent of DLA. Government stats actually show that over 80% of first time claims for AA are successful.

?They already have me down as a person of limited integrity - that is marked on all of my DWP files! I won't go into why as it is not relevant. For that reason alone that is why I believe that I was singled out for re-assessment at regular intervals of 24 months despite having an indefinite award on my DLA claim.

?Just one thing bugs me - why have I been given a life award for Industrial Injury Benefit of 40% mentally disabled, why throughout the period 1995 - 2016 was I always and eventually given an award of High Mobility/Middle Care of DLA and whilst on ESA up to my 65th birthday in June 2013 was I always and eventually put in the Support Group - yet not now being able to get any award of AA?

?Anyhow all of that is irrelevant to be honest. I now accept that my days of claiming any disability based benefit are long gone. I want what years I have left to be peaceful without the constant aggravation from the DWP that has plagued me since the mid/late 80's.