Tag Archives: disabled people

Hoban Meeting Update

So, yesterday, as most of you will know by now, representatives from Spartacus finally got to meet with Mark Hoban to discuss Employment and Support Allowance and Work Capability Assessments after almost a year of trying.

Other online groups representing sick and disabled people had felt very strongly before the meeting that it should be made explicitly clear that WCAs should be scrapped. They are unfit for purpose and no amount of tinkering with descriptors or processes will change that.

We agreed, but felt that for that approach to be credible, there had to be alternative suggestions in place. Happily, in just 24 hours, all of the online groups representing sick and disabled people were able to agree to this solution in time, meaning that we could go into the meeting with the whole weight of the online campaigning community behind us.

We agreed that we would raise the issues people had agreed in extensive consultations on my blog to be the most important and “listen” to what the minister said on these issues, suggesting things that could at least make the process safer in the meantime until we were able to put together an alternative proposal.

With this in mind, here is a summary of the issues we raised and Mr Hoban’s responses. We feel that the meeting was remarkably productive in this sense.

“Before any further discussions took place, Sam explained that there was widespread support for abolishing WCAs. The system causes stress, fear and anxiety, it is not trusted and we doubt that any amount of “reform” would now be able to change that.

Sue opened the meeting by saying that we hoped we could break down the oppositional, partisan and confrontational stance that has often blighted discussions over ESA. She asked for genuine engagement. She pointed out that we had only ever tried to present helpful, evidence based research, aimed at showing how WCAs affect real people. She suggested that we all had experts and networks that could be valuable in re-designing a new system.

Mr Hoban appeared to listen carefully. He and three civil servants all took notes during the meeting. They did seem to genuinely want to discuss issues openly with us. We’re delighted to say that the meeting had none of the frustrating stonewalling or fudging of some parliamentary debates.

45 minutes passed in the blink of an eye and sadly, though we did ask the questions, there was no time to pin down answers on where things stand on mental health assessments/champions and the decision to divide physical and cognitive conditions when it comes to scoring points during an assessment. However, the Chief Medical Officer gave us his card at the end of the meeting and we agreed to chase up or define any issues that we weren’t clear on, so this will be an opportunity to clarify.

Mr Hoban appeared to particularly agree on gathering medical evidence earlier in ALL claims. Civil servants confirmed that an ESA113 was only sent to GPs in limited circumstances. Mr Hoban agreed that medical evidence was crucial at the earliest stage and accepted that sending an ESA113 in ALL cases as soon as the claim is received might be a solution. They accepted that GPs don’t always return this evidence and agreed to do more to make sure that they do. 

Sue suggested that explaining and suggesting the use of “Reliably Repeatedly and Safely” on the ESA50 form more often would be very helpful and Mr Hoban appeared to agree that this would be a helpful change. He particularly agreed that there is a need for more guidance to help people complete their forms in a way that would ensure they give the information needed to make decisions. He told a story of one of his own constituents who had filled in the form particularly badly. He said he thought he could have done a better job himself after just 5 minutes with the constituent and that it was clear much more guidance could be included to help with the process. They committed to looking again at what could be done with some urgency. 

We asked about universal audio recording of assessments and urged that this was the only way to truly know that assessments had been conducted fairly and accurately. Mr Hoban was not entirely convinced that this was the case and cited examples of HMRC losing audio files, which had created even more suspicion. He didn’t rule it out however, and did say that letters would be amended to say that the option was available to all claimants.

We asked about the Evidence Based Review (EBR) and trials of new descriptors for Mental Health and Fluctuating conditions. It was clear from the civil servants that this was taking longer than they had originally envisioned. It had proved harder than anticipated to develop robust descriptors that claimants could
be compared against and which could be tested; some of the original submissions had been too vague to be of practical use. They did agree that so far it is clear that lessons can be learned from this alternative assessment. Sue asked what would happen if the new descriptors were more generous to claimants and would cost more to implement. Would they say it was just too expensive or would the Treasury veto any changes? Mr Hoban confirmed that they would do what was right. There was no financial limit on how generous a new set of descriptors might be and these will be based on evidence not cost. He cited examples of more people going into the Support Group and how that had cost over a billion pounds extra in the first year, but that it had been accepted financially. 

Mr Hoban was particularly concerned by how long it was taking to assess people. He said that he was concerned about what is right even when improvements are difficult to implement and is keen to learn what works and doesn’t work so that the process can be improved. He wants to see a test that is robust, is the right test and has credibility. If changes are identified that would improve the system, then the DWP accepts that. He said that the EBR is a good example of that, as it has proved harder to run than
originally anticipated but the DWP will use the evidence from the EBR to improve ESA. There are no financial limits from the Treasury, and no consideration of cost will be used to decide which descriptors are the best to use.

Sue mentioned concern about targets. Mr Hoban said DWP set no targets. He said they are only concerned about quality. If an assessor was an outlier (ie putting more claimants into the Support Group or WRAG than colleagues) then it is not that the assessor is an “outlier” that matters but that a need to check his or her assessments are right was all that mattered; if the assessments were correct then it doesn’t matter that the assessor was an outlier. Mr Hoban was very clear that targets are the wrong thing, and that they have no place in a credible system. We suggested that Atos are using “norms” either way, even if not part of DWP guidance and it might be worth re-iterating with Atos that this shouldn’t be the case. 

Sam mentioned concern that assessors are saying they are told to presume zero points and award points grudgingly. We want to see an inquisitorial approach, not adversarial. Sue said that the balance of comments from claimants is that the HCPs are trying to trip people up. but maybe all that is needed is to remind Atos that their role is not to be denying people points or benefits.

Mr Hoban agreed with this and said that this is what DWP guidance to HCPs recommends; the HCPs are to gather the evidence as it is. Sue pointed out that whilst this is indeed the written DWP guidance, anecdotal evidence from HCPs suggests that this is not the case during in-house training. Again, taking this issue up with Atos may be helpful. Mr Hoban appeared to agree to this. Mr Hoban mentioned that WCA is just one part of the information that decision makers use; this is why Decision Makers do increasingly disagree with HCPs based on other evidence although we don’t know what the ‘right’ number would be given that high levels of disagreement would also be concerning. 
Sue said how pleased we were to discover that such a high proportion of claims were successful based on paper assessments alone, with no need for a stressful and costly WCA. She suggested this should be even more widespread and almost certainly could be if more GPs returned evidence in time. Mr Hoban appeared to agree that this was the best way of conducting assessments where possible. 
On Mandatory Reconsideration, leaving people without income we pushed very hard, coming back at Mr Hoban several times to try to get some kind of compromise. We argued that it isn’t consistent to give claimants 4 weeks to get evidence in when the DWP has as long as they want for reconsideration. Mr
Hoban indicated some agreement and agreed to review this 6 months
He said they need to see how it works in practice. We argued that in the meantime people are going without money, and would it not be better to give them this money during those first 6 months, and then review it. However Mr Hoban felt that as it was appropriate for these people to sign on for JSA, then there is no poverty issue. Sue pointed out that many would not be able to do that – herself included as her husband works. They would simply lose nearly £500 a month while they waited indefinitely. 
Stef pointed out concerns over the appropriateness of Jobcentre Plus conditionality agreements, and the
concerns over the high percentage of successful appeals that were not borderline but instead had been severely under-awarded points initially when they should have very easily got over the 15 points mark. Sue pointed out that a very high % (16%) of Fit for Work decisions are inaccurate and that few disagreed that the system is flawed as it stands. 
Unfortunately, Mr Hoban still insisted that these people had been found fit for work and it was reasonable to expect them to make other arrangements, time was running out and we had to leave the issue. 
We devoted the final part of the meeting to arguing very robustly that Mr Hoban consider an alternative to WCAs that would be developed by all online groups in unity. We requested a follow-up meeting to present this alternative to ESA/WCA designed by the online disabled community. Mr Hoban agreed that he is very willing to listen to constructive and fully-worked out proposals. He was concerned that given the difficulties that large charities experienced in designing workable descriptors, that we need to be aware of the challenge we have set ourselves. He did however say that if someone has an alterative that works, that is fully worked out and includes an indication of why it would be effective, then that alternative should be presented. Michael Meacher pushed him on a follow up meeting. Mr Hoban concluded that if an alternative could be put together, they are always willing – including this meeting – to listen to ideas that are constructive.”

So, we did our very best for you all. We felt quite pleased that the meeting had been so constructive and we had managed to cover so much in the short time available. If nothing else, some of the clarifications make it easier to know where things stand and what changes the government are considering in the short term to make the system safer and fairer. 
Everyone now has the chance to design a better system that is robust and which works and the knowledge that the minister will at least consider our approach. 
 

PIP 20 metre rule VERY last chance to have your say

This is your very last chance to give your opinion on abolishing DLA and replacing it with PIP, particularly the 20m rule. We Are Spartacus have done our own response (see below) and hope it helps. The consultation ends at midnight tonight

Making the most of the opportunity

01/07/2013

Quick links:
Briefing (for everyone): We are Spartacus briefing on PIP mobility consultation June 2013
Survey (mainly for disabled people; available until 15 July): http://survey.spartacusforum.org.uk/index.php?sid=64787&lang=en

The Government has published a new consultation on the mobility component of Personal Independence Payment (PIP), which is replacing Disability Living Allowance (DLA). The consultation ends on 5 August 2013.

The following step-by-step instructions are designed to make it as straightforward as possible to respond; the instructions you use will depend on whether you’re a disabled person or you’re someone who’s supporting us (eg a health professional).

Step by step guidance for disabled people :

  • Write a response to the Government’s consultation, sending it to: pip.assessment@dwp.gsi.gov.uk Send a copy of your response to: pip20m@janeyoung.me.uk (see note below)
Step by step guide
  • Send a copy of your response to: pip20m@janeyoung.me.uk (see note below)

Note: We’re asking people to copy their responses to our dedicated email address so we can gain an understanding of how people are responding. We will not publish any information that could identify you personally; we’re interested in what you say, not who you are!

Did I touch a nerve IDS?

Oh, IDS is a charmer eh? This petulant, boastful piece of fantasy in the Guardian yesterday smacks of a spoilt child not quite getting exactly what he wants. http://www.guardian.co.uk/commentisfree/2013/jul/28/proud-welfare-reforms-fair-benefits

Last week, I wrote my own piece for CiF asking why, when a system is failing as badly as Atos WCAs would you take that system and roll it out to millions of the most vulnerable sick and disabled people in the country before making sure that it was fair? 

What’s more, why would you constantly increase the rate of unfair assessments from around 25,000 a month initially to over 100,000 now? I hoped that these questions would cause a few awkward, anxious moments over at the DWP – after all, surely it must be someone’s job to keep an eye on what the country says about the God-fearing minister.

I noticed a little throw away line in IDS article from yesterday :

“Questions have been raised about whether the dramatic pace of our reforms is too difficult to implement.”

As far as I know, that was me asking those questions IDS. You know, and I know, that other contractors have been bought in to increase capacity, to cram even more of these vulnerable claimants through a test you know to be unfair – it has nothing to do with improving quality – only you can do that over at the DWP by changing the processes and descriptors.

You know, and I know, that the system is grinding to a halt with nearly half a million claimants waiting way longer in the “assessment phase” than the 13 week target.

You and I know that Atos have constantly increased the number of HCPs (assessors) they employ and asked them to work overtime and weekends trying to clear the backlogs.

And you and I know you cannot possibly hit your target of re-assessing the remaining million Incapacity Benefit claimants by May 2014.

So yes IDS, I raised those questions, but I don’t expect for one second to get an answer.

Thanks for responding to my article though, I must have really touched a nerve eh?

Ex-Atos nurse tells of disgust at Assessments

It’s clearly not enough for sick and disabled people to tell of their horrific experiences of an Atos Assessment for Employment and Support Allowance.

It’s clearly not enough for journalists to write exposes and TV companies to produce documentaries.

It’s clearly not enough for politicians from all sides of the House to debate the failings and iniquities of the Atos test and demand that it be improved.

It’s clearly not enough for the BMA and the RCGPs to demand the immediate withdrawal of the test.

It’s clearly not enough for it to be found unfit for purpose by every major study into it and for every major charity and DPO to denounce it as cruel and inhumane.

So perhaps it will be enough for you to listen to this nurse, who used to work for Atos, carrying out the assessments, her professional disgust, how demoralised she felt, how disgusted by the targets and criteria she was set, the poor quality of the doctors, the insistence that she reject a % of claims every day regardless of merit.

Will this be enough? Will we listen to this? Will we wake up and stop this assault on  decency and dignity? At some point we will. It’s just a matter of time. And how many innocent, vulnerable people suffer until we do.  

Listen here on LBC Radio : http://t.co/BkCFIFKJCv

"Superhumans"?? Again? I thought we went over that?

Look, i can’t help it, but the Channel 4 “Superhumans” ad, celebrating a year since the Paralympics got me all ggrrrrrrr.

I would have had a little rant, but @Hossylass just sent me hers from last year and I couldn’t have said it better :

Clubbed to death……. By a Paralympian (By @hossylass)

Yep it’s that time of year again, and even worse, it’s that time of four years. Paralympic year.
Now I love the Paralympics. I love Paralympians. They are my kind of people. I am a bit jealous though, you know, just a tiny bit. About the size of Jupiter jealous.
I’m not jealous about their success, far from it. I shall be holding my breath in the swimming, twitching and clicking through the dressage, and probably shitting myself during the weightlifting. Yep, I get that involved.
I shall weep at every win, and weep at the losses, sob at the medal ceremonies and dissolve completely at the National Anthem. It’s going to be a right snot-fest.
So why am I jealous? To be honest I don’t think I am. I am just a bit wistful. I want that opportunity, I want to be in that huge competition, I want to be a part of it, but it’s never going to happen as I have, quite simply, got the wrong disability.
It’s wrong for society, its wrong for the Paralympics and it’s wrong for me. I need a disability I can overcome. I need a disability that challenges me to find new and adaptive ways to overcome it. I need a disability that requires tenacity and guts, but is ultimately a massive inconvenience.
But like the majority of disabled people, I got a disability that isn’t.
It isn’t a Paralympian disability. It’s a crappy hiding-behind-closed-curtains disability. Is a fucking lie-down-in-a-darkened-room disability. It’s not even a disability. It’s a gang of stuff going wrong, refusing to behave, ASBO disability.
ASBO disability is a condition, it’s a syndrome, and it’s a collection of pain and exhaustion. Its fear and random, and OMG-is-that-ASBO-or-something-else rush me to A&E stuff. It’s Heartsink Doctor, its rogered-up-the-arse-by-an-elephant, it’s pathetic.
And it ain’t Paralympian.
ASBO disability for me is EDS, and FMS, and CFS, and sleep psychosis. It means that sometimes ASBO disability behaves and lets me concentrate on the ordinary stuff, like my eczema, or reading a book, but in the main ASBO disability is there, playing up, being naughty, demanding attention, making me cry.
But ASBO disability exists, and it exists for most disabled people. It’s what makes sick people disabled and disabled people sick. ASBO disability can mean you get a sickness benefit and a disability benefit, or neither, or one but not the other.
ASBO disability is currently turning the media into a whirlpool of sharks, 99% gristle and teeth, 1% intelligence. And you can’t educate gristle – God knows I have tried. We all have. We have stared in disbelief at Heartsink Doctor, realising that yet again most of a consultation will be taken up in a tedious explanation of ASBO disability. We have been left speechless in the face of ignorance from friends, family and neighbours. We have given up by the time it gets to Social Services. ASBO disability wins because we just can’t force ourselves to describe it yet again.
And because of this, because we are so exhausted by our ASBO’s, because people can’t understand it instantly, we could easily lose the battle of hearts and minds.
We may not look very disabled, and we may not look very sick. We won’t get into the Paralympics, unless they invent some very new and special events involving vomit, pain and shaking with exhaustion.
And that is why all the people with ASBO disabilities are about to be clubbed to death by the Paralympians. Or more accurately, clubbed to death by the Paralympics.
Paralympics have a classification system. It’s rough; I’ve tried to fit into it and failed. But it can neatly grade a person into a group, each group being of the same level of loss of function, impairment or absence. Use whichever language you chose. But it’s there. A quantifiable scale.
ASBO disability refuses to fit on this scale, but it won’t stop Governments and the media using this scale as the only scale.
“Disabled? No you’re not, because look at all these marvellous people who are REALLY disabled, and look what they can do”.
We’ve got weeks of this. Weeks of being told we are not disabled. Weeks of being told that Paralympians are “inspiring” and “genuinely” disabled.
Weeks of being told that we are not. Or a lifetime. But the next few weeks more so.
I can sense the clubs descending already.
Form a Turtle, man the defences, and turn up the heat on the boiling oil pan – we have a battle ahead. Let’s just hope that our friends in the Paralympics will support us as much as we will be supporting them.