CW evidence to Harrington
Dear Professor Harrington
CarerWatch is a campaign group representing unpaid family carers. We are a web based group with many members who are sick, disabled, or carers, and we network widely. You can learn all about us -
and here – http://carerwatch.wordpress.com/
and here – http://carerwatchdotcom.myfineforum.org/
As you can see, we ran two General Election campaigns with good cross party support.
Our current campaign at -
is receiving very wide support from many organizations and individuals including RADAR and CarersUK.
Please read the testimony posted by our members at – http://carerwatch.com/testimonies/
We have been consulting fully on our site about ESA for over a year now and you are welcome to see all our discussions.
ESA is causing great distress to our members and we are very glad you are undertaking enquiry. This is our representation to your enquiry.
We have posts by members with the widest range of disabilities and no two are the same. So it is remarkable that they all say the same thing and we feel that this should be acknowledged.
They all fear stress. They all say stress makes their symptoms worse. And they all fear the coercion in the work-related activity group. They think that if they show willing in any way to ‘have a go’ it will inevitably lead to pressure to do more hours and then to go on to JSA. So because the work-related activity group is coercive it will not keep them well and it will not motivate them. It is not a safe or productive place for them.
So we feel that because the structure of the groups is not right the test is being asked to make an unrealistic and artificial allocation and that is why it isn’t working.
There is especially a great deal of concern about the Work Capability Assessment (WCA) and we will discuss the details of this test with you at length. The second part of the representation will concern the ESA itself, and the distribution of claimants into the work-related activity group and the support group following the WCA.
The most worrying aspect of the WCA, and consequent distribution between the ESA groups, is that the ‘health professionals’ who conduct these assessments are not necessarily medically qualified as doctors, but could include a number of professionals with nursing qualifications. The Incapacity Benefit caseload who will all have to undergo WCA, includes a number of people who are severely ill or disabled. These disabilities may well be hidden, ranging from those diagnosed with cancer to sufferers of ME and specific mental health problems. Such people may experience different symptoms from day-to-day, and on a case-by-case basis. These people cannot be deemed fit for work by anyone except their own doctors and consultants, or another expert in their particular illness.
This expertise is missing from the WCA, which has led to well-reported cases of seriously and terminally ill people being found fit to work. Further, 40% of appeals against WCA decisions are upheld, rising to 70% when the claimant has representation. A House of Lords debate earlier this year noted that “Between April 2009 and March 2010, the ESA appeal numbers quadrupled. Between April and June 2009, there were 10,100 appeals; between July and September 2009, the number had risen to 29,000, and by March of this year there were 46,500 appeals, which is 126,800 appeals in one year. That represents more than 37 per cent of all appeals for all benefits, and nearly double that of attendance and disability allowance appeals. Equally worrying is the fact that 40 per cent of appeals that went to hearing were successful, with many thousands more successfully dealt with without the need for a hearing.”
That such a high proportion of appeals is successful is not only a worrying indicator that the WCA as not fit for purpose, but also that the seriously ill, or less articulate and forthright, who are less likely to appeal, may have genuine cases that are not brought to appeal. Further, people who are not able to call on representation have their chances of success at appeal almost halved, suggesting grave problems for poorer claimants.
Before expanding on problems with the WCA, there are issues that must be considered regarding the “approved” healthcare professionals conducting the WCA and the conditions faced by the claimant, including:
i) lack of provision for audio recording of the assessment by the ESA claimant
ii) lack of specific public information on the medical knowledge that approved healthcare professionals will need to demonstrate. It is nearly impossible for any doctor or nurse to be au fait with all possible medical conditions, whilst good knowledge of mental health problems would require qualifications in that field, meaning that some healthcare professionals would be unsuitable to conduct a WCA for certain people with rare and complex disorders.
iii) lack of publication of the criteria by which healthcare professionals will be assessed other than medical knowledge (practical training, appraisal of casework).
iv) lack of requirement for healthcare professionals to demonstrate understanding of the effects of disability and illness when seeking approval (Chapter 42 of DMG:pages 4-6)
v) lack of exemptions for claimants with chronic disability and illness, or mental health problems, when supported by medical evidence.
Specific weaknesses in the WCA include:
a) The insistence (Chapter 42 of DMG: page 12) that “No customer will be found not to have limited capability for work without either having a medical examination or having been offered one.” One interpretation is that no persons will be declared fit for work without “proof”. However, the sentence also suggests that all cases. However serious or progressive the illness, will be assessed, regardless of documentary evidence. This suggests that expert evidence from the relevant medical professionals will be discounted during the questionnaire stage.
b) lack of information on what the medical assessment will entail.
c) lack of clarity regarding the consideration of written medical evidence from GPs, hospital consultants and other medical professionals during the medical assessment.
d) the scheduling of the work-focused health-related assessment on the same day as the medical assessment, without consideration for conditions causing fatigue
e) lack of clarity regarding the scoring system for the work-focused health –related assessment. Various activities have descriptor “marks” up to 15. To be considered to have limited work capability requires the claimant to have one 15 point disability, or a range totaling above 15 points. The DMG does not provide the justification or reasoning for the assignation of scores to specific disabilities. Thus a number of issues with no direct comparison, either medically or in terms of work, are arbitrarily awarded the same score.
f) this scoring scheme seems weighted against claimants with various mental health problems in that the descriptors of limited work capability focus on the physical ability to accomplish a given task. The tick-box assessment could thus overlook serious mental health problems.
g) the further scoring scheme to prove limited capability for work-related activity is redundant as all these disabilities would be flagged up in written medical evidence.
Another worry is the status of those waiting for the result of their appeal, as there exists a notable lack of clarity on this issue. As 70% of appeals made with representation are successful, this is especially worrying, with the possibility of people being wrongly assessed and then placed on an interim benefit whilst awaiting appeal.
The above problems with the WCA raises the issue of the fitness-for-purpose of the ESA Work-Related Activity Group (conditional) and Support Group (unconditional). Given the list of problems mentioned above, the assumption that claimants have been distributed to the right groups seems tenuous.
The ESA system itself seems confused on this point, as claimants who are distributed to the Support Group have been sent ATOS forms following this decision, beginning the process anew. There are documented cases of a Support Group claimants being automatically re-assessed, and being wrongly moved to the WRAG as a result. This would seem to be a hidden conditionality in what is ostensibly an unconditional benefit.
Reviewing claimants in the Support Group is unhelpful to the claimant due to the stress caused, but is also a waste of resources and time for the claimant and the taxpayer. Most people distributed to the Support Group will have clearly defined medical conditions that will not improve and, in many cases, are likely to progress. As such, reviews are unnecessary bureaucratic procedures.
The work-related activity group in particular seems spectacularly unfit for purpose, as the group is dependent on work-related activity being available for its members. Given that these claimants will have limited capability for work, it seems unlikely that potential employers will be convinced by their capability. Thus the conditionality imposed in this case is not suitable, especially for those with variable conditions. That is, the misapplication of financial penalties is a likely but very unfair outcome for those whose symptoms change markedly in severity over a period of weeks and months.
This combination of problems seems to raise objections to the very concept of conditionality in this benefit.
The work-related activity group also covers too narrow a criteria, with many former IB claimants being found fit to work and thus denied the support that they need. Most IB claimants will have a real illness or disability, even if the WCA “proves” that they are capable of work. Shifting such people onto JSA, alongside healthy JSA claimants, is deeply unfair, given that employers will choose the healthy worker over the ill or disabled. In this case, a person deemed fit to work by the WCA will become trapped by the conditionality of the JSA, and at the same time be denied access to the employment support promised by the ESA.
The final argument is that the assessment process is stressful, and those experiencing this stress are, necessarily, in a poor state of health. Between last October and December, 22,618 people consulted Citizens Advice offices about ESA, the vast majority of them with concerns about the work capability assessment. There is also a large backlog of appeals against work capability assessment decisions. A stressful process will risk aggravating underlying health conditions, and especially so for a number of mental health conditions. The stress exacerbated by the appeal process and by the financial penalties for not complying with work-related activity requirements.
As an example of the fear and stress caused by ESA we would like to cite the case of Trickle who posts on our site about his condition as follows -
You can use as many sticks as you want but until you remove discrimination from the employer I’m not going to have any hope – and I only have a physical condition. At the moment the sticks are all aimed at the wrong people – where are the sticks for those who are expected to employ us. Until we balance this properly nothing wll happen.
I am 27 – I finished working when I was 24 – I certainly haven’t given up, I’ve tried retraining a number of times – and it has always failed as what is required is always more than my body can handle.
At present I’m stuck in bed – possibly for longer than two weeks. I can still type (though i have to be careful about how much I do this) I could do any ammount of paper work at home utilising email and voice/type software – in fact I am about to dissect information for personal budgets to be given to service users. I’m doing this for free to try to enable other people to use personal budgets with confidence. I’m in a good position to do this, I have a physical disability, I’ve suffered chronic depression, I have family with varying levels of severe mental illness and I have worked with adults with learning disabilities. I have some experience of disabled children and their parents. I also have dyslexia. All this means I am quite disability aware – and I can use this knowledge to make the information as accessible as possible. I’m quite valued (though not in monetary terms) for this – but there is no money to employ me.
I’m just never going to be as productive as an able bodied person – and I’m always going to have weeks at a time where I cannot leave my home. I’m always going to get so fatigued I can’t think and must sleep – from sitting for too long.
I’ve a horrible feeling that it is the whole system thaty would have to change to accomodate someone like me. An allowance that the money made from me as a productive unit will always be less. That is a lot to ask of an employer – to expect to get less in return than they would usually expect – I think it may be a step too far in all honesty. However if it is a step to far for our present economy – how do you justify placing any sanctions on me as a round peg cannot fit into a square hole no matter how many times you whack it.
It seems to us that Trickle is always going to need a safe place to operate from so that he can face these challenges. This means a safe place where he will not be threatened with conditionality and sanctions.
He needs to be able to access all the back to work help in a voluntary way without fear of being moved up the ladder and ending up on JSA or being asked to do more than he feels able to face.
Carer Watch do not consider that conditionality and sanctions should be applied to people with enduring illness or disability. Carer Watch believe that every one no matter how severe the disability should be able to access full back to work help when they want it. However, people with enduring disability already face daily battles with their illness / disability and the difficulties of the competitive job market and that is enough pressure. They should be able to make their own decisions, freely without sanctions, as to how they deal with these challenges.
So unless the ‘support’ group is adapted to be a safe place for all people with severe and enduring illness/disability where they are entitles to remain and receive back to work help freely without sanctions – there is no safe place for these people to go.
So sadly changing the test will not help.
We feel the test is being asked to make an unrealistic and artificial allocation and that is why it isn’t working.