Government backs down on some retesting for sickness benefits

Government backdown won’t apply to all but is an opening

The Work Capability Assessment (WCA) is highly damaging to those of us who have to go through it. Despite this, both main parties have consistently denied that there is any problem, and claimed that the WCA is necessary to weed out scroungers. That might be about to change.

Firstly, Labour announced at their conference that they would scrap the WCA altogether. This doesn’t mean much right now since they are not in power, but it is a major turnaround for a party that introduced the WCA in the first place and has refused to even oppose most benefit cuts in the last few years. Jeremy Corbyn called the WCA degrading. Debbie Abrahams acknowledged that it makes people feel worthless and dehumanised.

It’s not all good, since they still refuse to oppose benefit sanctions, and used the same old language about work being the goal for everyone, but it is a start.

Secondly, Damian Green, Tory Secretary of Work and Pensions, has told the media that the government will stop repeatedly retesting people who aren’t going to improve.

“If someone has a disease which can only get worse then it doesn’t make sense to ask them to turn up for repeated appointments. If their condition is not going to improve, it is not right to ask them to be tested time after time. So we will stop it.”

This is a huge reversal of policy. Continuous retesting was always the point of Employment Support Allowance (ESA) although there have never been enough resources to apply that to everyone.

Many people are celebrating this. However, there are big questions as the government haven’t specified any details. I’m not sure they even know yet. Reports imply that the exemption from retesting will apply to people with specific illnesses that are known to only deteriorate. If that is the case, then many people who have illnesses that are just as bad as those on the list but are not recognised as such, will miss out. So will people who have not yet been diagnosed, and that can mean people who are sick for years – or decades – before they find out the cause.

The more logical policy would be to apply this exemption to everyone who is in the Support Group, since this category is meant to contain people who have no prospect of improvement. In practice the Support Group doesn’t work like that, and people who will never improve are frequently placed in the Work Related Activity Group instead, thanks to DWP efforts to deny them support in order to keep costs down. If the exemption were to apply to the Support Group only then it would still be unfair to all those improperly placed in the WRAG.

Whether the Government decides who qualifies based on diagnosis, or based on support group, it will still be unfair. However, I do see this announcement as a big win. A Tory government minister said “constant reassessment is pointless” and “does increase their stress and anxiety levels” “causes financial insecurity” to describe repeated work capability assessments. That is a huge admission for the Tories, or even for Labour.

We can use this. We can attack the inconsistencies in the government’s argument. We can point out that the Work Capability Assessment is damaging to everyone. We can show that their descriptions apply to Personal Independence Payments too, even though they’ve spent six years attacking PIP’s predecessor, DLA as “abandoning” people so as to justify welfare reform and repeated reassessments. This isn’t an unqualified victory and won’t necessarily improve things for that many people (perhaps including myself) but this is a major event in the struggle against welfare cuts of the last few years.

Appeal of PIP Consultation Judicial Review Not Successful

This morning we received the final judgment in our appeal of the judicial review of the consultation for PIP. The appeal was not successful.

The full text of the judgment is linked below but I will quote here the key paragraphs that my solicitor pointed out.

  1. Once it was accepted, as it had to be on the evidence, that the Respondent approached the 2013 consultation with an open mind, it seems to me that the challenge to the process as a whole must fail. It is explained in the evidence that all options were open as to the “Moving around criteria”, even if that meant changing the criteria for “Planning and following journeys” or looking for funding elsewhere. The reality was that consultees such as Mr Sumpter had every opportunity to present to the Respondent the difficulties that the move from a 50 metre benchmark to a 20 metre one would cause to them. It is clear that such opportunity was taken. In reality, it would have gone nowhere to contend in the consultation that the physically disabled should continue to be favoured at the expense of those who suffered other disabilities. No doubt none would have wished to present such an unattractive argument. Given the Respondent’s overall policy to make PIP available to a wider category of the disabled, new beneficiaries obviously had to come into the equation and there would have been no point in contending that they should be excluded.
  1. …As I understand the law, consultation has to be fair; it does not have to be perfect. With the benefit of hindsight, it will no doubt often be possible to show that a consultation could have been carried out rather better, but that will not necessarily mean that it was unfair. That is what the judge said at paragraph 123 of his judgment and I agree with him.

I note that the judge did draw attention to the choice that the government made to frame continuing to help physically disabled people as unfairly withholding help from people with mental and cognitive difficulties. He did not, however, find it relevant that the consultation failed to admit the government decision to give new help at the expense of help previously available. The judge implied that people responding to the consultation only needed to talk about the difficulties we would face, not about the decision to take money away for use elsewhere.

It should be noted that the government had previously said while defending this case that they know they are removing DLA from “individuals with genuine health conditions and disabilities and genuine need” and “removing or reducing that benefit may affect their daily lives.” (This is a direct quote of words used by the government and quoted in the judgment in 2014 at paragraph 80.)

[PDF] Final judgment PIP judicial review appeal

For further information please contact solicitors for this case, Irwin Mitchell.

Previously on this subject:

PIP 20 metre rule consultation back in court

PIP judicial review: Court rules against us but vindicates our case

Two weeks until PIP Judicial Review – 20 metre limit in the dock

Replacement of disability living allowance headline news for hours

Why I am suing the government

“Lots of folk can’t afford a car”

PIP 20 metre rule consultation back in court

This time last year we took the Department of Work and Pensions to a judicial review to decide if they properly consulted about cutting help for people who can only walk a few metres.

The original consultation did not make clear the plan to cut the qualifying maximum distance from 50 metres to 20.  In quite strong language for a judge, the court noted that the consultation was  “Mind-bogglingly opaque”, “At best ambivalent”, and “Convoluted, inherently unclear, ambiguous and confusing.  No construction allows for full coherence.”

Nevertheless, the court found – very narrowly – in favour of the government and said that the second consultation, started after this judicial review was in motion, was enough to make things right.

This week we are back in court to appeal that decision. We argue that the second consultation could never have changed the decision that had already been made. The hearing will take place in the Royal Courts of Justice in London from 10:30 on the 14th and 15th of July. The judgement will follow a few days later.

It is frustrating that this case is about whether the consultation on PIP was fair rather than about the cut itself, but the courts cannot decide on government policy. As part of their defence the DWP pointed out that they are fully aware of the impact of their policy, and are removing DLA from “individuals with genuine health conditions and disabilities and genuine need” and “removing or reducing that benefit may affect their daily lives.” The DWP did do a consultation on their policy though, and that consultation wasn’t fair, so that is what we are fighting.

 

Electric Wheelchair in the back of a car
My Motability car, which I stand to lose if denied the high rate mobility component of PIP

 

Background information

As part of the Welfare Reform Act 2012 the government replaced Disability Allowance with Personal Independence Payments. Their main reason for the change was to introduce repeated frequent testing to see if claimants have miraculously healed. They also changed the maximum distance that you can walk and still qualify for help towards regaining your mobility. Under DLA the cutoff was recognised to be 50 metres. Under PIP it has been slashed to just 20 metres. This means that if someone can walk more than 20 but less than 50 metres (subject to a few caveats) then they will no longer get the highest amount for the mobility component of PIP. Assuming the person still qualifies for the lower rate of mobility, this is a cut of £35.65 per week. But worse than that, the higher rate mobility component is a gateway to all sorts of help including the right to lease a car or wheelchair through the Motability scheme. As a result of this cut more than a hundred people are losing their car every week, and many thousands more will follow when they are reassessed for PIP. Losing independent transport means losing independence and access to services.

A prominent example of this came just last month when Teenage Paralympian Kayleigh Haggo was denied the higher rate for mobility and lost her car. Kayleigh got her car back after the decision was overturned a few weeks later but this illustrates the problem that we are facing.

UPDATE
The hearing took place and seemed quite positive however the judgement will follow at a later date, probably October.

Previously on this blog:

PIP judicial review: Court rules against us but vindicates our case

Two weeks until PIP Judicial Review – 20 metre limit in the dock

Replacement of disability living allowance headline news for hours

Why I am suing the government

“Lots of folk can’t afford a car”

Blue Badge Blues

I’d like to show you some tweets. I’ve provided a screenshot as they have now been deleted.

Tweets boasting about stealing disabled parking bays

The text of these tweets reads

“The dirty looks you get for parking in a disabled bay 😀 :D”

“Like there’s not 1000 empty disabled bats and only 1 normal space the other end of the car park “

After a few people noticed these tweets and tweeted their objections (Six replies) she then tweeted

“The spam I just got in my feed about parking in a disabled bay is too jokes 😀 😀 😀 :D”

“These people are protective over their bays loool”

The tweets were then deleted an hour later.

This isn’t a rare occurrence. An awful lot of people think that they should have the right to park in parking bays reserved for disabled people. People like George Osborne, Nigel Farage and Worcester police. Often people think it’s OK to park in a disabled parking bay late at night as though disabled people aren’t allowed out at night, or they think it’s OK because they’re “only going to be a minute” or because “they’ll move if anyone needs it”. Some people just don’t care, and in fact feel so entitled to park where they like that they issue death threats.

It’s not OK though. Those bays exist for very good reasons. They are for people who struggle to walk and need to park close to the shop because otherwise they may be in pain as a result of walking, or maybe they can’t get that far at all. They are for people with chronic illnesses who will be exhausted after that short walk. They are for people who use wheelchairs and need the marked space around the bay to open their doors enough to get the wheelchair out. They are for people whose joints don’t bend much and who can’t contort themselves to fit through a door that only opens as far as the next car in a standard space. And don’t think that someone in a wheelchair will have no problem with going further – plenty of people cannot self-propel in a wheelchair any further than they can walk because of pain or being prone to dislocations or fractures.

Disabled people need those reserved parking spaces to help them overcome the barriers between them and a normal, equal life. You may be able to walk from the other end of the car park, even if it’s a bit far, a bit tiring, and maybe your legs hurt because you’re not used to exercise. For people who qualify for a blue badge, walking from the other end of the car park is a distant dream. If the choice is between park at the other end or not go into the shop, they probably can’t go into the shop.

“I’ll only be a minute”

This is probably the most common excuse. It’s not an excuse though. Don’t do it. In that “minute” which will probably actually be five or ten minutes, a disabled person may have arrived, been unable to park, had no idea how long you would be and then turned around and gone home. They might not have been able to stop and wait because of traffic. They may well not have the energy or be in too much pain to return very quickly.  Or maybe they parked in a standard space much further away, then hurt themselves by trying to walk that much further.

“I’ll move if someone needs it”

This seems like a reasonable excuse, especially if waiting in the car. Again, it’s not an excuse for a number of reasons. First of all, the person that needs the space might not see you waiting in the car to ask. If the driver is not with the car then the disabled person won’t know that they would move it, and they probably can’t park to go and find the driver to ask them. Sometimes they could send a bystander to ask them, but that has variable results.

There’s also the strong possibility of getting verbally or physically attacked just for asking someone to move. This happens, and it happens a lot. How is someone to know whether you will turn out to be nasty or nice?

“There’s loads of spaces”

This excuse tends to happen most at night and it’s possibly the least-bad. It is often true that there are lots of spaces at supermarkets. But take a look at how far those spaces are from the door. The distance from shop to space might be twenty metres for the closes one, but it could be a hundred metres or more for the farthest space. Unfortunately the people who use this excuse tend to park in the closest space to the shop and at my local Tesco it’s not uncommon for the first ten spaces to be filled with cars with no blue badge on display if I go there at 10pm. (Which I do a lot because my illness messes up my sleeping pattern.) The person using this excuse also has no idea how many people might need to park before they return. If lots turn up, they’ll be parking much further away.

Then there’s the unthinking shops that leave stuff in the disabled parking bays.

Or even put more permanent things in those bays.

This video explains why people need disabled parking bays.

“Residential training” for disabled people to be extended

I’ve just come across this government document “Residential Training Provision – Independent Advisory Panel Report” [PDF] and I’m freaking out a bit. I may be wrong – I’m too exhausted to get through the whole document – but it’s full of scary statements.

“Although the primary focus of the panel’s work has been to review the provision of what is often referred to as specialist disability employment training as delivered by Residential Training providers, the panel has been mindful of other DWP programmes such as Work Choice and Work Programme and note the disappointing statistics published recently.”

The document is a review of residential training for disabled people. It makes plenty of reference to “markets”, to “cost/benefit analysis” and to how the programme is great because it is “intensive”. It doesn’t make any mention of the potential health impact of an intensive course on a sick or disabled person, or the practicalities of being away from home with familiarity, provisions for medicines and care, or the impact of upheaval and stress of being forced to go away. In my opinion the most scary statement is this one:

“In the vast majority of cases, the type and severity of a person’s impairment/health condition has little bearing on their ability to secure and sustain employment”

It seems that plans are already in place to send a lot more people on such residential training.

“If the provision continues following this review it will be subjected to an open competition to tender for contracts for provision post August 31st 2014.”

There are plans for non-disabled people too.

The panel considers that the provision can be improved in the following ways:
1) Increase numbers that use the residential element including reaching out to nondisabled people who are long term unemployed and would specifically benefit from the provision e.g. they would benefit from a holistic and intense approach. It could be more cost effective to increase numbers of RT trainees, as the unit cost of provision would then be driven down.

Read the full document – Residential Training Provision – Independent Advisory Panel Report” [PDF]

UPDATE

This isn’t what I thought it was on first impressions, however I still have serious reservations about it. As is pointed out in the comments below:

“This is talking about residential colleges that currently exist that are primarily for adults with severe learning difficulties and/or multiple complex needs. When people in that group reach 19 it often their fervent wish to go to one of these residential places and they often don’t get the chance.”

So, I can see that this can be a positive thing in some circumstances and I was wrong to call it a work camp. However, the attitude of the review bothers me a lot. To claim that impairments and health conditions don’t keep people out of work is just plain wrong. Overcoming barriers in society can only get someone so far; sometimes an impairment just will not let a person work. The suggestion to roll this scheme out to long-term unemployed people shows there is a view that this “holistic intensive approach” is to be used elsewhere, and my fear is that it will be applied to people who are significantly sick or disabled but unlucky enough to be in the work related activity group for ESA. Combined with the DWP’s penchant for sanctions this could be a very bad thing. Also not addressed is how sick and disabled people will function away from their support structures at home.

Sneaky Work Capability Assessment rules judge you fit for work based on imaginary help

There are new regulations for Employment Support Allowance about to come into force on the 28th of January. These regulations were proposed only six weeks before they will come into force, leaving very little time for the impact to be considered.

Worse, these regulations make drastic changes to the assumptions made during the assessment that will result in even more people being refused sickness benefits or told to take part in work-related activity.

ESA SOS! Refusing help
Doc Hackenbush explains the change (Click to enlarge)

The two big changes are:

An assessor can consider what mobility aids, equipment, medical treatments or medicines might help the claimant return to work, and then, without consulting them as to whether the change is suitable, they can judge them fit for work or for work related activity based on them making that change. This completely ignores things like side-effects of medication, suitability of adaptions and mobility aids, or even if such help is available to the individual. This could already happen to some extent, such as with wheelchairs, but will now apply to a far wider range of changes. This also raises the huge problem of medical treatment without consent, since refusing to take a drug that could help a person return to work, even for very good reasons, could lead to benefits being withdrawn.

The second huge change is to how the the assessment considers the relationship between mental and physical health conditions. Where previously any disability or restriction could be applied to any activity, whether it was caused by mental problems or physical problems. These new regulations will strictly separate the two such that one set of questions considers purely physical restrictions, and another set purely mental restrictions. You may be completely unable to perform a task due to mental illness, but be considered able to physically and therefore able to full stop. This equally applies to side effects of medicines. For medicines that treat mental health conditions, only the impact of side effects ON mental health will be considered. Crippling physical side effects caused by treatment for mental health will be completely ignored when deciding that a person can work.

These changes will pull the rug from under the feet (or wheels) of hundreds of thousands more people who are struggling to live, never mind to earn a wage. Make no mistake; whatever the intention of these changes, this is a cut in support.

What you can do

The clearest analysis of these changes that I have read is from Ekklesia. Briefing on ESA Regulations [Ekklesia] I recommend that you read this.

Please write to your MP urgently to oppose these new regulations. You can find and contact your email through Write to Them. My own communication with my MP will be available on this blog later today.

Please share this and other blogs about this subject on Twitter with the hashtag #esaSOS as well as on Facebook and anywhere else you think suitable. A tweet of your own will have far more impact than a retweet.

Please also add your signature to the War On Welfare petition to call for a cumulative impact assessment of this government’s welfare reforms.

Further Reading

DWP guidance on the changes: Memo DMG 1/13 [PDF]

The Employment and Support Allowance (Amendment) Regulations 2012 [legislation.gov.uk]

Diary of a benefit scrounger: ESA SOS

Thousands of disabled and sick people will be hit by new ESA/WCA changes [Ekklesia]

 

The continuing saga of my electric wheelchair

I have to use a wheelchair for most journeys outside of my home and car. Because I do not need one inside the home I do not qualify for any help at all from Worcestershire Wheelchair Services even though an NHS occupational therapist has agreed that I need it, and I get High Rate Mobility Allowance and a Blue Badge for parking because of my inability to walk. I use my DLA to lease a Motability car and I bought my own manual wheelchair which I can only self-propel about as far as I can walk.
My current power wheelchair
My current power wheelchair
I would benefit greatly from an electric wheelchair because at the moment I require someone to push my wheelchair. With an electric wheelchair I would be able to visit places without my wife. My wife intends to go back to work and I won’t be able to go anywhere without her that requires walking more than few metres from my car. Even the medical appointments will be difficult.
After all the drama detailed in previous blog posts herehere and here I applied to a local charity that provides grants for people in and around the area including helping with mobility. They aren’t a disability charity and so they don’t have a great understanding of my problems. They seem convinced that because they have purchased mobility scooters for several people with my illness, that I should be able to get buy with a scooter too instead of an expensive electric wheelchair. My correspondence with them has dragged on for months since I first applied. When I first looked at a suitable chair to obtain a quote I asked about a second controller which would enable an attendant to operate the chair if I were too exhausted to. (This can happen after a long day.) The charity administrator immediately panicked on seeing this in the quote and demanded that I get my doctor to write a letter saying that I could safely operate a power wheelchair. This despite the fact that I drive a car! I had the second controller removed from the quote anyway when I realised that it cost about £500 extra but they still insisted. Obtaining that letter took three months, after which I was sent another letter which I detail here.
Further to your application for an electric wheelchair, we have now received confirmation from your Doctor that you are suffering from ME and would benefit from a mobility vehicle.
However the electric wheelchair you have requested has been quoted by INDY at £2410.22 [This is the price with 2nd controller] which is greatly above what trustees would normally consider for someone with your health grounds. In similar circumstances they have purchased a Aerolite Scooter in the region of £800 which easily fits into the boot of a car.
In order for Trustees to consider your request we would ask that you obtain a report from an independent Occupational Therapist as to why such a specialist chair is necessary for your condition.
I did contact my NHS Occupational Therapist but she declined to provide such a report. I have no idea where to go to pay for a report or if that is suitable so this is where it has stopped for the last two months. I have already considered and tested mobility scooters. They are unsuitable for several reasons:
  1. My size 12 feet do not fit within the footplate of the more affordable smaller scooters and instead sit awkwardly across different levels of the scooter.
  2. The seats on all the scooters that I have tried do not give enough support to my back, leading to pain.
  3. Stretching my arms out to the handlebars puts pressure on my wrists leading to increased pain, and using the arm rests causes me to slouch forward, hurting my back again.
  4. I would have to leave it outside some shops, which is no good as I cannot stand and walk for long enough to queue or browse the shelves for what I need.
  5. I cannot take a scooter on a bus. They’re not allowed.
A larger scooter would solve part of this problem including footspace and seat height, but would cost more and still hurt my arms and hands. The one I tried was also too heavy for me to lift into my car and possibly too big to fit. A proper electric wheelchair would have a good seat, proper arm support, a controller suitable for the level of pain in my hands, enough space for my feet, would be allowed in shops and other places, and could go on buses.
Since my application I have actually bought a second hand electric wheelchair for £300 but while useful on occasion it is far too bulky to go in my car and the batteries are nearly worn out and will soon require expensive replacements. If this local charity insist they will only pay for a scooter then there really is no point in my getting one. I’ll have to use my current chair until it dies for journeys on public transport and will have to have someone with me to push when I go out in my car. I’ll be writing to the charity with all of my reasons and I will also suggest to them that they purchase a slightly cheaper electric wheelchair, although finding one that is both cheap and reliable will prove tricky.

What’s the state of ESA?

This won’t be a short post, but it is a crucially important one.
I have never written about something on this blog that I couldn’t prove to be true. If I didn’t have evidence that I could show you online, I didn’t write about it.
I’ve had many conversations with Labour MPs or peers or journalists or managing directors or trade unions  that I couldn’t share, but each one added to my overall understanding of ESA (Employment Support Allowance)
Today though, I think it’s important that I try to lay out very clearly what I feel I “know” about ESA, WCAs, Atos, the DWP and the current political situation.
I’ve dismissed those I judged to be fools along the way, the way we all do every day as we decide to trust someone or not, to believe something or not. I’ve made my judgements from meeting people, from talking to them. I like to “see the whites of their eyes” when I can. I research people, I try to “know” them and what makes them tick.
I’ve judged evidence and analysis along the way and tried always to get as close to a truth I could prove as possible.
I’ve dug into the history of welfare reform where I could. I’ve tried to find out what was going on with Labour at the time, when were Atos brought in? What was Unum’s involvement, who designed ESA? Which DPOs and charities were involved?
At every stage, with every decision, every   speech, every article, I’ve tried to think of the people who read my blog. I’ve tried to ask what we need to change and why. How to change it. Who are the real enemies? Why? What methods of demanding change are effective?
 Of course, my judgements may not have been yours. I have absolutely no way of actually “knowing” if I was right or wrong, too naïve or too cynical, biased or balanced but the following summary is where I feel we are in my heart from everything I’ve read and everyone I’ve met.
There are so many things that so urgently need changing about ESA, forgive me if I forget any here. For every bullet point, the section in italics is my opinion on where we currently stand.
  •       Medical evidence from own GP or consultant rarely taken into account
One of the most shocking statistics disclosed about WCAs was that DWP decision makers only refer to medical evidence as well as the Atos decisions in 2% of cases. Harrington recommended that medical evidence should always be considered and there has been progress- 8% of decisions are now overturned by DWP decision makers, suggesting they are referring to medical evidence much more. This has not yet been rolled out everywhere, so we might hope to see the figures improve further. However, the ideal solution would be for decisions to be taken by an independent doctor, based on all the evidence available.
  •     Descriptors used to assess fitness to work are far too narrow and not based on real life. They discriminate against those with mental illness, long term chronic illness, learning difficulties and more.
No assessment can ever be fair or functional if the descriptors are wrong. ESA descriptors are so wrong, they need totally fundamental reform. I got the impression that something shifted in the early part of this year. Government suddenly decided to go ahead with a trial of alternative descriptors (you can see them here) that were much fairer and broader and more rooted in a real life test. Though far from perfect, I believe they would give much more realistic results and provide much more opportunity for HCPs to make informed decisions.

The timescales to test these new descriptors is very quick for government. They will be trialled alongside a panel of expert decision makers to see how accurate they are. This process will be run by civil servants and if they are a notable improvement on the current descriptors, government do say that they will be implemented. 

We can help make sure the new descriptors are fairly trialled and the results accurately reported by keeping an eye on the trial, communicating with the charities responsible for writing the new descriptors and making sure that this isn’t somehow quietly shelved while we’re not looking. However, if all went well, we might be looking at the introduction of the new descriptors by 2014.
  •          Disability assessment centres are not all accessible to disabled people, often with no parking (!?!)
This is something that Atos has pledged to change as soon as they can. Whether might choose to be sceptical, but they have said on their blog and elsewhere that they are committed to quickly making all centres fully accessible. 

We can make sure they do this by writing to them and saying how important it is, urging them not to delay and telling them your own stories of trying to access an inaccessible centre.
  •          The Support group is too narrow and far too difficult to get into.
Support group numbers have been steadily rising. Last year the government had to find an extra £1 billion due to paying more people than they had predicted going into the support group. The figures are still rising and suggest they will continue to rise as the Harrington changes are rolled out. Grayling has said that they are “intensely relaxed” about this rise in Support Group numbers if it means those in genuine need are getting help and certainly, there doesn’t seem to be any evidence of this rise being suppressed or restricted. 

Once the latest figures are adjusted to take account of appeal decisions, around 35% will end up in the Support Group, around  42% in the WRAG and 23% fit for work. This is a huge improvement on the shocking days of  new-claim only  ESA stats, where just 6% were going into the support group, 18% into the WRAG and a full 77% of claims not resulting in any award of ESA. 

There’s still a long way to go. I would argue that the support group should be bigger than the WRAG and that 23% is too many being found fit for work, but there really has been great improvement.
  •          Sanctions of any kind, but particularly time limiting bad health to one year, are inappropriate for people with serious illnesses or disabilities.
Sanctions and penalties are most beloved by this government despite no evidence at all, anywhere in the world that they work. They have totally refused to listen or compromise at all over this and I can’t see that they will. The public are currently very supportive of sanctions and mostly believe they should actually be tougher.

However, workfare, work providers and some of the reality of sanctions have taken a hit this year thanks to the work of people like Johnny Void and Boycott Workfare, with big companies experiencing a strong public backlash leading them and charities to pull out of workfare and other failing schemes. 

More to the point, the way the government has set up the “payment by results” scheme, means that small providers who tend to get good results are going to the wall while less targeted, less successful large companies are unable to hit the targets set. The reality is, most sanctions will either never be used, or will be quietly abandoned as the government realise they either cause too much embarrassment or the scheme collapses totally because none of the providers are getting paid.
  •          Decisions take far too long. Appealing a wrong decision can take well over a year.
This is only getting worse with backlogs growing, targets for re-assessment falling further behind and tribunals taking longer. Soon, as the government realise that it is, in fact, impossible to actually assess 2 million people and keep on assessing them indefinitely. They cannot achieve accurate assessment rates assessing 11,000 people a week. There simply aren’t the HCPs to do the job. 

Assessment rates need to fall by around half and government must accept that the whole process will take longer then they predicted. When assessment rates DO fall, the appeal rate also falls drastically as shown in Kettering who have implemented all of the Harrington changes enthusiastically. Getting the decision right first time, by taking the necessary time with each claimant saves the taxpayer millions and the person being assessed trauma and unnecessary waits for tribunals etc.

There is strong anecdotal evidence that Atos and the DWP are now pre-assessing many as unable to work without calling them for assessment. This is exactly what we always said they would have to do. It is how the original IB system worked and though the government are clinging on to the rhetoric, they are realising we were right all along and there really IS no point in assessing people who will never get better and who clearly will never work. This is a big win, but you’re unlikely to hear about it.·         Healthcare professionals (HCPs) used by Atos to assess disability do not have to be doctors and do not need to have any specialism or prior understanding of the condition the claimant suffers from to make a decision.

Atos have pledged “mental health champions”, up and down the country, claiming that they will make the assessments fairer for those suffering from mental illness. This is welcome, but unless the assessor has some knowledge of the conditions they are assessing they cannot possibly make an accurate decision. Atos might consider other teams of expert assessor for other conditions. Though it might mean claimants travelling further to be assessed, if specialist teams were more accurate it would be a small price to pay. All HCPs should have a working knowledge of either general medicine or the speciality of the person they are assessing.
  •         Reports written by HCPs are inaccurate; often bearing no resemblance to what the claimant reports was actually said.
This still seems to be shockingly common. The DWP have said in principle that all assessments can be recorded, but in reality are blocking the process. Until someone being assessed for ESA is afforded the same basic rights as a criminal, and assessments are recorded, claimants cannot make sure this doesn’t happen. 

As both Atos and the DWP have said that assessments can be recorded and have pledged to get working recording machines into assessment centres, we can make sure people get accurate HCP reports by keeping the pressure on the DWP to provide these machines in every centre. This is one area that I know is under great pressure legally too. Having the law on our side can only help.
  •          Questions are misleading, seemingly designed to “catch people out”
A longer assessment using the improved descriptors, should make this less likely, but there is a culture of suspicion between state and claimant that must be talked from the roots up. All the time ESA is only designed to catch the cheats, it will never serve those in genuine need.
  •         Mail containing highly personal and sensitive information on forms is opened and sorted by a third party.
Mails used to be opened by the Royal Mail, sorted and only then sent on to Atos. Once the DWP finally accepted that the practise was commonplace, they have now pledged to stop it. We can make sure they do by keeping the pressure on.
  •          Correspondence sent to the claimant is threatening and frightening.
This is one area where Atos have seemed very keen to make improvements. They have redesigned their website to make information more easily available, less frightening and more sensitive. They now have a patient charter and say that they will work hard to make the whole claimant experience more customer focussed and compassionate. 

They would like people to advise them on how to do that, what we would like to change etc. Of course, we can refuse to make things better right at the point where Atos are asking how to, but that feels a bit like a four year old having a tantrum. We’re grown ups and we can’t change things if we don’t explain what needs to change and why.
  •         Language used by politicians and press to discuss those claiming ESA is derogatory and demeaning. Scroungers, skivers, feckless, festering – we are called all these things. Journalism is often lazy and full of inaccuracies.
For some time now, we haven’t been unheard. Just two years ago, no-one was writing about ESA at all, other than to remind the public that we were all scroungers who could be working. Now, the Guardian, the Mirror, the Independent, Private eye, Political Scrapbook, Left wing blogs and even the Spectator are running regular stories about the failures of ESA and the WCA. Channel  4 have run some fantastic sections on the failures of ESA and even the Daily Mail have allowed blogs about ESA written by the indomitable Sonia Poulton. 

Slowly but surely, things are changing. Bit by bit we are [persuading those that matter to persuade the public that we are right and the government are wrong. 

It is frustratingly slow. The public have to read things many times over before they accept them and we still have a long way to go. But things are totally different now to two years ago and momentum is building in our favour.
  •          ESA had cross party support. There was almost total political consensus that it was good policy.
From my own point of view, this is what I most wanted to change and the thing I’ve worked hardest on. All the time we still have a Labour party blind to the suffering of sick and disabled people, they are not a Labour party. It has been achingly slow with disappointments and faux-pas at every stage. It pains me that I have had to drag Labour to every concession kicking and screaming, that some in the party still think ESA is right. It hurts me to remember some of the judgemental speeches and thoughtless, unfounded coalition policies they originally supported. 

But as I wrote here Labour have made real steps in the past year to put the mistakes of ESA behind them. They are now saying they are listening and travelling the country discussing sickness and disability policy with those actually affected. They have laid out a set of “rights” they believe sick and disabled people should be able to rely on and they have admitted ESA is a mess and isn’t working . Byrne’s Beveridge 2 speech was a turning point in which Labour started to dare to say the word disability again. I DO believe Labour are listening. They realise that we face very grave threats, that we are not just the usual suspects making a fuss. It’s up to us to tell them what we need. We can’t sit at our keyboards complaining then refuse to say what we want. 

The EDM raised by John McDonnell was signed by 114 MPs and became the 3rd most signed EDM Every day a new Labour MP or even a Lib Dem or Conservative join the growing chorus of MPs opposed to WCAs. Again, it’s slow and it’s frustrating, but we’re getting there. 

It is also now Lib Dem policy to oppose WCAs despite their actions. This might not help now, but could come in very handy in the event of a future Lib/Lab coalition,

Once the political consensus is broken, it gets much harder for the government to get away with leaving ESA a shambles. 

Jon Cruddas, the head of Labour’s policy review, has promised to make sure anything we send to Liam Byrne and Anne MacGuire goes to the very heart of discussions over future policy. I believe him because he’s a good guy who’s written articles about sickness and disability that sound just like mine. He is a politician who really understands our issues. 

I honestly believe we have a chance if we just make sure we tell Labour what they have to do and keep the pressure on them to do it. 

But we have to tell them.
  •          It’s pointless expensive and unnecessarily distressing to constantly re-assess those with disabilities so severe and profound that they will never work.
(Dealt with under delays and appeals above)
  •          The help & support politicians say people with serious illnesses and disabilities will get to find work is totally inappropriate and ineffective. It conflates disability benefits with JSA (Jobseekers Allowance) Most people who lose ESA have not found work.
As I’ve argued here and here it is no good sorting out all of the problems above if there is no work sick and disabled people can actually get or do. The work provision is woefully inadequate, the system is not going to make work pay for us and we need to totally re-design the help and support government provide. If you can take part, please leave your comments below the articles and let politicians know what you need to work and what that work should be
  •          The public were unaware of all these faults and generally thought ESA was a good policy.
Sadly, this is the area where we still have the most work to do. Most people still don’t know what’s happening and disability is not an issue they think about often or that interests them much. If we are sitting around waiting for people to wake up and say “Oh, this is terrible, we have to stop it!” they aren’t going to do that any time soon. Think how long it took for Tom Watson to expose phone hacking?  It took years to spill over into genuine public outrage. There isn’t going to be a revolution.
All we can do is chip away, every day, telling more and more people, getting them to tell even more people. Slowly but surely, opinion will change.
If you look at all I’ve written above, we’re well on the way to winning most of the points above. If we haven’t won, we’re at least at the place where we’ve won a seat around the table. We’ve made massive progress since 2010 and the truth is that with new descriptors, accessible centres staffed by respectful courteous experienced staff, more paper assessments taking place, higher support group and WRAG numbers a commitment from Labour to make rights a reality for disabled people and to really listen to what we need we have all the ingredients of success. With Atos claiming that they are willing to improve assessments  implement the Harrington changes and allow assessments to be recorded we’ve come a huge way in two years.
Of course we still have a long way to go, of course it isn’t enough but I think it shows for itself how successful a strategy of engagement and lobbying can be. We would have achieved none of this without sustained and often boring small changes, bit by bit, day by day, chipping away at everything that is warped and wrong with ESA. The government become more and more isolated by the day as the BMA, every main charity, Atos, the press and the opposition parties edge further and further away from supporting ESA.
This might not be the way everyone would do business but I don’t care about saving face or an ultimate glorious win that may never come.
I want to ACTUALLY win and that means compromise, boring detail, hard work and disappointments.
The proof of the pudding will be ESA in 2015. Tragically that will be too late for many, but better to win slowly but surely than to never win at all.
First published at Diary Of A Benefit Scrounger.

If you can only walk twenty metres you’ll get no help

20m in the house of commonsWhen PIP starts to replace Disability Living Allowance next year anyone who can walk just twenty metres will not qualify for help with mobility. Twenty metres is less than the distance most of the disabled parking bays at my local Tesco are from the door. It’s really not much. Hundreds of thousands of people will no longer get a mobility allowance and as a result will no longer be eligible to lease a Motability car. One day it might be you that needs this.

The government has also left out the phrase “safely, reliably, repeatedly and in a timely manner” from the PIP regulations. This means that if a person can do something just once, or can push through pain to do it, they might not get help and can’t even challenge it at tribunal.

These are just two of the largest problems. Please write to your MP and ask them to fix this urgently. I can’t stress enough how urgent this is. You can contact your MP at Write To Them

There is lots more information at We Are Spartacus.

Please also sign the (Stop the) War On Welfare petition which is calling for government to do a cumulative impact assessment on welfare reform. A great many changes are being made all at once and yet the government have not stopped to consider how they will affect people when taken all together.

This is the message that I sent to my MP, you can use mine as a starting point for your own if you are stuck. Remember that MPs pay more attention to unique messages.

Dear xxxxxxx,

I am writing to you about the new Personal Independence Payments (PIP) which will soon replace DLA. It has emerged following the publication of the PIP regulations last week that there are many problems with the regulations, two of which are extremely serious.

Under PIP a person who can walk just 20 metres will not be eligible for the mobility component of PIP. That is an astonishingly short distance. Even the closer disabled parking bays at my local Tesco are twenty metres from the entrance. This decision will deny mobility allowance to hundreds of thousands of people who rely on it, and an estimated 100,000 people will lose their Motability cars in the first year alone as a result.

I also note with alarm that the phrase “safely, reliably, repeatedly and in a timely manner” has not been included in the regulations. This phrasing is extremely important, since a person may be able to do something once but then not again for hours – effectively meaning that the activity cannot be done, but PIP will take no account of that.

Government ministers claim that the vulnerable will be protected. I hope that you can see why I am so concerned about PIP and how this will leave people trapped in their homes without transport and denied support for even the bare minimum of activities that they must perform. Please can you give me your assurance that these regulations will be amended so that disabled people can continue with their lives.

Sincerely,

[Name and address]

 

Reassessing chronic illness

A thought occurred to me this morning. I know a hell of a lot of people who were labelled with the wrong diagnosis for years before receiving the correct diagnosis. Several people I know were diagnosed with ME before later discovering that they have EDS. Others have been told that their symptoms are somataform disorder (All in the head) and all further symptoms ignored even when life threatening. (Even somataform symptoms can be life threatening.) Plenty of people accumulate conditions and symptoms but never receive a further diagnosis for it, instead having everything attributed to the first illness or ignored. For example I had burning pain for a couple of years before being told that it was diabetic neuropathy rather than being caused by my ME.

The Scream - how chronic illness feels

Given that original diagnoses may be wrong, new symptoms may be missed, new tests and new treatments become available, and new research is undertaken, it makes sense to me that after a long period of chronic illness people should get a chance at uncovering new diagnoses and accessing new treatments. I would like to see patients automatically being offered a chance to start again with a blank slate after a decade of serious illness. A new GP (or perhaps two or three) would assess the patient, new tests would be run based on the latest research, and referrals to new specialists could be made. The latest treatments could then be offered. This could be life-changing for a huge number of people. It would be important for this to happen without referrence to notes except where life-threatening treatment needs to be maintained and without patients pointing the doctors towards their preferred diagnosis. There would also have to be patient choice and other safeguards at the heart of this.

The scheme would be expensive, of course, but it could well also pay for itself in replacing ineffective treatments with treatments that work and in enabling people to restart their lives. And in any case, MPs seem adamant that all articles and disability changes often enough that we have to be reassessed for benefits every year, so I don’t see how they can complain about the cost of this scheme.

What do you think?