Archive for April, 2013

Re my last post about Jayne Linney and myself writing an Open letter to Ester McVey

… the open letter is now closed to signatures but is available to view…

We now have a Petition running… Please sign and share… Dxxx

We are both disabled as well as being disability activists. We experience pain and suffering ourselves and see it in our friends, families and colleagues. It is one thing to live with the physical challenges of a disability. It is quite another to hear lies and misinformation every day from our own government.

We have watched sick and disabled friends fall foul of the Employment and Support Allowance process and seen people who are genuinely sick and disabled being left with next to nothing to live on. Some are living in fear of the Personal Independence Payments assessments to come. In this climate, which is confusing and intimidating for some of the most vulnerable in our society, those in power should be operating to the highest standards of integrity and accuracy. Recent reports suggest that the Work and Pensions Secretary may have misrepresented Government statistics to make a political point.

We are concerned that this is just the tip of the iceberg. We believe that Iain Duncan Smith has built a wall of misinformation to discredit all claimants of DLA when the fraud rate of DLA is a tiny 0.5%.

Last month nearly 500,000 people signed Dom Aversano’s petition calling on IDS to live on £53 per week. That was an incredible movement of people trying to hold a politician to account for his words. Please sign this petition, and we might actually see that happen.

Jayne Linney, Debbie Sayers


A few weeks ago after a discussion on FaceBook a fellow blogger Jayne Linney, and myself decided to write an Open Letter to Esther McVey Mp and the DWP about all the misinformation and quite frankly all the twisting of facts and figures that has been coming out of the DWP here is the result … The dead line has now passed and the letter is now closed to signatures although you can view… The letter has also be sent to  the Work and pensions select  committee, and we hope to send it to the Independent and the Guardian… we are hoping to add to those trying to highlight the damaging misinformation coming out of the DWP. The letter has been copied below but you need to follow the link to view the signatures and comments… Dxxx

                           PlEASE FOLLOW THIS LINK TO VIEW -> Open Letter to Esther McVey

Dear Ms McVey,

We the undersigned have been shocked and appalled at your and your fellow Ministers’ persistent misuse of facts and statistics relating to Disability Living Allowance (DLA). We ask that you make correct use of the raft of factual statistics and desist from twisting evidence. Your misrepresentation presumes some sort of illegal activity by DLA claimants; this is particularly disturbing when the DWP’s own figures for fraud of DLA is 0.5%.

Referring to claims you and Iain Duncan Smith have made about a ‘rush to claim DLA before the introduction of PIP Jonathan Portes, director of the National Institute of Economic and Social Research and a former chief economist at the DWP, said:

‘it was part of a “consistent pattern” which threatened to undermine public confidence in official statistics.

“I think it is very unfortunate. These statistics are very important. Government analysts, economists and statisticians work very hard to produce them and they provide important information to the public,” he said.

“It is very important that ministers should not seek to misrepresent what those stats actually do or don’t show. That detracts from the public’s faith in the analysis produced by government statisticians.

“This is, I am afraid, a consistent pattern of trying to draw out of the statistics things which they simply don’t show.”’

No evidence for Iain Duncan Smith benefit cap claim, says research chief 13.04.13

Your persistence in stating that few face-to-face medicals and little or no additional medical evidence are required to obtain DLA, is untrue. The government’s own figures show that just 16% of awards relied on the form only and a mere 9% of DLA funding was spent on this basis.

Your claim that  DLA is awarded without a medical  is simply not true; many claimants have to undergo a face to face medical assessment as part of their application as the DWP website shows: Medical assessments- You might get a letter saying you need to attend an assessment to check your eligibility. Further, the DWP statistics report of November 2011 also clearly demonstrates medical examinations did form part of the assessment process for claims. Table 2:

Savi Hensman’s blog on the Ekklesia website also disproves your claims:

Government minister Esther McVey’s untrue claims about Disability Living Allowance

‘Disability Living Allowance is an “outdated benefit” for which “around 50 per cent of decisions are made on the basis of the claim form alone – without any additional corroborating medical evidence,” stated UK minister for disabled people Esther McVey on the BBC and elsewhere this morning (8 April 2013).

This is completely untrue – the government’s own figures show that just 16 per cent of awards relied on the form only and a mere nine per cent of DLA funding was spent on this basis. McVey was trying to justify the controversial replacement of DLA by Personal Independence Payment (PIP) from today, to be paid to fewer people.’

Savitri Hensman Ekklesia

The latest figure you used in your BBC interview,  that 50% of of claims are awarded without additional medical evidence being sought, may in fact be due to medical evidence being provided by claimants enclosing medical evidence such as letters from consultants and GP’s with their form..

You also state that 71% would “stay on it for life” without further assessments, but there have been no lifetime awards for some time now, so your statement made on the BBC on 8th April 2013 is misleading. The new term ‘Indefinite Award’ requires claimants to undergo reassessment at any time at the whim of the DWP. Is it therefore the fault of the claimant if the DWP fail to exercise that power? You announced a few months ago that DWP would not be testing those with indefinite claims at all until after the next election, even though Indefinite awards make up nearly 70% of all DLA awards and the government claim over and over that it is this group who have been “left to languish”; despite this, you have decided to do nothing about it at all before 2015.

‘She also referred to the claim that, under DLA, 71 per cent of people get support for life without checks. This, again, is misleading. The figure refers to ‘indefinite’ awards, which means that their period may vary according to needs. Recall is possible if circumstances change. This is appropriate. There are many people who have permanent and unalterable disabilities. Moreover, while benefit may be awarded for a non-fixed period, that does not mean it is necessarily ‘for life’. The total number who still get DLA excludes those who have had it on fixed awards and now no longer get it.’

Savitri Hensman Ekklesia

You have persistently used figures for the percentage of all DLA claims which are indefinite (71%) to imply faults in the DLA award process, when you are surely aware that it is the percentage of new claims which result in an indefinite award which is the relevant figure: this figure for 2010 was 23%. Full Fact have made this point very clearly: ‘Since the awards that are given for a fixed period inevitably come to an end, the proportion of the stock of DLA claims that are indefinite is higher. This Culmulative effect accounts for the overall proportion’. It is quite misleading to use the figure for the total caseload to imply that most people receive an indefinite award.

In the press you have continued to indicate the reason for the change from DLA to PIP is the rapidly accelerating growth in the number of DLA claimants, from an initial 1.1million to 3.3million since 1992 and up by 35% in the last ten years, a figure we do not contest. However, we would like to examine the context of the 35% rise (2009-2012); the reform of DLA will only affect working age claimants, with children and Pensioners being exempt from the changes (for now). Moreover there has been significant growth in the working age population since 2002. Without taking account of population change, the increase in the working age DLA caseload from 2002 to 2012 was 24%. Controlling for population change it was 15% (the percentage increase in the rate of receipt) – a figure which actually fell between 2010 and 2012. Why then do you persist in using the wholly inaccurate 35% figure, if not only to make your claim seem more urgent?

Sue Marsh co-author of the Responsible Reform Report states:

“…the government have consistently misled the public over the

new benefit, claiming a 35% rise when Spartacus Report showed clearly that the rise is only 13% for the working age group who will be affected. Physical conditions have remained totally stable, whilst the 13% rise is almost all due to a rise in mental health conditions and learning disabilities, a trend seen worldwide, not just in the UK.”

Sue Marsh, Diary of a Benefits Scrounger.

This brings us to another disturbing trend of recent weeks; statements being made by yourself and Mr Iain Duncan Smith MP, which strongly suggest people are rushing to claim DLA in order to avoid the new harsher PIP assessment criteria…

“We’ve seen a rise in the run-up to PIP. And you know why?

They know PIP has a health check. They want to get in early,

get ahead of it. It’s a case of ‘get your claim in early’.” IDS 8/4/13

Hufffington Post

And you yourself have similarly claimed…

The Mail on Sunday this week reported that McVey believed coalition plans to abolish working-age DLA had led to a huge increase in applications by people desperate to claim the benefit before it was replaced by the new personal independence payment (PIP), which will come with a tougher assessment.

The Mail on Sunday article – based on an interview with McVey – stated: “The decision to introduce new tests has produced an extraordinary ‘closing-down sale’ effect, with rocketing claims as people rush to get their hands on unchecked ‘welfare for life’ before McVey’s axe falls on April 8.”

A spokeswoman for McVey told Disability News Service (DNS) that, although she did not use the phrases “closing-down sale” or “welfare for life”, “everything in the article was a fair representation” of the interview.”

John Pring DNS

We have a number of  issues with these statements, not least of which is the fact that no one can escape the changeover to PIP; every single DLA claimant, whether they have been on it for many years or for five days will have to reapply for PIP in the next few years, so no-one will be able to ‘get ahead’ of it and any ‘last minute’ claim for DLA would simply delay the inevitable. Ergo the suggestions in your statements that recent claims are an attempt to escape PIP appear convoluted and without foundation.  Our assertion is further supported by Declan Gaffney and Jonathan Portes, in an article in the Guardian 15th April 2013 which states:

So what happens if we look at new claims, or indeed the total caseload, for those (between 16 and 64) who will be actually affected by the change? In fact, both fell, in both regions, between those two dates. These falls – well within the normal quarterly variation – tell us little, except to show conclusively that Duncan Smith’s statements are supported by no evidence that he has offered whatsoever.

Declan Gaffney also states in another article on Tuesday, 9th April 2013, analysed statistics produced at which appear to refute these statements.

“I presume Mr Duncan Smith has some basis for this claim, but it’s not supported by the published data on DLA. The changes only affect people of working age, so I’ve charted the number of claims by people age 16-64 with a duration of three months or less, using the data available on Nomis. A sudden increase in people claiming should show up in these figures: I don’t see it. On the contrary, the latest figures are the lowest on record.”

Given our concerns outlined above we request that you officially retract your recent comments with regard to DLA and PIP and issue a fairer balanced statement, based upon accurate data and one which maintains the integrity of Ministers in Government. We request you include the facts that PIP only applies to working age DLA claimants; that there was an increase of only 15% in overall working age claimants, from 2002 to 2012, entirely driven by an increase in claims related to mental health and learning difficulties, that the overwhelming majority of new awards (77%) are fixed term and are based on more than the evidence included in the application form (86%), that there has been no significant rush to apply for DLA whatsoever and that the rate of DLA receipt for people of working age has actually fallen.

Today I have a guest blog post from a friend who wants to remain anonymous simply to protect those around her… This post is a harrowing account of a mother trying to help her child with mental health issues and how the system is failing both the parents and the young  kids who are trying to make sence of their lives with the added complication of mental health issues.

I’m sure I’m not alone in asking that question, especially as a parent of a teen with mental health issues, who reached crisis point at 14. Who went from a reasonably confident, happy young man on the cusp of an exciting future with a good friendship group, girlfriends and a future. To one that was ill kept, frightened, angry and irrational.

There were warning signs of course, easy when you look back, we even tried to get help 12 months before the crisis hit – to be dismissed as he will grow out of it and there is a 12 month wait for CAHMS (Child and adolescent mental health services) so we went away..

Only a parent who has witnessed their child unravel at the seams, can appreciate the powerlessness and desperation to Do Something to help them and yet Where to turn?

I wont bore you with the details of abuse, physical violence, threats, door slamming as they once again leave to god knows where and will they return or will this be the time the police come to tell you your child have been, arrested, killed, admitted to A&E.

The constant tension of do I push and insist on rules and boundaries or accept they are ill and not just an angry teen…the people telling you it’s just attention seeking behaviours and the self harm is deliberate to prove a point, or the time he forced me out of his room so angry he punched a door and once again we had to go to A&E – those conflicted feelings… But

Where To Turn?

The sleepless night, the fear and worry impacting your own health, a sense of powerlessness, locked in a battle to get him help, to fight with school as he refuses to attend… No one ever did explain how you get a 6-foot; well-built angry teen to school…I’d like to see a welfare officer try.  But Where to Turn?


Many promises, all broken, he was dismissed as a drug user who was just being difficult and didn’t want to try – a member of the awkward club, intelligent but unwilling was never in trouble so down the list… Out of sight out of mind


Endless visits, endless brush offs he’s too young to be depressed, it’s a long wait for CAHMS, he isn’t really that bad just try to go out more, sleep better, get a routine…

Where to turn?

Then crisis hit the dreaded phone call – that even as I write this brings a lump to my throat… A friend had found him walking along the street… Virtually catatonic… Then finally a small breakthrough a GP who was actually listening and acted.

She got on the phone thinking it would be an easy referral – boy was she wrong after an hour of the run around she sent us home. Each bit of the system said oh we can’t see him not for weeks and weeks, lists are full, not our type of kid… In effect not our problem.

But she didn’t give in, round and round and eventually she got an emergency appointment in 48 hours… Unheard of but we were grateful. Well I was don’t think teen cared…

We entered the world of CAHMS – nice enough all lovely pleasantry but an angry mentally ill teen who didn’t want to be there, didn’t want to engage in fact didn’t really want to be anywhere… Was never going to be easy. I tried, I begged, I cried and he played with Lego!!

Well that’s not strictly true – at first he tried, was relieved to be heard and listened too we both thought we had got the help he needed. He was prescribed Prozac…  hmmm lets just say the aggressive angry teen become ever more so.

In Yr 10 he struggled on – was not there more than he was… By Easter he pretty much left and never went back. Yr 11 beckoned – he lasted till week 2, when he walked out never to return – school did not honour its promise – as far as they were concerned a room on his own with all the work he’d missed and no support was enough!!!

I cannot truly put into words the fear, isolation and horror of being left alone to cope – no real help, no strategies, no support for me just an ever-increasing crisis… But you see now under Cameron’s “trouble families criteria” we would be one – none school attendance, benefit reliance, council flat, mother with a disability – except we never got on anyone list or radar…

Just left to muddle along, our attendance at CAHMS was erratic, sometimes his dad would go, and sometimes he would go alone sometime he didn’t… School desperately tried to bamboozle me into home educating him… I clung on to one thing… NO I wouldn’t… He was ill they had to offer more… Finally in year 11, 6 weeks before his exams he got a home tutor… With help from his psych nurse – we prevailed the one tiny bright spot in our life at that point.

He had done some GCSE work intermittently in yr 10 on the rare occasions he went – he’s bright my lad and I worked hard to get him to agree to a tutor – His dad helped a bit, but mostly I was left alone to get on with it… Maybe I didn’t ask enough I don’t know but when you’re in the eye of the storm you kind of hope someone will take over and of course they never do…

those 6 weeks were a marvel his tutors were great he worked hard – do the bits of course work he needed and combined with just enough work from Yr 10 and a couple of exams he made the deadline…

That summer day _ I can still remember it clear as a bell he smiling beaming face 2 GCSE’s Maths and English grade C – he was euphoric my lovely, funny bright lad was there for just a moment…

Gosh my eyes are full of tears – perhaps only a parent of a teenager lost to you could understand the feelings when the child so dear to you and yet so lost shows a glimpse that they are still there somewhere…It gives you hope

I wasn’t foolish enough to know he was better, but he maybe had turned a corner… Or had he?

In truth yes and no – we have never returned to the horror times and he has never again threatened me… Perhaps the conversation where I kicked him out and sent to his dads about just how men become abusers of women… Who use violence and the threat of it to get their own way… Not a pleasant conversation to have with a 15 yr old…

He went to college, got through the yr just… Got in with yet another crowd who abused his desperation to fit in… Imagine if you can the utter despair of your 16 yrs old celebrating his birthday with 1 person who had remained… And not one other person came – I cannot begin to describe how much I wanted to pick him up and protect him from that pain…

I made mistakes god did I, my own fear and pain permeated our life… Just as much as his… But I tried I never once walked away… I took every bit of shit he threw at me… Cause after all who else would?

I’m no saint – far from it but I loved him then as I do now…

Forward wind 3 years… Its rough still and he is still a shadow of the 14-year old with such promise – he no longer lives at home, and our rocky relationship hanging by a thread is growing stronger…

He has little help, lives on ESA and is not shy in telling me how bad a parent I was how I let him down, how angry he was with me and by the time I did something at 14 it was too late what could I say but I’m sorry…

I don’t know how to end this blog post… The one none of you will, ever read… Other than why do we allow families to reach crisis point before anything is done?

why are you left alone to struggle on and no one helps – no one steps in and I’m just 1 mother with a son who flew off the rails, who lost his way and in the process almost lost himself…

I don’t know what the future holds for him – but we were never a problem family we just had problems… Mental illness can strike at anytime but for teenagers and their families the brick wall and impenetrable maze is soul destroying…

If I could change it I would

1. Have a pediatric psych on call in A&E not leave people to have to make an appointment and do it themselves with no support

2. Have rules around mental health for teenager so case conferences are triggered and early intervention happens to prevent a crisis

3. Have inpatient space for teenagers at risk who may not be acute but are close to it where time out and space to be assessed might prevent a total melt down

4. Offer help, support time out for parents and carers – give them advice and help not just leave them to cope cause you know what we don’t.

5. Have a fundamental review of CAHMS and mental health services in this country but not just from a professional’s perspective – from young people themselves they know what they need listen to them.

But above all I wish no other family has to go through what we did… Sometimes I allow myself an If Only moment… What could I have done differently? But more important what could someone else have done to help us when we most needed… Would he now be healthy and well enough to go to be in Uni or creating amazing art work or websites… I will never know. Because we only have now and somewhere out there is another parent facing the same thing…