Why this government is failing the disabled AND the taxpayer (DLA vs PIP)

I have seen a number of news items recently, including periodicals which should know better, saying something like this:

“Disability Living Allowance, the benefit that helps with the extra costs of being disabled, is being replaced by PIP. PIP will have regular face-to-face assessments, rather than DLA which was based on self-assessment questionnaires.

This makes it sound like DLA was an easy benefit to get, that it didn’t require any medical evidence, and that the fraud level therefore must have been high. It is plain misleading, and the truth of what is happening is being buried under debates about Wizard of Oz songs in the charts.

Let me tell you the real deal with DLA.


In 2008, when I first realised I was disabled enough to qualify for DLA, I filled in a questionnaire. It was relatively simple, with tick boxes, and you were given the option to write a little more. I ticked the ones applying to me (I couldn’t cook a meal for myself), and briefly explained the nature of my illness and why that meant that I was physically unable to cook for myself. You were asked for your GP’s details, so I assumed they would phone my GP to confirm my illness and the extent of my disability.

They didn’t phone. They just refused my claim.

The letter said, “You do not qualify for DLA Lower Rate Care because you can cook a meal for yourself.”

Just that.

They had not met me or contacted anyone who had examined me. They just looked at my description of my disability and called me a liar.

I quickly discovered that this was not an unusual case: most people were turned down initially, and you had to go to a tribunal in order to get the right decision. I learnt that although the form appeared simple enough, you would not have a chance of getting your award unless you provided medical evidence from a doctor. Why they had not written that on the guidance notes, I just don’t know. In cases where they weren’t sure, they had their own medical examiner who assessed the claimant in person.

So I appealed and provided them with a letter from my specialist who knew me and my condition well and had written up the notes of my latest appointment with him. He confirmed everything I’d said on the form.

In due course I had a reply from the DWP: it was still a no. This time they had called both me and my doctor a liar.

I got mad, so I went to tribunal for further appeal.

At any point during this process, they could have sent the DWP’s own medical examiner to my house. They often do this as a matter of routine, in cases where the level of disability is in doubt. One lady who worked for the CAB described to me how the DWP medical assessor pressurised her to raise her hands above her head, even though she had said the pain from her Fibromyalgia was too severe. She broke down from his questioning and bullying tactics, but didn’t raise her hands above her head: partly because it would have caused her unbearable pain and made her Fibromyalgia worse, and partly because if she had done it, he would have ticked it off on his sheet as ‘can raise hands above head, no problem’ and she wouldn’t have got the benefit. As it was, he marked it down on his sheet as ‘refused to cooperate with the assessment’ and she had to appeal at tribunal (she won).

When I went into the tribunal that day, three people (only one of whom was a doctor) questioned me. They didn’t only question me about my disability, but about my motives. “Don’t you want to get better?” they asked, as though disability were a lifestyle choice. “You will want to learn how to cook for yourself, won’t you?”

I broke. I cried, and felt like a hypochondriac. I would have walked out (or rather, been wheeled out) there and then, had my degree-educated, thoroughly-researched husband not been there beside me, answering for me when I couldn’t face any more. I won my tribunal. I didn’t feel triumphant; I felt traumatised.

No wonder the statistics said those without CAB advice or legal support were far less likely to win their tribunal. They will have been bullied right out of there. And now, with the government cutting legal aid, I dare say those numbers of tribunal successes will be kept at a government-pleasing low, irrespective of whether or not the DWP make the right decisions.

I was shocked at the effect that the DLA tribunal had on me. I had spent hours scrabbling around the internet to try and work out why on earth the DWP were refusing genuine claimants, and what were the ‘right’ words to describe your disability, all in order to get the £900-a-year benefit for Lower Rate Care. (Despite needing a wheelchair for any distance over 200 metres, I would not have qualified for the mobility component).

The stress of the appeal, the being labelled a liar and scrounger knocked me. The emotional strain contributed to a worsening of my physical illness. I can quite understand why those who have mental illnesses are significantly in danger of committing suicide when they receive a wrong judgement from the DWP.

A few months after the end of the appeal, the brown envelope came again – I had to reapply. The rate of fraud for this particular benefit has always been extremely low: even the DWP’s own figures estimated it at 0.5%. Frankly, I could understand why. The hoops are so hard to jump through.


Under DLA, if your condition was variable or non-permanent, you were reassessed – regularly. This is nothing new. The only cases where people were not reassessed for DLA were cases where it would have been a waste of taxpayers’ money to do so, (for example, congenital blindness.) Now the taxpayer will be paying for such people to go through the stress of constantly being reassessed for PIP; presumably to check for the miraculous. (This also gives the government the option to further change the qualifying criteria for PIP in the future, excluding more disabled people from receiving help.)

I will say it again: DLA was never awarded on self-assessment alone: you always had to provide written medical evidence from your doctor. They always had the option of sending their own DWP medical assessors – which they frequently did – and they always had the option to contact your GP and converse with them, which as far as I can tell, they didn’t.

It was only in cases of severe and irreversible disability that they didn’t constantly reassess. This seems like a good use of the taxpayer’s money, not a bad one.

And remember, DLA is a benefit to help disabled people with the extra costs of everyday living. it is not an out-of-work benefit: indeed, many people use their DLA to put towards hiring a car so that they can get to work more easily. (This is the motorbility scheme: not quite the same as saying ‘disabled people get a free car’).

So what has changed?

The biggest change is the descriptors for who qualifies as disabled.

Can’t cook a meal for yourself? Under DLA: disabled. Under PIP? Not disabled. No benefit.
Can’t walk more than 100 metres? Under DLA: disabled. Under PIP? Not disabled. No benefit.

And what of the claims that the government want to help the most needy?

What this means is that they will continue to give the benefit – the same amount of money, not an increased amount – to those who can’t walk more than 20 metres.

But to all those who can only walk 100 metres (From a non-disabled space in the car park to the supermarket, but not inside the supermarket, and not the return journey to the car) – no help.
All those who can only walk 51 metres (from your front door, across the other side of the road and back again) – no help.
All those who can walk only 25 metres (from your front door, across the other side of the road, but not back again) – benefit cut in half.
All those who are too ill to cook a meal for themselves – no help.

The government will give support to those who can’t walk 20 metres, this is true.

But only if you come, once a year or so, to an assessment centre that may or may not have disabled access, run by an organisation (Atos) that has secret targets to keep the payouts as low as possible, (yet no penalty if their decision is found to be wrong at tribunal). You will then be seen for 30 minutes or so by a nurse or Occupational Therapist (doctors are expensive so kept to a minimum), who may have no knowledge whatsoever about your particular condition and the complexities of it. You better hope you look ill on the day.

It will mean a continual fear of not knowing whether you will get your money.

It will mean that the most vulnerable in our society will feel sick to their stomach every time that brown envelope comes in.
It will mean a cut of £2bn on disability allowance, but an increase of almost £1bn to pay Atos to administrate these changes.
It will mean 500,000 disabled people losing all of their benefit, just so that the government could say they were targeting scroungers and could then afford to give a tax cut to the richest in society.
This is what the changes will mean. Just so we’re clear.

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77 Responses to Why this government is failing the disabled AND the taxpayer (DLA vs PIP)

  1. Celinda 17th April, 2013 at 8:59 am #

    It truly is horrendous when a piece of writing starts outstanding then finishes awful.
    Fortunately, yours does not do this! Haha, thought
    I was gonna say it finished bad, didn’t you? Na, it was fantastic through and through. Well done!

  2. Stephanie 16th April, 2013 at 2:42 am #

    This is incredibly disturbing. I don’t even know what to say, except ‘thank you’ for talking about these issues. I’ve had CFS for 26 years and have encountered enough of these attitudes and lack of understanding to imagine how horrifying it would be to bear this burden in addition to your illness.

    • Tanya 16th April, 2013 at 10:36 am #

      Thanks so much for understanding. X

    • Dawn Richardson 20th November, 2014 at 2:57 pm #

      It certainly is a disgusting disgrace!

      I am a retired Nurse injured badly in my job lifting over 8 yrs initially and a loss of ability to work F/T all this without hoist protection as a young nurse made to lift. Also falling down wet stairs all recorded..the DWP were informed back in 1985 by written statement by me and when I needed the documented evidence they had destroyed it 2008.. I now have cause to claim DLA /PIP and am going through the third degree.. I get NHS Injury Benefit as proof of an injury plus GP Notes….paid NHS Benefit at the lowest level because they too destroyed my MRI / X-rays all in the name of money..what hope when I have been betrayed like this ?

      • Tanya 26th November, 2014 at 4:11 pm #

        I’m really sorry to hear how the DWP have treated you, though sadly, I’m not surprised, because the DWP seem to treat so many disability claimants so badly. I hope you’re able to tell your story to your MP: they need to hear stories like yours. Best Wishes.

    • Pauline 5th March, 2016 at 1:25 pm #

      Hi iv been declined p.i.p even tho my drs know whats wrong with me im still at drs n hospital for my disabiliies.how bad are dwp.they want sort out the ones who are genuine not the scroungers who lie.im so gutted iv been through the mill and stil going through it all.im sick of drs n hospitals but i know theyr there for us why does goverment get us genuine ppl suffer more.sooo unfair.cant get fares back either.

  3. Mia 15th April, 2013 at 10:50 pm #

    Hi dear Tanya
    In South Africa the medical professionals are just starting to believe in the validity of Fm/ME! I don’t even want to go into all the disbelief I encountered along the way of my illness. But I do want to mention that the treatment I received from Christains was the worst to bear. When I was so ill that I couldn’t cook a meal for myself or my family, they were nowhere to be found. It was mostly believed to be an illness caused by demons! I was loved and liked only when I was healthy enough to serve in the countless ministries of our church! I was even told that I surely didn’t want to be known as the one who was always ill as if I had a choice in this matter. I even heard along the grape vine that I was a witch. Now, I know that not all of our Father’s children are like this, but I was amongst many of them when I was at my weakest. Not a nice place to be. I am just so grateful that my husband earns enough to meet our needs.I am just so grateful that our Pappa God enabled me through His grace to forgive for I also know they were not aware of what they were doing!
    Much love, dear friend

    • Tanya 16th April, 2013 at 10:35 am #

      Oh. My. Goodness. I can’t believe how you were treated by Christians! That’s really awful. I am glad that I have never had that kind of response from Christians. It’s so wounding to be labelled as a liar, let alone having demons!! Flip.

      It’s discouraging, too, how far behind most medical professionals are in realising the severity (and physical cause) of FM/ME. I keep praying. (And keep writing!) I hope one day it will change.

  4. Lynn 15th April, 2013 at 8:47 pm #

    Really interesting post and discussion. Thanks for allowing Ruth to have her say as well. Food for thought and prayer for me. I am concerned for the adults with learning disabilities I know from our church group.

    http://www.includedbygrace.wordpress.com – a giveaway week – ‘Making Church Accessible’ book.

    • Tanya 15th April, 2013 at 10:10 pm #

      Thanks Lynn – I always like it when you stop by. 🙂

  5. sandra hughes 15th April, 2013 at 8:36 pm #

    Have been through this myself, having to appeal, and feeling like a criminal. And was very upset by the Atos interview. I will have a review in July, knowing that I will have to go through all of this again. On my appeal notes I said that just because I made eye contact and carried out a conversation did not mean I was unable to do physical things for myself. It’s hard enough having to accept that you are not able to do things as you used to.

    • Tanya 15th April, 2013 at 10:09 pm #

      YES, completely. I think when the system is set up to assume that all sick and disabled people must be liars, then it is an abusive system.

  6. Penelope Swithinbank 15th April, 2013 at 7:55 pm #

    I had NO IDEA – maybe I just have my head in the sand too much; but maybe there are others like me in this. Thank you for raising the problem, for sharing with so much vulnerability and reliving the horrendous way you were treated. Thank you for making me – and maybe others – aware of what is going on.
    – Penelope xx

    • Tanya 15th April, 2013 at 10:08 pm #

      This makes me SO glad I posted it – and I so nearly didn’t press publish! I think I forget that people don’t know the reality. I didn’t know what it was like when I naively filled in that form – I think there is an expectation that the system will be fair. Thank you so much for taking the time to understand. I really appreciate it.

  7. Alison Whale 15th April, 2013 at 1:22 pm #

    One of the problems has always been that even face to face examinations are totally inadequate when trying to assess how disabled someone with a fluctuating condition like ME/CFS is as we often look ok and can do some things as a one off but not consistently. My first DLA assessment a doctor came to the house and asked me to raise my arms and walk across the room and back both of which I could do on that day. I explained in detail how I was affected and that I couldn’t cook a meal or walk more than 25m most days but still got a letter telling me I wouldn’t get the benefit as they believed I could cook a meal and walk too far (ie. I was lying). I didn’t have the strength to appeal. The second time I got expert advice and help to fill in the form and got lower rate care and higher rate mobility even though I was less ill than the first time I applied. The whole thing is so stressful. You have to jump through so many hoops and have inside knowledge of the system and it has just got a lot harder. There cannot possibly be many people abusing the system as it is so hard to qualify for disability benefits even when you are genuinely disabled.

    • Tanya 15th April, 2013 at 10:07 pm #

      It is a crazy, crazy system. I agree – I don’t think there can be anywhere like the numbers of people fiddling the system – and it shouldn’t be so heavily stacked against people who are already vulnerable and struggling.

  8. Petra 15th April, 2013 at 12:31 pm #

    I think even politicians don’t understand the reality of how their legislation actually works. My partner saw our local MP (Tory) when I was appealing ESA decision. He was very surprised I was put in WRAG instead of Support Group, and said I was exactly the kind of person they were trying to support, yet even a letter from him in my support at tribunal was turned dow!! The whole process is a farce, but a dangerous and damaging one for many disabled people.

    • Tanya 15th April, 2013 at 10:05 pm #

      This is a really helpful point – hopefully MPs will begin to see that their policies are flawed. We can but hope…

      I’m so sorry you lost out at tribunal though – it’s ridiculous and unfair. I know that you have a significant and debilitating illness. It is just not right.

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