Taking The PIP

I very rarely have a rant or talk about politics here, as I like to keep things positive and use this blog as a distraction from the news as much as possible (so don’t worry, I will have my usual monthly roundup of good stuff for you soon). But as the government have got disabled people squarely in their crosshairs at the moment, because we’re such an unwelcome financial burden to them, it would be odd for me not to chuck my two pennies’ worth in, especially as their plans could affect the benefits that I and millions of others receive.

I’m not going to give a deep analysis of it all – goodness knows there are lots of organisations and advocates out there who are far better informed and more articulate than me in covering complex issues like this (e.g. Scope, RNIB, Benefits & Work, Frances Ryan and Jay Watts to name just a few of many). But this is still going to be a bit of a ramble, because I want to give my reaction to the plans to add my voice to all the others, particularly regarding the changes to Personal Independence Payment (PIP) and the way it’s been falsely linked to people’s ability to work.

But ultimately I feel a real sense of unease, disappointment and anger at the way we’re being treated and scapegoated right now. Huge numbers of disabled people and the organisations who support us have already made it abundantly clear to the government that the plans will make things worse rather than better, because we naturally have a deep understanding of what it’s like to live with a disability, claim benefits and try to find work. And I haven’t seen a single disabled person defending what Labour are doing. Yet the government are completely dismissive of all that and insist they know better, and are quite happy to let misinformation spread as well.

Contents

• Welfare Reform Plans
  • Green Paper
  • Consultation
  • Media & Online Coverage
• Personal Independence Payment (PIP)
  • Daily Living Criteria
  • Claim & Assessment Process
  • Employment
• Conclusion

Welfare Reform Plans

Green Paper

It was a relief to get the Tories out at the last election – and still is, as they say these cuts don’t go far enough, as do Reform for that matter – and there was hope that Labour, as much as we knew they would be far from perfect, might treat the more vulnerable members of society with at least a bit more dignity. Angela Raynor has a disabled son and looked after her disabled mother for example, so she knows how hard it is to be a carer and claim disability benefits. And Keir Starmer, who has also been impacted by disability through his mother and brother, has spoken out against benefits cuts and disability assessments in the past.

So it’s been very disheartening to see them unveil and support these new plans, which they claim will save £5 billion by 2030. The plans are explained in the government’s Green Paper – and it is important to stress that they are only proposals. They will have to go through a lot of stages in order to happen, and there are likely to be legal challenges as well as political ones. The Work & Pensions Committee has also announced that it’s going to hold an inquiry, which is good news. So the plans may well change in some ways. But the fact that they’re being seriously considered to start with says a great deal, and even if parts do get watered down or stripped out, the final reforms could still be very damaging.

Don’t get me wrong, the welfare system does need fixing, as does unemployment, and of course more disabled people should be able to work if they feel up to doing so, provided there are suitable and accessible opportunities and they’re fully supported in the right way. Nobody’s saying that things are working just fine as they stand, and we know it can never be perfect either, because it’s such a complex issue. There are even one or two good ideas, at least in theory, tucked away in the Green Paper. But causing further hardship by cutting benefits and making them even more difficult to claim simply wipes out any of the good stuff, and it isn’t the way to fix it. And it’s precisely because of the difficulties we already face and our deep distrust of the system that there’s so much anxiety about it getting worse.

The government say that those who need the most support will always get it, but their new thresholds are deliberately set so that many who currently get help or would be eligible for it will lose out. Plus it’s well known that benefit assessors have often got things wrong, either deliberately or through lack of knowledge. That will mean a lot of people won’t be able to afford essential aids, gadgets, adaptations, transport, etc, and won’t be able to access other vital benefits and services for which PIP is an eligibility requirement (such as Carer’s Allowance). And for some of those people, not only do those things help them to live comfortably and independently, but they’re also the very things that enable them to seek and access work in the first place. PIP is a gateway to life, not a barrier.

So there will be a lot of knock-on effects, which at best will cost more money, time and effort to work around – for disabled people, support services, the NHS, etc – while at worst it could potentially cost lives in some cases. That’s not to sound alarmist, but the latter is genuinely a possibility, not helped by the fact that the laws on assisted dying may also be changing, which itself is causing a lot of heated debate that I’m not going to get into. Suffice to say, making disabled people’s lives worse and then potentially allowing others to put pressure on them to consider the ultimate way out is an uncomfortable combination, and therefore needs to be handled extremely carefully. It may well be just coincidence that welfare and assisted dying are being discussed at the same time, but some will inevitably suspect otherwise given their distrust in the government, as it could be seen an extreme way to cut the benefits bill.

Consultation

Updated April 8 to reflect new updates regarding accessible versions and disability groups.

There is a consultation on the proposals that runs until June 30, and the more people that fill that out the better. But there are at least two serious problems with that alone, which completely undermine the consultation process, and arguably render it invalid or at best unfair.

Firstly, it took them a few weeks to make all of the accessible versions available from the outset, simply saying that “further accessible formats will be published on GOV.UK on this page in due course.” It beggars belief that they weren’t prepared to make the consultation fully accessible to the very people it impacts straightaway, when they could easily have done so if they truly cared.

Still, as of April 7 they have finally published accessible versions – though that doesn’t excuse how late they are – and they’ve also listed a number of “accessible” public consultation events in person and online, that disabled people can attend to share their views.

Secondly, and even more seriously, in the Green Paper they’ve quite brazenly said that there are certain aspects they’re refusing to consult on at all, as explicitly stated in paragraphs 37 & 55 plus 103, 105 & 106 (“we are not consulting on this measure / these measures”). In other words, they don’t care what anyone thinks, they’re just going to do them anyway. So if you do fill out the consultation, make sure you address those points as well if you can, as additional emphasis and pressure clearly needs to be put on those areas.

It’s also highly recommended that you write to your local MP, especially if they’re Labour, as the more letters they get from concerned constituents, the less they can ignore it. You can find your MP’s contact details on the UK Parliament website, or the Trussell Trust have a form you can fill in. There are some Labour MPs who have said they will rebel or have expressed opposition, but it’s not enough at the moment.

There’s still no guarantee that they’re going to listen though. Even disability groups are now considering stepping back on the issue, because Labour simply aren’t interested in engaging with them properly over the issue. Sir Stephen Timms, the Minister for Social Security and Disability, has said the government wants the feedback of disabled people – but given that the government are refusing to consult on key aspects of the plans, and the way they’ve been spreading misinformation in the media as noted below, alongside the feelings of disability groups, it’s clear they don’t really care.

Media & Online Coverage

Another thing I’ve found really galling is the way the cuts were announced, and the way the government have spoken about them in the media. It’s not uncommon for governments to leak ideas to the press to gauge public opinion, but to do it for something that will have such a fundamental and detrimental impact on the most vulnerable members of society, rather than actively discussing it first, is inexcusable. They knew full well it would cause a lot of anxiety and distress throughout the disabled community, yet they made no attempt to offer reassurance and show some compassion, and still haven’t done since as far as I can tell.

Liz Kendall in particular, Secretary of State for Work & Pensions, has come across as incredibly patronising and dismissive in her media interviews and parliamentary speeches. She keeps dodging important questions like whether she’s done an impact assessment or how many people will lose their benefits, instead repeating the same rehearsed lines over and over again about the importance of getting people into work (even though PIP isn’t awarded on that basis).

PM Keir Starmer, Chancellor Rachel Reeves and other ministers have followed suit, and they’ve even compared the award of benefits to giving children pocket money – which they have apologised for, but they knew what they were doing, and again the fact they said it speaks volumes about their lack of understanding. Any criticisms or questions about the impact of their plans just gets swept aside and ignored. They’re insistent that they know best, despite the avalanche of feedback they’ve had to the contrary already.

They’ve also freely allowed misinformation and abuse to spread, with some media outlets and other people spreading lies in order to demonise the disabled community, branding us as work-shy scroungers for claiming benefits that we need and are entitled to. Again, the government could easily address this to improve awareness, but they haven’t even tried.

Anyone who claims that PIP is easy to get, or that it’s only for people out of work, or that they know a neighbour on PIP who isn’t entitled to it, or that Motability is just an excuse to get fancy cars for free, etc is lying, or is at best severely misunderstanding if we’re being overly generous. But because other people are – if you’ll pardon the pun – blindly believing such claims, it’s causing further division.

Disabled people have spent decades raising awareness so that we’re understood and respected, and it feels like all that hard work is being undone. It doesn’t help that Donald Trump has been just as dismissive of disabled people over in the States as well, by falsely blaming them for a plane crash and scrapping diversity schemes. So it is an uncomfortable time to have a disability when prejudice is being encouraged by those in charge.

Personal Independence Payment (PIP)

This is the bit I want to focus on, as it’s the changes to PIP that could affect me directly. They might not of course, but the possibility is very much there. I’m just thankful that I recently had my last review, and my next one isn’t due for another 5 years, assuming they don’t change that.

Daily Living Criteria

Paragraph number 106 in the Green Paper – one of the elements they’re refusing to consult on – outlines a new requirement for “people to score at least 4 points in one daily living activity to be eligible for the daily living part of PIP”. Many have observed that this could hit people claiming for mental health conditions the most, as they may have several valid points that are thinly spread out across different categories. And Labour do feel that mental health is overdiagnosed, so they are actively targeting it, which ironically is making people’s mental health considerably worse from worrying about it.

It could potentially affect me as well though, as a visually impaired person. I currently get the standard rate for daily living and the enhanced rate for mobility, but I get the lowest possible score that qualifies in each case. So they’d only have to knock me down by a mark in each part for me to lose my daily living allowance altogether and to put me on the standard mobility rate. That made me very anxious about my last review as it was, as I was fully expecting to lose out, though thankfully I didn’t. I had to work very hard to explain and prove my circumstances as clearly as I could though.

In the case of daily living, I have one 4-point score, along with a couple of 2-pointers, so I would still qualify under the new rules if that held true, although only just. But if the 4-point score had 2 deducted and I picked them up on a fourth category instead, I would still lose out despite having the same total of 8, as having four 2-point marks wouldn’t qualify.

All of which means that when my PIP next comes up for review, I’m going to have to walk an even finer tightrope than before to ensure I don’t lose more than £6,000 per year. That’s a lot! I’m really not looking forward to that.

Claim & Assessment Process

If the DWP were to actually trust and use the evidence of medical experts and support services that we provide, instead of sending us to assessors with no knowledge or experience of our conditions, and if they stopped reassessing everybody who has incurable lifelong conditions (not just the most serious ones, but all of them like me), then that would save the government an enormous amount of time and money, and would greatly reduce the backlog of claims the DWP are struggling to deal with.

But that would be common sense, and it’s sadly not that simple. The fact is that PIP is an absolute pain in the backside to claim by design, even if you’re an existing claimant going up for review, and that’s putting it politely. Anyone who says it’s easy is lying, simple as that. Trolls online will tell you otherwise of course, claiming to know people who are getting it when they don’t deserve it, as if they’re medical experts who know the full details of people’s disabilities and the exact benefits they receive. This is despite the fact that disability covers a wide spectrum and lots of conditions are invisible. And the effects often fluctuate, to the point that a lot of people stay at home on their worst days, so you only see them on a relatively good day in public.

The truth is that the government’s own figures show that PIP has a fraud rate of 0%. They’ve made the process so difficult that it already stops all but a tiny number of fraudsters – but it also means a lot of genuine cases can’t get it either.

While the DWP will deny it, pretty much any disabled person will tell you that the PIP claim process is clearly designed to put you off applying in the first place if possible, or at least to stress you out so much by the time you get a decision that you won’t feel up to appealing it. The form, which you have to complete within a tight timescale, makes you describe in detail everything you can’t do, and makes you feel totally worthless as a result. Then you have to meet with an assessor who knows absolutely nothing about your conditions, and is tasked with doing all they can to catch you out (sometimes even watching you walk to and from the assessment building without you realising). It’s quite a humiliating experience. They then award you the minimum they feel they can get away with (if anything) in the hope you’ll take it and run. If you don’t like it, you can ask for a Mandatory Reconsideration, where another person at the DWP takes a look at it, but that doesn’t usually make any difference.

That whole process takes a long time – it took over a year to get my review sorted out for instance – by which point they hope it will have been enough to make you give up. It is imperative to them that they put you off going to appeal, given that approximately 70% of appeals are successful, as they involve independent judges and experts with common sense, proper expertise and human decency. In many cases, claimants haven’t even had to say anything – the judges have just looked at the evidence and seen how blatantly obvious it is that the benefit should be awarded. Yet the DWP will want you to feel like you’re going to some kind of court, even though it’s nothing like that. Thankfully I’ve not yet had to go through that process, but never say never.

The DWP will disagree of course, claiming that the PIP claim process is designed to help people in need and that everyone is treated fairly. But I’ve never seen any praise from anyone who has gone through the PIP process, whereas a lot of people have said how horrific it is. It’s awful to go through, even for a normally positive person like me, and the DWP know we all feel like that.

For balance, however, in the Green Paper the government have pledged to review the PIP assessment process, saying:

• They will involve “a range of experts, stakeholders and people with lived experience to consider how best to do this” – although they also add that “any changes to the PIP assessment would only be introduced following the reforms”, meaning they’re going to press ahead with the cuts anyway, rather than taking the time to work with people to get the whole process right first. And who exactly are they going to include in the “range” of people they talk to? How are they going to guarantee it’s a fair sample of everyone affected?
• They acknowledge that “some disabled people who claim health and disability benefits lack trust in the health assessment process” – although the word “some” should probably be “most” or “all” really.
• They want to do more face-to-face assessments, but they are “looking at recording assessments as standard”, which would be a great move provided such recordings are also made immediately available to the claimants. It would be better not to have the assessments at all, but still, having evidence of what happens in them is vital. I still have my recording of the telephone assessment I had for my last review. It’s not something I ever want to listen to, but even for future claims it’s important evidence to keep hold of.
• In talking about lifelong awards, they are “exploring ways we could use evidence from eligibility for other services to reduce the need for some people with very severe health conditions and disabilities to undergo a full PIP functional assessment.” But why does that only apply to people with “very severe” conditions? And how are they defining “severe”? I wouldn’t class my disability that way, but it’s still incurable and lifelong and has a big impact on my life. So why should I have to keep going for assessments where I keep repeating myself? It’s wasting everyone’s time.
• They add that “Most people with ongoing awards are not formally reassessed. Instead, they have a ‘light touch’ review every 10 years.” and “By providing PIP awards for an ongoing period, we remove the need for people whose conditions are unlikely to improve to undergo more regular award reviews.” They clearly acknowledge that there’s no need for regular reviews in these circumstances, so why aren’t they treating more people that way? My review period is 6 years, yet my condition has barely changed in the 41 years I’ve been alive. My DLA was for life, so I’ve never understood why my PIP isn’t.
• They “want to see what more we can do to increase the quality of evidence we receive, and to encourage and support people to provide the right supporting evidence at the earliest opportunity.” Again, that sounds good, but it’s well known that there have been countless occasions where they’ve ignored the medical evidence claimants have provided.

Aspects of that sound alright when written down, and they say they want to “rebuild the trust in the department that has eroded over previous years.” But they’ve got a hell of a lot of work to do to earn people’s trust back, and I don’t think they ever can. Certainly I have absolutely no faith that the PIP process will improve. Given that their goal is to save as much money as possible – which was the intent of replacing DLA with PIP originally, yet it’s only made things more expensive – they’re not going to make the process any easier, it’ll be the opposite if anything. And even if the assessment process were to be considerably improved, it’ll mean nothing against the new 4-point daily living threshold, along with other detrimental aspects of the plans I haven’t gone into.

Employment

Work keeps being mentioned in relation to these plans, so let’s get one thing straight – PIP has nothing whatsoever to do with whether you’re able to work or whether you have a job. I have a career and I also get PIP, as do lots of other people, and I’ve spoken to PIP assessors about my job because they’ve asked about it to get a sense of the activities I need help with. But your employment status and ability has absolutely no bearing on how much PIP you receive.

Yet whenever people in the government are asked about the changes to PIP, they keep talking about getting people back into work, just like the Green Paper does, and the media aren’t being clear that PIP is unrelated. It’s fuelling the misconception among society that people who get PIP aren’t working and are scroungers, or that those of us who do work and get it are being greedy. Even my own mother got confused by the media coverage on it (as being elderly she still gets DLA), so I had to correct her on it.

PIP is simply designed to cover the unavoidable extra living costs that come part and parcel with being disabled, which able-bodied people don’t have to think about. Without PIP, I would have to spend a considerable chunk of my salary on the aids and assistance I need, leaving me with much less disposable income to spend compared to an able-bodied person on the same wage. So I would be unable to participate in the things I want to do and contribute to society and the economy in the same way that non-disabled people can.

PIP is designed to iron out that kind of inequality, so that I’m not financially penalised for having a disability through no fault of my own, and can live independently. And for people that aren’t able to work for whatever reason, PIP is even more of an essential lifeline. What’s more, it’s only because of PIP supporting basic and essential needs that many disabled people are able to work, or at least try to seek work, in the first place. Strip that away and you make it far harder for them, not easier. Yes, there is Access to Work support available once you’re in employment (which has a massive backlog of its own that needs sorting out), but that relies on you getting a job to start with.

And this is where the problem lies – getting work. It’s not PIP that stops or discourages people with disabilities from getting a job, it’s the lack of accessible opportunities and support out there.

If, like me, you’re fortunate enough to have had a good job for a while, then sure, moving on to get another one is perhaps a bit easier, relatively speaking, as you have good experience under your belt and can get a decent reference from your previous employer, to prove that being a disabled person doesn’t stop you giving a good performance. But even then it can still be difficult. And it’s harder still if you’re just trying to get on the career ladder for the first time.

The sad truth is that a lot of employers are still uncomfortable, uncertain or just plain unwilling to take on disabled people, or to provide the necessary accommodations and adaptations, which means they’re missing out on a lot of great skills, talents and personalities. Furthermore, many buildings are still completely inaccessible for disabled people, and many employers don’t offer homeworking (and even if they do it may not be the best solution for each individual). And a lot of public transport is still completely inaccessible too, so even getting to certain places is very difficult or impossible for some people. So ultimately, a lot of jobs that disabled people would love to do and would be able to do are completely out of their reach.

On top of that, there are fewer jobs available in general now, because employers are raising prices and reducing their costs, in response to Labour increasing their National Insurance contributions on top of the higher minimum wage. In other words, it’s now more expensive to employ people, so companies are adjusting to that where necessary. A survey by the Chartered Institute of Personnel and Development (CIPD) earlier this year found that nearly a third (32%) of companies will be making redundancies and recruiting fewer people, while roughly a quarter (24%) are backing down on investment and expansion plans. And then of course technology, particularly with the increasing use of AI, is hitting employment as well. So Labour want to push more people into work in what appears to be a shrinking job market.

They have announced a ‘right to try’ initiative, whereby disabled people can try a job without fear of losing their benefits if it doesn’t work out, and that’s a good idea in theory. But how will that work? Would the job coaches they’ve talked about have any actual knowledge of disability and its impacts and act accordingly, or will they try to find any old jobs just to meet their targets, regardless of whether it’s something disabled people are happy doing or are fully able to do? Will Access To Work support be available during a trial phase, given that those in guaranteed employment often have to wait several months to get the support in place as it is?

Ultimately, therefore, the government needs to do a lot of work with employers, and look at improving the accessibility of buildings and public transport, if they want to be able to offer disabled people jobs that they want and that are truly accessible to them. That would be so much more beneficial than cutting people’s benefits.

Conclusion

That has been quite the ramble, so thank you if you’ve read through all of that. There are all sorts of things in the Green Paper and related coverage that I haven’t talked about of course, I’ve just focused on the aspects that have particularly caught my attention and have felt most relevant to my circumstances.

At the end of the day, it’s difficult to know what to make of it all, especially as it’s unclear what will actually happen in the end. But we are well aware of what the government wants to impose on us if they can. It shows a real lack of compassion and understanding, and a lot of disabled people are fearing for their future as a result.

For me, the impact will hopefully be minimal, if I’m able to keep my PIP at my next review. In theory, and indeed logically, that should be the case. But I know there’s no guarantee of that, as you’re completely at the mercy of whoever assesses you. It’s even possible that writing this post could count against me in the future, as I wouldn’t put it past them to save the link in my records without telling me, or to scour my blog and social media when they next make their judgement of me. That might just be paranoia born out of mistrust, but nothing would surprise me.

All I do know is that every single claim for my benefits in my lifetime has involved a fight – whether it’s my parents claiming DLA for me as a child, which was a nightmare for them, or my own efforts to claim my PIP as an adult, which have stressed me out more than any exam I’ve ever done. Having to constantly justify my worthiness of help from the government, when I never have to go through such a process with anyone else, is tiring, humiliating and demoralising. Thankfully my initial PIP claim and first review were both successful, after the extensive effort I had to put in, but if I have to go to appeal in the future, I would be very much prepared to do so.

But for now, all we can do is keep fighting against these cuts and make our voices heard as much as possible. Nothing is going to change immediately, and the plans may get watered down or stripped back in some ways, so there is still time and reason to be hopeful. And if the plans are causing you stress and anxiety, which I know a post like this won’t have helped with, there are plenty of people and organisations you can talk to. You’re not alone, we’re all in this together.