Today I want to talk to you about the UK benefits system and how it is letting down the very people it is supposed to help. This isn’t my usual topic of conversation on the blog, so I hope you will give me the benefit of the doubt when I say this is a crucial conversation that we all need to be having.
I’ve been thinking about writing this post for a long time, but two things have stopped me. The first is fear of the negative reaction I may bring upon myself for writing this honestly. And the second is that I simply haven’t had the time or energy to do so, because I have been so busy trying to fight for the support we need whilst struggling with severe health issues. But after the week we’ve had, I’m making time to get this written.
what is going on with the uk benefit system?
I’m not even sure where to begin with this, because there are so many things happening within the benefits system at the moment. In fact it would be impossible to cover it all within one single blog post. But for the purposes of giving a short overview of where we find ourselves, here are some key facts and figures:
- An additional 400,000 children are expected to be pushed into poverty by benefit changes and the roll-out of Universal Credit.
- 2,380 people died after being found “fit for work” by the Department for Work and Pensions (DWP) between 2011 and 2014. Whilst researching facts for this post I was unable to locate a more recent figure, but I will update this post when I can.
- The DWP has spent over £100m on disability appeals, with over 66% of Personal Independence Payment (PIP) and 68% of Employment and Support Allowance (ESA) appeals being ruled in favour of the claimants who had previously been denied support by the DWP.
- More than 280,000 public tip-offs on benefit fraud have led to no action over the past two years due to lack of actual evidence.
These are just four quick snapshots of what is happening within the benefit system at the moment, but they give a clear indication that something is terribly wrong. We are letting down children and those with health issues in a truly horrific way, whilst also engendering an attitude of suspicion and bitterness towards those who are on benefits. How have we reached a place where we look down upon those who are most in need, rather than supporting them?
the stigma of benefits
There is no denying it – there is a massive stigma attached to the idea of benefits. The charity Turn2Us published an in depth report about this very stigma, based on an independent Ipsos MORI survey carried out in 2012 and an analysis of media reports between 1995 and 2011. It is a long read, but there are two points that really stood out for me:
- Benefit stigma rests heavily on the perception that claimants are “undeserving”, and that claimants appear to be seen as less deserving now than they did 20 years ago.
- The media is often blamed for driving this stigma and, whilst there is some evidence of this, it is more important to note that there are specific ways in which this can occur. For instance, whilst the media shares both positive and negative representations of claimants, there is a distinct bias towards the negative view. And whilst negative coverage does not appear to be more prolific than it was in the late 90s, there seems to be more weight added to the “effort” that a claimant makes these days than in previous years.
I found the second of these points really quite profound. In the age of social media, it is easier to balance out the positive and negative views. However it is also far easier to be caught up in the idea that, “you can achieve anything, if only you put your mind to it!”
And it is an admirable sentiment, for sure. But how many of us can truly say that we have never faced a challenge that we simply couldn’t fix on our own? We all have areas we struggle with, times when we fall to our knees and need a helping hand. Whether it’s financial, relational, physical, or emotional, we all have our battles. And yet, because of this ideology that we should be able to cope on our own, we suffer in silence and expect others to do the same.
the benefit system exists for a reason
In 1942, William Beveridge published “Social Insurance and Allied Services” (known as the Beveridge Report), which set the stage for the post-War Welfare State. I’ve recently been rewatching Call The Midwife , and have been struck by the huge difference the Welfare State made in those post-war years and the decades that followed.
Social housing enabled so many families to move out of poverty and into homes that were safe and warm. And the NHS gave families access to healthcare that was free at the point of care. As a family who struggle with multiple health issues, we are constantly grateful for the fact we still have access to see a GP or consultant without worrying about financing such care.
It bothers me greatly that the NHS is being failed so badly by our government, to the point where its future is so uncertain. Just as the high levels of homelessness and families struggling to afford their rent worry me. I find it so difficult to understand how we have found ourselves in this place, where even working families are struggling to survive financially, and those who need support often aren’t able to access it.
we need to change the way we think about the world
And yet there’s a part of me that knows exactly how we got here. Looking back over the past 20 years, which is pretty much my teens and adult life, I can see just how often I was taught to believe it was possible to live a good life by working hard and being “responsible”.
I grew up with the belief that there were enough jobs to go around, and that you could easily keep a roof over your head and food on your table. So imagine my surprise when I graduated from university in 2006, struggled to get a job, and could barely afford rent even in a house share. The financial crisis in 2008, and the austerity measures that have damaged so many in our country have only made things worse. And yet we continue to cling to this idea that if only people tried harder, they would not need support.
Which is why I felt compelled to write our story, to show that those of us seeking support from the benefit system have not only worked unbelievably hard to stay out of a system that is downright cruel, we are also having to deal with the most awful treatment within it.
our story as a family with two disabled parents
Let me start by giving you a basic overview of the situation we currently find ourselves in, and why this is so important to me.
I’m Amanda, a 33 year old graduate and freelancer. My current health diagnoses include: Fibromyalgia; Endometriosis; Joint Hypermobility Syndrome; and Postural Hypotension. I also suffer from chronic migraines that can last for days, IBS, and eczema.
Tim is my husband. He is 36 and his current diagnoses include: Small Fibre Neuropathy, Fatty Liver, and Depression and Anxiety.
Our son is 6 years old and was recently diagnosed with Autism.
Tim and I are both currently out of work for health reasons. This is not something we chose – we have both tried incredibly hard to stay within work:
- Over the past 10 years I have worked in numerous positions including: childcare; student support; tourism; PA; volunteer management; sales; and most recently as a freelance copywriter and VA. I even did a short stint as a dinnerlady whilst suffering from Hyperemesis Gravidarum during my pregnancy – if that isn’t a sign of how hard I have tried to work whilst suffering from debilitating symptoms then I don’t know what is!
- Over the same 10 year period Tim has had 3 different careers – plumber, healthcare assistant, and admin assistant. He left plumbing when the pain in his hands and wrists became too much to continue in that line of work. He retrained as a healthcare assistant and worked in hospitals for almost 5 years before moving into an office based environment. This second career change came about because the shift work began to become too difficult to manage with his developing symptoms of Small Fibre Neuropathy. Unfortunately, despite multiple adjustments made at work, he lost his job last Summer due to the severity of his symptoms and the number of absences he had as a result.
As you can hopefully see from this, Tim and I have worked immeasurably hard over the years to remain in work. In fact, when I had to leave my final place of employment after 6 months of sick leave at the beginning of 2017, I set up my own business (Shortman Media) in an attempt to continue working around my health conditions.
I was determined to avoid having to apply for ESA, and had hoped to build up the business enough to eventually bring Tim on board as well. We knew his days were numbered in traditional employment and I wanted to find a way for us to continue to “pay our own way”. But the reality is that both of us are simply too ill right now to do that.
Since the beginning of 2018 I have barely left the house, other than to occasionally take our son to school. Some days I barely leave my bed, because the pain and fatigue and nausea is so bad. If Tim didn’t bring me food and drink I don’t know what I would do, because on my bad days I cannot cope with the stairs down to the kitchen. Even on good days I often have to go up on all fours because of the pain and instability in my hips and pelvis.
And whilst Tim is faring slightly better than I am, he is still struggling immensely. There are days when he wakes up vomiting from a combination of the pain and anxiety. There are days when the pain is so bad he can barely move, and he regularly cuts and burns himself due to sensory issues with his hands. And there are days when he cannot stop crying because of the awful situation we find ourselves in, and the battle we are facing simply to get the most basic of support.
We are doing our absolute best to support each other and keep our little family safe and emotionally stable throughout one of the hardest periods of our lives, but it is so hard. We are not new to this, we’ve been living with health issues for years. It’s just, right now, we need support to help us to rest, recover, and get back on track. But the very process of trying to get that support is actually making us more sick…
the benefit system is damaging those who are most in need
At present, we are surviving on a combination of ESA (for me), Child Tax Credits, Child Benefits, Housing Benefit, and Council Tax Reduction. Even with the best of budgeting intentions, this isn’t enough to make ends meet. Our rent alone is £540 per month (and due to go up to £555 next month) for a privately rented house that has had two major leaks within two years (I’m talking damage that required a whole new wall and ceiling, leaving us living in damp conditions whilst waiting for repairs!)
Thankfully I was put into the Support Group for ESA. But I was denied PIP last year. I could have taken it to appeal, but I was experiencing migraines that lasted for 10 days at a time, so I simply wasn’t well enough to do that within the month given. I have just reapplied, on the advice of Citizens Advice Bureau (CAB), but I thoroughly expect to have to go to appeal. They simply don’t accept how sick I am.
Tim, however, was denied ESA completely as the DWP found him “fit for work”. The decision letter actually states that they do not question that he is ill, but they see no reason why he could not find a job in a “modern office environment with reasonable adjustments.”
Now this, in itself, doesn’t sound that unreasonable, does it? But the fact of the matter is that Tim previously worked in a “modern office environment” and made all sorts of “reasonable adjustments” including specialised equipment and reducing his hours, but it still wasn’t enough to help him keep hold of that job. He was dismissed due to a high level of absence caused by his health conditions.
The DWP knows that he previously worked in an office environment and lost his job for health reasons less than a year ago. So the logic that says he should somehow be able to secure another job and miraculously find an adjustment that he missed in his last workplace is massively flawed. And yet that’s where we find ourselves.
On top of all of this, Tim has had the mobility aspect of PIP which he has been receiving for the past 3 years taken off him, despite the fact he is more ill now than he was 3 years ago when he was first assessed. How does that make sense?
This past week I have had to fill in his ESA appeal form and the mandatory reconsideration form for his PIP because the whole thing was too stressful for him. And when I say stressful, I mean I am seriously worried about his mental health and he’s due to see the GP again tomorrow.
Now here is where it gets hard for me, because in order to show you how damaging this system is, I have to share some of the darkest moments of our life. You see, over the past 3 years, Tim has had a couple of suicidal episodes. Twice I have had to try my absolute hardest to talk him down from the most harrowing place, trying to somehow get through to him that the world would not be better off without him. Because that’s honestly how he feels. There was also a time when he walked out of the house and I had absolutely no idea whether he was going to come back or not.
This is the level of depression and anxiety that he lives with, and yet despite being told this on numerous occasions the DWP seem to believe that he only suffers from “mild depression” and that finding him “fit for work” won’t have any serious implication to his health. To that I respond bullshit. There is no other way of saying it. If you can listen to a couple share experiences of suicidal episodes and then find that person to only be suffering from “mild” depression, then there is something deeply wrong with the system!
The DWP makes arbitrary decisions based on a flawed system
If you’ve never had to apply for either ESA or PIP then you probably have no idea how the system even works. So I want to give you a little bit of background. I’m going to focus specifically on PIP for this, but the ESA system has many similarities.
To start with, you have to call a number to start your claim. This is hugely terrifying for some people, and the process hasn’t even begun yet.
Then, you get sent a ridiculously long booklet you have to fill in (for PIP it is 15 questions) and you only have a few weeks to do it in. For people who are struggling healthwise, this is a mammoth task that is both exhausting and dehumanising.
The next step is a face-to-face assessment. This is carried out by someone with previous healthcare experience, but is basically a case of someone asking you a series of questions and typing the information that they feel is relevant onto a laptop.
But here’s the shocking part – the person who carries out the assessment and actually sees you in person is not the person who makes the decision regarding your claim. That is carried out by a “decision maker”, who may have absolutely no medical training whatsoever, and who has never met you.
the points based system fails to capture a range of conditions
The worst part of it all is that the system is set up to try and ensure as few people as possible are eligible for support. Just a cursory glance at the PIP descriptors shows how hard it is to qualify for even the most basic support (which requires you to score at least 8 points in either the daily living or mobility section).
Even though the DWP’s own guidance now states that these activities needs to be done reliably and to an acceptable standard, this is still open to huge interpretation. From what I have read, the term “reliably” should cover people like us who can do the activities, but doing so causes immense pain or fatigue, or takes us more than twice as long as somebody else. But my experience is that this isn’t always the case…
For instance, both my own refusal last year and Tim’s this year have stated that we do certain things (such as going to church and doing the school run) as proof that we are okay. Yet we have made it clear time and again that we have to rest for hours after the school run, and that doing so is incredibly painful.
We’ve also had our medications used against us. According to the DWP, I can’t possibly be in as much pain as I say I am because I do not take prescription painkillers that a lot of people with my conditions do. Except I told them I don’t take them as they make me too sick, and my Rheumatologist advised me not to take them. Tim received the same message, that he could only possibly be in “moderate pain”, despite taking the maximum doses of Pregablin and Tramadol, and having had to stop taking Amitriptyline and Oromorph due to side effects.
mental health is treated in the most appalling way
When it comes to the mental health side of things it gets even worse. The DWP seems to have absolutely no understanding of mental health, nor the severe impact that the system causes to those who are already suffering.
As I mentioned above, Tim is considered by them to have only “mild depression”, despite previous suicidal episodes and severe distress at present. This is because he was able to talk to the assessor and because he is only on a mild dose of antidepressants (again, because of negative side effects). I find this the most shocking of all, I think, and certainly the most distressing. Because I am the one trying to console my husband as he despairs at the state we are in and how much it feels like the world is against us.
I am actually generally a very positive person, I have my own periods of despair but my faith and natural optimism get me through most things. But even I am struggling mentally and emotionally with the burden we are facing right now, and the stigma that comes with the position we find ourselves in.
Nobody wants to be reliant on benefits. Nobody wants to have to spend every day worrying about how they’ll make ends meet and whether they’ll ever feel well again. And nobody ever wants to be treated like a second class citizen (which is putting it nicely).
I fear for the mental health of my husband right now. I fear that a day will come when it will all become just too much. And I feel guilty that there is absolutely nothing I can do to help him, because I’m too ill to fight the way we need to just to access the most basic of support. And nobody should ever have to feel guilty for needing support.
so let’s change the conversation, let’s support those in need…
If any of what I have written above has moved you in any way, please consider sharing this post with your friends and family. Let’s get the conversation started about the true cost of the benefit system in our country.
Let’s tackle the ongoing narrative that benefit fraud is a big problem and the current system is fair, because it isn’t. This brilliant article from The Huffington Post is a few years old now, but it is a great overview of how small benefit fraud is compared to other things such as tax fraud. It also shows how benefit fraud costs us less than 1% of the total cost of benefits and pensions. How have we blown it so out of proportion?
Well, a lot of it is due to the constant obsession with eliminating the budget deficit, which is actually harming our country. I’m not going to go into this in detail now, as there are people who understand it and can explain it far better than I can. To get you started, check out this brilliant article by The Guardian.
I feel like there is so much more I could say, but all I really wanted to do was to get the conversation started. My husband and I are currently in the heart of battle with this cruel system, and I won’t stop fighting until those in need start to get the support they deserve. Because it’s not just about us as individuals, it’s about us as a society. And I, for one, hope to build a kinder society for my child to grow up in!
help and support for claiming benefits
If you’re trying to access benefits, or want to know what help you may be able to access, please try some of the following places:
Laura WilsonMarch 15, 2018 at 8:54 pm
Thank you for sharing this brave and brilliant post. I hope it gets shared far and wide and people can see what it’s truly like to be living like this. I’m so thankful Adam is fit and healthy still and able to work as I can only imagine how hard this is for you guys and so undeserved. We had a few months when we were both suddenly out of work and it was so hard, I sat in tears while I was ridiculed in the job centre with a baby in my arms and bad pnd. I never want to be in that position again especially now as we’d be homeless for sure. I have hypermobility in my joints too with the hips and pelvis being worse, severe anxiety and arthritis and it’s a nightmare to live with without all the added bits you have and a poorly husband too, I can’t even imagine and I’m so so sorry that you have to go through the and that the system is failing you so badly. I’ve been low like Tim previously too and the support just isn’t there and like you say just picking up the phone can be a huge factor for some people. I’ve rabbited on but just wanted to say I’m always here to talk to and happy to help any way I/we can xx
AmandaMarch 15, 2018 at 9:20 pm
Thank you Laura for such a supportive comment! It is so scary putting this out there, but it’s incredible how many people are also struggling and we simply aren’t having the conversation about it. I’m sorry you’ve experienced such rough times too… pain and anxiety are so hard, especially when you’ve got young kids to run around after! Thanks again for your support – I feel so lucky to be surrounded by so many wonderful people xx
Shoestring JaneMarch 16, 2018 at 6:03 am
I come across people in your situation at work all the time. So many people doing battle with a government who only care about their balance sheets. It is cruel and inhumane. I hope you and your family get the help you need and that things start to improve for you.
AmandaMarch 16, 2018 at 8:12 am
Thank you so much! We have been told by CAB that ours is such a common experience, which is why I felt compelled to write this. It is appalling that so many people are being let down so dramatically by the system that is supposed to support them. Thanks for reading and commenting x
susand1408March 24, 2018 at 7:47 am
Thanks for your amazing post. I also gave up on Pip even though the report was full of lies. The whole assessment was just someone trying to trick me out of everything. I hope your appeals work. I would also contact your local mp for support. A lot of mp’s have made a difference. I must admit I hate the press and the government for how they treat people on benefits now. The amount of people dying over this is awful. We all need more understanding.
pinkoddyApril 2, 2018 at 9:30 am
Such a great article. I am so sorry that you are in so much pain and that the system has let you down. Indeed the same with our son with aspergers the month for tribunal came over Christmas and there was no way dealing with that time of year and doing their form was possible. Let’s hope change is a foot as too many people are suffering.
Jenny @thebrickcastleJuly 10, 2018 at 11:02 pm
You are right. I totally agree with everything in this post. We really do need to flatten this back to 10 people on an island and consider what we are doing. Would we leave the one with the bad leg to die? Would we expect the same from every person there, or would we understand that some would need some help to achieve what others found easy? The world lost humanity and replaced it with greed and scorn. I’m truly sad for you that you are in this position – thank you for writing the post.
If you didn’t already read it – Google Dear Elspeth for your husband. It would never be easier without him xx
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