Health and Disability · Invisible illnesses

Benefit fraud and the effects on the perception of invisible illnesses

OMG!!! No wonder people are complaining about benefit cheats and fake sickness claimants and people with #invisibleillnesses get abuse!

I’m watching Benefit Britain: life on the dole and the tone of the narrator is horrific! “She has fibromyalgia which she CLAIMS causes severe pain” he also uses the same sarcastic tone for a woman who suffers from severe migraines! 

These women are on the top rate of benefits which means they’ve had to fill out very complicated forms that don’t even ask questions that mean that the answers you give fit the criteria. They are so confusing! They then have to go to an assessment where a health professional asks more questions and physically assesses them. They also have to have proof in the form of letters from consultants, GP’s, lists of medications and current treatments that get reviewed by the DWP, the assessor and then the decision makers.

Qualifying for sickness benefits is really difficult, it is challenging both mentally and physically. It is humiliating and intrusive and never ends as you have to be reassessed regularly and live with the worry that your benefits could be reduced or stopped at any time. You are doing all of this whilst also living with your disability and trying to manage your health and life. Would you go through this if you weren’t actually ill?

These figures show that benefit fraud is actually less than 1% of all benefit spend and less than benefits that have been over/under paid in error!!!

But the media continues to create and show these programmes that paint benefit claimants in a negative light, and the public continue to watch them and believe that this is a huge problem for the country. Benefit fraud is a problem, and it is wrong. It costs the tax payer £1.2 billion a year!! This is a huge figure and you can report fraud here but if we look at it in context then it’s such a small problem compared to tax fraud which is £14 billion a year!!!! Central government fraud is £2.5 billion and local government fraud is £2.2 billion! All much bigger problems than benefit fraud, but do we hear about this as much? (Figures from

“The Guardian says as many as 3,600 people work in the DWP investigating abuses of the benefit system, while 700 work in the two units at HMRC that deal with the richest taxpayers.” (From which argues that Labour want more focus put onto other types of fraud, whereas the government is focused on recouping benefit fraud which involves much smaller numbers. This isn’t what I’d be focused on if I was losing money…I’d be looking for the bigger amounts that were being defrauded from me or my business.
During the programme the only person who doesn’t get the sarcasm and incredulity is the 54 year old man who has worked all of his life and isn’t happy being on benefits…even though all of the other people in the programme state that they want to find work and get off benefits, but the people with health problems (fibro and migraines) don’t think that they’ll be able to work again. 

People thinking that those of us with invisible illnesses are faking and misusing the benefits system makes life harder for us all. It’s compounded by these programmes and people who do actually abuse the system. I heard about blue badges being sold for £300 yesterday and got so angry!!! This is utterly disgusting! Again getting a blue badge in the first place is a challenge, we don’t go through that for a laugh! It’s to make life easier for those of us who find walking difficult. It’s to help parents with disabled kids get them in and out of cars easier. It’s to enable people with wheelchairs and scooters to have the space to get them in and out of the car. This isn’t fun. This isn’t a bonus. This is a necessity. Just because someone doesn’t have a visible physical disability it doesn’t mean that they don’t need to park closer to where they are going. Sometimes having a physical disability doesn’t even mean that you need a blue badge or benefits! Everyone is different. If there are no free disabled spaces where I am going it makes life much more difficult for me. The extra steps and energy have an impact on the rest of my day and restrict what else I can do. Until you have to choose between walking to the chemist section of your local co-op and having a shower you have no idea what it’s like to manage your energy in this way, and every extra step, lift of something, chat to someone, drive somewhere etc etc etc limits what else you can do not just today, but tomorrow and onwards for weeks, months and even years. Just pause a minute and think about that.

I’d love people to assume that those of us with both visible and invisible disabilities and illnesses are being truthful. That their first thought is one of compassion rather than judgment and mistrust. I love talking to people about my health, the realities of my life, my limitations and the changes that I’ve had to make, but not everyone else does, and we shouldn’t have to. Imagaine having to justify yourself  to people constantly just because you don’t look sick?

I personally believe that the current system is wrong. It’s not fit for purpose and people with serious health problems are “failing” the health assessments and not getting the support that they need to be able to live an independent life with a sense of self respect and dignity. People are terrified of loosing the money that they currently get and don’t challenge or reapply if they are turned down as they don’t want to have to go through the stress, anxiety and challenges of the forms, assessments the waiting and chasing things up again. 

Just going through the process myself has shown me that the forms and questions need to be reviewed so that people are able to complete them in a way that answers the criteria that the DWP are looking for. The points system needs to be adjusted for variable conditions. Having an illness that can be different from day to day doesn’t fit with the criteria and is difficult for the DWP assessors to link in to the points system that they have to work with. There are charities and websites that can help with this, but surely this shouldn’t be necessary? You’d think that if you get sick and need to claim benefits you’d be able to do it without having to go to an external agency to explain the forms, the points and the entire system? 

I’m pretty bright, well I used to be ;), I worked in welfare to work and had help from an occupational therapist and a physio when I filled out my first PIP claim form and I was turned down. All three of us thought that I met the criteria for the lower rate of care and mobility (I’d looked them up online as they’re not included with the forms) but I didn’t even get a health assessment, I was turned down flat. I asked for a reconsideration and was turned down again, without a health assessment. I then went to see disability north and was advised to ask for 2 extra points for care and forget about the mobility section as my condition was so variable it was difficult to explain and I might not fit the % of time affected that you need to qualify. So I asked for a tribunal and after 2.5 hours of being interrogated by a judge, doctor and care professional I was awarded the 2 extra points and got the lower rate of care of PIP. This took me 18 months, lots of stress and the tribunal was utterly humiliating. By this time my condition had deteriorated and looking at the points I would fit the higher rates for both, but I’d have to put in a new claim if I wanted them to look at me as I was then and loose the previous claim and any backdated money I’d be awarded, so I didn’t bother. I couldn’t face the thought of starting all over again! I’d had to reduce my hours at work and needed some extra money to support me staying in my own home and helping with alternative therapies and other expenses that come with being disabled. If this is what it takes me, then what about the more vulnerable in society? What about the people who don’t get any help and support? What about the people who can’t fill out the forms, who don’t understand the criteria or who can’t cope with the nightmare of challenging it all? Claiming health benefits should not be such an absolute nightmare! 

I believe that benefits should not be handed out unrestricted and I believe that there should be an assessment and reassessments done regularly, but surely we can come up with a system that challenges those who may take advantage as well as supporting those who are in a point in their lives where they need financial support?

I look forward to living in a society where invisible illnesses are accepted, talked about and not judged. A society where we are just nice to each other and don’t assume that everyone is a fraud, a faker or a benefit cheat, so I’m going to keep on talking about the realities of living with an invisible illness, or 3 ;), and promoting acceptance and understanding.

Please share if you feel the same and tell me your experiences.

Vic xx

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