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Disabled people four times worse off financially

22 Jul 2019

Disabled people are 4 times worse off financially than non-disabled people, according to new research commissioned by the Disability Benefit Consortium (DBC).

The study found that while people who receive welfare support have experienced cuts averaging £300, disabled people are typically £1,200 out of pocket annually.

The research was the first study looking specifically at the impact of welfare changes on disabled people over the last 10 years, and found:

  • The more disabilities you have the more you lose out. Someone who has 6 or more disabilities loses more than £2,100 each year on average, whereas someone with one disability loses around £700 each year.
  • Households with one disabled adult and one disabled child lose out the most, with average losses of more than £4,300 every yearThe study forms the basis of the report ‘‘Has welfare become unfair - the impact of changes on disabled people”.

The report was put together by the DBC, a coalition of more than 80 UK disability organisations, including Epilepsy Action.

As part of the research, 50 people living with a variety of conditions and disabilities were interviewed about their experiences. Respondents said that they found the application and assessment processes highly stressful, and that they did not feel trusted. They also said that they felt constantly challenged throughout the process.

The DBC states that the current system has become overly complex and dysfunctional. The consortium said that many disabled people have found it has had a devastating impact on their wider health and wellbeing.

The consortium is calling on the Government to make urgent improvements to the welfare system to ensure it works for everyone.

Read the full DBC report

Comments: read the 8 comments or add yours

Comments

The fight for benefits for my son has been so stressful I don't think he will ever be the same. He has a few problems and has been treated badly by so many people. He has no confidence/self worth left.

Submitted by Linda Edwards on

Only recently been diagnosed so have been on SSP. Reading up about benefits I believe you have got to have less than £15000 in savings between you and your spouse. I'm now living off my savings while trying to find a job locally as I had to surrender my driving licence which had HGV entitlement which was what I have been doing as a job for the last 35 years.

Submitted by DAVE CANHAM on

I went to my P.I.P assessment and recieved it back saying i only get mobility and not daily living so i send off for a mandatory reconsideration and was told again that i only get mobility and not daily living so now i have to go to a tribunal because the assessor basically said that there is nothing wrong with me even though i have Life Threatening Epilepsy.

Submitted by Wayne hood on

hi I am writing to you today the welfare benefit system not just for people with epilepsy but other conditions needs to be address and improve and made easier asap its a disgrace we are not listened too .I have made myself so poorly always having been asked the same questions and being told I can not and don't need help ive always been bullied because of my condition and I had to give up work because my sickness record was so bad.Also I have had friends this year who have took there own lives because they didn't help the true care and support and help they deserve .How many more people and friends are we going to lose this needs to be dealt with you just don't understand us what people are going through and there familes and careers we need to be help like any other person please help us thank you from Yvonne cook .

Submitted by yvonne Cook on

Hi there. Like the other comments I have been reduced to mobility only. Having spent forever, stressfully, filling in the form trying to explain that I am capable of most things UNTIL like a lot of people with epilepsy I cannot do anything at all when I have a fit, don't know who I am, how to get help, what has happened, usually am bleeding from some kind of fall wound. Thing is although I hate to say it I need someone there all the time as there is no sign of an oncoming fit. PIP decided that I was quite capable of living on my own and managing, which I am UNTIL I HAVE A FIT. They completely stopped the care allowance so now I cannot pay someone to help me and was made to feel like a fraud. I do have the full mobility because, they say I am unable to travel on my own. Blessings for small mercies I suppose!!! Luckily I have a friendly and quite reasonable taxi driver who is not terrified by epilepsy.

Submitted by Carole Gallagher on

I'm sure that I am only one of many with epilepsy (mine is uncontrolled temporal lobe with complex partial seizures) who, when asked to apply for Personal Independence Payment did so. Obviously I filled in the form honestly and stated that I could keep myself clean (I have an over the bath shower and a seat in the bath) plus I can take myself to the toilet, so consequently this 'caring, sharing Government' decided that I did not qualify for PIP and that neither did I qualify for the Disability Living Allowance which I was receiving and so they stopped it! I lost just over £200 per month as I was only on the middle rate but a lot of my income is spent on taxi fares to take me shopping safely. Two years ago I had a major seizure in a shop and fell badly and ended up with a fractured skull and almost died. In fact the doctors sent for my daughters to come and say goodbye to me as they didn't think I would pull through. Thankfully I did, but I am disgusted that I and others like me cannot get what I feel we are entitled to. I wonder how they'd like to live with this condition? I'll certainly change places with them if they'd like to try it. I've suffered with this since I was 21 and I'm now 69 so I can't see it leaving me any time soon!

Submitted by Barbara Smith on

I have been an epileptic "on and off" between the age of 3 1/2 and 7 years. and then the condition re-appeared, totally out of the blue in 1999, with a major, life threatening seizure at work. Something I still believe was as a result of stress my employer was putting me at the time.

I had a second seizure, this time home a month later which my Neurologist as delayed shock to the sheer size of the first one. I was seizure free for a year, when suddenly I took another seizure, this time at another office. In the meantime the previous employer had "Constructively Dismissed" me (I received an out of Court Settlement).

Due to the loss of my driving license, they reneged on a promise I could from a sister office which I could easily get to by Public Transport, and frankly could not get me out of the door fast enough. In fact I was deemed too much of a risk if I was going to have seisures all the time.

A year later (and there is an odd pattern to the seisures after that in that they were about a year apart in the September - January time frame. Each with a different trigger, no common cause found even with CT, EEG etc. nothing found wrong as such. The vaguest link was sugar overload and shortage (but not linked to diabetes), but they were the only two events; and the fact that these incidents were in the September- January time frame.

I am very much of the opinion that the first very large, near fatal sesisure was a direct result of stress (indeed the found a very high level of the hormone "serratonin") I was under at the time.

As I mention after the second attack, although it was at home, the company could not get me out of the door fast enough.

What is interesting is that I have been freelancing (not through choice) since then and have taken several attacks in the work place. One common thread I have noticed is that the assignments where I took an attack on the premises, the contract was suddenly terminated may be a few days later. This was despite the fact that there was clearly enough work to do.

Really what it came /comes down to is employers fear of the condition and I know that a convulsive seizure is not pleasant to witness, equally with the exception of one client, the others couldn't get me out of the door fast enough !

I have a severe memory issues (rapid recall) and indeed I get lost and disorientated very easily in places I have not been before; and that includes within buildings, for example where my desk is sited. I also do not have a reflex, short term memory in the sense that I can't be just shown something once on say a computing suite which requires several function to be carried out to get to the result; or even the screen you need to see.

Neither can I remember a list, for example a food order for more than two people (if that) or a shopping list, to mention two scenarios. I can also get lost (disorientated) easily in places I don't even forget where I have parked a car in particular a town or area I don't know. I usually have to write down where I have left the car and get directions back.

Indeed the best thing that has come out for me over the last 5 years is GPS, as I can tag on the computer my "point of last stop", and then if go back to find the car or get lost in the process, I can switch on the GPS and it will provide the name of the road I last stopped. From there I can reprogram the GPS to get me back where I was parked. OK I can't use short cuts and foot paths but at least I can find the car.

People take memory very much for granted, and although long term memory is expected to fade, short and medium term memory are not. Indeed you are classified an idiot if you can't remember.

In part this is due to the computerised age, in that to a large degree the computer now controls the way humans live, not, as it was intended, to be a tool for work. Many companies advertising for jobs insist that you MUST not XYZ computing suite. Which brings us back the lack of interest employers have in training.

Since absence and co-ordinational epilepsy is not a physical condition, like an amputee, or the loss of vision, hearing etc. it tend to be treated as the person being a fool, and as above meaning that certain jobs are out of the question. Getting employer to accept epilepsy is a real challenge.

Ironically one employer I worked for was a respite and care home for epileptics, but also expected me to find my way around a very large building in huge grounds near immediately. This was despite the fact that they were made aware of my epilepsy at the very beginning. Like the other employers as soon as they realised I cannot learn spontaneously (although I had told them !), couldn't get me out of the door fast enough. - That is a religious charity for you -:)

There are a lot of things I can't do for safety reasons, but equally there are alternatives if people would allow for the fact that I do have this learning disorder (in the narrow sense of the phrase), but basically don't want to sit with you and train and accept that I don't learn as fast as others.

What is ironic about the home which I did a work trial at, one of the reasons they told me that I was unsuitable as I was being disruptive during training. Quite how asking question or requesting clarification of something stated in a classroom environment, particularly from someone who had not worked in that care sector before, baffles me.

Isn't that what training sessions are there for; to learn and understand by raising questions. It is not as if I was talking over the presenter, but was raising my hand as one would and wait to be invited to aske the question. Again this is within a supposed charitable, religious organisation.

The above shows just how deep rooted this prejudice against those with the less visible sides of epilepsy can be.

It is serious since our travel system is very expensive and if there is no public transport to where you need, there is a real problem. Although I used to get a discount on my travel, and indeed my local Council provide free travel for epileptics, and 1/3 or rail travel. However the actual communication system in the UK is "hub-based" that is to say to change direction from East to North or South to West and even East to West means you have to go via a terminus or interchange.

London, Manchester and Birmingham, along with Leeds, Cardiff probably the busiest and most complex; not to mention expensive. With this lack of ability to move efficiently cuts down the area an epileptic, indeed any person without private transport can work.

Employers and indeed employment Agencies have a very poor attitude to those with learning issues such that epilepsy produces. The Disability Discrimination, and Mental Health Acts are fine in theory, but enforcement in practical terms non existent.

Submitted by Christopher Wil... on

My daughter has very complex learning disabilities and Lennox Gastaut syndrome with between 100 - 200 seizures a month.

Over the last 10 years, I have had to reapply for DLA and ESA for her, and no doubt will have to, when she migrates to PIP - I find it ludicrous that I have had to spend 2 days filling these forms in, while trying to look after somebody with a life threatening condition 24/7, when there is no known cure for her congenital brain abnormality nor severe, poorly controlled epilepsy!

She now lives in a specialist epilepsy centre, funded by Continuing Healthcare Funding - she has 1:1 care, and is under supervision 24/7, with bed/auditory/visual monitors at night, linked to an office with night staff.

When I wrote to the DWP to inform them that she had moved to the specialist epilepsy centre, without telling me, they stopped the DLA mobility and paying Motability. Seven months later, Motability demanded the car back - the first I knew of it! When I asked the DWP why they had not informed me, they insisted she was living in a hospital (when she's not, she's in a residential care home for 6 people). I asked them under what law specifically - they told me to look it up myself! I did and found a case from the Court of Appeal, which said that even if people with learning disabilities are funded by CHC; if they are looked after by residential care workers and NOT nurses, then they are still entitled to DLA Mobility to help them get about, just like "normal" young people of their age. When I pointed out this case to the DWP, they agreed it changed everything and decided that as she only gets care from a nurse, as and when she needs it, just like "normal" people, she could have her DLA mobility, and they paid the arrears to Motability!

I should not have to research the law on the internet to point out to the DWP, what the law says! Their attitude was stop paying the benefits first, and look at the facts months later - which shows in my opinion, the real agenda!

Submitted by Susan Lyons on
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