Wednesday, 27 October 2010

The proposed changes to ESA will fail those with incurable illnesses

Last week major changes were announced to disability benefits as part of the Coalition's Spending Review. I didn't blog on it immediately as I wanted time to think through their implications.

The Government intends to limit Employment Support Allowance (ESA) to one year for those who are in the Working Group category. This category is for those people that are deemed able to work if they are given the right support to find a job appropriate for their disability or illness. ESA remains unlimited for those disabled people placed in the Support Group category who are deemed too ill to ever return to the work place. So in theory I guess the Government thinks that those in the Support Group are the vulnerable people it has pledged to protect, and those placed in the Working Group category would benefit from the tough love of a time-limited benefit as it would provide them with an incentive to get back into work.

On initial thought this seems reasonable. I am a person who, though I've had to grudgingly admit I've become less and less able as the years have gone on, firmly believes in the power of work. I've worked all my life since I was sixteen taking on a Sunday job through my A-levels, and part-time and holiday work during University.  Once in the work place full-time I negotiated a four-day week when five days became too tiring. Later, when even those four days became too much, I retrained as a journalist so I could freelance from home. Eventually just before my 29th birthday I realised my desire to be self-sufficient was finally over, I could no longer manage even a part-time job from home. 

So I'm writing this as a firm believer that disabled people will get more from life working than not working and that my personal ambition to work gave me a reason to be healthy and comply with my lengthy, daily medical regime. But it's also strange to write that I'm glad that, when it comes to claiming benefits, I have an illness that will kill me. I was lucky enough to be able to afford to retrain so that I could work from home since 2007. This meant that when I finally had to stop working my lung function statistics had dropped so low it was impossible to dispute how serious my illness has now become and that my death will be a direct result of having Cystic Fibrosis (unless of course I get run over by a bus!). Because when I finally had to turn to the State and ask for help, that help was there for me.

But the proposed changes to the ESA system will not work for those with long-term ill health and incurable illnesses because it creates a health-lottery, even between people with the same illness, as to who will get life-time financial support on ESA and who will miss out.

Someone who is eligible for ESA will receive the payment either based on his or her National Insurance contributions or, if they haven’t contributed enough NI, on their income if it’s deemed low enough. The change the Government has outlined in the Spending Review is to time limit how long disabled claimants can claim contributions-based ESA. This ESA change is modelled on Job Seeker's Allowance. With that you are allowed six months of contributions-based JSA before being moved onto income-based JSA. This means that if you live with a partner who is in work or if you have savings over £16,000 then you will not receive any JSA at all. This rule has now been applied to ESA claimants in the Work Group, but with claimants allowed a full year of contribution-based ESA.

As more details haven’t yet been published on the criteria used to assess when someone will be eligible for more contributions-based ESA after their first initial year has expired, I can only presume that the rules on whether you’ve made enough National Insurance contributions to qualify for ESA are the same as for JSA. With the latter, the Government looks at the last two tax years of your National Insurance contributions to see if you qualify for contribution-based JSA. You need to have been in work for that period, earning more than £97 a week, and “generally, self-employed contributions will not help you qualify for contribution-based Jobseeker’s Allowance”.

But this change to ESA has created a massive loophole for those with long-term illnesses. I’ll take Cystic Fibrosis (CF) as an example as I know the illness so well. It presents itself with differing severity depending on the patient. Some lucky few can work into their forties, some die in their early twenties. But it’s a fluctuating illness meaning that overall although someone with CF won’t get better they might be very ill for a few months or a year and then go on to experience a more stable pattern of illness. So it's feasible that someone with CF who is in work will have to stop working as their illness has taken a turn for the worse, and be put on ESA in the Working Group category - although their health is bad it may be conceivable they could work again if they are young enough and their lung disease not too severe.

After a year spent on ESA they will be forced back into the work place, where after a few months working they may find their health has worsened again, proving to themselves and their doctors that, if they wish for any stability in their health, then their body is no longer strong enough to maintain a job.

So what happens then? They’ve used up their contributions-based ESA in their initial year of ill health but haven’t been able to work for long enough to build up their NI contributions to be entitled to claim contributions-based ESA again. This means that they effectively miss out on years of ESA payments because they had the wrong severity of illness at the wrong time of their life. So it is feasible you could have two people with CF, both unable to work over a five-year period, but one who can claim £24,960 (based on five years on contribution-based ESA in the Support Group) and one who can only claim £4,732 (based on one year contribution-based ESA in the Working Group). This gap in benefit received would just carry on widening the longer each one lived.

It seems to me that the Government is asking people with incurable illnesses to work themselves to sheer exhaustion, and possible irreversible poor health, before claiming ESA, as it seems contributions-based ESA can’t be claimed twice in a two-year period. So if you do put in a claim for ESA you’ve got to do so in the knowledge that either you’re so ill you’ll be put in the support category immediately or be confident that after a year off you can resume working for a lengthy period of time.

The ongoing furore over the controversial Working Capability Assessment test used to decide eligibility for ESA has proven that the Government cannot understand and respond to the fluctuating nature of serious, incurable illnesses, and this change to ESA just reiterates that.

Unfortunately uncertainty is the ruling factor of an incurable illness. People with such illnesses have to have the strength to get out of bed every day and plan a life with an illness that they know will one day kill them or make them severely disabled - they are just not sure when. These are the very vulnerable people the Government has pledged to protect, but instead they are introducing even greater financial uncertainty into their life and an unfair system that will offer a lifetime's support to some disabled people who have a history of working and yet not to others with exactly the same health-problem.


  1. Well said, Sharon.

    Ultimately, though, there's a BIG clue in the naming of "EMPLOYMENT and Support Allowance". The emphasis is on getting people back to work - the sooner the better, regardles of consequences to their health.

  2. I do agree in some parts id like to explain my position.Worked all my life had severe polio as a child in iorn lung for two months leg iorns on my left leg until eleven yrs old put through gruelling exercise as a child.Left hand side of body paralysed mother never excepted disability.Worked in the coal mines for thirteen years on coal faces 15 inches high done manual work all my life.Two years ago diagnosed with a brain tumor and did not realise post polio syndrome comming back to haunt me affecting my whole body brain tumor inoprable radiotherapy to stop it growing cannot get a firm diagnosis as biopsy impossible.Suffering every day been taken out of the support group twice just won tribunal to go back into support group after eight months of fighting noe exhausted.Just recieved letter got to go for another medical and fill esa50 in havent even recieved my back money yet.I think you are living in a rose colured world suffering is or was a every day thing for me having to bring up two boys and a great wife who is now supporting me as she works and cares for me this govt and all councillors are worse than adolf hitler and should be tried for crimes to humanity and when i die i am going to ask god if i can haunt the lot of them and take there money away and let them suffer for a life time.

  3. the government is spending millions if not billions on war!! but making cuts in the wrong places!! im 46. working since left school. worked my way up to becoming a legal executive. studying in the evenings and working during the day. Never claimed until 2 years ago when i was diagnosed with sarcoidosis. if you dont know what it is check it out. believe it or not, even the medical industry does not have a clue. essentially it affects the lungs, joints, muscles, bones, memory loss, loss of concentration, depression, fever etc.

    I am a ghost of my former self. My body feels like that of an 80 year old. but i am put in the work related activity group. the system sucks. governments are run by private educated and spoon fed pricks!!!

  4. I have worked all my life, now have cervical spondylosis with radiculopoty and mylopathy, just had a triple discetomy and now been told today my esa ending in april Forgot to add i also have severe depression, so now i have to look for a job, am so so scared as i know i am not capable of fulfilling properly a job, this would also be unfair to anyone who employs me. But i have no choice as my husband does not earn enough to support us. We have a very quiet lifetyle, dont drink or smoke, dont go out. We take one holiday a year, a very cheap holiday, so we face being homeless, and i hope slasher cameron can sleep at night because i cant.

    1. Dear Anonymous, I'd love to talk to you further about your post to my blog about losing ESA. Possibly doing a piece for a national paper on disabled employment and your experience would be invaluable. Please do get in touch!

  5. i agree, im a carer for my wife who has cystic fibrosis, and this highlights our concern,...she has been told she is in the work support group, even though it was initially the hospital who signed her off of work, regarding her bad health,... im worried because this means i have two routes,... i either scrap benefits all together and find a full time night shift job so i can help her with the day to day tasks and earn and run myself into a hole,... or appeal the decision which is a long task in its self,.. im stumped i really am.

    1. Dean, if you like send me your email address. I think your situation might not be as bad as you think... you certainly can't work nights as you need to care for yourself too. My initial thoughts are contact the CF Trust to see if they can give you benefit advice. Also some hospitals have a welfare advisor so get your wife to ask for an appointment if you can. Secondly you need to find out if you wife gets income related or contribution based ESA, it makes a big difference to how long you can claim for. And once all the above is in process then please please do appeal, you need to have the right support in place as her health worsens so you can concentrate on keeping you and your wife as healthy as possible.