Tag Archives: welfare benefits


I had a bit of a meltdown this morning.  Not huge, but enough to make my stomach so knotted I can’t even contemplate eating lunch.  It was bound to happen, eventually, because I’ve had enough stress just recently to sink a ship but it still kind’ve came out of the blue.

Here in the UK we have welfare benefits for disabled people, ie those who have mobility issues or need help with bathing, dressing and/or feeding.  The money is hard to come by and usually only given for a limited period before being reviewed, but as I have a brain injury, 2 genetic diseases which are never going to get better, and one acquired disease which after 26 years obviously isn’t going anywhere, I have an indefinite award.  They’re as rare as hen’s teeth.

We have a scheme whereby if you have the higher mobility component of disability benefits it entitles you to a “blue badge”, which means you can park in restricted areas such as double yellow lines so that you’re closer to shops, doctors etc.  I have a blue badge and it has to be renewed every 3 years.

Mine runs out in January, so I applied online last week to have it renewed.  You have to send all sorts of paperwork, ie photo ID, a recent utility bill and a copy of your disability benefit award letter dated from the past 12 months.  However, I have an indefinite award and already had a scanned copy of my letter from 2016 on my laptop so I sent that.

This morning I received an email saying they couldn’t send me my blue badge because I hadn’t sent a copy of my benefit award from this year.  I email back it was an indefinite award and wasn’t that good enough?  The reply was no, it wasn’t.  I burst into tears.  It was simply the straw that broke the camel’s back and I don’t have the resources to deal with it today.

This was my reply to my local blue badge team:

“Dear Karen

I cried when I received your email this morning. It was just the final straw for me, today. I’ve lived with painful, exhausting, chronic ill health for 26 years now. I live on my own, with hardly any care – the government cuts have seen to that, plus I live in the countryside and it’s almost impossible to get help even if you pay for it yourself privately. I’m currently without a cleaner, because she quit for a full time job and my house is filthy. I’m sleeping in a dirty bed.

Despite my own issues, I’m the main carer for my 80 year old parents. My Mum is wheelchair dependent with advanced heart and lung disease. I got up at 4am Friday morning to drive in the dark, fog and ice to take my Dad for a hip replacement operation – I felt so ill on the drive I had to pull over to vomit.  I’ve had to wait in line for 40 minutes this morning to speak to his GP because he’s having complications and am now going to have to drive 14 miles to pick up a prescription for him, even though I don’t have the energy to get dressed yet.

Yesterday, I took my little rescue dog to the vets for an amputation of his toe. I’ve been awake half the night because he was in pain and couldn’t sleep. I’m so exhausted I can’t think straight.

I know it’s not your fault that the rules state you need a current award letter from this year. But, seriously, I have an indefinite award – that should be good enough. I’ve now had to spend 45 minutes trying to find this year’s pathetic inflation increase which was in a pile of paperwork 2 foot high in the corner of my lounge as I’ve not had the strength, or time, this year to file anything. Then I’ve had to scan every single page as it states on your website, even though this has meant 5 trips to the printer at the other end of the house to turn the pages over – another absolutely unnecessary chore when the information you need is on the first page.

You may like to bring my gripes to the attention of your boss at the next meeting you both attend. Blue badges are there to help very ill and disabled people, whose lives are hard enough without making them harder than they need to be.

Best wishes
p.s. no need for a reply, it’s not like anything you could say would make today better for me unless you’re offering to come and hoover or wash my bed sheets


Welfare Benefit Shame

People living outside the UK think that we Brits have a “free” health, care and welfare system.  It is not true.  We don’t pay at the point of contact, but every working person has money stopped out of their wages by the Government each month in the form of taxes and insurance to pay for our services – the more money you earn the more you pay but even those on minimum wage contribute.  Not only that, but the person who employs you contributes too – so the Government gets the money twice.

Our state pension, and welfare benefits for people who are ill, disabled or unemployed, are paid for through National Insurance contributions.  It’s a complex system, but most people on lower incomes pay 12% of their earnings while people on higher incomes pay 14% (we are taxed separately on top of that, between 20%-40%, so we effectively pay between 32% and 54% of our wages each and every month to the Government).  In addition, our employer pays 13.8% for each employee (and is also taxed separately on top of that!).   We pay into this Government insurance policy our entire working lives in order to receive a measly pension when we retire at the age of 67 and so that we qualify for welfare benefits should we be made redundant or become too ill to work.  However, the Government makes it nigh on impossible to claim welfare benefits.  They take our money, then when we qualify to draw on our insurance through illness or redundancy they refuse to give it back to us.  If this happened with a private firm we could sue them for breach of contract and we’d win, but because it’s the Government they are beyond the law – it makes me furious.

The reason the Government says it makes claiming welfare benefits so difficult is to discourage cheats, ie those claiming who aren’t genuinely ill or unemployed, however the Government’s own statistics show that only 0.7% of welfare spending accounts for fraud.  What they’re really doing with our money is spending it on less important stuff, like £50million to rennovate the Oprah House or billions on a new railway that no-one wants – we’d prefer they improved the one we already have.

You have to know your way around the system in order to get anything, which is fine is you have access to the internet and are intelligent enough to work out how the system works, but not everyone is that lucky.

Both my parents are nearly 80 and now disabled through severe illness.  They need help with all aspects of daily living, however our care system in the UK only offers help with meals, bathing and dressing – nothing else.  They will cook you a meal but won’t shop for the ingredients.  They will help you bathe but then dress you in dirty clothes because they don’t help with laundry.  They won’t change or make your bed.  They won’t clean your home.  They won’t help confused people do paperwork or take medication.  They won’t take you to hospital appointments.  They won’t help when things go wrong in your home.  The Government expects vulnerable, elderly, sometimes confused older people to employ someone to do all this stuff for them – quite how they’re supposed to cope with an employee’s tax and national insurance contributions, and manage when that person is ill or on holiday I’m not sure.  There are Home Care agencies who will do all the paperwork and provide staff for you, but they charge an arm and a leg for the care you receive so you can then afford less care than you actually need.

In order to help with the cost of employing help, disabled elderly people are entitled to a welfare benefit called Attendance Allowance.  Most elderly people don’t know about Attendance Allowance – it’s not like the Government advertises the fact that it’s available.  I only know about it because I’ve been ill for decades and the issue of welfare benefits comes up constantly on forums.  My Dad is now so disabled he can’t dress himself and can barely walk to the loo and back, so at Christmas I downloaded the 46 page AA form off the Government’s website and filled it in for him.  I knew what I was doing because I’d applied for my Mum 7 years ago when she became very unwell with chronic heart and lung disease.  I’m pleased to say that my Dad passed the test and is now able to receive AA.

My parents give me £30 a week out of their allowance.  I live 14 miles away from them and it helps pay for my petrol as I’m constantly tooing and frooing to their house, not to mention all the 60 mile round trips to the local hospital and the 180 mile round trips to the specialist hospital which costs me a small fortune.  It also helps for all the little, and not so little, things I buy for them and all the stuff I print off for them as these days everything from their Electric Bill to their TV licence is done online and they don’t have a computer.  My Dad barely drives now and the benefit helps pay for taxis to get them around town (there is no bus service near where they live).  They employ a cleaner and it pays her wages.  They can’t get out to shop, so I order stuff online for them and it helps to pay masses of delivery charges.  It paid for my Mum’s wheelchair and helped towards the cost of their stairlift.  By necessity they eat a lot of ready meals, which are much more expensive than buying fresh ingredients and cooking yourself.   And the 1001 other things you don’t realize that disabled people need simply in order to function.

If they didn’t have me, though, neither of them would have even known the benefit existed let alone had the mental capacity to apply for it and successfully fill out the very long and complex form.  Despite all their dealings with Occupational Therapists, Physios, our GP and Consultants not one of them has ever mentioned AA to my parents or told them how to apply.

The Ken Loach film ‘I, Daniel Blake’ was shown over the New Year on TV and if you haven’t watched it I urge you to do so, whether you live in the UK or not.  It follows the story of a man who worked for 30 years as a joiner, then had a heart attack and was unable to work.  He was turned down for sickness benefits and ended up destitute.  After months and months he was eventually granted an appeal, backed up by his heart Consultant and GP who both agreed he was too unwell to work but without spoiling the film for anyone who hasn’t seen it, it does not have a  Disney happy ending.  I was so angry after I watched the film I was beside myself.  I live in the 5th richest country in the world and more than half a million people used food banks in 2017 because they were so poor either they, or their children, were starving.  Starving because the Government won’t pay us back our own money when we need it.  And we are all allowing this to happen.  It’s my fault, and it’s your fault.  Why are we not protesting in the streets in our millions?  Where the fuck is our Opposition Leader, Jeremey-useless-Corbin?  Where are all our MP’s, regardless of party?!  I’m so ashamed of my country.

“The true measure of any society can be found in how it treats its most vulnerable members”. Mahatma Gandhi

The Living Wage

I wrote a letter to my local newspaper this week which I thought I’d share with you.  Ordinarily I’d say that writing to your local paper is a total waste of your precious energy because in the scheme of things it’s going to achieve precisely zero.  However, my local MP is incredibly influential and I know he reads our local paper every week.  He is Rory Stewart, former tutor to Prince’s William & Harry, former Deputy Governor in Iraq, Harvard professor  and currently Minister for the Environment, Food & Rural Affairs.  He is an incredibly intelligent man and is touted as being a candidate for future Prime Minister – I might even quite admire him if he weren’t a Tory and hadn’t recently voted in favour of reducing sickness benefits by £30 a week.  So I make it one of my life’s missions to educate him on disability issues through my local rag in the hopes that if he ever does become Prime Minister he might at least be informed on a subject he clearly knows nothing about.  Here’s the letter:

“On the 1st April the living wage was introduced. According to the Dictionary, a living wage is “a wage which is high enough to maintain a normal standard of living”. On a 5 day 40 hour week this is now classed as approximately £15,000 per year.   Unless you’re sick or disabled when the Government expects you to live on either £3,640 or £5,450 per year which is the current rate for Employment & Support Allowance. Obviously mortgages, electricity and a loaf of bread must cost a sick person less than everyone else. Why else would the government think that ill people can survive on less than a third of the national living wage?

This Government has done a wonderful job of brainwashing the populace into believing that all sick and disabled people are faking benefit scroungers, despite the fact that less than 1% of all disability claims are fraudulent. Developing Multiple Sclerosis in your twenties, being paralysed after a car crash in your thirties, having a stroke in your forties or developing Parkinson’s disease in your fifties are not lifestyle choices. No amount of “help and encouragement” from the government is going to grow back the brain cells of someone with early onset Alzheimer’s and make them capable of work. That is why we have a welfare state.

Welfare benefits are not hand outs. Most people who unfortunately have to claim sickness benefits used to work. They paid a National Insurance stamp. Note the word insurance. If we paid into a private insurance scheme for 35 years then when we claimed were told the rules had changed and the policy wouldn’t pay out we could take our case to the Financial Ombudsman and we’d win. Not so with our National Insurance. The Government can arbitrarily change the rules on what constitutes illness or disability and so stop paying benefits to millions of people who are apparently miraculously healed overnight.

The Government claims they do give welfare benefits to those “most in need” but in reality sick and disabled people are penalized for their circumstances, like their illness is somehow their fault. The top rate ESA of £104 a week barely pays most people’s grocery bill.

So, now the Government have made it almost impossible to actually claim sickness or disability benefits and are targeting funds to those “most in need” when are we going to see those “most in need” treated with some semblance of humanity and benefits raised so that they can actually survive, let alone live like everyone else?”

Weekly roundup

This week has been exhausting and physically demanding.  I told my parents that they had better speak up about any jobs which needed doing because after this week nothing is getting done for a very long time.  I need to rest up before my surgery, not arrive there shattered and ill, then of course I’m facing a long recovery period when I’ll be able to do very little.  So they gave me a list as long as your arm and I’ve been there every single day this week getting it all done.

I contacted Social Services to ask for some home care while I recover.  They only provide help with bathing and meals, the cost of which is partly borne by you and part by them.  They’ll wash you, but put you back in dirty clothes and a dirty bed because they don’t do laundry.  And they’ll cook for you, but not provide you with any food.  It’s fucking insane.  Private care companies provide all the other care tasks and charge you £16.50 an hour for the priviledge – where I’m supposed to get that money from I don’t know.

Which brings me on to the financial assessment for Social Services funded care.  They want to know every penny you receive in income………..but aren’t really that bothered about your outgoings.  There are no questions on how much your food bill is, or the fact you need to own a car as there is zero public transport.  Eating and getting to the bank to actually draw out money are obviously unimportant considerations.  There are loads of questions about rent and hardly questions about having to pay a mortage (don’t get me started on that……you can claim housing benefit if you live in a rented house, but nothing if you have a mortgage.  Yes, once you’ve spent 40 years paying off your morgage you may have capital in your house – which you can’t access unless you sell and buy somewhere smaller, which in my case would be a tent, or when you’re dead).  The whole thing is a farce.

Speaking of farces, the UK is implementing a ‘living wage’ in April.  This will guarantee workers £7.20 per hour which, over a 40 hour week, equates to £15,000 ($21,500) a year.  This is the very minimum the government thinks you need to survive on.  However, if you are sick and unable to work you receive Employment and Support Allowance of £108 per week, which equates to approx £5,500 ($8,000) per year – £10,000 ($14,500) less than a ‘living wage’.  As far as I’m aware, a loaf of bread costs a sick person just the same as it costs a healthy person, yet we’re expected to survive on a third of the money a healthy person needs for a basic standard of living.  The reason ESA is so low is to “incentivise” ill people back into work – it can’t pay to be “on the sick”.   I’m not quite sure what job someone in their fifties with early onset Alzheimers, or someone with advanced Multiple Sclerosis, is supposed to do?  Professional street begger perhaps?

I had my Orthotics appointment this week to have my custom-made insoles fitted – it’s only taken 6 months.  I have to wear them in gradually and I think it will take a long time to get used to them, despite the fact they’re as soft and cushioned as they could make them.

In the UK, in addition to ESA which we get when we’re sick we can also claim disability money called PIP.  This is supposed to help with transport, care in the home and aids and adaptations although it’s such a small amount (£250 or $360 per month) that most people use it to pay for cleaners, shoppers and other really useful help.  The Government, in their infinite wisdom, are currently trying to decide if PIP should be scrapped because any aids, adaptations and care we need is already provided by the state.  Are they fucking kidding me?  As you can see above, barely any home care is provided by the state.  Wheelchairs are provided, but not mobility scooters – I can’t self-propel a wheelchair so need an electric scooter to get around, not withstanding the fact I live in a village with no pavements.  I am allowed 1 pair of orthotic insoles per year, despite the fact I need at least 3 pairs for my wellies, boots and slippers.  My wrist braces wear out after about 6 months, but again I’m only allowed 1 pair per year from the state – so I buy the rest I need on Amazon.  And so on, ad nauseum. The whole thing would be laughable if it weren’t so frightening.

I really do think that my Government wants all sick, disabled and old people to just hurry up and die because we cost the “hardworking taxpayer” far too much money.  The fact that we all used to be “hardworking taxpayers” before we got sick (I was working 3 jobs) and have paid National Insurance contributions towards the cost of our care is apparently irrelevant.

Who cares?

Living alone, you have to do everything yourself.  And I mean everything.  From making a cup of tea to mending a broken boiler, from shopping to decorating, from fixing flat tyres to putting the bins out…….it’s down to you.

I’m often asked why I don’t have help in the home and this is the answer: I can’t afford it.

In the UK, if you are unable to work due to illness you are entitled to claim welfare benefits provided you have paid enough National Insurance stamp (or tax to you and me) when you were working.


Our sickness benefit is called Employment & Support Allowance and for a single person amounts to £106 ($161) per week.  Considering my grocery bill at Tesco is £60 ($91) per week and my gas/electric bill takes up £30 ($45) a week, it doesn’t go far.  It doesn’t cover mortgage, insurances, clothing, telephone, TV licence, water rates…………nor bugger all else.  It’s basically a token sum which no human being could possibly live off.

It’s also increasing difficult to get.  Despite being ill since 1994 and having strong medical support from both my GP and consultants, my last application was turned down and I was told I was “capable of some work”.  It took an 8 month fight, including the support of my local MP, to get the decision overturned.


If you are also disabled by your illness, you can claim a further benefit called a Personal Independence Payment.  This comes in 2 parts: a mobility component to pay for help with getting around and a care component to pay for help in the home.

Mobility component:

For me the mobility component comes to £220 ($334) per month which sounds like a lot, but I need an automatic car which on average costs over £12,000 ($19,500) to buy.  I don’t have any savings, so I either need to use the Motability Scheme or have a car loan (which in monetary values equates to the same thing).  A five year £12,000 loan has monthly repayments of £237 ($360), so goodbye mobility component of my benefit with nothing left over to insure or maintain my car, or put the £80 ($121) of petrol in a month which I need just to drive to town and back to see my parents, let alone go further afield eg. to the hospital for my physio.

The mobility component of PIP is also supposed to be used to buy mobility vehicles.  If you need a wheelchair these are provided free by the State.  If, however, like me you need an electric mobility scooter you have to buy your own, which costs anything from £500 for a small scooter to tootle round the shops with, to £5000 for a road worthy vehicle (which I need, as there are no pavements where I live so I have to have a Class 3 road vehicle just to ride up my village).  As you know, my parents had to buy my recent 3rd hand road scooter as I simply didn’t have the cash.

Care component:

The care allowance is £54 ($82) a week, which you are supposed to use to pay for care in the home.

Social Services offer home care services, but ONLY for meal preparation and bathing.  They will not get your shopping, clean your home, do your laundry, change your bedsheets or anything else.  It’s almost impossible to qualify for Social Services home care unless you are a bedridden cabbage, and even when I was a bedridden cabbage my care was a mere 30 minutes a day.  WTF are you supposed to do with that?!

So you end up employing a private care agency to get the care you actually need.  They charge £16.50 an hour, so out of £54 you can only afford 3 hours care per week.  That’s not even half an hour a day, and many of my main meals take an hour to prepare and cook.

Disability benefits are also increasingly hard to come by.  My first application, despite being in hospital for respite care at the time as I was too ill to continue living alone, was turned down.  It took 14 months, and having to employ a welfare rights solicitor, to get the decision overturned (and the solicitor took all the back-pay in fees).  Over the next 8 years every single renewal application (which happened every 2 years) was also turned down and had to go to Tribunal before the decision was overturned.

Claiming benefits is not for the faint of heart and affording care in the home is, for many, a longed-for but distant dream.  My health suffers immeasurably due to the fact that I have to push myself to do physical tasks I know I’m not really capable of, but I simply can’t sleep in a dirty bed and like everyone else I have to eat.  If I can’t afford to employ help it’s down to me, sick or not, in pain or not, exhausted or not………… there is no other option but to crack on and care for myself.