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I was born with spina bifida, and things have got
progressively worse over the past seven or eight years. I used to use a stick
but now I use a walker; it’s much safer.
I applied for an electric wheelchair recently. I
can get to work, but I can’t get to my local shops because there’s nowhere to
park and I can only walk a very short distance. I’ve got a manual wheelchair
and my husband pushes me [but it isn’t ideal]. My GP was all in favour, but
because I can walk a very short distance I was told I didn’t need an electric
wheelchair. I’d love to be able to go to the shops on my own.
Now [I’m on] dialysis, it has become a bit of a
factor – my husband can’t come with me every time, it’s three times a week
and he has his own life, and he’d have four hours of twiddling his thumbs if
he goes with me. So I have to go straight from work, and I have to walk from
the car park to the second floor. When I get there I’m absolutely knackered.
I’ve got a vein in my arm where they put the dialysis in, and when you put
your hands on your trolley to steady yourself soon afterwards, it starts
bleeding again, and then I have to get myself to the car. It sounds bizarre,
but it is a real problem. I get to the car and have to change the dressings,
and it’s a hassle. I could really do with a little electric wheelchair, just
so I can get to dialysis on my own and not worry about my arm bleeding.
You seem to have to be on your knees before [the
state] will help, which doesn’t promote independence. If they did have that
assistance, people could be out and about, doing their own thing, and they’d
be much fitter and more mentally stimulated. I think if there was more
support, they’d be able to get far more people back to work than the way
they’re doing it now – and probably save money in the long run.
Departments don’t work together. The best person I
see is my GP, because she sees me regularly, but the people making the
decision on the wheelchair have never met me. They can’t see how difficult it
is for me to walk.
Having my ESA cut
The 2010 [government] budget was absolutely awful.
That was when they changed the goalposts so I couldn’t claim [ESA]. I had
been claiming for a couple of years before that, after giving up work in
2009. I was put in the work-related activity group, which at that time wasn’t
time-limited – it was reassessed every two or three years. I went through the
ATOS assessment. I don’t have any problem with ATOS. I had a fine experience,
apart from the fact that it’s not a doctor who looks at you; I don’t like
telling a business person about my medical conditions.
I came out of my ATOS assessment with 15 points,
and I was fine [to claim ESA]. I was hoping to get back to work, but then
things [my health] got a lot worse. I asked to go into the support group, but
they said no. Then [in 2010] they changed the rules so you could only be on
it 365 days, and that was it. I stopped getting the benefit straight away on
30 April.
Losing my appeal
I rang them [the Department of Work and Pensions] and
asked what I was to do about it, and they said you can appeal. We had to go
through the whole rigmarole of Citizens’ Advice and giving more people
information, and we went through a tribunal.
I argued on three points of the criteria. One of
them was a continence issue, because I have a urostomy [a surgical procedure where urine passes through a specially made
opening and into a bag, bypassing the bladder]. The reason I gave up work
was that I started to have problems with my bowels as well. It can happen for
a number of reasons, and if it happens your clothes are spoilt. You can’t sit
in an office smelling of wee. But they said: ‘That’s up to you to sort out’.
At one point, they asked me to prove that I had incontinence problems with my
bowels. I was like, ‘What sort of proof do you need?’ We weren’t allowed to
submit diary entries, or anything like that, and the doctor didn’t send my
medical notes.
[The second point was about how far I could walk.]
When I went to court, I’d dislocated my leg after a series of bad falls, so I
was in a wheelchair and had a cricket splint on. But because I was in a
wheelchair, they said I could mobilise 50 metres. The third thing was that I
could move from a seated position without any help. I can’t do it without
either my stick or somebody’s help, but they wouldn’t have that either. They
disagreed with all my reasons, and when I said I was prepared to show them,
they said it wasn’t necessary.
The decision was I could stay on ESA, but not the
benefit section. They accepted that my health problems were enough to keep me
off work, but they weren’t going to give me any benefit for it because I
wasn’t entitled to it. So I was allowed to stay off work – I didn’t have to
go to any more Work Capability Assessments or anything like that – but I
wasn’t allowed to go into the support group and they wouldn’t pay me any
benefits. It’s a very strange thing; I’ve never heard of it before.
They made me feel so bad about myself in that
tribunal I came out in tears. They basically told me I was a liar. Benefit
scrounger – that’s what I felt like when I came out. We spoke to a solicitor
through Citizens’ Advice, but he didn’t come into court with us on the day,
which I could have done with because they kept talking over me and confusing
me. They were bullies, really.
It was a horrible experience. I’d never do it
again. I’d rather be skint. I was constantly made to feel like they thought I
was lying, that there was something I wasn’t telling them. They made me feel
so small. I’ve never really felt disabled, I don’t do pity and all that
stuff, but I really did feel disabled that day. I felt like I should just go
home and kill myself basically, and not be a scourge on society.
Managing without ESA
It had taken two or three years to go through all
that, so I didn’t appeal again. I should have done, but I didn’t because I
was just tired of it all. It gets you down; it really gets you down. I was
starting to get quite depressed. I’m quite a cheerful person, but I found I
was concentrating far too much on the bad things in life. That’s what it
makes you do. So I didn’t appeal, and we just struggled to manage – borrowing
money and things like that. The hospital now think I need to have an ileostomy,
but now I’ve dropped out of the system.
I’m in a position where I can go back to work now,
but I couldn’t a couple of years ago when I was going through all the
wrangling and court. My health has improved in the past year, apart from the
dialysis, but [if it hadn’t, I still would have had no support].
Financial difficulty
It made everything much more difficult
financially. We were down to just my husband’s wage. We had no new clothes
for three years. I’m not a big fan of shopping, but we had nothing new for
three years. We didn’t go out for any meals, didn’t have any takeaways,
didn’t have any wine – none of that. I didn’t buy any birthday presents for
three years, because I just couldn’t afford it. We had to cut out all that
sort of stuff, and just exist. It’s joyless. I know you’re not allowed them
as a benefit scrounger! But they do make you smile. We had to do things like
turn the heating off because the bills were too nigh; not have the fire on,
just putting more jumpers on. When you’re pre-dialysis one of the things you
suffer from is being cold, so I was extra cold. It wasn’t a nice time. We
suffered very much financially.
Hari kept working, but he had to look after me as
well, and get me to my hospital appointments, and we don’t qualify for
Carers’ Allowance. Hari has been very tired the past few years. If I had an
electric wheelchair, he would have more time, and he’d be able to get a
job with more hours, which would be a good thing. But because he has to spend
so much time looking after me, he can’t do that.
The Jobcentre
I did go and see the disablement officer at the
Jobcentre, but she was as much use as a chocolate teapot. When I walked in
she asked me, ‘What exactly is it that you think I can do?’ I said, ‘Well,
I’m hoping as a disabled person you can help me find a job.’ She said, ‘Well,
we don’t really do that. We help
people with learning difficulties sort their CVs out and write letters, but
that’s about it.’ I went to three meetings with her, but it was just a waste
of time. I’ve never set foot in the Jobcentre since.
Further health problems
I’ve always had problems with my kidneys because
of my spina bifida, and I’ve always known that I would have to go on dialysis
one day. At the end of last year, I was told I needed to go to the
pre-dialysis clinic, because my kidney function was down to 11%. I wrote to [the
DWP] again at that point, writing to let them know that my circumstances had
changed – when I first started last September, I was quite poorly. I wrote to
them in October [2014], didn’t hear anything till new year’s eve, when
someone rang me and said, ‘I’m very confused by this letter – you’re asking
to go in the support group, but you’re already in the support group’. I said
I wasn’t.
She said she’d get someone else to ring me in a
couple of weeks. Nobody rang for a couple of months, so I rang them. They
said, ‘Yes, you are in the support group.’ I asked for a letter to prove that
I am, and I never received that. About March my husband changed his job, so I
rang to let them know that, and they said, ‘You may be entitled to benefits,
so we’ll send you out the form again.’ That form came, we filled it all in,
sent all the supporting information in, and I’ve heard nothing. That was
March. I haven’t rung them. I just can’t bear it. I hate ringing them – they
have Vivaldi’s Four Seasons on when they put you on hold, and that tune now
makes me feel physically sick.
Trying to find a job
I decided – oddly enough, just before I was told
I’d have to start dialysis – that I’d had enough, and that I’d see if I could
go back to work. It would be better for my mental health, because sitting at
home is so boring, and I like working, I like being around people.
But it’s very difficult finding a job when you’ve
got a disability. If you get two people come to an interview with the same
skills, and one is disabled and the other isn’t, [an employer is] going to
pick the able-bodied one – they’ll think they have to make a lot of
adaptations for a disabled person. People aren’t allowed to ask you in
interviews about it, which I think is wrong – how can they know what you need
unless they ask you? I don’t need any adaptations, I just need to be able to
get to my desk and not have a lot of clutter on the floor, because I have a
walker for moving about.
I started applying for jobs last year, and I
applied for over 80 admin jobs. I got interviews for most of them, so I had
the skills, but I didn’t get any of them. I had over 50 interviews, and went
to them all, but I never got a job. They all said to me, ‘You interview
really well…’ but I’d never get the job. I think the disability put them off.
This was all admin jobs in the NHS.
I actually wanted people to ask me [about my
impairment] at interviews. I started telling them in the end – I’d say, ‘Just
in case you’re wondering, I don’t need any adaptations if I come to work for,
I just need to be able to get to my work station. They’ll say things like,
‘You’ll need to carry a lot of files, do you think you’ll be able to manage?’
And I’ll say, ‘I know for a fact you have trollies – that would be perfect
for me.’ But they scribble something down, and you think ‘hmm…’
I went to do a medical admin course a couple of
years ago. I took three exams, passed them all,
and loved it. I was the only disabled person on my course; I was probably one
of the oldest, and all the rest of them were gorgeous girlies, you know.
Somebody said to me ‘It’s how you look in admin – it’s good if you can type
fast and all the rest of it, but if you look the part…’ And they all got jobs
instantly after that course, because they all look right. I’m a brilliant
admin, I’d be an asset anywhere, but I don’t look the part.
Going back to work
At the beginning of June this year, I was looking
for jobs on Linkedin and found a job for a company called OpCare, and I applied.
It was a full time job, but I didn’t realise when I applied. When she rang to
offer me an interview, I said, ‘I’ve just realised it’s a full time job; I
can’t do a full time job I’m afraid’. She said, ‘Come in anyway and have a
chat, because I like your CV.’ I went in and she offered me the job as
part-time admin. She just liked my attitude.
It’s a brilliant company. They make artificial
limbs for the NHS, so their building is perfect; it’s ramped and has lifts
and big wide corridors. I had a review before I started of moving round the
office to see if everything was okay and all that. I was thinking about it
today, though – I can only work there because it’s such a good building, and because
their attitude is good. Because they deal with [disabled] people they have
that mental attitude as a company, and the boss is very understanding of all
my health problems and disabilities.
A month after I started, I was told I would have
to go on dialysis, and I thought, ‘Oh for god’s sake, it’s all going to go wrong
again now. I’m going to have to stop working.’ I told my boss, and she was
absolutely fine with it. She said, ‘If you can do afternoon dialysis and come
to work in the morning, that’s fine’, and she let me have all the time off I
needed. Now not every company would let me do that. I could have been working
somewhere where they wouldn’t understand, and I was still in a probationary
period so they could have just fired me. I’m quite lucky that a company has employed
me, really.
In order to know I can get to work in the morning,
I have to be up three hours before. I start work at 9.00, so I have to get up
at 6.00 to check my body is in good working order that day and I can get out
of the door. Some days it doesn’t, and I have to ring in sick – I really hate
doing that. Again, I’m really lucky with the company.
Stress of dealing with the system
I’m managing both dialysis and work and it’s very
tiring. But not to have to deal with the Department of Work and Pensions, and
not having that stress, is much better for my health. It’s a stress that
disabled people could really do without, especially if they’re too ill to
work. And it delays people’s ability to go back to work. Not being able to
sleep at night – having those money worries, and knowing you’ve got to go to
a tribunal and that they’re going to pick holes in everything – you lie in
bed with it churning in your head, and then you get up the next day and
you’re tired before you even start.
And it annoys me that it’s such a waste of money.
The award I had for DLA, in 2005 or 2006, was an award for life. My
disability is not going to get any better – I’m a lot worse now than I was
when I was awarded it. It infuriates me the amount of money they’re wasting
on assessing people who were given life awards. Although I’ve always been
disabled, I never claimed anything until then, because until then I was a lot
fitter and my health has really deteriorated. I used to be a publican; I used
to work all the hours God sent behind the bar, cleaning cooking. I was earning
a good amount of money then, so I never claimed, because I thought it was
unfair of me to claim because I didn’t need it. I wish I had now! I’ve always
worked, from the age of 15, but that isn’t taken into account anywhere down the line.
Disability Living Allowance (DLA)
I’m still on DLA. That pays for my car; that’s my
independence – and I’m terrified [about the change to PIP]. I haven’t been
reassessed yet, and because I lost my ESA claim I’m just assuming that
they’re going to look at PIP and say I’m lying, and then take it away from
me. Then I wouldn’t be able to work, I wouldn’t be able to drive, I wouldn’t
be able to go anywhere. It’s another worry, but I’m trying not to think about
it too much.
It’s [the car] everything. Absolutely everything.
I can’t get anywhere on foot; I just can’t. I have to drive everywhere. And I
have so many hospital appointments – as well as the dialysis and kidney
problems I have a heart problem, I have orthotic appointments for shoes,
there’s tests at the transplant clinic. You’ve got to get to all these
appointments. And I wouldn’t be able to get to work without a car – I
can't even walk to the end of the path outside. So my car is my life, really. I’d
be completely housebound without it unless Harry took me everywhere, and then
he’d have to give up work.
I love the independence driving gives me. I like
being able to get to work in the morning and home again. I can get to
dialysis on my own – it’s a struggle getting back, but it’s got to be done. I
want to train to do dialysis at home, so I can fit it in with my life rather
than going to hospital, but that’s a way off yet.
The Work Capability Assessment
The Work Capability Assessment needs to be
reformed completely. The questions bear no relation to your specific
disability. They asked me how high I can lift my arms when there’s nothing
wrong with my arms, and asking me to add up two and two. ‘Can you reach out
and lift that cup?’ Nothing that was relevant to my disability – no mention
of continence, or walking long distances, or whether I could get up if I
fell. I didn’t feel they asked me the sort of questions that reflected the
problems I was having. I was asked nothing about incontinence, and that was
the main reason I had to give up work.
[The assessor had] never heard of spina bifida;
she didn’t know how to spell it. The man who assessed me for my DLA was an
actual doctor, who knew about spina bifida, and came to my home [unlike in
the current system]. You can’t take a blanket view of disability; you have to
look at each case individually. I like to talk about my good days rather than
my bad days, but I was told absolutely not to do that. [I was later told] I
should have kept a diary, and that can have a higher success rate – but most
people unfortunately are just honest, and that gets you nowhere.
Benefits of employing disabled people
I think a lot of people who don’t have any
experience of disability would maybe not knowingly discriminate against a
disabled person, but would probably pick and able-bodied person over a
disabled person. Unless they’ve got experience of disability, I maintain that
most employers will pick an able-bodied person. If you don’t have to deal
with disability, you’re probably not going to.
It’s a good thing to have a disabled employee, I
think, because you get to see things from a different perspective – and
everyone needs to see things from a different perspective now and again.
Extra costs
The continence thing – pads and what have you.
I’ve only recently gone to the local clinic about that, but the stuff they
provide is just so awful – it’s like something you’d have got in the 60s – so
I buy my own at the moment. I have an awful lot of prescriptions, but I get
free prescriptions. My wheelchair is provided, but they still refuse to
provide me with an electric wheelchair. I might have to buy one, because I
could do with one. I’m not lying! I’m going to keep applying and see what
they say.
I have trouble with shoes; I can never get shoes
to fit my feet. I have no feeling in my feet, so I like canvas pumps – if I
wear proper shoes they rub, and I don’t know they they’ve rubbed, and I get
infections. I had endocarditis a few years ago, which is a disease of the
lining of the heart, and that was because of a blister on my heel that I
didn’t know about. I was in hospital for a month. And I buy a lot of shoes,
because I don’t walk on the sole, I walk on the side, so it wears them out.
But my lovely company that I work for has an orthotics department, and they
are going to have a pair of shoes made for me. They don’t like pumps at work!
What I needed
It’s dead simple – they should not have changed
the ESA [work-related activity group] to 365 days, when they used to reassess
people every two years. I’d just been reassessed when the rules were changed,
and I was taken off it. If I’d been able to stay on it a bit longer, I would
have been well enough to have come off it.
Whereas instead, everything lingered for an extra
year or so because of the stress of it all. [If that investment in me had
been made], they’d have been better off in the long run. Hassling people
constantly, and forcing them to worry, just makes things worse. I’m a very
positive person – if it can bring me down, it can bring anyone down. People
have killed themselves over this, and I can understand their despair. I feel
physically sick when one of those envelopes drops through the door.
If you look at the government’s figures, mine
would be a success story – I went off ESA, and eventually I got into work.
But they drove me to such depression and despair. I ended up so fearful by
the end of it. I’d much rather be able to focus on my dialysis, but I can’t
survive without working, and I’ve been offered absolutely no help whatsoever.
I know why the government did it – [to stop benefit fraud] – and that’s
fine but they gone about it in a cruel and heartless way. It is now a completely unfair
system.
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