Fifteen years after
my initial diagnosis, I am still reasonably healthy. I have managed my HIV with
determination and a holistic approach to life, healthy diet and regular exercise,
and I’m lucky to live in a healthy rural environment.
My meagre finances
consisted of two very small pensions, and the state benefits of Disability
Living Allowance (DLA) and Income Support (IS) which had been set up by social services
a few months after I was advised to give up work in 1995.
aftermath of the diagnosis is a period of which I have little recall. I was in
shock. However I was assured I would be secure for life, and the added stress
of worrying about money was removed. I’d had no cause to think about it since.
I first heard about
the intended review of DLA in the March edition of HIV Treatment Update
and read about it with interest but no great concern. By then I had already
filled out a form from the Department of Work and Pensions (DWP), assuming it
was their annual records update.
But as the HTU piece advised, I did contact THT
[the Terrence Higgins Trust], and was reassured from the article and THT that
at 59, I would be a long way down the review priority list.
The prospect of being
financially ‘trimmed’ didn’t daunt me much, as I felt I was moderately healthy
(and didn’t understand the implications), but within five days of completing a
second form on 27th May I was shocked to receive a letter saying I
was no longer eligible for ANY DLA. In consequence I would lose not only my
Motability car but my Income Support too. The only surviving benefit would be
£62.45 a week Severe Disability Allowance (SDA).
In panic, I did some
sums and found that after mortgage repayments, Council Tax and prescription
charges I would be left with £38 a week to live on.
My new financial
plight and some health issues that arose at that time made June 2008 a time as
frightening as the period in 1995 when I was diagnosed. However I knew I had to
deal with it, so I set about it getting myself informed.
I telephoned THT, the
offices, the Benefit agencies, my HIV Consultant and my GP. I logged onto hivbenefits.co.uk
to see what had happened to other people who had been reviewed. I visited my MP
and saw a volunteer from the Citizens Advice Bureau (CAB) at my local surgery
and I got in contact with the Disability Employment Agency (DEA) as I assumed
the only solution was to somehow get a job.
communicated with was appalled at what had happened, especially as the DEA had
told me I was unemployable and they would not be able to help me. What rational
employer would give a job to a man approaching sixty, who had not worked for 15
years, had numerous health issues leading to unpredictable working hours and
was HIV-positive (that’s if I disclosed this last bit)? Added to that, I
learned that if I did get a job and it exceeded £88.50 a week, I’d lose the
All the above
professionals said, ‘You HAVE to appeal’, but first to ask the DWP to
reconsider their decision, and then to request an independent tribunal to state
my case orally. The thought of this terrified me.
So I wrote a lot of
letters, the first requesting the ‘revision’, and a ‘Statement of Reasons’. I
accompanied this with supporting letters from my consultant, GP, and someone
who had seen my health decline over the years.
As my income was now
£5000 below the figure the government had recently stated was an acceptable
level to live on, I applied for help with housing costs, and with prescriptions
through the NHS low-income scheme. Then I had to just sit back and wait, until
the slow wheels started moving, whilst ensuring my weekly shopping bill did not
exceed £20. Meanwhile the District Council sent a bill for £700 as Income
Support was no longer paying Council Tax, even though they had agreed I was
entitled to benefit.
All this happened
within a month of losing my DLA entitlement. The only thing that kept me sane
as I ploughed through red tape and bureaucracy was the confidence I was a
mentally strong person with sufficient skills to articulate and survive. I
became driven by what had to be done, and it told on my health – I lost 10kg
that I could ill do without.
Then soon afterwards
I received another letter saying an acknowledged Income Support overpayment
which already was being reclaimed drip by drip would now have to be settled in
full - to the tune of more than £20,000.
The turning point was
my meeting with a legal adviser from the CAB. She reassured me I could win back
what she felt should never have been removed, and that they would support me
every step of the way. They have been brilliant!
When I received a
letter from DWP saying my DLA mobility component was restored because of my
revision request, CAB encouraged me to continue to fight for the reinstatement
of the entire package. After CAB wrote a letter listing 20 health issues which
I had learned to live with and accept, like daily diarrhoea and changing
bedding, or asking someone to carry my vacuum cleaner upstairs, etc, the entire
package was restored.
However, six weeks
later I was still waiting for written confirmation that all of it had been
reinstated, and once again CAB got involved. Within a couple of days I got a
phone call telling me I was back on Income Support.
I have survived, but
a few things have made me very angry. The first is the way weak minority groups
are being targeted to bring down the numbers on benefits – on my journey I came
across instances of people on dialysis and with congenital lung disease being
similarly affected. None of us should have to endure this traumatic experience.
I’m also shocked by
the speed at which money is removed, and how slowly it is reinstated.
But thank goodness
for the Citizens Advice Bureau. Already I’ve been able to help another ‘victim’
by putting them in touch with CAB right at the beginning.