This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
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An HTU reader’s experience of the DLA review, by Michael Ratsey

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.

Glossary

diarrhoea

Abnormal bowel movements, characterised by loose, watery or frequent stools, three or more times a day.

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

The immediate 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 NAM 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.

Everyone I 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 SDA.

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.