Bessie Biela doesn’t go out much, other than to buy food. She has agoraphobia and Asperger’s and the stress of leaving her home is difficult, but there’s now another reason she is stuck within four walls. With cuts to her benefits, she can’t afford to leave. “Even buying food costs money travelling,” she says. “I can't remember the last time I bought an item of clothing even from a charity shop.”

“I’m trying to juggle all the bills. The way they come in and the benefits are paid makes it impossible… Life’s been awful throughout [the last] year. The fear and stress is awful.”

We speak in October 2013, six months after ‘Black April’ brought in an onslaught of social security cuts. Bessie, 48, lives alone and tells me that as the money coming in shrinks, she’s starting to get into debt.

Her heating and other utilities are, for the first time, in six months of arrears. She’s losing over £12 a week since the bedroom tax saw her housing benefit cut for having an extra bedroom and she’s been unable to pay her rent for five weeks.

Bessie Biela: "The fear and stress is awful."

In what emerged as the flagship policy of last April’s cuts, the bedroom tax has seen as many as 660,000 people in social housing lose an average of £728 over the last year. This came at the same time as £500 million cuts to council tax support and devolution to local authorities led to many low earners and people with disabilities having to pay for the first time. (From today – exactly one year on – 670,000 more households face increases in council tax after the government’s “transitional grants” to protect particularly vulnerable people run out and are not renewed.) Black April also saw benefit increases capped at 1% a year rather than being kept in line with inflation as usual; one cut in a pile of cuts that showed how to leave people who were already in poverty with less money than they need to eat, be warm, and pay the rent.

“I’m now at my wits end with bills and arrears,” Bessie tells me. “I’ve thought about selling certain items that I’ve had inherited from my late mother and father because I can't afford the costs of living on benefits. A couple of rings, a gold sovereign and a few things like that…Where would you draw the line, though, with selling? The items will be gone and the money will too as it won't last long and then what will happen? It'll have been such a waste.”

I talk to Bessie again in the New Year, three months after we first spoke. She’s now in over £2,000 debt. Her arrears for the bedroom tax are over six months, along with water and heating arrears still growing.

“I wasn’t in debt until last year,” she says. “Some companies have passed it on to debt recovery and of course, that's adding more charges… I’m making token payments to creditors [but] even this is hard.”

Since being diagnosed with agoraphobia two years ago, Bessie’s been signed off sick from work. She tried voluntary work recently but had to stop due to the stress being out the house caused her. She’s lived off her savings since being unable to have a job but her those have now run out and the bills keep coming in.

Her two-bed flat shows the signs. There is no cooker in the kitchen and Bessie tells me she goes without a freezer and a washing machine now. “I’ve had prepayment meters [put] in and don’t watch television any more", she adds.

Bessie tells me she held off selling any furniture and I ask about her parents' jewellery. "I sold the rings that belonged to my mother just to be able to eat and heat and pay bits off,” she says. “I had no choice.”

Meanwhile, Sarah Regan* scrapes together money wherever she can. Her nine-year-old son, Adam, has autism and she left a well-paid job as a web design manager to be his full-time carer. She tries to do part-time work at home; some freelance writing when she has a few spare hours. However, due to the way benefits are awarded, it’s leaving her £930 worse off a year than if she didn’t work at all.

She tells me she’s “resorted” to a food bank once but tries to piece together meals for her children from what she has.

“The cheapest savoury meal is soya mince, half a teaspoon of Marmite, half an onion, and Smash topping,” she says. “It feeds three to four for under 50p. You can make hard tack, a biscuit-type bread without yeast, with Tesco flour for 74p a kilo and water… I tried growing my own veg but the carrots were only half an inch long, and slugs ate the peas.”

I first speak to Sarah in the spring of 2013 as she learns that the bedroom tax will see the family’s housing benefit cut by 14%. Adam’s disability means he has to sleep in a separate bedroom to his brother, 14 and, like many families affected by the policy, the "spare" room is actually vital. The family was only placed here a few years ago after being homeless and the increase in rent is money Sarah simply doesn’t have.

Sarah looks at the pamphlet she’s been given suggesting the family take in a lodger.

“Do you know any lodgers happy to sleep standing up and interested in paying to share a house with a child liable to have a destructive autistic meltdown at 5am and attack you?” she says. “[Adam] also has some very creative and decorative ideas which he expresses once in every four trips to the toilet. So where's the money going to come from for the bedroom tax, benefit cuts, food cost rises, gas, water, and rent rises?” she asks.

Benefits have been cut at a time when living costs have increased. The maths doesn’t work.

“Rent is going up 5.2%. Water rates up 3.5% . . . My energy bill has gone up too, over £100 this year,” Sarah says. “Last winter was the worst. Feeding the meter £10 a day to keep warm. My boys don't go hungry though. I turn the heating off when they're at school.”

We speak again nine months later. Sarah has applied for a Discretionary Housing Payment (DHP), the fund local authorities can award to those needing help paying the rent, and emails me to tell me how it’s gone. “I suddenly got a letter saying I couldn't have a discretionary housing benefit payment because I didn't have to pay bedroom tax at all because I had a disabled child on the middle rate of DLA,” she writes.

This is a few weeks after Bessie emails to tell me, after having sold her late mothers' jewellery, her application for a DHP has now been successful. She’s been told the award has been backdated to last April and will be renewed annually depending on the funds available. It gives her temporary respite. “I hope by then the bedroom tax will have been abolished,” Bessie writes.

Neither Bessie nor Sarah's experience is unique. Rather, they’re reflective of the wider confusion and error that have plagued the benefits changes over the months since their introduction, be it who is being penalised or who is being helped. Discretionary Housing Payments were held up from the beginning as the solution to the impact the bedroom tax would have on the disabled and long-term sick, but as research by Papworth Trust showed as early as last summer, disabled people are no more likely to be given an emergency housing payment than non-disabled people. This was in addition to a series of unclear and fragmented concessions for some families with disabilities over the course of the last year and the admission that a loophole has seen 400,000 people wrongly charged.

For others, things have continued to worsen. Some 28% of tenants affected have now been pushed into arrears for the first time over the past 12 months, according to research by the BBC released last week - and for some this means the risk of losing their home.

Pamela and Jim Hardy* were given their eviction notice in February. They’re due in court in May but they tell me, with their health the way it is, they aren’t up to going. Pamela has Multiple Sclerosis and is full-time carer to her husband, who has both mental and physical health problems, as well as their nine-year-old daughter, Katie. Things were difficult before the benefit changes but the cut to their housing benefit means they now have over £400 of rent arrears.

They ask me not to print their real names as they tell me they feel “embarrassed” they’ve reached this point.

“When something like the Bedroom Tax comes in, things kind of hit us,” Jim, 42, says. “We’re already dealing with health matters [and then suddenly] we’re debating and trying to get hold of information to find out what’s right and wrong… Life starts to go ahead without you.”

Their housing association put the family in their three-bed house seven years ago as a "medical move". Both Pamela and Jim’s doctors say their individual conditions mean they need to sleep in separate bedrooms but as they’re married, the bedroom tax rules now count Jim’s room as "spare". It measures less than 50 foot square and legal advisers have told them it’s illegal to call it a bedroom.

Medical test units are squashed against the bed and a small cupboard is full of boxes of stored medication and controlled drugs that need to be kept locked away. With Katie in the house, there’s nowhere else to safely store it all.

Jim's room, which is now classified as "spare".

“We [feel] confused and upset and disgusted with the rules,” Pamela, 49, tells me. “[Especially as] we have strong medical support… This home is ideal for us.”

The family received a DHP when they were first penalised for the room but the award was only for two months. It ran out by June and when they applied again, they were refused. “We were told that our income had been calculated using [both of our] Disability Living Allowance and my war disability benefits and this caused our income to be too high,” Jim says.

He tells me that they only buy what they need and have to do this online, with extra expense, as they can’t often get out of the house to go to the shops. “I told them that the DLA covered the mobility side of our needs for transport and also medical needs,” he says. “We were told that we couldn’t appeal the ruling and the final decision was made by the manager of their office.”

They are not alone in this. Papworth Trust’s research showed the number of people applying for DHP was forcing councils to include disability benefits such as Disability Living Allowance (DLA) when calculating people’s income, despite the fact DLA is designed to pay for the extra costs of disability. (Disabled people spend on average £500 a month on things related to their disability.) Disabled people were always disproportionately hit by the bedroom tax. The way local authorities have viewed being in receipt of DLA as a sign of not needing help with rent has further resulted in disabled people being perversely penalised for being disabled.

This has come at a time when DLA claimants – now beginning to apply for the much-criticised Personal Independence Payment – are facing deteriorating financial conditions. Some 3.25 million DLA claimants will be £1,000 worse off between 2010 and 2017, due to the way benefits are now uprated, according to Scope’s research on disabled people’s living standards released today. It was only last week that the overall spending cap for social security – including DLA – was voted in (pensions were protected but benefits for disabled people notably weren’t). Disabled people are already twice as likely to live in poverty than non-disabled people, even without taking the extra costs of disability into account. The cuts of the last 12 months did not come to people sitting comfortably.

Pamela and Jim were told their house would be repossessed even before their third application for a DHP had been processed. They received no warning an eviction notice was coming (something their legal advisor says breeched the pre-action for eviction of tenants by social housing providers). “It’s flown straight to court dates,” Jim says. “[Our housing association] claim that a [warning] letter was sent out to us…but we never received it.”

They were rejected for the DHP anyway. They were told, as before, they had too much income due to their disability benefits and spent too much. They called the housing association but got little help.

“During the phone call the finance manager sounded pretty sarcastic,” Jim says. “She accused us of holding money back and [that we were] putting it aside and not giving it to them.”

“The stress is unbelievable,” he says. “All through this it’s been very painful and has made us as many others no doubt feel vulnerable. We do agree with changes but not in the way the government has gone about it and the way the weakest have been targeted. We’ve been put in a situation that makes us feel lost. Trying to keep this from our daughter is hard but we don't want our feelings to affect her or her schooling. It’s all very ugly."

Sarah tells me that the past year has just worn her down even more, when we speak for a final time. “I don’t buy into the idea that being on benefits is a lifestyle choice,” she says. “I’d much prefer to be in my old £38k job, with a life of hope ahead of me, instead of worrying about how to make half a loaf of bread an onion and half a bottle of ketchup into an evening meal.”

*some names have been changed