Neil MacVicar was diagnosed with a brain tumour when he was just 25 years old, after suffering headaches, vertigo and fatigue.
At first his GP thought it was a bad earache, but during a trip home to Inverness in Scotland in November 2016 his symptoms worsened and he was admitted to hospital for tests that revealed a plum-sized tumour in the balance centre of his brain.
Neil, who was renting a flat in Islington, London at the time, stayed in Scotland while he underwent brain surgery on December 1, followed by more than six weeks of radiotherapy in January 2017.
But, not wanting to lose the room in the flat in London, he continued to pay rent.
It was in December 2016, shortly after his diagnosis, that Neil realised he would need financial help and applied for Universal Credit.
“It was incredibly scary for my family and friends [when he was diagnosed], when I phoned my friends I was just in tears on the phone to them,” he told The Sun Online.
“Then after the surgery it was a massive relief but I was in a lot of pain as well.
“I was told after my surgery that it was cancer, so I was referred for radiotherapy and that was really, really tough. I was on loads of anti-sickness medication and my mood was just terrible.”
Initially Neil, now 26, needed help paying his rent in London, which was £750, and income support – all encompassed under the Universal Credit system.
But the process turned out to be more difficult than he first thought.
The former bar tender was asked to visit the Job Centre in Inverness the week he came out of brain surgery.
While he should have been resting, Neil made the trip only to be told to come back in two hours when the person who could help him would be there.
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Explaining how he couldn’t come back as he’d just had brain surgery and needed to rest, Neil felt like his concerns, and health, weren’t taken seriously.
Taking matters into his own hands he decided to apply online, which took six gruelling hours – all while he was recovering from major surgery.
His application was submitted by the middle of December and he was told he was eligible for £780 a month – leaving him with just £30 after his rent was paid.
This was based on him living in Inverness, where he made the original claim, not his actual place of residence in London.
When he got back to London eight months later he submitted his rental agreement and other documents showing his monthly outgoings, but he was told his Universal Credit amount would be the same.
Thinking there must have been as mistake, Neil rang the Universal Credit help line only to be told “it’s not our fault you live in Islington” and “you are only 25 so just move back with your parents”.
All he was offered as extra help was a food voucher.
Neil was left feeling shocked, anxious and completely left down.
“When I was in Inverness I made the claim and they gave me the Inverness housing benefit, which is £300 a month, which was ridiculous,” he said.
“And they kept telling me ‘Why didn’t you apply when you were in London’ and I kept saying ‘I didn’t know I had a brain tumour in London, I thought I had an earache’ but they couldn’t really understand that.
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“I just assumed that was a clerical error so when I got back to London I submitted all my documents thinking that would just sort it all out and I’d get normal money and I’ll be able to survive.”
But his payments remained the same.
“I phoned them up and said ‘This doesn’t make any sense, I’ve got £30 a month to live on and I’m recovering from cancer, I can’t work at the moment’,” he said.
“They said ‘It’s not our fault you live in Islington’ and because I was 25 they said ‘Well, you’re under 26 you’re still a child you should just move back with your parents’, which was pretty horrible to hear.
“I had no idea how I was going to survive and it wasn’t my fault I was ill.
“Islington is not a cheap area, it wasn’t like I was living in a palace or anything, I was living in a two bedroom flat with a housemate.”
THOUSANDS OF CANCER PATIENTS LEFT WAITING FOR PAYMENTS, CHARITY WARNS
The charity is calling for flaws in the system to be fixed before 26,000 more people with the disease are moved onto it.
Current Universal Credit rules mean that cancer patients face a five-week wait before they receive any money at all, according to the charity.
MacMillan claims it even affects those with a terminal diagnosis, because the ‘fast track’ process for people with less than six months to live has been removed – so people with little time to live are waiting too long for payments.
The National Audit Office found around two in three people with health conditions or disabilities did not receive their first Universal Credit payment on time.
The side effects of cancer and its treatment can affect someone’s ability to work, the charity said.
As a result, cancer costs an average of £570 a month for the majority of patients, due to lost income and extra outgoings.
More than a quarter of those diagnosed have no savings to fall back on and less than of people with a long term health condition feel able to complete a Universal Credit application online, the charity said.
A Department for Work and Pensions spokesman said: “It is simply not true that the fast track process for terminally ill claimants has been removed under Universal Credit.
“We’re determined to ensure that people living with terminal illnesses get the support they need through this difficult time and this continues to include fast tracking Universal Credit claims for claimants with a life expectancy of less than six months.
“Claimants who are terminally ill and unable to make their claim for Universal Credit online, or attend a Jobcentre, are able to make their claim by telephone, or request a home or hospital visit.
“Universal Credit replaces an out-of-date, complex benefits system. We brought in improvements which include increasing advances to 100 per cent, removing the 7-day waiting period and paying people’s Housing Benefit for two weeks while they wait for the first UC payment, so no one needs to be without money during the first five weeks of a claim.”
On top of that, his first payment didn’t come through until the beginning of February – more than six weeks after his initial claim in December.
If it wasn’t for his £800 savings and the support of friends and family, he wouldn’t have been able to afford to live.
If that weren’t enough, the process of applying, on top of dealing with the life-changing diagnosis of a brain tumour, Neil didn’t feel like his health issues were taken seriously or that proper checks were in place.
He was told by an adviser he should apply for Personal Independence Payment – a payment to help those living with long term health conditions that’s not included under Universal Credit.
He scored zero on a 56 question survey, which included questions about his physical and mental health, and was told he was ineligible despite receiving treatment for extreme anxiety and depression brought on from his brain tumour treatment.
“I’m really scared that if this happens to someone who doesn’t have my support networks they’re going to be in real trouble,” he said.
“If it wasn’t for various friends and family I’d be homeless.”
Neil didn’t know where to turn next.
What is Universal Credit and why is it running into problems?
Universal Credit replaces the following benefits:
- Child Tax Credit
- Housing Benefit
- Income Support
- Income-based Jobseeker’s Allowance (JSA)
- Income-related Employment and Support Allowance (ESA)
- Working Tax Credit
The government claims around three million working households would see cash gains from Universal Credit.
Treasury officials said a couple with two children where one parent earns £30,000 a year would benefit by £425.
A single parent with one child and no housing costs earning £15,000 a year will get £170 more, officials claimed.
If you receive any of these benefits, you can’t claim Universal Credit at the same time – you will be moved to Universal Credit when it is introduced in your area.
Whether you can claim Universal Credit depends on where you live and your circumstances.
Currently, Universal Credit is mainly claimed by the unemployed, or those on a low income.
Former Work and Pensions Secretary Iain Duncan-Smith announced the introduction of a Universal Credit in 2010 designed to simplify the benefits system and improve work incentives – making it the landmark policy of his time in government.
Eight months after his operation and radiotherapy Neil moved back to London in June 2017 and started looking for work.
When he told the job centre he was looking for part time work he was told that once he started earning more than £192 a month he would lose 63p for every £1 of Universal Credit he was paid.
At this point Neil’s mental health was at an all-time low and he was struggling to deal with feeling like he didn’t have a purpose – he needed to work.
He eventually found a part time job for Hillside Clubhouse, a charity that helps people dealing with mental health problems navigate the complicated Universal Credit system – the same charity that helped him get back into the job market.
But as soon has he started working his benefits were cut to just £112 a month because he was now earning.
“I get penalised for working part time, but I get awful fatigue so I’m not ready for full time work yet,” he said.
“There is absolutely no support for people in my situation to gradually get back into work.
“I used to be a bar manager but I can’t do that work anymore because I’m partially deaf and I have various vertigo and movement issues, so I couldn’t do that job again.
“Trying to get into something new, there is no support for that which is awful.”
What to do if you have problems claiming Universal Credit
IF you're experiencing trouble applying for your Universal Credit, or the payments just don't cover costs, here are your options:
Apply for an advance – Claimants are able to get some cash within five days rather than waiting weeks for their first payment. But it's a loan which means the repayments will be automatically deducted from your future Universal Credit pay out.
Alternative Payment Arrangements– If you're falling behind on rent, you or your landlord may be able to apply for an APA which will get your payment sent directly to your landlord. You might also be able to change your payments to get them more frequently, or you can split the payments if you're part of a couple.
Budgeting Advance – You may be able to get help from the government to help with emergency household costs of up to £348 if you're single, £464 if you're part of a couple or £812 if you have children. These are only in cases like your cooker breaking down or for help getting a job. You'll have to repay the advance through your regular Universal Credit payments. You'll still have to repay the loan, even if you stop claiming for Universal Credit.
Cut your Council Tax – You might be able to get a discount on your Council Tax or be entitled to Discretionary Housing Payments if your payments aren't enough to cover your rent.
Foodbanks – If you're really hard up and struggling to buy food and toiletries, you can find your local foodbank who will provide you with help for free. You can find your nearest one on the Trussel Trust website.
Neil now earns £1,200 a month working three days a week for the charity.
He’s since moved to Highbury because the rent is cheaper, but that’s still £800 per month including all his bills.
By the time that is taken out of his earnings and Universal Credit payments, Neil is left with little over £500 spare cash a month – most of which he tries to save.
While it’s far better than the £30 he was originally expected to live on, Neil still cuts back on luxuries like going out to dinner with friends or holidays, because he simply cannot afford it.
“When I was offered a part time job I thought ‘Well I’m not going to get any benefits but I’m going to have a purpose to get out of bed’ and that was a real issue with my mental health,” he explained.
“That seemed more important than having any money.
“I can pay my rent now, but I don’t go out for dinner, I don’t have money for a holiday, I don’t often buy new clothes or anything like that.
“But I can afford to go food shopping now which is more than I could for the year before that.
“I live an incredibly cheap life because I’ve just got used to it.”
Neil is still having physiotherapy to help manage his vertigo, and has other ongoing issues from his brain tumour, but is in remission and had a clear scan this week.
The Department for Work and Pensions has been contacted about Neil's case and is looking into it.
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