I’d like to begin this post with a heartfelt message to all of you out there. You may have noticed that, a mere few weeks ago, we published our first book. It is called Eat It Anyway (we shortened the title after some toing and froing) and it is forever available in all good book shops, and in somewhat sickening audiobook form. In the past three weeks, we’ve been on the front cover of a national magazine; appeared on daytime television (god bless Lorraine the BABE); celebrated a book launch complete with personally branded cupcakes; partaken in almost 20 interviews; made two parents cry (with happiness); hosted a supperclub for 25 people and raised £400 for eating disorder charity B-eat. And worked our full time jobs, occasionally spoke to our boyfriends, cleaned the toilet bowl e.t.c. e.t.c. Safe to say it’s been one seismic, sensational blur. Of course we are eternally grateful to all the media honchos and #influencers who propelled us into the limelight and championed our cause, but by far, our deepest, aching gratitude is reserved for you guys.
The Instagram DMs, the 239 character Tweets, the emails containing a single sentence, and the – slightly creepy – LinkedIn messages. Each one of them telling of the relief and comfort they found within the pages of our book. Every message is worth its weight in gold; powering us through the most miserable arse-hole of days. At the risk of naval gazing, more than one reader has told us in no uncertain terms that the book has changed their life. To read those words is an experience of magical proportions. So, thank you.
But amongst the heart-warming love letters were a handful that brought me back to bleak British soil with an almighty crash. The reality is, whilst we are up in the clouds, rubbing shoulders with ITV news presenters and was-on-Ready-Steady-Cook-once chefs, millions of people, afflicted with my illness, remain stuck amongst the thorns without a single tender hand to wrench them out. It’s great that perhaps, because of our book, more people will know what is meant by an eating disorder, or perhaps feel a little freer to dive into the bread-basket. But it doesn’t stop this vindictive, life-wrecking illness from tangling more and more individuals into its sticky web. The most arresting tweet was one that came this week, informing me of the story of ‘E’, who has suffered with anorexia and other mental health conditions for 30 years. Her condition is now critical, and she is facing inpatient care – similar to the hospital treatment I endured three and a half years ago. But there was one fundamental difference between E’s illnesses and my own; I could afford to be ill, whereas she could not. I subsequently landed on her Go Fund Me page. It sent chills down my spine.
‘While she recovers from anorexia as an inpatient, E needs your help. Keeping things ticking over for one month (rent and bills) costs about £600. So we’d like to cover E for 4 months, meaning we need to raise £2,400. If E is discharged earlier than this, any extra money will go towards building her depleted savings back up.’
On further investigation it would seem that hundreds of Go Fund Me pages had been set up for E’s elsewhere, all of whom were desperate for treatment, and financially, left all out of options. Having lived at home – rent free – throughout my illness, my financial worries extended to whether or not I could afford a new pair of – slightly bigger – jeans, given that my income was now non existent. Bills, food shopping, a roof over my head – none were even so much as a consideration. What a naïve bastard I was. Especially as of course, I am far from the norm.
‘Three times as many adults with a mental health problem report money problems than those without,’ says Vicki Nash, Head of Policy and Campaigns at Mind.
‘Periods of poor mental health can lead you to struggle to pay bills and other financial difficulties, particularly if you have to take time off work.’
So what if, like E, I’d have had no long-suffering mother to keep me in a heated, clean house with running water, and attempt to feed me calorific pots of ice cream? What happens if, as is the case for so many, you find yourself entirely alone? Well, I have scoured the Internet – and nagged a significant number of charities/advisory services to present to you your options.
BENEFITS
Statutory sick pay: If you work, are on a permanent contract and have been off sick for more than four days in a 28 week period, you are entitled to a minimum weekly amount of £92.05. Most employers have schemes in place and may even pay more.
Personal Independence Payment (formerly Disability Living Allowance): This is the recently revamped Disability Living that doesn’t depend on your income. Once you apply, there are several forms to fill out to ensure you really are anorexic/bulimic and unable to work full-time. Don’t ask me what this involves. During those three months you won’t receive a penny, but if you do ‘pass’ (every cloud) all the tests, you’ll receive payments of roughly £70 per day, depending on how ‘incapacitated’ you are deemed to be. There is also a mobility allowance, which may be worth claiming if you have to get to and from hospital appointments, and your weight is too low for you to drive (it is illegal under a certain BMI). It’s a bit of a ball-ache, you must first call to start a new claim for PIP (0800 917 2222 or 0800 917 7777). Then you’re asked to complete another form in which family members are encouraged to provide written contributions to support the claim. Next, a health professional will invite you for a face-to-face assessment, before a decision is eventually made. In some cases however, the authorities deem enough information is given via the forms and won’t need to send a health professional. The payments will continue to be paid during a stay in hospital or hospice. For those who are very, very physically sick – and their condition considered to be terminal – the process can be fast-tracked. Call these numbers instead: 0800 917 2222 (England, Wales & Scotland) or 0800 012 1573 (Northern Ireland).
Disabled Student Allowance: This is not dependent on your household income and includes financial help for travel costs, computers and laptops, educational trips, books and anything else that a student might need (NOT BEER). There’s also a non-medical helper allowance for those who might need an extra nurse or support worker. The ‘general allowance’ (for general costs, there is a specific travel allowance) is a maximum of £1385 per year for those starting a course in 2018/19, and £1424 if you begin the course next year. Travel costs are ad-hoc, dependent on a specific disability. It applies to both undergraduates and postgraduates so long as you’re a British student and not already enrolled in the NHS disability scheme. UCAS have a handy guide and direct you to the application forms.
Employment & Support Allowance (Universal Credit in some areas): Designed for those who worked for a long time and paid national insurance, this payment is not based on household income, savings or your personal income. There are two types; contribution-related ESA and income-related ESA. If you don’t qualify for contribution-based ESA (perhaps you are still working part-time), you may qualify for income-related ESA if you have a small amount of savings/income. There’s an assessment period of 13 weeks in which you’ll have to undergo a medical assessment by a DWP worker. Depending on the results of the examination, you may be asked to attend work activity support groups designed to prepare you to get back to work. The allowance is as follows: £73.10 a week for single people over the age of 25, £57.90 a week for single people under the age of 25 during the 13 week assessment period, it then increases for those under 25 to £73.10 per week. It is £114.85 a week for couples. The charity Mental Health and Money has a great guide to ESA and will take you through the application process.
Carer’s Allowance: If a parent, friend, partner or loved-one has had to take a considerable amount of time off work in order to look after you, they are probably entitled to a care allowance. If they care for you for more than 35 hours per week and you’re also receiving PIP. Although it doesn’t depend on savings (although double check this), the carer can’t earn more than £116 per week in order to qualify for the benefit. The amount, unfortunately, is pitiful: just £64.60 per week.You can claim online (https://www.gov.uk/carers-allowance/how-to-claim) or call 0800 88 22 00 if you’re in England, and see NI Direct’s website if you’re in Northern Ireland.
Healthcare costs: You are entitled to financial help with prescriptions, wigs, glasses and other healthcare costs if you earn less than £16,000 per year and you’re not already receiving Employment and Support allowance. The NHS have a great guide to applying.
IF YOU’RE STILL WORKING BUT EARNING FA
If you’re still putting the hours in but end up penniless at the end of the month because literally no one pays their staff properly anymore, you might still be entitled to extra benefits, as well as PIP. The most relevant would be income support for carers or those who have children under the age of five. It’s about £70 per week if you’re over 25, and around £53 if you’re under 25. However you could be entitled to more if you’re disabled. Due to the Government shake-up, many of these benefits are now grouped together as part of the Universal Credit system, meaning that they may pay all benefits in one lump sum. Money Saving Expert has a great guide on their website.
HOUSING
Universal credit is available to support your living costs, but does not include your council tax. However you can still apply for a council tax reduction through Universal Credit. Some councils can waiver the tax for a certain period of time, depending on circumstances, so it’s worth asking. Generally speaking, if you’re under 35, you’ll get enough to rent a room in a shared house or flat. But if you’re in social housing, the benefit may cover the entire rent.
If you’re lucky enough to have bagged a mortgage (lol), don’t fear – there are options available. Firstly, it might be worth contacting the building society directly and explaining your situation. Eva Musby – a mother of a child with Anorexia who writes a very helpful blog – recalls fellow carers who have had their mortgage wavered for a number of months by the extremely kind building society staff. If you don’t ask, you don’t get right? Otherwise, UC will pay some of the interest part of a mortgage up to the value of £200,000, for the loan. It will not, however, cover repayments. You may have to switch to an interest-only mortgage for a time period. Also, there are currently delays of nine months between application and receiving an initial payment so get on it pronto. You can apply for Universal Credit housing benefits via the Government’s website, but some of the instructions can be quite confusing. There’s a helpful guide including links to the appropriate forms on the Citizen’s Advice website.
EXCEPTIONS
- You have other earnings/savings (it may not mean you don’t qualify for anything, but the amount you get could be reduced).
- You are 18-21 years old
- The local council thinks you have more bedrooms than you need (good old bedroom tax – nice one Dave)
- There is another adult living with you who isn’t also unable to work due to a disability (the money you get towards rent will be reduced by about £72 per non-dependent adult who lives with you)
WHO TO CALL
MIND: The mental health charity have a fantastic team of dedicated staff on the end of the phone lines to advise you on all sorts of legal, financial and health issues. Vicky Nash explains: ‘“Many of our local Minds in England and Wales offer practical support and advocacy over issues such as benefits, finances and employment. Mind’s website has a dedicated team of support staff for addressing money issues. Mind also has a confidential information and support line, Mind Infoline, available on 0300 123 3393 (lines open 9am – 6pm, Monday – Friday).” There’s also a legal line (0300 466 6463; legal@mind.org.uk) who can help with anything related to human rights, hospital treatment and complaints to services.
CITIZEN’S ADVICE: The Citizen’s Advice Bureau is a fantastic resource, offering detailed explanations on the benefits system, NHS healthcare services in your area, patient rights and your entitlements as an employee. Their website is pretty extensive, but you can also give them a call, and one of their team will assess your individual situation and take you through your options. It’s a brilliant, free service; use it!
TURN2US: These guys have a great calculator for you to work out exactly how much you’re entitled to including any charitable grants that might be relatively unknown and not widely publicised.
CARERS UK: More for the benefit of loved ones, but this brilliant charity can help an exhausted carer to take some much needed time off – and install someone else for a couple of days – which can only be a great thing for both carer and patient.
YOUR GP: Unfortunately, they are your first port of call for access to any of these secondary care services and will be most knowledgeable about what is available in your local area. Make a detailed list of all thing questions you want to ask before the appointment to make best use of your allocated 12 minutes.
MENTAL HEALTH AND MONEY ADVICE: The resource for most of the information in this article – clear, understandable instructions and guides for everything mental health related, when it comes to money. The website also guides you though appealing decisions if funds are denied unfairly.
MONEY SAVING EXPERT: Martin Lewis – you know the guy that’s on t’ele always going on about claiming compensation when you’re flight’s delayed – is an absolute babe. He’s created an entire arm of his Money Saving Expert website for people with mental health problems. He has a great free, downloadable booklet to help you escape from gruesome debts.
US: Okay so we’re clearly not accountants BUT we’d much rather you came to us than you sought the advice of some instagram loanshark who offers you a ‘free’ £5000 in exchange for £10,000 two years later… As part of my day job, I am lucky enough to have access to some of the UK’s leading health and social care professionals who are all over this shit like a rash. And, as they say, sharing is caring.