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Cancelling Hospital Appointments for the Queen’s Funeral is Cruel to Disabled People

Earlier this week, an OpenDemocracy article revealed that thousands of people would be impacted by the cancellation of all hospital appointments and non-urgent surgeries that fell on the date of the Queen’s funeral. 

At a time when hospital waiting lists are at an all-time high, with almost 6.8 million people waiting for appointments – 377,000 of those patients having waited for more than a year – such a drastic decision feels completely unjustifiable. One thing is for sure, though – those affected will mourn their cancelled surgeries, appointments and treatments far more than they will mourn the Queen.

The 19th of September, for me, was a glimmer of hope – a sense of light at the end of a long, dark tunnel. After two years of pushing for answers, I was finally going to have my first cystoscopy, and my second laparoscopy to explore my chronic bladder pain and ever-worsening endometriosis. At just twenty-one, I have been in chemical menopause for over a year due to multiple failures to properly manage my condition, and this surgery was the turning point I have been desperately waiting for. 

At this point, I am just desperate for something – anything at all – that will give me answers. That will give me something to work from. An explanation. A break – even if it is just for a while – from the constant unknowing, the obsessing over every new symptom, the relentless cycle that is dealing with chronic illness. But now the funeral of one wealthy woman has taken that little glimmer away from not just me – but from thousands upon thousands of people who were likely placing all their hope and faith in one appointment. 

This country is in a time of crisis, in more ways than just one. People are choosing between heating their homes and feeding their families. GP appointments are a rarity, as people across the UK struggle to access basic healthcare. 

People cannot afford to live – we’re barely able to afford to survive. Yet somehow pouring what is already reported to be billions of pounds into one funeral is justifiable? 

This all just feels like one big cruel joke. 

Rescheduling these appointments is not a matter of just pushing things back a day or two. This disruption will add weeks of uncertainty and suffering to the already inhumane amount of time patients have endured at the hands of a broken NHS and a thoughtless Government. It will only further contribute to an ever-growing backlog of patients on waiting lists. 

Regardless of your views on the monarchy – whether you love them or hate them – it is simply absurd and offensive to suggest this is an acceptable decision to make in the name of “respect”. Once again, the lives of the chronically ill and disabled have been totally disregarded to accommodate the wealthy, with absolutely no signs of remorse. 

Where is the respect for our lives?

Sophie, age 30, is one of many patients who has been impacted by the disruption to hospital services. “I was referred to ob/gyn by my GP eight months ago, and I was scheduled to have a video consultation on Monday lunchtime. Being referred for an internal body issue, I can’t imagine there is much a specialist can do via video call so I was expecting that I would already have to wait another few months after that to actually be seen in person.”

“I’m frustrated that I can’t have my video consultation as it’s just delaying things even more, but I don’t really know if there is anyone I can take my frustrations out on. I also feel that because it was only a first consultation, there are others across the country with far more serious conditions that are being delayed and not getting what they need.”

“Me and my husband are starting to make plans for a family, and it makes me feel anxious that if we do find anything sinister, perhaps catching it earlier would have made a difference.”

June* has also been affected by the last-minute cancellations in accommodation of the Queen’s funeral. “Mine was a chemotherapy appointment for Stage 3 non-Hodgkin’s lymphoma.” She told me that she has been stuck on waiting lists since June this year. 

“The change to my appointment means my treatment course will finish later, and will impact pre-paid travel plans.” 

“This will also change care plans for my mum. It really is a miserable situation. My mum has her own appointment with oncology on Monday, but that is still going forward!”  

What is most upsetting about these stories is that, as isolating as it may feel to the individuals suffering, these are not isolated cases. All patients who have had appointments or surgeries cancelled as a result of the Queen’s funeral will feel this pain, anxiety, and mourning regardless of where they are in their treatment journeys. 

As now-King Charles steps forwards into his new role, the rest of us are thrust multiple steps backwards.  We are left once again in the dark about our futures, our conditions, and our access to desperately needed healthcare.

My question is, where do we draw the line? This is not a matter of being pro or anti-monarchy, it is a matter of logic – and it is simply illogical to believe that such drastic cancellations and closures across the country are remotely respectable or appropriate. 

This country has been in a state of mourning for a long time – not for the Queen or the increasingly controversial presence of the monarchy, but for the people constantly overlooked and left behind in its wake. What more will it take for this country to recognise just how little “respect” these establishments have for the lives that need it most? 

When disabled and chronically ill folk can access acceptable standards of care, families can feed their children and people can heat their homes without experiencing all-consuming anxiety, then – and ONLY then – should we feel it acceptable to go to such lengthy measures to honour a funeral.

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The State Of This: How Much is the New PM Going to Screw Disabled People?

We don’t know about you, but it feels like the world is slowly imploding and with all the chaos going on, it can be quite tricky to keep up with it all. And news affecting the disabled community seems to fall between the cracks. So we decided to do something about it. Rather than rage to each other in WhatsApp, we (Rachel, your Editor-in-Chief and Cath, your Deputy Editor) decided to do something about it. 

And so this column was born; “The State of This”, because well, have you seen the state of it all?

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The Disabled Cost of Living: The DWP is Crushing my Dreams of Living With my Partner

Millions of people are currently struggling to heat their homes, pay their bills and afford food in the toughest Cost of Living Crisis the UK has seen in 30 years. In our new series, The Disabled Cost of Living, we will hear how disabled people are disproportionately affected, due to their lives already costing more and being valued as less.


The cost of living crisis has impacted most of our lives at this point, whether it be rising energy prices, fuel costs, rent or food, our monthly bills just keep rising and rising.

This has a very immediate effect in that for many of us our money isn’t stretching as far, and some are ending up in debt, but for me there is also a more long-term effect. 

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The Disabled Cost of Living: Food Shopping is Even Harder When You’re Gluten Free

Millions of people are currently struggling to heat their homes, pay their bills and afford food in the toughest Cost of Living Crisis the UK has seen in 30 years. In our new series, The Disabled Cost of Living, we will hear how disabled people are disproportionately affected, due to their lives already costing more and being valued as less.


During the current cost of living crisis, the price of everyday basics seems daunting enough, without having to navigate a specialist diet alongside it. Yet, the everyday truth for those of us who medically must eat these specialist foods is that our lives are even more expensive. 

The fact is that the cost of a free-from diet is higher than its non-free from counterpart. This becomes all the more frustrating when you remember that this is not a way of life that is chosen, but rather one that is medically prescribed.

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Channel 4 is an Essential Platform for Disabled People, we Can’t Allow it to be Privatised

Selling off Channel 4, a profit-making publicly-owned asset, makes no sense. This move puts jobs, small businesses and popular TV shows at risk. It also risks the exceptional work Channel 4 has done to create a path for disabled voices, stories and talent.

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Jamie Oliver’s Food “Campaigning” Will hit Working Class Kids Hardest – yet Again

Trigger warning: This article contains discussion of eating disorders.


Ahh, Jamie Oliver. The Naked Chef. The school meals guy. The anti-Jack Monroe. Turning up at Downing Street with what is actually a pretty rubbish pun of “Eton Mess” because of a Boris U-Turn on legislation that would force supermarkets to not do 2 for 1 deals on junk food items. During a cost of living crisis.

You may remember Oliver from such spectacular cultural moments as that time he showed kids what was in chicken nuggets and then looked despondent when they said they’d all still eat them, and for his crusade against turkey twizzlers. Jamie first had an impact on my life way back in the mid-00s with his school dinners campaign, when 12-year-old me rocked up to find there would only be chips on one day each week.

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Disabled People’s Ambitions are Crushed by Savings Caps on Social Care

Often when social care is talked about in the media and by politicians, they portray an image of care homes, residents near the end of their life, elderly people being made cups of tea. But what about those of us who need care from a young age? Who need social care to support us with work, to meet up with friends, to travel, to party? Where are we in this out-dated narrative, the young and aspiring?

The truth is, we’re forgotten about, and the system penalises us too.

Carers or PAs are an essential part of my everyday life. They support me with washing, dressing, using the toilet and preparing meals – and I’m not alone. 

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The Disabled Cost of Living: Dealing With the Cost of Living Crisis, One Day at a Time

Millions of people are currently struggling to heat their homes, pay their bills and afford food in the toughest Cost of Living Crisis the UK has seen in 30 years. In our new series, The Disabled Cost of Living, we will hear how disabled people are disproportionately affected, due to their lives already costing more and being valued as less.


I spent most of the drive from my partner’s house to my flat thinking of all the things I could do with the backpay.

A holiday? A whole new wardrobe? A new computer?

Well, not quite. I was daydreaming about paying off debt, an unbroken bed frame and name-brand chicken nuggets. Not quite the luxuries that mainstream media peddles that benefit users get. But a cushion of some kind, a safety net.

But then I had to look at the news.

The rising cost of bills. The ticking clock of climate change. Petrol prices peaking. Cuts to benefits and cold-weather discounts. The cost of living crisis. 

Goodbye safety net.

It’s interesting, trying to get money advice as a mostly housebound disabled person.

I don’t go out clubbing and pay for expensive cocktails. My clothing brand of choice is secondhand. I don’t think I’ve ever even tasted an Avocado let alone put it on toast so that should have saved me already, surely.

When my conditions flare up so badly I’m stuck in bed for days at a time, at least I only have to worry about one room!

Most days start with my cat waking me up for breakfast. Her night shift as my free, furry hot water bottle has ended and now she’s my alarm clock. I make myself an iced coffee for my breakfast and she steals the straw when I’m done. It’s a cheap toy, at least. 

I probably have two different panic attacks before noon.

There’s no way I can afford to pay someone to come in and help me round the house but carer’s allowance goes to friends and family that help, so at least they get compensated.

Help in the shower becomes a bonding, sweet experience with music and jokes and shower stools. Scrubbing the kitchen down is when I sit and gossip with my mum. Those moments don’t cost money – as long as I don’t look at my bank account and the direct debits.

When stress about the future is a constant thought, you get practice at shutting it out. Living as a disabled person can cost you an extra few hundred pounds you don’t have, but there’s a new cake show on Netflix! And streaming services split between three people is almost affordable, right?

Paper plates and cutlery are cheap in the supermarket and hey, that saves both physical energy and hot water energy. And if you don’t want to turn the oven on then call a cold dinner a charcuterie board and then it’s by choice.

Warmer weather is creeping in, so a lunch of breadsticks and cream cheese can be eaten outside on a blanket – then it’s a picnic! You can even Instagram it to make it seem like your life is together and trendy. The rich make poverty an aesthetic so why not do it while you’re living it? 

Instant 13p noodles don’t seem so depressing when you make it your little nighttime routine with matching mugs and old anime. And the fairy lights aren’t because batteries are cheaper than your bills, it’s just mood lighting.

Denial. It’s the breadline’s best friend.

What else can I do? It’s easy to say to learn to budget better when you’re not living payday to payday. It’s harder when you’ve spent most of your life expecting not to make it this far and now you’re disabled, staring at your rapidly approaching 30s and there’s no support.

So, denial.

I ignore the post piling up by the front door for days at a time. I watch online TV shows and think about which subscription I should cancel. I eat another packet of crisps and a sandwich and think if it’s worth spending my last tenner on a kebab delivery because it’s probably cheaper than using the oven.

I use twitter and think about the news of ministers getting pay rises while I’ve not had my radiators on all winter.

I scroll through TikTok and think about the life the influencer must live before she gets online and says that “not eating at Greggs can save you enough money for a house deposit”. I look at the few treats in my life and wonder if they’re worth sacrificing for savings when there’s always an emergency to pay for.

A taxi trip to the hospital, a replacement mobility aid, helping a friend get food, forgotten debts coming through the mail.

I look at how many other disabled people are facing the cost of living crisis and think how nice it would be to have a snappy one liner to help us all. Just one new trick to pull us all out of poverty.

How often I already share links for DWP advances, council emergency grants, charities to help apply for benefits, places that give out food bank vouchers. I know what brands to shop to get two bags of shopping for a tenner. I know what you should say to get the right points for your PIP appeal. 

I know the only real help I’m getting is from other disabled people in the same boat as I am. I know it’s not enough. 

I know how to put words to paper so hopefully people will understand. I don’t know if the right people are going to listen. I know I am just one voice amidst thousands who are facing this crisis.

The cost of living crisis. The lack of dignity crisis. The no care in the country crisis. The wrong people in power crisis.

I take medication to make me sleep and still wake up in the night, panic at my throat. I hope for a few hours of unbroken sleep. I hope for better headlines when I wake up.

And the next day I do it all again.


Resources

Citizen’s Advice has lots of great guides but these two in particular:

If you’re struggling with living costs gives advice on how you can get help paying for food, rent, what benefits you may be entitled to and how to get help from your local council.

Using a food bank gives details on what to do if you have no money for food, if you’re shielding or self isolating, getting a referral to a Trussell Trust food bank, going to a food bank and what to do if you need to use one again.

Turn2Us Benefits Calculator can help you find out what you may be entitled to claim and also gives a detailed explanation of each different benefit.

The Social Fund covers cold weather payments, winter fuel payments, funeral payments and the Sure Start Maternity Grant that you may be eligible for.

If you are on certain benefits you may also qualify for a Budgeting Loan to help you buy furniture, pay rent, travel costs, clothes and other thins

Jack Monroe’s blog is full of actual money saving recipes that are easy to cook and fully costed. None of that just eat dried pasta bullshit.

Shout is a confidential mental health support service that is available via text. Free, 24/7. Text “SHOUT” to 85258.


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The Disabled Cost of Living: How Those Most Vulnerable are Disproportionately Affected

Millions of people are currently struggling to heat their homes, pay their bills and afford food in the toughest Cost of Living Crisis the UK has seen in 30 years. In our new series, The Disabled Cost of Living, we will hear how disabled people are disproportionately affected, due to their lives already costing more and being valued as less.


Recent figures published by Scope suggest that disabled people were more than twice as likely to be unable to heat their homes. They were 3 times as likely to not have been able to afford food. Among disabled people whose living costs have increased over the past 3 months, 47% have said rising prices had a worsening effect on their long-standing health condition. I feel this is not news to us.

National Insurance payments are increasing, so those who earn less are now contributing more before they receive their wage. The rate is now 8.75% and it applies to those who earn more than £9,880

Energy prices are increasing as part of what has been dubbed the ‘Cost of Living Crisis’, the reliance on other countries for energy has not helped the costs, but this crisis was in motion before Russia’s invasion of Ukraine. Disabled people who may require to use electric, gas or other forms of energy more due to their health conditions, will have less money to do so.

The standard charge by companies for supplying utilities per unit has increased 54%. The more units you use, the more you will have to pay.

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GCSE Requirements for University are Further Proof the Government Hates Disabled People

Trigger warning: COVID deaths, ableism in the education system and being excluded from it.


In their latest brainwave to get the public on side after a colossal series of blunders that have made us a worldwide laughing stock, the government have announced plans to shake up higher education, in a response to the Augar Review of Post-18 Education and Funding.

The plans (first reported in The Daily Telegraph) suggest minimum entry requirements for university students in a bid to get rid of “low-quality courses”, which they hope will reduce student numbers and see more people doing options such as apprenticeships.