Survival of the Crip-est

In a matter of weeks life across the world has changed dramatically, and like most people I’ve been trying to adapt to the uncertain times ahead. While many people are focused on navigating the challenges of home working, home schooling, increasing social restrictions and living with uncertainty, I, like many disabled people, have been focused simply on survival.

I realise that for many non-disabled people it might be hard to appreciate what I mean by ‘survival’ and how this differs from what everyone else is experiencing. So, this post is a breakdown of the hours I’ve spent trying to ensure that my basic requirements are in place. These fit into five broad categories: safety, medical, nutrition, logistics and finance.

In the last five days I’ve done approximately 36 hours of extra work related to disability and COVID-19 – all this while also trying to keep on top of other essential work.

Image Description: A detailed hand drawn digital image illustrating the extra work Touretteshero undertook in one week related to Disability and the Covid-19 pandemic. At the centre of the image is the word survival and the number 36 in yellow this is the hours of extra labour. There are five titles in different colours around the 36 these are Safety in red, Logistics in purple, medical in blue, nutrition in green and financial in orange. There are small illustrations that link to these areas including: personal protective equipment, a carer ID card and a medicine bottle.

Here’s how this breaks down:

Safety – 20.5 hours
As a wheelchair user who needs close physical support in order to complete basic tasks, I’m not able to practice social distancing in the same way as non-disabled people. This puts me and my support team at greater risk from passing on the virus.

This is especially risky if I become unwell. I employ my support workers and I have a duty of care to them to make sure that they have the right equipment to do their jobs as safely as possible.

Other disabled people have written about the lack of Personal Protective Equipment (PPE) for health and social care workers providing care in people’s homes. There is no coordinated plan for this. I’ve spent in excess of 12 hours trying to get the safety equipment my care team and I need.

This has included calling my GP, the practice and district nursing teams, my occupational therapist, special care dentist, the local pharmacist and numerous equipment suppliers. Everybody understood the issue straight away, but so far, no reliable way of getting what we need has been established. Yesterday I was at last able to buy some equipment privately, but I have no idea if it will be effective, or when it will arrive. And many people can’t afford this option.

In non-pandemic times I rely on disposable gloves and aprons for when my support workers are helping me with personal care, like washing or using a catheter. But these basic resources are now in short supply and almost impossible to get hold of. My occupational therapist very kindly brought round half a box of gloves that he had in his office which, to me, is indicative of how desperate the situation is, and how kind and pragmatic people are being in the midst of these challenges.

In addition to sourcing PPE I also spent 5.5 hours making adaptations to my home in order for me and my support team to live in it more safely during this time. This included things like buying a motion-sensor bin, reorganising rooms so I can move through them more easily, and making sure that essential cleaning supplies were at hand in an emergency, but not easy to reach impulsively.

I spent at least 3 hours researching the Coronavirus Bill and writing to my MP to express concern over the obliteration of disabled people’s right to social care. Without 24-hour support I’m at serious risk of harm and this emergency legislation removes my right to have these requirements assessed and met. This is happening at precisely the time when many disabled people need increased social care support and when family support systems may suddenly become unavailable. For example, my sister has always been my emergency back-up if any of my support workers are sick, but because she’s a hospital doctor and I have additional risk factors it’s no longer safe for us to spend time together.

Medical – 6.5 hours
I spent roughly 1.5 hours this week organising access to essential medications and prescriptions and around 5 hours in relation to the National Institute of Clinical Excellence’s guidelines on COVID-19 that were published at the start of the week. This is guidance on how to identify which treatment options should be offered to which patients, who should be considered for more invasive lifesaving interventions, and who should receive palliative care.

I completely understand the need for these guidelines and appreciate that they were drawn up incredibly quickly. It’s good that there seems to be a willingness to be transparent about the hard decisions ahead, but there were elements of these guidelines that ring alarm bells for many disabled people.

An area of considerable concern is the use within the guidelines of the clinical ‘frailty scale’. This is a tool designed and tested with over 65’s in mind. This scale, from 1-10, is used to decide who stands the best chance of surviving treatment – 1 being very healthy and 10 being terminally ill. The guidance suggests that people with a score of five and above may not benefit from invasive treatment. I suspect most doctors would score me as a 7. This would not be based on my medical requirements but on how much support I need day to day.

A key element of this scale is how independently you can complete everyday tasks like housework or personal care. The scale has images as well as words, and the only wheelchair user depicted is 7 on the scale. Disabled artist Jamie Hale has written an excellent piece outlining the key issues here.

Like many disabled people I’ve had some difficult experiences in health-care settings with people making assumptions about my quality of life and my physical and mental capacity, based on how I look. Some of these issues have only been identified because my sister’s been with me and has spotted what’s happening. I’ve sat completely clueless while my sister’s argued fiercely with other doctors about scores they’ve given me.

When she’s with me at appointments, I’ve noticed she tends to list all my achievements at the start. To some this might seem odd or boastful (she doesn’t do this in any other context) but I know what she’s doing is trying to establish my ‘capability and worth’ in ways medics will understand. The fact that she needs to do this, even in non-pandemic times, does not bode well for decisions that will be made about the value of disabled people’s lives now.

I spent five hours reading the guidelines and talking them through with my sister, and we agreed that I should complete a Hospital Passport that gives a clear, accurate view of my health conditions and treatment wishes. While some of my non-disabled friends were doing a morning workout with their kids, Claire and I were writing a document that in a worst-case scenario could help save my life.

The sad reality is that doctors need to make difficult choices about who receives life-saving care and who doesn’t. My only wish is that these decisions are made on clinical need, and not on how much support people need to have a wee or keep their homes clean.

NICE went on to issue clarification, making it clear that the ‘frailty scale’ was untested in under 65’s and was likely to disadvantage younger disabled people. It’s great that they have done this but there’s still a risk that is fast moving situation, doctors might misinterpret it.

Nutrition – 3 hours (before I gave up)
I’ve been a regular Sainsbury’s customer for at least fifteen years. As a wheelchair user with Tourettes and chronic pain and fatigue, I’ve relied on online deliveries for pretty much all of that time. Online shopping’s been revolutionary, allowing me to access food independently, make choices about what I eat, and shop without the risk of ridicule or abuse.

Not surprisingly the pandemic’s led to a very high demand for home delivery slots. I was initially pleased to read that Sainsbury’s (and the other large supermarkets) were prioritising deliveries to older and disabled people. But in reality, letting them know you require this service is pretty much impossible, particularly if you have a condition that makes using the phone more difficult.

A screenshot of a tweet reading: Sainsburys thanks for the email saying how you will prioritise people needing delivery. I’m a longstanding disabled customer but I’ve never heard of the vulnerable customer helpline, how do we contact them? What’s the email for those who have communication impairments or are Deaf?A screenshot of a message to sainsbury's saying: 'I have a communication impairment and find hard to speak on the phone is there no way of contacting you through text this is why I'm using messenger

So far, I’ve spent at least 3 hours trying to contact them to make sure they’re aware of my requirements, but to date I’ve got little response – phone lines are busy, and messages or tweets go largely unanswered. For the moment I’ve got enough support for one person to go to the shops while another person stays with me. But if any of us become unwell this will be a much trickier issue to deal with.

Many social service support plans are built on the assumption that home delivery services and microwave meals are readily available. I’m not sure if Sainsbury’s are aware of this fact. The current situation’s exposed a massive vulnerability in the system.

Even though access to food is a survival issue, I gave up after three hours because it wasn’t my most pressing requirement. But there will be many, many more people in this situation with a more urgent need for supplies and I really hope it can be resolved quickly.

Financial – 3 hours
I need 24-hour support from skilled support workers in order to be safe, independent and do the job I love. Forty hours a week of this support is funded by Access to Work (AtW). This funding goes straight to my employer who in turn pays my personal assistant Claire. I’ve had AtW support for over a decade and it’s kept me working while my support requirements have intensified. The amount of AtW support people can receive was capped back in 2015, and instead of being awarded support for three years my support now has to be renewed annually.

My current support agreement is due to end in April. Three weeks ago, as instructed, I applied for the renewal, but I’ve not yet had any response from an advisor.

I called at the start of the lockdown to try and establish how my support might be impacted. The person I spoke to at the call centre had no information and told me to continue to wait for a call. I asked if they had a contingency plan for if they weren’t able to process my claim in time and was told there wasn’t one!

Without AtW support I won’t be able to work, so I could lose my job, my financial stability and my independence. My PA Claire would also lose her job. And I’d be left with forty hours less support each week that social services would need to cover to avoid me being left at significant risk.

While many people face uncertainty around their jobs at the moment, my uncertainty isn’t being caused by my employer but by a systematic failure to plan for the requirements of disabled employees and their employers at this time.

I spent 3 hours trying to address my AtW concerns and next week, because this is still unresolved, it’s very likely to take even more.

Logistics – 3 hours 
Boris Johnson announced the formal lockdown of the UK on Tuesday, instructing everyone to stay at home unless they had a good reason to go out. I was extremely worried that my support crew, Claire, Erik and Leftwing Idiot, might get stopped and asked to explain why they were out.

I spent 3 hours researching and applying for ‘Carer’ ID cards for each of them, and I also photocopied a letter from social services that included my name and address and confirmation of my social care support package.

The cards arrived quickly, and the team all expressed relief at having them. You can find more information about this scheme and the Access Card Disabled that people can apply for here.

This is a long post at the end of a long week, and it’s taken me 4 hours to write. While it might not be the most gripping thing I’ve ever written, I’ve chosen to use my remaining energy today to make highlight all the extra work that many disabled people are having to do.

Please be patient with your disabled friends, family members or colleagues who may well be working extremely hard just to stay safe and have access to the medical care, food and money they need to survive.

This week’s shown me that there are many incredible people out there ready to be good allies – from my OT who hand-delivered the last disposable gloves he had, to my special-care dentist who talked me through the pros and cons of different PPE.

Thank you to everyone who’s putting in the hours to make sure that as many people survive this pandemic as is possible.

One Response to Survival of the Crip-est

  1. barbara.renel says:

    💕

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