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PIP descriptors self-logging template

So I started looking into whether I could claim PIP, and it turns out that because I have a fluctuating condition, the answer to this question is actually quite hard to work out! On my very worst days, I would qualify for both parts, and the higher payment for the daily living activities bit, but on my best days I score no points at all. Also, the rules around fluctuating conditions seem to be really complicated, and require you to know really quite precisely which category you fit into for how much of the time.

Also, the information I found from the CAB said, for fluctuating conditions, that it could be useful to keep a diary for a week or longer to gather evidence about how your abilities change over time, and how the different percentages work out.

Because I’m on a monitoring kick at the moment, I thought hey, this would be really useful to know, it’d only take me an hour or so to knock up a form to record it all, and only a little longer to make it into a template others can easily copy.

So, I did a template which can easily be copied. Here’s the description text from the beginning of the form, so you can see without clicking the link where I got my info from, and what the steps are to copy this over for your own use:

This form is created to help with repeated daily information gathering that is necessary for some PIP applications for fluctuating conditions. If you only need to complete these descriptors once, then it’s unlikely to be worth your time setting this up.

>>> SOURCES <<<

PIP descriptors copied on 13/02/14 from http://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

Information on fluctuating conditions: http://www.adviceguide.org.uk/wales/benefits_w/benefits_sick_or_disabled_people_and_carers_ew/benefits_personal_independence_payment_e/benefits_the_pip_assessment_e/pip_if_your_condition_fluctuates.htm

Information on carrying out activities reliably and the use of aids and appliances: http://www.adviceguide.org.uk/wales/benefits_w/benefits_sick_or_disabled_people_and_carers_ew/benefits_personal_independence_payment_e/benefits_the_pip_assessment_e/pip_the_disability_conditions.htm

The general CAB page on PIP with more information is here: http://www.adviceguide.org.uk/england/benefits_e/benefits_sick_or_disabled_people_and_carers_ew/benefits_personal_independence_payment_e.htm

All questions are marked as required, to help you avoid accidentally missing some descriptors and ending up with incomplete data.

>>> HOW TO COPY THIS FORM TO YOUR GOOGLE DRIVE AND CHANGE THE SHARING PERMISSIONS <<<

You need to complete two very simple steps to copy this form to your Drive folder and change the sharing permissions to ensure that your data are as secure as is possible on a Google server.

1: Make sure you are logged into the Drive folder that you want this form to be saved on. Open up the File menu and select Make a copy… Don’t check the box to share the copy with the same people that this form is shared with.

2: Check and if necessary change the sharing permissions by opening the File menu and selecting Add collaborators… In the pop up box you will be able to alter who can see the form however you want. If you will be doing all of the data recording and analysis yourself, then set the form to private. If a carer will be filling it in some or all of the days, you can either add their email to the list of approved collaborators, or set the form to Share with link, and send them the link by email.

>>> PLEASE BE CAREFUL WITH THIS TEMPLATE <<<

The way that Drive works, the only way that this can be made available as a template to be copied means leaving it open for anyone to edit or submit responses. I will not be reliably or regularly doing upkeep on this template, but if I see that any responses have been submitted, I will delete them, and if I catch any changes, I will try to change it back to it’s original design. So please, be careful to only make changes and submit responses once you have copied this over to your own Drive folders.

Here is the link to the form:

https://docs.google.com/forms/d/1J1pG1f1BbbhbWmvsFWKBcQwvIHbd8yOhcEohzVnyy50/edit

I hope this is useful :)

I can’t believe I didn’t think of this before. FAO #spoonies

So, I have a lot of symptoms to manage on a daily basis. I’ve been completely failing to do it, and any of the solutions I’ve looked at, like android apps, don’t seem to have had the particular things that I wanted to record.

For a while, I used the same app I was using to record my periods to record symptoms, but it was far from ideal. Really, I needed something bespoke, but the thought of putting something together always seemed like such a mountain to climb. It seemed impossible.

And then I had a brainwave, and I can’t believe I didn’t think of this before.

I’ve made myself a form in google drive using their fabulously simple WYSIWYG (what you see is what you get) creator. I can fill in the form from my mobile browser and it dumps all the data to a spreadsheet it automatically created while I was making the form. It automatically timestamps all the entries so I don’t even have to fill in the date, and means that should I create another form for specific events such as my dissociative seizures, I would just need to fill them in ASAP after the event and I would have a complete history of the seizures and their timings without having to think about it much.

It may be that other people have already had this brainwave, but I’m putting this up here just in case.

Drive does some pretty basic analytics on its own, but obviously you can do more by digging into the data yourself, or exporting it to a friendly geek who understands the Ways Of The Graph and How To Data.

If you want a bit of an idea about what’s possible, I’ve screen-capped my form here:

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Nerd alert: Because I’ve quite a few things to monitor, and I wanted a way to be able to compare days easily, I’ve worked it so that there are 10 items that measure on a scale of 1-10, and 1 is always best, 10 is always worst. This means that if I want to spot patterns, I can go to my spreadsheet, add up those 10 columns for every day, and then I have a score out of 100 for every day that I completed my form. There are much better ways of using this data, obviously, and I’ll be able to identify trends quite well from this, but the 1-100 scores should be able to very quickly help me see if my gut instincts are right or not, without having to dig through masses of data.

As I said, this may be old news, but it’s something I’d not thought of before. I hope it’s useful to at least someone out there :)

Edit: Loads of people have been asking me if they can copy my form or use it as a basis for their own monitoring systems. I didn’t know how to do it, but I had a bit of a poke about, and found a way. Below is a link to a copy of my form, which includes instructions on how to copy it to your own google drive folder. I’m not going to be maintaining it on a regular basis, so try to be careful that you just copy it for yourself, and don’t put any private information on it.

https://docs.google.com/forms/d/1OX81Zyzd3XolWxiDTeLJQXPIXppK0QevauR73jZzZlY/edit?usp=sharing

Best of luck, and if you have any issues, give me a shout on twitter, and I’ll see what I can do to help!

Maybe it’s more important than you think

So, in what I very much doubt will be a surprise to any reader, I’m a bit queer. My primary relationship is with three people.

Recently, my psychotherapist, whom I presume to be straight and monogamous, told me that they thought that my sexuality appears to be a very fundamental part of my personality and conception of self. And yes, I suppose it is, but I very much doubt that this is as unusual as they implied.

The straight monogamous assumption exists for a reason, I know that. The majority of people are straight and monogamous. Fine. Go for it. Have your straight monogamous fun. My parents are straight and monogamous, and it’s from their example that I learned so many of the relationship skills that I now use daily with my partners to build and maintain our lifelong commitment.

If you’re straight and monogamous, then trying to NOT be straight and monogamous probably isn’t going to work that well for you.

I’m not either of those things though, and thus neither of them worked particularly well for me. As it happens, I have a whole worldwide community of people I can look at, most of whom are in straight monogamous relationships, that show me that even though the straight monogamous model doesn’t work for me, it evidently does work for other people. So, not my relationship, not my problem. I can just sit on the sidelines and watch your wonderful love, and be happy seeing how happy y’all are with your straight monogamous partners.

I just wish you’d extend the same courtesy my way.

Because straight monogamous people get to talk about and celebrate their relationships all the time. There’s the initial teenaged explorations, often euphemistically referred to as ‘spreading wild oats’ or ‘growing up to be a lovely young lady’. There’s the high of a new relationship, telling friends, family and colleagues about this fantastic new person you’ve met. Sharing photos and stories. Receiving congratulations and being wished well for the future. The first meeting with each other’s parents, and the various embarrassing comments from people who are glad you ‘finally got laid’, or are thinking of ‘settling down’. Moving in together. Making them your emergency contact at work or in your medical records. Getting married. Having children. The process of growing together so that it no longer seems like you have very many friends who belong to either one of you alone, but all are shared.

For straight monogamous people, these life events are almost always shared and universally celebrated.

How about me?

Last week I got a haircut, and the hairdresser asked me if I was up to anything interesting that weekend. I answered, honestly, that I had a date the next day, where my new lover was coming over for dinner to meet my husband and one of my boyfriends. The woman who was cutting my hair checked that I had actually said what she thought I’d said, and then did a kind of ‘some people juggle geese’ shrug. The man at the front desk though, who had prior to this come over to chat politics quite a bit, blatantly checked out the third finger of my left hand, made a face like I was the dogshit on the sole of his shoe, and then conspicuously ignored me until I left.

This is not unusual. I am used to these reactions. I didn’t make a fuss because I just wanted to get my damn hair cut, and at least the person who actually had their hands on my head didn’t appear to think I was the Antichrist. At any given time, I can probably tell you an anecdote like that about something that has happened in the last month.

It takes it’s toll. And it can make you a bit defensive.

So yeah, my identity and sense of self do feature quite prominently the fact that I am not straight and that I am not monogamous. I don’t, for example, spend an awful lot of time thinking about the fact that I’m white, because I’m white in a predominantly white country in a predominantly white city where most of my friends are white. My whiteness is not routinely challenged. It’s not something I often have to think about. It just is.

(In fact, my colour-blindness is something that I was made aware of (although I now can’t recall how) about a year ago, and I’ve since made a conscious effort to follow more non-white people on twitter to help mitigate my lack of IRL contact with people outside my own ethnic group. Also hopefully learn some shit, and be less of an asshole white feminist. Can you believe that once upon a time I didn’t even know that it was black women who invented intersectionality? I have been proper schooled over the last year on this one.)

We tend not to notice the things about us that are least challenged. I know I’m white, but it’s never been made into any kind of a deal to me, so it’s never been made to be important. I’m into maths. That’s just a thing about me. It’s not the first thing I’d think of if I had to describe myself to a stranger, but I’d definitely miss it if it were gone.

And I get the feeling that if you take anyone and attack the most important relationships in their lives, submitting them to the routine scrutiny, disbelief and dismissal that I experience around mine, then they might suddenly discover that their relationships and sexuality are actually a whole lot more important and fundamental to their personality and sense of self than they previously realised.

Menstruation

I am currently menstruating. And I need to rant. Because menstruation fucking sucks. Let me tell you the ways.

For me, menstruation means pain, prescription painkillers, hot and cold flushes, frequent emptying of my mooncup so it doesn’t overflow onto my clothes, my loosest and least supportive (and therefore frumpiest) bra, massive fatigue and feeling like the wrong side of bed doesn’t even come close to describing the fucking problem I have with other human beings right now.

Sometimes, when people shit, they leave marks in the bowl of the toilet after they flush. Sometimes, when I empty my mooncup, I leave traces of blood in the toilet after I flush. My blood is not somehow magically more disgusting than your poop, and I will not rush to clean it for fear that confirmation of my possession of a bleeding uterus is somehow something shameful.

Yes, my mooncup is 1,000 times better than tampons and pads, but periods are still gloopy. I still get clots the size of my thumb and almost as solid. That shit hurts, and sometimes it doesn’t flush properly the first time.

Strangely, given that I’m currently hobbling back to the sofa, I’m not hugely fucking bothered about sticking around and checking if I need a second flush.

Yes, I am in pain. I am in a lot of pain. This is tiring and restricts my activities.

Yes, I am on painkillers. Plural. They are prescription because over the counter medication stopped helping years ago.

And if you fucking TRY to tell me that I am ‘medicalising a natural part of female experience’ I will cane your fucking arse for 5 days straight until you feel the level of pain I am in right now.

My painkillers come with side effects. They are not nice. And why the fuck does the medical establishment seem to have decided that with some ‘kind of okay I guess’ painkillers and a frankly insultingly invasive and not particularly wonderful array of hormonal treatments that often come with horrible side effects, that somehow it has solved the problems associated with menstruation? C’mon. You have all kinds of fancy shit for diabetes and heart disease (suffered by people who are likely to be on the funding boards of pharmaceutical companies) now how about pointing some of that funding our way?

(Some people may see parallels with sickle cell anaemia, also unlikely to be suffered by people on funding boards.)

And yes. My boobs are swollen. And this means I am wearing my least supportive bra. And I don’t give a shit how shallow it makes me, but when I look good, I feel better. Right now I don’t fit my clothes right, because compared to normal, my tits are about a mile in front of my shoulders and bouncing around my knees. This is not a good look.

Thank fuck for perfume, because about the only thing that’s going right today is that I smell amazing.

I’m doing NaNoWriMo, except not really

I don’t really do fiction, but I definitely need more discipline in my writing and could do with having a schedule to stick to and just churning stuff out without doing what I usually do and be a perfectionist and obsess over the quality and never end up finishing anything. 

So, I’m doing NaNoWriMo, except not really. Instead, I’ve made myself a list of feminist, political and intersectional topics, one for each day of November. I’ll be writing at least 500 words on each topic and sticking the result up here. It might be that I come up with some good stuff, but it’s far more likely to be nebulous thoughts and half-formed pet theories.

Should be fun. :)

Five years after Lehman Bros, how do we change the world?

Yesterday marked five years since the collapse of Lehman Brothers in New York, and the point beyond which global financial calamity could no longer be ignored.

Five years ago today, I lost my job. Turns out having your probation review for a job in the property market less than 24 hours after the global financial system melted down due to property lending was kinda a bad place to be. I’d known the market was shaky when I’d taken the job six months earlier, but like many in the precariat, any job offer was an offer I couldn’t refuse.

Since then, many have lost their jobs. Many more have been manipulated onto more precarious contracts and had their legal employment protections dismantled around them. Countless numbers have been stuck in jobs they want to leave yet daren’t  for fear of losing what little protection they have left. Few have received pay rises.

Around us, our governments sell off their assets, desperately hoping that where austerity has failed to re-boot the global economy or shift it’s path to one more beneficial for all, that extreme austerity will somehow magically work better.

Why are so few of us fighting for something better?

Our definition of working class is no longer fit for purpose, and the political mechanisms born from it no longer serve those who built it. A new class structure has arisen, and only those at the top are represented politically. The way we talk about class has not been updated, and many people believe themselves to be politically represented when in fact they are not.

Over the last week or so, I have been watching a series of lectures on the political history of African American women in the late 19th and early 20th centuries. One of the things that has struck me is the way in which their political lives are organised. Locally, almost all of the political activity I know about is tied to either a workplace union or a political party. There are isolated single issue campaigns as well, but these are quite limited in their scope, and not a basis for broad social change and political action. The black women I’ve been learning about had very different organisations. Their churches, their Mutual Benefit Societies, their Neighborhood Unions, their reading groups from which they built the National Association of Colored Women.

Our modern model for political engagement on the left in the UK is brittle. So brittle. And so unsuitable for the paradigms to which we have moved.

The modern left can learn from the political lives of the women I’ve been learning about, and from so many others. We need to examine other ways of engaging in politics. Ways that utilise the range of communication possibilities we now possess. The traditional model of working class political organising in the UK is no longer effective. Our working patterns have changed, and our political paradigms need to catch up. We need to define our political selves by the things that we share. Our job titles and levels of income are more diverse, but something almost all of us share is precarity.

Precarity is a far more useful basis for solidarity in the 21st century than poverty or the perceived class of one’s job. I know people without degrees whose job is to operate a photocopier whose homes and incomes are far more stable than others with PhDs and positions as university lecturers.

In a country and a world in which population is rising, the use of part time, zero hours and apprentice contracts has exploded, and workfare schemes are used to pad employment figures. The fact that the number of people in employment is also rising means practically nothing, yet these rising numbers are used to shame vast numbers of people who have fallen off the bottom of today’s brutal employment ladder. A far better measure of work being done and useful economic activity is the number of contracted paid hours.

The zero hour contract has been receiving justified attention recently. An uncertain income is, in the current economy, worse than no income at all. All government benefits assume a constant wage, therefore a shifting wage that changes week to week can leave you worse off than someone subsisting entirely on benefits. And not only financially; the emotional and administrative strain of keeping a household on track with a constantly shifting income cannot be overestimated.

And all the while, the rising number of jobs is waved in our faces and used to make us feel guilty. As though we cannot see the unemployment numbers they’re so desperately trying to hide. As though the fact that there aren’t even any full time jobs to apply for is our own fault. As though if we tried harder, wished harder, looked for more hours per day, somehow there would be a full time job at the living wage or above for every person looking.

Then there’s debt. The public debate on debt has been focussed almost entirely on state debt, and the matter of debts held by members of the public is turning into the elephant in the room. Household and private debt is rising. The state is drawing back it’s support of individuals, meaning we have fewer places to turn should something go wrong. The state is drawing back it’s support of companies, meaning that they are understandably nervous to increase wages in an economically risky climate that our government has failed to stabilise.

All I’m saying is, if the government is sending men in black to smash the hard drives of businesses and individuals, can we the people smash the hard drives at Wonga HQ?

And, journalists. Politicians. Economists. The word, ‘recovery’. You keep using that word. I do not think it means what you think it means.

Maybe some or all of the people using this word actually think that a recovery is happening. Maybe they really do think that people’s lives haven’t been ruined.

But people are starving. Stilted. Struggling. Fighting to survive. Wondering if their lives will ever be more than a fight for the basics. Wondering why people are talking about ambition and aspiration as though that will fix things, because the world they live in is not a world we recognise.

Our political leaders and our political institutions have had five years since the problem became unavoidable, and yet they are still using language, statistics and propaganda to avoid coming up with a solution. They’ve had their chance. They blew it.

So how do we change the world?

When debate is worse than silence

As an intersectional feminist on the internet, one of the things I come across fairly often is the accusation that to refuse to debate something, or to withdraw from a debate for any reason, is an admission of failure. It is assumed that to refuse a debate, or to decide to end it before your opponent, means that you tacitly accept that your argument was flawed, and that your opponent ‘wins’, no matter the circumstances or reason for refusal / withdrawal.

This is stupid.

There are many reasons why one would not want to enter into a debate, but one of the main ones is when you can see no merit in it, because the other person’s opinion is so weird and wrong, that to even start a debate, or acknowledge that there is a debate that could be had, gives legitimacy to a position that deserves none.

Richard Dawkins, for his many faults, is unquestionably an expert on the subject of Darwinian evolution. He neatly explains in this short video clip the reason why he won’t debate with creationists. He compares it to a geographer agreeing to debate with a flat-Earther, or a reproductive scientist debating with an advocate of the stork theory of human reproduction.

These examples are patently ridiculous and exaggerated, and yet daily, intersectional feminists are lambasted by MRAs (Men’s Rights Activists, of the sort found on this bizzare sub-reddit), TERFs (Trans* Excluding Radical Feminists such as the despicable Cathy Brennan, whose hazing of trans* women I won’t link to, but is well known) and others for failing to debate a position and therefore ‘losing’. Yet to enter into debate on some subjects with these people is to say that there is a debate to be had, and to entertain the possibility that their views hold merit.

They don’t. And to give these views the oxygen of publicity and the legitimacy of a response allows the wider societal debate to shift due to a psychological effect called anchoring. Zoe Stavri explored this effect in this blog post, and I advise you to read the whole thing if you haven’t already, as this strategy is being used all over the place these days, and it’s crucial to be aware of how debate is being shaped by extremism.

MRAs assert that patriarchy is not real, and women are not really oppressed. TERFs assert that trans* women are not women. Creationists challenge the theory of evolution and the carbon dating of fossils and rocks. Flat Earthers assert that the world is, contrary to the evidence of space photography and centuries of science, flat.

All of these views are as ridiculous as each other, and all are unworthy of debate. And the next time someone refuses to engage in debate with you, maybe you should wonder why.

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