I'm seeing a lot of articles popping up in my feeds this week about period poverty. Most of them appear to be written by people who have never actually experienced it, trying to reduce the issue to whether a single tampon works out at 5p or 50p, and it is grinding my gears.
Periods are not consistent. There is no incredible One Box of sanitary products that covers one woman's needs for one period. You have heavy days, light days. You have times when it's best to use a super plus tampon and an overnight pad both at once, and you have times when either of those products would just be amazingly uncomfortable. It also wouldn't be economical - as a rule, night pads are more expensive than "regular" pads which are in turn more expensive than panty liners, but if you tried to get through a heavy day with just regular pads you'd need to use a dozen of them. To deal with one period, you need more than one product.
Whatever products you need though, even if you only need one of each, you have to buy multipacks. This is the thing really upsetting me about the pennies-per-pad calculations. The only way you can buy one pad, or one tampon, is from vending machines in ladies' loos which, last time I had cause to use one, is £1 a time (and might be more now). In the real world, we buy packs of 14. Or 12. Or 10. Or 50. A challenge for those snide writers of articles sagely declaring that the mega value bundle from UltraPoundwiseUniverse gets it down to a penny per pad: I'll punch you in the stomach a few times, put clothespins on your nipples, and fill your pants with loo roll, raw egg whites, and food dye, and then you can take your calculator on the bus and go shopping around for the best deal, yes? And don't forget, you can't do it while you're at work, and if you're unemployed you've got to fit it around doing your compulsory job applications and you have to take your kids with you.
Don't tell me we should bulk buy ahead of time, either. If you're experiencing period poverty you're likely experiencing other forms of poverty too. Your room in the b&b "temporary housing" does not have a pantry, under-stairs cupboard, loft, basement, shed, or any other storage space. Odds are you can't store anything in the shared bathroom either, even IF it's clean enough to consider doing so (mooncup evangelists, I'm looking at you as well now).
Of course, having bought your packet of 12 pads, you probably will use the remaining 11, because on average, for most people who have periods, it's something that happens almost every month for 30-35 years, for about 6 days in every 28.
But this is where tight budgeting comes in. Let's say it's day 5 of your period, it's light flow and almost over. You need three more pads. You've got two. There is £2.47 in your purse for the next two days. A packet (remember, you can only buy a whole packet!) of regular pads costs about £1.40 at the local shop (it's cheaper at the big supermarket but not if you add the bus fare). Do you (a) spend a sizeable chunk of your remaining cash on a pack of pads when you only need one, or (b) use the two you've got and then do your best with loo roll?
Period poverty isn't just about it costing £120 over the course of a year. When you're in actual poverty a year is an unthinkably long time and even a month is too far off to be planning. All of your Cope is taken up with making it through to the next payday and things that are "only" a couple of pounds might still be a couple of pounds more than you've got.
Showing posts with label rant. Show all posts
Showing posts with label rant. Show all posts
Thursday, May 31, 2018
Thursday, March 02, 2017
1 in 200
I am still breastfeeding Jamie at 18 months old. First thing in the morning, last thing at night, during the day if he requests it.
This shocks some people, because in the UK it's a very unusual thing to do. Which is odd, because it's exactly the recommended path according to the NHS and the World Health Organisation. Exclusive breastfeeding to 6 months, then breastfeeding alongside other foods and drinks, ideally until at least 2 years, longer if mother and child both want to.
And yet.
The trouble with being 1 in 200 this way is that there's 199 mums who believe you're criticising their choices. So I get all English about it and make sure to validate their choices. I nod and smile and agree that whatever difficulties they faced were insurmountable, to the point where it was barely a choice at all. I imply that in their situation I would have likely made the same choice. I make cracks about how I'm only breastfeeding because I'm too lazy to sterilise bottles.
But a bit of me rages inside. I, too, had some difficulty getting started (I recommend the NCT Breastfeeding Helpline 0300 330 0771, and remember to use a phone that you can put on loudspeaker). I, too, would like to have a day off. I'd like my partner to be able to do the bedtime routine once in a while. I've made medication choices based on breastfeeding compatibility to the detriment of my own health. I've ridden out two bouts of mastitis during which, obviously, I had to look after Jamie even while hallucinating with fever. I've been bitten, basically once per tooth. Breastfeeding might be natural but it's not the soft option. I've worked hard at it and committed to sustaining it because every resource not sponsored by a formula company says it's the best and right and correct and most beneficial thing to do for my child.
It really upsets me that I then end up having to defend that choice, that effort. I've had people suggest that I do it because I want to delay Jamie's development. Or because I'm too possessive of him and don't want to let anyone else care for him. Or because it makes me feel important. Or because I don't know any other way to calm him down. Or because I'm an exhibitionist. Then we have the people who aren't so explicit about it, the double-takes, the "you're still breastfeeding him?!?" remarks, the queries about when I'm going to stop. It all grinds me down.
I'm not expecting a cookie - the cookie is knowing I'm doing my best for Jamie, and Steve gives me a lot of encouragement too - but less criticism and incredulity would be so nice.
This shocks some people, because in the UK it's a very unusual thing to do. Which is odd, because it's exactly the recommended path according to the NHS and the World Health Organisation. Exclusive breastfeeding to 6 months, then breastfeeding alongside other foods and drinks, ideally until at least 2 years, longer if mother and child both want to.
And yet.
The trouble with being 1 in 200 this way is that there's 199 mums who believe you're criticising their choices. So I get all English about it and make sure to validate their choices. I nod and smile and agree that whatever difficulties they faced were insurmountable, to the point where it was barely a choice at all. I imply that in their situation I would have likely made the same choice. I make cracks about how I'm only breastfeeding because I'm too lazy to sterilise bottles.
But a bit of me rages inside. I, too, had some difficulty getting started (I recommend the NCT Breastfeeding Helpline 0300 330 0771, and remember to use a phone that you can put on loudspeaker). I, too, would like to have a day off. I'd like my partner to be able to do the bedtime routine once in a while. I've made medication choices based on breastfeeding compatibility to the detriment of my own health. I've ridden out two bouts of mastitis during which, obviously, I had to look after Jamie even while hallucinating with fever. I've been bitten, basically once per tooth. Breastfeeding might be natural but it's not the soft option. I've worked hard at it and committed to sustaining it because every resource not sponsored by a formula company says it's the best and right and correct and most beneficial thing to do for my child.
It really upsets me that I then end up having to defend that choice, that effort. I've had people suggest that I do it because I want to delay Jamie's development. Or because I'm too possessive of him and don't want to let anyone else care for him. Or because it makes me feel important. Or because I don't know any other way to calm him down. Or because I'm an exhibitionist. Then we have the people who aren't so explicit about it, the double-takes, the "you're still breastfeeding him?!?" remarks, the queries about when I'm going to stop. It all grinds me down.
I'm not expecting a cookie - the cookie is knowing I'm doing my best for Jamie, and Steve gives me a lot of encouragement too - but less criticism and incredulity would be so nice.
Saturday, November 19, 2016
Breastfeeding Myths
All other things being equal, breastfeeding is best for babies. Current WHO advice is to breastfeed exclusively for the first six months, and then alongside other foods for as long as you and your baby both want to, which they suggest could be two years or beyond. There are many good reasons to choose breastfeeding.
There are also a lot of bad and misleading "reasons" that get spewed forth with the good ones.
1. It is cheaper because it doesn't require special equipment.
Unless, of course, you want to be at all comfortable and retain any dignity while doing it. In that case, you will need a full set of nursing bras, which means sleep ones and daytime ones, and because your body and breasts will keep changing size and shape, you need to get re-fitted every few months. It will cost hundreds of pounds and comes as quite a shock to those of us who, pre-pregnancy, were small enough that bras were more about decoration than support.
Then you need breast pads, to avoid getting massive wet smelly circles of milk soaking through those expensive bras and making stains on clothes and upholstery, and also to try and stave off the risk of infection. A box of 60 decent ones (like other feminine hygiene products, value-brand ones are false economy) is about £6 and lasts 15 days (you use two pads at a time, obviously, and if you have a day bra and a sleep bra that's two sets per day) so for the two years the WHO recommend you breastfeed, that's about £300.
You'll probably want some nursing tops as well, if you want to feed on demand and intend to ever leave the house. In summer it's not too bad, you wear a vest that you can pull down underneath a lightweight shirt or top that you can either open or pull up. The other 40 weeks of the UK weather year, I for one want my shoulders and back and tummy to stay covered. Not just for modesty either, although that's part of it. But hoicking up a winter jumper on one side means trying to feed the baby around a huge amount of smothering, view-obscuring cloth while half of your back muscles scream in lopsided agony from the chill. It's not a nurturing experience! So you need tops. At least eight, to start with, because you need to account for laundry turnaround time and additional changes due to vomit and other fluids. At £20+ each that's another couple of hundred pounds. But eight tops won't see you through two years. I'm embarking on my second winter and the tops I wore last year are... well... they look like they've had a year of hard wear and are nothing like as warm or as presentable as they were at first. Also, after a few months, while a body might not be quite what it was, it's not post-partum shaped so anything that was marketed for pregnancy *and* nursing looks ridiculous, with armfuls of cloth over a bump that no longer exists. People ask me when I plan to stop nursing Jamie and I'm only half joking when I say not yet, I've spent £150 on nice warm nursing hoodies so it'd be a terrible waste of money if I stop now!
You could get a nursing cover, although I wouldn't recommend it. And you're expected to take breastfeeding vitamins as well, at about £15/month that's another £360 over the two years.
Basically I want to bang my head off things when people assert that breastfeeding is "free".
2. It saves a lot of messing about with bottles and steriliser and so on.
True, but only to a point. If you have any intention of outsourcing even one feed over those 730 days, whether that's for your return to work, or to allow you to have a drink, or when you are sick, or to give other caregivers a bonding opportunity, you need a steriliser and at least one bottle set. These cost the same and take up space whether you use them three times a day, or three times a year.
If you want that bottle to be full of breast milk rather than formula then you also need a pump, hand or electric, and storage containers. We got a "breastfeeding support set" which was about £150. You need to find time to pump while also making sure the baby is fed - no good emptying yourself out in the half hour before the baby wakes! The baby probably won't sleep through the noise of the pump if you're in the same room, and once they're bigger, then trying to find a solid fifteen minutes do anything without their interruption is impossible. Finding time to pump if you don't already have childcare is a fine art. And then you've got to scrub and sterilise all the pump components as well... Once you enter the world of pumping, the "messing about with bottles" argument flies out of the window. As soon as there is a bottle, formula is infinitely quicker, easier, and involves less washing up.
3. It's more convenient.
Again, true up to a point. Yes, in the middle of the night it's a marvellous thing to not be trying to mix or warm up a bottle, instead just sleepily undoing your nightie and latching the baby on in seconds. But the real winners here are the dads. Not only does the baby stop crying sooner, they are off the hook for night feeds, because even if there's expressed milk ready to go, no breastfeeding mama is going to be able to lie still while her baby does the Hungry Cry while waiting for daddy to warm a bottle. Quite apart from the noise level, the sound of the hungry baby causes a physical response of milk production. Bottle-feeding parents can share night duties, when the family is sick then bottle-feeding parents can alternate shifts to each get a solid eight hours of rest. Breastfeeding mamas have no such luxury. Exclusive breastfeeding from source is wonderfully convenient for daddies.
4. Breastfed babies don't need burping and don't have reflux.
Bollocks. Go on, ask me how I know.
5. Almost any mother can breastfeed!
Also bollocks and a really nasty line to pull on women who want to breastfeed but cannot. Note please that I'm avoiding the even more awful caveat "for genuine/valid reasons" because, as with disability, who the hell is a stranger to decide what counts as valid? There's so many factors at play.
6. There's lots of support available!
True, but it would be more useful if it was at all consistent. New mothers get conflicting advice even before leaving the hospital, as different midwives have their different ways of doing things. Websites, breastfeeding counsellors, friends and relatives, everyone has an opinion and at least half of them will believe that whatever you're doing is wrong. The price of "support" is a lot of pressure. At least formula has unequivocal correct instructions on the tin.
Don't misunderstand, I feel very fortunate that I've been able to feed Jamie. I believe, even if I can't prove, that it's been instrumental in turning him into the happy, healthy, secure little boy he is. I feel like I've achieved something significant and that I've done right by him. But I feel like the pro-breastfeeding gangs devalue their message by diluting the genuine advantages with silly half-truths that don't stand up to scrutiny, and this fanatical belief that breastfeeding is the only important duty of a mother.
There are also a lot of bad and misleading "reasons" that get spewed forth with the good ones.
1. It is cheaper because it doesn't require special equipment.
Unless, of course, you want to be at all comfortable and retain any dignity while doing it. In that case, you will need a full set of nursing bras, which means sleep ones and daytime ones, and because your body and breasts will keep changing size and shape, you need to get re-fitted every few months. It will cost hundreds of pounds and comes as quite a shock to those of us who, pre-pregnancy, were small enough that bras were more about decoration than support.
Then you need breast pads, to avoid getting massive wet smelly circles of milk soaking through those expensive bras and making stains on clothes and upholstery, and also to try and stave off the risk of infection. A box of 60 decent ones (like other feminine hygiene products, value-brand ones are false economy) is about £6 and lasts 15 days (you use two pads at a time, obviously, and if you have a day bra and a sleep bra that's two sets per day) so for the two years the WHO recommend you breastfeed, that's about £300.
You'll probably want some nursing tops as well, if you want to feed on demand and intend to ever leave the house. In summer it's not too bad, you wear a vest that you can pull down underneath a lightweight shirt or top that you can either open or pull up. The other 40 weeks of the UK weather year, I for one want my shoulders and back and tummy to stay covered. Not just for modesty either, although that's part of it. But hoicking up a winter jumper on one side means trying to feed the baby around a huge amount of smothering, view-obscuring cloth while half of your back muscles scream in lopsided agony from the chill. It's not a nurturing experience! So you need tops. At least eight, to start with, because you need to account for laundry turnaround time and additional changes due to vomit and other fluids. At £20+ each that's another couple of hundred pounds. But eight tops won't see you through two years. I'm embarking on my second winter and the tops I wore last year are... well... they look like they've had a year of hard wear and are nothing like as warm or as presentable as they were at first. Also, after a few months, while a body might not be quite what it was, it's not post-partum shaped so anything that was marketed for pregnancy *and* nursing looks ridiculous, with armfuls of cloth over a bump that no longer exists. People ask me when I plan to stop nursing Jamie and I'm only half joking when I say not yet, I've spent £150 on nice warm nursing hoodies so it'd be a terrible waste of money if I stop now!
You could get a nursing cover, although I wouldn't recommend it. And you're expected to take breastfeeding vitamins as well, at about £15/month that's another £360 over the two years.
Basically I want to bang my head off things when people assert that breastfeeding is "free".
2. It saves a lot of messing about with bottles and steriliser and so on.
True, but only to a point. If you have any intention of outsourcing even one feed over those 730 days, whether that's for your return to work, or to allow you to have a drink, or when you are sick, or to give other caregivers a bonding opportunity, you need a steriliser and at least one bottle set. These cost the same and take up space whether you use them three times a day, or three times a year.
If you want that bottle to be full of breast milk rather than formula then you also need a pump, hand or electric, and storage containers. We got a "breastfeeding support set" which was about £150. You need to find time to pump while also making sure the baby is fed - no good emptying yourself out in the half hour before the baby wakes! The baby probably won't sleep through the noise of the pump if you're in the same room, and once they're bigger, then trying to find a solid fifteen minutes do anything without their interruption is impossible. Finding time to pump if you don't already have childcare is a fine art. And then you've got to scrub and sterilise all the pump components as well... Once you enter the world of pumping, the "messing about with bottles" argument flies out of the window. As soon as there is a bottle, formula is infinitely quicker, easier, and involves less washing up.
3. It's more convenient.
Again, true up to a point. Yes, in the middle of the night it's a marvellous thing to not be trying to mix or warm up a bottle, instead just sleepily undoing your nightie and latching the baby on in seconds. But the real winners here are the dads. Not only does the baby stop crying sooner, they are off the hook for night feeds, because even if there's expressed milk ready to go, no breastfeeding mama is going to be able to lie still while her baby does the Hungry Cry while waiting for daddy to warm a bottle. Quite apart from the noise level, the sound of the hungry baby causes a physical response of milk production. Bottle-feeding parents can share night duties, when the family is sick then bottle-feeding parents can alternate shifts to each get a solid eight hours of rest. Breastfeeding mamas have no such luxury. Exclusive breastfeeding from source is wonderfully convenient for daddies.
4. Breastfed babies don't need burping and don't have reflux.
Bollocks. Go on, ask me how I know.
5. Almost any mother can breastfeed!
Also bollocks and a really nasty line to pull on women who want to breastfeed but cannot. Note please that I'm avoiding the even more awful caveat "for genuine/valid reasons" because, as with disability, who the hell is a stranger to decide what counts as valid? There's so many factors at play.
6. There's lots of support available!
True, but it would be more useful if it was at all consistent. New mothers get conflicting advice even before leaving the hospital, as different midwives have their different ways of doing things. Websites, breastfeeding counsellors, friends and relatives, everyone has an opinion and at least half of them will believe that whatever you're doing is wrong. The price of "support" is a lot of pressure. At least formula has unequivocal correct instructions on the tin.
Don't misunderstand, I feel very fortunate that I've been able to feed Jamie. I believe, even if I can't prove, that it's been instrumental in turning him into the happy, healthy, secure little boy he is. I feel like I've achieved something significant and that I've done right by him. But I feel like the pro-breastfeeding gangs devalue their message by diluting the genuine advantages with silly half-truths that don't stand up to scrutiny, and this fanatical belief that breastfeeding is the only important duty of a mother.
Saturday, September 26, 2015
Phew!
Excellent news this week - Social Services have managed to put a care package in place for me as I transition to parenthood.
The remaining three weeks of pregnancy (plus the two weeks of Steve's paternity leave) there's not really any notable change from my existing care package. My understanding is that they are taking the view that if I've survived pregnancy for 36 weeks on my existing arrangement I will survive the rest.
I disagree with this. I have been horribly isolated and largely housebound during my pregnancy, because I've had to abandon my former activities as I've needed to use up so many of my hours on support for/transport to medical and social services appointments and trying to get the baby essentials in place. We've been extremely lucky in that I haven't had the sort of complications that lead to weekly appointments or all-day clinics. I've also been unable to participate in a number of the recommended activities that I had been hoping to engage with during pregnancy, such as swimming/aquanatal, antenatal exercise/social groups, shopping events that offer discounts on baby equipment, etc.
Plus of course, in this final month, my body is drastically changed and the baby is getting noticeably bigger week by week. We took 30 weeks to get to 3lbs, but only another 4 weeks to get from there to 4.5lbs, and by 39 weeks we should be between 6 and 8lbs. I'm huge! I can't lie on my front or my back any more! I don't dare lie down on the sofa while I'm alone in the house because I can't get back up! I need to wee all the time and I haven't got my stairlift yet! There's not enough room in my belly to eat a proper main meal, I'm supposed to be eating several smaller ones throughout the day but I don't have support to do that! If pregnancy is a marathon, the last bit of it is seriously uphill compared to the previous months!
The failure/refusal of social services to properly support my needs during pregnancy has caused a loss of freedom and has had a documented impact on my mental health (as well as, to a less dramatic extent, my physical health), and that baby and I have "survived" has had more to do with luck and favours than any idea that my support package has been adequate.
However, I have a choice. I can spend the next three weeks struggling to cope AND struggling to fight with social services for resources which, even if I technically win, won't possibly be in place before the birth. Alternatively, I can spend the next three weeks struggling to cope AND trying to focus on thinking the happiest thoughts I can, resting as much as possible, and trying to be ready for what happens once the baby arrives.
And this is the really good news. Once the baby is outside me and Steve has gone back to work, social services have granted me 40 hours per week of support.
It doesn't mean I'll have someone here all the time - Steve works more than 40 hours each week and there's commuting time as well. But if I structure it as two shifts totalling 8 hours a day, 5 days a week, and if I'm careful about making sure that at the end of each PA shift baby and I are safely set up with everything we'll need in the next hour or so to hand, then it will work.
I can feel safe.
Of course it isn't indefinite. The plan is to review it every two weeks (I admit to wondering if this will be two calendar weeks, or a social services "two weeks") and to reduce the package as I recover from the surgery, baby gets the hang of feeding, the medical appointments peter out, a routine begins to develop.
But that's okay. I can go into surgery to have the baby knowing that, at least while the stitches are in, someone will be around to help me fulfil my role as a parent. The first month, which I anticipate as being the most difficult, I will be supported.
I had been so scared that they were going to wait until an actual crisis occurred, that either the baby or I would have to be hospitalised to "prove" that we needed help before any help would be forthcoming. Or, perhaps worse, that the baby and toddler years would be like the pregnancy - baby and I would be trapped at home struggling to do anything more than survive, but that with luck and favours and Steve turning himself inside out we'd scrape along *just* well enough that no red flags would be raised, leading to a situation that never improved and a child who started school with all sorts of disadvantages because I had never been supported to provide them with proper pre-school education, socialisation, nutrition, exercise...
Instead, I have a chance. I *will* be adequately supported for that first month and probably for the second month as well. If I can use that time to engage with the Health Visitors, if I can develop attendance at the breastfeeding groups and other baby activities, if I can demonstrate that I'm eating well, if I can line classes and activities up for 2016, then I will be in a strong position to argue that I need to continue with those things to fulfil my parenting role.
The remaining three weeks of pregnancy (plus the two weeks of Steve's paternity leave) there's not really any notable change from my existing care package. My understanding is that they are taking the view that if I've survived pregnancy for 36 weeks on my existing arrangement I will survive the rest.
I disagree with this. I have been horribly isolated and largely housebound during my pregnancy, because I've had to abandon my former activities as I've needed to use up so many of my hours on support for/transport to medical and social services appointments and trying to get the baby essentials in place. We've been extremely lucky in that I haven't had the sort of complications that lead to weekly appointments or all-day clinics. I've also been unable to participate in a number of the recommended activities that I had been hoping to engage with during pregnancy, such as swimming/aquanatal, antenatal exercise/social groups, shopping events that offer discounts on baby equipment, etc.
Plus of course, in this final month, my body is drastically changed and the baby is getting noticeably bigger week by week. We took 30 weeks to get to 3lbs, but only another 4 weeks to get from there to 4.5lbs, and by 39 weeks we should be between 6 and 8lbs. I'm huge! I can't lie on my front or my back any more! I don't dare lie down on the sofa while I'm alone in the house because I can't get back up! I need to wee all the time and I haven't got my stairlift yet! There's not enough room in my belly to eat a proper main meal, I'm supposed to be eating several smaller ones throughout the day but I don't have support to do that! If pregnancy is a marathon, the last bit of it is seriously uphill compared to the previous months!
The failure/refusal of social services to properly support my needs during pregnancy has caused a loss of freedom and has had a documented impact on my mental health (as well as, to a less dramatic extent, my physical health), and that baby and I have "survived" has had more to do with luck and favours than any idea that my support package has been adequate.
However, I have a choice. I can spend the next three weeks struggling to cope AND struggling to fight with social services for resources which, even if I technically win, won't possibly be in place before the birth. Alternatively, I can spend the next three weeks struggling to cope AND trying to focus on thinking the happiest thoughts I can, resting as much as possible, and trying to be ready for what happens once the baby arrives.
And this is the really good news. Once the baby is outside me and Steve has gone back to work, social services have granted me 40 hours per week of support.
It doesn't mean I'll have someone here all the time - Steve works more than 40 hours each week and there's commuting time as well. But if I structure it as two shifts totalling 8 hours a day, 5 days a week, and if I'm careful about making sure that at the end of each PA shift baby and I are safely set up with everything we'll need in the next hour or so to hand, then it will work.
I can feel safe.
Of course it isn't indefinite. The plan is to review it every two weeks (I admit to wondering if this will be two calendar weeks, or a social services "two weeks") and to reduce the package as I recover from the surgery, baby gets the hang of feeding, the medical appointments peter out, a routine begins to develop.
But that's okay. I can go into surgery to have the baby knowing that, at least while the stitches are in, someone will be around to help me fulfil my role as a parent. The first month, which I anticipate as being the most difficult, I will be supported.
I had been so scared that they were going to wait until an actual crisis occurred, that either the baby or I would have to be hospitalised to "prove" that we needed help before any help would be forthcoming. Or, perhaps worse, that the baby and toddler years would be like the pregnancy - baby and I would be trapped at home struggling to do anything more than survive, but that with luck and favours and Steve turning himself inside out we'd scrape along *just* well enough that no red flags would be raised, leading to a situation that never improved and a child who started school with all sorts of disadvantages because I had never been supported to provide them with proper pre-school education, socialisation, nutrition, exercise...
Instead, I have a chance. I *will* be adequately supported for that first month and probably for the second month as well. If I can use that time to engage with the Health Visitors, if I can develop attendance at the breastfeeding groups and other baby activities, if I can demonstrate that I'm eating well, if I can line classes and activities up for 2016, then I will be in a strong position to argue that I need to continue with those things to fulfil my parenting role.
Monday, September 21, 2015
An Update
In my last few posts, I talked about three major obstacles to the baby preparations.
One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.
Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.
I'm gradually getting used to it and I think it's going to meet my needs well.
There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.
At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.
Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...
On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.
Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.
We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.
We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.
There were two problems with that.
One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.
The other was that the date they were suggesting was the actual date for which my caesarean is booked.
After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.
I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.
One was the difficulties of getting assessed for a suitable wheelchair. After my last post, a number of people gave me details of companies and charities who had been useful to them. Sadly when I followed up these leads, some weren't able to help, and others were unhelpful by choice, showing me the chairs they wanted to sell rather than the chairs that would meet my needs, and calling it an assessment.
Thankfully, this turned out to be the easiest situation to resolve. The experiences with the "assessors" convinced me that I might as well ditch my fear that going into a mobility showroom would leave me prey to unscrupulous salespeople. I called a local showroom, explained my needs, and arranged an appointment. When I arrived, the salesman had several chairs lined up that did meet my specifications. After a bit more discussion and measuring, I was having a test ride, which included seeing if my favourite one would fit in the car. It did. The salesman then encouraged us to take our time, go home, have a think, and phone him on Monday if we wanted to buy it... and a brand-new one was delivered by him to our house at the end of that week.
I'm gradually getting used to it and I think it's going to meet my needs well.
There was Social Services, where "my" social worker had gone off sick less than three months into my pregnancy. The refusal of Warwickshire Social Services to transfer my case to a different social worker "because she'll be back soon" meant that I had no support at all until my pregnancy was past the half-way point, at which stage it was conceded that the Duty Social Worker team could help out with my case if they had time. I saw a Duty Social Worker at 26 weeks pregnant, but at the time of my last post, I wasn't confident that it had gone well.
At 32 weeks and with my assessment still waiting to be seen by the decision makers, my Health Visitor decided to see if she could intervene in any way. She was told that "my" original social worker was due back in the office any day and would definitely call her back as a matter of urgency. Except of course that this was every bit as much a lie as it had been every time I'd been fobbed off with it during the Spring.
Then at 33 weeks pregnant, for reasons it's probably best not to speculate on, I was officially reassigned to the proper caseload of the social worker who had been the Duty Social Worker who had seen me almost two months earlier. A few days later, I was given a date for my caesarean section which will be at about 39 weeks. I'm not sure if this deadline helped - at 35 weeks pregnant, with four weeks of pregnancy remaining, I think my assessment for additional support during pregnancy was very nearly ready to be submitted to the panel...
On the bright side, the Health Visitor and the no-longer-duty Social Worker are liaising directly now, and I think the midwife might be as well.
Which means I'm free to worry about the stairlift. At the time of my last post, after the delays caused by the absent social worker situation, we had sped through the assessment process thanks to a helpful and super-efficient OT and were awaiting a quote, which arrived, as it was supposed to, just before 28 weeks of pregnancy.
We signed, wrote a cheque for a deposit of over £2,000, and got it back to them next-day. According to the contract, this meant installation would happen within 6-8 weeks - so at the very latest, before 36 weeks of pregnancy (or "well before the end of September" for those of you who prefer a traditional calendar). It was cutting it fine, but it would be okay.
We were quite surprised to then be offered an installation date in the middle of October, or 39 weeks of pregnancy.
There were two problems with that.
One was that it was 3 weeks over the maximum 8 weeks promised in the contract, which really is not good enough when you are forking over five thousand pounds for essential equipment. I signed that contract on the understanding that my stairlift would be installed within the timeframe specified in the contract.
The other was that the date they were suggesting was the actual date for which my caesarean is booked.
After a lot of phone calls (which is always me phoning them, because their inability to stick to their own suggested timescales extends to calling back when they say they will), they have managed to rearrange for installation to happen in the first week of October. This is still breaching the contract - but I don't have the choice to make a big deal about that, because I need a stairlift in place before the baby gets here, and it is too late to get one from a different provider.
I am in my final month of pregnancy. I am supposed to be thinking nice, nurturing thoughts, and doing gentle exercises, and nesting. If I was at work and experiencing this kind of stress, I would be advised to start my maternity leave now. But there's no maternity leave from this situation.
Tuesday, June 12, 2012
Problem?
The big line being pushed by our beloved government this week is about "problem families" and the need to "crack down" on them. The right-wing press have seized on this, breaking out charming descriptors like "Britain's worst scumbags". There are apparently 120,000 of them, costing Our Brave Nation £9bn every year. Even the supposedly-neutral BBC agrees, although by now their oft-used phrase "according to ministers" basically translates as "you might want to take this with a pinch of salt."
So, what makes a "problem family"? How do we define the country's "worst scumbags"?
Well, that's where it all gets a bit runny. No one's quite sure where the figures of 120,000 and £9bn have come from - those ministers so keen to make these assertions aren't so keen to have their assertions examined and have not been forthcoming with their sources. Fullfact.org have given it their best shot and come up with the 117,000 families in England classed as "Families with Multiple Problems" as the nearest likely contender. The definition of that is clearly set out. An FMP is a family that matches at least five of the following seven criteria:
This quite surprised me because by that yardstick, I spent most of my teenage years in an FMP. My mother was not in work (1) due to her longstanding limiting illness, disability or infirmity (2) which meant that once my father was gone, we were a single-parent family reliant on state benefits which were a low income (3). We had difficulty affording proper food (a regular meal was "pasta and gravy", no meat or vegetables, which I didn't even realise was unusual until I was 19) and most of my clothes were second-hand (4). And our house was in a pretty awful state of repair, cracked windows and dangerous electrical wiring being two of the simpler issues (5). Ding, Family with Multiple Problems.
Eric Pickles, the Communities Secretary, has been ranting about these families not in terms of their circumstances, but in terms of their behaviour - crime and social disorder, truancy, alcohol abuse, and "ruining the lives of their neighbours".
Hmm. My sister and I were never in trouble with the police, we always had a parental note on the rare occasions when we missed school, the only alcohol in the house during our teenage years was the occasional bottle of wine given to our mother as a gift, and we got on well with the neighbours on both sides. We performed well in school, engaged in extra-curricular activities, got home by our curfew and were basically normal, boring, well-behaved kids.
Which on one level is admittedly irrelevant. My personal circumstances are anecdote, not data. To examine the data, go back to the Fullfact article, which is excellent in that regard and links back to all manner of primary data sources, and indicates that the number of FMPs which also have children exhibiting problem behaviour is closer to 46,000.
What I can say - anecdotally - is that while my teenage self would have accepted the descriptor "Family with Multiple Problems" as an unpalatable but undeniable truth, she'd be rather upset by the idea that to live with those problems was interchangeable with behaving in an antisocial or criminal manner. When getting home at 5pm after doing her homework on the school computers with a bunch of other kids in similar circumstances, she'd be quite put out by Mr Pickles' view that children like her needed to get their truancy under control. When babysitting, for free, the child of someone who volunteered one evening a week at a social group for people with learning difficulties, she'd be quite angry to hear Prime Minister David Cameron assert that people like her and the person she was babysitting for were creating "a huge amount of social problems, for themselves but also for the wider community".
Please, please, please, can we stop conflating "poverty" and "immorality", "lives with problems" and "is a problem", and "not in paid employment" and "does nothing of any use at all."
So, what makes a "problem family"? How do we define the country's "worst scumbags"?
Well, that's where it all gets a bit runny. No one's quite sure where the figures of 120,000 and £9bn have come from - those ministers so keen to make these assertions aren't so keen to have their assertions examined and have not been forthcoming with their sources. Fullfact.org have given it their best shot and come up with the 117,000 families in England classed as "Families with Multiple Problems" as the nearest likely contender. The definition of that is clearly set out. An FMP is a family that matches at least five of the following seven criteria:
• No parent in the family is in work
• Family lives in poor quality or overcrowded housing
• No parent has any qualifications
• Mother has mental health problems
• At least one parent has a longstanding limiting illness, disability or infirmity
• Family has low income (below 60% of the median)
• Family cannot afford a number of food and clothing items.
This quite surprised me because by that yardstick, I spent most of my teenage years in an FMP. My mother was not in work (1) due to her longstanding limiting illness, disability or infirmity (2) which meant that once my father was gone, we were a single-parent family reliant on state benefits which were a low income (3). We had difficulty affording proper food (a regular meal was "pasta and gravy", no meat or vegetables, which I didn't even realise was unusual until I was 19) and most of my clothes were second-hand (4). And our house was in a pretty awful state of repair, cracked windows and dangerous electrical wiring being two of the simpler issues (5). Ding, Family with Multiple Problems.
Eric Pickles, the Communities Secretary, has been ranting about these families not in terms of their circumstances, but in terms of their behaviour - crime and social disorder, truancy, alcohol abuse, and "ruining the lives of their neighbours".
Hmm. My sister and I were never in trouble with the police, we always had a parental note on the rare occasions when we missed school, the only alcohol in the house during our teenage years was the occasional bottle of wine given to our mother as a gift, and we got on well with the neighbours on both sides. We performed well in school, engaged in extra-curricular activities, got home by our curfew and were basically normal, boring, well-behaved kids.
Which on one level is admittedly irrelevant. My personal circumstances are anecdote, not data. To examine the data, go back to the Fullfact article, which is excellent in that regard and links back to all manner of primary data sources, and indicates that the number of FMPs which also have children exhibiting problem behaviour is closer to 46,000.
What I can say - anecdotally - is that while my teenage self would have accepted the descriptor "Family with Multiple Problems" as an unpalatable but undeniable truth, she'd be rather upset by the idea that to live with those problems was interchangeable with behaving in an antisocial or criminal manner. When getting home at 5pm after doing her homework on the school computers with a bunch of other kids in similar circumstances, she'd be quite put out by Mr Pickles' view that children like her needed to get their truancy under control. When babysitting, for free, the child of someone who volunteered one evening a week at a social group for people with learning difficulties, she'd be quite angry to hear Prime Minister David Cameron assert that people like her and the person she was babysitting for were creating "a huge amount of social problems, for themselves but also for the wider community".
Please, please, please, can we stop conflating "poverty" and "immorality", "lives with problems" and "is a problem", and "not in paid employment" and "does nothing of any use at all."
Tuesday, April 10, 2012
Inaccessible Accessibility
I am, and have been for some years, a holder of a Blue Badge. The Blue Badge is a wonderful thing for access. My badge is up for renewal in a couple of months, and Warwickshire County Council have very helpfully (credit where it's due) sent me a renewal form and some guidelines.
They need proof of:
So far no problem.
BUT!
They don't want the responsibility of handling original documents. They want me to send certified copies.
Okay, that's fairly sensible too. I prefer to keep my original documents in my own posession and I appreciate the effort to reduce the risk of losing them.
According to most of the UK, a certified copy is a photocopy of a document that has been verified as being true by a person who holds a certain position of responsibility. A doctor, a policeman, an MP, a civil servant, you get the idea. The Jobcentre made a certified copy of my marriage certificate when I went in to change my name. Or, that proud institution the Post Office will make certified copies of up to three documents for the fairly reasonable sum of £7.15 as part of their passport and identity services.
These certified copies are good enough for most institutions and can be used for opening bank accounts or getting mortgages, but apparently they're not good enough for Warwickshire County Council's Blue Badge scheme. Warwickshire County Council insist that the certified copies must be made by someone who not only fits the usual criteria, but also knows me personally and is not a relative.
(Amusingly, however, I can self-certify my own photograph for the badge as a "true likeness" without it having to be corroborated by anyone.)
I couldn't quite believe it and phoned them to check. The conversation went a little bit like this:
(Me): I'm a blue badge holder. I don't drive. I'm written up as "socially isolated" on my care plan. I don't know that many non-relatives. Can I bring in my original documents to your offices and wait while you copy them?
Only if you know someone here who can confirm that you are who you say you are.
Oh. No, I don't. Well, can I send normal certified copies from the Post Office?
Do they know you personally at the Post Office?
No, but they do proper legally acceptable Certified Copies...
They have to actually know you and be able to confirm that you are who you say you are. We've had to introduce these measures to combat fraud.
But you seem to have made it difficult for precisely the people who the scheme is aimed at! The reason I don't know people is because it's difficult for me to get out and about!
I can't discuss policy. There must be someone. Your best bet is someone who owns a local business. Do they know you at the local shop?
No, they don't know me at the local shop, because I'm a blue badge holder and as such I don't walk to the shop.
Or your bank?
I bank online. I shop online. I work online. I do most things online, because it's really difficult for me to get out and about and that is why I have a blue badge!
If you're working, how about your boss?
I am self-employed. I don't have a boss and I doubt you'd let me self-certify.
Anyone you know through work who runs their business?
Clients? Some of them would be eligible, but most of them have never met me, because I work online, what with the whole being eligible for a blue badge because it's difficult for me to get around issue. They only know me on email and phone calls.
But they know that you're you - they can do it!
May I ask you a question? Imagine you have a business. Imagine you try to project a professional image to your clients of being capable and self-sufficient. Would you feel comfortable placing yourself in a position of need? Giving one of them your disability benefits confirmation letter to thoroughly examine?
er... I see the problem but it looks like that's what you're going to have to do.
Warwickshire County Council, ladies and gentlemen. Recommending that I go whimpering to my clients. Advising me that I am obliged to do this in order to obtain an access tool. Refusing to accept the perfectly accessible and inexpensive identity-checking service offered by the Post Office. Creating additional barriers. Well done, boys and girls.
There is a happy ending. Another disabled person is helping me out. That doesn't make Warwickshire County Council's attitude acceptable.
Now, to take a deep breath and try to rewrite this post in a less ranty form, in the hope that explaining their error to Warwickshire County Council might lead them to change things in future.
They need proof of:
- My name, in other words my marriage certificate.
- My address, in other words my council tax bill.
- and my eligibility, in other words my letter confirming my award of Disability Living Allowance including the High Rate Mobility component.
So far no problem.
BUT!
They don't want the responsibility of handling original documents. They want me to send certified copies.
Okay, that's fairly sensible too. I prefer to keep my original documents in my own posession and I appreciate the effort to reduce the risk of losing them.
According to most of the UK, a certified copy is a photocopy of a document that has been verified as being true by a person who holds a certain position of responsibility. A doctor, a policeman, an MP, a civil servant, you get the idea. The Jobcentre made a certified copy of my marriage certificate when I went in to change my name. Or, that proud institution the Post Office will make certified copies of up to three documents for the fairly reasonable sum of £7.15 as part of their passport and identity services.
These certified copies are good enough for most institutions and can be used for opening bank accounts or getting mortgages, but apparently they're not good enough for Warwickshire County Council's Blue Badge scheme. Warwickshire County Council insist that the certified copies must be made by someone who not only fits the usual criteria, but also knows me personally and is not a relative.
(Amusingly, however, I can self-certify my own photograph for the badge as a "true likeness" without it having to be corroborated by anyone.)
I couldn't quite believe it and phoned them to check. The conversation went a little bit like this:
(Me): I'm a blue badge holder. I don't drive. I'm written up as "socially isolated" on my care plan. I don't know that many non-relatives. Can I bring in my original documents to your offices and wait while you copy them?
Only if you know someone here who can confirm that you are who you say you are.
Oh. No, I don't. Well, can I send normal certified copies from the Post Office?
Do they know you personally at the Post Office?
No, but they do proper legally acceptable Certified Copies...
They have to actually know you and be able to confirm that you are who you say you are. We've had to introduce these measures to combat fraud.
But you seem to have made it difficult for precisely the people who the scheme is aimed at! The reason I don't know people is because it's difficult for me to get out and about!
I can't discuss policy. There must be someone. Your best bet is someone who owns a local business. Do they know you at the local shop?
No, they don't know me at the local shop, because I'm a blue badge holder and as such I don't walk to the shop.
Or your bank?
I bank online. I shop online. I work online. I do most things online, because it's really difficult for me to get out and about and that is why I have a blue badge!
If you're working, how about your boss?
I am self-employed. I don't have a boss and I doubt you'd let me self-certify.
Anyone you know through work who runs their business?
Clients? Some of them would be eligible, but most of them have never met me, because I work online, what with the whole being eligible for a blue badge because it's difficult for me to get around issue. They only know me on email and phone calls.
But they know that you're you - they can do it!
May I ask you a question? Imagine you have a business. Imagine you try to project a professional image to your clients of being capable and self-sufficient. Would you feel comfortable placing yourself in a position of need? Giving one of them your disability benefits confirmation letter to thoroughly examine?
er... I see the problem but it looks like that's what you're going to have to do.
Warwickshire County Council, ladies and gentlemen. Recommending that I go whimpering to my clients. Advising me that I am obliged to do this in order to obtain an access tool. Refusing to accept the perfectly accessible and inexpensive identity-checking service offered by the Post Office. Creating additional barriers. Well done, boys and girls.
There is a happy ending. Another disabled person is helping me out. That doesn't make Warwickshire County Council's attitude acceptable.
Now, to take a deep breath and try to rewrite this post in a less ranty form, in the hope that explaining their error to Warwickshire County Council might lead them to change things in future.
Wednesday, January 18, 2012
I'm confused by the BBC
The last couple of weeks have seen the Coalition's Welfare Reform Bill (WRB) being voted on in the House of Lords.
There are two main aspects of disability benefits. First is ESA, Employment Support Allowance. This is the money given to people who are unable to work because of illness or disability. Then there is DLA, Disability Living Allowance. This is the money given to people regardless of their income or whether or not they are in work, in recognition of the increased costs that come with disability.
It is possible to get both; it is also possible to be eligible for either one but not the other. I myself get DLA (because I have substantial disability-related costs) but not ESA (because I am working).
Part of the WRB includes plans to replace DLA with PIP, Personal Independence Payments. One of the stated aims of the WRB is to reduce the DLA spend by 20%. Since the DWP's (Department of Work and Pensions) own figures show that fraud is only 0.5%, this means that genuinely disabled people are going to be hit by this - which is why we're all worried.
(Is everyone keeping up with the abbreviations at the back? A cynical person might think that part of the reason for renaming as well as reforming this benefit is to make it far too complicated for the average news column to be able to report on.)
Disability campaigners have been asking for a six-month pause to the WRB so that a proper independent consultation can be carried out, and to start the change slowly with a pilot project to uncover and iron out the teething troubles. We are of the opinion that if the government is going to fiddle about with the benefits that support the most vulnerable, most disabled, and/or most ill people in the country (including many who are terminally ill and only claiming for their last few months of life) they should think really carefully about it and be sure that they will do as little damage to as few people as possible.
Last night, the Lords voted. The government won, by 16 votes, the WRB rattles on to the next stage. The good news is that in order to swing the vote, Lord Freud had to make an awful lot of promises - under oath and on the record - about the implementation of PIP. Our amendments aren't passed, but some of what we were asking for in them has been conceded, and that's more than many of us expected.
What does the BBC have to do with this?
Well, the BBC is confusing me.
First, they ignored the issue. If you were on Twitter, you can't have missed the #spartacusreport hashtag that was top trending in the UK for most of last week. It refers to the Responsible Reform report. Auntie Beeb had time to do all sorts of analysis about middle-class shoplifting, but did not so much as acknowledge our existence.
Then Radio 4's News Quiz did sterling work using comedy to demonstrate exactly how ridiculous the proposals are. Hat-tip to Sandy Toksvig and Sue Perkins in particular.
But from there on in, and in the sections of the Corporation that are defined as News rather than Entertainment, it's been the government line all the way.
For instance, Maria Miller, the person who is laughably job-titled Minister "For" Disabled People, was given unchallenged airtime to claim that Responsible Reform had only used 10% of the responses to the initial WRB proposals. Technically, that's true. There were over 5,000 responses and we only used about 500. Why? Well, the 500 responses we were allowed to use were official responses from "public" people like the Mayor of London (who objected to the proposals on several counts) and organisations like the Papworth Trust, Mind, and Scope (who also objected to the proposals on several counts). The report uses all of the "official" responses to which we were granted access. However, for obvious reasons, we weren't allowed access to the private responses from private individuals. This includes the responses from many campaigners who had written to describe how they, personally, as individuals, would be affected and what their fears were. Yet to hear Miller speak, you'd think we'd cherry-picked a tiny number of supportive statements and ignored thousands of reports in support of the WRB.
Where was the balanced reporting? Where was the skeptical journalist to ask Miller if the thousands of private responses we weren't allowed to use were broadly for or against the government proposals? Why are her vague and often misleading comments allowed to pass unchallenged?
And then this morning, this article (which I'm copy/pasting from in case it gets edited in future, as the BBC often do):
Firstly, the 500,000 losing benefits. The WRB has a stated aim to reduce DLA by 20%. There are 3.2 million people on DLA (source: dwp.research.gov.uk); a 20% reduction is therefore 640,000 genuinely disabled individuals. So we say that the WRB - not the testing - will mean 500,000 people lose benefits partly because it's a nice round number and partly so that no one can accuse us of over-egging the pudding.
Secondly, ministers do not want to make sure we undergo more testing. They want us to undergo different testing (for which they will pay a private company because they think asking our NHS doctors for medical evidence is inappropriate) and they want us to undergo more frequently repeated testing.
We have said that making claimants with incurable conditions undergo frequently repeated testing is a waste of governmental time and money ("no, my leg still hasn't grown back").
We have also said that, particularly with regard to people with mental health issues, too frequently repeated testing causes distress to claimants which may impair their recovery.
We do not pretend, nor have we ever said, that making claimants undergo more testing will mean 500,000 people losing benefits. Those two items don't belong in the same paragraph, let alone the same sentence.
You get the idea. There are scores of examples just from the last two days - far too many to deconstruct all of them. We are not seeing balance from the BBC. First we were dismissed and ignored, now we are being misrepresented as ill-informed scare-mongerers making disjointed and illogical claims that we have never made, while Miller and her ilk are permitted to broadcast spin and propaganda that the WRB itself and the DWP's own statistics disprove.
The reason I feel upset by this behaviour from the BBC when I can usually ignore it from the Daily Mail is the same reason why I feel more betrayed by the 65 Liberal Democrat lords who voted with the government than I do by the 150 Conservative lords. When people or organisations behave in the way you expect, it doesn't bother you - but when people or organisations you believe in let you down, it stings.
We don't expect the BBC to support us, but we expect neutrality, balance, investigation, factual reporting. We're obviously upset that the Lords' vote went against us, but the way the BBC are treating and portraying us only increases the negative image of disabled people and adds insult to injury.
There are two main aspects of disability benefits. First is ESA, Employment Support Allowance. This is the money given to people who are unable to work because of illness or disability. Then there is DLA, Disability Living Allowance. This is the money given to people regardless of their income or whether or not they are in work, in recognition of the increased costs that come with disability.
It is possible to get both; it is also possible to be eligible for either one but not the other. I myself get DLA (because I have substantial disability-related costs) but not ESA (because I am working).
Part of the WRB includes plans to replace DLA with PIP, Personal Independence Payments. One of the stated aims of the WRB is to reduce the DLA spend by 20%. Since the DWP's (Department of Work and Pensions) own figures show that fraud is only 0.5%, this means that genuinely disabled people are going to be hit by this - which is why we're all worried.
(Is everyone keeping up with the abbreviations at the back? A cynical person might think that part of the reason for renaming as well as reforming this benefit is to make it far too complicated for the average news column to be able to report on.)
Disability campaigners have been asking for a six-month pause to the WRB so that a proper independent consultation can be carried out, and to start the change slowly with a pilot project to uncover and iron out the teething troubles. We are of the opinion that if the government is going to fiddle about with the benefits that support the most vulnerable, most disabled, and/or most ill people in the country (including many who are terminally ill and only claiming for their last few months of life) they should think really carefully about it and be sure that they will do as little damage to as few people as possible.
Last night, the Lords voted. The government won, by 16 votes, the WRB rattles on to the next stage. The good news is that in order to swing the vote, Lord Freud had to make an awful lot of promises - under oath and on the record - about the implementation of PIP. Our amendments aren't passed, but some of what we were asking for in them has been conceded, and that's more than many of us expected.
What does the BBC have to do with this?
Well, the BBC is confusing me.
First, they ignored the issue. If you were on Twitter, you can't have missed the #spartacusreport hashtag that was top trending in the UK for most of last week. It refers to the Responsible Reform report. Auntie Beeb had time to do all sorts of analysis about middle-class shoplifting, but did not so much as acknowledge our existence.
Then Radio 4's News Quiz did sterling work using comedy to demonstrate exactly how ridiculous the proposals are. Hat-tip to Sandy Toksvig and Sue Perkins in particular.
But from there on in, and in the sections of the Corporation that are defined as News rather than Entertainment, it's been the government line all the way.
For instance, Maria Miller, the person who is laughably job-titled Minister "For" Disabled People, was given unchallenged airtime to claim that Responsible Reform had only used 10% of the responses to the initial WRB proposals. Technically, that's true. There were over 5,000 responses and we only used about 500. Why? Well, the 500 responses we were allowed to use were official responses from "public" people like the Mayor of London (who objected to the proposals on several counts) and organisations like the Papworth Trust, Mind, and Scope (who also objected to the proposals on several counts). The report uses all of the "official" responses to which we were granted access. However, for obvious reasons, we weren't allowed access to the private responses from private individuals. This includes the responses from many campaigners who had written to describe how they, personally, as individuals, would be affected and what their fears were. Yet to hear Miller speak, you'd think we'd cherry-picked a tiny number of supportive statements and ignored thousands of reports in support of the WRB.
Where was the balanced reporting? Where was the skeptical journalist to ask Miller if the thousands of private responses we weren't allowed to use were broadly for or against the government proposals? Why are her vague and often misleading comments allowed to pass unchallenged?
And then this morning, this article (which I'm copy/pasting from in case it gets edited in future, as the BBC often do):
"The government has headed off a House of Lords defeat over plans to replace the Disability Living Allowance.
Ministers want to amend the system to make sure claimants undergo more testing, but opponents say this will mean 500,000 people will lose benefits."
Firstly, the 500,000 losing benefits. The WRB has a stated aim to reduce DLA by 20%. There are 3.2 million people on DLA (source: dwp.research.gov.uk); a 20% reduction is therefore 640,000 genuinely disabled individuals. So we say that the WRB - not the testing - will mean 500,000 people lose benefits partly because it's a nice round number and partly so that no one can accuse us of over-egging the pudding.
Secondly, ministers do not want to make sure we undergo more testing. They want us to undergo different testing (for which they will pay a private company because they think asking our NHS doctors for medical evidence is inappropriate) and they want us to undergo more frequently repeated testing.
We have said that making claimants with incurable conditions undergo frequently repeated testing is a waste of governmental time and money ("no, my leg still hasn't grown back").
We have also said that, particularly with regard to people with mental health issues, too frequently repeated testing causes distress to claimants which may impair their recovery.
We do not pretend, nor have we ever said, that making claimants undergo more testing will mean 500,000 people losing benefits. Those two items don't belong in the same paragraph, let alone the same sentence.
You get the idea. There are scores of examples just from the last two days - far too many to deconstruct all of them. We are not seeing balance from the BBC. First we were dismissed and ignored, now we are being misrepresented as ill-informed scare-mongerers making disjointed and illogical claims that we have never made, while Miller and her ilk are permitted to broadcast spin and propaganda that the WRB itself and the DWP's own statistics disprove.
The reason I feel upset by this behaviour from the BBC when I can usually ignore it from the Daily Mail is the same reason why I feel more betrayed by the 65 Liberal Democrat lords who voted with the government than I do by the 150 Conservative lords. When people or organisations behave in the way you expect, it doesn't bother you - but when people or organisations you believe in let you down, it stings.
We don't expect the BBC to support us, but we expect neutrality, balance, investigation, factual reporting. We're obviously upset that the Lords' vote went against us, but the way the BBC are treating and portraying us only increases the negative image of disabled people and adds insult to injury.
Friday, November 04, 2011
Disabled, not dead
Yesterday, my Twitter feed was alight with people being gobsmacked by the content of Panorama's so-called "investigation" into benefit fraud. Interestingly, I understand that neither of the major culprits "investigated" and plastered across the BBC's prime viewing have actually been charged with benefit fraud. More worryingly, it appears that several of the activities the "investigator" took umbrage with weren't actually activities that would preclude a benefit claim...
I didn't watch the programme, in the end. Being, y'know, disabled and all, watching lengthy TV programmes late in the evening isn't something I'm very good at. I was going to catch it on iPlayer but have since decided that it will only upset me. So I want to make clear that this post is not a complaint about the Panorama programme because complaining about a programme I didn't watch and don't intend to watch seems rather ridiculous.
But I am qualified to comment on some of the urban myths surrounding disability, because they do impact me and my friends on a pretty regular basis. Facts and figures unless stated otherwise are drawn from HM Govt's Office for Disability Issues overview of official disability statistics, which can be found here.
Myth #1: Disabled people claiming benefits do not work.
In fact, about 48% of disabled people are employed (although this is compared to 78% of non-disabled people). Disability Living Allowance (DLA) is not means-tested and is awarded based on the impact a person's impairments have on certain aspects of their day to day life, such as washing, dressing, cooking, communicating and moving around. Disabled people often incur unavoidable expenses in trying to meet these essential needs, and DLA recognises that it is unfair to attempt to force working families and individuals to try and meet these non-negotiable and unasked-for additional costs out of their earned wages. Some disabled people work and claim Tax Credits, which is another legitimate form of benefit available to working people. And ESA has provision for Permitted Work for people who can only work very limited hours or in a very supported environment.*
Myth #2: Disabled people are obliged to be poor, and may not own assets.
While "a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled," wealth does not make a family immune to disabling illnesses or injuries. If you own your own home and live in it, then in the long run it's cheaper to let you carry on living there as long as possible than to attempt to rehouse you and have to pay Housing Benefit to you once the capital has evaporated.
Myth #3: Disabled people should not engage in physical activities.
Show me any person with an ongoing long-term physical or mental health condition, and I'll show you a person who has been advised by their medical professionals to take up swimming and/or gardening and/or going to a gym in the hope of staying active and healthy in so far as that's possible. It's always recommended, even if it doesn't get formally funded by the NHS under the guise of physiotherapy. Also: Paralympics, anybody?
Myth #4: Disabled people should not have a good time.
This is the most ridiculous of all - the idea that if a disabled person attends a party, or goes to the pub, or goes shopping, or is seen outdoors laughing with their friends, it's an affront to all right-thinking taxpayers and incontrovertible proof that "there's nothing wrong with him".
We live with our conditions. It's not like being sick and miserable for three days, but it's also not like being sick and miserable for three decades. It's more like being sick and miserable for three months, getting an idea of what's happening, spending three months in a horrible chaotic whirl as you realise your life is changing forever, taking anything from a few months to a few years to grieve and come to terms with what is happening to you, and then... you live. Which means you grab every opportunity you can to have a good time and laugh with your friends, just like any other person. You abandon the "miserable" by the side of the road.** We laugh. So sue us. We're not locked in a box out of sight. We're disabled, not dead.
* This is a gross over-simplification because to properly and fully explain would take another ten blogposts.
** At least until the next time you find yourself and your community under attack in the media.
I didn't watch the programme, in the end. Being, y'know, disabled and all, watching lengthy TV programmes late in the evening isn't something I'm very good at. I was going to catch it on iPlayer but have since decided that it will only upset me. So I want to make clear that this post is not a complaint about the Panorama programme because complaining about a programme I didn't watch and don't intend to watch seems rather ridiculous.
But I am qualified to comment on some of the urban myths surrounding disability, because they do impact me and my friends on a pretty regular basis. Facts and figures unless stated otherwise are drawn from HM Govt's Office for Disability Issues overview of official disability statistics, which can be found here.
Myth #1: Disabled people claiming benefits do not work.
In fact, about 48% of disabled people are employed (although this is compared to 78% of non-disabled people). Disability Living Allowance (DLA) is not means-tested and is awarded based on the impact a person's impairments have on certain aspects of their day to day life, such as washing, dressing, cooking, communicating and moving around. Disabled people often incur unavoidable expenses in trying to meet these essential needs, and DLA recognises that it is unfair to attempt to force working families and individuals to try and meet these non-negotiable and unasked-for additional costs out of their earned wages. Some disabled people work and claim Tax Credits, which is another legitimate form of benefit available to working people. And ESA has provision for Permitted Work for people who can only work very limited hours or in a very supported environment.*
Myth #2: Disabled people are obliged to be poor, and may not own assets.
While "a substantially higher proportion of individuals who live in families with disabled members live in poverty, compared to individuals who live in families where no one is disabled," wealth does not make a family immune to disabling illnesses or injuries. If you own your own home and live in it, then in the long run it's cheaper to let you carry on living there as long as possible than to attempt to rehouse you and have to pay Housing Benefit to you once the capital has evaporated.
Myth #3: Disabled people should not engage in physical activities.
Show me any person with an ongoing long-term physical or mental health condition, and I'll show you a person who has been advised by their medical professionals to take up swimming and/or gardening and/or going to a gym in the hope of staying active and healthy in so far as that's possible. It's always recommended, even if it doesn't get formally funded by the NHS under the guise of physiotherapy. Also: Paralympics, anybody?
Myth #4: Disabled people should not have a good time.
This is the most ridiculous of all - the idea that if a disabled person attends a party, or goes to the pub, or goes shopping, or is seen outdoors laughing with their friends, it's an affront to all right-thinking taxpayers and incontrovertible proof that "there's nothing wrong with him".
We live with our conditions. It's not like being sick and miserable for three days, but it's also not like being sick and miserable for three decades. It's more like being sick and miserable for three months, getting an idea of what's happening, spending three months in a horrible chaotic whirl as you realise your life is changing forever, taking anything from a few months to a few years to grieve and come to terms with what is happening to you, and then... you live. Which means you grab every opportunity you can to have a good time and laugh with your friends, just like any other person. You abandon the "miserable" by the side of the road.** We laugh. So sue us. We're not locked in a box out of sight. We're disabled, not dead.
* This is a gross over-simplification because to properly and fully explain would take another ten blogposts.
** At least until the next time you find yourself and your community under attack in the media.
Wednesday, July 27, 2011
Repeat
I know this is ground we've covered before, but a look at today's front pages makes it necessary to go over it again.
In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.
In summary:
Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:
Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".
This is simply not true.
The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!
To apply to be assessed is not "faking".
To have a level of impairment that falls just short of the ESA bar is not "faking".
There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.
To recover from an illness or injury does not mean that the illness or injury was "faked".
There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.
To be too ill to fight is not "faking".
There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.
To return to the taxpaying workforce is not "faking".
A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.
To have alternative resources is not "faking".
Most significantly, there are those who die before the assessment phase is complete.
To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".
I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".
In the UK, we have a welfare system. The disability benefit side of it has been being overhauled for the last few years. Labour started it, the Coalition are continuing it, they're using the same company (Atos) to execute it and the same advisor (Lord Freud) to justify it. This is not a party-political issue - red, blue or yellow, to borrow a phrase, they're all in it together.
In summary:
- If you have a doctor's note stating that you are unable to work because of illness, injury or impairment, you apply for Employment Support Allowance (ESA). For the first 13 weeks of your claim you are paid the "assessment phase" rate of up to £67.50 per week.
- If the assessment classifies you as entirely unable to work, and unlikely to ever be able to work, for instance because you are bedbound and terminally ill with a life expectancy of less than a year, you are granted unconditional ESA at the "support" rate of up to £99.85 per week.
- If the assessment decides that, although your disabilities are substantial, you would be able to do *some* work at *some* point in the future with the right conditions/support/equipment/adjustments, then you are awarded ESA at the "work-related activity" rate of up to £94.25 per week. To continue to receive this you must attend regular work-related activities.
- If the assessment determines that your NHS-diagnosed conditions are not severe enough to substantially impair your ability to work in an office environment, or that you would only require minor adjustments, you are deemed "fit to work". You don't get ESA at all, and are placed on Job Seekers Allowance (JSA) which is a smaller amount of money with much higher conditionality attached. If you are fortunate, there may be a note on your jobseeking file excusing you from mandatory application for specific jobs that would aggravate or be incompatible with your condition (for instance someone with speech and hearing difficulties may be "fit to work" but excused from mandatory application for call-centre jobs).
Leaving aside all the arguments about whether the system is fair, how their fitness-to-work tests relate to what is required to perform a job in the real world, and so on... the Department for Work and Pensions released these statistics yesterday, about ESA applicants over the last two years:
- 7% were incapable of any work (Support group)
- 17% were able to do some sort of work given the correct support (Work-related activity group)
- 39% were deemed to be fit for work and were moved onto jobseeker's allowance
- 36% dropped out of the application process
- 1% of applications were still in progress
Today, the Express have taken these numbers and decided that 1% (still in assessment phase) plus 7% (Support group ESA) plus 17% (WRA group ESA) equals 25% of applicants approved to receive some form of ESA. So far, so true. However, their headline screams that therefore the remaining 75% - those moved onto JSA, and those who drop out of the system entirely - are "faking".
This is simply not true.
The fact that a person has failed to score enough points to get ESA (yes, it really is a points-based computer system) does not mean that they scored no points whatsoever, or even that they're not disabled, just that they're not quite disabled enough to be Officially unfit for work. That's why we have the assessment process! To assess people!
To apply to be assessed is not "faking".
To have a level of impairment that falls just short of the ESA bar is not "faking".
There will also be quite a few applicants who suffered an acute injury or illness (for instance, they were in a car accident) and were advised to apply for ESA as a temporary or worst case scenario - but in the 13-week assessment period, they have recovered well so they have been moved to JSA or have returned to work.
To recover from an illness or injury does not mean that the illness or injury was "faked".
There are also the people who get placed onto Jobseeker's Allowance, and go to appeal, and win. The rate of people winning their appeals is around 40% and this increases to 70% where the appellant has someone to represent them. Regrettably, there are also a number of genuinely disabled people who simply don't have the wherewithal to fight an appeal, and have to attempt to survive without the benefits they need. I myself have been in this situation.
To be too ill to fight is not "faking".
There are people who, during their assessment period, are fortunate to find a suitable job which is prepared to make the necessary adjustments, or who, like myself, have enough personal support around them to enable them to be self-employed.
To return to the taxpaying workforce is not "faking".
A very few people will be fortunate enough to have other resources to fall back on. Perhaps an insurance payout of some kind, or a lottery win, or the sale of assets, will save them from the indignity of having to complete a process that treats them as the worst kind of fraudster from beginning to end.
To have alternative resources is not "faking".
Most significantly, there are those who die before the assessment phase is complete.
To die of a condition is perhaps the strongest possible indicator that the condition was not "faked".
I'd provide more concrete statistics, but we don't have them. Once you leave ESA, you're not monitored. We don't know how many of these people have got jobs, have died, have killed themselves, have left the country... no one cares. The Express just goes ahead and calls them all "fakers".
Wednesday, April 13, 2011
Oh but it's easy!
Anyone who's ever so much as hovered on the fringes of wedding planning will have seen one of these articles. Shocking rise in the cost of the average wedding, picture of tasteless pink bride standing next to cake the size of a respectable starter home, reassurance that it doesn't have to be that way, followed by awesome photographs of a stunning wedding and reception that, according to the bride (I'm afraid it is usually the bride) involved, cost less than £500 and a marvellous day was had by all.
Great! you think, and start reading through for hints and tips. And then you start to realise that what she actually means is that the wedding expenses that were significant enough to be counted only cost her and her husband £500, and she either hasn't realised the cash value of other people's contributions, or she's choosing not to count them in a bid to gain moral high ground on the basis of frugality.
You realise that the wedding was conducted by Uncle John the vicar, who was able to waive all fees from venue hire to bell ringers, and jolly the Church Ladies into making that week's floral decorations in the preferred wedding colours.
You find that the dress (normal shop price: about £800) was made by the bride's ex-housemate who just happens to be a wedding dress designer/seamstress, that the fabulous cake (normal shop price: about £400) was donated by Auntie Linda who just happens to be a baker and decorator of wedding cakes, and that the food (normal shop price about £20 per head) is being provided free of charge by the groom's parents who just happen to own a catering business. A cousin who's on a hairdressing course, an uncle with a posh or classic car, and a friend-of-a-friend who's just setting up in the DJ business are optional.
You are told that "it's easy" to make your own invitations and place cards and so on for a modest outlay of about £50. Assuming, of course, that you have already invested several hundred pounds in a decent trimmer and a selection of corner punches, a proper craft knife and cutting board, a decent printer, endless accessories like glue dots, pritt stick, and backing card - and assuming that you possess a certain degree of design aptitude.
Next you discover that the amazing photos were taken by a professional. The fact that a decent professional photographer will often charge a three or even four-figure sum for shooting a wedding isn't mentioned - the photographer was either another person the couple just happened to know who owed them a massive favour, or he was hired by the families as a gift.
Yes, it turns out that the way to have a wonderful wedding on a budget is to be surrounded by generous, interested family and friends who are already (a) professionals in wedding-related industries, (b) incredibly creative, and/or (c) prepared to spend their own money so that you don't have to. Easy! Erm...
We're spending money on professionals to take care of certain aspects of our wedding. This is not a moral issue.
We're definitely looking forward to getting married, and to having the party with our nearest and dearest, but I think we'll also be glad to escape from the insane and contradictory world of wedding planning.
Great! you think, and start reading through for hints and tips. And then you start to realise that what she actually means is that the wedding expenses that were significant enough to be counted only cost her and her husband £500, and she either hasn't realised the cash value of other people's contributions, or she's choosing not to count them in a bid to gain moral high ground on the basis of frugality.
You realise that the wedding was conducted by Uncle John the vicar, who was able to waive all fees from venue hire to bell ringers, and jolly the Church Ladies into making that week's floral decorations in the preferred wedding colours.
You find that the dress (normal shop price: about £800) was made by the bride's ex-housemate who just happens to be a wedding dress designer/seamstress, that the fabulous cake (normal shop price: about £400) was donated by Auntie Linda who just happens to be a baker and decorator of wedding cakes, and that the food (normal shop price about £20 per head) is being provided free of charge by the groom's parents who just happen to own a catering business. A cousin who's on a hairdressing course, an uncle with a posh or classic car, and a friend-of-a-friend who's just setting up in the DJ business are optional.
You are told that "it's easy" to make your own invitations and place cards and so on for a modest outlay of about £50. Assuming, of course, that you have already invested several hundred pounds in a decent trimmer and a selection of corner punches, a proper craft knife and cutting board, a decent printer, endless accessories like glue dots, pritt stick, and backing card - and assuming that you possess a certain degree of design aptitude.
Next you discover that the amazing photos were taken by a professional. The fact that a decent professional photographer will often charge a three or even four-figure sum for shooting a wedding isn't mentioned - the photographer was either another person the couple just happened to know who owed them a massive favour, or he was hired by the families as a gift.
Yes, it turns out that the way to have a wonderful wedding on a budget is to be surrounded by generous, interested family and friends who are already (a) professionals in wedding-related industries, (b) incredibly creative, and/or (c) prepared to spend their own money so that you don't have to. Easy! Erm...
We're spending money on professionals to take care of certain aspects of our wedding. This is not a moral issue.
We're definitely looking forward to getting married, and to having the party with our nearest and dearest, but I think we'll also be glad to escape from the insane and contradictory world of wedding planning.
Saturday, March 12, 2011
Brave vs Stupid
IF you have a painful injury or condition which manifests itself by way of inflammation...
... and IF you see a doctor and the doctor refers you to physiotherapy and advises you to take ibuprofen (a well-used anti-inflammatory medication) while waiting for the physiotherapy appointment.
Take the freaking ibuprofen already.
It is not brave to struggle along without medication.
You will not get a Brave Little Soldier prize for enduring unnecessary pain.
Pain =/= moral superiority.
If you are worried that taking ibuprofen will "mask the pain" and that this will mean you do more than you should and cause yourself more damage... stop when you think it's sensible, rather than waiting until you are experiencing "oh gosh I'm damaging myself further" levels of pain.
It's a bit like how in order to wake up and function at 7am, you go to bed at 11pm, even though you could stay up longer. You don't insist on waiting until you physically cannot keep your eyes open any more or on going without sleep altogether because you think sleep will "mask" your tiredness.
Yes, pain is the body's alarm system to tell you something's not right.
You've acted on that warning by seeing the doctor and getting the physio referral. Enduring further pain is like leaving a burglar alarm blaring even after the thieves have left the scene and the police are on their way - upsetting and pointless.
It is not clever to refuse to even try your doctor's suggestion.
If you really feel you must not and will not take the medication the doctor tells you to, it is ridiculous to neglect to tell your doctor that you are ignoring his/her advice.
Yes, the over-the-counter box says that if symptoms persist you should consult your doctor for proper medical advice.
You already consulted your doctor and were advised to take ibuprofen - that IS proper medical advice.
Yes, long-term use of NSAIDs including ibuprofen can lead to stomach problems.
No, a few weeks until your physiotherapy appointment does not count as "long term".
And finally, if you must be this much of an idiot, don't expect me to be impressed when you tell me!
I'm pretty certain that the person this refers to doesn't read this blog. But I really needed to get it off my chest, and it wasn't possible at the time.
... and IF you see a doctor and the doctor refers you to physiotherapy and advises you to take ibuprofen (a well-used anti-inflammatory medication) while waiting for the physiotherapy appointment.
Take the freaking ibuprofen already.
It is not brave to struggle along without medication.
You will not get a Brave Little Soldier prize for enduring unnecessary pain.
Pain =/= moral superiority.
If you are worried that taking ibuprofen will "mask the pain" and that this will mean you do more than you should and cause yourself more damage... stop when you think it's sensible, rather than waiting until you are experiencing "oh gosh I'm damaging myself further" levels of pain.
It's a bit like how in order to wake up and function at 7am, you go to bed at 11pm, even though you could stay up longer. You don't insist on waiting until you physically cannot keep your eyes open any more or on going without sleep altogether because you think sleep will "mask" your tiredness.
Yes, pain is the body's alarm system to tell you something's not right.
You've acted on that warning by seeing the doctor and getting the physio referral. Enduring further pain is like leaving a burglar alarm blaring even after the thieves have left the scene and the police are on their way - upsetting and pointless.
It is not clever to refuse to even try your doctor's suggestion.
If you really feel you must not and will not take the medication the doctor tells you to, it is ridiculous to neglect to tell your doctor that you are ignoring his/her advice.
Yes, the over-the-counter box says that if symptoms persist you should consult your doctor for proper medical advice.
You already consulted your doctor and were advised to take ibuprofen - that IS proper medical advice.
Yes, long-term use of NSAIDs including ibuprofen can lead to stomach problems.
No, a few weeks until your physiotherapy appointment does not count as "long term".
And finally, if you must be this much of an idiot, don't expect me to be impressed when you tell me!
I'm pretty certain that the person this refers to doesn't read this blog. But I really needed to get it off my chest, and it wasn't possible at the time.
Tuesday, January 18, 2011
Ugh!
Over the last few months I've been hanging around on a couple of bridal/weddingy forums.
For very good reasons, it's not the Done Thing to out and out criticise other people's wedding choices.
It's acceptable to offer constructive input when asked, and to show respectful interest in the different customs and traditions being observed. That's a good thing. When someone is trying to decide between bows and floral swags to decorate the ends of the pews in their church, it's a good time to offer any experience of those products, but it's not the time to spark a fundamentalist religious debate about whether they should be getting married in a church at all. Tolerance is important in a community and it's great that different people, in different countries, having very different weddings, can all support each other.
This, however, is not a community. This Is My Blog, just like it says at the top of the page, which means it's not inappropriate for me to voice my opinions, and this has been bubbling up inside me for months now. In the interests of civility, I must stress that I recognise that different people have different tastes and if you want any of this stuff at your wedding, you go ahead, it's your wedding. If you are planning a wedding, or you just had one, you may prefer not to read any further. This is your fair warning: you may be offended.
But at last, I must say that I find the following things hideously tacky.
Ohhhhhh, that feels better.
For very good reasons, it's not the Done Thing to out and out criticise other people's wedding choices.
It's acceptable to offer constructive input when asked, and to show respectful interest in the different customs and traditions being observed. That's a good thing. When someone is trying to decide between bows and floral swags to decorate the ends of the pews in their church, it's a good time to offer any experience of those products, but it's not the time to spark a fundamentalist religious debate about whether they should be getting married in a church at all. Tolerance is important in a community and it's great that different people, in different countries, having very different weddings, can all support each other.
This, however, is not a community. This Is My Blog, just like it says at the top of the page, which means it's not inappropriate for me to voice my opinions, and this has been bubbling up inside me for months now. In the interests of civility, I must stress that I recognise that different people have different tastes and if you want any of this stuff at your wedding, you go ahead, it's your wedding. If you are planning a wedding, or you just had one, you may prefer not to read any further. This is your fair warning: you may be offended.
But at last, I must say that I find the following things hideously tacky.
- White hoodies with diamante transfers saying “Bride” or “Maid of Honor”. (American spelling intentional.) Yes, while getting ready for your wedding it's a good idea to wear something warm and comfortable that can absorb any spills. It's good to wear something that is fully front-fastening so it can be removed without disturbing your hair and makeup. But white with diamante? My dear, you will get enough attention today once you're in the dress. Be content.
- Flip-flops with soles that print “Just” and “Married” as you walk along wet sand. My PA spotted these in a craft store and proposed them as the winner of that store's Wedding Tat collection. And believe me, they had some tat.
- Hen parties with “naughty” games and gifts. Well done, it's a (whatever) shaped like a penis. It's not comical, it's not erotic, and the faint air of desperation is unsettling. Lingerie and sex toys can be great, but I can't imagine there's anyone who's actually turned on by pink plastic fluffy handcuffs, or anything with a picture of a cat and “Sex Kitten!” emblazoned across the front.
- Music on the wedding website. Internet access has reached a point where even your parents have it, so a wedding website is no longer necessarily a celebration of self-obsession viewable only by other geeks who aren't invited to the wedding anyway. But automatically playing music is a step in the wrong direction, as are hearts falling across the screen, or anything that won't properly load onto the smartphone of a guest who's got lost on the way to the venue.
- Vistaprint overdose. On the one hand, Vistaprint do a very good line in affordable, fuss-free printing that can be invaluable for things like invitations and RSVP cards. On the other hand, just because they can put your picture on more or less anything, doesn't necessarily mean it's a good idea. The overdosing idea also applies to people who went to a venue dresser for a few flowers/balloons/table decorations, and ended up ordering a twenty-foot-tall inflatable Bride and Groom in the belief that these would somehow look appropriate outside their elegant, classy venue.
- Pretending to be something you're not. This covers people getting married in churches who don't believe in God, people getting married in libraries who don't read, people who order glass carriages and aren't princesses (Kate Middleton got that bit spot-on), and people who order fancy formal meals that they're not sure how to eat. You make some pretty hefty promises on your wedding day - make them as yourselves.
Ohhhhhh, that feels better.
Wednesday, October 27, 2010
Abandoned claims
Woke up this morning to see that a certain right-wing rag has surpassed itself in the propaganda it chooses to spout about ESA.
I'm not going to link to it because it will only upset me and every reader.
The headline asserted that 75% of those who claim ESA are found "fit to work".
This was then broken down that 75% of those who claim ESA were either found "fit to work" or abandoned their claims before testing was complete. The article did not split these figures. It did not differentiate between the Support (never likely to be able to work) group and the Work-Related Activity (may, with help, be able to do some jobs) groups of ESA - from reading the article it seems that they are only counting those who meet the Support group test criteria as "genuine". It proposed that the abandonment of a claim meant that the claimant was clearly "trying it on".
Legitimate reasons why an ESA claim may be started and then abandoned:
If it was any other publication (I hesitate to use the term "newspaper") I would be shocked and appalled by the deliberate lies and misinformation being used to attack disabled people. Unfortunately, I'm getting used to it, and so is everyone else, and all these little drops of poison are being allowed to drip on into the public consciousness unchallenged.
I'm not going to link to it because it will only upset me and every reader.
The headline asserted that 75% of those who claim ESA are found "fit to work".
This was then broken down that 75% of those who claim ESA were either found "fit to work" or abandoned their claims before testing was complete. The article did not split these figures. It did not differentiate between the Support (never likely to be able to work) group and the Work-Related Activity (may, with help, be able to do some jobs) groups of ESA - from reading the article it seems that they are only counting those who meet the Support group test criteria as "genuine". It proposed that the abandonment of a claim meant that the claimant was clearly "trying it on".
Legitimate reasons why an ESA claim may be started and then abandoned:
- The claimant dies.
- The claimant gets better, be it a miracle or a new treatment or being bumped up the waiting list for surgery or getting private treatment.
- The claimant, having lost their job, is offered support and a place to stay by their parents or their children. They decide to abandon their claim and re-start it once their move is complete.
- The claimant looks at the highly personal questions on the form and says "you know what, I'll never be this desperate for money, prostitution is less demeaning."
- The claimant wins an insurance or compensation payout that enables them to survive without benefits.
- Due to their condition, the claimant is unable to understand the importance of filling in the form or unable to remember that the form needs doing.
- Due to their condition, the claimant is unable to fill out the forms - perhaps they have a brain injury or learning disability and cannot read and/or write, perhaps they have issues with their hands and cannot physically hold a pen, perhaps they have a mental health condition that causes panic attacks every time they approach the form.
- Due to their condition, the claimant is unable to access support to fill in the forms - for instance they are unable to go out, they do not yet have formal Social Services support, and their CAB is overstretched with permanently engaged phone lines (I have personal experience of urgently needing to get to the CAB but having to wait until support is available).
- The claimant completed the form, but due to their condition, they are unable to travel to and from the medical examination centre alone, and they are unable to secure help and/or funding to allow them to attend. Because their level of impairment does not exist until ATOS say it does, this is not a valid excuse for non-attendance. (I had this issue with my DLA a few years ago).
- The claimant is sitting at home with the heating off, desperately waiting to hear back from the DWP about their claim, which the DWP has lost.
If it was any other publication (I hesitate to use the term "newspaper") I would be shocked and appalled by the deliberate lies and misinformation being used to attack disabled people. Unfortunately, I'm getting used to it, and so is everyone else, and all these little drops of poison are being allowed to drip on into the public consciousness unchallenged.
Sunday, September 12, 2010
The Hawking Comparison
As the government's attacks on welfare claimants increase, stupid and offensive comments about disabled people are being repeated more and more often. The one which is bothering me today goes something along the lines of:
Yes, that Stephen Hawking bloke does earn his own living, and all power to him for that. However:
1. He is a bona-fide 100% genius, and was already recognised as a genius before his illness was affecting him.
2. Quite possibly because of that genius, he has had access to custom-made adaptive and assistive technology FAR above and beyond the norm. Professor Hawking was using technology in the 80s that is not necessarily available to people with the same condition even today.
3. If the genius aspect was removed - if instead of being Professor Stephen Hawking, PhD, CBE, FRS and however much else of the alphabet you feel like adding, we just had Steve Hawking with seven mediocre GCSEs from the local comp and a bronze swimming certificate - how employable would he be? If the man who holds the workings of the universe in his head were to express an interest in coming to give a lecture at your nearest college or university, it's a fair bet that they would scramble to provide wheelchair access to as much of the campus as possible and make every other adjustment asked for in terms of allowing extra time, ensuring appropriate parking space, and whatever else is in his 'rider'. Would they do the same for someone who had applied for the minimum-wage caretaker's position?
Professor Hawking is a remarkable man and as such he is the exception, not the rule. The only possible answer to "Stephen Hawking has a job, why don't you?" goes something along the lines of "Stephen Hawking has written several best-selling books explaining scientific mysteries which have baffled the finest minds for centuries - why haven't you?"
It's one thing to aspire to the achievements of the most amazing people ever to have lived, but quite another to take them as a benchmark for what is expected of us.
"That Stephen Hawking bloke earns his own living, therefore benefits should only be given to people who are more disabled than he is."
Yes, that Stephen Hawking bloke does earn his own living, and all power to him for that. However:
1. He is a bona-fide 100% genius, and was already recognised as a genius before his illness was affecting him.
2. Quite possibly because of that genius, he has had access to custom-made adaptive and assistive technology FAR above and beyond the norm. Professor Hawking was using technology in the 80s that is not necessarily available to people with the same condition even today.
3. If the genius aspect was removed - if instead of being Professor Stephen Hawking, PhD, CBE, FRS and however much else of the alphabet you feel like adding, we just had Steve Hawking with seven mediocre GCSEs from the local comp and a bronze swimming certificate - how employable would he be? If the man who holds the workings of the universe in his head were to express an interest in coming to give a lecture at your nearest college or university, it's a fair bet that they would scramble to provide wheelchair access to as much of the campus as possible and make every other adjustment asked for in terms of allowing extra time, ensuring appropriate parking space, and whatever else is in his 'rider'. Would they do the same for someone who had applied for the minimum-wage caretaker's position?
Professor Hawking is a remarkable man and as such he is the exception, not the rule. The only possible answer to "Stephen Hawking has a job, why don't you?" goes something along the lines of "Stephen Hawking has written several best-selling books explaining scientific mysteries which have baffled the finest minds for centuries - why haven't you?"
It's one thing to aspire to the achievements of the most amazing people ever to have lived, but quite another to take them as a benchmark for what is expected of us.
Thursday, June 24, 2010
Budget 2010: DLA
Earlier this week, the new coalition government laid out their emergency budget. Many key points, like VAT rising to 20% and child benefit being frozen, are interesting, but I'm not qualified to comment.
What I am qualified to comment on is DLA, or Disability Living Allowance.
Before we go any further, the standard recap. There are two major types of "disability benefit". One is Incapacity Benefit/ESA, which is given to people who are unable to earn a living due to impairment or disability, to cover their basic living costs like food and bills. The other is Disability Living Allowance. This is money given to disabled people, regardless of whether they work or not, in recognition of the fact that disabled life involves higher expenses - having to run a car/get taxis rather than walking/cycling/using public transport, having to buy more expensive prepared meals rather than cooking from scratch, having to purchase and replace mobility aids, etc. Not all ESA claimants get DLA. Not all DLA claimants get ESA. They are different and separate benefits.
The coalition has stated that:
Let's start with these "objective medical assessments", because it seems to have given a lot of lay people the idea that DLA is currently given without medical evidence.
That's simply not true. Firstly, on the form you have to submit details of your GP, and any specialists or other healthcare professionals you see (from consultants to physiotherapists). You are also encouraged to submit any relevant medical reports, and copies of current prescriptions for medication or equipment. Secondly, they write to your GP, who is asked to fill out their own form commenting on your needs and also confirming the medical tests and assessments they have sent you for and the results. Thirdly, if the decision maker feels there is not enough medical evidence, they can demand a medical assessment by a private doctor or other healthcare professional working for a private company, Atos, who are paid a large amount of public money to conduct all government medicals (because asking NHS doctors to do it would just be too economical).
(Interesting aside: did we all see this story about Vikki Bell, a woman who worked for the DWP, was declared unfit for work by Atos in their capacity of assessing government employees, attempted to claim ESA, and was declared entirely fit to work by Atos in their capacity of assessing benefit claimants?)
So let's not pretend there's no medical assessments at present.
Moving on to "ensuring payments are only made for as long as a claimant needs them" - in their Poverty, worklessness and welfare dependency report the coalition made it clear that they regard it as a big problem that 1.1 million people of working age are "persistently" claiming DLA for five years or more.
Well, yes. You cannot claim DLA unless:
1) You have a terminal illness and are expected to die in the next six months.
2) You have had substantial care and/or mobility needs for at least three months and are expected to have them for at least another six months.
It's not a short-term benefit for easily-curable illnesses. It's mostly awarded for permanent issues, and many (perhaps even most, although I don't have the figures to hand) claimants are unlikely to regain their sight, or find that their legs have grown back, or otherwise experience a miracle cure within five years.
And it's also - apparently we cannot repeat this enough - NOT a worklessness benefit.
I am capable of some work. I work. I have worked continuously for almost three years. I earn money. I pay tax. I pay NI. I claim DLA. None of this is contradictory.
I would not, could not, stop claiming just because I work. Once I am using up time and energy on work, I have less time, energy, and flexibility for trying to manage my care needs. Once I am working, it is even more important that I have the ready cash to get taxis when I need them because I can't arrange working life around when a friend can give me a lift. It is more important that I have the extra funds to afford ready-meals or takeaways because I cannot spread a cooking effort out over the entire day. It is more important that I have money to enable me to repair and replace my mobility aids ASAP, using expensive courier services, because I can't afford to be housebound and not working while waiting for a Slow Super Saver postal rate.
Damn right we claim "persistently" - I think it is a forlorn hope on the part of the government that reassessment will cause our needs to vanish or that getting us off DLA will get us into work.
But then, for all the rhetoric, getting us into work isn't the point of the exercise. The point is to reduce the cost. If the only way to do that is by shifting the goalposts (while skimming a nice chunk off the top for their friends at Atos, the private company who conduct all government medical assessments, by creating a need for even more assessments) then that is what they will do.
I suspect the "object" of the new "objective medical assessments" will simply be to declare more people ineligible, regardless of their real needs or the impact the withdrawal of DLA will have on their lives, thus reducing the benefits budget. Regrettably, the eligibility might be reduced but the needs will remain, and someone will have to pick up the pieces - probably the already stretched and rationed health and social care services, as explained by Bendygirl.
What I am qualified to comment on is DLA, or Disability Living Allowance.
Before we go any further, the standard recap. There are two major types of "disability benefit". One is Incapacity Benefit/ESA, which is given to people who are unable to earn a living due to impairment or disability, to cover their basic living costs like food and bills. The other is Disability Living Allowance. This is money given to disabled people, regardless of whether they work or not, in recognition of the fact that disabled life involves higher expenses - having to run a car/get taxis rather than walking/cycling/using public transport, having to buy more expensive prepared meals rather than cooking from scratch, having to purchase and replace mobility aids, etc. Not all ESA claimants get DLA. Not all DLA claimants get ESA. They are different and separate benefits.
The coalition has stated that:
The Government will reform the Disability Living Allowance (DLA) to ensure support is targeted on those with the highest medical need. The Government will introduce the use of objective medical assessments for all DLA claimants from 2013-14 to ensure payments are only made for as long as a claimant needs them.
Let's start with these "objective medical assessments", because it seems to have given a lot of lay people the idea that DLA is currently given without medical evidence.
That's simply not true. Firstly, on the form you have to submit details of your GP, and any specialists or other healthcare professionals you see (from consultants to physiotherapists). You are also encouraged to submit any relevant medical reports, and copies of current prescriptions for medication or equipment. Secondly, they write to your GP, who is asked to fill out their own form commenting on your needs and also confirming the medical tests and assessments they have sent you for and the results. Thirdly, if the decision maker feels there is not enough medical evidence, they can demand a medical assessment by a private doctor or other healthcare professional working for a private company, Atos, who are paid a large amount of public money to conduct all government medicals (because asking NHS doctors to do it would just be too economical).
(Interesting aside: did we all see this story about Vikki Bell, a woman who worked for the DWP, was declared unfit for work by Atos in their capacity of assessing government employees, attempted to claim ESA, and was declared entirely fit to work by Atos in their capacity of assessing benefit claimants?)
So let's not pretend there's no medical assessments at present.
Moving on to "ensuring payments are only made for as long as a claimant needs them" - in their Poverty, worklessness and welfare dependency report the coalition made it clear that they regard it as a big problem that 1.1 million people of working age are "persistently" claiming DLA for five years or more.
Well, yes. You cannot claim DLA unless:
1) You have a terminal illness and are expected to die in the next six months.
2) You have had substantial care and/or mobility needs for at least three months and are expected to have them for at least another six months.
It's not a short-term benefit for easily-curable illnesses. It's mostly awarded for permanent issues, and many (perhaps even most, although I don't have the figures to hand) claimants are unlikely to regain their sight, or find that their legs have grown back, or otherwise experience a miracle cure within five years.
And it's also - apparently we cannot repeat this enough - NOT a worklessness benefit.
I am capable of some work. I work. I have worked continuously for almost three years. I earn money. I pay tax. I pay NI. I claim DLA. None of this is contradictory.
I would not, could not, stop claiming just because I work. Once I am using up time and energy on work, I have less time, energy, and flexibility for trying to manage my care needs. Once I am working, it is even more important that I have the ready cash to get taxis when I need them because I can't arrange working life around when a friend can give me a lift. It is more important that I have the extra funds to afford ready-meals or takeaways because I cannot spread a cooking effort out over the entire day. It is more important that I have money to enable me to repair and replace my mobility aids ASAP, using expensive courier services, because I can't afford to be housebound and not working while waiting for a Slow Super Saver postal rate.
Damn right we claim "persistently" - I think it is a forlorn hope on the part of the government that reassessment will cause our needs to vanish or that getting us off DLA will get us into work.
But then, for all the rhetoric, getting us into work isn't the point of the exercise. The point is to reduce the cost. If the only way to do that is by shifting the goalposts (while skimming a nice chunk off the top for their friends at Atos, the private company who conduct all government medical assessments, by creating a need for even more assessments) then that is what they will do.
I suspect the "object" of the new "objective medical assessments" will simply be to declare more people ineligible, regardless of their real needs or the impact the withdrawal of DLA will have on their lives, thus reducing the benefits budget. Regrettably, the eligibility might be reduced but the needs will remain, and someone will have to pick up the pieces - probably the already stretched and rationed health and social care services, as explained by Bendygirl.
Monday, February 08, 2010
Make Her Stop
Scrolling through an otherwise innocuous twitter feed this afternoon, when up popped a tweet from Disability Now about the latest antics of Heather Mills.
Now, before continuing, it's only fair to point out that, generally, the online disability community regard Ms Mills as a bit of an embarrassment. Her grasp of disability politics is only marginally superior to that which you might expect of a concussed duckling. The major difference being that the duckling isn't trying to market herself as a disability spokesperson.
Usually it's easy enough to ignore her in much the same way as you might ignore a toddler who is acting up just to get some attention. But then every so often, she ups the ante enough to make me reel in shock that a person can be so stupid.
Yup, Heather says she is making a show where non-disabled celebrities pretend to be disabled so they can, in her words, "see what it's like to live with a disability." Worse, she then goes on to equate this with wheelchair use. All together now:
A Wheelchair Is Not A Disability.
A wheelchair is a piece of equipment you might use if you have any one (or more) of a thousand conditions which involve impaired mobility. Disability is what happens when, despite having appropriate equipment such as a wheelchair, you are still faced with more barriers to your day to day life than one person should have to deal with.
By voluntarily using a wheelchair for a week, you learn what it's like to use a wheelchair for a week, safe and certain that it's only for a week, and that if there was an emergency - or if you simply got bored of playing the game - you could just stand up and walk away.
You don't lose your job in a week. You don't lose contact with your friends in a week. You don't spend months on an NHS waiting list in a week. You don't have to try and co-ordinate moving house in a week. On the other side of the coin, you don't develop your upper body strength very much in a week. You don't become part of a community in a week, or learn the myriad tips and tricks for wheelie life.
In short, there is very little to be gained or lost through playing at "Cripples" for a week. At least, until Heather gets involved...
Leaving aside what Ramsay himself might have to say about it if she tried such a thing - that's just dangerous. If you were to suddenly lose your sight, you would be rushed to hospital. You would be there for a while so that they could attempt to restore your sight, during which time you would slowly get used to the disorientation and to doing certain things by touch. If they could not restore your sight, you would (or at least, should) not be discharged until you've been assessed on how you will manage your basic needs at home, whether there is someone to help you manage, and referred to Social Services and an occupational therapist. You don't get dumped into the middle of a kitchen full of gas burners and sharp knives and told to get on with it. That's a reality-tv experience and has nothing to do with learning about disability.
A small glimmer of hope. The article tells us that "Although she said that the programme is in production, Mills did not reveal its transmission date or which broadcaster had commissioned it." So there is a chance that she's spouting pure, unadulterated rubbish. It's sad that this is the best-case scenario.
Now, before continuing, it's only fair to point out that, generally, the online disability community regard Ms Mills as a bit of an embarrassment. Her grasp of disability politics is only marginally superior to that which you might expect of a concussed duckling. The major difference being that the duckling isn't trying to market herself as a disability spokesperson.
Usually it's easy enough to ignore her in much the same way as you might ignore a toddler who is acting up just to get some attention. But then every so often, she ups the ante enough to make me reel in shock that a person can be so stupid.
Yup, Heather says she is making a show where non-disabled celebrities pretend to be disabled so they can, in her words, "see what it's like to live with a disability." Worse, she then goes on to equate this with wheelchair use. All together now:
A wheelchair is a piece of equipment you might use if you have any one (or more) of a thousand conditions which involve impaired mobility. Disability is what happens when, despite having appropriate equipment such as a wheelchair, you are still faced with more barriers to your day to day life than one person should have to deal with.
By voluntarily using a wheelchair for a week, you learn what it's like to use a wheelchair for a week, safe and certain that it's only for a week, and that if there was an emergency - or if you simply got bored of playing the game - you could just stand up and walk away.
You don't lose your job in a week. You don't lose contact with your friends in a week. You don't spend months on an NHS waiting list in a week. You don't have to try and co-ordinate moving house in a week. On the other side of the coin, you don't develop your upper body strength very much in a week. You don't become part of a community in a week, or learn the myriad tips and tricks for wheelie life.
In short, there is very little to be gained or lost through playing at "Cripples" for a week. At least, until Heather gets involved...
"We would also get a chef like Gordon Ramsay, blindfold him, and put him in the kitchen for a week."
Leaving aside what Ramsay himself might have to say about it if she tried such a thing - that's just dangerous. If you were to suddenly lose your sight, you would be rushed to hospital. You would be there for a while so that they could attempt to restore your sight, during which time you would slowly get used to the disorientation and to doing certain things by touch. If they could not restore your sight, you would (or at least, should) not be discharged until you've been assessed on how you will manage your basic needs at home, whether there is someone to help you manage, and referred to Social Services and an occupational therapist. You don't get dumped into the middle of a kitchen full of gas burners and sharp knives and told to get on with it. That's a reality-tv experience and has nothing to do with learning about disability.
A small glimmer of hope. The article tells us that "Although she said that the programme is in production, Mills did not reveal its transmission date or which broadcaster had commissioned it." So there is a chance that she's spouting pure, unadulterated rubbish. It's sad that this is the best-case scenario.
Friday, January 08, 2010
Winter Heating
As some of you may have noticed, it's been rather chilly in the UK lately. At the risk of stating the obvious, this has an impact on people who can't keep themselves warm properly. There are all sorts of reasons why a person might have trouble keeping warm, but the main ones are connected to age or illness. For instance, there are conditions and medications that play havoc with your 'internal thermostat', there's the issue of poor circulation, there's the issue of being unable to move about enough to adequately boost your circulation, and of course there's the issue of poverty, which disproportionately affects elderly and disabled people.
Never fear, the BBC reassured us:
But who is entitled?
Well, there's two different payments. The first is the Winter Fuel Allowance. This is for all UK residents over the age of 60 and is made every winter. It is automatically paid for anyone on a state pension or pension credit, other people who are old enough can apply for it separately regardless of wealth. The payment is between £125 and £400 per person depending on your exact age and how many people are in your household, and has an effective minimum of £250 per household.
The second is the Cold Weather Payment. This is more complicated. More people can get it. There's the pensioners (again, and on top of the Winter Fuel Allowance already recieved). Then there's people on Income Support, Jobseekers' Allowance or ESA who also have a child under five, or a pension or disability premium added to their basic eligibility.
However instead of being paid every winter, it is only paid when there has been a "period of extreme cold weather", defined as seven consecutive days on which the average daily temperature at your postcode's weather station was zero or below. If this happens, a payment of £25 is added to your benefit for each seven-day period.
If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment. You do not need extra heating in this circumstance.
If your child over five is sent home from school, and you have to heat the house during the day for their sake - no payment. You do not need extra heating in this circumstance.
If you are disabled in a way that affects your body's ability to keep warm, but instead of being at home and claiming benefit, you are working from home (either permanently, or because you cannot get into your workplace in the snow) - no payment. You do not need extra heating in this circumstance.
Today Helen Goodman, the Minister for Work and Pensions, was supposed to answer questions in a No 10 webchat. This was keenly followed over on Ouch! and Twitter and unsurprisingly we were all left disappointed. Polite, well-typed and specific policy questions like "What is the specific reason for Winter Fuel Payments not being available to the most vulnerable disabled people as well as pensioners, please?" were ignored in favour of the type of questions that are already very easily answered with a quick search of DirectGov, the type of questions that allowed the Minister to promote the Warm Front Scheme, or questions about individual circumstances such as this gem:
Quite how people like "melita" have the capacity to find out about, submit questions to, and watch a government webcast, yet were unable to contact their local Jobcentres to check their specific eligibility, is beyond me.
Disabled people were told that they already get Disability Living Allowance (DLA) to pay for increased heating costs. It's quite astounding the amount of shortfall that DLA is meant to cover. As Lisy put it:
Another question there that, unsurprisingly, the Minister chose to not answer.
Never fear, the BBC reassured us:
... the government said it would be making cold winter payments because temperatures had been low enough for vulnerable people to qualify... ...Minister Helen Goodman said: "The payments are automatic so everyone entitled will get them and should not worry about turning up their heating."
But who is entitled?
Well, there's two different payments. The first is the Winter Fuel Allowance. This is for all UK residents over the age of 60 and is made every winter. It is automatically paid for anyone on a state pension or pension credit, other people who are old enough can apply for it separately regardless of wealth. The payment is between £125 and £400 per person depending on your exact age and how many people are in your household, and has an effective minimum of £250 per household.
The second is the Cold Weather Payment. This is more complicated. More people can get it. There's the pensioners (again, and on top of the Winter Fuel Allowance already recieved). Then there's people on Income Support, Jobseekers' Allowance or ESA who also have a child under five, or a pension or disability premium added to their basic eligibility.
However instead of being paid every winter, it is only paid when there has been a "period of extreme cold weather", defined as seven consecutive days on which the average daily temperature at your postcode's weather station was zero or below. If this happens, a payment of £25 is added to your benefit for each seven-day period.
If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment. You do not need extra heating in this circumstance.
If your child over five is sent home from school, and you have to heat the house during the day for their sake - no payment. You do not need extra heating in this circumstance.
If you are disabled in a way that affects your body's ability to keep warm, but instead of being at home and claiming benefit, you are working from home (either permanently, or because you cannot get into your workplace in the snow) - no payment. You do not need extra heating in this circumstance.
Today Helen Goodman, the Minister for Work and Pensions, was supposed to answer questions in a No 10 webchat. This was keenly followed over on Ouch! and Twitter and unsurprisingly we were all left disappointed. Polite, well-typed and specific policy questions like "What is the specific reason for Winter Fuel Payments not being available to the most vulnerable disabled people as well as pensioners, please?" were ignored in favour of the type of questions that are already very easily answered with a quick search of DirectGov, the type of questions that allowed the Minister to promote the Warm Front Scheme, or questions about individual circumstances such as this gem:
melita:
hi this Cold Weather Payment is it for everyone as on the directgov web page its as if u have kids under 5 in witch i have 2 kids under 5 so would that mean i get the Cold Weather Payment x
Helen replies:
Melita,
If you are on Income Support and you have a child under 5 years old, you will get a Cold Weather Payment. The same applies if you are on income based Jobseekers Allowance, with a child under 5.
Quite how people like "melita" have the capacity to find out about, submit questions to, and watch a government webcast, yet were unable to contact their local Jobcentres to check their specific eligibility, is beyond me.
Disabled people were told that they already get Disability Living Allowance (DLA) to pay for increased heating costs. It's quite astounding the amount of shortfall that DLA is meant to cover. As Lisy put it:
We're only granted DLA for "care" and "mobility". There's no "heating component" of DLA or an "any other costs" component of DLA. Please explain how we're supposed to pay for heating if all our Mobility component is taken by Motability and all our care component is taken by Social Services?
Another question there that, unsurprisingly, the Minister chose to not answer.
Monday, October 19, 2009
Frustration
Following on from my previous post, I was not successful in contacting the Citizen's Advice Bureau this evening as per the advice on the front page of the DLA form.
We're not talking about getting the form filled out for me, or anything. We're talking about getting through to a receptionist of some sort to try and make an appointment to get some "proper" advice at a later date. Or possibly to ask if there's a different local organisation I could approach for help.
I got home from work and started playing the redial game right up until 7pm when the line closes. All I got was a 'busy' tone.
They're closed all tomorrow, so I'll try again on Wednesday - might get my PA to take me to their office in town, although I can't play their "sit in reception until someone's available" game as I have one of those previously mentioned Social Services meetings to attend halfway through the day.
Like I said before, it's not the fault of the volunteer-staffed, underfunded CAB. But I think it's bloody cheeky of the DWP to advise me that for help with their bureaucracy, I need to access a service that is so flooded with demand that I can't even get through to speak to a receptionist on the phone.
We're not talking about getting the form filled out for me, or anything. We're talking about getting through to a receptionist of some sort to try and make an appointment to get some "proper" advice at a later date. Or possibly to ask if there's a different local organisation I could approach for help.
I got home from work and started playing the redial game right up until 7pm when the line closes. All I got was a 'busy' tone.
They're closed all tomorrow, so I'll try again on Wednesday - might get my PA to take me to their office in town, although I can't play their "sit in reception until someone's available" game as I have one of those previously mentioned Social Services meetings to attend halfway through the day.
Like I said before, it's not the fault of the volunteer-staffed, underfunded CAB. But I think it's bloody cheeky of the DWP to advise me that for help with their bureaucracy, I need to access a service that is so flooded with demand that I can't even get through to speak to a receptionist on the phone.
Sunday, July 19, 2009
This call is being charged at £2 per minute
Today I woke up and looked through my BBC News twitterfeed to see the headline:
"Patients should be charged £20 to see a GP in a bid to limit demands placed on the health service, a centre-rig.. http://tinyurl.com/nwwohp"
Twitter and the 140 character limit. A slightly panicked click-through to the actual story reassures us that there isn't (currently) an intended government policy to charge people £20 for a ten-minute GP's appointment, it's just an idea that a "think tank" called the Social Market Foundation has come up with.
It's pre-9am on a Sunday, I'm still on my first cup of tea, and even so I can think of several things that are wrong with their proposals. Lord knows what this think-tank think they've been doing, but I don't think it was thinking.
First problem: "The group said it would not breach the values of the NHS as charges already applied to dentistry and prescriptions."
Yes, and I can introduce you to people who don't go to the dentist, don't have the necessary dental work done, don't fill their prescriptions, or try things like taking "daily" medications every-other-day, in the name of economy. Generally they end up bouncing on the safety net of emergency care, at an even greater cost to the NHS, once the problem that should have been dealt with in its early stages has been allowed to progress to a much more extreme (and harder/more expensive to deal with) level.
To my mind, charging for essential medical care like this is a breach of the values of the NHS. And just because there's one breach, doesn't mean it's permissible to add a few more.
Second problem: "[David Furness, the author of the report] said "It would get people thinking twice about whether the visit was essential."
Isn't it rather rare to just have one GP's appointment? Most people I know seem to have at least two. There's the first one, where they get told "Have some paracetamol/a bit of a rest/drink more water/make sure you keep it clean/etc, and come back next week if it hasn't cleared up/if it gets worse/if you develop a rash/etc." This is the one where before calling, you say to yourself "is this really bad enough that I need to see a doctor?" and probably the one Mr Furness is thinking about.
But then there's the second one a week later which goes "ah, you're still oozing/wheezing/vomiting, looks like you might be ill after all, let's get you some tests/medications." In an ideal world you'll get prescribed a short course of treatment which resolves the issue and trundle off into the sunset, £40 lighter but perfectly healthy.
Nice idea. However, if you don't get better, there's the third, fourth and fifth appointments, which go "we've got the results of your tests back, and now we need to give you medication/refer you for hospital treatment/send you for more tests/monitor you for a fortnight." Before making these appointments, Mr Furness wants you to think twice about whether it's really essential to carry on trying to establish what's wrong and how to treat it. See previous point about bouncing on the safety net of emergency care and allowing simple, treatable conditions to progress into complex ones.
Third problem: The 250-odd page report crashes my browser after ten minutes, but I did get a chance to double-check on exemptions. Mr Furness feels that instead of "arbitrary" exemptions such as pregnancy or retirement, exemptions from the fees should be based purely on "wealth". He defines "wealthy people" as everyone apart from "children and those receiving tax credits". I could not find any mention of provision for people on other forms of welfare or those on low incomes who are not entitled to or do not claim tax credits. I'm not sure how "children" is any less arbitrary than "pensioners" as a wealth-based category.
The time of my life when I had the most GP's appointments was at the beginning of my illness, when we were trying to figure out what was wrong with me. This makes sense and is not unusual.
This was also, obviously, the time when:
I was therefore not exempt, but also not in a position to hand over £20 per GP's appointment, at the time when I needed it most. My situation was not unusual at all. Also, I was ill. It's not the time to be dumping additional financial hardship onto people. This scheme may be designed to discourage the "worried well" from using up resources, but the people it will impact most are the people who are actually sick and in need of healthcare.
But Mr Furness's final, beautiful demonstration of idiocy had to be: "[he] said the think-tank was opposed to fees being levied on any form of emergency care."
The emergency care service has been creaking at the seams for years for various reasons, including the decreased "Out Of Hours" GP cover. Presented with a choice between phoning a free ambulance to come and visit you at home, or going out to attend a £20 GP appointment, what are most people going to do? I suspect that any savings Mr Furness's ideas might make GP-side would be dwarfed by the increased costs of emergency care.
Mind you, then he could get paid to write a report about how it would be a good idea to charge for that, as well.
"Patients should be charged £20 to see a GP in a bid to limit demands placed on the health service, a centre-rig.. http://tinyurl.com/nwwohp"
Twitter and the 140 character limit. A slightly panicked click-through to the actual story reassures us that there isn't (currently) an intended government policy to charge people £20 for a ten-minute GP's appointment, it's just an idea that a "think tank" called the Social Market Foundation has come up with.
It's pre-9am on a Sunday, I'm still on my first cup of tea, and even so I can think of several things that are wrong with their proposals. Lord knows what this think-tank think they've been doing, but I don't think it was thinking.
First problem: "The group said it would not breach the values of the NHS as charges already applied to dentistry and prescriptions."
Yes, and I can introduce you to people who don't go to the dentist, don't have the necessary dental work done, don't fill their prescriptions, or try things like taking "daily" medications every-other-day, in the name of economy. Generally they end up bouncing on the safety net of emergency care, at an even greater cost to the NHS, once the problem that should have been dealt with in its early stages has been allowed to progress to a much more extreme (and harder/more expensive to deal with) level.
To my mind, charging for essential medical care like this is a breach of the values of the NHS. And just because there's one breach, doesn't mean it's permissible to add a few more.
Second problem: "[David Furness, the author of the report] said "It would get people thinking twice about whether the visit was essential."
Isn't it rather rare to just have one GP's appointment? Most people I know seem to have at least two. There's the first one, where they get told "Have some paracetamol/a bit of a rest/drink more water/make sure you keep it clean/etc, and come back next week if it hasn't cleared up/if it gets worse/if you develop a rash/etc." This is the one where before calling, you say to yourself "is this really bad enough that I need to see a doctor?" and probably the one Mr Furness is thinking about.
But then there's the second one a week later which goes "ah, you're still oozing/wheezing/vomiting, looks like you might be ill after all, let's get you some tests/medications." In an ideal world you'll get prescribed a short course of treatment which resolves the issue and trundle off into the sunset, £40 lighter but perfectly healthy.
Nice idea. However, if you don't get better, there's the third, fourth and fifth appointments, which go "we've got the results of your tests back, and now we need to give you medication/refer you for hospital treatment/send you for more tests/monitor you for a fortnight." Before making these appointments, Mr Furness wants you to think twice about whether it's really essential to carry on trying to establish what's wrong and how to treat it. See previous point about bouncing on the safety net of emergency care and allowing simple, treatable conditions to progress into complex ones.
Third problem: The 250-odd page report crashes my browser after ten minutes, but I did get a chance to double-check on exemptions. Mr Furness feels that instead of "arbitrary" exemptions such as pregnancy or retirement, exemptions from the fees should be based purely on "wealth". He defines "wealthy people" as everyone apart from "children and those receiving tax credits". I could not find any mention of provision for people on other forms of welfare or those on low incomes who are not entitled to or do not claim tax credits. I'm not sure how "children" is any less arbitrary than "pensioners" as a wealth-based category.
The time of my life when I had the most GP's appointments was at the beginning of my illness, when we were trying to figure out what was wrong with me. This makes sense and is not unusual.
This was also, obviously, the time when:
- My job contract had ended and as I was signed off sick, I was not eligible for an extension or able to apply for other jobs. I therefore had no earned income. This makes sense and is not unusual.
- As I was not working, I could not claim or receive tax credits. This makes sense and is not unusual.
- I had not yet been approved to receive any benefits or practical assistance. I therefore had no income at all. This is also not unusual.
I was therefore not exempt, but also not in a position to hand over £20 per GP's appointment, at the time when I needed it most. My situation was not unusual at all. Also, I was ill. It's not the time to be dumping additional financial hardship onto people. This scheme may be designed to discourage the "worried well" from using up resources, but the people it will impact most are the people who are actually sick and in need of healthcare.
But Mr Furness's final, beautiful demonstration of idiocy had to be: "[he] said the think-tank was opposed to fees being levied on any form of emergency care."
The emergency care service has been creaking at the seams for years for various reasons, including the decreased "Out Of Hours" GP cover. Presented with a choice between phoning a free ambulance to come and visit you at home, or going out to attend a £20 GP appointment, what are most people going to do? I suspect that any savings Mr Furness's ideas might make GP-side would be dwarfed by the increased costs of emergency care.
Mind you, then he could get paid to write a report about how it would be a good idea to charge for that, as well.
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