Chapter forty-one
“So, how are we feeling?” Dr Lambert asked.
“Well, I’ve had a rough few weeks. I went to a friend’s wedding about two and a bit weeks ago now, and things are just starting to ease,” Sue answered.
“So, you know you did too much.”
“Well, yes, but sometimes you don’t have much choice, do you?”
“Hum,” a non-committal grunt was Dr Lambert’s only response, causing irritation to spike within Sue. She had resolved to tackle Dr Lambert, get more answers from him, particularly ones that did not include the phrase empty nest syndrome. She supposed the NHS had hardened her, she was less compliant and more ready to challenge; after all it was her body and by extension her life and livelihood.
“I have found however that even though I am doing my exercises every day, attend a circuit class once a week and try to keep building up the distances I can walk, it’s not really happening.”
“I see,” Dr Lambert rested on his hand and looked at Sue over the top of his glasses. “Of course pacing, and-”
“I know all about pacing and the rest, I attended the pain management course,” Sue interrupted him, “I’m doing all the right things, but my mobility is not improving, in fact it is getting worse.”
“I see,” Dr Lambert repeated. “How do you mean exactly.”
“Basically I can’t walk as far as I did a year ago, and the slightest deviation in what I do causes an immediate pain response. In that,” Sue held up her hand as she spoke, indicating she anticipated his question and was about to give a response. “In that when, for example, I clean the bathroom, that’s me for the day. I just have to rest and do nothing else. And I wondered why that is.”
“I see, well if you use different muscles from the norm, then they will hurt because they haven’t been exercised for a while. Plus, there will be a certain amount of deconditioning after all this time.”
“But I am exercising, doing everything I should. I’m not sitting around the house all day, I move around as much as I am able, I don’t think it is deconditioning,” Sue trembled inside as she spoke, she hated confrontation of any kind.
“Well, hopefully the epidural will take away enough of your pain so that you can become more active,” Dr Lambert responded.
“But this is my third epidural, and although it reduced the pain each time, I wasn’t able to increase my mobility. My legs are simply wrecked, and that’s another thing I wanted to ask about. What do you think is causing the problem with my legs?”
Dr Lambert flicked through her file, and then closed it before speaking. “What in particular bothers you about your legs?”
Sue smothered the response of ‘for fucks sake,’ as hadn’t they gone over this time and again?
“They are so weak, at times I have to stop and rest just getting up the stairs. I have all sorts of bizarre pains and sensations within them and walking is so hard. I feel like I have a rubber band around them that stops me from physically moving. At other times they feel so stiff and heavy, oh it’s just the most horrible feeling, and I wanted to know what you though it could be.”
Dr Lambert sat for a few seconds before answering. “I don’t know Miss Bailey.”
Sue was completely knocked off track, how could she challenge and push to get answers when there was nothing to hang a comment onto, nothing to expand upon. He’d shut her down very effectively, and maybe that was the intention because all Sue could come back with was, “Oh.”
Two hours later she was lying on her front on an operating table, a cannula in her hand, a peg on her finger measuring her pulse rate, a blood pressure cuff on, and hooked up to a heart monitor. It didn’t hurt as the needle went in her back, a local anaesthetic had been administered first, it was more like a pressure with the occasional ouch. Sue knew the routine, knew the nurses and the Day Surgery Unit. She looked forward to her cup of tea and a biscuit afterwards, and to possibly six or seven weeks of reduced pain. But in terms of answers to explain her condition, she left knowing no more than when she had arrived.
*****
“He actually said, I don’t know,” John remarked.
“Yep,” Sue nodded as she spoke. “I mean, what can you say to that?”
“My doctor referred me to Dr Lambert, to talk about what sorts of medication could be suitable. He told me to keep taking what I was on and he’d review me in six months. When I went back to my own Doctor, he couldn’t believe it,” Jenny commented.
“The man’s a complete and utter waste of space, if there was someone else to see in his equivalent position I would refuse to back to him,” Sue said.
“Last time I was there, a woman came out of his office in tears,” Barbara put her comment into the pot.
“Oh, I’ve seen that before,” Claire confirmed.
“Anyway, I’ll go and get the drinks, three cappuccinos and a latte?” Sue checked, although their little group was nothing if not predictable in the beverage stakes. They had become fortnightly regulars at the supermarket café, having decided that it provided the most comfortable chairs, was fully accessible and situated within an equal distance of everyone. Sue’s dad brought her along, it was only ten minutes in the car, if that, but Sue’s back simply couldn’t cope with the bus journey.
They were a tight little group, they saw each other at their lowest, but also shared in each other’s triumphs. Jenny had gained a little more mobility in her left leg, and Barbara had become more relaxed and open over time. They chatted about their families, and shared anecdotes, but inevitably their discussion increasingly revolved around the benefits system. They were all on the conveyor belt, trying to claim benefits, being turned down for benefits, making appeals against being turned down for benefits or receiving benefits, but awaiting the call to be re-assessed. They feared over their financial future, and what would be taken from them next. The system had stripped them of their citizenship, they no longer had the right to exist but had to grovel before a state, a government that saw them as an inconvenience. And it took its toll. Barbara still struggled emotionally and had added anti-depressants to her long list of medication, but she did at least now talk to the group. They helped each other, there wasn’t a situation within the system that one of them hadn’t already been through, and they often joked they should set up their own benefits advice service.
“It’s just here,” Sue pointed to the table and the young man placed the tray down. “That’s great, thank you.”
She had been embarrassed to ask one of the assistants to carry the beverages down for her at first, but as she now used a stick all the time, there was little she could do herself. Sue didn’t mind the need to use her walking stick, it certainly helped and had gave the extra support she needed but it was yet another indicator of her worsening condition that no doctor had yet diagnosed. Of the four of them only Barbara walked without any kind of aid, but her hands were crippled with arthritis and Sue suspected she would rather make several journeys, carrying one cup at a time, then, ‘inconvenience,’ any one of the café employees.
“How did your medical go Sue?” Claire asked.
“Oh yes, I forgot you’d just had it,” Jenny added.
“I’m not sure to be honest,” Sue replied, and related her experience. “I’m not expecting to get it.”
“I don’t think anyone does,” John commented. “Did anyone see the documentary the other night? A doctor went undercover to train as a TOST assessor-”
“On Wednesday?” Sue interrupted.
“Yes.”
“Oh, I saw that, it was absolutely heart breaking,” Claire added.
“Why what happened?” Barbara asked.
Claire and Sue indicated for John to fill in the blanks.
“This doctor went undercover and took a secret camera, so that he could film the training process TOST assessors go through. The trainer-”
“It’s a three hundred and fifty million contract this French company have been given you know, sorry John,
I’m interrupting.” Sue went back to drinking her chai latte.
“So, anyway, at the initial meeting the woman training them admitted quite openly that the assessment wasn’t fit for purpose, and said that although they hadn’t been officially given set numbers to get people off benefits, that was the slant of the assessment and assessors who didn’t hit their targets would be reprimanded.”
“Good grief,” Barbara commented.
“Oh, that wasn’t the worse of it.” Sue picked upon John’s thread. “Apparently in order to get full points for loss of a limb, one leg, for example, isn’t enough, it has to be bilateral. The trainer said if you have someone with only one arm, who has lost all the digits bar one finger on her remaining hand, they wouldn’t get the points because they could push a button with that finger.”
“Yes,” Claire confirmed, “and the undercover Doctor said, what job is someone going to get where they have to sit and just push a button, but the assessor said it didn’t matter, they could do it and that’s enough.”
“It’s just ridiculous,” Sue said, “I mean, look at us. Which employer in their right mind would take one of us on knowing we’d be off sick after the first day, when there are millions of unemployed to choose from?”
“Exactly,” John agreed. “But since when did common sense operate in the benefits system?”
“Well, quite,” Barbara conferred.
“What about you Jenny, where are you at with all this?” Claire asked.
“Waiting for my appointment for my medical assessment, I filled the booklet in and sent it off around three weeks ago, so I know it won’t be much longer.”
“Aye, I’m sure I’m about due to be called back. It’s just over five months since I won my appeal,” John said.
“You should be alright though, surely?” Barbara commented. “You’ve gotten a lot worse since your last assessment John.”
“We may know that Barbara, but convincing that lot at the DWP is another thing entirely, as we’re all painfully aware. When I was initially turned down one of the reasons given was that I could look after my cat, I mean it’s hard to argue against such stupidity.”
Three grunts of agreement rang out.
“That’s ridiculous, I mean a cat? It’s not like you’re taking it for walks or anything, how does that mean you are fit for work for god’s sake? I’m sure they just make it up as they go along,” Sue commented.
The conversation continued as Sue looked at each of her friends in turn, thought of how they’d grown, become more hardened and cynical because of a system that sort to vilify them. Barbara, John, Jenny, and no doubt Claire too when she changed from incapacity benefit to ESA, they’d all worked before something, not of their own making, had happened to their bodies and would love nothing more than to be helped back to work. Yet the NHS seemed to have neither the inclination nor the funding to respond appropriately to their problems, and the DWP was convinced that they’d all willingly given up their comfortable lifestyle with good jobs and family holidays, to exist on nothing; to budget five pounds a week on food, to freeze all winter, to watch their homes become shabby, to be ashamed to say, ‘I don’t work,’ when people asked their employment. Why would they do that? Surely the fact that they all struggled in such ways was all the proof anyone needed, to know they couldn’t work. Sue took a deep drink of her latte, the only drink she ever bought out, once a fortnight, and closed her eyes to ease the burning behind them.
Chapter forty-two
“Let’s have a look,” Mark Bailey extended his arm and took the brown envelope his daughter offered. Sue had begun to dread the postman arriving, to feel her shoulders slump at the sight of the familiar brown shade. That morning her initial reluctance to open up the envelope had proven to be spot on. It was the results of her medical assessment, and the roller coaster of points scored had continued. In the last few years she’d gone from zero, to six, to fifteen, to twelve and now she was back to zero.
“How can you have scored zero?” her mum asked.
“I don’t know, but I did. Arghh…it’s just so, well it’s just rubbish, a pointless exercise that bears no relation to what is actually happening to my body.”
“Well, I don’t know what you have to do, to make these people see reason. Let’s have a look Mark.”
Her dad shared the sheet between them as Sue stood in front, watching their gaze skim over the latest ruling to affect her life.
Miss Bailey reports problems with back pain. She attended a medical assessment during which she stated in her typical day description that she Client is able to get up out of bed independently, rolling out of bed. She has no problems with having a bath or dressing. She is able to make sandwiches and hot drinks for herself. Client has assistance from her mum to complete the hovering and gardening. She is able to wash dishes. She is able to go up and down stairs despite back problems by using a handrail and resting halfway. She walks for about 10 minutes to the village. Her parents complete the bulk of her shopping. She uses public transport when she needs to and spends her day writing short stories, using a laptop, reading and crocheting. She has no problems socialising and interacting with people. She no problem using a phone and no difficulty completing the ESA50 form. The healthcare professional observed her to rise twice from sitting in an upright chair (no chair arms) without physical assistance from another person. She used one stick to walk 20 metres to the examination room and was able to get onto the couch without assistance. She did not appear to have any difficulty using a step to get onto the couch and was able to sit on a chair with a back for 18 minutes. She was able to crouch down more than half way to the floor. Her spinal curves were normal. She sees her GP when needed and pain management. She takes moderate amounts of medication. Overall evidence would not indicate a significant functional impairment. No mental health problems reported.
I am satisfied that the descriptors have been fully justified with clinical finding, observations and extracts taken from the typical day history provided by Miss Bailey. The medical report was appropriate, complete and covered all the area of incapacity described by Miss Bailey as well as including a typical day history and full set of clinical findings.
The Decision Maker has considered the Healthcare Professional’s report and the Limited Capacity for Work Questionnaire and has decided that Sue Bailey has not achieved 15 points from the appropriate descriptors.
As a result Miss Sue Bailey is no longer assessed as having Limited Capacity for Work therefore Limited Capacity for Work is not accepted, and is therefore not entitled to Employment and Support Allowance.
“Well, there you go then,” her dad said. “Not only is it full of rubbish, it’s badly written as well. You’ll appeal against it?”
“Of course, I mean what does it actually say, I can make a sandwich, get ready and walk for ten minutes, and that’s supposed to mean I can do a full day’s work? I mean the points it makes are just nothing, they’re just completely inconsequential.”
“They are mind,” her mum agreed. “I’ll put the kettle on.”
“I mean, what about all the stuff it doesn’t say, that I can’t stand for long, walk for long, I mean ten minutes is nothing and I told her some days I can’t even do that. Christ, sometimes I’m housebound for weeks at a time. They’ve cherry picked any comment that can be twisted to fit into the mould that says I’m entitled to nothing.”
“Well, that’s all these people are there to do, to get people off benefits,” her dad stated.
“And I mean it states I walked 20 metres in the examination room, twenty metres? It was a tiny office; it couldn’t have been more than five metres at the most.”
“Yes, yes, they’ll write anything and until people start challenging this lot in court they’re going to carry on getting away with it,” Mark Bailey stated.
Sue was in full swing now, outrage fuelling her rant. “And apparently I sat for eighteen minutes, I wasn’t even in the room that long, I was in and out in just over ten.”
“That’s right,” her mam agreed. “We’d just bought a cup of coffee and you were texting for your dad to come back and pick you up.”
“And that bit, where is it,” Sue picked the letter up and scanned the contents once more. “That’s it, “she spends her day writing short stories, using a laptop, crocheting,” I mean don’t I have the most idyllic life? No mention of the fact that I only write for short periods and some days not at all because I can’t sit for long no mention of pain that makes you want to scream. It’s like to get benefits you have to just sit on your arse, sorry mam, and do nothing, just veg and let your condition get worse because god forbid you try and help yourself. If you didn’t have hobbies and things to focus upon, it wouldn’t be long before you were falling into depression.”
“You’re right. Maybe you should go back down and see your MP, or whoever he sends to cover?” her dad suggested.
“Maybe, but that was just a waste of time if you remember. I saw Nigel, I think his name was, and all he did was put me in touch with the jobcentre plus, who apologised for any difficulties I’d had with them on the phone and invited me in to see the adviser I’ve seen god knows how many times in the past and who knows sod all about helping people in my position.”
“Do you know, your language is getting worse, I’ve never heard you swear so much before,” her mam stated as she handed her a mug of tea.
Sue was somewhat blindsided by the comment, which at least made her pause to get breath. “Well, it’s this lot,” she shook the paper she still gripped in her hand. “They drive you to it.”
“Well, phone and tell them you intend to appeal and take it from there,” her dad said, his tone quiet and matter of fact.
“Yes, I will, I’ll do it this afternoon. I’m just getting sick of it, you know?” Sue replied.
Her dad put an arm around her waist and gave it a squeeze. “We know.”
An Ordinary Working Man Page 26