It’s two-and-a-half years since I lost my mum to alcohol. At the time I was 21 and she was 49. It was a bitter yet inevitable end to a battle with a drug that had gradually increased its merciless grip on her over many years. Ashamed as I am to admit this, her death brought momentary relief. I had suddenly been liberated from an all-consuming anxiety; I wasn’t waiting to be called with yet more bad news. I wasn’t dreading talking to a mother whom I loved and hated in equal measure, whose wildly erratic state left me unsure of how to address her, what to say. Yet a harrowing period of depression quickly ensued, and I once again found myself doing what life as the child of an alcoholic had made me an expert of: concealing my true feelings and putting on a brave face.
My family had for years grieved for the woman and the life we knew before she became the puppet of a drug. A deafening silence haunted our house when Mum was drunk. Nobody spoke as she staggered around; as she sat at the dinner table barely able to spoon food into her mouth; as she attempted to engage you in fruitless, incomprehensible conversation. Instead we hoped to navigate the fragile situation just long enough for her to fall asleep or for the drunken monster that inhibited her to take its leave.
Chaos frequently reigned. Bitter words were hurled back and forth until both parties were so absorbed by regret and guilt that silence could once again rule, choking us all.
I resolved at the time of my mum’s death to speak openly about her alcoholism because I can’t bear to be complicit in the silence surrounding the issue. Between 2004-14, alcohol-related deaths in England rose by a staggering 13%. My loss is irretrievable, but others can be prevented, and starting a conversation around alcoholism is the first step in changing the national attitude towards this pandemic.
It is only by reaching out to the children of alcoholics that we can hope to definitively break the cycle of addiction
Though the plight of alcoholics is awful – the demonisation by society (medical professionals included), cuts to mental health services, the ready availability of the drug … the list goes on – often overlooked are the struggles faced by their children. According to a report by the National Association for Children of Alcoholics (Nacoa), children of alcoholics are six times more likely to witness domestic violence, five times more likely to develop an eating disorder, three times more likely to consider suicide, two times more likely to commit criminal offences and two times more likely to have difficulties at school. Perhaps most frightening is the indomitable perpetuity of this ravaging plague; children of alcoholics are three times more likely to develop drug or alcohol problems themselves.
As of December 2016, a review by Public Health England suggests the financial burden could be as much as £52bn per year. This accounts for the cost to the NHS of dealing with alcohol-related illness, alcohol-related crime and the loss of productivity problem drinking engenders. This figure does not, then, account for the money required to combat the multitude of problems that blight the families of alcoholics. No such figure exists because these families remain hidden; the stigma around alcoholism is so great that those affected harbour guilt, embarrassment and shame.
Just as there is no single profile of an alcoholic, there is no single profile of their children. My mother was a successful professional in the NHS, working as an advanced practitioner until four years before her death. She had an infectious character that lit up a room: vivacious, bountiful in love and deeply compassionate. At the time of her death, I was two years into a languages degree. I have since completed this and am now training to become a teacher, largely inspired by the bedrock of stability and normality that school provided me with as a child. I am an “overachiever”.
My record hides a desperate truth, however: the stories of resilience many of us COAs unknowingly share must not be championed as “inspiring”, because then we continue to whitewash a much darker reality and, crucially, fail to get to the crux of the problem.
There is hope for change, however. Following Labour MP Jonathan Ashworth’s frank admission to parliament about his experience as the child of an alcoholic and the urgent need to deal with the wider harm caused by the drug, this month there will be a new strategy to support children of alcoholics (COAs).
Furthermore, the first ever manifesto for children of alcoholics coincided with COA Week and Nacoa’s annual lecture; contains a 10-point plan to help the one in five children affected by alcohol.
Currently, not a single local authority in the UK has a strategy that targets COAs, and neither the social care nor the public health system has developed effective strategies to support them. This manifesto, written by policymakers, medical experts, charities and children of alcoholics, demands that the government appoint a minister responsible for coordinating policy. The third sector must no longer have to take the burden of supporting COAs; as the number of alcohol-related admissions continues to rise, already underfunded drug and alcohol services are seeing further cuts. Local authorities require proper funding to deliver crucial physical and emotional support to children in need.
It is only by reaching out to the children of alcoholics that we can hope to definitively break the cycle of addiction that has a stranglehold upon the nation. By failing to do so – by remaining silent on the matter – we fail them and condemn thousands of children to a miserable fate, while facilitating the very issue we claim as a nation to find so repulsive.
If you would like to write a blogpost for Views from the NHS frontline, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.
Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.
One night in May, my wife sat up in bed and said, “I’ve got this awful pain just here.” She prodded her abdomen and made a face. “It feels like something’s really wrong.” Woozily noting that it was 2am, I asked what kind of pain it was. “Like something’s biting into me and won’t stop,” she said.
“Hold on,” I said blearily, “help is at hand.” I brought her a couple of ibuprofen with some water, which she downed, clutching my hand and waiting for the ache to subside.
An hour later, she was sitting up in bed again, in real distress. “It’s worse now,” she said, “really nasty. Can you phone the doctor?” Miraculously, the family doctor answered the phone at 3am, listened to her recital of symptoms and concluded, “It might be your appendix. Have you had yours taken out?” No, she hadn’t. “It could be appendicitis,” he surmised, “but if it was dangerous you’d be in much worse pain than you’re in. Go to the hospital in the morning, but for now, take some paracetamol and try to sleep.”
Barely half an hour later, the balloon went up. She was awakened for the third time, but now with a pain so savage and uncontainable it made her howl. The time for murmured assurances and spousal procrastination was over. I rang a local minicab, struggled into my clothes, bundled her into a dressing gown, and we sped to St Mary’s Paddington at just before 4am.
The flurry of action made the pain subside, if only through distraction, and we sat for hours while doctors brought forms to be filled, took her blood pressure and ran tests. A registrar poked a needle into my wife’s wrist and said, “Does that hurt? Does that? How about that?” before concluding: “Impressive. You have a very high pain threshold.”
The pain was from pancreatitis, brought on by rogue gallstones that had escaped from her gall bladder and made their way, like fleeing convicts, to a refuge in her pancreas, causing agony. She was given a course of antibiotics and, a month later, had an operation to remove her gall bladder.
“It’s keyhole surgery,” said the surgeon breezily, “so you’ll be back to normal very soon. Some people feel well enough to take the bus home after the operation.” His optimism was misplaced. My wife came home the following day filled with painkillers. When they wore off, she writhed with suffering. After three days she rang the specialist, only to be told: “It’s not the operation that’s causing discomfort – it’s the air that was pumped inside you to separate the organs before surgery.” Once the operation had proved a success, the surgeons had apparently lost interest in the fallout.
During that period of convalescence, as I watched her grimace and clench her teeth and let slip little cries of anguish until a long regimen of combined ibuprofen and codeine finally conquered the pain, several questions came into my head. Chief among them was: “Can anyone in the medical profession talk about pain with any authority?” From the family doctor to the surgeon, their remarks and suggestions seemed tentative, generalised, unknowing – and potentially dangerous: Was it right for the doctor to tell my wife that her level of pain didn’t sound like appendicitis when the doctor didn’t know whether she had a high or low pain threshold? Should he have advised her to stay in bed and risk her appendix exploding into peritonitis? How could surgeons predict that patients would feel only “discomfort” after such an operation when she felt agony – an agony that was aggravated by fear that the operation had been a failure?
I also wondered if there were any agreed words that would help a doctor understand the pain felt by a patient. I thought of my father, a GP in the 1960s with an NHS practice in south London, who used to marvel at the colourful pain symptoms he heard: “It’s like I’ve been attacked with a stapler”; “Like having rabbits running up and down my spine”; “It’s like someone’s opened a cocktail umbrella in my penis …” Few of them, he told me, corresponded to the symptoms listed in a medical textbook. So how should he proceed? By guesswork and aspirin?
There seemed to be a chasm of understanding in human discussions of pain. I wanted to find out how the medical profession apprehends pain – the language it uses for something that’s invisible to the naked eye, that can’t be measured except by asking for the sufferer’s subjective description, and that can be treated only by the use of opium derivatives that go back to the middle ages.
When investigating pain, the basic procedure for clinics everywhere is to give a patient the McGill pain questionnaire. Developed in the 1970s by two scientists, Dr Ronald Melzack and Dr Warren Torgerson, both of McGill University in Montreal, it is still the main tool for measuring pain in clinics worldwide.
Melzack and his colleague Dr Patrick Wall of St Thomas’ Hospital in London had already galvanised the field of pain research in 1965 with their seminal “gate control theory”, a ground-breaking explanation of how psychology can affect the body’s perception of pain. In 1984, the pair went on to write Wall and Melzack’s Textbook of Pain, the most comprehensive reference work in pain medicine. It has gone through five editions and is currently more than 1,000 pages long.
In the early 1970s, Melzack began to list the words patients used to describe their pain and classified them into three categories: sensory (which included heat, pressure, “throbbing” or “pounding” sensations), affective (which related to emotional effects, such as “tiring”, “sickening”, “gruelling” or “frightful”) and lastly evaluative (evocative of an experience – from “annoying” and “troublesome” to “horrible”, “unbearable” and “excruciating”).
You don’t have to be a linguistic genius to see there are shortcomings in this range of terms. For one thing, some words in the affective and evaluative categories seem interchangeable – there’s no difference between “frightful” in the former and “horrible” in the latter, or between “tiring” and “annoying” – and all the words share an unfortunate quality of sounding like a duchess complaining about a ball that didn’t meet her standards.
But Melzack’s grid of suffering formed the basis of what became the McGill pain questionnaire. The patient listens as a list of “pain descriptors” is read out and has to say whether each word describes their pain – and, if so, to rate the intensity of the feeling. The clinicians then look at the questionnaire and put check marks in the appropriate places. This gives the clinician a number, or a percentage figure, to work with in assessing, later, whether a treatment has brought the patient’s pain down (or up).
Some men may find it hard to imagine anything more agonising than toothache or a tennis injury
A more recent variant is the National Initiative on Pain Control’s pain quality assessment scale (PQAS), in which patients are asked to indicate, on a scale of 1 to 10, how “intense” – or “sharp”, “hot”, “dull”, “cold”, “sensitive”, “tender”, “itchy”, etc – their pain has been over the past week.
The trouble with this approach is the imprecision of that scale of 1 to 10, where a 10 would be “the most intense pain sensation imaginable”. How does a patient “imagine” the worst pain ever and give their own pain a number? Some men may find it hard to imagine anything more agonising than toothache or a tennis injury. Women who have experienced childbirth may, after that experience, rate everything else as a 3 or 4.
I asked some friends what they thought the worst physical pain might be. Inevitably, they just described nasty things that had happened to them. One man nominated gout. He recalled lying on a sofa, with his gouty foot resting on a pillow, when a visiting aunt passed by; the chiffon scarf she was wearing slipped from her neck and lightly touched his foot. It was “unbearable agony”.
A brother-in-law nominated post-root-canal toothache – unlike muscular or back pain, he said, it couldn’t be alleviated by shifting your posture. It was “relentless”. A male friend confided that a haemorrhoidectomy had left him with irritable bowel syndrome, in which a daily spasm made him feel “as if somebody had shoved a stirrup pump up my arse and was pumping furiously”. The pain was, he said, “boundless, as if it wouldn’t stop until I exploded”. A woman friend recalled the moment the hem of her husband’s trouser leg snagged on her big toe, ripping the nail clean off. She used a musical analogy to explain the effect: “I’d been through childbirth, I’d broken my leg – and I recalled them both as low moaning noises, like cellos; the ripped-off nail was excruciating, a great, high, deafening shriek of psychopathic violins, like nothing I’d heard – or felt – before.”
It seems a shame that these eloquent descriptions are reduced by the McGill questionnaire to words like “throbbing” or “sharp”, but its function is simply to give pain a number – a number that will, with luck, be decreased after treatment, when the patient is reassessed.
This procedure doesn’t impress Professor Stephen McMahon of the London Pain Consortium, an organisation formed in 2002 to promote internationally competitive research into pain. “There are lots of problems that come with trying to measure pain,” he says. “I think the obsession with numbers is an oversimplification. Pain is not unidimensional. It doesn’t just come with scale – a lot or a little – it comes with other baggage: how threatening it is, how emotionally disturbing, how it affects your ability to concentrate. The measuring obsession probably comes from the regulators who think that, to understand drugs, you have to show efficacy. And the American Food and Drug Administration don’t like quality-of-life assessments; they like hard numbers. So we’re thrown back on giving it a number and scoring it. It’s a bit of a wasted exercise because it’s only one dimension of pain that we’re capturing.”
Illustration: Matthew Richardson
Pain can be either acute or chronic, and the words do not (as some people think) mean “bad” and “very bad”. “Acute” pain means a temporary or one-off feeling of discomfort, which is usually treated with drugs; “chronic” pain persists over time and has to be lived with as a malevolent everyday companion. But because patients build up a resistance to drugs, other forms of treatment must be found for it.
The Pain Management and Neuromodulation Centre at Guy’s and St Thomas’ Hospital in central London is the biggest pain centre in Europe. Heading the team there is Dr Adnan Al-Kaisy, who studied medicine at the University of Basrah, Iraq, and later worked in anaesthetics at specialist centres in England, the US and Canada.
“I’d say that 55 to 60% of our patients suffer from lower back pain,” he says. “The reason is, simply, that we don’t pay attention to the demands life makes on us, the way we sit, stand, walk and so on. We sit for hours in front of a computer, with the body putting heavy pressure on small joints in the back.” Al-Kaisy reckons that in the UK the incidence of chronic lower back pain has increased substantially in the last 15 to 20 years, and that “the cost in lost working days is about £6 to 7 billion”.
Elsewhere the clinic treats those suffering from severe chronic headaches and injuries from accidents that affect the nervous system.
Do they still use the McGill questionnaire? “Unfortunately yes,” says Al-Kaisy. “It’s a subjective measurement. But pain can be magnified by a domestic argument or trouble at work, so we try to find out about the patient’s life – their sleeping patterns, their ability to walk and stand, their appetite. It’s not just the patient’s condition, it’s also their environment.”
The challenge is to transform this information into scientific data. “We’re working with Professor Raymond Lee, chair of Biomechanics at the South Bank University, to see if there can be objective measurement of a patient’s disability due to pain,” he says. “They’re trying to develop a tool, rather like an accelerometer, which will give an accurate impression of how active or disabled they are, and tell us the cause of their pain from the way they sit or stand. We’re really keen to get away from just asking the patient how bad their pain is.”
Some patients arrive with pains that are far worse than backache and require special treatment. Al-Kaisy describes one patient – let us call him Carter – who suffered from a terrible condition called ilioinguinal neuralgia, a disorder that produces a severe burning and stabbing pain in the groin. “He’d had an operation in the testicular area, and the inguinal nerve had been cut. The pain was excruciating: when he came to us, he was on four or five different medications, opiates with very high dosages, anticonvulsive medication, opioid patches, paracetamol and ibuprofen on top of that. His life was turned upside down, his job was on the line.” The utterly stricken Carter was to become one of Al-Kaisy’s big successes.
Since 2010, Guy’s and St Thomas’ has offered a residential programme for adults whose chronic pain hasn’t responded to treatment at other clinics. The patients come in for four weeks, away from their normal environment, and are seen by a motley crew of psychologists, physiotherapists, occupational health specialists and nursing physicians who between them devise a programme to teach them strategies for managing their pain.
Many of these strategies come under the heading of “neuromodulation”, a term you hear a lot in pain management circles. In simple terms, it means distracting the brain from constantly brooding on the pain signals it is getting from the body’s periphery. Sometimes the distraction is a cunningly deployed electric shock.
“We were the first centre in the world to pioneer spinal cord stimulation,” says Al-Kaisy. “In pain occasions, overactive nerves send impulses from the periphery to the spinal cord and from there to the brain, which starts to register pain. We try to send small bolts of electricity to the spinal cord by inserting a wire in the epidural area. It’s only one or two volts, so the patient feels just a tingling sensation over where the pain is, instead of feeling the actual pain. After two weeks, we give the patient an internal power battery with a remote control, so he can switch it on whenever he feels pain and carry on with his life. It’s essentially a pacemaker that suppresses the hyperexcitability of nerves by delivering subthreshold stimulation. The patient feels nothing except his pain going down. It’s not invasive – we usually send patients home the same day.”
When Carter, suffering from agonising pain in the groin, had failed to respond to any other treatments, Al-Kaisy tried his new combination of therapies. “We gave him something called a dorsal root ganglion stimulation. It’s like a small junction-box, placed just underneath one of the bones of the spine. It makes the spine hyperexcited, and sends impulses to the spinal cord and the brain. I pioneered a new technique to put a small wire into the ganglion, connected to an external power battery. Over 10 days the intensity of pain went down by 70% – by the patient’s own assessment. He wrote me a very nice email saying I had changed his life, that the pain had just stopped completely, and that he was coming back to normality. He said his job was saved, as was his marriage, and he wanted to go back to playing sport. I told him, ‘Take it easy. You mustn’t start climbing the Himalayas just yet.’” Al-Kaisy beams. “This is a remarkable outcome. You cannot get it from any other therapies.”
The greatest recent breakthrough in assessing pain, according to Professor Irene Tracey, head of the University of Oxford’s Nuffield Department of Clinical Neurosciences, has been the understanding that chronic pain is a thing in its own right. She explains: “We always thought of it as acute pain that just goes on and on – and if chronic pain is just a continuation of acute pain, let’s fix the thing that caused the acute and the chronic should go away. That has spectacularly failed. Now we think of chronic pain as a shift to another place, with different mechanisms, such as changes in genetic expression, chemical release, neurophysiology and wiring. We’ve got all these completely new ways of thinking about chronic pain. That’s the paradigm shift in the pain field.”
Tracey has been called the “Queen of Pain” by some media commentators. She was, until recently, the Nuffield Professor of anaesthetic science and is an expert in neuroimaging techniques that explore the brain’s responses to pain. Despite her nickname, in person she is far from alarming: a bright-eyed, enthusiastic, welcoming and hectically fluent woman of 50, she talks about pain at a personal level. She has no problem defining the “ultimate pain” that scores 10 on the McGill questionnaire: “I’ve been through childbirth three times, and my 10 is a very different 10 from before I had kids. I’ve got a whole new calibration on that scale.” But how does she explain the ultimate pain to people who haven’t experienced childbirth? “I say, ‘Imagine you’ve slammed your hand in a car door – that’s 10.’”
She uses a personal example to explain the way perception and circumstance can alter the way we experience pain, as well as the phenomenon of “hedonic flipping”, which can convert pain from an unpleasant sensation into something you don’t mind. “I did the London Marathon this year. It needs a lot of training and running and your muscles ache, and next day you’re really in pain, but it’s a nice pain. I’m no masochist, but I associate the muscle pain with thoughts like, ‘I did something healthy with my body,’ ‘I’m training,’ and ‘It’s all going well.’”
I ask her why there seems to be a gap between doctors’ and patients’ apprehension of pain. “It’s very hard to understand, because the system goes wrong from the point of injury, along the nerve that’s taken the signal into the spinal cord, which sends signals to the brain, which sends signals back, and it all unravels with terrible consequential changes. So my patient may be saying, ‘I’ve got this excruciating pain here,’ and I’m trying to see where it’s coming from, and there’s a mismatch here because you can’t see any damage or any oozing blood. So we say, ‘Oh come now, you’re obviously exaggerating, it can’t be as bad as that.’ That’s wrong – it’s a cultural bias we grew up with, without realising.”
Recently, she says, there has been a breakthrough in understanding about how the brain is involved in pain. Neuroimaging, she explains, helps to connect the subjective pain with the objective perception of it. “It fills that space between what you can see and what’s being reported. We can plug that gap and explain why the patient is in pain even though you can’t see it on your x-ray or whatever. You’re helping to bring truth and validity to these poor people who are in pain but not believed.”
But you can’t simply “see” pain glowing and throbbing on the screen in front of you. “Brain imaging has taught us about the networks of the brain and how they work,” she says. “It’s not a pain-measuring device. It’s a tool that gives you fantastic insight into the anatomy, the physiology and the neurochemistry of your body and can tell us why you have pain, and where we should go in and try to fix it.”
Some of the ways in, she says, are remarkably direct and mechanical – like Al-Kaisy’s spinal cord stimulation wire. “There are now devices you can attach to your head and allow you to manipulate bits of the brain. You can wear them like bathing caps. They’re portable, ethically allowed brain-simulation devices. They’re easy for patients to use and evidence is coming, in clinical trials, that they are good for strokes and rehabilitation. There’s a parallel with the games industry, where they’re making devices you can put on your head so kids can use thought to move balls around. The games industry is, for fun, driving this idea that when you use your brain, you generate electrical activities. They’re developing the technology really fast, and we can use it in medical applications.”
Illustration: Matthew Richardson
Pain has become a huge area of medical research in the US, for a simple reason. Chronic pain affects over 100 million Americans and costs the country more than half a trillion dollars a year in lost working hours, which is why it has become a magnet for funding by big business and government.
Researchers at the Human Pain Research Laboratory at Stanford University, California, are working to gain a better understanding of individual responses to pain so that treatments can be more targeted. The laboratory has several study initiatives on the go – into migraine, fibromyalgia, facial pain and other conditions – but its largest is into back pain. It has been endowed with a $ 10m grant from the National Institutes of Health to study non-drug alternative treatments for lower back pain. The specific treatments are mindfulness, acupuncture, cognitive behavioural therapy and real-time neural feedback.
They plan to inspect the pain tolerance of 400 people over five years of study, ranging from pain-free volunteers to the most wretched chronic sufferers who have been to other specialists but found no relief. The idea is to find people’s mid-range tolerance (they’re asked to rate their pain while they are experiencing it), to establish a usable baseline. They then are given the non-invasive treatments – such as mindfulness and acupuncture – and are subjected afterwards to the same pain stimuli, to see how their pain tolerance has changed from their baseline reading. MRI scanning is used on the patients in both laboratory sessions, so that clinicians can see and draw inferences from the visible differences in blood flow to different parts of the brain.
A remarkable feature of the assessment process is that patients are also given scores for psychological states: a scale measures their level of depression, anxiety, anger, physical functioning, pain behaviour and how much pain interferes with their lives. This should allow physicians to use the information to target specific treatments. All these findings are stored in an “informatics platform” called Choir, which stands for the Collaborative Health Outcomes Information Registry. It has files on 15,000 patients, 54,000 unique clinic visits and 40,000 follow-up meetings.
The big chief at the Human Pain Research Laboratory is Dr Sean Mackey, Redlich professor of anaesthesiology, perioperative and pain medicine, neurosciences and neurology at Stanford. His background is in bioengineering, and under his governance the Stanford Pain Management Center has twice been designated a centre of excellence by the American Pain Society. A tall, genial, easy-going man, he is sometimes approached by legal firms who want him to appear in court to state definitively whether their client is or is not in chronic pain (and therefore justified in claiming absentee benefit). His response is surprising.
“In 2008, I was asked by a law firm to speak in an industrial injury case in Arizona. This poor guy got hot burning asphalt sprayed on his arm at work; he had a claim of burning neuropathic pain. The plaintiff’s side brought in a cognitive scientist, who scanned his brain and said there was conclusive evidence that he had chronic pain. The defence asked me to comment, and I said, ‘That’s hogwash, we cannot use this technology for that purpose.’
“Shortly afterwards, I gave a talk on pain, neuroimaging and the law, explaining why you can’t do this – because there’s too much individual variability in pain, and the technology isn’t sensor-specific enough. But I concluded by saying, ‘If you were to do this, you’d use modern machine-learning approaches, like those used for satellite reconnaissance to determine whether a satellite is seeing a tank or a civilian truck.’ Some of my students said, ‘Can you give us some money to try this?’ I said, ‘Yes, but it can’t be done.’ But they designed the experiment – and discovered that, using brain imagery, they could predict with 80% accuracy whether someone was feeling heat pain or not.”
Mackey finally published a paper about the experiment. So did his findings influence any court decisions? “No. I get asked by attorneys, and I always say, ‘There is no place for this in the courtroom in 2016 and there won’t be in 2020. People want to push us into saying this is an objective biomarker for detecting that someone’s in pain. But the research is in carefully controlled laboratory conditions. You cannot generalise about the population as a whole. I told the attorneys, ‘This is too much of a leap.’ I don’t think there’s a lot of clinical utility in having a pain-o-meter in a court or in most clinical situations.”
Mackey explains the latest thinking about what pain actually is. “Now we understand that pain is a balance between ascending information coming from our bodies and descending inhibitory systems from our brains. We call the ascending information “nociception” – from the Latin nocere, to harm or hurt – meaning the response of the sensory nervous system to potentially harmful stimuli coming from our periphery, sending signals to the spinal cord and hitting the brain with the perception of pain. The descending systems are inhibitory, or filtering, neurons, which exist to filter out information that’s not important, to “turn down” the ascending signals of hurt. The main purpose of pain is to be the great motivator, to tell you to pay attention, to focus. When the pain lab was started, we had no way of addressing these two dynamic systems, and now we can.”
Mackey is immensely proud of his massive CHOIR database – which records people’s pain tolerance levels and how they are affected by treatment – and has made it freely available to other pain clinics as a “community source platform”, collaborating with academic medical centres nationwide “so that a rising tide elevates all boats”. But he is also humble enough to admit that science cannot tell us which are the sites of the body’s worst pains.
“Back pain is the most reported pain at 28%, but I know there’s a higher density of nerve fibres in the hands, face, genitals and feet than in other areas,” Mackey says, “and there are conditions where the sufferer has committed suicide to get away from the pain. Things like post-herpetic neuralgia, that burning nerve pain that occurs after an outbreak of shingles and is horrific; another is cluster headaches – some patients have thought about taking a drill to their heads to make it stop.”
Like Irene Tracey, Mackey is enthusiastic about the rise of transcranial magnetic stimulation (“Imagine hooking a nine-volt battery across your scalp”) but, when asked about his particular successes, he talks about simple solutions. “Early on in my career, I used to be very focused on the peripheral, the apparent site of the pain. I was doing interventions, and some people would get better but a lot wouldn’t. So I started listening to their fears and anxieties and working on those, and became very brain-focused. I noticed that if you have a nerve trapped in your knee, your whole leg could be on fire, but if you apply a local anaesthetic there, it could abolish it.
“This young woman came to me with a terrible burning sensation in her hand. It was always swollen; she couldn’t stand anyone touching it because it felt like a blowtorch.” Mackey noticed that she had a post-operative scar from prior surgery for carpal-tunnel syndrome. Speculating that this was at the root of her problem, he injected botulinum toxin, a muscle relaxant, at the site of the scar. “A week later, she came up and gave me this huge hug and said, ‘I was able to pick up my child for the first time in two years. I haven’t been able to since she was born.’ All the swelling was gone. It taught me that it’s not all about the body part, and not all about the brain. It’s about both.”
Main illustration by Matthew Richardson
This is an edited version of an article that appears on Mosaic. It is republished here under a Creative Commons licence.
• Follow the Long Read on Twitter at @gdnlongread, or sign up to the long read weekly email here.
A controversial new rule requiring Texas abortion clinics to bury or cremate fetal tissue won’t go into effect Monday as planned, after a judge temporarily blocked the rule Thursday.
But abortion advocates warn the lawsuit has teed up a battle that could open up a brand-new front in the abortion wars.
“This is Texas once again trying to decrease women’s access to abortion care,” said Vicki Saporta, the president of the National Abortion Federation, a member organization for independent abortion clinics. “And Texas, in recent memory, has been leading the way on anti-abortion restrictions.” She predicted that a wave of states with anti-abortion legislatures would soon follow suit. “They don’t do anything one at a time.”
The rules, which Texas’ health department quietly introduced this summer, require healthcare facilities to dispose of fetal remains from abortions and miscarriages through burial or cremation, with the only exceptions for miscarriages and abortions that take place in the home.
Whole Woman’s Health, a group of abortion clinics with several locations in Texas, filed suit, claiming the logistics of following the new rules could force clinics to close or drive up the cost of the procedure.
“It imposes a funeral ritual on women,” the suit claims. “It also forces healthcare providers to work with an extremely limited number of third-party vendors for burial or scattering ashes, threatening abortion clinics’ provision of care and their long-term ability to remain open.”
The rule was slated to take effect on 19 December. But on Thursday, a federal judge temporarily blocked the rule until a hearing on the Whole Woman’s Health lawsuit could be held in January.
Texas is not the first state to pass requirements for how abortion clinics deal with fetal remains. But because the state often sets the agenda for others seeking to curtail abortion rights, its court fight could signal that a wave of similar laws is coming.
Louisiana passed a similar measure which has been blocked pending the outcome of a lawsuit. And in March of this year, Indiana governor Mike Pence, the vice-president elect, signed a bill requiring individual women to seek funerary services for fetal tissue – regardless of whether they have had a miscarriage or an abortion. A federal judge blocked that law from taking effect.
Clinics typically dispose of the contents of a pregnancy through medical waste companies. The new rules, say Texas abortion providers, would force clinics to do business with funeral homes and pass on steep costs to abortion patients. According to one estimate, the rules would double the cost of the procedure.
“For women who are already struggling to pay, it could be a barrier and a burden that they can’t overcome,” said Saporta.
Saporta also pointed out that funeral homes would have the power to prevent abortion clinics from offering the procedure by refusing to handle their fetal tissue.
Anti-abortion protesters have been known to harass companies that do business with clinics as a way to interrupt the clinics’ operations. As a consequence, many companies are reluctant to work with abortion clinics.
The recent wave of proposals to regulate clinics’ medical waste may have been touched off by Americans United for Life, an anti-abortion group that provides lawmakers around the country with legal advice and model legislation.
In 2015, it introduced a new model bill called the Unborn Infants Protection Act, requiring all fetal tissue from abortions to be buried or cremated. Under the bill, either the woman must make the arrangements herself, or she or an “authorized representative” must decide which method the clinics use. It prohibits the donation of the tissue to medical research – an endeavor that has produced vaccines for deadly viruses such as polio.
“The momentum for creating a culture that respects life in the law increases each year,” Charmaine Yoest, the group’s president, said in a statement accompanying the draft legislation. The bill, she said, “ensures that mothers are given the opportunity to ensure that their deceased infants receive respectful treatment, and that the bodies of aborted infants are not exploited”.
AUL circulated the draft bill to state legislators late last year. At the time, many anti-abortion lawmakers were seeking to build on the outrage over a series of sting videos that falsely accused Planned Parenthood officials of illegally selling fetal tissue from abortions for profit.
One state where legislators seem to have embraced the model is Ohio. Following on the heels of the sting videos, the state’s attorney general accused Planned Parenthood of disposing of fetal remains in a general landfill – a charge Planned Parenthood denied.
Lawmakers responded by introducing a bill that
requires women who have had an abortion or a miscarriage to decide whether the clinic or hospital uses cremation or burial to dispose of the remains. “The idea of respectfully treating the remains of an infant who has been aborted, I think, is critical,” said one of the bill’s sponsors. So far, it has failed to pass the legislature.
Bills such as these may be an attempt to exploit uneasy feelings about fetal tissue. Even Planned Parenthood, in the wake of the sting videos, acknowledged that the topic was an emotional one. While denying that Planned Parenthood broke the law, Cecile Richards, the group’s president, apologized for the clinical tone used by Planned Parenthood officials when discussing fetal remains.
Saporta acknowledged that some women might find it helpful to have the remains buried or cremated. But forcing a woman to deal with funerary options, she said, is cruel. “This doesn’t take into account women’s preferences, their wishes, their religious beliefs – it tramples on all of that,” she said.
Speaking to the Guardian earlier this year, other skeptics of the model legislation warned of its potential adverse impact.
“They intend to demean and shame a woman needing abortion,” said Kelly Baden, the policy director of the the Center for Reproductive Rights.
Elizabeth Nash, who tracks state restrictions on abortion for the Guttmacher Institute, a pro-abortion rights thinktank, said: “The language being used is all about trying to elevate the status of the fetus while questioning the women’s decision-making. It seems to me that the purpose of this legislation is to make accessing services as unpleasant as possible.”
What stands out to critics about Texas’ rule is its timing. The Texas health commission proposed the rule on 1 July, just days after the US supreme court struck down a health restriction that would have shuttered half of the state’s abortion clinics.
“They didn’t like the fact that they lost, and now they’re looking for new ways to limit women’s access to abortion care,” said Saporta.
In a fundraising email, Greg Abbott, Texas’ Republican governor, said the rules would “help make Texas the strongest pro-life state in the nation”.
Texas says its critics are blowing the impact of the rules out of proportion. The annual cost to each clinic probably won’t exceed $ 500, the state claims, because it will be offset by a reduction in medical waste disposal costs.
But a spokesperson for the Texas Funeral Directors Association said each burial could cost clinics and hospitals more than $ 1,000. (The way the rule is written, some believe that even remains that are cremated would have to then be interred.) He also worried that the rules could prove burdensome to funeral homes, which usually offer their services for free to parents who are grieving for a miscarriage and want to hold a funeral. If every miscarriage in the state were subject to these rules, he said, that practice could become unsustainable.
Saporta said she was confident that Whole Woman’s Health would prevail in court. The June supreme court ruling that struck down several Texas restrictions held that states regulating abortion for health reasons had to show evidence that its regulations were medically necessary.
“There’s no health reason whatsoever for these requirements,” she said. “All the state health department wants to do is increase costs for women and make abortion care less accessible. It’s not even disguised as anything else.
“I think the courts will strike these laws down,” she continued. “But that doesn’t preclude other states from passing the same legislation, and wasting a lot of money and effort.”
Waistlines of MPs are to come beneath near scrutiny as a peer and former surgeon asks them to carry out easy checks to see if they are obese.
Every single MP and Lord will get a letter asking them to measure their waist and height beneath ideas by Lord McColl of Dulwich, who is also a surgeon with 50 many years experience in the NHS, in a bid to fight the weight problems crisis.
If the waist measurement is more than twice their height, they have an obesity dilemma which will need to have to be tackled, he will say in his letter. MPs willbe invited to acquire medical advice.
Earl Howe, the Health Minister, stated parliamentarians should welcome “any measure which encourages us to boost our diet and minimize bodily inactivity.
Lord McColl mentioned he hoped the members of the two homes would report their measurements back so that he could have some notion how unhealthy parliamentarians are.
He mentioned that there have been rather too many portly bellies witnessed about the halls of Westminster and that measuring their waistline and towards their height was a basic way to examine no matter whether they were a healthier size.
He informed the Every day Telegraph: “At the finish of the day you can not be obese unless of course you are eating also considerably – and it appears undesirable if MPs are telling people what to do and are obese themselves.
“It is an important situation and we notice really a bit of weight problems in the ranks and, they are eating too considerably of the gross nationwide product.”
He stated that there had been rather too a lot of portly bellies observed all around the halls of Westminster and that measuring thier waistline and towards their height was a basic way to check no matter whether they were a healthier dimension.
“At the end of the day you are not able to be obese unless of course you are consuming too significantly – and it seems to be negative if MPs are telling men and women what to do and are obese themselves.
“It is an essential issue and we notice fairly a bit of weight problems in the ranks and, they are eating too a lot of the gross nationwide merchandise. .
“It is killing hundreds of thousands of people, its costing billions and the price is cost-free – consume less and consume more healthily. I hereby empower folks – all they have to do is place significantly less meals in their mouths.”
This week the Nationwide Weight problems Forum warned that Britain’s obesity crisis could be worse that feared with a report suggesting that predictions that half the British population will be obese by 2050 ”underestimate” the scale of the crisis.
In the same debate Lord Tebbit blamed people’s “personal stupid actions” in eating “rubbish” food items for the rise in weight problems. The former Conservative Cabinet minister lashed out at those who “stuff themselves silly” at question time in the Lords.
He advised peers: “Individuals ought to know that if they stuff themselves silly with high calorie rubbish foods they will get body fat.”
“It is their accountability and all the forums and other nonsenses are just making an attempt to divorce men and women from the consequences of their very own stupid actions.”
