29 October 2013

Medical Complaints

This story was in the news yesterday about how a "complaints revolution" is needed in the NHS. But a few years ago I came across a much bigger problem with making complaints about negligent medical care. The problem wasn't with the NHS; the problem was with our stupid legal system. I'd have come across the same problem in trying to get justice if a negligent private doctor had been responsible for my mother's death.

I've never written online before about what actually happened to my mum. I've mentioned that she had died without going into the details of what happened. I've told friends off-the-record in real life, but I've never published it on the internet before because that publication could have affected any legal proceedings. But now justice is well and truly off the table, it's something I can write about.

How she died

Black and white photo of my mum in her wheelchair outside what was our home at the time.

The story of how my mum died actually begins 10 years and one month before her death. My mum's youngest sister was married to a bloke from mainland Europe and in November 1998 my aunt and her husband flew home from visiting his family. As soon as they landed in this country my aunt started complaining of chest pain. My aunt was overweight, a lifelong smoker and had just flown. Despite these risk factors, when she saw her GP the next day; he diagnosed her with indigestion and gave her Gaviscon.

Five days later she was feeling really ill so went to get an early night. Her husband made her a cup of cocoa and took it up to her. By the time the cocoa was made and he'd carried it up the stairs; she was dead. My 85-year-old nan (who my aunt and uncle lived with) ran barefoot across the street to fetch a neighbour nurse. Said neighbour performed CPR on my aunt until the emergency services showed up, but she was gone. Unsurprisingly she'd had a massive, and instantly fatal, heart attack.

If my aunt's GP had sent her straight to A&E when she presented with chest pains 5 days earlier, it's possible she'd still be alive 15 years later. Of course she just as easily might not be; but it's possible that she would.

The reason the story of my mum's sister's death is relevant is because 10 years later, my mum died the same way thanks to the same response from a GP. Not the same GP, it's important to note: It seems the response is a standard one wherever you see a doctor.

colour picture of my mum sitting on a wall wearing a flowing colourful dress.

My mum died in December 2008. Her chest pains began around two years earlier, so that would've been 2006. Just as her sister did 8 years before, my mum went to see her GP about her chest pain and was diagnosed with indigestion. Unlike her sister, my mum was prescribed omeprazole - rather than Gaviscon - for the indigestion.

My aunt died within 5 days of the indigestion diagnosis. My mum lasted for 2 years and repeatedly visited her GP during that time. She struggled to push her wheelchair, became unable to lay down flat, and clutched her chest at the slightest movement. You have to remember that this was a woman with osteogenesis imperfecta; she had a fucking high pain tolerance. When she was in hospital as a child with broken limbs, she would still be changing nappies of babies on the children's ward and showing some love that cold-hearted nurses wouldn't. (Parents weren't allowed to visit: Hospital rules.) My mum was not someone who was easily stopped by pain, so for her to stop and clutch her chest while transferring from wheelchair to armchair; she must have been in agony.

For two years she kept going back to her GP, and her GP did nothing. No referral to a cardiologist, no cardiac tests, nothing.

On the 4th of December 2008, she went to go to bed; but couldn't get out of her armchair and into her wheelchair. She couldn't breathe. She admitted defeat and called 999. Once in hospital she was assigned a consultant cardiologist who told her, in no uncertain terms, that "you should have been referred to me two years ago."

Apparently, according to her test results, her heart attack had been massive and she was lucky to be alive. It didn't last. On December 13th at around 10pm her heart gave up and stopped completely.

A few months after mum died, the British Heart Foundation ran an ad campaign on buses with wording to the effect of "chest pain is your body's way of telling you to call 999." Such a shame they don't teach that in medical school. My mum and her sister might still be around if GPs were smart enough to know that chest pains indicate a need to rule out heart problems. Yes, you can say that my mum and her sister should've skipped the GP middle-man and gone straight to A&E themselves. But these were women with no academic qualifications who placed their faith in their GPs, expecting them to be educated enough to treat them.

The legal snag

My mum in her twenties holding up a pint of beer.

While mum was in hospital we had a conversation about the need for mum to sue her GP to make sure he didn't treat anyone else so badly. I remember pointing out that she was lucky to be alive and that he could have killed her. Turns out he did kill her: By the time she was hospitalised, she was beyond saving.

Shortly after her death I contacted a lawyer. Obviously I wanted justice for my mum; but what I wanted most was to protect her GP's other patients; to make sure he couldn't kill anyone else with his indifference.

I was told that I couldn't sue because I'm not legally considered my mother's closest living relative: My father is. I once lived inside my mum for 9 months. That's really fucking close. But no; the only person who could sue my mum's GP was my dad.

My dad will not do anything that involves moving from in front of the TV. Anything. For three years I kept begging him to be reasonable, to think about protecting other patients. To try to make him see that if that GP kills anyone else; their blood is on his hands because he could have stopped it.

He wouldn't. He cares more about the patients on Doctors than the patients registered at my mother's doctor's surgery.

You can only instigate a case within 3 years, less one day, of realising the doctor was wrong. So the deadline for initiating legal action was Dec 3rd 2011. That's long gone, so like I said at the start: Any potential justice for my mum is long off the table.

How fucked up does a legal system have to be when a dead woman's daughter is considered too distant a relative to be able to sue the doctor whose negligence resulted in the woman's death? Yes, the NHS complaints procedure needs work and the news yesterday was full of examples as to why. It can be scary complaining, especially if you're complaining about doctors whom your life depends on. But beneath the NHS complaints framework we need a legal system that protects NHS and private patients alike. Sometimes issues are so severe (like fatal negligence) that a surgery complaint form isn't enough and you need to take legal action. We need to fix NHS complaint systems, but we need to fix our ludicrous legal system too.

26 September 2013

The #BigBangTheory Season 6: My thoughts

Seeing as season 6 finished in the UK about a month ago, and season 7 starts in the US tonight, I can't imagine there's anyone that gives a crap about The Big Bang Theory that hasn't seen the sixth series in its entirety. But just in case; I'll put the rest of this post beneath a jump.

16 August 2013

♫...It all keeps adding up, I think I'm cracking up...♫

I hate talking about my mental health. I mention the fact that I am depressed when I'm listing all my medical conditions or whatever. But I only talk about it in that detached, factual way. I don't usually go into the details of the thoughts in my head. I've learned from experience that nothing loses you friends faster than freaking them out by telling them that you don't know what the point of you remaining alive is.

At the weekend Giles Fraser wrote a Guardian article about how we shouldn't medicate having "a shit job or a shit home life". It's all stuff I've heard before when I've answered the question "why do you take anti-depressants?" with "because my life is terrible."

Would these people prefer it if I were dead rather than pathologising normal life events?

I've had depression on and off since I was about 8. And it was something that happened 5 years ago that really, truly, made me understand the difference between sadness and depression.

When my mum died I cried for days. I was grief-stricken, heart-broken, and sadder than I've ever been in my whole life. But, interestingly, I didn't feel depressed at all.

Although I've used the Black Dog metaphor once before because it fit what I was feeling at the time, I usually tend to think of depression as an unending night.

At night you can't go to the bank, because the bank is closed. At night you can't return phone calls because businesses are closed. There's no point in opening mail in the middle of the night because you can't make any phone calls the letter might require you to make until morning. You can't do housework in the middle of the night because the hoover or washing machine will wake your neighbours. In the middle of the night you can't phone a friend and say "hey, fancy meeting up for a cuppa?" Because A) They'll have work tomorrow. And B) Unless you want petrol station dispenser tea served through the night window: There's nowhere to go for a cuppa. At night all there really is to do is stare at the ceiling.

Depression to me feels like a night that never ends. Except the sun still rises and sets, the never ending darkness is inside my head. I can't go to the bank, or make a phone call, or open my mail, or do the housework, or ask a friend out for a cuppa because I feel too dark for such things. I just sit and stare at the wall.

When my mum died I cried and cried. But the sun still rose and set, even in my head. I was able to ring around funeral directors. I was able to phone the Peugeot garage repeatedly to harass them into fixing my fucking car because I really needed it. I was able to go to the bank to deal with mum's money. I was able to phone friends who'd also lost a parent because I wanted to talk to people who'd gone through what I was going through.

I was beyond sad, but I never felt that clinical depression darkness that I'm so familiar with. And I think the main reason for that was the amount of support I got. I spent most of the month following mum's death at my dad's house. There were always family members around helping out with stuff. When I came home for things like hospital appointments or to pick up my eventually repaired car there were always friends at my flat who'd come and bring food. I swear I didn't make myself a cup of tea for about a fortnight because there was always someone around to hand me a freshly-brewed cuppa.

That's such a sharp contrast to my normal life. Ordinarily the only human beings I ever speak to are the receptionists at my GP's surgery, my GP, the local pharmacist, and the doctors, nurses and receptionists at any of the 5 hospitals where I'm currently a registered patient. I'm such a frequent visitor to the gastroenterology clinic at my local hospital, and the rhinology clinic at the Royal National Throat, Nose and Ear hospital that I don't need to give my name at reception any more; they know who I am. I have no local friends to lean on for real life support, the only socialising I ever do is on social networks like Twitter where I engage with people who are scattered across the whole planet.

I can't be sure that such an unusual level of social support was the reason I didn't become clinically depressed in the immediate aftermath of my mum's death, but it certainly seems like the most obvious reason. In fact, it's the only thing I can think of.

But the things that do make me clinically depressed are exactly the kinds of things that Fraser believes people shouldn't receive medication for. I have a shit home life, no partner, and no job at all; never mind a shit one.

I don't take anti-depressants because they're forced upon me by pharmaceutical companies trying to enforce happiness. I went to my GP out of desperation because I couldn't carry on living feeling as awful as I did.

Yes, a great many of the things that make me feel low are down to social pressures. I don't feel a social pressure to have a compulsory smile on my face but we do live in a society in which people are pressured to have a job. Which is a huge problem for someone like me who is too ill to work. LBC (which is basically just a phone-in version of the Daily Mail) on in the Doctor's waiting room reminds you of the sheer number of people who think you're a scrounger and resent paying their taxes to keep you alive. You can't even go to the emergency dentist to get a broken filling fixed without being made to feel small when she asks you "what do you do for a living?" And this is just the social pressure angle, other issues with being too ill to work include: Never having any money, not having career satisfaction, and, of course, being ill all the time.

The fact that I live in a flat that's not accessible enough for my impaired mobility depresses me. Moving depresses me even more. In fact, it was living in the property before this one - the one that was a rodent infested hole the size of a cupboard - that prompted me to seek pharmacological help because I couldn't bear my living situation any more.

My absence of family depresses me. I have no partner, no children, no siblings and no mother. When my dad dies I will be absolutely and truly alone in this world. And don't bother suggesting that I might have found a partner by then: We all know that's never going to happen.

Being ill depresses me. The mobility impairment I've had all my life doesn't depress me in itself, but I can't count the number of times I've been reduced to darkness by people treating me cruelly because they're disablist bastards. Some of my physical health problems cause me to be depressed directly. There's a phase after a migraine called "postdrome" which can cause depression. You'd think I'd be happy that my pain had cleared up. But instead, after a migraine, all I can think about is how much I'd be better off dead. I try to remind myself that it's just the postdrome and I'll be fine in the morning; but it's hard to keep telling yourself that when the rest of your life is a fucking disaster.

I've failed at doing everything I loved. I failed at swimming. I failed at comedy. I tried doing an awesome Masters degree but never got to finish it because of my health. There is literally nothing in my life I can look back upon that I've succeeded at.

According to Giles Fraser, none of this list of misery warrants medication because it's normal to be sad when your life is terrible. And pathologising this normal response is just making Big Pharma rich. It doesn't matter that without drugs to boost my mood that I might not last long. Even just looking at this list of things in black and white makes me wonder what the point is of carrying on.

There are plenty of physical conditions that are a perfectly normal response to life's ups and downs that we medicate. Catching a cold is a perfectly normal response to sitting next to someone with a cold on the bus. We medicate colds with paracetamol and decongestants. Breaking your ankle is a perfectly normal response to slipping on an icy pavement. Should we not medicate that with painkillers? Or are the painkillers just pathologising a normal response to winter?

If it's OK to medicate physical responses to life's normalities that make you ill or cause you pain, why should mental illness or pain of social origin be treated any differently?

30 July 2013

"Ableism"? Stop insulting me.

Historically it's been the case that the single word to describe disability-based discrimination in British English has been "disablism". North Americans have always preferred "ableism", but you didn't see it used by Brits that often. Sadly the word "ableism" is creeping further and further into British English usage. I've seen it used repeatedly by journalists and popular bloggers which validates its use; and every time I see it I feel hurt.

For much of the rest of this post to make sense you really need to go and read an article I wrote for xojane.com last November. I'll just finish this drink while you're reading that.

Back with me? OK, excellent. Let's crack on to why I find the word "ableism" insulting.

As you will have read, there are are two ways of considering disability. There's the medical/individual model in which a person with an impairment is seen as lacking in ability, and there's the social model in which a person with an impairment is considered disabled by social barriers.

The problem with the word "ableism" is that it's predicated on the medical model. The "blame it on their brain/body" individualised perspective of disability should be consigned to the history books and instead we need to focus on dealing with disabling barriers - from architectural to financial - that make life difficult/impossible for disabled people.

The word "sexism" refers to discrimination on the grounds of sex. It's discrimination that can happen to anyone of any sex whether they're male, female, intersexed, or have some other identity. Everyone has a sex and anyone can be discriminated against because of it. Though it's far rarer for men to be victims of sexism than anyone else. One might argue if a man can truly be discriminated against in a patriarchal society, but it's hypothetically possible.

The word "racism" refers to discrimination on the grounds of race. Everyone has a race and anyone can be discriminated against because of it. Again, one might argue that it's not truly possible for a white person to be a victim of racism in a society geared to the benefit of white people. But it's hypothetically, and legally, possible. There have been legal precedents set in the UK by white people bringing discrimination claims under Race Relations Act.

The idea behind the word "ableism" is that everybody has an ability level and anyone can be discriminated against because of their level of ability. In other words: If you're a person with an impairment on the receiving end of "ableism" then you have to be lacking in ability.

Imagine you and I are going to see a film together. We try to catch a bus to the cinema and the driver refuses to get the ramp out because he's an arsehole. After he shuts the door in our faces and drives off you yell at him "ableist bastard!" What you're doing there is that you're making the issue about my ability levels, rather than society's disabling barriers.

I am not intrinsically unable to travel by bus. Buses are a product of our society so making them difficult to access is a socially-created barrier. Buses could have been designed from scratch to be fully inclusive; but they weren't. It's only been in the last 15 to 20 years that we've seen any kind of wheelchair access on buses at all in the UK. As they stand now they only have one wheelchair space per bus which is still a hugely disabling design flaw for a couple who are both wheelchair users, or a parent and child who are both wheelchair users.

Then there's the fact that - with the current models of bus design - the onus is on the bus driver to not be a discriminatory dick. He has to pull up close to the kerb for the telescopic ramp to reach. He has to be willing to do his job and press the damn button to extend the telescopic ramp onto the pavement. He also has to be willing to do his job and ask any parents with buggies in the wheelchair space to fold their buggy: It's not called the "wheelchair space" for nothing. A lot of bus drivers just can't be bothered to not disable me and I'm refused entry to about 1 in every 5 buses I try to board. Which, I'll admit, is an improvement on a decade ago where the refusal rate was at least 50%.

Given that all these barriers are socially constructed; surely you can see why I'd be peeved at you shouting "ableist bastard" at the bus driver; which brings my ability levels into the equation rather than it being about his behaviour?

So I, like many other disabled Brits, use the words "disablism" and "disablist" instead. In the bus scenario above; if you shouted "disablist bastard" you would be correctly referring to him disabling me. And, of course, the fact that the design of the bus disables me too: If the bus was fully accessible without the driver having to do a thing my life would be much more simple.

In anticipation of the comments saying "but if 'ableism' puts the blame on your lack of ability, then surely you're saying that the sex and race of victims of sexism and racism is part of the problem too?"

Absolutely not. If the bus driver refuses to let me on because I am a woman then I am a victim of sexism. My sex is a matter of fact. If the bus driver refuses to let me on because I am white; then I am a victim of racism. My race is a matter of fact.

My lack of ability is not a matter of fact. As I have explained (or tried to) I am only perceived as lacking in ability by people who hold a medical/individual perspective of disability. I believe that I am disabled by social barriers (like badly designed buses, and bus drivers being dicks), not that I am intrinsically lacking ability.

Not all disablist discrimination falls under the realm of being a disabling barrier. I'm also sometimes subjected to disablist abuse from people who view my existence as a disabled person abhorrent. I get online commenters telling me that I should've been killed at birth to save taxpayers' money. That doesn't prevent me from getting on a bus or install steps at the entrance to the building I live in. But it's abuse motivated by the fact that I am disabled; therefore it is disablist abuse.

As I said in the xoJane article; it's up to people how they choose to identify. If they choose to consider themselves as a person with a disability rather than a person disabled by society; that's their prerogative. Likewise; if people choose to view themselves as lacking in ability therefore as victims of ableism then that is their choice.

However I'm an avid believer in the social model of disability. I hope I've shown how "ableism" is predicated on the medical model. (I have a thumping migraine. For all I can see to read it back off this white screen I might have just written "blah bla blah blah blah bla" over and over again.) Therefore; if you and I ever try to catch a bus together and the driver slams the door in our faces I would request that you describe me as having been on the receiving end of "disablism" not "ableism". Much like I would always ask you to describe me as a "disabled person" and never a "person with a disability."

Thank you.

09 April 2013

The Difference Between Relief and Joy #thatcher

Lots of people are celebrating the death of Margaret Thatcher which is pretty crass. I've lost my mum and it doesn't matter how grown-up and independent you are when you lose your mum; it hurts. I can't imagine how it feels to be Thatcher's children knowing that people are throwing street parties in celebration of your loss.

But I can understand why there are some people feeling very relieved right now.

Someone ruined my childhood. I'm nearly 34, haven't seen her for 23 years, but I still have nightmares about her. Co-incidentally the last time I saw her was the same year Thatcher left office.

For 23 years she hasn't been able to hurt me. But she still holds power over me.

When the Panorama about Winterbourne View aired my Twitter timeline filled with people saying "I'm going to go to sleep tonight hearing those screams." You know whose screams I heard that night? My own. Once again I was 6 years old and crying and begging for the torment to stop.

Like I say: I haven't seen or heard from her in 23 years. I have no idea if she's alive or not. Once or twice I've tried Googling her the morning after the nightmare before; but haven't been able to find that out.

If I were to stumble across an obituary for her I wouldn't celebrate the fact that she's dead. I wouldn't celebrate the grief of her family: Her family did nothing to hurt me. But I would feel a rush of relief and safety, even though she hasn't been in a position to cause me harm since 1990. I obviously can't be sure of this; but I strongly suspect that the frequency of nightmares about her will lessen dramatically.

I didn't really understand the harm Thatcher caused during her years in office: She became PM 2 weeks before I was born, and I was 11 when she left office. On both sides of my family I come from very working class backgrounds. I knew that Thatcher was bad because I heard it so many times from the people around me; but I didn't understand why.

Now I'm old enough to understand the number of lives Thatcher ruined; and how she ruined them. I understand how her policies continue to ruin lives: Just look at the number of homeless people because she sold council housing and failed to build new properties to replace them. I understand the anger of the survivors of Hillsborough and the anger of the relatives of the deceased.

Thatcher has been out of office since October 1990: Three months after I last saw the woman who made the 80s hell for me. Since 1990 Thatcher hasn't had the power to continue to ruin those peoples' lives.

But I can also understand the psychological harm she caused to her victims. And I can understand why her victims might feel relieved that the woman who caused them so much pain can no longer do so. Though out of office, 87, extremely frail and in a position to hurt nobody; the psychological bond of the damage she caused hung over her victims' heads.

Her victims will never be entirely free from the pain she caused them, but I can understand why that pain has lessened slightly this week. A few of the strings holding that history over her victims heads have been broken.

Everyone who suffered because of her actions has a right to feel relief this week. But no-one has the right to celebrate that a family is in mourning. To do so makes you no better than her when she praised people responsible for mass killings. And given that she caused so much pain; do you really want to stoop to her level? Really?

Don't Hate, Donate is a brilliant idea. Instead of sinking to Thatcher's level and celebrating death; why not donate to a cause that supports her victims?

04 April 2013

♫...And I shouldn't be here, without permission. I shouldn't be here...♫

"I wish you'd never been born."

I remember the Sunday morning a couple of years ago when a well-known pro-eugenics tweeter was banging on about how babies with genetic conditions shouldn't be born. Despite claiming he was not disablist towards disabled people once they'd done the getting-into-the-world thing, all I could see in those tweets was that he wished I'd never been born because I have a genetic condition. He might have blocked me on Twitter so he can't see me; but I still see him RTed into my timeline frequently (something he said is actually 4th from the top in my timeline as I type). I'm constantly reminded that someone that thinks the world would be a better place without me in it is so well liked among the people I respect enough to follow on Twitter.

I remember all the times I've read that "parents on benefits shouldn't have kids. They shouldn't have kids other people will have to pay for." That includes my parents. So these people are saying that I should never have been born because my dad was forced out of work and onto benefits by impairment not long before I came along (my mum became a housewife when she married my dad because that's what women did in the 70s). I haven't just read it in the right-wing press. I've heard it from people I know. I've even heard it from other disabled people.

They may not have directly used the words "Lisa Egan should not be here," but it was what I inferred from their statements.

I remember the times my father said it to me when I was growing up. He was, and still is, someone that demands to be the centre of attention at all times. When I was a child my mum prioritised me over him and he resented the little brat getting more of his wife's attention that he did.

It's a powerful statement that haunts you; knowing that people think you shouldn't be here.

I remember a very long time ago seeing a mother on the news with her young child saying that if she'd known her daughter was going to have Spina Bifida she'd have had a termination. That child knows that not only is she unwanted, but she's so unwanted that her mother desired to tell the country about it. Her main passion was dancing to pop music; and at her age (IIRC she was about 4) that should have been all she had to worry about. She shouldn't have had to have heard from the people closest to her that they'd prefer her not to be around.

This week there have been 11 living children hearing all about how they shouldn't have been born. In the unlikely event that there is an afterlife where you look down on the world you left behind; there are a further 6 children hearing the same words.

The press is full of stories about how Mick Philpott's children were only born to milk the welfare state. Right wing commentators are queueing up to appear on the news to talk about how families shouldn't have so many children. There are, of course, plenty of people claiming that people living on benefits shouldn't be having children at all.

The most hurtful thing has got to be that these 17 children have been singled out by someone at the heart of government, the Chancellor, as being "a lifestyle" that needs to be "handled". Not human beings deserving of respect. Not people that have lost siblings. Not lives that have been cut short. But a problem that needs to be "handled" by government.

When I've read in the press that parents on benefits shouldn't have kids I knew they weren't talking about me directly, they were talking non-specifically about a group of people I happen to belong to. The same when I read tweets about how babies with genetic conditions shouldn't be born. But this week, all week, there have been 11 children hearing very loudly and clearly every time they turn on their TV that they - those children whose father is Mick Philpott - should not have been born.

I can't even imagine how it feels to be told on the front page of every paper, and on every news bulletin, that you - specifically you - should not exist because of someone you happen to be related to. Someone you didn't choose to be related to. And at a time when you're grieving for the loss of your siblings to boot.