RxISK Stories: Listening to Parents

Anonymous

When you lose a child or a partner from a rare illness, everyone is supportive, no-one denies you. They listen. But if a child dies from suicide or a complication of treatment with a drug especially a psychotropic drug no-one listens. Our culture has no place for this kind of death. They say maybe it’s for the best. He’d never have been able to face the life he’d have had – something they would never say this about a child with cancer.

The system tells you that your child had a serious mental illness, when in fact he might have started on drugs for ADHD or anxiety. It tells you his diabetes was a complication of his schizophrenia when it was caused by Zyprexa or Quetiapine. If you are like me, you assume no doctor would give your child a drug that wouldn’t benefit him. You see the deterioration but unless you keep a record and can show that each time things got worse the change coincided with treatment, you do not think it could be the drugs. It’s easier to live with the idea that the problems come from an illness rather than from the treatment. I told my son he had to take the treatment when he begged me to let him stop.
If he fails to get better the dose will go up – in other areas of medicine a failure to respond leads to a change of strategy. But in this case drugs are added to drugs. If he becomes edgy or paranoid or can’t sleep these are all excuses to add more drugs rather than stop the treatment. Cold turkey from one drug might be thrown into the mix of other drugs.

If you later figure out somehow that what happened was drug related – you get angry. You phone the doctor – you want to talk to them. They tell you no it’s not the drug – your son was mentally ill. They’re in denial. Their vested interest lies in not believing the treatment they gave might have caused the problem.

You meet other people who introduce you to all that was known about the problem before you ended up locked in it – because they have been there before you. You may get in contact with the few experts who seem to accept there is a problem. You cannot believe that others new about this but still nothing was done.

You want to correct things and you try to use the system. You’ve discovered this problem and you think if people hear the issues they will be as horrified as you and will say we mustn’t let this happen again. You might look for an inquest, get in touch with the Department of Health, the body responsible for licensing the doctor, the regulator, local politicians.

The regulator will refer you to the Department of Health, who will refer you to the licensing body for doctors, who will refer you to the professional body, who will refer you back to the regulator. We have all written to the regulator and the minister for health and we all get the stock letters back (Ed: See Margaret’s Story).

I went through the thing of doing suicide statistics to show there is a problem but got nowhere. The data are in fact corrupt and useless but not even the media want to know about this newsworthy story. The government is going broke because of its spending on drugs and you think it could use this as an opportunity to cut back on drug spending – but no. The professional body will decide that at least some fraction of other doctors would have done the same.

If an inquest implicates the drugs, you think that the next set of practice guidelines which you have heard are in development will reflect this but they never do.

You lose your faith and become a zombie. On TV there is always a good guy to put things right but here there isn’t. You will never be the same person again.

You’re alone with each other – husband and wife. First you blame yourself – then the other. It’s very hard to not blame each other. Husbands and wives break up. You need to be able to give to keep any relationship going, but you’ve got nothing left to give. You can’t make love anymore because love was all about children. You’re doing things because you know you have to, not out of any sense of fun. You can’t stand the memories even though you don’t want to lose them. You may be told you are depressed and your doctor is highly likely to suggest you need a pill.

You meet others who have lost children who have become advocates for more treatment. Other members of your family think you are deluded and family meetings become difficult. After time you find that the parents who see things the same way as you stop getting in touch, not because they have changed their mind but in an effort to get on with their lives. It just isn’t possible to grieve to a conclusion.

I was once you. I was middle class too. I believed in the system. I totally believed in the medical system. I used to pass the wastelands and see the disenfranchised, smoking dope or taking drugs, who rejected the system and were rejected by it – and thought can they not see if you just approach the world trustingly you bump into people whom you can in fact trust. Now I know no certainty. I have no choices. I have a wonderful GP but even there I have to be suspicious. I have become one of the disenfranchised.

Unforgiven

You want to forgive but you can’t forgive people who don’t ask for forgiveness. The doctor thinks he is doing a good job – all doctors think they are doing well. Maybe they couldn’t function if they thought otherwise.

I have – many of us have – fantasies about getting a hired gun – Clint Eastwood in Unforgiven. He might set up as a sniper near a pharmaceutical company, bomb its premises or lock up the doctor and force feed him the pills he put our loved one on.

The system needs to stop Listening to Prozac and start Listening to Parents and Partners. We need to be acknowledged. This will not be through an adversarial forum which has to rule one way or the other. It should have the power to acknowledge that drugs come with unavoidable risks and perhaps offer a 60-40 judgment that your husband or son was caught in a spiral that is easier to see in hindsight than at the time.

Doctors need a forum like this because if the drugs are not poisons that need expert input, they may end up being administered by nurses and pharmacists. At present treatment would often be safer if it were dispensed by a machine – the machine could be programmed not to keep you on treatments that don’t suit.

Doctors might have a more interesting and rewarding job if they recognized the problems treatment can cause. This is the moment when they could engage in genuine team work with patients or with parents or partners. Instead their default is – come back when you have had 10 years of medical training. They are fundamentally not team players.

We are the second hand sufferers of adverse events – the ones who get driven to suicide or premature death from heart attacks by the effects of prescription drugs on our children or partners. A grisly inversion of the DES story, where the daughters of mothers who had taken diethylstilbestrol developed cancer of the vagina in their teenage years. Rather than DES Daughters we are DSE Parents. Where are the doctors who want to recognize this side effect of treatment and bring healing?

RxISK Prize

I would like to establish an annual prize for a piece of work covering the adverse effects of treatment – the wider impacts these can have and the ways people or families may have found to overcome them. I cannot afford to fund this on my own. I would like to call for donations through RxISK.org to help fund this. RxISK has foundations in the US, Canada and the UK.

 

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Report Drug Side Effects

Help us make medicines safer for all of us by reporting drug side effects at RxISK.org. Less than 5% of serious drug side effects are reported. Our mission is to capture this missing data directly from patients through RxISK.org’s free drug side effect reporting tool and use this data to help make medicines safer for all of us.

When you report your drug side effect on RxISK.org, you also receive a free RxISK Report to take to your doctor or pharmacist. This report serves as a means to initiate a more detailed discussion of your treatment and the option to send a report to your country’s health authority — beginning with the FDA in the United States and Health Canada in Canada (more countries will be added soon).

Adverse events are known to be the 4th leading cause of death. Our goal is to knock these off the top 10 list. We can only accomplish this with your help.

Tell us your story today at RxISK.org.


RxISK: Research and report prescription drug side effects on RxISK.org.

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You and your meds. Give the real story. Get the real story.

Pharmageddon

Pharmaceutical companies have hijacked healthcare in America, and the results are life-threatening.

 

Dr. David Healy documents a riveting and terrifying story that affects us all.

 

University of California Press (2012)

 

Available on Amazon.com

 

Comments

  1. An absolutely brilliant description of the aftermath of a child suicide on a family. This is my story too. I have experienced the “in a better place” etc platitudes from family and friends, the ” it was the depression not the drugs” from health professionals, the avoidance tactics by others. So it continues Drug companies are not held responsible for flimsy and even false information provided with their drugs . Doctors are far too quick to choose the drug route to treat life’s problems, Their choice of drug determined by the pharma company sales patter and maybe a few clinical trial results skewed sufficiently in favour of their particular offering. When things go wrong for the patient it’s a higher dose or more medication – never a consideration that the medication is now the problem.

  2. The comment was:
    ‘even the media don’t want to know.’
    That is incorrect.
    It all depends on how you handle the media. Don’t forget, ever, that the media are always available for a real good, gobsmacking story of undeniable suspense, excitement and intrigue.
    We have a story here, that is gigantic. It is so gigantic that it has been missed by mainstream media because no-one has, yet, told it how it is – to the media.
    Many have tried, bits and pieces are hinted at, and yet, no-one has told the unvarnished story of how life can be snuffed, in a blink, by ssris.

    We have important blogs, we have books, we have a few incredibly brave people in the know, but no-one has managed to give a full account of what it is like, to the media.
    There are a few hundred people in the UK, hanging on by a thread, for some sort of recourse. Each and every one cannot say a word about it for various political/legal/personal reasons.
    Suffocating stifling of people speaking out is going on for various reasons.
    So, what to do?
    Clearly, the constant arguements go back and forth and back and forth.
    ‘Nobody’ should doubt the strength in numbers of people who have been to hell and back with ssris and this voice is growing, and is strong, because if you can overcome the vile, deceitful, inept platitudes of ‘those who are there to protect’ and go through all the ‘horrors’ of the mental and physical agony, then the war is on.
    It is only a matter of time, now, before all this explodes, and a media storm takes over.

    See how the Saville case is exploding; take note, this is remarkably similar territory, but more grotesque and more rotten and more life-threatening.
    You have to know how to use the media, they are very open to ‘scandals’; sadly all the so called ‘medical experts’ just live in a different world of denial and back-off, when tested, because they are cowardly, inept, and somewhat, ridiculous, people, whose ‘careers’ are more important to them than ‘the ruination/sabotage’ of lives.
    This is now war on ssris and whoever wants to take it further ‘the ball is in your court’.
    Manage your life; manipulate the media. Don’t let them manipulate you. It is not difficult, think about who you are, and never, accept any less than you think you are worth. You only get one life, and it is to be lived, not ended prematurely, or even lived in a ‘drug-induced’ state; this is really not on and we know it.

  3. Here’s what I wrote a while ago in a blog post about a young professional hockey player and Harvard grad who killed himself after resuming his hockey career:

    When the myth of the speedy recovery by drugs is exposed, the mental health community lies to the public again by telling us that there was never any chance anyway. They now tell us that schizophrenia is a life sentence. In Tom Cavanagh’s case, the doctor painted a picture to the parents that death may be the only release for a diagnosis of schizophrenia. The obvious question that I would raise would be then why did you lie to me about speedy recovery?

    Cavanagh’s doctor sat with the family later to explain why Tom might have done this. He told them how the schizophrenia can manifest itself in males in their mid to late 20s. It can be, he said, a raging fire that grows out of control.”He painted a rather dismal picture of what the future is for someone with this disease,” Joe Cavanagh said. “That’s why we’re happy that he didn’t hurt someone and he’s not in jail.”

    The myth of the medical cure and speedy recovery is once again being use to prop up the community myth of the unhealable schizophrenic.

  4. No, media is not on your side. They are on the side of what pays for the newspaper, the magazine, the news website. That’s Pfizer, Glaxo Smith-Kline, Eli Lilly et al. they buy the ads, sponsor the staff golf tournament and fill the pages with marketing department written advertorials (prose ads). This all pay the way for print media especially who are in a losing battle against the internet.

    Media will do one or three human interest stories, and that’s checked off the list. Don’t expect more.

    Media will report FDA warnings, use the comment sections to tell your experience, be as factual as possible, do not be profane or you risk being banned and then what good will your story be?

    Media will report court cases. Talk to the lawyers doing drug legal, they will tell you if you can join a class action.

    Report your negative drug effect to the pharmacist, to the FDA, MHRA or Health Canada. dO NOT BE DISUADED THEY WILL TRY. Fill out the forms. You don’t need to KNOW for sure the drug caused your vision loss, you just need to report you were taking a drug that you have now learned does that, when you had vision loss.

    Report your suspected injury. Don’t either rely on or expect your doctor to report to FDA et al. They will not, and will either shine you on, or be so hostile you go away in despair, and try to recover from further injury, verbal and emotional abuse.

  5. Learn how to use Google. Search: my drug name + vision loss. Start reading.

    Do not trust sites which are sponsored by or directly come from pharmaceutical companies. If there are side effects reported there for your drug, they will be minimized and called rare. Take note. It either happens or it doesn’t. If they say it happens to those under 17, same story, your body does not know it’s 27, it may be at 17. The drug either does that, or it does not.

    Some sites to check, apart from DavidHealy:

    Pharmalot: chronicling phamaceutical companies in court or heading there:
    http://www.pharmalot.com/

    BenzoSupport: benzodiazapine and anti-depressant withdrawal and recovery information. http://www.benzosupport.org/reovery_tips.htm

    Therapeutics Initiative: Run by a member of the Cochrane Collaboration our of the University of British Columbia, funded by the B.C. Ministry of Health, and takes no industry support to do their drug examinations: search your drug.
    ti.ubc.ca

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