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 knew 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.