NHS

Day 353

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The psychiatrists assumed that they should not speak to me about my son’s illness because he was antagonistic towards me during his manic phase, the time when they diagnosed him with Bipolar Affective Disorder. They sent him home, to live with me.

I assumed that they would tell me if there was something really serious that I should know, like the diagnosis, the trajectory of the illness being unpredictable and the mortality rate being higher than many cancers.

The psychiatrists assumed that the GP would be able to figure out the diagnosis from the Discharge Summary written by them.

The GP assumed that they would tell him more clearly and emphatically if there was something as serious as Bipolar Disorder.

I assumed that the GP would tell me that I was living with and looking after someone who had been having thoughts of ending their life almost on a daily basis. He prescribed some drugs and sent him home with me.

They all assumed that my ex-husband and I were educated people and would find out all the things that parents should know about their adult child’s illness.

I assumed that my son would say something to me if he was really struggling.

Everyone assumed he would get better. He assumed he never would.

None of these assumptions turned out to be true.

The things we assume!

Day 352

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By midmorning I had replayed yesterdays proceedings in my head a few times over. I could feel the anger rise inside me every minute and by afternoon it was an absolute torrent. The assimilation into my system of the facts revealed at the inquest resulted in feelings of absolute pointlessness and hopelessness. Nothing is ever going to change. One of his treating doctors said it in so many words, “Suicide is unpredictable and unpreventable”. I felt furious at the people who had allowed my son to suffer for weeks and weeks before he gave up on everything. He wanted to live. He followed every instruction given to him. He wanted to get better. He communicated how he felt the best he could. No one got it!

Luckily I had an appointment to see my homeopath this afternoon. It was a lifesaver. She was willing to listen to me and give me the space I desperately needed to express that terrible rage. She understood. She was there for me in body, mind and heart. After spending an hour with her, I felt relatively unburdened.

Allopathy doesn’t allow for that kind of therapy. It is defensive and supposedly “evidence based”, dry and prescriptive. It undermines other forms of treatment that offer the compassion that it is incapable of. I am sure there is no ‘scientific’ explanation why my arthritis is flaring up. Just as there is no ‘scientific’ explanation why my son died.

Whatever the inquest finds, I still have to work my way to being ok with settling for lighting a candle in front of my beautiful son’s picture every evening for the rest of my life.

Day 350

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This is what I want to say in court tomorrow:

“Once again, we have found the same shortcomings as have been discovered in previous inquests related with suicide. The story is different but the themes are the same – various parts of the NHS not talking to each other, risk of suicide not being assessed properly and safety plans not put in place, training in mental health for GPs being inadequate, support for families being poor and follow-up after discharge from specialist services being completely not pro-active. Same things …. again and again.

Clearly, the findings from previous inquests have had minimal bearing on practice so far. Will this one be any different? Do we have the time, money or will to look after patients with mental ill health properly? Does it really matter to us as a society, as a country?

Given that suicide kills more young people than AIDS, road traffic accidents and violent crime put together, we have a long way to go. Let’s wake up and educate ourselves. Let us demand better care for ourselves and our loved ones. In the case of suicide, prevention is cure. If not prevented, it is too late, too final and too painful.

We all matter. Each one of us.

To quote Sir Liam Donaldson from 10 years ago –

“To err is human.
To cover up is unforgiveable.
To refuse to learn a lesson is inexcusable.”

Love you Saagar. Rest in peace my darling.

Day 349

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The Coroner’s inquest takes place on the 2nd of October, exactly 2 weeks short of his first death anniversary.

2nd October also happens to be a national holiday in India to honour Mahatma Gandhi’s birthday. He is one of my heroes, a man who stood for truth and non-violence.

Until today I have somehow been able to push the imminent inquest to the back of my mind but suddenly I am aware that it is less than 36 hours away. I trawled the internet this morning to gain an insight into what the process had been like for other people. I watched a few videos and found that it was very different for everyone.

I don’t know what to expect of the process, of others and of myself. I suppose that is a good place to be. What will be will be. I have been preparing for this day subconsciously since Day 0. This will be an opportunity to really be a “witness” in more ways than one.

Whatever happens, my son will not be coming back at the end of it. I will probably relive the entire experience in all its details all over again. That will be a familiar process as I have done it countless times already. But this time there will be other people in the room, participating in the conversation. That will be strange but I am open to it.

Somehow, the upcoming inquest is currently occupying a large part of my brain. My nervous system feels jangled. The butterflies in my stomach are fluttering really hard and my limbs feel week.

It’s not about my son or me anymore. It’s about learning meaningful lessons and bringing them into practice. It’s about acknowledging the tragedy that is suicide, not just for affected families but for the whole world. It’s about being aware of and sensitive to our own and other people’s suffering. It’s about never letting anyone suffer alone.

(Time: 9.30 am; Place: Southwark Coroner’s court. 1 Tennis Street. London. SE1 1YD)

Day 346

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In the investigation report on my son’s SI (Serious Incident), the authors have applauded the doctor for taking longer than 10 minutes on consultations and providing us with ‘reassurance’.

Both, seemingly good things.

Is the length of time spent on a consultation a good enough measure of the quality of assessment? Time is something we can measure, which is why we measure it. It has no bearing on the quality of a consultation. Did the appropriate conversation take place? Were the salient features of the type and severity of illness correctly assessed? In someone who is severely depressed was a proper risk assessment for suicide made and a safety plan put in place? Was the family made aware of the seriousness of the illness if they were expected to take care of the patient at home? If the patient had presented with a mental illness, were the concerns of the carers listened to? Was the effectiveness of current medications evaluated? Was a specialist referral deemed necessary?

Does the time spent on a consultation in any way indicate the ability of a doctor to deal with a problem when all he has to offer at the end of it is ‘reassurance’? No one is expected to know everything about everything and that is why we have telephones. We can remotely ask for help and opinions. It is easy to do. When I have a tricky case that is what I do. When I have trainees with me I actively encourage them to ask for help if they have the slightest doubt. It does no harm.

The old version of the Hippocratic oath says:
“Practice two things in your dealings with disease: either help or do not harm the patient.”

The modern version says:
“I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.”

So, while ‘reassurance’ may seem to be comforting, it can be terribly misleading. The patient’s and carer’s best interests lie with the acknowledgement of the truth, followed by appropriate action.