bipolar

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 351

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A young man with floppy blonde hair sat next to me taking notes frantically. He had a massive folder on his desk. When I looked carefully at the writing on the spine of the folder, it read, “Master File Dr GP (Mr SN – Deceased)”

I sat in the courtroom looking at that label for a long time, thinking once again about the drama of life – a room full of people looking really solemn discussing the nitty-gritty of a young man having ended his life. For a while, I couldn’t hear any sounds but I could see lips moving and heads nodding. It was surreal. Once again I was looking in from the outside while sitting in the room. Was it me or was it him?

It was a gentle and compassionate process despite which the day felt very long and exhausting! A few glaring facts came into light – it was not clear to the GP that this patient had been discharged to him with the diagnosis of Bipolar Disorder. Apparently the discharge summary only made a passing remark on “Royal College of Physicians leaflet on Bipolar Affective disorder was given to the patient” without specifying Bipolar as the working diagnosis.

The presence of 3 lawyers in the room made the atmosphere quite tense and defensive but underneath that exterior, I could see the humanity and fragility of all concerned. At one level, I know that it is really important to examine each detail closely to stop this from happening again but at another I feel like there is no point. It’s too late for us anyway. Every new fact is painful. I know it’s selfish to think like that. But I am selfish. I would like something in return for going through all this pain but there is nothing at the end of it, if it ever ends.

It’s not over yet. Part 2 of the inquest will be in mid-november. Well. We are where we are.

Day 348

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If anyone you know came to you and said,

“For the last few weeks I have noticed that nothing gives me any pleasure; I don’t feel interested in anything; I feel quite hopeless and I sleep all the time. Some days I can’t sleep at all and feel terribly restless and fidgety; I feel wretched about myself all the time and hardly feel like eating anything. I feel really tired and can hardly focus on anything. This has been getting worse for a few weeks but for the last 2 weeks, almost everyday the thought has occurred to me that I would be better off dead or hurting myself in some way. All these things have made it extremely difficult for me to do my work, take care of things at home or get along with other people.”, what would you think?

They are suffering deeply.

This is what a PHQ-9 score of 27/27 looks like.
This day last year, my son’s score was 27/27.
It had been 19/27 two weeks prior but had since risen.
I had noted the deterioration in his state of mind.
The words my son could not utter, he indicated on paper.
He was suffering deeply but sadly his suffering was not acknowledged by the professionals who we trusted to care for him.

If clinical judgement had been astute enough, we would have picked up on it and possibly turned it around – escalated care, reviewed medications, reviewed dosages, taken him to A&E.

If a patient with diabetes had a dangerously low blood sugar or another one with Hypertension had a sky rocketing blood pressure, would we just ignore it?

The investigation report mentions the PHQ-9 test as a ‘blunt instrument’. If that is the case, why is it used so widely? Why is it a well-recognized monitoring tool for patients with depression? How can it be ignored when a patient has the highest possible scores?

A baseball bat is a blunt instrument. But it has its uses. It can take a team to victory and crack a skull.

In the light of what I know now, it is not surprising that my son died of severe depression. In fact, it is surprising that he hung on for as long as he did.

Just because the patient is sitting and talking to us and there are no lumps and bumps, no obvious bleeding or pain, does not mean they are not suffering. They are slowly dying in front of our eyes. Their suffering is so unbearable that they will do anything to get rid of it. They are ashamed of it and can’t bring themselves to talk about the extent of it.

We need to learn to pick up on subtle signs.

When it comes to suicide, prevention is the only cure.

Day 339

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In a special little box highlighted in a greyish shade of blue the BNF (British National Formulary) says:

“The balance of risks and benefits for the treatment of depressive illness in individuals under 18 years is considered unfavourable for the SSRIs citalopram. escitalopram, paroxetine, sertraline, mirtazapine and venlafaxine. Clinical trials have failed to show efficacy and have shown an increase in harmful outcomes. However, it is recognized that specialists may sometimes decide to use these drugs in response to individual clinical needs; children and adolescents should be monitored carefully for suicidal behavior, self-harm and hostility, particularly at the beginning of treatment.”

This has been known for 10 years.

GlaxoSmithKlien came under heavy criticism when they were accused of ‘concealing’ important information from the public at the risk of harm to patients in the US.

In the UK, criminal action was taken against GSK and these medications were labeled as ‘suicide pills’.

Adolescent brain development studies have shown that the structure of the brain continues to change from the teens till early twenties before it assumes adult form.

In different countries, the definition of ‘adolescence’ differs. In America, consumption of alcohol is illegal below 21 whereas in the UK it is illegal under 18. In a medical setting, does ‘under 18’ mean that if the patient is a few days or months over, the rule does not apply to them?

My son was ‘around 18’, at the beginning of treatment, not monitored carefully and not under specialist care. This side effect of the medication that he was taking was not mentioned, leave alone ‘emphasised’ to me. No safety plan was put in place.

Could the choice of medication be responsible for what happened?

Or was it the way it was used that contributed to it?

Questions, questions and more questions.

The report of the joint investigation between the Mental Health services and NHS England is delayed again. They are also probably grappling with many questions. The Coroner’s Inquest is in less than 2 weeks.

Let’s see if we can find any answers.

Day 333

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A young nurse approached me and said “I just wanted to thank you for writing that article. I was not sure but now I know exactly what I need to do.” We stood hugging each other for a while in the hospital corridor this morning. I felt grateful for that moment. Her heartfelt gratitude brought tears to my eyes.

The response to the article makes me feel as though people have been waiting to hear more about mental illness and suicide. They have been like unacknowledged entities that exist amongst us silently. Or maybe we have been deaf-mute so far and now are ready to speak and listen. It is about time; already too late for some of us.

Last week I met a young doctor whose wife is near the end of her GP training. He told me that she has not spent any dedicated time in psychiatry during the 3 years of her training. Nothing at all. This is still happening. 1 in 4 patients attending a GP surgery present with a problem which has a direct or indirect bearing on their state of mind.

CPR (Cardio Pulmonary Resuscitation) is part of mandatory training for all doctors because it saves lives. But Suicide Prevention is not. Does that not save lives?

Those that speak out tend to be those who have been most affected by mental illness and suicide. That something good comes of their/our suffering and loss is but a small consolation but perhaps it was always this way:

Like to a ship that storms urge on its course,
By its own trials our soul is surer made.
The very things that make the voyage worse
Do make it better; its peril is its aid.
And, as the storm drives from the storm, our heart
Within the peril disimperilled grows;
A port is near the more from port we part –
The port whereto our driven direction goes.
If we reap knowledge to cross-profit, this
From storms we learn, when the storm’s height doth drive –
That the black presence of its violence is
The pushing promise of near far blue skies.
Learn we but how to have the pilot-skill,
And the storm’s very might shall mate our will.

– Fernando Pessoa