Patient safety

Day 368

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‘Dying from Clear skin’ is a BBC documentary on Jesse Jones, a teenager dealing with acne like many others one might think. But he ended up taking his own life. Elements of low self esteem and bullying cannot be separated from the issue of acne. Jack Bowlby, a 16 year old from Wantage in Oxfordshire, killed himself at Cheltenham College. His inquest was told he experienced “dark thoughts and violent mood swings” after taking Roaccutane. Jon Medland, a medical student from Devon did the same after 3 weeks of starting the same medication.

Accutane (Isotretinoin) is a medicine used for treatment of acne.

Although it’s main desired effect is on the oil glands in the skin, it works on the whole body. Side effects are numerous and widespread, and affect at least 8 out of 10 patients. Side effects are most often mild to moderate and reversible, but in some cases can be severe or long-term. Accutane can cause severe birth defects if taken during pregnancy.

In reduces blood flow to the brain, causing headaches and depression as well as hearing and visual impairment.

I am no dermatologist but in my experience as a patient and a carer, doctors are not very good at telling us the side effects of the medicines they might start us on.

Parents have been noticing the connection between suicide and Roaccutane and lobbying against the drug for the past few years.

In a statement, Roche said: “Whilst no definitive cause and effect relationship has been established to directly link mood swings and depression with the drug, there have been rare reports, amongst both those taking Roaccutane and acne sufferers in general.” Figures show one in 10,000 people will experience serious side-effects. More than half a million people all over the world have been prescribed this potentially lethal medicine.

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 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)