NHS

Day 389

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This day last year, a memorial service was held for my son at the Great Hall of his former school. It was a deeply moving occasion, filled with love. More than 250 people attended. He earned more love in his 20 short years than some people do in a lifetime.

The Coroner’s inquest into the suicide of my son is still unfinished but as his mother and his prime carer here are a few facts.

  1. An Honorary Consultant Psychiatrist saw him 3 weeks into his illness and made a diagnosis of Bipolar Disorder.

Did he speak to any of the family members/carers about this diagnosis and what it might mean for us as a family?
No.
Did he send him home?
Yes.

  1. His GP was the only one who knew he was severely suicidal for at least 4 weeks before he died as he did not mention it to anyone else.

Did he tell any of the family members/carers?
No.
Did he send him home?
Yes.

  1. The handover from the psychiatric team to the GP should have highlighted the diagnosis.

Did the letter tell the GP about a new diagnosis of Bipolar Disorder?
No.
Did it tell him to watch out for depression?
No.

  1. The trainee psychiatrist who wrote the discharge letter to the GP must have seen my son at least once.

Had he?
No.

Am I surprised now that my son is dead?
No.
I am surprised that he lived for as long as he did. He followed every instruction he was given and took his medications religiously. He really wanted to get better.

He just didn’t get the care that he deserved, from the specialist services, primary care services or his parents. All of them failed to talk to each other in a way that would keep him safe.

In theory, the NICE guidelines say that carers should be given written and verbal information about the diagnosis and management of Bipolar Disorder, about positive outcomes and recovery and about the social and psychological support available for them. They encourage a ‘collaborative approach’ respecting the interdependence between the patient and their carers.

In practice, none of the above took place.

It was as if the existence of carers, in this case his parents, was not acknowledged. I felt that my concerns regarding his ill health fell on deaf ears.

I believe that unless families and carers are empowered with inclusion and information, young people will continue to die unnecessarily. Unless primary and secondary care services work in unison with each other and with the carers at home, patients will continue to fall through the gaps. This is not the first time it has happened but no lessons have been learnt.

I would not wish this nightmare on any family and I want to do everything I can to highlight the areas where we can improve care. Suicide is the biggest killer of young men all over the world and the numbers continue to rise every year. We as a community need to educate ourselves and help young people. We need to ask more questions. We need to demand better care for our children and other close relatives and friends.

Carers care. He was my only son. His well-being was on the top of my list of priorities. I had a right to know about his diagnosis and his suicidality in order to look after him properly.

He did not get to celebrate his twenty-first birthday.
I miss him every minute of everyday and I always will.

Day 382

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UK has the highest rate of self-harm in Europe.
About 1 in 10 young people have self harmed.
It is nearly 3 times more common in women than men.
The highest number of calls made to Childline are from 12 year old kids self harming.
At least half the people who end their own lives have a history of self harm.
Around 200,000 episodes of self harm present to hospitals per year.
Many people who self harm do not seek help. Hence they are not reported or recorded.

What Self harm is not :

-Attention seeking behavior.
-Manipulative
-A selfish act
-Done for pleasure
-A group or sub-culture activity
-A copy-cat response

Why is it done?

A release or distraction from emotional distress.
An expression of anguish.
An act of survival – a way to postpone suicide.
A form of self-punishment for feeling ‘bad’ or ‘dirty’.
A way of feeling’in control’
To feel real or alive if they have been feeling numb.
Difficulties in problem-solving
Low self-esteem
Anxiety/Depression
Eating disorders
Difficulty coping with anger
Difficulty dealing with sexuality.

What to do if someone is found self-harming?

  • Stay with the young person and if necessary, take them to A&E.
  • Monitor closely
  • Use Strengths and Difficulties Questionnaire  to make a judgement on mental well being.
  • Ask about suicide
  • Administer first aid
  • Advise them to get help: GPs/Psychologists/Psychiatrists/CAMHS 
  • Introduce them to self-help strategies

What not to do:

  • Do not blame them or make them feel guilty
  • Take them seriously
  • Do not act shocked even if you are
  • Avoid panic or anger
  • Be patient. It can be very hard for them to talk about it.
  • Don’t dismiss them as manipulative / attention seeking.

Day 377

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Today I was visited by 2 very unwelcome guests – anger and resentment.

Anger at this whole situation!
At myself for being so ignorant, for not having picked up on any of the warning signs, for happily being in denial about the seriousness of his illness, for not asking for help, for asking for help too late and from the wrong people! I felt angry at everyone who knew he was suicidal but did not tell me because he didn’t want them to or for reasons best known to them. I felt angry at everyone he and I asked for help from and they didn’t or couldn’t. I felt outrage at the people we trusted and who let us down!

I felt furious at the ‘honorary’ consultant psychiatrist who was supposed to ‘look after’ my son. He is an academic, hence works with real patients only one day per week. The rest of the time he does research. Research is useless unless best clinical practice and better outcomes for patients are achieved. Given the proximity of South London and Maudsley Hospital to the IoPPN (Institute of Psychiatry, Psychology and Neuroscience, King’s College. London) patient care should be better there than the rest of the UK but it isn’t. Most consultants are ‘honorary’ and their main focus is research.

I felt resentful of everyone who doesn’t have to light a candle in front of their dead child’s picture everyday.

The present moment is inevitable. The present moment is inevitable, The present moment is bloody inevitable.

Day 376

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Today I was introduced to a new phrase – ‘September Surge’. Apparently this term refers to the remarkable increase in workload of Mental Health services in the month of September. I don’t know why that is? I suppose my son would have been part of this surge last year.

The Panorama programme on BBC last evening reported the state of crisis in Mental Health services in the UK. Over the last 3-5 years as many as 3000 inpatient beds have been closed down while the demand has been steadily on the rise. Often there are ‘no beds’ even for emergency admissions. As a desperate measure the least unwell patients have to be discharged from the wards even when they are not quite ready. Or else, some patients are referred to the Private sector, which is also getting saturated.

Staff members dealing with this shortfall in resources seem really concerned for their patients. Their heart is very much in the right place and one can see the frustration this daily fire fighting causes them. The impact of working under so much pressure everyday must put a huge strain on their sense of wellbeing as well. The wide gap between how things should be and how they are must make them feel highly inadequate and demotivated for no fault of their own.

What is the long-term view on funding the mental health services? Is there one?

Last week we got a new ‘robot’ for our operating theatres. It costs only 2 million pounds. But that is for cancer surgery, of course.
Within the last one year I personally know of at least 2 young men who have died while waiting for their first  appointment with a psychiatrist.

How can there be such disparity between services? How can we tolerate it?

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.