Bedtime stories

All those decades ago when I was at school, bullies were visible. Their names were known. They were often big built and their demeanour, unpleasant. Girls could be bitchy, forming little clubs ousting this one or that one depending on how jealous they were of them. The playground was the scene for most unplayful activities. Lunch time was about much more than just lunch.

The only respite was that I knew when I left school I could leave it all behind and come home feeling safe. I wouldn’t have to deal with all that unpleasantness that went on at school.

Now, bullying happens over the electromagnetic waves all times of day and night, incessantly with no breaks. It can reach toilets and bedrooms. The instigators don’t have to have names or forms. They can be cowardly as hell and yet have the mean pleasure of bullying vulnerable people. The abusive messages are often un-erasable, making it possible for the victim to visit them repeatedly and being humiliated and traumatised over and over again. It is inescapable.

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In Arabic, ‘Sarahah’ means ‘honesty’. It is also a highly trending app for anonymous messaging, invented by Mr Towfiq (above) from Egypt. He says it was designed so people could have honest feedback on their strengths and weaknesses from their colleagues at work. But in the west it is the perfect platform for anonymous nastiness.

Here is some honest feedback on the App:

“The site is a breeding ground for hate.”

“I don’t recommend going on here unless you wish to be bullied.”

“Parents, don’t allow your kids to get this app,”

“This is an app breeding suicides.”

This powerful film entitled Bedtime stories by PAPYRUS emphasises the importance of keeping our children safe from online bullies.

Let’s play Politics!

National Confidential Inquiry into suicide and homicide in people with mental illnesses 2016:

In-patient suicides:

Suicide by mental health in-patients continues to fall, most clearly in England where the decrease has been around 60% during 2004-14. This fall began with the removal of ligature points to prevent deaths by hanging but has been seen in suicides on and off the ward and by all methods. Despite this success, there were 76 suicides by in-patients in the UK in 2014, including 62 in England.

Suicides after discharge:

The first three months after hospital discharge continue to be a period of high suicide risk. In England the number of deaths rose to 200 in 2014 after a fall in the previous year. Risk is highest in the first two weeks post-discharge: in a previous study we have shown that these deaths are associated with preceding admissions lasting less than 7 days and lack of care planning. There has been a fall in post-discharge deaths occurring before first service contact, suggesting recognition of the need for early follow-up. In all there were around 460 patient suicides in acute care settings – in-patient and post-discharge care and crisis teams – in the UK in 2014.

First of all I want to say that every suicide is a huge tragedy and must be prevented at all costs. Behind each of these numbers are precious lives and beautiful people. I don’t allow myself to forget that even when I am angry. This blog is a mere observation on how I have seen politics being played in front of my eyes in the last week. In light of the above findings, in consultation with his expert advisors and in all his wisdom, Mr Jeremy Hunt has decided to focus his attention on in-patient deaths – a group that is manned by the most highly trained professionals in a very controlled environment, a group that is on the list of ‘never-events’, a group that has already shown a decrease by 60%, a group where even a small reduction in numbers will amount to a big percentage and will make him look good.

With all good intentions, he has converted a healthy aspiration of Zero-suicide in the community to an unhealthy target for in-patients creating huge anxieties. Last week at the NSPA conference I heard Mr Hunt speak in the most self-congratulatory of tones about how wonderful it is that UK is the first country to legislate for ‘Parity of Esteem’. I am sorry Sir, that means nothing on the ground. The workforce coming in contact with the majority of suicidal people in the UK is largely untrained. They don’t even know how to talk with them, let alone ‘look-after’ them. The massive funding cuts focus on mental health which in turn results in poor training of junior doctors. When questioned directly about ‘parity of training’, he masterfully slips and slides away.

In my eyes you don’t look good Mr Hunt.

 

 

 

Small talk saves lives.

It’s a dry winter morning. I am in my favourite red jumper and floral denims, on my way to the therapist. I have seen him for 3 years and I remain completely unfinished. My train will arrive at this platform, Platform number 1, West Norwood Station in 4 minutes. There are only 2 tracks and only 2 platforms here. The sun is in hiding and all trains are delayed, allegedly due to bad weather. Despite 2 people ahead of me in the queue there is enough time for me to get a cappuccino with one and a half sugars from the newly-opened kiosk, the Blackbird Bakery. The pair of sweet,  smiley girls behind the counter have a way of making things work while maintaining an environment of relaxed, chatty friendliness.

A toddler in a pram doesn’t want her half-eaten kitkat anymore. She wants to feed it to the birds. Her mum takes it from her and lovingly puts it in her own mouth. She gets a quizzical look from her daughter. She beams a gentle smile back on to her baby.

Just as the train pulls up behind me, my order is ready. In the here and now, the yellowness of the foliage on the ground and on trees is bright as stippled sunshine. My drink smells like the warmth of Brazil. Grateful for no rain, I turn around and step onto the train holding my hand-warming  and heart-warming treat.

I look for a forward-facing window seat with a table. The one I find seats an unclaimed blue knitted scarf, coiled up like a snake. An overweight elderly lady sits with a smile opposite me.

‘Is this your’s?’ I ask.
The train starts to move.
‘No.’ says she.
‘How are you?’
‘I am ok’, she says in a strong Spanish accent.
‘Doing anything nice today?’
‘Going to see a friend in Victoria. We don’t talk much. We meet once a week. We go for hot-chocolate.’
‘That’s nice.’
She looks down at a picture of 3 pretty young women in her magazine.
‘I always wanted daughters but I got 2 sons and1 grandson. No girls.’
‘Boys are lovely too.’
‘Yes. But I would have liked a girl.’
I smile.
West Norwood station is well behind us by now.
Saagar, my son comes alive in my mind.
Platform 1 was where he spent his last couple of hours. That was 3 years ago. He was more than I could have dreamt of. All I wanted was him, his happiness. Nothing else.

He was there for at least two whole hours. No one spoke with him. Small talk saves lives. For every life lost on the railway, 6 are saved by those around them. Only if someone had interrupted his train of thoughts. Only if someone had trusted their instincts enough, to act. Only if someone had cared enough to ask if he was ok. Only if everyone had the basic tools of suicide prevention, just like they do for choking and drowning. Who knows?

Now, all I want is for him to come back to me.

Free on-line training for all, in Suicide prevention, launched by the Zero Suicide Alliance. 20 minutes of life-saving skills : https://www.relias.co.uk/zero-suicide-alliance/form.

 

World Suicide Prevention Day 2017

WSPD 2017

WSPD

231 school kids died of suicide in 2015.
Please support PAPYRUS in tackling this impossible reality.

‘Take a minute, change a life.’

Taking time to look out for someone who may be struggling, encouraging them to talk, offering a word of support and listening could help change the course of their life. Making someone a cup of tea, inviting them for a walk or a run, asking them,”Are you OK?’ could make a world of a difference to them. It would surely enrich your life too.

This series of short films is about real people and real stories. It’s about life and death. It’s about what we can do as individuals and as communities to help each other through dark times. It’s about you and me. Please scroll all the way down to watch all the snippets.

https://www.talkaboutsuicide.com/

A vigil will be held on Thursday, the 14th of September at Hyde Park, Speaker’s corner at 6.30 pm. We will get together to honour the lives of those lost by suicide. Please bring pictures, candles, stories, poems, memories and songs. It will be an occasion for us to celebrate our love.

Day 963

Wysa

A young couple, committed to making a difference used their love and  intellect to create Touchkin, Artificial Intelligence for proactive care, integrating behavioural health into medical practice.

Tom Insel, a psychiatrist from National Institute of Mental Health (NIMH), the world’s largest mental-health research institution, spoke frankly about how MH services and research were failing to help the mentally ill. He openly dismissed the DSM (Diagnostic and Statistical Manual of Mental Disorders). At any given moment, roughly one in seven of the world’s 7.5 billion people is struggling with mental illness. “We’re not going to reach all those people by hiring more psychiatrists,” says Insel. But we might reach them with smartphones.

In one of his talks, Insel was sharing the intricacies of the delicate workings of the brain.   Someone interrupted him and said, “You don’t get it. The house is on fire, and you are discussing the chemistry of the paint”

Jo Aggarwal, one of the developers of Touchkin says:

“This line from the article resonated deeply with me. It’s a familiar sentiment – one many of us in development have had in conferences on employment, education, conflict. They are all at some level connected to the base fire that engulfs our world today – that of mental health. Until this fire is brought under control, we don’t have a hope for any of the rest of it.

His dramatic move lends credibility behind the idea that phones may be the answer. Identifying issues using smartphone behavior is powerful, though it can feel creepy. But detection is not enough. In our trials at Touchkin, phone sensors were able to predict depression in people with diabetes to a 90% accuracy, and went a long way in getting the physicians convinced to integrate mental health into their regimen. But only 1 in 30 people diagnosed went on to take treatment for the depression.

It said to us – “The house is on fire, the fire brigade is missing, and here we are saying how accurate our fire alarms are”

Wysa the emotionally intelligent penguin willed itself into existence somewhere along the way. It was a side feature created between ‘formal’ projects to improve accuracy. Taken by how people reacted to the prototype, we all kept working on making it better… in three months it crossed a threshold. It started changing lives. Last month, 3 people wrote in to say it saved their life, it is what is keeping them from suicide. Over 50,000 people talked to it anonymously, and thousands of them wrote in to us to say how much it meant to them.

Unlike the Stanford psychologists creating Woebot- we have no hypotheses around Wysa. It is evolving entirely based on what works for its users. It has evidence-based techniques, but everytime we add more tools or advice or tips we get users telling us to just let them talk to Wysa, and not to underestimate how much of a difference that makes.

“The fire in the house, is in our brains. The fuel is the language of the conversations we have inside our head. “

We started out, like Insel, trying to detect the fires… Wysa is leading us to try and put a fire extinguisher in everyone’s pocket. Any pretence of our own hypothesis went out of the window when the first person wrote in to say it saved their life. Now we are following it to see where it goes.

Like us, like Tim, there are many unwitting recruits to this fight.

Rick Little started fighting it as soon as he graduated college. So many of my friends… Sangeeta Mahajan who lost her son to suicide and has dedicated her life to preventing it for others. Anjana Ajay who is changing others lives after healing her own Stage 4 cancer by focusing on healing her mind. Bhavana Issar who is doing amazing work at Caregiver Saathi.Pooja Goyal who is creating resilience in pre-school children and their parents, bravely facing all the storms that come her way. Archana Aggarwal Sarda has made emotional support a way to get intl level diabetes outcomes in rural children, long before she realised that she was doing it.

None of them are psychologists. They each have options of more comfortable, lucrative ways to spend their time. They are all powerless to not do this. “The house is on fire. Once you see it, and you realise that you can stop it spreading, it is hard to do anything else.”

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Day 962

A letter of recommendations addressed to SLaM, drawn up along with another mother, who lost her son, Simba, to suicide:

“The laws that govern the relationship between professionals and patients namely:  the Data Protection Act (1998), the common law duty of confidentiality, and the Human Rights Act (1998) are all silent about the nature of the  relationship between  professionals and carers. This is because these laws regard each citizen as an autonomous agent capable of making decisions with regard to their own rights.

The Common Law Duty of Confidentiality in particular has been derived from the millennials-old Socratic oath taken by doctors, which is absolutist in its injunction stipulating that there is no condition under which doctor-patient confidentiality may be broken.  The 21st century has witnessed a significant shift in the doctor –patient relationships as well as, increasingly, in the doctor-patient-carer relationships. The increasing need to care for patients outside of hospitals and within communities or in their homes, has necessitated a requirement for greater collaboration between professionals and carers.

Given the pivotal roles of carers in the management of service users, the professional’s duty to share information with carers is covered by the 7th Caldicott principle: the duty to share information can be as important as the duty to protect patient confidentiality.

As carers who have had first-hand experience of caring for loved ones, we set out below some recommendations which we believe will help professionals and carers in working more effectively together for the well-being of service users and carers.

Carer’s Recommendations

  1. Patients should be actively encouraged to nominate someone they trust in their care, right from the beginning. This practice should be so well engrained that the nominated person becomes an integral part of the process of care and recovery. It is also recognised that a patient may nominate a trusted person who is a friend to attend meetings instead of a family member, as the presence of the relative may inhibit frank and honest disclosures with professionals. For example, in CAMHS a young person may trust a friend to advocate for them more than they trust their parents. If this is the case, the right of the carer or next of kin to be kept informed of the care plan should also be respected, so that they are not left out of planning and can continue to care effectively.

This recommendation is particularly relevant if the service user lives with the carer.

2. At the time of diagnosis, accurate information about the nature of the illness and the choice of treatments should be given to the carers, in written and verbal form or on- line if such facility exists. They should be made aware of their rights as carers and encouraged to partner with health professionals in the care of the patient. They should also be given realistic information about the natural course and mortality of the illness. This may mean spending more time with patients and carers at consultations, and the need for additional support services.

3. Carers should be provided with the following:
– Diagnosis or working diagnosis of the psychiatric condition
– List of symptoms to look out for.
– A management plan.
– Choices of treatment.
– Possible side-effects of any medication.
– Possible roles for the carer in managing symptoms.
– Sources of support for the carer, for example pamphlets or online resources.

  1. Professionals must remember the following when working with carers:

– To be more transparent in their communication with carers.
– To anticipate the carers need for information, providing necessary information about the nature of illness and available services even if the carer does not directly ask for this.
– To have empathy and willingness to engage carers and build a trusting relationship.
– To consider that carers may need practical support in order to be effective carers.

  1. The carers must be educated and empowered with knowledge about the psychiatric condition. They should be made to feel involved in the process of care, especially if the patients are being cared for in the community. Crisis teams and early intervention teams should engage members of the family in the care package.
  1. It needs to be understood that carers are a valuable resource, and must be listened to, as they spend more time with the patient than professionals do, and therefore will know them well. Even when service users instruct teams not to see their families, professionals should always meet with the families for collateral history, and especially if the family requests to be seen by a professional. Carers and friends know their relatives well enough to see early warning signs, and should be encouraged to share such information if necessary, in confidence with professionals especially if the service user is too ill to give consent because they are lacking in insight.
  1. Carers’ perspectives should be part of the training curriculum for junior doctors and medical students wherever possible.
  1. Patients should not be discharged from one team to another or from specialist care to primary care without arranging an early follow-up date. Given the risk of patients falling through cracks in the service following discharge, carers should be given adequate information about service structures and not merely told to go to the GP or the local AE in crisis situations.
  1. Decision making around the timing of discharge should be properly scrutinised, as premature discharge could have disastrous consequences.
  1. Discharge plans should include information for carers about the following:

-What are the warning signs to watch out for?
-What service number to call?
-How quickly one can expect help to arrive.
-Where to go in day/night time in a crisis.

  1. GPs must also understand the importance of engaging with carers, listening to them, and sharing important information.
  1. Community teams should engage patients and families in discharge planning. Where necessary, designing a crisis plan should be a joint enterprise between teams and patient and family. Carers should be involved in the design of the plan, and be given a copy of the finished document. Professionals must anticipate any problems with the patient and share them with carers at the time of discharge.
  1. Organisational structures should be redesigned to address the problems brought on by the strict compartmentalisation of services. This can be a hindrance to the provision of safe and efficient patient care.
  1. Mishaps and suicides should be investigated within a week, with the intention of learning lessons and preventing future serious incidences due to the same causes. Carers should be involved in this process, in order to hear the story from their point of view and arrive at real answers. Defensive investigations do not add to learning or patient safety. Contact with families must be at the earliest possible time following death or serious incidents. This is the time when families are most vulnerable and require information about their loved ones from those who were present. Legal considerations of blameworthiness should not prevent staff from empathetic consideration and communication with the bereaved families. Likewise, protracted legal processes should not be allowed to stop the trust from reaching out to bereaved families. Carers understand that staff may feel vulnerable following serious incidents but it should be understood that carers feel equally vulnerable and unlike professionals, may have no access to support networks at such times.
  1. At Coroner’s inquests, the trust should send representatives who have a deep knowledge of the case and who will not hide behind jargon.

 

Day 953

Discrimination at all levels

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All anaesthetic drugs work in mysterious ways. They mainly work on the brain. One of them is Ketamine. I have used it many times as an anaesthetic and to treat resistant pain. It’s relatively safe even in hands with limited experience. It’s used in all age groups. It’s known to cause ‘Dissociative’ anaesthesia and pain relief. It works through blocking NMDA (Glutamate N-methyl D-aspartate) receptors. Unfortunately, it is known to cause tolerance and dependence. It is also used recreationally.

Recent studies have shown that Ketamine has a significant beneficial effect on patients with treatment-resistant Major Depressive Disorder(MDD). The improvement is often seen within 4 hours of administration. This is the subject of many recent research papers but much more needs to be done.

It is estimated that about 3% of the UK population, nearly 2 million people suffer from depression. A small proportion of them, about 158,000 have depression that resists treatment. Currently, only 101 people are able to access ketamine in Oxford. About 40% showed sustained improvement after taking it.

It is potentially life-changing treatment for those suicidally depressed. Michael Bloomfield from UCL says “Unfortunately, medical research spending for mental illnesses is extremely low compared to other medical conditions. Clearly this needs to change if we are to improve treatments in the future.”