The first time I saw Jeanette, she was acting in a play called ‘Hearing Things’ being staged at South London and Maudsley (SLaM) Hospital, where Saagar received (inadequate) treatment. The play was inspired by events and conversations from real ward rounds of patients with serious mental illnesses. It was written by the playwright often described by critics as the ‘English Chekhov’- Philip Osment, well known for giving a voice to those at the margins of society.
The play highlighted harsh facts through a story sensitively told. Just three actors illuminated the wide swathes of blurred lines between sanity and insanity, between the healer and the ill, between strength and fragility. I learnt a lot from it. It was a powerful blast that left me thinking about my roles as an ordinary member of society, a doctor, a mother, a patient. It gave me an insight into how and why the system does and does not work. I thought it gave me a little peek into Saagar’s mind. It certainly made me feel utterly close to him in an unearthly compassionate way.
A few weeks later I arranged to meet with Jeanette. I trusted her even before I knew her. She listened. We talked for a long time. She read the blog. I suggested a documentary. I spoke with some of Saagar’s friends and they wanted to participate. So was Si. We all had something to say. Ron and Jeanette filmed it last year.
This year we aim to complete it and release it. We have a name – ‘1000 days’. We have found a suitable and brilliant editor. We need to find some platforms to showcase it and we will. We are working on a crowd-funding campaign which will be launched within the next 10 days. The intention is to make this world a kinder and more understanding place. Watch this space.
She was 29. She had suffered with severe anxiety and depression since the age of 12. She was diagnosed with Borderline Personality Disorder and other things. “I have never been happy – I don’t know the concept of happiness”, said she. Aurelia had spent a couple of years in a Psychiatric unit and a couple in a prison. She wanted to be freed from her body. Doctors in the Netherlands agreed to assist her to end her life. On the 26th of Jan 2018, she drank the poisonous mix of drugs (supplied by medics), cosy in her bed, in the presence of her pals and 2 doctors, clutching her soft, pink, toy dinosaur and peacefully slipped away.
This is the beginning of the death of hope. I have full sympathy with Aurelia’s suffering. The question is:
Had every other option been fully explored and found useless?
Had she read Buddhist teachings or volunteered to help conserve a local park or anything else?
Had she tried travelling to a different country with a different vibe?
Had she tried Homeopathy, Ayurveda or Chinese traditional medicine?
Reflexology, Aromatherapy or Kinesiology? Music, theatre or art therapy?
The range of options explored are limited by the limitations of the imagination of ‘the system’. A purely medical approach is useless without attention to social factors. Many social issues cannot be fixed but they can be understood and imaginative alternatives offered.
Her death wish was most likely a symptom of her illness. No?
Does this euthanasia make it easier for many others to give up?
Can we be a 100% sure that she had considered all her options?
Had she received appropriate bereavement support when her mother had passed away?
My deepest condolences to her friends and her Dad.
RIP Aurelia. I am sorry you couldn’t find a reason to live.
“The past is never dead. It’s not even past.”
– William Falkner. Requiem for a Nun.
The echoes of past traumas get subconsciously played out by us in our everyday lives. Sigmund Freud called it ‘repetition compulsion’ – an attempt of the unconscious mind to replay the unresolved so that we can ‘get it right’. This mechanism drives its way through generations. Jung also noted that whatever is too difficult to process does not fade away. It gets stored in our unconscious and finds expression in other ways. He says,” When an inner situation is not made conscious, it happens outside as fate.”
Here’s an example: Jake was 19. He hadn’t slept a full night’s sleep in more than a year. He had developed dark circles around his eyes and a blank stare in them. He looked at least 10 years older. He had been a star student and a great athlete but the insomnia had left him lifeless. This thing had no explanation and none of his doctors or psychologists or naturopaths could figure it out.
It had started with Jake waking up shivering one night at 3.30 am, frightened to death. No amount of woollen clothing warmed him up. Soon, insomnia became a daily ordeal. Despite knowing that his fear was irrational, Jake was helpless and could not relax. The ‘freezing’ feeling associated with the first episode was quite peculiar.
On exploration of Jake’s family history, this story came out: His mum’s brother, Uncle Colin, whom he had never met had frozen to death at the age of 19. He was checking power lines in a storm in the Northwest of Canada. He struggled to hang on but eventually fell face down in a blizzard, lost consciousness and died of hypothermia. The family never spoke his name again.
Now, thirty years later, Jake was unable to slip into sleep at the same age as his Uncle. For Colin, letting go meant death. For Jake, falling asleep must have felt the same. Once Jake could see this link, he was able to free himself of it with the help of healing techniques taught by Dr Mark Wolynn, a neuroscientist with an expertise in breaking inherited family patterns. His book “It didn’t start with you”, describes some of these practical tools.
Scientists are now able to identify bio-markers as evidence of traumas passed down from one generation to the next. Studies on Holocaust survivors and their children have revolutionised the understanding and treatment of PTSD all over the world. Be it fear, guilt, low self-esteem or anxiety, the roots of these issues may reside in the traumas of our parents, grand-parents and even great-grandparents.
During his holidays, Saagar and his friends would be subjected to Woman’s hour on BBC Radio 4 second hand, as their mothers listened. They would later have amusing/interesting discussions about breast feeding, female education and employment challenges. This station was pre-set on the car-radio and at home. It was designated as the ‘old people’s’ radio-station by him. Invariably, ‘Gardener’s question time’ would come on while we were in the car together, travelling over the weekend. It was quaint by its sheer irrelevance to us as we could barely keep our 4 nameless indoor plants alive. Our urban pre-occupations meant we didn’t have a gardening vocabulary.
‘Just a minute’ was our all-time favourite – a panel of funny people asked to speak for one whole minute on a given topic without repetition, hesitation or deviation. The seemingly innocent topics often held great potential for hilarity, for example, billiards, the best thing about cats, how I spread a little happiness, keeping a straight face, my love of the absurd, garages and such. The correct and incorrect challenges posed by the panellists generated tremendous amount of laughter. Our attempts at giving each other topics resulted in great amusement.
On Thursday evening I was asked if I’d like to be a guest on Woman’s hour to talk about Saagar. It was unbelievable. It made me smile and cry at the same time. What a paradox! Of course I’d love to be on Woman’s hour. Under these circumstances? Meeting Jenni Murray was an honour. She was down to earth and professional, looking just as I imagined, in her trademark glasses sitting just above the tip of her nose.I told her she had my dream job. She said Joan Baez had been in the studio the day before, sitting at the same chair as me. How cool! Oops! Saagar prohibited me from saying ‘cool’ as he thought it sounded all wrong coming from me. I wonder how he would feel about this interview if he knew. Maybe he does.
Despite making notes and preparing as well as I could, I was a bit flummoxed by some of the questions. I didn’t say everything I wanted to. I hope there will be other opportunities. This conversation must grow until everyone is a part of it in a meaningful and constructive way. In a way that saves lives.
A recording of the interview with brilliant and committed Mr Ged Flynn, the CEO of PAPYRUS and I:
A few decades ago, cigarettes were everywhere. It was normal for men and women to smoke. Physicians were known to recommend smoking. The advertising machinery glorified it.
Today, Electro-Magnetic Fields (EMFs) are everywhere. They wrap us all in multiple layers of invisible weaves of radiations arising from cell-phones, baby monitors, cordless phones, bluetooths, wi-fi routers, smart meters and microwave ovens. There is very little information out there about the effect these gadgets have on our bodies and minds.
According to Dr Mercola’s research these EMFs cause a significant oxidative stress on our cells leading to the release of free radicals which in turn cause serious mitochondrial damage. Mitochondria are “powerhouses” of each cell, breaking down fuel molecules and creating the energy the cells need to perform their functions. Children are at greater risk of such damage than adults. Damaged mitochondria have been held responsible for anxiety, depression, autism, Alzhiemer’s disease, rhythm disorders of the heart and infertility. Dr Mercola also gives practical suggestions on how to minimise the damage.
In 2008, a Danish study involving more than 13,000 mothers revealed some sobering potential effects. Children born of mothers who used cell-phones during pregnancy as compared with children born of mothers who did not, experienced a :
49 % increase in behavioral problems
35 % increase in hyperactivity
34 % increase in peer-related problems
25 % increase in emotional issues
These findings indicate a huge impact on public health and need for further research. Mobile phones are now essential to our lives. Our days begin and end with them. Some people have it right beside them even when they sleep. Lack of one is considered odd. Not being able to locate one’s phone can induce a state of panic. ‘Low battery’ is a highly undesirable state. There is an official term for fear of being without a phone, NoMoPhobia (No Mobile Phobia). I think our generation was the last one to have reached adulthood without cell-phones. Now, they are everywhere.
Jo is a dear friend and mother to a 9 year old who is on the Autistic spectrum. Here she shares what it’s like to advocate for her son and how hard it is to ensure that he receives appropriate care. Thanks Jo.
PS: Incidentally all antipsychotic medications are known to cause severe mitochondrial damage too.
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.
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.
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.
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.
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.
Carers’ perspectives should be part of the training curriculum for junior doctors and medical students wherever possible.
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.
Decision making around the timing of discharge should be properly scrutinised, as premature discharge could have disastrous consequences.
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.
GPs must also understand the importance of engaging with carers, listening to them, and sharing important information.
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.
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.
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.
At Coroner’s inquests, the trust should send representatives who have a deep knowledge of the case and who will not hide behind jargon.
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.”
Till date I wonder what it must have been like for Saagar, to be diagnosed with Bipolar Disorder and to be on Psychiatric medications. I have read books, watched documentaries and films to gain an understanding of it and I think I have an idea but maybe I have absolutely no clue.
Watching a clip of Paul Dalio, a young man living with Bipolar disorder and a film director brought clarity in 2 and a half minutes.
“When you get diagnosed, you go from experiencing what you’re certain is divine illumination. After sometime in it, you’re thrown into a hospital, you’re pumped full of drugs, you come down 60 pounds overweight, completely disoriented and they tell you, ”No, there was nothing divine. Nothing illuminating. You have just triggered a lifelong genetic illness which will swing you from psychotic highs to suicidal lows and you’ll probably fall into the 1 in 4 statistic unless you take the medication which makes you feel no emotion. If you imagine missing feeling sad, it’s the only thing worse than pain.”
So, it’s very hard for people to comprehend.
After a lifetime of building your identity, your place within humanity, you’re suddenly told that you are a defect of humanity. And to know that you’re not going to be the person you used to be and that you’ll at best be able to get by is … is life shattering. And the only labels you have to choose from are some kind of a disorder, Manic-depressive or Bipolar. So you scrape through every clinical book trying to look for answers. That’s exactly what I did. Peeling through these books which were these diagnostic, medical texts where I felt like I was under a microscope and someone in a lab coat was judging me.”
Paul Dalio came across a book by Kay Redfield Jamison who is a world authority on Bipolar Disorder by way of having the illness and being a Professor in Psychiatry. The book is called “Touched with Fire”. He went on to write and direct a film by the same name.
Most life assurance providers exclude suicide within first year of the policy.
A benefit scheme run by Utility Warehouse is called Bill Protector. It’s for Utility Warehouse customers, and basically between £2-9 per month added onto your premium. This gives cover for your bills should you lose your income due to illness, injury or redundancy. There is also an accidental death cover.
The illness cover excludes mental health. The basis of this is because it’s ‘hard to prove’. The attitude of the underwriters seems to be that people could go to their GP and simply say ‘I’m depressed’ when they’re not and be signed off work. This is in part due to an industry-wide attempt to combat insurance ‘fraud’.
It is interesting that mental health was covered until July 2016 and then they decided to write it out.
What annoys me most is that this is sold to customers as cover for bills in the event of illness, and then when they call to make a claim, they’re essentially told that their mental health difficulties don’t qualify as an illness – it’s the same old issue of perceptions and attitudes towards mental health. I think if there are going to be any restrictions like this, it should be made abundantly clear.
We as a society treat mental and physical health just the same. Don’t we?
“More people are being detained by police under the Mental Health Act as Psychiatric services struggle to cope” says Jacqui Wise in the cover story of the British Medical Journal of 18th March 2017.
Statistics tell us that deaths in custody are up by 21%.
Self-inflicted deaths are up by 13%.
In the female estate, the number has doubled from 4 to 8 in this 12 month period.
Self-harm incidents up by 26%.
Individuals self-harming up 23%
Assaults up by 34%.
Assaults on staff up 43%.
Natural cause deaths up 17%, explained by the ageing population.
5 apparent homicides, down from 7 in the same period of the previous year
Could there be a co-relation between the facts stated in the first and the second paragraph?
“The police to an extent have always been used as an emergency mental health service” says Michael Brown, a police inspector. He adds that police receive little formal training in managing patients with mental health problems. “A highly agitated person may be experiencing Serotonin Syndrome due to the mismanagement of their antidepressant medications. The signs are subtle and most police officers won’t be able to pick up on that. We need to have a proper debate about the role of the police in this area.”