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.”
Megan Clark is 19. She came out of anonymity to speak in support of the statement made by the judge on her rape case. Judge Lindsey Kushner, while sentencing the rapist, advised young women that they risk rape if they get drunk. It is well known that drinking seriously impairs judgement. Drunk young women make themselves very vulnerable. They are less likely to be able to defend themselves, remember the events correctly or be believed.
The judge’s statement was interpreted by some as ‘victim-blaming’.
I think it’s common sense. I have great admiration for this young girl for coming forward and speaking from her experience. It must have taken courage.
In no way does it absolve the attackers of what they did.
It’s about taking care of ourselves. The lessons are there if we are willing to learn. It’s much better to learn from other people’s mistakes.
In an ideal world no one would steal, rape or cheat. In the real world they do. That is why we lock our doors, install burglar alarms and have heavily protected bank accounts.
Freedom comes with responsibility.
There is mountains of evidence to say that there is a significant increase in mental illness in women who have been physically or sexually assaulted in childhood and adult life. The harmful effects of abuse can continue to contribute to psychiatric illness for many years.
“I have opened a door that can never be shut. How will I ever get her to trust me again?”
19 out of 20 people who attempt to end their lives will fail.
These survivors will be at a 37% higher risk of suicide.
Anger, shame, guilt, fear, minimization and avoidance are few of the reactions they evoke.
The taboo associated with the act might make them feel even more isolated. Their families may not know how and where to access support for themselves and their loved one. The ones closest to them may feel drained, stressed, exhausted and let down. The trust between the two might be deeply damaged.
Their relationship might reach an all time low, just when it needs to be solid.
Both need to take responsibility for their own well-being and that of each other.
“Terrible poverty causes brain damage”, says Charles Nelson, a professor of neuroscience and paediatrics at Harvard Medical School.
In 1989, when the communists were overthrown in Romania, 170,000 children were abandoned and were living in government-run institutions under very poor conditions. Nelson and his team started studying them in the late 1990s. They found that the kids were deprived of key experiences during critical periods of development. Babies lay in cribs for their first year or more and their visual experience was limited because often the ceilings were painted white. There was no one to talk to them and care-giving was limited, so they were deprived of psychosocial stimulation. Their physical growth was greatly stunted too. The kids were very very small.
“We had a rule: no crying in front of the kids. But I can’t tell you how tough it was.”
The team wanted to find out if high-quality foster care for these kids could rectify the negative impact of poverty they might have. They recruited a sample of 136 kids, from 6-31 months of age and randomly assigned half of them to high quality foster care. The other half remained in institutional care. Foster parents from Bucharest were volunteers who had been intensively screened and interviewed. They were paid a small wage and provided with material support such as toys and diapers. The families were closely monitored by social workers.
Two years into the study they found that across the board, the kids in institutions lagged behind in language development, IQ and mental well being. The prevalence of anxiety and depression were reduced no matter how old the kids were when they were placed in foster care.
They are now about 16 years old. Those in institutions are starting to experience significant mental health issues such as psychotic disorders and paranoia. 20 of them showed a sharp drop in IQ from the age of 12.
One year following this research, the Romanian government passed a legislation banning the institutionalisation of children below the age of 2 years unless they were severely disabled. They also started government foster care.
This is a classic example of science giving rise to political will to improve lives of kids.
UK’s Child Poverty Action Group reports that 3.9 million children in this country live in poverty at present. This means more than one in 4 children are growing up in families with less than 60% of the median income. In the US, 15 million children live below the poverty line. Western levels of poverty may not be anything close to the hardship endured by many in developing countries but it has long lasting detrimental effects on the physical and mental health of children.
With a strong political will, child poverty can be alleviated but despite setting goals and targets, our government is spectacularly failing to deliver. Dealing with child poverty and its life long consequences is not a matter of political choice but that of moral duty.
(A sculpture by Ruth M, who lived with Bipolar Disorder, expressing her depression)
In the 1940s, mental hospitals were places of isolation and confinement, probably closer to prison than hospital. Netherne, in Surrey was seen as a progressive asylum at the forefront of waves of reform and development for nearly 50 years, till the eventual closure of the British asylums. They enthusiastically adopted physical treatments, now viewed as barbaric- insulin coma therapy, electroconvulsive therapy and lobotomy, then seen as optimistic approaches to treatment.
Edward Adamson (1911-1996) was a pioneer of British Art Therapy. He encouraged and collected the paintings, drawings and sculptures by people compelled to live in Netherne Hospital between 1946 and 1981. He describes that many people who came to his first lecture there had shaved or bandaged heads, bruised faces and black eyes, following brain surgery.
Adamson started collecting art during his early visits when a man on a locked ward gave him the first of his several drawings done on toilet paper with a charred matchstick. He later met other people on the wards who would have had no personal possessions, working with whatever materials they could find to create something for themselves.
The Adamson Collection has 6,000 of these works of an estimated 100,000 when he retired. The collection is seen as unique in the history of art therapy of the reforming psychiatry of the 1950s and 60s, collected by an artist rather than a psychiatrist, with a strong representation of works by women. Above all it is a memorial to all those who suffered in the asylums and to the human need to express.
“Edward Adamson practiced art as healing before there were ever terms or labels like ‘Art Therapist’. Being with him for anyone was therapy and yet he didn’t play at clinician, but rather served so sweetly as a supreme friend, ‘there’ for those who had none other. There were for Edward no patients. I think that is why so many lost people in his care found their way back to themselves. Adamson’s was an alchemy of the highest sort.”
– Rebecca Alban Hoffberger, Founder/Director American Visionary Art Museum, 2011