At the Delhi International Airport, leaving home, I usually am sad to be leaving my folks. But on this occasion I felt like an uplifted version of myself. Positively happy. Buzzing. Most uncharacteristic. Something was not right, if you know what I mean. I thought back to what had gone on in the few preceding hours. Well, the only new thing was that just before leaving home, I had a glass of ice-coffee that my Mum had made for us. It was most welcome on a warm day like that. That was the first time I had coffee in more than 10 years.
Here was my answer. Saagar used to love Mocha Frappucino. I thought it was just the sugar hit he liked but now I know it is a combination of the coffee, the coolness and the calories. For some, the cream on top. I had just found a ‘back-up’ plan for my blues. It was a tried and tested remedy.
Since last weekend the temperatures have completely justified a generous dose of ice-coffee and we’ve indulged every day.
This is how we make 2 glasses :
Medium strength coffee: 200 mls
(While hot, dissolve 2 heaped teaspoons of dark muscavado sugar in it and allow to cool to room temperature)
Cold Milk: 1 glass
Ice cubes: 14-16
Blend the coffee and sugar mix in a blender.
Add the milk. Blend again
Add about 12 ice cubes. Reblend.
Pour into 2 tall glasses and add the other 1-2 ice cubes in each glass.
For extra luxury, add cream or vanilla/chocolate ice-cream to the mix.
If you drink properly, you can even get yourself a nice moustache. I am hooked. Can hardly wait till tomorrow.
(I am not going to be a numpty and post a picture of ice-coffee. I think everyone knows what it looks like.)
‘Art should comfort the disturbed and disturb the comfortable.’ – Cesar A. Cruz
Yesterday’s play on ‘Shifting perspectives’ through theatre and today’s trip to the Dragon café brought this truth home.
The work done by the patrons of the Dragon café was compiled into a big black book called ‘Artspace’. Looking through it was an immersive experience. Some brought me comfort and some disturbed me, making me a mixture of ‘comfortable’ and ‘disturbed’.
I shall let you find out how they make you feel.
Certain events or times of day are more difficult – like being alone late at night, or having arguments. During these times it can often be more difficult for us to feel a sense of hope, to feel connected to the idea of safety, to feel our own resilience. This is the times when ‘self-care’ is essential – taking time out to be kind to ourself, to find activities that feel good, or allow us to connect with ourself again. Self-care is about caring for ourself, inside and out.
Focusing on the present moment, the present activity, whilst allowing thoughts and feelings to just be – has a long history of helping people with their mental wellbeing. By allowing ourself to become absorbed in the moment it’s possible to feel a sense of calm and focus that can distract from painful thoughts and feelings. No wonder colouring books for adults and kids alike are taking a special place on book store shelves.
One of the actors at the above workshop, who is also a mentally ill patient in recovery spoke about his insights, “I realised that as long as I depend on the State to look after me, I will be met with the lowest common denominator. This brought me to the conclusion that I may not have control but I have agency.”
After I got home, I looked up the meaning of ‘agency’ to figure out exactly what he meant. Agency is an ‘action or intervention producing a particular effect’. For example, many infectious diseases are caused by the agency of insects. Synonyms to this effect are: influence, power, effect, force, means, channels, routes, mechanisms and techniques.
In effect, he was referring to ‘self-help’. He was saying, “I have the power to change my situation.” It was inspiring for me to hear him say that. That statement reinforced the message of the workshop – there is a very thin line between the well and the ill. Role reversals are common. Sometimes visible. Often not.
I came away from there with a mixed bag of feelings. On the one hand, I could clearly see the daily struggles of mentally ill patients and on the other, their brilliance shone through. I wonder how Saagar would have been, had he got through that big dip.
NICE guidelines on ‘Bipolar Disorder in Adults’ regarding the role of families and carers state:
“Quality standards recognise the important role families and carers have in supporting adults with bipolar disorder. If appropriate, health and social care practitioners should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care.”
“Why is it that some psychiatrists sometimes don’t fully appreciate the views of carers and involve them in the care of a patient when NICE guidelines clearly state that it should be otherwise?” I asked a senior psychiatrist casually during a recent conversation. “Traditionally” he said, “doctors were sons and daughters of doctors, their friends and spouses were often doctors and those were the people they spoke with. Carers didn’t fit into that box. It’s a cultural thing, still lingering. Hardest thing to change – a mindset.”
India gets criticised for its caste system. In other countries it exists in other forms – the power dynamic between different groups of people in different strata of society. As the Grenfell tragedy unfolds, I see how the management didn’t take the resident’s concerns seriously. What is the nature of Tenant-Management relationship? Who is disadvantaged?
Any number of guidelines cannot change deep-rooted, unconscious biases. Only humanity can.
Mrs May visited the site but couldn’t speak with the residents for ‘security’ reasons and because she is very tired after her recent election campaign. Being with them would have taken compassion. And humanity. I wonder if this was a Mayfair tower wether she would have felt more secure and less tired.
20 residential levels
4 mixed levels of community areas and residential flats
2016 refurbishment completed
The tower was built in 1974. It was recently made to look pretty for £8.6 million pounds. Lower 4 floors were remodelled, creating nine additional homes, better heating and communal facilities.
1 am, Wednesday, 15th June : A fire started at the 4th floor and rapidly engulfed the entire tower. Source unknown.
No alarms. No sprinklers. No warning.
40 fire engines and 200 fire fighters.
More than 24 hours to bring the blaze under control.
17 reported dead so far. Count rising. Many hospitalised. Many missing.
Heart-rending stories of people trying to save their kids and themselves in any way possible. Firemen and women traumatised by what they saw. Families distraught. Neighbourhood shattered. London shaken.
Previous warnings by residents ignored. False assurances given.
All to do with money. Cheap material used for encasing the building. Each unit not adequately isolated.
Recommendations made by inquiries into similar previous fires not implemented. All to do with money.
Our country cannot provide its citizens with proper medical care, education or housing. First world country?
This is what it must be like in countries like Syria, Yemen and Lebanon where every day, unmanned drones drop ruinous bombs on innocent unsuspecting civilians. We are all the same people.
We don’t need aliens. Thank you. We are clever enough to self-destruct.
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.
Q: I don’t see how I can be free now. As it happens, I am extremely unhappy with my life at the moment. This is a fact and I would be deluding myself if I tried to convince myself that all is well when it definitely isn’t. To me, the present moment is very unhappy – it is not liberating at all. What keeps me going is the hope or possibility of some improvement in the future.
A: You think that your attention is in the present moment when it’s actually taken up completely by time. You cannot be both unhappy and fully present in the Now.
What you refer to as your ‘life’ should more accurately be called your ‘life situation’. It is psychological time : past and future. Certain things in the past didn’t go the way you wanted them to go. You are still resisting what happened in the past and now you are resisting what is. Hope is what keeps you going, but hope keeps you focussed on the future. This continued focus perpetuates your denial of the Now and therefore your unhappiness.
Q: It is true that my present life situation is the result of things that happened in the past, but it is still my present situation, and being stuck in it what makes me unhappy.
A: Forget about your life situation for a while and pay attention to your life.
Q: What is the difference?
A: Your life situation exists in time.
Your life exists now.
Your life situation is mind-stuff.
Your life is real.
Find the “narrow gate that leads to life.” It is called Now.
Narrow your life down to this moment. Your life situation may be full of problems – most life situations are – but find out if you have any problem at this moment. Not tomorrow or in 10 minutes, but now. Do you have a problem now?
When you are full of problems there is no room for anything new to enter, no room for a solution. So, whenever you can, make some room, create some space, so that you find the life underneath your life situation.
Use your senses fully. Be where you are. Look around. Just look, don’t interpret. See the light, shapes, colours, textures. Be aware of the silent presence of each thing. Be aware of the space that allows everything to be. Listen to the sounds: don’t judge them. Listen to the silence underneath the sounds. Touch something – anything – feel and acknowledge its Being. Observe the rhythm of your breathing : feel the sir flowing in and out, feel the life energy in your body. Allow everything to be – within and without. Allow the ‘isness’ of all things. Move deeply into the Now.
-An excerpt from “The Power of Now’ by Eckhart Tolle