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‘The Whole System is Rigged’ Part 1

This blog is based on my observations and experiences whilst working in the health sector for the last 16 years.

We live in a strange world, a world apparently hiding under a facade of humanity. Where it wants you to be human but creates a system which doesn’t allow you to be one. 

Buried under red tape, paperwork and checklists; we are programmed to be robots not even androids

A system where, in order to help another human, you have to jump a few hoops. 

A system that tells you to help others but doesn’t allow you to, by creating bureaucratic boundaries so high that its unimaginable to surmount it.

In my profession/work as a Psychiatrist, I have come across vulnerable people, homeless people but housing won’t help, hungry people but food bank would not provide, penniless patient but no petty cash to buy them a meal.

onsequatur?

I have experienced situations where mothers with young children are allowed to live in dwelling with children without basic necessities.  When referred to Social services, it takes months just to make their way in and their excuse, we were not allowed in.

I have been in situations where I have to shout, plead, beg and assert people in the organisation to help my patients, sometimes I am successful and sometimes I am not. I have noticed that people have become so professional, so by the book, with a checklist, so compliance focused, that the human element is lost in translation. They forget that the system was created to help people and not crunch numbers. 

As a Doctor working in the Health Sector, whenever I read the annual report of an NHS Trust or peruse their website, the most prominent thing is their ‘Values,’ values that extend from humanity, respect, partnerships, collaboration, compassion but in reality, they seem to be mere fancy words with minimal applicability, and virtues followed are far from it.  Our systems in their existence thrive on dividing, power gathering, scapegoating, bullying, micromanaging and narcissism.

Why is NHS underperforming? More people are starting to ask this question. Is it the lack of resources? lack of structure? lack of workforce? or the wrong motivators or drives? Or is it Leadership? Leadership is one aspect where I have witnessed it lacks the most. In the NHS, it is a concept which is so misunderstood, and its application flawed.

Leadership entails  leading people with a vision, with respect, selflessness, humility, candour, compassion, transformation with patient-centricity; however our current systems lack these elements.   Instead, the workforce is pushed, invalidated, inadequately trained, improperly coached, dysfunctionally mentored creating a system which is at the brink of a collapse.

We are pushed ‘to do more’, when this is raised as an issue, resilience training is offered and then again, we are pushed ‘to do more,’ rather forced to do more; burdened with massive workload, covering extra domains and forced to embark onto dangerous practices.  The workforce is not cared for, yet are expected to perform above and beyond.

Patient-centricity is a big issue. Our services are not patient-centric nor are our processes, it dwells on refusing rather than providing care. Health has become a corporate sector with an embedded callousness. People have become numbers, problems have become labels, and illness have become a stigma.

Systems are aligned at passing the buck. NHS partners like police will refuse to bring in a section patient who has gone AWOL from the hospital, saying it’s not their responsibility. Social services will refuse to intervene with young mothers with children, saying they don’t have access. Housing refuse to give abode to rough sleepers saying they are addicts, addiction is an exclusion criterion on council’s housing lists. Unwell patients are left without a framework because clinicians are not willing to take responsibility.

Some people working in the health sector thrive on challenges; but soon realise there is no solace as the whole process is fixed. Some succumb to it; some accept it as a norm. Those who pick a fight run out of gas soon.

In my first year as a consultant psychiatrist, working in a community team , I decided to connect  with my patients using music. 

I used to keep an acoustic guitar in my office, used as a prop to engage patients in talking about their interests, so many of them asked to play some tunes, a song writer got her niche back, a grieving friend asked me to play a tune for her and then played a tune for me.  A person with PTSD and Generalised anxiety got the  strength back and started performing in the gigs, a thing she used to enjoy. 

I knew I found a novel way to help patients recover and rehabilitate. 

I along with a support worker  thought of creating a ‘Music support group’ for patients , we drafted a proposal and presented it to the Lead, however the response we got  was something that totally took us by surprise, ‘so now you want to play guitar in your spare time at the expense of the Trust,’ and the proposal was binned.

We are in a system, where an outlier is considered insanity, where innovation is a fool’s rush, where challenging the system is causing obstruction. In order to bring about a change, one has to be part of the system, however the resistance to change becomes steeper as one moves up the hierarchy.

How can we clean up the system when everything around is rigged?  Or can we?

It will be discussed in my next blog, stay tuned…. 

THE ASD DIARIES -‘WILL HE EVER TALK?’

When I embarked on this journey on the 19th of December’ 19, to my first TEDx talk In Lahore, little did I know that it won’t be the highlight of my trip? There was something else in store for me, which would sweep me off my feet and introduce me to myself.

I had been preparing for my talk for over 3 months, I packed up my bags and headed towards Lahore, my whole family was planning to be there to attend the event.

I had a hectic trip, 2 nights in Lahore. followed by a couple of nights in Islamabad which included a clinic day for ASD assessments, in Islamabad. Then a night in Dera Ismail Khan, to attend my cousin’s marriage and back to Islo (as we refer to Islamabad) for a physical health Check-up, a few more ASD assessments and an awareness seminar on ASD. All in a 7 day trip to Pakistan.

I hardly spent any time with the family, so for the last two ASD assessments, I decided to have the assessments in the newly refurbished study of mine, purpose-built for this type of work. 

The two assessments I had arranged at home, was of the same family; two brothers, one over 18 years of age and the other one was about 13. 

Their father was a Retired Army officer, an engineer in Rawalpindi who was doing a PhD in Electronics. Mother was a teacher in Lahore, managing 4 kids, two of them having a diagnosis of autism and two girls who helped the mother extensively.

A unit split by 400 kilometres to fulfil the needs of the family as a whole. Whilst listening to the parents, I came to know that both boys had been assessed and managed in Autism centres with little education for parents. They had self-taught as they had a background in education.

The whole experience was overwhelming, listening to their struggles as parents and the tales of mismanagement of their kids took me on an emotional roller coaster, seeing their journeys, financial constraints whilst still keeping a smile on their faces.

I was already distraught by the stories I heard at the seminar, this 1:1 interaction with the family made me reflect on the practice, ethos and integrity of us professionals, and the difficulties the families have to face and the turmoil the kids have to go through when not knowing the obvious. 

What was happening to me? This trip to Pakistan, this hectic trip is changing perceptions about my priorities, I was lost in my thoughts as I guided the young boy and the mother back to the Reception Room.

I had briefed both the parents about the plan, as I was talking to the father, the younger of the two sisters approached me. She came close to me, there was an emptiness in her eyes, trying to say something and then whispered in my ear an enquiry, a concern, a complaint, ‘Will he ever talk again? ‘Can his autism be cured’? 

I was left speechless, flooded by emotions, I wanted to cry my heart out, to hold her hand and tell her that everything is going to be ok (a statement we always use when giving the person a false reassurance) I replied, and my voices seemed to be coming from a deep well, ‘I don’t know Beta but I can assure you that I will do my best to help him.’

Once the family left, I noticed tears trickling down my cheeks, I sat there for an hour not thinking too much, just repeatedly having the image of that young girl and her enquiry, her concern, her worries, her complaint. 

I started questioning myself, ‘What prompted her to ask me that question?’

‘No one ever asked me this’ The incident left a deep impression, a big crater, I was so touched by her question that every time I repeated the conversation in my head, I became tearful. 

It also made me reflect on how ASD and Intellectual disability affects families especially in the cultural context of Pakistan. 

I have heard really disturbing stories around the care of children with ASD. 

Husbands have left their wives on being made aware that their children have autism. Schools have expelled children on knowing that kids have ASD. Teachers encourage families to take their smart kids to special schools where they are lost forever.

I see families blaming mothers for their children’s ASD. 

Families are excluded from birthday parties, family functions and closed gatherings. 

They are challenged in terms of finances, as ASD Assessments are done privately in Pakistan and are beyond affordable. I have observed poor skillset amongst untrained staff that impacts the management of these kids. 

Lack of Parental Training for ASD leave the parents clueless, it’s difficult to unlearn bad techniques thereafter. 

I realize that there is a big gap for Autism spectrum disorder, there is a lack of skillset, awareness and a direction regarding its Management.

The question is how an individual can make a difference? I am a believer that by helping one person, you are helping a generation; if we work using this premise, less will become more.

The important thing is taking the 1st step, the outcome of that lies with how motivated and driven we are. Sometimes just one moment, one word, one phrase, one gesture can escalate a process just like in my case, just one sentence by a young sensitive caring sister ‘will he ever talk’ changed the landscape of my priorities.

Adult ADHD & Early Intervention!!!!

I remember my first public humiliation in 2006 when I presented a study about Adult ADHD to the Research Ethics committee in Lincolnshire, one of the psychiatrists on the panel got up and after scornfully looking at me said, “Adult ADHD is a scam’ it doesn’t exist. I was utterly taken aback, and those thoughts ruminated in my head for years to come. 

Fast forward a few years, and I see myself in a Locum consultant role where I was offered to lead a team and pioneer service for Autism Spectrum disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) for adults. I have learnt one thing, and that is never to say No to a good opportunity, I accepted the job in an instant, and that was the turning point of my career.

It was as if someone had just introduced me to a completely different but fascinating world. There was so much learning, unlearning, unravelling and exploring. It changed my perception about mental health and helped me think beyond the familiar realms of psychosis, mood, anxiety and personality disorder. It was as if Universe wanted me to have a third eye or a 6th sense. It was an evolution, metamorphosis beyond anything that I had ever experienced. 

Working in Home Treatment teams has its perks; I have been in 5 different Home treatment teams Nationally; it suits my learning style, which is predominantly an Activist. It also provides me with the opportunity to see a diverse presentation of people with mental health issues, adding to my skillsets and help me develop extra facets both as a Leader and a doctor. I made use of my skillset and realised over a while that at least 1/4th  to a 1/3rd  of those cared by Home treatment teams are undiagnosed ADHD.

What’s ironical is that it can only be diagnosed and treated by a specialist service, even if non-specialist service diagnoses the person, they cannot initiate the medication. What’s more mind blogging is that some areas do not have a specialist Adult ADHD service, even if they have, the waiting time is such that those patients with undiagnosed ADHD fall through the net and are lost to the system. Waiting lists that start from 2 years can be as long as ten years. It’s like not having a service at all, and the system doesn’t seem to be bothered about it. 

I remember sitting down for an interview for a Speciality doctor post in 2008 in Trafford, when they asked me my perspective about specialist services. My reply was that we unknowingly are deskilling the workforce by creating specialist hubs which should be part of a conventional secondary care mental health service. I did say that it will deskill the next crop of the psychiatrist in a lot of critical and significant areas. The interviewer later came to me and applauded me for my insight. I see that insight turning into reality now, every single day. 

In our communities, the prevalence of Schizophrenia is 1-1.2%, all the services prioritise psychotic disorders, including the Community mental health team(CMHTs). We have inpatients prioritising patients with a psychotic disorder and then have the specialist services like Early Intervention in Psychosis or previously disbanded services like assertive outreach team all prioritising the 1% of the population. On the other hand, ADHD has a global prevalence of 4-6%; guess how many services there are to cater to them, just one and that too, with a never-ending waiting list. A 4-6-fold burden of disease with very few  to understand them and look after them. 

There are rarely any transition services from CAMHS and mostly diagnosed ADHD CAMHS patients fall prey to the lack of transition services and come off ADHD medication. Multiple unfavourable outcomes mar the cohort; a big chunk of them start using recreational substances to cope, leading to criminality.

According to different studies done on the  Prison cohort, the estimate includes 30-40% undiagnosed cases of ADHD; besides, 10% of those with addiction issues are undiagnosed too. In the community, they are misdiagnosed with Anxiety disorders, Emotionally Unstable Personality disorders, Addiction issues, Anti-social Personality disorders, or labelled as feral youth.

What needs to be done?

Our CCGs, GPs, secondary mental health services and emergency medicine need to develop a skill set to help diagnose and manage these patients effectively. CMHTs should start to assess these patients, initiate the treatment and provide a follow up till they are stable, they should be able to differentiate between EUPD and ADHD to prevent misdiagnosis. 

There is a need for Early Intervention services for ADHD in adults; this service will prevent people from being lost to the system in a brief period. It will help organise their lives, prevent criminalities hence preventing the excessive use of resources like Police, Emergency department, Prison services, social services, Criminal Justice system and so forth.  

If we start thinking of an Early Intervention in ADHD, we will reap its long-term impact reducing the burden on the person, community and economy. However, this is unachievable unless we embark on an awareness drive in the community, in reaching the neighbourhood, schools, colleges, universities etc. 

It all should start at the grass-root, educating professionals especially from mental health services to spot, diagnosis and manage the condition. One important area is training to teach Psychiatric nursing and medical trainees of this disorder.

There is hardly any curriculum catering to these needs. How do we expect an efficient service without providing the workforce with the relevant toolkit? There is only a handful of professionals with the skillset, which they have developed on their own accord. 

Before concluding the blog, let me educate you about ADHD. It stands for Attention deficit hyperactivity disorder. The symptoms are categorised under a triad of hyperactivity, impulsivity and inattention. 

DIAGNOSTIC CRITERIA ACCORDING TO THE (DSM-5)

1.     Inattention: Six or more symptoms of inattention for children up to age 16 years, or five or more for adolescents age 17 years and older and adults; symptoms of inattention have been present for at least 6 months, and they are inappropriate for developmental level.

o   Often fails to give close attention to details or makes careless mistakes in schoolwork, at work, or with other activities.

o   Often has trouble holding attention on tasks or play activities.

o   Often does not seem to listen when spoken to directly.

o   Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (e.g., loses focus, side-tracked).

o   Often has trouble organising tasks and activities.

o   Often avoids, dislikes, or is reluctant to do tasks that require mental effort over a long period of time (such as schoolwork or homework).

o   Often loses things necessary for tasks and activities (e.g. school materials, pencils, books, tools, wallets, keys, paperwork, eyeglasses, mobile telephones).

o   Is often easily distracted

o   Is often forgetful in daily activities.

2.     Hyperactivity and Impulsivity: Six or more symptoms of hyperactivity-impulsivity for children up to age 16 years, or five or more for adolescents age 17 years and older and adults; symptoms of hyperactivity-impulsivity have been present for at least 6 months to the extent that is disruptive and inappropriate for the person’s developmental level.

o   Often fidgets with or taps hands or feet, or squirms in seat.

o   Often leaves seat in situations when remaining seated is expected.

o   Often runs about or climbs in situations where it is not appropriate (adolescents or adults may be limited to feeling restless).

o   Often unable to play or take part in leisure activities quietly.

o   Is often “on the go” acting as if “driven by a motor”.

o   Often talks excessively.

o   Often blurts out an answer before a question has been completed.

o   Often has trouble waiting their turn.

o   Often interrupts or intrudes on others (e.g., butts into conversations or games)

In addition, the following conditions must be met:

·       Several inattentive or hyperactive-impulsive symptoms were present before age 12 years.

·       Several symptoms are present in two or more settings, (such as at home, school, or work; with friends or relatives; in other activities).

·       There is clear evidence that the symptoms interfere with, or reduce the quality of, social, school, or work functioning.

·       The symptoms are not better explained by another mental disorder (such as a mood disorder, anxiety disorder, dissociative disorder, or a personality disorder). The symptoms do not happen only during the course of Schizophrenia or another psychotic disorder.

Based on the types of symptoms, three presentations of ADHD can occur:

·       Combined presentation: if enough symptoms of both criteria inattention and hyperactivity-impulsivity were present for the past 6 months

·       Predominantly Inattentive Presentation: if enough symptoms of inattention, but not hyperactivity-impulsivity, were present for the past six months

·       Predominantly Hyperactive-Impulsive Presentation: if enough symptoms of hyperactivity-impulsivity, but not inattention, were present for the past six months.

ADHD and co-morbidities, it can co-exist with Emotionally Unstable Personality disorder (EUPD), Autism Spectrum disorder (ASD), Anxiety disorder, Depression, Psychotic disorder, addiction and Anti-social personality disorder.

One of the Red flags is a patient with multiple diagnosis in a short timeline, with none of the interventions offered (both pharmacological and non-pharmacological), providing any respite. 

There are screening tools like ASRS, Connors, which are commonly used and then there are diagnostic tools like DIVA 2.0, ACDS, BADDS.

The mainstay of management is predominantly medication.

–       Stimulants: Methylphenidate, modified amphetamines, Preparations are available as an immediate and slow-release

–       Non-stimulants: Atomoxetine, certain Tricyclic antidepressants (desipramine, amitriptyline), Bupropion, Venlafaxine too

•       Psychological therapy: Behavioral therapy, also dependent on co-morbidities

It is one Neurodevelopment disorder with an excellent prognosis; it changes a person’s life proving respite, however is dependent on the timeline of intervention, the earlier, the better. 

Please feel free to contact me if you have any queries…