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The Royal College of Psychiatrists Improving the lives of people with mental illness

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19/01/2017 10:56:15

My experience of Core Training in Psychiatry as a disabled medical doctor

When you have been what you could describe as a successful highly regarded and rewarded medical doctor, the immediate realisation that there is something substantially wrong going on with your brain, puts you in a difficult place. If you are a good doctor, you immediately realise the severity of your problem, but at the same time, you know that you are not supposed to diagnose yourself.

That was my experience when one day I went to work and realised that numbers did not make any sense to me. Numbers had been, apart from medicine, my passion in life. They had always made sense to me even after they were processed with difficult complex models. I was able to perceive inconsistencies or anomalies rapidly even in national datasets. Suddenly, I could not think how one plus one made two, or how much the change needed to be in the coffee shop. Apart from that, I started feeling extremely tired and was unable to sleep.

After normal blood testing, I was told that I was likely to have Chronic Fatigue Syndrome (diagnosis by exclusion). I was referred to the specialist service and this was apparently confirmed. Particularly because after one year, one day, I could not make sense of words when I was reading, watching TV or talking to people. By the time my brain was processing the first sentence in seconds to pass to the next one, I had already forgotten what the first sentence was about. I could not name objects and everything became “a thingy”. I spoke with my very supportive family about the possibility of an early Alzheimer’s.

At that time, I was working in Public Health and my trainers could not understand and definitely were not very sympathetic. They were different harder times for disabled people. The need for reasonable adjustments was considered to be an allowance that should not be available for doctors, as if the world and the profession was dependant on our all perfect brains and functions.

My original problems improved progressively, but they never went back to baseline. I am able to work with numbers again, but I do not have the extra sensitivity that I had in the past. I have been told that I suffer of a newly developed dyslexia that affects in particular my phonological awareness. This has direct influence in my pronunciation of words in any language.

It was six years after I experienced the first symptoms that I was diagnosed with a Meningioma. The size of the Meningioma never explained the symptoms. However, I have other neurological problems and perhaps one of them, or the effect of the combination has caused the “unexplainable symptoms”. A neurologist once told me that I had been really unlucky because I have several neurological conditions that would rarely happen in the same person.

In 2014, I was told that I required surgery of the still growing Meningioma because I started experiencing olfactory hallucinations. The very successful surgical procedure took place at Queen Square in January 2015. Thanks to my very skilful neurosurgeon and his team, there were no serious complications and two months after the procedure I was ready to go back to work. After the surgery, some of the unexplainable neurological symptoms started fading. The Neurosurgeon has recently explained to me that it is likely that the tumour had been causing some level of inflammation in the brain and in consequence the symptoms that have started to disappear.

I still have other neurological problems, and after the surgery I started feeling even more tired than before. I am still unable to drive long distances or time. My swallowing difficulties have worsened and my speech changed as well. Sometimes I am able to see a word clearly in my mind and the pronunciation comes from my mouth with a different composition of sounds. I already was suffering of lack of phonological awareness, but the changes to my voice box in structure (I had a endonasal transcribriform procedure), the constant irritation caused by a fluid of unknown origin, and the constant clearing of my throat, has made my speech occasionally unintelligible. This particularly happens when I am stressed or rushing or I am overthinking what I have to say. The speech and language therapy has assisted me not only with strategies and exercises to make my speech more intelligible, but also to improve my self-esteem and confidence. I require extra preparation for everything that I need to do and say, particularly on more formal sessions or exams. In particular, I need reasonable adjustments and lots of support and understanding to be able to perform at the same level than my peers.

Because my condition is not immediately obvious to others, people can be sceptical when I need adjustments. They prefer to believe that my speech problems are caused by my Mexican origin and pronunciation.

Moving between placements every six months during my Core Training meant often contact with Occupational Health. Having to set up reasonable adjustments so frequently does cause me a fair amount of stress, and obviously results in discussing confidential details with lots of different people.

 

Moving from Public Health into Psychiatry

When I was told that I had a benign brain tumour, the first thing that came to my mind was relief, not only because perhaps now I had the explanation for my symptoms, but also because it was not malign. My grandmother died because of an Astrocytoma.

It is in moments like this that you need to stop and reflect about your personal and professional life. I could not see myself practicing a Specialty in which the contact with patients (because of the way in which it is organised in this country) was rare. At the end of the day, the patients were the reason for me to become a medical doctor. After a career break, I made a decision to retrain in a speciality that was more suitable. I was very fortunate to secure a locum appointment for service post in Psychiatry and later a Core Training post.

 

My working place at Leicestershire Partnership Trust (LPT)

Working as a doctor with a disability, and also with extensive experience of being a patient has hopefully made me a better, more compassionate doctor.

It was a God’s blessing to have found a job at Leicestershire Partnership Trust (LPT) after my career break. I am sure that this Trust is not unique in terms of its compliance with the responsibilities associated with the Equality Act. However, having worked as part of the Equalities team gives me the insight to say that this Trust has been always in the leading position, investing time and effort in equality aspects. LPT always moves many extra miles if this is going to benefit its patients or members of staff.

The adjustments provided were numerous and they changed over time depending on my additional needs.

While not everything has always gone perfect when discussing reasonable adjustments, this is not because of the lack of policies, information or training. It has been because some human beings, including doctors may still believe that the medical profession has been made for the perfect unspoiled people, and disabled people and reasonable adjustments do not have a place in the same page as medical training.

LPT heard my concerns when things did not go well, and has acted upon my complaints when members of staff considered themselves above the national or international mandates.

My experience at LPT was most of the time more than positive. My trainers and supervisors have seen above my disability. They have appreciated the ability behind the disability, and have supported me to work within the limit and sometimes, when needed, above my multiple abilities, knowledge and skills. Medical staffing was brilliant when sorting out problems derived of the complexity of my needs.

I am grateful and in debt for all the support received.

 

The Royal College of Psychiatrists

I have passed my entire membership examinations; one before the brain surgery and three after the surgery.

I do not know what happen with other Medical Royal Colleges or Faculties at this moment in time, but I am able to say that the Royal College of Psychiatrists takes its Equality responsibilities very seriously indeed.

From the moment that I first contacted the person in charge of the operational aspects of the examinations, I realised how different this was compared with my previous experiences. The operations officer was always compassionate, objective, helpful and effective. At no time I felt that I was a burden to her and the logistics or the College. In the opposite direction, I always felt heard, appreciated and helped by the Examinations Unit and all the Chief Examiners in post during this period.

Most of the members of staff do not know and did not have to know the particularities of my disability, but they were always open to the unknown and also keen to assist. I prepared really hard for my exams; at least as hard as many other trainees or candidates that have passed the exams. However, I am 100% sure that if it has not been because of the reasonable adjustments that the Royal College put in place, I would not have been able to pass the exams, due to the long lasting substantial disadvantage I am placed due to my disabilities.

Each single candidate has specific needs, so it is not adequate to list all the different adjustments that the college put in place, but I can say that they rebalanced the disadvantage caused by my disability.

I am not sure how many other members of the college have undergone brain surgery while in training, but my experience tells me that it is not an easy enterprise to deal with within a short period of time without feeling that you are held by a large support network which includes your family, friends and relatives in relation to your personal life. In your professional life, you need an employer as sensitive to equality issues as LPT and a Royal College that will walk the difficult track next to you, putting in place the safeguards that will help you to move forward and reach your dreams regardless of the limitations imposed by a disability.

The main positive outcome in my case is that I managed to stay working within a clinical medical role, and have managed to complete my Core Training and Exams for a specialty that is more suitable for me in the long term. I will be applying for the next position soon and hopefully able to finish my training and become a consultant. If I ever become a consultant, this will be thanks to the coordinated effort I have been blessed with (LPT, Royal College, and any future employer) when I made the decision to start my career in Psychiatry.

05/08/2015 13:58:45

Carers' Assets

Bernard Hart, retired IT Consultant and Magistrate
Member of the Royal College of Psychiatrists Carers Forum

5 August 2015

Losing a carer

 

Guardianship has been a subject the British government has wrestled with for many years and, as far as I know, found no satisfactory solution. The key issue for me is: “What happens to a person with reduced capacity when their primary carer or carers is/are no longer able to care for them either through death or incapacity?”

 

Photograph by Örjan Lindén

There is one school of thought that says the government then has a responsibility for the health and wellbeing of that person. Unfortunately, there is little or no evidence of the government assuming that responsibility under current legislation or guidelines. It is, therefore, left to the carer(s) prior to their incapacitation to make whatever arrangements they can for the welfare of the person they care for. Okay, so you make a will with your cared-for as beneficiary. You may set up a trust with trustees you appoint to administer it to the benefit of your cared-for. Great! All things being equal, this will probably work if you’ve appointed the right trustees; people you trust to work in the best interests of your loved one.

Now, what happens if you, the carer, become disabled. You’ve accumulated a small amount of money that you hope to leave to your cared-for when you’re no longer around. Money that is intended to help him or her with necessities and maybe the odd luxury when you’re no longer able to. Unfortunately, if your savings exceed the relatively minimal amount the government allows, you’ll have to pay for any help you get from statutory agencies such as help with bathing, dressing, keeping your home clean, and this can amount to a tidy sum. Depending on how long you need that help – in many cases, indefinitely or for many years – it will take most, if not all, of your hard earned savings, the money you’ve worked hard to put aside for the long term welfare of your cared-for. Everyone with more than £23,250 has to pay for support. Below that threshold, they contribute to the cost - with the amount paid based on means-testing of both savings and income. Those with savings and capital of between £14,250 and £23,250 have those assets taken into account when their contribution is assessed. Below £14,250, only a person's income is considered.

Of course, there are ways round this, like transferring your savings to your loved ones before you become incapacitated, but that not only pre-supposes that you will have some time to plan, but it is also, to say the least, a risky option for many. For one thing it can leave you without personal resources and your savings could disappear very quickly if put into the care of somebody who has little or no experience of managing money for the longer term. I won’t mention death duties here as this only becomes relevant if you have a significant amount of money to leave behind.

It has been pointed out to me that The Office of The Public Guardian does have responsibility for supervising the affairs of those who do not have the capacity to manage them themselves. However, if you check the Government’s website in this regard, you’ll note that it's all very bureaucratic and impersonal. Not a route I’d be keen to take.

Our current crop of politicians has been waxing lyrical about the need to support carers for some years now, while at the same time reducing the amount of money available for their support. I think it's time we started putting some pressure on legislators to significantly increase the threshold at which carers become liable for the cost of their own care and support.

Authored by Bernard Hart.

28/03/2018 11:18:41

Autism is not over-diagnosed in the UK, says Royal College of Psychiatrists

The Royal College of Psychiatrists, which represents 34,000 doctors around the world, respond to a controversial article in the Daily Mail authored by their former President, which claimed parents chase diagnoses to 'avoid their own failings'.  

“There is only one thing in life worse than being talked about, and that is not being talked about.” In recent times, neurodevelopmental conditions have not had to worry about falling victim to Oscar Wilde’s warning.

 

Former President of the Royal College of Psychiatrists Mike Shooter grabbed headlines recently by suggesting that neurodevelopmental conditions like Autism Spectrum Disorders (ASD), Attention Deficit Hyperactivity Disorder (ADHD) and Intellectual Disabilities (ID) in children are being “vastly, and dangerously, over-diagnosed”. He says that parents are seeking out diagnoses like a “badge of honour”.

 

Rather than allow this to act as a deterrent to anyone thinking of seeking support, I’m keen that this attention should be used to highlight the importance of improved diagnoses and support for people with such conditions.

 

Neurodevelopmental conditions are a group of conditions that are linked to the development of the brain and the effects these have on functioning. ASD, ID and ADHD are the 3 most common examples.

 

First off, with apologies to those of you who need no reminder, I’d like set out what some of these often intimidating neurodevelopmental terms mean:

 

What is Autism Spectrum Disorder (ASD)?

ASD, also known as Childhood Autism, Asperger Syndrome or Atypical Autism is a lifelong neurodevelopmental condition, often diagnosed in childhood.

 

Characteristics vary in each person, but generally people with ASD have difficulties, of different degrees, with communicating, social skills and repetitive behaviours.

 

ASD affects at least 1% of children and young people. 

 

What is Attention Deficit Hyperactivity Disorder (ADHD)?

ADHD is also a lifelong neurodevelopmental condition often diagnosed in childhood. It can present through attention difficulties, hyperactivity and impulsivity.

 

ADHD affects 1-2% of children and young people.

 

Why are claims of over diagnosis emerging?

In the US, more children and young people are diagnosed with ASD and ADHD than would be expected, in comparison to recognised prevalence rates.

 

This may be partly due to how diagnosis criteria are interpreted, with diagnoses rates varying significantly between states.

 

The US insurance-based health care system is also likely to be a factor, as care is only funded if linked to a diagnosis, along with US society’s preference to label behavioural difficulties or normal range differences as neurodevelopmental conditions.

 

But does this hold true in the UK?

On the whole, no.

 

Fewer people are diagnosed than expected, given prevalence rates of such conditions. Rather than a UK epidemic of over-diagnosis, neurodevelopmental disorders are probably being under-diagnosed or are being under-recognised.

 

Absence of routine screening and demand for diagnostic assessments often exceeding the capacity of local services, leading to long waits for diagnosis, are likely to contribute to this.

Diagnoses aren’t straightforward.

 

They can entail a lengthy process, lasting years.  

 

A wide range of evidence should be used, including a history of symptoms, observing the individual in usual settings such as home or school and specialist assessments e.g. speech and language therapy or psychological assessments.

 

Characteristics of people with ASD, ADHD or ID vary by age, developmental level and severity.

 

For example, in ASD, children’s symptoms may disappear when they are supported to manage the demands of daily life. Likewise, symptoms can come to the fore when children are in demanding situations.

 

Under the strain children experience when moving schools, often with little support, it is easy to imagine symptoms of ASD or ADHD becoming more prominent.

 

Given the complexity of such diagnoses, RCPsych recommends that diagnoses are made by child and adolescent psychiatrists and their multidisciplinary colleagues.

 

Are diagnoses helpful? Or are they a “middle-class parent’s way of dodging responsibility for how their child has turned out”?

While UK diagnoses are below recognised prevalence rates, not all children or young people with neurodevelopmental conditions can or should be identified.

 

Some people do not want a label, while others have milder difficulties that can be self-managed or are below the thresholds for a diagnosis.

 

Over-diagnosis of these conditions can occur due to evidence presented being biased towards a diagnosis, or diagnostic confusion because of the presence of other neurodevelopmental conditions.

 

Parents might seek ASD and ADHD diagnoses when they are not the best or only explanation for a child’s behaviours.

 

This is often a result of parents’ and professionals' understanding of a child’s behaviours or the avoidance of stigma relating to other diagnoses e.g. attachment or conduct difficulties.

 

These require management of the wider environment around the child such as parenting, rather than placing the difficulty mostly within the child and their neuro-development.

 

Diagnoses are not a solution in themselves but can lead to support

Accurate diagnoses based upon best available evidence can help explain traits and symptoms and lead to appropriate support.

 

But, a diagnosis of ASD or ADHD is no “way out” for parents, and certainly not for their children.

National Autistic Society research finds only 16% of people with ASD have full-time jobs.

 

More than 60 percent rely on their family for all their financial support and nearly 40 percent still live with their parents.

 

Neurodevelopmental conditions have significant impact on the lives of young people and their families.

 

Children with autism are more likely to be excluded from school and experience bullying, with lasting effects.

 

A diagnosis in itself will not dissolve the numerous life-long challenges faced, but it can offer a path towards support.

 

In the words of the National Autistic society “a diagnosis is often the only hope parents and children have of getting a half-decent education with teachers who understand their condition and challenges.”

 

Mike Shooter’s emphasis on supporting children early is important.

 

However, too much focus on over-diagnosis is a considerable distraction from the early intervention, education and support that is essential for children with ASD, ID and ADHD to lead fulfilling lives.

 

The impact that neurodevelopmental conditions can have on the lives of young people and their families should not be underestimated.

 

Where a diagnosis is suspected by an individual, their family or professionals, it should be taken seriously, screened and assessed appropriately.  

 

That diagnoses of autism in this country are becoming linked with the “sort of middle-class parent” Mike Shooter targets is not a symptom of parents seeking a way out.

 

It is indicative of the current dearth of support, where too often children and young people only receive support when it is secured by their sharp elbowed parents.

 

Children with ASD, ID and ADHD deserved to be supported, regardless of how pushy their parents are.

 

Dr Mark Lovell is Consultant Child and Adolescent Intellectual Disability Psychiatrist and member of the Royal College of Psychiatrists’ Child and Adolescent Intellectual Disability Psychiatry Network.

 

This blog first appeared on Mental Health Today.

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This is a place for blogs from our members and associates who have an interesting or valuable experience they would like to share.

If you are a psychiatrist or carer and think you have had an experience that others would like to here about, please email the web team webteam@rcpsych.ac.uk.