Disability, the NHS, And Us
Becoming a patient as an NHS-trained clinical scientist has truly challenged my understanding of myself, of other people, and of the NHS
When I gave lectures on disability and rehabilitation engineering to postgraduate NHS Trainee Clinical Scientists at King’s College London, I talked about the International Classification of Functioning Disability and Health, the different models and dimensions of disability, and used case studies and my experiences of working with patients, to discuss how we as staff approach patients, the issues in their lives and how to use our technical skills as engineers to improve the quality of people’s lives.
Rehabilitation Engineers are a niche in the NHS. Most people think of Doctors and Nurses when they think of the NHS, so I’ll give you some background about the profession, then talk about how I became a patient and some of the lessons I learnt.
I am a Clinical Scientist (Engineer). We work at the interface between the technology world and the clinical world in order to apply science and engineering to healthcare. Think about technology and STEM subjects in a hospital. There are MRI, CT, ultrasound, diagnostic radiology, scientific computing, radiotherapy and radiation protection, clinical engineering, physiological measurements, rehabilitation engineering and many other areas. We typically have a physics or engineering background, undertake postgraduate clinical training, and often do PhD research. Our professional body, The Institute of Physics and Engineering in Medicine (), gives more information. We are not nuts and bolts engineers with greasy boiler suits. To work as a Clinical Scientist (Engineer), we are required to have those hard technical skills, but also the soft skills necessary for working with patients and vulnerable people.
When I embarked on training to become an Engineer, I alternated between two completely different career paths, one directed towards becoming a professional Chartered Engineer and one directed towards becoming a clinician in the NHS. All of the choices I made were to make me as multi-skilled as possible for the NHS, collecting lots of academic credentials along the way (PhD MSc, BEng(Hons) DipIPEM, MIPEM, MIEE).
However, it was through life experience, part-time work, rent-paying jobs, and interacting with people in different roles in the NHS that I developed soft skills. I started portering in A&E, then trained and worked in audiology, lung function, neurophysiology, orthotics, prosthetics, wheelchair services, gait assessment, and onwards (including neonatal and adult intensive care) in Derriford Hospital, St George’s, Queen Mary’s, Guys and St Thomas’, then training for the NHS Nightingale. I won’t go through the eye-watering, life-changing things I witnessed in the NHS because most seasoned staff have seen it. It is far more than perhaps many members of the public will encounter. Working in the NHS shapes our worldview and is perhaps the reason the NHS as a whole is a progressive organisation. But that’s a different story.
Once individuals have learnt the hard skills of engineering, training to be a clinician can be challenging for young engineers and physicists because we have to learn to put the geek in a box in our minds, develop soft skills with patients, and learn to switch between the two on the fly. To simultaneously have technical conversations with people on the team while being empathetic, compassionate, encouraging, engaging, and using initiative with patients. It is an incredible skill when you see it being done well, and I have been fortunate to have worked alongside some incredible people who have helped me develop that. To work at that level requires close-knit teamwork, with the shared ethos that we put patients first. Since the energy and focus of soft skills are directed towards patients, there is often a collective unspoken acceptance that you are not looking over your shoulder at colleagues competing for your job. When that is understood as a group, you have fluid teamwork working in flow states for the benefit of patients.
Yet, there are different types of teams and departments within the NHS, each with its own flavour. Typically, my colleagues and I have found that those working in patient-facing roles work in more cohesive teams, whilst trust-wide departments are much more hierarchical. In that hierarchical environment, people play the game of managing their manager much more in an effort to climb the hierarchy. Perhaps because they are more detached from the immediate interactions with patients. The accepted social norms, attitudes and behaviours between patient-facing teams and hierarchical departments are incredibly different.
I moved from working in patient-facing roles to a hierarchical department with a ‘patient-facing rule book’ about teamwork. I spoke openly about issues that were causing dysfunction and inefficiency. Yet that level of open, honest, collaborative teamwork took people around me by surprise because they were quietly competing with each other. I was pointing to elephants in the room, openly saying, “That doesn’t seem right”, to which the response was often a quiet “We know, but you’re not supposed to say it out loud”. I essentially blew everyone’s cover by speaking too honestly for that type of working ethos.
The more I pointed to and questioned dysfunction and inefficiencies, the greater the backlash I received from individuals in the managerial hierarchy. Not simply because “that’s how we’ve always done it” but because I was perceived as challenging their positions as individuals. Challenging their status. I became the focus of lots of negativity and anger from my own managers.
How do you address a problem if you don’t talk about it? How do you find solutions if you do not acknowledge the problems? As an engineer, I have a fault-finding mind, which requires one to pinpoint flaws in order to address them precisely. But in the environment I was in, that was not understood. I became more and more exhausted attempting to raise issues, find solutions, and convey my perspective in a way that didn’t upset managers so much that I burned out through the mental gymnastics.
I went on sick leave and found myself sitting in meetings in front of an NHS Occupational Health Physician. It is a very unsettling place to be for an autistic person working in the NHS because I was unsure if I was a patient or a member of staff. Occupational Health Physicians have the ability to open a pathway that treats staff like individuals and valued members of staff with the potential to offer or to treat staff like patients with mental health problems. They were unfortunately unprepared or not allowed to talk about the issues that led to me burning out, so I was treated like a patient. I became more patient than a valued member of staff. The emphasis on Occupational Health and Employee Relations was on “What is wrong with Graham?” rather than “What are the issues Graham is highlighting, and how do we work together to solve them?”
When enough people start to question what is wrong with you, you do it to yourself. What is wrong with me? Since I was in a position where so many individuals in an NHS Trust were focused on “What is wrong with Graham” rather than solutions, it became harder and harder for me to change the agenda. My lone positive self-talk was drowned out by the negative emphasis on a procedural system. So much so it led me to a psychiatric hospital. “What is wrong with me?”.
Inside the psychiatric hospital, I met other members of NHS staff who were being treated as patients and have spoken to others via social media. There is a known phenomenon that NHS staff can lose their sense of self and their identity when they go on sick leave with the NHS. Staff in the hospital told me, “It often happens”. The mask of our identity comes off. By handing in my NHS ID badge in the psychiatric hospital, I lost any sense that I was a valued member of staff and instead became a vulnerable patient under the care of a psychiatrist. Well, that was awkward. How much did I think my way into here, I wondered, and how much was it a flawed system pushing me out? “What is wrong with me?”.
Two psychiatrists and a psychologist said there was nothing wrong with me; another gave me an autism diagnosis, and another later suggested I was not autistic. So, where does that leave me? Who am I? I have a ‘formal diagnosis’, but I knew during the assessment I appeared more autistic than ever before. Because, for me, the appointment was situational. I was there for an autism assessment and, therefore, needed to focus on the tasks he was asking me to do. If he and I had met to discuss a research proposal, the situation would have been different, and I wouldn’t have walked out with a diagnosis. In the report, many challenges were rated as significant, which made me feel like I was significantly disabled. Months later, I got back in touch and questioned some of the points, and he adjusted them, making them less significant. I felt slightly less autistic, slightly less disabled.
How much of the diagnosis was me? How much of the autism is me or someone else’s judgement? What can they see in me that I cannot? If I tell someone, “I am autistic”, the immediate reaction is, “You don’t look it!” If I go up to someone with a clipboard in the street and say, “I am a market researcher”, the response isn’t, “You don’t like it!”. One is a job title; the other is a psychiatric label. Both are labels. Both can make up a person's identity or not.
Can I choose to be less autistic? When my father was diagnosed with an idiopathic polyneuropathy, he was pleased to have a label because it gave him something to go on. I resisted the urge to explain the two words. The autism label I was given remains equally vague today.
One of the challenges associated with autism, we are told, is how autistic people interact with others. So, given a diagnosis, I thought, “Ok then, let’s problem-solve: how am I interacting with other people? What can I do to improve?” No one from the Trust I worked in contacted me and said, “How can we improve?” Because there was no support or understanding from my employer, and I was threatened by a manager, I chose to resign for my own safety and out of compassion for the Occupational Health and Employee Relations staff who didn’t seem to know how to support neurodivergent staff (Compassion is a Trust value after all).
The root, however, is the idea that I felt I needed to improve something within me in order to fit in and contribute to a company developed around neurotypical social norms and styles of communication. Rather than anyone in the Trust simply asking, “What are the issues Graham is highlighting, and how do we work together to solve them?”
Part of me wears my NHS-trained Clinical Scientist hat, looking at how services can improve, but I am labelled as a patient being told (by NHS staff) that they are not well equipped to support neurodivergent individuals. It’s a long shot, but maybe listen? Perhaps use the unconscious bias training we’ve all had and treat people as valued individuals?
With my clinician hat on, physical disability is relatively straightforward in the great scheme of things because it is tangible. We can see physical differences, see walking sticks, prosthetics, and orthotics. We can measure gait and posture, and physical surgical interventions aim to correct bone and muscle deformities. However, mental disability, or psychiatric disability, is far more complex because no individual, whether they are a trained psychiatrist with many years of experience or not, can experience the world through a patient's eyes.
Becoming a patient as an NHS-trained clinical scientist has truly challenged my understanding of myself, of other people, and of the NHS in terms of how it treats patients. When I go for any medical appointment, part of me is being a patient, and part of me is trying hard to quiet the person who worked in clinical service improvement. “Let it go, Graham, let it go”.
I have had similar encounters with therapists. Autistic people are made to question what we can do to improve our social interaction so much we have a lot of therapy. We can become over-therapised. Many therapists have told me I could be a therapist. Who do I go to? I have become my own therapist. Perhaps that is what Carl Jung calls the process of individuation.
Do I need to do the shadow work (again), or does the person in front of me need to?
I hope you can see how easy it is for me to go around in circles in my thoughts, unable to pin down who I am.
I am trying to embrace the absurdity of life. So if you see me smiling, just smile back. As Thich Nhat Hanh says, “We inter-are” the person in front of you, whoever they are, patient or member of staff, is the most important person at that moment. We are all individuals with so much to offer.
