My Name is Hayley Coffey I am a Midwife and Lecturer at Canterbury Christchurch University, I am currently studying a Masters in Psychology, I have a special interest in neurodiversity, particularly Autism and ADHD. I undertook the Oliver McGowan training and was inspired to write a reflection on my thoughts. I think the training is vital for all healthcare staff, being a parent of children with additional needs I also have some insight into the complexities of accessing care and communicating with healthcare professionals, but also I understand the challenges of the work environment so felt I had a unique perspective to share.
The Oliver McGowan Mandatory Training (OMMT) in learning disability and Autism is a result of a tireless campaign from his mother Paula McGowan, to increase healthcare professionals’ awareness and understanding of the conditions following the avoidable and tragic death of her 18-year-old son, Oliver.
When undertaking the training I approached it from three different perspectives, firstly as a clinician, a Midwife, to ensure I encapsulated its purpose, secondly a mother of an autistic son and a daughter with neurodiverse and learning difficulties, and finally an academic, considering how and where the training could be most impactful.
The training is primarily a series of videos, Oliver’s mother recounts in detail the challenges that both she and Oliver faced in accessing and receiving care, what became apparent was that communication was lacking in all aspects of care and that neither the family nor Oliver were listened to. A thorough history and handover are vital to ensuring that a person receives safe and effective care, but ultimately kindness and compassion the core values of the Nursing and Midwifery Code (2018) are the foundations for all care.
The training emphasises the importance of communication, understanding and individualised care through various real-person accounts. It provides an overview of autism and the nuances of the condition such as stimming, a spiky profile and other characteristics such as meltdowns, all terms I have come to know and understand well, the training also informs clinicians about masking to meet social expectations, a term used to identify social compliance often demonstrated by autistic people when they are stressed, uncomfortable or simply trying to fit in. The training provides insight from caregivers. I know, it is often a fight, a constant battle of forms and hoops to jump through, so taking time to read the notes and understand a person before they come through the door can really make a family feel heard, (even if that is a google search of their condition) before then empowering them to inform you can make such a difference.
There shouldn’t be a need to keep repeating the same information, keep fighting for basic care, for someone to listen, as explained in the training, it’s tiring. Equally the disabled person should have a voice in every room, whether they are a child or an adult, I can count numerous times I have taken my daughter to a practitioner and they have said ‘what brings you here today mum’, to which I reply I will let her explain, she has a voice, the onus is on the practitioner to adapt their communication style.
I imagined an autistic person navigating their way through a maternity service, Midwives’ are known for their ability to build a rapport quickly, it is in a midwife’s nature to offer a reassuring touch, a back massage, a hand to hold, and a stare into the depths of your soul when your mind is telling you, you can’t do it, she will with all her might and no words tell you, you can. For an autistic person, that could be the most uncomfortable and unnerving experience of their life. So how as a midwife do I adapt my practice?, I need to understand each individual person and know that bright lights and the drumming sound of a heart rate monitor might cause a meltdown, I would explain calmly what the sounds are and why I am listening to them, but perhaps turn the volume down, I could not perform any examinations and assess labour purely on the external signs that her body is ready to birth her baby, because physical touch is just too much, or even painful for someone else.
I thought about pacing and how it is a coping mechanism for many people particularly those with learning disabilities, Autism and neurodiverse conditions such as ADHD. I considered how difficult it must be to lay on a bed listening to a monitor, the sounds, smells, and touch, I wonder how many women have done so, desperate to move, fidget, or stand, but were too afraid because they put the needs of their child before theirs and sat uncomfortable, conforming, fawning. when the reality is that adjustments could be made, if only we took the time to ASK, LISTEN and then DO.
The training also makes a very clear distinction between a learning disability and a learning difficulty, my daughter has dyslexia and uses reading aids such as overlays and tinted glasses, she describes the way she sees letters on a page as people jumping in a playground… ‘they’re like me’ she said ‘they can’t stay still’ (she also has ADHD) I posed a hypothetical question to her as she had been complaining of a stomach ache.
I said, if we went to the doctor about your stomach ache and they gave you a leaflet on white paper, how would you feel, and what would you do?
She said, I would ask you or them to read it to me, or If I was on my own, I would wait until I got home and read it with my overlays, it would be frustrating because I’d want to make myself better straight away.
I then said what if the Dr asked, what the best way was to give you the information, and you could say, email, purple paper etc. She replied that would be great! I could make myself feel better straight away – but they don’t do that. This seemingly small gesture could make such a difference.
There are many forms of accessibility that could be life-changing but are just not implemented. It is unreasonable to expect clinicians to instinctively know how to adapt to every individual, which is why the OMMT is so vital for every health and social care professional, however beyond that, I propose that all education settings receive coproduced training, to highlight the need for early access to support for families, an awareness of the conditions and a promotion of an inclusive and accessible curriculum.