Written by Mala, patient advocate

I am a lived-experience adviser and patient advocate, working with NHS teams and charities to improve accessibility for neurodivergent people. I write in a personal capacity. When I enter a healthcare setting, I bring not only my symptoms but also years of experience as a South Asian woman and a neurodivergent patient. These experiences shape how I process information, communicate, and feel safe in care.

In my experience, the system too often only focuses on a diagnosis or form, leading to my concerns being minimised, my pain dismissed, or my communication misunderstood. Truly patient-centred care means recognising the diversity of minds, communication preferences, sensory needs, cultures and languages, and ensuring healthcare is accessible, respectful and inclusive for all.

The reality of being misunderstood

During one GP visit, I struggled to explain my symptoms. When I asked the GP to slow down with their questions and to provide written explanations, my hesitation was perceived as avoidance. As a result, the appointment ended quickly, and my symptoms were dismissed as “stress”, something that is common in my community and often used to minimise women’s experiences. I left feeling dismissed and ashamed, not because of my health, but because I did not fit the expectations of a “typical” patient. That experience has stayed with me. It taught me that being misunderstood by a healthcare professional is not a minor issue; it can make people reluctant to seek care, delay diagnoses, and cause significant harm to trust.

What makes the difference

I have also had positive experiences of care. In a different appointment, a hospital consultant recognised that I was overwhelmed. They paused and asked, “Would it help if I wrote this down for you, so you can look back later?”. That simple act of empathy changed everything. I left the appointment not only with clarity about my treatment, but with a sense that I mattered as a person, not just a patient.

These contrasting experiences show how powerful small adjustments can be. Some improvements to patient care can be low-cost but impactful. Three things that I would recommend to clinicians are: allowing for extra time during consultations, providing written notes for clarity, and asking patients for their preferred communication methods.

These are not luxuries; they are reasonable adjustments that make the difference between exclusion and empowerment.

The importance of safety and trust

Healthcare is about more than treatment. It is about trust. For neurodivergent patients, especially those of us who are also South Asian women, building that trust requires staff to recognise the multiple layers of bias we face: gendered, racialised, and neurotypical.

Each of these biases can compound the challenges we experience and prevent the system from fully addressing our needs. Recognising these intersecting barriers means understanding that our needs may differ but are equally valid.

When staff approach with openness and respect, patients feel safer to share honestly. This honesty leads to better decisions, improved adherence to treatment, and ultimately, better outcomes.

Beyond healthcare

These challenges extend beyond healthcare. In workplaces and other systems, I have also been misunderstood, marginalised and at times exploited. Carrying multiple identities being neurodivergent, South Asian and female, means facing layered misunderstanding and discrimination. However, healthcare is where safe, supportive understanding is most urgently needed, as it forms the foundation of our wellbeing and when the system gets it right here, it shows that inclusion is possible everywhere.

A call to action

We cannot achieve a truly patient-centred NHS if patients who are neurodivergent, South Asian, or female continue to be marginalised or misunderstood. Training, awareness, and co-production with patients must become standard practice, not optional extras. Neurodivergent South Asian women and patients from other systemically oppressed groups must not be an afterthought in the NHS; our voices must be central to shaping the system.

Change does not have to take years. Within just a few months, initial training sessions could begin, alongside feedback loops that actively engage patients and carers. Envision a tangible shift where this feedback shapes real adjustments, ensuring a more inclusive NHS. Listening to us, learning from us, and adapting to meet our needs benefits everyone.

Conclusion

I share my story not just for myself but for every patient who has ever walked away from a healthcare appointment feeling unseen or unheard.

Healthcare is about people. If we want a system that works for all, we must recognise the value of every voice, including the voices of neurodivergent South Asian women, who for too long have been unseen and unheard.

What can you do today to ensure that these voices are not just heard, but listened to and acted upon? By doing so, we can begin to transform healthcare into a truly inclusive and empathetic environment for everyone.