How The Patient Journey Changes Perceptions

As you know, episode one of our Inside Outside, Making The Invisible Visible podcast is now live. 

Over the next few weeks, we’ll be taking a deeper look into the reflections, stories and key messages discussed by our co-hosts Sondra Butterworth and Dr Shanali Perera. 

In this blog, we’re focusing on the patient journey and changing perceptions. You can catch up on parts 1-3 three here.

Changing perceptions

Here’s the third part of the transcript from episode one: 

Sondra: I’m going to take a moment to read the current UK Rare Disease Framework of 2021 and one of the underpinning themes is related to the patient’s voice. 

Patients, their families, carers and the organisations that represent them live with the realities of rare diseases every day.  

They have a great amount of knowledge and lived experiences to share, which can be hugely valuable to policymakers and service providers. When designing services for rare disease patients, we’ll continue to put the patient’s voice at the heart of its decision making and collaborate closely with patients and patient organisations. 

Therefore, any commitments will be developed in consultation with patient representatives, given particular consideration to ensuring representation for those whose voices can often go unheard, including patients from black and minority, ethnic or disadvantaged backgrounds. 

What we want to do within this podcast is to present a patient’s voice. Shanali is a patient, she’s a patient who is a woman, a doctor, a rare disease patient from a black or minority ethnic group. 

Change is such a big topic to discuss. There are, of course, different types of change. For example, if we were in the business world, we’d see organisational change programs that are used with different teams, and these could be focused on the change in work systems or the promotion of behavioural change for employees. 

But today we’re going to talk about individual change and the key elements of change that relate to long-term illness or specifically to rare conditions. In this case change management is an adaptation applied to the individual. 

Shanali, can we talk about the changes that you experienced in your journey to this point? 

Shanali: Actually, Sondra, for starters, the landscape of my everyday changed drastically. My daily routine took a 180-degree turn, and suddenly I lost all that functional independence and freedom, that I had very much taken for granted. 

Everything revolved around coping, adapting, adjusting. I was dealing with multiple layers all at once, not just the physical component, but the emotional, social, spiritual, cultural stuff at work and not forgetting dynamics within relationships.

Sondra: No not at all, Sondra. I wasn’t prepared for that feeling of a complete loss of control. 

I felt powerless. I couldn’t control the direction my life was heading and the day I had to give up my career, I felt robbed of all my dreams. My life expectations have gone out of the window. I’ve been betrayed by my body. 

It felt like having ten different screens open on my laptop and not knowing how to deal with it, or having a user guide to navigate through all those screens. And I certainly couldn’t maintain or achieve any of the standards that I had set for myself, and I started to feel really left behind. I couldn’t keep up with anyone around me.

Sondra, the person, the shift I was talking to you about the move from a clinician to something in between and then to a patient was a very difficult and challenging transition for me. 

This certainly gave me a full appreciation of the impact a rare condition can have on a person’s whole life, image, identity and self-worth. 

A moment of reflection

That brings part three to a close. It was another enlightening discussion, here’s a summary of the key talking points:

Stay tuned for our next blog post as we’ll take a comprehensive look at section four of the transcript. For the time being, you can listen to the full episode here.

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