Finding a voice: how Faaria’s experience is inspiring change

Published: 30 October 2025

Faaria’s experience with her Macmillan nurse and HOPE programme made her want to ‘give something back’ and help other people.

She speaks passionately about barriers to care in terms of ethnicity. She explains how her cancer impacts her daily but sharing her experiences to improve things for others is a motivating factor for her.

Motivation for advocacy and giving others a voice

Faaria has had some difficult experiences while receiving treatment for indolent follicular lymphoma, which is a slow growing type of non-Hodgkin lymphoma. She says some of theses experiences have ‘haunted’ her. One registrar spoke over her head and asked her husband’s permission to examine her. Others came into the room and assumed she couldn’t speak English because of her name

She wasn’t listened to when she felt the chemotherapy she was receiving was having an adverse effect on her. It turns out she was intolerant and had been left with peripheral neuropathy, which still affects her to this day.

“The only reason I mentally survived that was because of my Macmillan nurse, what she did for me and how she empowered me and helped the whole family.”

A moment that influenced Faaria to help others was when an elderly patient was having the same symptoms of intolerance to chemotherapy treatment as she had but was dismissed due to his age. “I know he suffered and continued to receive the drug that caused the peripheral neuropathy. He never recovered from that where I only had one dose of the drug and although I’ve still got it [peripheral neuropathy], it’s nowhere near as bad as it could have been.”

Standing up for others

Faaria says it’s experiences like this that motivate her to speak up for others.

She sought out a support group following her experiences: “that sparked something in me to make me think, well, if I could get involved, I could perhaps stop someone going through what I went through.”

The barriers she has faced due to her ethnicity and chronic conditions has led her to take part in patient advocacy work. She is now a patient advocate at York Hospital, has been a committee member for Cancer Research UK and for the National Institute for Health and Social Care research. She has advocated preparing an anti-racism toolkit for the NHS and was a patient advocate for the Hope Course as well.

Faaria explained that because she is Muslim, part English and part Jamaican she has different insights and perspectives to others and understands the connection between being multi-ethnic and being misunderstood.

“I hope I can identify where things can be improved for people from minorities. That’s my particular interest.”

Reaching communities and challenging misconceptions

“One of the biggest misconceptions about Macmillan is it’s about end-of-life. Families, particularly in different cultures have a different approach to end-of-life and who should be involved. Some are very, very private about it, that’s a factor you know. There will be other factors for other groups and it’s being able to breakdown those barriers.”

At first Faaria didn't think she needed any help or a Macmillan nurse. “That’s another thing we have to try and get out there… making sure people realise there is something there for them, even if they don’t know it’s needed.”

The impact of support from a Macmillan nurse and the Hope course

Woman with sunglasses standing outdoors. In the background there are trees and hills. Sher is wearing a white top with print.

Faaria acknowledges how her Macmillan nurse supported her whole family and how invaluable that was. Her nurse helped her with things like applying for a Blue Badge, which helped her begin to get out again.

“It did go on for quite a long time until I was able to say, I think I’m OK now. You can let go of my hand.”

“When you finish your cancer treatments, even if you still have cancer, it makes you feel like you’re falling off a cliff edge. Having that connection with someone you know, a gradual step down from being looked after by the NHS, it’s really, really important. That’s how the whole Hope Course really helps, but also the Macmillan Nurse. It’s unique. Macmillan really was like the parachute when you step off that cliff.”

Faaria then accessed the HOPE programme which is a free 6 week online course. It is designed to support people in developing techniques and strategies to manage aspects of living with cancer: “it changed the course of my mental state. The things I learned on the HOPE course, I am still using every single day of my life.”

She still gets emotional thinking about everything that happened to her.

“I have to stop myself from falling into heaps on the floor, but my Macmillan nurse, along with the HOPE programme gave me direction, energy and focus. I decided I needed to give something back, because of all the help I had but also to help people who were like me, that did not perhaps have a voice. I managed to fight but other people didn’t manage to fight.”