Asya Choudry is proud to focus on equality and diversity in her role as the community engagement manager for Alstrom Syndrome UK through the Breaking Down Barriers project and talks to RARE Revolution about just some of the projects she is involved with. With an unwavering passion and resolute commitment to making a difference in the rare disease space, Asya says herself, that the best is yet to come!

​PEO series: meeting the beating hearts behind the rare brands

1.

How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future? 

I have been the community engagement manager for Alstrom Syndrome UK (ASUK), working on the Breaking Down Barriers (BDB) project for nearly three years now. ASUK have always had a patient engagement role that was created when it was founded in 1998. My role focusses on helping our member organisations create bespoke projects using the funding provided as part of the BDB project. I support organisations to improve engagement with BAME communities, improve access to genetic services, and help them facilitate the project into fruition and evaluation.

The role has developed and includes more educational and consultancy areas, mainly working within equality and diversity and reducing health inequalities. Working for a small organisation allows you to have a lot of flexibility, working in different areas and making suggestions for which direction we can take. I really enjoy it when I can help with things that I am really passionate about and can really get stuck into.

2.

What does a typical week entail for you, and are there any specific projects you can tell us about?

As I work for Breaking Down Barriers three days a week and for Ehlers-Danlos Support UK (EDS-UK) as their helpline and medical liaison manager for two days, my week is fairly action packed. On a standard week in BDB, I’m usually having meetings with our member organisations on different aspects of their projects and supporting them through any difficulties. I also provide feedback and review their action plans or evaluations. In general, it’s a very creative role as you are always having to think on your feet and suggest new ideas for the organisation considering their size, demographic and who they are trying to engage from diverse communities. Otherwise, it’s speaking at events to raise awareness of BDB or doing the background work that every organisation needs to help everything tick along.

My other position within EDS-UK is to manage their national helpline supporting those living with a connective tissue disorder called Ehlers-Danlos syndrome. The helpline is not only used by patients looking for support but is also used by professionals hoping to understand more about their patients. I also train healthcare professionals on how to manage patients with EDS and host webinars with medical professionals who are experts in EDS to help educate the community on specific areas of the condition.

One Project I can speak about is the ‘Let’s Talk Diversity’ campaign we are doing as part of BDB. It is something I am very passionate about and I am so happy that it is finally in full swing. The campaign is about interviewing professionals and patients to discuss what diversity means to them. Any professional or person with lived experience who is either from a BAME background or works in the diversity sector, we would love to hear from you! It’s all about exploring their personal experiences growing up, why they chose to work in this field and what changes organisations can make to improve inclusivity. It’s real conversations with real people. I believe it is through these stories that we can impact change of behaviour in our work culture to become more inclusive internally and externally within the diverse communities we serve.

3.

What were your personal motivations to taking up a role in patient engagement?

I had a brother who passed away at the age of six from a genetic condition. My mum had a bad experience with the health professionals at the time and felt she was blamed for her son’s condition. This stopped her from seeking support. This motivated me to learn about genetics and how to communicate the chance of inheritance effectively. No-one should be made to feel how my mum felt, hence why the need for cultural competency amongst health professionals is paramount, as it can be the difference between families feeling heard, supported and engaged.

4.

What makes the role of patient engagement officer important to your organisation?

5.

In your role, how do you ensure the patient voice remains central?

I think this is not isolated to my role, but it is part of the ethos of the organisations I work for. At ASUK and within BDB, we have patients that are part of our advisory board and trustee board, which keeps the patient voice at the central heart of our projects and our learning. We also have patient advocates who are always invited to be a part of our events, conferences and webinars. We always ask each member organisation at the start of their journey how they know a certain project is needed within their organisation and how their members are involved in the planning, monitoring and evaluation of projects. BDB collates examples of good practice from the projects that we fund, and we always encourage quotes and feedback from the communities they serve to form parts of their evaluation so that we can monitor impact.
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​It is the people and communities that we are all doing this for. They are the ones that determine the success or learning from each project and they help inform how we adjust our projects and funding activities. Patient voice/involvement is and always will be a key priority for ASUK and BDB. My other role within EDS-UK also incorporates these ideas by having patient representatives as ambassadors and volunteers running the support groups in all represented regions.

6.

How do you reconcile operational business needs with elevating the patient voice?

At ASUK we have worked hard to establish a representative and diverse board of trustees in terms of demographics and lived experience. We also conduct a skills audit to ensure we have a positive combination of people and skills to help drive the charity forward and succeed. The needs of our members will always be a key priority and the only way we can determine need is by listening to individual and collective voices and using this to shape our organisational strategy and the services we provide.

7.

What are the most rewarding aspects of your role?​

Oh there are far too many to note, so I will do my best! As I mentioned I have a personal passion and volition to working in this field so I am far too biased as it is. I love the variety of conditions that I work with and having the continuous challenge of creating new projects and engaging new communities.

I love learning about new faiths, cultures, celebrations and practices. We recently did a social media campaign called ‘share your colours, share your culture’ for Rare Disease Day, where we had patients, professionals and patient organisation representatives take part in talking about what their culture means to them. I also love the fact that I get to use my lived experience as a British Pakistani Muslim who speaks some of the South Asian languages, to help guide cultural understanding and education.
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The best part of my job is knowing that you are making a difference to people’s lives in so many ways. Either through improving services or ease of access, or just by giving communities confidence to uptake what the charities are offering. Every family or community that has children who are living with a genetic condition have a lot of hardship in numerous areas of life, if we can improve even one aspect for them, that’s a life well lived. I am also thankful to have amazing colleagues, who trust and support each other, it is this respect that helps us to be productive with our aims of wanting to help people and improve services.

8.

What is your proudest moment in your career thus far?

I am proud of all the organisations that we support, and the hard work and determination that they have put in. I feel proud of their success and achievements. I am also proud of the charity that my family run called Mushtaq Welfare Trust, which offers a UK standard of education to orphaned girls in a village in Pakistan.

I feel that the proudest moment of my career hasn’t happened yet, so watch this space! I have big dreams, so I’m hoping to continue working hard to do some good, and I have faith that the best is yet to come.

9.

What advice would you give someone considering working in the rare disease space?

I would say to keep an open mind and to always remember that there is more that connects us than divides us. Working in rare disease is all about kindness, understanding of others situations and helping improve your little area of work for others, to offer equal access to all. It is important to consider that your staff and organisation should reflect the community that it serves, as this in-house understanding will be beneficial to staff as well as members.

10.

If you weren’t Patient Engagement Officer of Breaking Down Barriers, what was Plan B?  What did your 10-year-old self want to do as a job?

I went through quite a few phases before I decided on genetics when I was 16 years old. When I was a little, maybe seven or eight years old, I wanted to be Ricki lake, a chat show host, and help people with their life problems. I was very committed to this idea as I’d walk up and down the windowsill with my plastic microphone (that was actually a pencil case) and give my advice to help people with their marital problems.

In my early teens I then wanted to work in the police force as a criminal profiler, because I liked a detectives’ job in a television show called ‘The Bill.’ Otherwise, I was mostly interested in advertising and marketing. My friends and family would always say that I could sell ice to an Eskimo, and I was always coming up with creative ideas and jingles.

Projecting forward, my end goal would be to work in reducing health inequalities and Equality, Diversity and Inclusion, maybe even for the WHO or UN and here’s to dreaming, becoming Health Secretary!