Please login to the form below

Living my best life with multiple sclerosis

Multi-award-winning advocate and patient engagement champion Trishna Bharadia gives a valuable insight into life with multiple sclerosis. She explains how treatment has changed, how our healthcare systems and pharma can unite to improve quality of life for MS patients today, and why her diagnosis isn’t stopping her achieving her goals.

What was your life like aged 28? What were you doing? What were your plans? At 28, I was developing my career, thinking about marriage, considering buying a house and generally ‘finding my place in the world.’

Now imagine your life being thrown into a tailspin because you’ve been told you have a degenerative neurological condition for which there is no cure. Imagine receiving this diagnosis and nobody can give you a prognosis to say how quickly your disease will progress or which bodily functions will be affected.

On top of that, imagine that you’re faced with a “black hole” of information and support. You’re sent away with no guidance or signposting as to what you should be doing next, what services you might need, or where you can go for reliable information to make important decisions that could affect the rest of your life.

That was me in 2008 when I was diagnosed with multiple sclerosis. I felt completely disengaged from the healthcare system.

Fast-forward ten years and not only have I seen progress in terms of treatment options, research priorities, the value of shared-decision making and self-care, and the strength of the patient voice. I’m now better informed, better connected and have become a highly experienced patient advocate and patient engagement champion.

You don’t know, what you don’t know

One of the biggest hurdles I faced post-diagnosis was that I didn’t know what was out there. Over the years, once I’d discovered the NHS patient charter, organisations like the MS Society, the MS Trust and MS-UK, and I’d connected with peer-to-peer support, whether in person, online via social media or through networks like Shift.ms, I gained access to a wealth of information that has really helped me.

However, life would have been much easier if I’d been signposted to these organisations at the time of diagnosis. Unfortunately, I still hear of patients being diagnosed and sent away with no information or guidance.

Once diagnosed, there needs to be channels through which patients can receive reliable and up-to-date information so that they’re able to manage their condition as effectively as possible. The paternalistic model of healthcare is changing rapidly, and the MS space is no exception.

As a patient, I want to know that I can have a two-way conversation with my healthcare team and that I will be respected and encouraged to have an active and informed role in my care. When I was diagnosed by a general neurologist this didn’t happen. It only began to happen after I switched to an MS specialist neurologist who is a patient engagement champion.

Download the full article here

7th January 2019

Share

Tags

Company Details

Blue Latitude Health

+44 203 328 1840

Contact Website

Address:
Blue Latitude Health (UK)
140 Aldersgate Street
London
EC1A 4HY
United Kingdom

Latest content on this profile

MIT reveals new pill to deliver insulin
A new MIT research project, sponsored by Novo Nordisk, is aiming to deliver insulin orally with a pill that releases medicine in the stomach lining. Dina Patel interviews the team and reveals the innovative engineering behind the pill.
Blue Latitude Health
Precision medicine from concept to clinic
In our latest edition of ‘Perspective’ magazine, we examine the challenges and opportunities for several stakeholders impacted by the dawn of precision medicine
Blue Latitude Health
The problem with the ‘recovery’ conversation in mental health
Account Executive Loredana Gogoescu discusses the impact our language can have on people experiencing mental illness, and asks if terms such as 'recovery' are appropriate.
Blue Latitude Health
'Fake news': battling misinformation in healthcare
Blue Latitude Account Executive Ford Stewart explores inaccurate reporting of healthcare innovations and the consequences of fake news for patients, healthcare professionals and the public.
Blue Latitude Health
50 questions for delivering an exceptional healthcare brand experience
Our 50-question brand planning checklist for healthcare ensures you deliver an exceptional experience, based on what your stakeholders want and need
Blue Latitude Health
The brand strategy revolution
Introducing a new tool for developing a stakeholder-centric brand, based on the experience your patients and their HCPs want and need.
Blue Latitude Health