"I felt like my life was over" | Life with Bell's Palsy: Gary Parsons

What I learned from season 3.

In this episode, I go through some of the key takeaways from this season. I cover what I have learned from different conversations, practical advice that came up, and a few things I have been noticing through my advocacy work. This includes navigating care in a crisis, dealing with the realities of chronic conditions, and some thoughts for patients, carers, and healthcare professionals. ⸻ 00:00 Why I am doing this 02:30 Emergency care and specialist centres 05:30 Medication, pressure and misinformation 08:40 NHS challenges and patient burden 10:45 Current treatment and therapies 12:15 Podcast direction and future plans 15:40 Practical advice and therapy 17:15 Supporting carers 18:35 Advice for parents 21:30 Mental health resources 23:55 Advocacy and working with healthcare professionals 25:45 Getting involved in advocacy Social media: Instagram https://www.instagram.com/lifewithadifferencepodcast/ TikTok https://www.tiktok.com/@lifewithadifference Linkedin https://www.linkedin.com/in/andrew-collinson/ Please get in touch if I can help in any way Blog: https://www.lifewithadifference.info/ buymeacoffee.com/lifewithadifference

Clinical trial participation basics with Professor Carsten Flohr

In this episode of Life With a Difference, I’m joined by Professor Carsten Flohr, Professor of Dermatology at St John’s Institute of Dermatology, King’s College London, and Consultant Dermatologist at Guy’s and St Thomas’ NHS Foundation Trust. Through my work as a patient advocate, I regularly encounter myths and misconceptions about clinical trials, from fears about being a “guinea pig” to concerns about safety, placebo, and being locked in once you start. This conversation is intended to help address those concerns and explain, in plain language, how clinical trials actually work. We also explore why trial participation is so vitally important. Without people choosing to take part, new medicines cannot be developed, tested, or approved. Clinical trials are the foundation of progress in medicine, and they are how safer, more effective treatments reach patients who desperately need them. What we cover 00:00 Intro 00:31 Who Professor Flohr is and why clinical trials matter 02:20 How medicines are developed, from discovery to post-marketing monitoring 03:50 Phase 1, 2, 3 and 4 explained 04:20 MHRA, NICE and NHS commissioning in the UK 06:05 QALYs and how NICE assesses value for money 08:10 What a clinical trial actually is 09:05 Common myths and misconceptions about trial participation 10:00 Trial design, washout periods and independent oversight 13:10 What a trial visit looks like in real life 16:30 Endpoints, placebo and open-label extensions 18:20 Your right to withdraw at any time 19:05 What happens when a trial ends 21:50 Why diversity in trials matters and who is under-represented 24:40 Reimbursement, remote trials and patient involvement 30:15 How to find clinical trials and trusted resources 38:05 Final advice for patients considering research Resources mentioned UK Clinical Trials Gateway ClinicalTrials.gov UK Dermatology Clinical Trials Network British Skin Foundation National Eczema Society Psoriasis Association NIHR Sponsorship and transparency This episode was sponsored by Novartis. Novartis had no editorial control over the content. This episode is non-promotional, for educational purposes only, and does not provide medical advice. No medicines are discussed or endorsed. Always speak to your clinician or research team for personal medical guidance.

An Eczema emergency pathway | Holly Lloyd

In this episode of Life With a Difference, I’m joined by Holly Lloyd, who has lived with eczema since infancy and, over the last year, experienced a level of severity that most people simply don’t understand. Holly’s story is hard, but it’s also incredibly practical, because she shares an emergency pathway that helped her access specialist dermatology care when things became unsafe. 00:00 Intro, why Holly’s story matters 00:09 Meet Holly, lifelong eczema and how 2025 escalated 01:03 Childhood eczema, bandages, then “growing out of it” 02:05 Eczema returns in her 20s, spread, and moving beyond topicals 03:22 The last 6 months, full body decline, rapid overnight flares 04:38 No sleep, severe inflammation, repeated infections 05:14 Why “eczema” gets minimised, the extreme end people don’t see 08:03 When Holly knew it wasn’t normal anymore 09:27 Complex case clinic, advocating hard, still no proper escalation 11:17 Moving back with her mum, surviving becomes “normal” 13:14 Private vs NHS routes, and how to push for specialist care 14:23 Holly researches Guy’s and St Thomas’, planning to self refer 15:56 The difference at Guy’s and St Thomas’, “human” and thorough 16:14 The emergency pathway, walking into A and E 16:33 Local hospital admissions, why it felt unsafe and insufficient 17:48 What went wrong in general hospital care 20:39 Discharged because blood markers looked “okay” 21:33 Why severe skin needs a real emergency pathway 23:19 Holly’s decision, taxi to St Thomas’ A and E 25:07 Rapid decline in the waiting room, admitted by 3am 27:04 The scary part, tick box medicine and missed urgency 29:31 Guy’s vs St Thomas’, how the hospitals work together 31:49 What happened after admission, being properly supported 32:17 Consultants travel over, “show us more”, thorough investigations 33:44 Patient lodge + dermatology day care clinic 35:24 The key takeaway, if you’re severe, this pathway exists 36:43 Being a mum, weighing risks, needing a break to survive 39:01 The mental health reality, severe eczema can be life threatening 40:32 Treatments tried and what’s next 46:10 Ongoing weekly follow ups, proper monitoring 47:24 Why care and practical support changes everything 49:42 If Holly ran the NHS, what needs to change 54:18 Sharing pathways, reach out, community support 55:08 Where to find Holly, and her offer to help others 56:47 Message to carers and supporters 57:17 Closing thoughts We talk about: • What severe, full body eczema can actually look and feel like • Repeated infections, loss of mobility, and the mental toll of living in constant fear of the next flare • Why “eczema” is often minimised, even when someone is genuinely in crisis • The difference between standard hospital care and specialist dermatology teams • The emergency route Holly used to access Guy’s and St Thomas’ care • The value of dermatology day care and what real support looks like when you are too unwell to care for yourself • Treatment decision making when you have tried everything and you are just trying to get your life back If you are living with severe eczema and feel stuck, please know you are not alone, and you deserve proper care. Holly on Instagram: @HollyLloydskin Social media: Instagram https://www.instagram.com/lifewithadifferencepodcast/ TikTok https://www.tiktok.com/@lifewithadifference Linkedin https://www.linkedin.com/in/andrew-collinson/ Please get in touch if I can help in any way Blog: https://www.lifewithadifference.info/ buymeacoffee.com/lifewithadifference

"I felt like my life was over" | Life with Bell's Palsy: Gary Parsons

Gary Parsons (as seen on Channel 4’s Love My Face) talks candidly about Bell’s palsy, facial paralysis, mental health, and what it really takes to live uninhibited.  We dig into the show’s mission, representation in the media, the gaps in NHS support (especially psychological care), practical roadmaps for patients and carers, and how advocacy and community can lighten the mental load of a long-term condition. Chapters 00:00 Intro 00:50 Gary’s story & Bell’s palsy 03:20 Inside Love My Face (Channel 4) 08:05 The show’s mission & impact 14:20 Causes, bilateral paralysis & anxiety of recurrence 19:15 Treatments, surgery, physio & Botox 24:10 Self-acceptance vs. the search for a “cure” 31:00 Advocacy, mental health & speaking from the “scar” 40:30 NHS experiences & the case for psychological support 48:20 A practical roadmap for patients & carers 52:05 Living uninhibited & owning your identity 1:05:00 Gary’s projects, Changing Faces, and where to find him Resources mentioned  • Changing Faces UK (support & representation)  • Facial Palsy UK (guidance, clinics, rehab tips) Connect with Gary Website: garyparsons.uk Social: @GaryParsonsUK If this helped you, please like 👍, subscribe, and share with anyone navigating visible difference, facial palsy, or long-term skin conditions. Your support helps more people find these conversations. #BellsPalsy #FacialParalysis #VisibleDifference #LoveMyFace #ChangingFaces #MentalHealth #SelfAcceptance #Dermatology #Advocacy #Channel4 #PatientVoice #ChronicIllness #UKNHS Social media: Instagram https://www.instagram.com/lifewithadifferencepodcast/ TikTok https://www.tiktok.com/@lifewithadifference Linkedin https://www.linkedin.com/in/andrew-collinson/ Please get in touch if I can help in any way Blog: https://www.lifewithadifference.info/ buymeacoffee.com/lifewithadifference

'Empathy is undervalued" | Mark Doyle, Founder: A Life in a Day

I am a huge believer in A Life in a Day's ability to create a world with more empathy, understanding and ultimately concession for patients. Our missions completely align and I very much look forward to supporting Mark and the team in any way I can. In this sponsored episode of Life With a Difference, I’m joined by Mark Doyle, founder of A Life in a Day, an immersive learning experience designed to help people working in healthcare walk in the shoes of someone living with a health condition for 24 hours. We talk about how the concept began, how the experience is built using a combination of an interactive app, live phone calls with actors, and a physical kit, and why it can create a level of empathy and understanding that is hard to achieve through conversation alone. Mark also shares how A Life in a Day developed its first therapy areas, from Crohn’s disease to heart failure and oncology, and what the team has learned about doing this work ethically by starting with patient stories first. We discuss the balance between realism and sensitivity, how they validate experiences with lived experience and medical professionals, and what meaningful outcomes can look like, from shifts in mindset to practical changes in trial design, communication, and patient support. If you work in healthcare, pharma, medical education, research delivery or simply want your team to have a higher level of empathy and you’re curious about building deeper patient understanding that leads to better outcomes, this conversation is for you. Sponsor disclosure This episode is sponsored by A Life in a Day. Sponsorship supports the production of Life With a Difference, but does not influence editorial content or guest perspectives. Learn more about A Life in a Day Website: https://alifeinaday.co.uk You can also find Mark and the team on LinkedIn. A Life in a Day run regular virtual taster sessions to give a short interactive introduction to how the experience works. 00:00 Intro 00:09 Mark Doyle introduces himself and A Life in a Day 00:48 How Andy and Mark connected at Patients as Partners 01:37 What A Life in a Day is, mission and purpose 02:25 Andy’s experience, why it isn’t gimmicky, emotional impact 03:33 Where the idea came from, how it started (2016) 04:56 First conditions, Crohn’s disease, then heart failure and oncology 06:30 Capturing the real grit, ethics, starting with patient stories 09:18 How the experience works, app, calls, kit, wearables, sensations 13:40 Why 24 hours matters, challenges across work, home, relationships 14:08 Challenges growing a unique product, access and funding for HCPs 16:21 Measuring success, learning, actions, and ROI for organisations 18:13 What changes after the experience, workshops and implementation 20:28 If funding was unlimited, reaching clinicians and students globally 32:53 Conditions that surprise people most, asthma, obesity, diabetes 35:09 Severity spectrum and why names can mislead public understanding 36:23 Empathy as a driver for action and change 37:32 Why patients often don’t have space to tell the full story 39:01 Why living it beats hearing it, the next step in advocacy 40:31 Five-year vision, making it part of healthcare education 42:14 How to get involved, taster sessions, website and LinkedIn 43:12 Closing thanks Social media: Instagram https://www.instagram.com/lifewithadifferencepodcast/ TikTok https://www.tiktok.com/@lifewithadifference Linkedin https://www.linkedin.com/in/andrew-collinson/ Please get in touch if I can help in any way Blog: https://www.lifewithadifference.info/ buymeacoffee.com/lifewithadifference