Breaking it Down – A Multiple Sclerosis Podcast
Episode: What is Advanced MS?
Date: February 17, 2025
Hosts: Helena and Nick (MS Trust)
Guests: Mark Webb (lives with Advanced MS), Jen Warrior (carer), Michelle Black (Advanced MS Champion Nurse)
Episode Overview
This episode dives deep into the realities of “advanced MS”—what it means, how it affects people’s lives, and the crucial support required. It features firsthand perspectives from Mark Webb, who lives with advanced MS, and Jen Warrior, who cared for her husband with the condition for nearly 20 years, as well as expert input from Advanced MS Champion nurse Michelle Black. The episode emphasizes community support, holistic care, and practical advice, delivering both professional insights and very personal stories.
Key Discussion Points and Insights
1. Defining Advanced MS (00:53–02:24)
- Not a type, but a stage: Advanced MS refers not to a specific MS subtype, but to the level of symptom burden, complexity, and support needs.
- "Advanced MS is a description of the level of burden and difficulties that MS is causing you, rather than the type of MS you have." – Helena [00:53]
- Typical progression into advanced MS is gradual, not sudden.
2. Mark Webb’s Experience Living With Advanced MS
Introduction and MS Journey (02:31–07:38)
- Mark, 56, medically retired, formerly worked in corporate roles at Disney, David Lloyd, and Dixon’s (Currys). Became a full-time public speaker and activist after leaving paid employment.
- Progressed from relapsing-remitting to secondary progressive MS about 5–6 years ago.
- Now full-time wheelchair user, limited mobility in arms, uses suprapubic catheter, cognitive issues and chronic fatigue, but no depression or optic neuritis.
- "I'm a wheelchair user... I can't walk a step anymore and my left arm and my left hand is scrunched up now and my right hand is scrunching up..." – Mark [04:10]
Embracing the ‘Advanced’ Label (05:44–07:25)
- Identifies as having advanced MS, scoring 8–8.5 on the EDSS scale.
- Transitioned to the term during/after lockdown, when function declined further (lost ability to drive, increased mobility loss).
Accessing Care and Services (07:25–10:25)
- Participating in MS drug trials (Chariot MS, MS Stat 2) brings additional support, but recognizes others feel “on the shelf” when standard treatments stop working.
- Early in his journey, he felt under-treated; now sees importance of getting involved in research for both personal and wider benefit.
Self-Management and Staying Engaged (10:25–12:43)
- Prioritizes community, humor, and maintaining energy through activities like indoor skydiving, (formerly) wheelchair rugby, and public speaking.
- “I have this word... nonsensing... just trying to find activities in between the fatigue... that keep me just buzzing.” – Mark [11:30]
Support Network (12:52–15:30)
- NHS-provided carers, part-time housekeeper/caregiver, MS nurse, neurologist; previously attended specialist MS centers when able.
- Learns Yoruba from carers; maintains household routines adapted to his needs.
Words of Wisdom (15:30–21:06)
- Focuses on acceptance, not “battle” metaphors.
- “I don’t think it’s a fight now... It’s a kind of acceptance of my condition and living with it and working around it rather than bashing my head against it every day.” – Mark [15:45]
- Encourages seeking new opportunities and living in the present.
- “Look at what’s good and what you still can do rather than grieving in the past as to what you can’t do.” – Mark [17:14]
- Advocates getting “a bit shouty” if needed to get care and recommends joining clinical trials to maintain links with services.
Notable Quotes:
- “I’m not going to criticize people who call themselves MS warriors... but I don’t subscribe to that. Just like, should I ever get cancer, I don’t want to be talked about as battling with cancer or eventually losing my battle with cancer.” – Mark [15:45]
Where to Find Mark (21:32–22:30)
- Active on LinkedIn ("Mark Webb + Dixon's and Disney"), Instagram (@markwebb99), dormant blog: onemanandhiscatheters.com
3. Carer’s Perspective – Jen’s Story
Background and Becoming a Carer (23:50–26:10)
- Jen met her late husband Dave online; he disclosed his MS early. She became his full-time carer as his condition deteriorated.
- "I pretty much fell into it right from meeting Dave... I didn't know anything about [MS] at the time." – Jen [24:45]
Daily Life and Adjustments (26:21–28:12)
- Adapted routines around Dave’s needs: prepping his items each morning, managing medical needs, helping with mobility and personal care, balancing working life with caregiving.
- "You're not only living your life, you're living somebody else's life as well..." – Jen [28:26]
Emotional and Physical Challenges (29:03–31:52)
- Emotional toll: isolation, impact on mental health, feeling only carers fully understand.
- Physical challenges: managing his larger size, physically difficult care tasks, occasional nights spent on the floor after falls.
- Support found via online MS/carer groups, helps share experiences and build camaraderie.
- "A good sense of humour is definitely a must if you’re a carer. It gets you out of a lot of dark places." – Jen [31:17]
Navigating Services (32:07–34:59)
- Benefited from local carers’ services (Encompass), counseling, grants for respite care, and yearly assessments to identify further help.
- Stressed importance of building relationships with all professionals, particularly neuro-rehabilitation consultant and dietitian; these connections aided access to continuing healthcare.
Advice for Carers (35:46–38:51)
- Make yourself known to local services and actively seek help.
- Encourage openness about needs and struggles with both mental and physical health.
- "If you start encountering any problems, get help. It's as simple as that... there is help out there and it's about speaking up and saying that you're struggling." – Jen [35:59, 36:07, 37:20]
- Maintain relationships with social workers, GPs, and all care team members for effective support if/when crises arise.
4. The Advanced MS Champion Program
Introduction to the Role (40:45–42:09)
- Michelle Black, Advanced MS Champion nurse at St. George’s Hospital, combines community nursing and MS specialization.
- Advanced MS Champions are placed in NHS trusts to bridge care gaps for those with complex needs.
What Makes Advanced MS Care Different? (42:25–46:35)
- Home-based, holistic care: every assessment is at the patient’s home, enabling a realistic understanding of needs and priorities.
- Champions coordinate services, ensure ongoing symptom review, organize multidisciplinary team (MDT) meetings with patients and families included.
Typical Symptoms and their Management (44:23–45:42)
- Cognitive impairment, mood changes, visual/hearing losses, speech/swallowing difficulties, weakness, spasticity, bladder/bowel issues, recurring infections, severe fatigue, and more.
- "Advanced MS is people who are severely affected by their MS... people who have complex symptoms, often multiple symptoms, which often require daily support." – Michelle [42:36]
Coordination and Advocacy (46:35–55:54)
- Champions act as the central point of contact, keeping care coordinated, advocating for patients, updating management plans, and reviewing medications.
- Strong focus on listening and identifying what matters most to patients and carers.
- "It's really about holistic care… pinpointing what their priorities are, not only looking after the person with advanced MS but also... their loved ones and carers." – Michelle [50:08]
- Carers’ support is a critical element—champions ensure carers’ needs are also addressed.
Practical Tips and Services (57:26–62:14)
- Importance of medication review, managing night symptoms (using OT/physio for sleep positioning), and pain management.
- Wide range of professionals may be involved: neurologists, MS nurses, neuro-rehab, speech and language, social care, dietitians, neuropsychology, palliative care, continence, urology, spasticity teams.
- MDT meetings often held at patients’ homes to ensure inclusion.
How to Access Support if You Don’t Have a Champion (62:14–64:35)
- MS nurses and GPs are key contacts if there’s no Advanced MS Champion locally.
- Carers can (and should) advocate on behalf of their loved ones; reach out to care agencies, social care, or hospital if needed.
- "If you're struggling... reach out to somebody, somebody who can advocate for you always... your GP, the MS team at your local hospital." – Michelle [63:24]
5. The Importance of Community and Support Networks
- Advanced MS can be isolating; MS Trust has created a private Facebook group for people with advanced MS and carers to connect.
- Peer support, both practical and emotional, is critical—a recurring theme across all interviews.
6. Closing Thoughts from Hosts
- Advanced MS affects a minority of the overall MS community, but those impacted often feel “neglected” or invisible in the system.
- Real stories, like those shared by Mark and Jen, are invaluable in understanding needs and reducing isolation.
- "Life can be so different for people living with advanced MS, so yeah, that was really powerful." – Nick [66:31]
- "We need to keep on talking... and connecting people with each other so they don’t feel isolated." – Helena [66:45]
Notable Quotes & Memorable Moments
- “I fight every day to function, but it's a kind of acceptance of my condition and living with it and working around it, rather than bashing my head against it every day.” – Mark Webb [15:45]
- “You're not only living your life, you're living somebody else's life as well, because you've constantly got to be thinking about, like, what they need and pre-empting situations.” – Jen [28:26]
- “Carers are amazing, you know, and they can contact the care agency and the care agency will know how to contact people from there.” – Michelle Black [63:24]
- “It is about speaking up and being brave and saying that you need help with things, and again, making sure that you've got those good relationships with people.” – Jen [37:57]
- "If you start encountering any problems, get help. It's as simple as that... there is help out there and it's about speaking up and saying that you're struggling." – Jen [35:59, 36:07, 37:20]
- “Being given the opportunity to be able to speak to somebody about how you're really feeling... is a very privileged place to be.” – Michelle [50:08]
Timestamps for Important Segments
- 00:53 — What is advanced MS? Introduction and definition
- 02:31 — Mark Webb introduction and MS journey
- 05:44 — Mark discusses identifying as “advanced MS”
- 07:38 — Mark on clinical trials and accessing services
- 10:25 — Self-management strategies and well-being
- 12:52 — Mark’s care team and daily routine
- 15:45 — Mark’s philosophy: acceptance, not “fighting”
- 23:50 — Jen’s carer perspective begins
- 24:45 — Becoming a carer: how support evolved
- 26:21 — Daily adjustments and challenges
- 29:03 — Managing emotional and physical challenges
- 31:17 — The necessity of humor for carers
- 32:07 — Navigating local support services
- 34:59 — Building relationships with healthcare professionals
- 35:59 — Practical carer tips: seek help, speak up
- 40:45 — Introduction to Advanced MS Champion, Michelle Black
- 42:36 — What is an Advanced MS Champion?
- 44:23 — Common advanced MS symptoms
- 46:35 — How Champions coordinate care, referrals
- 50:08 — Holistic and family-centered support
- 57:26 — Review of symptoms and medication management
- 59:48 — Range of MDT and community services
- 62:14 — How to access support if no Champion available
- 63:24 — Advocacy tips for carers
- 66:31–67:37 — Hosts’ closing reflections on the importance of support and community
Resources Mentioned
- MS Trust Advanced MS Care and Support Facebook Group
- Local carer services (example: Encompass Lancashire)
- MS Trust helpline (UK): 0800-03-23839 (Mon–Fri, 10am–4pm)
- Website: www.mstrust.org.uk
- Mark Webb: LinkedIn (“Mark Webb, Dixon’s Disney”), Instagram @markwebb99, blog "onemanandhiscatheters.com"
Summary Takeaways
- Advanced MS is defined by the complexity and severity of symptoms, not by subtype; it can impact people of all ages and progresses at varying rates.
- Lived experiences (Mark, Jen) reveal the importance of acceptance, adaptation, meaningful activity, support networks, and community for both people with MS and carers.
- Carers are vital to daily life and need their own sources of help. Building relationships with services, being persistent and outspoken, and seeking peer/community support are key.
- The Advanced MS Champion role provides integrated, personalized, home-based assessment and support—an evolving but vital development in the UK MS care landscape.
- For those feeling isolated or unsupported, advocacy, connection, and community engagement (including via the MS Trust and carers’ groups) are essential first steps.
For questions, support or to connect:
- MS Trust Helpline: 0800-03-23839
- MS Trust Advanced MS Facebook Group
- Contact via social media or website
This episode offers insight and compassion for those navigating the challenges of advanced MS—whether living with it or caring for someone who is—reminding listeners: you are not alone, and help is always within reach.