When we launched our first-ever UK Hangout, I wasn’t sure what to expect. What I discovered was a powerful reminder that peripheral artery disease (PAD) creates similar challenges for patients worldwide, even as healthcare systems differ dramatically.
Joined by my fantastic co-host Mike H. (a UK native currently living in Canada) and our friend Alan from the Midwest United States, our conversation quickly revealed both the universal aspects of the PAD journey and the stark differences in care access across healthcare systems.
The Wait Time Reality: UK vs. US Healthcare
One of the most striking revelations from our discussion was the drastically different timelines patients face when seeking specialized care. Mike shared his frustrating experience with the UK’s National Health Service (NHS):
“My referral went in in January, and I’m still yet to see a vascular consultant,” Mike explained. “I had to take myself into an A&E department because I was really struggling, and they referred me to a vascular hot clinic. That’s the only way I was actually able to see a vascular doctor.”
For many UK patients, the wait to see a specialist can stretch from 6 to 12 months—precious time during which PAD can progress significantly. This reality creates what Mike described as “living your life in fear” while waiting for proper care.
In contrast, Alan’s experience in the US healthcare system (with good insurance coverage) provides a stark contrast:
“I get an ultrasound of both sides all the way down to the foot, and I see the doctor that same day right after,” Alan explained about his quarterly vascular appointments. He even mentioned that his doctors have given him their cell phone numbers for emergencies.
However, both Mike and I acknowledged that this level of access isn’t universal in the US either, with insurance coverage creating significant disparities in care availability.
The “Discharge” Dilemma
Another fascinating difference emerged when discussing long-term specialist care. Mike explained that in the UK system, his mother (who had an amputation due to PAD over 12 years ago) was eventually “discharged” from vascular care back to her general practitioner.
This concept was so foreign to our US participants that our YouTube producer asked for clarification. Mike explained: “The vascular doctor said that he’s willing to see her again in the future if she does have problems with her other leg, but it will be a referral to go through the GP.”
This “starting over” approach contrasts sharply with the continuous specialist care model in the US, where patients with severe PAD remain under specialist supervision indefinitely.
Alan pointed out the potential dangers of this approach: “In that length of time, I could have lost a leg taking that route easily, quickly.”
Phantom Sensations and Surprising Discoveries
Some of the most inspiring moments from our conversation came when Alan, who has had amputations due to PAD, shared his experiences with phantom limb sensations—and how they might actually be beneficial.
“I even discovered that even my amputated leg, I can move my foot, my phantom foot that’s not there, and it engages the same muscles that it does on my right leg,” Alan explained.
This insight has proven valuable in his rehabilitation and ongoing PAD management. Even more remarkably, Alan had recently received good news about collateral growth in his remaining leg—proof that the body can adapt and create new pathways for blood flow with consistent movement.
Mike connected this to his mother’s experience: “My mom always talks about that she can still get phantom pains in an amputated leg. She can still feel her toes wiggling if she tells her brain to do a certain thing.”
This sharing of experiences across continents demonstrates the power of patient communities to discover and share insights that even medical professionals might miss.
The Emotional Roller Coaster of PAD
Beyond the physical aspects, our conversation turned to the psychological impact of living with PAD. Mike spoke candidly about the emotional challenges:
“I have one question that I always have, which is an unanswered question… why me? Why has it happened to me? I’ve done everything good in life… I’ve literally done nothing in life to hurt anybody. And I’m just like, why has this happened to me?”
This heartfelt question resonated with everyone on the call. Alan shared his own perspective on the emotional journey:
“I’ve gotten stronger. I’ve become more patient… You have to live your life, not the disease. Once you live the disease and you stay there, it’s a spiral right off the road that’s real hard to get back on.”
We discussed how the PAD journey mirrors the classic five stages of grief: denial, anger, bargaining, depression, and acceptance. But as Alan pointed out, “they don’t happen in sequence like that… you reach a peak and you can fall right back two stages.”
This understanding—that emotional setbacks are normal and part of the process—provides comfort to patients who might otherwise feel they’re failing when they struggle.
Medical Terminology Simplified
One amusing cultural difference emerged when we discussed medical procedures. As I explained various PAD interventions, I used the term “roto-rooting” to describe atherectomy procedures that clean out plaque from arteries.
To my surprise, our UK participants weren’t familiar with this colloquialism. We had a good laugh explaining that Roto-Rooter is a U.S. plumbing company that specializes in clearing clogged drains—a fitting analogy for clearing blocked arteries!
This led to a deeper discussion about the importance of medical professionals using accessible language while still educating patients properly. I expressed my belief that “a more educated patient is a more compliant patient, a less anxious patient.”
We went on to explain various procedures in detail:
- Diagnostic angiograms (imaging tests that visualize blockages)
- Interventional angiograms (procedures that treat blockages)
- Atherectomy devices (lasers, drills, and rotational “sanders” that remove plaque)
- Angioplasty (using balloons to expand narrowed arteries)
- Stenting (placing mesh tubes to keep arteries open)
The Power of Community Support
Perhaps the most beautiful aspect of our hangout was witnessing the support network forming in real-time. When Tracy joined our conversation later, she immediately connected with Mike, who revealed:
“I’ve been talking to Tracy since she was diagnosed. I was one of the first people to reach out to Tracy. So I do talk to her at least once a week. We keep in touch with each other and kind of spur each other on.”
Tracy agreed: “She helps me. I know that she says that I help her a lot, but she does help me as well.”
This mutual support system proves invaluable for patients navigating the complex physical and emotional aspects of PAD. Alan has become a mentor figure for Mike, providing reassurance and perspective from someone further along in the PAD journey.
Celebrating Victories
We made sure to acknowledge important milestones, like Tracy’s five weeks of being smoke-free after previously smoking 40-50 cigarettes daily—an achievement that’s already improving her circulation measurements.
“My TBI was zero when I got diagnosed with CLI. It’s now 0.48%,” Tracy shared, referring to her toe-brachial index measurement. While still below ideal levels, this marked improvement demonstrates how lifestyle changes can significantly impact PAD progression.
Similarly, Mike proudly shared how he immediately quit smoking after his vascular consultation and increased his exercise regimen. These positive changes, supported by community encouragement, demonstrate the power of peer support in improving PAD outcomes.
Looking Forward
As we wrapped up our first UK Hangout, everyone agreed these conversations should continue weekly. The cross-border exchange of experiences, emotional support, and practical tips benefits everyone involved—and by sharing publicly, we hope to reach other PAD patients who might feel isolated in their journey.
This inaugural session proved that while healthcare systems may differ dramatically, the human experience of living with PAD creates a common bond that transcends borders. Together, we’re raising our voices to improve PAD awareness, advocate for better care systems, and support each other through the physical and emotional challenges of this disease.
If you’re living with PAD or supporting someone who is, I invite you to join our growing community. Email info@padhelp.org to get on our list for future hangouts, or find us on YouTube by searching “The Way to My Heart.”
For immediate support with PAD symptoms like leg pain, cramping, or cold feet, call our Leg Saver hotline at 1-833-PAD-LEGS.