October 12-16 was Legs Matter Awareness Week—5 days filled with virtual educational events from Pilates and mindfulness to live discussions with vascular consultants. We heard sobering stories from brave people keen to share their experiences via blogs or film, and social media platforms were buzzing with comments and ‘likes’. The focus of the week was to raise awareness of lower limb and foot problems across the public domain and to make available a variety of resources that would enable people to make informed decisions about their care.
In many cases, having a better understanding of their underlying condition appears to increase the likelihood of patients being an active partner in their care and, more often, patients are being supported to self-care as a solution to managing the huge burden of leg ulceration on the NHS (Atkin, 2019; Hopkins, 2020).
We are fortunate to have some of these knowledgeable patient partners standing alongside us as part of the Legs Matter coalition and they have helped to shape our strategy and decision-making based on their personal, real-life experiences.
The following is a blog from one of the Legs Matter patient partners, J, reproduced with his permission. It describes his experience of managing his lower limb condition during the hot weather earlier this year. Although an enjoyable and entertaining read, it will hopefully trigger some reflection on the hidden messages that clinicians can learn from.
Confessions of a leg ulcer patient
It lasted for 8 dreadful years—three large, severe venous leg ulcers crippling both my legs. After unremitting NHS treatments, my carers brought about healing, and since then I have enjoyed 3 years ulcer-free … until now. Suddenly my enemy has struck back and a leg ulcer has erupted again. How and why?
Here is my answer, which is partly a confession, a ‘mea culpa’.
The sudden, unforeseen onset of this new ulcer was very tangentially the result of the global coronavirus pandemic. A bigger contributory factor was Britain's uncharacteristically baking hot summer. Between them they formed a catalyst.
My own feeble shortcomings far outweighed the role of coronavirus or our scorching hot summer, though I mention them in passing. It wasn't entirely my fault—just mostly.
When the COVID-19 lockdown was relaxed on 4 July, as Britain sweltered in Saharan heat, the liberated nation headed en masse for the coast—sea, sunshine, beaches, fish and chips—and I wanted to answer that siren call as much as everyone else.
However, I am in the third phase of venous leg ulcer treatment—lifelong post-healing condition management. Sometimes it's called chronic condition self-care.
Dear reader, if you have a venous leg ulcer, I hope you reach phase III. It's a fairly straightforward regimen: you must follow the usual advice about healthy lifestyle, diet, weight, exercise, plus the insistence on keeping your leg(s) elevated as much as possible, and you are issued with some specially made compression hosiery garments to wear on your leg(s) at all times outside the bed. These are your lifelong weapons to keep ulcers at bay—your very own compression stockings or socks.
On day one of my post-lockdown stay on the wonderful north Kent coast, I whipped on some shorts, a T-shirt, Panama hat (I'm old-fashioned), and sunglasses, grabbed my trunks and a towel, and headed for the beach.
On my feet were a pair of deck shoes. The thought occurred fleetingly whether I should put my compression socks on. ‘I'll be okay, lying down sunbathing, swimming, getting a blast of vitamin D from the sun's rays. How can I wear them on a beach anyway? Just for once, surely, I can be like everyone else, carefree, relaxed and minimally dressed?’ this imp on my shoulder whispered in my ear.
One day turned into the next and the next and my stockings stayed off for 5 days until, returning home, I felt a tingling around my right ankle. It was a bit reddish and a tiny scab had appeared on a former ulcer wound site, about the size of a 5p piece.
Using supplies from my NHS carers which I kept at home for this sort of emergency, I slapped an iodine dressing on and did my best to apply compression bandaging like my nurses had done so often for me, from my toes to my knee. My efforts at bandaging were nowhere near as adept and effective as those of my NHS nurses, but I tried for a couple of days. Upon removal, I saw the 5p had doubled to 10p in size. Still crusty but dry.
So, I changed to a silver dressing and put my compression stocking on, instead of bandages. Things weren't right though. By the end of the second week, the area around the 10p was swollen and crimson, with outer patches of blackened skin. The dressing showed brownish seepage and there was creeping soreness.
My last amateur bid to stave off a humiliating plea to the NHS for help once more, entirely due to my own self-indulgent weakness, saw me apply a medical honey dressing, under some bandaging. Within hours pain exploded. Off came the bandages. OMG! (in text speak), there was a blood-red ulcer staring defiantly back at me. ‘Ha, you fool, you had your fun on the beach—now it's my turn,’ it seemed to spit scornfully at me. I felt like Faust taunted by Mephistopheles, realising the price I must pay as my end of the bargain. Hell awaited me.
It was simple, pathetic really. Succumbing repeatedly over 5 days to the temptation to return to my pre-ulcer life, and abandon these tedious compression stockings for some care-free fun on a beach, had allowed venous malfunction to build up, inevitably followed by ulceration.
At this point, when my fate lay in the balance (depression could have sunk me into inertia), my gnawing sense of despair and shame was dispelled by Lady Luck. I did pluck up some courage and rang my NHS ulcer clinic and they had just got a cancellation for the very next day—can I make it? Can I make it? I will crawl there on my belly, I'll swim across the river Thames if there's no transport, you bet I can make it.
Today, I am back in the swing of intensive treatment, which is happily going remarkably well. And I have learnt my lesson.
It is absolutely vital to adopt the (modest) demands to care for yourself once your ulcer(s) have healed and you've entered phase III. Chief among those demands being to always wear your compression stockings.
We leg ulcer veterans have no choice if we want to prevent another ulcer but to comply with complete adherence to this discipline—every day we must pull up those compression socks firmly. For myself at least, the truth of this message has been proven beyond doubt. There are no excuses.
If you have any niggles about wearing your stockings, whatever you think is causing your difficulty can be overcome. Maybe, for instance, like me, you get nasty eczema and you feel the stockings make it worse.
Firstly, it is your venous circulation problems that make eczema worse. Secondly, there are solutions: there are many soothing linings, even silk, and emollients, ointments and creams that will relieve the eczema. Talk to your NHS carers.
Do you struggle with getting into and out of your stockings? Believe me, there are plenty of devices to make it as easy as putting on a glove. Ask your NHS carers.
If you get a squeezing feeling, or lumpiness, or any other sort of ‘wardrobe failure’, side-effect or discomfort, your stockings may not fit you. Your NHS carers will measure you up and check if you need a new set with adjusted measurements.
Our legs do change shape. Our stockings get wear and tear. You ought to check how they fit with your NHS carers and renew them anyway every 4–6 months on average. And you will get some lovely, neat-fitting, hand-tailored pairs of new socks, mostly crafted in Germany and Italy to extremely high-quality standards on NHS prescription.
I'll end this cautionary tale on a happy note. The NHS-affiliated clinic where I am blessed to be a patient, Accelerate CIC, got right on top of my recent, self-inflicted condition with a comprehensive, intensive and superbly delivered treatment plan involving diagnosis, meds, pain management, infection control, hygiene, very high level compression bandaging, advice, and sympathy.
They haven't even torn me off a strip for my stupidity (yet). I'm 3 weeks into a 6-week course of treatment and there has been great progress so far, at the halfway mark. At the current progress rate, the wound site could well be healed up within 6 weeks—6 weeks! Last time it took 7 years! I am a very lucky man, and duly humbled.
From now on, for me, it's compression socks all the way, every day—and I am going to sock it to my ulcer-prone legs.
Patient partner, Legs Matter campaign
Summary
I think what this blog has highlighted is that we are all human, and it doesn't matter how knowledgeable you are about your condition, the treatment or maintenance modalities used to manage venous disease can be challenging and this may cause us to make decisions that aren't always in our best interests.
There is a huge longing for ‘normality’ and clinicians often underestimate the impact of having to wear compression garments on a person's quality of life. Who really would want to wear compression hosiery when on the beach in hot weather?
J was fully aware of the consequences of not wearing his hosiery but chose to ignore this because he sought a moment of normality. He possibly rationalised why it would be all right to do this by thinking ‘another day won't hurt; I'll wear it tomorrow’. These are all reasonable thought processes and fully understandable given the situation.
Falling off the compression wagon may happen and that is OK. As clinicians we need to acknowledge that this is inevitable for some people and reinforce the importance of seeking early intervention if problems occur. Many will be self-caring at this point so there needs to be a clear, efficient process in place for patients to contact the service to be seen. It is important that we help patients find flexible ways of managing their condition through difficult times such as holidays. We certainly should not judge or criticise but instead put ourselves in their shoes, show understanding and empathy and discourage the notion that it is ‘mea culpa’. If we are honest, we have all had one of those pesky imps on our shoulder at some time in our life.