The Cost of Chronic Illness

You’d have to be living under a rock if you missed the recent media coverage of Kate Garraway’s documentary. In it, she shed light on the staggering cost and intensity of her late husband’s round-the-clock care, revealing that the family was spending £16,000 per month. This left Garraway in debt despite earning a generous salary from ITV and Smooth Radio. Derek’s care costs were equivalent to a minimum wage or apprentice salary. (Please don’t quote me on that.) The documentary struck a chord with me because it addresses the financial burden that individuals living with chronic illnesses bear from the moment they’re discharged from their physician’s care. These are costs that the average patient may not even consider, so let’s delve into the discussion.

As many of you may know, in 2017, I was diagnosed with ME and neuropathy—two relapsing and remitting conditions that can strike without warning. Unfortunately, the support offered by the NHS isn’t always life-changing. If, like me, you’ve attended a pain clinic, you’ll understand the limited advice they provide. Under the NHS, I’ve been offered cognitive behavioural therapy (CBT)—and more CBT. The lack of variety and depth in treatment options is disheartening. When I experienced a relapse three years later, I was astonished by the lack of progress in supporting patients living with chronic pain.

Watching Kate Garraway speak to experts in Health and Social Care prompted me to document every “treatment” I’ve pursued in my journey towards remission and maintaining it. Brace yourselves, folks—here are the numbers. Please note that these are rough calculations; I’m no mathematician!

Massage Therapy (5 years, once or twice per month): £2,400

Private Cognitive Behavioural Therapy, CBT (5 years, two per month): £1,920

Pain medication prescriptions: £464

Train tickets for London hospitals: £182

Kinesiology: £50

Total: £5,016

I was stunned when I tallied my health expenditure. I had invested my own money in the hope of finding peace. You’ll notice that I sought private CBT. This decision stemmed from realising that the eight sessions offered to me on the NHS every two years wouldn’t adequately support my long-term emotional well-being. Mental health is not linear, and over the past five years, I’ve experienced a rollercoaster of challenges—from relapses and breakups to redundancy and grief.

In 2021, at the height of my relapse, I requested a referral to NHS CBT. I was seen in 2022— a year after my GP made the referral, following a mental health crisis. The waiting time is a much larger issue that I cannot adequately address here. But what I can say is that as patients, we often find ourselves advocating for our own support and seeking help privately—at our own expense.

In my research, I’ve found that my investment in health care is mirrored by many other patients. Friends living with chronic conditions such as Endometriosis, Elders Danlos Syndrome, ADHD, and Chronic Migraines have similar stories. Since the pandemic, there has been a surge in eating disorder referrals, resulting in extended waiting times and leaving patients vulnerable to subpar treatment. For private eating disorder support, patients can pay £300 per session. The private healthcare system serves as a lifeline for those in need of a diagnosis or immediate support.

A study revealed that two in five patients living with a chronic illness lose at least 10% of their earnings, and 700,000 chronically ill people end up unemployed. Even those who continue working see their annual take-home pay drop dramatically—by £1,400 per year, to be exact. These costs don’t even encompass all treatment-related expenses. During my relapse, I spent £182 on transportation to Kings College Hospital and St. Thomas’ Hospital alone. I want to add, that neither hospital gave me the clarity worth the cost of transport.

Before writing this article, I spoke with friends who share similar health conditions. We found solace in knowing that we aren’t alone in spending hundreds in pursuit of pain relief or symptom management. However, our collective spending doesn’t negate the fact that we’ve had to fund our lives and needs privately due to an underpaid and under-supported healthcare system. I was speaking to my massage therapist aka my physio about the fact in the eight years I’ve experienced pain, my GP, neurologist and pain consultant never recommended or listed massage being a suitable and possible symptom manager.

My costs are minimal in comparison to the astronomical expenses Garraway has incurred and continues to face. Regardless of her earnings, she has shone a glaring spotlight on the challenges faced by patients and the care system across the UK. None of us ever anticipate needing additional care beyond our family’s support, but the reality is, we’re all just one accident, surgical mishap, or diagnosis away from it. I never imagined that, as of 2019, I would spend £5,016 managing a health condition.

Allow me to leave you with one thought that has lingered in my mind since watching the documentary—though I’m paraphrasing for the sake of clarity, not quoting directly from Kate’s words. “Derek has sadly passed away, but imagine if he required this level of care when he was younger and relatively stable with his condition. The costs would likely escalate exponentially. The care system fails to address the needs of the younger generation requiring round-the-clock care for basic functions.”

The cost of chronic illness extends far beyond financial burdens—it encompasses emotional, physical, and societal challenges that demand attention and action. As we continue to navigate these complexities, let’s advocate for a healthcare system that supports all patients, regardless of age, condition, or circumstance.

Leave a Comment

Your email address will not be published. Required fields are marked *

  • I must admit I have never added all my costs up …….. scary
    Ev I need your help/advice on something please (can’t believe it is 2+ years since we were recording that chat for ME awareness week and I was in Mallorca!!)
    Please can you contact me?