Great Expectations

It’s staggering to learn that only half of people with a chronic illness are compliant with their medication. Even after 42 years of handling cystic fibrosis (CF)*, it’s hard to always get it right…

Wiki defines medical compliance (also adherence or capacitance) as the degree to which a patient correctly follows medical advice. Most commonly, it refers to medication or drug compliance, but it can also apply to other situations such as medical device use, self care, self-directed exercises, or therapy sessions. Compliance is commonly confused with concordance. Concordance is the process by which a patient and clinician make decisions together about treatment.
Worldwide, non-compliance is a major obstacle to the effective delivery of health care. In 2003 estimates from the World Health Organization indicated the startling fact that only about 50% of patients with chronic diseases living in developed countries follow treatment recommendations. Ten years on, a US Fox Business study highlighted that nothing had changed. Patients improperly taking their medication not only results in longer cure times, repeat doctor visits and more illnesses being spread, it’s also causing the US health-care system to hemorrhage money. According to The National Consumers League non-adherence costs the country more than $290 billion a year.

This lack of compliance is a global health problem that is of major relevance to the UK National Health Service (NHS). Non-compliance prevents patients from gaining access to the best treatment. This may be particularly problematic in chronic medical conditions, including current NHS priorities such as mental health, cancer, diabetes and respiratory illness.
It’s a huge predicament and there’s not one single good reason why people don’t take their medication. The Fox Business report stated that patients stray from their treatment regimes for a variety of reasons, with forgetfulness being the top reason – especially among patients taking multiple pills a day. The cost (in countries with no formal health service) and lack of education are also reasons people choose to be non-acquiescent. According to medical experts, if people don’t understand why they are taking the medication or can’t gauge the benefits, they are more apt to stop taking it, figuring they don’t need it or it’s not effective.

How do I compare?
I’m no paragon of virtue when it comes to meticulously taking every one of my prescribed meds. I would count myself as being 98 per cent compliant with my huge assortment of treatments for CF and diabetes.

Over the course of this recent English summer (we actually got one this year!) I have had a number of occasions when my normal water-tight medical regime was breached. Top of the list were two beach trips during one week in July when I forgot to transfer my enzyme tablets (essential for me to digest my food) to my beach bag. The first time in Hampshire I decided to eat hardly any lunch to reduce the likely stomach ache; and five days later in Brighton with Katie on our tenth wedding anniversary. This time, on realising my mistake, I decided to get a taxi from the seafront back to the Park n’ Ride in order to raid my stash of enzymes in the car. That cab fare cost me £20 – a costly error!
Outside of these beach aberrations I have missed the odd nebuliser session through the busyness of life causing me to forget; while in a hurry to get out of the door I have been prone to only taking two of the four antibiotic inhaler blisters.

Sometimes I just can’t physically do my treatments due to life and work circumstances; like doing my physiotherapy when at an all-day work conference or when attending an after work social function. At work when in back to back meetings, fitting in the check of my blood sugar levels before lunch occasionally goes missing in action. A weekend event such as a wedding can also limit getting ‘everything done’.

I do try mitigating against any treatments I am likely to miss later in the day by doing my essential medication such as my nebuliser in the morning. At certain times, needs must. In the 1990’s, I did once conduct my heavy-duty intravenous treatment in the back room at a cousin’s wedding, ably supported by my mum.

Taking my own medicine
By way of contrast I made a rough calculation of a year’s worth of medicine intake versus what I actually missed. Annually I would be expected (prescribed) to take 15000 tablets, nebulise 364 times, undergo 750 physiotherapy sessions, inject diabetic insulin into myself over 1500 instances and prick my fingers on 1000 occasions to test my blood sugar levels.
In that same year, I reckon on average I would miss 40 tablets, 3 nebulisers, 15 physiotherapies, hardly any injections and the odd blood sugar test. So it’s not full compliance but close enough considering I have to fit all that in alongside a busy life working full-time as well as being a dad to Felix and husband to Katie.

Setting my own expectations
Through my lens, there’s a huge disparity between drug adherence if one has had a chronic health condition from an early age compared to developing an illness later in life, usually after a period of reasonably ‘normal’ health. I have had a life time to hone this utter devotion to medical duty. What is 40 tablets missed a year for me might be five pills for someone who is new to it all with a smaller drugs regime.

In order to make the treatments a way of life for me, I had to take personal responsibility for myself and I needed to own my care. After all these years, it been rather embedded into my sub-conscience. It’s like I have a radio voice, ‘Tim Wotton FM’, in my mind, constantly reminding me when the next medication is needed. “I’m about to do this, therefore I need to do that before, during and after.” “You’ve just done this, now you need to do this.” Sometimes if feels like I’ve got the computer HAL from the film ‘2001: A Space Odyssey’ in my head. “I wouldn’t forget that tablet if I were you Tim!”

Early on with a new drug I look to catch myself doing the right thing; taking it even when no one was watching or by my side. One has to find a way to remind themselves – post-it notes around the house if nothing else works – until it becomes second nature and as routine as brushing one’s teeth. If I’m not entirely sure why I’ve been prescribed a particular medication, I feel empowered to ask my doctor a few pertinent questions to sanitize whether it’s the right one for me.

I like to bring some competition into it – mentally ticking myself off when I miss or forget part of my regime. Physically I will suffer as any missed treatment will cause a detrimental effect to my health. I know that I can’t teach CF and diabetes a lesson by not complying. However, it will surely teach me a harsh lesson if I don’t knuckle down.
Even when I do everything 100 per cent right I’m not content with the state of my health, so why would I want to jeopardise the health I could have? My mantra is that I’m only as healthy as my last treatment.

I try to be understated about my meds – showing the illness the right amount of respect and care without making the minutiae of it all-encompassing and overly obvious for those around me.

No one else can take those meds for me. The buck stops here. I try to make the illness live with me rather than me living with it. From bitter experience I don’t defy the medicine. Instead I look to defy the illness itself by adhering to the medical regime. A tricky balance can be found between doing your medicine and having a life – I certainly don’t forgo one to have the other.

The deepest motivation I have to not miss a trick is one based on the CF version of the film ‘Two Weeks Notice’ – what would happen to me if I stopped my treatments for just two weeks? How ill would I become? Even when I miss the odd treatment the effect on my health is pretty noticeable. I’m pretty sure that after two weeks of living without due diligence, I’d be in hospital and really struggling.

This awful thought provides me with enough commitment to be as close to 100 per cent medically compliant as is humanely possible. After all, no human is perfect.

I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign up (on the right hand side tab) if you have not already done so.

Yours cup half full.
Tim
Tim Wotton

* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.