This Sunday marks the 50th anniversary of the prescription charges exemption list. This list has remained largely unchanged since 1968, which campaigners say has resulted in people living with long-term conditions paying high amounts for necessary medication. This week we hear from campaigners and people, in their words, on these costs on why they believe these charges should be scrapped.
Some mornings, I’m unable to move for an hour after I wake up due to stiffness in my joints. Once that’s subsided, I drag myself to the shower, my limbs feeling like they have 20kg weights attached to them. I struggle to dress myself and make breakfast before braving the task of putting on my shoes and getting out the door for the day.
When asked where it hurts most, my unwavering response is, “Everywhere.”
This might sound like the plight of someone in their 80s or older, but believe it or not, I’m 22 years old.
The reason for my morning struggle? Ankylosing spondylitis (AS), a form of inflammatory arthritis that most commonly affects the spine. It can also affect other joints, eyes, bowels, skin, lungs and heart. At best, AS can be managed with anti-inflammatory drugs and exercise, but at its worst, a combination of strong medications is necessary.
I was diagnosed with the condition three years ago, but showed symptoms from the age of 13.
I get on with life as best I can, studying at Manchester Metropolitan University and working part-time to support myself through uni. I have a huge amount of support from my partner, Ben, who is amazing. My university is understanding but teachers and peers will never know just how painful life can be with AS – even something as simple as sitting in the wrong type of chair can cause me incredible pain and discomfort. Despite this, I always try to maintain a positive, proactive attitude.
I have, of course, seen some dark times due to AS. Over the years I’ve been prescribed a huge number of different drugs to help with daily pain and fatigue. I’m also hypermobile, meaning my joints painfully move beyond the normal range, and I live with fibromyalgia, a long-term condition that causes pain all over my body. With all this going on, it took a long time for my consultant to find the right combination of drugs for me.
At one point, I was on seven different drugs to handle my condition. The monthly cost of these prescriptions was £61.60 – a staggering sum for a student working part-time. As a result, I often skipped my medication for two to three weeks at a time, which meant I missed lectures because of pain and my inability to move.
I don’t really go on nights out anymore as the fatigue levels are just so strong, but when I was first at university, I definitely struggled to fund the student lifestyle as well as my prescriptions. I was often torn between going out with friends while battling through the pain, knowing I might run out of tablets, and staying in, becoming isolated. It was incredibly hard at a time when I really needed to make friends.
I did once purchase a prepayment certificate, which is like a season ticket for prescriptions over a set period, but it was a huge hit to my finances and I couldn’t afford it more than that once.
Without medication, so many people with ankylosing spondylitis like me struggle just to get through the day. That’s why I’m supporting the The Prescription Charges Coalition’s campaign for free prescriptions for everyone with a long-term condition. It’s crazy I have to compromise so much of my life, paying to manage a condition I certainly didn’t ask to have.
For more information on ankylosing spondylitis (axial spondyloarthritis) visit www.nass.co.uk