Diven’s story: paying to breathe

Diven is married and works as an estimator in construction. He has Interstitial lung disease with diffuse systemic sclerosis.
“It’s ironic that I was probably the fittest I’d ever been when I first noticed the symptoms of my lung condition. It was summer 2019. I was climbing the staircase to the train platform on my way to work, but found myself completely out of breath.

“It took over a year to get a diagnosis, despite how debilitating my breathing problems became.

“The news that I had an incurable autoimmune condition was a massive shock. I’d always been sporty and active, with no history of breathing problems. I was given six months of chemotherapy at the start of 2021 to try and stop my immune system attacking my lungs.

“Having to give up sports while we got to the bottom of things and started treatment had a massive impact on me. I put on weight but the mental impact was probably worse than the physical one. I felt isolated from my friends, as sport was the focus of my social life.

“Going onto steroids and immunosuppressants has stabilised my lung function and last October, I was able to return to the gym. I’m socialising more now – I’ll see friends if they do lateral flow tests and I’ll sit near an open window, even if it is cold.

“My condition isn’t common and it can be hard to know where to turn for support. It’s very much a hidden disability, I look perfectly well until I struggle to breathe.

“I ran the London Marathon in 2022 with an oxygen tank, which was the most incredible experience, and I’m still taking part in events to raise money and awareness. 

Prescription charges
“Prescription costs add up when you have a long-term condition. Depending on my health I’ll be on three or four different medications at a time, and I’ll have to take those medications for the rest of my life.

“The rules for paying for prescriptions aren’t always clear to anyone, even health professionals! 

“When I was first diagnosed I had six months of chemotherapy, then I was moved onto immunosuppressant tablets when that didn’t work. For a while I wasn’t charged for my medication, then one day at the pharmacy at the hospital when I went to pick up my medication, I was asked to pay – but nobody could tell me why or whether I really should be paying.

“This uncertainty continued with future visits, sometimes being charged and sometimes not, until I decided to use the prescription prepayment certificate so I wouldn’t suddenly be charged a large amount of money. It was incredibly frustrating not knowing what was going on.

“I already knew about the certificate from other people, but not everyone is aware of it. And when you’ve been diagnosed with a serious long-term condition you’re not really in the right head space to think about these things.
 
“More needs to be done to make sure people can access the prepayment certificate, but even then there will be people who still can’t afford their medication.

“My condition is incurable, so it’s not as if I’m even paying to get better. I’m paying to try and stay stable. The system is unfair, and it doesn’t make sense - if you can’t afford your medication your condition gets worse, which in turn puts more stress on the health service. People get stuck in a vicious circle.

"The list of conditions on the prescription exemption list hasn’t been reviewed in a long time since its creation more than 50 years ago (in 1968), and it should be! 

“A lot has changed in the last few decades and there are so many more conditions now where people will have to take medicine their entire life. If for some reason the government really doesn’t think that reviewing the list is possible, then we need something else in place to help people.
​
“I want the government and people in the health system to listen to patients. We know what we need to stay well because we’re living through it, and it feels as though the people making the decisions just don’t get it.”