Our Impossible to Ignore campaign: Richard and Terri04 August 2020
Our Impossible to Ignore campaign is calling on all UK governments to make sure the needs of people with arthritis are addressed as they plan to restart NHS services.
With appointments, treatments and joint replacement surgery delayed, thousands of people have been left waiting in pain with no clear idea of when things will return to normal. We caught up with Richard and Terri to find out how they have been affected.
“No one could have predicted this, but I’m not impressed.”
I was seriously injured in an accident at work over a decade ago, which has led to osteoarthritis in multiple joints. It forced me to leave my career as a builder and go through over 20 operations to repair some of the damage.
The situation I’m in today is all because of my left hip. It was replaced for the first time in 2018 but the joint became infected, so it was removed, and I was put on the waiting list for a two-stage replacement in October 2019. The second stage of the surgery ended up being cancelled because of the pandemic.
I’ve not spoken to my consultant since my operation was cancelled. All I had was a brief phone call from the department saying I’ll be seen in October – that will be almost one year of waiting since first being told I need the replacement.
"Work is one of the things I miss the most; I can’t wait to go back."
It’s been 14 months since I was signed off sick. I can’t do my hobbies either. In my spare time, I’d usually be in the workshop building something, using my hands and being active. But now I’m just sitting all the time.
I haven’t even seen the village I live in because my wife and I moved here while I was having surgery, and I haven’t been able to walk since. I’m looking forward to walking around and meeting the neighbours.
This whole thing has really kicked the crap out of me. I’m in constant pain and can already feel the pain creeping up in my other joints. My shoulders are particularly bad because I’ve been on crutches for so long.
Thankfully I have my wife; she helps me with the everyday stuff. But I rely on her and other people for everything, and now I just want my independence back.
“I’m in a limbo, waiting for my treatment to start.”
Terri is 23 and was recently diagnosed with inflammatory spondyloarthritis. Her planned treatment was about to begin after two years of waiting for a diagnosis, but it was then cancelled due to coronavirus.
In December 2019 I received the letter confirming my diagnosis. After two years of appointments and receiving many other diagnoses, it was not the one I was expecting. The first line of treatment my rheumatologist suggested was NSAIDs. I tried these, but they didn’t provide any relief.
I had a follow up appointment in March with a fantastic rheumatology nurse who referred me to try a CT-guided intra articular steroid injection. She also discussed the possibility of trying biologics if the injection didn’t work.
"I never expected to have arthritis – which isn’t something that has a quick fix."
But, I finally started to feel like I was getting somewhere with this new treatment plan. I had waited for so long to get to this point.
But, only a week later, the referral for the injection had to be postponed due to Covid, as all non-urgent hospital treatments were cancelled. Starting on biologics wasn’t an option either, because I would need lots of appointments and blood tests. My nurse said to get in touch when it seemed that everything was getting back to normal, incase my referral got lost in the system with all the waiting lists. I was given some treatments to try in the meantime, but they were never really expected to work, and they haven’t.
Now I am in limbo, just waiting for my treatment to resume. I last spoke to one of the rheumatology nurses in June and was assured that I was on the waiting list, but that it was a long one and I would just have to wait.
The pain is unrelenting – sometimes sharp and sudden, but mostly a constant dull ache that I can’t ignore. I’m now finding that I’m unable to do basic stuff easily, which is hard to come to terms with.
I’ve done my best to hold on throughout the pandemic, but with my symptoms and pain getting worse, I really need things to start up soon. I just want to know what is going to happen. Right now, it feels like it will go on like this forever.
We’ve had an exciting kick off to the campaign across the UK, and as lockdown continues to ease and steps towards COVID-19 recovery continue to be taken, we’ll continue pushing to keep arthritis on the agenda.
People like Richard and Terri can’t ignore their pain. We need to let the government and the NHS know that neither can they.
We’re here whenever you need us.
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