Christie and Joe raise awareness of arthritis on BBC Essex

BBC Essex radio host Ben Fryer interviews Christie and Joe to raise arthritis awareness

As part of a national campaign to raise awareness, 27-year-old Christie from Colchester in Essex living with psoriatic arthritis and Joe Levenson Assistant Director of UK Advocacy and Health Intelligence at Arthritis UK were invited to BBC Essex to discuss how difficult getting a diagnosis is for many and how getting the right treatment can be challenge with radio host Ben Fryer. Here is an transcript of how the interview went.

The interview excerpt

Ben Fryer, BBC Essex

"Arthritis doesn't just affect people of Audrey's generation. Christie is 27 years old. She is from Colchester. She's living with something called psoriatic arthritis, and is part of a national campaign to raise awareness. Now, Christie got in touch with us, saying she's trying to encourage people with symptoms to seek help and to tackle the stigma and isolation that people with a condition face. She joined me earlier today, alongside Joe Levenson, who is the Assistant Director UK Advocacy and Health Intelligence at Arthritis UK, and I asked Christie, by starting off just telling me about how she felt when she was diagnosed."

Christie 

"It was a bit of a shock to me as well, because I was one of them people that didn't realise that you could get arthritis at a young age, and kind of hearing the words arthritis when I went to my rheumatology appointment was really scary for me, because I didn't have much knowledge on it. I kind of thought that my life was over there and then and I was going to be completely disabled in a zimmer frame, everything like that."

"So it was such a shock for me when I got diagnosed, and especially with the lead up of how much pain I was in, I was completely immobile. I had to leave my job. I had to be basically bed bound for nearly two years. I had to crawl around the house to get to places. So honestly, it was a really scary time, because I thought I had something horrendous when I got diagnosed with arthritis. It was good and bad, because I was so happy that I finally had some kind of diagnosis, but also it was extremely scary, because I'd never heard of anyone young having this condition.

Ben Fryer, BBC Essex

"And that's that's huge, right? Christie, for you to go from how you were to then, you know, pretty much being immobile for two years. How big an impact was that on you and what support was there for you in that tough time?"

Christie

"Oh, it was absolutely massive change. I've always been relatively healthy. My whole life, I've had a few illnesses here and there, but I've been absolutely fine. So then when I started getting these symptoms, I mean, my first initial symptom was actually swelling in one of my fingers, and I went to the doctor's, and they said it was just going to be soft tissue swelling to keep putting ice on it. Putting ice on it. And I said, Okay, fair enough. Maybe I slept on it funny."

"But months and months after, this finger not going down, it was just it was getting worse, and then it went into my feet, so when my ankles both swelled up, like to the size of balloon now, absolutely massive, and I got something called plantar fasciitis at the same time, it's basically inflammation of, I think it's called the fascia joint. I think it's in the bottom of the heel. A lot of, again, a lot of older people get this. So again, it was quite uncommon to see me with this condition. And that's when it got to the point where I couldn't walk. And it was extremely scary, because I didn't know if I would have the ability to walk again, because I had no diagnosis at that point and I didn't have any support from anyone, really. It was about my mom was the only supportive person."

"But I was going to the doctor's with different things, plantar fasciitis, costochondritis, and there was no answers for me. And I was confused. I was scared, and just basically the biggest thing for me was obviously losing my mobility. I had to learn to walk again, which sounds insane, and it just people take walking for granted. They don't realise that when you lose your ability to walk, how much it means to you. So it was so scary to then have to relearn to walk with crutches, with a moon boot, with a walking stick, and me thinking I'm walking normally, and other people look at me and I'm still limping. So it was really scary, because I felt like I was normal, but clearly, from the outside perspective, it wasn't."

Ben Fryer, BBC Essex

"Yeah, Christie, stay there. I want to, I want to chat to, you know, the Christie of today, but let's just bring in Joe at this point, because Joe, you know, Christie's story, must be quite a common reaction, I guess, is it, no matter what age people are when they first find out and get diagnosed with arthritis?"

Joe Levenson, Arthritis UK

"Absolutely, being diagnosed with arthritis, particularly at a young age, can be a real shock to the system, particularly if people aren't aware that you can get arthritis at any age, and that's why it's so important, actually, to dispel the myths about arthritis, to recognise that for some people, it can be a life-changing condition, particularly if they don't get the right care and support. And we really need to sort of build awareness in society. We need to build awareness of arthritis, that it can affect people of all ages, but that the right support and treatment can be out there for people, which is why arthritis needs to be given a much greater priority in the country as a whole."

Ben Fryer, BBC Essex

"And I probe Joe on exactly what sort of priorities he is asking for. And also in we go back to Christie, who chats about her life now, following that battle with the diagnosis and the subsequent treatment. 4 in 10 people with arthritis go private because of the waits they have on the NHS."

"In discussion from Christie, she has been telling us about the psoriatic arthritis that she was diagnosed with. It took quite a while, 27 years old, really debilitating for her for a couple of years, and eventually, as we'll find out in this next part, she got some treatment, and now she feels a bit better about it all. And she's been chatting to me alongside Joe Levenson, who's Assistant Director in a department of Arthritis UK, and in this part, I asked him what he wants to see in terms of support for people like Christie."

Joe Levenson, Arthritis UK

"So lots of people still have to wait a very long time for an arthritis diagnosis, which is a real problem. It means people can be in pain without knowing why. It means they might need repeated GPL medical appointments to try and get to the bottom of what the issue is. And too often, their symptoms are ignored or overlooked or they're not taken seriously. So we'd like to see much greater awareness of arthritis, including with GPS and other healthcare professionals, so that even an arthritis diagnosis happens in a timely manner and it's then followed on by the right care, support and information."

"Now Arthritis UK, we're really well placed as a UK wide charity to help people so they're not struggling alone. We've got a helpline. There's lots of information on our website, and we will continue to advocate for arthritis to be taken seriously as a major public health issue up and down the country."

Ben Fryer, BBC Essex

"Because it's significant, right? Isn't it? There's a lot you know, pretty most of us probably know somebody that has a form of arthritis, if we, if we think about it."

Joe Levenson, Arthritis UK

"Absolutely and even with the fact that many people have to wait for a diagnosis every day, 1200 people in the UK are diagnosed with arthritis. 10 million of us have got a form of arthritis, and yet so many of us still don't understand what to do, what that means, how to get the right care and support and treatment. And for some people, arthritis can be life changing, but much less so if they're able to access the right information, the right treatment and the right support."

"And we're really grateful for Christie for sharing her story. I think it's only by people with arthritis, particularly younger people with arthritis, speaking out, speaking up, talking about the realities of living with arthritis, that we can expect people to understand what it's like."

Ben Fryer, BBC Essex

"How long are people waiting Joe for? What have you heard for a diagnosis?"

Joe Levenson, Arthritis UK

"People can be waiting years for a diagnosis. They can be passed from pillar to post. And I'm not downplaying the you know how complex it can be to arrive at a diagnosis, but that's why we need better training for GPS and health professionals. We also need the NHS to then step up and to be supported, to step up so that when someone does receive a diagnosis, they receive care and support and don't face a long wait."

"And we know that for various types of arthritis, people can wait a long time for treatment. For example, people who need hip replacements, knee replacements can be waiting up to a year in Essex, as they are in much of the rest of the country, for surgery that can be really life changing for them."

Ben Fryer, BBC Essex

"Christie, what was your what was your total wait? I mean, you gave us kind of a time frame, but what was your total wait?"

Christie

"So I would say from my first symptom, it was around I actually got in a lot faster than some people did, but I still rated around 11 months to get my actual diagnosis, but that was between being told all these different things that I had and not being put forward for for a rheumatology appointment. But I did actually. I got given basically they said I was going to go to podiatry, because that's my plantar fasciitis was my main issue with the arthritis, and I got put through for podiatry, and I didn't get that until two years later on, a year after my diagnosis of arthritis, and at that point, I was on medication. I was a lot better, and I had to go privately for podiatry because we we didn't know what to do. I couldn't walk. So luckily, my mum and dad were helping me pay out for private podiatry, because I wasn't getting seen by the NHS on the podiatry list. So at that point, when I did go, I was like, Well, I'm, I'm a lot better. Now I'll still have my appointment, because I want to know more into it. So I've still got issues. But at that point I could, I could walk again. So it was just, it just felt like a waste of time."

Ben Fryer, BBC Essex

"Yeah, Joe, she went private. I mean, I guess you must hear a bit of that as well. Do you Christie, going private?"

Joe Levenson, Arthritis UK

"We really do. And unfortunately, that's reality up and down the UK for some people, we recently surveyed over 8000 people across the UK living with arthritis, and four in 10 of those people said they'd incurred additional costs purely because they were living with arthritis. Many other people are locked out of the right care, treatment and supports. They simply can't afford it. Living with arthritis can be more expensive because you may need to, maybe to get taxes to places because you simply can't walk. You might not be able to you might need to pay for prescriptions, and you may need to pay for treatment, and this can't be acceptable. It really means that some people are being basically can't afford to be able to live a full life like the rest of us can. And that can't be fair. It can't be right, but it's also not in society's interests."

Ben Fryer, BBC Essex

"There's Joe Levenson, Assistant Director at Arthritis UK for UK Advocacy and Health Intelligence. Thanks to Christie as well, 27 years old, opening up about her journey with arthritis."

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You can listen to the full episode on BBC Sounds.