Poppy Hocken, 64, has lived with Axial Spondyloarthritis since she was a teenager. Here, the former nurse and clinical researcher explains how Inhealthcare’s platform helps her manage the painful condition.
What was your experience living with AxSpA before this platform?
I’m very blessed to be a patient at Bath because this is a gold standard department, but you can still feel quite alone with your condition. I’m very conscious of putting pressure on the NHS, especially since COVID.
I could have phoned, but the difference is having a platform where I’ve got instant access to my team without feeling like I’m putting pressure on them. We’re all aware of the NHS backlog in rheumatology, so I felt quite alone.
When the Inhealthcare platform was introduced, I suddenly realised the benefits of having somewhere to record everything going on with my condition. It’s a rollercoaster, and knowing that somebody was picking that up and would contact me was invaluable.
What’s changed since you started using the platform?
You have to learn to self-manage with a lifelong condition because I can’t be living at the hospital. I’m quite proactive as a patient – I’ve had this condition since I was a teenager, though I was 34 before I got my diagnosis.
One thing I always struggled with was remembering what was happening with my condition. I’d have a week where I’m in a lot of pain, try to record it, but life is busy and I forget. Then I’d go for an appointment and couldn’t remember how long the flare lasted.
Now, the minute I start having problems, I can record everything on the platform, then let go of it because it’s stored and sent straight through to my team. My consultant and I can access it to see when everything happened.
It’s very quick and easy, which is key because people won’t use services that take too long. It’s empowering to self-manage daily and monitor my condition. I can see how I’ve done after my biologic infusion – how the pain scores drop and when they start rising again. The biggest change is that ability to monitor my condition.
How do you use the platform day-to-day?
I don’t use it every day. If I’m not using it, that means I’m doing okay. I use it when I’m struggling or prior to an appointment, which is brilliant because it means my consultant can see all my recent data before we meet. We don’t have to spend time going through everything because it’s all online and the consultant can instantly see how I’ve been doing.
I only use it when I’m struggling because that’s when I want to record what’s happening. Otherwise, I get on with my life. Yes, I live with pain every day. That’s the reality. When you’re flaring, those are the tough times. You get up in a lot of pain and have to fight through that, but I can record those moments.
The flaring varies – probably once a month to once every two months. You never know when it’s going to hit, why, or how long it’ll last.
How has this changed your relationship with your care team?
I was always seen every six months because I’m on biologics. That tailed off through COVID and when backlogs grew across the NHS.
I’m back to regular contact now, though I don’t necessarily need to be seen every six months – I’ve been on biologics for quite a long time. But it’s given me that instant access back. I know the consultant is keeping an eye on my condition and it’ll alert him if there’s a problem.
It’s that confidence of knowing your team is there. I know because I’ve experienced it – when there was a problem, somebody contacted me very quickly.
How do you feel about managing your condition now?
I feel safer and much more confident that I’ve got a safety net. I felt desperately lost after COVID because of the lack of contact. For someone newly diagnosed with a lifelong condition, it would be frightening to feel like you’re at sea.
It’s given me confidence back, knowing I can let my team know what’s happening, which means I can let go of some of the stress of living with the condition.
What does that access mean to you?
It definitely helps with your mental health. I have a level of resilience, but this has improved my mental health. I feel happier, safer, more confident that if I struggle, I have support.
On the platform, there are videos and information – useful snapshots where you can access your doctor, occupational therapist, and physio. They’re brilliant because they’re not long-winded and give people confidence to deal with the condition.
What surprised you most about using the platform?
The instant access that the team have. When I filled out my scoring, which was quite bad, somebody called me to say “We don’t feel your drug dose is right. You need to increase it.” I was really surprised at how quickly they picked it up. To actually see it in action was brilliant.
Also how easy it is to use. Not everybody’s going to be as computer savvy, but you need to make it easy and accessible because that’s what encourages people to use it. If it’s too difficult, they won’t use it.
Can you give an example of when the platform really made a difference?
When you’re flaring, the platform is my access to my team without having to phone up. I don’t want to put pressure on people because I’m acutely aware of NHS pressures.
Having this platform dissipates all that. I don’t worry about it anymore. It’s just knowing I’ve got that tool there. I can’t emphasise enough what this could mean to people.
It took away feeling that I was putting pressure on the NHS. I could do this and know that if they needed to contact me, they would.
What would you want other patients to know?
I would want them to realise this is a huge safety net. I worked in clinical research, so I saw patients when they were first diagnosed. When you first get a diagnosis, it’s quite scary and you’ve been wondering why you have back pain at such a young age.
New patients need to feel they’ve got a way of accessing professionals. I’d want to show them how easy it is to use, the benefits, and that somebody is still keeping an eye on them.
How do you see this affecting your long-term health management?
Now I’ve got it, I wouldn’t like not to have it. It’s one of my key tools for self-management. I’m an expert on my condition and understand autoimmune conditions well professionally, but I wanted a simple tool I can live with.
This will be something I’ll hopefully have for the duration of my time on this planet – a big tool that helps me monitor my condition and understand myself better. I’m always willing to learn more about self-management, and this is a big one. I see myself using it for the rest of my life.
Any final thoughts?
I would love to see this rolled out to more NHS centres and given instantly to patients when they’re newly diagnosed. If you’re doing research, you could find out how newly diagnosed patients cope with it, as opposed to somebody like me who’s lived with my condition for much longer.