Patient experience in the uveitis service

My name is Hermy Skew. I'm a clinical nurse specialist in uveitis at the University Hospitals NHS Foundation Trust in Birmingham.

I support the uveitis clinics in the ophthalmology outpatient clinic at Queen Elizabeth Hospital.

I work alongside the specialist nursing team to support patients who are prescribed immunomodulatory treatment to manage their uveitis.

Uveitis is inflammation in the eye and can affect different parts of the eye. It can be caused by injury or infection.

It can also be due to autoimmune causes, wherein the body mistakenly attacks its own healthy tissue, such as the eyes in uveitis.

We prescribe different treatments to control uveitis, which could be in the form of eye drops, tablets, or injections in and around the eye.

The type of treatment depends on the cause, severity, frequency, and location of inflammation in the eye.

As a specialist nurse, my main role is to act as a patient advocate when patients attend clinics, to perform screening tests to help with diagnosis, to counsel patients before they start treatment, and monitor patients while they are on treatment.

The type of treatment depends on the cause, severity, frequency, and location of inflammation in the eye. As a specialist nurse, my main role is to act as a patient advocate when patients attend clinics, to perform screening tests to help with diagnosis, to counsel patients before they start treatment, and monitor patients while they are on treatment.

The specialist nursing team are the main point of contact for any concerns that the patient may have relating to their diagnosis and treatment.

We work as a conduit between the patient and the consultant team and support the patients and their families or carers as they navigate their clinical journey.

My name's Beth. I'm a patient at the Queen Elizabeth Hospital in the uveitis clinic.

I have a condition called punctate inner choroidopathy, which is where inflammation at the back of the retina can cause scarring, and then complications can arise from that, which causes new blood vessel growth, or bleeds, which we call them as well, which can cause distortions.

And it needs to be treated promptly to save vision or bleeds, which we call them as well, which can cause distortions. And it needs to be treated promptly to save vision or preserve what you have left.

And that could be treated with steroids or immunosuppressants, or in some cases, eye injections as well.

So I first started getting symptoms of PIC in October 2019, and when I was seen by my local hospital around November, December 2019, they diagnosed it as PIC, but they treated me with oral steroids, which worked initially, but then as I was tapered off them, I flared up again.

So I went back to the hospital and asked if there was anything more drastic we could do to try and get me off steroids but prevent further flare-ups.

Unfortunately, they couldn't offer any other treatment aside from oral steroids.

Through an online support group, I'd heard about the Queen Elizabeth Hospital and how amazing they are and how many other treatments they could offer.

So I asked my local hospital for a referral, and I was seen really promptly. This was around June 2020 that I first came to the Queen Elizabeth.

Immediately, they did scans, which actually picked up a bleed that my local hospital didn't have the technology to see.

So I was treated that day with an eye injection.

I was put on immunosuppressants, and I was also given a steroid implant to the eye, and then we continued with the tapering off of the oral steroids.

It's a really positive experience coming to the Queen Elizabeth Hospital.

Sometimes I'm seen in the main ophthalmology clinic, and sometimes I'm seen in the rare diseases center. Both are really positive experiences.

The staff are so knowledgeable. They always know who you are and remember you. They're really quick to answer any queries you have.

They will sit and go through the scans Dr. Bala will literally go through each layer of my retina with me and explain what she's seeing and how that compares to previous scans.

And Hermy's great as well. She will tell you things that you might not understand in more of a layman's terms, just to make sure that you really have a comprehensive idea of what's going on with your eyes.

And sometimes I've been to the clinic when it isn't a scheduled appointment.

I've just noticed a change. So it's really useful because I can get in touch with Hermy just by texting her and explain that I've seen something that's concerning me.

Can they squeeze me in? The answer is always, "Yes, we would rather check and be sure that nothing's going on than leave you to worry about it until your routine appointment."

And you don't feel guilty for coming in out of the schedule. They make it a really positive experience.

I would definitely say write down any questions you have, because sometimes it can feel a little bit information overload, purely because you've got so much going on in your head that you don't always take everything in on the first go.

So write down your questions. If you might struggle to write the responses or understand it all, you can always ask Hermee or Dr. Bala to follow up with an email just explaining things to you.

And bring somebody with you as well to support you, because it can be really emotionally taxing having an eye condition and not knowing what the future might be.

If you can, try and join the online support groups as well, but Hermy and Dr. Bala can always put you in touch with other patients to guide you through the different treatments that you might have and put you at ease ther.

But the staff are so lovely and so knowledgeable, so do try and be open and honest and just describe how you're feeling, your symptoms, what impact that's having on your day to day.

And then I suppose in your external life, keep your feeling, your symptoms, what impact that's having on your day to day.

And then I suppose in your external life, keep your workplace or your place of study up to date as well so they can make accommodations, even if it's just making sure you can have the day off for an appointment, or you don't have to go back to sitting at your computer if you've just had an eye injection.

So just keep everybody in the loop and just try and have those really open conversations.

I was really, really glad to have been referred here. I think it's made such a big difference to my sight.

I feel completely confident in the team's abilities to preserve what sight I've got left and to make sure that I'm up to date on things like my bloods, which I'm terrible for remembering to get done.

Even repeat prescriptions, just explaining things to me, keeping me aware of what's happening and what I might expect to happen in the future.

Even things like the latest research in the area, feeling, your symptoms, what impact that's having on your day to day.

And then I suppose in your external life, keep your workplace or your place of study up to date as well so they can make accommodations, even if it's just making sure you can have the day off for an appointment, or you don't have to go back to sitting at your computer if you've just had an eye injection.

So just keep everybody in the loop and just try and have those really open conversations. I was really, really glad to have been referred here.

I think it's made such a big difference to my sight. I feel completely confident in the team's abilities to preserve what sight I've got left and to make sure that I'm up to date on things like my bloods, which I'm terrible for remembering to get done.

Even repeat prescriptions, just explaining things to me, keeping me aware of what's happening and what I might expect to happen in the future.

Even things like the latest research in the area, the team will share with you and how that might impact you or how it might impact you in the future.

I think it's a really, really good team, and I do feel like they really care and look after your sight. So it was the best decision getting referred here.