Val's story: 'I couldn't wait in pain'

When Val Taylor, 71, from Pembrokeshire, suffered with swollen joints in July 2024, she suspected rheumatoid arthritis as her mum had suffered the same condition. After blood tests, her GP agreed but she couldn’t receive medication or support without a formal diagnosis from a rheumatology consultant which meant waiting over 12 months.

In pain and unable to walk without crutches, Val saw a private rheumatologist, received a diagnosis and began treatment. Her NHS rheumatology appointment finally came through in March this year, 20 months after she was placed on the waiting list.

‘It has been an incredibly difficult process to receive a diagnosis and treatment, even following a private route. There are many hurdles and dead ends to overcome at a time when you are feeling unwell and very vulnerable.’ 

My mum had rheumatoid arthritis so when my hands started swelling in July 2024, I did wonder if that’s what I had. The GP sent me to A&E where, after an eight hour wait, they did blood tests, gave me five-days’ supply of gout medication and sent me home.

Within two weeks, every joint was inflamed and painful, it was very frightening how quickly it came on. I’d been fit and healthy as I approached 70, walking my dog four or five miles every day, so this really knocked me off my feet, it was devastating.

The cost of delays and bureaucracy

I’d been feeling a little tired before this happened so booked a private health assessment and, fortunately, the appointment came through around the same time and a full blood count revealed a very high reactive factor indicating inflammation. The private doctor did say it sounded like it could be rheumatoid arthritis and did further tests which showed the rheumatoid factor was high so, armed with that evidence, I went back to my GP.

Although my doctor agreed it sounded like rheumatoid arthritis, he explained that there was nothing he could do until I’d been diagnosed by a rheumatologist which would take between 12 and 15 months on the waiting list. The sad thing was my GP was experienced in RA, knew what I needed, but couldn’t help me other than give me co-codamol which didn’t help.

It was a real shock and I knew I couldn’t wait over a year in extreme pain and unable to walk without crutches. Fortunately, I had savings so I found a private rheumatologist but even that was a nine week wait and, by that point, I could barely get out of bed, felt very poorly and was crying every day. It was quite a dark time for someone who is usually very positive and proactive.

That’s when I found Arthritis UK online which was brilliant, the best thing being the exercises which I started doing in the mornings and they were a tremendous help, the only help I had at that stage. I found the online information really helpful and have since subscribed to the magazine.

Turning to private care for help

The private rheumatologist diagnosed rheumatoid arthritis within minutes then aspirated and injected both knees and prescribed methotrexate. I did have to pay for the treatment but I would have done anything at that stage. Then I was able to go back to my GP who was very supportive. Methotrexate didn’t work, even after he increased the dose, so they added hydroxychloroquine which worked well enough to get me back on my feet again but, by July 2025 my knees were both totally destroyed.

I knew it would be another long wait for a referral so I went back to the private rheumatologist who referred me to a private orthopaedic surgeon who was clear I needed an operation. I had the left replaced in October 2025 and the right in February this year, luckily I was able to spread the repayments to cover the £30,000 cost. My savings are gone but, at 71, I didn’t know how many years I had left and don’t want to be in pain and unable to walk while I’m on an NHS waiting list for years. This March my NHS rheumatology appointment finally came through, 20 months later, and I’m now under the care of a nurse led team so I have support. 

I think the biggest surprise for me has been the blocks put in place by beaurocracy. We knew within weeks of me first visiting the GP what we were dealing with but I couldn’t get the support I needed without a very long wait for a rheumatologist which was really frustrating.

You are also limited in terms of support you can get on the private route, if methotrexate doesn’t work you can’t get biologics privately so you’re back to waiting for an NHS rheumatologist and that really worried me, the blocks they put in your way causes so much anxiety. I think the NHS could work more closely with the private sector which, I believe, does happen in England.

I am fully sympathetic for the NHS but we do need to find other solutions because situations like this have a very real impact on people’s lives. It’s been a real journey for me and I think you have to be mentally tough to keep pushing, keep going. I’m sure there are people out there who must feel like giving up but I want to encourage them that there will be a way through.