Advice needed - writing to the hospital to push for better care

TLDR: I'm planning to write to my Urology dept (UK, NHS) to try and get better treatment and a proper investigation. Has anyone got any advice on this?

Hi folks. I'm hoping for some advice on how to stand up for myself when I write to my Urologist (UK).

I've had kidney stones (calcium oxalate and phosphate) coming and going, plus ongoing kidney symptoms for the past 5 years now. I keep going through these cycles of CT scans, where I get told the stones are just sitting in my kidney so they're 'not symptomatic' (despite every single symptom I have), and / or that they're too small to be a problem ('they're 4mm, they'll pass on their own quickly, they're too small to cause any blockage'... only months later they're still stuck going nowhere, making the urine back up in my kidney, and I end up with infection after infection and chronic pain).

Most recently I've had a stone stuck down in my lower right pole since about last July, which got lithotripsied but still didn't come out, and has now just reformed right in the same spot. It's still sitting there and keeps causing problems on and off. It flared up a couple of months ago - I had yet another CT scan, and the doc looked it over and said it isn't problematic because it's not in the ureter, so they won't see me until November.

But for the last 2 weeks, I've been laid up in agony living on 60mg cocodamol, nausea & vomiting, blood, leukocytes and protein in my urine, extreme fatigue (think 16 hours of sleep and still exhausted), waking up through the night in agony with my bladder spasming, and just feeling awful and unwell overall.

In the end my GP sent me to A&E because I was clearly in a bad way. They ran bloods, told me they came back fine, and asked me to come back for a CT the following day. That CT showed the very stone I already knew was there and had told them about, but the Urology doc on the ward didn't want to touch it, so instead said they'd write to the main Urology dept to see me in 2 weeks rather than November. I did get an appointment through for July (6 weeks out), but I honestly can't wait that long to be seen - I'm missing work and I don't get sick pay, so I'm worried about losing my house, I can't even wash or feed myself properly right now because of the symptoms, and my mental health is just plummeting from being in pain, sick and wiped out all the time.

On top of all that I have Ehlers Danlos Syndrome, which can cause problems with the internal organs, floppy organ tissue that seems likely to make stones harder to pass, extra scarring, autonomic dysfunction, issues with GI and urinary tract motility, and a different response to pain, painkillers and anaesthetics. My suspicion is that this may well be adding some extra complications, but I'm struggling to get the Urologists to actually listen when I bring it up.

Here's what I want to ask the hospital in my letter:

* to be given an appointment sooner than July. * them to reconsider my symptoms under [Jess's Rule](https://www.england.nhs.uk/long-read/jesss-rule-three-strikes-and-we-rethink/). * them to explain that the doctors who tell me I 'can't' / 'won't' have pain or symptoms from the stones I have are either just wrong about that, or there's some other issue they haven't found or are failing to look for. Either way - something needs to change. * a full copy of my scans, blood and urine results and medical notes, so I can actually see what data they're working with when they tell me it's all 'normal', because I \*know\* something isn't right. * some clarity on their experience and strategies for investigating and treating patients with connective tissue disorders, to see if I also need a referral to an EDS specialist who can liaise with them. * and asking that if they're unable or unwilling to act on my requests, they refer me to a team at a different hospital who will help me.

If anyone else has been through something like this, or works in healthcare and can advise on what to include / not include in my letter for the best outcome, I'd be incredibly grateful.

I'll check back in here with an update down the line if anything happens, in case it can help anyone else ❤️