A damned slab-sided Dutch-built bastard.

Well, that went about as well as expected.

Apparently, all I need to do is be more disciplined about getting up early in the mornings, so that I’ll be tired by an appropriate time at night! Gee golly, I’d not thought of that in the eighteen years that my sleep pattern has been a problem. I tried to explain that it wasn’t a matter of “No, just another five minutes in bed…” it was “Someone can literally be shaking me, slapping me, trying to wake me up with alarms and lights, and I will fall asleep again, standing up, or vomit” but apparently that’s just a matter of willpower.

My exact words were “That’s like telling a depressed person to just smile more.” and Dr Ly looked very sad at that, then came back to it a while later in the conversation to apologise and clarify that she “wasn’t trying to be flippant” so maybe, just maybe, she’s understanding the problem.

And then there was the Stanmore stuff.

UCLH claim that they sent the referral off on-time in July 2014. Stanmore claim never to have recieved it.

My local GP doesn’t have the full copy of the letter (Which I’ll blame on RL, since they’ve got page 1 and page 3, but not page 2, which was on the back of page 1, suggesting that a receptionist failed to check that they’d scanned it all in) but once they do, since the missing page is the one which says “Refer the patient to Stanmore” they’ll be able to backdate my referral to 2014, and hopefully get me bumped up the order.

Good thing I keep my own records, isn’t it?

For the record, this is the “lost” letter. It’s a pretty fucking important one.

letter1cens letter2cens

Look at that list on the second page. Let’s see whose responsibilities they were, and if they’ve been upheld;

  1. Better pacing. More swimming. My responsibility. Carried out.
  2. Work on core strength. My responsibility. Carried out.
  3. Drink more water, eat more salt. My responsibility. Carried out.
  4. Regular physio every 4-6 months. Local Hospital Trust’s responsibility. Not carried out.
  5. CBT for pain. Local Hospital Trust’s responsibility. Carried out.
  6. Stanmore referral. UCLH’s responsibility. Not carried out.

Effectively – The only person to not lose their wicket here was me.


3 thoughts on “A damned slab-sided Dutch-built bastard.

  1. I had a similar experience with an osteopath scoring me 5/9 and noting additional criteria and writing a letter recommending referral to a specialist back in 2009, when I was 31. Nothing ever came of that letter either.

    At the time I was in chronic pain from commuting long distances on public transport with a laptop in tow, I had misaligned joints everywhere from my feet to my shoulder and neck, particularly in the cervical spine.

    Thankfully getting a car (automatic as I do not trust my wrist with a manual gear shift) and a lot of gentle exercise, particularly 4-8km swimming a week in the last two years, has helped me to get things under control over time.

    I still have bad spells, particularly hormonally induced, where I rely on splints and wrist supports (and Ibuprofen and Diclofenac) and I can’t move without joints popping, and I wake up several times a night because a shoulder is on the verge of popping out, but I count myself very lucky that at least for the time being I am able to function well enough to be mostly pain free, be able to work in a job I enjoy and continue to swim and walk, both activities that give me physical as well as mental comfort.

    I really hope that you finally get the referral sorted – I can’t pretend to understand what you are going through, even at my worst I wasn’t in anywhere near as much pain as you, thankfully. But reading through some of my own last experiences and assessments I am certainly reminded that things can get better.

    • Man, sounds like we do have a similar set of embuggerances. Fingers crossed to staying pain-free though.

      I know, sadly, more than a few people whose Stanmore referrals just “got lost” so I’m starting to think that their inbox, at least with respect to Northern patients, might actually be a furnace. If you ever feel like taking the fight to them, I’m basically banding together people whose referrals went missing, to do one big push of “Right, there’s enough of us, take us all in right now or face the wrath of the ombudsman”

      We do indeed find the comfort where we can, and exercise is good on so many fronts for that. I swear I’ll get to the other sports centre one of these days.

      It’s criminal how bad a state they let us get into before they start treating us properly – Did you get the “But why did you just continue on with all these luxations for so long?” speech too? It’s probably the most galling one, just because the answer is “Because doctors kept forcing me to.”

      Fingers crosed that it’s all upwards from here…

      • My referral was just to a local rheumatologist as far as I can tell, and thankfully I no longer need it. Who would have thought that getting a car would ultimately, six years later, leave me fitter than ever?

        But I’ve heard of similar “black holes” for referrals in other areas of expertise, even ones up North. I would guess these are hopelessly oversubscribed and of course your local health board doesn’t *want* to fork out the money.

        So a certain percentage of such referrals just seem to fall through the cracks, perhaps figuring that if people really needed them, they would try again. Only, if you are dealing with people whose issues among other things entail depression, lack of motivation, anxiety etc, that’s the population least likely to stand up for themselves and keep trying!

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