Synovial Syntax

Posts Tagged ‘The System

Was the time spent waiting for my two appointments today. One hospital, one GP. Add in travelling time, nearly 5 hours. I’m not going to sound off about this, just note it. I was and am too busy trying to figure out a realistic number of hours I can offer to work in a month, with children, their sicknesses, school holidays, house management and healthcare appointments. I’m thinking 90 hours a month maybe, 70 comfortably. Can get a lot done in the right job with that many hours, even if only half of them are really productive. I’ll see.

So after that waiting I got my Pneumovax and seasonal flu jabs done, and note that compared to the Humira, I could barely feel the injections. My nurse specialist didn’t make it to work today, so I had a cheery registrar and med student instead. They were in a state of aching delight over my graph of symptoms and meds, and we spent more time going over my old CV than talking about Humira progress. Funnily enough, it’s been a bigger boost than anything else could have been, to remember myself being effective and engaged outside of the home, and illness.

Also, spent my travelling time rehearsing ideas for interview type situations. It’ll be a bit of a challenge to be brief and clear about where the RA and parental responsibilities have overlapped to keep me out of paid employment, and how I will manage them from now on in.

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…gritted through pain and effort of persistence. Mind you, not as awful as yesterday’s crisis. Not what you’d wish on an enemy either.

So, i rang every 45 minutes til husband got home from his big bank job (no, not that kind!) at lunchtime. he had the kids this afternoon. i went down and had a blood-out-of-stone convo with a sweet but undertrained 20 year old desk clerk that basically went:

‘hi, have you got any cancellations for this afternoon please?’
‘no, sorry, first available appointment is thursday, we had some this morning, you should have called’
‘i did, six times, but that’s in the past, can you help me now?
‘not really i’m afraid’
‘well, i will wait just here all afternoon for a no-show spot, and can i have a word with whoever’s in charge today. I’ll need a letter to take back to A&E tonight explaining i couldnt see a gp’
‘do you need to go to a&e?’
‘i did yesterday, they helped and they said i had to come in today to review my pain meds’
‘what do you take?’
‘quite a few things that aren’t working well’
‘what meds’
‘well, codydamol…’
‘so you need some cocodymol ok then’
‘no, no i don’t need repeat prescriptions they aren’t working, i need a consultation with a medic. i can wait all afternoon.’
‘um, i can get a doctor to write a new prescription’
‘no thank you, i need to see a doctor about some problems that have come up’
‘what problems?’
{madam here turns around and fails to count the long queue of people enjoying her masterful temper management}
‘i can talk about those in private if you need to know, where shall we go?’
‘i can’t leave the desk really’
‘and it’s not fair for me to have to do this, but i’ve vomited blood once today having had opiates at a&e last night, i’m still in a great deal of pain and i’m not sure if my new biological drug is causing any of these problems’
{her eyes register fear at the word biologicals, the queue goes very still and quiet and shuffles back a little}
‘i’ll just have a word with the triage doctor’

….

30 minutes later, i’m given an appointment for 2.5 hours later. i call up my husband and we sit and watch the boys play in the sun for a while. certainly made the best of it.

gp was sweet and showered me with tramadol, 30/500 cocodamol and omeprazole and advised on what likely to happen at consult next month.

Oh lordy. Had a very extreme pain crisis yesterday afternoon and night. Right jaw – for which I have a maxillo-facial consult booked for end of October. Have had this pain on and off since November last year. Thought it was toothache, 4 visits to the dentist later, root canal work and a night-time bridge thingy later, she says – it’s not your teeth.

Yesterday, the pain was worse than labour, relieved only by squeezing up co-codamol pain relief into every 4 hours and taking 2 glasses of wine. Bum in air, forehead on floor also helped as my jaw was kind of hanging there not hurting anywhere near as much. Thought I’d got away with it, went to bed very dozy, woke in great pain again after 30 minutes went straight to A&E. Exemplary history taking, quick access to nurse and then doctor. Who did the best exam of the area I’ve yet had, says it’s the RA. Gave me Tramadol and a different presentation of codeine for today. Strict instructions to see GP today.

Rang GP twice at 0830 when lines open, coudn’t get through. Took older boy into extra session of pre-school (thank you to them, a thousand times for having him). Baby zonked out with start of cold now. Called GP again at 0930. No appointments free. No advice on how to access any medical care. I want to understand differences between pain killers, and have a stash of Tramadol against repeat emergencies. Also, seriously considering getting private MRI of jaw, by practice in Harley Street who have a maxillo-facial specialist on their list. About £300. But! I need a GP referral for this.

Back to square one then. Have my phone timer on and am calling practice for cancellations every 45 minutes. Can they call me if they get one? No! I am in pain, I find it very hard to care for the kids, my husband doesn’t earn if he doesn’t work. I don’t like this, no sirreee.

On our NRAS forum people often post of shocking neglect and woeful undertreatment by some parts of the NHS. A call to arms here.

What a grand old weekend. Family, weather, time out. Merchants of Filth have been served eviction notice by the incensed and sensible (now we’ve finally found her) freeholder. It is such a relief there is some peace on the horizon. It has not been helpful for a person with fatigue to have so much interrupted sleep.

I’ve been surfing for a couple of hours to entertain myself after a suprisingly active day. I’m cheating on my blog today by simply linking to this look at Kafka’s NHS. Much has amused me today, but the fact that these diagrams are ‘real’ is probably the lemon-acid icing on my cake.

C day is consultation day. Tomorrow’s is also ‘cap in hand’ day. At the last consult he mentioned anti-TNFs as next stage, as I’ve not been responding well to methotrexate and sulphasalzine. I’m particularly hoping to be shot of the sulfa, which is no good for my mood. I’m going to ask if we can skip the anti-TNF and go straight to Rituximab, as it’s clearly shaping up to be more effective, and cheaper than anti-TNFs. Don’t expect a yes, as it’s not approved in my care stage yet by NICE. But if I don’t ask, I don’t get.

Have been having a lot of pain and immobility in many joints, but am not going to ask for a steroid jab. I’d rather save that for the onset of winter, when I expect things to be really sore, if last winter is anything to go by. Must look into that, the effect of weather.

This way, that way?

This way, that way?

The System is the tongue in cheek term I’ve chosen for the healthcare arrangments in England, under the National Health Service. Tongue in cheek because for all the individual instances of awfulness and excellence you find with clinicians, it’s the way the whole thing (doesn’t always) hang together that is fertile ground for writing. This post is just an introduction to it all so far. I’m sure there will be a lot to report in future. It excludes all other systems, such as the ones for Social Security.

As usual in the UK, I went to the GP with my initial symptoms of RA. He was unusually clued up, and our PCT (Primary Care Trust, which specifies procedures for testing and referral amongst other cost and quality management exercises) funds anti-CCP testing so I was tested for that. Got an off the scale positive and +ve RA factor, and a referral to our local secondary care trust, UCHL. I deteriorated rapdily during the nine week wait for the appointment. I did call and beg for cancellations for an earlier appointment but The System couldn’t handle that. I finally got to my consultation date, for which in preparation I weaned our second child onto formula bottles. I knew I’d be going straight onto some heavy duty meds. Note to others: don’t google your symptoms overmuch. If you have an off-the-scale anti-CCP and RA factor +ve combination, you will be told by two dozen websites that this is a strong indicator of poor prognosis. You only need to hear it once. More than once is masochism*.

After this initial consult, I’m seeing the main man every couple of months. When visits to him are less freuguent  they are to be interspersed with the rheumatoid nurse specialist. I can’t really comment on that role yet, as I’ve not seen her much, as I’m seeing too much of the consultant. What she has done is simply shadow him on discussion of drugs in, side effects out. One thing I do like is her availibility to answer questions on the phone. I’ve only used this once re: some bad side effects. Othertimes, NRAS does me fine.

Anyway, those nine weeks were hell, hard work, unmedicated essentially, major pain. And were only half the target time for rheumatologist waiting list. For all it’s faults, I’m deeply glad to be in The System so far. I am unimpressed by the way blood test instructions and results have been going astray between GP and UCLH, but otherwise the communication isn’t so bad. For it is all done on different computing systems.

I have no idea who I ask for: podiatry, referalls to gut and jaw specialists, physiotherapy. Sure I’ll find out sometime.

*This has just reminded me of the first ever grown up joke I ‘got’. A sadist and a masochist meet walking down the street. The masochist says ‘beat me, beat me’ and the sadist says ‘no’.


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