LUPUS UK
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Caught in a postcode lottery

Hey ho...more of a ramble than anything.

Went to new hospital team yesterday. I use the term 'team' very loosely as I felt more like cattle at an auction house than anything. It was all very efficient, very businesslike, and incredibly remote emotionally. New rheumy is very detached and professional, which threw me off as it was all business. I used to have a good natter with the nurses and other staff at the other hospital, and so while I was already nervous and shaky about being asked inappropriate questions, the tick-box style was somehow even worse.

My medication will be handled now by Boots, and this means it doesn't get delivered anymore - I now somehow have to get to a Boots, which is miles away. This means I am totally reliant upon the Dutchman to get my medication for me as I'm housebound again. Just another thing that further chips away at my independence, one chunk at a time. I wasn't particularly thrilled about this, but the response was more or less that the majority didn't like home deliveries because they were at work, so they went with this. Rural people would be screwed, but I guess since this is a Swindon Hospital they assume there are no rural people. Or something. Who knows. At this point I was beginning to get concerned.

Asked about iron infusions and was denied them 'We don't really do that here'. Instead a Mirena coil was suggested (without asking how I actually respond to birth control hormones or device implants - answer; HORRIBLY). I'd had the same response about being tested for Vit D at my GP "because they're expensive" being the response for not doing what my prev surgery would do regularly if they suspected fatigue. Tried to fob me off with tablets as if this was a revolutionary idea and hadn't been tried a lot in the past. Meh. Suggested I see someone in gynocology to figure out what's going on, but didn't make a referral herself.

I brought in some paperwork (the bane of doctors anywhere, I know) for a charity who needed a professional to sign off on my condition so I can apply for a new powerchair, as I lost mine last week due to losing Motability. Her response as I started to take it out of my purse was 'it's a matter for your GP'. I froze in place, and then eventually gave up on the whole appointment. When she then said 'Let me have a look at it, I figured you were talking about DLA/PIP paperwork', I managed to keep my face neutral. If a specialist things filling out disability paperwork is the job of a GP I didn't feel there was a whole lot to say. She looked through the half-a-page I needed her to fill out and in the time it took her to look at it and tell me to see the GP instead, she could have filled it out herself. The application is on a time limit. If I don't fill it out and send it soon, I won't be able to apply at all.

At this point, it was just like ticking off a list. She asked vague questions, I gave vague answers, and once the whole thing was done, I just wanted to get out of there. And this, lads and lasses, is why I refuse to apply for PIP: without a supportive specialist, it's impossible.

Anyway...I now need to go to a GP who knows even less about my condition than this rheumy, and ask them to fill in all my forms. Considering the Dutchman had to make phonecalls to his GP, insurance company, and hospital to set up his own sleep study, I'm not feeling terribly hopeful. I've only got one dose of Benepali left, and no guarantee any more will be around in a week, which means my doses may be interrupted. I've got forms I can't get filled out and a Blue Badge due to expire in a week, and no powerchair so I'm back to being housebound again. I think I've landed in the centre of a postcode lottery. My last location in Wilts was a bit more well-heeled, I think, as far as residents went, and as a result things were done incredibly quickly but there was no sense of being treated as just a number. Even getting the flu jabs done last week was weird - Saturday jabs with people literally standing in a queue, rapidfire questions asked, shuffled into a room (again, standing), and then out the back, over a step, down a ramp. Again, all had to be done walking. It was like going to a sheep dip.

Ho hum and meh. I'm just feeling generally despondent and even though Dutchman thinks I should try to get back to my other hospital, the computer systems between counties don't communicate to each other. The other hospital couldn't even get blood tests from this GP practice without being reminded to fax it over. As long as they don't stop my medication, I guess, yay. But I don't see the point of ever seeing them again, really. If I'm just going to get some vague questions asked, call me.

Anyway, meh. I hope I can get the chair sorted out in time. I spend most of my time sitting around in bed, and it's going to make a depressing winter period even worse.

4 Replies
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Silvergilt,

This sounds dreadful and it doesn't like things will improve.

I think you are going to have to take the bull by the horns and get some help. Is there a community matron associated with your GP practice, they should be able to come out and visit you and help with your case.

Once they see you in your environment they can see how you manage in your home. They should be able to kick start things for you so you get some answers. She should also help you with your paperwork as she can assess you.

Good luck, try and keep positive, even though it seems like your world has fallen apart. At least this forum is good at keeping our spirits up.

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I’ve tried this in the past and did manage to get some support but I lived in a council house. Now I live in a private rental and I’m not sure we would have much luck. It’s a bummer but so it goes.

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Hello SilverGilt

I presume the Swindon hospital to which you refer is the GWH? It is rather an impersonal place where patients are herded into faceless waiting areas to await redirection usually down some corridor or other. Sadly it doesn't seem to lend itself to being treated in a friendly manner - I blame the designers. Anyway, who did you manage to see there? I know other people have found some of the rheumatologists there not particularly helpful but I see Dr Price who really does go the extra mile although I am well aware that she has a long waiting list as people come from all over the country to see her.

I was a bit surprised by the fact that you can only get your medication from Boots - I get my DMARDS script sent to me from the GWH but can then get it filled anywhere - the pharmacy attached to my GP practice will actually deliver if necessary too. The only time I have had to use the Boots at GWH is if you get a prescription on the day from the consultant and that has to be filled on site at the Boots there.

I've got my flu jab appointment this coming Saturday - it must be the way they do things round here I suppose (I live on the edge of Swindon).

Hope you are settling in to your new home - Swindon really isn't as bad as it's often made out to be if you are now living in the town itself :)

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Yep, that’s the place. Meh. Now I’ve just received a letter for another appointment to ‘take my details so you can continue taking benepali’. But....I was just there? Couldn’t they have done that then?! If my medication is interrupted for a month because someone needs to take my address I’m going to be furious. So I’ll call this week and figure out what is going on. But oh man, I am soooo not impressed.

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