Daydream thread... without the rose-tinted specs

ukmaggie45

Davesnave wrote: »

The barn has power and could soon have a loo, but it's a bit grubby. Hire a yurt perhaps?

Yurts are expensive! Though I suppose you could always install a woodburner in it which would help...

I suggest you buy a bell tent! We stayed in one at the Port Eliot Festival last year (gees, that seems a lifetime ago now so much has happened since then!!!) and it was really quite comfortable, though admittedly it did come supplied with inflated air beds - we took our own bedding though to save a bit of cash. :money:


Glamping in a Bell Tent! by ukmaggie45, on Flickr

Wouldn't much fancy it in winter though - at least yurts are a bit more wind proof... Though looking at the bell tent site above it seems you can get stoves to use in a bell tent... :eek:

Better_Days

ukmaggie45 wrote: »

I wouldn't bother - all they'll offer is graded exercise or CBT. I've managed to steer clear of our CFS clinic under Dr Alastair Miller. It seems to be mainly run by physiotherapists.

BTW did you see the NHS supported online question time a couple of months ago? Dr Shepherd from MEA was about the only sensible "expert" and as for the physio involved, she was just awful. It was mostly the usual psych dross apart from Dr Shepherd. Plus they just deleted any questions that were perceived as not toeing the party line! :mad: And just didn't bother answering anything critical of the PACE trial.

Yes Dr Shepherd is very good and he has done some excellent work complaining to the ASA regarding websites that make claims to 'cure' ME and CFS. Thanks for the link, I'll have a look as I missed the online clinic at the time. Tom Kindleton has done some excellent analysis of the data from the PACE Trial and has had some letters published in the BMJ challenging the interpretation of White et al and pointing out that the 'recovery' criteria was changed after the trial ended and requires a lower level of functioning than the entry criteria. This from the NHS Managers network is interesting - although not policy http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs/

It is incredibly frustrating dealing with the NHS. However, we have agreed a Needs Assessment and a Service Specification with Commissioners both of which take a biomedical rather than a psychosocial approach. CBT is only permitted as an onward referral via IAPT if requested to help the pwme cope with their illness (not to address abnormal illness beliefs) and GET is specifically excluded. The problem we have is that the clinic is managed by a chap whose area of expertise is podiatry and doesn't have a clue about ME. As a result, there is no meaningful clinical oversight and despite what we have agreed with Commissioners some of the staff that deliver the service are doing as they bloody well please and taking a psychological approach. Having said that the OT's are excellent as they were trained by the consultant who has since retired.

The new biomedical service is currently going through the procurement process and I suspect the current provider will be tendering. So it is important to remind the CCG's that the current provider isn't delivering what was promised.

Better_Days

alfie_1 wrote: »

apparently they turn the water off in the house but have a special "thing" they put in the mains in the road and it tells how much/if theres a water leak.
IF it shows positive they will check the hole ...
they then send a report to agent and they have UP TO 28 days [depends on severity of leak] to put right. preferably with a fully qualified workman !!
sooooo when agent finds out I HAVE DONE WHAT I SAID I WOULD DO if they didnt fix it.............. watch this space...........

Oh no, not another 28 days :eek::eek::eek:

Let's hope the 'thing' identifies the leak and you can get it dealt with urgently after waiting during weeks of faffing around.:mad::mad::mad:

Rummer

Oh Alfie, how infuriating to be constantly kept waiting!

alfie_1

Rummer wrote: »

Oh Alfie, how infuriating to be constantly kept waiting!

well now i have a day for water board i am actually sadistically wishing i was a fly on agents wall....:rotfl:

almost worth it :rotfl:

choille

Hope all the NHS stuff is better than expected. It seems so scary now getting the correct treatment/diagnosis too. I just got a physio appointment - I had to get Mr Choille to insist - ridiculous situation & I've fallen foul of the head of the practice.

Alfie hope your Dad is getting a bit brighter - it's not easy at all & sometimes it is difficult to keep bright yourself under tough circumstances.

I just pottered today as I didn't really get much sleep. If I don't get slept I get scary......
Packing stuff up today that's sold - just bits & bobs & wondering how I'm going to clean holidoid houses tomorrow. No ones going in so I could scimp for now!

Rummer you could come & clean as you sound as if you're supping rocket fuel!

Mr Choille does go to a private physio who he finds helped - hasn't been for ages as she's gone to Germany for a hip replacement! Makes you wonder what will happen in a few years down the line - they'll probably just shoot me!

ukmaggie45

Choille, sorry if I sounded critical of physios in general! They do a great job at what they are trained to do. It's the ones involved with (so-called) research on ME/CFS that do me head in. :eek: And *some* of the ones involved in ME/CFS clinics, though I have also heard great reports of some of them too. Sorry too that you had so much difficulty getting a physio appt - the NHS is falling apart thanks to Hunt (replace H! ).

choille

No, I think it varies throughout each individual & some are obviously better than others & each one can only really be capable of having knowledge of several conditions & not all.

At a thing I was attending at the hospital each week we were asked to do various exercises, but some folks just couldn't & actually were far from beneficial because of op scars, the actual conditions, the disease activity etc. And you did wonder if really people who were not aware of our particular condition should be let loose on us!

Years ago I had a post viral thing that was like flu that kept coming & going for a while & I got nowhere with GP at that time & ended up going to a holistic Dr - who was fully GP trained. Within following her advice I felt massively better within 48 hours. I'd been bombarded with anti-biotics & had a really bad gut infection that had been undiagnosed. This was a long time ago before I'd even heard owt about these things.

Agree about the Hunt man.

Thing is I'm amazed that doctors have taken the shilling - large amounts of dosh & then almost ripped up the hippocratic oath - or so it can seem at times.

ukmaggie45

choille wrote: »

Thing is I'm amazed that doctors have taken the shilling - large amounts of dosh & then almost ripped up the hippocratic oath - or so it can seem at times.

Have you and all of us daydreamers seen about the gov's latest way to make a few bob for their friends out of the NHS? Please have a read of this!

Was going to print off the letter this evening, but out of paper! :rotfl: Will dispatch OH to get more after the weekend.

We have a community clear up at the lottie tomorrow (ooops, today now!), along with community bonfire :j where we hope to burn a load of the couch and bindweed roots that we've been saving in one of the old baths we inherited behind the shed! Fingers crossed the rain stays off and we don't get one of the "thundery showers" threatened by the local weather forecast! :rotfl:

COOLTRIKERCHICK

Morning all:j

Sorry to hear about all the problems with the nhs, dr's etc.. it just shows how the systems is just crumbling away before our eyes,

Well yestyrday went ok.. and I mean just ok.. a lot of the people coming in where disappointed with the selection of stuff there, unless you liked card and jewellery making there was nothing much there... you normally see at least a few people selling wool..

BUT on a good note, remember the scumbags who broke into our place back in June... WELL, to lesson their sentence their solicitor recommended they tell the police where the rest of our stuff was, so we have had most of it back:j:j:j:j:j

the police wants us to drop our compensation claim, BUT we will just adjust it accordingly.. we know one of the cars they own is still impounded, so hubby is going to see what if they can sell or hand that over to us, don't think so, but its worth a go..

Right better get ready for today, fingers crossed the sales will be a bit better than yesterday...