Update on worst week ever...: My dearest friends... - LUPUS UK

LUPUS UK

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Update on worst week ever...

Charliebear68 profile image
28 Replies

My dearest friends,

If I haven't replied directly to your lovely messages then please accept my heartfelt apologies. I've been drugged up to the eyeballs and in a big flare up and to top it off, the GP surgery buggering about as usual. It has been over a week now since my GP requested an urgent referral for an MRI scan and I'm still waiting. As I'm sure some of you know that I rang the surgery Monday morning to see if they'd heard anything but the admin assistant insisted it had been sent and that the hospital would phone but as we are all now getting wise to leaving anything or anyone to their own devices, I asked if I could phone the hospital and she said yes but you'll have to find the number and I'd leave it until the end of the week. I didn't leave it and I got the number myself and rang. They hadn't received the request yet. The lady I spoke to at the hospital was very helpful and told me to call the surgery back straightaway to see how it was sent. It was just after 12:30 and the surgery phone line closes for lunch until 2pm! Lucky for some! I did manage to get through to the same admin asst i'd already spoken to and she assured me it had been sent. When I asked how, she didn't know and just kept saying it has been sent . I'm sure me asking was it sent by email, fax or bloody carrier pigeon didn't really help but I just gave up and said I wanted to make a complaint. She wouldn't give me the practice managers name so I said is it still Julie and she stammered a yes...my parting comment was that I think they need to review their policy on the meaning of urgent. So...still waiting for a phone call.

Meanwhile, in the land of where medical staff understand the meaning of urgent and making you feel like pain relief can be achieved without killing you...the wonderful Dr T at LLC squeezed me in this morning, sent me for an MRI, prescribed some diazepam and thinks I have a prolapsed disc. He's on holibobs next week so I'm back to see Dr K for the results. One morning. I know I had to travel to London but it's sooo worth it. B and I are off to pick up Boo from Godzillas. Then bath, soya latte with shot of sugar free caramel, cheesy movie in bed.

Thank you all - you are all amazing xxxx

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Charliebear68 profile image
Charliebear68
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28 Replies
SjogiBear profile image
SjogiBear

Hope you enjoy your latte and movie CharlieBear . . . certainly very well deserved. What an unbelievable saga of lies and untruths from your surgery! I had to smile when you wrote how you'd asked whether the scan request had been sent by carrier pigeon - possibly more reliable that the staff in the surgery I would say. Thank goodness you seem to have encountered a decent human being in the form of Dr T and I hope that you can hold up now until you get your results next week xxx

Charliebear68 profile image
Charliebear68 in reply to SjogiBear

Thanks Sjogibear,

Had peppermint tea instead! I'd eaten quite a lot yesterday and the peaches got me!! Yes, all the Drs , nurses, receptionists and especially the secretaries at LLC are outstanding. I really don't know what I'd have done.

I've spoken to the practice manager before and she was just as bad. I had to complain about a member of staff who was moaning about me to other members of staff. She had forgotten to mute the phone call so when she came back I asked her where and when she'd done her medical degree. I was called by practice manager who basically told me the member of staff was going through a tough time, they'd investigated it and wouldn't be taking it further. Tell me again, why the he'll am I at this practice!!!??.

I think the Naproxen/cocodamol/ibuprofen gel/diazepam combo is working as it's taking the edge off. Dr T gave more diazepam (2mg x 3 times a day) so I slept better. I've got a banging headache though - no idea how when on so many pain killers!! I can muddle through till next Friday.

Thank you sweet pea - I couldn't do it without everyone's support.

😘😘😘

whisperit profile image
whisperit

Keep on keeping on, Charliebear. Let's hope things really move forward with this scan etc x

Charliebear68 profile image
Charliebear68 in reply to whisperit

Forward is the only way! At least with actually having the scan it is definitely forward.

Hope you're ok

C xx

PMRpro profile image
PMRpro

The word they need is EMERGENCY. Urgent in the hospital scenario just means sooner than routine - so maybe 8 weeks instead of 12. It's been that way for at least 10 years.

If I have to call the hospital my GP TELLS me the number from her special little book...

in reply to PMRpro

The last para of this post made me smile - especially your intended plans for tonight with B and Boo! But also the carrier pigeon and the whole sorry carry on - so depressingly familiar. I'm really glad you got into LLC today to see Dr T and hope there's more can be done for a prolapsed disc - if that's what you turn out to have.

Shame on your GP Practice😡X

Charliebear68 profile image
Charliebear68 in reply to

Hey Twitchy,

B is hubby, Boo is daughter and Godzilla is my mom 😁

Im a bit groggy today, not slept for so long in ages. Probably why the headache...

B has a copy of my mri but i don't want to look. He said he'll see if anything stands out but won't say if it does. If it is a prolapse disc it an go back on its own with pain relief then physio. Or steroid injections into area (eugh!!) And last resort surgery but that's a real last resort.

So just see what Dr K says on Friday and go Forward!!

Mmm GP practice is on my to do list...

Hope you're ok chick.

😘😘😘

Charliebear68 profile image
Charliebear68 in reply to PMRpro

Hi PMRpro,

My biggest problem is I never see the same GP twice. It seems that there are more locums than not. The last GP was actually one I'd seen about 4 years ago who had just returned from maternity leave and is part time. In fairness to her, at least she ordered the scan but any request then goes into the main office...It scares me to think when you're relying on your Dr for any health problem , unless they can get you in and out with a prescription within the 10 minutes, you're bolloxed.

The only special little book my GP would have is for 'awkward patients....

PMRpro profile image
PMRpro in reply to Charliebear68

It was the one who was always on maty leave and only worked part-time anyway who could "do" PMR. The others I saw were useless - and if I had my time again I'd have worked my way around more of them. I'm sure someone could have worked out why I was there so much!

I do like the system here - if you need the doctor you turn up on the day and wait. And when you get in she takes all the time she needs - up to 3/4 hour if it is needed. But then you don't have to keep going back. She works alone, except when she is on holiday you know you will see her - and her partner practice is just as nice. No receptionists with self-awarded medical degrees to fight your way past. 99.9% excellent...

Charliebear68 profile image
Charliebear68 in reply to PMRpro

I saddened by the way things are going. I know I need to change practices because I've moved out of the area and now I have a diagnosis I feel better prepared. I'm not vindictive but I feel like I've been treated appallingly and I need to do something! The nhs is broken but when it works it's amazing. The A&E dept at Russells Hall hospital in Dudley were outstanding with MIL. The difference from one hospital to another...

We have friends who are Italian but live over here and are perplexed by our system...Gatekeepers have a lot to answer for....

Thanks Pro 😘

PMRpro profile image
PMRpro in reply to Charliebear68

I'm perplexed by the NHS at present - never mind being Italian! My entire family used to/still do work in the NHS, me included. OH retired early when it got to the point where he was stopped doing the research and stuff that made the paper trail worth it. He joined to be a medical physicist doing clinical work, not administration and juggling his clinical budget to pay the PFI vultures to replace a light bulb - when he had electricians working in the department...

Charliebear68 profile image
Charliebear68 in reply to PMRpro

And they wonder why it's in the state it's in...it must be incredibly frustrating having seen it from both sides. Nobody seems to have the answers but it always seems like everything comes down to money or should I say, lack of it.

PMRpro profile image
PMRpro in reply to Charliebear68

They brought in managers who thought/think you can run a health care system like a factory. Specify times to do a procedure and then you timetable everything down to the last minute - but the first patient of the morning can't manage to just swallow her endoscopy tube - so instead of it taking half an hour, she is in there for over an hour to get the test done. Then the second patient of the morning is late - and something doesn't go to plan and he takes 3/4 hour instead of the planned 1/2 hour. And so it goes on.

Or someone phones in sick - you really don't want someone with D&V supervising your test. In the old days there were plenty of staff, between them the other 4 could cover for that one missing person. But now there are only 3 altogether anyway - 2 people can't be in 3 places at once.

A patient in A&E is found to have something REALLY nasty - but because they don't have the spare capacity you have with 85% bed occupancy, there is no bed for them. And that blocks the cubicle the next 3 or 4 patients should be using. And a nurse is watching her and unable to see to others.

And I won't start on PFI - except to say it is costing the NHS Trust millions and millions it shouldn't. If OH needed a new electric socket it cost him over £450 and a wait of weeks - where previously he'd have called Estates and someone would have been up before lunch.

I have no doubt someone is making a killing - while killing off patients by neglect...

Charliebear68 profile image
Charliebear68 in reply to PMRpro

It's appalling. When I was in A&E last week the x-ray was 'out of order'. On my second visit, the technician told us that it wasnt broken just some 'suit' had decided to pinch pennies and not renew the license! They could take xrays but couldn't send the images to patient files...this was on a busy Saturday night and the main x-ray was on the other side of the hospital! Someone needs to time and motion study that. It's not rocket science we need common sense! I totally agree that someone is definitely making a killing somewhere. Sad, very sad.

PMRpro profile image
PMRpro in reply to Charliebear68

i wouldn't mind so much if the suits had ever worked in the front line and REALLY knew what it was about. But most of them haven't.

My husband needed a new Dexascanner, the old one was OLD. He had charity funding to cover the capital cost and the staff were there anyway running the old one. NO...

Charliebear68 profile image
Charliebear68 in reply to PMRpro

Ivory towers....they need a dose of the real world.

neicer profile image
neicer

I know exactly where your company by from. I have had Mixed connective tissue disease for 22 years and the GP service is much poorer than way back then. They don't seem to have any empathy for you, it's like dealing with robots (receptionist s are the gain of my life). Hope you feel better soon, fight on!!!!

Charliebear68 profile image
Charliebear68 in reply to neicer

Bless you xx

Wendy39 profile image
Wendy39

Bless you Charliebear! Am horrified at the way you have been treated by your GP surgery! Words fail me! I hope you do find the strength to complain (especially about that particular receptionist) and inform them that you ended up going private for the MRI! Thank goodness for the LLC saving the day. Please let us know the results of the MRI. Was Dr T able to advise on pain relief in the meantime? x

Charliebear68 profile image
Charliebear68 in reply to Wendy39

Hello my lovely,

I think all the pain killers are taking the edge off but the diazepam 3 times yesterday helped me sleep ☺ its mu h more manageable as long as i don't move!

Gp surgery is gonna get it, im compiling a whole host of crap they've put me through over the years. I'm so k of being fobbed off and told bare faced lies.

Hope you're feeling good chick - I do keep up by reading everyone's posts.

C 😘😘😘

Wendy39 profile image
Wendy39 in reply to Charliebear68

Both barrels please. We'll be right behind you, in spirit. Not a good day today. Woke with a horrible headache and fuzzy feeling. Having day in bed. Kids are being good and entertaining themselves. You take care. X

PS remind me, have you seen Dr K before?

Charliebear68 profile image
Charliebear68 in reply to Wendy39

No but I know a lovely lady that has 😉

Wendy39 profile image
Wendy39 in reply to Charliebear68

He'll take good care of you I'm sure. Send him my best regards. Xx

Charliebear68 profile image
Charliebear68 in reply to Wendy39

I most certainly will do. That last post only sent the last bit! Im so sorry you're having a bad day. You cuddle up in bed and rest. I've started listening to books on audible - I can't concentrate to read a book long enough...

Im sending you massive hugs chick.

C 😘😘😘

Wendy39 profile image
Wendy39 in reply to Charliebear68

I might try that. I'm usually an avid reader but this year have only read 1 book!!! Not like me at all. But then it's been a manic start to the year health wise - meetings at MPs offices etc. I really struggle to concentrate on anything remotely taxing and have little patience to boot. X

Charliebear68 profile image
Charliebear68 in reply to Wendy39

Its deffo worth it - I'm on audible because you can download it to your phone - I know it's Amazon but it's about £7 a month for a credit and some books are 14 hours long! But always listen to an excerpt if you do - some narrators voices drive me potty!!! One of the best ones I listened to ages ago was Helen Fieldings Mad about the boy - a Bridget Jones book. It was Samantha Bond narrating. I laughed, cried and everything in between. My usual books are crime but this was fab!

You can leave at anytime and I think first book is free...worth a punt 😉

Hugs 😘😘😘

webar4780 profile image
webar4780

My thoughts are with you. I had 3 prolapse discs just over 2 yrs ago. GP just kept giving me more, and more pain relief meds. I couldn't walk, sit, lay down... no sleep, then shooting pains, so got sciatica too. I have had 3 babies; no pain relief, whatsoever, but prolapse discs and sciatica pain, unbearable!!

I eventually collapsed, and GP sent for an ambulance, to take me to hospital query stroke... I kept telling paramedics, its the pain, I haven't slept in weeks.

I finally got an MRI scan diagnosing 3 prolapse... by this time, I had also battled with gatekeeping receptionists, and I managed to persuade my GP to prescribe 2mg diazepam, knowing they would help with pain spasms (I had prolapse discs 20 yrs earlier causing sudden incontinence, another GP visited me at home, and swiftly prescribed diazepam, to rest the body). The much needed sleep, and body rest, was what I needed. It seems to me, these days, GPS haven't got a clue, much of the time.

It took 5 months for physio appointment to arrive. Physiotherapist was angry, because I had waited so long, and was then in need of rehabilitation to walk properly (I had been compensating due to pain, leaning heavy to one side). I did improve, after much physio, until, appointments kept being cancelled by the hospital, I have waited 10 months for new appointment! Lol. Needless to say, I'm doing ok, so have not pushed for appointments they clearly haven't got.

The NHS is being dismantled. It is happening before our eyes, and in our experience. It has to be this way. The public would cause such an outcry to see it go, because it is naturally, so valued, and much needed.

Since 2000, the NHS has been based on the Sainsbury business model. Profit, losses, cutbacks, people seen as tins of beans..... the NHS has long since, lost its human face. Call me cynical, but I do not see there can be a good outcome, for free care at the point of delivery, for everyone, all of the time.

I'm sure I am not the only person HU that has chosen to see private consultants, I still do, rather than go through the awful experience that is NHS. I know I am fortunate, I would find the money if my disc problem recurred, not everyone could do that. But, I really would not want to suffer again, as I did.

Sorry, you definitely triggered my disappointment in today's NHS. And, reading how you have been mistreated, whilst suffering so much, really annoys me. I feel your pain. But, what can we do? We are/have been at their mercy.

Please get well soon. I fear, your complaint to the surgery, will just end up on a desk, with a pile of others, awaiting attention.... if any member of staff, has the time, it will be read. If you are 'lucky', you will get a reply, usually providing, 'lip service', to changes that just won't happen...

Take care.

Charliebear68 profile image
Charliebear68

Oh Webar,

It's heart breaking and annoying at the same time. I too am lucky enough to have medical insurance but even getting a referral from GP is like pulling teeth. I've had nothing but trouble with the practice and the time has come to go. As you mentioned - we are not the only HU members to have been let down.

I feel a bit like a zombie with diazepam but I really need the rest!! Heads thumping but pain on the manageable side of things!!

Thank you for your good wishes, much appreciated ☺

Hugs xx

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