I discovered this morning that I have slightly blurred vision in my left eye. I overslept after a hectic day yesterday - I did Xmas for hubbie's family. So I didn't take my pred (7mg) till 11am.Anyway, I've ended up in A&E where the waiting area is packed, no masks to be seen, temperature in here is stifling.
I'm wondering about the risks and whether it's worth it?
With my history of blurred vision - I would say as you are there, stay put until you’ve been assessed…. ..and fingers crossed it’s not serious.
Sure you’ll update later.
Do you have any idea how long the waiting list is?
We were at A and E with my husband a few weeks ago and got seen in 6 hours and then discharged in 8 hours. A nurse did keep coming out to tell people to wear a mask
Do you have any idea how long the waiting list is?
Maybe not in these days, but I do know that lost sight is life long….
I always like to know how long I am waiting for. I know it is silly but I like an idea!
Yes I can appreciate that -but I think that’s a near impossibility to gauge in the NHS these days.
They struggled to meet the 4hour time 10-15 years ago when hubby was in and out with cardiac issues - so now??
we were there for 8 hours a few weeks ago. I find it so hard to sit and wait. I went for a walk and the doctor came out looking for me!
The last time we were in A&E they used the traffic light system to assess the urgency of each patient - each colour had a time scale as to how long the wait was likely to be. Receptionists were the ones to ask and who kept us updated. We were lucky that day as reception staff were extremely pleasant and helpful. I know not all are.
Reception and the nurses are unable to update me because they don't know when a rheumy will be free to see me.
Mmmm - that is a problem then. We waited a little longer than first told and that was because the duty doctor didn’t turn up. Don’t think that’s a regular occurrence. I do hope you don’t wait too long but I urge you to stay. In the meantime I would keep asking for an update. Good luck.
Wouldn’t it be better to see an optometrist rather than wait an unpredictable amount of time in Emergency?
Was a bank holiday in UK, so doubt optometrists/optician would be open…..poster has now seen optometrist today….24 hours later.
I asked that earlier in the thread - and was reminded they were closed, it being a Bank holiday. Though in my view, if they are providing an NHS emergency service - THAT should be 24/7, like the ED.
I agree with DL - and I DO know how long the waits are, my daughter is ED staff!
of course you do. It is part of life now and worse due to not being able to attend the GP surgery.
Yes, Esca says she is fed up hearing "I couldn't see my GP" but by the time they get to her they are "proper poorly"
I have to say when I went to A and E with my husband there weren’t the usual injuries you see with people seeming to have broken bones or bleeding injuries. There were more people looking ill than injured
Not OTT with drunks?
I hope your wait is not too long, but wait to be seen and hopefully reassured. Hope the chair is comfy!
Oh Broseley! Been in that boat, talking myself out of staying and mentally minimising my symptoms out of sheer boredom. Are you waiting for an Opthalmologist? This would be ideal but all the time you are sitting there, you are near emergency medical care. I kept thinking “ what if I get home and the sight goes in one eye altogether? The blurred vision maybe the blessing we don’t all get - a warning. Stay put and watch all the drama unfold around you. All the faces are engraved on my memory to this day and I hope they all had the best outcome. Let us know what happens and have thorough, regular, eye checks. You only get one pair of eyes and they don’t blur for no reason, if that makes sense, courage! 🍀
Thanks! I don't know how long the wait is, but I've been triaged. The receptionist had got all my details wrong so they couldn't access my records! Luckily I had my medic alert card on me.They didn't say anything about an ophthalmologist. I had an eye test, including a retinal photo, only 3 weeks ago. All good.
you’ve massively overdone it is my guess but stay put. Are you on your own? My husband was extremely restless - not the most patient of men.
The exhausted, young doctor I eventually saw, knew all about GCA which was really heartening. He was worth the wait.
Last time l was in A&E again with an eye issue l knew we were in for a long wait when the Nurse brought Sandwiches around!
Later on she came & advised who could go to the Cafe as to where we were on the Waiting List!
We waited 8hours only to be told l needed to be seen by the Ophthalmic Team in Shrewsbury & gave me an appointment for the following day!…
I hope everything is OK - let us know later x
Will do. I'm on my own. OH not very patient either and wanted to get home to continue clearing up from yesterday. As long as my phone battery lasts...but I did bring my charger!
you sound very organised to have your charger. Even if I go for an appointment at a specific time sometimes I need to go to the loo and with nobody around to tell it can be very awkward and. I don’t think I really need to go it is just in the mind.
Hope everything is okay and you can go home soon.
Thought about charger but not food and drink! So packed in here waiting time now 5 hours. The only drink and snack machine is out of order. A guy just had an epileptic fit on the floor. A nurse is attending him but he is having to stay on the floor because there are no staff to lift him.
Your alternative would be the emergency side of MECS
primaryeyecare.co.uk/servic...
primaryeyecare.co.uk/servic...
They have all the ophthalmology equipment (unlike many EDs) and refer you if it is appropriate
Thanks PMRPro. I have checked while waiting here and they're all closed today. Its a Bank Holiday.
Crikey! There’s an offer, let him go. Imagine coming home to a neat clean house! You’d only try to help. Sit still.
oh dear, the water machine wasn’t working when we were there and everyone too busy to sort it so a nurse boutpgth a jug of water out but it didn’t last long. My husband had to give a urine sample so they got him a cup of water from their staff room to help.
Good luck with the wait. Is hubby coming back for you?
A friend was told to go to A&E recently by the GP and the place was packed. They waited seven hours and in the end packed it in and came home.
I think I would have stuck it out a bit longer after waiting that long. It's like waiting for a bus. You convince yourself that it'll be along in the next minute, then the next, and so-on.
I know what you mean. I think he saw that the wait was going to be a lot longer and it was supper time!
Good luck. Let us know how you get on.
Still here. Still waiting.
Just seen Dr at last. He asked me which eye I have GCA in!!He has now gone to ask for advice from a higher place....
I've now been told that I have to wait until a medical doctor comes, meanwhile they've booked me a bed! My sight seems to be back to normal now, I'm wondering if I just laid on my eye in bed last night.
You could just have overdone it and combined with the late Pred dose its likely to have caused a severe Ocular Migraine which can cause blurred vision and/or, tunnel vision , squiggles, light halos, dizziness , vertigo, and intense pain in the eye with or without head pain . It is very scary and is more common if you are also overtired or fatigued.I had them prior to GCA but they were much more common when I had GCA and over did it ,when I was on higher doses of steroids and when I was having a flare.
But , as you have GCA you can't be sure , you do need to have it checked, so I'm pleased you stuck it out. You can't be too careful when dealing with the slight possibility of losing your eyesight.
I hope you get everything tested soon , even if it is very sad to have to be in hospital overnight.
When you speak to the specialists, if they rule out GCA involvement do ask them about the possibility that it could be Ocular Migraine and if there is anything they could prescribe for Migraine which you can take while on steroids so that you can treat it quickly if it happens again.
And then rest . You know what level of activity is too much now , and what damage doing too much can do so you will be able to pace yourself to reduce the risk of this happening again in the future.
It takes us all time , but in the end we learn that nothing , including Christmas , high days or holidays , is worth another trip to A and E. Get your loved ones to take over the usual traditions and jobs for social and family events in future , no matter how much you miss doing it.
Take care , Bee
Thank you so much, Bee. Your reply is very supportive and helpful.I haven't had any pain at all, or headache, just the blurred vision. My field of vision is not affected and there are no floaters or squiggles.
I definitely plan to rest tomorrow though, if I ever get out of here!
hi
I have been having blurred vision n pains behind the left eye ,I visited A&E twice in the last three weeks n clinically ruled out gca at the time , n told could be a combination of things
I’ve new prescription glasses n hoped it would ease , but not happy with vision n still have minor pain back of left eye on occasions , ivd had s flare n my vision issues is worrying me so , I’m so scared ,
You have mentioned ocular migraines Would an opthlologist be able to advise or should I go back to a&E ?
Ocular migraines can be discussed with your opthalmologist, although it is better to choose your GP as you have already ruled out other possibilities like glasses and GCA flares already. You GP can try you on a prescription medication for Migraines which can be taken with your steroids. If it continues a Neurologist may need to do some tests or getting a referral to your Pain Management Clinic to try various pain treatments if your ocular pain is not a GCA flare or the symptoms are still present while taking steroids.
To be honest unless you are having Migraine activity at the time of an EEG or a scan nothing will be visible on the test. If all other eye conditions that cause pain have already been ruled out by the optician then that rules in Migraine and they can't prescribe for that the GP does. There is little that will be done at A and E if it is Migraine and they will just recommend for you to go back to the GP so if you have tried that already it's unlikely to be worth another trip unless symptoms change or get much worse.
You can use various prevention techniques to reduce Ocular migraines including reducing screen time on phones , computers and TV and having long breaks from screens after using them for an hour. Use the tinted blue glass spectacles with screens. Avoid flashing light.
Wearing sunglasses or getting prescription sunglasses in bright rooms , especially rooms and shops / offices with florescent light , or daylight or wind ( including in winter ) .
Don't drive or use machinery when you are going through an Migraine flare if any sort these activities can be dangerous but also make your symptoms worse.
With all of the above activities you blink as much as a third less than you need to drying the eyes out and causing flickering light activity to trigger the pain at the back of the eyes.
Using a warm compress over the eyes when they ache behind does help .
Having a nap for the maximum of an hour or sitting with eyes closed helps with the pain.
Don't wear tight hair accessories , clips near the temples or very tight hats but keeping your head warm also reduces temperature induced migraines of all types.
Use carmellose eye drops at regular intervals through the day as drying eyes also makes ocular migraines worse. Night time gel for the eyes like Hylonight also improves eye pain. Drinking the recommended amount of water each day even if you are not thirsty prevents migraine pain induced by internal dehydration. Increase your intake of Vitamins A. D, E, C, and K2 to improve eye health. With your diet or with a combined vitamin / mineral supplement taken after the fattiest meal of the day to improve how much you absorb.
Ocular Migraine symptoms or pain is the one type that can take a few days to totally reduce even after the Migraine trigger has long gone and pain medication has started to work as the migraine is usually neurological pain and only occasionally inflammatory. It can also effect one eye , usually your weaker one or both eyes at once.
It can be triggered by neck , shoulder or lower spinal pain because they cause you to tense the body and put more tension in the muscles around the eyes and face.
Thank you for this detailed information. I asked the optician this evening and he said ocular migraines only tend to last 20 minutes or so. As I has blurriness for 10 hours it's unlikely. Also I had no pain whatsoever.
The visual disturbances of ocular migraines usually only last up to an hour ( like squiggles , light flashes etc.) The ocular migraines which involve pain around the eyes and blurred vision can last for days or weeks. Opticians usually know about the short term conditions but know less about Ocular Migraines that occur from a neurological or vascular cause that isn't solely caused by the eye itself. Many of the other types of Migraine can also cause eye pain.
It is quite complex , unfortunately!
Thanks. I had no eye pain, visual effects etc. So it probably wasn't this.
I can’t say thank you enough for your guidance , im at a low ebb n finding it difficult to as I have such complex prescription , I am having intervals of pain at the back of my left eye and goes across the top of my cheek bone , I find I wake I’m the night with pain behind my eye and or back of my neck , left hand side n with an incredible thirst ,
I am waiting a phone appointment this afternoon from my GP to discuss to see if their is additional medication as you suggest I could safely take
I’ve reduced all phone screen time to around 20 mins a day , my new glasses are fortunately blue tinted , sadly given up reading at this time n audiobooks only when I’m restless n can’t sleep ,
It’s scary n being able to talk to someone / this group helps greatly xx
It's now 2.20am and I'm still waiting to be seen by a doctor. I have been here for 14 hours sitting on the same plastic chair. If I hadn't been suffering before, I am now!
I hope you have seen a doc by now! Sitting in a plastic chair for all those hours. How miserable for you.
Bleary eyed suggested an ocular migraine (something I get)...usually you don't get a headache with them.
Your OH owes you a lot of pampering when you get home.
Good luck!
Thanks. Literally just seen the medic. He did a thorough Q&A and examination. He says if it was a normal person, he would just send me home, but because I have GCA, I have to wait another 5 hours(!) to see my rheumy.
Wow, wow wow, That’s a horror story and a half to be in A/E for 18 hours. You must be so tired and needing to rest . Do hope you get the correct diagnosis given you have been put through.
Thanks. I found a good companion to chat to through the night.Hubby brought me sarnies, pork pie, mince pie and drink earlier.
Just have a numb bum! And I've had to charge my phone 3 times! (Note: always take your phone charger to A&E!)
definitely worth it! I hope you’ve been seen by now. X
just read your story I am appalled at what you are going through.
I hope all goes well for you and , you deserve to be pampered when you go home take care xx
Thanks. My Fitbit logged my lack of sleep as not wearing it to bed.OH is bringing me some breakfast soon. They have bottles of water here only, as all the dispensing machines have broken. But you have to ask.
I intend to spend the rest of the day in front of the TV!!
wishing you a speedy recovery and sending a big hug xx
A number of times I have had blurred vision when taking Pred. It come on quite quickly over 1 or 2 days but then clears up after a week or 10 days. I understand it is one of the side effects of Pred, Last time it happened I visited my optician and he gave me a very thorough examination and found nothing wrong. Hopefully it is the same issue you have and it does clear up quickly. The last time it happened to me was about a year ago, and my sight has be good since it cleared up,
It'll be interesting to hear what rheumy has to say. The medic here in A&E kept asking me what the blurring was like. Was it like a curtain coming down? No. More like the sort of blurriness you get when you're not wearing your glasses. But he never mentioned it could be the pred.
Please let us all know when this marathon is over. Hoping for a good result for you - the suspense is killing me - goodness knows what it must be doing to you
Keep reading the thread! I'm now waiting to see rheumy. But getting extremely fidgety on the uncomfortable seat.
What has happened to that bed they promised you xx
They had 40 people on trollies in the corridors overnight. I was offered one of the few spare trollies at 6.30am but I turned it down. I wouldn't have been able to sleep and preferred the option of being able to get up and wander about.
When I had TIA a few years ago that was like a curtain coming down. He was probably asking to rule that out. What a horror story, hope that you get sorted very soon. That breakfast will taste great to you won't it?!
The description of a curtain coming down is a common representation of how GCA manifests but it is by no means the only way. After all, GCA is effectively a very specific type of stroke.
Or curtain going up in my case -but then I do have to be contrary- as you say not the only symptom.
I hope everything is fine once you actually speak with the rheumy. I admire how you have sat on that chair for so long…..I’m currently sitting on one of those chairs waiting for my OH who’s having a prostate scan, half an hour and my hips are suffering……. I hope to read some good news for you when I log back in
Sending hugs & support, & hope your nightmare will be over soon! S x
Thanks! I've now had the breakfast hubby brought me, but he brought, despite specific instructions, AA instead of my pred. So he's had to go back home for it. The doctor last night told me he would get me some pred, but shifts have changed and I don't trust that I'll get any. He said not to worry about all the other meds, missing once won't matter. However I got hubby to bring my omeprazole, apixaban, amlopidine, and atorvastatin. He's eventually found my pred and just come back with them. Note: always take your pred with you to A&E!
Oh no…in a hospital filled with drugs, and you can’t get the one you need! You couldn’t make it up! Sympathy for your hubby, too, though, as he seems to be doing his best to help!!!!! And yes, you may as well take all of them, keep a routine! But I did assume you could get pred, especially if there in case you have GCA!!! Keep your spirits up…& your phone charged! Hugs, S xx
Yes he's trying his best, as he's not well either and stayed with me till 1.45am last night. Couldn't ask for more.
Oh, that’s sad…hope he’s wearing a good quality mask to ward off the bugs (oh, & assume you already are!) I find, sometimes, it’s easier on your own…I felt less guilty of wasting our time, less bothered by how fedup he may be getting…& then found other people to talk to once he’d gone home!!
Masks are to prevent the wearer from spreading Covid not to prevent them from getting it!
Masks are also to prevent the user from getting Covid. FFP2 masks are great filtration masks with five layers of filtration & preventbreathing in small particles of virus. Do you really believe the only use of a mask is for somebody with Covid to wear it to stop others catching it from them?
They work both ways. So if both parties are wearing masks, the level of protection can rise to something like 98% - the number of viral particles the infected person sheds into their surroundings is reduced greatly and the number of particles that reach you is reduced by a similar or even greater amount. It does depend on the type of mask and them being used properly - an N95 or FFP2 mask is pretty good and the best is an FFP3 being worn by everyone.
nytimes.com/article/covid-m...
mcgill.ca/oss/article/covid...
Thank you. I wish they’d spread the word around, as I thought everybody knew of the double benefit! We are wearing FFP2 everywhere we go! S x
Not quite everywhere - the rate here is now extremely low but I do wear a mask in shops now the tourists have arrived! Also on public transport and in the hospital where it is required anyway. Masks were mooted here very early and I have got through 3 years without knowingly getting the lurgy and I'd like it to continue!
I think people hear/see what they want to - and it very much depends what your bedtime reading is doesn't it? Nature and The Lancet aren't to everyone's taste 
Don't forget, though, we only go to doctors or hospital! All food & other stuff is delivered, & the delivery service is excellent here! No public transport, no cafes, pubs or restaurants…it’s 4 years on 2 February for us! We went to Bath outside Christnas market, but wore FFP2 even though outside! I really thought they’d told people here how important it is to wear them to protect yourself, & was saddened by the comments today. I don’t read Nature (though I used to send in press releases & articles from our Company!) or the Lancet, but having worked for 22 years for a fine filtration company in labs & pharma division, I guess I didn’t think of others not getting the message. Numbers are high & going up fast here & if only people would wear a mask in supermarkets & shops it could save them from getting Covid. Sad.
Oh I agree wholeheartedly. I don't just read them - but the other stuff is even more esoteric! People whinge about a mask - I find it keeps my nose warm at minus whatever! I suppose I was used to skiing with one - like so many here. I've just been for a chocolate mousse and prosecco for New Year - outside in the fresh air (apart from the smokers!).
Are you referring to Bath, UK? Your profile doesn't say what country you're in. Here in Wirral we can get most things delivered, except takeaway food for which we have a very limited choice near our village. Public transport for our village is also quite poor unless you can get to the train station 1 1/2 miles away. There is no reliable taxi firm and buses are once every 2 hours till 5pm. I was surprised to find that masks are no longer required in hospitals, though most of the staff wore them. The seats in the A&E waiting room were bolted to the floor with no space whatsoever between them. The capacity was 70 but there were 150 people crammed in there when we arrived with many people unable to get a seat.
Yes, I am! First time we’d stayed away in anything other than our motorhome for 4 years due to the pandemic & our personal winter lockdown (winter no. 5 at the moment)! My country was on my profile, but ‘hide’ was on, so I’ve ‘un-hidden’ it! Guess the default may be ‘hide’! We live in the New Forest in the south & I’ve yet to find anything I can’t get delivered! We have no takeaways, except the mobile fish ‘n chips van on a Friday, but have a village grocery store, & lots of farm shops around, who do delivery, too. We are on two bus routes as well, & a taxi driver living just down the road (though last time I was in an English taxi? Can’t even remember!) During the pandemic it was great that the seating in hospitals was more spaced out..you’d think it would be one place that wants to ‘keep the bugs & viruses away’! However, I remember sitting on the floor for hours at A&E about fifteen years ago (Warwick) and that 4 hours was the norm. Much better than 24 hours, though! Hope you are fully recovered, S x
I don't leave the house without the dosette box with the medication for the rest of the day - even just to go to the village shop. I refill it with 24 hours meds if I am going any further that that. Heading for the hospital I would even take a full bottle of the special pred since they don't have that formulation in the hospital pharmacy!
My goodness me! If anything shows the state of the NHS your experience does. Just horrific for you. I DO hope thinngs have now improved for you and that you've now seen the Rheumy and received some reassurance. You won't forget this Christmas in a hurry!
No such luck! I'm wondering whether to ring the rheumatology helpline from here, it might speed things up a bit.I can't leave, as if I needed to come back, I would have to start again from scratch. They don't do appointments for specialists, you just have to wait until they're free.
Seems nothing has really gotten any better with the NHS since I lived in England in the late 60’s. That has to be very frustrating, waiting in an A & E for hours and hours on end.
It did get a great deal better post 1960s. But has gone downhill badly since 2010. Now what happened in 2010?????
Mmmm! yes, I was wondering that too🤔
I know what happened - do you? The repeated "reorganisations" under Tesco managers were already digging the grave and they were warned. The change of government just compounded it.
Well, yes, I do have my views on why we find the NHS in this sad state. They chime with yours.
There was this belief that you could time and motion study everything and run the NHS like a supermarket. Everything would run to a timetable and be so efficient you didn't need safety margins of 15% empty beds under normal conditions. But human bodies don't work like that! I was working there when a colleague was ordered to time all her procedures - mostly involving passing a nasogastric tube first ... They didn't let her have an allowance for scraping the patient off the ceiling
I hope that everything goes well for you and you get to see the right person who will help you today! You were there when I was watching the evening television last night, then when I went to bed. I woke up in the middle of the night and glanced at the ipad - still there 😱! I am now awake for the day - and you are still there 😱😱😱! I cannot believe that you have been up sitting in the chair for so long. You must be exhausted! A lot of people on this site are thinking of you and wishing you well ❤! Good luck x
Thanks, I'm beyond exhausted. Past it, as my mum would say. It's lovely to know that people are on my side.
I'm thinking "24 hours in A&E" has a whole new meaning. I will never watch that TV programme again without thinking of this.
I was thinking that too! We watch these programmes from the comfort of our own homes but when we are there our perceptions change dramatically 😱!
I am wondering now if your body might appreciate a little lie down to rest after all this time? If they offer you another trolley it might help your recovery from this awful ordeal if you are able to take the pressure off your hip, head and neck areas? I do hope that they attend to you soon 🙏 x
I think 24 hours in A&E shows a less typical version for these days, it is a London hospital with rather better staffing pre-Covid. Casualty 24/7 from Barnsley is more like it, 999 Critical condition from the Royal Stoke shows the pressures of a major trauma unit better still. And A&E after Dark from Hull probably demonstrates the nitty gritty and cause of some of the problems best, together with the most recent series of Ambulance in the NE
My daughter is having a day off from the ED and doing an ambulance service shift to keep her accreditation. She confidently expects to spend it sitting in an ambulance with a patient waiting to be allowed in.
I watch most of those too! I like "24 hours" because it tells the story behind the people. I like how they do a bit at the end explaining what happened to each patient. I like the Barnsley one because it's down to earth and the staff are so lovely. I like the 999 one because it goes into more medical detail.
I have to take my hat off to your daughter I really do! It is unbelievable to see how the health service is struggling to cope in the UK now. Things are a lot different here in Spain. It is heartbreaking to know that people who are already in so much pain and fearing for their lives are left outside in ambulances. Meanwhile there are no free ambulances to respond to other medical emergencies. I wish your two daughters well. They deserve medals for the work that they do!
You deserve a medal Broseley. Well done you and please, please let a Rheumy appear SOON!!!!
I hope you can get up and walk around without someone grabbing your chair!
Hope you get seen soon and I have my fingers crossed for you
Hi Broseley
I would stick it out if I was you. Your eyes are very precious. We were in A and E 2 weeks ago for 13 hours as my husband looked as if he had had a TIA. They did a scan and dismissed the idea and discharged him. When we got home he had another one. Lasted about 3 minutes. Was referred to the stroke unit and they found that he has narrowed carotid arteries so at the age of 81 he is on medication for the first time in his life. Our gp was very reluctant to refer him to the stroke clinic so I had to insist. He was very pompous. All down to money I suppose
Thats just mad! They usually like to cover their backs, that's why me and the other patient had to wait all night to see a medical doctor.
mmm sounds like my doctors arrogant.xx
Gees, what an ordeal! So sorry you have to go through it. The only thing I can add to what the others have said is that the last time I saw my rheumy for my GCA, after I told him I had blurry vision, he upped my PRED dose from 20 to 50 mg. I've been on that dose for 2 weeks, and my blurry vision is worse now than ever. I can't be certain, but fir me I think it's the PRED, and not the GCA. At least that's my hope.
where are you now Broseley? At home in bed I hope. Xx
No bed. If I sleep now I won't tonight. Plus I never sleep during the day.
Any Update? Just leaving to go to the depths of Shropshire where there’s No Internet 🤦🏻
Hope you have some news soon x
No rheumy but I saw a consultant (general medical) who said I had done the right thing by coming in and from my description, didn't think it was a GCA problem but I have to go back to my opticians for another eye check up because none of their equipment worked and the eye hospital had no slots. So I have an appointment this afternoon. She said if she thought it was GCA she would have had to up my pred to 60mg.She also fast track referred me to rheumatology so that they will see me in the next few weeks.
So I'm home now. I went in at 12pm and came out at 12.40pm. (!)
Addendum: she couldn't really answer the question about ocular migraines. She said she's not an ophthalmologist. She did ask if I ever got migraines. I said yes, but not in the last 10 years.
Glad you’re home….enjoy a good rest….after optical appointment. But you did the correct thing- very trying though it was…🌸
so pleased for you plenty of rest now🙏
I hope you are ok. Thinking of you.
Glad you are home and that you are now receiving the appropriate medical care x
Hurrah! What an ordeal! Xx
I can't believe how shocking the situation is! All the staff are seemingly at breaking point, and patients are getting sicker while waiting. Meanwhile our government do nothing and are comfortable knowing that they can pay privately and be seen quickly. What can we do? We need to bring back those lovely European nurses to back up our own, pay them more, overhaul the whole system and see that its run efficiently .... At least that's what I think. How can it be done? What say those of you with 'inside knowledge '? Pro?
It's so sad, and frankly terrifying!
Best wishes to you Brosely! Keep updating us!
The daughter's comment yesterday was unprintable! She says the patients are presenting ever more unwell - and keep saying "I couldn't see my GP". One third or so of patients in hospital needn't be there and that is why the ED is in such a mess - patients keep arriving but they can't send them on to the wards because there are no beds.
The first thing that needs to be done is sort social care so these patients can be got out - the Nightingale model would do, they don't need ICU nurses though, just supervision of people who aren't ready to live alone in a house with stairs. Then they need to sort their pay so they aren't working for 25% less than they were in 2012 - please note, MP's pay has kept pace with inflation. It's a vicious circle - conditions are so s%*& that they leave to work in Aldi and that makes the staffing situation even worse. It isn't recruitment that is the problem, it is retention once they start work and are snowed under and given responsibilities way beyond their experience. And it would help if they went back to the State Registration systems instead of degrees so they are learning and earning - not building up a debt that means they can't even dream of taking out a mortgage to buy a home even if they had a decent salary. Plus a proportion of the degree qualified bunnies think they are above fetching a bedpan - not all, but many do - an apprenticeship would be far more suitable.
Agree! But what can we do to make the government listen and act? They must realise that all this is true.
of course they know it’s true -but how many of them actually rely on the NHS for treatment? Not enough to make them do anything..
Yes that's what I said earlier. We need to protest somehow - but how?
Huzzah to that! This morning there was a flood of anxious parents with their babies. They were all sent away with calpol. If only they could have seen their GPs.I agree about the degree too.
Was having similar conversation with my neighbour just before Christmas -she’s in her 80s-and a nurse all her working life . Not at all impressed with current method of training/teaching/experience .
Nat works with little bunnies who have qualified and got Staff Nurse posts without ever having worked on a ward, only specialist stuff like outpatient endoscopy. So if that post happens to be a ward - they are useless, don't know how to do a drug round, arrange rotas, but think they are too good to wipe a bum or do a bed bath,
Spot on!
Couldn't agree more, PMRpro, with EVERYTHING you say, I'm putting pen to paper, using your argument/suggestion, if you have no objections...
You're welcome!
This government is waiting until it gets so bad that we all beg and plead for a private healthcare system to replace the broken NHS. Horrendous.
Trouble is - none of us would get private cover!
2 tier system, waiting in the wings, me thinks...
It can work well - that is basically what the German system was when we lived there. Everyone under a defined income threshold was covered by the state. Above that you chose a private plan. And if you wanted - you could buy top-up insurance. But it was controlled by law so the private stuff was sensible. And hospitals did both. The NHS started to go seriously downhill when pay-beds in NHS hospitals were stopped. State piggy-backed on private. I had state of the art scans as a pleb - but at hours private patients weren't asked to attend, like 11pm. It was fine.
Would have to be a complete rethink of the system here though wouldn't it ie the German type system? And I'm not sure any political party would dare to 'interfere' with the state system, so it's coming about by stealth. I would never have considered 'going private' years ago but I do now, even though it seems unfair on those without the dosh.
But with the UK system you are actually helping them because the systems run separately - if you go private, your NHS place in the queue is freed up. There is a degree of encouragement here to go private if waiting lists for the state are too long - they sub you to some extent. And of course here, if you go private you can go anywhere you like in Austria or Germany too.
The joys of living in Europe, PMRpro. I realise I am giving up my place in the NHS queue but the Consultant concerned invariably offers to see you in her/his NHS consultancy, especially if self-financing, I have found.
Re the State subbing, my brother under NHS, often finds himself in private institutions for procedures. Guess that's all part of trying to reduce waiting lists and has been going on for some time here.
Absolutely agree! Particularly about bringing SRN back.
I have to say, I so agree with you Blossom20. So very worrying for the UK.
How horrible! I hope you are tucked up in bed now having had a nice meal and that soon this will be a distant memory.
I lost part of the sight in my right eye while on 9 mg. Hang in there.
Here's a question for you. I have to take my AA tomorrow morning, which will mean getting up early. Would it be OK to carry it over a day?
No problem at all…..
Thanks DL! At least I'll be able to get a lie in!
Much needed one!
Just returned from opticians appointment. They were very thorough and checked my results against 3 weeks ago. All good. They also did an OCT which photographs the layers in your retina on 3D. It was identical to the one I had last year. The optician thought that the blurriness was perhaps a temporary rise in inflammation of the vessels around the optic nerve and told me if it happens again, to go straight there (not A&E which was useless - no eye testing equipment, took so long it had gone back to normal by the time they saw me) so they can test the eye again while I'm getting the problem. They are also going to email my GP and suggest blood tests.Now I'm very blurred in both eyes having had my pupils dilated and bright lights shone in my eyes!
A huge relief though, and thanks again everyone for all your support. Hopefully others will benefit from my experience if they get similar problems.
Gosh, Broseley, am sooo glad you've got somewhere at last after a ghastly 24 hr plus. I'm sure we all felt so for you, during your ordeal. It read like a tv drama. Hope you will now get a good night's sleep, following a restful evening. Take care. M
Well you need to be seen. Wear a mask. Best of luck.
you had quite a gang of supporters with you! 132 posts! Keep us up to date on progress. It wasn’t a waste of time, if you had needed an infusion or a massive dose of Pred in a hurry, they would have done that.
PS. They never did get me any pred, so it's a good job hubby went home for it.
Even here in the U.S., waits are very long in the Emergency Rooms. Terrible problem. My takeaway from your experience is ALWAYS carry extra pred (and other important medicines) with you sort of like what we do for cars here in Michigan. We stock them with blankets, a pair of boots, extra clothes, a shovel, food bars, things like that. I have just restocked my purse with backup pred! Glad you got some answers!
On balance your in the right place as you cant take chances with GCA so risking covid is better than blindness, you cant reverse it and it is time critical so don't let them leave you waiting!
We woke to find 4 missed calls around 2 - 4am. Private number. It could only have been the hospital. I never got my blood results so rang the hospital. They put me through to the lab, but they had no record of my tests but she said they are not allowed to give out results anyway. She said ring the doctor who did the test. I have no idea who that was or how I would contact them.I tried my GP but they had heard nothing.
The results of the blood tests that I had at 11.20am this morning at the Royal Sussex Brighton started popping up in the NHS app approx 30 minutes later. Most of them appeared within a couple of hours. Have you had a look?
I used to access my results in the app but can't any more. The surgery says it's a national problem since the government made it available to everyone, now no-one can access them!
I can for the first time ever. In the Patients Know Best Section. They appeared without me asking.
Just looked. I don't have Patients Know Best. If I go to my GP Health Record it just says to contact my GP to ask for access.
patientsknowbest.com/You can access it via the NHS app once you register.
I rang the surgery today and they haven't had them, nor have the hospital lab.
Useless!!! Did you see the thing on the BBC News about the Doncaster Surgery that sent all its patients a text telling them they had cancer instead of a Christmas Greeting?
You're kidding?
Look it up on BBC News site.
My daughter is in Yorkshire NHS, she's seen it. Hardly a slip of the pen is it!
Yes I did -dreadful!
I'm already on the Evergreen life app, but can't access from there either any more. There's a message on our surgery website about the problem being a nationwide one.
Can everyone else see their records on the NHS app or is it just me (our surgery)?
I can see info on both, but if you cannot access information from surgery app, then it’s unlikely to be on available on NHS one for you. Think the GP has to allow you access.
I have had access for years but since the government opened it to everyone, I lost it. I have asked the surgery but get told it's a nationwide problem. That's why I want to know if other people have access so I can go armed and complain.
Think it might be surgery rather than nationwide….🤔
I enquired at the surgery yesterday. I was told it is a regional issue with the IT. They had had a report through from A&E but no blood test results she said she would email the A&E secretary.
I think it might depend on who ordered the test? My hospital test results started appearing on the NHS app within 30 minutes of me giving the blood sample. I was still walking home. There is zero chance that my tortured GP took any action that fast if at all.
One final comment on this thread. Here is an article about the state of the EDs in the North West at present. I was at Arrowe Park which is mentioned. lancs.live/news/uk-world-ne... If, like me you have GCA and get eyesight issues, you are told you should go to the ED. But I have learnt from experience that it is better to go to your local emergency ophthalmologist, if its not a Bank Holiday and they're open!
PMR Pro posted some links on one of her replies above so you can find one near you.
My consultant is under a different Trust to my GP. I can see everything posted by GP but nothing by Consultant, very frustrating when I signed up to see my records.
They don't allow anyone to see letters at our surgery, so I don't see those anyway. Results are only sent in a letter from the hospitals, in the form of comments, not entered on the patient's record as lab results. So the only way I can get to see the comments is by remembering to ask for copies of the letters they send to the GP. The system does not allow them to mark this as a continued request, so you have to ask each time you have an appointment. It is so frustrating. They seem to be still in the dark ages around here.
Sorry to hear this! I had to go to the ER because of blood pressure issues following Covid. I felt the same way, but thankfully I did not catch the flu which was my concern. They will just refer you to a ophthalmologist probably. I would surely have it checked out.
Such a sad reflection of modern Britain. But so glad you got through it all and are now OK. The New Year must be better? Xx
Blurred vision - alternatives to Tocilizumab
Prednisone reduction and blurred vision
Blurred Vision
Waiting for G.P to call me for blurred vision
