The caring profession?????: Morning all. How are... - LUPUS UK


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The caring profession?????

Froggie70 profile image

Morning all. How are you? Hope this finds you all safe and as well as we can be. Sorry for the rant but had to share this with you before my head explodes. Last blood monitoring it showed that my ESR and CRP were well up (not surprised as my joints were in agony) but also that I was anaemic and that next monitoring they wanted to do additional tests and to remind the nurse when I went. So I went on Friday and the nurse was all ready and knew about it so I phoned this morning for results. Well trust me to get the most unhelpful receptionist in the practice who refused to give me the results as it’s not her job and no I can’t speak to a doctor either (might add I get my results over the phone every month). When I questioned this she said she wouldn’t be spoken to like that (like what? I was polite and all I said was that I normally get them every month over the phone). She shouted and spoke all over the top of me me to the point I had to hang up. I was nearly in tears. I called back as I hate the thought of them thinking I was rude to be told they’d looked at the results and my methotrexate monitoring hadn’t been done at all just a FBC. I honestly don’t know what’s going on at the surgery. You can’t see or speak to a doctor and now they can’t even take the right blood tests. In fact some of them can’t even be civil. I thought ESR and CRP were party of a FBC, is that right? To be honest I try and keep away from the doctors as much as possible so it’s not like I’m over burdening them and I haven’t see my consultant for over 18 months, random registrars on the phone who just kick the can down the road until next time. I honestly could cry, NHS Lanarkshire is on its knees. Sorry for the moan but I just feel that not one so called professional is interested. Take care everyone. XX

82 Replies

Sorry to hear everything you're going through, I can imagine how upsetting it must be. Have you thought of speaking to the practice manager? Put your concerns in writing as they must respond. It's crazy that there can be so much difference within the one health board, I myself attend NHS Lanarkshire and my experiences have been totally different. I do agree that it's definitely on its knees as so many vital services are having to be postponed or treatments being cancelled.

Froggie70 profile image
Froggie70 in reply to CarolMcl

Hello Carol, thank you for replying. Apparently the practice manager was off today (while the cats away eh?). I need to phone tomorrow anyway as I need my MTX prescription refilled but they refuse to do this if your blood monitoring hasn’t been done so if the nurse didn’t do it on Friday I might not get my MTX. Another fine mess. Take care. X

CarolMcl profile image
CarolMcl in reply to Froggie70

Surely they can't do that, you need your medication and at the end of the day it's their fault. Also, have you been on MXT for long? If previous blood results have been settled then there's really no reason to assume such a drastic change, I would also speak to the GP

Froggie70 profile image
Froggie70 in reply to CarolMcl

Yeah got a call a couple of months back from the surgery pharmacist when I was a week late in getting my bloods done as I couldn’t get an appointment, telling me they wouldn’t approve the prescription. Yet during the first lockdown I was told not to go for monitoring for 6 months and during that time they mucked up my prescription and I got 270 tablets delivered in one month. I think they’re losing the plot tbh and I’m not far behind them🤗

CarolMcl profile image
CarolMcl in reply to Froggie70

I would definitely speak to GP, as you've said, previously you had to wait due to lockdown......... .. ...................It's important to record how much methotrexate you take and the results of your blood tests. You'll usually get a booklet for this. Once you and your doctor have found the right dose and your treatment is working well, you'll have a check-up and blood tests every 2 to 3 months.20 Mar 2020 › medicines › m...

Froggie70 profile image
Froggie70 in reply to CarolMcl

Hi Carol, many thanks for the link. I remember the purple book when I first went on it and it was filled out each time, then for some reason it all changed and the nurse refused to fill it in. You’ll see there’s a pattern emerging. Will definitely speak to GP tomorrow (if I’m allowed😉). Thanks again. X

Possibly send a letter to the practice which outlines failings and what you expect. Ask them how they are going to improve things. Is there a better practice you could move too?

I'm having problems also with my GP practice. Since I had my positive ANA nobody will help. It as though I have been written off.

Sent them a fairly urgent email two days ago. Not heard anything back and the person who it has gone to is now off until Monday. The sort of question it asked would have always been answered immediately in the past.

I'm also finding it impossible to get the hospital blood test results. Hospital says I should get from the surgery. Surgery say I should get in from the hospital.

Ingrid1234 profile image
Ingrid1234 in reply to CarolMcl

“NHS on its knees”? Really?

Many patients are told they cannot see a GP for the next three months. Why?

Where have these people gone?

On holiday leave?

It took me 3 months for a GP appointment before covid, what with brain fog I could never remember why I made the appointment.

CarolMcl profile image
CarolMcl in reply to Ingrid1234

Resources have went to the pandemic, staff are burnt out and in a lot of cases being treated unfairly by management, they are leaving in droves. Operations including ones for cancer are getting cancelled with very little notice. The death rate of the pandemic hasn't taken into account the deaths of people who have been deprived of initial treatment and follow up care, those figures would be shocking. In Froggie70 case, courtesy cost nothing and patients shouldn't be spoken to in that manner!!

KayHimm profile image
KayHimm in reply to Ingrid1234

Ingrid -

The bma is fighting for laws to correct what apparently is a critical doctor shortage in the UK. We have the same problem in certain areas in the US. It makes taking care of patients impossible.

No wonder so many here report not being able to see a doctor.


Froggie70 profile image
Froggie70 in reply to Ingrid1234

The bit I don’t get is that pubs and nightclubs are open but doctors surgeries are still closed.

KayHimm profile image
KayHimm in reply to Froggie70

That is perplexing. In the US most doctors offices have been open for a while, certainly since the vaccine. Even during the pandemic most could get video appointments which turns out to be liked by doctors and patients alike. Many patients now are able to get seen without making difficult journeys to the doctor.

I wonder how much of this is really about the doctor shortage. So strange.

Drink enough whiskey and it'll kill any virus 😜

digger1 profile image
digger1 in reply to Froggie70

Exactly I can't work that out either

UrsaP profile image
UrsaP in reply to Ingrid1234

Hiding under the duvet!

digger1 profile image
digger1 in reply to Ingrid1234

I think GPS have now got the chance and are grabbing with both hands the chance to distance themselves from patients and responsibility.

Practice manager time - especially over the receptionist who, while she MAY have been having a bad day, should not be taking that to work with her. And if the PM isn't helpful, official CCG complaint time:

And for advice:

"If you are complaining either as a patient or on behalf of a patient you can contact the Patient Advice and Support Service, a free, confidential and independent advice and support service for patients of the NHS in Scotland. Call them free on 0800 917 2127 or go to their website at: "

Froggie70 profile image
Froggie70 in reply to PMRpro

Hi there, thanks so much for the info. I don’t like to rock the boat but today was appalling, NHS Lanarkshire are currently running a campaign about how badly their staff are being treated but some of them need to take a look in the mirror. I need to phone tomorrow about my prescription so I’ll see how that goes before I do anything. Thanks again, I really appreciate your support. Hope you’re getting on ok, take care. X

PMRpro profile image
PMRpro in reply to Froggie70

Sometimes boat rocking is required. A friend of a friend is in hospital because their BP meds weren't checked and they were dx'd with LOW BP. But no-one stopped the duplicated HIGH BP meds....

Froggie70 profile image
Froggie70 in reply to PMRpro

That’s shocking, I hope they’re ok. I know people are busy and under pressure but suffering its getting to the scary stage. X

282523 profile image
282523 in reply to PMRpro

I used that number and service a few years and it was invaluable.

not just lanarkshire, tayside is too. cutbacks all over.

Froggie70 profile image
Froggie70 in reply to suzannah16

Hi there. Yeah my Dad’s friend’s daughter is a consultant (different health board) and says it’s awful and getting worse. They are so many rheumatologists short across the country and no way to fill the positions.

PMRpro profile image
PMRpro in reply to Froggie70

Not just across the country - it is a worldwide problem. It's us baby boomers having the cheek to all retire at a similar sort of time. And then increasing the number of patients needing rheumatological care ...

How very dare we?????

stillsdisease profile image
stillsdisease in reply to PMRpro

And it’s taken the powers that be 60 years to work this out!!! Shocking beyond words.

PMRpro profile image
PMRpro in reply to stillsdisease

They still haven't by the look of things!!! BoJo at least apparently doesn't realise just how long it takes to train specialists - 7 years to be a junior doc and a further howevermany to become a consultant - and then they are mean on terms and conditions ...

I am very lucky here - I just phoned my GP to request the 5mg pred tablets I discovered last night I had run out of. SHE answers the phone so no receptionist or nurse to do battle with, I tell her what I want and it SHOULD already be at my village pharmacy to pick up (if she didnt forget, she usually does it as I speak to her but she may have had a patient with her). At worst the pharmacist will give me a pack and I will have to pay for it - but he will refund it when the e-script gets to him (a pack of my pred costs 27 euros, not your run-of-the-mill stuff)

stillsdisease profile image
stillsdisease in reply to PMRpro

Excellent service

No drs appointments by phone let alone face to face in Cambridgeshire since pandemic started. I’m going to see the ‘wise woman’ 🧙 apparently she has some leeches!

So sorry 😞 it’s not just your surgery I can assure you, more a sign of the times. Moan away it’s tough times at times 🤗x

Froggie70 profile image
Froggie70 in reply to stiff19

Thank you. I was so taken aback by it all. I think I’m becoming a wuss in my old age. Take care🤗🤗.

stiff19 profile image
stiff19 in reply to Froggie70

I know what you mean, I think we just want to be treated with respect which is getting harder to come by. Treat people as you wish to be treated I say, a bit of kindness goes a long way and manners are a must but becoming lost. No, not a wuss , it’s understandable to be taken aback. You take good care and I hope you get a better response tomorrow if you phone , over worked, bad day, it’s still not ok or an acceptable excuse for them or anyone to be rude 🤗🤗

Froggie70 profile image
Froggie70 in reply to stiff19

Thank you I really appreciate the support, it’s made me feel better and definitely phoning back tomorrow. Take care 🤗🤗

There’s more help available at Amazon than my drs! 😜

Yes at least you get a £5 credit when they do wrong 🤔🤪

Hi froggie.i have patient access to my gp records online.I'm on monthly bloods for my mmf meds.they are usually back and on my records the next day or Monday if I've had them done on a Friday so I can check them myself and then request my script online at the same time .i have my bloods done at path lab ( can't get bloods out of me at drs 🙄) so I always check the labels on my bloods form too.xx

Hello. That sounds so much better organised. I think if I asked to see my records the receptionist might spontaneously combust😉

Well at least you wouldn't have to try and get past her lol. Mine was set up before covid but it was a form I filled in and it was at my gps discretion whether I got full or partial access.i have full access to mine and partial access to my elderly mums ..mine is set up with patient access might be worth a Google. I was told off once by my gp for saying the receptionist was from a different planet 👽🤭. When I fell down a hole in June and ended up going to A&E in an ambulance one of our receptionists told me to ring back the next week for a phonecall the following Thurs for pain relief.... 🤬. I d come within a midges whisker of breaking my ankle was on crutches in compression bandages hadn't slept for 2 nights and you want me to wait 8 days for pain relief ( I take pregabalin so can't just take extra) .I told her I'd ring CHOCS which is our out of hours services so she said she would ring me back.dr rang back and gave me a couple of days of codeine...that was all i wanted it was ready to collect within 30 mins ! I stand by my theory they are from a different 🌎 . Keep smiling my lovely xxx

I agree - but they range from outstanding to "why are you doing this job?"!!!

Definitely no consistency x

Barbara17 profile image
Barbara17 in reply to Froggie70

In Scotland they won’t allow access to our records on Patient Access. I do order some of my repeats that way but since the pandemic I have to phone for mtx and I can’t put anything in the Notes part of the form, no reason given! Also my surgery in Lothian now only gives a 28 day supply of anything which results in me ordering almost every week! Then I have to allow ten working days for a prescription to be ready. Try and keep track of that! I’m confused enough without this ‘help’ from the surgery. And I can’t remember the last time I spoke to a doctor. However we do now have a lupus nurse based at WGH in Edinburgh and she is wonderful!

Froggie70 profile image
Froggie70 in reply to Barbara17

Hi there, we’re the same no more than 28 days worth although they made a proper cod of my MTX and gave me 270 one month. You couldn’t make it up. That’s brilliant you have a lupus nurse. Take care🤗.

DJK99 profile image
DJK99 in reply to Froggie70

Hi Froggie - so sorry you're going through this. I have had similar off and on with my new surgery of two years. Like SpanielLady, I have got access to systmonline (which is like Patient Access but far inferior). You can have this too - just ask at reception for the form to fill in and give it back then you get access with a password they send you. It's great as you can see all your bloods now and historically and your clinical letters and the notes the gps etc put on the system. It's very revealing.. Usually I get my bloods put on there within a couple of days as it needs a doctor to review them once back, and then they upload them. I waiting on tenterhooks for mine taken yesterday as sadly have a grim recurrence :(.

And definitely speak to the practice manager... they're probably burnt out too with similar complaints but it has to be done... I'm sure that receptionist has all sorts of hell going on in her own life.. but she is on the front line of a caring profession and needs to be reminded of her role and what it requires of her in "the caring profession". If she isn't able then she needs to be put in a non-public facing role...

Good luck with your tests and getting your methotrexate - this should all work like clockwork for you and all of us... essential for your health remind them.

Let us know how you get on, keep safe, you're not alone. xx

Oooooh maybe give it try🤪

I take it you’re in England. Scotland doesn’t allow us access to our test results or any info apart from repeat meds and pre pandemic, booking GP appointments online.

Sorry ....that's a shame and unfair as it makes it so much easier .you would think they would welcome it as it saves me having to ring up every month to see if my bloods are back and ordering my mmf over the phone 🤷‍♀️ x

Absolutely. I was told by a GP once that it would require a huge IT upgrade and NHS Scotland doesn’t want to privatise or risk breeches in patient confidentiality or data protection/ online security. I think it’s more likely a devolved issue relating to the decisions about allocation of resources in a sparser population and a kind of dubious paternalism too I’m guessing? GP practices seem to be less accountable here and unlike hospitals and care homes, prisons and schools they aren’t inspected- which I find very worrying.

I think that's possibly rubbish lol.with patients like ourselves on dmards bloods who need alot of monitoring it makes sense to have access like that.i also have access to the renal portal at Royal preston for test results.ok maybe not necessarily for the occasional blood test and I don't suppose every patient would want that access x

CecilyParsley profile image
CecilyParsley in reply to 282523

I don’t think we have access in Wales either. I certainly have not. If I want blood results, consultants letters I have to request them from the Practice Secretary who is more helpful than anyone there.

So just to illustrate the difference again because I think it's important to know so we can all ask for better. I too at my local rheumy had to fight to see my results (first time that ever happened since I'd been diagnosed). At the london centre of excellence they give all patients an online account called My Chart. It also has an app. All my letters, appointments and results (blood, x-rays, eye exams) are sent through to my account and I can see them either online or via the app on my phone. So for example I had my eye test Monday at 1pm. Got my results 3 hours later at 4pm. Bloods took a few days up to a week for some. X-ray was same day. It should be like this for everyone.

I’m in Dorset and we don’t have this if visiting hospital here but if under southampton( I was referred to facial there) , I was signed up for app and all this on it, sadly it’s not my hospital I was only visiting so not much use to me 🤷‍♀️. I think it would be helpful to all and would be good if available to everyone .

Sorry you only had a passing go stiff19 but the like is because I agree with you.x

Totally sympathise. In my opinion GPs are a hindrance, and generally incompetent. And, as you've found, often extremely rude, but then complain that we're being rude. I too am often angry and distressed beyond endurance.

Sorry to hear you are not getting the propped attention that you deserve. I would write to the practice manager and put all that you have just written down so they can read, and hopefully absorb you experience. Good luck, and please post their response.

I would just like to add, (please everyone, don't shout me down). I don't understand how the NHS can be on its knees, even with Covid. I know they have been under tremendous strain with it. But we have not been paying millions into Europe, or spending money on treating patients who over the past 18months have not had any treatment. So to me, I could be wrong, it's like The King and his new suit of clothes.

So sorry you’ve had that experience Froggie, it’s unacceptable. Sounds like your surgery has taken lessons from mine where they don’t know one part of their anatomy from their elbow… as the saying goes 😉 I would email practice manager stating that you were really stunned by receptionists behaviour and you expect to be able to get your results going forward.

I’ve not read others comments, but ESR and CRP are separate tests that have to be ordered separately , not part of a standard FBC.

Maybe the receptionist got defensive as she looked you up and could see certain tests you needed hadn’t been done!

Does your surgery have an online booking system? Mine has e -consult.

Basically you write all of the information, etc you want the Dr to know, request you are emailed a copy of your post and wait for a response.

After going to the drs for several years with CTD symptoms and getting nowhere I filled the e consult in with my symptoms, concerns about the amount of visits and years I'd been asking for help, attached photographs etc.

I was phoned very late that evening by the top gp, referred to rheumatology and was seen within 3 was and this was during the first lockdown.

I really feel your frustration so hope you have the above service available to you as you clearly get further by being able to write it down, more weight behind what you're saying , wrong I know but if it works, take advantage of it I say xxx

Oh oh oh I so relate to this and am so sorry for what you’ve experienced from some nasty person who shouldn’t have that job at all. This behaviour is completely unnecessary - especially for those of us with chronic conditions who really need kindness about the fact that NHS Scotland doesn’t let us access our test results online yet.

Full blood count doesn’t include CRP and ESR unfortunately - these inflammatory markers have to be put under other headings. But the monitoring you are getting should be called DMARD and include those routinely anyway.

For me I see the only person in my practice I actually really like and she’s a care assistant. She routinely runs them under that DMARD heading end will add others if I ask too. She doesn’t ask questions but she is a hoot, has a great heart and just prints off my test results of the previous 2 weeks or month for me so I at least have them and don’t have to go through what you’ve had to go through in order to obtain them. Better late than never.

Generally lately I speak to a GP, a nurse or a practice pharmacist sometime during the week after so I ask about them.

But following last week’s awful debacle I registered online yesterday for the only other GP practice covering my post code after 5 miserable years with this one. It took forever and a day as I filled in my husband’s too and the new way of registering is online or by post so the forms and requirements are more extensive and involve scanning documents etc as well. I keep wondering - as it’s an application to register - what if they say no??! 😬

But my old friend visited yesterday and I told her my sorry tale (she had plenty of her own to tell me first as both her parents are dying😢). She said hopefully they will be really keen to get shot of me as I’ve made formal complaints twice. Once about their appointments system a few years ago. I had help with this from a local welfare rights officer who drafted the letter on my behalf.

She tried to get through via reception herself to get an email address for the practice manager but after half an hour ringing was put through to the most taciturn receptionist who snapped at her that they don’t give out his email address so I’d just have to use snail mail. So she experienced what I go through simply to obtain my results first hand! The reply wasn’t particularly useful the appointments system went online and was briefly much better until the pandemic hit.

Then earlier this year I made a second complaint anon via Care Opinion. This time it was about a GP. I was invited to phone a number and speak to the local director of primary care - who is also a senior partner in the neighbouring practice I’ve just tried to join😬

He phoned and we spoke for ages. I monologued a little towards the end and he probably thought I was a bit off my head! I said things I probably shouldn’t have - but I was on my way home after 2 nights and 2 days of Iloprost infusions which are pretty toxic, long and I’m not good on phone when extremely fatigued - I have no brakes!

So he didn’t get back to me as promised to tell me how his letter was received but there we are. I suspect my anger was a little bit too much for him after so much time shielding and deteriorating unseen. So maybe he will say “nah not having that nightmare woman as one of ours” when they get around to looking at my application and new patient questionnaire as my name is fairly memorable.

Anyway if my application to register is accepted then I plan to send a lovely card to the healthcare assistant who said “see you in a month and look forward to the next instalment on your house move - you’ve made my day!” - tears of laughter spilling again as I left. I’ll write that she always brightened my day and I’ll miss her. She was the only person in that practice who has actually seen me in person for 18 months, other than receptionists letting me in. I’ve lost 2 and half stone or more unintentionally since any of them saw me!

NHS Scotland is certainly on its back now and I worry greatly about how it will even get back on its knees let alone on its feet again. XX

That is dreadful. I thought ESR snd CPR generally part of FBC. too. I would drop a letter to a named dr 'private and confidential' or to practice mgr. Outlining that call. And ask.that thecleyter be kept on your file. Keep a copy yourself.

I have heard recently of another who asked for some spurious bloods to ge removed from file...the next thing she was being sent a patient/dr contrct!!! All weighted so dr could do. say, control everything, including any self medication or she would be evicted from surgery.

It does make me wonder...

Doctors receptionists surely must be from another planet. They seem to think it’s fine for them to be rude and abrupt yet get offended if you are firm but polite! They seem to think they are medically qualified. My late sister was 56 years old and terminally ill. We had been on NHS Cymru all night for advice as she had a huge swelling in her left groin and had a history of blood clots. She was bed bound and in the final stages of congenital hepatic fibrosis. At 8am the nurse on the line said to phone the GP surgery and say they had said she needed a home visit within 2 hours as a matter of emergency. The conversation went like this after I had explained exactly what had happened.“So you will need to put her in the car and bring her to the surgery”

“Don’t be so daft, I have just explained that she is bed bound, cannot support her weight and is terminally ill “

“Excuse me there is no need to be rude to me like that, we will not tolerate abuse on the phone and we can terminate the conversation”

“What on earth are you on about? I have been up all night with my sister who is really ill. We need your help so will you please get my sister an appointment for the doctor to call?”

“Well I’m just telling you that you should not be so rude and we will not tolerate it”

“ I wasn’t rude but can you please arrange an urgent home visit for my sister. She is very ill and needs help as soon as possible. She is in terrible pain and the groin is hugely swollen, she has a history of clots and I am worried as her warfarin has been stopped”

“Well I’m am pointing out that you were rude to me and I am not prepared to take it”

“Are you refusing to make the arrangements for my sister or not because if you are I will have to dial 999 and tell them”

“ well I am pointing out that you are not allowed to abuse us”


“I will get a doctor to ring you when they are free”

I spoke to the doctor at about 8.45 and they called at 3pm! My sister was admitted to hospital only after we went for a scan that day and lived for just 3 months after. The hospital stay was another story but not enough time to list that here.

Froggie70 profile image
Froggie70 in reply to Bowenlady

I’m so sorry about your sister, I’m sending you a virtual hug. What kind of person would go on about supposed rudeness that didn’t even happen when they have someone obviously in need and asking for help. I just can’t understand the mentality. Thank you for your support and take care. XX

Bowenlady profile image
Bowenlady in reply to Froggie70

I think she was expecting me to apologise which I wasn’t going to do because I feel she was the one being rude not me. I was besides myself and in tears speaking to her, believing my sister was going to die before we could get help. I had been awake all night on the phone and administering morphine in accordance with the nurse instructions. I had explained all this. Don’t you let them bully you. You are not asking for a favour it is your entitlement. Keep insisting that you want to speak to the practice manager and make a list of your complaints before you phone so that you sound calm, informed and prepared. You realise that they are probably busy but she has to be respectful and listen to your issues. She is meant to be a filter to get people to the right treatment not a barrier. Say you are phoning the manager, before you decide whether to report the issue to the area Health Authority, to see if you can resolve the issue. I’d be furious if I were you. ❤️

Oh my goodness what a Jobs Worth. An inconsiderate, insensitive person. We all have off days but to treat you this way at a time of such distress is unforgivable. I am so terribly sorry to hear that you lost your sister. Huge Cwtches to you xxx

Diolch. My little sister died at the age of 56. If I told you the horrors of when she was in Morriston hospital you would not believe it. Just 2. She was double dosed within an hour with 12 hour slow release morphine despite the dangerous drugs protocol. She no longer need a double cannula in her arm but left it in for 8 days without running any liquid through it and despite my sister complaining of pain. They put another bandage on top of the original without examining it. After 8 days she complained to the consultant that her hand was hurting and smelling. They took the double bandaged off to find the hand badly infected and they had to cut the cannula out of her! That’s just a start! X

Froggie70 profile image
Froggie70 in reply to Bowenlady

That’s horrific and I could well believe the horrors. My Mum was treated so awfully after a stroke it was heartbreaking. I’m thinking of you, no matter how long passes these thoughts weigh heavy as you only want the best for loved ones when they are ill, not to be treated so abysmally and without respect. Sending you🤗🤗

Oh I am so sorry to hear this. I remember my poor Mam in Nevill Hall. I had sat by her bed for days and went home to change my clothes and get her some clean nighties. I returned to find her slumped in a chair on her own in an end ward . Her drip had run dry, her stomach bag had overflowed all over her and she was in a puddle of her own urine and the syringe driver had run out. I went nuts. She was 61 with terminal cancer.I decided then and there to discharge her and take her home for the palliative care. My GP was truly wonderful as was the Hospice nurse. When you see someone you love suffering needlessly it is so hard to bare I know bless you xxx

It’s awful. We have to pay into a system with no choice, that promises health care for all and it lets us down when we need it. You were so strong taking her from there. I have joined Benenden Healthcare many years ago and my whole family have used it and had many operations and consultations between us all. But when you are terminally ill people just don’t seem to care. Live every day to its maximum. Says she at 8pm when she is considering getting out of bed! Took my grandchildren out in the car and had lunch out. Did a few chores now absolutely drained! Such is life with Lupus eh! X

In fairness the GP I had then was an amazing man. He would knock my door at 7am. I would try to tell him about my Mam and he would say there is nothing more I can do for Meg I am here to check on you now put the kettle on. I was 26 on my own, just finished my Social Work Diploma. Anything I wanted to make our lives easier I got it. It made the practicalities of caring so much easier for me. The Hospice nurse was a true gem. She knew I was not sleeping lying by the side of my Mam’s hospital bed so she brought her massage table and essential oils, she brought take always and was such a tremendous support. When my Mam passed she let me help her lay her out, came to the funeral and checked on me afterwards. You could never pay for that dedication. I was so grateful that she was in my arms in the comfort of our home. I guess there are good and bad in every profession but it does really concern me that we seem to be too heavy with Jobs Worths.Well done you for getting out for lunch with your grandchildren. I have hardly moved from my chair today as it is a bad day. I guess all we can do is take it day by day xxx

That GP sounds amazing! As you say there are good and bad everywhere. IF you can get past the receptionist! I have tried to do the walk to the town centre from my house a few times a week. When I was fit and healthy it took 3-4 minutes as I timed it because I worked in the Civic centre the other side of the shopping mall. The other day it took me an excruciating 25 minutes and many tears to get home. I have started to use a stick because of the hip pain. I use it in the right hand because the left hip is hurting, then the right hip gets worse so I swap over. My husband says I need two sticks but I am so embarrassed using one. An acquaintance came to my house the other day and in the middle of the conversation asked how I was. I said I’d had about 5 weeks of really bad pain but was okay at that moment. She said with quite a nasty tone “well you looked okay when I saw you the other day”. Well that’s okay then is it ??? Then she saw me up the town centre a few days ago where I was struggling and she kept saying “are you sure you’re okay?” Hell would have frozen over before I would have asked her for help or sat down in front of her on a bench. I know there are days when I just can’t get off the settee too so I try to go if I can but it’s getting harder each time. Im sorry you are having an even worse day than usual. Lots of hugs and healing sent your way. I really mean it.

Thank you so much. I am really poorly today. I always get a fever, bleeding gullet sores, mouth and genital sores in a flare and on top of my knee problem I use two sticks, my leg gave way and I lunged forward thrusting all the weight through my left shoulder. I have a sciatic type pain that is just relentless. Hilariously I had a physio telephone triage today and apparently if I want advice on my shoulder I have to refer myself again as they will only deal with my leg 🙄. He then made things worse by saying as I was insisting on a face to face appointment I had to accept that I was at significant risk due to my AI conditions, obesity and because I am ‘ elderly”. I know I am 60 next month but really! It made me giggle when I got off the phone. Honestly try two sticks. When you use one your gait is affected. NEIL bought me two very pretty ones with purple flowers that are weight adjustable and so comfortable from Cool Crutches. Look after yourself xxx

Ooh I’ll have a look at that. John, my husband, wants to buy a mobility scooter that we can put in the car. He has mobility issues so I sarcastically said we should have one each. He thought that was a good idea. Now I see him frequently looking at sites with mobility scooters, 🤦 and think he is obsessed with the idea! Talking of the age thing. I went into a shop with my granddaughter to buy some tops that had to be ordered. We both have bright ginger hair. As the lady was sorting the order out my granddaughter said “Mammy is working tomorrow in Morrison’s ”. The lady looked at me and said “oh you’re working in Morrison’s then?” I looked at her amazed. And explained that my granddaughter is 7 and I am 65! Then I go into a cafe and someone says to her child “please move over a bit and let this older lady through” nice but - HOW VERY DARE YOU! I do feel that once you hit that 60 mark people start to think your medical needs are not as important as they are for younger people. I have complained here before about dealing with one medical condition at a time. This is how it takes so long for Lupus to be diagnosed. Still waiting for over a week for the rheumatology nurse to ring me back because I asked for urgent advice. GP won’t deal with anything but very urgent because they are running limited service. As well as one foot swelling badly for 10 days I also had about 7-8 round rash things appear on my legs that looked like discoid lupus. I was scared. I have taken photos and they are starting to fade now but I didn’t know if it was “just” Lupus or something vascular pertaining to the swelling. All calm now but this disjointed and one at a time attitude stinks. Moan over for today! Thanks for your advice. X

You will love the sticks, you can customise and have dogs, cats, rainbows, flowers on them. I cannot get on with crutches. Once the physio gave me gutter crutches and as I fell over I could not put my hands out to save myself so face planted the gravel..I still have a tiny bit right on the end of my nose as a souvenir 😂. A good moan really helps especially when it is to people who truly get it xxx

Oh Froggie I'm sorry. Honestly it's such a lottery. A good GP is essential as they coordinate all the referrals. Do go to the practice manager and PALS but if that doesn't work maybe have a look at other practices around the area. Sending you strength as I can imagine how stressful this

Hi Froggie sorry you got such an unhelpful receptionist, you should definitely complain. I believe that a full blood count doesn't include ESR or CRP, I think these have to be requested separately. However they should have been able to get these results from the same sample as long as its specified to the lab.

NHS Lanarkshire: my sentiments exactly.

Hi Froggie, well what an objectionable receptionist. I lost my rag with the receptionists a few weeks ago when they refused to let me speak to a GP or nurse and the Pharmacist wasn’t in but advised ring back Friday. I rang back and she said you didn’t book an appointment so you cannot speak to him until next week. I was furious. I said I have fluid leaking out of my legs, my toes are white where the circulation is being cut off with the oedema and I have had three episodes of cellulitis this year. She responded if you are that bad you should go to A&E. I said with respect I find that response ludicrous. Why on Earth would I put myself at risk in a pandemic when all I want is diuretics. I was on a roll saying that you told me on Wednesday to ring back you said nothing about an appointment. She said who did you speak to? I said it was you. No it wasn’t I cannot remember speaking to you. Well I can remember speaking to you. This is not good enough so what are you going to do about it? Within the hour the Pharmacist rang me and I had my diuretics and relief. I am so sorry that you had this experience. I understand that they are the gatekeepers but they need to put themselves in our situation more. Good luck with your phone call tomorrow lovely xxc

Hello there, talk about having to jump through hoops. I hope you’re doing ok, thanks so much for replying. You take care of yourself🤗🤗

You too lovely. Don’t take no for an answer tomorrow xxx

Just wondering if there is any way of getting hold of stats. For example for each surgery clinician type: Partners, Salaried, Locum, Advanced Nurse Practitioner, Paramedics etc

What is appointment load - average time per working day for each of (i) face to face, (ii) telephone, and (iii) online.

Since my positive ANA there has been a noticeable change in staff I've ended up having an appointment with. I think the Partners are choosing their patients and don't like some medical triage and give more difficult stuff to the least senior.

Before the positive ANA, and uncomplicated things I used to get a Partner GP always

Since the positive ANA it is Advanced Nurse Practitioner or Locum.

I don't mind as they seem to help the most (even got me the ANA when that failed asking Partner GP), but it is obvious to me that they both are exceptionally busy. I'm probably not the only patient that has been reassigned to them.

I do wonder what has happened to the Partners.

Are they at work still - I know they are part-time ( the ones at my surgery are all now 2 or 3 day a week partners) but when they are in, do they still do appointments?

Do Partners just triage and advise locums and salaried colleagues on remit - what to say in appointments etc?

Wondered if others had witnessed any changes over the last couple of years?

Has anyone ever had an online appointment with their GP ?

I remember reading at the beginning of the pandemic that this was how appointments were now going to be..but I've never had online appointment with a GP...

At the surgery I go to, I think all non face-to-face are now phone calls.

Well that is my experience.

I totally agree with what you are saying 100% Forth valley is the same .Mine had my results and he forgot he had them .Even saw a dermatologist and I've just got a copy of my notes .Telling him in May to look at my bloods as they were not right. She never took any but could see them in the system. Now having lung bowel and symptoms of scleroderma my face had gone up like a ballon .now skin is going tight and waxy all over my body Raynauds finger white at the tipsBPgoing really high then really low weakness in one side . and going from my bed to a chair.He eventually sent a letter saying he was sorry but he had done my bloods and forgotten. Now I am tracking my notes from hospital..This is after 19mths of trying to get someone to believe me .Saw a great least he had the balls to say they had failed me ...not him it was the first time I saw him and was fantastic totally agreed with everything I said totally backed it up with test that they did ! I totally think the whole NHS is letting more than just a few ppl down just now .They are totally hiding behind covid for the mistakes that are being made ...The only thing I can honestly say the office team in my place have been honestly fantastic with me ...probably because they have visibly saw me going down .But I have heard a lot of what you are saying .I do hope you get answers asap ...But totally feel your pain .As many more do ! Hugs to you and Take care X

I'm sorry to hear that the reception was very rude. I thought I fife nhs was bad and on it's knees but it seems its the whole of Scotland. I hope you get past the rude person and be able to speak to who can help.

Froggie70 profile image
Froggie70 in reply to digger1

Thank you. Managed to speak to GP but he wasn’t particularly helpful either and said I can’t get my blood results. What can you do? The day people start treating health the way they shout from the rooftops about bad banks and money we might start to get somewhere. Can you imagine if you went into a bank and asked for your balance or money and the teller said no we’re too busy. It’s be all over the papers. Anyway you take care and thanks for your support🤗🤗

It’s the whole of the uk medical profession, some will always be rude but some in response to being undervalued in every way. This can only get worse. A friend who works at a local hospital in administration says resignations from every sector are submitted everyday with no new applications for the roles. I guess we’re going to have to put up with the rude ones! 🤨

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