Totally tee'd off with phone consultations and ho... - LUPUS UK

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Totally tee'd off with phone consultations and how A&E are (not) working.

Boudica1 profile image
19 Replies

How many of us here and with other long term health problems are tee'd off with the way we are being treated?

I know I am.

Little to no access to consultants unless it's via a phone call.

If you end up in A&E a doctor who knows nothing about your illness or medical history and after blood tests and whatever says everything is "normal" BUT? And wants to prescribe medications and tells you that you should ask your GP for a referral?

Is this really the way we have to go to get the help we actually need?

I know that there is this thing called Covid19.

But it's not the only thing in the world or though you wouldn't think so.

Referral? Are they having a laugh? With everything else put on hold including some cancer and heart patients along with heaven knows what. Plus waiting lists growing with new and existing patients.

And to cap it off news reports saying hospital specialist working at 50 percent.

Is that because they are paying more attention to those who are fed up with waiting and choosing to go private?

Don't jump on me please as most if not all of my consultants at the hospital I have to attend have private patients who are either fed up with waiting but can afford to pay to jump the que and then get to see the consultant quicker who then puts them on the NHS so that they don't have to pay any more.

That leaves those of us who don't have the money waiting even longer.

Getting to the point of not liking these doctors who play private and NHS at the same hospital which is supposed to be NHS but at the same time treat private patients and in the same building.

How many of you have had to be a inpatient and seen on the wards single rooms? Did you know that you have to book these single rooms?

Only private patients can do this but it's a NHS teaching university hospital.

Sorry for the rant. Feeling shyte and totally tee'd off with the two tier quality of care in a NHS hospital.

I can understand that people want/need a diagnosis, we all do. But it should not be at the same hospital with the same staff and not a University Hospital with doctors and staff working for the NHS and being subsidised by the NHS.

Sorry if anyone is offended but this is what is happening at the NHS trust hospital that I have to attend. It really is a 2 tiered system.

Oh as to the one person rooms on the wards? When I ended up having to stay in I asked if I could get a room to myself and the response was had I booked one.

Since when can NHS patients book a room in hospital?

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Boudica1
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19 Replies
happytulip profile image
happytulip

I'm really sorry that you are having a hard time. Its extremely difficult not having access to your own Consultant or their team. Even though I'm in hospital I am not being looked after by my own consultant, but so far the care has been very good.

I'd be very interested to hear which hospital that you attend?

I am currently in a side room because of my medical history, not because I've paid to be here and after having a 15 year career in the NHS I have only ever seen patients placed in side rooms due to infection risks and isolation policies.

Sideroom are few and far between on the four trusts that I have worked in and I've never seen a private patient on a ward they were all treated at seperate private hospitals.

I do know that there is a private hospital being built in a separate building next to my local NHS hospital, it is owned and paid for by the Trust with a view that the money generated will be ploughed back into the NHS hospital rather than being for profite. The idea was cooked up when all the NHS cuts were being made and the hospital decided it needed to be more self sufficient.

My understanding is that the NHS Consultants have to work their contractual hours and then only do private work on top of that but recent tax/pension changes means that some consultants would be doing a certain amount of hours for free. Its a problem that the government didn't forsee so I can understand them not wanting to work for free and picking up private hours instead. Although this is no help to those who need their care and can't go private.

As for A&E, I worked in that environment for 15 years and it is so difficult for an A&E doctor to deal with us zebras. We're not like 'normal' patients. Auto-immune patients are so complex. Emergency Medicine is just that, emergency stuff. To diagnose something AI related it generally needs a specialist to go through things with a fine tooth comb and it sounds like what you need and soon.

I only get treated seriously in ED now because I have a management plan written by one of the consultant. Not because I'm a frequent attender but because I'm a complex patient and have a rare cytokine non-response so even if I'm septic blood would still look ok, even though I won't.

I'm so sorry you are having it tough.

Can you get your GP to chase up any referrals or are you already under a specialist? I find phoning the secretary is often very helpful, do you access to a specialist nurse??

Times have been tough because of Covid and I'm quite convinced that I wouldn't be in hospital had I been seen in April when I should have been.

But from what I can see here, all the nurses and doctors are giving exceptional care so far. They all say that they need a holiday and are still working flat out. Covid had restricted them and added to their work load so much. Some have rashes on their faces from the masks that they have to wear for 13 hours, even in the staff room.

Every trust is different so I'm not sure about your hospitals side room policy but at anytime I think that people should be cared for in order of clinical priority, not who's got the fattest wallet.

I hope you get some care soon and feel better. x

RosieA profile image
RosieA in reply to happytulip

Oh HappyTulip. I do so hope you are able to return home as soon as possible. It is indeed a great shame that reduced provision has potentially led to you being in hospital. I think the Gov and NHS response to Covid 19 has been a case of dammed if they do and dammed if they don't. Such complex and difficult times. Sending you warm wishes. x

Oshgosh profile image
Oshgosh in reply to happytulip

I feel sympathy for HS staff.

They have worked hard and are now suffering from constant changes of policy.

I don’t know they will catch up,given the ever present pressure on the system and the prospect of another Covid spike.

Re the A N E I feel sorry for them,having to try to deal with us special zebras.its not what they are there for have a safe day everyone.

Barnclown profile image
Barnclown in reply to happytulip

Thank you for all of this HT 💐🍀❤️🍀❤️ Coco

RosieA profile image
RosieA

I think Happytulip has some wonderful ideas for you. Like her, I have only experienced side rooms being used for those in the greatest need, either for infection control or those bless them, near the end of their days. I do so hope you manage to find some resolution soon. x

Boudica1 profile image
Boudica1 in reply to RosieA

At our hospital the side rooms are pre-booked and I was told that by the nurse as I had found myself having to stay in and was worried because it was a observation ward with patients with anything and everything. The room I was in had four other women one poor soul even I could see was dying, another one had dementia and totally confused and distressed and was banging on anything close to hand and shouting and screaming the poor woman had been there a long time waiting for a place in a nursing home. Another lady was having to have some extremely nasty treatment for oral cancer and was vomiting, she hadn't had a minutes peace because of the dementia lady and the other lady had bowel problems.

There was only one nurse who had to cover the whole ward of around 15 patients with a wide range of medical problems. The rest of the staff on the ward were care assistants and some of these had problems just doing the basic OBS.

This was last summer, pre-covid.

RosieA profile image
RosieA in reply to Boudica1

I am so sorry to hear all that. Sadly the more we are in hospitals as visitors or patients we can witness the very best and the worst.

Boudica1 profile image
Boudica1 in reply to RosieA

I must admit the whole experience was a nightmare and weeks later if I talked about it I would end up in tiers.

♥️

happytulip profile image
happytulip in reply to Boudica1

If there was only one nurse to 15 patients that's illegal practice. There is a certain amount of trained staff to ratio of patients that is required. Very worrying.

Boudica1 profile image
Boudica1 in reply to happytulip

I've no idea what the nurse patient ratio was but there was only one nurse on the ward for all of us and some of the patients had what I would have thought serious/complex conditions.

Plus in the bay area I was in she didn't even enter, we were all delt with by a allocated care assistants.

The one I got had problems with doing the basic OBS and three times couldn't get the readings for BP and temperature on the right side so decided to try the left side and again had to try three more times for each and then entered her results on the chart but I was in too much pain to get out of bed to see what she had written. I had asked for more pain relief because of the pain and that I didn't think the paracetamol was strong enough but was told that I had to wait for another 45 minutes for the next dose. One and a half hours later the patient who was admitted to the bed next to me had to go and ask for the pain medication for me. That's when they realised that they had forgotten to give me the main painkiller and the paracetamol they were giving me was just the top up, no wonder I was in agony after having a gallbladder removed.

When the strong painkiller started to work I got dressed and left, I really couldn't take anymore and thought I'd be better off at home where I have strong painkillers and at least I wouldn't forget to take them.

I didn't like hospital's before after that experience I would have to be unconscious to stay in. I know I should have reported it to PALS but I was that upset everytime I thought of the experience I would burst into tears well sort of as I have Sjogren's I don't have tears just pain if I cry.

Anyway that's last year and history now and I have learned to run no matter what the problem is if they mention being an in patient again.

Maybe it was just a blip because of staff shortage I've no idea but never ever again will I be in that situation.

♥️

suzannah16 profile image
suzannah16

I am told there are very few cv19 patients in my area needing hospital treatment yet I have only had one renal phone call since march. nothing from rheumatology and my GP is doing emergencies only, whatever that means. I couldn't even get a GP phone call if needed. I would just like to know what all the doctors in this area are actually doing.

Boudica1 profile image
Boudica1 in reply to suzannah16

There are only a few in our area as well and it covers the entire city and surrounding towns and villages.

The only thing I've had from Rheumy was a text video about their criteria for shielding and nothing else.

Dermatologist who I usually see every 3 months, the two phone consultations I had must have been like working blindfolded. At least the next appointment is face to face so that he can actually see what's going on and examine it.

Everyone else has disappeared from the face of the earth.

I know that they are/have been working really hard and playing catch up is going to be harder.

Had to phone GP surgery this morning as I had a very strange night breathing wise and feeling dizzy not the usual lung symptoms. Then this morning pain in the side of the waist and said that I have a UTI, they wanted a sample so I reminded her that everytime they test the urine it has a very high hematuria content and I end up on the merry go round of scans and they have never found any kidney stones so I feel it's a waste of time and valuable NHS resources. So it's antibiotics and fingers crossed.

♥️

suzannah16 profile image
suzannah16 in reply to Boudica1

I had kidney stones, took nearly six months of "surgeries" to get rid of them. in and out of hospital every 2 weeks for them to have another go at zapping them with a laser. I ended up with one defunct kidney [which I only found out about when I had a scan] and one kidney working at reduced rate.

I would love to think the doctors here are busy with covid but if there isn't any [or so i'm told by my pharmacy] what are they doctors doing?

Boudica1 profile image
Boudica1 in reply to suzannah16

I've got no idea what doctors are doing. Maybe it's a work to rule due to this pension fund business. I do remember through the brain fog something about doctors at hospitals only working at 50 percent of hours for some reason. But I really can't remember what it was about.

♥️

Boudica1 profile image
Boudica1

I think it's something about their hours and pensions but please don't quote me as what with one thing and another the old brain fog is worse than normal.

What I do know is I had to phone the surgery today and got a phone call back from the practice nurse and not even a doctor who doesn't know me or some of my medical history.

Seems like I had to diagnose the issue so I have been prescribed antibiotics.

Fingers crossed. Hahaha

♥️

happytulip profile image
happytulip

You'd have to ask Public Health England because they are the ones dictating the rules about telephone consultations.

I still in hospital and the doctors and nurses are working their backsides off. They don't want to do telephone consultations because they are concerned about missing something.

I am supposed to be reviewed by Immunology on 10th, its been a planned review for months and I need to see them in relation to this admission. Will they come to the ward to see me?? Nope! Not allowed. I'll get a phone call instead even though they will be in the same building! Its madness.

The doctors just want to be doctors but it is the bigwigs that are making these decisions.

In my opinion, the real responsibility lies with those who are going out and flouting the rules and encouraging the virus to spread. Raves, foreign travel, house parties. The longer these go on, the longer we won't get the appropriate care. Did all those tourists really need to go abroad this year? Yes, it's been a difficult year but many people are still shielding themselves to a degree and haven't really left home much, let alone the country! Just my opinion. X

Boudica1 profile image
Boudica1

It's very frustrating not being able to get a face to face appointment but as I'm one of the high risk group I can understand it in a way but there must be a round it some how.

I was put in the Shielding group because of the multiple lung problems and Arrythmias I have so not having to sit in a crowded waiting room with god knows what is a relief. But they didn't think of that before, I had no choice if I needed to see a doctor I had to take the risks of catching a chest infection.

Now suddenly it's for my own protection?

Helloooo, they weren't bothered about me catching a chest infections from people in the waiting room coughing and sneezing and my having to run the risk of catching whatever and ending up seriously ill and in hospital before.

♥️

Barnclown profile image
Barnclown

🤩👍👏👏👏👏👏

Boudica1 profile image
Boudica1

Both of those sound like my surgery plus last month alone I had to phone the surgery twice both time put on a holding line/service for press 1 for, 2 for etc before then going onto a waiting hold for the service I needed. These two phone calls alone cost me over £10 so it's not only stressful trying to get to talk to reception staff to let the surgery know you need help/treatment but the phone companies are making a fortune in the process of us the patients having to try and access our GPs.

Last week I again had to phone the surgery with the same stressful system and this time got the practice nurse phoning me back and issuing me a prescription. It's a good thing that I'm honest I could have told her anything and got something stronger than antibiotic's.

x

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