Another dermatologist phone consultation. - LUPUS UK

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Another dermatologist phone consultation.

Boudica1 profile image

Well had a second phone consultation with the dermatologist which was even more of a disastrous waste of time than the first one. How on earth can any doctor do their job? Questions and answers are the only thing that they have to work with, they are totally working in the dark.

All that seems to be happening at the moment is constantly going round in circles and being passed on from one doctor to another and another and ending up back at the same starting place. Totally frustrating and unhelpful to be on this stupid merry go round.

I've got to the point of seriously thinking of stopping the meds they keep prescribing even though they repeatedly tell me that everything is normal. If that's the case why are they prescribing drug's?

At the moment all the doctors at the hospital say is go to GP and get a referral and GP says no go back to such and such doctor at hospital and they can sort it out.

😵👿👿👿

18 Replies

I hear you Boudica, you like many are stuck on the dizzying merry-go-round of non-exisitent outpatient care.

We went into lockdown so hard and fast that we emptied loads of elerly and vulnerable patients into care homes without testing, look where that got us.

Now coming out of lockdown there is a backlog of patients who desperately need to see their Consultant or team but can't as they are deemed to vulnerable to visit the hospital. Yet when does the risk of not going to the hospital outweigh the risk of going? Also, my Consultant is now busy on Covid research. Where is my care?

I know that I am waiting for a battery of tests, all agreed over the phone but I've been told it may be aug 2021 before I get seen. Are you kidding me?

The NHS constantly trains for a major Incident. There should be a plan for a pandemic. Goodness knows the chief executives are paid a vulgar amount of money to ensure such measures are in place.

Yet, I like you and many others are being left to suffer while they try and sort it out. And because it's something that doesn't meet the "usual" two week cancer pathway, I suspect that we may be in the dark for some time.

Sorry, if this sounds like a political rant. It's not, it's just a factual account of my care during covid. I say "during" because it's still going on, which is important to remember because it's seems that some people have forgotten that, especially in the media.

I hope you get some help soon Boudica.

Boudica1 profile image
Boudica1 in reply to happytulip

I totally understand what you are saying and indeed it's not political in any way shape or form. They the hospitals have already stated that there is a back log of patients waiting to be seen and it's not just the poor Cancer patient's who have had their treatment put on hold either but all the other's such as heart, lungs and heaven knows what else who were already either in the middle of treatment or waiting for treatment to start and being joined be even more coming onto the list's just to see a consultant.

I know they were swamped by the covid 19 patients and were also protecting their staff.

But there are others who are suffering and could well loose their lives because they can't access the doctor's and correct treatment they need and now those of us who have been shielding are expected to go out in the world again and back to work but who still can't access their consultants properly and are now facing even longer waiting time's.

Yes they did do a pandemic assessment some year's ago when the SARS virus first raised it head and seem to have promptly dismissed it's findings, Ha, covid 19 is a newer strain of SARS show how clever the bigwigs are (not). So they found themselves in the mess of not enough PPE and mayhem but it's the public who are the ones suffering just so they can pat themselves on the back and say well we did have some PPE but its not our fault we didn't have quite enough but we also saved money. It will be interesting to see what will happen with the call for an earlier Flu jab this year which is also supposed to include the over fifties (?). Plus how this new strain of flu that they have identified in China from their pig's.

Anyway seem to be very tired again today and my face and one eye hurts for some reason but at least its not my chest or stomach playing up for whatever reason.

Hope you aren't feeling too bad at the moment, I'm off to have a nap and maybe find my much lost sense of humour.

X

happytulip profile image
happytulip in reply to Boudica1

Enjoy. I'm already resting on my bed and I think my sense of humour has gone AWOL for a rather long time at the moment. But in many ways it's good to know I'm not alone.

Boudica1 profile image
Boudica1 in reply to happytulip

Yes in a strange way it's good to know someone else is having similar problems. But I really wouldn't wish it on anyone.

Take care.

X

happytulip profile image
happytulip in reply to Boudica1

You too.

Hi Boudica1,

Thanks for posting.

Sorry to hear about your dreadful phone conversations/consultations experience with various dermatologists, GPs etc😩.

It seems obvious that complex skin lesions associated with lupus must be actually seen by the specialist.

I personally do not have a smartphone but video link (second best) where photos can be examined close up and in high definition is the only way with lockdown to replace face to face?

I would expect with continual easing of lockdown dermatology departments should be doing more face to face examinations but they seem to be fobbing us all?!

How can a medic seriously diagnose and treat a complex skin worry or lesion by just “talk”?🤔

Dermatologists are not call centre helpline operatives they should be examining patients properly by looking and diagnosing skin lesions of their patients.

I feel your experiences require a formal complaint if they do not provide a better service.

We deserve better as patients. GPs are not dermatologists? I share your anger.

Regards

Xx

in reply to

Read today with a heavy heart, see i newspaper, p7, July 31st 2020 “ that all consultations with doctors should now be by phone or video link rather than face-to-face!

“, Matt Hancock.

One wonders with covid lockdown what GPs will be doing for lupus sufferers and many others suffering with complex AI diseases? They are paid enough by the NHS for face to face consultations albeit 10 minutes/patient😢🤔

Boudica1 profile image
Boudica1 in reply to

Yes I've seen it too. My thoughts that are printable are, says someone who doesn't have a life long health problem, who doesn't have multiple symptoms and definitely nothing that needs to be seen in person.

But then those who are healthy and well really don't know do they. Even my GP has said to me that I actually look well and if she didn't know what my health problems were she would not understand or realise that unless I'm unconscious or unresponsive she would not have a clue. It doesn't help either that most of us who have life long diseases get used to things and adjust to our normal. Is it part of our coping skills after all you can't give up can you so you carry on "as normal".

I really don't think that phone consultation is the way to go for the majority of of patients and I may be wrong but it spacks of cost cutting and more importantly trying to speed up catching up with the backlog caused by Covid19.

I may well be wrong but it how I see it. At least the next appointment with the dermatologist is a face to face one although the face mask business especially for me is going to be a bridge to cross as I'm exempt from wearing them due to multiple lung diseases. I have been trying though and not only did I really struggle but have ended up with a very bad Sinusitis which has spread to the inner ear and threatening to go to the lungs. Now I'm not only on all the inhalers including extra steroid inhaler but now steroid nasal spray and yet another course of Prednisolone. Not a happy bunny 🐰.

♥️

Omg I know what it’s like as I am in that position too. The only thing that’s helped us writing to each department and asking for a final appointment and putting in every symptom with photos and a diary and asking to discharged from hospital. I wrote a four page letter to everyone stating there’s nothing more than can be done and it’s not necessary to continue. I did this after years of going round in circles with hope in my heart that someone could help me. I almost had a nervous breakdown with the stress. I even wrote a letter to my drs it was a masterpiece I put in how I had saw so many people who say I am ok yet my symptoms still persist. Now I am quite ill and am too unwell to attend the surgery so I thought they may as well read my letter so they can document everything. How I could only get a ten minute appointment with them and how I can only bring up one symptom at a time. Well I have literally hundreds on a daily basis so I asked their advice I put in that I cant take anymore procedures, appointments nor to see any more specialists. I told them I had wrote to everyone and put in requests to be taken off the lists as I accepted no more could be done. The next thing I know a dr who I have never spoken to before rang me spoke to me for over an hour and admitted that maybe they was missing something. I nearly keeled over in shock. It has taken hundreds of symptoms and me getting so ill for them to finally realise there could be a reason for that. He advised me that once off the list with the rheumatologist to go see him and they will refer me to another for a second opinion as nothing can be done whilst with the same one. Mines useless after 3 long years with him I give up. If no one is helping maybe just get rid of every single one including the drs who won’t listen. Perhaps try another drs surgery unless you could see another dr at your present surgery who could help. I have kept diaries, taken photos, have been dismissed a thousand times over. You could pay privately to see a GP I did it cost me £90 for half an hour and she was so good got me a referral listened to me etc. If no one listens then they have to go as they cannot or will not help you. I read your post with sadness as I realise not just you and me but so many more are getting fobbed off every where. Get all your medical records from everyone I did and found information in there that they kept from me. I even went to see a dietician and she mentioned my GERD was causing me problems. I said Oh the gerd just remind me when was I diagnosed. She replied I think it 2014 it’s in your notes. It was news to me as I was never told. There is a way you just have to take a break get your records ask to be re referred and make sure you don’t go back to the same person as my second Referal for a dietitian sent me back to the one I had just finished with and I was in and out in just over 6 minutes i timed it and It was a different hospital but the same woman I just shook my head and gave up. It’s all about finding the right person who can help you. My friend works in an hospital and she told me that drs and specialists have to slow down appointments and not diagnose people or the government will have to pay a lot of money in disability payments as there are so many people that’s ill. I wish you luck don’t give up just try another way. Let us know how you get on. Try the letters it’s working for me as now I feel I am getting somewhere. It’s sad it has to be like this. Take care and have a nice day. J

in reply to

Read today with a heavy heart, see i newspaper, p7, July 31st 2020 “ that all consultations with doctors should now be by phone or video link rather than face-to-face!

“, Matt Hancock.

One wonders with covid lockdown what GPs will be doing for lupus sufferers and many others suffering with complex AI diseases? They are paid enough by the NHS for face to face consultations albeit 10 minutes/patient😢🤔

in reply to

It’s a joke as I had a conversation today with a lady who son is a dr in a London hospital and she told me he’s on the covid ward and when it all started he and 11 other drs was assigned to the wards with only 3 patients who needed treatment then off home went the patients. My elderly friend who is unwell has had numerous Tele appointments as I too have yet it’s just the tip of the iceberg this is not a way to treat patients as I thought a telephone consultation was all about assessing your medical needs then getting you the right dr who can actually help. What’s going to happen is drs are going to miss out on vital symptoms and people will be left to struggle all alone, self medicating or left to get very ill or die. Only when you present with serious symptoms will they do something. Simply shocking god help us all. I am still waiting for my final rheumatologists appointment by Tele plus I have another three recent vital appointments just put in place within the last month yet again on the phone waiting for me. Hope you manage to get better care as I feel we will have another lockdown but we shall see. Have a lovely evening and I am researching how to get better care. If I find anything that helps I will let you know. Take care. J. xx

Boudica1 profile image
Boudica1 in reply to

It doesn't bode well for people with life long health problems does it.

I think it's more of a way to try and speed things up dealing with the backlog of patients who are not only those who have to be seen regularly in outpatients but all those who are new referrals as well. Not a good place to be at all.

in reply to Boudica1

I totally agree with what your saying. Sadly there are too many of us that are unwell and so few appointments and when you get to see someone your not always believed or treated well. I really feel for many on this site when I read the posts and hear the suffering of patients. Roll on better times for us all. Maybe one day somehow it will all change for the better. xx. J.

100%. On Thursday, I had this arguement with a consultant on Thursday who phone ttally unannounced and wanted a phone consultation. This is the second time he has done this. The first time was April 30th and was the very first "consultation" with him. Useless. He also said he would phone in 3 weeks' time. He phone unannounced on Thursday, July 2nd. If it was 24hours earlier I would've been at the opticians. Could I, or anyone, just drive to the hospital and say they are there to speak with a consultant unannounced? No. So why is it acceptable the other way. Like consultants prepare for appts (or should!), so does the patient.

When I pointed out his failure at phoning over two months later and not 3 weeks later, instead of being professional, he laughed. Yes, he laughed. And it wasn't a nervous laugh either, that was further into the conversation. The phone call lead to yet another complaint to PALS (that is the sixth complaint to PALS in 12 months!) and I have a further complaint with the Welsh Umbudsman. Yet again, it was Glan Clwyd Hospital. Complete and utter failures. Death trap of a hospital. All management and admin focus, no focus on frontline and patient care. So it is surprising to see such huge admin failures.

He's an ENT consultant, have never seen him in person, so completely pointless over the phone. I demanded to be seen in person. He eventually said he will book it for a 'couple of weeks time', so I expect it won't be until September. I have also said a manager must be present as he cannot be trusted to acted appropriately and professionally and also asked for a second opinion and that the person does not see his notes. In North Wales, healthcare "professionals" have to be babysat - much like a lot of public sector workers.

Oh and on Friday, July 3rd, I was told I should've been sheilding from Day 1. Really!? I never knew! Because I didn't mention that from the word 'go'. When neutropenia and neutrophil is below 1.0, you should be sheilding. Mine is between 0.5 and 0.9. Couple that with newly diagnosed SLE that is completely untreated and unmonitored. And so many wonder why I don't trust anyone in the medical field.....

Hi Ceri, oh dear what on earth are they doing phoning out of the blue like that. As you say you could have been anywhere and missed the call and how on earth can he discuss things with you if he's never even physically examined you in the first place. At least mine have seen me before this virus put a stop to outpatient app's but obviously my dermatologist can't see or examine what's going on with my skin. At least he's still sticking to the three monthly appointments and this time I managed to say more even though he was trying to cut in but I was addiment to have my say this time. I wondered afterwards if I'd come across a bit rude but it's so annoying when you're trying to say something and they cut in and it can seem as if they are not really listening to what you have to say or ask and have an agenda of their own that they want to follow.

Things aren't helped with all the different blood tests they keep doing and repeating and if asked about them you are brushed aside and told everything is normal. Really? I have to phone the secretaries to ask for copies of the blood results and they are by no way "normal", I have no idea what any of the results mean or are pointing to but I do know some of the repeat tests are ANA and C3&C4 and what they tend to be for.

Another repeating problematic symptom I get are some really heavy palpitations, the smaller ones I can handle and distract myself from but some are dam right "uncomfortable" and can make you catch your breath. I had a GP 24 hour heart monitor last year which picked up SVT's, Cuplets and something else so was refered to hospital. There the junior doctor almost laughed because it was not a hospital one and told me there was nothing wrong but but still prescribed Calcium Channel Blockers and sent me back to GP. The Channel Blockers caused me all sorts of problems and when I got to see a GP she was horrified that I had been put on such a high dose and the problems it was causing but that the docanctor hadn't even done the Echocardiogram that they wanted me to have. Roll forward to this year and the heavy ones started again so phone GP who said that if it happens again go to the hospital. It did and I went to hospital only to be told if it happens again see my GP and get a referral to the cardiology department. Hold on I've been down this route before and keep ending up back at square one. Then the dermy tells me to see if the GPs can get my Rhuemie to see me in person. ER HELLO! Why can't the hospital doctors contact each other but no it seems that I have to keep going to my GPs and ask them to refer me. My poor GP are at a loss with how I'm being messed about before this lockdown when I was back and forth to GPs after seeing whoever at the hospital they often end up rolling their eyes. Maybe when things sort of get back to normal I might ask the GPs to refer me to a different hospital in another health authority as I've just about lost confidence in this one

X

Wow, I could've written what you have in regards to lack of communication! I thought it was just North Wales "healthboard" BCUHB. It seems not. I get you with the blood tests. I ahve always been refused a copy of the results. Recently changed to a new GP surgery. And they sent me a copy of all blood tests they had on their system to date annd they are sending me the rest next week. Looking at the results I had many questions, due to no rheumatologist - good old BCUHB, IPFR to acces healthcare in England, approveed and it is STLL BCUHB that stopping me accessing the healthcare I desperately need! I also have 15 pages of quesstions in regard to SLE and how it affects me (disgnosed Oct 2019). Have asked a couple of the GPs at this new practice about the results and have had a mixed response, but far better than any I have had to date. I also now have much needed evidence that previously GP surgery were completely wrong on things. I had to fight for nearly 12 months to get B12 inections and when they eventually said yes - purely because a neurologist fromLiverpool Walton Centre has said they are necessary and so much evidence from here that it's necessary - they STILL put up a fight! On the blood results, it says "treat for B12 deficiency if there are neuropathy symptoms". Yes, I have and have done since last July! I already have a complaint with Welsh Umbudsman in regards to this GP practice, this is my definitive evidence. At every point where they checked B12 levels, this is said on the paperwork.

And no, hospitals do not communicate with each other and with each department, let alone with GPs! Following last weeks' disastrous and unannounced "consultation" which didn't happen, I just said pointed out how unprofessional he is. Following that, I submitted yet another PALs complaint. The sixth in less than 12 months. These so called "professionals" have to be baby sat and forced to do work. I have done in excess of £50k wirth of work for GPs, various consultants for various departments, admin, North Wales MEntal Health Team, BCUHB, PALs, MPs and Welsh AM. I have now demanded payment. There has also been total refusal to phone hospital to ask about referrals and health related uestions. Apparently snail mail only. Again, I have demanded phone calls are made and said "I don't care how many calls to takes and who to, get me to the Countess and Manchester for rheumatology and Lupus care. And get in touch with one of the 60(!) "healthbaord" directors to arrrange apyment into my bank account and an update on the PALs complaints which have just gone on a computer, never to be seen ever again.

I have also said I want daily phonecalls from GP for updates on getting me to Countess and MRI (Manchester centre of excellence) - which I have been given different info on how to get into MRI. Which, again, I have demanded is looked into and that I am not doing anymore work for them. As the patient, it should be easy. Get an appt, attend, follow advice and guidance given. But no, you have to do ALL the work yourself.

What you have gone through is utter madness with the same incorrect medication given and given the run around! What is with these so called "professionals"? They might have the degree, but that doesn't mean they can do the job. I also suffer exactly as you describe and am just constantly brushed off. Worse still, neurologist from Liverpool Walton Centre second suggestion on medication for migraines (first was a beta blocker, that kept me awake and worsened heart palpitations), he gave clear instructions to do an ecg before presecribing the medication. A GP at former practive, who was new to the practice, never met me, knew nothing of my history, prescribed the medication over the phone and went totall against the neurologists clear instructions and without carrying out an ecg. Yes, this was in the midst of lockdown in April. He said "no, I'm not doing that It's generally safe" errrrrr, there are instructions from a highly qualified and well respected neurologist from Liverpool Walton Centre! AND there are symptoms. After really struggling with migraines, phoned GP the other week, "Let's see what he's (neurologist) has suggested - ok, we need to get you in for an ecg". Someone that actually spoke sense!

Honestly, head, brick wall.

I would ask GP for copies of all blood tests. It's worth it. They are supposed to give you them and it is your data. Previous GP surgery always refused this, this GP surgery, no questions asked, "yes, I can get them printed and sent to you." Also on the B12 front, as I was due to the next B12, he asked me why I was on B12 injections. I was bewildered and said "because of B12 deficiency..." Dr: "yes, that makes sense" Me: "and with neurologicial symptoms" Dr: "Ah, yes, definitely B12 injections." I was shocked at how easy it was! What the hell is wrong with the previous surgery? There was one decent GP there and she can do so much better than there. The practice manager is the issue.

Sorry for the rant! Definitely ask GP for a copy of all blood test results and definitely be firm. It's the only way to get anywhere. Don't take no for an answer. Any issues, make a complaint and take it to PALS. They shouldn't get away with this and the only way they will learn is if lots of complaints are made, that way (hopefully) changes are made.

Good luck, and I hope you do finally get looked after and get the correct and proper diagnosis and treatment. Palpitations are not nice to deal with, particularly when they are really bad. Be strong. Be firm. You've got this.

Hopefully your new GP surgery keep up with the good work.

I can easily access the blood test results that the GPs order as I have online access to them. It's the hospital doctors ordered blood test results I have to ask for from the consultants secretary's and most of the consultants are the ones that brush things aside.

I've been meaning to try and get the hospital records to look at. Before the lockdown and rarely getting to see my normal GP I could get to see her and ask her questions about the various hospital appointments and tests done and she would have a look at what they have written and discuss them with me. My GP hospital records are linked so both can access the other. Sadly as yet it doesn't seem to work that way for us patients.

Good luck with your future treatment.

♥️

in reply to Boudica1

Read today with a heavy heart, see i newspaper, p7, July 31st 2020 “ that all consultations with doctors should now be by phone or video link rather than face-to-face!

“, Matt Hancock.

One wonders with covid lockdown what GPs will be doing for lupus sufferers and many others suffering with complex AI diseases? They are paid enough by the NHS for face to face consultations albeit 10 minutes/patient😢🤔

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