Telephone Consultations: Just wondering how you’re... - MPN Voice

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Telephone Consultations

mhos61
mhos61

Just wondering how you’re all doing with tele-consultations? I’m currently waiting for mine.

In particular, I would like to ask about the time slot you’ve been given. My original ‘face to face’ appointment was for 9.30am. This was changed to a telephone consultation (which I don’t mind), however, the time slot I’ve been given is a four hour window between 9.00 - 1.00pm!

Is this the same for others?

68 Replies
oldestnewest

Hello Mary,

Hope you are keeping well. I had my telephone consultation a couple of weeks ago. They gave me a specific time (10:30) but with a 2hr window either side! As it happens the call came almost exactly at 10:30.

In practice though, I don't find the consultations very useful, other than for finding out the FBC results. They rarely last for 5 minutes and the docs are not interested in QOL issues at all. But then that's the same with face to face consultations too, and at least I don't waste time travelling or sitting in waiting rooms.

Take care

John

mhos61
mhos61 in reply to Ovingite

Hi John,

I’m good thanks, hope you are too?

I agree with what you say. I’m quite happy to have tele consultations for now, even though today’s was a disaster (see below). I’ve often thought at my ‘face to face’ consultations, well that could have been done over the phone!

I see the CNS all of the time. I do think the Consultant should see their patients at least once a year.

Mary x

I am always given an exact time in 15 minute slots - the calls are seldom early but never more than 10 or 15 minutes late.

The trouble with 'phone consultations is that if you forget something, you can't turn round on the way out of the door and say "Oh I nearly forgot, I'll need a prescription......." You've already hung up!

Andy

Andy, I’m glad you mentioned prescriptions, thanks. I hadn’t written that down.

Hi, I am due to have bloods done on the 16th Sep was supposed to of just have them done, then telephone conversation that day at home, but have just received a letter to say that I am to have a face to face conversation and to make sure that I wear a mask which I would anyway. I suppose it’s because my platelets have started rising in the last two bloods taken since March. But I do think stress has a lot to do with it, so hopefully I will get some answers, or could be to do with the fact that Bromley is averaging 4 diagnosis of Covid a day, when in June and July there were none.

But good to be able to see my Haematologist again.

Jean

mhos61
mhos61 in reply to Superwoman

Hope your daughter is doing ok Jean, and you too of course.

As you say, your platelets maybe responding to the enormous stress in your life at the moment. It’s good your haematologist has called you in for a ‘face to face’ wouldn’t expect anything less when there are changes.

Mary x

Interesting how different things are. Here in Germany face to face with doctors never really stopped even during lockdown. I have always felt safe as it’s well managed never crowded. My haematologist is based in an Oncology clinic. For me personally I think the odd telephone or zoom is naturally understandable but should never become a long term solution as patients will miss out

Mostew
Mostew in reply to Dovme

‘Oh to be in England now that Spring is here ‘!!!!!! We don’t do to well do we !!!!

Dovme
Dovme in reply to Mostew

I think the UK has amazing doctors and great information services. I am just surprised and concerned that patients miss out by not seeing doctors face to face. Fingers crossed it gets easier

Smomo
Smomo in reply to Dovme

I think trouble is they haven't got the time. Info services are great and nurses seem to be more empathetic in my experience

mhos61
mhos61 in reply to Dovme

How lucky you are.

Hi Mary,

Long time no speak! I hope you are all keeping well? I will e mail you soon.

As you know, I have been on telephone consults since June 2019. I was always given a day and, anytime after 1.30. However, for the last couple I have been given a specific time in the morning and they have usually been on time. I’m sure I was always tagged onto the end of clinics and now they are not seeing so many in person I have a specific slot. I think it’s even more important to write down questions as Andy says you are more likely to forget when on the phone.

Love Judy xx

mhos61
mhos61 in reply to piggie50

Hi Judy, sounds like it’s working for you. Obviously, under the current circumstances it’s ideal, but I wonder how long it will be like this for.

Yes, it’s been awhile, look forward to hearing from you.

Mary xx🤗

I've had 2 telephone consults. I initially thought it would be at the same time as face to face appointments, but they just ring any time on the day. Luckily they've managed to catch me in. I have as much time as I need. Tell me how my bloods are doing and always ask if i have any questions. Never rushed. Even though it's ok, i still feel more comfortable face to face. Next one is supposed to be face to face in November, but the last 2 should have been. We'll have to wait and see what happens.

mhos61
mhos61 in reply to mark382

To some extent I have time too. Not ideal though for people in employment.

Thanks all!

Well, what a day. I waited over four hours...no call😡

Left a curt message on their answerphone with my phone number (just as well), and then had to go out. CNS phoned whilst I was out and spoke with hubby. Apparently, they had my old telephone number 🙄. Strange, had this number 11 years and been under the hospital for five years🤔

Anyway, just spoken with CNS. It’s a good job she didn’t catch me a couple of hours ago, I was livid. Have been promised records will be updated.

All blood counts in range, so happy now.🤗

Mostew
Mostew in reply to mhos61

Same happened to me a while ago. I got a letter saying I hadn’t answered phone when I’d waited hours not daring to do anything in case I missed her .

mhos61
mhos61 in reply to Mostew

That must be so frustrating.

I've had two and both have been to the minute spot on the time given, don't understand if you can have an appointment In hospital for a,specific time why some hospitals cant manage this for phone appointments.

Totally agree.

As above, 2 so far and both were to the minute. Got another next week and it's timed to start at 11:36. Not 11:30, not 11:35, but 11:36 .

Wow! Are you in the UK?

Hi mhos61,

I’ve had telephone consultations every 6 weeks over the covid period. In the beginning the apt’s ran 1-2 hrs late while other patients got use to not turning up for a face to face. Now they’re generally up to an 1 hour early. Never rushed and they answer my questions and have a chat about how things are going for me. Always asked how many meds I have left. For me it’s been good, but it would be nice to have a face to face.

Pleased it’s working for you. I don’t mind the tele consultation as my condition is stable, it’s just the four hour window slot that is a bit annoying.

Hubby has been having telephone appointments since April & they are working well. GP does bloods & because not the same trust as our hospital they send them over to the secretary a few days before & then we have a specific time slot for call, usually is a bit early but this last time was an hour late. Usually much more engaging than the face to face appointments. Doesn't help when we sit in the consulting room (known in our house as the room of hell) for sometimes over an hour waiting for the consultant to come over from another clinic. I wish they'd keep us in the waiting room until they are ready with their scrap of paper with about 3 blood results scribbled on it. With the phone call they are sat in front of their computer & can look back at results. They are always knowledgeable but I think they have more time to focus on each patient atm. Will probably opt for limited face to face if things get back to normal & stick to the telephone calls as its always a 5-7 hour day for us to go if he then needs a venesection.

mhos61
mhos61 in reply to Chaz1

I totally agree with what you say. At these times we don’t want to be hanging around hospital waiting rooms unnecessarily.

There’s a lot to be said for tele consults. From the answers so far, I think some hospitals are more organised than others with this.

Hi mary, hope your keeping safe and well. Last tele-consult was a joke, was given a time slot of 3.00pm. Had a missed call in the morning at 10.30am while out shopping! I had to phone them back and asked what was happening assuming I was mistaken but was told the consultant decided to phone me early because he didn't have many in clinic that day! He called me back eventually at 5.10pm that day. Wouldn't mind but I seem to encounter this regualarly and i'm now on 6weekly appointment slots instead of every 3 monthly because of problems with platelets and low Hgb. Tina.xx🤗

mhos61
mhos61 in reply to Tico

Hi Tina, nice to hear from you.

My thinking with these tele consults is to be given a specific appointment time with an acceptable half hour each side of that appointment. I’d be fine with that.

Sorry to hear that you have had changes in your bloods. This is when tele consults may get tricky, but with Covid it’s understandable why it has to be done this way. I see a forum member has been offered video consults. I think this is the way to go.

Have you been offered any different treatment Tina?

Tico
Tico in reply to mhos61

I was offered video appointments several times but refused them, don't like this virtual stuff and insisted on telephone appointments instead. As for treatment i 'm still on Hydrea but I told him I was not happy being on the higher dose he'd put me on when platelets shot up to around the 700 mark several months previously. In the 6 weeks weeks since i'd seen him i'd been in hospital for 4-5 days with a chest infection and very low sodium which they attributed to the Hydrea and stopped it completely while I was in there. When I came out I went back to taking the dose I was previously on before he'd highered it which was 3 a day, 7 days weekly. Unbelievably he wanted me to remain on 4- 3 on alternative days even though my platelets had nose dived to 135! He said he still thought that was the right dose for me. I disagreed and told him to look at my history of big highs then lows and he agreed and told me to take only 3 daily. Up for my bloods again on the 16th then tele-consult. Be glad to get back on the 3 monthly consultations. Stay safe.Tina.xx🤗

mhos61
mhos61 in reply to Tico

You’ve been through the mill a bit then Tina. Hope things go well with the next appointment.

From what I remember your platelets seem to be unpredictable with big swings. It must be even hard for your haematologist to monitor and treat you accordingly. Have you considered or even been offered Pegasys? It maybe time for a change.

Xx

Tico
Tico in reply to mhos61

Myself and haemo have spoke in the past briefly about it, i'm not to keen because of the side effects i've heard about. I think sometimes its better the devil you know..Tina.xx🤗

mhos61
mhos61 in reply to Tico

It could be a game changer too though. I’m one to talk, as I’d probably be cautious too. I wouldn’t rule it out, your quality of life may greatly improve. Food for thought Tina! Xx

I have had one face to face and 2 telephone appointments over lockdown. The telephone consultations have been great. I have my bloods taken at my GP a few days before and just chat through the result with my Haematologist. He hasn’t called on my actual appointment time so I know to ring fence some time around it but it sure beats waiting around in a a hospital. Usually I’m in Hospital for about 4hrs between having bloods taken, waiting for them to be processed, being weighed and seeing my Doctor.

I think if I was a new patient or not stable I probably would prefer to see my Doctor face to face but in my current situation it works really well.

DoubleF79
DoubleF79 in reply to JojoWonder

Hi. We’re about the same age with same mutation. How are you coping with it? Have you known for long? I found out with routine bloods for my kidneys last Nov x

JojoWonder
JojoWonder in reply to DoubleF79

Hello, I’ll direct message you do not to hijack this conversation. Thank you for connecting. I’ll be in touch soon x

mhos61
mhos61 in reply to JojoWonder

I agree, it does beat waiting around a hospital for four hours.

My appointments at hospital always ran on time, so I have gone the opposite now with a four hour time slot, but still prefer this under the current climate.

Hello. I even did not receive a time slot. The doctor even called thé day after. I hate the whole concept.

mhos61
mhos61 in reply to lhasedoglover

Sorry to hear this, was there an explanation?

I don't have telephone appointments, my consultant does video appointments. They sent me the link back in April and it works really well - I've had two consultations so far and another due at the end of September. I go to my GP's the week before for my blood test.

I log in to the video consultation at 9am, go into a virtual waiting room and within 15 minutes they're there. They can see that I'm there and waiting.

It's so much easier for me as I don't drive. A 9am face-to-face appointment meant that I used to have to leave home at 7am, then catch two buses. I rarely got home before 2pm and as I'm self-employed, time = lost money.

I'm actually hoping that they keep this system going for me after Covid, as it's so much easier.

Perhaps for those not happy with telephone consultations, ask if your Haematology Dept offers video appointments instead. :)

mhos61
mhos61 in reply to Kari1961

Hi Kari1961. Sounds like your hospital is forward thinking.

Hi. I had mine yesterday and it was an hour early. I have no issues doing it this way as my doc is great & happy for me to ask loads of questions.

I had a funny result & 2 sets of bloods were taken (one for haem & one for renal) and platelets we’re 1360 & 1500-something so they’re getting redone & another call in 4 weeks.

I’m only 40 with CAL-R mutation so relatively young. Obviously it’s a worry but trying not to panic until I get next lot of results back. Fiona x

mhos61
mhos61 in reply to DoubleF79

Glad to hear it’s working for you Fiona. Your hospital sounds like they’re doing a good job looking after you.

Good luck

Hi, I was given a time but that went and they said they couldn't get through? Dont know about you but I am on edge until these have taken place. I had a different Consultant to usual as he is more part time and was asked many questions like how long had I been taking the particular dosage of Hydrea which I was totally unprepared for - on the whole it was ok but didn't like it as much as face to face, felt put on the hook rather than feeling it was a useful time, but as Ovingite says at least it saved me a journey - 32 miles - so there are some good points. Hope it goes well.

mhos61
mhos61 in reply to Jennytheb

Yes, the upside to all of this is no travel and waiting around, also no exposing ourselves to potential Covid infection.

I don’t feel on edge. I speak with the CNS who is knowledgeable and answers any questions I remember to have ready🤔

Had one telephone appointment during lockdown which was rushed. Went to hospital two weeks ago was not in there 5 mins rushed again. No usual weight or BP checked. Was told next appointment would come in post.

It arrived. A telephone appointment between the hours of 1.00pm & 6.00pm in November.

mhos61
mhos61 in reply to Snagglepus

That sounds unacceptable. We should never feel rushed.

I thought my four hour slot was bad. I can ‘hang around’ for a call, but for those with work commitments etc it must be frustrating.

Had my first phone consult a few weeks ago. It was scheduled for 3pm and the doc ended Up calling at 5:30pm. Personally I would rather talk in person I feel seeing someone in person allows them to have a better chance at doing a complete assessment. I do understand why this is easier for doctors due to COVID and how it is safer for us as patients but still prefer in person.

mhos61
mhos61 in reply to IrishHiker

Thanks and totally agree

Hi. I have had 2 telephone appointments with my consultant during lockdown and one with nurse. All with given appointment time and all received within 5 mins of time slot. I go and have blood tests 3 days before, so results available. Seems to have worked well for me, altho I have had to write questions down beforehand so I dont forget! 🙄 but then I do that with face to face appointments too lol. My next appointment is on 10th but that is face to face as I have to sign consent to start Peginterferon 🙁. All the best. Tina

It would seem some hospitals have got their act together a bit more than others to me.

Recently I’ve had a couple on the dot, one surprisingly early and one quite late. In general they’re on time - I took half of mine on the phone even before the pandemic. I prefer it that way because there could be long waits at the clinic - although nice to have a face to face every now and then for reassurance

I think that sums it up really Tim!

GP tele-appointments within 20 minutes either way and hospital appointments are as normal.

Mostew
Mostew in reply to MaggieSylvie

Not always !!!

Well, as my appointments are few and far between I can't speak for "always".

Hi. Yes, nothing but telephone appointments for me the last 6 months. But given a specific time. I suppose it depends where you live. I’m in Sussex, UK. Wonder if we’ll ever see get to see a doctor face to face ever again!!! Good luck

I've had two telephone consultations which haave gone quite well. Then my medication has been delivered, last time I said I'd collect it as we were going to the caravan, it was a good job I did as it was the wrong drugs! Fortunately I looked in the bag before I left the hospital.

I prefer the telephone consultation as, in their wisdom, someone at the hospital has decided to move part of the haematology clinic to the middle of a ward! You have to gain access to the ward (easier said than done) then pass by patients who are in bed waiting for or recovering from operations, (nothing to do with haematology) until you come to the bay that is being used as a reception, then the next bay is a waiting area and the doctors office is a side ward - you couldn't make it up! I think it is safer for haematology patients and the ward patients if telephone consultations continue.

Ooh Lizzie!

I can see why you’re happy with tele consultations. Doesn’t inspire you, does it?

I would have to say that I probably prefer the phone consultation over travelling to hospital and sitting in an overcrowded waiting room for at least an hour and a half because they are ALWAYS running late. A video call may be better??? My bloods seem stable at the moment but I do think actually seeing your consultant face to face occasionally has a re-assuring feeling.

The one thing I would say is that it is always a hurried call and you must be prepared and have your questions written down and like a lot of people have said....never on time. I am working from home so can live with that but I do think the call should be made on time.

C

I have done quite a few tele-med appointments. They were all at specific times. Docs tended to be more on-time with these appointment than face-to-face. I would note that these have all been tele-video appointments. When doing tele-medicine, a tele-video platform is vastly superior to a telephone call. Very close to being there in person. Given how easy it is to set this up, I do not understand why any medical practice would fail to offer it.

Had 2 telephone appointments now - 1st was bang on time the 2nd was 2hrs early just a good job I'm currently working from home or I would have missed it. At least it saves me a 1½ - 2hr round journey to the hospital.

I'm joining this post a bit late but I wonder if anyone else is worried their spleen isn't being checked? Until lockdown mine was measured by examination each appointment - I'm on rux which shrank it satisfactorily. However its been checked at nearly every appt for 30 years! Weight also always done but I do that once a week at home.

Otherwise phone consultations fine. I write down queries and check my supply of drugs. I don't get given a slot but both times have been phoned the day before my booked hospital appt - they seem to be sending them out ( optimistically?) still at my hospital. Have bloods done at GP a couple of days before. When shielding practice nurse insisted on coming to house. I'm retired so just stay in but I can see if you're working this would not be great.

Hi DJK12.

I understand your genuine concern about not having your spleen monitored. It may be worth putting a post up yourself in relation to this. As you mentioned, you have joined this conversation late and members may well have missed your post. Some members may have similar concerns.

Good luck

DJK12
DJK12 in reply to mhos61

I presume our consultants did a risk assessment that on balance it was safer to keep us out of clinics and do only telephone consultations - presumably they would have seen us if we reported a sudden obvious enlargement? Anyhow I'm going to ask at next telephone consultation when we'll next be seen in clinic as I think it's too long. I'm finally having a venesection to try and decrease my ferritin levels from over transfusion. This was delayed from March so perhaps some chance of more normality. I thought I could ask the doctor there but they are being done at a community hospital, not my usual teaching hospital, and the letter says 'no doctors in attendance' !!!

Yes I’m the same I have one next week

DJK12

I have ET and luckily I am stable, so for now tele-consults are ok for me, however, I don’t think it’s ideal in the long term for those with more complex disease.

I do hope your quality of life improves with the upcoming venesection.

DJK12
DJK12 in reply to mhos61

Thank you!

I've had a number of phone consultations now since lockdown started at varying intervals depending on the state of my blood counts and current treatment. I'm always given a specific date and time as if it was an in-person appointment although the consultants' timekeeping is poor. So far calls have varied from 15 mins early to 45 mins late and other points in between. I always have plenty of time though to discuss things (up to half an hour so far) but annoyingly I never know which consultant is going to phone (which would probably be the case with in-person visits as well). I must have worked my way through the whole team by now although thankfully they do read my notes before calling. It is vital to be prepared with any questions and I now have agreement that I can email questions a few days beforehand via the CNS. I strongly believe it's in the patient's interest to actively manage the process as far as possible. I have no problem with phone discussions compared to in-person visits and it saves me a journey of at least 45mins each way to the hospital for each consultation (as John comments). Blood tests are done separately more locally a few days before each consultation.

Paul

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