My Dad has got his upcoming appointment by telephone in 2 weeks, but hasn’t been seen (face to face) by the Haematologist who we see for Dad’s CLL since February 2020, we’ve spoken on the phone twice since then. We are in the UK and tier 4.
Dad has been getting more aches and pains, but I’m worried that he hasn’t physically been seen for nearly a year.
Unfortunately our GP isn’t the most helpful.
Hasn’t anyone had a physical examination recently?
Thank you x
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ButterflyRose
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I have. I`ve seen my haematologist quite a bit over the past 6 months due to starting with AIHA. Telephone appts as well as it was all taken one blood test result at a time. Maybe you need to ask for a face to face appt. Is there a nurse specialist you can contact and speak to?
Hope you can get your dad the help he needs. Take care
Thank you Nanasu. I haven’t asked, but will call this week and hopefully they can offer a face to face appointment in a safe space. Take care and Happy New Year
I haven’t seen a haematologist since Feb either despite being on treatment on a clinical trial. Sadly, ‘phone consults seem to be all many units are doing but contact them in between if there are issues you feel need addressing. Is somebody doing his blood tests? Fortunately I have a good GP who has helped with issues in the interim including the blood tests.
Thank you Newdawn. They request a blood test a week before the appointment. Last time a nurse came home to take the blood test m, but this time they are suggesting Dad goes to the GP surgery next week to have his blood test ahead of the telephone call with the hematologist. I will call this week and hopefully they can clarifyTake care and Happy New Year.
Hi, I haven’t been seen face to face since June and that could have been an error. But I do contact the haematology nurses if I have any queries. Do you have their contact details? Mine is brilliant at coming back to me etc. Hope all goes well
Thank you Walkingtall62. I do have the nurse specialists contact details and had a question for her a few months ago, she responded to the question as if I should have already known the answer and look on the website for info. It made me upset as I now doubt myself when asking questions on if it is “important” enough. Take care and Happy New Year
So sorry the stress of these times had the nurse being short with you! Please don't let one, or even a few, instances inhibit you in asking questions. Sometimes aches & pains are just that, occasionally they are the early signs of a change in our bodies.
Thank you SofiaDeo I totally understand the pressure they face under the current situation, but feeling scared myself for Dad, I just felt some anxiety in who to turn to. Thank you I will for sure be persistent, but patient.Do take care and Happy New Year
Hi, to be honest I think I have had similar types of answers, but I just keep asking the same question and maybe confirm I have asked it before. I have to give a little leeway as everyone in the NHS is soo overstretched. But the stock answer is that you don’t trust the website. Trust your gut reaction. And is this all so new to all of us.?? I haven’t a clue. Thanks goodness for this support group. Take care
I've only been seen after a scan when consultant insisted I come in to see him.Many telephone consultations with a few different consultants about other illnesses I have.
I have a telephone consultation Tuesday with haematologist actually.
I've really struggled to get my GP reception to action a home visit this time since chasing them early December I've repeatedly been told my names on the list of the home visit team (GP actually authorised home visits way back).
I lost the will to chase any more last week and accepted a GP surgery visit the say before my consultation as this was all GP reception would offer!!
Nurses have always been happy to visit me at home numerous times since the Spring but I don't seem to be getting a reply apart from the home visit team have been informed.
I gave a lot of other things going on at present that have dragged on over a year and not one of the consultants in each field want to operate due to covid situation unless it becomes an emergency ie gallstones, blockages from strictures in my bowels due to crohn's etc.
I'm awaiting CT scans and ultrasounds but none are high on list due to pressure hospitals are in around here.
Hi Dave,Thank you for sharing your experiences, I really appreciate it. I wish you the very best for your appointment on Tuesday.
I had to be persistent with our local surgery for a nurse to visit for the blood test in July time as Dad, Mum and I have been shielding and taking extra precautions due to their age.
I’m trying to stay positive and hope you do too with regards to seeing a consultant or haematologist face to face, but also understand the care system is overwhelmed with more immediate/urgent care needs, but I feel and understand your concerns with needing to have CT scans etc as they are needed to monitor the situation.
Last saw my hematologist January 2020- phone consults only since them. Was told to contact them if any changes, and then they’d determine about being seen. But if stable, then phone consults for my foreseeable future.
I did see a specialist for a kidney stone in Feb, but it eventually resolved without having to go back in for surgery and other tests — all of which kept getting postponed due to Covid.
Labs for hematologist have been drawn approx every 3 mos. at a local clinic.
Yes I have too, although I am on the Flair trial. If you are concerned then I would assert yourself and insist on a face to face appointment, otherwise the stress will only increase. It is your right. Good luck
On my last attempt to be seen “face to face” (last time November 2019) I was told I had to be urgent. I’ve had just two phone appointments since and then I had to go to a local hospital for blood test.
I really think we all need a physical check up as how would we know if any new lymph nodes or pains are a sign of CLL worsening.
Let’s hope things turn around once we get over this frightening pandemic.
I've been seen every 4 weeks - but I'm on a clinical trial. However, I was scheduled for a Bone Marrow Biopsy and clinic visit in a couple of weeks, but these have been cancelled and replaced with a phone consult as we have gone into tier 4. I would do as others have suggested and see if you can get hold of someone at the hospital, so that you can at least explain your concerns, and take it from there. Good luck.
Unfortunately the hospitals are pre-occupied with the pandemic and short of staff. I find I am completely dismissed as being non-urgent (which hopefully I am) but the anxiety for me about CLL increases with my apparently slow growing CLL. (WBC 100).
I would be lost without the support of our friends on this site.
I haven't been seen in person by my haematologist since the summer of 2019. However, I'm on W&W, stable, and currently only have an appointment once a year. My summer 2020 appointment was over the telephone. I've had blood tests twice this past year; once in the summer for a battery of immunology-associated tests that the haematologist was able to use, and once in early winter to test for gout (negative; turned out to be paronychia). These were done by my GP, and have allowed ongoing monitoring of my bloods. I would also note that my haematologist and his nursing team were very good about communicating with me to give me some advice when I found myself trapped in Egypt this past spring and summer, with no means of getting back to the UK.
So long as I'm stable and continue on W&W, I have no problem with telephone appointments under current conditions (though I wish the telephone manner was better; my immunologist comes across as much more interested in me as a person than the rotating haematology team). However, I imagine that many of us currently requiring treatment may not be as comfortable with this awkward situation.
I am interested to see you mention paronychia. I was in severe pain affecting my big toe. I was diagnosed after many trips to different doctors and eventually had the toenail surgically removed. The pain was unbelievable. Could this be due to CLL? My gp had never heard of it.
I have conflicting information over whether my paronychia might be CLL-related Hazel. Long before I was diagnosed - going back to my teens - I remember getting small infections at the base of nails, particularly toenails. They tended to occur after I removed a loose piece of skin. They were sometimes painful, but always cleared up quickly after oozing a tiny amount of pus for a couple of days. This recent case, however, involved an abscess that formed at the base of the nail on my right index finger. There was never any discharge. It was incredibly painful as the abscess pressed down on the base of the nail. antibiotics had no impact, and after more than a week of pain my GP arranged for me to visit my local A&E to have it lanced under local anaesthetic. It then slowly healed (is still not fully healed weeks later). So this was far worse than any similar case I'd had before.
I raised this with my immunologist, with whom I coincidentally had an appointment days after the lancing, and she was sceptical over a CLL connection; but the not necessarily trustworthy Dr Google suggests that nasty cases are more likely in people with suppressed immune system.
I'm surprised your GP had never heard of it. Every medical professional I spoke to (including the lovely nurse practitioner who did the lancing) said it was relatively common; bad cases less so, though the nurse said she'd seen worse.
Anyway, if I'm not the only person for whom this has been an issue, perhaps I might start up a separate thread to see if others have been impacted...
I think it’s quite normal. I haven’t seen my haematologist since January 2020. I’m stable and on W&W so why take the risk of travelling to the hospital? I have had two telephone appointments, blood tests arranged through my GP and excellent support using email for any questions I have. I am quite happy with how it’s been handled both by Royal Marsden and my own GP surgery. I suggest sending an email if you have worries. I’m sure the hospital will help.
I too haven't seen a specialist since January 2020. I have had two phone consultations and my next one is this coming Friday. My GP surgery are doing my regular blood tests and they seem to be relying on those results at present.
My last appointment in October was by telephone, booked for 3.30pm but no call from consultant. Apparently he only works in the morning, ( odd because I didn't make the appointment), playing golf in the afternoon I guess. He sent me a copy of the GP letter with an appointment for October 2021, obviously doesn't expect to be going back to work normally this year either. The increase in time between appointments is a good sign, (I think), but he could have too much to do if only working half days. I have 6 monthly contact with the trial nurse, ( by post), to fill in a QoL form. Hopefully I'll get a physical examination at some point in the future. Stay safe, Terry
Terry,I would question that appointment if they are normally shorter. My appointments department seem to have a problem with 12 weeks and 12 months ! And the woman I spoke to was very rude. As I have Ibrutinib on a 12 week cycle of prescriptions I can add up !
I'm due a face to face review on 27th Jan & thus far it hasn't been cancelled or move to a telephone review, although I've been half expecting it might be.
I have though been in & out of hospital 5 times since the beginning of Nov & whilst there have been a few checks etc. it's been a fairly safe experience, so if you feel you dad needs a face to face I'd say talk to the hospital & push for one.
Had my annual review in person in early December - different area of hospital than usual to allow for social distancing. Appointment had been pushed on by a fortnight, hardly a difficulty.
Hello ButterflyRose It is the same in Canada as well. I have not seen the heamatologist since Nov. 2019. May 2020 was by phone and Nov 2020 was cancelled by her with no requisition for bloodwork sent. I did get a letter in the mail saying come again for a phone call in Dec. 2021. My family doctor GP has agreed to continue to monitor my bloodwork every 6 months as my original care plan indicated. It adds to our worry when one feels they are not being properly monitored. I am thankful my GP was willing to continue to keep an eye on the counts. I am in watch and wait.
I have monthly phone consultations with my haematologist and a week before I make an appointment with the phlebotomy department at the hospital. It is an in-and-out visit taking about 5 mins and they keep pretty close to the timed appointment. They have their own entrance so you don't mingle with others. (They've also built a complete new modular buildings wing for Covid patients, called the 'Guildford Borough Wing', following the pattern of naming wards in the hospital after the villages surrounding Guildford so they can separate Covid patients from the rest of the hospital)
Am also on telephone consultations following the taking of blood samples. To be honest, at present, I would prefer not to go within miles of a hospital, or, for that matter, a doctor's surgery. However, my haematologist has said that if I feel that I should be seen, then that would be fine. Similarly, based on the results of blood tests, and the telephone consultation, if the haematologist feels that I need to be seen, then an appointment will be made. Works for me.
My last 3 appointments have been telephone appointments, except due to an admin mix up over Dec appointment I turned up to an empty waiting area where I was telephoned by my consultant who was a few feet away along the corridor. I did actually get a face to face then. Unless there are specific reasons for a face to face I personally would prefer a telephone one as it is a lot less bother, I get a bloodtest done at my local GP about 7 days prior to my appointment so they have all the data that they need. In fact it was discussed in my Dec appointment that it had been so successful that they were probably going to continue with the telephone appointment system beyond the existing temporary arrangements. I am sure if you have specific concerns then a call to your haematology department will result in a face to face to resolve those. In my experience my face to face appointments only lasted 5 minutes at most to go over the blood results with a total of travel and waiting time of 3 hours or more. Of course if you are approaching treatment or change to medication then it is obviously more important to be able to engage in discussions with your consultant. Good luck.
We haven't had a face to face for nearly 18 months. We have a blood test before the appointment and so long as everything is fine they do a telephone chat. Much prefer that than attending for an appointment if we don't need to. We've spoken to our CNS as well who has checked we're OK. Mike takes Ibrutinib and has been on it for over 6 years with no/few side effects. it suits us not to travel to the hospital but if it worries you, contact them
Sorry to hear your Dads not feeling so well, hope he can see someone and get any necessary treatment required.I've also been on watch & wait for for over 8 years now and haven't seen the Haematologist for 7 years, have blood test at my local GP Surgery by the Nurse every 3 months. My WBC and Lymphocyte count is gradually increasing in the fifties (55) RBC count dropping get tired at times but I feel good for my age 75, hope I can continue along the same vane for some years to come as at my initial meeting with my Haematologist he said it could be anything from 6 months to 15 years before requiring treatment, so my goal is the 15 years.
Thank you Jimbo5491 Dad also get his blood tests done every 3 months. But has been feeling tired on and off. Dad has developed a bump each side of his collarbone which worries me and am confused if this means it is developing or he’s fighting an infection, which is why I am thinking for a face to face examination.
Thanks ButterflyRose for the positive energy, yes I think from the symptoms you've described you should have a face to face consultation. Hope you are able to have it scheduled sooner than later. All the very best, stay safe keep sane and healthy.
I hope the UK has some safe way for you all to get lab work. I go to the hospital at 6 AM when the lab opens to limit my exposure to others. Rose, ask GP or Haematologist about getting him blood work done.
I haven't had a face-to-face since autumn 2019 - I was offered one in early spring 2020, but turned it down myself, as that was when the COVID started to gallop.
Since then, I have had two blood tests and a letter from the nurse specialist to update me - I'm in remission, and that seems to be continuing.
I'd think the key thing here is - is your father still having blood tests? If he is, and they seem OK, then perhaps worry a bit less, or think of other possible causes. The new symptoms may not be CLL related.
If you are both seriously worried, then you must go to see a GP in the first instance, IMO.
Thank you scarletnoir . Dad is having blood tests before appointments. So this is his third blood test/telephone appointment since Feb 20, but he has developed a bump near his collarbone and that’s what is giving me anxiety and worry.
I understand your concern - swollen lymph nodes can definitely be a sign of CLL progression - I had swellings in my neck and armpits, before treatment.
I have no idea if there are lymph glands in the location you describe, so it is definitely worth seeing a doctor ASAP. I hope you get good news - in my experience (of CLL) nothing was worse than the uncertainty of waiting before treatment began.
I had a face to face consultation in September because I hadn't setten the doctor since March. Everything was deemed ok so I am booked for a telephone consultation next Monday.
I wouldnt want to get any where near a hospital at the moment, unless i was very, very ill. I havent had face to face with my Haematologist at all, had my diagnosis over the phone. Im due a face to face in Feb, but i expect it be changed to phone, if not i will cancel as i dont want to risk going near tbe hospital..
I know how your feeling @suzie42 and that’s what is adding to my anxiety about Dad. It’s such a mixture of feelings as I want Dad to be seen face to face, but worried if they call us to be seen at the hospital during these times.
Yes I totally understand how you feel, such a terrible predicament. Nobody should have to suffer so much stress. I really hope for a good outcome for you Dad. Stay safe and take care both of you
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