I have just had my regular heamo appointment after being on Pegasys for 6 weeks. My consultant has left , ( 3rd one in a year! ) My platelets are still in the 600 range. I have now been told that I am being moved to Telephone consultations with a heamo nurse. ( I’ve never met her! ) She will ask my consultant to prescribe and I will only have a yearly appointment with a consultant, but they can’t say which one! Is this normal practice? Does anyone have any experience of this? I was told it was to cut patient waiting times and the cost of unnecessary consultant appointments. Don’t feel very reassured, and would like to hear of other people’s experiences.
Teleconsultations: I have just had my regular... - MPN Voice
Teleconsultations
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swimswam
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Hey there Swimswam... 
Yes, I agree that it is not a nice feeling to be treated in such a way...
Many of the problems that surround having an MPN are sometimes caused by medical people who know so very little about these types of rare chronic conditions. It is unsettling of course, and I can really empathise...
In Australia, we might have as little as FIVE (5) dedicated qualified practitioners that one might describe as an MPN specialist...
Personally, I have spent a great deal of time bringing my chosen GP up to speed on all things MPN...
However, in the UK, I believe that you guys may have a few more options than we do Down Under in the land of Oz...
Hence, If I was you... I would be seeking a referral to someone who really knows what MPNs are and how they can impact upon any of us that has one etc...
Perhaps you should touch bases with Maz, and ask for a List of MPN specialists in the UK... Maybe Maz can assist...?
Keep smiling, and keep looking for the right help... In the grander scheme of things I believe that doing so is quite important on a number of levels...
Best wishes
Steve
(Sydney)
Hi swimswam.
I was diagnosed in 2016 by a lovely, compassionate Consultant. I can remember thinking ‘great,’ we’re going to have a good relationship. That’s how confident I felt with her, however, that was the first and last time I have seen this, or any other Consultant!
I see a CNS for every appointment. It might not be as bad as you think. CNS are advanced nurse practitioners with specialised training in haematology. My CNS assures me that the Consultant Haematologist checks all the clinical reports of her patients, and if I want a consultation with her, I can always ask. I haven’t felt this is necessary yet. Having said that, my lovely CNS has left, so like you, I’m presently apprehensive. Continuity of care is always a worry.
I don’t know how I’d feel about phone consultations with a CNS that I have not formed a prior relationship with though. 🤔🤔
Hi Swimswam,
I have been on telephone consultations since last June, but my consultant or one of his team rings me, not the nurse. I had to start Methotrexate for RA last September as well as being on Hydroxy for PV so I am being monitored very carefully. Fortnightly blood tests and he rings me every 6 weeks. I would still like to see him face to face occasionally but feel I am being cared for.
My nurse specialist is very knowledgeable and I wouldn’t have a problem speaking with her. I feel they know more than say, a GP as they are amongst it all every day. I keep myself well informed with my blood tests etc and am not afraid to ask questions about anything that is worrying me.
Maybe if you find it doesn’t work for you you could request to return to face to face consultations.
Best wishes
Judy
Hi swimswam like you the last two times I have been to my appointment at the hospital the consultant has ask me to go onto the telephone consultation and I strongly refuse due to the fact that I was on that at first for my ET for about seven years the nurses were not helpful and I felt didn’t have time to listen to me . Three years ago my ET was changing to PV I felt very unwell and told the nurses this and they took no notice finally I went to my GP who did blood tests and rang the hospital when the results were back the next day after blood test to say I need a argent appointment the same day . I did complain but never got answers but it has left me with a fear now I do think it may depend on what hospital you go and I am sure some are good but I do feel you feel much more reassured when talking face to face and I do feel they have to listen to you I hope things work out for you but do what you feel is right for you if you can can I ask where youl live in the UK best wishesPoppy
Hi Poppy I live in Nottinghamshire but my post code means I’m under Kings Mill at Mansfield, thinking of asking to be transferred to Nottingham as it has a lot bigger Heamo unit, but I wasn’t sure if nurse telephone appointments were common practice everywhere for ET. One of my main objections is that I will be at work when they phone. The thoughts of trying to discuss my medical problems and thinking what I want to ask amid my work colleagues doesn’t appeal at all.
Sorry to jump in. Another thought. Could you treat your phone consultation as an appointment and maybe find a bookable meeting room at work?
My experience from Scotland (maybe just my trust). Being on pegasys (at the moment) stops me going on to the teleconsulations. The is because only a consultant can authorise the prescription. Our hospital pharmacy only wants it dispense a maximum of 3 months worth of injections.
I have started educating my amazing GP. In the UK, we have a short in all consultants posts. With better treatment of blood cancers, we are all living longer. Therefor I see a time when I will be asked to go onto teleconsultations.
I personally see many advantages in sharing information by phone or email. I’m doing as much as I can to create an environment, I would be happy with, if this happens to me.
Good luck with your journey. Sending ehugs xx
Good idea contacting Maz.
I’m also on Pegasys but apparently after telephoning me the nurse will then ask a consultant to prescribe. I will still have to make two trips to the hospital. (30 mile round trip) One to have a blood test and another to pick up the Peg when the pharmacy phone me to say they have it in stock!
I feel this annoyance might be improved through a chat with your CNS. A couple of suggestions, which might be helpful or might improve your situation, could you have your blood test done through your GP? Could the prescription be handed into the pharmacy before you have your bloods done? I do understand the consultant might want to change the dosage but as you are administering this, the the CNS might have a solution. Good luck with finding a better solution.
If you decide to go ahead with the ’teleconsultations’ your place of work should be able to meet your privacy needs.
I have my bloods done at the GPs the week before my clinic appointment, I don’t know if that’s feasible for you to make your life a bit easier.
Kings Mill is where my CNS has transferred to. I will really miss her.
Good luck and keep us updated.
Mary
Hopefully I will get your lovely CNS. I think I will feel a lot better about this when I’ve had my first consultation. I think it’s probably not knowing who will be phoning and how the situation will work that’s the most worrying thing. Probably stressing for nothing but feel a lot better for being able to discuss it with people who understand how I feel.
The thing is you can give it a go, and if it doesn’t work out then you can look for alternatives. I’m sure they’ll be able to work in your best interests, so you’re not running around too much.
I hope you get my lovely, lovely CNS too. I’ll private message you her name.
Good luck
Hi swimswam I am in Essex and it’s all about saving money and time which I understand but it it takes our time has you say I am on Pegasys and it’s working well I know they are going to keep asking me and I only hope I can keep going to the hospital for has long has possible let us know what happens Poppy
Hey...... I've just read your post and find it rather disconcerting that you're now into telephone appointments, the reason I'm concerned is I'm partially deaf (cannot hear on phone at all) so if my haemo were to go down this road I'd be pretty worried. Haemo I attend is absolutely brilliant and so easy to talk to so I'd be devestated if I'm put in same position as yourself. Good luck and hope you get sorted.
Phyllis xx
Hi,
I am ET CALR + for 30 months.
I have been on teleconsultations with a nurse for over a year. I have them every 3 months and don't see a consultant. I have a blood test a few days before the phone call. It works well and saves everyone time. It also allows the consultant time to see patients who need to be seen.
I don't see it as a negative. I'm sure if I needed to see a consultant I could.
I don't think you should be concerned it's a good thing.
All the best
Jocko
Not to worry you but our hospital have gone over to GP led treatment (for many if not most ET and PV patients). This involves GP's ordering bloods, a group of specialised Doctors/CNS (in the hospital) having a look at the results and sending an update of the results to the patient and GP my mail. This is my understand from our local MPN voice forum. Many patients like this as it saves a long trip to the hospital.
Thanks for everybody’s helpful comments. Feel a lot more reassured and less stressed about the situation. It seems from your comments that other hospitals are going this way, and I’m willing to try it if it works OK. I think it was the fact that I was told my consultant had left, and then it was suggested I went on nurse telephone consultation that worried me. If my regular heamo had suggested it I don’t think I would have panicked. Talking to people on here has given me a lot more confidence to give it a go. Thank goodness for this forum😀
If you’re bloods reading are at good levels and you’re stable on your medication with no other complications or side effects. I would agree that nurse telephone consultation are appropriate. If not, you need to see your doctor so that medication can be tweaked and referrals for investigations can be made. My haematologist in Basildon tried to put me on nurse telephone appointments soon after diagnosed. At the time I still was struggling with fatigue, rashes and depression. I transferred to Guys in London who found I had an allergic reaction to allopurinol. I was also referred to a sleep clinic who found I had sleep apnea.
My advice is that if you don’t feel ready and confident in the care you’re getting then say so, and request to still be seen by a doctor or make a change of hospital if you can.
It could be to do with the area you live. I’m very lucky as My GP, Local Hospital Consultants and Guys Hospital all see me regularly. Ironically I had to suggest that the local haematologist hospital appts were watered down a bit as they seemed to be doubling up what Guys was doing and, at one point all 3 had made appointments to see me over a 2 week period.
Not much help, I know , but I do feel I’m being very well looked after and if I didn’t have a hands on approach from my healthcare team and was suddenly moved to phone appointments I wouldn’t be comfortable.
Hi yes I’ve been under this arrangement for the last two years and it works really well with no problems, I think it is only offered to patients with a very stable condition as mine is
Hi swimswam
I have PV and the hospital I attend is a 50 mile/3 hours round trip. When first diagnosed I had to attend every month but gradually this extended as things improved. I always see the same consultant and on one visit I asked why I had to visit for a 5 minute consultation to be told, "The blood numbers are fine, keep taking the tablets and have the venesections if required."
Since then I have blood tests every two months, and a venesection if needed. The results are checked by the haemo nurse at the hospital oncology unit. The consultant rings me every 6 months by appointment and is usually on time. There is a proviso that I can visit the consultant if I wish, or if the blood test results showed something adverse I would have to attend the hospital.
This arrangement works well for me but understand it may not suit everyone.
Best wishes
David
I am on phone consultations and so far have found them very helpful. Have never felt rushed and have asked lots of questions which I find it easier to do in my home environment where I am relaxed. Although I am online for blood test results the ones ordered by haematology department at the hospital do not come through so I request a copy via email after I have had my blood test done a week before. I find that means I can prepare myself with any questions that I need. Good luck
Your phone consultation sound very organised, I think one of the problems for me is that I will be at work, and not always within hearing distance of my phone, or able to answer it privately unless they phone at the exact time they state.
At each phone appointment we rearrange the time for the next appointment at a time that will suit myself when I can be free. If the appointment is 1:00pm they will call within that one hour slot from one till two and have been very reliable in the past. Hope that helps to give you a background to the way it works
Wondering where you live . My consultant won’t let me have results before I speak as k to them . Would like to know and prepare questions like you
Phone the haematology Department and explain that you want to prepare yourself for a more efficient consultation. I can only think that they try to stop people worrying by explaining results first. Good luck
Hi swimswam. This was suggested to me after my platelets came to within normal range. I am still ET, JAK2+ and contend daily with symptoms of both the condition and the drug (Pegasys). My haematologist is not a good communicator and gives no information whether asked or not. If a symptom is mentioned by me I'm told to visit my GP. I only mention symptoms I know to be linked to the condition or the drug. I know these things because I have done quality research rather than 'googling' as my haema suggests.
I refused to be changed to telephone appointments. It's your choice! They get paid a lot of money for each patient registered to them. You will still be on their list whether or not you are communicating with a nurse instead. Think about it. Is it reasonable? All the best Penelope
I can understand your concerns about teleconsultations. When it is the only contact you have, it is hard to relate to the provider and for the provider to relate to you as a person rather than just a voice on the phone. Starting with an in-person consultation to establish a relationship would really be a best practice. Then both patient and provider can connect a person to the voice. There is more to the relationship between a health care provider and a patient than numbers on a lab and a prescription for medications. The art of healing is based in the relationship between two people, one providing and one receiving health care. Note, the emphasis is on CARE.
Having said that, there are better ways to provide tele-health services. I work in behavioral health (in the USA) where we write procedural protocols for the provision of telehealth. Most medical boards and some regulatory agencies also have standards for the provision of these services. It would be very reasonable for you to request a copy of the written procedures that your providers are expected to follow. You cannot advocate effectively for yourself unless you know what the rules are.
I would also note that telehealth can include tele-video-health. This is actually what we typically do when prescribing or providing other behavioral health services remotely. Being able to see the person you are talking to adds a significant dimension to the interactions. It provides more information and humanizes the interaction. Between smart phone and computer technology, this is very easy to do and there is essentially little/no cost involved. Health care systems that do not offer this are just not trying.
You mentioned switching healthcare systems, which you may well need to do. Others in the UK have mentioned this in past posts. We often need to do the same thing here in the USA, though our systems work differently. Below is a list of patient-recommended MPN expert docs. Perhaps you can find one near you that you will be able to access.
Hope this helps.
Greetings from Fleetwood England.
I have been on phone appointments for two years. Very good .
It works for me.
If there are any changes I can confidently share with her.
I am going on holiday to Madera and she was very good to give me a covering letter the next day.
My team are very supportive.
Hi
I was diagnosed in May 2017 and have seen four different consultants, the last one left the day after my consultation in November. I have on several occasions had blood taken at my GP practice and then a phone call with the Clinical Nurse Specialist at the hospital, which of course has saved me travelling to the hospital and I have no problem with that, they are efficient, knowledgeable and ensure that I have enough Hydroxy.
The hospital I was being treated at is a general hospital and for some of the reasons you and others outline, I spoke to my GP, and others in the profession, and have moved my care to a large teaching hospital not far from where I live, which is also a centre of excellence for haematology. There are five consultants and two CNS and after my first appointment last week have just been for one of two appointments for venesection as my red count is a bit raised.
The journey to / from the hospital is longer however I just know that the facility is far superior as is the specialist care I will receive from now on. Once my counts are back to normal I expect to see the consultant once per year and a phone call with the CNS in between times so I believe this is normal practice.
Regards
D..
Oh that’s awful. How easy would it be to have an appointment with her and a heamo as a starting point.
I have a fab CNS nurse who is currently being trained to prescribe. Because of the relationship I have built up with her a telephone consultancy would not bother me. It’s extremely important to feel cared for. Something I feel you have been denied.
I wish you well
After my bloods had become fairly stable (after about 9 months), I was transferred to nurse led telephone consultations. I can see it saves money and whilst my bloods remained stable it seemed Ok, but I have found that as it is not the same nurse who phones me each time, I have no relationship with them. I have never met them. I have asked them various questions which they could not answer and since my bloods were stable, I suppose they were not going to spend time finding out the answers. They dont seem to have time for questions. They are also frequently late in calling me (not a problem for me, as I always arrange to be at home to take the call.)Recently my bloods have had a wobble (at least I hope it is only a wobble) and the nurse/s have not been able to answer my queries. Although they increased my medication, they proposed leaving me another 3 months before the next test. On discussion they did bring this forward, but I don't feel well supported at the moment.
Oh dear, your experience doesn’t paint a very reassuring picture of nurse tele consultations. I think, as others have mentioned, if the same nurse phoned and a meeting with them could be arranged to start with, I would feel far better supported. I only hope they phone on time as I’m probably going to have to sneak into an empty classroom at work to answer the call! Hope your own situation improves and you get back on track.
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