Hematologist

[Palace53]

When I read you posts you all seem to have a hematologist that you see all the time. I have Pv and budd chiari have only seen the same doctor twice in nearly 2 years for Pv and for the bud it's a new one each time . Now it's by phone they don't see you it's like starting over each time had scans called off to.

[Ebot]

Hi. I’m up at Guys and I certainly don’t see the same person every time. When I was first diagnosed I saw Prof Harrison at pretty much every visit but as time has gone on and especially as the department seems to have got busier and busier I can’t recall the last time I saw her.

However, the team has its regulars so I have formed relationships with them over the years. And there are two superb CNSs. So if I have needed extra support or advice I can access it. I tried to make the system work the best I could to maintain some continuity. I totally agree that the worst is when you feel you have to ‘start over’ each time.

I’ve had my ups and downs with MPNs over the years but I’m pretty stable now so consultations are much briefer and to the point. I’m not sure how I feel about telephone consults. They seem unsatisfactory in so many ways. They are OK for me now but I’m really glad that they weren’t necessary at the points where I’ve really struggled with my ET / PV.

[Palace53 in reply to Ebot]

My cns's are ok as there is only 3 my last tele appointment I told the doc I felt tired and light heady, and breathing abit different and a few other things I have just got the letter from him that goes to my gp it said I felt fine and well if what you tell them is not noted down the gp and next doctor don't know what is going on with you

[Ebot in reply to Palace53]

That is so irritating and unsatisfactory when that happens. I can understand your frustration. Maybe worth raising with your consultant and chatting through with the CNS?

[Palace53 in reply to Ebot]

I will do next cns's telephone appointment is in 8 weeks

[Chaz1]

Hubby doesn't see the same one each time. He has had phone consultations with the main one through all this pandemic which has been great but before that it was whoever got his results off the screen first I think. Would see a 1 out of about 6 Haemotologists & once even the registrar who hadn't a clue & we had to tell him what needed to be done & when. We have been able to request at appointments if we want to see the top one particularly, as well as the saying the one we really didn't want to see ever again. They try to accommodate it if they can because each consultant seems to have their own opinion on everything 🙄

[swimswam]

I have seen six different heams. at my hospital in 2 years. I was told that most of the ones I have seen were locuums as the one I saw first left. I am now on 3 monthly telephone consultation with a Heam nurse, who fortunately seems very good. I will only see the consultant once a year, so have never actually seen or spoken to whoever I am under now, and in all probability they will have left before I actually have an appointment with them!

[Palace53 in reply to swimswam]

It's nice to know I am not alone !

[Fika500]

There is a team of haematologists /MPN specialists where my husband goes. You can request who you’d like to see when you check in - you may wait longer but we think it’s worth it for continuity and communication.

[Hydrox]

I have not seen a consultant for over 3 years, I am considered stable with E T, and see a specialist nurse 3 monthly.

[mark382]

I saw Consultant Haematologist for 10 years. As she was getting extremely busy she asked if i would mind seeing a oncology pharmacist who had been trained in blood disorders as most of the time my appointments were, blood good see you in 3 months or blood bad need a venesections, see ypu in 3 months. I agreed and it worked well. Oncology pharmacist would discuss results with consultant. This worked for 12 months, but unfortunately she has now gone on maternity leave. My last appointment was via telephone due to Covid. Spoke to a new Haematologist (Speciality Doctor in Haematology). He seemed very nice and said I needed 2 venesections and see him in 3 months. Hope this is the last change, as had consistency for 10 years.

[Otterfield]

I always see the same one but that's probably because the hospital is small. When I lived in West London, I would see any one of a team but I got to know them all well.

[hunter5582]

I am sorry to hear that care is being delivered that way where you are. Unfortunately, some health care systems lose sight of the fact that the science of medicine is only half of the equation. The art of healing is just as important. Healing occurs in the context of the relationship between the patient and the provider. Being seen by a changing sequence of providers also impacts the science of medicine as the provider does not have the same level of the history of your case and how it has progressed over time.

I am fortunate to gave more control over the providers I see. I actually see two hematologists. I have a local hematologist who is a terrific physician/healer - but not a MPN-expert. He works with me to manage my on-going MPN care. I also periodically see a MPN-expert hematologist at the Johns Hopkins MPN Clinic. This doc consults and advises us on my treatment protocol and answers specific MPN-related questions and issues as they arise. The MPN-expert doc was recently involved when I had surgery regarding my care during surgery.

This approach is working quite well for me. I feel engaged with my providers and empowered to make good decisions regarding my care. Both docs are very respectful and supportive. They actually listen to me and answer my questions. They also respect my right to make my own treatment decisions. I feel truly blessed to have such a good situation for managing my MPN care.

I really do wish that everyone with a MPN would be able to find a truly optimal way to receive MPN care. Many are not fortunate enough to find this so. It accentuates why it is so important to realize that assertive patients receive higher quality care. Passive patients do not.

[Ratton726]

I have seen same consultant every time (small local hospital) out of London-consultant trained at Kings College -he is considered an 'expert' re anything blood!

-but as was mentioned now all consultations over the phone (I have ET and JAK 2-!) Next call 6 weeks!!

[Paul_1971]

It is odd, I have the same consultant who, apart from a couple of times, I have seen each time i have had my consultation. The other time was with the Dr who referred me to him so I am happy with that.

My sister on the other hand with ET and Now PV has always seen different consultants despite being under the same department.