Change of clinic

[Balser]

I had a telephone appointment with my haematologist on Monday but instead it was with a nurse led clinic. I have apparently been handed over to this clinic. I was not told this was happening nor was it discussed at my last haematology appointment. Has this happened to anyone else? It has quite upset me particularly because I was not consulted but don’t know whether I’m overreacting. I was diagnosed with PV just over a year ago. Had to stop hydrox due to adverse effects and am now on peg interferon. Any advice would be appreciated

[Rem31]

It’s unfortunate you weren’t given any warning about how your haematology clinic works and so you may have felt you were being passed on to someone less capable and interested in your condition.

In my experience specialist nurses are well qualified for their roles, very supportive of their patients and have more time to discuss and explain matters raised. They work closely within the haematology team.

When all is stable I prefer nurse led appointments but I’m still seen periodically by a mpn specialist, especially if there’s any concern raised about my symptoms or blood results.

Having confidence in the team treating us is so important and it doesn’t take much to knock that confidence.

[hunter5582]

Were you shifted to a Nurse Specialist at the same clinic or to a completely different clinic? Regardless, you are correct that you should have been told in advance that you would be shifted to a mid-tier provider. What some practices fail to understand is that your relationship is with a specific provider, not with the clinic they work in. You should always have choice in who your providers will be. Many mid-tier providers provide excellent care, but it should be your choice about who you see.

It is very important that the clinic you are being seen in is one of the MPN Specialty clinics. Either that or consult periodically with a MPN Specialist who can guide the care provided by a regular hematology clinic.

I would note that I see several mid-tier providers. They provide excellent care. However, it is my choice about who I see. Suggest you advocate for what you want from your providers. Assertive patients receive higher quality care. Passive patients do not.

All the best.

[Balser in reply to hunter5582]

Thank you for your comments. They were very useful and reassuring My appointment was supposedly with the haematologist. I had requested a referral to a MPN specialist and had just been seen . I thought the appointment was to discuss how I had got on but instead I was rung by the haematology nurse and told I would be followed by the nurse led clinic from now on.

[hunter5582]

It sounds like you need to make a decision about whether that is acceptable. It may actually work fine providing you have access to a MPN Specialist who can guide your care. All the local clinic will have to do is execute the care plan you work out with the MPN Specialist.

You may need to do more than request the referral to the MPN Specialist. Many on the forum have reported problems with this in some healthcare systems. If the referral has not already happened, you will need to make it happen. Some have reported success by contacting the MPN Specialist directly and getting an agreement to be seen. Then circle back with the acceptance and make the paperwork happen. You may need to be very assertive to make this work. Others have chosen to go private for the MPN Specialist consult.

Regardless of how it gets done, it is worth doing. Having a MPN Specialist on your care team is the only way to ensure optimal MPN care.

All the best.

[katiewalsh]

Do you think your doctor had a “hissy fit” and was irritated you chose to confer with a specialist? They can be arrogant. Sry for your disappointment. Understandable.

[Balser in reply to katiewalsh]

I did wonder if the consultant was annoyed but I had been told he wouldn’t mind. I don’t object to being referred to the nurses who have been very helpful in the past. It was the way it was done that got me upset and I was conscious that I might be overreacting. I wanted to get other people’s reaction as the nurse is ringing me again on Tuesday. Thanks to all who’ve replied. It’s been very helpful.

[Rem31 in reply to Balser]

Maybe speak to someone in the hospital PALs office. I was once left very angry by the attitude and behaviour of a phlebotomist. I felt someone should point out the effect caused to a patient but I was in no frame to deal with it. Nor did I want to make a formal complaint so spoke to PALs and they relayed my feelings and observations as a patient. There’s a learning opportunity here for your haematologist.

[gset]

I think some of the nurses in this area have amazing experience and knowledge of patients at a detailed level and so if I am seen by a nurse I am never disappointed. They often go into more detail and have a lot of relevant advice. These days there are a lot of nurses with fantastic clinical experience and great judgement. Many patients tell them more than they do a dr and they have a lot of experience of the side effects and unpleasant things we experience. They know when to refer a matter to a doctor if they cannot deal with it. All depends on the individuals of course but I applaud all the nurses I have dealt with.

[DottyDaisy]

Hi Balser.At my initial consultation with the MPN specialist, she personally introduced me to the Clinical Nurse Specialist and told me I would communicate mainly with her. This has worked really well. Any queries go back up the line to the Prof, who will occasionally contact me directly.

This seems to be about communication. I am sure I would have felt differently if I hadn't been told in advance. I confess I do tend to throw a hissy fit when medics don't KEEP ME IN THE LOOP.

[Hopetohelp]

Here in the uk my experience has been with a consultant initially and periodically and then with the nurses in between. My haematologist told me personally that she gets to see all the results, hence why she pops on the phone for my consultation when she wants me to change something. I generally get a nurses call when things are stable

[azaelea]

Hi Balser, I understand how you felt when it was a Specialist Nurse clinic who phoned you without having been told or asked for your agreement. I’m ET on Hydroxy coming on for 4 years now and about the end of first year the Dr. asked me if I would agree to being seen at the Nurses clinic from then on. I did agree, but after two consultations I asked to revert to seeing the Haematologist, which was no bother and have kept it that way since. I suggest you ask to go back to your original arrangement and speak with your Haematologist at each review. Good luck. Fran

[ladyanello]

I meet few doctors who have a truly deep knowledge of PV, never mind nurses. I have had the disease for over sixteen years and have met one...he is a specialist (I burst into tears after the appointment because for the first time someone actually could tell me what was happening). Other than that, I have gratefully depended on doctors that care to explore PV and help me to get the help I need. In other instances than my MPN, I agree nurses can be a substitute. I would change my general haematologist to someone who actually understands I have a complicated disease situation with symptoms that are constantly in flux.

[Borage]

I was about to be given appointments with the specialist nurse instead of the consultant. Covid intervened and I have had a blood test at the hospital followed a week later by a quick telephone appointment with my consultant, then I collect my medication from the hospital pharmacy. It is about two and a half years since I saw my haematologist.

[Wyebird]

I think the way your situation has been handled is upsetting. I’m very happy with my nurse. She was with me from the start. I know I’m in capeable hands. My appointments are a mixture. Clinic, clinic with nurse, phone calls. You want to feel cared for. Is your nurse a specialist ? Have you ever met her? How long have you been on Peg for ?