My hospital appointment schedule has changed

[EmeraldA]

Hi everyone, I haven't been on here for a while as some life events took over for the last couple of years. I am looking for some advice and feedback about my hospital appointments, ( sorry, it is a bit of a long post), which have just been changed. Since diagnosis I have been attending a hospital appointment in northern ireland every 12 weeks. However, my Heamotologist has now changed these appointments to every 6 months. I do not get the appointment date/time upfront either, as I usually would do, I go on a waiting list and an appointment is sent out to me. When I enquired about this change I was told I was stable over the 4 years and that 12 weeks comes around pretty quickly. My platelets at diagnosis were 505 and latest 638. I have ET Jak2 and on asprin only. The hospital are also bringing in a new IT system called Encompass so I could not book in my appointment before leaving. I did have one previous experience recently when I went on a waiting list for a 12 week appointment and could not get/did not get an appointment, until I escalated the issue to the consultants secretary who very kindly indeed fixed this for me - I was very grateful. I am just wondering if 6 month appointments are normal for an ET diagnosis, and just wondered, what other people thought? Maybe this is ok and normal and I shouldn't be concerned that there has been a change to how often my ET is being monitored, but I just wanted to gauge other peoples experience and how often they are reviewed. Thank you! Brona

[Cat1001954]

hi it is a worry Iv waited 7 months this time due to doctors strikes it’s unacceptable try set start again for earlier appointments

[Cat1001954 in reply to Cat1001954]

Secretary I meant

[EmeraldA in reply to Cat1001954]

Thanks for replying. I did say we can try it and see how it goes. I felt however it was being communicated that this was the new norm. I was offered a 4 month review on a temporary basis but I think my issue is I want to know how I'm going to be reviewed longer term rather than sort term. If that makes sense.

[Cat1001954]

yes ask away it’s your body good luck x

[Mirror368]

I believe the important thing is to have a CBC lab in between appointments. This way you will be watching how your levels are trending.

Best wishes, Eileen

[EmeraldA in reply to Mirror368]

Thank you. This is what I have believed too. With my appointments being moved to every 6 months I will only be getting my bloods taken then too.

[Solyesh]

My appointments went from monthly to every four months once my labs became stable - if they remain stable after next appointment they might go to every six months. I do have a full lab work up every three months to monitor. If your platelets are rising slowly, perhaps you can ask to maintain the every 4 months protocol. Do you have an MPN specialist on your care team (either directly or one who works with your local hematologist)? Always good to get a second/expert opinion. Good luck!

[Mirror368]

I am not sure what country you reside. In the United States we could get labs ordered by our primary physician.

[EmeraldA]

Thanks Mirror368. How often do they advise that your bloods are done? I'm in northern ireland btw

[Mirror368 in reply to EmeraldA]

I get a CBC every six weeks at my hematologist’s office.

[Spanelmad]

Can you not ask your GP to do more regular bloods then it will not matter of its a longer appointment wait.It's more important that it's with an MPN specialist

[Scaredy_cat]

When I had ET and just on aspirin I too was stable. Originally they wanted to review very frequently but I pushed to have it less and eventually was happy when it was yearly. I was able to tell when something was wrong and asked for a blood test out of the usual cycle. At that point I'd progressed to MF.

[RubyTea]

Hello Emerald, I’m under 60, Jak2, ET, platlets 720, on 75g aspirin daily, considered low risk. I’m supposed to have a phone call with a hospital haematologist every three months but it is so random and sometimes they suggest six. I’ve just writing my first ever post about my latest experience as it’s so frustrating and I am now complaining about how my care is being managed, plus starting the process of getting a referral. It’s all such a mission. I’m so flummoxed and cross about it all. I find it such an anxious time when I don’t know what consistent care should look like for low risk patients. I would prefer to be monitored consistently every three months even though considered low risk. Sorry if I haven’t helped, but thought I would share anyway. Will post about my recent experience just in case it resonates with anyone. Take good care, kindest thoughts.

[Aoif3]

Hi Brona,I too, am in Ireland with ET and jak2 pos and am on aspirin only treatment and I only meet with my consultant every 9 months. It has been this way since my diagnosis. Hope that helps! Aoife

[EmeraldA in reply to Aoif3]

Thank you Aoife3, that is good to know. May I please ask if you see you consultant every 9 months is that the only time your bloods are monitored too?

[Aoif3 in reply to EmeraldA]

Hi, That's right, I get my bloods done 2 hours before the consultants appointment then she has the results ready when I go to see her. 👍Aoife

[EmeraldA in reply to Aoif3]

Thanks for letting me know. Would you prefer your bloods done more often or are you happy with this length of time between bloods at the moment? ps my daughter is called Aoibhe.

[Threelions]

Hi,

My platelet range has been good for the last 3 years. I am still, however, seen & thoroughly examined every 3 months at Guys, London.

It is a great sense of security knowing that I’m thoroughly checked 4 times a year as it helps to show a more accurate trend graph & can highlight any changes quickly & efficiently.

Im ET J2+ & have been on peg for a number of years.

I personally wouldn’t be happy just being seen every 6 mths, 9mths or yearly.

All the best

Mark

[hunter5582]

The decision about how often to be seen should be a shared decision, not a dictate. This is not a black and white decision and there is no specific protocol for frequency of visits. It is worth noting that many healthcare systems are struggling with having too few resources to see patients as often as is optimal.

For what it is worth, if I was stable and symptom-free I would be comfortable being seen every 6 months with an appointment. I would likely do a CBC/CMP every 3 months to monitor if needed. I would also have an expectation that if any issues came up, a more urgent appointment would be scheduled.

It matters what you are comfortable with. Assertive patients receive higher quality care. Passive patients do not. We much each advocate for what is in our own best interests. This is both our right and our responsibility.

[Exeter21]

I still insist on 12 weeks as I love me to know if any change even though stable currently. I am in UK 👍. Fortunately Haemotology agreed. . Julia

[EmeraldA]

Thank you so much for taking the time to reply to this. It is really good to get others insight into this. If my appointment is every six months then my bloods will only be done then at that 6 month appointment. The thought that has occurred to me is that we are monitored for changes and trend over time and if monitored less then less information will be available to make a decision on anything and therefore will need a longer time frame of monitoring to see those trends and or issues. I did attempt to voice my concern at the time. It's been a few days now and I have realised that I don't feel that I am comfortable being monitored less, I'm lucky I'm stable but that can change at any time, so not sure if that is an adequate reason to have my bloods done less / attend an appointment less often. I always try and remember what @Hunters says about more assertive patients receive higher quality care. Thank you again so much everyone for your advice and experiences it means a lot. I'm going to the MPN Voice conference next week and will raise it there. Brona X

[kiwitraveller]

I have prefibrotic myelofibrosis and only see my haemo every 6 months. My platelets hover around 600 - I go for blood tests monthly so am monitored. Am on aspirin and Hydroxycarbomide 10 x 500mg a week. I could increase them but then get even more anaemic so leave. It has been like this for a few years so although high - stable - and I feel fine.

Perhaps you could ask to have monthly bloods done.

[EmeraldA in reply to kiwitraveller]

Would be just happy to continue with my bloods monitored every 3 months tbh or 4 I would agree to. With less blood readings there is less data to understand any trends. Thank u so much for replying.