Confused! Do I have to follow up everything from my consultant with my GP?

[Fjdjdjdjd]

I’ve had a pretty frustrating day so would be really keen to hear other people’s experience and advice. I’m female, 32 mins it’s ET. I asked my gp if my contraceptive was the right type given the risk of blood clots. They have no idea clearly so say they will research and get back to me. They don’t. I follow up, and this time they say I have mo idea talk to your haematologist. I call the consultant who is furious and says it has nothing to do with them and is in the remit of the gp who prescribes. They then add that I should be on baby aspirin and my gp will have prescribed and be looking into other possible blood risk factors. None of this has happened with my gp. To be honest as well the letter I read from my consultant didn’t read like they were saying ‘give patient drugs’. So I’m still no further forward with any questions and have even more to chase. Is it always like this? Do you always have to project manage your healthcare? Or am I just having a day of bad luck?

[Mostew]

I would say bad day caused by lack of appropriate care by your Dr. When this happens to me I definitely 'project manage . ' Professionals should treat us with respect.

When I feel this is lacking I ask to see different consultants etc.

Ask your Gp for a referral to MPN specialist . You have a right to second opinion and most consultants at hospital s aren't MPN SPECIALIST S .

I do hope you have energy to ensure you get better care.

Meanwhile it's th hospital who should be prescibing you asprin, which you pick up at local GP.

Good luck

[Mostew]

Ps if your hospital has haematology nurses you can ring them to discuss your concerns . I find them very helpful. Write down all questions before ringing

[Fjdjdjdjd in reply to Mostew]

Thanks so much. I really appreciate this. I have a notebook specific for this all now. Although if my consultant tells me one more time ‘don’t be stressed’ after days like this is might explode

[hunter5582]

This is all too common. We often have to be our own case managers. It is a fundamental truth that assertive patients receive higher quality care. Passive patients do not. We must be our own best advocates.

Mostew is right about seeing a MPN Specialist rather than a regular hematologist. This is the only way to ensure optimal MPN care. Most doctors, including hematologists, lack the KSAs to provide the care you need for any MPN. Here is a list.

mpnforum.com/list-hem./

Do whatever it takes to consult with a MPN Specialist.

you are correct to question which form of contraceptive pill you should take. Most would recommend a progesterone-only form of birth control. Here are two examples.

mpnresearchfoundation.org/w...

hemato.chu-limoges.fr/hemat....

Please be sure to confirm this with a MPN Specialist as it pertains specifically to your case. The answer can change if you have a history of prior thrombosis.

I am surprised you were not told right away to follow an aspirin protocol. This is standard treatment for ET. You should also know what type of MPN mutation you have (JAK2, CALR, MPL). The genotype does bear on the expression of your MPN. Considering this along with your history of thrombosis, hemorrhage, microvascular symptoms and cooccurring medical conditions is an essential part of determining your MPN care plan.

There are excellent resources with which you can educate yourself. The MPN Voice site is a very good place to start.

mpnvoice.org.uk/

Here are a few more.

legeforeningen.no/contentas...

mpninfo.org/conferences/202...

All the best to you.

[Fjdjdjdjd in reply to hunter5582]

O thank you so much for all this information! I finally got through it a gp who knew what they were talking about who immediately put me on aspirin and told me to stop taking my combined pill. Only took 4 weeks and a whole day of chasing

[hunter5582 in reply to Fjdjdjdjd]

Glad you found a GP who knew what to do. I would be sure to stick with that doc as your GP. This really should have been handled by the hematologist from the beginning. I would definitely follow up with consulting a MPN Specialist ASAP.

All the best.

[rebeccaxxx]

Just to echo what others have said, it can be exhausting managing your gp and consultants but ultimately you will have to get good at it to get proper care.

If you are in the uk under the nhs your consultant should work with a helpful haematology nurse who can help you navigate this and write to your gp when needed, as GPs can be scared of doing their job sometimes.

Depending on who you are under for your ET you may be better off switching, your gp or your current consultant can make the referral for you.I find the team at Manchester royal infirmary great, Halifax were not a good fit for me. Good luck x

[Fjdjdjdjd in reply to rebeccaxxx]

Thanks. I’m currently at NHS cottage hospital under a locum consultant. All very exhausting but finally making progress. I think I’m just in shock at how much work this all is

[rebeccaxxx in reply to Fjdjdjdjd]

That’s no good you will need to find a specialist as hunter has said, even if the cottage hospital consults with that consultant. Many people see the specialist at guys once a year on video chat I think which could work for you if you can’t travel.

[Minu68]

So frustrating! Sadly, a reality for many of us, especially at the beginning of this MPN journey. At first, I was contacting haematology about symptoms or any other health issues I had, as they had said I should. However, often they just seemed disinterested and like I was wasting their time. Then when I don't tell them, like when I had a sinus infection, they are unhappy with me at the next appointment, even when there is no notable change in my blood counts. Going between the gp and haematology around treatment has happened everytime there is a change needed.... I've realised writing this that nothing has actually changed since my diagnosis and starting treatment... I've just gotten used to it, less worried about it and expect it. Not great, but it is easier now. I've stopped caring when they 'tell me off' about something. I use the E-consult form my gp has online, takes the stress out of trying to get through on the phone, and don't bother telling haematology about minor health issues as they arise. Just easier that way for me.This forum is where I would go first to be honest, I can usually find something relevant and people's responses guide me to whether there is anything I can do, or need to get investigated.

[Lola367]

Regarding contraception, always best to check with a specialist but my haematologist was OK with me taking the mini pill (progesterone only). Am 45 and just on aspirin with no history of blood clots so may be worth discussing as an option. Best of luck!

[Jean24]

So sorry you have had a run around. It does get better. The problem is not all the consultants in the haematology units know all about the different MPs.We had this problem at the beginning of my husband treatment. His consultant left, and we saw so many different drs in the unit and each one would say something different. We did get a good consultant, but unfortunately the specialist nurse left. Unfortunately the new specialist nurse just has too many patients and she just doesn't know my husband. So we always feel that we are wasting our time if we ask her anything. So any worries we have we ask our consultant, he also sends corresponding

Letters to our GP and to us. So our GP are kept in the loop. You will get there, so good luck in your journey. X

[Hopetohelp]

My consultant / hospital gives me my medication for ET/PV but she instructed my GP to prescribe aspirin. Mpn specialist important if you are able and one who is going to help and listen. As GP’s know little of our condition, choosing an important drug like oral contraction can have risks of clotting and so I would hope haematologist would want to ensure your medication would be ok for you. I would expect to have conversation with haematologist about pills prescribed by GP before taking them. Must be so frustrating for you

[Wyebird]

Horror! I would say that your heamo should advise your GP! Hope you get good advise on this site. Good luck xx

[ciye]

My haemo, informed gp what hrt was suitable then they prescribed it. Only meds hospital provide is my interferon.

[SilverET]

Progesterone only contraceptive is the way to go. It's often called the mini pill and does not have the clotting risk of the combined pill. I have take this for most of my adult life after being diagnosed at 17 with ET. You do need to take it at exactly the same time each day though for it to be effective.Managing your own health care is vital like the others have already said. In Australia we have very few MPN specialists so most often rely on Haematologists and GP's that we educate as we go. Not ideal but if you find the right people it makes a big difference. Keep at it, one step at a time even when it seems too hard. It's worth it and often you can reach a sort of balance for a long period of time where things go smoothly and you can live a pretty normal life. Good luck.

SilverET

[Yakety_Yak]

Great to read all the helpful advice and know we're not alone in this having to manage and co-ordinate everything it's exhausting on top of feeling already exhausted from the MPN but we have to keep on to help ourselves. I agree it gets a bit better and easier with time. I don't have a MPN specialist yet (it's about time I do that) but after every phone or in-person appointment with the various haematologists I've spoken to a letter gets sent to my GP informing of where we're at and any concerns and anything GP needs to do including meds that they should prescribe. I think that should be a standard basic for anyone in UK and on NHS. Don't remember if you said where you're based but if you are and that's not happening you should insist that it should. I also get sent a copy of that letter so if the GP doesn't do as said (they don't always seem to read them) I can call and follow up/remind them. I also call my assigned nurse if there's any concerns about anything and find that very helpful as others have said. Good luck with everything and keep managing things it's annoying and hard work but necessary as if left to (some) health professionals I believe I would be in a much worse health by now sadly. And asking advice on here of course is priceless 👍😉