When we read of the heartache and in some cases misinformation people, at such a vulnerable time, especially at diagnosis have to go through, would it be possible for someone to update some of these institutions on the definition of MPNs.Many GPs have to look up the internet to find out what an MPD is and many websites still define this group as potentially precancerous conditions and have not updated their websites to MPN as opposed to MPDs including the massively important MacMillan Cancer Support charity. The contributor on this website who's GP consistently refuses her request for free prescriptions bears out the serious effect of this misinformation. I know my own GPs still do not regard it as a form of cancer.
What do you think Maz? If you could read the MacMillan information which is dished out to new patients you will see it is seriously out of date.
Sorry, not Maz, here, but just wanted to add my voice to yours and also to reiterate the sense of frustration that is evident among so many fellow MPN suffers. Everything I know about my condition has been acquired through MPD Voice (initially) which I stumbled upon through trying to find out more about my condition (ET) via the internet about 5 years ago and now via this site, having joined in the conversation with the MPN community.
I was diagnosed with ET over 18 years ago! So for 13 years I did not even realise, that what I had, was described as a form of cancer (a huge shock) and as I read on and came across fellow suffers, it was as if a dam had been broken and a light switched on. Emotions were released and the penny dropped as I realised that so many spurious symptoms that I had experienced over the years, both before and after diagnosis, suddenly all made sense.
I am very fortunate, in as much as, I lead a very full life and for the majority of the time am relatively unaffected. However, I do have to take HU, plus aspirin and a low dose blood pressure tablet and like the rest of you have regular blood tests and consultations. But when it came to getting a Medical Exemption Certificate, I had to initiate it. It was about eighteen months ago and I obtained it through my haematologist - not my GP. At no time was this flagged up, and I had to insist that it was referred to as an MPN not an MPD on the form so that there would be no possibility of misinterpretation.
But, as you say, we should not be fighting these battles. Surely, this information should be shared more widely with the medical profession and affiliated groups. I recognise that the advances and progress made in recent years, in understanding and treating these cancers, have been fairly rapid, however, surely organisations like MacMillan should have caught up. Most terrifyingly of all, shouldn't ALL haematologists, now be far more informed about MPNs, I realise that they cannot be "specialists" in everything that relates to blood, but surely they have a duty to be fully informed in the basics, so that this knowledge can be shared with their patients - particularly understanding the very many symptoms in common, and the entitlement to the Medical Exemption Certificate.
I really look forward to hearing from Maz, who I am sure is already looking into your request, as she is utterly brilliant, but I am sure that very many others on this site will have something to say on this very frustrating subject, of ignorance in the understanding of these conditions.
Thank you for getting the ball rolling.
Amarylis
Thank you for your agreement and support Amarylis. I had PV diagnosed only three years ago so you have much more experience than I but don't you agree that when you speak to some GPs and they quote this newly-read by them out-of-date information over and over again it becomes patronising. I am repeatedly told my PV is well-controlled (which it is) and therefore I should be symptom free. It is well-controlled by the skill of my haematologist as well as changes I have made to my diet etc based on all the information I myself have found on the internet. Thank goodness we have that option and of course this wonderful forum.
As soon as I discovered MPD voice, I printed out as much stuff as I could and then sent it to my GP. I also immediately asked my Haematologist, whether I was JAK II positive, he searched frantically through my notes, and then promptly sent me off for tests (I was). My GP is lovely, and my original haematologist has now retired. But it is frustrating that we have to become the "experts" - let's hope that the organizations and specialists that are associated in some way with MPN's, get themselves sorted and become fully conversant with the latest findings and information on these disorders. But as you say - thank goodness for this community.
Hi Crazy Daisy, Totally agree it is so frustrating to be told everything will be fine - my haem can be quite patronising. The venesection clinic nurse at my local hospital is more honest, doesn't try to hide from the hard questions to answer, like "will it progress to MF, How long will I live, etc." My haem tells me I should be symptom free when my blood counts are good and we all know that's a heap of rubbish. My GP freely admits he knows little about my PV although it was him who spotted it in the first place. I too try to eat healthy, push myself out the door (sometimes) to exercise and try and live as normal a life as possible. But just now, in particular, I am reminded that I have a permanent condition as I struggle with fatigue even though I had a venesection back in April, so my counts should be ok (but thinking of getting them checked).
I totally agree thank goodness for this wonderful forum and the wonderful people on it!! Best wishes Aime x
PS - going out to my hydro pilates class - causes tiredness, itchy skin but feel better, more relaxed after it and does so much good for my joints!!
Hi CrazyDaisy, Macmillan are definitely going to update the information on their website this year, Prof Harrison has written to them about the definition of MPN, but I can tell you that from the experience of us having a new website developed that any changes do take a while, they obviously have to re-write the information and then get it verified before they publish it. I can also confirm that our new website, with our new name of MPN Voice will be up and running soon, again, we are updating a lot of the information we have. We are also looking into producing something that people can take to their GP with information on MPNs, this will be small, about the size of our ID cards. Also, we are looking into sending out our MPN Voice posters to GP surgeries, if any of you think that your GP surgery would display one then we can either send one to you or to the surgery if you email me at maz.cd@mpdvoice.org.uk. We are also sending out posters and drug/information booklets to lots of hospitals around the country for nurses to give out to their patients, these can be taken to GPs to explain what ET, PV and MF is all about, these posters and booklets will be available at the patient forums. Maz
Hi Maz
That is wonderful. It should make a tremendous difference. I will email you with my GP surgery and if you would send one to them that would be great.
I do realise the work that goes into all this updating and verifying and am grateful that all this is underway. I am also grateful to you for taking such swift action. It will certainly make things a lot easier for many of us.
Thank you again Maz and if there is anything I can do to help please just let me know.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hello from a newby!
Critical illness for ET
One Year On
