Failure of proper documentation given by NHS cancer nurses.
As I recently received the mpn voice’s information on ET and was relieved to finally understand this diagnosis I had another look at this nhs patient information by bloodwise.org.uk there is a lack of information on ET in their reading and I suspect that at least two local cancer nurses understandings about the same.
Is there anything I could do personally to fill in the void.
I previously posted about this 😓
There are a lot of science papers online but they are very heavy reading although bits and pieces can help understand what we go through.
MPN research foundation have a lot of information and shortish videos as well, this would be the first place to look.
Sadly even a lot of haematologists don't understand MPN's and close to zero doctors. UK seem to have more access to specialists depending on what district you come from.
Sorry you were given insufficient info by the NHS. Hubby was given the diagnosis & handed the bloodwise book at his diagnosis appointment. We had no idea what he had, I saw blood cancer on the book & cried as we left, he didn't even realise. We were sent on our way to return 2 months later. I read the bloodwise book frantically on the way home to collect our son, it was early evening & we couldn't take time to process it. We'd had no idea what they had been testing for, all we'd been told was it was probably a genetic condition & if positive he'd have to take aspirin everyday. I'd nearly not gone with him for his appointment. At diagnosis they post it marked the important pages they suggested we read. It petrified us & I'd not known what to ask when they asked if we had questions, all I asked was if our son was at risk & I was looked at like poop, "No it's a change in the genes not hereditary" Suffice to say we changed hospitals although sadly the new so called specialist hospital isn't that much better.
We have brought a few books : Myeloproliferative Neoplasms (Fast Facts) which is really good and one that is a US based one that you can buy or download : NCCN Guidelines for Patients - Myeloproliferative Neoplasms.
Both are really good, I use them as references for things that I'm concerned about & then I know what I need to fight for attention with from his Haemo. Or at least we know what he is going through is normal for the condition. MPN voice have great info as you now know & also do a buddy system, info for this is on their website.
My experience exactly. This is your diagnosis and here's a book. every symptom suggested by me 'isn't anything to do with your condition'. Rubbish.
My belief is that the haemetologists and nurses no very little. I can't even get an answer when I ask how many MPN patients mine has, let alone ET, JAK2 like myself.
It's horrible isn't it? It's really knocked hubby's confidence as he just can't see the point in mentioning anything anymore, the last appointment when he said he felt completely washed out ended with the follow up letter saying he'd reported feeling well (& he saw a registrar), they never sit with his notes in front of them nor do they have all his blood results to hand, they just write platelets, HCT & WBC on a scrap of paper. So long as his levels are where they should be in comparison to his age (48) then they don't care. I have lost all faith & confidence in them. All you can do is be the best advocate that we can & I'll fight like whotsit if I see something more concerning in his results. Hope you doing OK x
Sadly, according to those working in testing labs, unless specifically requested the white and red cells are all they test. If I mention symptoms or side-effects, I just get 'see your GP'. Even when I absolutely know they are related to my condition.
Having read about the possibiIy of regression when using Pegasys, I asked about my Allelle Burden at my last appointment (following 18 months of asking nothing due to the responses) and was asked 'why do you need to know that?' He had no idea. I did tell him it would help me, psychologically to know if there was any improvement snce my taking Pegasys. He told me this had not ever been tested because, 'Whatever the outcome my treatment would be the same.'
Thank you for your good wishes, apparently I am doing OK. However, I feel dreadful with severe fatigue, depression and I have completely lost the initiative to help myself. I haven't done yoga, basic exercises or ridden a bike since my diagnosis. My concentration and ability to process simple jobs or activities has been knocked sideways. This is just not me
Re your husband's blood test results, are you aware that the GDPR allows you to receive a copy of all your test results and reports. We shouldn't need to ask. I tried it once and he was so suspicious as to why I wanted them that I neveer asked again. I had them once and never again. Just didn't happen!
That was a long ramble wasn't it? sorry, I got quite carried away.
All the very best. I hope you mange to get to grips with this. It took me a long time. I've learned plenty by doing a lot of research and never expecting any help from anywhere!
All the very best. Big HUG for you and husband.
Hello. I had the exact same experience with my local haematologist and it was really getting me down, I was diagnosed last december and they had me in there every three months only to tell me I couldn’t possibly have any symptoms and as soon as my platelets hit 1000 i’d be in hydroxy. I asked to be referred to Manchester and it was so much better. There is a consultant there who is quite young but MPNs are her specialism and it was fantastic, she really seems to understand ET and looks at the individual and in my case I need no medication and just to be reviewed every six months. If I had symptoms we would think about medication and it would be pegasys in my case (I am 37). if you can get to Manchester I would recommend switching to her. Good luck.
I took a few MPN voice booklets and posters to my local oncology unit ( I go else where) . The sister in charge had never heard of MPNs.
I knew darn well that the treated MPN there because I befriended a PV sufferer at my local gym.
I need to get my hands on more MPNVoice’s booklets and hand them out to a lot of people
I was lucky in the respect that my Haematologist instructed me to check-out MPN Voice and this forum, he also advised my GP to do the same. I rarely go anywhere else for any information.
I have been trying for months now to set up a self-help group in my area but no help is forthcoming due to the GDPR. I totally understand this but would love to be able to arrange something. we would be able to share information, discuss all sorts and generally support each other in every respect concerning our MPNs.
If it just got me back to my yoga, I would be more than happy. All the best. P.
Do you have a locals maggies? We have a haemo group which work well.
Hi Eleanor. I don't quite understand your question. 'maggies'?
Maggie’s are cancer support centres, all over the uk. Have a look for your nearest on in this. maggiescentres.org
Thank you very much for this info. I have searched and the nearest is about 1 hour 20 minutes drive. I will register and see how it goes. Thank you again. All the best. x
I tried looking for help in Northern Ireland I couldn’t see anything for here
Lack of Knowledge from the Haematologists.
Platelets on health program radio 4 yesterday 
UPDATE FOR MPN PATIENTS IN ENGLAND RE:- Fast access to COVID medicines for people with blood cancer
ET new 
