Update

[lizzziep]

My platelets are now under 600, just! A big improvement from when they were over 1000 a few weeks ago. Local doctor wants me to carry on with Momelotinib and hydroxy, plus EPO injections. My haemoglobin had dropped from 109 to 98 though, still a lot better than the 75 - 85 it was for a very long time.

My doctor is obviously miffed I contacted Guys when my platelets were over 1000 and he said that was ok, I didn’t think so! He said there is no need for me to be in contact with them! I think there is every need!

I have a phone consultation with them next week, I asked for my latest blood results to be sent to them, he said I should be able to get them on my NHS app, I can’t, hospital results aren’t available, just GP’s. So I’ll have to ask the specialist nurses to send them, that depends on which one answers the phone whether they get them.

I can get all details of any contact with Guys on their My Chart, but getting anything from my local hospital is nigh on impossible.

[Lyndjs]

Thanks for the update. Great to see your platelets are falling. Keep us posted on your Guys appointment, hope it all goes well for you 😊 x

[clematis26 in reply to Lyndjs]

Good For You! We need to be Our Own Advocate - all good wishes!

Sue

[ainslie]

congratulations, sounds good, any doc who is miffed because you are trying to get the best answers to your situation has got it wrong, your health should be his priority not his ego, he should welcome any input from Clair Harrison and Co, everyone knows they are fantastic there.

[Spanelmad]

Great to see your results going on the right direction.I've the same problem with my local heam still miffed with the Guys referral!!! My GP will download the bloods for me and then emails them across to.Guys , maybe yours would be willing to do so?

[lizzziep in reply to Spanelmad]

I’ll give that a try, thank you 😊

[ainslie in reply to Spanelmad]

its pretty common for them to get miffed unfortunately and disappointing

[lizzziep in reply to Spanelmad]

I called in at my GP’s surgery today and they said they don’t get any results or information from haematology. I have no idea why as I am also under another department at the same hospital for something else and they send letters to the GP and copies of those to me.

[Spanelmad in reply to lizzziep]

Is the GP going to.chase it for you?( Your medical records are incomplete at the surgery and that could be dangerous.) Or are you going to have to battle with your heams Secretary?

[lizzziep in reply to Spanelmad]

I’m already armed with a sharp stick to poke the secretary with, that’s if anyone actually answers the phone of course. I’m going to make an appointment with the GP to ask about it. You’d have thought they’d have picked it up. I actually bumped into him a few weeks ago and he asked me about the MF, so obviously he has some info.

[Spanelmad in reply to lizzziep]

Good luck !!!The GP must be getting info from Guys , mine has said that it's very comprehensive and they send him copies of the bloods done there as well.

[Cja1956]

I’m glad you’re getting such great results.

[hunter5582]

Good news on the PLTs. Too bad the doc is letting ego get ahead of patient health. Good docs encourage a second opinion. Expert opinion from a MPN expert team should always be welcome.

[Nerjalover]

Lizzie- you NEED an MPN Specialist! End of!

GPS do not have the required knowledge about MPNs as our conditions are so rare. I cannot advocate this enough - as even specialists who ARE haematologists in other areas ( eg lymphomas) do not have the requisite knowledge. I know this to my detriment as had a heart attack when the wrong medicine was approved!

I insisted on finding an MPN specialist and when I did - he advised he would never have put me on the meds the lymphoma specialist had prescribed.

My own excellent MPN specialist that I have had now for 4 years in Liverpool is not unhappy with me if I wanted to go to Guys to see Claire Harrison- he has told me that! But I have no need as he is an excellent specialist.

If you live in the North of the UK you could ask to be referred to him in Liverpool Clatterbridge Cancer Centre which is where I go. His name is Naumen Butt- he is brilliant along with Rachel Wells who is also brilliant!

Stick to your guns though if you want to go to Guys - you have a choice! Good luck!

[lizzziep in reply to Nerjalover]

I’ll be sticking with Guys.

[RazB]

Hi, you can ask for your bloods taken at hospital to be sent direct to Guys. Either the hosp can do it or your GP surgery can do it when they get the results sent to them. That’s what I do. X

[lizzziep in reply to RazB]

I have had them sent to Guys from the hospital before, I checked with my GP’s surgery today and haematology aren’t sending any results or information tmy GP! It depends which nurse is on whether the results will be sent to Guys when I ask.

[RazB in reply to lizzziep]

How very unhelpful of the hospital. It seems strange (and silly) that all your/our results aren’t logged with the GP?! Such a simple thing for them to do. Good luck moving forward and re your GP not being happy about you contacting Guys…it’s completely up to you who you contact. If the team at Guys are happy to see you then that’s great, they are amazing and you know that they are all the best of the best. X

[lizzziep in reply to RazB]

It’s my haematologist who is upset about me contacting Guy’s, my GP referred me there after my haematologist didn’t/wouldn’t. You’d think he’d be glad of expert advice, he obviously doesn’t know much about the new drugs.

[Birdlady2021]

Hi Lizzziep , so sorry your platelets went over 1000 , I been worried mine shot up to 528 which I thought was high pleased to hear your are going down in the right direction 😀I only deal with the Nurse over phone since lockdown I attend Medway in Kent they do there best like all hospitals they cannot cope all the best to you with guys

[ladyanello]

In Devon, there is a program called Patients Know Best that the surgery can set up that will allow you to see results through your NHS app. I don't know if it's throughout the country but you might check.

[lizzziep in reply to ladyanello]

My local hospital used to have its own app but stopped it a while ago and hasn’t replaced it.

[ladyanello in reply to lizzziep]

That's very frustrating.

[RazB in reply to ladyanello]

I’m in Devon and use that system, it’s excellent. X

[Pogm]

Good news and better news is that you are your own advocate and seek the best care for yourself. My local hematologist was also a little miffed when I sought out a MPN specialist but now is fine with my decision. Continue your pursuit of high quality care!

[liarose]

what medication were you taking before momelotinib. How did you start changing

[lizzziep in reply to liarose]

I was on Ruxolitinib for about 10 months but it didn’t help with my anaemia.

[liarose in reply to lizzziep]

how did you change from one to another. Did you have to change gradually

[lizzziep in reply to liarose]

When I changed from Anagrelide to Rux I took a low dose of both for a month but my platelets dropped too much so then just carried on with Rux, with Momelitinib it was just a straight change, finished Rux one day started Momelitinib the next. Ok, so far except for platelets rising so now on hydroxy as well! Hope that helps.

[liarose]

thank you very much for the info

[nellietheelephamt]

My hospital sounds much like yours with blood test results. I had to apply for my results under a Subject Access Request through the legal department. I did get the results but it wasn't straightforward. I think once I did the SAR, all the forms, witnesses etc etc they realised I wouldn't give up and would get a court order if necessary.

[lizzziep in reply to nellietheelephamt]

It’s ridiculous that some hospitals are so secretive about results, in my case it’s the department, another department I go to send full info to my GP and I can access documents sent to the GP via the NHS app. Haematology don’t (or rarely) pass information to the GP. I had to leave a message about sending the results to Guys as nobody was answering the phone, so they might not get sent. I’m going to ask my GP if he will request the results, then I can access them.

[nellietheelephamt]

You can get a Subject Access Request as I did. The forms for this are often on the hospital website or phone up medical records and ask.

The form I did was 10 pages long, most of which didn't apply, I needed to get my signature witnessed by a professionally qualified person and send in 2 forms of ID. The legal department dealt with the request. If there had been a refusal I would have taken out a court order.

You also need to raise a formal complaint that haemotology are not passing on test results and that could lead to decisions detrimental to your care.

I found that my test results are filed by the department that ordered them so to get a full picture several folders have to be scoured. I now have my results and have charted them - interesting reading and things no one has picked up on as there was never a full picture.

[lizzziep in reply to nellietheelephamt]

Thank you!