Very pleased to say I’ve got an appointment on 7th November at Haematology at Guy’s London. Thanks to asking my GP to email as the letter via the mail from the haematologist failed to arrive and he didn’t want to send another! GP (locum) was very helpful and did it straight away.
Hopefully I’ll get some good information from them. Getting proper information from the haematologist at my local hospital is like pulling teeth!
I’ve booked my train ticket, hopefully they won’t be on strike that day!
I’ll post what’s said. 😁
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lizzziep
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I hope it helps you as much as it helped me. Professor Claire Harrison was amazing and my care has really moved up and along since then with all her help and advice. Let us know! 🥰👍
Absolutely delighted for you. What a fight though, a bit suspicious about that haemotology referral 🤔.
How lucky you got a locum GP, sometimes that works better. It was actually a locum haematologist who referred me to Guys, think I may have come up against barriers otherwise.
Thank you 😁 I was annoyed (understatement) when haematologist said he’d sent a letter previously and it would get there eventually - didn’t offer to resend. 🤬 I get the impression he thinks I’m an annoying old woman who asks too many questions! ( or maybe he can’t answer them)
You may need to consider transferring your local haemotology care. You’ve got to be able to have trust in your provider, and I wouldn’t blame you one bit at this stage if you haven’t.
Perfect, Lizzie. It's the persistent, "annoying old women" who get the results they need, and deserve. It shouldn't have to be like that but it's your health you're fighting for, against a totally over-stretched, under-resourced system.
I always look forward to my outing to Guy's. Have a wonderful time.
Morning I have same issues with my haematologist she told me to stop reading things and listen to what I am told . But I am told nothing . She is so aggrieved if I ask any questions . I Did eventually get a referral to Guys they were brilliant but handed me back for my continuing care . But still so little communication it is painful so have asked my Gp for a referral he said he is happy to do that and it will be less problematic. Good luck to all
You’d think they’d want the best for their patients, I’m made to feel as though I’m being a nuisance when I ask questions, it makes me wonder if they actually know the answers!
I think congratulations is the right word! You will get a completely fresh perspective from Prof Harrison and a positive plan. Do let us know how it goes. Good luck, Jennie
You could ask for a telephone or ‘virtual’ appointment. I’ve booked my train ticket, and am hoping they’re not on strike that day! There’s an app called Seatfrog that you can use to get cheaper train tickets - of course I wasn’t told about that until a couple of hours after I’d booked! It’s costing me £50 + for the train but hopefully well worth it.
Hi I travel from Liverpool to Guys but not been for around 3 years just telephone consults. The problem I have is for some unknown reason when they ring my mobile goes straight to answer even when I’m actually holding my phone and then I can’t contact them. Saying that I have just been for a face to face appointment recently although it does cost me a lot of money on the train I’m more than happy to pay as they are very knowledgeable and can answer all my queries not like my local hospital who say it’s nothing to do with your blood disorder (chronic neutrophilic leukaemia 6) it’s a very rare one. Thanks for the info regarding train tickets I will check that out next time I need to travel. Good luck on your appointment.
Thank you. I’m going to a seminar in Newcastle tomorrow, I’ve never been to one before. I hope I manage to get an appointment, virtual or telephone as I feel I don’t have any support here. I will check up the Sestfrog site. Thank you for the info, everyone on this forum is very supportive xx
Brilliant I don’t get the conflict between our local Haemotology & Guys. I had same problem & have consultations by phone from Guys yet blood results are never passed onto Guys & no liaison whatsoever between local ones. But at last you have yours very good 👍Julia
That is good news! The Hematology team at Guys is made up of wonderful specialists! I have never actually been seen by Professor Harrison (I think I’m too straightforward a case!) but have always been pleased with the appointments I have had with other members of her team.
Good luck Lizzie I have an appt planned in for 27th - hoping with the Prof, but was wondering about a virtual appt, mainly due to the cost of the train ride from Yorkshire! anyway I will give them a call and see who I am seeing I am at that juncture of having managed my condition with vene and wait n see approach for over 6 years so wouldn't mind considering the idea of interferon but my regular haem' says would have to go through the rigmorole of hydroxy first and then see if that suits etc etc - which is somewhat annoying - the NHS have had a cheap ticket with me until recently - and now they try to palm you off with the low cost options - anyway I shall keep smiling and being pos as we know stress doesn't assist us v well in our endeavour to treat our bodies as the beautiful miraculous creations that they clearly are. I still find it incredible how my body serves me so well under all this duress Big hugs to you all sharing the path less trodden xx
I live in Devon & Professor Harrison always does my consultation by phone. She sounds absolutely wonderful on telephone & so informative & helpful . It was not necessary for me to travel in person & I have received brilliant treatment changing to Interferon . So they are more than happy to phone consultations when we don’t live London. Julia 👍
I’m travelling from Doncaster station, it’s costing me £51.70 return per ticket, that’s with a disabled rail card. Which is more than when I looked at prices in the morning, the price had gone up by the afternoon. My friend is going with me so I have paid for her ticket too. My husband is staying home with the dog!
I’m on peg interferon, injecting 45 mcg once a week - ok - so far. I was on hydroxy for 3 years then developed a reaction to it, then a few years on Anagrelide until diagnosed with post ET MF.
Thanks Lizzzie - the cost is not as steep as I imagined, and I m not much further out (York) so will take a look, and book earlier if I am going to go. It's good that your friend is coming for morale support. I am pleased that you are finding your new meds to work better for you - all the best with your ongoing journey - s'cuse the pun! X
Great news, I bet you feel so much better knowing that you are now under her care. My appointment with her is a telephone appointment which is fine otherwise it would be a long trek from Newcastle Upon Tyne. Good luck.
It is a wake up call for me. I see how privileged we are in Austria that we can call up the hospital and get an appointment with a haematologist without a letter from a GP or any other doctor!
Please write down ALL your questions! Take time to write them down, Inform yourself, put the questions in order, written simply and to the point. Give the doctor a copy if you like. This may save a lot of time and will be easier for you both and will be super time effective! All my doctor loves that.
I’m so happy that this got through for you! All the best
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Big hugs to you all sharing the path less trodden 
Update after Haemo appointment.
Phone Appointment with professor Harrison
Wayhey, finally got a letter! :)
1st Heamotology appointment 
Finally got Ruxolinitib
