I know this probably sounds silly but I feel nervous about my telephone appointment with Prof Harrison on Monday. I still get very anxious about having Myelofibrosis and I'm just feeling unsettled about talking about it to someone other than my own haematologist (even though I know Prof Harrison is the best!). Any of you who have had an appointment with one of the team from Guy's, could you give me a sense of what to expect. To be honest, I'm afraid of hearing something scary or discouraging.
Thanks all, Jennie
Written by
Otterfield
To view profiles and participate in discussions please or .
Hi, Jennie, Since I live across the pond, I can’t get a first-hand information about Dr. Harrison. However, I’ve only heard good things and I think you’re being very smart to get another opinion. If the news isn’t what you expect, at least you know that you’ll be with a specialist who can give you the best care possible.Good luck and let us know what happens. Sending hugs.
I have been seeing Prof H for 5 years for my PV ,receiving telephone consultations during Covid.The Prof and her team all seem excellent and very nice. Try and scan your recent blood results to her,before your appointment
Hello Jennie, I have been a patient of Dr Harrison for years. She is really nice and kind and easy to talk to. Perhaps it will help you if you make a list of questions you would like to ask her. I am so grateful to be under the care of Dr Harrison.
The Proff is brilliant, caring and a really nice person. She has a very good team and you will be in safe hands. It is coming up to 11 years since I first saw her for my ‘second opinion’ and I was comfortable with her within minutes. She is one of the key reasons why I am still on the planet as she helped me towards SCT, which was appropriate path for me. I started buddying for her four months after SCT as at the time ‘they didn’t have any other Myelofibrosis transplantees’ available’ and I attend regional MPNVoice meetings when available. I will continue to do this as long as my treatment is relevant. It is how I can repay her and our excellent NHS. You could not be in better hands!
Entirely understandable that you feel anxious. Prof Harrison and her team are the best. Aside from the fact that they are super kind and they listen, in my experience the care is joined up. The left hand knows what the right hand is up to. Prof runs a tight ship. Personally I find the telephone consults more challenging but because it’s a joined up team I know that I can always e-mail the CNSs or indeed the Prof and I will get a response. You are in safe hands.
Hi Jennie, I echo what others have said about the wonderful Prof Harrison. I have been seeing her since 2016 and she is one of the most reassuring and caring doctors I have ever met, together with being a world leading MPN expert. You will be in the best hands. As for the telephone consultations, due to not having received the text notification advising me that the consultation was over the phone, I embarrassingly showed up at Guy’s in July 2020! Prof Harrison was there and was amazing, said not to worry and I was able to have an in-person consultation in a safe and distanced manner! They also fixed the issue with the text messaging and my subsequent 2 consultations have been over the phone. There is a bit of work involved as I have to get my GP to send me a blood test form, then have to go to my local hospital for the bloods, then get the GP to send me the results, then scan them and send them to Guy’s team before the consult. I don’t know if the professor does any telephone consultations, I have so far only spoken to her team members. Both times they were excellent, very caring, explaining everything, and very reassuring. After discussing the bloods, I ended up having a long conversation over the health benefits of outdoor walks with the lovely doctor that called me last time! They also immediately arranged the date for the next consultation and sent a paper letter detailing the outcomes of the consultation. They can arrange the meds to be delivered if needed. I wish you all the best for Monday, prepare a list of questions in advance as already suggested and I trust you will find the care is excellent. Susana x
Relax! Dr Harrison is brilliant and kind, as well as being one of the world's top top top experts in our field. With Myelofibrosis, we know the news isn't always going to be good; so bad news will inevitably arrive at some point. Dr Harrison and her team are well aware of this. But be reassured that you are under the care of a terrific team.
Expect to hear a soothing , softly spoken person with a sympathetic ear who will ask you in-depth questions. Rest assured you like me are extremely lucky to be under her.
If you stay with her permanently you will be assigned a specialist nurse and you will be given access to various support groups. Including an MPN SUPPORT GROUP
Thank you. Money wise I could probably stretch to London trips but unfortunately MF is exhausting and the journey would be really tough! Ironically I used to live in London but now I'm in the depths of Dorset! My haematologist is excellent though, and importantly, she is willing to admit it when there are gaps in her MPN knowledge. She is happy to take advice from the experts.
Hi Jennie, I’m quite newly diagnosed with ET (6 months now) and this is my first post on this great forum!
I had my first telephone appointment with Prof Harrison’s team less than two weeks ago. You have absolutely nothing to worry about – for me it was very reassuring to be talking to a team who are so knowledgeable about all aspects of our MPN journey. I felt very at ease once the call started.
Based on my experience, what I would suggest would be useful to have ready for your call is a list of your significant medical history (with dates – easy to forget those!), a list of all your meds (possibly with when you started taking them), a list of all your symptoms (whether or not you think they may be related) and possibly some info about relevant family medical history. And don’t forget as other have said your own list of questions and concerns.
As suggested earlier, try and have a copy of your most recent blood results (or any you think are relevant) available too. I sent mine via email to an email address I was given during the call. Not all NHS systems are joined up to share these results (same with my GP and local Haematology dept).
I had a call back the day after my appointment (after my details had been discussed with Prof Harrison) as to next steps. I am visiting Guys’s in a couple of weeks for further tests.
The one thing I did discover is that since I have just reached that milestone of 60 years of age, not only is it considered during treatment plans, it also means that I am eligible for a senior railcard to save on my journey to London! Think that’s a positive ?!!
Hi I can assure you that if it is Professor Harrison you are speaking with she is fabulous as is all of her team. She is really easy to speak with so don’t worry. Hope all goes well for you.
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.
Phone Appointment with professor Harrison
Claire Harrison
Getting Specialist Help 
Referral to Professor Claire Harrison
