MPN specialist Claire Harrison

[Wilbob]

Hello everyone

I don’t know if anyone can help,I was diagnosed 4years ago with PV Jack 2 & taking hydroxy & Asprin. I’m anaemic & am due a venesection next Monday. The medication I’m on doesn’t seem to be working as my bloods are all over the place. I was referred by my Haematologist in June this year to see a specialist at Guys & St Thomas London but have not heard anything back. My haematologist said there was no guarantee when they reply that I will have an appointment with Professor Claire Harrison but this would be my choice. Does anyone have a helpful email or phone number for Prof Harrison that I can chase for an appointment please. Thank you all so much 😊

[Otterfield]

I have had telephone appointments with three of the team at Guy's (including Prof Harrison) and they are all excellent.

[Wilbob in reply to Otterfield]

That’s good to know thank you.

[ainslie]

I am surprised and sceptical that Guys / CH would not reply in that time, maybe they didn’t get the request, others on here have had similar communication issues, definitely contact Guys and ask.

[Wilbob in reply to ainslie]

I will thank you I wasn’t sure how long a referral would take.

[Ebot]

Hi there. I’ve been under Prof Harrison’s team at Guys for more than a decade. Over that time the department has got increasingly busy and the team much bigger. It also seems to be becoming less efficient. I was expecting a fast follow up for some pre trial tests but have heard nothing a month on. And there seem to be ongoing issues with processing blood samples (labs rather than Dept) which has lead to longer waiting times in clinic. When I started I regularly saw Prof but she seems much less in evidence these days.

Having said that, her team are excellent and more importantly, joined up. Great CNSs too. Moreover, if I want to get her opinion on something I can. There are really good people on Prof’s team - everyone is generally very responsive and supportive. Not surprisingly she attracts the best. It is the epicentre of MPN practice! So, I would chase the department (see Guy’s website) and also not worry about who you get to see. All the best.

[Wilbob in reply to Ebot]

Thank you so much for your reply, I have other medical issues & unfortunately I am finding delays & busy departments in all the hospitals I attend. Knowing all the team at Guys are supportive & dedicated is really reassuring & I feel much more relaxed about who I see thank you. All the best to you too

[lizzziep]

I’ve just been in the same position. My haematologist said he’d written but they said they hadn’t received anything from him. So I contacted my GP, told them I wanted to be referred, that was the Friday afternoon, he emailed them immediately and they emailed me Monday with an appointment. I went last week and saw one of Professor Harrisons team, Dr Faisal Amin. My next appointment with them is via telephone. They are having problems with the blood test results from the lab, the system has been changed and what used to take 20 minutes now takes hours! I got a lot better information from him than my local doctor. He is going to discuss my case with Professor Harrison and will phone me.

If you do go there the hospital map looks as though their department (Tabard Annexe) is in a separate building but it’s not, you go in via the main entrance and it’s not far from there.

[Wilbob in reply to lizzziep]

I’m so glad you had help from your GP & have had an appointment, unfortunately my GP did not want to get involved & said he wouldn’t help. I am having a venesection on Monday at my local hospital so I’m hoping the department will give me a copy of the referral letter & I can email that to Professor Harrison’s department. I’ve now got some contact details thanks to the lovely people on this forum. Thank you so much for the directions at the hospital, I hope to be using them soon 😊

[lizzziep in reply to Wilbob]

I have to say it was a locum GP who sorted mine out! Fingers crossed you get an appointment soon. 🤞

[Yanico]

Here is the contact for her Secretary

Contact

Secretary: Basit Rahim

Phone: [phone]

Email: [e-mail]

[Wilbob in reply to Yanico]

Brilliant thank you 😊

[Leighcox85]

iam under Claire Harrison and iam going be honest up until recently they were fantastic but a lot of the team has left and the replacements are no where near as good as the doctors that left they don’t respond to emails they miss appointments so it doesn’t surprise you haven’t heard back unless your on to them constantly nothing gets done and I hate saying this because my previous doctor was amazing donal maclornan iam about to go through sct and even my transplant team can’t get them answer them good luck

[Wilbob in reply to Leighcox85]

thank you for your honesty & I’m really sorry that you’re struggling to get a response from the team. My current haematologist contacts me every few months & although my blood results are getting worse not a lot is ever done. I just feel I need a specialist to advise me now so I’ll start doing some chasing with my referral & fingers crossed I can get somewhere 😊 Sending lots of best wishes to you

[mhos61 in reply to Leighcox85]

I’m so sorry to hear of your plight at such a crucial time in your healthcare.

I quickly looked up Dr Donal McLornan and noted he is now at University College London Hospital. As you had such faith in this Consultant/Patient relationship it might be worth considering a transfer to his care.

My husband has an absolutely amazing Rheumatologist who moved hospitals in the past. Without hesitation we contacted his secretary at the new hospital and requested a transfer. He duly accepted, thank goodness, because when you have great care it makes such a difference.

[mhos61]

I receive ‘shared care’ with Guys. I requested this with my local haemotology team.

My first consultation at Guys was with Professor Claire Harrison. I discussed my relevant concerns with her. She was exceptional and requested tests which I had never had with my local haemotology team, such as EPO, LDH and Allelle burden percentage. I felt I had been listened to.

I have telephone consultations with Guys which absolutely works for me, as I live in Nottinghamshire, and my disease is indolent/stable. Of note, I have had consultations with different consultants at Guys, but all have been professional in their field.

Good Luck

[Wilbob in reply to mhos61]

That’s great to know, thank you for your reply. Following all the positive posts I received a consultation with any of the team at Guys would be great.

[MWxxxx]

Hi. Yes I am in the same position. I was referred back in June too because my PV is not well controlled. I have chased up with my Haematologist 3 times since then. On my last appointment I asked them to chase and come back to me straight away to let me know that the referral had arrived. I've still heard not heard anything. I am now beginning to regret being so understanding and not pushing and I am wondering if they just send off something in the post and never chase it up.

[Wilbob]

I’m sorry you’re in the same position, it’s so worrying when we know that we need more specialised help with our PV & it goes on months. I’ve got an appointment for a venesection on Monday at my local hospital where my haematologist is based, so I’m hoping the nurses can give me a printout of the referral whilst I’m there & then I can hopefully chase an appointment. I don’t know if it’s just me but everything regarding my health is such a fight recently. Good luck with your referral I hope you get an appointment soon.