Anyone under the MPN specialist team at the Oxford hospitals?

[Na56]

My husband and I both have ET and are considering moving to the Cotswolds area. Do any of you have experience of the specialist team in the Oxford hospitals? If we move to the Gloucestershire area can we still be seen by the Oxford specialist? I appreciate any advice. So much is spoken about the brilliant Guys specialist but I’ve not read anything about the Oxford team. Thank you Irene

[bruddery]

Professor Adam Mead is the main specialist for the Oxford hospitals. I don’t know him at all, living in Ireland, but I know he was doing fantastic research into familial mpns., and his name crops up often when we have outer forums. I used to live in the Cotswolds, and some of my kids were born in Oxford John Radcliffe,, it was a fantastic place then. Good luck with everything. Janice

[Na56 in reply to bruddery]

Thank you Janice and all the best to you. Irene

[Ovingite]

Hi Irene,I went to an MPN forum at Oxford hosted by Prof. Mead about 3 years ago. I was very impressed by the whole Oxford team and both their in depth knowledge of MPNs and the way they interfaced with MPN patients.

I live in Buckinghamshire and have ET, which is currently under control, but if it progresses to something more serious I plan to get referred to Prod. Mead and his team.

John

[Na56 in reply to Ovingite]

Very good to hear John, Thank you Irene

[Wyebird]

hi, I participated in a covid/ MPN/ MRI SCAN patient trial. I travelled to Oxford and went to the MPN clinic on two occasions. I’d have no problem being under them.

[Na56 in reply to Wyebird]

That’s good to hear. Thank you Irene

[Scaredy_cat]

Re can see Oxford team if you live in Gloucestershire..you'll need to ask the possibility especially gp

[JV4E]

Hello, I live in Oxfordshire and have been under the care of the Oxford Team since 2009. I have personally seen Prof Mead on a number of occasions and he is excellent. The rest of the MPN team are also great and my CNS Caroline is really good at responding to my many queries . They are based at the Churchill Hospital in Oxford . I feel very fortunate to live in this part of the country where there are some great MPN Specialists 😊

[Na56 in reply to JV4E]

Thank you for this information. Can I ask were you automatically referred there or did you have to request a referral? Thank you Irene

[JV4E in reply to Na56]

I was referred by my GP after a couple of blood tests showing something was wrong with my platelets, turned out I had ET . The Churchill is my local hospital which fortunately even back in 2009 had an MPN specialist . Maybe if you live in Gloucestershire rather than Oxfordshire you could ask your GP to refer you to The Churchill ? Good luck with your move !

[Na56 in reply to JV4E]

Thank you Best wishes Irene

[Itch]

hi, I can highly recommend Prof Mead & his myeloid team at the Churchill. I go there, but my local hospital is haematology at the Royal Berkshire. I’m sure if you make a specific request it may benefit you too! All the best

[Na56 in reply to Itch]

Thank you very much for this information. All the best to you Irene

[Katy121]

I am also under Prof Mead’s team at the Churchill and they are excellent. I am local to Oxford and am very lucky to have them to manage my care. I was diagnosed in 2010 and was on the watch and wait list for 10 years and started active treatment nearly 3 years ago. They keep a very close watch on me and if I have any queries, I can contact my haem nurse, Caroline. It is also nice to know that Prof Mead is an expert on MPNs and so aware of new treatments etc. Hope the move goes well!

[Na56]

Thank you very much for this information. All the best to you Irene

[Rachelthepotter]

Hi. I was under the care of the Oxford team for a while (I have PMF inter2) and I absolutely agree that the Australian CNS, Caroline Allman, is outstanding. I was less happy with the care I got from Prof Adam Mead, as he upped my dose of rux from 15 mg twice a day to 20 mg twice a day, and ignored the resulting sarcomatoid SCC on my face. This was 5 yrs ago - might be more skin cancer aware now.

Good luck - would be interested to hear how you get on.

Rachel

[Na56]

Thank you Rachel and I hope that all is going well for you now. Kind regards Irene