Patients' Forum - OXFORD - Wednesday 24th April 2019. 6 - 9 pm (registration from 5.30 pm)

[Mazcd]

We are very pleased to announce that we will be holding a forum in Oxford on Wednesday 24th April 2019, this will be the first forum we have held in Oxford and hope that you can attend.

The forum will take place in The South West Room, Egrove Park, Saïd Business School, Kennington Road, Oxford, OX1 5NY (if using Sat Nav see below)*

You are welcome to attend this forum regardless of where you live or which hospital you attend, if you are prepared to travel to attend then we will be more than happy to see you.

Programme

The programme will include talks from specialist doctors from the Churchill Hospital, Oxford, specialist nurses, patient stories and breakout groups for each MPN where patients can meet in smaller groups to discuss everyday challenges and swap tips and chat with other people who have the same MPN, there will also be a family and friends group, this gives your family and friends a chance to chat to others about how to help and support you and themselves.

Book to attend

You are required to book to attend this forum as we are restricted to numbers at the venue so do need to know who is attending. To book to attend please email [e-mail] and include details of what MPN you have and also the name(s) of your guests and any special dietary requirements you or your guests have, i.e. gluten free, vegetarian. You are very welcome to bring family and friends with you, there is no fee to attend. Complimentary refreshments and a light buffet will be served before/during the forum.

Patient speaker or a family member/friend of a patient - would you like to give a talk at this forum?

Hearing from another patient or family member/friend how they manage and cope with their MPN and the varying symptoms that can affect daily life can be very encouraging, if you would like to share your story with others at the forum please email [e-mail] with details of your talk, please include a contact telephone number, a member of our team will contact you to discuss your talk.

Venue and travel directions – the link will redirect you to the Egrove Park website for travel directions. The venue is situated 2 miles from the city centre and has free, secure, onsite parking.

sbs.ox.ac.uk/about-us/venue...

*Please note if using Sat Nav: using just the postcode will not take you to the entrance of Egrove Park, for Sat Nav devices please use: "OX1 5NZ Kennington Road" to bring you within view of the Egrove Park road signs, or use the precise GPS coordinates: N51 43.614 W001 15.120.

If you are able to display a poster advertising this forum you can download one here... mpnvoice.org.uk/documents/f...

[Rachelthepotter]

Hi Maz. Brilliant: I’ve just applied for tickets and also offered to do a patient experience talk. I’d posted here a few weeks ago that I go to the Churchill now and wondered if I could meet up with anyone else - this looks like a great opportunity.

Rachelthepotter ( MF, diagnosed 2016/17.

[Mazcd Partner MPNVoice in reply to Rachelthepotter]

Hi Rachelthepotter, I've received your email. I saw your post about meeting people but at the time I hadn't confirmed the forum so couldn't say anything, but we are really pleased to be holding one in Oxford, and loads of people have booked on already, so it should be a good one. Maz

[Rachelthepotter in reply to Mazcd]

Hi Maz

Any developements yet on whether my offer to do a oatient experience talk ( I have myelofibrosis) at the Oxford Forum will be taken up? I’d like to, and I’m in reasonable nick at the moment, so I could do it. But I’d like to know as soon as possible so that I can prepare . Let me know what’s happening.

I thought I’d say

How it was - what life was like, and why I got diagnosed

What happened - the diagnosis and starting treatment , finding support from the forum, telling friends and family - the initial stuff we all go through

How it is now

And then I’d be happy to take questions.

But if there are any other things that would be helpful to talk about let me know.

All the best

Rachel

[Mazcd Partner MPNVoice in reply to Rachelthepotter]

Hi Rachel, we have a couple of other people to speak to at the moment before we make a decision, so will let you know as soon as we can. Maz

[Rachelthepotter in reply to Mazcd]

Hi Maz

I may not be fit enough to do a talk later on, and I'd really like to do one at this venue, where I know my way around.

[Mazcd Partner MPNVoice in reply to Rachelthepotter]

Hi Rachel, I do understand, it is in hand. I will continue contacting you about this via email rather than on this forum. Best wishes, Maz

[Rachelthepotter in reply to Mazcd]

Thanks, Maz.

[Brienne]

Hi Maz, many thanks to all who contributed to last night’s forum. It was really helpful for us in navigating this journey. And we now understand the outpatients clinic letters for the first time!