UPDATE: Would You Like to Have a Patient Led MPN Support Group in Devon and Cornwall?

[Echocat]

UPDATE: Thank you everyone for your replies.

At the moment our meetings are about organising the patient led support group as opposed to being actual support meetings themselves. However we hope to have them running in the not too distant future.

If any of you, including any of you who have not yet replied, are interested in being involved in this organising stage of things then please contact one of the following staff members at Derriford Hospital. They would also like to hear from you in order for you to register your interest in any support meetings once things are up and running. Alternatively you can continue to reply me here on this site.

[e-mail]

[e-mail]

Our next meeting is arranged for 11.00am on Wednesday 20th March 2024

at the Mustard Tree Meeting Room, Derriford Hospital Plymouth.

For information about our first meeting please see my original post below.

Original post: 18.01.24.

Hello everyone. Yesterday a few of us were invited to meet at Derriford Hospital, Plymouth, to discuss the possibility of setting up a patient led support group for MPN patients in Devon and Cornwall. In 2022 I was diagnosed with ET and yesterday's meeting was the first time I'd met anyone else with an MPN; yet, the number of us in Devon and Cornwall with these conditions runs well into the hundreds. As I'm sure you can imagine things are at a very early stage, but; in the first instance, I agreed to post a message here to gauge what interest there might be among MPN Voice members for a group in this region. Please note: although we met at Derriford patients of other hospitals would not necessarily be excluded.

Your thoughts, and interest level, regarding a support group, as well as any suggestions from those in other areas of the country already running such groups would be very welcome, I look forward to seeing your replies. Thank you.

[dd21]

Hi. I’m in Jersey, but would be pleased to hear about any future activity.

[Echocat in reply to dd21]

Hi dd21, thanks for your reply. Things are very much in the planning stage but if possible would you be interested in joining a meeting virtually? The specialist nurse at Derriford, is facilitating things at the moment and I will post an update here next week.

[JuliaR]

I live just over the border in Cornwall and am under Derriford’s care. I would definitely be interested in being part of a support group.

[Echocat in reply to JuliaR]

Hi JuliaR, thank you for your reply. In the future we hope to arrange meet ups in different places, so we are not planning on a group which is limited to meeting in Plymouth. I will post an up date next week.

[Purplegrape]

We’re moving back to Devon later in the year. My husband has MF and would be interested.

[Echocat in reply to Purplegrape]

Hi Purplegrape thank you for your reply. We are at a very early planning stage so once we have established the level of interest and things are up and running you may well be back here. I'll post more information next week.

[champ30]

Yes I would be interested I live in Exeter and under RDE hospital .I have MF.

[Echocat in reply to champ30]

Hi champ30 thanks for your reply. Currently the specialist nurse at Derriford is facilitating things but we have no plans to limit those attending events to being Derriford patients. We are thinking along the lines of probably having meetings in different places. I will post an update next week.

[MWxxxx]

Hi. This seems like a really good idea. I live in Cornwall and although I don't travel very much and still not very keen on meeting groups of people in person, I am certainly interested in any forming local support groups, even if I can just tap in remotely from time to time. I have PV and my condition is also managed at Derriford Hospital.

[Echocat in reply to MWxxxx]

Hi MWxxxx, thanks for your reply. Two people at our meeting last week were from Cornwall. If things go as planned we hope to have meetings in different areas. I see no reason to prevent people joining in remotely if that is what they prefer. However I know depending on the platform there can be costs involved in running meetings with multiple on line participants. I will post an update later next week.

[MWxxxx in reply to Echocat]

Thank you. Yes, please keep me in the loop. If I can make it in person I will do and I would certainly be interested in being involved if I can be.

[Hat3]

Yes, I would. I live near Tavistock and am also looked after by Derriford.

[Echocat in reply to Hat3]

Hi Hat3 thanks for your reply. Things are at a very early stage of planning so all ideas are being considered. Il post an update next week.

[Trueblue8]

I would be interested. I live in Brixham and I'm under the care of RD&E for ET JAK2 pos. Thanks

Ian

[Echocat in reply to Trueblue8]

Hi Trueblue8 thanks for your reply. We are hoping that any group set up will be regionally based and not linked to any particular hospital. We are hoping that perhaps meetings can be held in different areas. I will post an update next week.

[Whatsisname]

Hi Echocat, I live near Falmouth and have had PV for nearly 10 years. I don’t know anybody in Cornwall ( or anywhere else for that matter) who has an MPN, so would be interested in hearing about a support group at this end of the peninsular. My consultant is at Treliske. I would add that this forum is my main source of info, apart from the internet.

[Echocat in reply to Whatsisname]

Hi Whatsisname thanks for your reply. Two people at our meeting last week were from Cornwall. If things go along the lines that we are thinking then one plan is to have some meetings in different places. I'll post an update next week.

[MsLadyAnello]

I am moving to Devon in May and would be interested. I have PV, diagnosed in 2006.

[Echocat]

Hi MsLadyAnello thanks for your reply. As things are at a very early stage in planning you probably won't miss much between now and when you move. I'll post an update next week.

[KernowBlue]

Hi Echocat. I would also be interested if there was a support group/meetings in Cornwall closer to where I live. I’m in Truro & see a consultant at Treliske Hospital.

[Echocat in reply to KernowBlue]

Hi KernowBlue, thanks for your reply. I will be posting an update very soon, there are several people in Cornwall interested.

[redvanman]

Hi Echocat I'm in S.E. Cornwall and have been under the care of the wonderful Haematology department at Derriford for about 17 years now .. I am jak2 positive PRV and would definitely be interested in a local support group meeting. Redvanman.

[Echocat in reply to redvanman]

Hi, redvanman thanks for your reply. I se several people in Cornwall are interested. I'll be posting an update in a couple of days.