Oxford Regional MDS Group - chat and greetings page

A place to advertise your regional meetings, get togethers, formal or informal - so that others can find you - and you can post updates.

Moderator: Steering Committee

sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Oxford Regional MDS Group - chat and greetings page

Postby sophie » 01 Feb 2013 15:58

Dear attendees of the Oxford group - please use this page to chat amongst yourselves - if you want to keep in touch and plan events.
Meetings will be posted in the other page entitled Oxford Regional Group - Meetings.

Thanks for your help to keep this forum tidy and well organised - so that messages are easily found for all the newcomers.

If you need any assistance, please always email me on the official email address:
mds-uk@mds-foundation.org
Thank you
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
ClaudiaRichards
Posts: 13
Joined: 20 Sep 2012 19:11
Contact:

Re: Oxford Regional MDS Group - chat and greetings page

Postby ClaudiaRichards » 09 Feb 2013 11:35

To all members of the Oxford Regional MDS Group and their friends/families

If you are free on FRIDAY, 15TH FEBRUARY, Gwyn and I will be meeting for a pub lunch at 12.30 at the Leathern Bottle in Lewknor (www.theleathernbottle.co.uk), just a stone’s throw from Junction 6 of the M40, and would be pleased to see any of you who would like to join us for a sandwich or a traditional pub lunch.

If the weather is good, we might also go for a walk afterwards - this is entirely optional!

Best wishes
Claudia
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Oxford Regional MDS Group - chat and greetings page

Postby sophie » 21 Mar 2016 17:17

Dear all,
it was really good meeting everyone again at this regional group for the Oxford region.
Great to see some new faces, as well as the regulars :)

It was a really useful discussion on the benefits of attending such a group - for both regulars and new patients - and family members.
I suggested that the group ought to write a brief summary of each meeting - so that it can be read by those unable to attend.
Something factual - without any personal details of attendees.
For example - we discussed how to spread the word about groups generally - and had a few suggestions:
    Writing about the group and posting on Facebook, or our website, or our newsletter.
    Telling your local nurse how the group is helping you.
    Inviting your local nurse to one of the meetings
    Wearing a MDS T-shirt to your local hospital out patients appointments - and seeing if other patients come to you.
    Making sure your local hospital is aware of all meetings - and has posters to display.

The Cambridge group has been writing minutes of meetings for a long time - and they are really useful to keep everyone up to date.

Help us help you to make others aware of attending local groups.
Thank you!!
And feel free to make suggestions - always!
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
ClaudiaRichards
Posts: 13
Joined: 20 Sep 2012 19:11
Contact:

Re: Oxford Regional MDS Group - chat and greetings page

Postby ClaudiaRichards » 06 Oct 2016 12:31

Update on 2016 Meetings

Although both the June and September meetings of the Oxford group were attended by just a few patients, on both occasions new members were made to feel very welcome and were given an opportunity to express their concerns and to receive support and reassurance from others who understand something of the challenges facing all those living with MDS.

In June we met as usual at Maggie’s at the Churchill Hospital and had Kirsty with us. As there was a newly-diagnosed patient at the meeting, Kirsty spent time going over his diagnosis and treatment in greater depth than had been the case at his regional hospital. He and the relative who came with him appeared to be greatly reassured by the information they received and the terms in which Kirsty explained things. Coincidentally, two other patients who attended turned out to have much in common with one another – one had a successful SCT transplant nearly 2 years ago and the other is due to undergo the same procedure in the near future. They had had an opportunity to chat before the start of the meeting, something which is unlikely to have happened in a clinic setting, for instance.

In September, in the absence of a speaker or a specialist nurse, we met for brunch as an informal get-together away from the hospital. Two new members attended on this occasion and – coincidentally – found that, aside from their MDS, they had another diagnosis in common! Once again, they were able to exchange information and also found it a useful and positive experience to meet others who have been living with MDS for a length of time. We also took the opportunity to discuss possible future topics for our meetings, how we can raise awareness of MDS in the wider community and upcoming fundraising and awareness-raising events.

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