Anglia Regional Support Group - Meetings

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

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Sophie
Posts: 256
Joined: 20 Nov 2008 14:05
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Anglia Regional Support Group - Meetings

Post by Sophie » 18 Jan 2012 17:28

A very successful first meeting was held today in Cambridge - 18th January 2012 - to start setting up a regional MDS support group for the area of Anglia. :)

9 patients and family members got together to establish a steering group which will then decide:
- when to meet regularly for informal chats
- what topics patients would like to hear about for brief talks
- whether to have a buddy system or not
- how to organise local fundraising events - big or small

Addenbrooke's nurse Phyllis Paterson and MDS UK Patient Liaison Sophie Wintrich were there to support this first meeting - but the group will be mainly patient led.
Phyllis and Sophie will be available for advice and assistance, but will not necessarily be present at subsequent meetings.

This folder will be used to post dates, times and venue for future meetings - in the same format as for Oxford and Exeter.

The Anglia Group - Contact & Chat will be used for discussions amongst the members of this regional group.

Well done all 9 of you - John, Peter, Sandra, Heather, Guy, Vicky, Charles, Chris and Richie!! Thank you all so much for taking this on. :D
I now leave the space for one of the group members to post the date of the next meeting here. :geek:
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk

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.
man1city
Posts: 6
Joined: 19 Jul 2010 21:09
Contact:

Re: Anglia Regional Support Group - Meetings

Post by man1city » 19 Jan 2012 07:08

Hi Anglia Gang

This is just really for practice but, in answer to Sophie's post, I think I am right in saying that our next meeting is planned for Wednesday, 8 February at 10.30 a.m. at Scotsdale - Thanks to Peter for getting us together and leading us and to Sophie for travelling up from London to be with us and to Phyllis for your help and encouragement.

It's amazing how sleeplessness can spur one into this sort of action!

Best wishes to all and look forward to being with you next time.

I hope this is not more than 60000 characteristics and that I have room for a geek smilie.
I must now try and organise a profile.

John H :mrgreen: Oh, that's disappointing. I was hoping for a green smilie!!
Age 83. Diagnosed 2008 as RAEB 2 but now am CMML. Wonderfully cared for at Addenbrookes Cambridge, a centre of excellence for MDS treatment/research. Blood transfusions rarely. Very fortunate!
Richie

Notes from 1st meeting

Post by Richie » 19 Jan 2012 16:29

Hi all,

Don't know if this is the right place to post this but I am sure someone will put me right!

I am having to use e mail for the notes from our meeting on 18th Jan as our confuser does not have Word on it. Just to make things clearer I am 99hal520@gmail.com.
Don't know how to get my name in front of the e mail address like normal folk.
Richie Cunnell.

Present at the meeting were the above addressees. (as per e mail distribution; not listed on this post)

Sophie started the ball rolling by giving us a brief on how other similar groups work:-

The MDS UK web site contains a wealth of information about the MDS condition and national/regional group activities. Most groups meet on a regular basis and are usually small scale, informal, gatherings. Frequency and venues for meetings is decided by the group and there are no hard and fast rules. Topics for discussion are normally patient driven. Health Professionals can be invited to give presentations to the group and either Sophie or Phyllis would advise on this aspect.

It was suggested that the group may wish to start a "buddy" system, where existing and newly diagnosed patients, carers or family members can seek support and reassurance by discussing their concerns with a group member. If a group member is willing to offer such support it may well be based on their own experience. Phyllis and Sophie both offerred to match newly diagnosed patients with group members. Clinical advice will never be offerred by the group or any individual member

The general consensus of opinion of the meeting was that we need to be careful of the geographical area to be covered by the group. Too large an area would result in co-ordination of effort becoming an unmanageable task. Conversely many small area groups could mean that helpful ideas and suggestions would not be disseminated widely enough.

It was agreed that we will be known as the Anglia Regional MDS Support Group. If this becomes too cumbersome; things can change.

Now that we have a name it was agreed that another meeting of the group should be held in the not too distant future. Peter asked for suggestions of topics for discussion. The following ideas were thrown into the melting pot:-

1. Guest Speakers.
2. Fund raising events and participation in organized events.
3. Group promotion (e.g. posters in surgeries etc.)
4. Data availability.
5. Guidelines.
6. AOB.
If anybody can come up with other topics for inclusion at the next meeting please let me know so that I can include them in the agenda that I will issue later.

The meeting unanimously decided to elect the following volunteers:-
Chairman - Peter Cornwell
Treasurer - John Heywood
Secretary(ies) - Richie and Chris Cunnell

It was decided that the next meeting will be at The Cambridge Cancer Help Centre, David Rayner Building at Scotsdales Garden Centre, Cambridge at 10.30am on Wednesday 8th February 2012.

Richie Cunnell
1/2 of Secretary
Last edited by Richie on 20 Jan 2012 12:24, edited 1 time in total.
Richie

Re: Anglia Regional Support Group - Meetings

Post by Richie » 19 Jan 2012 16:48

Sophie,
I have posted the notes from our meeting as a New Topic. Mayhaps this is not right. How do I post it in here?
Sophie
Posts: 256
Joined: 20 Nov 2008 14:05
Contact:

Re: Anglia Regional Support Group - Meetings

Post by Sophie » 19 Jan 2012 17:54

Well done John and Richie for posting - great start.
Richie - to post in this folder - you just need to click "Post reply".
Of you click "New topic" it will appear as a separate item in the folder.
I will now move your message to the right folder.

If you all prefer - I can create a totally separate folder for Anglia - where you will be able to post "New topics".
Just let me know - will take me 5 minutes.

Well done!!
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk

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.
Richie

Re: Anglia Regional Support Group - Meetings

Post by Richie » 20 Jan 2012 12:42

Sophie,
Thanks for the assist. I think it will be best to decide at the next meeting where to post our minutes and things.
Richie
P.S. - What is the blue bit under your signature and how do I do it? (As you may have guessed I don't do confuser technology.)


Richie - I have added a note in the first folder on the forum:
About the Forum - PLEASE READ THIS FIRST
That way everyone will see the explanations clearly - you are probably not the only one who is struggling a bit with this :shock: - but you are doing extremely well overall! :ugeek:
Thanks for persevering!! :)
man1city
Posts: 6
Joined: 19 Jul 2010 21:09
Contact:

Re: Anglia Regional Support Group - Meetings

Post by man1city » 25 Jan 2012 16:08

Well doone Richie & Chris - nice to find somebody else struggling like me! We'll get there in the end.

John H
Age 83. Diagnosed 2008 as RAEB 2 but now am CMML. Wonderfully cared for at Addenbrookes Cambridge, a centre of excellence for MDS treatment/research. Blood transfusions rarely. Very fortunate!
Sophie
Posts: 256
Joined: 20 Nov 2008 14:05
Contact:

Re: Anglia Regional Support Group - Meetings

Post by Sophie » 09 Feb 2012 20:37

Anglian MDS Group meeting
Open to all in and around Cambridge area - and patients from other local hospitals in Anglia. Please inform your haematologists, GP's and especially your nurses.

Date:
Monday 30th April

Time:
Start at 10.30am until about mid-day

Location:
The Cambridge Cancer Help Centre, David Rayner Building at Scotsdales Garden Centre, Cambridge

We will post further details information about meeting as soon as possible.

Please contact main office to register- 0207 733 7558
or email mds-uk@mds-foundation.org
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk

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.
Sophie
Posts: 256
Joined: 20 Nov 2008 14:05
Contact:

Re: Anglia Regional Support Group - Meetings

Post by Sophie » 11 Jan 2013 18:08

The next few meetings for the Anglia/Cambridge region are now scheduled.
Next one is on the 21st January 2013 - 10am to 12.30.
Please check our website for all the details, location, map etc

Do come along for this first meeting of 2013.
Many more are scheduled for the next few months - as this is a very active group.

We hope you can attend.

Thank you
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk

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.
Sophie
Posts: 256
Joined: 20 Nov 2008 14:05
Contact:

Re: Anglia Regional Support Group - Meetings

Post by Sophie » 05 Apr 2013 13:10

Next meetings scheduled:

Date: MONDAY 13th May 2013
Time: 10.30am to 12noon

and

Monday 1st July 2013
Time: 10.30am to 12noon

Where: Cambridge Cancer Help Centre, Scotsdales Garden Centre, 120 Cambridge Road, Great Shelford, Cambridge CB22 5JT

We encourage you to attend this friendly group – especially if you have been diagnosed recently – or if would like to get involved in local activities to support MDS UK and raise awareness of MDS in your region.

Phyllis Paterson, the Addenbrooke’s MDS specialist nurse often attends this group too – and can help with brief questions.

IMPORTANT – PLEASE TELL YOUR LOCAL HOSPITAL AND LOCAL NURSE ABOUT THE MEETING.

Full details - please check our main webpage - Patient Meetings - Upcoming:
http://www.mdspatientsupport.org.uk/eve ... -may-2013/
Sophie - Patient Liaison
Queries:
Call 0207 733 7558
Email info@mdspatientsupport.org.uk

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.
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