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CLL Patient Group Meetings
Regional meetings and Regional News.
If you are wondering why we initially ask you to
contact the CLLSA for meetings, or arrange indirect contact with
members in an area, it is for two reasons. Firstly, we protect your
privacy. Once you have contacted another member, subsequent
communications are arranged between the two of you. The second reason
is the Data Protection Act.
We will do our best to give notice of the full
details, please contact us so that we know how many people to expect
for catering numbers.
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Meetings - Keeping other people safe.
Please be very aware that if you could be infectious then as
a matter of health and safety, you should not be putting other
CLL patients at risk.
If you have any doubt, then please ask a medical practitioner before
you come to any meetings with other CLL patients .
Here are some of the symptoms that mean you are infectious and
should not expose other people who are immune suppressed- that is at
least half the people at a patient meeting.
-
Vomiting or Diarrhoea
in the last 48 hours
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Active respiratory infections – cold, sore
throat, cough
Do not come if you have shingles, you are
infectious until the last blister has healed over.
Do not come if you suspect that you have any infection or condition
where you are releasing germs that may infect others. We have
published many ways to protect yourself, for example
http://www.cllsupport.org.uk/selfhelp.htm and
it is
common decency to extend this courtesy to others.
As an alternative to the meetings, we offer several ways to
communicate with trustees and others with whom you can share your
experiences.
We thank those of you who did not come to the
meetings when you knew you could be putting others at risk.
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PLANNED MEETINGS:
OXFORD MEETING 16th MARCH
2012
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Please be aware that the
Oxford Meeting is now full but if members wish to be
added to a waiting list please contact the trustees'
Personal Assistant at
trustees.pa@cllsupport.org.uk, Telephone the Free
phone membership line, 08009774396 and leave a message,
or write to CLL Support Association, 39-40 Eagle Street,
London, WC1R 4TH. |
We
would like to invite you to a Members' meeting of the CLLSA at:
The
Oxford Belfry, Milton Common, Nr Thame, Oxfordshire, OX9 2JW
16th
March 2012, 10:30am to 4:00pm
The main purpose
of all the patient meetings is for you, the patient, carer or
friend to meet other people with CLL, and to exchange
experiences.
We are fortunate
to have Dr Anna Schuh as a guest speaker. Dr Schuh MD, PhD, MRCP,
FRCPath is a consultant haematologist in Oxford with a
specialist experience in CLL.
Details of how
to get to The Oxford Belfry are attached. We are looking into
providing transport from Oxford, Didcot Parkway and Hadenham and
Thame Railway Stations.
The full
programme will follow, but we would appreciate it if you would
tell us now if you would like to attend as we need numbers for
catering.
Please contact
the trustees' Personal Assistant at
trustees.pa@cllsupport.org.uk., Telephone the
Free phone membership line, 08009774396 and leave a message,
or write to CLL
Support Association, 39-40 Eagle Street, London, WC1R 4TH.
REPORTS ON PREVIOUS MEETINGS:
Brentford, Middlesex Meeting 19th September:
Our second
autumn meeting at GSK house was attended by many enthusiastic
people. Many thanks to GSK and especially to Philippa Manning
who did the organisation at that end - it all went incredibly
well.
It can be
daunting to arrive at the headquarters of a global
pharmaceutical company with the present level of security alerts
in place- but the security people, and all the GSK staff, were
inevitable courteous, and we all got in to the meeting.
The
premises are beautiful and huge - there are full sized trees
growing in the auditorium, and a water feature bigger than a
house.
Attendees
soon settled in to chat, and the meeting got smoothly underway.
In a
departure form our usual meeting format, we had three people
with experience of different aspects of CLL to answer questions
from the audience. Nick York shared his experiences of being
newly diagnosed and watch and wait-Margaret Bisshopp some of her
insights on being a carer, and Garry Bisshopp talked on immune
complications of CLL.
The
feedback was very positive, and I believe that as an occasional
departure from the ‘expert speaker’ this worked very well.
Thanks
again to the members who suggested this activity.
Thank you all for coming,
thank you for your feedback, we have taken note of the
occasional hiccup and will try and get them put right.
Southampton Meeting - Drug Trials and You - 15th July 2011
There were just over 50 people at the meeting on July 15th.
Dr Duncombe, the speaker, is an expert in CLL drug trials. Drug
trials build on the best treatment available for a specific type
of CLL patient, you never get a placebo treatment. The standard
of care given to the patient who takes part in a drug trial is
extremely good.
Often, drug trials will allow the doctors to give drugs that
are known be effective in CLL that are not available on the
NHS. If you are coming up to treatment and want to consider a
trial, read the
CLL
Trials Newsletter. Then ask your own consultant for a
meeting with a doctor at your nearest trials centre.
After a splendid lunch, the attendees divided themselves into
groups to discuss CLL based topics that were concerning them.
We can’t solve all our own problems, but the general opinion
was that everyone discovered points in common with other CLL
patients or carers, and went home feeling that there were areas
of their CLL they could not manage better.
Many thanks to Ms Dashwood, Haematology manger, who organised
this event; to Wayne, the technical support manager for being
both helpful and mega competent; to Dr Duncombe and to all of
the Trials patients who turned up to help and give us their
experiences, particularly Mr Oliver who got into the hot seat
and allowed us to ask questions.
We are planning a repeat of this meeting in 2013.
JB.
Midlands Meeting 2011- 25th May
A full 60 members
came to the Midlands meeting on the 25th May to
listen to Dr Ben Kennedy give a brilliant talk on some of the
latest thinking on CLL. Both new attendees and the members who
are now regulars agreed that this was a thoroughly enjoyable
meeting. The weather was fine, the venue was friendly, and we
all had a great time even though we were meeting to discuss the
illness that affects us all.
Thanks to everyone who came – you all helped to make this an
event to remember- and especial thanks to Tricia Gardom for once
again organising the meeting.
A successful meeting
of the CLLSA was held GSK
House on
21st
September 2010.
Every meeting that we have, I come away
thinking that it was the best ever of a whole run of great
meetings.
The GSK meeting was the same. The organisation was nearly
faultless ( we now know about the glitch with the buses,
apologies), the food was great, the speaker, Professor Catovsky, was brilliant and so practical.
Here is the
link to his presentation. The building was impressive,
and so well set out.
Most of all, thanks to you all, the members and friends, who
showed up and took part. We had the biggest attendance ever,
and a waiting list. I've asked GSK if we can have the same
venue next year- I think that we can. So huge thank you to
GSK as well, who gave us the venue and Phillipa Mallaband
who organised everything for us.
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