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This is our annual information meeting for MDS patients, family members and friends.
Please do tell your local haematologist and nurses about this event
– and encourage them to tell their patients about it.
When: Friday 2nd October 2015, 10.00 am to 16.30 pm
Sandwich lunch will be served.
Where: Beech Suite, Lancaster London Hotel, Lancaster Terrace, London W2 2TY
Dr Dominic Culligan from Aberdeen Royal Infirmary in Scotland will deliver a general presentation on MDS, update us on new treatments and answer your questions.
He will also give a detailed update on current and future Clinical Trials in MDS.
Clinical nurse specialists Janet Hayden and Geke Ong from King’s College Hospital, Shahnaz Hama from Nottingham University Hospital and Phyllis Paterson from Addenbrooke’s, Cambridge will facilitate our Quality of Life discussion.
Provisional Agenda (times and order of the day may change slightly):
Download agenda in PDF: London Forum Agenda 2Oct2015
10.00 – 10.30am Welcome and registration process
Book your questions opportunity
* Tea/Coffee *
10.30 – 11.00 Introduction to MDS UK activities
Sophie Wintrich, Chief Executive, MDS UK
Rodney Taylor, Chairman, MDS UK
Monika Janosik, Project Worker, MDS UK
Q&A; Mindfulness; Survey update
11.00 – 12.10 Diagnosis, Treatment and Clinical Trials update
Dr Dominic Culligan, Haematologist
Aberdeen Royal Infirmary, Aberdeen
Incl 15 min Q&A
12.10- 12.25 Nurses update on MDS news and Quality Of Life studies around the globe from the recent MDS Symposium May 2015
12.25 * Lunch *
13.10 – 14.30 Q&A/Patient Forum Discussion – Quality of Life Session
Janet Hayden, CNS – Geke Ong, CNS – Phyllis Paterson, CNS
* Tea break and split into groups (15min) *
14.45 – 16.00
Group 1 – Stem Cell Transplant
Q&A
Janet Hayden, CNS; Shahnaz Hama, CNS; Russell Cook, Patient
OR
Group 2 – Fatigue & Supportive Care
Q&A
Geke Ong, CNS; Phyllis Paterson, CNS; Kes Grant, Patient
16.00 – 16.30 Regional groups update & Mindfulness exercise
This meeting is free of charge and open to MDS patients and their guests.
Patients and their families will have the opportunity to share experiences and participate in the informal discussion regarding their quality-of-life issues living with MDS.
For more information or to reserve a space, please contact the main office:
Tel: 020 7733 7558
Email admin1@mdspatientsupport.org.uk
Feel free to send us your questions ahead of time – this will help us plan our talks.
Please specify any dietary preferences:
Vegetarian
Neutropenic diet
Gluten free
