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This is our first Manchester 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.
If there is sufficient interest and patient attendance, we hope to repeat this Manchester Forum on an annual basis.
We also hope this Forum will lead to a set up of the new regional Manchester MDS group, that will aim to meet every 3-4 months – for MDS patients and family members in North-West of England.
– either at the hospital or in central Manchester – to be determined by preference of all attendees.
When: Saturday 7th November 2015, 10.00 am to 16.30 pm
Where: Education Centre (Department17), The Christie NHS Foundation Trust, Wilmslow road, Manchester M20 4BX
Sandwich lunch will be served.
Dr Mike Dennis will be present, as well as Jo Tomlins, Haematology CNS at Christie’s and clinical staff from other local hospitals
There will be a general presentation on MDS and an update on new treatments approaches and clinical trials.
Clinical nurse specialists will moderate the Quality of Life session.
This will be an opportunity to discuss any thoughts, queries and exchange experiences.
Detailed Agenda (to be confirmed):
Please feel free to suggest some topics you really want to hear about if the current agenda does not cover it.
Suggested agenda:
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 MDS Diagnosis, Treatment and Clinical Trials update
Speaker TBC
Incl 15 min Q&A
12.10- 12.25 Nurses update on MDS news and Quality Of Life studies
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
Led by the nurse specialists, and Sam Tasker, patient
OR
Group 2 – Fatigue & Supportive Care
Q&A
Led by nurse specialists and physiotherapists
16.00 – 16.30 Regional groups discussion for the area
Led by Sam Tasker, Sophie W, Monika J and any clinical staff wishing to be involved
See our Support Group Guidelines for this session open to all.
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
