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Missed the Harrogate MDS Patients & Family Forum? Catch Up Online!

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Patients and their families heard about the latest in MDS research and treatment

The latest MDS UK Patient and Family Forum took place in Harrogate on Friday 22nd March.

It was an invaluable opportunity for those affected by MDS to hear about the latest developments in MDS research and treatment.

The meeting was open to MDS patients and their guests, as well as clinical staff. Patients and their families had the opportunity to participate in informal discussion regarding their quality-of-life issues, new clinical trials, new diagnostic methods, therapies and treatment options.

The day also included presentations by MDS experts, guest speakers and patients. The list of speakers included Prof David Bowen, Consultant Haematologist, St. James's Institute of Oncology, Leeds, Dr Simone Green, Castle Hill Hospital, Cottingham, Hull and Dr Anjum Khan, St. James's Institute of Oncology, Leeds, among others.

MDS Patient Support

Read The 2019 Forum Presentations with the Latest News on MDS

New advances in MDS & emerging treatment options by Dr Catherine Cargo

  • Advances in understanding MDS genetic biology
  • How can this help in the diagnosis, risk assessment & treatment?

Download PDF

Clinical Trials in MDS by Dr Simone Green

Which clinical trials are open to recruitment in the UK? What are their aims?

Download PDF

What are Myelodysplastic Syndromes and what are their current treatment options by Prof. D. Bowen

  • What is MDS?
  • What are the goals for treatment?
  • How do we treat MDS in the UK in 2019?

Download PDF

The European MDS Registry - by Dr Catherine Langton

What is a Registry Trial? How can it improve the lives of patients?

Download PDF

Following our Harrogate Patient Forum, we had several attendees interested in helping us start a local MDS group for Yorkshire.

If you are interested in joining this group, and contributing, please contact us on info@mdspatientsupport.org.uk .

We also had requests, and interest to start a local group for Newcastle, which we will look into as well.

Again – please contact us if interested!

Don't miss our next Patient and Family Forum! Contact us to get invited. Telephone: 020 7733 7558 Email: info@mdspatientsupport.org.uk

A New Edition of the MDS Patient Handbook is out!

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Being diagnosed with myelodysplastic syndrome (MDS) can be a shock, particularly when you may never have heard of it.

MDS UK has now produced a new edition of the MDS patient booklet, created in cooperation with our colleagues from Leukaemia Care and Bloodwise.

At MDS UK, we felt there was an urgent need to revise the existing information material. We wanted to ensure that as many patients as possible would benefit from this in-depth booklet, and hence asked those two great organisations to join us in this project. It is highly necessary and beneficial to all patient groups to work together whenever possible, and save valuable funds that way.

This booklet has been written by Dr Sally Killick, Consultant Haematologist; Dr Dominic Culligan, Consultant Haematologist; Philip Alexander, Counsellor and Cognitive Behaviour Psychotherapist; Geke Ong and Janet Hayden, Clinical Nurse Specialists; and peer reviewed by Professor David Bowen, Honorary Professor of Myeloid Leukaemia Studies and Consultant Haematologist, St James’s Institute of Oncology. The booklet has also been reviewed by patients and we are grateful to Chris Dugmore and Claudia Richards for their valuable contribution.

The booklet has been written to help you understand more about MDS. It describes what they are, how they are diagnosed and treated and also the expected outcome (prognosis). It also provides information on coping with the emotional impact of an MDS diagnosis.

New Edition! Learn more about MDS with Our MDS Patient Handbook

Download the new booklet

If you wish to obtain a copy of the booklet please click here or contact us by email or telephone:
admin1@mdspatientsupport.org.uk or 020 7337558

A stock of booklets is also available at all of our local group meetings.

Have you ever visited an MDS Specialist Centre?

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Watch Prof Bowen Video on MDS Centres of Excellence

In the third in a series, Prof. David Bowen – Consultant Haematologist at St James University Hospital, Leeds - talks with Sophie Wintrich about what seeking an MDS specialist opinion can do for a patient and how MDS Centres of Excellence work together with local hospitals. Watch the video and read the excerpts below.

"Patients should have the opportunity to see a true expert in whatever disease they have"

Prof Bowen:
"What an expert can offer is a detailed review of the patient, taking into account the specific context of that MDS patient, the advances in the biology of the disease, the experience of that MDS expert who would have seen a lot of patients over the years, and imparting much more information to the patient than is conceivable in the local hospital, simply because there is no time for detailed conversations (in the local hospital)"

Can a patient be seen at a MDS specialist centre as well as their local hospital?

Prof Bowen:
"For specialist opinions we have some patients that we would like to come back to the specialist centre and go back to their own hospital... We make sure that they don't duplicate efforts, and we make sure that there is a reasonable linkage to the other hospital and to our hospital. Younger patients that at some point could be considered for transplantation, who we perhaps see intermittently at the specialist centre, we test the bone marrow intermittently and we see the detailed results, that's one example. And there are others who come just to keep in touch with us, as well as receive their practical care at their hospital. As long as the written communication stream is good and the verbal communication is good between the medical staff and the specialists, that all works very well."

If you would like more information and advice about MDS, contact us at:

Postal Address:
MDS UK Patient Support Group
King's College Hospital
Haematology - Bessemer Wing
Denmark Hill
London SE5 9NU, UK
Telephone: 020 7733 7558
Email: info@mdspatientsupport.org.uk

Prof Bowen explains how new treatments for MDS are developed and the importance of clinical trials

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Watch Prof Bowen Video on MDS Clinical Trials

In the second video of this series, Professor David Bowen, Consultant Haematologist at St James University Hospital, Leeds, explains why clinical trials are key in the development of new treatments for MDS.  

Prof Bowen is an honorary professor of Myeloid Leukemia Studies and Consultant Hematologist at St. James’s Institute of Oncology, Leeds, in the United Kingdom. 

He is chief and co-investigator for several national MDS clinical trials and a member of the NICE Appraisal Committee evaluating cost-effectiveness of newly licensed drugs for potential use within the UK NHS. He also co-chairs the Steering Committee of the EUMDS Registry Trial.

We are honoured to have Prof Bowen as one of MDS UK Patient Support Group Scientific Advisors.

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“One of the biggest challenges for a patient is they’ve never heard of MDS” says Prof David Bowen

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In the first video of this series, Prof. David Bowen – Consultant Haematologist at St James University Hospital, Leeds talks to Sophie Wintrich, Chief Executive of the MDS UK Patient Support Group, about how important it is to be a well-informed patient. Watch the video and read the excerpts below.

What are the typical issues when you first diagnose a patient with MDS?

What difference does it make to you personally - in your daily consultations – to have a well-informed or empowered patient? Benefits/drawbacks?

"If the patient has some idea about what MDS is and they come with a set of questions from their own readings, that is a useful framework to find the details that are specific to them.
I usually use the MDS Patients Support Booklet... I mark the booklet and the sections that are relevant to them..." Prof. David Bowen

How important is it to have a treatment plan for MDS? Why?

How do you address and explore quality of life issues with patients and their families?

Prof David Bowen: The Revised International Prognostic Scoring System Decoded

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MDS Patient Support

Prof David Bowen, honorary professor of Myeloid Leukemia Studies and Consultant Hematologist at St. James’s Institute of Oncology in Leeds, has published his quarterly article in the MDS Beacon, discussing the International Prognostic Scoring System and attempting to decode the revised edition.

Click here to read the full article on the MDS Beacon.

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