this must be archive.php

New service for patients: online video consultations with an MDS specialist

Are you unable to travel? Would you like to have a second opinion? One to one video consultations online

This is a brand new NHS service for MDS patients, for online clinical consultations with one of the main MDS specialists in the UK, Professor David Bowen, from the MDS Centre of Excellence in Leeds.

Video consultations are available on Wednesdays but with some flexibility.

Make an appointment today!

Contact Prof Bowen’s secretary by mail Faye.goldberg-johnson@nhs.net or call 0113 2068465

Who is it for?

  • Any MDS patients who would like a specialist MDS consultation.
  • This service is very similar to the standard referral request for an “Additional opinion” at an MDS Centre of Excellence.

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

How can you access this?

If interested, just like any conventional referral request, speak to your GP or local haematologist, explaining you would like to have an additional opinion from an MDS expert.

MDS is a rarer disease, and often requires an MDS expert to evaluate the exact sub-type of MDS, or explore and discuss additional treatment options, including clinical trials.

Your haematologist, or GP, needs to refer via the traditional referral system, to Professor David Bowen, at Leeds Teaching Hospital.

An appointment will be arranged after receipt of a formal referral from either the GP or local Haematologist, which should contain as much detail as possible, specifically results of bone marrow tests and details of treatment

Technical Requirements:

Patients will require an internet connection and a smartphone, tablet or laptop/desktop computer with a camera.

This video consultation service is offered via a secure portal from a professional company specialising in NHS video consultation, and confidentiality is of paramount importance.

Video communication

Video communication

How does it work?

A User Guide will be sent to you with the appointment notification.

The appointment will be arranged after receipt of a formal referral from either the GP or local Haematologist, which should contain as much detail as possible, specifically results of bone marrow tests and details of treatment.

The consultation will either be a one-off session, or part of an on-going care, depending on the situation and patient preference, just like the more traditional “shared care” setup.

Make an appointment today!

Contact Prof Bowen’s secretary by mail Faye.goldberg-johnson@nhs.net or call 0113 2068465

Patients outside England

NHS funding mandates that for UK patients resident outside England, the local consultant / GP must have agreed funding for the consultation from the local payers (eg Health Boards in Scotland, and equivalent in N. Ireland and Wales), prior to the formal referral to Professor Bowen.

Overseas patients

The video consultation service is available to overseas patients for a relatively small fee.

A formal referral from a local haematologist is preferred, accompanied by details of bone marrow and blood tests, and of treatments received.

These can be sent by email to Professor Bowen’s secretary, Faye.goldberg-johnson@nhs.net

 

Prior to the consultation a signed document confirming the undertaking to pay the overseas patient fee must be received by Leeds Teaching Hospital. An approximate charge for a single consultation is currently £196; this may vary.

Contact Us:

For any questions, please contact us directly at MDS UK info@mdspatientsupport.org.uk - Tel 020 77337558


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

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.

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!

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

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.


The European MDS Registry: learning about the ‘real’ MDS patients

Research FOR Patients
For an informed and empowered opinion
and an improved consultation
Have you made your clinical paper accessible yet?

What is a Clinical Registry?

By Prof. David Bowen

In order to develop new drugs to treat MDS, clinical trials are mandatory, typically testing the new drug against the treatment that is considered to be the standard at that time.

However patients in clinical trials are often different to those that we see every week in our clinics because the clinical trial will try to treat a group of patients who seem quite similar to each other and that means leaving out the patients with other diseases in addition to their MDS, or those too infirm to travel to and from the trial centre for example.

The best way to study a typical group of MDS patients without any restrictions is to set up a Registry. This involves obtaining consent from patients to collect information about their MDS and the treatments that they receive at their usual clinic or Day Case Unit visits.

They may be asked to complete some questionnaires and sometimes to volunteer occasional extra blood samples but essentially the idea is simple; to systematically capture the usual care of all MDS patients over time into one large database.

European MDS Registry

The European MDS Registry (EUMDS) started on April 1st 2008, recording information from patients with ‘low-risk’ MDS in 10 European countries. Now the Registry has expanded to include 145 individual hospitals in 17 countries. The Registry has gathered information on more than 2000 low-risk MDS patients. 

Patients start in the registry within 3 months from their diagnosis and are followed for their lifetime with information recorded every 6 months. This information includes any treatment that they received, how they perceive their quality of life and giving a small ‘serum’ blood sample. Patients in the registry now have information from an average of four 6-monthly visits recorded. 

The UK has a prominent role in the project. We have registered 327 UK patients so far, the second highest number registered per country after France. The UK hospitals that are participating in order of number of patients recruited are: Leeds, Aberdeen, Blackpool, Worcester, Airedale, Northampton, Mid Yorkshire, Bradford, Bournemouth, Harrogate, Truro, York, Oxford, Cambridge, Nottingham, Newcastle, Glasgow, Huddersfield, Manchester Christie, Birmingham Queen Elizabeth.

We have collected half of all of the blood ‘serum’ samples for the entire project, which are being used for interesting research studies (701 UK samples out of a total of 1211 samples analysed in EUMDS). Our patients have completed the quality of life questionnaires with a high completion rate (298/327 patients; better than most European countries). The UK is playing a prominent role in the organisational and strategic aspects of the EUMDS programme, which is led overall by Professor Theo de Witte from The Netherlands. Professor David Bowen leads the UK arm and is also Co-Chair of the Steering Committee for the EUMDS programme. The University of York Health Sciences Unit (Dr. Alex Smith and colleagues, https://www.york.ac.uk/healthsciences/research/ecsg/) hosts the database, provides the informational technology support and analyses the data.

We are building a picture of how low-risk MDS is cared for generally in Europe and also in different countries with some interesting patterns emerging. As well as the general information collected and analysed, there are more detailed research projects evolving within the registry, for example looking at the patients who have received blood transfusions, studying those that have received a blood stimulating drug like erythropoietin (EPO), or the possible importance (or not) of overloading with iron for patients receiving blood transfusions.

We are also studying the bone marrow samples using modern diagnostic tests like next-generation sequencing [NGS] which gives us more detail about the different biology of each patient’s type of MDS. We will then be able to look at how this new detailed information could help to predict how patients will fare generally (for example life expectancy/survival and the chances of MDS changing to more aggressive leukaemia) and maybe better predict who might respond to which treatments.

We are now moving onto the next phase of the programme, including higher-risk MDS patients in the registry and engaging new sponsors and new funding streams.

We are deeply grateful to those patients who are helping with this important research initiative.

Although technically it maybe an ‘offshoot’ of EUMDS, the European Union funded 5-year MDS-RIGHT project is a wide ranging, ambitious programme with the potential to lead to an integrated European network for:

  1. MDS research
  2. patients
  3. influencing important stakeholders such as the regulatory agencies, the payers (Department of Health in UK) and policymakers.

Almost all key opinion leaders for MDS are centrally involved in MDS-RIGHT giving this prestigious programme high credibility and huge potential. Again the University of York is an important partner with Health Economics (cost effectiveness, led by Professor Manca, https://www.york.ac.uk/che/staff/research/andrea-manca) now added to the goals.

The European MDS Registry is supported by an unrestricted educational grant from Novartis Oncology Europe.
MDS-RIGHT is funded by the European Union (a programme called Horizon 2020 research and innovation under grant agreement No. 634789).
Key websites: https://mds-europe.eu - http://www.eumds.org

MDS UK – Note to patients

MDS UK Note: Interested in taking part as a patient?
If you are newly diagnosed – please ask your haematologist about it.
Show them this article and state you’d like to volunteer your blood and biopsy samples – and contribute to this important research.

For any further information, please contact MDS UK:
Email: info@mdspatientsupport.org.uk
Tel: 020 733 7558

Please quote the following information if you wish to use our ResearchFORPatients article:

Source: www.mdspatientsupport.org.uk / ResearchFORpatients

Original reference paper:
Registry Nov 2016 Author: David Bowen, Honorary Professor of Myeloid Leukaemia Studies and Consultant Haematologist, St James’s Institute of Oncology, Leeds


MDS Treatment: Prof. David Bowen talks about genetics, where we are now and where we’re heading

Sophie Wintrich, Chief Executive of the MDS UK Patient Support Group, interviewed Prof. David Bowen – Consultant Haematologist at St James University Hospital, Leeds. Watch the video and read the excerpts below.

"We've always practiced personalised medicine"

"Personalised medicine means that you sit with an individual in front of you and you consider them as an individual, and you talk about their disease, their type of MDS in the context of their problems, their symptoms, so it's always been personalised. It's always been personalised in that you use your intuition, your experience and your judgement in the management of that patient."

"To practice good, proper precision medicine, you need the biological data, you need an idea of their quality of life, you need an idea of the diseases affecting that patient and you need an idea of that person's preferences. There are many factors now playing into the concept of personalised or precision medicine. The general view is that precision medicine is all about genomics, but it isn't..."

Should we start to insist that all MDS patients must have a genetic mutation test to establish what treatments may work out best for them?

"Genomic medicine is very much the happening field of cancer biology at the moment, and MDS is no exception. In fact MDS has been leading the way"..."We can tell from a set of mutations that we analyse which MDS patient has which mutations; but there are many technical reasons why one mutation may be relevant, and the same gene mutated in another patient might not be causing the disease or might not be present in a high enough quantity to be sure that it's actually relevant."

"The more we know about this field, the more complex the analysis of the data becomes." "Whether every patient needs a genetic test for routine management is debatable, because there are relatively few drugs that we use that are actually able to target the mutations that we know are there. If we see mutation X, we use drug Y - we are not quite there yet."

What would be the research benefit of collecting tissue samples from all MDS patients? How can patients ensure this happens?

"Research is always important. Without research we don't make progress. There is more of an acceptance today that large data sets from routinely treated patients are just as valuable as clinical trials that we do in parallel."

"We have a big registry programme here in Yorkshire and Humber where we are doing mutation analysis on all MDS patients, following over time, from a population of about 3,000,000 people... In the European Registry we are doing something similar. It is great if a patient can participate in this. All these initiatives are going to inform the way we treat patients in the future."

Learn more about the Registry Trial

Check other current clinical trials


Have you ever visited an MDS Specialist Centre?

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

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.

Read More


When is the right time to give a blood transfusion?

When is a blood transfusion considered? How low should the cell count be?

When the blood lacks enough healthy red blood cells or haemoglobin, anemia symptoms develop, typically fatigue, shortness of breath, weight loss, paler than normal skin, etc and a blood transfusion is considered.

There is no set haemoglobin level at which a blood transfusion is given, but your doctor will assess your symptoms and you will decide together.

Prof. David Bowen says in a recent article:

I often delve back deep into the case notes to try to find a ‘normal’ haemoglobin level for that individual from many years before their diagnosis. I think that it helps to say to a patient for example ‘you are 30% down on your normal haemoglobin so it’s not surprising that you are feeling the effects’. This also helps us both to understand that the patient may have meaningful symptoms of anaemia despite their haemoglobin level being higher than that recommended for active treatment in the guidelines that we follow.

New animation to explain MDS to all

How often can a patient have a blood transfusion?

How often you have transfusions will vary between patients; some need transfusions every few months whilst others need one every every couple of weeks. Very often, once a patient has started having regular blood transfusions, the length of time between transfusions will gradually get shorter.
We asked Prof. Bowen if there is a limit on how often a patient could have blood transfusions. Prof. Bowen replied:

The simple answer is that there is no limit.
If blood transfusions are becoming considerably more frequent then the doctor needs to consider if there could be an explanation in addition to the MDS such as bleeding (usually internal) or the red blood cells being destroyed more quickly (haemolysis). These may be able to be treated and the transfusions will then reduce. However by far the most common situation is that the red blood cell production from the bone marrow gets poorer and poorer with time in some patients. We will transfuse as often as is needed to maintain acceptable quality of life and we often transfuse patients every 2 weeks and sometimes weekly. There is a move towards thinking about more frequent transfusions with fewer bags each time as this mimics the normal situation better without the big peaks and troughs of energy gain then energy deterioration.

Blood transfusions lead to (temporary) improvements in a patient’s quality of life

The potential side effect of blood transfusions: Iron Overload

With every unit of blood you receive from a transfusion, you will receive an excess amount of iron. Over time this can accumulate in your body and could possibly cause damage to certain organs, like your heart or liver.

There is still considerable uncertainty whether too much iron in your body is always harmful. The level of iron in your body should be checked regularly, especially when you are on a regular transfusion program and you may need treatment for the build-up of excess iron. This is called iron chelation. There is currently uncertainty about the benefits of removing iron. Whether you are offered iron chelation treatment or not will depend on the likely benefits versus the likely disadvantages in your
individual case. This will be discussed with you before you make a decision to start iron chelation.

Some patients will develop complications that could be related to iron overload such as heart failure, liver abnormalities and diabetes, but these complications have other causes in older age, and it is always difficult to be certain how much iron overload is responsible, and we have drugs that can effectively remove iron from the body.

Says Prof Bowen.

Read Prof David Bowen full article in MDS EUROPE: "Which patients need more blood transfusions to improve quality of life and can we identify the patients who need iron chelation more precisely?"

Learn More About MDS Treatments


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

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

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.


Free donations by shopping