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New animation to explain MDS to all

Please help us support more patients!

Donate on MDS UK JustGiving Page

This ground-breaking animation for MDS World Awareness Day 2020 aims to raise awareness of MDS (Myelodysplastic Syndromes) to create an accessible story for newly diagnosed patients and their loved ones, signpost them to help and support and raise funds for MDS UK.

Wider research work by MDS UK:

We would aim to use any donations to help us cover the costs arising from our involvement in, and contribution to, MDS-related research.

MDS UK staff, committee members and expert patients are involved all year round in different aspects of research, including addressing the issue of access to MDS treatments.

We regularly provide input to Patient and Public Information (PPI) work, for both commercial and non-commercial clinical trials.

We are financially compensated for some of this work, but not all.

This work entails revising, and often improving, patient information documentation, as well as sometimes commenting on the overall setup of a trial, to ensure it meets the true needs of patients.

Through our work and services to our member patients and families, we now have the most extensive list of MDS patients in the UK – an invaluable resource for real patient feedback for all researchers, and for all the leading MDS experts we work with closely.

We conduct patient surveys and focus groups among  our membership base, ensuring we capture their wishes and are mindful of their concerns. We then feed that information back to clinical trial investigators, as well as to ethics boards who have to approve clinical studies.

 

Through our input to the European Medicines Agency (EMA), and National Institute of Clinical Health and Excellence (NICE),we have been heavily involved in work undertaken in order to make MDS drugs accessible to patients.

This type of work helps to ease and speed up the process of licensing of drugs, and their financial approval for use in the NHS.

Patient groups like us play an absolutely crucial role in this area, and can make the difference between a drug being accessible, or not.

Of note, our work was pivotal in the case of enabling access to azacitidine and lenalidomide, the first two MDS-specific drugs to be made available in the UK.

Clinical research and medical trials are essential but, without access to the proven effective drug, they are of no benefit to patients.

In terms of access to drugs, we also discuss with various pharmaceutical companies the compassionate use in individual cases. We would like to see all pharma companies making a wider effort to provide drugs on such a basis, again in specific and selected circumstances.

Having funded one PhD research project (at Queen’s University, Belfast ), we are also considering funding more direct research, should our funds allow us to do so in future.

 

This ‘wider research and access work’ takes time, effort and energy, and therefore needs to be funded somehow.

Without this work, ethics boards would not approve trials, EMA and NICE processes would be delayed, and access to drugs might be compromised. And, above all, the voice, needs and wishes of patients would not be heard or considered.

 

If you have found this topic of interest and would like to support us in such work, we would welcome any donations, however small. If you can, please use Gift Aid to enhance the value of your donation to us by 25%, at no additional cost to yourself.

Please help us support more patients!

Donate on MDS UK JustGiving Page


Dr Martin Wermke explains how iron overload can affect the outcome of stem cell transplant


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


MDS World Awareness Day 25th October – Flash Mob and more!

AMAZING FLASH MOB IN TWICKENHAM TO RAISE AWARENESS OF MDS

To celebrate MDS World Awareness Day a cheerful bunch from the Bearcat Running Club  stormed the Cabbage Patch Pub in Twickenham and started dancing to the tune of Gloria Gaynor "I am what I am"!! WATCH THE VIDEO:

Such was the impact that people were reported to donate spontaneously after the dance, without even been asked!
 
Our member and Oxford Group Coordinator, Claudia Richards, says in our Facebook group page:

Always wear your MDS UK T-shirt with pride - you never know when someone will give you an unexpected donation (as happened to me as I walked up Twickenham High Street after the Cabbage Patch 10 yesterday!)

CABBAGE PATCH RACE FOR MDS UK: NATIONWIDE COVERAGE!

The 10-mile race Cabbage Patch Race by :
One of my favourite autumn races took place yesterday - the Cabbage Patch 10 miler. I can’t say I did it much justice on very weary post-marathon legs, but as always it was a great run, through Twickenham, Ham and Richmond, along the river and past some rather bemused dog walkers and startling innocent bystanders.

True to form, the race was won in the sprightly times of 49min 42sec and 54min 46sec. Yes, for 10 miles. I missed the awards ceremony, which is a shame as the look on the winners faces (if they’ve not done it before) when they are presented with an actual cabbage is usually worth staying for. The prize money for this local race is very generous, and the times always impressive - one Mo Farah is a former winner - but my own particular congrats to my teammates Stephen and Nick, who both came in under an hour.

In addition, one of the runners, wrote a great blog mentioning MDS World Awareness Day!. She says:
Today, 25th October 2017, is Global MDS Awareness Day and it’s time to spread the word about this little known form of blood cancer. So, what is MDS, or Myelodysplastic Syndromes?

According to the MDS Alliance, MDS are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. Approximately 2,500 new cases of MDS are diagnosed in the UK every year but it is thought that many go unreported. Although most people who develop it are over the age of 65, it can strike at any time.

To mark MDS World Awareness Day, Caitlin Limmer, Patron of the MDS Patient Support Group charity, organised a ‘Flash Mob’ on a busy street in Twickenham (just down the road from Virgo’s Richmond office), whereby the Bearcats running club which she heads up (she’s one busy lady!) broke into a fabulous dance routine, all wearing their distinctive, red MDS t-shirts. This took place right after a popular local 10 mile race, the Cabbage Patch 10, so there was a good crowd of surprised athletes assembled to watch the action unfold. You can check out the video here.

Bravo, Caitlin and the Bearcats, we love your work!

MDS AWARENESS WALK ON THE 25TH

On the 25th of October, our tireless patron Caitlin Limmer, took more people - and a dog - on a leisurely MDS Awareness walk.

Another fabulous event, that we mean to turn into an MDS AWARENESS tradition!!


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: mds-uk@mds-foundation.org


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


MDS Treatment: What to Expect from a Visit to a Consultant

Dr. Christopher Dalley & Dr. Timothy Chevassut – Haematologists at Brighton and Sussex University Hospitals Trust and Royal Sussex Hospital NHS Trust - give an account of how they discuss diagnosis and treatment with their MDS patients. Watch the video and read the transcript below.

What are the typical issues when you first diagnose a patient with MDS and when may you tell patients about the existence of a support group?

I think it's really difficult sometimes for patients to understand what goes on in the blood. So, for me, it's really important to try to give an appropriate explanation about what myelodysplasia is and the symptoms they may have. Of course, because it is a significant blood disorder with lots of anxiety, you want to be able to support the patient when you give the diagnosis and try to allay any anxieties that they may have.

In terms of the diagnosis and explaining the diagnosis, there's lots of written information available, so it's very important for patients to access that (and I often give that to patients at first diagnosis or subsequent visits) and also to be able to access support from the MDS Patients Forum. So normally I give that information at the time of diagnosis, and a clinical nurse specialist who I work closely with will also reiterate that to patients.

And how have you seen the Patient Support Group activities and materials help specific patients?

Well, a lot of patients have questions and I think, in this day and age, most patients want to have information that they can access and it's not always the case that you can access that information in the clinic or have all the questions answered in the clinic, to be honest. So I find that if they have additional support they can access that information, talk to other patients and experts and to other family members from across the UK. I think that's really important and a great help for patients and families.

Tim, how frequently do you discuss clinical trials with your MDS patients and have you heard of any trials today that sound interesting or promising?

We discuss clinical trials as and when it's appropriate to do so. Obviously, we have established treatments by way of Azacitidine for patients newly diagnosed with high-risk myelodysplasia but, of course, not all patients respond to those treatments. Some will progress to leukaemia, others won't have an adequate response in terms of their blood count. So there are many occasions when we have to look at alternative treatments for these patients and that really would be the occasion for bringing up clinical trial opportunities both within Brighton and elsewhere, for instance at Kings or elsewhere in London.

And what kind of difficulties do you encounter with explaining the concept of trials to patients? Have you got an example of a really successful trial for a patient?

I think the concept of clinical trials and the problems perhaps we encounter when we discuss these with patients are conveying the sort of complexity of the study in simple terms that they're able to get their head round. These are often very complicated trials with a lot of patient information with them. But, in essence, the question that all clinical trials are trying to answer is whether new treatments that are becoming available for us are better than standard treatment. For most of the patients who fail Azacitidine, there really isn't any "Plan B", so we are very keen to try and understand where these newer therapies will fit in future treatment for our patients.

You asked about clinical trials that we have ongoing in Brighton at the moment: we're looking at antibody-based therapies, at targeted therapies; we're looking at Immune Checkpoint Inhibitor therapy which is very promising in the solid tumour field, but not yet established in blood cancers; we're looking at antisense therapy, hopefully next year, in patients who have refractory anaemia or anaemia that's no longer responding to Erythropoietin, for instance.

So we have some interesting trials locally and obviously many others elsewhere in the country. The important thing is giving patients the opportunity to take part in these studies and make these studies available to them.


Second Opinions are Welcomed says Dr. Simone Green

How is a patient's treatment discussed and managed?

Sophie Wintrich, Chief Executive of the MDS UK Patient Support Group, interviewed Dr. Simone Green – Haematologist at Hull and East Yorkshire Hospitals, NHS Trust. Watch the video and read the transcript below.

What are the benefits of patients’ groups? What difference does it make to you personally, in your daily consultations, to have a well-informed or empowered patient?

I think these patients tend to be more involved in their ongoing care. They come to the consultation with information and it makes the consultation flow much easier. They know what they want out of their management, they know what they want for their long-term care. It just makes the consultation easier when you need to discuss the diagnosis, the prognosis, etc.

Are there any drawbacks to having a patient who is “over-informed”?

It always good for patients to be informed. But we sometimes encounter difficulties when a patient becomes disappointed when a new drug, for example, is not available to them in their centre. With MDS there are new drugs coming out, most of them available in clinical trial studies only. So, if a study is not available at their centre or somewhere that is easily accessible, it’s disappointing for the patient. That’s one difficulty.

One topic that comes up very often in our patients’ calls is second, or what we call 'additional', opinions. What are your views on patients who request an additional opinion? Does it offend you if a patient asks for an additional opinion when he is seen by you?

One of the reasons that I went into haematology is that we work as a team - there is no individualised treatment, the treatment is all evidence based and we work as a team managing our patients. I welcome a second opinion, it’s always good to have fresh eyes, bringing a new perspective on how to manage a patient. It involves someone else’s expertise.

What is the difference for patients between being discussed in an MDT1 and going for an additional opinion somewhere else, as you have just explained?

An MDT involves decision making within a local team, or a local network in some situations. So obviously that will take into account the local guidelines, which are evidence based, but it will be tailored to that local environment. It looks at the local resources available and the local expertise as well - so the clinical experience within that centre. A second opinion will be outside of that local setting, taking into account someone else’s experience and expertise, and probably it would have a perspective based on a lot more information and more resources.

1 A Multidisciplinary Team (MDT) is a group of health care workers and social care professionals who are experts in different areas with different professional backgrounds, united as a team for planning and implementing treatment programs for complex medical conditions.

"Well-informed patients tend to be more involved in their daily care. They come to the consultation with information and it makes the consultation flow much easier. They know what they want out of their management, they know what they want for their long-term care..." Dr. Simone Green


“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?


Personalised Treatment for MDS Patients: Not Far-Off says Dr Catherine Cargo

Where are we exactly with respect to personalised treatment for MDS patients?

Sophie Wintrich, Chief Executive of MDS Patients Support Group interviewed Dr Catherine Cargo – Consultant Haematologist at St James University Hospital – Leeds. Watch the video and read the transcript below.

MDS: A disease where everybody is different

When we think about personalised treatment we think about a disease where everybody is different. We group all these patients together, but everybody’s disease has slightly different changes in the genetic make-up of the disease and also how they progress or how they do in the duration of their disease.

The really interesting thing about where we are with MDS now is that we will hopefully be able to personalise treatment for the patient so we can look at the patient - look at their individual disease and what abnormalities they have - and then potentially target those abnormalities with specific drugs.

"We are starting to see particular drugs which target specific abnormalities"

I think that it is an exciting time, because we are now starting to see particular drugs which target abnormalities or genetic mutations which are found in MDS and certain patients will respond very well to those.

Another interesting thing is that we can use technologies to identify patients who will respond to more generic drugs - drugs that we at the minute give to everybody. There will be certain patients who will respond very well to those and we should be able to use a lot of these new technologies to identify patients who will respond better, and give patients an idea of how they are going to do on treatment and what their future holds.

Does it mean that all patients must have genetic mutation test?

Q: Does that mean we should start to insist that all patients must have genetic mutation tests to establish which treatments may work out best for them?

I think we are getting to the point where this information is going to be useful in the clinic. We are still gathering information and the tests that we use are still quite difficult and quite complicated for a lot of different labs. And at the minute we don’t have a very standardized way of doing this, so there is quite a lot of work that needs to be done before we get to the point where we can offer this as a blanket test for everybody. I think we will get there and it is something that we will do in the future. It is an option, we can do it in the UK. It’s exciting and I think it will be offered in future, but we shouldn't necessarily be insisting on it now. There are certain cases where it will be particularly helpful and it’s definitely being applied in the clinical trial setting. It will be very interesting gathering that information. At some point in the future we will be able to insist that patients do get this testing done.

Q: How far off is this future?
I don’t think that it is that far off. This is something that we are going to be doing quite soon. The technology is there. It’s becoming cheaper and cheaper to do, and it’s becoming easier to do, even within the NHS. So I think within the next couple of years we will be seeing this as a routine test for MDS patients.


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