The RIGHT treatment for the right patient at the right time – a crucial EU initiative

More than 70 participants representing medical specialists and nurses caring for MDS patients, MDS patient advocates, medical researchers and data managers, healthcare authorities, regulators, HTA experts and industry representatives gathered for the first MDS-RIGHT multi-stakeholder meeting on the 3 May 2017 in Valencia, Spain - in conjunction with the biannual MDS 2017 International Symposium. 

This project is an essential and fantastic EU initiative – and we urge all dealing with Myelodysplastic Syndromes to keep abreast of news and developments.

Here are the main articles and reports:

You may also be interested in this recent interview with Prof David Bowen

More from MDS RIGHT

Would you like to run for us? Help patients by raising awareness & money for 3 patients meetings!

This year, our charity MDS UK was lucky enough to have 2 runners in the 2017 London Marathon Alec Holah, brother in law of Gavin Hepburn, who passed away a year ago, and Kirsty Crozier, an MDS Clinical Nurse Specialist in Oxford and Member of the MDS Committee.

We took this opportunity to conduct several interviews about the marathon, our charity and what it means to work closely with us.

We thank each one of our interviewees deeply for their kind, dedicated, thoughtful and generous input. They are wonderful friends, very close to our dear charity.

"It's not just about raising money, it's raising awareness" Dan & Alec Holah

Russel Cook, Deputy Chairman and Head of Fundraising. He ran several marathons after his transplant for MDS

"More people will start to understand the illness"... "The charity is amazing" Olivia & Tilly Hepburn

"We will always want to work with the charity. I feel we need to keep that awareness going" Lisa Hepburn

Azacitidine treatment at home – more cost-efficient in Spain

A new project was trialled for more than two years by nurses from home-care units in Spain: 'Azacitidine administration at home'.

Now it has been rolled out to include most of the hospitals in Spain administering Azacitidine. It was initially undertaken by nurses, not necessarily haematology nurses, who would visit patients at home usually by taxi from the hospital.

The economic savings were shown to be vast, saving around one-third compared to hospital administration. This equated to around 100.000 euros per year per patient.

See comparison below and download the full presentation here

Receiving Azacitidine at home increased patients' satisfaction

The patient videos and reports demonstrated clearly the increased level of patient satisfaction and improved quality of life for this patient group. Discussions around this included other units adopting the practice of caregivers trained to give azacitidine at home once they had collected from the hospital on daily basis. This again showed a significant positive impact on patients who, for example, were already fatigued.

Get the latest on MDS Treatment from the MDS Foundation Symposium

Janet Hayden, Myeloid Clinical Nurse Specialist, from Kings College NHS Foundation Trust, London (Adapted by MDS UK Patient Support Group) brings the latest in MDS Treatment from the Annual MDS Symposium in Valencia.

MDS Foundation Symposium May 2017

Some patients are suitable for home treatment after stem-cell transplant

Many interesting projects were presented during the nursing sessions, of which three were of particular interest and relevance to myself and my professional practice.

The first presentation - 'Home Care for MDS Patients Undergoing Allogeneic Bone Marrow Transplantation', by nurse Nuria Borras - covered a project by a nurses' group in Barcelona who were already working in an established ambulatory care unit that had undertaken many autologous transplants. Three MDS patients were chosen as a pilot to receive home care after their chemotherapy and stem cell infusion. After they were all successfully discharged to home care, they were visited twice a day at home and brought to the out-patient department twice weekly. All of these patients had achieved remission with Azacitidine prior to transplant and none of the patients received Campath or ATG as part of their conditioning. It was reported that none of the patients were readmitted. It was discussed that these patients had had a good or very good performance status prior to transplant and were already very familiar with the routine of self-management and receiving out-patient care. It was concluded that careful selection of patients may be appropriate to out-patient care delivery.

Azacitidine Treatment at Home

A further very interesting project was again presented by nurses in Spain: 'Azacitidine administration at home', by Laura Muñoz Tirado.

A project that has how been rolled out to include most of the hospitals in Spain administering Azacitidine, this project was undertaken across the country by nurses from home-care units. These nurses were not necessarily haematology nurses. They would visit patients at home usually by taxi from the hospital. The economic savings were shown to be vast, saving around one-third compared to hospital administration. This equated to around 100.000 euros per year per patient.

See comparison below and full presentation here.

The patient videos and reports demonstrated clearly the increased level of patient satisfaction and improved quality of life for this patient group. Discussions around this included other units adopting the practice of caregivers trained to give azacitidine at home once they had collected from the hospital on daily basis. This again showed a significant positive impact on patients who, for example, were already fatigued.

Photovoice: Patients' photos representing their MDS journey

Petra Lindroos-Kölqvist from Sweden presented Photovoice for MDS patients. This project allowed patients to take photos of things which represented their MDS journey. They were then interviewed and allowed to discuss their photos. A thematic analysis was made and themes such as hope, treatment, family and places were identified. Further work is proposed ....

See here the full presentation sent by our Swedish friend Petra and her nursing team

Managing your MDS with your Phone

As an international MDS nursing community, we rarely get the opportunity to get together and discuss our professional practice and patient care. The Nursing Leadership Board of which I am a member, facilitated some networking meetings during our stay in Valencia. In the past these meetings have produced collaborative projects and publications.

Of note and particular interest this year is that Sandy Kurtin has produced, as part of her ongoing PhD, an app for smartphones and tablets called MDS manager. The purposes of this app are to complement the already comprehensive publications of Building Blocks of Hope produced by the MDS Foundation. The app will have the capability to store MDS profile (IPSS-R scores, BM results), track bloods counts, transfusions and treatments, record symptoms, contacts of key professionals, medications, download reports, calendars for appointments and much more. Also, notifications can be sent to complete quality of life information and new clinical trials. Sandy is asking for interest to trial in centres internationally and we are looking forward to being involved in this initiative.

Other discussions and opinions revolved around looking at patient education in the light of the rapidly advancing science of MDS in identifying somatic mutations and the implications for the patients. Predominantly we discussed how we might best support patients in understanding this information and identifying the risks and benefits for them in having this information in understandable and translatable form.

As well as many excellent sessions in the scientific program, this meeting also offered a comprehensive nursing program which is described in this report.

CNS Janet Hayden was able to attend the MDS Symposium, thanks to a generous grant from the expert group in MDS – the UK MDS Forum – to whom she is very grateful for the opportunity.

The MDS Symposium takes place every two years. In 2015, our patient group, the MDS UK Patient Support Group, sponsored travel for 2 nurses (Janet Hayden and Geke Ong) to attend the Symposium in Washington.


Our support opportunities are open to nurses nationwide, but unfortunately it is extremely difficult for these nurses to be granted time off or study leave – due to immense work pressure as well as to hospitals being short-staffed.

We urge hospitals and managers to allow nurses to attend such conferences – as it benefits everyone in the long term. Thank you.

If you are a nurse and are interested in our offers of support, please email us on

Realising the potential of haematology nurses and allied health professionals

Realising the potential of haematology nurses and allied health professionals

The Haematology Institute Nurses and Allied health Professionals Group is hosting a one day event on 10th July 2017 at the Robens Suite, 29th floor, Tower Wing, Guy’s Hospital London SE1 9RT. 

Read More

MDS UK tribute to Professor Rodney Taylor (1942-2017)

It is with immense sadness that we announce the death of our past Chairman, Professor Rodney Taylor on 3rd May 2017, after his MDS progressed to AML.

Euroblood Net

MDS UK Patient Support Group Chairman

Rodney was diagnosed with MDS in 2006 and was invited to become Deputy Chairman when our little patient group was still in its infancy.

Following the death of the then Chairman David Hall, Rodney became Chairman in 2010 and thereafter dedicated an immense amount of his spare time working for and leading the group until late 2016, when it was clear his MDS had progressed and no further treatment was possible.

Euroblood Net

Rodney's achievements for all MDS patients: NICE approval of Azacitidine

Rodney was an amazing, witty, gentle, very funny and extremely talented Chairman. MDS UK achieved an incredible amount of work under his guidance. The most significant achievement being the NICE approval of the drug Azacitidine in 2010. The MDS community as a whole owes him a huge debt of gratitude for this work which spanned 2 years.

You can read more about Rodney and his amazing career here:

During his time as Chairman, Rodney met with all stakeholders in the medical and pharmaceutical MDS sector and was immensely appreciated, liked and respected for his views, understanding, advice and personality across all professional and patient groups alike.

Euroblood Net
Professor Rodney Taylor with an MDS Campaigner

Passionate about a good doctor-patient communication

Rodney had two topics he was particularly passionate about resulting from his being a medical doctor as well as a patient.

The first topic was the Doctor/Patient actual communication – as to him this was absolute key to a good consultation, relationship and care overall.
Rodney taught about this and one of his wishes was to re-instate regular courses for physicians about Advanced Communication Skills.
He knew this was a skill that can be improved – and could immensely assist clinicians and therefore also patients – especially in today’s stretched NHS.

Rodney's passion for Quality of Life for MDS patients

The second topic was equally close to his heart – Quality of Life (QOL) for patients. The fact that survival is not always the ultimate aim and that patients’ wishes, desires and situations can differ greatly and need to be respected at all times. Rodney believed that QOL must be measured and assessed on a regular basis at every point in a patient’s life – from diagnosis to death – and acted upon. Rodney believed totally in the QOL of MDS patients and followed his belief in his own treatment.

Rodney was treated with Azacitidine for almost 5 years before undergoing a stem cell transplant at age 71. Three years after the transplant his QOL of life had deteriorated and he did not wish to undergo any further experimental treatments that would have meant more intensive hospital care.

Despite a few serious side-effects over the course of those three years, Rodney carried on working with the CEO and the new Chair until the last few weeks of his life. He continued to give valuable advice, opinions and views on the way ahead for MDS UK, which was much appreciated and extremely helpful to the incoming Chair. His thoughts and views were always given in his caring, considerate style – and his lovely sense of humour.

Euroblood Net
Euroblood Net
Euroblood Net

In Rodney Taylor's Memory

We at MDS UK have grown, learnt and improved thanks to Rodney’s leadership. His death is an immense loss to us. We will maintain our work and dedication to patient support and services – emphasising QOL and good communication at every opportunity - in his memory.

MDS UK was extremely important to him and the work we did was very close to his heart – and so were all the committee members and patients. He cared very deeply – and never missed an opportunity to express it. Equally – Rodney was very close to our heart too.

Rodney had not made his wishes known to MDS UK whilst alive, but he had arranged to have memorial donations directed to our organisation as an option.

We have therefore set up a page in his memory – where you can also leave a message which will be read by all family and friends:

His death comes shortly after that of a previous MDS UK Committee Member, Sharon Berger, who passed away due to similar reasons, after a second transplant.

With the increased research being conducted into MDS we all hope, as Rodney did, that a real cure or at least improved treatments, are on the way for patients.

We thank all the friends, colleagues and patients who have sent in tributes and caring thoughts regarding Rodney. We are very grateful and will pass them on to his family.

We offer our most sincere and caring condolences to his wife Janet, to his children Alice, Beatrice and Romilly and to his many grand-children.

Rodney was a man of deep faith and quiet conviction. There is a Native American saying which says "when you were born you cried and the world rejoiced. Live your life so that when you die the world cries and you rejoice”. Rodney certainly lived his life well and I am sure has received a very warm welcome in heaven. May he rest in peace.

If you wish to leave a few words about Rodney, or a comment, tribute, thought – please email us on – with the Subject: In memory of Rodney.

We will then publish your comments on this page – with your name (if you wish), or anonymously if you prefer.

Very many thanks in advance.

What is CAR T cell therapy? Learn about how this immunotherapy works

CAR T cell therapy aims to boost the immune system to attack tumor cells

Cell therapies, sometimes called “living therapies,” are an especially promising and rapidly growing area of cancer research. One approach that’s been pioneered by Memorial Sloan Kettering researchers, led by investigator Michel Sadelain, is called CAR T cell immunotherapy. This type of targeted immunotherapy aims to boost the immune system by giving immune cells the information they need to better recognize tumor cells as foreign and attack them.

How does it work?

The technique involves filtering white blood cells called T cells from a patient’s blood and introducing a new gene into those cells. A disabled virus called a vector is used to carry the gene inside the T cells and insert it into the cells’ genomes.

The gene programs the T cells to make a chimeric antigen receptor (CAR), which enables them to recognize a specific protein that’s present in cancer cells. The CAR T cells are then grown in the laboratory and infused back into the patient, where they seek out and destroy the cancer.

CAR T cell therapy is currently being evaluated in the clinic at MSK for certain types of leukemia and lymphoma. In this approach, T cells are genetically engineered to recognize a protein called CD19, which is found on the surface of blood cells called B cells. In the largest study reported so far, for adult patients with B cell acute lymphoblastic leukemia — a rapidly progressing form of blood cancer — a report published by MSK researchers last year found that 88 percent of patients responded to the therapy. In late 2014, the US Food and Drug Administration granted MSK Breakthrough Therapy Designation for its CD19 CAR therapy.

The science behind it

  • A chimeric antigen receptor (CAR) helps T cells identify tumors.
  • These T cells then recognize tumors as foreign and attack them.
  • CAR T cell therapy is being used to treat leukemia and other cancers.

Take a look at current MDS clinical trials

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

Sharon Berger, one of the founders of MDS Patient Group, a campaigner and a friend

We are deeply saddened by the news that Sharon Berger passed away a few days ago. Sharon was one of the founders of the very original MDS patient group back in 2007, when that group was still in its infancy - together with Fiona Pirilla and Kes Grant.

Euroblood Net

MDS UK Patient Support Group Treasurer

In 2008 and thereafter, when the group grew, thanks to the help and advice of the MDS Foundation, the financial support of Novartis and Celgene (and their very dedicated patient relation staff members) and the great leadership of chairman and MDS patient David Hall, Sharon became the treasurer of MDS UK, later together with her husband Stephen, until they resigned a few years later, due to Sharon's MDS progressing to AML.

MDS UK is very grateful to the time and work both Sharon and Stephen contributed over the years to the organisation.
All members who got to know them over the years, working and growing together as a group are deeply saddened and convey their condolences to the family.

Recruiting stem cell donors of Jewish origin: the great legacy of Sharon

The MDS and AML community owe a huge debt of gratitude to the Berger family who took on the extraordinary task of recruiting stem cell donors of Jewish origin, when Sharon's needed her first transplant.

Sharon had a very rare and mixed ethnic background of Russian and Ashkenazi Jewish origin, which meant a very long and difficult search for a suitable donor.

Her children Jonni and Caroline created an incredible campaign to mobilise the Jewish community to register as donors.

It grew the percentage of Jewish stem cell donors by over a 1000% and did finally result in finding a donor.

The work of Caroline and Jonni are an inspiration to all patients, organisations and haematologists, as to what can be achieved when everyone works together.

Their efforts had a huge impact everywhere and are a tribute to their Mum, who went through so much, but always brave, strong and positive.
We convey our sincere condolences to Jonni, Caroline, Stephen, Sharon's sister and all the family and many friends.

Free donations by shopping