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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


The MDS cheer team was at the Cabbage Patch on October 15!

Cabbage Patch 10 is nearly upon us!

We are getting together for the Cabbage Patch 10 mile run on the 15th October to support our runners and shout out about MDS in the run-up to MDS World Awareness Day.

Join us on the 15th of October to raise awareness and fundraise for MDS.

Or why not having a go at dancing for a repeat of our legendary flashmob following Gloria Gaynor's inspiring tune "I am what I am?"

Share the Cabbage Patch Run details

Watch our flash mob video & learn the moves

Hurrah for our fundraisers!

We have an amazing team of 15 runners fundraising for us. Click on their names to sponsor their efforts on their Virgin Money Giving Pages:
Darren Laverty
Daniel Holah
Sarah Mayo
Nicky Morgan
Lisa Hepburn
Alec Holah
Alicia Madgwick
Hayley Saunders
Gareth Clifton
Simon Gardiner
Mark Read
Chris Fawcett
Mike Leigh
Russell Cook
Rowland Phillips

More upcoming events for all abilities


Help improve the blood transfusion experience for MDS patients

How can blood transfusions be improved?

Depending on blood transfusion has a negative impact on the quality of life of MDS patients, but it is unavoidable for many patients.

That is the reason why a group of Canadian and United Kingdom haematologists are looking into running a series of studies to improve the red blood cell transfusion experience for MDS patients and improve their quality of life.

Before doing so, they are on a quest to understand better how red blood cell transfusions are being conducted today and ask patients what could be done, in their opinion, to make it better.

How can you help?

If you are a Myelodysplastic Syndromes (MDS) patient, you live in the US, the UK or Canada and you've been receiving at least one unit of red blood cells every eight weeks for the last 4 month period, the research team would like to hear from you.

MDS Red Blood Cell Transfusion Survey

You are invited to participate in this online survey.

The online survey will take approximately 5-10 minutes. Your responses will be kept strictly confidential. Be reassured that they will not collect any information that will personally identify you.

Your participation in the study is voluntary, i.e. you may choose not to participate at all and you may exit the survey at any time.

The Research Team

Rena Buckstein MD FRCPC Associate Professor, University of Toronto, Department of Medicine, Division of Hematology/Oncology
Yulia Lin MD FRCPC Associate Professor, University of Toronto, Department of Laboratory Medicine and Pathobiology
Jeannie Callum MD FRCPC Associate Professor, University of Toronto, Department of Laboratory Medicine and Pathobiology
Simon Stanworth MD Consultant Hematologist, NHS Blood and Transplant, Oxford University Hospitals NHS Trust

Take a look at current MDS clinical trials


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.

Why does anemia develop in MDS? Watch the video

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


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


Can Azacitidine be administered at home? The Spanish experience

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

Learn more about Azacitidine (Vidaza)


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.  www.mdspatientsupport.org.uk.

 

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 mds-uk@mds-foundation.org


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


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