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. 

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Watch the videos from the UK MDS Forum Education Day 2016

The following videos come from the annual UK MDS Forum Education Day 2016, which took place in London on 11th November 2016.

The day is targeted at all haematologists in the UK and Ireland who deal with MDS patients. Its aim is to provide information and updates on the most advanced scientific and clinical research in MDS. Please have a look at the agenda here.

We are now able to make the videos available online. Although these were initially intended for health professionals, patients and their families are also invited to watch. Our aim is to make this valuable information more widely available, not only to clinicians and nurses but also to patients, in order to educate and empower them, as well as explaining the fantastic research that goes on in MDS.

Immunophenotyping in MDS - Prof. Arjan Van de Loosdrecht

Case history: Immunophenotyping an MDS patient - Dr. Robin Ireland

King's Myeloid Gene Panel Development - Dr. Steve Best

CHIP / ICUS / CCUS What Does It Mean in the Clinical Practice? - Dr. Catherine Cargo

MDS Initiating Cells and Clonal Evolution - Prof. Dominique-Bonnet

Integrated Functional and Genomic Analysis of Leukaemia Stem Cells in AML - Dr. Lynn Quek

Please feel free to use and share these clips, but please credit MDS UK Patient Support Group, as well as UK MDS Forum.


MDS Awareness Day 2016 – Tuesday 25th October

MDS World Awareness Day – Preparations for 2016

October 25th is being marked by a global community of patients, patient groups and professionals supporting people living with MDS as MDS World Awareness Day.

We are preparing for MDS Day 2016, Tuesday 25th of October, to make it an exciting day for patients and their families and increase the visibility and public knowledge about the disease.  Please contact us if you’d like to participate in any events around the country.

Look at the amazing videos sent by MDS patients and their families for MDS World Awareness Day 2015!

LIFE BEYOND LIMITS - MDS World Awareness Day - In Spanish with English subtitles


Current treatment in MDS – The Irish Perspective

Slides to download: What is myelodysplasia?, Symptoms, Diagnosis and prognosis, Myelodysplasia therapy, Supportive care, Non-intensive therapy, Bone marrow transplant
Dr Helen Enright, Dublin, Ireland Patient Forum 17/06/2011


Blood vs Bone marrow: New technologies can reduce the need for bone marrow biopsies

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

Bone Marrow Biopsies: a less painful alternative for routine check-ups

Until now, bone marrow sampling has been the primary technique for routine follow-up checks on MDS patients after initial diagnosis. The bone marrow is the heart of the disease and reveals important clues, for example, about whether a patient is responding to therapy or whether the disease is stable or worsening (progression).

During the procedure, which can be uncomfortable, an aspiration from the patient's marrow is taken, and specific blood cells derived from the bone marrow are analysed, allowing clinicians to monitor the ongoing disease status of a patient.

More specifically, clinicians may look for the presence of particular genetic mutations within the cells, what the DNA chromosomes physically looks like (a technique broadly called cytogenetics) and the shape of certain bone marrow blood cells (morphology).

However, although necessary, bone marrow biopsies have many downsides. Most notably the stress and physical discomfort to the patient, for which some patients require sedation. It is an invasive procedure which therefore always carries a risk of infection. This risk also increases in elderly patients, or those with a low or very low neutrophil (white blood cell) count. This makes frequent sampling problematic which means patients may not be followed as closely as clinicians would like. Overall, for many patients, regular biopsies are yet another 'painful' and inconvenient aspect of living with MDS.

Peripheral Blood Sample: An alternative to biopsy

 

An easier alternative to a biopsy would be a peripheral blood (PB) sample (i.e. the blood already circulating in the body, which is produced in the bone marrow).

Until recently, it had not been conclusively shown in a large scale study that PB could be used to obtain similar results as a bone marrow biopsy. Also, the commonly used testing technique, called metaphase cytogenetics, does not work very well for PB samples. Therefore until now, there has been little momentum in adopting a PB sampling as standard practice.

However recent research by a group at Kings College London and the Hospital may change that (A M Mohamedali et al). Their research has demonstrated that peripheral blood samples are an equally accurate and reliable source for monitoring the genetic mutations in bone marrow derived blood cells, and hence for monitoring the disease status of a patient (please see below for full publication details).

The research group looked for the presence of various genetic abnormalities known to be frequently associated with MDS in both bone marrow samples and PB samples, and compared the results against each other.

In order to do this, they used two specific testing methods which do work for PB samples. The first is a technique called SNP – Array karyotyping (a method used to identify changes to the number of DNA strands in a cell, a feature commonly observed in MDS). The second technique used was next-generation sequencing technology (NGS) to look at over 20 genes known to harbour mutations in up to 80% of MDS patients. They found that if a gene mutation or changes to the number of DNA strands could be detected in a bone marrow biopsy sample, it could also be detected in the PB sample of the same patient. Overall, they found that the same results could be obtained for both bone marrow biopsy and PB samples using these techniques (there was a 98% concordance in results, which is extremely high).

These are very promising results which demonstrated proof of concept that PB can be used as a substitute for bone marrow biopsies. The authors of the publication recommend the use of PB for follow-up checks and believe that PB sampling has many distinct benefits over bone marrow sampling.

The most obvious being the fact that the method is less invasive and virtually pain free, with little or no risk of infection. This allows for more frequent check-ups which in turn enables closer disease monitoring for better outcomes. The procedure is also quicker and easier to perform than a biopsy, and as no sedation is required, patients are also able to leave immediately with no recovery time required.

Aside from patient benefits there are also important advantages for hospitals too. The procedure is easier and quicker to carry out than a bone marrow biopsy, therefore does not require specialist staff and cuts down on procedure time. In some cases it may even free up hospital bed time and offer cost savings.

Additionally, once the PB sample is taken, it can be analysed relatively easily using the two testing techniques described by the research group. Both the SNP – Array karyotyping and 21st century sequencing techniques were semi-automated, reliable and provided robust results, making it attractive for hospital diagnostic labs to implement.

Although a bone marrow biopsy will always be essential for initial diagnosis, finding easier, less painful, yet still accurate and reliable ways to monitor MDS patients represents a major improvement. PB sampling could spare a large population of patients the need for repeat bone marrow biopsies, making the burden of their disease a little lighter, and allowing clinicians to follow patients more closely through more regular checks.

MDS UK – Note to patients

If you are not yet offered the choice of peripheral blood (PB) sampling during routine check-ups and would like more information about its use, please contact MDS UK. This is a fairly recent technology, therefore if your haematologist has not yet started using it please hand a copy of this article to him/her. We would be happy to provide more information directly to you and/or your haematology consultant.

MDS UK – Note to haematologists

Further details about this technology can be found via: Research paper in Leukemia.

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

Source: www.mdspatientsupport.org.uk / ResearchFORpatients
Author: MDSUK/Stephanie Brett email: mds-uk@mds-foundation.org twitter: @mds_uk

Original reference paper:
A M Mohamedali, J Gaken, M Ahmed, F Malik, A E Smith, SBest, S Mian, T Gaymes, R Ireland, A G Kulasekararaj, G J Mufti, High concordance of genomic and cytogenetic aberrations between peripheral blood and bone marrow in myelodysplastic syndrome (MDS)
Leukemia. 2015 Sep;29(9):1928-38

Clinician and Researchers Quotes

This research has provided us with the very important information that the genetic abnormalities found in the bone marrow of MDS patients are also detected in the blood. We already know that many patients acquire new genetic abnormalities during disease progression and it would therefore be possible to monitor for this on a blood sample. At present the main limiting factors for adopting this approach are the cost of these technologies as well as the complexity of analysing the data produced. The price will however fall over time and we will continue to simplify the data analysis process meaning that this has real potential for the future management of MDS patients. Unfortunately I don’t think this will replace the need for a bone marrow biopsy as this remains critical in confirming disease progression however it may allow us to detect changes early and determine when this procedure should be performed. Further research will be needed to find out if this can improve the overall management and outcome in MDS patients.

Dr Catherine Cargo, Consultant in Clinical Haematology, Haematological Malignancy Diagnostic Service (HMDS), Leeds Teaching Hospitals NHS Trust

From a clinical perspective, this study is the first of its kind to demonstrate the potential use of 21st century technologies in improving the management and treatment of human diseases, especially in a disease like MDS where the majority of the patients are of old age (> 70 years). This study has clearly shown that the genetic analysis that is usually performed on bone marrow biopsy can also be reliably done on peripheral blood, thus potentially eliminating the need for repeated painful and expensive bone marrow aspirations for disease monitoring. That being said, further larger studies involving multiple centres are needed to verify these results before being introduced into routine clinical practice. Although there are challenges that need to be addressed including the cost and the data management as well as interpretation of the results, however, this technological advancement has great potential for the clinical management of MDS patients and will also help in early intervention where disease progression is suspected.

Syed Mian, PhD, Research Associate (one of the authors of this research paper) Department of Haemato-Oncology, King’s College London

Currently only a handful of specialist laboratories are equipped to perform SNP-Array karyotyping or next generation sequencing mutation analysis in MDS. The number of centres tends to be small because these types of analysis are highly specialised, require the use of expensive, dedicated equipment and require highly skilled and experienced staff. These laboratories tend to be within specialised Haematological Malignancy Diagnostic Centers such as the service in Leeds Teaching Hospitals NHS Trust and my laboratory within King’s College Hospital London. The cost of these investigations is relatively high, however the amount of genetic information obtained using these methods is much greater and results in improved certainty of diagnosis. Some of these genetic findings are also useful for informing clinicians and patients about the likely course of the disease and can also influence treatment options in a way that the conventional methods may not. Here at King’s College Hospital we have been performing this next generation sequencing mutation analysis and SNP-array karyotyping in MDS for several years. We have performed analysis on hundreds of samples and these analyses are now available as diagnostic tests. Access to these analyses make replacement of some bone marrow biopsy samples with blood a reality for our patients.

Nicholas Lea, PhD, Clinical Scientist, Laboratory for Molecular Haemato-Oncology, Department of Haematology, King’s College Hospital London

Our study was designed primarily with the patient benefit in mind. Being a tertiary referral centre for MDS, there was a clear need to improve on existing methods in aiding patient diagnosis and enable frequent follow up of patients. The data is an extension of our earlier publication in the journal Blood (2013) and confirms the very high concordance of the genetic information obtained from the bone marrow and peripheral blood. I am delighted that MDS UK has taken the initiative to disseminate this information to the community so that patients may benefit from cutting edge research tools to help and with their MDS journey

Dr Azim M Mohamedali, PhD Senior Research Fellow, Department of Haemato-Oncology, King’s College London


Patients condemned to die: NHS denies funding for 2nd stem cell transplant

Anthony Nolan's Trust urged the Government to ensure every patient can access the treatment they need

Update 24 February 2017: NHS England reinstates funding to 2nd stem cell transplants thanks to your support! Read More Here

  • Stem cell transplants help cancer patients replace damaged blood cells
  • Procedure costs the National Health Service between £50,000 and £120,000 
  • But NHS decides to ban second transplant if disease comes back after first
  • Anthony Nolan Trust charity says 22 transplant patients relapse each year

In a joint letter to the Department of Health, Anthony Nolan Trust and some of leading names in British medicine have rallied against the new guidance, issued this month.

‘Without a second transplant, the small percentage of patients considered suitable for one will die of their underlying disease,’ said Professor David Marks, former president of the British Society of Bone Marrow Transplantation and one of 18,000 signatories, including dozens of specialists in blood disease, to a letter handed last week to Health Secretary Jeremy Hunt.

The treatment, which offers the best chance of survival to these patients, is given routinely in the US and Europe, and Prof Marks, director of the Bristol Bone Marrow Transplant Unit, says: ‘I know of no other first-world country where people with a 30 per cent chance of a cure are denied a transplant.’

Before 2013, patients in the UK eligible for a second transplant received one, but in that year NHS England (NHSE) began evaluating whether repeat transplants should continue to be funded.

For the past three years, doctors have had to submit individual funding requests. Some have been turned down, and NHSE has since declared second transplants ‘not currently affordable’.

Henny Braund, chief executive officer of British transplant charity the Anthony Nolan Trust, which co-ordinated the petition and is asking the public to write to their MPs, says: ‘This is a step backwards for patients.

How to be an Anthony Nolan bone marrow donor

Your animated guide to becoming a bone marrow donor. Steve Coogan narrates. Find out everything you ever wanted to know about donation, from joining the register to what happens if you are a match.

Calum's stem cell donation for Anthony Nolan

21 year old Calum's video diary of his blood stem cell (or bone marrow) donation via PBSC.

A transplant costs between £50,000 and £120,000, but the cost of caring for one patient refused a transplant in the past few years was £130,000 for the year they survived, and for another patient who survived three years it was £160,000.

‘Of those who do get a second transplant, one in three survive at least five years, and many are young people leading fulfilling lives and making a contribution to society. Denying those patients a chance of life amounts to a death sentence.’

One of those presenting the protest petition last week was acute myeloid leukaemia sufferer Emily Wellfare, who was told in December she would die if she did not get a second transplant. 

She said: ‘My consultant at the Royal Marsden Hospital told me it would be the only thing that could save my life.  'He mentioned he would have to apply for funding, and it never occurred to me it could be refused.’

In February the 25-year-old from Eastbourne was given the shocking news that the application had been refused. 

‘My doctors said the hospital was going to give me the transplant anyway. I am so grateful they fought so hard for me, but I want to know why the NHS thought my life wasn’t worth fighting for,’ added Emily.

She was in the second year of a law degree course when she started suffering from incessant coughs and colds in early 2012. In April that year she was diagnosed with acute myeloid leukaemia. 

After chemotherapy, Emily spent a year in remission before discovering at her routine one-year check-up that her leukaemia had returned. 

She was told she would need a transplant of stem cells – a procedure once called a bone-marrow transplant.

Cells, taken from a donor, grow in the bloodstream and make healthy blood cells to replace a patients’ own damaged ones.

Emily had her first transplant in February 2014, following three more rounds of chemotherapy.

After nearly two further years in remission, it was discovered at the end of last year that Emily’s cancer had returned again.

Since having her second transplant on March 14, Emily has been well but has to take steroids, antibacterial and anti-fungal drugs and immuno-suppressants.

Emily was luckier than another patient, a 21-year-old from Nottingham, who was rejected for a second transplant. 

Dr Jenny Byrne, honorary consultant haematologist at the city’s university hospital trust, said: ‘It was extremely disappointing and frustrating, given that we have plenty of patients in Nottingham who have had second transplants and are long-term survivors, fit and well and cured.’ 

A spokesman for NHS England said: ‘The procedure isn’t being funded this year because its low clinical benefit and high cost meant that it compared poorly with other new treatments which have been considered for funding this year.’

He added that individual funding requests would be considered where exceptional need and benefit could be provided, and the policy would be reconsidered in 2017.

However, Dr Byrne said: ‘It is not true to say that individual funding requests for transplants are getting consideration because they are routinely screened out by administrators who claim the cases are not sufficiently unique, and it is impossible to demonstrate the level of exceptionality that is called for.’

A Department of Health spokesperson said: ‘Funding decisions around treatments such as these are rightly for NHS England. We have referred the decision to them.’


MDS World Awareness Day – 25th of October 2015

2015 MDS World Awareness Day: Video Stories

25/10/2015
Some of our true champions for MDS awareness have shared their stories with us. Watch their video clips and share them in support of MDS World Awareness Day 2015!

Emma Paine: What happens when you need a second transplant?

Emma is an MDS patient.  She had a first stem cell transplant in 2011 – and recovered well.  Until now.

She is currently in hospital having chemotherapy and urgently needs a second transplant.
BUT – funding for second transplants is being revised in the UK – due to “cost-effectiveness” issues.
18 months ago, Emma would have received her potentially life-saving transplant without a problem.
Given the current NHS financial crisis, and new clinical data on the success of 2nd transplants after a relapse, the Dept of Health has tightened the rules relating to this procedure – and hospitals all over the UK need to seek special funding requests for those patients (IFR=Individual Funding Requests)

To date it is not certain whether Emma will receive the transplant or not.
Click here to follow Emma blog about her experience and her battle to be granted a further chance to live: Emma’s Fight against MDS

Raising awareness of mds day #mdsworldawarenessday #mdsukpatientsupportgroup

Posted by Emma Paine on Sunday, 25 October 2015

Olivia, Tilly and Ellis Hepburn make an appeal

Olivia, Tilly and Ellis, MDS super heroes and children of Lisa and Gavin Hepburn, are making an appeal for people to donate blood and stem cells to save lives of people like their Dad, who has MDS.

Lisa told us: “Today is MDS Awareness Day. Three years ago we hadn’t even heard of this disease. That’s why today is so important to make people aware. We are so grateful to the person that gave Gavin his donated bone marrow, and to the endless people that donate blood. To everyone that has helped, supported and been a shoulder to cry on these past years we are so grateful to you too…”

Their wonderful clip has already been viewed over 12,000 times on Facebook. Please keep sharing it! Thank you – on behalf of the entire MDS community.

Today is MDS Awareness Day. Three years ago we hadn’t even heard of this disease. That’s why today is so important to make people aware . We are so grateful to the person that gave Gavin his donated Bone Marrow, and to the endless people that donate blood. To everyone that has helped, supported and been a shoulder to cry on these past years we are so grateful to you too …

Posted by Lisa Hepburn on Sunday, 25 October 2015

 

 

 

5 ways you can help to raise awareness about MDS

We are asking all patients, families, clinical staff, supporters to post photos or short video clips of themselves on all social media platforms, to raise awareness of this rare blood cancer MYELODYSPLASTIC SYNDROME.

 

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wad poster 2015

 

All our colleagues and friends worldwide will be doing the same and will post messages online on the 25th October. See our Facebook page for more clips, and photos and the MDS Alliance website for links to all international groups marking MDS Day.

 https://www.facebook.com/MDS-UK-Patient-Support-Group-123295287687778/

www.mds-alliance.org


1. Record and share a video clip. You can use the message below as an example:

Hello – my name is ……. I am an MDS patient.
(or I am an MDS Supporter – son/daughter/spouse/brother/sister/parent/friend/colleague/neighbour of an MDS patient).
Please share my message in support of the rare blood cancer MyeloDysplastic Syndromes – and the MDS World Awareness Day on 25th October.
Please support the MDS UK Patient Support Group and the international MDS Alliance.
Help to register more stem cell donors and blood donors.
Be a star.
Thank you.

2. Share these messages of MDS patients and supporters with your family and friends

It’s #MDSWorldAwarenessDay tomorrow. Please click on my video to see how you can help! #MDSUKPatientSupportGroup

Posted by Jenny Milne on Saturday, 24 October 2015

 

 

3. Share all photos and videos using the hashtag #MDSworldawarenessday

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4. Organise a coffee morning or tea afternoon to show your support and use the posters below

PDF poster MDS WAD POSTER A4 Oct2014

PDF version: WAD2015

Take your photo with the posters clearly visible!

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5. Share your photos with the poster. Some lovely ones below

 

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World Awareness Day 2015

 

World Awareness Day 2015

 

 

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Survey in Europe – Measuring Quality of Life

London School of Economics Survey about how quality of life is measured and reported in Health Technology Assessments (HTA)

28/05/15

Another survey for patients and carers to take part.

HTA organisations, such as for example NICE (National Institute for Clinical Health and Excellence) mostly use a questionnaire called the EQ-5D to measure the impact of an illness.  From our experience with MDS patients, we have found this EQ-5D questionnaire inadequate to reflect the various issues faced by our group of patients.  This survey is an opportunity to test and evaluate this widely used questionnaire.
We therefore welcome this survey and project – and encourage you to take part – both patients and caregivers/carers.
Thank you.

Here is the official invitation, background and links to the survey:

The London School of Economics (LSE) is leading an EU-funded research project, Advance-HTA, looking at aspects of health technology assessment (a method used to determine where and how new treatments should be introduced into a national healthcare system). The goal is to work with a range of stakeholders to explore how the methods used in HTA can be improved to better meet the needs of both patients and modern healthcare systems.  There are 13 institutions involved in the research from a number of EU countries and North America.

One area of particular interest is the way in which patients’ experience in quality of life is measured.  Currently, a tool called EQ-5D-5L is used but there is considerable discussion about how well this reflects the aspects of health-related quality of life that matter to people living with an illness.

We are asking patients with a range of illnesses, from a number of countries, to complete a short questionnaire aimed at finding out ‘Does EQ-5D-5L accurately and reliably reflect the aspects of their health that matter most to patients?’.  This is important because it will help ensure that the things that matter to patients are at the heart of future decisions about access to medicines.

FOR PATIENTS
The questionnaire will take approximately 5minutes to complete and can be found at the following link:
https://lse.qualtrics.com/SE/?SID=SV_abftZRBx9Sj4N1P  

FOR CAREGIVERS
Another version of the questionnaire has been developed to capture the responses of the caregivers who are providing support and care for patients. If you know any family members and friends who are caring for a patient, please provide them with the following link to complete the questionnaire: https://lse.qualtrics.com/SE/?SID=SV_9sM3VwpFLDT1xVH

Each questionnaire must be completed in one sitting and all responses are anonymous.

If you are involved in a patient organisation, please consider posting the links to the surveys on your organisation’s website.  If you know other patient organisations in Europe, please do forward them the links. The more completed questionnaires we receive, the more reliable the results will be.

Thank you very much for taking the time to complete the questionnaire and support this important piece of research.  More information about the project and the institutions involved can be found at http://www.advance-hta.eu.

Kind regards,

LSE signatures

LSE banner

 


TV programme on rare diseases

TigressProdblackTigress Productions looking for volunteers for programme on rare diseases – 28/05/15

We have been contacted by a TV production company – Tigress Productions – who are looking for patients with a rare disorder – and had problems getting diagnosed.
MDS would be ideally suited for this, as many patients often take a while to be diagnosed, despite odd blood results or symptoms.
If you are interested in taking part, and would be willing to talk about your diagnosis experience on camera, please get in touch with the production team.
They are looking for up to 3 people for this documentary.

Here are further details about the programme:

Tigress Productions has just started to produce a new six part series for a terrestrial broadcaster with the working title ‘Medical Mysteries’.  Each programme will follow the personal journeys of people who have suffered from or are in the process of trying to diagnose/treat a medical mystery.

The aim of the series is to raise awareness about lesser known ailments, showcase revolutionary new treatments, and also show our audience in detail how the diagnosis process works – often patients are left wondering why their GP has taken a certain course of action; rare conditions offer us the opportunity to follow a doctor thought process from beginning to end.

The mystery doesn’t have to be that mysterious – it just has to pose a specialist with a number of options in terms of finding a diagnosis.  A key aspect of this programme will be the detective story – how a consultant or GP have interpreted the symptoms, the tests that they have chosen and why.

Tigress Productions would like to speak to people with medical mystery experiences for a new TV documentary series.

Please call 0117 933 5654/ 0117 933 5609

or email medical@tigressproductions.co.uk  for more information

A bit about us; Tigress Productions, part of the Endemol Group, are producers of inserts of The One Show (BBC1) and other shows as Winter Viruses and How To Beat Them (BBC2) and Africa 2013: Countdown to the Rains (BBC2).

https://www.tigressproductions.co.uk


New Deputy Chairman at MDS UK

MDS UK has a new deputy chairman – 21/05/15

3marathons-mdspicWe are very happy to announce the election of Russell Cook as a new Deputy Chairman for MDS UK.
Russell has been a Committee Member since 2014, then Trustee and Director since early 2015.

Russell had a life-saving stem cell transplant 3 years ago, to treat MDS – Myelodysplastic Syndromes.  The stem cell donor was his son Luke. Russell has since ran several marathons and organised several brilliant fundraising events for MDS UK.

We very much welcome him in his new role, and look forward to continued work with him.
You can read more about Russell on our Committee webpage
And on our Patient story page.

John TaylorcvsummaryJohn Taylor – who was our Deputy Chair to date has stepped down from the role due to health reasons – but will remain on the Committee as a trustee, in an advisory capacity due to his in-depth knowledge of the Charity Commission regulations.
We take this opportunity to thank John for his excellent work – and are most grateful for his continued guidance and advice going forward.
More information on John Taylor here

 

RT-Mail articlecropOur current Chairman – Rodney Taylor – is continuing in his role.  He is gradually recovering from the stem cell transplant he received in July 2014.
As MDS patients will know – recovery from a stem cell transplant is a slow and often very tiring process.  Rodney is therefore stepping back slightly and temporarily, whilst Russell will cover the work in his new role of deputy chairman.
We wish Rodney continued best wishes with the recovery – and hope to welcome him back very soon.

More information on Rodney on our Committee page – as well as on our treatment information page – under azacitidine – which he received for over 4 years – until he stopped responding to this drug and needed to have the stem cell transplant.  Read here.

 

MDS UK is also calling for new volunteer trustees.

If you are interested in applying for such a post – please check the following link in the first instance:  Trustee role – What’s involved

MDS UK would like to hear from you, in particular if you are an MDS patient yourself, or connected to an MDS patient in some way.
Please contact us by email or letter, explaining why you wish to be considered as a trustee and how your skills or experience may benefit the charity.
We may then contact you by phone and request relevant references.

Please email: swintrich@mds-foundation.org

Or write to:
Sophie Wintrich
MDS UK Patient Support Group
Haematology – Bessemer Wing
King’s College Hospital
London SE5 9RS

We are also looking for a Newsletter Editor

If you have good knowledge of MDS, and/or the healthcare industry, and enjoy proof-reading – we would like to hear from you.
Our newsletter goes out twice a year to all our members and most of the haematology departments in the country.
See all our Newsletter here.

Chris Dugmore-Essex GroupOur current Newsletter Editor – Chris Dugmore – is stepping down – as she is about to become a Grandmother twice over.
Chris is staying on as a Committee Member however – and of course as coordinator of our Essex MDS patient group.

We’d like to thank her profusely for her fantastic work with the last 5 newsletters.  We regularly have great feedback from patients, carers and staff – thanks to her great input.
We wish her all the best in her Grandma role and hope all goes extremely well with both births!

Please email: swintrich@mds-foundation.org

 

 


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