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Share Your Story: Covid – Five Years On

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MDS Patient Support

Five Years On: share your lockdown stories! 

It’s hard to believe it’s five years since Boris Johnson appeared on TV telling us “you must stay at home”, and the UK, along with much of the world, was put into lockdown.  Most of us had little idea at that point how our lives would play out over the coming months, while the world shifted in ways we could never have anticipated.  We shielded the clinically-vulnerable, fashioned PPE out of bin bags and masks out of duvet covers, home-schooled our kids and created offices in kitchen cubbyholes.  We took socially-distanced walks, banged saucepans for key workers, attended appointments in near-deserted hospitals, and gagged on those horrible throat swabs.  Yet many also found time for peace and reflection, to take a step back from busy lives and re-evaluate their priorities. 

We want to hear your story... 

What are your memories of life under lockdown?  We’d love to read them, and to share them here (with your permission of course). 

Send them to us at info@mdspatientsupport.org.uk, with ‘Five years on’ in the subject line. 

Anything between 100 and 500 words is fine.  Photos welcome too!  We’ll start the ball rolling with a few of ours. 

We look forward to hearing from you!

New therapies & advancements for low-risk MDS by consultant haematologist Dr. Beth Payne

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Dr Beth Payne is a consultant haematologist at University College London Hospital and an associate professor at University College London, who specialises in the treatment of MDS and bone marrow failure. The recording below is a of a Zoom presentation she gave to the MDS UK Support Group on March 5th 2025 on ' New therapies and advancements in treating low-risk Myelodysplastic Syndromes (MDS) to improve patient outcomes'.

Watch: Dr. Beth Payne’s presentation, "New Therapies & Advancements for Low-Risk MDS,"

Dr. Beth Payne, consultant haematologist at UCLH

MDS Patient Support

Dr Beth Payne specialises in the treatment of MDS and bone marrow failure. She undertook her PhD at the Dana-Farber Cancer Institute, Harvard Medical School in Boston USA, studying molecular aspects of MDS and AML and ribosomal protein mediated disorders. She was awarded an Advanced Clinician Scientist Fellowship by Cancer Research UK. 

Get your Will written for free this March!

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MDS UK Free Wills Month 2025
Free Wills Month runs every March and October, and gives people the chance to write or update a simple will for free with participating UK solicitors. There’s no pressure to leave a gift to charity, but many choose to, helping fund vital work.

MDS UK free Will writing service

MDS UK have partnered with solicitors Darwin Gray to offer members and supporters the opportunity to create a free basic will, or mirror wills for couples. For complex wills, additional costs may apply.

 

Download our free 'Gifts in Wills' guide 

If you're interested in leaving a legacy gift to MDS UK, you can download our 'Gifts in Wills' guide which outlines the support that MDS UK provides, the different ways you can leave a legacy, our commitment to you and the essential details you’ll need if you’re considering leaving a gift to us.

If you have any questions

If you'd like to talk to us or have any questions relating to leaving a gift in your Will please contact our Fundraising Officer, Ashleigh Venables, by email at fundraising@mdspatientsupport.org.uk

Alternatively you can call us on 020 7733 7558

Cancer 52 alliance releases ‘State of the Nation’ report on rare and less common cancers

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Cancer 52 State of the Nation report 2025

What is Cancer52?

Cancer52 is an alliance of over 115 patient charities that advocate for people with rare and less common cancers in the UK. Their goal is to improve diagnosis, treatment, and support for people affected by these cancers.  MDS UK is delighted to represent all those affected by MDS and CMML as active members of the Cancer 52 alliance.

 

New report on Rare and Less Common Cancers 

The alliance released a report on Tuesday, 4th February, World Cancer Day 2025, called 'State of the Nation report on Rare and Less Common Cancers: Learning from patients and partners.'

 

Click on the image to download the report

Key priorities in the report

Key priorities outlined in the report include the need to:

  • Reduce deaths by tackling health inequalities,
  • Drive earlier diagnosis of rare and less common cancers,
  • Create a new national taskforce with patient involvement at its core

The report also draws on insights from Cancer52's patient survey, highlighting the broader impact of rare cancers, the importance of early diagnosis, and patients’ experiences of care and support.

More information

  • Find out more about Cancer 52 and the work the the alliance does from the Cancer 52 website 

Used NHS Talking Therapies? Share your experience in a short survey to help NICE improve services

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MDS Patient Support

Have you used NHS Talking Therapies? NICE wants to hear from you!

If you've accessed NHS Talking Therapies, we encourage you to share your experience in the survey below. Your feedback will help NICE (National Institute for Health and Care Excellence) understand your experience of using digital technologies before pre-assessment (also known as triage).

Take the survey here

It takes about 15 minutes to complete, and the deadline is 12 PM on Friday, 7th February 2025. Rest assured, your responses are completely anonymous. NICE won't ask for personal details like your name or location. Any identifiable information will be removed before the data is analysed.

For any questions, please contact erin.whittingham@nice.org.uk

More information

MDS UK funds Vitamin B5 tests to support a clinical trial aiming to relieve MDS-related anaemia

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Vitamin B5 Study

MDS UK is delighted to be funding the development of an assay (a range of tests) to measure Vitamin B5 (Pantothenic acid) levels in patients. This follows up on a study that demonstrated Vitamin B5's role in restoring red blood cell production in MDS patient cells.

 

In 2023, Dr Kevin Rouault-Pierre (Barts Cancer Institute, Queen Mary University of London) and his research team published a ground-breaking study in the Science Translational Medicine journal, illustrating that Vitamin B5 can rescue defects in the production of red blood cells in patients with MDS.  Where the initial study was conducted using cells in a laboratory setting, this next phase will be patient-focused, with the aim being to determine the optimum dosage levels and formulation required to increase red blood cells. This will feed a funding application for a clinical trial to reduce the frequency of blood transfusions and alleviate anaemia-driven chronic fatigue. 

In order to translate this research from bench to clinic, Dr Kevin Rouault-Pierre, in collaboration with Dr Onima Chowdhury from Oxford University Hospitals, and supported by MDS UK, are preparing an application to fund the clinical trial. This effort is sponsored by Birmingham University Cancer Research Clinical Trials Unit, with the aim of applying to fund the clinical trial in 2025 and will get underway in early Spring 2025. 

As well as providing the funding for this exciting study, we will be helping facilitate the trial’s PPIE requirement (Public and Patient Involvement and Engagement).  We will be launching the study soon in an online event, invitations will go out to members by email (if you are a member but not receiving regular emails and newsletters from us please email admin1@mdspatientsupport.org.uk to ensure you are subscribed).

The Vitamin B5 Study Clinical Trial Team

MDS Patient Support

Dr Kevin Rouault-Pierre is group leader and a Reader in Stem Cell Biology and Diseases at the Barts Cancer Institute, Queen Mary University of London. 

MDS Patient Support

Dr Shoshana Burke is a Clinical Research Fellow in Dr Rouault-Pierre’s laboratory and a clinician at the Barts Health NHS Trust.

MDS Patient Support

Dr Onima Chowdhury is a consultant haematologist in the Haematology department at Oxford University Hospitals where she looks after patients with myeloid malignancies. She is also a clinical lead in the diagnostics laboratory.

For more information 

 

 

If you would like to help us fund more research and trials like this please consider donating either a single amount or a small monthly donation by clicking the button below.

MDS Patient Support
MDS Patient Support
MDS Patient Support
MDS Patient Support
MDS Patient Support

Dedicate a star in memory of a loved one

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Join us this festive season to dedicate a star in memory of a loved one or someone special. While donations aren’t required, even a small gift can make a big difference to those living with MDS & CMML. Wishing you joy this Christmas!

Click on the image below to dedicate a star.

MDS World Awareness Day 2024

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MDS Patient Support

Thank you for joining us and supporting our campaign!

Every October 25th, we come together with the MDS Alliance to raise awareness about MDS, and it’s your enthusiasm and support that help bring our campaign to life.

A huge thank you to everyone who participated—whether by wearing red, completing the MDS Alliance Global Survey, or generously donating to the MDS UK Patient Support Group. Your efforts are truly appreciated and make a real difference in improving the lives of those affected by MDS worldwide.

Why raise awareness?

Rare diseases like MDS often get misdiagnosed, forgotten or ignored. By raising awareness and sharing information, the hope is to

  • enable early detection and treatment of MDS by making people aware of the signs and symptoms. As with all cancers, fast action enables better treatment

  • foster understanding among the public about the challenges MDS patients face

  • help people to have more informed conversations with their healthcare professionals enabling access to specialist care when needed

Going Red for MDS: Thank you for making a difference!

There's still time to make a difference—take the 2024 MDS Global Survey!

 

The MDS Alliance is conducting their 2024 Global MDS Survey, and they want to hear from you. Whether you’re a patient or caregiver, your input is invaluable.  Your feedback will help highlight common challenges, unmet needs, and regional differences in MDS care, enabling the MDS Alliance to advocate for better healthcare policies, improved access to treatments, and increased support for those living with MDS. Your voice will make a difference—thank you in advance for sharing your experiences.

Donate to MDS UK Patient Support Group

 

MDS Patient Support
MDS UK are the only UK-based support group dedicated solely to informing, supporting, and empowering people affected by MDS & CMML. We raise awareness of MDS & CMML, offer support groups, a support phone-line and information to patients and families. We also campaign to improve quality of life and make treatments available to those affected by Myelodysplastic Syndromes.  As a small charity, we rely on the kindness of supporters like you to continue our vital work. We keep our running costs low, ensuring every penny directly benefits those affected by MDS and CMML, funds life-changing research, and improves the quality of life for patients and their families.  Every donation makes a big difference, thank you.

Send us your ideas for next year's MDS World Awareness day!

It’s never too early to put your thinking caps on for next year’s MDS World Awareness Day. If you have any ideas on how we can make an even bigger impact in raising awareness, we’d love to hear them. Feel free to email us at info@mdspatientsupport.org.uk to share your thoughts.

Thank you 

.

How to get your Covid jab this autumn 2024

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How to get your Covid-19 vaccine this autumn 2024

Who is eligible for a COVID-19 jab this autumn?

This autumn, COVID-19 vaccines will be available

  • for people aged 65 and over
  • who have compromised immune systems (this applies to all people with MDS and CMML)
  • residents in care homes for older people
  • front-line health and social-care staff.

How to get an appointment

NHS Covid booster appointments will be available between 3 October and 20 December 2024. Eligible people will be contacted directly, but you can also book your own appointment from 23 September via the NHS App GPs, pharmacies, walk-in clinicsor by calling 119. Anyone also entitled to the flu jabwill be offered this at the same time.

More information 

For region-specific information, visit:

Professor Lord Darzi’s report on the NHS

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Professor Lord Ara Darzi, a renowned surgeon and health policy expert, has contributed several key reports on the UK National Health Service (NHS), with his latest being the 'Independent Investigation of the National Health Service in England - September 2024'

Lord Darzi’s report doesn’t pull any punches, it is a clear and digestible call-to-arms, concluding ‘the NHS is in a critical condition, but its vital signs are strong’.

 

Lord Ara Darzi report on the NHS September 2024

Major takeaways for us from the report are the need to empower patients and give them a stronger voice, to increase psychological support, and to push for earlier cancer diagnoses, all of which chime with our own aims, and those within the wider blood cancer community.

 

More information