this must be archive.php

Dedicate a star in memory of a loved one on the MDS UK Christmas Tree

Written by

Dedicate a star in memory of a loved one

Join us this festive period and dedicate a star or light in memory of a loved one or add a dedication to someone special you are thinking about. Our stars symbolise hope, a loved one thinking of you and happiness.

While there's no obligation to donate when creating a dedication, it's easy to donate and we would truly appreciate it.

Simply, click on the tree, choose a star of your choice and make a donation. All money raised will support MDS UK and those living with the condition in the UK.
Wishing you a happy Christmas.

Covid lateral flow tests for the immunocompromised:  now available from pharmacies

Written by

Covid-19 lateral flow test - free from chemist for immunocompromised
Access arrangements for Covid-19 tests have recently changed.  Eligible patients - which includes those with CMML and MDS – can now get free lateral flow tests (LFTs) at their local chemist, as these can no longer be ordered through the government website or via NHS 111.
You can either pick the tests up yourself or ask someone to do it for you.  You (or your representative) will need to take proof of eligibility, which can be your letter of diagnosis, or any consultant or GP letter which mentions your condition and/or the supportive care you are receiving.  It is possible your regular pharmacy may already have a record of your condition, but it’s worth taking proof just in case.

 

For more information

See 'Treatments for COVID-19 - NHS' (www.nhs.uk) for more details.

‘Lifestyle medicine for improving health & wellbeing’ – a presentation by Dr Shireen Kassam

Written by

 

Dr. Shireen Kassam MB BS, FRCPath, PhD, DipIBLM is a Consultant Haematologist and Honorary Senior Lecturer at King's College Hospital, London. She is is also a certified Lifestyle Medicine Physician and is passionate about promoting the benefits of plant-based nutrition for the prevention and reversal of chronic diseases and for maintaining optimal health after a cancer diagnosis.
In this video Dr Kassam presents a 35-minute introduction to evidence-based Lifestyle Medicine. She explores how it can empower individuals living with MDS, offering practical actions to enhance health and well-being.  The session was chaired by Maureen Sturrock, Local Patient Support Ambassador (Scotland region).

Dr Shireen Kassam, consultant haematologist and Honorary Senior Lecturer at King’s College Hospital, London and a certified Lifestyle Medicine Physician.

Top 5 Wellness Tips

Written by

Photo by Brett Jordan on Unsplash  

Just a reminder from us here at MDS UK, to get in tune with a few tips to increase and maintain a balanced and healthy lifestyle. Remember to tailor solutions to your needs and seek medical advice from your CNS/GP to fit your individual requirements. 

Nutrition  

Most people have their favourite dish which they could easily have a few times a week, whether it’s a very green salad or a super cheesy lasagne, the key is balance. Remember to limit processed and sugary food and drinks.  

Keep fruit, nuts, and seeds as part of your intake, as well as whole grains, healthy fats, vegetables and water. It’s also important be mindful of portion sizes. 

Watch out! During the colder months, we see a variety of new hot drinks and snacks brought to the menus of our favourite places. As amazing as a “Sweet Caramel Crunch Cake and Vanilla, Hazelnut and Chocolate Wonder Latte” sounds, be mindful of the sugar in the powders and syrups – they can be sneaky! Try to opt for more herbal teas than sugar- filled temptations.  

Photo by Taylor Kiser on Unsplash  

Movement  

We’re not saying to run uphill every day, but it’s important to get moving! To support a healthy brain and improve bone and muscle strength, incorporate some movement into your daily routine. This can include walking, stretching, swimming, cycling, or badminton. It’s key to keep up with having good circulation, coordination, concentration, improved mood, and reflexes. 

Photo by Lucas van Oort on Unsplash  

Rest  

Not getting enough sleep? Make it a priority to adjust your routine before bedtime. Although it is tempting and very easy to end up watching 2 seasons back-to-back, when you’re done, it could be 4am. Yikes!  

Consider setting a wind-down alarm to remind you to start getting ready for bed. Let’s say you want to be in bed for 9pm, try to start your night routine at 7:30/8pm to give yourself enough time. During this time, instead of watching television, maybe read a few pages of a book and have tea instead of sugary snacks. 

Sleep helps with improving your memory, weight management, creativity, concentration, and the feeling of being energised.  

Quality of sleep is important too, not just the eight hours. For example, drinking too many liquids before bed could have you heading to the bathroom multiple times throughout the night! 

Photo by Rehina Sultanova on Unsplash  

Hydration  

Seeing as the body is made up of approximately 60% water, it makes sense that we make sure to get enough of it. You don’t need to be severely dehydrated in order to feel the effects. 

Constipation, brain health and levels of energy are all affected by water, try to have one litre of water a day – but avoid having a bulk of water in the evening to save you from the midnight trips to the bathroom! 

As the festive season approaches there may be more booze available at dinner than usual, but still remember that you need adequate water. 

Photo by Kobu Agency on Unsplash  

Hobbies  

This is a great way to relax at any time of day, meet new people and develop a skill. Hobbies can help you to avoid the feeling of being bored or engaging in habits that don’t support you having healthy, balanced life.  

You can search for clubs and groups in your local area to meet others with similar interests, such as chess or painting classes. You could try puzzles, model building collecting items, dance class or hiking adventures.

Photo by Rifqi Ali Ridho on Unsplash  

September 2023 is Blood Cancer Awareness Month

Written by

The MDS Alliance is raising awareness of myelodysplastic syndromes (MDS), a rare group of blood cancers. This year's campaign targets patients, healthcare professionals, and the general public and aims to highlight awareness about; MDS symptoms, diagnosis and treatment options, and self-management of the disease.

About Myelodysplastic Syndromes

For more detailed information, explanations, videos or to download our patient handbook 'Understanding Myelodysplastic Syndromes', see What is MDS?
The cause of MDS remains largely unknown although there are many research groups around the world who are trying to improve our understanding of why it occurs and in whom.

What are the symptoms of MDS?

If you spot the symptoms of MDS, take next actions quickly. 

MDS is difficult to diagnose so by raising awareness of the signs and symptoms and taking action to get a blood test, the campaign aims to improve diagnosis.  As with all cancers, fast action enables faster diagnosis and better treatment. For more see MDS Symptoms

If you notice the signs or symptoms above, Get a #BloodCount

If you feel you have the symptoms outlined above, you can get a very simple bloodtest at your local GP called a full or complete bloodcount.

A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. If you see the signs and symptoms, get a complete #BloodCount

 

Complete Blood Count test

How is MDS diagnosed?

Click or tap the arrows to see the slides.
For more see MDS Diagnosis

How is MDS treated?

Click or tap the arrows to see the slides.
For more see MDS Treatments

How can others support people with MDS?

The NHS Blood Donation website  explains how to become a blood donor; where you can give blood, about the donation process, and how to make an appointment. It's such a worthwhile thing to do, and really does save and improve lives.

Visit the Anthony Nolan website to find out more about how to donate bone marrow, and how to join the stem cell register (it’s easy!)

Download a brochure about MDS

Download brochure about MDS

For more information, download the A5 brochure about MDS from the MDS Alliance.

Congratulations to our amazing team MDS UK who ran the iconic Great North Run!

Written by

The start was very hot which made running tough but our Great North Run team made great time. Thankfully all our runners were through before biblical rain hit the site. It certainly was a memorable day.

Fiona Christie and Chris Newton

Fiona from Turiff and her brother Chris from North Berwick ran for their Mum, Marion who was diagnosed in 2012. 

"We are both delighted to be running in the Great North Run 2023 for MDS UK. Our Mum was diagnosed with MDS in 2012 and gets ongoing support and information from MDS UK. The Great North Run is extra special for us as it takes place in Newcastle which is our dads hometown, (Howay the lads (&lassies)) Mum & Dad are both coming down to support us on the day and it will be amazing to have them along with us and see them when we cross the finish line 🖤"

Fiona's race time - 02:06:01

Chris' race time - 02:00:18

 

Carol Archer 

Carol (in the red) is from Sunderland and is a friend of our acting CEO Debbie Hickman and her late husband Neil. 

Carol's race time - 02:36:39

James Law 

James ran for his dad Colin Law

"Unfortunately my dad has MDS and so I've chosen to do the GNR to raise funds for the charity that is providing him with help and support. I hope that you can support me, him and the charity also with a kind donation!"

James' race time - 01:57:50

Richard Kadar 

Another fantastic race run by Richard (after raising over £2,000 from a run back in 2022.)

Richard's race time - 01:49:16

Thank you 

We would like to extend our heartfelt thanks to all our runners. Your hard work and commitment to MDS UK Patient Support is greatly appreciated and makes a huge difference to the lives of those affected by MDS and CMML.

If you would like to join the 2024 team, please get in touch. Registration is free and minimum sponsorship is £375 - contact Ashleigh Venables at fundraising@mdspatientsupport.org.uk

 

Flu & COVID-19 vaccines brought forward to September 11th 2023

Written by

The Flu and COVID-19 vaccine programmes will start earlier than planned this year, on September 11th, because of the emergence of a new COVID-19 variant, BA.2.86.

This is a precautionary measure as BA.2.86 is not currently classified as a variant of concern, but advice from UK Health Secretary Agency suggests that speeding up the autumn vaccine programme will give greater protection, supporting those at greatest risk of severe illness and reducing the potential impact on the NHS. Health secretary Maria Caulfield explained,

"As our world-leading scientists gather more information on the BA.2.86 variant, it makes sense to bring forward the vaccination programme...It is absolutely vital the most vulnerable groups receive a vaccine to strengthen their immunity over winter to protect themselves and reduce pressure on the NHS."

Flu and COVID-19 vaccines will be offered together

The annual flu vaccine will also be made available at the same time, wherever possible, to ensure people are protected ahead of winter.

Specific groups to be offered the booster vaccine from September 11th 2023 are (as outlined by the The Joint Committee on Vaccination and Immunisation)
    • residents in a care home for older adults
    • all adults aged 65 years and over
    • persons aged 6 months to 64 years in a clinical risk group, as laid out in the Immunisation Green Book, COVID-19 chapter (Green Book). (Please note, this applies to all people with MDS and CMML).
    • frontline health and social care workers
    • persons aged 12 to 64 years who are household contacts (as defined in the Green Book) of people with immunosuppression
    • persons aged 16 to 64 years who are carers (as defined in the Green Book) and staff working in care homes for older adults.

For more information from gov.uk

NHS England will announce full details of the accelerated roll-out soon, and those who fall into higher-risk groups are being encouraged to take up the jab as soon as they’re invited. For more detail, follow the link to the official press release from gov.uk 

MDS World Awareness Day 2023

Written by

 

What is MDS World Awareness Day?

Every year on October 25, we come together with the MDS Alliance and others, to raise awareness of Myelodysplastic Syndromes (MDS).
Join us and support the campaign on behalf of MDS patients globally. There are lots of ways you can get involved; whether it's wearing one of our T-shirts for the day, sharing vital information about MDS signs and symptoms through social media, or by donating to MDS UK.  Whatever you can do will go towards improving the lives of MDS patients 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

Join us!

1 - Like and share our posts on social media using the hashtags below, and tag @MDSUK

 

Hashtags
#MDSWAD2023
#thinkMDS
#Bloodcount

Tag us @MDSUK

2 - Download and print posters to put up in your local community

Click or tap on any of the thumbnail images below to download a poster for your local GP surgery or supportive care setting.

 

Download a poster about MDS for MDS World Awareness Day 2023

Bruising

Breathless

Weakness

Fatigued

3 - Donate to MDS UK on our Just Giving page

All funds, no matter how modest, are always welcome, every few pounds can truly make a big difference.

MDS UK Patient Support Group raises awareness of MDS, offers support and information to patients and families, campaigns to improve quality of life and make treatments available to those affected by Myelodysplastic Syndromes. Please donate to our Just Giving page.

 

REPAIR-MDS – a ground breaking clinical trial for low/intermediate risk MDS

Written by

A new diagnosis of low/intermediate risk MDS can be shocking – hearing you have cancer, that it's life limiting and that there are very few treatments available, may well be distressing. Often, the only real option for patients is to return home and 'watch and wait' until the next appointment, usually three months away. The REPAIR-MDS trial offers a chance to get involved in one of two new experimental treatment options.

What is the REPAIR-MDS trial?

REPAIR-MDS is a ground-breaking clinical trial that aims to improve the symptoms and overall quality of life for patients with low/intermediate risk Myelodysplastic Syndromes.  Patients will be put randomly into one of two treatment groups below. Both groups will be using drugs which are already used safely for other diseases (Repurposed drugs). 

Treatment Group 1 VBaP - Sodium Valproate (V), Bezafibrate (Ba), Medroxyprogesterone (P) 

Treatment Group 2 : Danazol.  

The study is trying to find out if these ‘repurposed’ drugs can be used to treat MDS patients and to improve their blood counts, reduce their need for transfusions, improve their quality of life, and prolong their survival.

Who can participate?

Patients aged 18 years and over diagnosed with lower-risk MDS, who have either not been suitable for erythropoietin injections (EPO), have not responded or stopped responding to EPO, or they have a low neutrophil and/or platelet cell count.

Where are the trial sites?

The trial is taking place throughout the UK, is coordinated by the University of Warwick’s Clinical Trials Unit and will be open in around 30 hospitals and aims to recruit 120 patients.

Follow the link to the REPAIR-MDS website for a regularly updated list of REPAIR-MDS trial sites

What if my hospital isn't a trial site, is there a way I can participate? 

Please let your clinical team know that you are willing to consider any relevant trials. As a patient you can ask your clinical team to review you for any clinical trial and consider opening the trial to recruitment at your hospital. If this is not possible, as not every trial or study is right for every hospital, you can ask for a referral to a recruiting centre where the trial/study is open to recruitment for consideration. This can be using established referral pathways, or outside of your usual NHS Trust partnerships if you decide is it is feasible and something you wish to pursue.

What's the trial duration?

September 2020 - June 2025

 

Interested? 

To find out more about what's involved, who to contact, and get more information, visit the trial website below.

REPAIR-MDS Trial Website

The REPAIR-MDS trial website which has regularly updated information about who to contact, trial eligibility criteria, trial sites and more.

REPAIR-MDS Central Management Team

Dr Stephen Jenkins is Lead (Clinical) Chief Investigator on the REPAIR-MDS trial and consultant haematologist at Russells Hall Hospital, Dudley.

Dr Manoj Raghavan is Deputy (Clinical) Chief Investigator on the REPAIR-MDS trial. He is a consultant haematologist based at the Centre for Clinical Haematology.

Professor Janet Dunn is Co-Chief Investigator & Professor of clinical trials & head of cancer trials at - Warwick Clinical Trials Unit.

Sophie Gasson is a PPI Research Fellow at Warwick Clinical Trials Unit.

A brief introduction to REPAIR-MDS from Co-Chief Investigator Dr Manoj Raghavan

Watch the recorded webinar on the REPAIR-MDS Clinical Trial from February 13th 2023

Defend against Neutropenic Sepsis

Written by

Photo credit Ian Taylor on Unsplash  

Neutropenic sepsis is a life-threatening condition that needs urgent treatment. If you or your caregiver suspect neutropenic sepsis, contact your medical team for advice. If it is out-of-hours, treat it as an acute medical emergency and call 999 immediately. 

What is neutropenic sepsis?

Neutropenic sepsis is a reaction to an infection, which can happen in patients with neutropenia (a low level of neutrophils in the blood). Neutrophils are a type of white blood cell that work as part of the immune system to fight infection. Having neutropenia makes it harder for the body to fight infection. Neutropenic sepsis is potentially life-threatening and needs urgent medical attention.

Patients most at risk of neutropenic sepsis

Patients are most at risk if they have:

  • severe neutropenia (defined as an absolute neutrophil count of less than 0.5 × 109/L)
  • long-term neutropenia
  • a quick decline in neutrophil count.

Causes of neutropenia

Possible causes of neutropenia include:

  • bone marrow disorders, such as myelodysplastic syndromes (MDS), CMML and aplastic anaemia
  • treatments that suppress the immune system, such as chemotherapy or immunosuppressant drugs
  • stem cell transplantation

Neutropenic sepsis symptoms

If you have any of the following symptoms of infection, you should contact your medical team immediately, no matter how minor or vague the symptoms seem:

  • Fever over 38°C, or a low temperature under 36°C
  • Chills/feeling cold
  • Shivering
  • Flu-like symptoms
  • Reports of feeling generally unwell
  • Agitation
  • Paleness (pallor)
  • Blotchy skin
  • Skin rash
  • Cold and clammy skin
  • Fast heartbeat
  • Quick breathing
  • Feeling confused or dizzy
  • Nausea and vomiting
  • Diarrhoea
  • Passing no urine in a day
  • Changes in behaviour
Photo credit by Anton on Unsplash 

What to do if you suspect neutropenic sepsis

Seek treatment immediately.  If you or your loved one show any of the signs or symptoms listed above (no matter how minor or vague the symptoms seem), it's vital that you treat it as an emergency and seek treatment as quickly as you can.  

  • Call 999 and tell them the patient is neutropenic and you suspect sepsis 
  • Contact the patient’s medical team for advice 
  • Try to keep calm  

If you feel you're not being heard, don't be afraid to be firm. Even very slight symptoms may require urgent treatment and must not be ignored as infections can develop rapidly.

The National Institute for Healthcare and Excellence (NICE) states

"Management of a person with suspected neutropenic sepsis should include implementation of the 'Sepsis Six' bundle of care within the first hour following recognition of sepsis."
Read more in the NICE Clinical Knowledge Summary on Neutropenic Sepsis 

The NHS website explains the 'Sepsis Six' bundle of care developed by the UK Sepsis Trust.

  • "The UK Sepsis Trust developed the ‘Sepsis Six’ – a set of six tasks including oxygen, cultures, antibiotics, fluids, lactate measurement and urine output monitoring- to be instituted within one hour by non-specialist practitioners at the frontline. The Sepsis Six Care Bundle as a whole has been shown to reduce the relative risk of death by 46.6 per cent when delivered to patients with severe sepsis within one hour.

Why is neutropenic sepsis such a threat for blood cancer patients? 

Having a compromised immune system is often a problem for patients with MDS and CMML, sometimes due solely to their disease, but particularly if receiving chemotherapy or immunosuppressant drugs. During some treatments, white blood cell counts are lowered, meaning the patient’s immune system is compromised and he/she is more susceptible to infection.

Neutropenic Sepsis Pathway

When they first diagnose neutropenia, a patient’s clinical team should clearly explain the risks of neutropenic sepsis, and what to do if it is suspected.  They may give the patient (or their caregiver) a form or card headed ‘Neutropenic Sepsis Pathway’ which explains the procedure which is specific to that NHS Trust.  It is worth raising the subject with your Clinical Nurse Specialist or Consultant if they haven’t already discussed this with you, so you can be prepared in any emergency.

Neutropenic sepsis should be treated quickly with intravenous antibiotics, but time is of the essence as these need to be administered as soon as possible.
(See NICE guidelines https://www.nice.org.uk/guidance/cg151)

What steps can MDS/CMML patients take to minimise the risk from neutropenic sepsis? 

  • Wash hands regularly and thoroughly
  • Clean cuts and scrapes immediately with clean water and an anti-septic
  • Do not handle animal waste – cat litter boxes etc
  • Store and cook food carefully
  • Take care of oral hygiene
  • Do not share plates/cups or toothbrushes with other people
  • Avoid changing the water in flower vases
  • Avoid people who have infections or who are sick. 
  • Avoid crowded places like public transport, festivals and shopping centres. 
  • Wear protective gloves when gardening and doing housework. 
  • Keep a thermometer somewhere handy – ideally a digital thermometer which gives a quick, accurate reading. 

Neutropenic sepsis – Pam and Tony’s story

Our latest patient story, generously relayed by Pam (surname supplied) to MDS UK Patient Ambassador, Chris Dugmore, is a heart-rending and cautionary account about potential failings, miscommunications and unnecessary delays in getting the right treatment for Pam’s husband, Tony.  Sadly, Tony’s MDS progressed to Acute Myeloid Leukaemia and he died at home in March 2023, after three months of unsuccessful hospital treatments for multiple infections.  Pam wanted their story told to highlight the real and constant threat neutropenic sepsis presents to blood cancer patients.

Free donations by shopping