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MDS UK attend British Society for Haematology (BSH) annual scientific meeting

Lead researcher Blossom Bell & Support Ambassador for Scotland, Maureen Sturrock

In late April, MDS UK attended this year’s British Society for Haematology (BSH) annual scientific meeting in Liverpool.

This three-day, annual event brings the professional haematology community together, to listen and learn from each other, and transform the care BSH members provide to those affected by haematological conditions  

Our main aim of attending was to increase awareness of MDS UK in the wider blood cancer community, by highlighting the support we offer and the difference this can make to their patients. Since many people find us through referrals from their consultant or nurse, it's crucial that we raise awareness of MDS UK within the clinical community.

Over the three days our stand was visited by many health professionals, particularly by those treating MDS and CMML patients. Our literature was well received and stocks of our newly revised MDS Guide and Patient Information Booklets soon disappeared, with additional orders to fulfil once we got back to the office.    

Maureen Sturrock delivering her presentation 'Patient Power – B positive in A negative situation'

Maureen Sturrock

Maureen also used the opportunity during her presentation to emphasise the benefits of support groups for patients - patient support being a “hot” topic that came up time and again during the event. There was even a dedicated session called 'The Patient Support Groups' – where four patients shared their own blood cancer journeys, highlighting the huge benefits they gained through engaging with support groups, and what type of support they found most valuable.     

The main aim of the patient support session was to highlight to professionals all the reasons why they should signpost patients to support groups like ours. An aim achieved, as the session attendees were asked if they were more likely to refer patients to support groups because of the session, and their response was 100% yes. Interestingly, after this session our MDS stand experienced an influx of visitors and patient literature requests - that alone made the trip to Liverpool worthwhile!  

In summary, our attendance at this years’ BSH achieved our main aim, to increase MDS UK awareness among professionals and distribute our literature so patients receive copies at time of diagnosis. Moreover, it highlighted the importance of professionals understanding the benefits of support groups from the patient’s perspective.

With that in mind, we would like to hear from you! 

We want to understand what we're doing right at MDS UK and where we can serve you better.  Whether you're a patient, caregiver, or family member, by sharing your thoughts in our 'MDS UK Survey 2024', your insights will help us offer better support and introduce new services that benefit you.  We invite you to join a one-time interview, either online via Microsoft Teams or by phone. We'll explore your support needs, understand your experience with MDS UK, and identify areas for improvement.  For more information and to register your interest in participating, click the orange button below.


Spring Covid-19 booster available for the immunocompromised from April to June 2024

This spring, COVID-19 booster vaccines will be made available to people aged 75 years and older, residents in care homes for older people and those who have compromised immune systems (Please note, this applies to all people with MDS and CMML).

How to get a Covid-19 Spring booster appointment

Appointments will be offered between April and June, prioritising those at highest risk. Your booster dose will typically be scheduled around 6 months after your last vaccination, but it can be given as early as 3 months.

Your GP may send you an invitation, alternatively, you can locate your nearest walk-in vaccination site or find out more ways to book via the NHS website.

More information from gov.uk


See gov.uk for their 'Guide to the spring 2024 COVID-19 vaccination campaign'

 


‘Don’t wait for your final 40 minutes’: Watch the inspiring TEDx talk by our patron Caitlin Limmer

 

Through her years of dedication to the MDS Patient Support Group, Caitlin has been been instrumental in raising both awareness and crucial funds for MDS UK.  As Patron, she has made a huge positive impact for MDS patients, doctors, researchers and the MDS community as a whole.

In her captivating TEDx talk, Caitlin implores us all to seize life's opportunities and to embrace every moment with passion and purpose. Caitlin's journey is a testament to the power of resilience, having overcome formidable challenges, including running 18 marathons, swimming ultra-marathons and cycling the Prudential 100 Ride London on a tandem bike, among a myriad of other impressive achievements.

Caitlin's story is not just one of triumph over adversity; it's a beacon of inspiration, urging us all to live life to the fullest, cherishing every moment.

'Don't wait for your final 40 minutes' by Caitlin Limmer

More on Caitlin Limmer



‘Latest developments in stem cell transplantation’ by Dr Beth Payne

 

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. This is a recording of a Zoom presentation she gave to the MDS UK Support Group on the 'Latest developments in stem cell transplantation - 2024'.

Dr Beth Payne is a consultant haematologist at UCLH

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. 


‘Navigating a post-pandemic world: A guide for immunocompromised blood cancer patients’

Navigating a post-pandemic world - a guide for immunocompromised blood cancer patients, from ICBCC (International Covid-19 Blood Cancer Coalition)

The International Covid-19 Blood Cancer Coalition (ICBCC) has made a major contribution in supporting immunocompromised blood cancer patients by publishing a downloadable patient booklet called "Navigating a Post-Pandemic World: A Guide for Immunocompromised Blood Cancer Patients" in 2024.

Despite the decreasing significance of Covid-19 for the general population, people with weakened immune systems, (such as patients diagnosed with MDS & CMML), continue to face elevated risks. This ongoing vulnerability can profoundly impact their daily lives.

According to the ICBCC website, the booklet aims to

"help you live a better quality of life and empower you when making decisions. Ultimately, the booklet will help immunocompromised blood cancer patients navigate and manage the risks arising from the combination of a compromised immune system and possible COVID-19 infection. The recommendations may also be applicable to other types of infection."

Download the booklet (click on the image or the red link below)

The booklet covers:

  • Managing risk
  • Improving outcomes: Act proactively
  • Staying vigilant and recognising the symptoms
  • Psychological support and well being
  • Accessing support services and reliable sources of information

More about The International Covid-19 Blood Cancer coalition (ICBCC)

International COVID-19 Blood Cancer Coalition (ICBCC) is a multi-stakeholder coalition consisting of representatives from the global patient advocacy and clinical community to address the specific impact of COVID-19 on immunocompromised blood cancer patients (both acute and chronic). For more see the ICBCC website.


Luspatercept – lobby your local MP!

Luspatercept (also known as Reblozyl) is a drug widely used in the US, EU, Australia and Canada to treat MDS patients.

It was expected to be available in the UK by now, but last year the manufacturer, Bristol Myers Squibb, withdrew its application to NICE for licensing in the UK.  The reasons for this are unclear but believed to be commercial.

Luspatercept can be beneficial for MDS patients, especially those with a particular sub-type, and BMS’s decision to withdraw was a blow to the blood cancer community.

One of our members, Angela Wilson, has successfully lobbied her local MP, Chancellor and ex Health Minister Jeremy Hunt, who has personally agreed to take this up with current Health Minister Victoria Atkins.

Campaign for Luspatercept in the UK


To lend your voice to this campaign you could lobby your own local MP. We've drafted a letter you may like to use which you can download from here.


Shingles vaccine: now available from age 50 for the immunocompromised

Shingrax Shingles vaccine for the immunocompromised 2024

 

The shingles vaccine is now available for those aged 50 and over with a suppressed immune system - which includes those with MDS and CMML. Your GP surgery will usually contact you when you become eligible but speak to your GP if you haven't yet been contacted.

 

What is the Shingles vaccine for?

The NHS website states

Shingles is a common condition that causes a painful rash. It can sometimes lead to serious problems such as long-lasting pain, hearing loss or blindness. You're more likely to get shingles, and it's more likely to cause serious problems, as you get older or if you have a severely weakened immune system.

The shingles vaccine helps:

•reduce your chances of getting shingles

•reduce your chances of getting serious problems if you do get shingles

For more on shingles see https://www.nhs.uk/conditions/shingles/ 

 

Shingrix non-live vaccine

People with weakened immunity receive the non-live vaccine, Shingrix, which involves two doses given 8 weeks to 6 months apart. For more information see Shingrix vaccine patient leaflet (Electronic Medicines Compendium website; PDF only, 136kb)

Important

You can get shingles more than once, so it's important to get vaccinated even if you've had it before. Don’t delay. If you are eligible, try to have your vaccine as soon as possible.

For more information



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

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

 

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

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  

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