this must be archive.php

The emotional impact of a diagnosis of MDS or CMML – by Surabhi Chaturvedi

Written by

 

Below is a video presentation by Surabhi Chaturvedi, senior psychotherapist and service lead for the Haemato-Oncology Psychological Support Team at King's College Hospital, London. She spoke to the MDS UK Support Group about the emotional impact of a diagnosis of MDS or CMML and gave strategies for coping and living well.

Coping with a diagnosis of MDS or CMML

Topics covered include:

  • Everyone is different and at different places
  • Adjusting to the diagnosis
  • Worry, stress and anxiety are normal
  • Myths and false expectations of emotional well being
  • Exploring self compassion
  • Ways of coping with uncertainty
  • Softening our beliefs
  • The importance of peer support
  • Where to get help

About Surabhi Chaturvedi

MDS Patient Support

Ms Surabhi Chaturvedi is the senior Psychotherapist and service lead for the Haemato-Oncology psychological support team at King's College Hospital. 

Surabhi Chaturvedi is an integrative psychotherapist with a background in clinical psychology. She leads a team of psychological therapists in a leading Haematology, Stem Cell Transplant, and Cellular Therapies unit in King’s College Hospital, London. The unit provides psychological support to patients and families affected by blood cancers and bone marrow failure, and offers training on psychological care of Haematology patients.

Where to get help

Surabhi mentioned various resources in her presentation, including the following:

  • Calm  An app to help you manage stress and anxiety, get better sleep, and feel more present in your life.

 

  • Headspace  An app to offering evidence-based meditation and mindfulness tools, to help you create life-changing habits to support your mental health

 

  • Jon Kabat-Zinn - Full Catastrophe Living - Jon Kabat-Zinn is an American professor emeritus of medicine and the creator of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School. He is best known for developing Mindfulness-Based Stress Reduction (MBSR), a program that integrates mindfulness meditation into mainstream medicine and health care. His seminal book, Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, provides a comprehensive guide to using mindfulness to cope with stress, pain, and illness, drawing from his extensive experience in meditation and healthcare.  Full Catastrophe Living - is also available as an audiobook on Audible.

 

 

 

 

  • NHS Talking therapies  You can access talking therapies for free on the NHS. You can refer yourself directly to an NHS talking therapies service without a referral from a GP.

 

  • Maggie's  Maggie’s is a charity that provides free expert care and cancer support in centres across the UK and online

New study/early-phase trial for High-Risk MDS and Acute Myeloid Leukaemia (AML)

Written by

MDS Patient Support

To be conducted by Dr Mili Shah and Dr Victoria Potter of King's College Hospital, London, and Professor Robert Wynn of Royal Manchester Children’s Hospital.

 

This upcoming study will focus on the use of expanded cord blood stem cells, alongside granulocytes (a type of white blood cell) in both adults and children with high-risk blood cancers, in particular very high-risk Myelodysplastic Syndromes and Acute Myeloid Leukaemia.  These cancers are incredibly difficult to cure, and even with a stem cell transplant long-term survival rates can be low, therefore this is a priority area for researchers.

The aim of this particular study is to increase the successful outcome of stem cell transplants in high risk patients.  Early studies using expanded cord blood suggest it may improve outcomes, and with the addition of granulocytes (which have shown encouraging results so far in an ongoing clinical trial with children with very high-risk disease) it is possible that a combination of the two methods will provide the best chance of preventing the disease from recurring post-transplant.

Introductory online meeting about the study June 27th 6pm

If you'd like to learn more about this study the clinicians are hosting an introductory online meeting on Thursday 27th June at 6pm.  Please email milinaresh.shah@nhs.net or robert.wynn@nhs.uk and they will send you a short questionnaire to complete.

 

 

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

Written by

MDS Patient Support

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'

MDS Patient Support

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

Written by

How to get your Covid-19 vaccine this autumn 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

Written by

 

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

Written by

 

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

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. 

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

Written by

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

Download 'Navigating a post-pandemic world: A guide for immunocompromised blood cancer patients

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!

Written by

MDS Patient Support

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

Written by

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

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.