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‘Latest developments in MDS diagnostics & treatments’ – a presentation by Dr Beth Payne

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Dr Beth Payne is a consultant haematologist at UCLH 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 Patient Support Group called 'Latest developments in MDS diagnostics & treatments' in July 2023.  

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. 

JCVI recommends eligible groups for Autumn 2023 COVID-19 booster programme

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The Joint Committee on Vaccination and Immunisation (JCVI) has announced the eligibility criteria for who can receive a COVID-19 booster vaccine in Autumn 2023. Speaking on behalf of the JCVI, Professor Wei Shen Lim, who leads the committee on COVID-19 immunisation, outlined the objective of the autumn booster initiative.

"The autumn booster programme will continue to focus on those at greatest risk of getting seriously ill. These persons will benefit the most from a booster vaccination."

JCVI has advised on the specific groups to be offered the booster vaccine this Autumn 2023

    • 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

For more detail, follow the link to the official press release from gov.uk   Further advice on the start dates of the programme and the choice of vaccine products for use this autumn will be provided in due course.

Support Joe Thomas running 103 miles for MDS UK!

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This is an utterly awesome challenge! On the 5th August Joe will be attempting the North Downs Way 100, a 103 mile (yes 103 mile, 167km!) ultramarathon to raise awareness of and money for MDS UK. 

Pete and Joe Thomas

MDS Patient Support

Last August, Joe’s family were rocked by the news that Joe’s dad, Pete Thomas, was diagnosed with Myelodysplastic Syndromes (MDS).

“Fortunately our family has had incredible support from MDS UK, an extraordinary charity that provides invaluable help and support to patients like my Dad, keeping them abreast of clinical trials and promoting awareness of the disease."

Joe is taking on this amazing challenge to help other MDS  & CMML patients get the support they need from MDS UK Patient Support Group.

North Downs Way 100 -  a 103 mile continuous trail 

The North Downs Way 100 ultramarathon starts in Farnham in the Surrey hills and ends in Ashford in Kent. In addition to covering the distance, Joe will have to tackle an ascent of 11,000 ft (3350m) - more than climbing the largest mountain in England, Scotland, and Wales combined, as well as running through the night in order to try and beat the 30hr cut-off time!

MDS Patient Support

Joe's training

When Joe took on the daunting 103-mile race, he'd only taken part in a 5K run back in 2018. Determined to conquer this new challenge, he embarked on seven months of rigorous training. In February, he completed a full marathon, covering 26.2 miles in just 3 hours and 54 minutes. Not stopping there, Joe further pushed his limits in May, finishing a 50-mile qualifying race in 11 hours and 7 minutes, securing his spot for the ultramarathon on August 5th.

MDS UK extends a heartfelt thank you to Joe Thomas. We are deeply grateful for his efforts in taking on this amazing challenge to support MDS & CMML patients.

Please Donate to support Joe Thomas in his incredible ultramarathon

‘CMML Diagnosis & Treatment’ – a presentation by consultant Dr. Daniel Wiseman

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Dr Daniel Wiseman is an Honorary Consultant Haematologist at The Christie, NHS Foundation Trust, Manchester, and has great expertise in treating patients with CMML (Chronic Myelomonocytic Leukemia). This is a recording of a Zoom presentation he gave to the MDS UK Patient Support Group called  'Perspectives on CMML: Diagnosis & Treatment.'  Following the presentation, there are Q&As between Dr. Wiseman and a group of patients.  The session was chaired by Chris Dugmore, Trustee, Volunteer Coordinator and Local Patient Support Ambassador (Essex region).

Dr Daniel Wiseman, Honorary Consultant Haematologist at The Christie, NHS Foundation Trust, Manchester

MDS Patient Support

Dr Daniel Wiseman is an Honorary Consultant Haematologist at The Christie and a Clinician Scientist with a research group based at the CRUK (Cancer Research UK) Manchester Institute/Manchester Cancer Research Centre. He was awarded a Clinician Scientist grant from Bloodwise to research myeloid malignancies, and the Oglesby Leukaemia Clinical Research Fellowship to establish a research programme for Chronic Myelomonocytic Leukaemia (CMML), in Manchester. At the same time he was appointed an Honorary Consultant in Haematology at The Christie, where he leads the Myelodysplasia (MDS) service and is Principle Investigator on several MDS and related clinical trials.

Need help with Zoom? Get free support from AbilityNet

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MDS Patient Support

Easily join Patient Zoom Meetings with free tech support from AbilityNet

At MDS UK, we host online Patient Support Meetings and Specialist Speaker Meetings throughout the year, featuring leading experts in MDS and CMML. As we've moved our meetings to Zoom, we recognise that some people may need help adapting to this technology. That's why we've linked up with with AbilityNet, a charity that provides IT support and guidance, including help with Zoom. Find out more below.

Guides on how to use Zoom recommended by AbilityNet

How to Use Zoom for the first time

This guide, provided by Age UK, gives step-by-step instructions on using Zoom for the first time. It covers all the essential aspects; equipment needed, how to download the Zoom app, and how to join meetings. There are also troubleshooting tips for enabling video and audio, and adjusting settings if needed.

Download 'How to use Zoom for the First Time'

How to use Zoom on a tablet

This guide has step-by-step instructions on how to use Zoom on a tablet.

Download 'How to use Zoom on a tablet'

Easy Steps on how to join your first Zoom meeting

This YouTube video gives you a simple steps on how to join your first Zoom meeting.

Watch 'Easy steps on how to join your first Zoom meeting'

Get free help accessing technology with AbilityNet

AbilityNet, can help you with more than just Zoom.  It's a UK charity that promotes access to digital technology for all. They offer free resources, volunteer support, and expertise on many aspects of digital technology.

 

  • You can call their free Helpline on 0800 048 7642 to get help with using technology or adapting it to meet your needs.
  • Browse their factsheets, blogs, webinars and videos  to get step-by-step instructions on how to use different aspects of technology.
  • My Computer My Way is AbilityNet's unique guide to the many, simple adjustments that can be made on your computer, tablet or smartphone to make them  easier for you to use.
  • Find out about their network of volunteers who can support you remotely or visit you in your own home to help with everyday technology needs.*

*Requesting free tech support from AbilityNet in your own home

If you'd like to access this service, you'll need to complete the Request free IT support form on their website. Every volunteer is DBS checked (Disclosure and Barring Service) and can help with all sorts of information technology challenges. (When you complete the form, please select 'Another charity/organisation' and type in 'MDS UK'. This will help AbilityNet know that we have referred you to them.)

NICE decision: Evusheld treatment not approved for NHS use in the UK

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MDS Patient Support
On May 5th, the National Institute for Health and Care Excellence (NICE) confirmed their decision not to approve Evusheld for use on the NHS in the UK. This means that, currently, Evusheld will not become available on the NHS in the UK.

The reason given is that, although initial clinical trials showed promise in preventing serious Covid infections in immunocompromised and vaccine-nonresponsive people, more recent laboratory studies report that Evusheld may not effectively prevent infection with most of the variants currently circulating.

The report states

“Because of the lack of evidence of clinical effectiveness, the cost-effectiveness estimates for tixagevimab plus cilgavimab (Evusheld) are highly uncertain. They are also likely to be much higher than what NICE considers an acceptable use of NHS resources”.

MDS UK recognises that many of our members will be very disappointed with this outcome and we will be working with other Blood Cancer charities, through the Blood Cancer Alliance, to determine what can be done to improve protection for the affected groups.

*** From 14th June 2023 Evusheld is not available as a Covid treatment in Scotland. For more information click here ***

For more information

Fundraising Successes April 2023

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MDS Patient Support
We want to thank Kulwinder Aujla, Claire Philpott, Andrew Humphries, and Ashleigh Venables for their wonderful fundraising efforts for MDS UK last month. Completing the 2023 London Marathon and Glasgow Kiltwalk (despite the rain!) is truly amazing.

Ashleigh's Glasgow Kiltwalk

Our fundraiser, Ashleigh Venables, braved the rain and joined 13.500 other walkers for a 24-mile Glasgow Kiltwalk on April 30th to support MDS UK, raising over £700 for our charity.  Ashleigh said:

‘It was such a wonderful experience I would love to do it again. Bands played every few miles, Lidl provided great snacks and the cheer squad kept the mood bright despite the rain’  

The Kiltwalk is an annual Scottish event taking place across four cities throughout the summer, offering a variety of distances to cater to everyone. If you would like to join the Aberdeen, Dundee, or Edinburgh walks this summer, follow the link to our Kiltwalk 2023 page for more information.

 

Kully Aujla, Claire Philpott & Andrew Humphries ran the TCS London Marathon 2023 for MDS UK!

 We are so proud of Kully Aujla, Claire Philpott and Andrew Humphries who completed the marathon with excellent times. Andrew finished the race in 2.48 min while Kully and Claire were very close to each other at 4.21 and 4.19.

Kulwinder Aujla (Kully)

Kully ran the marathon in memory of her mum Joginder Sandhu.

The Marathon fell on the date of what would have been my Mum, Joginder Sandhu's, 70th birthday.  I wanted to mark the date and do something special. 

 

MDS Patient Support

Russell supporting Kully in the London Marathon 2022

Claire Philpott

Claire Philpott from Twickenham won a place in this year's marathon.  She came to a Bearcat running club event last year hosted by our patron, Caitlin Limmer and Hugh Brasher, Events director of London Marathon and son of Chris Brasher, co-founder of the marathon and Olympic gold medalist.  Claire had previously entered the ballot 15 times before so was completely delighted when she won the place.  

Claire said:

'Caitlin was the reason I was lucky to be fulfilling a dream last April, it seemed fitting to raise awareness about MDS and hopefully some money to help them continue to support Caitlin and others.' 

Andrew Humphries

Andrew ran the marathon in memory of his grandfather, Basil

Andrew Humphries said: 

My dear grandpa, Basil, lived with Myelodysplasia (MDS) for the last few years of his life. He was a wonderful man who was incredibly sociable speaking to anybody who came across his path, and he would always be able to offer some truly great advice for any problem you might have. I am raising money for the MDS UK Patient Support Group to help this great charity continue their work in raising awareness of MDS.

MDS Patient Support

The great Sir Mo Farah running his final London marathon this year

Thank you 

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

A special thank you also to our patron Caitlin who met everyone at the expo as she worked on the information point and to Russell Cooke and Ashleigh who went to cheer on the runners in the rain.   If you would like to join any of our cheer squads, do please get in touch via fundraising@mdspatientsupport.org.uk. It makes so much difference to our fundraisers, to have support on the day as they complete their fantastic challenges.

Although we have not been able to secure places for 2024 we would love for those who join the ballot and get an own place to run for MDS UK.  If you'd like to run for for MDS UK or want ask any questions, please do reach out to our Fundraising Manager, Ashleigh Venables, via email at fundraising@mdspatientsupport.org.uk.

 

NHS updates guidance on COVID-19 treatments for those at highest risk (from March 2023)

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MDS Patient Support

The NHS website has updated information from March 2023 on Covid-19 treatments for those at highest risk. The key changes are:

 

• If you have MDS, CMML, or have undergone a stem cell transplant, you'll need to use a rapid lateral flow test issued by the NHS because PCR tests are no longer available.
• You then have to report your COVID-19 rapid lateral flow test result on GOV.UK   (Note - you can't report a result from a privately bought test on GOV.UK)
• If you were previously told that you're eligible for Covid treatments, the NHS should contact you automatically but, if that doesn't happen, you can contact your GP, 111, or hospital specialist for advice.
• It's also worth noting that the drug treatments currently available have changed due to recent evidence about the effectiveness of some previous treatments on the Omicron variant.

You can find more information on the NHS website

Most vulnerable to be offered Spring 2023 COVID-19 booster

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The Joint Committee on Vaccination and Immunisation (JCVI) has confirmed its advice for a 2023 spring coronavirus (COVID-19) booster programme offering a vaccine top-up for over-75s, immunosuppressed and residents in care homes for older adults.

In England

Spring 2023 Covid-19 booster programme

  • In England, Spring boosters will start on Monday 17 April 2023 and end on Friday 30 June 2023.
  • The national booking system will open on Wednesday 5 April 2023.

 

The GOV.UK website states

You should be offered an appointment between April and June, with those at highest risk being called in first. You will be invited to have your booster around 6 months from your last dose but you can have it from 3 months. If you are turning 75 years of age between April and June, you will be called for vaccination during the campaign, you do not have to wait for your birthday.

For more information visit the gov.uk page on the Covid-19 Spring booster programme in England.   or click below to read the leaflet

Leaflet Guide to Spring 2023 COVID -19 Booster for England

 

In Scotland

Spring 2023 Covid-19 booster programme

  • In Scotland, if you're eligible, spring booster appointments are being offered between 11 April and 30 June 2023.

 

For Scotland the NHS Inform website states

The timing of your appointment is based on clinical advice and the gap since your last dose. This is to maximise your protection over spring and summer. If you need to rearrange your appointment, you may need to choose a later date. Please ensure your rearranged appointment is after 11 April. More appointments will be added in the coming weeks. If you can't find a suitable appointment now, you can check the online portal or phone the helpline at a later date.

For more information follow the link below to download the Leaflet Guide for Scotland

Leaflet Guide to Spring 2023 COVID -19 Booster for Scotland

 

Wales and Northern Ireland

  • Wales and Northern Ireland, dates are likely to be similar – but no confirmation has yet been sent yet.
  • There will also be an Autumn 2023 booster – that will be delivered in a similar way to this upcoming Spring 2023 booster.

Covid 19 UK Inquiry into the 500k Forgotten immunocompromised patients

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The APPG for Vulnerable Groups to Pandemics UK Inquiry has released their report this month into the Forgotten 500k Immunocompromised Patients.

Evusheld for the UK, a patient campaigning group who working tirelessly to get Evusheld available in the UK, said on their #forgotten500k Facebook group

"This is one of the most significant documents produced to date as it really highlights the multiple and significant failures by the Government in its handling of the pandemic.  The APPG will be sending this document out to all MP's across the house and also the DHSC. Please help us spread this document far and wide. We need you to share this with your MP's too, Media, Charities, Clinicians and anyone you think needs to know. We need to get it out there."

Click the title or image below to download the report.

MDS UK endorses the statement made by Evusheld for the UK and continues to try to raise awareness for the need for Evusheld, a Covid-19 preventative treatment for people who are immunocompromised.

Of the half a million immunocompromised people in the UK, many are still shielding,  still in isolation, unable to work, see friends or hug loved ones.  Evusheld, the treatment that could help protect them against Covid, has been denied to them by the UK Government, despite being approved in 32 other countries.

MDS and CMML patients are still forced to be extremely cautious with no particular reassurance, nor any further research available to show that it is safe for MDS and CMML patients to be exposed to COVID-19.

Instead, our patients just hear about more COVID-19 cases amongst their friends, neighbours, colleagues, families. The relative health of MDS and CMML patients is too fragile to take any risks. Surely, a drug like Evusheld would offer some extra peace of mind for groups of patients who have put their lives on hold for the last 3 years. For some high-risk MDS patients, whose prognosis can be even less than 3 years – it is utterly unfair – when an improvement could be so easily available.

You can help

From the Get Evusheld website

AstraZeneca’s Evusheld is a preventative (“prophylactic”) treatment for Covid, approved for UK use on the 17th March 2022. However, there has been no progress since then on the drug’s accessibility on the NHS or privately. This has prolonged the shielding imposed on so many of us across the UK. Our group exists for one purpose: to get this drug introduced in the UK with access for all those who need it.

Visit www.getevusheld.uk/500k  to make the Government act today.

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