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Defend against Neutropenic Sepsis

MDS Patient Support
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
MDS Patient Support
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. Basically this card, (or it could be a form) gives you priority access for hospital admission and treatment, should you show signs of fever or develop flu-type symptoms.  It is worth raising the subject of getting a 'Neutropenic Sepsis Pathway' 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.


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

 

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

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!

 

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.


Covid-19 Treatment Update

MDS Patient Support

Those of you who have been told you are eligible for Covid treatments, should you test positive for Covid, should have received a recent NHS notification from Sir Stephen Powis about changes to how this treatment will be obtained;

Key points are:

  • This change takes effect from June 27th 2023
  • From this date, you will no longer be automatically contacted by NHS when you register a positive Covid Test on the NHS website
  • Instead, you should contact either
    • your GP
    • 111
    • or your hospital specialist

so that they can consider referring you for an assessment for treatment.

You can also now use tests purchased from a pharmacy or shop.


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

 

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

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.

How to use Zoom on a tablet

This guide has step-by-step instructions on 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.

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

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

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. 

 

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)

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


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