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NHS is running out of blood: Service declares first ever ‘amber alert’ amid dwindling supplies

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NHS Give Blood logo

Blood can only be stored for 35 days

NHS Blood and Transplant (NHSBT) has declared an amber alert on its blood stocks which are running dangerously low, and a call is going out for people to make emergency donations.

Nationally, there is less than two days' supply of O negative blood — the universal type which hospitals are reliant on in emergencies.  Unless supplies get back on track quickly, the NHS Blood and Transplant service could upgrade the situation to a 'red' alert, which could see all but the most serious emergency surgeries cancelled.

NHSBT say maintaining stocks has been a challenge in the wake of Covid, partly due to fewer people visiting collection centres in towns and cities.  Staff sickness because of the virus has also led to cancellations so NHS staff are being moved to the front line to open up more appointments.

NHS Blood and Transplant blood stocks are critically low - if you're fit and healthy, please make an emergency donation now

Call NHS Blood and Transplant on 0300 123 23 23 to book

As the situation is so urgent, the phone lines are unusually busy so you may have to wait a while to get through - but do hang on, you will get through and they will book you an appointment.

Or visit the NHS Blood and Transplant website

Due to the urgency of the situation, the NHS Blood and Transplant website can also become very busy so they have implemented a queuing system. If the website is too busy you will see a page like the image below. It will give you an indication of how long you will have to wait to get online. Do be patient, you will get online eventually - alternatively you could try calling number above.

Book an appointment to give blood at NHS Blood and Transplant
NHS Blood donation website queuing system

What does a shortage mean for MDS sufferers?

About 70% of all patients suffering from Myelodysplastic Syndrome are anaemic and become blood transfusion dependent during the course of their disease. Since their anaemia is “refractory”, they are in need of regular blood transfusions, with many requiring red blood or platelets several times per month, to stay alive.

Severe anaemia causes extreme fatigue, breathlessness, dizziness, and – if no action is taken, death, if the blood levels drop critically low.

MDS patients – please ask your healthy relatives and friends to become or remain a volunteer donor. Please spread the word about the urgent need to help stop the threat of low blood stocks worldwide. Please talk about it around you.

 

Blood Cancer Awareness Month – Weakness #ThinkMDS

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September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.

#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (particularly Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.

Blood Cancer Awareness Month 2022 - Weakness #ThinkMDS

Blood Cancer Awareness Month 2022 - #ThinkMDS

Muscle weakness is one of the signs of MDS.

A complete blood count can determine if further action is required. So if patients report muscle weakness, #ThinkMDS and #OrderaBloodCount

If you spot the symptoms #ThinkMDS #OrderaBloodCount

 

  • A Complete Blood Count (CBC) via your GP can easily determine if further investigation into MDS is needed. #OrderaBloodCount
Complete Blood Count test

#OrderaBloodCount

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. #OrderaBloodCount

 

About Myelodysplasic syndromes (MDS), a group of rare blood cancers

Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells.  Symptoms vary from person to person and depend on which blood cells are low.  About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.

  • Anaemia is due to a lack of red cells (also referred to as a low haemoglobin), which may lead to fatigue and shortness of breath even on light exertion.
  • Recurrent and persistent infections are another common symptom of MDS, due to low white cell counts.
  • When your platelet count is low, you can suffer from easy bruising and bleeding. This can sometimes manifest itself as a rash on the skin. These are tiny bleedings under the skin called petechiae and often appear where clothes are tight fitted, like around the ankles or waist. Nose or gum bleeds can also be a sign of a low platelet count.
  • Some MDS patients have no signs or symptoms, and are diagnosed by chance as a result of a routine blood test.

As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.

If you notice these signs - #ThinkMDS #OrderaBloodCount

  • September 2022: Week 1 - Bruising
  • September 2022: Week 2 - Fatigue
  • September 2022: Week 3 - Breathlessness
  • September 2022: Week 4 - Weakness
Blood Cancer Awareness Month: 2022 Bruising #ThinkMDS

Bruising

Blood Cancer Awareness Month: 2022 Fatigue #ThinkMDS

Fatigue

Blood Cancer Awareness Month: 2022 Breathlessness #ThinkMDS

Breathlessness

Blood Cancer Awareness Month: 2022 Weakness #ThinkMDS

Weakness

Register for AGM – all welcome!

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Blood Cancer Awareness Month – Breathlessness #ThinkMDS

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September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.

#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (particularly Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.

Blood Cancer Awareness Month 2022 - Breathlessness #ThinkMDS

Blood Cancer Awareness Month 2022 - #ThinkMDS

Feeling breathless after little exertion is one of the signs of MDS.

A complete blood count can determine if further action is required. So if patients report feeling breathless after a small amount of exertion, #ThinkMDS and #OrderaBloodCount

If you spot the symptoms #ThinkMDS #OrderaBloodCount

 

  • A Complete Blood Count (CBC) via your GP can easily determine if further investigation into MDS is needed. #OrderaBloodCount
Complete Blood Count test

#OrderaBloodCount

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. #OrderaBloodCount

 

About Myelodysplasic syndromes (MDS), a group of rare blood cancers

Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells.  Symptoms vary from person to person and depend on which blood cells are low.  About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.

  • Anaemia is due to a lack of red cells (also referred to as a low haemoglobin), which may lead to fatigue and shortness of breath even on light exertion.
  • Recurrent and persistent infections are another common symptom of MDS, due to low white cell counts.
  • When your platelet count is low, you can suffer from easy bruising and bleeding. This can sometimes manifest itself as a rash on the skin. These are tiny bleedings under the skin called petechiae and often appear where clothes are tight fitted, like around the ankles or waist. Nose or gum bleeds can also be a sign of a low platelet count.
  • Some MDS patients have no signs or symptoms, and are diagnosed by chance as a result of a routine blood test.

As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.

If you notice these signs - #ThinkMDS #OrderaBloodCount

  • September 2022: Week 1 - Bruising
  • September 2022: Week 2 - Fatigue
  • September 2022: Week 3 - Breathlessness
  • September 2022: Week 4 - Weakness
Blood Cancer Awareness Month: 2022 Bruising #ThinkMDS

Bruising

Blood Cancer Awareness Month: 2022 Fatigue #ThinkMDS

Fatigue

Blood Cancer Awareness Month: 2022 Breathlessness #ThinkMDS

Breathlessness

Blood Cancer Awareness Month: 2022 Weakness #ThinkMDS

Weakness

Blood Cancer Awareness Month – Bruising #ThinkMDS

Written by

 

September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.

#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (and Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.

Blood Cancer Awareness Month 2022 - Bruising #ThinkMDS

Blood Cancer Awareness Month 2022 - #ThinkMDS

Bruising easily is one of the signs of MDS

Bruising easily is one of the signs of MDS, myelodysplastic syndromes, a group of rare blood cancers. A complete blood count can determine if further action is required. So if patients report bruising easily, #ThinkMDS and #OrderaBloodCount

If you spot the symptoms #ThinkMDS #OrderaBloodCount

 

  • A Complete Blood Count (CBC) via your GP can easily determine if further investigation into MDS is needed. #OrderaBloodCount
Complete Blood Count test

#OrderaBloodCount

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. #OrderaBloodCount

 

About Myelodysplasic syndromes (MDS), a group of rare blood cancers

Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells.  Symptoms vary from person to person and depend on which blood cells are low.  About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.

  • Anaemia is due to a lack of red cells (also referred to as a low haemoglobin), which may lead to fatigue and shortness of breath even on light exertion.
  • Recurrent and persistent infections are another common symptom of MDS, due to low white cell counts.
  • When your platelet count is low, you can suffer from easy bruising and bleeding. This can sometimes manifest itself as a rash on the skin. These are tiny bleedings under the skin called petechiae and often appear where clothes are tight fitted, like around the ankles or waist. Nose or gum bleeds can also be a sign of a low platelet count.
  • Some MDS patients have no signs or symptoms, and are diagnosed by chance as a result of a routine blood test.

As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.

If you notice these signs - #ThinkMDS #OrderaBloodCount

  • September 2022: Week 1 - Bruising
  • September 2022: Week 2 - Fatigue
  • September 2022: Week 3 - Breathlessness
  • September 2022: Week 4 - Weakness
Blood Cancer Awareness Month: 2022 Bruising #ThinkMDS

Bruising

Blood Cancer Awareness Month: 2022 Fatigue #ThinkMDS

Fatigue

Blood Cancer Awareness Month: 2022 Breathlessness #ThinkMDS

Breathlessness

Blood Cancer Awareness Month: 2022 Weakness #ThinkMDS

Weakness

Blood Cancer Awareness Month – Fatigue #ThinkMDS

Written by

 

September is Blood Cancer Awareness Month and this year, the MDS Alliance is running a 4-week campaign #ThinkMDS.

#ThinkMDS aims to raise awareness of blood cancer, and specifically MDS, a rare group of blood cancers. The focus is for people (and Health Care professionals and care-givers) to spot the symptoms of MDS and to take next actions quickly. Fast action enables better treatment and faster diagnosis.

Blood Cancer Awareness Month 2022 - Fatigue #ThinkMDS

Blood Cancer Awareness Month 2022 - #ThinkMDS

Fatigue, caused by anaemia, can result in patients reporting:

 

  • Excessive tiredness
  • Lack of energy
  • Muscle weakness

A complete blood count can determine if further action is required. So if patients report feeling tired all the time and lack in energy, #ThinkMDS and #OrderaBloodCount

If you spot the symptoms #ThinkMDS #OrderaBloodCount

 

  • A Complete Blood Count (CBC) via your GP can easily determine if further investigation into MDS is needed. #OrderaBloodCount
Complete Blood Count test

#OrderaBloodCount

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. #OrderaBloodCount

 

About Myelodysplasic syndromes (MDS), a group of rare blood cancers

Myelodysplasic syndromes (MDS) are a group of rare blood cancers where patients don't have enough healthy blood cells.  Symptoms vary from person to person and depend on which blood cells are low.  About 8 in 10 patients have anaemia, whilst about 2 in 10 present to their doctor with infections or bleeding.

  • Anaemia is due to a lack of red cells (also referred to as a low haemoglobin), which may lead to fatigue and shortness of breath even on light exertion.
  • Recurrent and persistent infections are another common symptom of MDS, due to low white cell counts.
  • When your platelet count is low, you can suffer from easy bruising and bleeding. This can sometimes manifest itself as a rash on the skin. These are tiny bleedings under the skin called petechiae and often appear where clothes are tight fitted, like around the ankles or waist. Nose or gum bleeds can also be a sign of a low platelet count.
  • Some MDS patients have no signs or symptoms, and are diagnosed by chance as a result of a routine blood test.

As a support group, we have seen hundreds of cases where diagnosis of MDS was delayed. Delays means impaired quality of life for most patients, frequent infections, and for some, a worse prognosis.

If you notice these signs - #ThinkMDS #OrderaBloodCount

  • September 2022: Week 1 - Bruising
  • September 2022: Week 2 - Fatigue
  • September 2022: Week 3 - Breathlessness
  • September 2022: Week 4 - Weakness
Blood Cancer Awareness Month: 2022 Bruising #ThinkMDS

Bruising

Blood Cancer Awareness Month: 2022 Fatigue #ThinkMDS

Fatigue

Blood Cancer Awareness Month: 2022 Breathlessness #ThinkMDS

Breathlessness

Blood Cancer Awareness Month: 2022 Weakness #ThinkMDS

Weakness

Stem Cell Transplantation: A recorded Zoom session with MDS UK patients and specialists from King’s College Hospital.

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On August 25th 2022, Dr Victoria Potter, Consultant Haematologist &  Michelle Kenyon, Clinical Nurse Specialist, from King’s College Hospital, led a session on stem cell transplantation to a large group of MDS UK patients.

Below is a recording of this fantastically valuable session chaired by Chris Dugmore, Essex Group Coordinator,  Volunteer & Volunteer Coordinator with MDS UK. 

The session starts with an overview of the issues involved in stem cell transplantation followed by a Q&A between specialists and patients. The recording is approximately 1hr 50m and has invaluable information and support for those considering a transplant.

What patients said about the meeting

"I just wanted to say how good the 'Stem Cell Transplant' zoom meeting was today. Excellent facilitation by Chris Dugmore and the medical staff from Kings were really good, explaining things very easily and clearly. This was a much needed topic and personally I think it should be a topic that is covered on a regular basis as there is definitely an audience for it."

 "Re the 'Stem Cell Transplant' meeting, I just wanted to thank you for organising such a brilliant meeting and for chairing it so efficiently."

"Getting in touch with the MDS Patient Support Group is proving to be one of the most reassuring (and helpful) things we have done so far since my Dad was diagnosed."

Specialist speakers from King's College Hospital

MDS Patient Support

Dr Victoria Potter is the Consultant Haematologist and Transplant Programme Director at King’s College Hospital. She has been at King’s College Hospital since 2010 and estimates she has over-seen over 1000 stem cell transplants in that time. King’s is one of the 3 largest transplant centres in the UK.  

MDS Patient Support

Michelle Kenyon has been a Clinical Nurse Specialist at King's College Hospital for almost 25 years.  She also runs a 'Long Term Effects' clinic for people who’ve had a stem cell transplant.  Michelle is the co-author of two books on stem cell transplants. 

Stem Cell Transplantation: Patient Information books

Michelle Kenyon co-authored two patient information books on stem cell transplantation.  The first book, 'Seven Steps',  is the most widely used stem cell transplant patient information booklet in the UK.

The second book, 'The Seven Steps: The Next Steps'. was produced in direct response to feedback Michelle received from her patients at King’s, who would often tell her that they needed more information about what to expect after a transplant.

To access a .pdf of  'The Seven Steps: The Next Steps' click the link below. https://www.anthonynolan.org/sites/default/files/2021-08/1981PA_Next7Steps2021_DIGITAL.pdf

Clinical News from the American Society of Haematology (‘ASH’)

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The American Society of Haematology (ASH) have published some very interesting articles about various aspects of MDS and the potential effectiveness of a number of treatments (see the links below).

 

Cell Architecture Drives MDS and Progression

The hematopoietic cell architecture in myelodysplastic syndromes (MDS) may have the potential to predict disease progression and guide use of second-line treatment...Read more

 

ASXL1 Mutations May Predict Response After Venetoclax and HMA Therapy for MDS

The presence of ASXL1 mutations predicted a favourable response and survival after venetoclax and hypomethylating agent (HMA) therapy in patients with MDS with excess blasts (EB)...Read More

 

Magrolimab Plus Azacitidine Elicits Response in Untreated, Higher Risk MDS

Patients with higher risk myelodysplastic syndromes (MDS) were treated with magrolimab plus azacitidine in a phase Ib study. Investigators noted a lower-than-expected rate of discontinuation due to adverse events (AEs)...Read more

Advice regarding hosepipe bans and water shortages

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If you are listed as a vulnerable or disabled person, due to MDS or any other condition, and your local water authority has imposed a hosepipe ban, please contact their customer service department and ask to be added to their priority service register.  

Certain exceptions apply to the hosepipe ban in the case of older/vulnerable persons, for example, you may still be permitted to use a hosepipe to water plants if you would have difficulty managing a watering can.  One of our supporters registered yesterday, with South East Water, and received a supply of bottled water today too!

Evusheld is approved in UK for prophylaxis in immunocompromised people

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The drug Evusheld has been approved by the MHRA (Medicines and Healthcare products Regulatory Agency), but the government has not yet made a decision whether to make it available to patients.

We are continuing to monitor the access issues and joining the request of all blood cancer charities to make this drug available to immunocompromised patients, in particular blood cancer patients who have not responded sufficiently to the Covid-19 vaccines to date.

You can help by writing to your MP, asking them to add pressure to the government, to make the drug accessible. 

For tips on writing to your MP, and how to find their contact details see the

The Results website

Click this link to visit the Results website    https://www.results.org.uk/guides/how-write-your-mp

Do quote both Evusheld articles below and explain that MDS patients need this additional treatment option, to have a semblance of normal life. 

'Evusheld is Approved in UK' by Jacqui Wise - Click this link to read the BMJ (British Medical Journal) article on Evusheld  https://www.bmj.com/content/376/bmj.o722

'Clinicians call for Anti-Covid Treatment to be Available in the UK' - Click this link to read the Medscape UK article by Siobhan Harris.  https://www.medscape.co.uk/viewarticle/

The APPGs (All-Party Parliamentary Groups) on Blood Cancer and Henry Smith MP, are also seeking answers on behalf of all blood cancer patients. 

Click the link below to read about Henry Smith's role as the chair of the All-Party Parliamentary Group on Blood Cancer https://www.henrysmith.info/bloodcancer

 

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