Organ donation law changed – Two Years Anniversary

Today marks the second anniversary of the #OrganDonation opt out system coming into effect in England, known as ‘Max and Keira’s Law’. You still have a choice if you want to be an organ donor or not when you die and families will always be involved. www.organdonation.nhs.uk

Families are more likely to support organ donation going ahead if they know what their loved one would have wanted. Have you had the conversation? www.organdonation.nhs.uk

NKF and NBTA webinar – Friday 20th May at 3.30pm

The webinar organised by the National Kidney Federation (NKF) and the National Black, Asian, Mixed Race, and Minority Ethnic (BAME) Transplant Alliance (NBTA). This will take place on 20th May at 3.30pm, to mark the second anniversary of the organ donation law change. More details can be found on the poster here.

NHS Blood and Transplant – ‘Give Hope this Easter’ Campaign

We are excited to bring you our Easter campaign, which will run from 14th April to 19th April 2022. For many people, Easter is a time of hope and a celebration of the gift of life. So, it’s a perfect time to consider blood or organ donation.

The campaign aims to raise awareness about how we can help our friends, family and community, through the gift of organ donation or blood donation at this special time of year. Through press and social media activity, we will be encouraging people to register as a blood donor and book an appointment to donate blood, as well as talk about organ donation with your loved ones and register your decision on the NHS Organ Donor Register.

We especially want to get more people of Black heritage talking about blood and organ donation. Can you help us?

The need for more blood donors of Black heritage:

• Sickle cell mainly affects people of Black heritage, and many people living with Sickle cell require regular blood transfusions.

• Black blood donors are ten times more likely to have the rare blood sub type (type Ro) needed to provide the best match

• That’s why we need more people of Black heritage registering as blood donors and booking an appointment to donate blood.

The need for more organ donors of Black heritage:

• We need more people from Black communities to tell their families they want to donate. Organ donation saves lives.

• Black ethnicity patients are over-represented on the transplant waiting list and more likely to need an organ transplant, due to susceptibility to illnesses such as diabetes and hypertension, which can result in organ failure.

• Certain organs, such as kidneys (which three quarters of people on the transplant waiting list are waiting for) are matched by blood group and tissue type. People from the same ethnic background are more likely to be a match

Easter campaign activity

We are excited to bring you some new content, we would love for you to share with your networks! Look out for these on NHSBT social media channels or you can download the videos here

• Video featuring BBC presenter Cole Morton sharing his message on organ donation

• Videos featuring Muyiwa Olarewaju, Premier gospel presenter and a singer song writer, sharing an important message on blood donation and organ donation

• Video featuring Tim Campbell, from the Apprentice, with a special message on blood and organ donation – we will share this video with you later this week

• New social media assets are available to download and share on your social media channels (the social assets are sized to fit most social platforms)

• A press release will go live on 14th April

Here are ways you can help us spread the word across your audiences:

1. Follow our social media channels @NHSOrganDonor @GiveBloodNHS, join the conversation, and share our campaign content

2. Share our Easter campaign social media assets, which are available to download here

Please use our recommended hashtags #GiveHope #Easter

3. Our press release goes live on our website on Thursday 14th April – please share with your networks 4. Encourage people to visit our websites to find out more

Blood donation – https://www.blood.co.uk/

Organ donation - https://www.organdonation.nhs.uk/

Suggested social media captions

#GiveHope this #Easter – join @NHSOrganDonor and help save lives

#GiveHope this #Easter – talk to your loved ones about organ donation and register your decision @NHSOrganDonor #GiveHope this #Easter – join @GiveBloodNHS and help save lives

#GiveHope this #Easter – sign up as a blood donor and book an appointment to donate @GiveBloodNHS

Aretha and Shanann’s story

There are always inspiring stories to share – people whose lives have been impacted by organ or blood donation. Here you can find and watch a touching story of Aretha and her daughter Shanann, who is a kidney and pancreas recipient. https://bit.ly/3Kzuh3H

Aretha comes from a family where organ donation was never openly discussed and she was against organ donation, but after seeing how a transplant has improved her daughter’s life, Aretha is now a passionate advocate for organ donation and encourages more people of Black heritage to register as organ donors.

NHS Blood and Transplant

Do something amazing today

- Give Blood. Organ donation. The gift of life. You can visit us at www.nhsbt.nhs.uk

'Organ Donation Week' coming up in September

A couple of years ago Free Churches Group, working with the Blood Transfusion and Organ donation services, facilitated a one day conference with our member churches and groups. This was a useful event to help us to raise the profile and importance of these services, particularly for our churches who have members from Black, Asian and other ethnic communities. We would like to continue to encourage more blood and organ donors from Black, Asian and minority ethnic communities to come forward to meet the needs of patients from across our communities. Certain conditions, such as sickle cell and thalassaemia, are more prevalent within these communities.

We would like to share with you news of Organ Donation Week which is coming up in September.

This is an awareness raising week from 20th - 26th September with a theme this year of: ‘Leave Them Certain’. This campaign aims to encourage people to talk to their loved ones about organ donation through highlighting that families are always involved before organ donation goes ahead.

Watch this space for further information about this year’s campaign and how you, your churches and your families can get involved in the discussions about this vital issue.

ORGAN DONATION WEEK

(cover photo courtesy of Alexandru Acea at Unsplash)

A Call to Action

The Free Churches Group working with the Blood Transfusion and Organ donation services facilitated a one day conference with BME Churches.

The aim of the day was to encourage more blood donors from Black, Asian and minority ethnic communities to come forward to meet the needs of patients like Shaylah (See her story below) .

Certain conditions, such as sickle cell and thalassaemia, are more prevalent within these communities. And, some rare types are also only found within these communities. Patients who require regular blood transfusions benefit from receiving blood from donors with a similar ethnic background.

Shaylah

Shaylah has a rare condition and needs regular blood transfusions, even over Christmas, to keep her alive.

The seven year old needs blood transfusions every 3 weeks to treat the painful inherited blood disorder, sickle cell disease.

She had a stem cell transplant from her mum in April but complications mean she is unwell again and currently having regular transfusions.

Shaylah says: “It makes me feel better because sometimes I get really tired and once I get my super girl blood I feel strong like supergirl!

“Blood donors are my heroes. I would say a big big thank youuuuuu!! Thank you for being so kind and not being scared of needles like me and I would give them a cuddle for being so kind and chocolate because I love chocolate.”

Sickle cell disease is the name for a group of inherited conditions that affect the red blood cells. The most serious type is called sickle cell anaemia.

Sickle cell disease mainly affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin. In the UK, it's particularly common in people with an African or Caribbean family background.

People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they don't live as long as healthy blood cells and they can become stuck in blood vessels.

Sickle cell disease is a serious and lifelong condition, although long-term treatment can help manage many of the problems associated with it.

Black, Asian and minority ethnic donors are specifically needed right now because:

some patients who receive frequent blood transfusions need blood to be closely matched to their own

a number of blood conditions, like sickle cell disease which is treated through blood transfusions, most commonly affect black, Asian and minority ethnic people

the best match typically comes from blood donors from the same ethnic background.

Giving blood

While people from all communities and backgrounds do give blood, fewer than 5% of our blood donors who gave blood in the last year were from black, Asian and minority ethnic communities.

This is despite black, Asian and minority ethnic communities representing around 14% of the population. We want to try and readdress this balance.

If you have the sickle cell trait you can still become a blood donor.

For further information please visit here.

Participants also heard about the changes to the Organ Donation system – from ‘opt in’ to ‘opt out’.

From spring 2020, all adults in England will be considered potential organ donors, unless they choose to opt out or are in one of the excluded groups. This is commonly referred to as an ‘opt out’ system. You may also hear it referred to as 'Max and Keira's Law'.

What do you have to do?

If you want to be an organ donor, the best way to record your choice is to join the NHS Organ Donor Register.

If you do not want to be an organ donor, you should register a ‘refuse to donate’ decision on the NHS Organ Donor Register. This is also known as opting out.

If you are already registered on the NHS Organ Donor Register, and your decision remains the same, you should tell your family what you want.

If you want to change your decision, which is already registered on the NHS Organ Donor Register, you should amend your registration.

Whatever you decide, make sure you tell your family, so they can honour your choice.

For further information please visit here.