Full Presentation Slide by Slide Guide

The Hero Project Scotland Full presentation slide by slide guide

Slides 1-22 are core slides. This means they should be delivered as part of the full presentation. Slides 24 – 35 are optional slides. These do not have to be used but are available for you to use if you want to.

This suggested script takes 20 minutes to deliver. You are welcome to rephrase, as long as the key message on each slide is conveyed.

Slide Suggested script Slide 1 – Title slide Hello, my name is ……” I’m from The Hero Project, an education programme run by blood cancer charity Anthony Nolan Every day, Anthony Nolan helps save the lives of people who are suffering from blood cancer I’m here today to explain how you too can make a difference to the lives of others Slide 2 – Could you be a lifesaver? The aim is to get the audience thinking that saving a life is something they can do…. “Take a minute to think about the people who save lives every day – paramedics, doctors, firefighters, lifeguards. Hands up if you think you could save a life like that?” “Now, hands up if you think you could save someone’s life, just by giving a little of your time?” Slide 3 – 3 ways to save a life Saving a life doesn’t have to involve bravery or a heroic act Ordinary people save lives every day, by giving some of their time and donating something of themselves Today I’m going to give you an overview of three ways you can save a life – stem cell, blood and organ donation There’s no pressure – I just want to give you facts and encourage you to think about what you’ve heard Some people might find some of the topics difficult, so if you need to leave the room please do so Slide 4 – My story This slide can move where you like in the presentation You can add a photo if you want It’s a place to say why you got involved and are passionate about raising awareness Your real life story will really engage the students Slide 5 – Organ donation (intro) WHAT IS IT AND WHY IS IT IMPORTANT “Registering as an organ donor shows that you’d like your organs to be used to help someone else, after you’ve died “Last year in Scotland, donated organs saved the lives of more than 400 people “43% of people in Scotland have signed up to the organ donor register BUT not all of them have told their family “Families are always asked for consent at the time of donation so it’s really important to tell them your wishes “Families who know their loved ones wishes are twice as likely to consent to donation “If 80% of families asked to consent said yes, 90 more lives could be saved each year “That’s important because there’s still 540 people in Scotland who need a transplant - and people die each day waiting” Additional info: “There is a particular lack of donors from ethnic minority backgrounds A donor needs to be a good tissue match for a patient to give their organs You’re more likely to be a match for someone from the same ethnic background The shortage of ethnic minority donors means it is harder for some patients to get the organ they need and they wait longer than other patients” Slide 6 – Organ donation (Caragh) WHO NEEDS ORGAN DONATION? “Organ donation is needed by people like Caragh - a university student from Scotland She’s healthy now but when she was two, she had a life-threatening liver condition Her life was saved by a liver transplant – thanks to a family who donated their loved ones organs” Slide 7 – Organ donation (who can do WHO CAN BE AN ORGAN DONOR? it) “You can join at any age – parents in Scotland can register their children if they’re under 12. “Anyone over 12 can register themselves “You can register online at www.organdonationscotland.org “When you register, you can choose what you’d like to donate. “Remember, if you join the register, share your decision with family and friends”

Additional info: If there is time in the talk, explore the different types of organs and tissue which can be donated (get the group to make suggestions) Slide 8 – Blood donation (intro) “Only 4% of 17-70 year olds (the eligible population) in Scotland gave blood in the last year “The number of new blood donors in Scotland has declined by 30% in the past five years Regular donors are really important - although almost all new donors (96%) are younger people (under 55), these new donors aren’t giving regularly So the blood service is still relying on older donors (over 55s) to donate the blood needed by patients Slide 9 – Blood donation (Henry) People like Henry rely on blood donors Henry has sickle cell anaemia, an inherited disorder of the red blood cells which is more common in black and ethnic minority communities Regular blood transfusions are what helps Henry and others like him to stay well and live longer Slide 10 – Blood donation (who can do WHO CAN GIVE BLOOD? it) “You can start giving blood from the age of 17, like Chloe. “Chloe is now a regular blood donor and says she does it because ‘it is very important for me to help other people if I would want to be helped myself. Giving blood makes me feel proud and happy because I know it could be saving somebody’s life, which is the best gift anyone can give.’ “You can register online to give blood – or take away one of our forms today “Once you’ve signed up, you’ll get a letter telling you where your nearest session is – or you can book an appointment online

WHAT HAPPENS ON THE DAY? “You arrive at your appointment and a nurse takes you through a short medical form They’ll prick your finger and test a drop of blood to make sure your iron levels are ok They may also check your height and weight, to ensure your blood volume is high enough for you to donate You’ll sit in a comfy chair and have a needle placed in one arm One unit of blood is taken – about a pint (470ml) . This part takes 5-10 minutes You get something to eat and drink and then you can go home You’ll have given an hour of your day – but your one unit of blood can save three lives” Slide 11 – Stem cell donation (intro) Ask if the audience have heard of stem cell or bone marrow donation Many people haven’t heard of stem cell transplants – but 2000 people in the UK need one each year Slide 12 – Stem cell donation (facts) Stem cells are made in bone marrow, which is inside our bones They develop into other kinds of cell – including blood cells If someone has a blood cancer, their stem cells aren’t developing properly Sometimes their only hope is to have a transplant – which means killing off their unhealthy cells and replacing them with healthy cells from a matching donor Slide 13 – Stem cell donation (Beth) Transplants are needed by people like Beth (left) Beth’s now 19 – she was diagnosed with leukaemia when she was three She had lots of treatment but, when she was 14, doctors said only a stem cell transplant would save her life There’s only a 30% chance that a brother or sister will be a matching donor – most people get their match from a stranger on the donor register Beth’s sister Jemma (right) wasn’t a match but Beth was lucky – she found a match from the register and had her transplant Beth is now studying at university (London School of Economics) She said: ‘It feels wonderful to look forward to the future. Without my donor I wouldn’t be able to get my A-Levels or go to uni. It’s thanks to them that I have all these amazing opportunities.’

Additional info (if there’s time / if relevant): You are more likely to be a match for someone with the same ethnic background There is a shortage of donors from ethnic minority backgrounds which means it’s harder for patients from these backgrounds to find a match If you’re white, northern European, you have a 96% chance of finding a match – this drops to 60% if you’re from a BAME background Slide 14 – Stem cell donation (who WHO CAN REGISTER AS A POTENTIAL DONOR? can sign up) You can join the Anthony Nolan stem cell donor register if you are aged 16-30 and weigh more than 7st 12lbs (50kg) You’ll stay on until you are 60 and there’s a 1 in 790 chance that you’ll be asked to donate in the next five years. Think about it before you register. If you’re a match for someone, you might be their only match - so you need to feel confident that you’d go through with the donation if you got the call

HOW DO YOU REGISTER AS A DONOR? To sign up, you need to fill in application form. You can do that on the Anthony Nolan website (or at an event if we’re coming back to run one) You’ll be asked to give a DNA sample from your mouth, using a simple test kit. If you’re at an event, we’ll show you how. If you’ve ordered your kit online, there’ll be instructions on how to use it and send it back to Anthony Nolan Your sample will be tested to get your tissue type, which is put on the register with your details You’ll get a donor card in the post to confirm you’re on the register Slide 15 – Stem cell donation (what if If you are a match for a patient, there are two ways I’m a match - bloodstream) you can give your stem cells 90% of the time, they are taken from the bloodstream Slide 16 – Stem cell donation, through Stephen (pictured) is donating through the the bloodstream (Stephen) bloodstream A nurse visited him at college once a day for four days and gave him a small injection That stimulated his body to produce more stem cells and send them into the bloodstream – some people feel achey and tired during this part On day 5, Stephen went to the donation centre (London / Sheffield) He had a needle in one arm, which took blood to a machine that filtered off the stem cells The rest of the blood went back into his other arm The whole process takes 4-5 hours – you can watch DVDs, go online or take a friend / relative with you. Donors say it’s not painful but a bit tiring. Stephen was happy to give up some time to help a patient: ‘We’d all like to think that a stranger would step up in our time of need, but sometimes we’re that stranger.’

*PBSC = peripheral blood stem cell Slide 17 - Stem cell donation (what if Stem cells can also be collected directly from the bone I’m a match – bone marrow donation) marrow, where they’re made This method isn’t done very often now but sometimes it is better for the patient – or donor Slide 18 – Stem cell donation (Ethan) Ethan donated this way. He stayed in hospital the night before his donation and the next day, he had a general anaesthetic He was asleep and didn’t feel anything while doctors used a needle and syringe to take the stem cells from the back of his hip (indicate to the audience) Ethan had to stay in hospital for a day, while he came around from the anaesthetic. This picture was taken the morning after he donated. Like most donors, Ethan had a slightly sore lower back for a few days and felt tired. These symptoms pass in a few days Whichever method you donate by, you’ll be advised to rest for a few days While you do that, your stem cells will be taken to the patient, wherever they are in the world Ethan said he found donation very easy: ‘It’s such a simple procedure. It’s crazy that I was born with the power to save someone’s life.’ Slide 19 – Should you sign up? It’s completely up to you whether you register to be a donor – whether that’s for blood, organ or stem cells We’ve given you an overview today but you can find out more on the Anthony Nolan website, or the blood and organ donation webpages You can also ask me questions today Please talk you your family and friends about what you’ve heard today - even if you don’t want to register, you might inspire someone else to do so Slide 20 – What next (blood and organ If you want to help, you can: donation) Register as a blood donor or join the organ donor register online Slide 21 – Find out about stem cell Interested in knowing more about stem cell donation, donation and how to save lives with or how you can help Anthony Nolan to save lives? Anthony Nolan (webform) We have some giveaway cards here today (let students know where in the room they are – seats, at the front etc) You’ll see a link on this card to a website where you can go and fill in your details Then we can email you and tell you more about how you can get involved with our lifesaving work That could be joining the donor register, helping us raise funds, or just spreading the message There’s no pressure and we won’t pass your details on to anyone else

Additional info: If there’s a recruitment event coming up, mention this now. You can also add the recruitment event slide Slide 22 – Thank you It’s been a pleasure to speak to you today. Thank you for listening Invite questions OPTIONAL SLIDES Slide 24 – Adrian Sudbury Adrian Sudbury was a 27 year old journalist who died of leukaemia. When he was terminally ill, he led a successful campaign to educate 16 - 18 year olds about stem cell, blood and organ donation. He believed that if young people are given the facts about what it means to be a donor, many more would join the various registers. He wanted to 'bust the myths' surrounding donation The Register and Be a Lifesaver education programme is Adrian's legacy and the reason that you are seeing this presentation today Slide 25 – Recruitment event Editable date time and venue Slide 26 – Lara’s story video This video tells the story of Lara Casalotti, who got her transplant after a world wide search Lara talks about the difference her donor has made

Stuart’s story Stuart Brooks – 27, mixed race donor Stuart is mixed race (his mum is from the Dominican Republic) and he signed up after his aunty told him the register had a lack of mixed race donors. As a gay man, Stuart thought he wouldn’t be able to register – but was pleased to find that wasn’t true. In 2014, he was found to be a match for a patient and donated his stem cells. He said: ‘I would do it all again. It was probably the most important thing I will ever do in my life. If you are mixed race you are unlikely to find someone in your family who could do it for you and that’s why it’s so important to sign up.’ Slide 28 – Vandan’s story Vandan Popat - 22, Hindu donor Vandan joined the register at university. He knew there was a shortage of donors from BAME backgrounds. He donated the day after his 21st birthday and spent his donation time watching YouTube videos. He said: ‘I was so comfortable that I even fell asleep for an hour. I was really excited that I was given an opportunity to save a life. ‘I pray for the recipient every day. If I could meet them I would give them a massive high-five and wish them all the very best for the future.’ Slide 29 – Ross’s story Ross Torode, 22 - Leukaemia diagnosis in GCSE year. Ross was diagnosed with blood cancer when he was 16. His only hope was a stem cell transplant. His sister wasn’t a match but he found a donor through the Anthony Nolan register. He said: ‘These selfless people just sign up and volunteer to save strangers’ lives – it’s epic. I wouldn’t be here if it wasn’t for my donor. To be able to give something is a privilege. You are giving hope to someone in a dark situation. It’s not a chore, it’s an honour.’ Slide 30 – Catherine’s story Catherine Amies – organ donor This is Catherine Amies, from Worcestershire Catherine needed a kidney transplant, but struggled to find a matching donor due to her mixed heritage She waited for three years for a match but sadly died in 2010, before a donor could be found Catherine had registered as an organ donor herself before becoming ill When she died, her parents gave permission for some of her healthy organs to be donated The generosity of Catherine and her family has given others a chance of life Slide 31 – Sarah’s story Sarah- organ donor Sarah, from Sunderland, was studying Fine Art at college She signed up to the organ donor register when she was 15, along with her sister Melisa and told her parents right away Sadly, she died two years later, after being struck by a car Her kidney, liver, heart, colon and pancreas were donated to help others Sarah's mum Theresa, who’s a nurse, said: ‘The thing that gives me comfort is to think that the decision to donate her organs has benefitted people in need. I think that just sums Sarah up really.’ Slide 32 – Ally’s story Ally Kim – patient appeal Alastair Kim (nicknamed Ally), aged two, is from Oxford. He has a condition that prevents the immune system from functioning properly (Chronic Granulomatous Disorder).

Ally’s best hope of a cure is a stem cell transplant - but he needs a donor of East Asian descent. Ally has a big brother Micah but he isn’t a suitable donor match.

Ally’s parents Andrew and Judy are urging people from East Asian backgrounds to join the Anthony Nolan register and see if they can be Alastair’s one-in-a- million match. Slide 33 – Patient receiving stem cells George Norton – stem cell recipient (George) George received a stem cell transplant in 2014. The stem cells were given by his donor and brought by courier to hospital, where his nurse gave them to George through a simple blood transfusion. Before this stage, George had been through treatment to kill off his own unhealthy stem cells. He calls the day of his transplant his new birthday – that’s why he’s wearing the party hat! Slide 34 – donor / patient meeting George and Tim – donor / patient meeting (George and Tim) Tim donated his stem cells to give George a chance of life. Two years on (in 2016) they met for the first time. George said: “I’m not just grateful to Tim for saving my life. I’m grateful for every extra day his cells have given me. And I’m grateful for everything this extra chance has taught me.” Slide 35 – Why ethnicity matters Your ethnic background influences your genetic make up - that means you’re more likely to be a matching donor for someone who shares your ethnic heritage But there’s a shortage of donors from black, Asian and minority ethnic (BAME) backgrounds – this makes it much harder for patients from these backgrounds who need a stem cell transplant, blood transfusion or organ donation. Currently, 60% of white stem cell transplant recipients get the best possible match – but this drops to just 20.5% if the patient is from a BAME background. 1.6 million people donated blood in the UK last year – but only 3% of them were from black, Asian or minority ethnic communities. Black donors are needed because certain blood diseases, like sickle cell disease, are more common in black populations. These people are more likely to have the blood group RO which is needed to treat patients with sickle cell disease. Statistically, people in BAME communities are also more likely to need an organ transplant than the rest of the population as they are more susceptible to illnesses such as diabetes, which may result in organ failure and the need for a transplant. But they wait twice as long for a transplant as a white patient (two years rather than one year) – because of a shortage of BAME donors.