THE ANTHONY NOLAN NEWSLETTER FOR STAFF AND … · newsletter for staff and volunteers lifesaving science: immunotherapy saying thank you to staff & supporters anthony nolan got festive

JANUARY 2018 1

THE ANTHONY NOLAN NEWSLETTER FOR STAFF AND VOLUNTEERS

LIFESAVING SCIENCE:IMMUNOTHERAPY

SAYING THANK YOUTO STAFF & SUPPORTERS

ANTHONY NOLANGOT FESTIVE

AVA'S STAR APPEARANCEAT THE ANSAS

ISSUE 28 | JANUARY 2018

02 INSIGHT 28 JANUARY 2018 03

SFRS recruitment event with the 10,000th potential lifesaver.

16-year-old Shelley McKay from Clydebank High School (pictured below) was proud to be the 10,000th recruit. The milestone came just days after the SFRS were commended in the Recruiter of the Year category at the Anthony Nolan Supporter Awards.

Ally Boyle, who founded SFRS's partnership with Anthony Nolan, said:

'When I was diagnosed with a blood cancer I was absolutely devastated. But I did not want that to be 'it' and I was therefore determined to find a way to create something positive out of such a scary and terrifying diagnosis.

'I am extremely proud and more than a bit emotional at the thought of what the partnership has achieved.

'The Fire Service is all about teamwork and helping others and to see us hit 10,000 people added to the register is a real reflection of just that.

'It is something that our volunteers have achieved as a team and to my mind the combination of them, and all the amazing people who have joined the register, makes it the best team ever.

'I am extremely grateful to them, and of course to our partners, Anthony Nolan. If it wasn't for people like them then there would be little hope for blood cancer patients like me. They are all absolute heroes!'

Area Manager Andy Watt, who leads the partnership on behalf of the SFRS, said:

'I really am delighted to see us reach such a significant milestone - 10,000 potential lifesavers recruited is amazing.

'The best part is that, thanks to the way colleagues have stepped forward to volunteer to help us, the partnership continues to go from strength to strength and the numbers will continue to grow.

'I want to take this opportunity to thank everyone involved for giving up so much of their time to help others, the contribution they have made is outstanding and a fantastic demonstration of the values of the Scottish Fire and Rescue Service.'

Amy Bartlett, Regional Register Development Manager for Anthony Nolan, said:

'To have recruited 10,000 donors – the lifesavers of the past, present and future – is a wonderful achievement and is testament to the dedication of everybody at Scottish Fire and Rescue Service.

'The team's volunteers, recruiters and fundraisers have been an inspiration to us all at Anthony Nolan and their legacy will live on for years to come: giving patients across Scotland, the UK and the world, a second chance of life.

'We have been blown away by the passion shown by SFRS during our partnership and have been privileged to work with a great team over the last eight years.'

A FOND FAREWELL

At the end of December, Simon Dyson retired from his role as Chairman of Anthony Nolan, after over 30 years in the position.

Simon first became involved in the charity in 1986, through his work with the Roundtable to recruit 100,000 donors in just six weeks, more than doubling the size of the register at the time. In 1999 Simon made a promise to Shirley Nolan, who was suffering from ill health at the time, to look after the charity she had founded in her late son's name, and he has worked tirelessly to keep Shirley's vision alive ever since.

On 5 December, we held a special reception to thank Simon Dyson for over three decades of leading and supporting our lifesaving cause, with almost everyone who has worked with and supported Simon over the years in attendance. Simon was presented with a special commemorative book full of tributes from staff and supporters , and he was made Life President of Anthony Nolan.

Addressing Simon on the night, Henny Braund, Chief Executive of Anthony Nolan, said: 'For over thirty years, from your initial commitment and your later promise, you have kept Shirley's vision alive and inspired so many of us to be part of it too. As we stand today, Anthony Nolan has recruited more than 675,000 people to our register. You have championed scientific innovation, enabling us to recruit more of the right donors, establish our cord blood bank and launch our clinical trials network. You have been a great advocate for patients, inspiring us to develop a vision to 'save and improve the lives of our patients'. The spirit of your stewardship has been one of passion and generosity. Your commitment has enabled us to exceed all expectations. So I'd like to thank you, on behalf of Anthony Nolan, its staff, volunteers and supporters for all that you have done.'

Former Vice Chair Ian Kreiger has now taken over as Chair. A successful businessman, Ian's areas of expertise include corporate governance and risk management. He has years of experience advising commercial businesses as well as bringing financial acumen to our lifesaving cause as Chairman of our Audit and Finance Committee.

WELCOME TO INSIGHTWELCOME TO INSIGHT 28The last few months of 2017 saw some big milestones for Anthony Nolan. Some were endings – as our Chairman Simon Dyson retired from his role. Some were exciting new beginnings – such as the launch of our IMPACT clinical trials network. Many were part of initiatives that look set to go from strength to strength – including our cord blood collection centre in King's College Hospital and our partnership with Scottish Fire and Rescue.

In this edition of Insight, we find out about all this and more, with stories of staff across the organisation living our values, how Anthony Nolan is leading the way in improving treatments for patients, and what our marvellous Marrow volunteers have been up to. Plus, we share how we helped spread a little Christmas cheer in December.

Ian Pithouse, Editor, Insight

INSIGHT 28 WAS BROUGHT TO YOU BY Amy BartlettAnya Muir WoodCharlotte HughesHelen BillamIan PithouseJamie CrossTegan Brown

If you would like to contribute to future issues of Insight, get in touch with: [email protected] image: Ava at 2017's ANSA awards.

Our lifesaving partnership with the Scottish Fire and Rescue Service (SFRS) has achieved the remarkable milestone of 10,000 potential donors recruited to the Anthony Nolan register.

Simon Dyson (right) receives his Lifetime President certificate from Prof. Charles Craddock.

10,000LIFESAVERS


LETTERS TO LIFESAVERSThe festive season is a particularly busy time of year for Adeline O'Keefe and her colleagues in our Donor Follow-up Team, as they help donors and recipients to exchange anonymous Christmas cards. Adeline estimates that we received 600 cards over the Christmas season, each with heartfelt messages of thanks and love. The team read each one to check they don't contain any information that might identify the patient or donor, as in the UK any correspondence must be anonymous for the first two years after transplant.

As well as having the chance to read and pass on all these Christmas wishes, Adeline says speaking to donors and recipients is one of her favourite parts of the job. 'When you can speak to a

recipient who wants to contact their donor, you can hear in their voice how much it means to them,' she says. 'To the recipient, an anonymous person has genuinely saved their life and for them to be able to say "thank you" means the world to them.'

'Hearing from parents whose children have received a stem cell transplant is always really special. It makes me smile when I know that I have been able to bring them together.'

'It's always interesting to see the unique and creative ways both parties communicate anonymously. Some children send pictures of their favourite toys, musical instruments or talk about their favourite movie characters, while others will send drawings as a way of saying thank you.'

CHRISTMAS CAROLSAnthony Nolan supporters, volunteers and staff once again filled St Pancras Church in London for our annual Christmas Carols concert on Wednesday 6 December. Over 300 people attended, raising over £10,000. Stem cell transplant recipient Martin Burke (pictured) shared his moving story, there were songs from the London City singers, and readings from celebrities Jim Carter and Joe Crowley, as well as Chair of Trustees Simon Dyson

ANTHONY NOLAN GOT FESTIVE

King's College Hospital is one of four hospitals in the UK where Anthony Nolan has cord collection facilities - it was selected for the size and ethnic diversity of the population it serves. The programme opened in September 2007, and amazingly the first cord collection took place on Christmas Eve.

'Because it was the very first donation we'd collected at King's College Hospital, the supervisor Rob thought it was important enough to come in on Christmas Day – usually one of only two days a year the service is closed – and process it. Since collecting that first cord, the Anthony Nolan team at King's College Hospital have collected over 8,500 cords from selfless mums, of which over 2,200 are of good enough quality for transplant. Cord blood transplants are a real lifeline for people with blood cancer, and by doing something as simple as donating your placenta and umbilical cord – which would usually be thrown away – mums and their babies could save a life.'Rashelle Dinham, our Site Coordinator.

Cord blood donations which don't contain enough stem cells to be used in transplant may be used in lifesaving research at the Anthony Nolan Research Institute, helping develop new techniques to make transplants more successful. You can find out more about some of the treatments we are developing using cord blood on p8-9.

Cord blood transplants can be incredibly important for patients who don't have a matching adult donor on the Anthony Nolan register, particularly those with unusual or rare tissue types and people from ethnic minority backgrounds. Because the stem cells in cord blood are less mature than those in adults, they can adapt to a greater range of people and are less likely to be rejected. And because they are banked, cord cells are immediately available, so are vital for people in urgent need of a transplant.

Sarah Dyce found out about the lifesaving potential of cord blood when her friend's father was diagnosed with leukaemia out of the blue and needed a stem cell donor. 'A match was found from umbilical cord blood,' says Sarah. 'He's recovering now and doing well, and it really reinforced how important it was that we donated my cord blood.'

Sarah has registered to donate cord blood three times at King's when having each of her children – Lucas, four, Hayden, three, and Clara, one. 'At the time I barely noticed it happening,' she says. 'It didn't change anything about the way I gave birth and yet it could save someone's life.'

Anthony Nolan was full of the Christmas spirit this year, sharing festive stories about everything from cord collections to cards between patients and donors, as well as hosting our annual carol concert.

Adeline O'Keefe (right) and Lesley Sinnott sort through this year's correspondence. Martin Burke speaks about how 'my transplant saved my life'.

CHRISTMAS CORDS

Anthony Nolan's cord collection centre celebrated its 10th anniversary in December, and remembered a story of festive lifesaving.

Sarah Dyce and her baby, Clara, after her cord blood donation.


Svetlana Mintschenko Simon Dyson Volunteer of the Year

Svetlana has been volunteering with Anthony Nolan as a courier for the last three years, completing over 50 trips around the world to collect stem cells from donation centres and deliver them to patients in need.

When Svetlana's late husband was in hospital with myeloma he would receive blood donations, and Svetlana says she and her husband 'would often comment that behind each blood transfusion lies a complex process, beginning with a generous donor, performing an altruistic act. I knew that I would one day find a way of giving something back.'

Svetlana attended the ceremony to collect her award, and said:

'It was an unforgettable and moving experience. Looking around the room, I realised that everyone there was in some way a hero.

'Through Anthony Nolan, we were all united in our mission of saving the lives of people with blood cancer. I was able to meet recipients and donors and fundraisers and our ambassadors. There were so many moving stories being shared. It was a real honour to have been there.'

Poonam Shah Individual Fundraiser of the Year

Poonam has been fundraising for the charity for more than two years after her husband, Rakesh, died from myelodysplasia (MDS) in December 2014, despite receiving a stem cell transplant two months earlier.

'Raks was honestly the most truly amazing, smiliest, sociable person that you'd ever meet in your whole life. Every room would light up when he entered. He was always the life and soul of the party and for him, family and friends always came first.'

After Rakesh died, Poonam decided to raise funds for Anthony Nolan, and awareness among people from south Asian and other ethnic minority backgrounds about stem cell donation.

Poonam set herself the task of raising £40,000 for the charity by November 2017, to mark what would have been Rakesh's 40th birthday – enlisting the help of friends and family to undertake 40 fundraising challenges in his memory and breaking her fundraising target.

David Gould Donor Champion of the Year

David joined the Anthony Nolan register in his first few weeks at Leeds University, after a friend was diagnosed with Anaplastic Non-Hodgkins lymphoma and needed a lifesaving stem cell transplant.

In April 2017, David received an urgent text from Anthony Nolan – he had been matched with a patient.

Not content with sharing just his stem cells, David wasted no time contacting Anthony Nolan to ask for advice on sharing his story. He was particularly keen to support the charity's need to recruit more young men and minority ethnic donors. His blog was shared by his employer, Transport for London (TfL), inspiring countless people to consider becoming stem cell donors.

'It was an incredible event and to meet people who have received transplants makes it more real. When you sign up you don't think anything of it and when you receive a call I thought: "it's someone's family, how could I possibly say no?"'

David has since taken the opportunity of winning the award to once again share his story and call for even more people to join the register.

STORIES OF SUPPORT The fifth annual Anthony Nolan Supporter Awards took place on 28 November at the Houses of Parliament. Sponsored by Colleen Fletcher MP and hosted by Joe Crowley, it was an opportunity to say a huge thank you to the incredible supporters that make our lifesaving work possible.

Supporters from across the country were recognised in 15 categories, including Ava Stark (pictured right) who was named John Petchey Young Hero of the Year, after her story captured the nation with the help of Journalist of the Year Sarah Vesty’s articles in the Daily Record. Here are some of the other stories behind the Awards.

Ava StarkJohn Petchey Young

Hero of the Year

William AshShirley Nolan Award

for Special Recognition

Poonam ShahIndividual Fundraiser

of the Year

Sarah VestyJournalist of the Year

Mark Tami MPPolitical Supporter

of the Year

THEWINNERS

Covent Garden Tenants Association

Organisational Fundraiser of the Year

KCL MarrowBAME Advocate

of the Year

Sister Joy BrennanScientific Supporter

of the Year

Loughborough MarrowRecruiter

of the Year

Tommy FleetwoodCelebrity Supporter

of the Year

Steve Hartley

Patient Champion of the Year

Professor Ajay VoraClinical Supporter

of the Year

David GouldDonor Champion

of the Year

Team AliceGroup Fundraiser

of the Year

Svetlana MintschenkoSimon Dyson Award for

Volunteer of the Year

David Gould Donor Champion of the Year

David joined the Anthony Nolan register in his first few weeks at Leeds University, after a friend was diagnosed with Anaplastic Non-Hodgkins lymphoma and needed a lifesaving stem cell transplant.

In April 2017, David received an urgent text from Anthony Nolan – he had been matched with a patient.

Not content with sharing just his stem cells, David wasted no time contacting Anthony Nolan to ask for advice on sharing his story. He was particularly keen to support the charity's need to recruit more young men and minority ethnic donors. His blog was shared by his employer, Transport for London (TfL), inspiring countless people to consider becoming stem cell donors.

After attending the ANSAs, David said: 'It was an incredible event and to meet people who have received transplants makes it more real. When you sign up you don't think anything of it and when you receive a call I thought: "it's someone's family, how could I possibly say no?"'

David has since taken the opportunity of winning the award to once again share his story and call for even more people to join the register.


Q&A WITH DIANA HERNANDEZ


So what brought you to Anthony Nolan?

Like most scientists, I started in academia. Academic posts tend to be very rigid – you do your PhD, you become a post-doc, after that either you become a lecturer or you leave. I left and did a few years in industry, which is completely different – prior to my appointment here, I was Principal Scientist at Plasticell Ltd, a biotechnology company specialising in stem cell technologies and cell therapy products. I am really passionate about cell therapy, but when you're in a company you kind of have to only push the specific thing that that company does. I was looking for an opportunity to work on a more global scale and move the whole field forward.

Anthony Nolan is the perfect place to do that. After all, transplantation is effectively the first cell therapy – a lot of people don't think about it as being a cell therapy but that's exactly what it is. So who better to move the rest of the field forward than the pioneers; the experts in transplantation.

I saw the post advertised and I thought: that's a perfect position for me in a place that will be doing exactly the kinds of things that I'm interested in. Then I came here and spoke to Alejandro [Madrigal, our Scientific Director] and I was sold. Anthony Nolan has grown with how the science has grown, and the clinical aspects of transplantation have moved on. We have the clout to take things into the next phase. People respect what comes out of here – they're willing to listen, because we're doing it for the common good, progressing medicine and the care of patients.

What is immunotherapy, and how are we involved in it?

Immunotherapy harnesses the power of the body's immune system to combat disease. Our immune systems have evolved to protect our bodies from attack from outside pathogens and from internal risks such as the uncontrolled growth of cancerous cells. To do this effectively, the immune system has many different types of cells and molecules that allow it to recognise "foreign invaders" and neutralise them. But cancer is able to evolve and find ways to survive by stopping your immune cells working properly.

After a transplant, there is a risk that the donor's immune cells could recognise the patient's cells as foreign and attack them, resulting in Graft versus Host Disease (GvHD). By having a better understanding of the cell types involved in immune responses, we can control them better, and harness their power to improve patient outcomes.

The Immunotherapy Group aims to use immunotherapy to improve outcomes for people who have stem cell transplants, by improving engraftment, preventing relapse, and treating GvHD.

Most of our projects use the unique properties of cord blood – both as a source of stem cells for transplant, and using other types of cells for cell therapy. For example, we are hoping to be able to increase the number of cord blood transplants that can take place, by expanding the number of stem cells in the lab prior to transplantation, so smaller units that may be a better match can be used for transplant.

We are also examining the donor factors that affect the success of cord blood transplants, for example if the mother has had any previous pregnancies. New findings from this project could potentially change the way cord blood units are selected for transplantation. We are also looking at harnessing the power of 'Natural Killer' cells in cord blood to kill tumour cells, by expanding and activating these in the lab to make them even more powerful at combating cancer relapse.

We have ideas on how we could do more to help drive the field forward beyond our own research. Our IMPACT clinical trials network is an exciting opportunity to speed up clinical trials, but there are a whole series of stages before you can go into a clinical trial, and not many people know how to make that jump.

A lot of cell therapy companies have been born out of small labs or academic groups, so they don't have the clinical knowledge of what happens to a patient before they get a transplant, for example. Then there's all the ethical and regulatory part – before you can ask for approval for a clinical trial you need to know exactly what you're going to do and how you're going to do it.

So providing the infrastructure for that would probably be very helpful to the whole of the industry in the UK. It's just an idea at this stage, but we're asking: can we bridge some of those gaps? Would that be of use to others and also benefit patients in the long-run?

What are the current trends in medical research, and how does Anthony Nolan fit in?

Cell therapy is getting a lot of attention at the moment, with new therapies being approved all the time and getting some fantastic results. And there's also regenerative medicine, which includes cell therapies but also includes drugs. I don't think we will ever completely move away from using chemicals, but there are fewer new drugs coming out and we seem to be shifting towards more cell therapies and using cell models to better test and understand the drugs we have.

Personalised medicine is the other big thing that's happening at the moment – it's a bit of a buzzword but people are really starting to understand its importance. I used to study the liver, and liver enzymes metabolise every drug you take, so variations in enzymes determine how you react to different drugs. People were very interested in this at the time, but then it all died down as there were exciting breakthroughs in other areas of research.

But from there stemmed this idea that one size doesn't fit all. You need to adapt medicines to different people, and in order to do that you need to really understand individual disease. Genetics has really helped with that – the fact that you can effectively sequence whole genomes relatively cheaply. You can really look at that, and say "this person's genetic makeup means they will react really badly to this type of drug but perhaps not this other one." So we need to understand what the difference is – can we use cell models to identify which drugs or cell therapies will work? We want to identify much earlier on which treatments are better, not just for different types of cancer, but for different types of humans.

A stem cell transplant is the original cell therapy, and our colleagues in the Immunogenetics Group are getting more and more evidence of the importance of a personalised match for patient outcomes. I think in the next few years we are likely to see more personalised cell therapies that will work alongside, and in some cases replace, transplants, and Anthony Nolan will continue to be at the forefront.

Diana Hernandez is the new Head of the Anthony Nolan Research Institute's Immunotherapy Group, which aims to harness the power of the body's immune system to improve transplant outcomes and combat disease. Diana brings her extensive experience in the field, particularly in using immune cells as a treatment (cell therapy), to our lifesaving cause. Insight asked Diana what brought her to Anthony Nolan, and where we might go next.

'I think in the next few years we are likely to see more personalised cell therapies that will work alongside, and in some cases replace, transplants, and Anthony Nolan will continue to be at the forefront.'


Hannah KinghornVolunteer Engagement Manager

Hannah has joined the team in Anthony Nolan's London office as Marrow Volunteer Engagement Manager.

'I am incredibly excited to join the team at Anthony Nolan as a new Marrower! My role is to make sure that Marrow volunteers are getting the best experience. I'll be working on developing their communications, reward and recognition, student volunteering week and new volunteer opportunities for Marrowers. I'll also be building on the existing Alumni programme to help provide new opportunities after they graduate. And I'm now starting to put together the AGMs and support our upcoming campaigns!'

Charlotte HughesVolunteer Engagement Coordinator

Charlotte has joined the team as Marrow Volunteer Engagement Coordinator.

'I feel extremely lucky to have joined Anthony Nolan and the Marrow team. I started volunteering for Marrow in my first year of university (2010, eeek!) after joining the register at a Lancaster Marrow event, and went on to spend two years as Lancaster Marrow's Vice President. I loved being a Marrow Volunteer – it's really rare to be a part of something at university which really makes a difference to people. After graduating I spent two years living in Toronto but you never really lose that Marrow love.

'My role involves working with our current Marrow groups to ensure we recruit the right quantity and quality of donors. I also work on expanding Marrow into new universities which is really exciting. My first project was Presidents' Day and the Marrow AGM. It was amazing to be involved on the other side and see all the hard work that goes into making these weekends truly amazing. I can't wait to see the results our Marrow volunteers will achieve this year and I'm really looking forward to working with them all. It's a special time to be involved, as Marrow is celebrating its 20th year in 2018!'

MARVELLOUS MARROW

Student volunteers around the country have got the new academic year off to a flying (and swabbing) start.

TIME FOR A CHEEKY SWABThis academic year has seen an exciting change for Marrow and Anthony Nolan, with the move from giving a spit to doing a cheeky swab for donor recruitment. Marrow groups were first to switch to swabs, and have been championing the 'Cheeky Swab' movement across the UK. As expected, they've also been coming up with innovative new names for their events – from Swab Shops, to Hobnob and Swab.

THE (LEGENDARY) MARROW AGMAt the end of September, over 200 Marrow voluntteers from 50 universities descended upon Birmingham for the legendary Marrow AGM. The weekend was packed with presentations, workshops and, of course, celebrations. We were joined by some incredible and inspiring supporters, including William 'Will The Weekend Warrior' Ash, who took some time out of his jam-packed schedule of 44 events this year to talk about his efforts to raise money and awareness for Anthony Nolan. Maya Knox-Macaulay – a Marrow Alumna and Anthony Nolan staff member – also took the stage to share her personal story with the volunteers.

At the AGM, we welcomed the new National Marrow Committee into post. The new committee members (pictured below) volunteer to help support Marrow groups across the country. They've already been meeting regularly with staff from Anthony Nolan to help shape Marrow's future.

REAL LIFE SUPERHEROES! In October, our heroic volunteers put on their capes and masks for another amazing Marrow Hero Week, where we saw over 60 fundraising and recruitment events in just seven days! There were some truly heroic fundraising events, from bake sales to bucket collections, movie nights to club nights, glow stick sales to brownie sales, mountain climbing to bike riding!

LIFE AFTER MARROWOur Marrow Alumni committee kicked off the year with the first Alumni Soiree. Past Marrow volunteers gathered in London for an afternoon of chatting, snacking, a little bit of dancing and a whole lot of reminiscing. We were joined by James Kustow, Marrow's founder, who kindly spoke about his Marrow experience. Kat Cunningham, President of the Marrow Alumni Committee said: 'It was great to see lots of alumni come together to catch up, and to see the enthusiasm so many people have to continue their involvement. We can't wait to get together again!'

Northampton Marrow volunteers showcase our new swab materials at their recruitment event.

Marrow alumni gathered in London to reminisce at the Alumni Soiree

Plymouth Marrow volunteers swing into action for Hero Day.

MEET THE NEW MARROWERS


STARS IN THEIR EYESAs part of Anthony Nolan's first-ever staff Wellbeing Week, staff thanked their 'stars' – people who had gone above and beyond to help them, and who live our organisational values. Insight found out some of the stories behind the stars.

Sam CoskunChristina Taylor from HR gave Samet Coskun from IT a star for being accountable by "being so helpful and keeping me informed during our email issues last week".

Christina explains: 'We had some issues with our emails, which I reported to IT. Sam had only just joined the team but he was on it straight away. He took personal responsibility for keeping us updated as IT worked to resolve the issue, and was just generally super-helpful!'

Sam says: 'Receiving a "thank you star" in my first week was a really nice welcome to the organisation. It motivated me to continue with my proactive approach. I've been here for over three months now and as you can see I'm still going!'

Carina IpNeema Mayor from Research gave Carina Ip from HR a star for being passionate and accountable "always going the extra mile".

Neema says: 'Carina is such a pleasure to work with – she's involved in so many things, but she always makes time to take an interest in people, follow up on things and check in to see how people are going. She goes above and beyond to help, even if it's not strictly speaking part of her role, showing that accountability as part of her team. What else can I say - everyone loves Carina!'

Carina says: 'It was a lovely surprise to get a star from Neema as she works in a completely different part of the organisation and unfortunately I don't get the chance to work with her a lot. When I have had the opportunity to work with Neema it's always been great. She gives us really useful, constructive feedback on our processes to help us improve every day.'

Ann O'LearyTrudy Ahyee from Research gave Ann O'Leary from Operations and Patient Services (OPS) a star for "focussing on our clinical trials management process to help improve it."

Trudy explains: 'I'm part of the Research team but I sit with OPS because I help recruit donors onto trials that other organisations are running. Ann has taken the time to really understand and champion the work I'm doing within OPS. She's raised the profile of what I'm doing and supported me to improve the service we offer, such as making sure that collection centres are comfortable with donors being involved in trials.

Some of the trials are quite big asks – for example one needs to collect 500ml of blood from both the patient and the donor, about a month before the donation date. By giving the collection centre a clearer process we can reassure them about some of their concerns.'

Ann says: 'It was really lovely for Trudy to recognise me in this way. The work Trudy does is really innovative and helps patients above and beyond our normal work to facilitate lifesaving transplants. But for both staff here in OPS and for collection centres it can often seem like just extra work because we don't hear back on the outcomes of the trials. We want to make the whole process smoother for collection centres and follow up with researchers to make sure the centres and our staff get to see the impact of the work they put in.'

Dominic BarkerTom Turner from Research gave his colleague Dominic a star for "saving me hours of copying and pasting by providing me with lots of data in a really useful format".

Tom explains: 'I was using TGS (Third Generation Sequencing) to analyse 126 cell lines, which are used as a reference point for scientists around the world to check their HLA typing. I needed to compare my results to the existing typing data for these cells, which sits in the IMGT/ HLA Database that Dominic helps to manage. To do it myself would have involved a couple of days of tedious copying and pasting, but Dominic exported them from the database for me in a format that meant I could compare them quickly and easily.'

'I found several new alleles using the high-resolution TGS typing, and now that I've published my results, Dominic has updated the database so anyone in the world can refer to the highest possible resolution typing for these cell lines. Dominic has really helped me to use TGS to drive the field and our knowledge of HLA forward.'

Margo UrbanMargo from IT received stars from several members of the Stem Cell Search and Selection Services team in OPS – including Nicole Stanley and Charlotte Green – for helping them to develop their new search system.

Nicole says: 'The new system has been a long time coming. Margo took us back to square one – but in a good way! She got us to think about what we really want and need, forgetting about what we're used to.

It's been a very collaborative process – rather than the traditional approach of us setting out our requirements and the software agency going away and making something, we've had input at every stage, and have seen the system develop. Margo has really drummed that attitude of improving every day into us, getting us to think big and realise that anything is possible and things can always be improved.'

Charlotte agrees: 'Margo is very diplomatic, friendly and approachable – our meetings with the agency always go better when Margo is there! I think if Margo hadn't been involved, the new system would have looked a lot more like the old one, we wouldn't have made such good progress, and we wouldn't have such a good relationship with the developers.'

Margo says: 'The stars were a lovely gesture, and a pleasant surprise – I was just doing my job really. The search team have been brilliant to work with. Seeing beyond the system you use is often the biggest challenge for any 'end user' – we tend to think about our day to day work through the systems we use to do it. I helped them to go back to basics and think "why am I here? What is my job, and what's the absolute best way of doing it?"'

PASSIONATE

PATIENT-FOCUSED

INNOVATIVEIMPROVING EVERY DAY

ACCOUNTABLE

Carina

Sam

Ann

Dominic

Margo


We produced a report, Recovery After Transplant: Who Cares?, based on a survey of over 300 patients who had received stem cell transplants. The report highlighted worrying gaps in post-transplant care, especially after the first 100 days following a transplant. Up until this point, post-transplant care is funded by national health commissioners as a 'specialised service', but afterwards funding responsibility falls to local commissioners.

Ruth, one of the patients who shared her story in the report, received a transplant in 2016 to treat acute myeloid leukaemia (AML). 'The biggest downside of my whole transplant experience has been the complete lack of support since

leaving hospital,' she said. 'It felt like I was on my own - my GP has offered me nothing. I'm on the waiting list for a counsellor, but it's very long.'

Through our 'Who Cares?' campaign,

over

3,000 people

emailed their MP to ask them to back our call for an urgent review of the care and support that patients receive after a stem cell transplant.

We also held an MP drop-in session for the campaign in Parliament. We were joined by the three faces of the campaign – Chris, Ruth and Joanna (pictured with Mark Tami MP, Chair of the APPG on Stem Cell Transplantation) – who spoke to more than 30 MPs about their personal experience of having a stem cell transplant, and why it's so important that patients get the right care and support during recovery.

'The campaign successfully brought the issue to the attention of MPs and other national decision-makers,' says Simon Butler. 'We are now working with NHS England on a vital project to map post-100 day care.'

RECOVERY AFTER TRANSPLANT ACCELERATING CLINICAL TRIALS

Last autumn, Anthony Nolan campaigned for an urgent review of the care and support that patients receive after a stem cell transplant.

Anthony Nolan's IMPACT clinical trials network was officially launched on 1 November, with the aim of accelerating clinical trials for stem cell transplantation and ensuring treatments reach patients faster 'from bench to bedside'.

Clinical trials are crucial in forming the evidence base to improve outcomes, but there are currently very few clinical trials in this area, primarily due to insufficient numbers of stem cell transplant patients in individual transplant centres.

IMPACT will enable more clinical trials to take place by providing the infrastructure that transplant centres need to work together to set up studies, recruit patients and share data. The £4million programme will establish up to 12 clinical trials involving approximately 1,500 patients – a marked increase on current numbers.

Our IMPACT partners are the University of Birmingham, Leuka, NHSBT, the National Institute of Health Research and 22 transplant centres around the country – 10 have received a grant for a research nurse to facilitate the trials, and a further 12 can recruit patients to the trial if that's within their capacity.

Over 100 guests attended the IMPACT launch event at the Reform Club in London, including patients, clinicians, researchers and policymakers.

IMPACT Medical Director Professor David Marks, said: 'New, and improved, treatments for stem cell transplant patients can only become possible if they are evaluated and approved as part of a clinical trial. We have been unable to advance treatments at the same rate of other developed countries but, by making it easier to set up trials and recruit participants, IMPACT will ensure that medical advances reach patients more quickly and help fill the gaps in our current understanding.'

Deborah Harkins, who received a stem cell transplant for acute myeloid leukaemia in 2016, spoke at the event about what IMPACT means for patients. 'I have spoken to other patients about trials and most people I have spoken to, especially those at high risk of relapse like me, wish there were more opportunities to be involved in trials, to test out new treatments,' said Deborah.

'I think about the amazing young man who donated his stem cells to me every day. We owe it to my donor and all the others who give the ultimate gift, to make stem cell transplants work every time. IMPACT gives us the opportunity to get closer to that goal.'

With one trial already recruiting patients, and two more due to start early this year, the network aims to implement three trials a year for four years.

For more information on IMPACT see impactpartnership.org.uk

Chris (far left), Ruth, Mark Tmai MP, Joanna at the drop in session in Parliament.

Deborah Harkins, stem cell transplant recipient.

'I have spoken to other patients about trials and most people I have spoken to, especially those at high risk of relapse like me, wish there were more opportunities to be involved in trials, to test out new treatments.'

This change in funding arrangements takes place despite the fact that patients may experience the effects of treatment months or years beyond the 100 day point.'

'Our research found that this 100 day cut-off leads to gaps in the post-transplant services that hospitals are able to provide, with many local commissioners unclear that it's their responsibility, and only one in ten indicating that they had specific arrangements in place.

Simon Butler, Head of Policy and Public Affairs at Anthony Nolan.

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