Thanks to you - Addenbrooke's Charitable Trust

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Autumn 2017

Thanks to you

Making a difference for patients together

In this issue:

Jodie’s fundraising mission Changing patients’ lives together Supporting Children’s Services

Welcome

Welcome to the Autumn 2017 edition of Thanks to you. It is with real delight that I can give you some great news – the new haematology day unit for blood cancer patients is now open, thanks to supporters like you! Your kind donations and fundraising activities helped to raise almost £350k in just seven months! Truly amazing. Patients are now benefiting from more space and privacy, new equipment, wall art, treatment chairs, a courtyard garden, and video conferencing facilities – among many other things. You can see some photos of the new unit in the middle pages of the newsletter. You can also see how charitable support like yours is transforming

young patients’ lives as we have been working closely with doctors and nurses to ensure children receive the very best care and treatment possible.

If you have any questions, please call us on 01223 217757. We’d be delighted to hear from you.

Lastly, I’d also like to introduce myself as the newly appointed Director of Fundraising. I have been with ACT for almost eight years now, working in a number of departments from Communications to Development and am so excited to now head up our wonderful Fundraising department.

Thank you once again for all the fantastic support you give. Best wishes,

Gemma Downham Director of Fundraising

Letting children be children Every year, over 80,000 children from all over the east of England and beyond come to Addenbrooke’s and the Rosie for specialist treatment and services. Addenbrooke’s provides the widest range of specialist children’s services in the region, including intensive care, surgery, anaesthesia and ear, nose and throat. The Rosie also has one of the UK’s largest neonatal units. And the need for our care is growing. Now one in five people in the region is aged under 19; that’s well over a million children who need us. They need you too. Kind supporters like you make a

tremendous difference to our young patients, many of whom will be scared about what is happening to them. As you can see in this childrenthemed ‘Thanks to you’, with charitable funding we can improve their time with us through specialist equipment and training, therapeutic play and activities such as the new Jungle Trail which gets them out and about – letting them be children, not simply patients.

Cover image: Patient, Max Rowlandson, with his mum Jodie and sister India 2

I wanted to take this opportunity to thank everyone who supports our children’s care at Addenbrooke’s and the Rosie.

Amanda Cahn Associate Director of Women and Children’s Services

Jodie’s fundraising mission for children

in hospital

In 2010 Jodie Rowlandson learned that her two year old son, Max, had been diagnosed with leukaemia. She was pregnant at the time with her daughter, India. “I felt powerless when I heard the diagnosis. I had to entrust Max solely to the hands of the doctors and the other staff in the hospital. You feel like there’s nothing you can do to help. I realised that I could fundraise, however.”

A long journey “Max is nine now. It was a long, horrific journey. He had more than three years of chemotherapy, steroids, scans and operations and he still comes in for regular check-ups. We’re friends with many of the families that we met on the ward and when I fundraise now, it’s for those families, not just Max. It helps all of us.”

Saying ‘thank you’ for wonderful care Jodie has organised a number of events to raise money for the children’s wards at Addenbrooke’s, including ‘Max’s Military Run’ and ‘Max’s Marvellous Family Fun Day’, which has just been run for the second time and raised over £12,000 in total. Jodie and her family and friends have now raised over £35,000!

play specialists, healthcare assistants and medical staff who provide such excellent care for their loved ones.

Jodie has built many bonds with other families of poorly children and she continues to inspire them to take control of what they can do at a time when all is a haze. Together this is their way of thanking the doctors, nurses,

“Fundraising for Addenbrooke’s helped; it made me feel like I was doing something. The more we raised, the better it made me feel. I was helping other parents’ children, not just my son. I needed to feel like I was doing something.”

Jodie Rowlandson

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The difference

Thanks to your heartfelt donations and fundraising activities, we are are transforming patients’ lives, each and every day.

your money makes Highlighted below are just a few examples of the projects your kindness has made possible.

Supporting bereaved parents Sarah Kirkby raised £1,000 to buy a cuddle cot for the neonatal intensive care unit at the Rosie after her daughter Jennifer was born prematurely at 26 weeks, 22 years ago. Jennifer sadly passed away aged just seven days and

Sarah wished she had had a refrigerated cuddle cot at the time to allow her to spend last precious moments with her baby; a time when every minute counted.

Following the Jungle Trail Children who stay in hospital for long periods lose normal opportunities to get out and about and this can mean that their physical, emotional and cognitive development can suffer. The Jungle Trail, partfunded with £2,000 thanks to kind supporters, has been created as a fun way to promote

Seeing is believing Since 2013, more than 8,000 pre-school and early primary school children in Botswana have had their vision tested and over 10,000 people with diabetes have been screened for sightthreatening retinopathy. This is all thanks to Addenbrooke’s staff volunteering through Addenbrooke’s Abroad.

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Much of the work has been funded through Seeing is Believing. The programme is Standard Chartered Bank’s global community investment programme to tackle avoidable blindness. For more than a decade, Seeing is Believing has helped over 150 million people across the world.

health and build confidence. Thousands of children who stay at Addenbrooke’s each year can now enjoy two different trails, predominantly outdoors, where they can track down tactile pictures of animals, take pencil rubbings, answer questions and make drawings around the jungle theme.

Helping patients A new £23,000 oscillator (£20,000 of which was raised through Kieran’s Memorial Golf Day) has been purchased for the paediatric intensive care unit. This equipment is used when young patients require very high

volumes of ventilation, which, with conventional treatment, can strain and damage their lungs. The oscillator allows rapid ventilation at much lower pressures, meaning the children recover faster.

Laughter specialists ACT has awarded £15,000 to once again fund and train entertainers who, through therapeutic play, interaction and improvisation, bring muchneeded fun and laughter to

children on the wards. Children can become bored and frightened but feedback has shown they benefit hugely from interaction from non-medical professionals.

Classifying malignant germ cell tumours Malignant germ cell tumours are cancers of egg and sperm-forming cells occurring mainly in young people. They arise in the testes and ovaries but also in other places such as the base of the spine, back of the abdomen, centre of the chest and in the brain.

It is important to establish tumour type before a clear diagnosis and treatment plan can be identified but, because the tumours are in areas of the body that are difficult to access, taking biopsies can be challenging and carry a high risk

of complication. Dr Murray has received an £18,580 grant from ACT to develop a second set of blood tests that could help tell the tumour types apart.

Support for children with brain injuries £10,000 has been awarded by ACT to support young people with acquired brain injuries. The grant will fund a support co-ordinator to work

with these children and their families not just in hospital but throughout the young person’s rehabilitation and education until they turn 24.

A new generation of nebuliser A grant of £3,600 has been awarded to provide nebulisers for new patients with cystic fibrosis. These children have complex health issues and need to be given nebulised antibiotics twice a day to maintain their

health. This can be time consuming and stressful for the whole family. ACT funding will provide a new generation of nebuliser to make taking medication easier. 5

Thanks to you

“Huge thanks to all our amazing fundraisers, who go the extra mile for Addenbrooke’s and the Rosie hospitals.”

Thank you!

For information about fundraising for the hospitals or to tell us about your fundraising activities, please call us on 01223 349805 or email fundraising @ act4addenbrookes.org.uk

Refurbished quiet room provides respite for radiotherapy patients and their families The William Brown Trust raised an amazing £10,000 to fund the refurbishment of a radiotherapy quiet room. The room, opened in April, can now be used by patients and families who need time away from the hustle and bustle of the hospital ward.

Tesco staff making a difference

Guinness World Record set!

Proudly supporting ‘Pennies for Spenny’

A team from the transplant unit at Addenbrooke’s teamed together with Tesco Milton Superstore to sell books and DVDs, raising £590 for patients in their department. Tesco staff really threw themselves into the fundraising, dressing in Hawaiian and summer themed clothes to support the event.

Paul Brown from The Adaptones set an official world record in aid of the Addenbrooke’s Breast Cancer Appeal for playing the longest ever live version of Green Onions on an electric organ! Paul played the tune, by Booker T and the MGs, for over three hours and raised over £1,000!

Baby Spencer was born 13 weeks early and cared for in the Rosie’s neonatal intensive care unit. To say thank you, mum Emelie began her fundraising plea: ‘Pennies for Spenny’. In April, proud great-grandparents Charles and Maureen generously asked for donations instead of gifts for their 60th anniversary and raised over £160!

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Nathan’s story

“Nathan has been coming to Addenbrooke’s since he was born. Mum and dad, Suzan and Neil, tell their family’s story... “Nathan was in a lot of distress when he was born. He came out, struggling to breathe. They had to keep him intubated and every time they tried to remove it, his SATs (oxygen saturation) would drop. Initially we thought he had a heart condition, and he was transferred to Addenbrooke’s. However, a scan revealed he’d had a bleed to the brain. We were introduced to the consultants, Jag and Wilf, who will forever hold special places in our hearts. The haemorrhaging Nathan had sustained just after birth had turned into hydrocephalus, and the blood within his skull had clotted and blocked the duct at the back of his neck. When he was a few weeks old, Nathan received a permanent shunt to relieve the pressure inside his skull. The operation was a great success and he changed overnight. It was like we’d got a new son! We’d been warned about the potential implications to his health but we had no idea how serious his condition was likely to be. Over the years, Nathan’s shunt needed to be replaced several

“Nathan has given gth, me so much stren determination and a lot knowledge. I have to thank him for.”

Suzan Cain

times and, in 2008, we were given two more devastating diagnoses – autism and worster-drought syndrome, a rare form of cerebral palsy. In 2015 he had to have more major surgery on his spine to correct his scoliosis. Without the wonderful staff at Addenbrooke’s, Nathan wouldn’t be here today. When we saw Wilf just recently, seeing him walk up the corridor to greet us even though we hadn’t seen him since Nathan was a baby - my face just glowed because it was so nice to see him! It was after Nathan’s last operation that we decided we needed to do something to recognise what Addenbrooke’s has done for us over the years.

“The staff at Addenbrooke’s are amazing. They’re very good at taking the weight off your shoulders.”

Neil Cain

We wanted to do something big, bold and make lots of money and so organised a charity ball, Nathan’s Extravaganza! It was an emotional and exhilarating night and we raised over £2,000 for ACT. We’re looking forward to the next one which will coincide with Nathan’s 21st birthday next year. We rely on the hospital to do what it does best, and then try to get back to some sort of normality. But that’s difficult for children like Nathan because he will have to rely on hospitals for his whole life. There’s a tie between Nathan and Addenbrooke’s and we are so very grateful for everything they have done, and continue to do, for him.” 7

The Haematology Day Unit You made it happen!

Addenbrooke’s blood cancer patients can be assured of world class treatment delivered by the very best clinical staff. But up until now the facilities where care takes place had fallen far short of world class. A perfect, lighter, brighter space was found but it needed a complete refurbishment. So, in March we launched an urgent appeal to fund additional life saving equipment, specialist chairs, art and patient comforts. Hundreds of supporters like you responded with great generosity and kindness of heart and the total needed was raised in just eight months!

The new, amazing space opened in September and is already making a big difference to the day-to-day experience of blood cancer patients. Among many other changes, capacity has more than doubled which allows for a wider range of treatment to be delivered and to bring down waiting times. Five new side rooms also allow for better infection management.

“Going into the building for the first time was absolutely amazing. I was struck by the size of the unit compared with E10. It’s going to be excellent, making it a lot easier for patients like myself to access treatment in a more quiet and peaceful space. Thank you to everyone who has donated from myself and all the other patients.” Haematology patient The new unit is spacious so loved ones can comfortably accompany patients during their treatments 8

Dean Morley

I donated so patients can be treated more quickly Mervyn Martin receives treatment at Addenbrooke’s for bone marrow cancer and he generously supported the appeal. “I was told that there weren’t enough video conferencing facilities and because of that,

when the doctors get together to discuss cases, they don’t have time to review about 20% of the people on the list. So they get deferred to the next week. I thought, if I can contribute to another video conferencing suite then there is a chance that these people will be treated more quickly. That has to be good.

The care can’t be faulted; not in my case. They got me from where I was, which was immobile, to where I am now, which is leading a pretty normal life. I am happy to be able to contribute. You never know when cancer might hit you. Everyone is healthy until they are ill.”

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Spotlight on

Dr Yogen Singh Meet Yogen Singh, Consultant in Paediatric Cardiology and Neonatal Medicine at Addenbrooke’s. He tells us why there is nothing more important than putting smiles back on children’s faces. “I don’t believe in competition and I am in competition with no-one. I am running my own race to make myself continually better. I love and enjoy working with all the people around me, even when I hardly get a chance to say it.” What made you decide to enter the medical profession? My parents tell me that, right from early childhood, I always wanted to be a doctor. I had seen doctors looking after sick children and I wanted to be like them - to bring back smiles on children’s faces. During my training I found paediatric cardiology fascinating and neonatology a fast-evolving sub-speciality with exciting opportunities. I could never choose which I like most and today, here I am with expertise in both. What prompted you to work for Addenbrooke’s? During my first visit to Addenbrooke’s I was amazed by the dedication of the staff and the 10

hospital’s values. I am passionate about delivering high standards of care and getting involved in teaching and training medical students. Addenbrooke’s provides me all these opportunities.

How has ACT funding helped you? The ACT team is simply amazing and has been really supportive for our service development in paediatric cardiology.

What does a normal day entail?

ACT helped us to raise funds for our echocardiography machine, which allows us to see over 2,000 patients in paediatric cardiology outpatient clinics. Kind donors have funded a cardiac nurse specialist, and they are making a great difference in supporting the families of our young patients, especially those with heart defects, and needing open bypass surgery.

I don’t think there is a ‘normal’ day in my work! Doing outpatient clinics for children with heart problems; looking after sick babies in NICU, children in PICU and those with cancer, all of whom need my cardiology expertise, makes every day exciting. What’s the best thing about your job? Working with children and their families - doing work I’m passionate about, providing continuity of care for children with congenital heart defects and seeing them leading a normal or near normal life gives me immense satisfaction. What do you not like about your job? I wish I had some extra time to support the teams. There is so much to do, which can make a difference in children’s lives. But being a positive person with high motivation and dedication to my work provides me tremendous energy.

I am really looking forward to the echocardiography simulator ACT is funding. This would allow me to train junior doctors in acquiring echo skills using a simulator rather than sick babies. What do you do in your spare time? I have a lovely family who provide me with strength and stability. We love spending time together, as much as we can, and doing things together whatever it involves – it’s so much fun. I am also enjoying developing a training programme for neonatologist-performed echocardiography. I get to share my skill with other doctors in Cambridge and beyond!

Have a heart, leave a legacy Thanks to a generous gift in a will from supporter Eva Chandler, we have funded a new paediatric cardiology nurse specialist post, along with new equipment to train doctors in echocardiography. Katie Bradly Russell, pictured above left, works with young patients to help them understand their heart conditions. “More often than not, our patients access the service very early on in life, even before birth, and remain with us until they’re 16. This gives a unique opportunity to develop a more holistic approach to care, being a constant presence firstly for the family and then increasingly for the child as they get older. It is only with thanks to the gift that Eva left in her will that we can offer this special support.

We are proud to have set up a new home monitoring system, working with families, community nurses, dieticians and health visitors to ensure children are thriving in the community. “

It is wonderful to work in a supportive, adaptive, family focused and hard working team. We have a daily catch up with each other and usually find something to giggle about!

Helen Shelley (above right) , who job shares the role, adds: “We also provide advice by telephone and email, visit inpatients and outpatients, liaise with surgical centres, support health professionals and organise teaching and study events.

We are thankful to Eva, for her legacy, which is helping young patients to understand their heart conditions. From us, the children we care for, and their grateful families, thank you Eva.”

For information about leaving a gift in your will to help patients, please contact [email protected] or call 01223 254841.

Keeping babies safe Heart problems are the most common type of birth defect, affecting up to nine babies in every thousand born in the UK. Early diagnosis and intervention is very important. Echocardiographs are used to help diagnose heart conditions in babies and children. This uses ultrasound to create images of the heart, to help the doctor identify potential abnormalities. Training doctors to use this equipment, however, is fraught with difficulties and the only option for learning has been on the babies themselves, who are often sick and fragile.

This isn’t ideal for a number of reasons, including the increased risk of infection and the potential detrimental effects arising from removing the baby from the incubator. The gift Eva Chandler left in her will has enabled the funding of a newly developed paediatric cardiology simulator, costing £22,000. This innovative computer-driven mannequin helps train doctors in echocardiography, enabling them to master the skills required under safe and risk-free conditions.

“The training simulator will mean more doctors can be trained to spot heart defects in babies and children”

Dr Yogen Singh, Consultant Paediatric Cardiologist 11

So many ways to help Peter shares skills to support patient care Peter Stanley, 60, worked at BP in senior management roles for 30 years and, following his retirement, wanted to share his skills including problem solving, governance and policy writing to benefit a local charity.

Event calendar Thursday 2 November Bruch Violin Concerto and Beethoven Symphony No.6. West Road Concert Hall, Cambridge. Raising money for Bella’s Fund – helping to fund research into children with inflammatory bowel disease.

Sunday 26 November Rosie Rudolph Run. Don your antlers! Staff from the Rosie are organising the annual Christmas 5km fun run around the hospital campus.

Sunday 22 April 2018 Virgin Money London Marathon. ACT applications for the 2019 Virgin Money London Marathon (21 April 2019) become live. Closing date is Friday 2 June 2018.

Peter started volunteering with ACT’s corporate services team in April 2016 and has been giving support in a number of ways so far; from developing our policies and procedures to helping with our re-constitution process and being part of our annual report team. There’s always something for him to help with! Peter said: “If you want to contribute, there’s nothing better than supporting ACT and feeling appreciated. The people are very supportive and caring. Helping out just one day a week is something I look forward to. It’s very rewarding to see how you can make a difference. You don’t have to be a rocket scientist, people can contribute at so many different levels – there are many ways to fit in and help support patient care.”

We are also delighted to be the chosen charity for hoohaah running events 2018.

To find out how you can help in the office or out in the community, contact us on 01223 217757 or see www.act4addenbrookes.org.uk/volunteering.

For more information on ACT’s events, contact Emily Willdigg, Events Fundraiser, on 01223 349885, [email protected] or go to www.act4addenbrookes.org.uk/events.

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• 11th March Thetford Forest 10k • 29th April Childerley Estate 10k • 20th May Barr Ellison Wimpole 10k • 10th June Hatfield Forest 10k • 7th Oct Wimpole Estate Half Marathon

Addenbrookes Charitable Trust’s

Giving Trees

Addenbrooke’s charity Christmas cards

Pop into our office, call 01223 217757 or go to our website to see this year’s exciting designs www.act4addenbrookes.org.uk/christmascards

Our new Giving Tree is now installed in the oncology department waiting area! We invite you to make a donation to personalise a leaf on this beautiful handcrafted sculpture. You might like to dedicate a leaf to: • Say thank you for care received • Mark an important milestone such as receiving the ‘all clear’ or being five years’ cancer-free • Remember a loved one

Make a Will Week 23-27 April 2018

For more information, please contact Alice Macek on 01223 254841 or [email protected]

Each year in spring ACT holds Make a Will Week, when a group of local solicitors and will-writers kindly agree to waive their usual fees and write or update a simple will in return for you making a donation to Addenbrooke’s Charitable Trust. In 2018 you can take part from 23-27 April. Find out more by visiting act4addenbrookes.org.uk/makeawill or call 01223 217757.

To find out how you can get involved visit www.act4addenbrookes.org.uk/ABCappeal or call 01223 217757

Keeping in touch There has been a lot in the media recently about changes in data protection practices. Please be assured that ACT will look after and use your data with the utmost care, and will never swap or sell it. You can see our fundraising promise and privacy statements, which explain what you can expect from us and how we collect and manage information about you, at act4addenbrookes.org.uk/fundraisingpromise. We hope you enjoy getting postal updates from us but, if you want to change the way we communicate with you at any time, just contact our supporter care team by calling 01223 217757 or emailing [email protected].

“Host your own party for friends, family and colleagues this October and help change the lives of breast cancer patients like me.”

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Former breast cancer patient, Ruth New

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25/07/2017 10:52

Therapeutic play activities Children can be easily scared at the prospect of going into hospital. Yet specialist play staff can help them cope with hospital treatments, reducing stress and anxiety and the likelihood of them suffering psychological trauma following a difficult stay. Therapeutic play can help children understand what is happening to them through age-appropriate communication and ensure that their voices are heard in planning future health care.

Lovely Lego Children are now being prepared for their upcoming MRI and CT scans through role-play activities with ACT-funded Lego models. Experience has found that children are more enthusiastic about therapeutic role play with Lego as the blocks are very familiar and associated with having fun. With support from qualified and experienced play specialists, children as young as four can be supported through their MRI scan without sedation or anaesthetic.

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Colourful characters Kind supporters have also funded two new specialist play puppets, which help children prepare for medical procedures. Nurses use the puppets to teach young patients about their treatment through play, which goes a long way to put their minds at ease. These puppets are anatomically correct and can be used to demonstrate actual medical devices such as catheters or NG tubes. They help children and young people understand how the devices work, how they will go in and how they will come out. Through role play with the puppets, children feel more in control of what is happening to them.

“The play therapy is priceless when Kayla is in. It’s the perfect way to explain what treatments will be given and how they will affect her. It makes her feel much more comfortable and I feel in control. It also means that I don’t have to try and explain things that I don’t really understand. “ Siana Hay, mum of five-year-old Kayla who was diagnosed with Philadelphia positive acute lymphoblastic leukaemia in May this year.

Your impact – in numbers Supporters like you transform patients’ lives across Addenbrooke’s and the Rosie. Did you know that, last year:

760

families stayed in Acorn House and Chestnut House. This ‘home from home’ accommodation,

part funded by ACT, allows parents to be close to children receiving overnight treatment or care.

320

individuals and couples received counselling, part funded by ACT, following

stillbirth, miscarriage and trauma related to pregnancy loss and birth.

450

children with development difficulties benefitted from music therapy,

developing their social interaction with others, building their confidence and self-esteem.

5,600

babies were born in the Rosie,

partly equipped with ACT funding.

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babies were born in the newly upgraded

birthing pool room.

£21,000

of NHS funds have

been saved by using new prematurity of retinopathy remote assessment equipment which means babies can have their eyes tested in their local hospital, rather than being unnecessarily transferred to Addenbrooke’s.

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children received support this year with

their type one diabetes through fun diabetes camps with peers facing similar challenges. In the past five years 295 children have participated in these camps and 90 are booked to attend in 2018.

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Autumn 2017

Donation Form

To donate online please go to www.act4addenbrookes.org.uk/donate

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We hope you enjoy getting postal updates from us but, if not, just contact our supporter care team via [email protected] or by calling 01223 217757. We promise never to sell or swap your details. You can see our fundraising promise and privacy statements, which explain what you can expect from us and how we collect and manage information about you, on act4addenbrookes.org.uk/fundraisingpromise or by contacting the office. ACT will have regard to your donation wishes but they will not be treated as a binding restriction. This ensures that we can direct funds towards the greatest need, if circumstances change. Please contact us if you require further explanation.