R O YA L
B R O M P T O N
&
H A R E F I E L D
H O S P I TA L S
C H A R I T Y
N E WS BE AT SPRING/SUMMER 2019
Dara Ó Briain at our 100 Hearts, a Night of Comedy
JOI N OU R F IG H T AG A I NST H E A RT A N D LU NG DI SE A SE
// WELCOME //
Welcome s the days get warmer, I extend a heartfelt welcome to you from our Spring and Summer News Beat. Now in its new format, meaning we no longer have to fold copies to escape punitive postage costs, it's just as packed full of news and stories. I would like to thank all the amazing stars and the support crews who made our third and final 10 0 Hearts at the London Palladium such a success. We have been incredibly luck y to have Rosie and Philip Pope working alongside us to make this event happen – Rosie and Philip, we cannot thank you enough. From half marathon runners to cake bakers, I wish to thank the hundreds of you who have supported us, raising funds for our two appeals throughout 2018. More and more people are benefitting from the pioneering cystic fibrosis ambition. And since the NHS still doesn’t fund the life-saving organ care systems, our Charity has stepped in to buy as many as we can – though we would be nowhere without our generous and amazing donors and fundraisers, like Bob and Annette Culshaw (see pages eight and nine). I hope you enjoy our new look News Beat –
" We would be nowher e w it hout our gener ous a nd a ma zi ng donor s a nd fundra iser s" Above: HRH The E a r l o f We s s e x a n d C h a r i t y C EO Gill Raikes at 100 Hearts
we have certainly enjoyed putting it together. Please keep telling us your stories, and please keep supporting our appeals. Gill Raikes, Chief Executive
Note from the Editor
I hope you enjoy this edition of News Beat! As always, we love to hear from you. So, if you have a story to tell that you'd like us to share in the next News Beat, please email r.cresswell@rbht.nhs.uk.
Rachel Cresswell
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R B HC h a r it y, R oy a l B r ompt on Ho spit a l , Syd ne y St r e e t , S W 5 3 U E
// OUR APPE AL S //
Our appea ls Supp or t i n g H a r ef ield’s world- c l a s s Tr a n spl a nt P r o g r a m me
Since 2013, Haref ield has been using organ care systems (OCSs) to perform life-sav ing hear t transplants. T he OCS keeps donor hear ts functioning as they would inside a liv ing person. In turn, donated hear ts are v iable for up to four times longer; they can come from fur ther away; arrive in better condition, and g ive medical staff longer to prepare for lifesav ing surger y. Not currently funded by the NHS, our Harefield Transplant Appeal has been raising money to fund this pioneering technolog y and with you, we've reached our £50 0,0 0 0 target. A special thank you to Kusuma Trust U K who are match funding £10 0,0 0 0 towards this life-saving Appeal. Dr Soma Pujari (pictured left), Co-Founder and Executive Trustee said, “We believe that the organ care system is a vitally important device to maximise the chances for these patients who have few alternative options. W hen we came across the organ care system appeal from the Royal Brompton & Harefield Hospitals Charity we wasted no time in approaching them.”
Tr a n sfor m i n g t he l i ve s of p e ople w it h c y st ic f i br o si s
Above: Su Madge, Director, Adult Cystic Fibrosis Centre and Helen Parrot, A ssociate Director of Rehabilitation & Therapies
We’ve been working with Royal Brompton’s Adult Cystic Fibrosis Department to redefine treatment for cystic fibrosis (CF), by supporting the development of a digital platform to give people with CF more control over their care. Following the co-design process, the Cystic Fibrosis Department is now working with leading technology companies, Medopad and Nuvoair, to plan the platform’s functionality. Then, in the near future, feedback on a prototype version will be gathered from staff and patients. Thank you for your support and for enabling us to reach beyond the ‘now’ to ‘new’ to improve the lives of people with CF. We look for ward to continuing this project into the first half of 2019 - can we count on your support? Go to rbhcharity.org /cfappeal
Read about our 2019/20 appeals at rbhcharity.org @ r b h c h a r i t y / r b h c h a r i t y. o r g
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// WHAT ' S NE W //
WH AT ’ S NEW?
From stand-out events, to some very special fundraisers it’s been a busy period for the Charity as we look ahead to the summer season.
T E A M H I TA C H I 4 0 0 ' S EPIC CHALLENGE
Danny D r i n k w a t e r, Álvaro Morata, Billy Hughes and Willian
YO U N G PAT I E N T S MEET CHELSEA IDOLS
Over the past six months, we’ve been working with Chelsea Football Club and their Foundation to give young patients from our hospitals the chance to meet their football idols; watching their favourite
players being put through their paces at training before the opportunity for pictures and autographs. Nicky, mother of Billy Hughes, a cystic fibrosis patient at Royal Brompton who came along, said ‘It’s days like these that really perk Billy up when he isn’t at his best emotionally and so today has been great for him.’
Hitachi Capital’s elite cycling squad, Team Hitachi400, raised £33,000 for our Charity following a mammoth four-day cycle from the UK to France. The team cycled 400 miles, crossing the Channel, then finishing their marathon journey in Bordeaux. Hitachi Capital is one of our long-term corporate partners after one of its employees, Vanessa Bradley, received a new heart and set of lungs at Harefield Hospital in 2013. Vanessa returned home six months after being admitted to hospital. Very soon afterwards, she was back at work and remains an active member of the Hitachi Capital team.
The Charit y loses a close friend
In November, the Charity team and trustees were very sad to learn that fellow trustee and close friend, PROFESSOR TIM E VANS had passed away. Charity CEO, Gill Raikes, said "From the moment the new Charity was formed, Professor Evans was a valued supporter; always there for advice and he often came to our events, bringing colleagues and his family with him. We will miss him greatly – he really has been taken from us too early.”
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R B HC h a r it y, R oy a l B r ompt on Ho spit a l , Syd ne y St r e e t , S W 5 3 U E
// WHAT ' S NE W //
Director of Tr a n s p l a n t , M r André Simon and HRH The E a r l o f We s s e x
A R OYA L N I G H T O F C O M E DY
Thank you to everyone who joined us for the phenomenal final 100 Hearts, a Night of Comedy at the London Palladium, featuring a stellar line-up that included Rob Brydon, Dara Ó Briain and Greg Davies. You helped us raise an astonishing £180,000 which will support our Cystic Fibrosis and Transplant Appeals. Thanks to the generosity of our sponsors, every penny raised will go directly towards these life-changing projects.
L O N D O N M A R AT H O N 2 0 1 9
We’re delighted to announce that Mark Johnson has been given our Charity place for the 2019 London Marathon in April. Mark ’s son Tate has been under the Royal Brompton’s world-class care since he was born, after being diagnosed with a Ventricular Septal Defect (VSD). If you’d like to support his fundraising efforts, visit virginmoneygiving.com/mark_johnson. Or come and join our cheer squad on Sunday 28 April to support Mark and all our other brilliant runners taking part.
C OR P OR AT E SU PP ORT We would like to give thanks and celebrate our corporate partners who have contributed to all the incredible things that we have achieved this year. Aerotest Ltd, The Chelsea Courtyard, Goldman Sachs, Hitachi Capital Finance, Keir, Knight Build, Lee Bolton Monier Williams, Metro Bank, Miles Commercial, Paxton & Whitfield, Pemberton Greenish, Sainsburys - Sloane Ave, Savills, Tesco Rickmansworth, Three Choirs Vineyard, and Universal Consolidated Group Ltd.
@ r b h c h a r i t y / r b h c h a r i t y. o r g
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// E-OBSERVATION APPE AL
//
E -Obser vations: Cha r ting a new futur e O u r n ew A p p e a l i s r a i s in g £ 20 0,0 0 0 f o r a d i git a l s o l u t i o n to p rov i d e t h e b e st p o s s ib l e c a re f o r o u r p at i e nt s a n d s u p p o r t clin i c a l st af f i n t h e ir d ay-to - d ay ro l e s . WHAT ARE E-OBSERVATIONS?
The e-Observations system, also called ‘E-Obs’, is a digital solution using a mobile device which records the vital signs of a patient. The device will support nursing staff in collecting patient observations and creating a score that assists in making clinical judgements when treating a patient.
BENEFITS FOR STAFF AND PATIENTS 1. Standardisation of care
E-Obs standardise the assessment and response process across both Royal Brompton and Harefield Hospitals. By collecting the data electronically, using National Early Warning Scores (NEWS), our patients will receive a clear plan of care that can be communicated to our clinical teams quickly and easily across both sites in standard language.
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2. Right time, right place
Automated alerts will ensure that patients are seen as soon as inter vention is needed and by the relevant clinician, who will be alerted to the escalation and can review the obser vations promptly, either face-to-face or remotely through a mobile device.
3. Trigger technology for sepsis
This Appeal will support clinicians in identifying early signs of patient deterioration and escalate the treatment of patients at risk of sepsis, as well as Acute Kidney Injury. For example, the appropriate clinician can be alerted when a patient’s vitals indicate suspected sepsis, using algorithms and track-and-trigger systems alongside our nurses’ own expertise.
R B HC h a r it y, R oy a l B r ompt on Ho spit a l , Syd ne y St r e e t , S W 5 3 U E
// TITLE //
4. Automated accuracy
At a time when nurse staffing resources in the NHS are stretched, e-obs can help nurses to calculate NEWS scores more promptly and process them electronically, escalating when required. In turn, our patients will benefit from improved obser vations accuracy, resulting in improved patient outcomes. By supporting this Appeal, you’ll help us to harness the latest technolog y to support our nurses in providing the best possible patient care.
FOU L I S WA R D E DUC AT ION PROJ EC T Royal Brompton’s Hospital School has been providing education and support for our paediatric inpatients since 1989, supported by a small team of highly experienced staff including teachers, artists, a careers advisor, therapist and ICT support. At 16, patients transition from the paediatric care on Rose Ward to adult medical care on Royal Brompton’s Foulis Ward. Sadly, the education provision does not extend to Foulis Ward patients. This is where our Charity comes in. We’re urgently raising money for two teachers to provide 20 hours of support a week each, for our inpatients aged between 16-25 during GCSEs, A Levels and also to help with careers advice that factors in any limitations due to their condition. A big thank you to the Monday Charitable Trust, who recently visited Foulis Ward. After meeting with the Hospital School team and Jack (pictured right), they generously pledged £150,000 over three years towards this new provision. We will continue to raise the remaining £34,000 through applications to charitable trusts and foundations. If you would be interested in supporting this project, please contact Zahra at z.khan@rbht.nhs.uk
@ r b h c h a r i t y / r b h c h a r i t y. o r g
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// F U N D R A I S E R S P OT L I G H T //
R ide for life B o b a n d A n n e t te h ave a lway s b e e n p a s s i o n ate a b o ut c yclin g. B ut wh e n B o b ’s s o n N i ck wa s a d m it te d to H a re f i e l d H o s p it a l in d e s p e r ate n e e d of a h e a r t t r a n s p l a nt , a p l a n n e d c yclin g ch a ll e n ge to o k o n a wh o l e n ew m e a n in g. ick, 42, has had seven heart surgeries over his lifetime, and was now in endstage heart failure. But there was to be a long wait due to a shortage of suitable donated hearts. Meanwhile, Nick’s wife Samantha and two young children were many miles away at home on the Isle of Wight.
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So, in September last year, Bob and Annette embarked on a staggering 874-mile ride from Land’s End to John O’Groats by eBike. Even at 73 and 69, Bob and Annette were never deterred, only driven by what they were fighting for - to support Nick, raise awareness of organ donation and to raise money for our
R B HC h a r it y, R oy a l B r ompt on Ho spit a l , Syd ne y St r e e t , S W 5 3 U E
// FUNDR AISER SP OTLIGHT //
Transplant Appeal. Bob and Annette kept loved ones and supporters reg ularly updated through their online blog (lejogbyebike.com), including rides through spectacular scener y and beautiful weather as well as the more challenging days, one of which saw them conquer 58.56m in just one day. On October 3, after 991 gruelling miles, 392ft of hills and and views that covered the length of mainland Britain, they completed their challenge saying, “We have passed through the most amazing and beautiful countryside that tourists never see. It has been the hardest and yet most fulfilling experience ever.” Then two weeks later, came the amazing news that Nick would finally get his
"It has been the hardest and yet most fulf illing exper ience ever " transplant after 10 long months. The operation was a success and Nick continues to do well. Bob and Annette are incredibly grateful to everyone who has supported them, Nick, and their fundraising efforts. LOOKING FOR A CHALLENGE TO RAISE MONE Y FOR OUR T WO HOSPITALS? Go to rbhcharity.org or get in touch with our fundraising team at fundraising@rbht.nhs.uk for some inspiration!
RAISED
TEAM SHANE O’NEIL
Team Shane O’Neil came together to thank staff at Harefield Hospital for caring for Dad, Grandad and Husband, Shane. Shane had been travelling to Harefield for 15 years, having had an ICD fitted following irregular heart rhythms. Sadly, during surgery to help fight an infection, Shane went into cardiogenic shock. Eight days later, with 22 family members at his side, Shane passed away.
£3,500
Shane had undertaken Harefield’s Fun Run several times himself, so it was fitting for the family to take part together in his honour, raising a spectacular £3,500.
THE WILD SISTERS
Sisters Lauren and Sammi ran the Great South Run for the 5th year in a row to mark the anniversary of brother James' death. James received two lung transplants at Harefield Hospital but sadly passed away in 2013 at the age of only 29. Each year they get together with family and friends to run the race in his memory. In 2018, they raised an amazing £1,275.
RAISED
£2,000
RAISED
£1,275
KE VIN CHILCOT T
Last year Kevin’s father had a heart attack and as a result, he witnessed first-hand the excellent care and dedication provided by everyone at Harefield. His father-in-law was also cared for by Harefield for several years but regrettably passed away last year. Kevin set himself the challenge of a lifetime, to trek up Mount Kilimanjaro. Kevin raised the flag for Harefield Hospital at the top of the mountain, whilst raising an incredible £2,000.
@ r b h c h a r i t y / r b h c h a r i t y. o r g
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// WHAT ' S ON //
W hat's on? J o in u s f o r a s p ot of go lf, fre e fa ll fro m t h e U K ’s t a ll e st s cu lptu re , o r e n j oy a f u n-f ill e d d ay wit h yo u r fa m il y a n d fr i e n d s at o u r 3 8t h a n n u a l Fu n Ru n .
SUNDAY 14 JULY 2019
SUNDAY 12 MAY 2019
L ON D ON BR I D GE S WA L K
A B SE I L T H E A RC E L OR M I T TA L OR BI T
London
Take in the views of London, whilst walking alongside family and friends. You'll cover 10 miles and cross 12 of the capital's iconic bridges!
Queen Elizabeth Olympic Park Why not set yourself a thrilling challenge this spring? Abseil 80 metres down the iconic ArcelorMittal Orbit and take in the panoramic views.
SATURDAY 3 – SUNDAY 4 AUGUST THURSDAY 20 JUNE 2019
C H A R I T Y G OL F DAY
PRU DE N T I A L R I DE L ON D ON- SU R R E Y 10 0
Denham Golf Club
London
Team up with fellow golfers for our flagship Annual Golf Day, hosted by rock legend and Charity Ambassador, Shakin’ Stevens.
Known as the world's greatest festival of cycling, there is no other closed-road event like it. Be part of this thrilling event in aid of our hospitals.
To sign up for any of our upcoming events, visit: rbhcharity.org/events, email fundraising@rbht.nhs.uk or call us on 020 7351 8613
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R B HC h a r it y, R oy a l B r ompt on Ho spit a l , Syd ne y St r e e t , S W 5 3 U E
JOIN OUR # P U R P L E H E A R TA R MY At 2019 's Royal Park s Half S unday 13 October S ign up with one of our charit y places and raise vital funds for our hospitals at rbhcharit y.org/royalpark s19
COLOUR ME IN
If you are interested in being active in the arts while in care at any of our hospitals, please contact the Arts Team for a Patient Craft Kit or a Library Membership to access online viewing content: arts@rbht.nhs.uk @rbharts or visit rbht.nhs.uk/arts