News Beat Autumn/Winter 2018

ROYAL BROMPTON & HAREFIELD HOSPITAL S CHARIT Y

N E WS BE AT AUTUMN/ WINTER 2018

Dr Chris Bowles and family at Grand Canal Challenge

JOI N OU R F IG H T AG A I N ST H E A RT A N D LU NG DI SE A SE

// W ELCO M E //

elcome to our autumn edition of News Beat. We have had a terrific summer so I extend a huge thank you to the hundreds of supporters who came to our events – some ver y energetic, like Grand Canal Challenge, and others more stately, like the Champagne Picnic.

I would particularly like to thank Baroness Boothroyd, pictured here with yours truly. She gave an amazing contribution to our oral histor y project marking the 70th anniversar y of the NHS, charting her life before the NHS through to the present day, when she paid tribute to Royal Brompton & Harefield – the treatment, care, and research programmes which make these two hospitals so special.

Several people took part in our NHS70 fundraising celebration, #Fitin15. I really enjoyed my walking, and was proud to give my £70 to the Patients’ Fund. It’s not too late to join us, the anniversar y runs for the whole year, so simply sign up on our website.

As you will see, the Charity is focussed on two pioneering campaigns this year – Royal Brompton’s ambition to transform the lives of people with cystic fibrosis whilst Harefield is supporting the heart and lung transplant programme with Organ Care Systems (page six).

We not only celebrate what has happened so far in News Beat but we look for ward. We are particularly delighted that the lovely Felicity Kendal

" We a r e pa r t icula rly del ight ed t hat t he lovely Fel icit y Kenda l w i l l be our g uest r eader at our Ca r ol Concer t" will be our g uest reader at our Carol Concert at St Luke’s this year. We also have Huw Collins, who stars in Pretty Little Liars, as a reader. Huw’s father is one of the top consultants here at Royal Brompton (page ten).

Please continue to support this Charity. We would be nowhere without you, and with you, we change lives.

Above: Gill and Baroness Betty Boothroyd

Gill Raikes, Chief Executive

E D I TO R ’ S L E T T E R It's been a real pleasure writing my first edition of News Beat but not only that – the staff, patients and supporters that I’ve met over the past few months, have been truly inspirational.

After a series of spectacular summer events, I’m looking forward to seeing our #PurpleHeartArmy come together for some festive celebrations and fundraising. Find out about our upcoming events on page ten but in the meantime, enjoy!

Rachel Cresswell, News Beat Editor

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Letter to the Editor

This was the first editio n of News Beat I've rec eived – my wife had just had a Harefield operation and I had se nt a donation to say 'thanks' for the ma rvellous service from all the staff. After seeing the great work being achieved in your articles through the fabulous fundraisers an d supporters, I've been inspired to donate again. Keep the succes s stories coming.

Tim from London

We love hearing from you.

Send your Letter to the Editor by post or email to r.cresswell@rbht.nhs.uk and we will be in touch!

R B HC h a r it y, R oy a l B r o mpt o n H o spit a l , Syd n e y S t r e e t , S W 5 3 U E

// O U R A P P E A L S //

Our appea ls The fut ur e of c yst ic f i br osi s c a r e Our ‘Back in the Driving Seat’ Cystic Fibrosis (CF) Appeal is in full swing, as we continue to work towards building a digital platform for people with CF. We are raising £500,000 to fund this groundbreaking technology, which will give people with CF greater control over their care and lives.

The Department for Cystic Fibrosis has been busy working with patients to understand what functionality they are looking for from the platform. Typically, this collaborative design process involves bringing people together for shared discussion. But due to the issue of cross-infection between people with CF, the team has been using technology to collaborate remotely.

Clinical Speciality Lead at Royal Brompton, Helen Parrot, explains, “It’s important to us to co-design and create something that our patients want to use. It’s really crucial to take the time to do this and this process will continue throughout the project.”

To help people with CF get back in the driving seat, go to rbhcharity.org/cfappeal

Jo Acharya who has been trialling the platform

# Ma nyMor eHea r t s r a i se s £ 356 , 2 0 0 At the beginning of the year, we launched an appeal to help fund innovative new equipment for the catheter laboratory – often called the ‘cath lab’, at Royal Brompton Hospital. This is where our heart patients undergo non-surgical procedures and tests, such as angiograms and angioplasties.

Thanks to your support, the Charity raised over £355,000 to make Royal Brompton’s cath lab better for the hundreds of patients who undergo life-saving treatments each year.

Thank you to everyone who supported #ManyMoreHearts.

Find out how you can support our transformative projects at rbhcharity.org

@@r b r bhhc h c ha ar irti yt y/ /r b r bhhc h c ha ar irti yt .yo. or gr g

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// W H AT ' S N E W ? //

WH AT ’ S NEW?

Fabulous fundraisers and the humbling generosity of our supporters help to ensure we meet and even exceed our goals for cutting-edge projects.

A UNION BET WEEN T W O H O S P I TA L S

CHEERS TO THE NHS

On a sunny Friday in June, over 200 supporters, patients and staff came together for our Champagne Picnic in aid of the Harefield Transplant Appeal. And this year, there was another reason to celebrate with NHS70. Deputy Mayor of Hillingdon, David Yarrow, helped us wish the NHS ‘happy birthday’ by presenting our special birthday cake, enjoyed alongside a glass of bubbly.

A total of £6,260 was raised.

Thank you to everyone who came to show their support. By attending, you've helped to support patients with heart and lung disease at our hospitals.

Runners, walkers and cyclists took to the Grand Union Canal from Royal Brompton to Harefield Hospital in July’s Grand Canal Challenge, raising over £30,000 and still counting.

Volunteers cheered participants along the 26-mile route, with great enthusiasm. Our Harefield Finishers’ Festival was the perfect way for everyone to celebrate, where a delicious hog roast, live music and a bouncy castle, awaited participants as they crossed the finish line.

DR NICHOL AS SIMMONDS JOINS OUR # P U R P L E H E A R TA R MY We're delighted that Dr Nicholas Simmonds, consultant respiratory physician at Royal Brompton has joined our #PurpleHeartArmy, taking part in the Royal Parks Half Marathon in October. Dr Simmonds will be raising money for our ‘Back in the Driving Seat’ Cystic Fibrosis Appeal: “Running is something that I enjoy so I decided to do the Royal Parks in aid of this appeal which supports the development of the CF Future Care platform – a fantastic opportunity for our patients. By running, it’s my way of doing just that little bit more for our appeal.”

PA R T N E R S H I P T O I M P R OV E PAT I E N T C A R E In November 2017, Royal Brompton & Harefield NHS Foundation Trust announced plans to explore a future partnership with King’s Health Partners (KHP) for paediatric and adult clinical services, education and research. KHP comprises Guy’s and St Thomas’ NHS FT (GSTT), King’s College Hospital (KCH), South London and Maudsley NHS FT (SLaM), and King’s College London (KCL).

The partners have a united vision to revolutionise heart and lung treatment and research in London, providing the best possible patient experience. Central to the vision is

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the development of new purpose-built clinical academic facilities on the St Thomas’ Hospital and Evelina London Children’s Hospital site.

The Boards of the three foundation trusts, and King’s College London, recently approved a feasibility study which explored the potential benefits of the partnership, and the likely costs. The proposals will now be taken forward to the next stage and the partners are working together to compile a strategic case which will set out further details of how services could be delivered to patients and their families in the future.

R B HC h a r it y, R oy a l B r o mpt o n H o spit a l , Syd n e y S t r e e t , S W 5 3 U E

// W H AT ’ S N E W ? //

WH AT ’ S NEW? Pa t ie n t s’ F und

We want to share some of the projects that you have made possible by donating to our Patients’ Fund.

Your support enables us to provide equipment and facilities that aren’t funded by the NHS and make patient life that little bit more like normal life.

EXERCISE BIKES

At our hospitals, exercise is used to improve the effectiveness of physiotherapy interventions.

Fitting in daily exercise can be challenging at the best of times but it can be even more difficult during hospital admissions.

Thanks to the Patients’ Fund, children on Rose Ward now have access to two brand new static exercise bikes meaning patients can exercise in the comfort of their rooms.

iPA D S

Children with chronic lung disease often have nebulised medications as part of their treatment. But taking a nebuliser for the first time, especially for small children, can be a scary experience.

Having the iPad loaded with age-appropriate TV programmes has made a huge difference in helping with distraction during nebuliser trials, and ensuring they are not a negative experience.

Physiotherapist at Royal Brompton, Nicola Collins, added, "The iPad has also proved hugely useful during inpatient exercise sessions – exercise apps and videos can be loaded quickly and easily and provide more variation for patients.”

E M I LY P I N K , 15

Emily uses the exercise bikes every day during her stays at Royal Brompton, for at least 30 minutes a day. For Emily, it's an opportunity to continue her regular exercise away from home and keep moving.

“Being able to use the exercise bikes makes me feel more productive during my stays. It also makes me feel good – I’m grateful to have them here!”

REFURBISHED FURNITURE F O R T H E PA L S R O O M

The previous furniture in the PALS Family Room at Royal Brompton was bought in 2007 as part of a King’s Fund project to improve surroundings for those who are bereaved.

But in recent years, the sofas had become worn and shabby.

PALS Manager, Eve Cartwright said, “The furniture made the room looked uncared for – not the welcoming atmosphere needed to support patients and their families.

Thanks to funding from the Charity, the Family Rooms at both Harefield and Brompton have been restored.”

Our Charity gives £100,000 each year to the Patients' Fund. Please help us to grow this fund and make these life-changing projects possible. Whether you give monthly or as a one-off, your small change makes a big change to the patients at our hospitals. Go to rbhcharity.org/the-patients-fund

@ 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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// O R G A N C A R E S Y S T E M //

Beating hear t technolog y – how does it work?

With the help of the O rgan C are System (O CS), the pione ering transplant team at Haref ield Hospital continue to p er form even more hear t transplants , saving the lives of many.

The OCS uses state-of-the-art technology to keep donor hearts beating outside of the human body. Donated organs can come from further away, arrive in better condition and give staff more time to prepare for surgery.

So, what happens once a donated heart becomes available?

INCOMING CALL

The transplant team at Harefield Hospital receives a call from one of the recipient transplant co-ordinators to say that an organ donor has sadly passed away and is registered to donate their heart and lungs which have been allocated to a patient at Harefield.

The on-call retrieval team, consisting of surgeons, a perfusionist, a scrub nurse and an operating department practitioner, is given one hour before they must be ready to leave for the

It’s been almost six years since Will Pope had his heart transplant, aged 17.

“I'm feeling great - I go to the gym regularly, and try to stay active in general. It's very important to me to make the most of this second chance I've been given. I'm aware of how lucky I am. Organ donation is the most immeasurably generous and selfless action

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The Organ Care System

donor hospital, where they will travel with the OCS. This can be at any time of day or night!

CROSS-COORDINATION

All the retrieval teams, from different hospitals, arrive at the donor site.

Once all teams are present, a handover takes place, led by a specialist nurse in organ donation.

The preparation can take from two to four hours. The removal itself takes approximately 20 minutes.

anyone can take, and it's a great feeling to know that you could be saving a life.

I was bedbound for 200 days, and for much of that, I was unable to move, speak, eat, drink or even breathe for myself.

Not only has my donor saved my life, and many others, but they spared my family the grief of losing a son, a brother, a grandson.”

R B HC h a r it y, R oy a l B r o mpt o n H o spit a l , Syd n e y S t r e e t , S W 5 3 U E

// O R G A N C A R E S Y S T E M //

Harefield’s transplant surgeons connect the donor heart to the OCS, which has been set up by a specialist perfusionist using donated blood. The heart is then given a shock of electricity to restart it.

RETURN JOURNEY

Once the heart is in the OCS, it is closely monitored for the duration of the return journey, remaining in a warm and beating state until ready to be disconnected for transplantation at Harefield. The OCS delivers oxygen and warm blood to keep the heart alive. This means the transplant team can travel further to collect the donated organs, compared to when using the traditional ice storage method.

Specialt y Doctor in Cardiothoracic Surger y at Harefield, Diana Garcia Saez, explains, “ T he OCS allows for hear ts to be kept in better condition for longer, so we have more time to prepare for surger y.”

LIFE-SAVING SURGERY

It can take 30 minutes to five hours to prepare the transplant patient for surgery, depending on how many previous surgeries they have had. This all happens while the retrieval team is at the donor site or when they are on their way back – depending on the length of the return journey. When back at Harefield, the OCS remains in theatre, until the transplant surgeon is ready for the heart to be transplanted.

NEW LIFE

During the surger y the recipient is connected to a bypass machine, run by a perfusionist, which takes over the function of the heart until it has fully stabilised in the recipient.

The OCS is a fully portable system which contains the single-use Heart Perfusion Module.

It is this part that the Harefield Transplant Appeal will fund. But we need your help.

To learn more about this appeal, go to rbhcharity.org/ transplant-appeal

Q&A with a perfusionist Louise Moss is a perfusionist at Harefield Hospital, a role that is vital to the OCS. With approximately only 400 perfusionists working in the UK, Louise tells us about her role and why working with the OCS is so special.

Louise, tell us about your role

Perfusionists work in cardiac surgery. It is our role to operate a machine called a heart/ lung bypass machine. This machine takes over the function of the heart and lungs while a surgeon operates on the heart – essentially, we keep all the other organs alive while the heart is not able to pump blood. At Harefield we do other specialist roles such as running the OCS, to keep the heart alive during transport.

What makes the OCS so special?

The Transplant Team at Harefield is multidisciplinary - it’s fascinating to see these different teams and skills come together when using the OCS, to help as many patients as possible.

We can now travel further away for donated hearts and still ensure they arrive in the best possible condition. Not only that, we can assess hearts that may have been declined using the traditional “on ice” method, as the OCS keeps the heart in a beating state. Because of this, we can give more people the opportunity to get their heart transplant.

What do you love about working at Harefield?

We’re a very close-knit team at Harefield, across all departments and specialities; a sense of community that extends to staff/patient relationships. So much teamwork is involved in everything that we do, providing patients with exceptional care and treatment.

We also get to utilise pioneering pieces of equipment like the OCS - it’s a very unique centre in this sense and I love being a part of it.

@ 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 //

Night riders Wh e n J ulian S mith ’s n e p h ew an d family fr ie n d we re b oth treate d at Royal B rompton H osp ital , h e fe lt com p e lle d to give som e thin g b a ck . n 2016, Julian Smith was getting ready for the arrival of his nephew, Ioan.

However shortly after he was born, Julian and his family discovered that his nephew had a hole in the heart.

After a few months the hole closed but Ioan was left with a problem with his aortal valve. After key

hole surgery didn’t produce the desired outcomes, at ten months old, Ioan had open heart surgery.

Julian, his family and doctors were surprised at how well Ioan bounced back and despite still being under treatment for abnormal blood presure, he is running around and enjoying life. “It’s amazing that someone can do so much and give him a better quality of life,” Julian said.

Then in April this year, Julian’s son’s best friend and close family friend David, collapsed. He had a blood clot in a main arter y that burst, causing 90% heart failure. A team from Royal Brompton were sent to David’s local hospital to operate, before f lying him back to London where he would be in a coma for four to five weeks.

David has recently been moved to a hospital closer to home and despite some initial setbacks, he has made tremendous progress.

Taken aback by how much David and his nephew had been through, Julian decided to embark on a cycling challenge with his friend Joe, in June 2018, riding 100 miles from Cardiff to Swansea overnight, then back home to Merthyr. “W hen David was back in Royal Brompton, I decided that I had to do something. My wife and I couldn’t understand how it must feel for David’s parents, so I set myself a challenge.”

In total, Julian and Joe rode a staggering 107 miles. “We started in Cardiff at 10pm on Saturday and arrived at Swansea Pier at 5.50am, arriving home at 9.45am ver y tired, but it was worthwhile.”

They raised over £900 for our Charity which went directly towards supporting patients with heart and lung conditions, like Ioan and David.

"My w ife and I couldn't underst and how it must feel for Dav id's parent s, so I set myself a challenge" Julian and friend Joe

There are a range of ways you can fundraise for us, from skydives to half marathons. Or, why not embark on your own challenge like Julian?

Go to rbhcharity.org

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Roya l Brompton & Ha ref ield Hospit a ls Cha r it y

RAISED OVER

£1,600 K YM H O U S D E N Kym’s sister, Kelly and her baby RAISED daughter Lottie, £2,700 came to Royal Brompton Hospital unexpectedly in December 2017, after Lottie suddenly became unresponsive at home. She was later diagnosed with transposition of the great arteries (TGA). Lottie remained in hospital for four months – Kelly and her partner only left her side to go to sleep in nearby accommodation.

To show her family’s gratitude, Kym bravely committed to doing a skydive to raise money for our hospitals, raising an impressive £2,700.

Kelly said, “Throughout our stay the staff were magical in not only helping Lottie but also in helping us. We are grateful to everyone, from the staff on the wards, to the Charity and even the lovely staff in the coffee shop for helping keep our spirits up.”

RAISED

£200

L O N G FA M I LY B B Q In July, the Long Family held their fourth Charity BBQ to raise money for Harefield Hospital and celebrate the fourth anniversary of Dave Long’s left ventricular assist device (LVAD) surgery. Dave is now

SARAH MCMANUS A N D DAU G H T E R S Sarah McManus’s three young daughters held a yard sale in aid of Royal Brompton Hospital which raised £200. In November 2017, the girls' dad was rushed to Royal Brompton to undergo over ten hours of emergency heart surgery for an aortic dissection.

After six long weeks in hospital, he finally came home and has been going from strength to strength ever since. The girls wanted to say a big thank you to the hospital and its staff for saving their dad - never too young to start fundraising!

awaiting a heart transplant.

With the help of family and friends, they raised over £1,600 by holding a raffle, tombola and ‘take your pick ’ game over the course of the day. In total, their last four BBQs have raised nearly £7,000.

HANNAH TRUMPER Hannah’s father Jeff, received the gift of a heart transplant after contracting a virus that attacked his heart and led to heart failure.

Following further heart operations, including having a pacemaker fitted, Jeff now has twice-yearly appointments which he attends with Hannah.

To say thank you RAISED to the hospital that saved her father’s life, Hannah held a fundraiser at the salon where she works, raising £600. “I wanted to raise as much as possible as you never know when you might need life-saving treatment.”

£600

CO R P O R AT E S U P P O R T

We want to give thanks and celebrate our corporate partners who have contributed to all the incredible things that we have achieved this year.

A special thanks to Sophie Ford of Scrumptious Catering, who provided the delicious food at our Champagne Picnic. Sophie was diagnosed with cystic fibrosis aged four and two years ago, had a double lung transplant at Harefield Hospital. Supporting the event was Sophie’s way of giving back to the Transplant Team who changed her life.

We’d also like to thank Abbott Laboratories Limited, Barclays, Barnett Waddingham LLP, Bircham Dyson Bell, Boehringer Ingelheim Ltd, Boston Scientific, BP Oil UK LTD, Keir Construction, KX, Maquet Ltd. UK & Ireland, Martin Baker, Motorline, Re:Cognition Health, Robert Cooper, Roxhill, Savills, Southern Cars LTD, The Ivy Chelsea Garden, Three Choirs Vineyards and Waitrose for their generous support.

@ 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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// W H AT ' S O N ? //

W hat's on?

Race through L ondon’s Royal Par k s or laugh alongside Clive A nder son at the G reat B rompton Q uiz. J oin us at one of our up coming event s .

SUNDAY 14 OCTOBER

WEDNESDAY 14 NOVEMBER

ROYA L PA R K S H A L F M A R AT HON

T H E GR E AT BROM P TON QU I Z

Hyde Park, London

Royal Brompton Hospital

This stunning 13.1-mile route journeys through London’s iconic Royal Parks – Hyde Park, Green Park, St James’ Park and Kensington Gardens.

Paediatric Respiratory Consultant, Professor Claire Hogg and six colleagues (pictured right) will be taking part in this year’s event. Speaking of their fundraising challenge, Claire said, “It’s for a good cause and a fantastic way to build team spirit whilst having fun with the wider disciplinary team.”

Presenter Clive Anderson will once again host our Annual Charity Quiz, with all funds raised going towards our Cystic Fibrosis Appeal. Delight in an evening of humour, music and of course some friendly competition, joined by staff, supporters and even a few famous faces.

13 DECEMBER - HAREFIELD 18 D E C E M B E R - R OYA L B R O M P TO N

C A ROLS BY C A NDLELIGHT SUNDAY 2 DECEMBER

SA N TA DA SH Ruislip Lido Santa suits at the ready for our very festive fundraiser!

Beat the winter chill by joining 100s of Santas for a 1.8km course around Ruislip Lido to help to raise money for our two hospitals. It’s a fun-filled event for participants of all abilities, so we hope to see you there.

St Mary’s Church and St Luke's Church Get into the festive spirit with friends and family at our special carol concerts, taking place in two stunning churches – St Mary's in Harefield and St Luke's in Chelsea. And, we’re excited to share that Huw Collins who stars in Pretty Little Liars and Felicity Kendal, will be reading at our Royal Brompton Carols by Candlelight! We invite you to come and listen to a selection of beautiful music, and enjoy a mince pie and glass of mulled wine. What better way to wind down for Christmas?

To sign up for any of our upcoming events, please 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 o mpt o n H o spit a l , Syd n e y S t r e e t , S W 5 3 U E

// 1 0 0 H E A R T S //

Phil McIntyre presents…

100 HEARTS

A NIGHT OF COMEDY AT THE LONDON PALLADIUM 100 Hearts is back for the third and final time on Wednesday 13 February 2019 at The London Palladium

TICK

ETS F

£35

ROM

James Acaster

Rachel Parris

Rob Br ydon

Clive Anderson will once again host a stellar line-up of comedians and musicians, including Rob Brydon, James Acaster, Sindhu Vee, Rachel Parris, Omid Djalili and Harry Enfield with more still to be announced!

The iconic London Palladium has seen performances from some of the world’s biggest stars and is renowned for being home to The Royal Variety Performance and Live at The London Palladium. In the heart of London’s West End, this spectacular setting promises to deliver a very special night of comedy.

Tickets start from only £35! Tickets will be available soon. Keep an eye on our website and social media channels.

The 100 Hearts Night of Comedy is in aid of Royal Brompton & Harefield Hospitals Charity. By attending, you are supporting our fight against heart and lung disease.

Visit 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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Our Cha r it y in num ber s:

Grace Holliday supports rb&hArts as an artist at their Crafternoons. Delivered through Royal Brompton & Harefield Hospitals Charity, rb&hArts raises additional funds to deliver a long-term programme that increases levels of wellbeing amongst staff and patients.

Go to rbhcharity.org/rbandharts Registered Charity Number: 1053584