Happy 10th birthday Evelina London!Here’s what you’ve helped us achieve

We are

Dr Sara Hanna, Medical Director, Evelina London Many of you will remember when, in October 2005, we moved to a purpose-built facility on the St Thomas’ Hospital site.Thanks to supporters like you we were able to create the first new children’s hospital to be built in London for more than 100 years, and to fully equip it with cutting-edge medical equipment. Designed with the help of the children, families and staff who would be using it, the result was a children’s hospital that doesn’t feel like a hospital.

Since then, more than half a million children and young people have visited Evelina London for treatment.Looking forwards, we aspire to build on our role as the hub for specialist child health services across south London, the south east region and beyond. We work with our local community and

regional hospital partners, to deliver life-enhancing care for children, young adults, their families and carers in the best possible environment, all of the time.

Achieving our vision represents a journey of ongoing development of children’s services at Evelina London, building on our many clinical achievements, investments and milestones to date. Everyone at Evelina London is extremely grateful for all the improvements we have been able to make thanks to our supporters. Without people like you, we would not be able to go above and beyond what the NHS can provide and we wouldn’t be able to deliver care in world-class facilities.

Thank you

What makes

specıal?Evelina Londonso

Evelina London is a specialist referral centre for rare childhood disorders, for patients from across the UK and the south east region. It’s also a local community hospital, serving the children of south London. Its home on the St Thomas’ Hospital site means that patients can be cared for from before they are born, through childhood and adolescence, and into adulthood.We have extensive international links,

collaborating with teams across the globe through research and teaching programmes.And we have an amazing hospital building, created for and by children. But what makes Evelina London really special is the people. The experts, the carers, the children, the supporters.Read on for some of their stories, and find out more about Evelina London and how you can show your support at www.supportevelina.org.uk

2

Donate to Evelina London supportevelina.org.uk/donate

We make sure we provide the comforts needed – by all our young patients, but also their siblings and families

A hospitalfeel like

that doesn’ta hospital

Arthur’s story In 2012, three-month-old Arthur was treated at

Evelina London for a coronary heart defect.

Arthur was taken ill during a family holiday and

flown back to the UK to be rushed straight to Evelina

London for emergency surgery. He became so ill that

parents Mark and Cat were told he might not survive.

After two life-saving heart operations, Arthur is now

a fit and healthy, high energy three-year-old.

Mark and Cat were not only impressed by the

care Arthur received but also how their needs as a

family were met. ‘It was our daughter Ava’s third

birthday on the day of Arthur’s second operation and

we didn’t even see her, but the play specialist and

everybody really helped to not make it scary for her

and to understand what was going on,’ says Mark.

‘The hospital is built so much around patients and

their families – you get that as soon as you walk in.

I’ve never seen or heard of that in other hospitals.’

How donations make a differenceCathy Gill is a play specialist and has worked

at Evelina London for over 25 years.

‘Donations provide play and activities for

all the children staying in or visiting hospital.

This extra funding especially helps with toys

for children with special needs, which are

absolutely essential in providing therapeutic

play and helping with their development.

‘We are able to provide activities for

teenagers, arts and crafts in school holidays as

well as essential toys and equipment to help

prepare children for procedures.’

Staff also rely on people’s generosity to help

fund the annual Transplant Games – a hugely

successful sporting event for past and present

patients – as well as to buy party food, gifts,

games and prizes for celebrating birthdays and

Christmas festivities at the hospital.

This extra money makes a huge difference

to teenagers too. Staff take them out in small

groups – to restaurants, to the Sea Life London

Aquarium and the London Eye, so they can

support each other in relaxed environments.’

17 feet – the height of our

helter skelter!

Did you know?Evelina London was

the first children’s

hospital to allow a parent

to join their child in

the ambulance.

54

Challenge yourself for Evelina London supportevelina.org.uk/challenge

We have an international reputation for treating

heart problems in children. We care for children

from before they are born, throughout childhood

and into adulthood

Fixingheartstiny

Hannah’s story20-year-old Hannah was born three months

prematurely with a rare heart disease called

Complicated Ebstein’s Anomaly. She has been

treated at Evelina London since she was born and

has now moved on to adult services at St Thomas’.

‘I’ve had various procedures, including open

heart surgery and spent a lot of time in and out of

hospital,’ Hannah says. ‘Sometimes it’s frustrating

or annoying but I know that I’m in good hands and

I’m not the only one!

‘This disease has made me stronger and shown

me life in a very different light. I am not my condition,

but my condition has definitely made me who I am.

‘I love Evelina London – the place, the people,

including the other patients I’ve met there and the

service it offers. Let’s face it, if it wasn’t for them I

wouldn’t be here today!’

Last year, Hannah and two of her best friends

(and fellow heart patients) Katie and Cissy shaved

their heads to raise thousands of pounds for Evelina

London. You can follow Hannah’s journey on

Facebook at Hannah’s Heart Beat.

440 heart operations

and 220 interventions are performed

every year

How donations make a difference

Thanks to the generosity of donors, diagnosing babies with congenital heart disease has dramatically improved.

Congenital heart disease is a term used for a range of defects that affect the normal workings of a heart. It affects up to nine in every 1,000 babies born in the UK.

‘In most cases if we were to do nothing, the child would not have the chance to have a normal life,’ explains Dr Owen Miller, Paediatric Cardiologist at Evelina London.

‘We do fetal screening to look for abnormalities in the unborn fetus – that is something that was pioneered here about 30 years ago. We’re world leaders in fetal diagnosis.

‘It’s a matter of rearranging the heart by corrective surgery to make it “more normal” and, if that’s not possible, to make the circulation cope better with the abnormality.’

‘We’re very proud to support Evelina London’Dedicated supporters Surinder and Sunita Arora chose Evelina London to be co-beneficiary of their 2014 charity ball from which Evelina London received £328,000. This generous gift will help to expand the imaging department and will be vital to meet the growing demand on the service. It is essential that facilities keep pace with the new clinical practices being pioneered, as well as ensuring treatment can begin earlier so patients get better sooner.

Imaging technology is a type of scanning which enables complex medical conditions such as heart defects to be diagnosed quickly and accurately.

Evelina London’s imaging department has a global reputation for leading and pioneering imaging techniques in children.

‘We’re delighted that the money raised from the ball will go towards expanding Evelina London’s imaging department. We have seen first-hand what a special hospital it is and we’re very proud to support it,’ says Mr Arora.

76

Have fun for Evelina London supportevelina.org.uk/fun

As soon as babies are born at St Thomas’, they receive the very best care

Supporting oursmallestpatıentsManeet’s story

Maneet Virdi has just turned two. It has not

been an easy journey for him and his family

though, who have fought to overcome

many difficulties.

Maneet was born three months

prematurely, weighing just 1lb 1oz.

He was transferred to the Neonatal

Intensive Care Unit (NICU) at St

Thomas’, where the next day he

suffered a significant bleed to the

brain, the first of many life-

threatening challenges.

A number of other serious

complications followed, including

emergency surgery to treat bowel

problems common in premature babies.

His parents Randeep and Sachpreet spent

the next eight months at their son’s bedside

in NICU, an unusually long time for a baby to

be in the unit – so much so that staff nicknamed

Maneet the ‘geriatric’.

‘They cared for him like he was their own,’

says Randeep. ‘They became second family;

their generosity and their care towards him was

phenomenal.’

Thanks to the incredible care he received in NICU,

Maneet was discharged exactly eight months from

the day he was born. ‘We’re never going to let him

forget where he’s come from; if it wasn’t for the NICU

staff he wouldn’t be here today,’ says Randeep.

900 babies are

cared for in our neonatal unit

every year

How donations make a differenceThanks to donors, we can buy special equipment that helps tiny babies like Maneet recover as comfortably and quickly as possible.

Maneet spent the first four months of his life in an incubator, his tiny body kept snug and secure by special baby nests. Both pieces of equipment were vital to his recovery, and both are in the unit thanks to donations.

It is undeniably difficult for parents when they have to leave their babies overnight, but special

extras, like hand-shaped pillows called Zaky hands, can make the ordeal easier.

‘We were told to rest our hands on his head or cup his feet to give him comfort,’ remembers Randeep. ‘So when we weren’t there, the Zaky hand did it for us. Such a simple thing, but it had such a big impact. It was good for us knowing he had that kind of comfort and that he was snug with a hand over him when we were going home.’

Did you know?All of our 120 inpatient ward beds have a pull-down bed next to them so that parents can spend the night

with their child

8 9

Each year Evelina London sees over 6,000 children desperately in

need of specialist care. This number is growing year-on-year

childrenCaring for our

critically ill

Leave a gift in your will to Evelina London supportevelina.org.uk/legacy

George’s story George was born with problems with his heart, brain and breathing, so had a lot of specialist treatment. He spent his first five months in hospital, including four in the Paediatric Intensive Care Unit (PICU), and had open heart surgery aged two weeks.

‘He was on a ventilator for a very long time and everyone thought he wouldn't make it,’ says mum Deborah. ‘It was a very emotional and challenging time watching, praying and waiting for a change, but it came and George took his first independent breaths.’

As George’s first birthday approached, Deborah decided to hold a fundraising event at the pool where George had just started baby swim classes.

‘We marched, bobbed and swam our way up and down the pool to “The Grand Old Duke of York”,’

says Deborah, who set up an online fundraising page to raise money.

‘Without the support, dedication and skills of the team, George wouldn’t be

here today,’ Deborah says. ‘The staff took care of me and my family too. I felt compelled to give back.’

Did you know?The diaries we give to

parents, detailing their

babies’ condition and

progress, are made

possible thanks to

donations.

How donations make a differenceFiona Lynch has worked in PICU for 20 years.

‘There is no doubt in my mind that children get better faster with lots of extra care and love. All the staff here want to give children

even better treatment, to make them feel more comfortable, more loved, and keep parents more informed about what happens throughout the day and night.

‘It’s only with extra donations from people like

you that we can make Evelina London so special. For example, donations helped to make our breastfeeding room more comfortable and bought extra pumps – so more babies and mums can benefit from precious bonding time together. And we bought new machines to measure children’s blood pressures even more accurately.

‘Donations also help us buy cuddly toys, blankets and games for the children we treat. These are just some of the ways you can enable us to go above and beyond for our children and their families.’

Funding life-saving care Staff at Southwark News and Lambeth Weekender have raised nearly £100,000 since 2013, taking part in events including swimming the Channel, climbing the Three Peaks, the Hellespont Swim and a Full Monty show. They also gave out collection tins to local businesses and spread the word every week in the newspaper – leading to many new supporters for Evelina London. These included the previous Mayor of Southwark, who chose the hospital as his Mayor’s Charity for 2013-14.

Managing Director Chris Mullany has also just completed climbing Mount Kilimanjaro and cycling from London to Paris to bring the appeal to within touching distance of the £100,000 target. The money

raised will fund vital new equipment for the neonatal unit to treat newborn babies, as well as contributing £14,000 to the Evelina Hospital School.‘Everyone we speak to only has good things to say about the help they’ve received from Evelina London, which is often life-changing, or even life-saving,’ says Chris. ‘It was lovely to see such a cross-section of the community responding to our appeal. I hope and believe that many will carry on working to raise money for Evelina London as the needs of the hospital are continuous.’

Thank you to all of the staff, readers, suppliers and members of the community who contributed to making the Southwark News Appeal a success.

1,225children

are cared for in PICU

every year

1110

Make a regular gift to Evelina London supportevelina.org.uk/gift

Our kidney unit is one the UK’s largest – we perform almost a third of all

children’s kidney transplants in the UK

transplantProviding an excellent

1312

serviceHow donations make a differenceThanks to generous donations, children as young

as two who have had a kidney transplant have

been given the opportunity to compete in the

annual British Transplant Games.

The ‘Evelina VIPs’ team was set up by staff with

the aim of encouraging patients to reach their full

potential, and also to highlight the continued need

for organ donation.

Children and teenagers compete in a number of

different sports including running, swimming, squash

and archery. As it costs £900 per person on average

to take part in the Games, donations are vital for

removing any additional financial burden for families.

Spending time with other families and staff in

an environment outside of the hospital provides

children, parents and families with much-needed

support, friendship and an opportunity to relax.

Did you know?Our children’s kidney

service is the only

specialist referral unit in

south east England.

Nabeel’s storyBorn with chronically damaged kidneys,

13-year-old Nabeel spent two years waiting

for a suitable donor.

Thanks to a revolutionary treatment at Evelina

London, Nabeel benefited from a pioneering

procedure that essentially ‘washes’ the blood,

meaning he could receive an organ from an

incompatible donor – his mum.

The team at Evelina London was the first in

Europe to successfully complete the breakthrough

operation. Nabeel is now living life to the full,

playing lots of table tennis and swimming. ‘He’s

been such a brave boy after all that he’s gone

through,’ says his mum. ‘I would have done

anything to help him. I was glad when they said

I was the perfect “mismatch” for Nabeel.’

‘I feel well and have lots of energy,’ says

Nabeel. ‘The kidney donated by my mum is the

most important gift I could ever receive.’

20kidney transplants

are performed on children every year.

Creating a new space for our heart patientsAs we’re seeing a growing number of children who need specialist heart surgery and interventions, there is increased pressure on our inpatient facilities.

Thanks to a transformational gift from the Khoo Teck Puat UK Foundation, a brand new 18-bed cardiac ward is due to be built on the sixth floor of Evelina London to improve the hospital experience for our most critically ill patients.

Our cardiac department has an international reputation as a centre of excellence, treating children with the most complex heart conditions.

Our patients require frequent visits to the hospital

for ongoing care and monitoring which is why this state-of-the-art facility is so vital and needs to be designed around their needs.

The new ward will have more space for patients and families to have privacy as well as allowing parents to sleep comfortably by their child’s bedside. To encourage children to interact with other patients and our team of play specialists, there will also be a dedicated play area.

There will be a family room for parents to take a break from the ward environment, an interview room for sensitive conversations with doctors and a dedicated learning space for staff.

Bake for Evelina London supportevelina.org.uk/bake

How our experts are world-leaders in diagnosing and preventing devastating illnesses

Detecting genetic conditionsJacob’s story

Jacob was just nine-days-old when he was

diagnosed with a rare metabolic condition.

‘These ordinary people really are doing

extraordinary jobs,’ says mum Amy.

‘They were amazing. They reassured,

comforted, listened and answered our

scrambled questions.’

‘Here we were, thrown into this scary

world that had been so alien only a few

hours before, yet we knew then that the

care we would receive was world-class.’

To give back to the hospital, Jacob’s

dad Phil raised vital funds by taking part in

a sponsored abseil.

‘Fast forward nearly seven years and we

have a healthy, happy, superhero-loving noisy

boy who is no different to any other seven-year-

old,’ says Amy. ‘And this is all thanks to these

wonderful people who continue to care for Jacob on

a weekly basis. They truly are our heroes.’

Putting Evelina London on the world mapInternational businessman George Koukis has

donated £1.875m to establish a new Paediatric

Rheumatology Unit at Evelina London. Mr Koukis

has a personal connection with the hospital, as

his daughter Joanne (pictured with her father) was

treated for arthritis at St Thomas’ for many years.

As well as funding a consultant in paediatric

rheumatology, the gift ensures that patients and

their families can benefit from a physiotherapist,

psychologist, clinical nurse specialist, occupational

therapist and secretary in the unit, offering the best

possible multi-disciplinary care.

‘In nine months we have achieved what would

otherwise have taken five or six years,’ says Dr Nick

Wilkinson, Consultant Paediatric Rheumatologist.

‘We have received hundreds of new referrals from

across south London, Kent, Surrey and Sussex and

provided the very latest treatments for many of these.’

Mr Koukis adds: ‘It’s not the physical assets or

machinery that make an organisation or hospital,

it’s the combined values of our ideas, dreams,

aspirations and passion that make it worthwhile.

‘Something incredible will happen here and this

service is putting Evelina London on the world map.

They’re doing a fantastic job.’

How donations make a differenceEvery year 600 babies in the UK will be born with an inherited metabolic disease. Such diseases can lead to organ damage and disabilities.

Evelina London has led the way in developing technology to screen babies at birth using tandem mass spectrometers. Donations have funded two of these specialist machines, allowing experts to accurately measure specific disorders in newborns. Because of this work, each baby born in the UK is screened so that treatment, if needed, can begin immediately.

As well as metabolic diseases, this equipment can detect neurological, kidney, liver, heart and blood disorders. This significantly increases the chances of survival and normal childhood growth and development. With 40% of newborn baby deaths caused by genetic disorders, this machine is essential for saving lives.

‘This machine has great potential to help our younger patients enjoy longer and healthier lives,’ says Dr Grenville Fox, Consultant neonatologist at Evelina London.

In 2004, a national trial for newborn screening for MCADD was launched at Evelina London. MCADD is a rare genetic condition, which can be life threatening if left undetected. By 2009 all newborn babies across the country were being screened for this condition, saving many children’s lives.

400 children took

part in clinical trials last year to help develop new treatments

14 15

Volunteer for Evelina London supportevelina.org.uk/volunteer

Our children’s neurology service is the biggest in Europe, caring for children

with conditions affecting the brain, spinal cord and nervous system

Diagnosingdifficult diseases

17

Left to right: Phineas in hospital; Phineas aged 5;

Nursing Assistant Gill Swann pictured in Phineas’ Friends.

Annabelle’s story In December 2012, four-year-old Annabelle was

transferred from her local hospital to Evelina

London with an illness which appeared to be

meningitis, but she didn’t respond to treatment.

After extensive tests and an MRI brain scan,

a diagnosis came – ADEM, a very rare form of

Encephalitis, a disease in which the brain and

spine are inflamed. It affects only four in a

million people.

‘We’d never heard of it,’ mum Charmaine

recalls. ‘And as the doctors gently sat us down and

explained more to us, we sobbed and prayed.’

After a few weeks, Annabelle was taken off

life support, but had to learn how to walk, talk,

sit and even swallow again. After three months

in hospital, Annabelle finally went home, starting

school just six months later. She has regular check-

ups and still suffers from painful legs, difficulty

swallowing and poor eyesight. But Charmaine

remains positive.

‘It’s going to be a very long recovery,’ she says.

‘There are still things that cannot be explained

about her illness. But we have been told that there

is an 85% chance she will make a full recovery.

‘We are so grateful to Evelina London for the

care and treatment Annabelle received. We want to

give the biggest thank you to all the staff who were

there in the right place at the right time waiting to

give our daughter the best care on that fateful day.’

Phineas’ story In May 2010, three-week-old Phineas suddenly developed a fever and became lethargic. He was transferred from his local hospital to Evelina London where doctors battled to first diagnose and then treat his condition.

‘One of the doctors told us that if we hadn’t taken him in to hospital, he probably would have died,’ recalls dad Michael.After numerous tests, chest X-rays and lumbar punctures, he was found to have a common but infrequently diagnosed virus called Parechovirus, which had overwhelmed Phineas’ immune system.Michael says: ‘A team of doctors came to us following the diagnosis to let us know that he was going to pull through. We were overwhelmed with relief.’

One week later, Phineas was back home, and Michael, a professional photographer, was keen to find a way to thank Evelina London and recognise

all the people who had saved Phineas’ life.He set out to photograph all the staff who had been involved in Phineas’ care, during his period in hospital, eventually managing to make portraits of 63 of them. The resulting book, Phineas’ Friends, was published in 2011 with all proceeds going to Evelina London.

‘I can never forget the people who saved my son,’ Michael says. ‘And while the book will always be there for Phineas as he grows up, it also serves to remind us all of the highly skilled and dedicated teams of clinicians, scientists and technicians that work around the clock for all the children who come through Evelina London’s doors.’You can still buy the book – go to bluefilter.co.uk/phineasfriends for more information.

Did you know?We are home to the Centre

for the Developing Brain,

which does pioneering

research to understand

brain development in

newborn babies

24,000visits are made to our children’s A&E department

each year

16

Donate to Evelina London www.supportevelina.org.uk/donate

The Evelina Hospital for Sick Children, founded by Baron Ferdinand de Rothschild in memory of his wife Evelina, first opened its doors in 1869, moving into Guy’s Hospital in 1976. Since our new hospital opened on the St Thomas’ site in 2005, we have continued to lead the way in child health.

2009 We establish the UK’s first Hybrid Operating Programme to treat critically ill babies born with a severe heart defect known as Hypoplastic Left Heart Syndrome, dramatically improving outcomes for this vulnerable patient group.

2011 An Evelina London patient receives the first blood group-incompatible kidney transplant.

2013 We recruit more children on to cutting-edge clinical research studies than any other hospital in London.

2014 Evelina London Newborn Imaging Centre and the Centre for the Developing Brain open in partnership with King’s College London. The Centre carries out internationally groundbreaking research for newborn babies, searching for ways to reduce brain damage in premature and term babies.

beyondin south London andA history of treating

sick children How to support

Evelina London

Organise a fundraising event

Shave your head, hold a collection at church, fundraise at your school or have a dress down day in the workplace.

Make a donation

Get bakingHold a bake sale at work, a pie and mash evening with

friends or your very own Great British Bake Off!

Take on a challenge

Run, cycle, abseil, skydive or get muddy – we have places in

a full line-up of events. Or choose your own event.

Contact us for more information• Call 020 7848 4701 • Email info@supportevelina.org.uk• Visit www.supportevelina.org.uk

/SupportEvelina @SupportEvelina

Here’s how your support could make a difference£10 could buy a child new toys to make their stay in hospital a little less daunting.

£20 could go towards a new resuscitation system, meaning doctors will have the most up-to-date equipment when treating their young patients.

£50 could help to buy new, gentle and non-invasive machines to provide respiratory support to sick babies who need help with their breathing.

The future for Evelina London…In the last decade, children’s healthcare has improved dramatically. Thanks to better diagnostics, pioneering surgical interventions and ever-improving clinical care, we are able to do more for the very sick children we treat. However, in the last 10 years the clinical work we do at Evelina London has increased by over 50%. We are experiencing a growing demand for our services, with many

more children needing our expertise and exceptional skills.We want to continue to provide care tailored to the needs of all our young patients and their families. Through vital research and clinical trials, we can improve methods of diagnosis, innovative treatments and interventions, with the

aim of giving all our young patients hope for a bright future.Can you help us do this?Find out how you can show your support at www.supportevelina.org.uk

Text EVELINA10 to 70025 to donate £10

18 19

Text EVELINA10 to 70025 to donate £10*Get your kids to raise £10 for Evelina LondonFind out how at www.supportevelina.org.uk/evelina10 *for terms and conditions, please see our website supportevelina.org.uk.

Evelina London Children’s Hospital is part of Guy’s and St Thomas’ NHS Foundation Trust.Guy’s and St Thomas’ Charity, Francis House, 9 King’s Head Yard, London SE1 1NA. Registered Charity No. 1160316.Company limited by guarantee registered in England and Wales No. 9341980

Raise £10 for our

10th birthday

We are