A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
A better
future for
seriously
ill children
STARTS
HERE.
Highlights Report
2016/17
Highlights from 2016/17 1
2 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 3
Our mission at Great Ormond Street
Hospital Children’s Charity (GOSH
Charity) is to enhance Great Ormond
Street Hospital’s (GOSH) ability to
transform the health and wellbeing of
children and young people, giving them
the chance of a better future.
The NHS can only do so much. It meets
the day-to-day running costs of the
hospital, but GOSH relies on the
support of all of the charity’s donors
and volunteers, in order to pioneer new
treatments for more children and provide
the extraordinary care the hospital is so
well known for.
Everything you’ll see in this report was
supported by GOSH Charity. And only
possible thanks to people like you.
Evie is nearly three and
she came to GOSH for a
heart transplant.
4 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 3
The year in numbers £10m
Thanks to you, this year has been an WAS RAISED
incredible one for the charity. Here are through the Tick Tock Club’s
third appeal towards creating
some of the highlights: the world-class Dorfman
Surgery Centre.
£550,000 176,849
was raised by our
SUPPORTERS
7,500
RUNNERS
CHRISTMAS
PARTNERSHIP now give regular gifts
to the charity.
took part in the record-
breaking Royal Bank of
WITH Canada Race for the Kids,
SAINSBURY’S raising an amazing £1 million.
£13.6m 126 VOLUNTEER
22,600
INVESTED BY CHRISTMAS
THE CHARITY IN CHARITY MESSAGES
RESEARCH AMBASSADORS were sent by supporters
to support the lives of children helped us raise awareness to children on the wards
with complex conditions. about GOSH in their local of GOSH through our
communities. Stocking Appeal.
£1,124,715
was raised at the
2016 RECORD-
527
PARENTS AND
148
GRANTS
BREAKING FAMILIES AWARDED
GOSH GALA will be able to stay at Sandwich from supporting the hospital’s
Street, our new parent Play Team through to funding
accommodation close to the a package of new operating
hospital, every year. theatre equipment.
4 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 5
A rewarding year Being the best we can be,
to build a better future
What we can achieve together never fails to astound One of the key aspects of my role as Chairman, and
me. The GOSH family consists not only of those the role of all our Trustees, is to ensure that the work
that work for the hospital and charity, but also our GOSH Charity supports is aligned with the most
supporters and of course the extraordinary patients urgent needs of the hospital. Every day brings new
and families who are at the heart of everything we do. challenges at GOSH and every donation of time
This year we were delighted to welcome the children’s or money to GOSH Charity helps to meet them –
medical research charity, Sparks, into our family. I’m giving young patients the best chance to fulfil their
excited that together, we are set to launch the largest potential. The charity must enable GOSH to go above
funding scheme of its kind in the UK – making £2 and beyond the care they would be able to provide
million available for child health research. without charitable donations.
Thanks to our incredible supporters, in 2016/17 we Demand for GOSH’s care continues to rise, and I’ve
were able to spend £109.6 million on building a better seen for myself how far the hospital has come over
future for seriously ill children. I feel privileged to be the years. In this report we highlight how the amazing
able to walk the corridors of the hospital and see the £101.8 million you helped to raise has been spent
difference your donations make to young patients It’s been a busy and rewarding year, and there’s plenty and the projects that we have been proud to make close to their children while they have treatment at
and their families. I hope the coming pages will allow planned for next year too. The hospital will open the possible this year. GOSH. It also included a range of medical equipment
you to see this for yourself, too. Your generosity means charity-funded Premier Inn Clinical Building, the final and support projects that will improve the treatment
children and young people at GOSH have access to part of the Mittal Children’s Medical Centre. We will One thing I notice more and more, is the pace at and care of children and families.
life-changing medical advances through the latest cut the ribbon on brand-new parent accommodation which technology is changing. I am delighted that
facilities, cutting-edge equipment and ground- and explore exciting projects like a new centre for the charity has been able to support GOSH’s vision Our work would not be possible without the tireless
breaking research. It also means we can enrich the sight and sound. With support from GOSH Charity, of becoming a truly digital hospital by funding effort and dedication of our Trustees. Jennifer
hospital experience with things like play and restful the hospital will expand their vital paediatric and electronic patient record and research data analysis Bethlehem, Nina Bibby, Nicky Bishop, Sandeep
outdoor spaces. neonatal intensive care units, and begin work on a platforms. These systems will revolutionise the care Katwala and Michael Marrinan joined the Board of
new facility that will allow doctors to perform scans and treatment of every child and impact every Trustees this year – bringing an exceptional depth
The ways you’ve given your support have been as during complex surgery, ensuring the best outcomes aspect of the hospital’s work. In the future, remote of experience to the charity and reflecting our
diverse as ever this year. Royal Bank of Canada Race for children with brain tumours and epilepsy. Finally, monitoring could allow more children to be assessed commitment to have the strongest governance focus
for the Kids 2016 was a truly incredible day, with a one of our most transformational investments will from home, the very latest research evidence will and processes possible. I’d like to thank Steven Sharp,
record 7,500 participants raising an impressive £1 start to come to life – harnessing the power of digital be on hand to inform treatment decisions, and the who stepped down this year, for his contribution as
million – I’m already looking forward to this autumn’s technology in the hospital to support the very best system could even support the use of robotics. a Trustee.
event! One of our landmark fundraising events – the care and experience for every single child.
GOSH Gala – had its best year ever, and we celebrated This year has also seen GOSH Charity invest in, and And finally, a huge thank you to all of the charity’s
the 10th anniversary of our pioneering Tick Tock Club, We couldn’t do any of this without your support, and undertake, digital projects to improve the way we supporters. Without you, the hospital would not be
who have helped fundraise for some of the hospital’s we are deeply grateful that, together, we can look work. We have implemented a new way of storing the the truly exceptional place it is. Your support, and the
most urgent needs. Many of you even shopped to forward to another rewarding year. records of all our supporters, ensuring we maintain extraordinary patients at GOSH, fuel the charity’s
support us, when we were chosen as Sainsbury’s the very best standards of data protection and give drive to make a better future for more seriously ill
Christmas charity partner. It was such a boost for us, our supporters more flexibility in telling us how they children and young people. I’m proud to be a part of it.
and important to raise awareness that GOSH patients want to hear from us. We want to ensure that GOSH
are in hospital, even at Christmas. Charity is exemplary in looking after our supporter’s
interests, and this system will help us to do so for
This year saw more supporters than ever choosing years to come.
to give a monthly donation. These regular gifts help
us to plan for the future, so we’re grateful for your But of course, those were not our only investments.
support. We also renewed our ‘supporter promise’ – to Thanks to you, we were able to invest £109.6 million
treat personal details and donations with the utmost into enabling a better future for seriously ill children.
respect. In this report, you will see how our money has Tim Johnson This included progressing exciting building projects John Connolly
been raised, how we spent it, and how we make the Chief Executive such as two nearby properties which will become a Chairman
best use of every donation. Great Ormond Street Hospital Children’s Charity home away from home for families needing to stay Great Ormond Street Hospital Children’s Charity
6 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 7
What we raised, together
A breakdown of where our
income came from in 2016/17
67%
Donations
14%
Legacies
6%
Trading
MONEY RAISED
2%
Investment income (realised)
2016/17
£101.8
2%
Property and other income
MILLION
1%
Sparks income
8%
Gain/(loss) on investments
£5.7m >£2m
MORE OVER
>£88m
RAISED
RAISED OUR TARGET BY YOU
THAN 2015/16 INCOME
8 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 9
Where your money went
A breakdown of where we spent
our money in 2016/17
£13.6 million p16–27
Pioneering research
into revolutionary gene therapy,
creating tailor-made organs for
transplant, and finding treatments for
the most complex childhood illnesses.
Humaira, age five, in the
playroom whilst waiting WE COMMIITTED
for an appointment on a £37.8 million p28–39 2016/17
cancer ward.
Advanced medical equipment
for treating the toughest and rarest £109.6
conditions, from ultrasound scanners to MILLION
new software to improve patient care,
experience and research.
£7.8 million p40–49
Patient and family support
services that can ease the burden
on families, raise spirits, and support
children and young people through
their treatment.
£22.2 million p50–57
The power of every pound Rebuilding and refurbishment
£
All of your money helps improve
wards and medical facilities designed
the lives of children, whether it’s
around children and young people that
immediately going towards one of
let the hospital treat more patients in
our four funding areas, helping us
the best possible surroundings.
save for large upcoming projects
or allowing us to raise more money
for the future. The way we spend 72.5p
money can vary year on year,
especially if a new project such as
Charitable £28.2 million
The NHS can only do so much. It meets the day-to-day
a building requires a large upfront
activity Running costs and raising funds
running costs of the hospital, but GOSH relies on the
helping us to run the charity and raise
sum.
support of all of the charity’s donors and volunteers to Because of this, we try to 27.5p more money for the future.
go above and beyond, pioneering new treatmentslook for at the long term relationship
more children and providing the extraordinary care between the cost of raising money Raising the next pound*
the hospital is so well known for. and the donations you give us. *Average over five years
10 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 11
Aiming for a better future
We are committed to sharing our aims with you, as well as how we
perform against them. Here you can see how we did in 2016/17.
Aim Achieved? Status Future
Growing
Grow our income from fundraising Yes, our income was Aim to maintain our income.
and our assets to £98 million. £101.8 million.
Ensure that, on average, at Yes. We achieved this Ensure we make the most of every
least 70p from every £1 goes to in 2016/17 and, on pound year on year.
charitable activity. average, over the last
five-year period.
Fundraising
Raise over £93 million from No. We raised £88 Raise £96 million.
fundraising. million.
Increase our fundraising activity Yes. We launched Continue to grow support in this
for research. a new £50 million area, including launching a public
appeal for research. appeal to raise £5 million.
Investing
Support ongoing construction of Yes – ongoing. Premier Inn Clinical Building to
...
the Premier Inn Clinical Building open in 2017–18.
and Zayed Centre for Research
Zayed Centre for Research to
into Rare Disease in Children.
officially open in late 2018.
Fund research, medical equipment, Yes. See more detail Continue to ensure that our
patient, family and staff support on pages 16-57. funding streams meet the most
projects, and rebuilding and urgent needs of the hospital.
refurbishing that meets the needs
of the hospital.
Improving
Update and monitor our Yes. Review of Review and update all policies
fundraising policies and practices practices undertaken. and practices in line with
to meet the highest sector and Actions identified the revised data protection
ethical standards, including being implemented. legislation, new guidance
updating the way we store and New supporter and regulations. This will
use supporter information. database to launch ensure effective management,
May 2017. compliance and assurance for our
supporters.
Develop a culture of leadership Yes. Launched our Embedding our new people
among our staff through our new people strategy strategy to meet our objective of
people strategy. in November 2016. engaged, enabled and effective
staff and volunteers.
12 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 13
Ensuring your donations
make a difference
It’s my role to oversee how the charity gives funds to GOSH
and, in the case of research, scientists around the country.
Whenever I’m in a meeting about funding, or reading
an application, it’s always in the back of my mind that
everything we do is only possible thanks to the generosity
of our supporters, donors, partners and volunteers.
Maximising the power of every pound, including making
sure that we’re thoroughly evaluating the difference we’re
making, is a high priority.
Our funding process is very methodical and rigorous.
It involves leaders in the field, expert committees, and
our highly-experienced Trustees, who play a vital role in
carefully reviewing the applications and asking tough
questions (for a list of Trustees please see page 69). We
check that each project aligns with one or more of the
“Making sure that we ways that the charity aims to improve the lives of seriously
ill children and their families. These are known as our
thoroughly evaluate impact goals:
the difference we're
making, is a high • more children treated Lewis, age four, from
• improved patient outcomes Surrey, on an isolation
priority.” • better patient experience ward at GOSH.
• enhanced experience for families
Making choices about what to fund, and measuring the
impact of projects, is not always easy. If we purchase a
piece of clinical equipment, we can count the number of
young patients who have benefited. But a fundamental
scientific discovery, made during research that we’ve
funded, may not have an impact for years. And even then it
may not be in the way that was first anticipated. However,
I firmly believe that just because something is hard to
evaluate, doesn’t mean we should shy away from it, and
we’re striving to put clear and appropriate measures in
place for the wide range of projects we support.
Measuring the impact of our funding may sometimes
be difficult, but in very many cases it’s plain to see the
difference your donations have made. I hope that, as
you read the stories that follow, you’ll feel proud to be
part of GOSH Charity. By supporting the charity this year,
you have helped to change the lives of seriously ill children
and their families.
Kiki Syrad,
Deputy Director (Grants)
14 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 15
PIONEERING
Kaycee, age five, has a nerve-wasting
disorder and is on a clinical trial at
GOSH. She is enjoying the sensory
room with her dad.
RESEARCH
With your help, this year we
funded pioneering research
to make discoveries that will
improve the lives of seriously ill
children now and in the future.
16 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 17RESEARCH:
the year at a glance
Key highlights “Without the staff
working hard to
Our new partnership with develop these new
the children’s medical drugs and treatments,
research charity Sparks will
my life would be
make more money available
for vital child health very different to how
research across the UK. p20 it is now.”
We invested in special stem
cells that can be created
Joe, GOSH patient
from a patient’s own tissues,
like skin or hair, which could
hold the key to treating
many conditions. p22
By increasing GOSH’s
capacity to run clinical
trials, we helped more
13.6m
INVESTED IN
children get access to
groundbreaking treatments.
RESEARCH
to support the lives of
We began a global search children with complex
for world-leading cancer conditions.
professors to join GOSH.
77
PIONEERING
“Nina is testament to what
research can do. We entered
a trial for untested gene
therapy – it was a real risk,
but we had run out of options.
RESEARCH Now she is so full of life
and mischief, just like any
PROJECTS other child!”
funded by GOSH Charity. Graeme, GOSH dad
18 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 19The new GOSH
Charity family
In February 2017, Sparks, the children’s medical
research charity, merged with GOSH Charity. Sparks
was set up in 1991, and to-date has funded more Could a bone-forming The race to find the first ever treatment for a rare
than 300 child health research projects across the
super-gel treat cleft palate? brain condition
UK and overseas. Sparks will continue to raise money
exclusively for child health research across the UK, in Dr Richard Shelton, Professor Yanick Crow,
a joint funding initiative with GOSH Charity. University of Birmingham University of Manchester
From next year, we will merge our national research Children born with a severe cleft lip Professor Yanick Crow is an expert in Labrune syndrome, an
funds, making up to £2 million available. This will be and palate undergo a painful exceptionally rare and devastating condition that affects the blood
the largest fund in the UK dedicated to child health operation at the age of eight to vessels in the brain. There is currently no cure. He says: “Support
research, and will benefit children at GOSH, nationally repair the gap in their gum. Dr from GOSH Charity has allowed us to take advantage of a major
and around the world. Richard Shelton wants to see opportunity to not only improve the diagnosis of Labrune syndrome,
if he could replace this with a but to work towards the first ever cure.”
Here are some examples of projects funded through groundbreaking technique that
this year’s national research funds. Marked locations involves injecting the site with a
are places where GOSH Charity and/or Sparks liquid gel that sets in the body
projects were happening in 2016–17. and contains cells that have been
programmed to form bone tissue.
When biology meets engineering
– a new approach to preventing
preterm labour
‘Off-the-shelf’ cells to Dr Tina Chowdhury,
kill cancer Queen Mary University of London
Professor Waseem Qasim, Babies who are born too soon can have
UCL Great Ormond Street Institute issues that affect them for life. A major
of Child Health cause of premature birth is early rupture of
the membranes, or sac, that surround the
Professor Waseem Qasim wants to baby. Once they’re damaged, they can’t be
create a treatment using immune repaired. Dr Tina Chowdhury is working on
cells from healthy donors that, when an extraordinary innovation that will help
combined with special cancer- a mother’s membranes to heal - meaning a
flagging molecules, can hunt down brighter future for more children. She says:
and destroy blood cancers. This “To have potentially found a way to reduce
could offer the hope of cures for preterm births and prevent early deaths of
even more children. young babies globally is incredibly exciting.”
20 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 21The cells with
superpowers
New stem cell technology is revolutionising the way we approach
medicine. GOSH is leading the way in using these techniques to
understand and treat childhood diseases.
Each of us started life as one single cell, which small sample of hair, skin or blood is all that’s
contained all the instructions needed to develop needed to create a liver cell, a nerve cell or almost
into a human body. Tucked away in that one any other type of cell.
cell, was every scrap of information and all the
foundations needed to drive the growth of the The magic of these cells doesn’t stop there. They
hundreds of different cell types in our body – from hold the same genetic information as the person
hair and skin cells, to nerve and blood cells. they came from, meaning they can be studied to
understand that patient’s illness or to test which
But how did that one first cell, create so many cells treatments might work for them. In the future, they
that look and behave differently? It’s all thanks to may even be used to create a whole new organ
stem cells. tailored to an individual. It might sound like the
stuff of science fiction, but it’s happening right now,
Under the right conditions, stem cells have the right here at GOSH, supported by funding from
unique ability to become almost any cell in the GOSH Charity.
body. They’re your body’s own blank canvas, primed
to create biological masterpieces – from individual The implications are huge. From the potential to
cells to whole organs. save a child’s sight, to building new organs and
finding treatments for complex nerve disorders,
A strand of hair is all you need GOSH Charity funding is allowing researchers to
It’s a common misconception that adults don’t have push the boundaries of stem cell medicine.
stem cells. They do. Including in our bone marrow,
where they provide a lifelong supply of every type By embedding iPSC technology in our five-year
of blood cell we need. research strategy, the charity will continue to help
GOSH gather all the techniques, facilities and
But research has led to a remarkable new era expert staff they need to keep up with this rapidly
for stem cells. Scientists can now transform cells evolving area of medicine.
from the hair or skin into stem cells, called induced
pluripotent stem cells (iPSCs). This means a
The implications are huge.
From the potential to save a
child’s sight, to building new
organs and finding treatments
for complex nerve disorders,
GOSH Charity funding is
pushing the boundaries of Computer-generated
stem cell medicine. close up of a stem cell.
22 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 23Reprogramming or editing under special conditions in the lab
Creating stem cells in the lab
Stem cells can become almost any cell in the body. Researchers
can now make a kind of stem cell called an induced pluripotent
stem cell (iPSC) in the lab, from a patient’s own cells.
STAGE 1 bal eht ni snoitidnoc laiceps rednu gnitide ro gnimmargorpeR
Sample taken from
a patient.
Building organs in the lab Saving sight Repairing nerve damage
eg. Hair, blood or skin. One of our key priority areas in our Professor Jane Sowden and her Together with colleagues, Dr
research strategy is regenerative team hope to use iPSCs to help Mills and Dr Tuschl, Dr Manju
Reprogramming or editing under special conditions in the lab medicine – replacing, engineering save the sight of children with Kurian recently discovered a
or rebuilding human cells, tissues or diseases of the retina – the layer of new disorder where the metal,
Patient cells organs to restore normal function. nerve tissue that allows us to see. manganese, accumulates in the
GOSH Charity have long supported Retinal diseases are the leading brain. Manganese is essential
Reprogramming or the pioneering work of Professor cause of blindness in the developed for a number of important
Paolo De Coppi, a world-leader in world, and for many children with functions in the brain and is
STAGE 2 editing under special
conditions in the lab this field. rare genetic conditions affecting found in many foods, from fruit
Reprogramming
Patient-specific stem or editing under special conditions in the lab Incredibly, over the coming years
sight, there is currently no cure. to oats. It is usually handled
by the body with no problems,
cells created.
Spe cial conditions to turn stem cells into desired cell type
These are able to turn into
he plans to build and transplant a
foodpipe (oesophagus) into a child
Healthy retinal cells grown using
iPSCs could be transplanted to
but in this newly identified
condition, the body cannot handle
almost any cell in the body. whose oesophagus has not formed restore or preserve a child’s sight. manganese properly, causing it
epyt llec derised otni sllec mets nrut ot snoitidnoc laicepS properly. To do this, he will add a The team are also studying retinal to build up. This leads to severe
child’s own stem cells to a scaffold cells from patients with genetic difficulties in movement and
created using tissue from animals. conditions, to learn more about painful body spasms that worsen
Stem cells Special conditions to In the future, this approach could how they differ from healthy retinal significantly over time. Sadly,
turn stem cells into also be carried out using iPSCs. cells. These cells are also a good patients often lose their life to
STAGE 3 desired cell type
gosh.nhs.uk/regeneration
testing ground for potential new
sight-saving drug treatments.
the condition in childhood.
Stem cells become The team are growing brain cells
desiredSpecial
cell type.conditions to turn stem cells into desired cell type from iPSCs to study the disease
and understand why it happens. In
the future they hope to use the cells
to help develop treatments that
This year we funded: will slow down or even reverse the
• One new dedicated progression of the disease, giving
state-of-the-art iPSC more children a brighter future.
Nerve cell Heart cell Immune cell facility at the UCL Great
Special conditions to turn stem cells into desired cell type Ormond Street Institute
of Child Health (ICH),
The future starts here increasing our capacity to
STAGE 4 Eventually our researchers grow and study stem cells.
Cells can be used hope to use cells like these
• A research manager
to grow full organs in the lab
to test drugs, to coordinate projects
that can be transplanted into
understand diseases patients, without the risk
using stem cells to
or even transplanted of rejection.
construct organs.
back into patients.
24 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 25How yesterday’s donations
are changing lives today
When a new building opens or a piece of medical equipment
is delivered to GOSH, the impact on patients is immediately
clear to see. Other investments, like research, take longer to
benefit GOSH’s young patients, but are just as life-changing.
Gabriella goes back A new frontier in Boosting clinical A step forward for a Helping families Pinpointing the causes
to school muscle wasting research complex movement understand genome of life-threatening brain
diseases disorder sequencing infections
APRIL MARCH
2016 2017
Rheumatic conditions affect GOSH Charity support Professor Your donations help to support GOSH Charity has supported Thanks to research that we’ve Encephalitis is swelling in the
joints and soft tissues, and can be Francesco Muntoni – a world- the work of the Somers Clinical the work of Dr Manju Kurian been funding since 2015, a short brain caused by an infection. The
painful and exhausting. We have leading researcher of devastating Research Facility at GOSH, giving since 2013. This year, she made animated film was produced to condition can be caused by many
supported the work of leading muscle-wasting conditions like more children access to clinical the news when she discovered explain how ‘glitches’ in DNA different viruses or bacteria but
rheumatology researcher Professor Duchenne muscular dystrophy trials of cutting-edge treatments. a gene that helps predict which can cause disease. This was in over 60% of cases the cause
Lucy Wedderburn for many years. (DMD). A breakthrough new drug Thanks to the outstanding work children with a painful movement designed to help patients and of the infection is unknown. This
Her work has improved treatment developed by his team reached being carried out there, GOSH were disorder will benefit from deep families who are considering means doctors don’t know which
for children like Gabriella, who a landmark step in 2016 – being awarded an additional £3 million brain stimulation surgery. Katie undergoing genetic testing to treatment will work best. With
are now able to manage their approved for use in the United investment from the National has already benefitted from the understand the intricacies of your donations, we funded work
condition enough to go back to States. Professor Muntoni says: “It’s Institute for Health Research research. Her mum, Sarah, says: reading a child’s entire genetic to see if a new technique, RNA seq,
school. Mum Lyn says: “Without the hard to overstate the significance (NIHR). This will allow the Facility “We’re only a few months on and code. It also helps explain how could pinpoint the exact cause.
research done at GOSH, Gabriella of this approval. Before, if you to give more children with rare Katie’s already walking better and important this is for the future of In early 2017, GOSH launched the
would not be going through the rite were told your son had DMD there and complex diseases the doesn’t need as much support. The understanding diseases. first testing service of its kind in
of passage of starting secondary was nothing you could do. Now opportunity to join trials of future is bright.” Europe. This will help more children
school with her friends.” there is hope. I am sure it’s just the brand-new medicines. gosh.nhs.uk/mygenome get life-saving treatment for brain
beginning of better outcomes for gosh.org/katie infections – fast.
gosh.org/gabriella these children.” gosh.nhs.uk/researchfacility
gosh.nhs.uk/dmddrug
26 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 27MEDICAL
Isita is five years old
and is having cancer
treatment at GOSH.
EQUIPMENT
With your help, this year
we provided high-tech
hardware to ensure children
at GOSH have access to
the least invasive and most
effective treatments.
28 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 29MEDICAL EQUIPMENT:
the year at a glance
Key highlights “I think defibrillators
are an amazing bit
From life-saving
defibrillators to the
of kit. Without one
latest equipment that being used on me,
helps diagnose genetic
conditions quickly, this year
I wouldn’t be here.
we provided vital tools to I know CPR too.”
help GOSH go above and
beyond for its patients. Joe, GOSH patient
We funded four of the
latest ultrasound scanners.
One will help to diagnose
heart problems in babies
before they are born,
another will assist in sight-
saving operations. p32
£31.5m
COMMITTED TO
Some of GOSH’s operating
theatre equipment NEW DIGITAL
needed updating, so we SYSTEMS
provided funding to put
the most up-to-date kit that will revolutionise patient
at surgeons’ fingertips. care and research, for every
child who comes to GOSH. p38
We funded a high-tech
scanner that allows
surgeons to view a
patient’s spine in multiple
“Thanks to a specialist
dimensions during complex scan at 20 weeks, my
spinal surgery. p36 son’s heart condition
was diagnosed early
and they were able to
continue to monitor us
both throughout my
pregnancy.”
Lucy, GOSH mum
30 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 31Scanning the body with sound
This year, the charity funded a fleet of new ultrasound machines
that are already benefitting young patients across the hospital.
Some of us will have had an ultrasound scan that body – with different tissues returning sound waves
we won’t even remember – because we hadn’t yet at different rates. The ultrasound machine interprets
made our grand entrance into the world. Pregnancy this information to create a physical image of our
ultrasounds have been a routine part of maternity internal anatomy.
care in the UK for decades, but this imaging
technology has many other important uses at GOSH. In this way ultrasound opens a window on our insides,
safely and without pain. Clinicians can use it to help
When you have an ultrasound scan, your body acts as diagnose complex conditions, guide expert hands
a sophisticated ‘echo’ machine. Inaudible sound waves during surgery, and make sure babies are developing
sent out from the machine are reflected back by the as they should in the womb.
Original wave
MEET CODY
Cody was born with a condition that affects
blood vessels and can cause heart failure and
problems with blood supply to the brain. His
condition was spotted when routine checks
showed his head was growing at an abnormal
rate compared to the rest of his body. After a
CT scan at his local hospital, Cody was referred
to GOSH with a diagnosis of Vein of Galen
malformation. Only around 10 to 12 children in
the UK are diagnosed with the condition each
year. GOSH is the largest specialist hospital
within the UK treating these children. Cody
was treated in one of GOSH’s interventional
radiology suites. The delicate procedure
involved using ultrasound to guide careful
insertion of tiny metal coils into an artery in
Ultrasound Cody’s leg. The coils were slowly worked all the
machine way up to his brain to correct blood flow to the
malformation. It was a long five hours for Cody’s
Mum and Dad as they anxiously waited for his
procedure to finish. Everything went well and
Reflective wave further scans a few months later confirmed
that the procedure had been a complete
success. Mum Luisa said: “It was amazing…
I’d spent months crying with fear and I just
wanted to cry again!”
32 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 33From diagnosis to ‘pinhole’ Delivering medication Diagnosing heart problems
surgery – interventional during eye surgery before birth
radiology Children undergoing eye surgery At 12 weeks of pregnancy, a baby’s
Thanks to advances in imaging, may need tubes fed into their heart is no bigger than a grain
clinicians can now diagnose and blood vessels to deliver medication, of rice. The structures contained
treat some conditions without or injections into nerves to numb within the heart are even tinier, but,
open surgery. That means less the areas around them. Getting the with the right equipment, doctors
pain, a quicker recovery, and less right placement of these tubes and can diagnose some major heart
time in hospital for the patient. needles is key, not only to ensure problems at this very early stage.
that medication and anaesthesia At 16 weeks, with the heart still
Guided by ultrasound and get to where they’re needed, only the size of a peanut, they can
other imaging, interventional but also to avoid damage to diagnose even more.
radiologists feed narrow tubes and surrounding tissue and long-term
wires through a patient’s blood side-effects. GOSH frequently receives
MEET LUCY AND
vessels to find the cause of their referrals of pregnant women
symptoms, or even to treat the Ultrasound can help guide these from other hospitals if something
disease itself. From taking a kidney procedures, providing a clear worrying shows up on an early
biopsy to fixing a narrowed blood
vessel, all that’s needed is a tiny
image that allows the doctor to
see – in real time, as they insert
ultrasound scan. This year, GOSH
Charity funded a new, upgraded
GEORGE
two-millimetre incision in the skin a tube or needle – that the ultrasound scanner that can First-time mum Lucy was having a routine
– smaller than a sesame seed! placement is perfect. produce images of a far superior pregnancy scan when the nurse spotted
quality to current machines. something wrong with her baby boy’s tiny
At GOSH, more than 3,000 of The Ophthalmology Department at heart. Further detailed scans showed a
these intricate procedures are GOSH sees over 20,000 outpatients This is already helping the narrowed valve and a large hole between two
performed each year, and demand and performs more than 400 eye hospital’s heart specialists to of the chambers. Lucy was devastated. His
is always increasing. This year, your operations each year. Thanks to diagnose problems in unborn only chance of survival would be open-heart
donations helped us to purchase your donations to GOSH Charity, babies at a much earlier stage surgery at around three months old. For Lucy
a new ultrasound machine for the the department’s outdated of pregnancy. This gives parents and her husband it felt like a nightmare. But
team. It arrived in November 2016, ultrasound machines have been and doctors more time to prepare at GOSH they knew they were in safe hands.
and is already making a difference. replaced by two new, state-of-the- and plan and for some families, it “When they referred us I just felt relief,” says
art scanners with excellent image may even be possible to consider Lucy. “I wouldn’t have wanted him to be
Adit Dogan, Specialist quality, making procedures quicker treatment before the baby is anywhere else.”
Radiographer, says: “Thanks to and safer for the children who born. These options may grow as
the new ultrasound machine, need them. the exciting area of operating on Since newborns are too small for such major
we have better image quality babies in the womb develops. surgery, George had to wait – with his oxygen
and technology that allows us levels closely monitored – while he grew bigger
to share images more readily. and stronger. At 14 weeks, George had his
We’re now helping three operation and one year on Lucy explains that
times as many children.” “he’s a real character, cheeky, funny, and a
very happy little boy.”
34 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 35Viewing the spine in
another dimension Megan still comes to
Great Ormond Street
Hospital with her mum,
Naomi, so doctors can
check her progress.
This year we helped GOSH to purchase a mobile scanner
that will make complex spinal surgery safer.
Inserting metal screws next to the largest nerve super-
highway in the body, the spinal cord, is among the most
intricate operations GOSH performs. Just one mistake
could have disastrous consequences. And yet every year at
GOSH, hundreds of children undergo this kind of operation,
to correct severe disorders of the spine that can cause
deformity, pain, weakness and disability.
GOSH’s surgeons are experts in their field, with many
successful operations under their belts, but they continually
strive to reduce the risks to the child during these
procedures. Every patient is different and this means each
surgery brings a new challenge. To ensure the best possible
placement of the pins and screws needed to repair the
spine, surgeons currently use two-dimensional X-rays. This
means a surgeon positions a screw and then needs to
take X-rays from different angles to check the placement is
correct before proceeding.
Now, in a bid to make these operations safer and
reduce the need for follow-up operations, we’ve funded
a mobile scanner that can be used in the operating
theatre during complex spinal surgery. Shaped a bit like
a donut, the impressive piece of kit gives a high-quality,
multidimensional view of the spine in just one ‘spin’,
MEET MEGAN
helping to guide surgeons as they work. This could benefit “My condition means my spine is curved in the shape of an ‘s’.
the 140 children and young people who undergo spinal We don’t know what caused it, but it happened during puberty.
reconstruction and repair surgery each year at GOSH, by I was shocked when I saw my first X-ray – I had no idea my spine
making the procedures safer and more accurate. was so misshapen.
“I had MAGEC metal rods put in my back at GOSH, which
“I think spinal surgery and neurosurgery straightened part of my spine. They also have magnetic motors
are just the tip of the iceberg for this piece in them which means that I haven’t needed to have an operation
of kit. I happened to be walking along every time I grow. The doctors put a magnet against my back that
causes the motor to spin around, which extends the rods.
the corridor with a surgeon from another
discipline and mentioned it to him. Now “Before, I wasn’t able to be very active, but the treatment means my
spine is not as curved as it used to be. I am so much taller and I can
he’s thinking about how he could use it. breathe properly too. I’m really excited because it means I can go to
I think there will be interest from other Thorpe Park next year with my friends, which is something I couldn’t
do before. I’ll also be able to do lots in PE at school and go climbing
surgeons as well.” and skiing. I even did the Duke of Edinburgh’s Bronze Award in
September and October 2016.”
Mr Richard Reilly,
GOSH Service Manager for Surgery
36 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 37The future at our fingertips:
digital innovations to transform
patient care
“Medicine is predicted GOSH has embarked on a new digital project that will enhance the
to change more in
experience and care of all patients and families at the hospital and fuel
life-changing research.
the next decade than
Digital technology is advancing at an unparalleled allow real-time 24-hour monitoring of patients in the
rate. With funding from the charity, GOSH can now hospital and, when necessary, at home – alerting if
take advantage of this to help give every child and action needs to be taken, and gathering information
family the best care and experience possible. for research.
in the previous 100 The systems we are helping to purchase will provide a
single, comprehensive clinical record for each patient,
which is fully integrated with medical devices. It will
This comprehensive data will drive a research and
innovation platform, which will enable GOSH to carry
out research more effectively. This could lead to
years. We want to be
provide a digital connection with patients at home prediction of catastrophic events like cardiac arrest
and provide information prior to appointments. The and mine the vast volumes of gathered data to find
system also holds the key to a more efficient check-in new ways to diagnose or treat complex conditions.
process, meaning a better experience for everyone.
at the forefront of
Over 200 hospital staff have been involved in the
Housing all patient data in one place will ensure plans to implement this electronic patient record (EPR)
clinical staff have the most up-to-date information and research system, which will be one of the most
about the needs and care of all their patients. important investments the hospital and charity will
that revolution and
Clinicians will also have access to the latest research ever make. It could even allow GOSH to employ new
evidence through the system, to inform complex technologies in the future, including virtual reality
clinical decision making and ensure consistent and robotics.
standards of care across the hospital. The system will
I can't wait to see
what we can achieve
A BETTER FUTURE STARTS HERE: some of the areas EPR will benefit
for GOSH patients.”
More efficient Innovative Virtual reality Faster Home
check-in process research and robotics diagnoses monitoring
Neil Sebire, Chief Research Information Officer and
Professor of Paediatric and Developmental Pathology
38 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 39CHILD AND
Pelesmenia, age nine, and her mum,
Esmenia, get a lot hof support from
their charity-funded Play Specialist,
Sasha Morris.
FAMILY
SUPPORT
With your help, in 2016/17
we continued to provide
services to ease the burden
on families, raise spirits,
and support children and
young people through
their treatment.
40 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 41CHILD AND
FAMILY SUPPORT:
the year at a glance
Key highlights “GOSH Arts was
a wonderful breath
We continued to fund the of fresh air on a lousy
hospital’s much-loved Play morning of treatment
Team. They help children
and rain. Thank you
come to terms with being in
hospital, ease their worries, for the wonderful
and let children be children, music.”
even while they’re ill. p44
A new innovative system GOSH parent
funded by GOSH Charity
will allow the hospital to
collect on-the-spot feedback
from patients and families,
helping to make GOSH
better for everyone. p48
We continued to cover the
557
FAMILIES
costs of GOSH’s parent
accommodation. This is SUPPORTED
particularly important for
those whose children are by the hospital’s Citizens
being treated in intensive care, Advice Service, from advice on
and those who have travelled debt to guidance on housing
long distances to be at GOSH. and immigration issues.
£7.8m
SPENT ON CHILD
“Through the night, when
your child is in intensive care,
you need to be only a few
minutes away so you can rush
over if anything happens.
AND FAMILY Parent accommodation was
a big help, I don’t know how I
SUPPORT would have afforded to rent
PROJECTS accommodation so close.”
meeting our target of
Magda, Sofia’s mum
spending over £5 million.
42 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 43GOSH’s toy-toting
superheroes
Spend any amount of time at GOSH and you’ll soon
notice a legion clad in purple and lilac, moving
purposefully around the hospital carrying teddies,
buckets of bricks or stacks of books.
This colourful crew is the Play Team, who are
dedicated to bringing fun into the hospital and
making life as normal as possible for the children who
need to be there. They can ease a child’s anxieties
about being in hospital and even help them to recover
more quickly. The team consists of Play Specialists and
Play Workers, who work together to share their unique
expertise in childcare and play.
“Taking play away from a child is abnormal.
That’s what we’re here for: to try and put
some normality back in an environment that
isn’t normal to a child. We help children find
ways to cope. We show them they can have
fun and be in control in hospital.”
Janet Holmes, Senior Play Specialist
160 38
PATIENTS AND
SIBLINGS
MEMBERS OF
STAFF IN THE
THE CHARITY
COVERS THE
COST OF PLAY
SPECIALISTS,
PLAY WORKERS,
In 2016, the Play Team PLAY SERVICE. TRAINING AND
interacted with more than
160 patients and siblings TOYS. Myla, age ten, sharing a
each day.
joke with Play Specialist
Lynsey Steele.
44 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 45A day in the life of a…
“We looked after a child
who was limiting his diet
and didn’t like the texture Play Play
or feel of certain foods. Specialist Worker
His Play Specialist devised
activities to get him used
to new sensations and
mess, all via play. Within BRINGING DISTRACTING PREPARING FOR
a short period of time he FUN INTO THE
HOSPITAL
DURING
PROCEDURES
PROCEDURES
was squelching his fingers Letting children be children,
and helping them to feel
Using activities to redirect
a child’s attention during
Using techniques like role-
play and drawing to help
through dough. His mum
comfortable, relaxed procedures that are invasive, children understand their
and engaged. painful or upsetting, helping illness or treatment, and
to ensure that they get the what will happen to them
treatment they need. in hospital.
was delighted with the
change in his attitude EASING
ANXIETIES
SUPPORTING
THE WHOLE
MAKING
MILESTONES
towards food and eating.” Using therapeutic techniques
to help children relax or
FAMILY
Supporting parents and
carers by explaining
FUN
Delivering activities to
help a child progress and
overcome things that are complicated illnesses to
develop, which complements
upsetting them, such as children. The team also make
the GOSH school and pre-
needles. time to play with siblings.
Mandy Byron school activity centre.
Consultant Clinical Psychologist
46 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 47On-the-spot feedback
to improve patient care
This year, we funded a new system that helps Pelesmenia, age nine,
having a chat with her
patients, families and carers give feedback mum on the ward.
more quickly and easily.
This will tell the hospital what it does well and where it can make
improvements. Compared to the current system, the new ‘real-time’
feedback platform will allow visitors to give feedback at any point during
their journey with GOSH, whether onsite or at home.
Children, young people and their families are at the heart of everything
GOSH does. While the hospital already receives a great deal of positive
feedback, they constantly strive to improve their services to better meet
the needs of patients and families. This can help smooth the journey
through diagnosis and treatment.
The system will incorporate the well-established NHS Friends and Family
Test, but to help GOSH get to the heart of what patients need, it will also
include a bank of carefully crafted questions tailored to different age
groups. Children and young people will help to craft questions that cover
the topics that matter to them, in appropriate language. They will also
help to ensure that the system is designed to be as fun, engaging and
child-centred as possible, so that everyone can take part.
48 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 49REBUILDING AND
REFURBISHMENT
With your help, GOSH’s
redevelopment programme
continued with the creation of
patient-centred spaces to deliver
world-class care for some of the
UK’s most seriously ill children.
The new Premier Inn Clinical
Builidng will include a new
cardiac ward, benefitting
patients like Connie, age
three, from Essex.
50 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 51REBUILDING AND
REFURBISHMENT:
the year at a glance
Key highlights
“I can’t wait for
Construction of the Premier my bigger, better
Inn Clinical Building
continued. This is the final
room on the new
part of the Mittal Children’s Leopard Ward”
Medical Centre, due to
open in 2017/18. p54 Ava, GOSH
Work began on a new patient
place for parents to stay
close to the hospital,
and the construction
of the Zayed Centre for
Research continued.
TV’s DIY SOS took on a
challenge with a difference
– transporting an award-
winning garden from the
RHS Chelsea Flower Show
across London to GOSH. p57
141
BEDS
in the new Premier Inn
Clinical Building.
“The nursing team are
all incredibly happy and
caring. In the new wards,
the pressures of the
environment will be taken
away, which will definitely
make us even stronger.”
Polly Livermore,
GOSH Nurse Manager
52 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 53From panthers to pelicans:
the new ward animals
waiting to welcome patients
A herd of exotic animals will greet children, families
and staff when the hospital’s new Premier Inn Clinical
Building, the second part of the Mittal Children’s
Medical Centre, opens its doors to patients later in 2017.
The menagerie of ward mascots were chosen after
8 9 35
BEDS
WORLD-CLASS
(97 inpatient,
WARDS9 ICU,
CARDIAC
INTENSIVE
DAY CASE
BEDS
more than 100 GOSH children voted for their favourite 35 day case) CARE BEDS
birds and animals. From the shortlist, winners were
picked by medical staff – for who the wards will Outside there are
become a second home.
We are thrilled to report that the new creatures to
bounce, stalk, crawl and soar into the wards are
kangaroo, leopard, nightingale, alligator, chameleon,
possum, panther and pelican. In GOSH tradition, the
animals will be assigned to wards according to their
habitats, from ‘living on the ground’ on Level 2 to ‘living
in the sky’ on Level 7.
trees and flowers,
outsideSPECIALITIES
there is
summer and snow.
Outside there is
sun and sky,
now we must
go back inside.
97 £84m 100
INPATIENT
BEDS
INVESTED BY
GOSH CHARITY
CHILDREN VOTED
for the ward
Choosing the ward animals was fun for all those Written by GOSH patient
involved, and added to the excitement about the mascots.
opening of the new building, which has taken more
Ava when she was seven.
than three years to construct and equip. The Premier This poem inspired new
Inn Clinical Building will help GOSH to meet the ever
increasing demand for its world-class clinical care.
Children – some of who will transfer from the hospital’s
oldest buildings – will be welcomed into state-of-the-
art facilities, including spacious en-suite bedrooms.
As well as popping up in colourful artwork around the
clinical spaces, the ward animals will provide a unique
identity that can give children a sense of belonging,
even if they are far from home.
artwork by Sister Arrow,
Ollie Elliot and Ross
Cairns, designed to help
bring the outside into the
new building. 11,252
SQUARE METRES
of newly developed clincial space.
54 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 55Five years of the Morgan Stanley Clinical
A breath of fresh
Building – the first part of the Mittal
air for patients,
Children’s Medical Centre
staff and families
As the Morgan Stanley Clinical Building, the first part “Koala Ward is an
of the Mittal Children’s Medical Centre, reached its incredible place – In May 2016, the TV home improvers from DIY
fifth birthday in June 2017, we look back at what this SOS worked with an army of volunteers to move
charity-funded project has helped achieve so far. lovely, light and airy mountains – of soil! They transported an entire
with a real family feel garden, including more than 2,000 plants,
GOSH surgeon Richard Hewitt has seen the benefits four miles across central London from the RHS
of the building first hand: “Patients in the Morgan to it. Emily liked to ride Chelsea Flower Show to a rooftop courtyard at
Stanley Clinical Building have their own, quiet rooms, round the ward in a the heart of the hospital.
helping them to get a proper night’s sleep. We know
from research that proper sleep can help children
little push-around car, The award-winning Morgan Stanley Garden,
recover more quickly, and I’ve seen myself that these and the play facilities designed by Chris Beardshaw, was hefted into
children go home sooner and that their families are
less stressed – that’s good news for everyone.”
were great” its new home with the help of 200 volunteers
and 73 crane lifts.
Ashley, Emily’s dad The garden opened in September 2016 and has
endured the test of a British winter, providing a
place for visitors to rest and reflect, at any time
of the year. Staff, patients and families can relax
In the five years since the under the garden’s shelter and enjoy a peaceful
atmosphere away from the buzz of the hospital.
Morgan Stanley Clinical
Building opened in
June 2012:
“A tranquil space, where you
can just ‘be’ and not have to
422
children have been treated for Photo of Koala
Monroe is two years
old and having tests
for suspected epilepsy.
make any decisions or think
about anything is very rare in
kidney conditions in the British Ward hospital and it is probably the
Kidney Patient Association
(BKPA) Centre.
thing you need most.”
Lyn, GOSH mum
6,081
patients have been treated
in the Wolfson Heart and
Lung Centre.
13,000
procedures have taken place
in its four state-of-the-art
operating theatres.
56 Great Ormond Street Hospital Children’s Charity Highlights from 2016/17 57You can also read
