Shaping a better future - How your support in 2018/19 is for seriously ill children - Great Ormond Street ...
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How your support in 2018/19 is
shaping a better future
for seriously ill children
Impact Report 2018/19 Impact Report 2018/19
James was diagnosed
with leukaemia on
New Year's Day.
Here he is visiting
Elephant Ward with
his mum.
Our mission
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 best chance to fulfil their potential.
On behalf of the hospital’s young
patients, their families and the staff at
the hospital and charity, thank you. Your
support is giving seriously ill children the
best possible chance of a brighter future.
2 1
Impact Report 2018/19 Impact Report 2018/19
Highlights from the year
APRIL 2018
The Disney Reef opens UK’s first spinal surgery Paul O’Grady meets some A bright future for A new space for reflection Believing in the power
We celebrate the opening of before birth little heroes GOSH patients GOSH unveils a new multi- of research
the very special Disney Reef. GOSH and University College A six-part TV series, Paul We host our first-ever GOSH faith room for prayer and A major new public fundraising
This colourful, underwater- London Hospitals (UCLH) O’Grady’s Little Heroes, Teens Careers Festival, inviting reflection, following a generous campaign launches to support
themed outdoor play area is in surgeons perform the UK’s first premieres on ITV. In this current and ex-patients to donation from a leading UK our ongoing investment in
the heart of the hospital where surgery to repair spina bifida heart-warming programme, take part in CV workshops, Muslim charity, the Al-Khair vital child health research. The
children can relax and enjoy before the child is born. The Paul visits GOSH patients interview training and creative Foundation. The room will be ‘We believe’ Research Fund
themselves with their families. fetal surgery, brought to the UK and families from all over team-building challenges. It’s open to families and staff at will raise money to help find
thanks to funding from GOSH the UK, providing a unique a wonderful opportunity for GOSH, as well as ambulance new treatments and cures
Charity, UCLH Charity and insight into their experiences some of our amazing corporate drivers and paramedics from for children with rare and
UCL, could help children avoid at one of the world’s leading partners to share their across the capital who drop off complex diseases.
lifelong disabilities associated children’s hospitals. expertise and engage with or collect patients.
with the condition. See pg 24. young people.
2 3
Impact Report 2018/19 Impact Report 2018/19
APRIL 2019
Incredible progress in lab- Building a centre for the senses GOSH leading the UK in genetics Funding pioneering ideas from Research to improve Funding child health research
grown organs Construction work begins to and cancer progress bench to bedside epilepsy surgery around the UK
A pioneering team, supported create the UK’s first dedicated GOSH is announced as one In partnership with LifeArc, a Brain-surgeon-in-training Aswin We announce a £2.1 million
by GOSH Charity, unveils facility tailored to children with of seven new UK genomic leading UK medical research Chari begins his role as our investment in 12 incredible
the world’s first functioning sight and hearing loss: the laboratory hubs, selected as charity, we launch a new second GOSH Charity Surgical child health research projects
oesophagus grown in the GOSH Sight and Sound Centre part of NHS England’s initiative scheme to fund high-quality Scientist Fellow. The Lewis Spitz through the joint GOSH Charity
laboratory and successfully supported by Premier Inn. The to improve understanding, research projects that are at Paediatric Surgical Scientist and Sparks annual national
transplanted into mice. In the centre will be entirely funded diagnosis and treatment the brink of being taken from Programme supports surgeons call. This year, funding included
future, this technique could by GOSH Charity, with an of genetic diseases. With the laboratory into new tests to take time out of their intense two projects in partnership
change the lives of children incredible pledge of £10 million ongoing GOSH Charity funding and treatments that can be training programme to carry with other medical research
born with severe gut problems, from Premier Inn getting us off underpinning the hospital’s trialled in children for the out vital research. Aswin hopes charities: Krabbe UK and Dravet
offering hope of personalised, to a fantastic start towards our world-leading cancer service, first time. to use the latest electrode Syndrome UK. See pg 18.
rejection-free transplants. £25 million target. See pg 46. GOSH is also announced as the technology to find quicker, safer
first hospital in the UK to offer and kinder ways to diagnose
NHS patients a groundbreaking childhood epilepsy.
new ‘CAR-T’ therapy, harnessing
the power of the immune system
to treat a type of leukaemia.
4 5
Impact Report 2018/19 Impact Report 2018/19
A year of families, firsts and fond farewells We’ve supported some major upgrades and
innovations in imaging technology this year, from
List, as well as a two-star accreditation and 17th
place in the Top 100 list.
funding vital MRI software updates to opening
a new suite that allows doctors to see what’s The year comes to an exciting but bittersweet
happening inside the body at a cellular level. end for two of us, as we plan to step down from
We’ve also watched two major projects progress our respective posts at the charity. Tim bids a
that are due to complete next year: the Khoo Teck fond farewell after 17 years, having helped to
Puat intraoperative MRI (iMRI) Suite, which will significantly increase funds raised to support
transform brain surgery at GOSH, and the Cardiac the hospital and amplified its support for vital
Catheter Laboratory, which will provide world- child health research. John will step down from
class facilities to treat children with serious heart his role as Chairman, after four years in the post
conditions in a less invasive way. and a wonderful longstanding relationship with
the charity. One of John’s final contributions as
Each year, we’re astonished by the incredible Chairman was overseeing the appointment of the
lengths our supporters go to in raising money for new GOSH Charity Chief Executive. We’re thrilled
seriously ill children and this year has been no to announce that this is Louise Parkes, who brings
different. Whether you’re baking, climbing, racing, more than 20 years of voluntary sector experience
Medicine, science and technology continue to summer 2019. An outpatient area and more than putting aside a little cash each month or making a to the charity. Louise held leading fundraising
move at an unfathomable rate. In the last year at 500 researchers will move into this state-of-the-art one-off donation, your efforts are vital in helping us roles at major charities including the British Heart
GOSH, we’ve watched revolutionary researchers building designed to bring together scientists and support seriously ill children from across the UK. Foundation, Shelter and Barnardo’s, and begins in
developing world-first treatments of tomorrow, clinicians to more accurately diagnose, treat and her new role at GOSH Charity in May 2019.
invested in state-of-the-art technology, seen cure serious childhood conditions. Construction We are, as ever, grateful to all of our dedicated
flexible, future-proofed clinical spaces taking also began on the Sight and Sound Centre and passionate charity staff. This year we were Together and with your ongoing support, we can
shape, and supported services designed to support supported by Premier Inn, due to open in 2020. This delighted to receive an ‘Outstanding’ rating from look forward to the coming year with excitement
the whole family now and in the future. will be the UK’s first dedicated outpatient facility The Sunday Times Best Not-for-Profit Companies and optimism.
tailored to the needs of children with sight and
We know that we can't achieve everything alone hearing loss.
and, this year, key partnerships have underpinned
our research successes. Since children’s medical It’s not all about looking to the future. This year, it
research charity Sparks joined the GOSH Charity has been a pleasure to watch children, families and
family in 2017, we’ve run two incredibly successful staff reaping the benefits of your previous support
funding calls dedicated to supporting child health in the world-class Mittal Children's Medical Centre,
research across the nation. This year, the call – the home to the recently opened Premier Inn Clinical
largest of its kind in the UK – funded 12 projects Building and the Morgan Stanley Clinical Building,
through a joint £2.1 million investment. Projects which opened in 2012.
include pioneering gene therapy for children with
difficult-to-treat epilepsy, creating superpowered It's been a huge team effort across the hospital
immune cells to treat childhood tumours, and this year to prepare for the launch of a new
projects funded in partnership with charities electronic patient record system. Funded by
Dravet Syndrome UK and Krabbe UK. GOSH Charity, it will replace hundreds of separate
systems and transform every aspect of patient
Building work has progressed on several exciting care and experience at GOSH. We've also seen
rebuilding and refurbishment projects that will researchers beginning to harness the power of an
help GOSH realise its vision for the future of child incredible data analytics platform, helping to gain John Connolly Tim Johnson Louise Parkes
health. We’ve watched the Zayed Centre for new understanding that will improve the lives of Chairman of Trustees Chief Executive Chief Executive
Research into Rare Disease in Children coming seriously ill children. GOSH Charity GOSH Charity GOSH Charity
to life, in advance of its official opening from (until March 2019) (from May 2019)
6 7
Impact Report 2018/19 Impact Report 2018/19
Your support in numbers
None of our lifesaving work with children would be possible
without your incredible generosity. Thank you.
381 539 61,295
guests attended Daniel Galvin silent auction items donated by diners added £1 to their bill at
Bracken’s A Night at the our generous supporters were Gordon Ramsay Restaurants in
Museum gala dinner, raising sold at fundraising events, from support of GOSH Charity.
more than £1 million for a new a £50 signed football shirt to a
intra-operative MRI suite that £10,000 holiday in Miami.
will transform the way brain
surgery is performed at GOSH.
1,133 9 6
volunteers generously donated year-old GOSH patient Rowan episodes of Paul O’Grady’s Little
their time to support GOSH completed RBC Race for the Heroes aired on ITV, reaching
Charity and Sparks – from the Kids for the fourth time, despite an average of 3.5 million people
committees organising our undergoing treatment for across the nation each week.
events to supporters acting leukaemia. More than 2,000
as the face of GOSH in their Royal Bank of Canada team
local community. members also took part.
100 8,955 120
year-old Syd jumped out of a people responded to our children attended the opening
plane on his birthday to raise annual supporter survey – of the Disney Reef, a colourful,
money for GOSH Charity. thank you! We're using this underwater-themed outdoor
valuable feedback to shape play area where families can
what and how we communicate take some time away from the
with you, and how often. ward environment.
8 9
Impact Report 2018/19 Impact Report 2018/19
What we raised together Where your money went
Donations
Legacies
Trading
Gain on investments
Investment income (realised)
Property and other income
In 2018/19 we raised In 2018/19 we committed
£90.1 million £84.1 million £98.6 million
from donations, legacies and
trading was raised by you!
Thank you!
Your £1 this year Every pound counts at the long-term relationship £7.4 million* £5.1 million* £24.9 million
Whether it’s supporting our four between the donations you give
71p key funding areas, helping us
save for major upcoming projects
or allowing us to raise more
us and the cost of raising money.
On average over the last five
years, we've committed 71p out of
Pioneering research
Supporting world-leading
scientists to find the diagnoses,
Child, family and staff support
Investing in services to raise
children’s spirits, ease the burden
Running costs and raising funds
Running the charity effectively
and efficiently, and raising more
Goes directly to
charitable activity money for the hospital’s future, every pound directly to charitable treatments and cures on families and support the money for the future.
every penny we receive is helping activities. of tomorrow. amazing staff who care for them.
29p to give seriously ill children the
chance of a better future.
Helps us raise the next pound*
*Based on 2018/19 Some of our biggest projects, £54.1 million* £7.1 million*
such as new hospital buildings,
require large upfront funding. Rebuilding and refurbishment Advanced medical equipment *These figures include an allocated
That means the way we spend Creating flexible, future-proofed and systems support cost to cover essential
administration of the grants.
money each year varies. To reflect facilities designed around Funding cutting-edge kit to
this, in addition to the annual children and young people. address the hospital’s most
figure (see left), we also look urgent technology needs.
10 11
Impact Report 2018/19 Impact Report 2018/19
Looking to the future 2018/19 Aim Achieved? 2019/20 Aim
Ensure that our working Yes, with excellent progress Continue to monitor and
environment and organisational made in five key focus areas: improve internal collaboration
“I am thrilled to be joining GOSH Charity at structure enables our employees organisational design, across the charity by gathering
such an exciting time. Building on the charity’s to perform to their best in order to collaboration between teams, feedback from staff, identifying
meet our business goal of helping working smarter, learning for barriers to collaboration and
excellent foundations, I’ll be shaping our children at GOSH and across greater enablement, and business, tracking the tangible benefits of
priorities for the next few years and beyond. This the UK. project and activity planning, collaborative projects.
governance and learning.
will include transformative building projects to
improve the care and experience of patients and Aim to raise at least £91 million
from fundraising and £100 million
No, we raised £84.1 million from Aim to raise at least £82.8 million
fundraising and £90.1 million from fundraising and £85.9
their families, as well as the next vital phase of in total income. in total. million total income. This figure
our investment in child health research. I’m also reflects a reduced number of
major fundraising campaigns
very excited about introducing and embedding in 2018/19 as we prepare for the
innovation within the charity. It will help us to be next major stage of the hospital's
redevelopment programme.
bolder and to take advantage of new technology
Ensure we make the most of every Ongoing with increased scope, Continue work on a cost-
and ideas, while ensuring we’re making the best pound year-on-year and complete after initial analysis identified review project to maximise
possible use of charitable funds.” a cost-review project. several areas where we could our contribution to
improve the effectiveness of our charitable activities.
Louise Parkes, GOSH Charity Chief Executive from May 2019. fundraising activities.
Continue to gain traction on Ongoing, after the successful Develop a research fundraising
fundraising for research. launch of our public fundraising and communications strategy for
appeal and the continuation GOSH and Sparks, to maximise
of our high-value research our research contribution through
Achieved Not achieved Ongoing fundraising appeal. our high-value appeal, public
fundraising and a new multi-year
Sparks campaign.
2018/19 Aim Achieved?
Completion of the Zayed Centre Ongoing, after some delays to Celebrate completion of the Zayed
Start work on the new Sight and Sound Yes, in July 2018 we announced plans for the
for Research in late 2018, becoming construction. The building will be Centre for Research.
Centre Centre supported by Premier Inn, due Sight and Sound Centre, with news of an
fully operational in 2019. fully operational from late 2019,
to open in 2020. incredible £10 million pledge from Premier
after a celebratory event in July.
Inn. Construction began in October 2018.
Confirm key hospital projects Ongoing, with approval for Shape our priorities for charitable
Launch our refreshed privacy policy in Yes, we fully implemented the amendments
and continue to ensure that our the next stage of the hospital’s funding, fundraising plans and
May 2018. required to be General Data Protection
funding streams meet the most redevelopment programme financial targets for the next
Regulations (GDPR) compliant. These
urgent needs of the hospital. expected later in 2019. A joint three to five years, informed by a
practices are now embedded across
Hospital and Charity team has decision on the next phase of the
the organisation and compliance is
been established to help prioritise hospital’s redevelopment.
continuously monitored.
projects for the charity to support
Complete implementation and Yes, implementation is complete with all and ensure charity funds are used
commence optimisation of our supporter GOSH Charity data transferred across to the to drive the largest impact.
database system. new system and Sparks data in progress. We
are now focusing on resolving any issues and
In 2019/20 we’ll also launch and enable our new innovation team, who will identify opportunities and embed
simplifying processes.
innovation in our ways of working.
12 13
Impact Report 2018/19 Impact Report 2018/19
Pioneering research
We believe the key to improving the lives of seriously ill
children is finding the treatments of tomorrow, today. This
year we’ve invested £7.4 million* into more than 80 research
projects, supporting world-leading scientists to offer children
around the globe the chance of a better future.
Enzo is seven years
old and he’s currently
receiving treatment
as part of a clinical
research trial at GOSH.
He loves playing on
his games console and
superheroes – he even
has special Batman shoes
that light up!
* See page 11 for details
14 15
Pioneering research Impact Report 2018/19
Research at a glance In October 2018 Professor Paolo De
Coppi’s team unveiled the world’s
first functioning oesophagus grown
in the laboratory and successfully
transplanted into mice. The research,
supported by GOSH Charity, has
the potential to change the lives
of children with oesophageal
atresia, a condition that leaves the
oesophagus disconnected from
the stomach.
5 12 £552,000 “For Hudson,” says mum
Nicola, “an entirely
surgeries to repair spina bifida research projects funded across invested in early stage research new, functioning food
performed while the child was the nation through this year’s at GOSH, supporting world-class pipe would be a game
still in the womb. Thanks to you, £2.1 million joint national call with scientists to turn their ideas into
we were able to help bring this Sparks,, from pioneering gene life-changing treatments. changer. It would give
incredible service to the UK for therapy for children with difficult- him a sense of normality,
the first time. to-treat epilepsy to creating so that he can enjoy
superpowered immune cells to
treat childhood tumours. his life as fully and
independently as any
other child. We’re excited
and hopeful to see where
this research goes.” Hudson, age two, with his brother, Hank
“Having laboratory research linked so closely
with clinical care on one site is exceptional. It’s an
opportunity to rapidly translate ideas into results
that will benefit children. I always had a real
ambition to work here one day. GOSH is a global
centre of research and clinical activity for seriously What's next? —— We’ll work closely with global experts in childhood heart
ill children. And the atmosphere is extraordinary. conditions to identify areas where our funding will make the
most difference to children with serious heart problems.
There is particular attention given to the wellbeing
of young patients that goes beyond just medical —— Together with Sparks and in partnership with research
care. I’m so pleased to be here.” charities, we’ll make up to £2 million available for pioneering
child health research projects across the UK.
Dr Giovanni Baranello, GOSH Charity Senior Clinical Lecturer in
Neurosciences, who took up his post in January 2019. Dr Baranello, —— We plan to recruit an early-career researcher with the
whose role is part-funded by Muscular Dystrophy UK, will support potential to become a world-leading childhood cancer
groundbreaking research and clinical trials into muscle-wasting researcher, finding the treatments and cures of tomorrow.
conditions like Duchenne muscular dystrophy.
16 17Pioneering research Impact Report 2018/19
Pushing forward new treatments
for life-threatening cell disorders
Research takes time. It all starts in the laboratory, where researchers
gather vital evidence to show a new test or treatment could work.
You help us to invest in this crucial stage, ensuring the most promising
ideas get off the ground. This includes research into lysosomal storage
disorders (LSDs), conditions that leave the body unable to break down
certain molecules, leading to a toxic build-up. There are currently no
cures for LSDs and, tragically, many children lose their lives at an early
age. Your support is helping to push promising new treatments through
the essential stages of development from lab bench to bedside,
ensuring they reach children as quickly and safely as possible.
Bench Bedside
Idea Lab research Clinical trials Approved for use Patient care
Clinical trials: In 2014, we awarded funding The Sanfilippo The project was successful, “GOSH Charity’s funding helped us, at an
Sanfilippo syndrome to leading Sanfilippo sydrome syndrome trial will putting the team in an ideal
Funded in 2014/15 researcher Professor Brian Bigger be one of the first
position to apply for grants early stage in the project, to prove that the
clinical trials
at the University of Manchester, to use state-
from larger funders. Together idea had legs. It was undoubtedly pivotal
Sanfilippo syndrome is a rare through the GOSH Charity national of-the-art gene with Professor Rob Wynn and Dr in getting us to where we are today —
childhood LSD, caused by an call. His team aimed to develop and cell therapy Simon Jones from the Manchester
error in DNA — the body’s built-in a new, curative treatment for manufacturing University Hospitals NHS seeing children with Sanfilippo syndrome
instruction manual. This error children with Sanfilippo syndrome. facilities in the
new Zayed Centre for
Foundation Trust, they were able get access to what could be a life-saving
leaves the child’s body unable to The approach – known as stem Research, funded by
to licence the therapy and win an treatment. It’s fantastic to witness, and the
break down a compound, which cell gene therapy – would involve GOSH Charity. additional £2.6 million grant from
builds up in cells and causes taking blood stem cells from the Orchard Therapeutics to cover families are so excited to have some hope.”
damage to the brain. It causes child, modifying the cells in a all remaining lab work needed
progressive dementia, followed laboratory to correct the genetic to take the treatment to clinical Professor Bigger
by the loss of the ability to walk mistake, then reintroducing the trial. As we write this, the team is
and swallow. Children with cells back into the patient. preparing to launch a world-first
Sanfilippo syndrome sadly don’t Our funding allowed the team clinical trial, working closely with
live past their mid-twenties and to develop a modified virus that Professor Adrian Thrasher and
there are currently no effective could deliver the corrected cells colleagues at the ICH and GOSH.
treatments. The condition affects back to the patient and show
around 100 children in the UK, the technique was safe through
and over 1,000 worldwide. laboratory testing.
18 19Pioneering research Impact Report 2018/19
Lab research: the gates’, so we can flood the Abhinav is 11 years
Krabbe disease brain with extra blood stem cells. old. While he’s at the
GOSH Clinical Research
Funded in 2018/19 Once in the brain, those cells will
Facility for treatment,
become microglial cells and clear he passes the time
Krabbe disease is a rare LSD that up as much of the toxic build-up by catching up on his
causes most affected children to as possible. We’ll do this in the maths homework.
lose their lives within two years. lab and in mice, to ensure it’s safe
This year, you helped us fund an before it’s tested in patients.
innovative project in partnership
with Krabbe UK, to improve “Krabbe disease is our focus,
treatments for children with this because these children
devastating disease. desperately need an effective
treatment. But the principle Tom, pictured aged one.
“Krabbe disease affects many could be applied to any LSD
parts of the body,” says lead that causes brain damage To be told there was no medicine,
researcher Dr Sara Benedetti, and possibly, in the future, to and no way you could fight the
based at the ICH. “In particular, neurodegenerative diseases like disease; I think that was one of
the toxic build-up causes brain Alzheimer’s or Parkinson’s.” the most frustrating things.
cells to degenerate, so children
experience seizures, lose Tom’s story “One of the most shocking
their sight and hearing, and Tom's Dad, Andrew, says: “Tom things for me was that, as the
progressively and relentlessly was born at Hull Royal Infirmary disease progressed, Tom couldn’t
lose all of their faculties. on the 28th of July, 2012. He was a do anything for himself. Week
very happy, very healthy little boy. by week he lost the ability to
“We know that special cells in Then when he got to about six do something. I actually have
the blood – known as blood or seven months old, he started a picture of Tom’s last smile. I
stem cells – can reach the brain crying more. He started going remember it because the next
and turn into another type of into spasms and his whole body day he couldn’t do it.
cell known as a microglial cell. would go stiff.
Those cells are great at clearing "That Saturday, his tummy
up the toxic build-up, so they “We took him to the doctor and stopped working so the doctor
could prevent the devastating he said he was admitting him to took us aside and told us he
brain degeneration we see in the hospital. Three weeks later, probably had two or three
these patients. we got the news that he had a days left. But Tom liked to prove
type of leukodystrophy – a group doctors wrong. He survived for
“The idea of my project is to of genetic disorders that affect another ten days and died on 9
get as many of these blood the central nervous system – December 2013, aged 17 months.
stem cells into the brain as called Krabbe disease.
possible. But because our brain “The research that Sparks and
is so precious, it is protected GOSH Charity are funding for
by a ‘gateway’ known as the “This meant that from Krabbe disease is incredibly
blood-brain barrier (BBB). The that point, we had important. We know the enzyme
BBB determines which cells or a maximum of two that is missing in children that
molecules are allowed in or out causes the disease, but we don’t
of the brain. My aim is to modify years with our son. yet know how to do anything
that barrier to temporarily ‘open I just felt numb. about it.”
20 21Pioneering research Impact Report 2018/19
Supporting child health We're currently funding research at:
research across the UK 1. Great Ormond Street Hospital
1. University College London (UCL)
Between 2011-2019,
Each year, GOSH Charity and Sparks aim to make around GOSH Charity and 1. UCL Great Ormond Street Institute of
£2 million available for researchers across the UK who are Sparks funded Child Health
150
working to improve child health. At this very moment, the 1. UCL Institute for Women’s Health
nation’s brightest minds are working hard to turn their 1. UCL Institute of Neurology
ideas into the treatments and tests of tomorrow. This 1. UCL School of Pharmacy
projects at 47
map shows all the active national call projects that you’re institutions. 1. Kings College London
helping us to fund.
1. Queen Mary University of London
This year, as part of our £6.9 million investment in child 1. Homerton
University Hospital NHS
health research, we committed an incredible £2.1 million Foundation Trust (London)
to fund projects across the UK. This included two grants 2. University of Manchester
awarded in partnership with smaller medical research 3. Oxford University Hospitals
charities: Krabbe UK and Dravet Syndrome UK. Thanks 4. University of Southampton
to your support, the national call is the largest funding
5. Keele University
opportunity in the UK dedicated to child health research.
6. Plymouth University
7. Sheffield Hallam University
8. University of Birmingham
8. Birmingham Children’s Hospital
9. University of Cambridge
10. University of Bath
2 11. Liverpool John Moores University
11 7
5
“GOSH Charity, Sparks and other
charities like Krabbe UK partnering
together is absolutely fundamental to 8
9
researchers like me getting funding.
It means there is a pot of money for
clinicians and scientists across the UK 3
to access and use to push forward new
1
treatments. I can’t stress how vital that
10
is to the future of child health.”
Dr Sara Benedetti, funded through the 2018/19 GOSH 4
Charity and Sparks national call, with partner funding
from Krabbe UK.
6
22 23Pioneering research Impact Report 2018/19
From lab to clinic: the story of spina bifida vitamin – inositol, also known as
Vitamin B8 – might help. It had
been involved in one of the
hospital’s most incredible clinical
Chiari II: A life-threatening
symptom of spina bifida
a bigger positive effect than advances this year – completing
we’d expected.“ the UK’s first pioneeringsurgery Around 90 per cent of children
in the womb for spina bifida. with the most severe form of
spina bifida have a life-
It took the best part of ten years The procedure involves closing
threatening brain defect known as
to plan and conduct a pilot study exposed spinal tissue without Chiari II. It causes damage to
to test their finding in women. delivering the baby, and has been nerves that control breathing,
Over that period, Professor proven to help improve the lives leaving children at risk of
Copp’s team studied 99 women of children born with spina bifida. severe disability or even death.
Supported by GOSH Charity and
who had experienced a previous This groundbreaking surgery
Sparks funding, Professor Copp’s
pregnancy affected by a neural was made possible thanks team is investigating why Chiari
tube defect. to an experienced 30-strong II is so commonly associated with
multidisciplinary team and a spina bifida and whether it could
Of the 99 women, 57 went on pan-European collaboration. be prevented.
to have pregnancies during the
study period. Three were affected Since the team’s first UK Laxmi says: “It was a difficult five
by neural tube defects, all in procedure in summer 2018, weeks, but there were fantastic
women who took folic acid alone. several more have been nurses that took really good care
No pregnancies in the group who performed and, excitingly, NHS of us both. We’ve been home for
took folic acid and inositol were England has recently decided to 18 months now and Tulsi is doing
affected by a neural tube defect commission the surgery for spina really great. She’s crawling and
and no adverse effects were bifida as an NHS service. standing up, and she loves going
Tulsi, age two, and her mother Laxmi reported in any of the women or to play group.
their babies. Your support allowed us to fund
fetal surgery expert, Professor “We know she’ll face challenges,
Every year, around 700 The most common neural tube Professor Copp says: “It suggests Jan Deprest, who came to GOSH but we’re not focusing on the
pregnancies in the UK are affected defect is spina bifida, where the that women who have had one from Leuven, Belgium, to train the negatives. Tulsi will need to be
by neural tube defects like nerves and membranes of the pregnancy affected by a neural GOSH team. We helped to fund monitored for the rest of her life
spina bifida. Ongoing research spine are left exposed as the tube defect may be best advised the first 10 surgeries, allowing the so we come back to GOSH for
supported by GOSH Charity and baby develops in the womb. It to take both folic acid and team to show that the procedure regular appointments for physio
Sparks is helping to develop can cause paralysis of the lower inositol when planning their next is possible in the UK. Our funding and to check her brain, bladder
innovative new approaches that body, leading to urinary and pregnancy. This should of course also ensured free-of-charge, and legs. We take comfort in the
could one day save these children bowel control problems, as well be done under supervision of nearby accommodation was fact that she’s in the very best
from a lifetime of complications. as fluid build-up on the brain. Professor Andrew Copp their GP or obstetrician.” provided for mothers undergoing hands at GOSH.
Surgery after birth to repair the the surgery.
In the earliest weeks of defect cannot always alleviate From the beginning The next step for the team is “It’s incredible what doctors can
pregnancy, a layer of cells on these symptoms. More than a decade ago, to conduct a full clinical trial to Meet Tulsi, age 2 do now, like the new spina bifida
the back of the embryo curls Professor Andrew Copp – then a confirm the beneficial effects of During her pregnancy, Tulsi’s surgery at GOSH that repairs
up like a sheet of paper and Andrew Copp is Professor of medical student at Guy’s Hospital inositol. “It’s nice to see something mum Laxmi was told that her the baby’s spine while it’s still in
closes to form the neural tube. Developmental Neurobiology – began working on a laboratory that you’ve done for years and baby girl might be paralysed, the womb. It’s just fantastic. It
That tube will ultimately mature and Head of the Newlife Birth model of spina bifida. “We knew years go into clinical practice,” need a tube on her brain to gives families another treatment
into the baby’s brain and spinal Defects Research Centre at the that folic acid supported a baby’s says Professor Copp. “I’m very relieve pressure, or worse, choice, which is so important.
cord, programming the baby’s ICH. He has made it his life’s work healthy growth,” he says, “but pleased with the outcome after not survive. When you’re receiving so much
every thought and movement. to understand why children are some individuals didn’t seem this long period of research.” bad news, it’s really encouraging
But sometimes, this process can born with neural tube defects like to respond and still went on to Tulsi’s best chance at life was to to hear that, with surgery, your
malfunction, causing a neural spina bifida, and what could be develop neural tube defects. We Treating spina bifida in the womb have delicate spinal surgery at baby has a better chance of
tube defect. done to prevent them. wanted to see whether another Professor Copp’s team has also GOSH within hours of being born. smiling and even walking.”
24 25Impact Report 2018/19 Impact Report 2018/19
Rebuilding and refurbishment
We believe in creating future-proofed hospital wards and facilities.
These spaces should allow GOSH to adapt to changes in medicine
and treat more patients in functional, flexible surroundings that help
children recover more quickly. This year, we committed £54.1 million*
to creating child-centred spaces for GOSH patients and families of the
future, including a transformative new centre for children with sight
and hearing loss and the Zayed Centre for Research: a facility that will
bring pioneering research and care under one roof.
Lola, age 11, has
cystic fibrosis and
comes to GOSH every
six weeks. During her
stay she loves to
draw on the walls and
windows. She is also
an avid reader and
has just finished the
entire Harry Potter
book series.
* See page 11 for details
26 27Rebuilding and refurbishment Impact Report 2018/19
Rebuilding and refurbishment at a glance This year we marked one year
since the completion of the
Mittal Children’s Medical Centre,
with the opening of the Premier
Inn Clinical Building. Ward
Manager Philomena Cosgrove’s
team on Nightingale Unit sees
the benefits of the new facilities
every day as they care for
patients undergoing procedures
under anaesthetic. They held a
In October 2018 we kicked off construction of the GOSH Sight
and Sound Centre, supported by Premier Inn. This specialist
outpatient facility is due to open in 2020 and will include quiet
9 special party to celebrate.
waiting spaces, a sensory garden and interior design tailored children with sight and/or
to the needs of children with sight and hearing loss. hearing loss, along with their
families, gave their insight on
patient-friendly design, helping
to shape plans for the new ”We’ve gone from having eight beds to having
specialist centre at GOSH. 18. Being able to admit more patients really
takes the pressure off inpatient wards, who were
having to use their own beds when we didn't
£415,000 have space. Families tell us it's lovely to come
back to the same ward after their procedure and
of work completed to improve the be looked after by the same nurse throughout
mortuary space at GOSH, giving the day. The staff are much happier here too. It’s
families as much comfort, privacy
and dignity as possible at the most
a lovely environment to work in.”
difficult time of their lives.
“I have a cochlear implant and, when I go
to the hospital, I find it hard to understand
120 What's next? —— We'll celebrate completion of the Zayed Centre for Research,
an incredible new facility open from late 2019 that will bring
what people are saying because it’s usually children attended the opening patients and researchers together under one roof.
of the Disney Reef, a colourful,
really loud. It can make me feel a bit underwater-themed outdoor —— In early 2020 we plan to celebrate the opening of the new
annoyed or upset. But having my family and play area where families can Khoo Teck Puat iMRI suite. The facility will allow surgeons at
friends with me really helps. My favourite take some time away from the GOSH to capture images of a child’s brain mid-operation,
ward environment. helping to reduce the need for repeat surgery.
sound is probably birds in the morning, so
I’m really looking forward to seeing the —— We will progress plans for a transformative rebuilding project
garden in the new Sight and Sound Centre!” designed to improve the hospital environment and imaging
facilities for children with cancer.
Paris, age 13.
28 29Building on excellence
During 2018/19, we continued both outpatient facilities and
to support the construction of laboratories under one roof, The main laboratory
the Zayed Centre for Research, helping to fast-track new tests, houses 140 benches
equipped for cutting-
a major new facility designed treatments and cures to the
edge child health
to enhance the world-class children who need them most. research. Above, the
research and care provided words 'together we can
across Great Ormond Street The centre was made possible do so much' appear
Hospital and its research thanks to a transformational in an artwork by
Mark Titchner, with
partner, the ICH. Further gift from Her Highness Sheikha
interweaving pathways
realising their vision for a truly Fatima bint Mubarak, the wife of to represent the
bench-to-bedside approach, the the late Sheikh Zayed bin Sultan collaborative vision
new centre will bring together Al Nahyan. for the building.
30 31Rebuilding and refurbishment Impact Report 2018/19
to develop a stronger information about the genetic UK to be treated with gene is revolutionising the way we
understanding of disease- cause, Professor Kurian was therapy for severe combined approach medicine. Scientists at
causing genes but also to create able to identify a pioneering immunodeficiency (SCID). The the Zayed Centre for Research will
transformative new therapies. technique that could help some treatment was delivered as part use a new state-of-the-art facility
patients. Known as deep brain of a groundbreaking research to transform cells from a patient’s
Meet Katie, age 14 stimulation, the technique uses trial led by world-leading own hair or skin into stem cells,
Katie has a rare movement small wires to stimulate the researchers Professors Bobby which have the unique ability to
disorder called dystonia, which movement centre of the brain. Gaspar and Adrian Thrasher. turn into almost any other kind of
causes uncontrollable muscle Since then, more than 70 children cell, such as liver or nerve cells. As
spasms that force her body into Katie is one of a small group have been treated with gene these cells hold the same genetic
twisting, repetitive movements. of children to have received therapy for immune system information as the person they
It has a huge impact on her daily deep brain stimulation through disorders at GOSH. came from, they can be studied to
life and can be very painful. Professor Kurian’s work. understand that patient’s illness,
Katie’s mum Sarah remembers Encouragingly, all 10 have shown Regenerative medicine or to test which treatments might
her difficult early years: “The considerable benefit, with Regenerative medicine is defined work for them.
Katie, age 14 type of dystonia that Katie was some regaining or significantly Professor Bobby Gaspar as any treatment that restores
diagnosed with meant that she improving their independent normal function to tissues or In the future, researchers hope
was declining. She used to be walking and hand and The future of medicine organs, with an emphasis on to use these cells to grow new
able to ride a bike, skip and hop arm movement. harnessing the body’s natural tissues or organs tailored to
but she lost the ability to do all You’re helping us fund a world- ability to repair itself. each individual. This could have
these things over the years.” Cell and gene therapy class team of gene therapy huge implications for patients at
researchers. They’re working hard
The Zayed Centre for Research Cell regeneration is a rapidly GOSH, from saving a child’s sight
to translate the success of gene
Katie’s problems began at the will be home to the largest therapy in treating children with
growing area of medicine to treating children with complex
Scientists based at the Zayed age of two, but it wasn’t until dedicated clean room facility of immune system conditions to other and new stem cell technology nerve disorders.
Centre for Research will focus she was referred to GOSH at its kind in Europe. In these labs, disease areas.
on three key areas of cutting- the age of seven that she finally researchers will modify cells
edge science: got a diagnosis. Her family taken from patients to create
met Professor Manju Kurian, therapeutic materials, which can
DNA and data Paediatric Neurologist and UCL then be given back to patients.
Deep in the centre of our cells, clinician scientist at GOSH. This incredible capability could
our genes are written in the lead to the rapid development of
form of DNA — the instruction For the past seven years, innovative new treatments, from
manual for life. Molecules within Professor Kurian has been correcting the genetic mistakes
our cells are constantly ‘reading’ working to understand what responsible for muscle-wasting
this rulebook to keep our bodies causes different types of diseases, to modifying immune
functioning. dystonia. Her team took DNA cells to target cancer. What else will be in the Zayed Centre for Research?
from patients and, where
Within the Zayed Centre possible, from their parents Gene therapy involves modifying —— Around 500 academic and —— A dedicated suite for flow —— The centre will have an
for Research, scientists will and siblings. “We found an faulty genes so that they can clinical staff from GOSH and cytometry: a method of outpatient facility with 21
investigate how certain genes overlapping region of DNA,” work correctly. This targeted the ICH, with more than 160 rapidly identifying and consultation rooms and eight
in the manual are miswritten or explains Professor Kurian. “It approach not only has the laboratory spaces. sorting different types clinical investigation rooms.
misread, causing rare childhood became clear that the faulty potential to cure a disease, but of cells. This technique
diseases. The centre’s cutting- gene causing the condition must could also mean fewer side —— A cardiac research suite has multiple uses,
edge genomics facility will house be in that region.” effects than other, more invasive where researchers can including diagnosing and
incredible technology with the treatment options. produce 3D models of monitoring children with
potential to ‘read’ every gene in Unfortunately, there’s currently the heart – an invaluable blood conditions such as
the body: the entire rulebook. no cure for most forms of In 2001, GOSH patient Rhys resource for investigating immune system disorders
This will not only help researchers dystonia but, thanks to this new became the first child in the new treatments and devices. and leukaemia.
32 33Rebuilding and refurbishment Impact Report 2018/19
A child at the
Supporting GOSH's incredible staff GOSH staff nursery
enjoying some watery
play activities.
All hours of the day and night, was quite anxious about bringing
hospital staff are hard at work, him to nursery. But the staff are
delivering the best possible brilliant with him and the setup
care for children and families is fantastic.
at GOSH. They are passionate,
diligent, talented and resilient. “I saw the old building and this
Many of them are parents is worlds apart. The space flows
themselves. You’re supporting and is designed so well for the
these extraordinary people by children’s needs. The fact the Axel
helping us to provide nearby is practically on site means I can
accommodation, specialist drop him off just before I start
training and a new staff nursery, work and pick him up straight
just around the corner from away when I need to. I think
the hospital. The nursery is I’d worry about him if I worked Mariesa and Axel
providing affordable, reliable further away. Knowing he’s in a
and trusted childcare that lets safe, structured environment so
hospital staff focus on the other close by is reassuring and really
special children in their lives: helps me focus on my work at
GOSH patients. the hospital.”
Did you know?
Mariesa Taylor-Allkins, “Since he started nursery, Axel’s You help us
Ultrasonographer and mum development has really come on. to subsidise
nursery fees for
to Axel His talking, eating, everything.
hospital staff on
“I wouldn’t be able to work if it He loves it. Some days he doesn’t lower incomes,
wasn’t for the GOSH staff nursery. want to come home with me! letting them
There are no nurseries available They do messy play activities focus on their
near where I live and my working that would be difficult at home vital work at
GOSH supporting
hours mean it needs to be so and take him out every day in the
seriously
flexible. Axel is my first child, and I little garden.” ill children.
34 35Rebuilding and refurbishment Impact Report 2018/19
they can spend a bit more time when she goes to a nursery back
together during their commute. home in Sheffield, she’ll find it
That’s important. easier to settle in.
“Because staff feel more relaxed, “Another child whose brother was
they’re less distracted in their having treatment for cancer came
role. We hear that first hand, to us for about three months. I
but there’s also a lot of research think it was a relief for the parents,
about staff engagement and because it’s such a difficult thing
the difference it makes to for them to be by their child’s sick
Caroline patient care. The hospital can bed while their other young child
be a very difficult and stressful needs attention too.”
place to work, so it’s important
Caroline Brown, we do what we can to support Sima Patel, Nursery Manager
GOSH Occupational our people. “We have a lot more space now,
Development Manager compared to the old nursery.
“When I speak to hospital staff “If your child is settled, you’re It means we can have several
dropping their kids off, I can see settled. The nursery is helping different activities in one room.
clearly how much they appreciate GOSH keep extraordinary people That empowers the kids to
the nursery. One side of it is just who are the very best at what make choices about what they
having a nursery attached to they do. do and lets them socialise in
their place of work. We’re very bigger groups. It’s all vital for
aware how lucky we are to have “Occasionally there are special child development – learning
that, especially in central London. situations where we can step in how to interact with others, how
It’s only affordable for NHS staff and help GOSH families too. Last to weigh up options and try new
on lower incomes because prices year we looked after a patient things. Having more space also
are subsidised, thanks to GOSH who had been in the hospital means we can add activities that
Charity. The other side is, now since birth. She hadn’t had support physical development,
we have the new nursery, staff the same experience as other like motor skills. In the baby room,
are incredibly grateful that they children of socialising in a nursery for example, we have a massive
can leave their child in such a environment, so when she turned canvas on the floor where six little
lovely place. The day we opened, five, she started coming here ones can do body painting. We’ve
we asked parents to write one once a week. Hopefully it means also got a climbing wall!"
word on a flipchart to describe
what they thought. It was a such
a lovely thing, we didn’t get any
negative comments at all.
“Parents tell me the nursery
has made such a difference to
them being able to come back
to work, and to their work-life
balance. GOSH is a minute’s
walk down the road, so they feel Opposite: The new climbing wall
comfortable knowing they can be at the GOSH staff nursery
here at a moment’s notice if their Right: Children play peek-a-boo
child needs them. It also means with the camera
36 37Impact Report 2018/19 Impact Report 2018/19
Faridat is six years
old. She comes to Safari
outpatients at GOSH with
her mum and grandma to have
treatment. While she’s at
the hospital, she enjoys
playing with the toy
kitchen and doing arts
and crafts in the playroom.
Child, family and staff support
Caring for seriously ill children is about more than just medicine.
From psychological support to family meal vouchers, the right
support can be hugely beneficial to their recovery, mental health
and long-term wellbeing. This year you’ve helped us invest
£5.1 million* in raising children’s spirits, easing the burden on
families, and supporting staff at the hospital.
* See page 11 for details
38 39Child, family and staff support Impact Report 2018/19
Child, family and staff support at a glance “Our support can help children
‘see the bigger picture’. That
can really help to reframe
their understanding of what’s
happening, making them feel
calmer and more at peace
with the situation. We also
speak to GOSH staff, who can
deal with upsetting situations
375 2,000 12 every day. We help them
understand cultural factors or
family dynamics that might
Rev Jim Linthicum, second from left, with the Chaplaincy service
children were supported by families stay in our GOSH kidney transplant recipients
the Play Team to overcome accommodation each year. This took part in the 2018 British allow them to support GOSH
anxieties associated with year we committed to refurbish Transplant Games, an annual families more effectively.”
medical procedures, helping some of our older facilities, to sporting event that brings
them get the vital treatment ensure families have access to transplant patients together, Rev Jim Linthicum leads the hospital’s Chaplaincy
they need. The Play team comfortable and welcoming supports their return to fitness and Service, a support team funded by GOSH Charity
interact with many more facilities just minutes from their promotes organ donation. GOSH and hugely valued by both families and staff.
patients and families on wards child’s bedside. renal competitors are supported
across the hospital every day. by funding from GOSH Charity.
“The Play team at
GOSH turns negatives
into positives and add
some giggles when
there are difficult
things like blood tests. What's next? —— By funding the refurbishment and running of parent
accommodation, we’ll ensure families at GOSH can stay
They always help by in comfortable surroundings just minutes from their
distracting you with child’s bedside.
fun things and make —— We’ll continue to fund vital services that support children and
being at hospital not their families through difficult times. These include the Play
so bad.” team, GOSH Arts, meal vouchers, children’s parties and the
Patient Advice and Liaison Service.
Emily, age eight.
—— We’re exploring the possibility of funding a new ‘Learning
Academy’ at GOSH, to support staff with the specialist
training required to care for children with the rarest and most
complex conditions.
40 41Impact Report 2018/19
Families can experience problems and regularly eating away
ranging from emotional and from home.
mental health issues, to a
The Chaplaincy team has around total family breakdown, as We provide vouchers to families
well as significant financial who need financial support and
3,800
interactions with patients and
consequences. Without support,
some families at GOSH would not
be able to cope.
mothers who are breastfeeding.
Children’s parties
families each year. We can’t cure every child at
You help us to fund a dedicated GOSH, but we can try to brighten
Social Work team at GOSH. The their day. You help us fund
1,172
children and their families
team provides support for issues
including the mental health and
emotional wellbeing of parents
children’s parties throughout
the year, from our Easter eggs-
stravaganza complete with a
were supported by the Social and children. The team also chocolate fountain and fluffy
Work service in 2018/19.
provides practical and emotional rabbits, to our spectacular
help before, during, and after the Christmas party with presents,
death of a child. performances, activities and
7,236
meal vouchers were provided to 412
Addressing inequality
There is now overwhelming
Santa himself.
These parties are extremely
breastfeeding mothers in 2018/19. evidence linking poverty with important to families at GOSH,
Gabriel is eight years old and has been coming to GOSH every week since he was diagnosed with acute lymphoblastic leukaemia – poorer health. We are committed giving them something to look
a rare type of childhood cancer. He loves singing and tickles from his mum. to supporting disadvantaged forward to and a semblance
families, because all children of normality during the most
deserve the same hope for a difficult times in their lives.
Beyond the medical sleep when their child is seriously
ill. The hospital’s newest clinical
better future.
Play
The families who come to GOSH Spiritual care This year, we funded and buildings, funded by GOSH Your support helps us to fund Play isn’t just fun, it’s a vital part
are incredibly resilient, but we Behind the hospital’s main unveiled a new multi-faith room Charity, have space for a parent a specialist welfare rights of a child’s development. At
believe a little support can go reception is a small oasis of for prayer and reflection. The or carer to sleep by their child’s service at GOSH, delivered by GOSH, it’s even more than that.
a long way. You help us fund calm, once described by Oscar room is open to families and staff bedside. But for families with Camden Citizens Advice Bureau The GOSH Charity-funded Play
services that ease some of the Wilde as the ‘most delightful at GOSH, as well as ambulance children in intensive care, where in partnership with the hospital. team uses play to ease a child’s
stress on families while their private chapel in London’. With drivers and paramedics from they can't stay, we also offer The team gives advice on a anxieties about being in hospital,
children are in hospital. only eight child-sized pews, the across the capital who drop off or nearby accommodation, allowing range of issues, from applying for to distract them from scary
ornate Victorian GOSH chapel is collect patients. parents to be at their child’s benefits and managing debts, to or uncomfortable procedures,
There’s increasing evidence that a place of reflection, grief, hope, bedside in minutes. You help us to homelessness and immigration. and help them recover more
a holistic approach to care – and comfort. Family accommodation fund this family accommodation quickly by reducing stress. The
offering support beyond medical Imagine suddenly feeling like just a short walk from the Meal vouchers team develops activities to help
care – can help children recover While the chapel is a Christian you might be burdened with hospital. When a child is ill, families often children feel in control, from
more quickly, avoid traumatic place of worship, the hospital’s the cost of staying in a central need to reduce their working practising procedures on a teddy
experiences, and reduce the risk Chaplaincy service – funded London hotel for months. No Family relationships hours, or stop working altogether. to choosing a flavour of lip balm
of associated mental health by GOSH Charity – caters to parent should have to worry Having a seriously ill child in They face increased costs such to personalise the smell of their
problems now and in the future. everyone, no matter their beliefs. about where they’re going to hospital is incredibly stressful. as travelling to and from hospital anaesthetic mask.
42 43You can also read
