A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17

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A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
A better
future for
seriously
ill children
STARTS
HERE.

Highlights Report
2016/17
                    Highlights from 2016/17 1
A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
2 Great Ormond Street Hospital Children’s Charity   Highlights from 2016/17 3
A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
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
A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
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 better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
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
A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
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
A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
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
A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
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
A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
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
A better future for seriously ill children - STARTS HERE. Highlights Report 2016/17
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 17
RESEARCH:
                                                     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 19
The 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 21
The 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 23
Reprogramming 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 25
How 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 27
MEDICAL
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 29
MEDICAL 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 31
Scanning 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 33
From 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 35
Viewing 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 37
The 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 39
CHILD 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 41
CHILD 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 43
GOSH’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 45
A 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 47
On-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 49
REBUILDING 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 51
REBUILDING 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 53
From 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 55
Five 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 57
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