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Hello from ECHO
WINTER 2021
READ INSIDE: A message from King's
College London
ECHO's new Children's Magazine How you can support
Update from Evelina London ECHO families in hospital
A message from Samantha Johnson, ECHO's Chief Executive Dear ECHO Members and Supporters, I wanted this newsletter to say 'at long last, ECHO is back to how we worked pre-COVID-19' - but the reality for us as a charity and everyone we work with is that we are still facing unique challenges and continuing to adapt to changing circumstances. Over the past year ECHO members have shown true resilience, offering peer-to-peer support, finding ways to continue supporting ECHO and reaching out to us for clarity and support. For the first time, we welcomed families treated by the Royal Brompton and Harefield NHS Foundation Trust and its network hospitals to our community - and as we grow we keep ECHO families' needs at the forefront of everything we do. The dedication of Team Cardiology at Evelina London and its network hospitals continues to impress me immensely. Together we developed the ECHO Excellence Awards, allowing you to send an award to any member of NHS staff - make your nominations at: echo-uk.org/excellence. This summer we also had the opportunity to be part of a special internal Team Cardiology Thank You event, which gave us a unique chance to say thank you to hospital staff on behalf of ECHO and the community we serve. On behalf of team ECHO I would like to thank our volunteers, who have adapted including joining online cardiac antenatal classes; managing ECHO's social media from across the world in New York and Singapore, and running the ECHO shop from home. We couldn't do what we do without you - and to those of you who are patiently waiting until face-to- face volunteering returns, we look forward to seeing you again. I want to remind you all, ECHO is open for business. We are working differently - but you can expect the same level of passion, professionalism and quality you have come to expect. With your help, we will continue to provide tailored help and support whenever you need it and continue to build relationships to better connect the children’s heart community.
ECHO's 2021 highlights In January we launched the ECHO Teens Virtual Film Club, a creative and fun online monthly club for young people with heart conditions and their siblings. It's not too late to sign up, find out more at: echo-uk.org/teens While many of us were staying at home, we were excited to collaborate with several scientists from the School of Biomedical Engineering & Imaging Sciences at King’s College London to host and run 12 weeks of creative online ECHO Happiness Hub workshops including sound therapy, origami and drawing! You can watch them at: echo-uk.org/happinesshub ECHO continued to support the Psychology team at Evelina London to run virtual Parents Groups for parents of children and young people with heart conditions, speaking to parents and facilitating wellbeing spaces. We will be sharing details of upcoming sessions soon, head to: echo-uk.org/events This year our Chair Jane Ward is stepping into a trustee position after steering ECHO through its toughest time in our 38 year history, during her three year tenure as Chair. We want to thank her for her excellent service, and are delighted to welcome Steve Wood as the new Chair of ECHO - you can find out more about him later in the newsletter. We launched a very special online event - Breakfast with Alpacas - a monthly Facebook livestream where the whole family are invited to say hello and meet the fluffy alpacas on the Lower Bush Farm in Kent. You can ask questions and get to know them, plus enter our alpaca competition! Find all the upcoming dates at: echo-uk.org/alpacas
You are invited to ECHO's online
community event, Opening Doors
ECHO is delighted to host Opening Doors – a free online event for
parents, carers, families and the wider ECHO heart community on
Saturday 27 November from 2-3.30pm where we will hear from
medical, scientific and ECHO staff about their experiences during
the past 18 months, and as we look to the future together.
At ECHO we know that for many families the doors to our homes
have remained closed this past year, while medical professionals
have continued providing their essential services. Opening Doors is
an opportunity to hear from specialists at Evelina London and
Kings College London about the important work which has
continued, while offering an opportunity for us to connect virtually.
Join us to hear from: Head of Cardiology, Dr Aaron Bell; Paediatric
and Fetal Cardiology Consultant, Dr Owen Miller; Consultant
Paediatric & Adult Cardiologist, Professor Shakeel Qureshi and Lead
Nurse for Paediatric Cardiology & CHD Network, Lynda Shaughnessy
- plus other specialists.
The event will be livestreamed online and the ECHO team will be
answering your questions in the comments throughout, so join us,
say hello and leave your questions or feedback in the comments.
We would love to hear your thoughts!
We'll also take part in a calming
workshop together led by a
creative professional who will
show us how to make a beautiful
wreath! We hope you enjoy the
event as much as we are looking
forward to sharing it with you.
RSVP at:
echo-uk.org/openingdoors
RSVP and we'll send you a link to watch the event
on the day, PLUS you will receive a wreath 'kit list'
of what you'll need if you want to make your own.
ECHO's CHD Network Photoshoot In September this year, we organised a photoshoot in partnership with the CHD Network at Guy’s & St Thomas’ Hospital NHS Foundation Trust, Evelina London and the Royal Brompton and Harefield. As part of an overarching goal to represent the diversity of our community, we captured photographs of families at every stage of their journey with different heart conditions, additional health conditions, learning or physical disabilities and additional needs, to use in communications materials. We're delighted to share some of those photos with you now, and look forward to publishing more of them across our resources. Thank you so much to everyone who took part - we had a fantastic day seeing you all in person. We look forward to working with ECHO members on other projects like this in future - stay tuned!
Meet Eddie ECHO's new friends
This year ECHO have worked hard to expand the services we
offer to children and young people staying in hospital, and have
developed an exciting new Children's Magazine.
The magazine, called Eddie ECHO & Friends, will be given to
every child with a heart condition when they stay in hospital. It
is packed with activities, puzzles and jokes to help keep
children entertained and offer some distraction while they
recover from surgery or treatment. Each magazine also comes
with 24 fun stickers. We hope they love it (and you do too!)
Hi I’m Remi! I’ve been
in hospital to look
after my heart before.
I am excited to meet
you!
Hello! I’m Sunny
and this is my little
sibling Koko. Koko
has to stay in
hospital sometimes
too.
ECHO fun
e fa
di
ct
Ed
s
Hello! I’m Eddie and I
am so happy for you to
meet my friends.
Here are some things
you might not know
about me!
Eddie has been ECHO's mascot for many years, he's part of
the family. You may have met him at an ECHO event!
Eddie has his own song - and a book!
Eddie has run the London Marathon a few times (wow!)
Eddie has collected monies for ECHO at London train stations!
An Eddie ECHO teddy is in every ECHO Cares pack given to
inpatients at the Evelina London
You can also receive your own cuddly Eddie ECHO by
ordering one on the ECHO shop at: echo-uk/org/shop
We are thrilled to introduce you to Eddie's new friends Remi,
Sunny and Koko - three new characters who will join Eddie
ECHO across ECHO's magazine and feature in our other
resources and communications materials.
We hope together they will bring fun and comfort for children
in the ECHO heart community, at every stage of their heart
journey.
cky's Story Seeing Finn for the first time after
Vi
the operation was upsetting but
with such a sense of relief. However
when we got a call at 5am the
morning after to come to Evelina
London quickly as Finn’s “heart was
deteriorating” we were in complete
shock.
Finn was so unwell that his kidneys
started to shut down and he was
placed on dialysis. Thankfully, over
the next 24 hours Finn improved
At our 20 week scan, the massively and at 9 days old we left
sonographer referred us to see a intensive Care, this was the best
specialist Cardiology Sonographer as feeling ever!
there were 'aspects' of Finn's heart
she couldn't see. The specialist Finn spent the next 9 days
confirmed that Finn had a condition recovering on Savannah Ward and
called ‘Transposition of the Great at 18 days old we got to take Finn
Arteries’ (TGA). We were so shocked home. Finn is now a curious and
and confused, neither myself or my very mischievous 18 month old, full
partner had ever heard of TGA. of giggles and love!
Due to the pandemic our original ECHO has been such a lifeline to us
birth plan and Finn's surgery was at home. Their Facebook group has
moved to Evelina London/St allowed us to get to know other
Thomas'. The wonderful midwives in parents in a similar situation. We
the Tower Team put us forward for recently attended the ECHO CHD
the ECHO antenatal class on Zoom. Network photoshoot with GSTT and
This was so informative and we met RBH - this was the first event that
other parents who were also we had attended, and it allowed us
expecting CHD babies and even met to meet other families and talk to
a family who were expecting a baby people that understand your ‘story’.
with TGA.
I got a quick cuddle once Finn was
born before he was rushed off to
NICU. At 12 hours old Finn had the
Balloon Atrial Septostomy, but
continued to struggle to stabilise the
oxygen levels in his blood and the
decision was made for Finn to have
the open heart ‘switch’ surgery at
four days old.
ECHO want to share your story, get in touch if
you have a CHD story to tell: hello@echo-uk.orgMeet Vashti, ECHO's Community Coordinator I have worked in and around the charity sector for around 18 years, at organisations focused on CHD, Transplantation and Rare Diseases. My passion is delivering high impact grassroots support to the patient groups I serve. Whether this be through formation of a new charity, campaigning or working with the clinical community to formulate best practice. This passion comes from being a parent of a child with CHD and experiencing the journey (she’s now 18!). Where possible I want to alleviate the isolation that is often felt by families when they are faced with managing everything that goes hand in hand with a medical condition. I have recently started my role at ECHO to deliver a new online Forum. The platform will facilitate peer-to-peer support between people going through similar experiences, and be a place to share updates and request information or emotional support in an accessible way. We are building a safe, moderated space which will sit within the ECHO website, with clear designated spaces for different topics, so that you will be able to find the exact support and information you need. You might be thinking - what about the ECHO Facebook Group? Social media platforms are great and we love our ECHO community on Facebook, and while the Forum won't replace what we already have, it will offer a greater level of support at a more detailed level. Given that ECHO will have full ownership of our own bespoke platform, we have an opportunity to fully grow it into the space that serves us best. I would be delighted to hear your thoughts and ideas on how we build the Forum in a way that provides exactly what you need, when you need it…you know this better than anyone. I am looking to work with a small focus group over the coming months, please drop me a line if you are interested in joining this. You can also be part of the moderation team as a volunteer, offering a guiding hand online. Full training will be offered and you will be well supported by the team at ECHO. Please contact me to find out more about these volunteering opportunities: vashti@echo-uk.org
Update from Aaron Bell, Head
of Cardiology at Evelina London
As the end of the year approaches it is natural to reflect on
what has happened and to think about what we can look
forward to. Although there is a feeling that things are getting
a bit more back to normal, the pandemic still looms large
over many of the things we do. There is an ongoing impact on
staffing, infection control rules and the hardest bit - visiting
for families that need to be in hospital.
Having said that, we have had a lot of positives - we welcome our fabulous new
consultants, Dr Will Regan, Dr Sophia Yong and Dr Alessandra Mazzola. We have two
new deputy CNS’s Grace Moriarty and Larissa Derreck. We have seen loads of you in
outpatients, and our working together with the Royal Brompton is gathering pace. A
big milestone was the granting of planning permission for the Evelina London - this
will include new facilities for our cardiac patients, theatres, cath labs and PICU.
We have exciting projects on the horizon to support our patients and families with
information, transition resources and importantly looking at how we can better
support both physical and mental well-being, in partnership with our superb cardiac
psychologist Niki Gregg and ECHO. Finally, it is really important we don’t lose sight of
why we are here, and that is first and foremost to provide the best care we can to all
children with heart disease and their families. So to all children and families, I wish
you all the best for the new year ahead.
Have your say on the future of Evelina London
This year, children, young people, and their parents and carers have been involved in
designing an expanded children’s hospital building for Evelina London, and helping
shape heart and lung care for the future. The Patient and Public Engagement Team
at Guy's and St Thomas' NHS Foundation Trust want to thank everyone who has
taken part by sharing your views.
Improving heart and lung care: ECHO, Guy's and St Thomas' NHS Foundation Trust,
including Evelina London and Royal Brompton and Harefield hospitals, and our
partners King's College Hospital NHS Foundation Trust and King's Health Partners
have been working on plans to change heart and lung services for patients. Come
and find out about the partnership and our work with patients and families this year
at our online event on 30 November. Book your free place: bit.ly/KHP-Feedback
Building the future Evelina London: Be part of the plans to build an even bigger and
better Evelina London. Get involved and help design our new building by signing up
to our mailing list: evelinalondon.nhs.uk/HelpUsGrow or call 020 7188 6808How ECHO is supporting families at Royal Brompton and Harefield hospitals The Royal Brompton and Harefield NHS Foundation Trust has officially joined Guy’s and St Thomas’ NHS Foundation Trust, bringing together world-leading expertise in the care and research of heart and lung disease. The Trusts have experience of working together with and the merger will help the trust to achieve its ambitions to best treat children and adults with heart disease. ECHO have worked on pan-London events for many years and are in the process of building strong working relationships across the hospitals and networks. At ECHO we welcome all heart families treated by the Evelina London and the Royal Brompton and Harefield and all of its network hospitals. We wish to reassure our members that we remain dedicated to providing support services to families now and into the future and are here if you need us. Bear with us as we update our communications and information to reflect these changes. Subject to the necessary public consultation, children’s services will move from the Royal Brompton Hospital site to an expanded Evelina London in 5-6 years' time. Subsequently, and again subject to consultation, the trust hope to build a new centre for heart and lung services at St Thomas’, which will be the home to adult heart and lung services from across the new Trust and potentially other partners as well. ECHO are in ongoing conversations regarding changes to children and adult heart services. In 2021, ECHO welcomed families usually treated by the Royal Brompton, which required additional capacity for treating COVID:19 patients. We understood how difficult it was for families and reached out by providing ECHO Cares packs, peer to peer support, providing up to date facility information to help find their way around the hospital and providing a listening ear when one was needed.
A message from ECHO's new Chair of Trustees, Steve Wood Hi, I'm Steve and I am the Chair of ECHO. Over the past 18 months, ECHO and the people we work with have witnessed or been part of constant upheaval and uncertainty. Every aspect of our lives including health, schools, work and travel along with navigating some serious health messages around the need to shield and/or stay home has meant we have been dealing with the unknown. I am so glad that ECHO are working with the cardiac community to provide exceptional care, support and information to those who need it most. ECHO have diversified what the charity does to ensure we reach out wherever possible and remain a safe space for those in the heart community who need someone to talk to, or help navigating the restrictions we have all been in. My relationship with ECHO started in 2017 - Alex, another ECHO trustee, spoke so passionately about what ECHO do that I wanted to find out more. As well as being a trustee I took part in fundraising activities and have asked my own networks to support ECHO. The Royal Parks Half Marathon was a big challenge as I wasn’t as fit as my previous runs and the rain made it hard to finish! My connection with ECHO is more than me using my professional experience to strategically steer our charity; I was born with Wolff- Parkinson-White syndrome, so am sure as a child my family faced what many ECHO members go through when I was a child. I have also seen the Evelina London from the inside when my wife and I needed medical care for our own baby. The past 18 months have been challenging and we are still facing uncertainty which is why I am inviting you and those you know to help us support families by: setting up a monthly direct debit; introducing us to your workplace for corporate fundraising or taking part in a fundraising challenge for ECHO. Every penny truly makes a difference - thank you.
Hello from The Centre for Medical
Engineering, King’s College London
The Centre for Medical Engineering (CME) at King’s College London has
enjoyed another productive and creative year collaborating with ECHO. After a
lot of experimentation and learning during 2020, we overcame the limitations
of technology to develop digital projects that connected our researchers with
the ECHO community to share experiences and insights.
Kalostasis: the interactive installation (ECHO Teens
visited the debut at the V&A Museum, London)
visualising the blood flow of the heart developed by
CME researchers, designers from Cellule and the
ECHO community, was featured as a virtual reality
(VR) experience at the international festival: Venice
Biennale 2021.
With the help of ECHO and four other charities, we brought 42 parents and 11
researchers together to explore their hopes and concerns around cutting
edge developments in scanning and surgical innovation during pregnancy.
The ECHO team were invaluable in shaping the delivery of online workshops
including wellbeing spaces, and ECHO parents provided incredible insights
that will shape the future of scanning and surgery in pregnancy.
With testing support from ECHO members and the
British Heart Foundation (BHF), researchers and
designers have created a one-of-a kind app, Echoes,
which records the beating of a user's heart with use
of their mobile phone. We hope that if the research
shows that mobile technologies are a viable way of
recording heart sounds, in the future, cardiac
patients and doctors could use at-home recordings
to check for sudden or significant changes.
The ECHO team have also given several inspiring talks to our researchers and
students about the charity’s work and our collaboration. We are excited too
that one of our scientists, Ash, features in the new ECHO Children's Magazine
- we hope you enjoy learning a bit about him and have fun taking part in the
games and activities! We hope next year brings opportunities for us to get
together in person and to continue to create and learn together.Spotlight: Fundraising Superstars
David raised £1,755 for ECHO after taking on his first ever marathon
“Being born with a series of heart defects and
surviving two open heart surgeries before the
age of 3, both where you’re given 50% chance
of survival, gives you a unique perspective on
life. Thanks to improvements in medical
science over the decades my next three open
heart surgeries weren’t as much of a coin flip,
although still no walk in the park. Rather than asking "why me?", I
have a constant reminder to make the most of everyday. Hence
why I signed up in aid of ECHO to my first and last marathon! It
wasn’t until I become a parent that I gained a better insight of the
rollercoaster ride that parents go through. This has highlighted the
importance of the services and support that ECHO provides to
children and young people with heart conditions and their families.
An amazing charity that I am proud to support.”
Ming ran 14k to raise funds after her niece was supported by ECHO
"This poem is about why I ran (more like limped with a twisted
ankle!) for 14k in July with a friend. This was to thank ECHO for all
they’ve done and continue to do in caring for my niece, Amelia,
who has had two life-saving heart operations."
I ran
how they gave us
I tripped hope every day
I stumbled and fell even when so much
was at play
as my mind
continued to dwell their amazing skills in
saving her life
how such a life?
down to the precision
this one little bod. and cut of the knife.
By the hand and Feeling into so much
grace of God love and devotion
Together the will It set my flailing legs
in motion.
care and attention
As I limped across the
of those too many finishing line
in number to and to a large glass of
mention fine fizzy wine!A message from Emma, ECHO's Community Fundraising Manager After 18 months, it felt so good to chat and catch up with families at the recent photoshoot, which ECHO led in partnership with Guy’s & St Thomas’ Hospital NHS Foundation Trust (GSTT), Evelina London and the Royal Brompton and Harefield (RBH). Being there reminded me how much the ECHO community enjoy meeting up, but how tough that is at the moment. We miss our ECHO volunteers, it was special to spend time with Monica, Ray, Jane, Steve and Karan at the ECHO photoshoot- Monica was 18 that week too! Lately my time has been spent working on our online Opening Doors event. The speakers are amazing, and we have over 90 households signed up so far. You can RSVP at: echo-uk.org/openingdoors I’m looking forward to connecting with you virtually and my daughter Georgia will be helping me through the wellbeing wreath-making workshop - I hope we can make something lovely for my front door. I am excited to be posting thank you certificates after events like Brighton and London Marathons, the Royal Parks Half, sky dives and Cycles have taken place for the first time since 2019. I am proud and grateful to our fundraisers, waiting to run a marathon for 2 years really takes dedication - they raised over £26,000 together which will go a long way to ensuring we can help families when they need it most. We have also booked 40 places in England’s longest zip line for any day across February - a whopping 724 metres 15 metres high on top of a 40- metre cliff across Bluewater in Kent. It’s £20 to book your ECHO place (normally £50) we would love you to raise as much as you can over £50. Matilda is 8 years old and has signed up with Jade & Caron who are nurses & ECHO volunteers. Sign up at: echo-uk.org/fundraise I need your help: February is Heart Month and ECHO want 2022 to be the most ENERGETIC heart month to date, we need you, your family, friends, children and workplaces to wear RED in FEB for ECHO! We have a great downloadable Heart Month Pack with ideas - these include a letter you can take into school or work, posters and fundraising ideas. Get your pack today: echo-uk.org/heartmonth
Download your FREE Heart Month pack:
www.echo-uk.org/heartmonth
#RedForECHOOther ways you can support ECHO
SUBSCRIBE TO OUR E-NEWSLETTER
Register to receive our monthly e-newsletter and hear about the
latest ECHO events, support, news and ways you can get involved at:
echo-uk.org/subscribe
LEAVE A LEGACY
Your legacy, through a gift in your will, could help us continue to be
there for ECHO families in the decades ahead. We recognise the
decision to leave a legacy is not to be taken lightly, and we thank you
for thinking of the ECHO Community. Find out more at:
echo-uk.org/legacy
SET UP A DIRECT DEBIT
As an independent charity with no NHS or government funding, direct
debits help us ensure that we can be there for families long-term. For
example, donating £10 a month could fund an ECHO Cares pack for a
family in hospital, giving them a lifeline of support. Set your direct
debit up at: echo-uk.org/donate
Scan here with your
phone camera to go
to the ECHO
donate page
GET IN TOUCH:
020 7998 4710
hello@echo-uk.org
www.echo-uk.org
@echoukcharity
ECHO is a Registered Charity No. 1146494
Canterbury House, 1 Royal Street London SE17LLWILL YOU BE A SECRET SANTA FOR CHILDREN IN HOSPITAL? You’re needed more than ever. The festive period can be a particularly difficult time to be a parent, child or young person in hospital as they face time away from loved ones while they undergo surgery, treatment and care. This year due to COVID-19 families face further isolation due to visitor restrictions and limited access to communal spaces on the hospital wards. Due to these important hospital changes, for the second year running our annual festive Elf visits and celebrations can’t go ahead - we need your help to reach out to every child in hospital this festive season and let families know we are thinking of them. With your help we can fill the toy chest on the ward and give arts and craft packs to children and young people in hospital. Play workers will use the arts and craft packs to run 1:1 art sessions with children at the bedside, giving children a much-needed distraction from their treatment and recovery, and helping them to express their thoughts in a safe space with a dedicated specialist. Become a Secret Santa at: www.echo-uk.org/secretsanta Instead of a gift, why not ask a friend to become a Secret Santa for ECHO this year?
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