Welcome to the ECHO website
ECHO supports children who are treated at the Evelina Children’s Hospital (and at clinics held at local District General Hospitals visited by Cardiologists from the Evelina), principally for Congenital Heart Defects, as well as their parents/carers and close family. We provide information, friendship and moral support at times when parents feel alone, isolated and desperate, or when they have immediate worries and concerns and need guidance or advice. We also support and befriend the children themselves as they grow into their teenage years and beyond, to help them take the first steps towards independence in their lives and in their attitude towards their heart condition. Our advocacy provides vital patient voice to help Guy’s & St Thomas’s NHS Trust shape its services for congenital heart disease.
ECHO Today
Wendy Kemp’s ECHO Hearts Jewellery Collection
Wendy Kemp, a jewellery designer and artist who works with silver and semi-precious stones, has designed a special range of ECHO hearts jewellery to sell to help raise funds for ECHO. The range is available to purchase through Wendy’s website: www.wendykempjewellery.co.uk. 25% of all sales will be donated directly to ECHO. Please visit Wendy’s website and take a look at this beautiful collection, which is very reasonably priced and which will, we’re sure, provide inspirational and meaningful gifts ideas for your loved ones, friends and family, as well as raising funds for ECHO!”
SAFE AND SUSTAINABLE PAEDIATRIC CARDIAC SURGICAL SERVICES PROGRAMME – UPDATE
Following visits to all the surgical centres in the country by Sir Ian Kennedy and a panel of experts during June, a series of stakeholder events were organised to allow patients, parents and staff to have their say about any possible reconfiguration. The London and South East event took place on Saturday July 3rd at the Science Museum and was well attended by ECHO parents, who, as usual articulated their views and concerns effectively, but feedback from the event was slightly mixed – some parents felt that decisions had already been taken over the future of surgical services in the region, and therefore a “done deal” or a “fudge”. I have been representing Evelina families for a number of years now as part of this process, working towards such a reconfiguration, and I can assure you that, at present, no decisions have been taken, but that NHS Commissioners, Hospital Management, Medical and nursing staff, along with parent representatives will continue to work hard to ensure that only the highest standards of care are available to heart-children in this country. For a full update on the progress of the Safe and Sustainable review, plus a timetable of important forthcoming dates, please visit the Safe and Sustainable website at: www.ncg.nhs.uk/index.php/safe-and-sustainable-programmes/. If you have any questions or concerns personally, or would like more information on the work being undertaken locally, please contact me on director@echo-evelina.org.uk. Jo Wilson
PAEDIATRIC CARDIAC SURGERY SUSPENDED AT OXFORD HOSPITAL
For information relating to the suspension of Paediatric Cardiac Surgical services at John Radcliffe Hospital, Oxford, and how it affects the Evelina Children’s Hospital, please click here.
Sports for Heart Children
Lynne Kendall, who is Clinical Specialist Physiotherapist, Congenital Cardiology, from Leeds General Infirmary, is one of this country’s foremost experts in Sports for Heart Children and gave a fascinating presentation at our Conference last Summer. She has written an informative and very useful guide to sports and physical activity for heart children – please click here to see the full document.
COUGHS AND COLDS IN CHILDREN WITH HEART CONDITIONS
Following our request for some written guidance from the hospital, Dr. Aaron Bell, Consultant Paediatric Cardiologist, has written an article which gives comprehensive advice about coughs and colds in children with heart conditions. Please click here.
IMPORTANT FLU AND WINTER VIRUS ADVICE
We have received up-to-date information and guidance from the Evelina Children’s Hospital about the seasonal flu and swine flu vaccination programme for this autumn/winter season. Please click here for full document.
SWINE FLU
UPDATED INFORMATION FROM THE EVELINA HOSPITAL AVAILABLE NOW – PLEASE CLICK HERE.
Spring Newsletter
Please click here to view our latest newsletter.
GUCH PA (”Grown Up Congenital Heart Patients Association”) has recently published a series of comic strips aimed at young people with Heart Conditions dealing with issues with affect them most. To download a copy, please click on this link: http://www.guch.org.uk/4teens/comicbooks
New Online Gallery
Take a look at our new online Gallery of photos, which will eventually contain pictures from ECHO parties, events and images that families have submitted. If you’d like to include a photo of your heart-child and/or siblings, please forward to: admin@echo-evelina.org.uk.
If you are doing a sponsored event to raise funds for ECHO, why not make life easy for yourself and create your own fundraising page at www.Justgiving.com. Log on and follow the simple instructions.
Did you know you can donate money to ECHO every time you shop online, at no extra cost to you?
Please click here for more details.
News
Corience is a European initiative, partly funded and wholeheartedly supported by the E.E.C., and brings together support groups from all over Europe, such as Sweden, Norway, Germany, Spain, and of course the UK. It is an independent platform on congenital heart defects for patients, parents, doctors and scientists. It contains lots of very good information, not only from the UK but all over Europe and will be constantly updated. Why not take a look at www.corience.org.
Congenital Cardiac Audit Database website
All hospitals which perform surgery and other invasive procedures on children with heart conditions are required to submit data every year for inclusion in a UK-wide database. This database is known as the Congenital Cardiac Audit Database (CCAD), and analysis of this information allows individual hospitals and doctors to compare outcomes which should enable good or poor practice to be identified and appropriate action taken. Please click here to find out more.
Parent’s Stories
Case Studies written by parents about their own experiences.
Please click here to read more.
2010 London Marathon
ECHO has 8 guaranteed places in the 2010 London Marathon. If you would like to be considered for one of these sought-after places, please contact Jessica on admin@echo-evelina.org.uk.
ECHO Launches DVD for parents
ECHO has produced a DVD, entitled “Living with Congenital Heart Disease” which is available through the ECHO office or through the Evelina Children’s Hospital.
Please click here to read more.
Events
We have a fantastic range of ECHO events for adults and children! Our events page is updated regularly, so please keep visiting to see what’s happening in and around your area!
Norfolk member Rachael’s Garden Party to raise funds for ECHO
Date: Sunday 8th August 2010
Venue: Beech Farm, Aslacton, Norfolk, NR15 2ER
Time: 12 noon onwards (food available after 1pm)
Ploughman’s lunch and deserts £4.50
There will be a cake stall, raffle, tombola and games.
For more information please contact Rachael on 01953 888495, or email nichlos01@btinternet.com
CHF Cruise on the River Thames
19th August 2010 – CHF Cruise on the River Thames – watch out for news on the CHF website
ECHO Christmas Party 5th December Millwall FC, 2-5pm, further details will be sent out in the Autumn but put the date in your diaries!
London Marathon and the adidas Women’s 5K Challenge
We always have a team of runners in the London Marathon and the adidas Women’s 5K challenge each year. Click here for more information.
