Welcome to the ECHO website
ECHO’s mission is to provide support for children and young people with heart conditions who receive treatment at the Evelina Children’s Hospital and the outreach clinics at local General Hospitals attended by Evelina Cardiologists. We also extend a lifeline to their family & carers. We are here to provide information, friendship and moral support from infancy to adulthood, especially at times of high anxiety for the patient and/or his or her family/carers as well as to supply equipment to the hospital which will improve the patient/family experience both as an inpatient and at home. Our close working relationship with the hospital enables us to provides vital patient voice to help Guy’s & St Thomas’s NHS Trust shape its services for congenital heart disease.
ECHO Today
UPDATES
Visit our new ‘Get Involved!’ section for information on volunteering, fundraising and donations.
MEDICAL CARE PLAN
Sending your any child off to nursery or school for the first time is a daunting prospect, but never more so than for parents of a heart-child. How much information should you give about your child’s heart condition? What should the school or nursery do if they have any concerns? Who should they contact as first port of call in an emergency? We have put together a template for a Medical Care Plan which should help you pass the right sort of information on – click here for details.
SAFE AND SUSTAINABLE UPDATE – LATEST NEWSLETTER
For up-to-date news on the Safe and Sustainable Review please click here to read their latest newsletter.
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.
Autumn Newsletter
Please click here to view our latest newsletter.
ECHO and ETC DVD
ECHO has produced two DVD’s entitled ‘Eddie ECHO’s Heartbeat’ and ‘Echo Teen Club – You ask the questions’ which is available through the ECHO office and is also available to view through this website.
News
Brompton Judicial Review at High Court succeeds in quashing Safe and Sustainable Consultation
It has been announced that a judge at the High Court has declared the Safe and Sustainable Consultation process unlawful following a Judicial Review brought by the Royal Brompton Hospital in a bid to save its Paediatric Cardiac surgical service. However, the Judge rejected most of the grounds on which the RBH based their claim and only found against the JCPCT (the Joint Committee of Primary Care Trusts – the decision making body) on one point, namely the hospital’s score for “Research and Innovation”. The JCPCT intends to appeal the decision, but today’s announcement will, effectively, delay the process, and that will mean that no final decision will be made in December as had been planned. However, the Committee fully intends to announce a decision by Spring 2012 at the latest. To read the statement made by the Safe and Sustainable team today, please visit their website: http://www.specialisedservices.nhs.uk/news/view/76. In the meantime, Professor Shak Qureshi, Head of Service for Paediatric Cardiology at the Evelina said today : “I am pleased that the judge has not found flaws in the principles of the Safe & Sustainable review other than one area (research and innovation) that needs further assessment. Carrying out this further assessment will strengthen the overall review process”.
Work begins on designation of service providers for adults with Congenital Heart Disease: The process to designate future NHS services for adults with congenital heart disease (“GUCH” – Grown Up Congenital Heart Disease, or “ACHD” – Adult Congenital Heart Disease services) in England is underway. The NHS will be working closely with GUCH patients, clinical staff and other relevant stakeholders to develop proposals to consult the public on the future of GUCH services. For more information click here: www.specialisedservices.nhs.uk/news/view/48. We will keep you updated as the work progresses.
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.
Events
Wednesday 18th April – coffee morning at our South London Area Contact, Eleanor Beardsley’s home in Lewisham. Email Eleanor at south.london@echo-evelina.org.uk for more details.
Thursday 19th April – coffee morning with Angela May, our area contact for Suffolk. Email Angela at suffolk@echo-evelina.org.uk for more details.
Thursday 26th April – coffee morning at member Jo Rowe’s home in Chislehurst, Kent. Email admin@echo-evelina.org.uk and I will pass on your details to Jo.
Thursday 26th April – coffee morning at Jessica Cattermole’s home in Brighton. Email admin@echo-evelina.org.uk for more details.
Member Andrea Deans is holding a Fundraising Fun Day in Edenbridge, Kent on 7th July 2012. There will be a BBQ, children’s games, face painting, raffle, live music, a sponsored football match and much more! For more information you can email Andrea at andrea@andreadeansphotography.co.uk
