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 2013 Conference
Members can book places at this year’s conference now. Click here to fill in the online form.
ECHO 10k Challenge
Saturday 28th September, 2013, Polesden Lacey, Surrey
Come and take part in ECHO’s first solo sports challenge event, which will take place on Saturday 28th September 2013 at the Beautiful National Trust property, Polesden Lacey, Surrey.
Statement from Guy’s & St Thomas’ NHS Foundation Trust
After recent reports in the press and on radio, Guy’s & St Thomas’ NHS Foundation Trust issued the following statement on 12th April.
“Response to children’s heart surgery mortality report data
The report presented to Leeds Overview and Scrutiny Committee clearly states that its findings do not suggest a safety problem in any centre.
Staff in the Evelina Children’s Hospital closely and continuously monitor and scrutinise clinical outcomes and a range of data, including that from the new PRAiS methodology, which we along with colleagues in Glasgow and at Great Ormond Street, have been trialling for the past year ahead of this being rolled out across all centres.
We are confident that we have excellent outcomes despite treating some of the smallest and sickest babies, many of whom undergo specialist surgical techniques which are not available elsewhere.
As part of our commitment to robust monitoring, peer review and national benchmarking, we are also committed to ensuring we have the best possible data – as demonstrated by the Data Quality Index which is published by NICOR.”
If you have any concerns, please contact me directly. JO WILSON
An appeal against Court ruling on the configuration of children’s heart surgery
On 1 April 2013, NHS England inherited responsibility for the Safe and Sustainable Review from the Joint Committee of Primary Care Trusts.
The review, launched in 2008, was set up to transform children’s heart services to provide better care to patients and improve outcomes.
There is broad consensus – among both clinicians and patient groups – that the NHS needs to concentrate the care of children needing these services into fewer, larger specialist centres, as an integral part of children’s heart networks.
NHS England believes that we must deliver this change as quickly as possible on behalf of children and their families. We now have an opportunity to take stock and assess the best way of achieving our objective in the fastest possible time.
To do this, we need to take account of all the available information, including the recent High Court ruling of 27 March and the report on the issues that is due to be published by the Independent Reconfiguration Panel.
We have been advised that there are good grounds for appeal and these points are set out in an application that has been submitted to the Court of Appeal.
FLU JABS – it’s that time of year again!
Click here for up-to-date advice from the Evelina Children’s Hospital.
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.
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.
WANT TO DONATE OR HELP ECHO?
Visit our ‘Get Involved’ section for details how you can fundraise, donate or volunteer for the charity!
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.
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.
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.
You should have received your ECHO Christmas party invitation at the beginning of November. We look forward to seeing many of you at the party in December.