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.
NEW INFORMATION FOR PARENTS ABOUT FLU VACCINATIONS – OCTOBER 2013
We have received a comprehensive set of up to date guidelines from Dr Esse Menson, Consultant in Infectious Diseases and Immunologist at the Evelina London for flu vaccination of heart children. Please click here to download.
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.
Outpatient Appointments at the Evelina London Children’s Hospital
Further to our discussion in the Q&A session at the ECHO annual conference, there has been further concern expressed by parents about the new appointments booking system currently in use at the Evelina London.
The old system allowed families to leave clinic with a proposed date for their next follow up in their hand. However this was never a confirmed appointment date as future clinics always had a chance of being cancelled due to consultant leave, urgent admissions etc.
The current system of “Horizon Booking” means that a clinic is only opened 6 weeks prior to the actual clinic date. This means that the appointment offered is a confirmed appointment which should not be cancelled or rescheduled by us. It also means that the clinics are no longer overbooked and each child is allocated a realistic amount of time with their doctor and hopefully not rushed through too quickly, thus allowing patients and families enough time to have their concerns addressed.
Horizon Booking means that a family will not hear about their appointment until about 5 weeks before the actual appointment date, leaving many families wondering when they will hear from us. We recognise that this causes some anxiety, but can reassure you that all patients are held on a master list of follow up requests so have not been “lost” to follow up. We acknowledge that the actual appointment may not occur exactly at the time interval (e.g. 6 months or 12 months) that was mentioned at the last clinic visit but our appointment clerk works closely with clinical staff to highlight and report back parental concern. We also recognise that this only gives families 5-6 weeks notice of an outpatient appointment, but as an organisation, the trust has gone over to this system for most specialities and feels that the benefits outweigh the disadvantages, particularly in reducing the number of clinic cancelled or rescheduled. Importantly any specific requests such as early or late appointment times, limitation such as holiday dates or other work/school commitments can be noted when the patient is added to the review list. If there are social or care issues which mandate a specific date then our system will try to accommodate these as well.
Unfortunately, the introduction of Horizon Booking has revealed that demand particularly for “follow-up” appointments has exceeded capacity within existing clinic schedules. As a department we are not keen to simply go back to overbooking clinics with more and more patients, who will be seen for shorter and shorter appointments. Our preference as a department is to expand our number of clinics and think very carefully about follow up frequency. Unfortunately this process of transition take time and many families have been caught up in the transition period. I apologise personally on behalf of the department for the distress that this change has caused families and am working with our management team to urgently make more clinics available as soon as possible to manage the shortfall in appointments.
Going forward, we have implemented an evidence based review of follow up frequency to adapt follow up visits to the condition and clinical well being of the child so some families will notice that their clinic visits are more frequent but for many the clinic visits may be less frequent.
We are also trying to engage more formally with our network of joint cardiac clinics to allow families to be seen locally if clinically appropriate.
Finally we welcome feedback on our performance and I meet regularly with ECHO to share service developments and hear your views. As Head of Service, I remain available to any of our families who have specific concerns.
With best wishes
Dr Owen Miller
Head of Service, Clinical Lead
Congenital Heart Disease
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.