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.
Information, guidance and news direct from the hospital.
Message for Parents/Families from Dr Aaron Bell, Evelina London Children’s Hospital
24th January 2017
Dear parents and families,
I’m sure many of you will have seen reports in the media about a rare infection affecting a small number of patients who have had open heart surgery. It is related to the use of heater-cooler units which are an essential piece of equipment during open heart surgery, and the possibility of bacterium getting into the air. The majority of patients who have been affected are adults having valve replacements.
Although rare (1 in 5000 operations), this is a national issue, and NHS England and Public Health England are in the process of providing updated guidance to hospitals, patients and their families about it. However, it is something that GSTT has been monitoring very closely, in both children and adults, as they do with any infection. Based on the reports over the weekend our infection control team have said today: “After a thorough review of all patients we have not identified any cases at GSTT”.
The advice so far is that if your child is well then you don’t need to do anything. Initial information sent from NHS England can be read below, and should be updated shortly.
I know something like this is always a worry for parents, especially after everything their children have been through, but the risk of this is extremely low, much lower than the other risks of having open heart surgery. We are hoping for updates from NHS England as soon as possible and will keep you posted with any new information as it comes to hand.
Dr Aaron Bell
Consultant Paediatric Cardiology
Head of Service, Evelina London Children’s Hospital
Infection risks associated with heater cooler units used in open-heart surgery
If you or your child have had heart valve replacement or repair surgery, or a heart or lung transplant since January 2013 it is important that you are aware of a potential, but very low infection risk from a rare bacteria called Mycobacterium chimaera. If you are about to have one of these procedures you may also find this information useful.
The risks of infection from this bacteria are very low and much lower than the risks involved in not having appropriate treatment.
What is the infection risk?
Public Health England (PHE), the Medicines and Healthcare Products Regulatory Authority (MHRA) and NHS England have carried out an investigation suggesting that a device used to heat and cool the blood during some types of heart surgery has been linked to a rare bacterial infection caused by Mycobacterium chimaera. This device is essential for carrying out surgery and we are now working on reducing the risk. This is an issue that has affected this type of machine across the world.
The risk from this infection is very low – only about one person in every 5,000 people who have open heart surgery will develop it. For patients who do become infected, this infection can be slow to develop and difficult to diagnose. It is possible to develop symptoms several years after surgery.
What are the symptoms of infection?
Symptoms of an infection with this bacteria have many of the same features of other illnesses. Therefore, if you experience any of the following, while it is unlikely to be caused by this bacteria, it should be considered by your GP or other health care professional as a possibility that needs to be excluded.
Symptoms to be aware of include;
Please note this infection cannot be spread person-to-person and remember that there are other causes for these symptoms so there is no need to be alarmed or to seek emergency treatment.
What to do if you do not have symptoms
If you are well and have no symptoms, you do not need to do anything immediately. Be aware of the symptoms, particularly because the infection can take up to five years after surgery to appear. GPs are being contacted and asked to make a note on the records of people who have had heart valve replacement or repair surgery since January 2013. When you next visit your GP, you can ask your GP to check that the information has been added to your patient record.
What to do if you feel unwell
If you feel unwell and have one or more of the symptoms listed above, please make an appointment with your GP for review. Your GP may refer you for assessment and a blood test. If you are diagnosed with the infection, treatments are available.
What is being done to reduce the risk of infection?
NHS England, Public Health England and the Medicine and Healthcare Products Regulatory Agency issued guidance to surgical centres in November 2015 after mycobacterium chimaera infection risk was identified. The guidance set out what hospitals needed to do to decontaminate heater cooler units to reduce the risk and also advised NHS surgical teams to inform patients having these specific types of heart surgery of the possible risk.
No cases of the infection have been identified in patients who had surgery since this guidance was published, although this is being monitored closely.
The guidance is currently (January 2017) being revised and updated alongside additional guidance for GPs. The revised guidance will ask hospitals who provide heart surgery to identify all patients who have had a heart valve operation since January 2013 and cross check this information with GPs. Identified patients will then be contacted via a letter from their hospital to make them aware of the potential, but very low, infection risk.
Why are so many heart children turned down for DLA despite their disabilities? We think it’s partly because heart disease is not given a place in the guidance used by the people who look at claims.
On Tuesday 29th November national children’s heart and adult congenital heart charities are holding a meeting in Parliament to obtain MPs’ support in getting children’s heart disease recognised in the Disability Living Allowance Assessor pack.
ECHO need your help to get as many MPs to attend the meeting as possible.
Please could you write to your MP and ask him or her to represent you at the meeting. If you need to find your politician’s name and address follow this link http://www.parliament.uk/mps-lords-and-offices/mps/.
You can download a copy of the kind of letter that you might send or email to your MP. All you need to add is information about your own child, their needs and any problems you have had claiming DLA.
This is your chance to help us make a change.
8th July 2016
NHS England has today announced action to deliver consistent and high quality services now and for the future to the CHD community.
ECHO have supported the NHS England review of children’s and adults congenital cardiac services over the past four years and welcome the NHS England set of standards for congenital heart surgery.
We have been reassured that children from across England will be given access to the very best possible surgical treatment and care. We are also encouraged that this will follow them into adulthood as the standards include transition services, giving children, young people and adults truly joined up care.
ECHO will continue to represent the views of parents, carers and young people, both at national and local meetings and events, and will continue to work with the medical professionals who deliver outstanding services at Guy’s and St Thomas’ NHS Foundation Trust while they continue to develop their plans to ensure the standards are fully met and maintained.
Whilst we welcome the news that occasional practice will stop and procedures and surgery will only take place in hospitals that can meet the standards, we appreciate that families, parents, patients and staff at units who may not be offering surgery in the future will be affected by the announcement. We urge all those people to seek any support required, both medical and emotional, over the coming months.
Today’s announcement will be challenging and come as a surprise to many families, but in the future, children, young people and parents can expect every unit in England offering surgery to meet the standards or to demonstrate how they will meet them. It would be wrong for us to encourage units unable to meet the standards to continue providing surgical procedures.
The announcement and implementation of the standards will not stop the units offering excellent cardiology or outpatient care.
We have had calls, emails and private Facebook messages from parents looking for reassurance about waiting lists and capacity, but want to reassure families that nothing will change overnight and that we will work with NHS England and other organisations to ensure patients, parents and carers have access to relevant and up to date information.
NHS England recommendations: https://www.england.nhs.uk/2016/07/chd-future/
Congenital heart disease standards and specifications: www.england.nhs.uk/commissioning/spec-services/npc-crg/chd/
Samantha Johnson, Chief Executive firstname.lastname@example.org
“Evelina London Children’s Hospital and the Trust’s Adult Congenital Heart Disease services have been assessed as meeting or being on track to meet the standards within the timescales required and NHS England has confirmed that they will continue to commission the services of the Trust.
Services will continue as usual whilst we await the next stages of the national process.”
Marian Ridley Director Evelina London Children’s Hospital
ECHO in the news!
On Sat 26th March heart dad Stephane Wright organised his 4th major fundraising event for ECHO – a BMXLife Bunny Hop through London. In just over a year Stephane has raised over £40,000 for ECHO, following his son Tommy’s stay at the Evelina in Oct 2014. Photos from the day here.
We give a huge THANK YOU to Stephane and his family and all of the BMXLife team for their ongoing support and for raising such a huge amount of money AND awareness for ECHO.
ECHO Superhero Fun Run May 2016
Take part in this fantastic family challenge event by dressing up as your favourite Superhero and raising money for ECHO:
News of the ECHO Christmas party has been reported on the South London Press website.
Flu vaccinations – 2015 update
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.
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.
Evelina London services rated ‘Outstanding’ and ‘Good’ by the Care Quality Commission
We are delighted to announce that the Evelina London Children’s Hospital has achieved an ‘Outstanding’ rating by the Care Quality Commission (CQC) with children’s community services rated ‘Good’.
In its report published on Thursday 24 March, the CQC praises hospital staff who its inspectors found to be ‘motivated and compassionate.’ Inspectors also reported that patients using community services were ‘treated with dignity and respect’.
Evelina London Children’s Hospital is the only children’s hospital in England to have been rated as ‘Outstanding’ by the CQC to date.
We congratulate all staff at the Evelina London Children’s Hospital for this fantastic result and thank all ECHO members who assisted with this process.
Update from the Evelina London Children’s Hospital, December 2015
Since my last report much has happened within the department. Activity has remained at a high level at all parts of the clinical pathway. I would like to thank all members of the team for “stepping up to the plate”. The contribution of the whole team has been “above and beyond the call of duty”.
The patient journey for many families begins in fetal cardiology; we have recently expanded our consultant numbers with Dr Marietta Charakida and Dr Vita Zidere doing regular clinics both here and at Kings. Professor John Simpson has also reached out to Kings and is supporting Dr Zidere on that site, greatly improving our joint site working. Plans are well advanced for a move of the whole fetal cardiology department from within the Evelina London Building across to the South Wing in St Thomas’ Hospital. This facility will be purpose-built and will allow greater privacy for women attending and closer access to obstetrics and fetal medicine. This move is planned for 2016-17.
Walrus outpatients has seen activity remain at a very high level, with many extra clinics taking place to meet demand for appointments. Big news for parents and families is that we have listened to your concerns and indeed share your concerns. After the new year, we will revert to an outpatient booking system where consultants will give advance notice as much as possible, which clinic(s) might be cancelled due to planned leave and we will only book into clinics that are clearly likely to take place. This aim is to provide families with more certainty regarding a definite date/time for their follow up appointment, with hopefully a much smaller chance of the appointment being rescheduled. Going forward we would be keen to hear back on how this is received.
Apart from the medical teams, our clinics rely very heavily on our senior nurses to provide continuity of care and essential information and support for families. We are working towards making the outpatient environment larger and more able to cope with increasing demand. This will involve looking at current global room usage across level 1 and using all our room more flexibly. We hope in the planned reconfiguration of level 1 (due 2016-17) to have a dedicated space for our Clinical Nurse Specialists, so that their vital work can be provided in a purpose built area.
Our admission team has now been in place for over a year and although there have been some teething troubles, we are working closely with the general and service managers to adapt the admission process to the complex needs of cardiac patients. I welcome the tireless input from Dami Osibona, our Assistant Service Manager and Anna Jones, our new Service Manager, in working with all team members to transition to a new way of working with the aim of providing the best support possible.
Once admitted to Savannah, I am confident our patients are getting world-class care delivered by an enthusiastic and highly skilled nursing, medical and allied health team. We have seen significant career development amongst our own nurses who continue to grow in experience and we have benefitted from having several groups of highly capable junior doctors, all of whom have been role models for good team-working.
At a senior medical level, there have also been changes; Dr Charakida started as Senior Lecturer/Honorary Consultant and we are still recruiting to fill the other vacant Senior Lecturer post. Dr Jelena Saundankar will start in January as a locum consultant to add extra capacity and resilience to the consultant ranks. I have started in my role as Associate Medical Director (Specialist Networks) and formally handed over to Dr Aaron Bell as the new Clinical Lead on 09/12/15. I know from experience that the Head of Service role works best when there is wide support from all parts of the Evelina community; I am sure that this will be forthcoming from ECHO.
Finally, our network continues to grow, there is increasing demand to support our network partners to deliver cardiac care closer to the patient and this will place increasing stress on our already stretched team. I am sure we can continue our fantastic joint working and together provide seamless care from fetus to adult for all families affected by Congenital Heart Disease.
With best wishes and season’s greetings
Dr Owen Miller
Associate Medical Director (Specialist Networks)
Outpatient Appointment Update
Owen Miller, Head of Service, Fetal and Paediatric Cardiology recently invited ECHO and four parent representatives along to a meeting to discuss further concerns expressed by members about the current outpatient appointment system ‘Horizon Booking’. The Evelina are aware of the difficulties that some families’ are still facing and together with ECHO are working on ways to help improve the accessibility of clinics, notice times and communication.
You can view the full meeting notes and action points here.
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.