Bulgaria : establishment of a regional centre of excellence for the Balkans
ECO has been working in Bulgaria for three years and over this time there has been a large increase in the number of babies being referred to the country’s main cleft centre in Plovdiv. This is probably the direct result of ECO's work at maternity unit level and a targeted approach to getting information to paediatricians and obstetricians.
Lead surgeon in Plovdiv, Youri Anastassov says "it is extremely good news that more babies are being referred at the right time for multidisciplinary treatment which will mean a drop in the number of children being abandoned. Our aim now is to create a national centre in Bulgaria that will become a regional centre of excellence and training for the whole of the Balkans.”
ECO is pleased to be able to support Plovdiv in achieving this goal and has set out a three year programme which will continue the ‘front line’ education and information projects which have proved so successful in the past, but will also directly support the clinical work of the team . It envisages the appointment of a new speech therapist to the team who will lead a national training programme in the form of annual camps, culminating in a national network of trained speech therapists. Similarly we will be investing in the appointment of a new orthodontist to the team who, in partnership with an established cleft team in western Europe, will organise training at country level to develop a national network of trained orthodontists.
In a separate development, Plovdiv is likely to be chosen as the venue for a major European cleft research conference scheduled for 2013, funded by EUROCleftNet (see above).
ECO secures support for European cleft research network
A European network dedicated to research into the causes and treatment of clefts has won funding from the European Science Foundation after ECO secured crucial match funding for the initiative. The network, called EUROCleftNet, will, over the next five years, bring together researchers from all over Europe to look at ways in which clefts might be prevented and treatment outcomes improved.
A primary aim is to secure funding for long term research in these areas and try to get commercial partners on board. ECO is on the Steering Committee of EUROCleftNet and is keen to ensure patients are consulted and involved in research proposals. The project will also ensure there is an updated service directory for cleft treatment in every EU member state which ECO will ensure this is available in all the relevant languages.
Romania: two training programmes completed
With assistance from UNICEF in identifying a partner hospital for our cleft nurse training programme, we organised a successful workshop in Iasi in October 2011. Nearly 40 people took part, ranging from nurses, midwives, neonatologists and surgeons from a wide geographical area.
Amongst the trainers was a cleft nurse specialist from Bulgaria: this proved to be a great asset as she was able to explain how simple protocols could be adopted and make a huge difference even where resources are very limited. It was clear that there had been little dialogue about cleft care across the disciplines involved and one of the key outcomes of the training was an acknowledgement that good cleft care has to be multidisciplinary and starts at point of diagnosis. We heard first hand accounts from some parents explaining that they had had no support whatsoever in the early months and believed that they would need to go to another country for surgery even though it was available in their home town. There are plans to repeat the training elsewhere during 2012 and to nominate two nurses in Romania for specialist nurse training abroad. They would then begin to organise training of other nurses within Romania, following the model established by ECO in Bulgaria.
In November ECO funded and coordinated a cleft surgical workshop in Bucharest. We were joined by surgeons Prof. Jan Lilja and Dr. Hans Mark from Gothenburg, Sweden together with their team speech therapist and orthodontist. There were 80 participants taking part, with surgeons from all over Romania, who were able to view live operations via a tele-link between the operating theatre and the conference venue. The surgeons explained their techniques in real time and afterwards were available for questions. This was a highly effective training method and one surgeon later fed back that “'First of all I want to thank you for giving me and my colleagues the chance to meet Prof. Lilja and Dr. Mark. I am very proud to say that I have already used some manoeuvres learnt during the workshop on two of my patients. Both patients are doing well” .
At the end of the workshop there was an announcement that an all-Romania, multidisciplinary association would be set up for cleft lip and palate — RomaniaCleft— which would try to develop agreed national protocols on cleft care. This has always been the desired outcome for ECO and we will do what we can to support this initiative. We are grateful for financial help from Transforming Faces Worldwide in Canada for our work in Romania.
EUROPEAN STANDARD IN EARLY CLEFT CARE: UPDATE
At the beginning of last year the European Cleft Organisation (ECO) launched a formal proposal to develop a European Standard in the early management of babies born with clefts in an attempt to halt the abandonment of babies with clefts in some parts of Europe.
Whilst our proposal was widely supported, some countries had concerns that the introduction of a standard could interfere with local practice and go against national health policies.
ECO addressed these concerns at an information meeting in Brussels in November 2011 and prepared a response document that can be seen on our website at www.ECOonline.org. Most concerns have arisen out of miscommunication rather than the substance of what we are trying to achieve.
Executive Director Gareth Davies says "this is about sharing best practice for the benefit of children all over Europe. The Standard will be developed by an international panel of experts drawing on what is already in place in many countries" . We will be organising further meetings in the first half of 2012 and plan to re-launch an amended proposal during the year.
INFORMATION MEETING ON EUROPEAN STANDARD
A European Standard on the early management of babies born with clefts is widely supported. However, some countries have expressed concerns and we held an information meeting at the European Standards Agency (CEN) in Brussels on 8 November. The meeting was very constructive and we felt that many concerns stemmed from mis-communication rather than from the substance of what we are trying to achieve. Here is our formal response to the concerns.
We had representation from 4 of the countries who had expressed concerns, but not from Germany. In total 7 countries were represented. Representation was largely from stakeholders rather than the standards bodies, but AFNOR in France did send a delegate.
We plan to relaunch the proposal and your input is important. Please contact us if you have any questions.
A general overview of European Standards, and the need for a cleft standard, can be found here.
ECO WELCOMES NEW ADVISORS
We are keen to increase the organisation's reach and representation throughout Europe and to this end we have set up an Advisory Committee comprising representatives of different cleft disciplines, patient groups and health NGOs from up to half the EU member states .
TWO CHARITIES MAKE STATEMENT ON WIDER ASPECTS OF CLEFT CARE
The recent abandoned merger between The Smile Train and Operation Smile has brought about heightened public awareness of the condition of cleft lip and palate. Supported by extensive experience working with children born with clefts over many years, and in several countries around the world, the European Cleft Organisation and Transforming Faces Worldwide feel that any dialogue on care cleft management must highlight the wider needs of children born with clefts.
The full statement can be viewed here
The two charites believe all charities involved in cleft care should be working together.
ECO PROPOSES A EUROPEAN STANDARD FOR TREATMENT OF BABIES BORN WITH CLEFTS
ECO is proposing that a European Standard is introduced spelling out treatment pathways for all babies born with clefts. These guidelines will cover the period from diagnosis (pre or post natal) until the moment of definitive surgery to repair the cleft. Our own studies have shown that many babies are abandoned in parts of Europe because parents are given the wrong or misleading information about clefts at the time of diagnosis.
In particular there is a great deal of confusion around feeding issues and naso-gastric tubes are often unnecessarily inserted meaning babies cannot go home. ECO has approached the Bulgarian Standards body (BDS) to make a formal proposal to the European Standards body in Brussels (CEN) who will consult with all the Standards member organisations in Europe seeking support for the development of a standard. ECO will be lobbying stakeholder groups throughout Europe to encourage their national standards’ bodies to support this initiative. Executive Director of ECO Gareth Davies says that ‘this is a great opportunity to get cleft lip and palate on the health agenda throughout Europe. The development of a standard should reduce the number of children abandoned because they are born with a cleft. It will also have an impact beyond Europe with the possibility that the International Standards Organisation (ISO) will adopt something similar.’
An initial consultation document was circulated early in 2011 and received wide support thoughout Europe. However, some countries expressed concerns that a standard in cleft care might interfere wth their own internal healthcare legislation. Cleft specialists in some instances were not included in the national consultation procesess and they have since let us know that they would have supported the initiative. We are planning to relaunch and recirculate a revised proposal later in the year.
Further details can be found under European Standards in the menu toolbar at the top of the page
ECO NEWSLETTER “FENDLIPO”
Fendlipo has just been released which gives an overview of our current activities. This is a useful summary to show to people who might be interested in supporting our work.
Fendlipo means cleft lip in Esperanto, an international language created by LL Zamenhof in 1887. The goal was to create a politically neutral language that would serve as a universal second language to foster international understanding. ECO goes forward in the same spirit.
ANNOUNCEMENT OF 9TH EUROPEAN CRANIOFACIAL CONGRESS
September 14 - 17, 2011 - Salzburg
Message from the President of the Austrian Cleft Palate Craniofacial Association
The European Craniofacial Congress has a long tradition, which is why the Austrian Cleft Palate Craniofacial Association is proud to be able to organize this conference in Austria for the first time. It is an honour and pleasure for us to continue this tradition in Salzburg in September 2011. http://www.ecc2011.eu
The conference will focus mainly on interdisciplinary co-operation, the joint effort of all specialist fields involved in the treatment of patients with cleft lip and/or palate and related craniofacial anomalies. Besides top international speakers, we would appreciate many contributions from all participating disciplines as this co-operation is so important for a successful treatment. With this in mind, we would like to encourage colleagues from all countries to take an active part in the conference and offer lectures and/or poster-presentations. Salzburg, which is well-known as a venue for conferences, will also play a part by creating the right atmosphere for our endeavours.
So, let us all take the opportunity to establish new contacts in other countries and in other specialised areas as well as renew old friendships and acquaintances.
I would therefore like to invite you to participate in the 9th European Craniofacial Congress in September 2011, and wish you a successful time, scientifically, as well as a relaxing and interesting time in Salzburg.
Best regards
Peter Schachner, MD, DDS
President of the 9th European Craniofacial Congress
President of the Austrian Cleft Palate Craniofacial Association
Dept. of Oral and Maxillofacial Surgery
Paracelsus Private Medical University, Salzburg, Austria
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RESPONSE TO SAVE THE CHILDREN REPORT CLAIMING MOST ORPHANS HAVE LIVING PARENT
(November 2009)
We do not have to travel far from the UK to find that children are put in orphanages not because they are parentless but because parents are not given sufficient support to enable them to raise the children themselves. The report states that 98% of children in residential care in central and Eastern Europe have at least one living parent. Many children are given up by their parents because of lack of economic support but many others, too, are given up as a result of misguided information about treatable health conditions. Paul O’Grady, a Save the Children Ambassador is entirely correct in his assertion that “families around the world should be supported to stay together, and more needs to be done stop children being put into care unnecessarily."
Our charity aims to improve the treatment for cleft lip and palate throughout Europe and in many cases we are finding that babies end up in care not because of lack of available surgery but because health professionals present at the time of birth encourage parents to give their babies up because they are told they will not be able to feed them. Expereince in the UK has shown that with some initial nursing support nearly all babies born with clefts can be fed at home with a soft, squeezable, bottle or teat. It is entirely right that we should be concerned with state of orphanages but we also need to look far closer at the circumstances that lead to babies ending up in care in the first place.
WORKING WITH UNICEF (BULGARIA)
The European Cleft Organisation (ECO) is working with UNICEF in Bulgaria to try to push for better post-natal care for a range of medical conditions, including cleft lip and palate. ECO Executive Director, Gareth Davies met with UNICEF (Bulgaria) Director, Octavian Bivol, in March 2009 and agreed that a meeting with the Ministry of Health should be sought.
Prior to any meeting taking place, ECO was asked to provide some factual evidence in the form of a survey of parents’ experiences around the time of the birth of their child (see below). A change in government in Bulgaria in July has meant that a meeting will be delayed but ECO hopes to be use the opportunity of a change in personnel at the Ministry of Health to get cleft lip and palate high on the agenda
BULGARIA - 40% OF PARENTS OF CLEFT CHILDREN “ENCOURAGED TO PUT THEIR CHILD IN CARE AFTER BIRTH”
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BABY BOY WITH A CLEFT PALATE SENT TO ORPHANAGE AFTER BIRTH
Here is a case history we have just received from one of our projects in Bulgaria. We have been helping to train specialist nurses and have funded a website for the parent support group, ALA:
"... the doctors at the maternity unit insisted that the best way of feeding the Mario was to insert a nasogastric (NG) tube and send himr to an orphanage where the medical team would look after him. The mother was not given any ch
oice in the decision. The parents started to look for information and found ALA's website. With difficulty they managed to take their Mario, with a nurse from the orphanage, for a consultation with the multidisciplinary team. During the consultation the specialist nurse [trained by the European Cleft Organisation] taught the mother to feed her son with a bottle with no problems. However, back at the orphanage, the staff refused to feed Mario by mouth despite the recommendqtions of the specialist nurse and the wishes of the mother. After three days, with some pressure from the local media, the family were allowed to take their Mario out of the orphanage and look after him at home. Each month the family lets us know how things are going so we can provide help if needed. The family went trhough a very traumatic time and are really grateful for the help from our team"
Tahimira now at home with 12-month-old Mario
NEW WEBSITE FOR UK CLEFT LIP AND PALATE ASSOCIATION (CLAPA)
CLAPA has a new website and has introduced a free membership scheme.
Check out www.clapa.com