Twenty years ago, BIF “The Brain Injured and Families, European Confederation” was created. We owe it to the initiative of Admiral Jean PICART, then President of UNAFTC, who lay the foundation for BIF after a seminar he organized in Paris, on the 17^th and 18^th March 1998.

At the end of the Seminar, which brought together 20 representatives from 7 European countries (United Kingdom, Belgium, Sweden, Norway, Denmark, Spain and France), a unanimous “consensus” emerged “to combine forces and take joint action to defend, within European organizations, the rights and interests of traumatic brain injured people and their families”.

 This consensus resulted from four fundamental points presented by Admiral Jean PICART which concluded the afternoons discussions:

1.    Traumatic Brain Injury is a specific and invisible disability, impacting the mind. It is an “unseen affliction”;

2.    There are very few established institutions available to accommodate large numbers of T.B.I. patients;

3.    TBI patients need to be continuously monitored, from the point of their accident to their later social reintegration. There are shortcomings and gaps along this journey that must be fulfilled;

4.    Given the significant number of TBI sufferers and challenges that they face, there is no adequate representation for them or their families in European associations and NGOs covering disability. There is no one to effectively guide decisions which are likely to affect them.

It was decided that a small working group, made up of 4 to 5 people, would ensure the realization of this project.  Rita REES from HEADWAY (UK) agreed to lead the group – with support from Gérard GUENEAU (UNAFTC, France), Philippe PALATE (NOYAU, Belgium) and Niels-Anton SVENDSEN (DBIA, Denmark).

The team worked fast – on the 2^nd March 2000, the Statutes of the European Confederation BIF-EC was published in the “Belgian Monitor” – the equivalent of our “Official Journal”. On 2^nd June 2000, the BIF Confederation was elected “full member” of the European Disability Forum and on the 8^th June 2001, Rita REES, then President of BIF, was elected onto the EDF Board of Directors …

Jean PICART was delighted by news of BIF’s 20th Anniversary celebration in Lyon on 4^th October 2019.

Unfortunately, Parkinson’s disease, which he bravely fought against, came out stronger and he passed away on the 19^th December 2019.

We would like to thank you Jean, for this beautiful project – creating the European Confederation, BIF, where you knowingly involved us, always supported and accompanied us.

Our only wish, and we know that you share it, is that the European Confederation of BIF continues, enriching bonds of friendship and solidarity between its members, actively participating at a national and European level, improving awareness and education surrounding head trauma, the life experiences and needs of family carers – and finally – continuing to participate in the beautiful and effective work of the European Disability Forum.

We know perfectly where you are now, always keeping us warmly within your thoughts.

Farewell Jean…

Gérard Guéneau & Robert Sangy (UNAFTC)

A study conducted by Fundación ONCE with the European Social Fund has been published and identified that 72.64% of people with ABI experience difficulty with returning to work due to their disability.

The report was presented in December 2016. The study involved collating data from Spanish people with ABI and included 400 questionnaries, 24 interviews  and 3 focus groups.  The following was discovered:

• 42.8% retired because of ABI.
• 23% are looking for a job.
• 13.5% currently work.

*Currently 80,224 people in Spain live with ABI at the time of their working life.

Age was found to be a distinguishing factor with those returning to work: 61.97% of people with ABI were active between age 16 and 32, compared to only 14.56% of people aged 50+ who worked or were actively looking for a job.

It is clear that for those who suffer from a brain injury, the road back into employment is precarious. Rehabilitiation is essential as well as processes focused on assisting individuals with ABI to get back into work.

FEDACE proposed some of the following solutions to address this matter:

• Focus on work placement rehabilitation as soon as possible (during the first 8 weeks after the brain injury) to help prepare the individual to return to work, providing any support that they may need.
• Prioritise reintegrating the person into their previous job role, before exploring alternative employment options.
• Put controls in place with businesses to reduce the number of individuals unable to return to their job after an ABI.
• Assess the job requirements and make adaptations as needed in order for those with ABI to fulfil their responsibilities.

The full report is available on fedace.org.

References:

https://fedace.org/estudio_empleo_dano_cerebral.html

https://fedace.org/index.php?V_dir=MSC&V_mod=shownews&V_idmod=62&idn=1558

Top picture: Presentation at CEADAC.

A QUARTER OF A CENTURY OF ACTIVITY BY THE FINNISH AIVOVAMMALIITTO 

The Traumatic Brain Injury Association of Finland celebrates its 25th anniversary this year. Today it is an organization that is highly regarded by its members and circles of healthcare professionals alike. To mark the occassion, let us recap on the history of Aivovammaliitto and its notable achievements to date:

Aivovammaliitto

Aivovammaliitto is a non-profit organization providing multiple services.  It operates as the umbrella body for regional organizations supporting people with brain-injury, as well as their families and friends and has formed a close realtionship with  healthcare systems focused on traumatic brain injuries.  Aivovammaliitto has a budget of over half million euros with close to 90% of this money coming from the government-owned gaming and betting monopoly.

Aivovammaliitto was started by four separate regional associations before the national body was formed in 1992 to coordinate their activities (Aivovamma = traumatic brain injury; liitto = association).  There are now nine regional organizations in Finland covering almost the whole country as well as numerous local activity groups. All the work carried out by the regional organizations and activity groups is based on voluntary community work.

Aivovammaliitto quick facts:

• Aivovammaliitto has 5 full-time employees and 1 part-time employee.
• The Board is comprised of 7 volunteer members and the General Manager who acts as Secretary of the Board.
• There are approximately 10 annual board meetings with the summit being the General Assembly that convenes twice a year.
• The number of delegates in each regional association is determined by the number of its members.
• The current membership figure is over 2,200. Within four years, this number has increased by 20%.

Aivovammaliitto has recognised the small number of members (compared to the number of people with TBI and their families) and launched special measures to increase membership.  They give special attention to family and friends of injured members.

COOPERATION WITH PROFESSIONALS

Current Care Guidelines for hospitals

In recent years Aivovammaliitto has actively worked with brain injury professionals including neurologists, neuropsychologists, emergency personnel and so forth. In Finland, numerous sectors of medicine have formulated what is known as the ‘Current Care Guidelines’ covering a vast number of illnesses, injuries and traumas to have a nation-wide code of conduct of the best possible practices. These are used to improve treatment and ensure the best practices become a nationwide standard to offer the same high level of care all over the country.

Aivovammaliitto initiated and conducted a series of seminars targeted at the main hospitals, to discuss and formulate the best practice and overall care given to those with a brain injury.  There were three annual meetings held under the theme of ‘Consensus’ which focussed on the ‘Current Care Guidelines’ for adults with traumatic brain injury.  Today, the guidelines are now followed all over the country.  One main emphasis was to ensure that strict practices are followed straight after an accident when a person is admitted to emergency care.  This was to make certain that the injured person would receive the best possible intensive care including MRI (Magnetic 2 Resonance Imaging), which would also help the injured individual at a later stage when the case was handled by an insurance company.

Brain Injury & Education

Aivovammaliitto has created and trained a network of people to educate students, emergency personnel and healthcare professionals about brain injury through a series of lectures.  Their educators are individuals who have suffered from a brain injury themselves and who share their challenges and experiences.  They provide more than a hundred sessions annually on voluntary basis. Experiential based educators dates back to 1988-1991, when the National Rheumatism Union managed the national ‘Patient Lecturer’ project. An example of Aivovammaliitto’s approach to the core subject was the 25 Year Jubilee Symposium which took place in March. The event was organized in cooperation with Invalidiliitto (the Finnish Association of People with Physical Disabilities). The two day event was aimed at healthcare professionals, students as well as the members of Aivovammaliitto and Invalidiliitto.

Assistance to members & Adaptation Training

Aivovammaliitto offers various services to brain injured people and their families. There is long tradition of organizing special events that are called ‘Adaptation Training’. These courses are often a five-day event. Assisted by outside healthcare professionals, the participants receive explanations on what brain injuries are about and how they affect a persons daily life. There are also other types of adaptation training events aimed to give advice on how to cope with fatigue, relationships between a husband and wife, families, young injured people, etc. The regional associations and the local action groups organize regular ‘Peer Support’ meetings which are open to everybody.  These include discussions on relevant topics and various outings are also arranged, for example picnics, bowling, theater and so forth.