brain injury in europe from the perspective of service users and families evelyn vincent
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Evelyn Vincent
Founder member of Headway Basingstoke 1982. Chairman since 1984
Board member Headway UK 16 years
Currently Deputy Chair – Headway UK
Chair of Membership Committee – Headway UK
Headway UK representative on:
Brain Injury Confederation for Europe (BIF)
Established 1999 by 7 founding Associations:
Le Noyau (Belgium)
D.B.I.A. (Denmark)
U.N.A.F.T.C. (France)
Coordinamento Nazionale Associazioni Trauma Cranico (Italy)
FEDACE (Spain)
FRAGILE (Switzerland)
Headway-UK (The United Kingdom)
About BIF-EC: Brain Injured and Families – European Confederation
Non-profit-making international Association registered in Brussels (A.I.S.B.L) 2000
Full member of the European Disability Forum since 2000
Member associations from 18 European countries (E.U. and E.E.E.)
About BIF-EC: Brain Injured and Families – European Confederation
Why was BIF established?
To raise awareness of brain injury by creating a common European platform through co-ordination and co-operation between national associations of people with brain injury and their families.
BIF – Current Members
Austria
Belgium
Czech Republic
Denmark
Finland
France
Germany
Iceland
Ireland
Italy
Netherlands
Poland
Portugal
Slovenia
Spain
Sweden
Switzerland
UK
BIF Objectives
To create a European confederation to be the authoritative voice of all associations providing support and services to brain injured people and their families.
To gain recognition of brain injury as a “specific disability” in each European Country.
To capture, evaluate and analyse data on the number of people in Europe who have had a serious brain injury.
To emphasise the requirement and necessity for re-educating, rehabilitating, and reintegrating of brain injured people in all the European Countries.
BIF Objectives Cont.
To gain recognition that families with brain injured people are also affected and need assistance.
To share best practice and experience amongst member organisations.
To actively participate, within European Disability Forum (EDF) to promote equality and non-discrimination for disabled people to secure guarantee and protection of all their rights.
About SHG-SH - Austria
Created federation for all self-help teams for traumatic brain injury in 2003
Publishes newspaper called “SHT-News”
Provides the following services:
Helpline
Psychological Support
Social Services
Non-profit association founded in 2007
Established first internet web page about brain injury in the Czech Republic
Aims to :
“Contribute to understanding of brain injury; provide information and support for people with traumatic or other brain injuries; their families and carers”
About CEREBRUM – Brain injured and families - Czech Republic
• Helpline• Psychological support• Cognitive-Social
rehabilitation program for people with Acquired Brain Injury
• Support Groups
Services Provided by CEREBRUM
• Self-help groups• Educational Activities
(workshops, seminars, conferences)
• Interactive website • Publications• Organising events to
raise awareness
About Hjerneskadeforeningen - Denmark
1985 Hjerneskadeforeningen - The Danish Brain Injury Association established
2006 – first Headhouse / Clubhouse development project opened. Funded by The European Committees Equal Project and Danish Labour Market Authority
Headhouse members admitted only if they are ready to seek employment after their time spent in the Headhouse
About U.N.A.F.T.C. - France
1985 - first Association (AFTC) established.
1986 - UNAFTC founded due to growth in number of associations.
2011 - 51 AFTC Associations of families with brain injured relatives / 63 centres for brain injury survivors.
Services providedU.N.A.F.T.C. - France
Help-line (consulting)
Psychological support
Network of local support groups
About Hungarfar - Iceland
Established by relatives of TBI patients and professionals
Club member meetings held during winter months
Working towards support groups for relatives.
Services provided: Helpline
About Headway Ireland
Established in 1985 to provide support and services to people affected by brain injury
Mission: To bring about positive change in the lives of those affected by an acquired brain injury
Working to heighten public and political awareness of acquired brain injury and the impact it has on individuals, families and carers
Services offered by Headway Ireland
Information and Support
Helpline
Psychological support
Social services
Supported employment services
Day rehabilitation services / rehabilitative training
Vocational rehabilitation
Community integration, rehabilitation, support
About Novamente - Portugal
Established by relatives of TBI survivors and professionals
Recognised by the Portuguese government as the representative of Portuguese families with a TBI survivor
About Drustvo Vita - Slovenia
Founded in 1992
1992-2005 member of Soncek Association for cerebal paralysis – use of their building to hold day centre, start to employ staff to run programs
Day centre, living unit and domestic help for disabled offered
2010 bought building sponsored by FIHO to host day centre and services
Services provided by Drustvo Vita
Help-line
Psychological support
Social services
Supported accommodation
Rehabilitation centers
Vocational rehabilitation
Community rehabilitation and support
Outreach team
Rehabilitation camps, trips, educating-schools, family, students (mentoring)
About Fedace - Spain
1995 established to assist those with ABI, their families and to raise awareness of ABI in Spain
Started with 8 associations, now have 31 associations in 2010 offering support and rehabilitation programs for families
A member of CERMI – The Spanish Committee of Representatives of Persons with Disabilities
Services Provided Fedace
Helpline
Psychological support
Social services
Rehabilitation centres
Community rehabilitation and support
About Hjarnkraft - Sweden
Founded by Gertrud and Bengt Ost whose daughter acquired a serious brain injury after a car crash.
Services provided: Helpline
Headway - Objectives
To increase awareness of brain injury
To initiate activities and campaigns to reduce the incidence of brain injury and improve services for survivors, families and carers
To provide information & support
To promote improved approaches to screening, acute care, assessment, rehabilitation and community re-integration
Headway - Objectives
To assist people with brain injuries to return to independent living
To support survivors to attain the highest possible quality of life
To work with existing groups and branches and help establish new groups and branches throughout the UK
Services provided by Headway UK
Support to our network of 116 Groups and Branches
UK Nurse-led Helpline
Award winning information leaflets / publications
Training: Certificate in Brain Injury Studies
Campaigning / awareness raising
Access to Government, Parliament and Key Stakeholders
Governance / Standards / Approved Providers scheme
Services Provided by Headway Groups
Day services
Housing
Hospital support
Carers meetings
Family support
Counselling
Respite care
Drop-in centres
Education courses
Outreach/Community Support
Employment support
Benefits advice
Case Management
Common Themes across Europe
Lack of rehabilitation services
Discrimination / lack of understanding
Limited opportunities for employment / return to work
Financial difficulties for survivors / families
The search for meaningful / stimulating activities
Stresses and strains of carers
Carers who are no longer able to cope