Brain injury in Europe from the perspective of service users and

families

Evelyn Vincent

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.

SHG-SH : Austrian Federation of Traumatic

Brain injured People

BIF Member Countries - Austria

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

Czech Republic - CEREBRUM

BIF Member Countries

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

Hjerneskadeforeningen - Denmark

BIF Member Countries

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

France - UNAFTC

BIF Member Countries

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

Iceland - Hungarfar

BIF Member Countries

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

Ireland – Headway Ireland

BIF Member Countries

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

Portugal - Novamente

BIF Member Countries

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

Drustvo Vita - Slovenia

BIF Member Countries

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)

Fedace - Spain

BIF Member Countries

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

HJARNKRAFT - Sweden

BIF Member Countries

About Hjarnkraft - Sweden

Founded by Gertrud and Bengt Ost whose daughter acquired a serious brain injury after a car crash.

Services provided: Helpline

United Kingdom – Headway UK

BIF Member Countries

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

Summary

Very mixed picture across Europe

A few well developed organisations

Most small and under-resourced

Good statutory services in some member States.

Many States have very little provision

By working together in BIF we can share best practice and achieve more for survivors and families