Sources of Help
Outside sources of help and information
Headway is dedicated to helping clients, carers and professionals obtain more information and access to support – below are some organisations and links that we hope will be useful.
If you have any further questions or have found other helpful sites then please give us a call or share via email or our Facebook page. (links)
Please note that Headway is not responsible for the content of external websites. Links may open in a new window or tab.
Acquired brain injury
Acquired Brain Injury Managed Clinical Network (ABIMCN)
The National Managed Clinical Network (NMCM) for Acquired Brain Injury (ABI) is a Scottish National Network established by the National Services Division (NSD) in 2007. Its aim is to improve access to and the quality of services for children and adults with Acquired Brain Injury (ABI).
AVM Support UK
Tel: 01670 737 231
Provide various support services for people affected by Arteriovenous Malformation (AVM).
Brain and Spine Foundation
Tel: 020 7793 5900
Fax: 020 7793 5939
Helpline: 0808 808 1000
Research, education and information. Booklets on a wide range of neurological conditions and symptoms and an online discussion forum. Helpline is staffed by neuroscience nurses.
Brain and Spinal Injury Charity (BASIC)
Tel: 0161 707 6441
Fax: 0161 206 4558
BASIC provides a specialist resource at the Neurocare Centre for people and their families in crisis following a traumatic brain injury or neurological diagnosis.
Chest Heart and Stroke Scotland (CHSS)
Advice Line: 0845 077 6000
CHSS improves the quality of life for people in Scotland affected by chest, heart and stroke illness, through medical research, influencing public policy, advice and information and support in the community.
Helpline: 0845 130 7172
Fax: 01908 313 501
This is a new charity for young stroke survivors aiming to provide access to physio and exercise, information and counselling and advice on further education and job opportunities.
IIH UK aim to provide the best possible support network for IIH sufferers and their families, to raise awareness and understanding of IIH within the general public and medical community and to champion and support medical research into finding a cure for the condition.
Tel: 0808 80 10 388
Meningitis Now is the new name for Meningitis UK and the Meningitis Trust. Our goals remain the same – saving lives and rebuilding futures.
Tel: 01733 555 988
Shine is a charity dedicated to supporting individuals and families who face the challenges arising from spina bifida and hydrocephalus. We provide specialist support to anyone living with these conditions, as well as to parents, families, carers and professional health and social care staff. With a community of 75,000 individuals, families, friends, and professionals, Shine also provides a platform for members to share achievements, challenges, and information on living with spina bifida and/or hydrocephalus.
Helpline: 0303 3033 100
Tel: 020 7566 0300
Textphone: 020 7251 9096
Fax: 020 7490 2686
The Stroke Association is the only UK wide charity solely concerned with combating stroke in people of all ages. The Stroke Association funds research into prevention, treatment and better methods of rehabilitation; campaigns to increase knowledge of stroke and improve stroke services; and act as a voice for everyone affected by stroke. Stroke survivors and family members are supported directly through its Life After Stroke Service. The Stroke Association also provides a range of informational publications, a stroke helpline and an information service for anyone affected by stroke.
The Brain Tumour Charity
Helpline: 0808 800 0004
The Brain Tumour Charity is the UK’s largest dedicated brain tumour charity. We fund scientific and clinical research into brain tumours and offer support and information to those affected, whilst raising awareness and influencing policy.
Patient Advice and Liaison Service
The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers.
Scottish Independent Advocacy Alliance
Advocacy helps vulnerable people have their voice heard and enabling them to express their own needs and make their own decisions.
Find an advocate in your area: www.siaa.org.uk/component/option,com_sobi2/Itemid,57/
Awareness and prevention
Bicycle Helmet Initiative Trust
Tel: 0118 958 3585
The Bicycle Helmet Initiative Trust is committed to saving young people’s lives by promoting safe cycling and, in particular, the use of cycle helmets.
Brake – the road safety charity
Tel: 01484 559909
Fax: 01484 559983
Helpline: 0845 603 8570
Brake, the national road safety charity, works to stop death and injury on the roads and to care for people affected by road crashes. Brake also runs educational initiatives and campaigns for tougher laws against dangerous drivers. Brake produces a range of support literature for people bereaved and injured at these particularly devastating times. This literature is distributed by the police forces following every fatal crash and often after a serious injury. Brake also runs a helpline, through which its highly trained operators can support families and friends following the aftermath of a road crash. The helpline provides both emotional support as well as practical information on the many procedures that follow a death on the road. The helpline also acts as a signposting service directing callers to counselling services, trauma therapists and self-help groups.
CO-Awareness is an organisation that supports the many victims of Carbon Monoxide (CO) poisoning and Toxic Combustion (TC) poisoning, their families and friends.
Disability Alliance Education and Research Association
88-89 Wentworth Street
Tel: 020 7247 8776
Fax: 020 7802 8250
Aims to break the link between poverty and disability.
The Neurological Alliance
240 City Road,
Tel: 020 7566 1540
The Neurological Alliance is a wide range of neurological charities which have come together to make life better for people in the UK with a neurological condition. Our aims are to raise awareness of neurological conditions and their impact; inform and influence policy makers about the needs of people with neurological conditions; secure the highest standards of service and improved care for people with neurological conditions; promote research and the dissemination of information about neurological conditions.
Helpline: 0845 4500 355
UK national charity provides emotional and practical support to road crash victims (bereaved and injured) and runs a Helpline which is open from 9am-9pm 7 days a week. Campaign for road safety.
Royal Association for Disability And Rehabilitation (RADAR)
Tel: 020 7250 3222
Fax: 020 7250 0212
Minicom: 0207 250 4119
RADAR is a co-ordinating body with over 500 members associations. It acts as a pressure group on central and local government. RADAR is concerned with every aspect of disibility, but is particularly involved with access, education, employment, holidays, housing, mobility and social services.
Carer and family support
Brain Injury is BIG
Tel: 01483 770 999
Brain Injury is BIG is a support group for people who have loved ones with devastating brain injuries. They may be severely disabled, in a persistent vegetative state, minimally aware/conscious or locked in.
The independent regulator of social care and social work services across Scotland. Regulates, inspects and supports improvement of care, social work and child protection services for the benefit of the people who use them.
Carers UK is a membership organisation of carers, led by carers for carers.
CRUSE Bereavement care
Tel:0870 167 1677
Young persons free phone: 0808 808 1677
HealthtalkOnline – Family experiences of vegetative and minimally conscious states
Extensive information on the experience of having a relative in a vegetative or minimally conscious state. Includes a large number of interviews from family members to support information on critical care, longer term care, impact on family and friends, on-going decisions, death and dying and more.
Princess Royal Trust for Carers
Tel: (020) 7480 7788 (advice line)
Fax: (020) 7481 4729
The Princess Royal Trust for Carers is the largest provider of comprehensive carers support services in the UK.
Helpline: 0300 100 1234
Fax: 01788 535007
Aims to support marriage and family life. Relate has a range of literature and can refer to local branches for individual counselling services.
Website containing over 300 pages with easy to use interactive advice, information and support for unpaid stroke carers.
Children and young people
Brainwave Centre Ltd (Brainwave Centre for rehabilitation and development)
Tel: 01278 429089
Fax: 01278 429622
Design home-based programmes of rehabilitation for children involving both physical and cognitive techniques.
British Institute for Brain Injured Children (BIBIC)
Tel: 01278 684060
BIBIC is a national charity offering practical help to families caring for children with conditions such as autism, cerebral palsy, Down’s syndrome, developmental delay, traumatic and acquired brain injury and specific learning difficulties such as attention deficits, hyperactivity disorder, dyslexia and dyspraxia.
(The) Children’s Trust
Tel: 01737 365 000
The Children’s Trust is a national charity providing residential rehabilitation, community services, information and support to children and young people with acquired brain injury and their families.
Child Brain Injury Trust
Tel: 01869 341 075
Helpline: 0303 303 2248
The Child Brain Injury Trust supports children, young people and families affected by an acquired brain injury, to enable them to achieve their potential.
Contact a Family
Tel: 020 7608 8700
Fax: 020 7608 8701
Helpline: 0808 808 3555 (10am-4pm, Mon-Fri)
Textphone: 0808 808 3556
Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children – no matter what their health condition. We also enable parents to get in contact with other families, both on a local and national basis. Each year we reach at least 250,000 families.
Provide educational services for young people with acquired brain injuries.
Cognitive and behavioural problems
Brain Tree Training
Tel: 01276 472 369
Produce home-based cognitive rehabilitation courses for those with acquired neurological injuries.
Challenging Behaviour Foundation
Tel: 01634 838 739
Provide an info service, fact sheets, support network to improve the lives and conditions of people with learning disabilities and challenging behaviour, their immediate family and carers.
Connecting you with professional support – find a counsellor or psychotherapist near you.
Depression Alliance is the leading national charity for people affected by depression. We provide a range of information and support services & work to reduce the stigma and isolation often associated by depression.
A Resource for Teachers, Clinicians, Parents, and Students by the Brain Injury Association of New York State. Contains a range of tutorials covering different aspects of brain injury. Whilst the materials are aimed at students and young people, they are also applicable to adults.
‘Aphasia now’ is a website started by an aphasia wanted to get in touch with like minded and other sufferers to learn more about the invisible disability.
Aphasia Software Finder
Information about software programs and apps for people with aphasia in the English language.
Association of Speech and Language Therapists in Independent Practice
Can supply details of therapists by region or specific condition.
ARCOS – the Association for Rehabilitation of Communication and Oral Skills
Tel: 0845 122 8697
ARCOS is a national charity. We work with children and adults who have communication and eating (swallowing) difficulties, their families, carers and others involved. ARCOS provides information, advice, practical help, specialist therapy training and other services not readily available elsewhere.
Connect – the communication disability network
Tel: 020 7367 0840
Connect – the communication disability network is a charity for people living with aphasia (communication disability) following stroke, accident or tumour.
Tel: 020 7261 9572
Fax: 020 7928 9542
Helpline: 0808 808 9572
Advice line for people with dysphasia (loss of language following stroke or head injury), their families and professionals. Advice on accessing services, benefits, holidays, equipment and computer technology. Also gives advice on self-help groups and speech therapy.
Headway Emergency Fund
Grants of up to £500 to help families and individuals cope with the practical implications of a sudden catastrophic brain injury.
Independent Living Fund
Tel: 0845 601 8815
Fax: 0115 945 0945
The funds were set up as a national resource dedicated to the financial support of disabled people enabling them to choose to live in the community rather than residential care.
We are a charitable service which helps people access the money available to them – through welfare benefits, grants and other help. Our free, accessible website has been designed to help you find appropriate sources of financial support, quickly and easily, based on your particular needs and circumstances.
APIL (Association of Personal Injury Lawyers)
Tel: 0115 958 0585
APIL (the Association of Personal Injury Lawyers) is an independent, not for profit organisation providing accreditation to lawyers specialising in the area of personal injury law. Website includes a directory of accredited solicitors.
Association of Independent Visitors (UK)
A nationwide group of current and ex Court of Protection Visitors who formed an alliance to work with private clients and their families, solicitors, Deputies and Attorneys in upholding and safeguarding best interests.
British Association of Brain Injury Case Managers (BABICM)
Tel: 01604 879171
BABICM is a professional association that was established in 1996 to promote the development of case management in the field of acquired brain injury.
Criminal Injuries Compensation Authority (CICA)
Tel: 0141 331 2726
Helpline: 0800 358 3601
Fax: 0141 331 2287
The Criminal Injuries Compensation Authority administers the criminal injuries compensation scheme throughout England, Scotland and Wales. We pay compensation to people who have been the victim of a violent crime.
Expert Witness Directory
Helpline: 020 7393 7780
See also: British Psychological Society (BPS)
Tel: 020 7393 7780
Office of the Public Guardian
Tel: 0845 330 2900
The Office of the Public Guardian supports and promotes decision making for those who lack capacity or would like to plan for their future, within the framework of the Mental Capacity Act 2005.
Office of the Public Guardian (Scotland)
The Office of the Public Guardian has a general function to supervise those individuals who have been appointed to manage the financial or property affairs of an adult who lacks the capacity to do so for themselves. The office is based in Falkirk and covers the whole of Scotland
Rehabilitation and care services
British Dietetic Association
Tel: 0121 200 8080
The British Dietetic Association, established in 1936, is the professional association for dietitians. Its aims are to:
advance the science and practice of dietetics and associated subjects
promote training and education in the science and practice of dietetics and associated subjects
regulate the relations between dietitians and their employer through the BDA Trade Union.
British Society of Rehabilitation Medicine (BSRM)
The Society encourages doctors in all clinical specialties to be involved in education and research into the management of disability. Membership of the BSRM is open to all registered medical practitioners interested and concerned with its objectives.
A comprehensive guide to all registered UK care homes, including those for specific needs relating to a brain injury.
Care Choices Ltd
Tel: 0800 389 2077
Care Choices Ltd offers a free residential/care home search service. The company has a database of care homes, nursing homes, elderly accommodation and similar establishments throughout the UK.
Care Quality Commission
Our job is to check whether hospitals, care homes and care services are meeting government standards. Website provides a comprehensive directory of care homes, care in the home services and other primary and secondary health services.
Chartered Society of Physiotherapy
Tel: 020 7306 6666
The Chartered Society of Physiotherapy is the professional, educational and trade union body for the country’s 45,000 chartered physiotherapists, physiotherapy students and assistants. It aims to support its members and help them to provide the highest standards of patient care.
Disabled Living Foundation (DLF)
380-384 Harrow Road
Tel: 020 7289 6111
Helpline: 0845 130 9177
Text phone: 020 7432 8009
DLF are the leading source of information on disability equipment. They aim to give advice and information on any aspect of disability presenting problems through providing an information service and answering queries by telephone and letter. Maintain a large equipment display area, which may be visited by appointment.
ENRYCH supports adults with a physical disability to engage more fully within their local communities. We provide this service through our UK branches by “matching” our members’ requirements to the skills and interests of volunteers and personal assistants
Relatives and Residents Association
Tel: 020 7359 8136
Provides information and support about carehomes.
Tel: 0303 303 0145
Revitalise provides respite care and short breaks for disabled people and carers.
United Kingdom Acquired Brain Injury Forum (UKABIF)
Tel: 0845 608 0788
Aims to promote understanding of all aspects of Acquired Brain Injury and to provide expert input to policy makers, service providers and general public. Website contains a directory of brain injury rehabilitation services.
Other useful organisations
Helpline: 0800 269 545
Did you know that there are 11 million disabled people in the UK, at least 4 million of whom have never been online? AbilityNet is the only charity in the UK that works with people with all disabilities and of all ages, helping them to use computers and the internet to improve their lives at home, at work and in education.
Our mission is to empower consumers through education in the areas of credit, loans, insurance, debt and personal finance. Whether you are looking to take out a mortgage or you are considering a payday loan, we promise to provide the thorough and up-to-date information you need to make the best choice for you and your family.
Equality and Human Rights Commission
Helpline (England): 0845 604 6610
Helpline (Wales): 0845 604 5510
Helpline (Scotland): 0845 604 8810
The Equality and Human Rights Commission champions equality and human rights for all, working to eliminate discrimination, reduce inequality, protect human rights and to build good relations, ensuring that everyone has a fair chance to participate in society.
Money Advice Service
Telephone: 0300 500 5000
The Money Advice Service is a free and impartial advice service set up by the government. The information and advice they provide is sourced from experts and has the sole purpose of providing the UK public with helpful and actionable advice.
NHS Direct / NHS 24 / NHS Direct Wales
Tel: 0845 46 47 (NHS Direct England & Wales)
Tel: 08454 242424 (NHS 24 Scotland)
Website: www.nhsdirect.nhs.uk (England)
Website: www.nhsdirect.wales.nhs.uk (Wales)
Website: www.nhs24.com (Scotland)
Medical advice from qualified nurses.
Royal National Institute for the Blind (RNIB)
Helpline: 0303 123 9999
Supporting people with sight problems
Tel: 020 7619 7100
Helpline: 0808 800 3333
Supporting people with Cerebral Palsy