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|Head and brain injury information signpost|
The United Kingdom Acquired Brain Injury Forum (UKABIF), together with UNISON, Britain’s biggest trade union, have produced the ‘Head and Brain Injury Information Signpost’. This Signpost has a number of categories, as below and will direct you towards many websites and resources.
This resource will continue to build – if you have any suggestions for content to add to the page please email firstname.lastname@example.org
Acquired Brain Injury (ABI) is defined as non-degenerative injury to the brain occurring since birth. It can be caused by an external physical force or by metabolic derangement. The term ‘acquired brain injury’ includes traumatic brain injuries, such as open or closed head injuries, or non-traumatic brain injuries, such as those caused by strokes and other vascular accidents, tumours, infectious diseases, hypoxia, metabolic disorders (e.g. liver and kidney diseases or diabetic coma), and toxic products taken into the body through inhalation or ingestion.
General information about the brain
Essential details about the effects of a brain injury
Resources you can purchase from the Child Brain Injury Trust to learn about brain injury
It can be difficult to know what to do, what to expect, and how to prioritise when someone has just suffered a brain injury. Here are some pointers for the first stages after someone suffers an acquired brain injury:
1. Check your rights
Brain injury happens suddenly. Not only does it mean that a victim and carer may no longer be able to work, but care can be expensive. Since it is important that you receive the best possible care, it is advisable to find out which benefits patients and carers are entitled to.
Here is information from The Brain Injury Group to get you started. Please visit the Financial Support and Welfare signpost for more information on this topic.
2. What the hospital experience might be like
It can be overwhelming to be suddenly thrust into a medical environment, hearing terms you’ve never heard before, and meeting various practitioners. Here the Brain Injury Hub provides a list of different hospital staff you might (or should) encounter and what they do.
Although this list is geared towards child patients, the same people treat adults too.
3. Sorting out rehabilitation
Whilst in hospital an ABI patient will receive some rehabilitation according to their ability. When they leave hospital, it is really important that they continue to receive rehabilitation.
First and foremost this means physical rehabilitation, which is performed by a physiotherapist. There is also rehabilitation to help them practise everyday routines again. This is done by an occupational therapist. There are other forms of rehabilitation you might also have to consider such as speech therapy and psychology.
Whilst it is important not to neglect one form of rehabilitation in preference of another, do not be overwhelmed by the number of different forms that there are. There are qualified professionals who will advise you on this.
The Children’s Trust explains many different therapies available to ABI patients. Although this information is also geared towards children, the same information applies to adults too.
For more information on rehabilitation, please visit the Rehabilitation signpost
4. Make sure your house is suitable
After suffering an ABI, an individual might be physically impaired. When they return home you will need to make sure the house has been adapted to their needs. How you need to adapt the home will depend on how they have been affected. For example, if they find it difficult to walk up stairs, you might need to install a handrail.
Headway has a section on adaptations to the home on this page
You can also apply for a means-tested grant to help cover costs
5. Thinking long-term
One problem with thinking long-term when it comes to brain injury is that it is hard to predict anything in the long-run. Different people respond to therapy at different speeds, and with varied success. It is important to take each day as it comes and to be well-informed.
Here Brainline outlines what you might expect in the long-term
A person who suffers brain injury will often end up in difficult situations in which they need to speak out, or need someone to speak up for them. They might need to advocate for better healthcare services, or better legal representation. Below you will find some useful advocacy resources.
This support directory from Patient allows you to search thousands of support groups and services across the UK
Patient Advice and Liaison Service (PALS) 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. Find your local PALS: www.nhs.uk
Here is some more information about what advocacy is
Brainline also provides a useful advocacy toolkit on their website
For confidential advice on anything related to brain injury you can call these helplines or alternatively send email enquiries
Headway UK helpline: 0808 800 2244 or email: email@example.com
Child Brain Injury Trust Helpline: 0303 303 2248 or email: firstname.lastname@example.org
Brain Injury is BIG helpline: 01483 770999 or email: email@example.com
The Encephalitis Society helpline: 01653 699599 or email them via this page http://www.encephalitis.info/about-us/contact-us/
One Punch UK supports victims and families of ‘one punch’ assaults and acquired brain injuries – email: firstname.lastname@example.org
There are also a number of support groups across the UK which provide specialist support and services for brain injury survivors
Here you can search for local support groups run by Headway the brain injury association
The charity Thrive uses gardening as therapy whilst providing a social environment for disabled people
When a child has a brain injury they might experience difficulties keeping up with classmates if and when they return to education. Children with acquired brain injuries may need a Statutory Assessment to help them. The links below give further information and advice.
Information about returning to education after ABI
Factsheet about returning to education after brain injury
Studying at university with an acquired brain injury
Education resources for professionals
It is important that teachers are aware that ABI can affect both the behaviour and capabilities of a child, and that they adapt their teaching methods as necessary. Here are some resources to help with this.
Behavioural effects of acquired brain injury that can impact upon education
Detecting brain injury in a child and how special educational needs teachers can support them
Teaching strategies for students with brain injuries
More strategies for teaching students with brain injuries provided by Ferris State University
SHIPS – Supporting Head Injured Pupils in Schools – www.shipsproject.org.uk
(SHIPS supports young people who have sustained an ABI in Bristol, the South West of England and South Wales. They work closely with schools and teachers and run groups for parents too. SHIPS are also working to build a network of similar services across the UK.)
Rehabilitation describes the methods used to enhance and build on a person’s natural recovery following an acquired brain injury. Different brain injuries can cause different degrees of physical impairment. Thanks to ‘brain plasticity,’ the brain is able to build new pathways to help us move again, so it is important to learn about how rehabilitation might help you recover best.
General information about rehabilitation
The Brain Injury Rehabilitation Trust has a library of information which includes this page about rehabilitation http://www.thedtgroup.org/brain-injury/information-for-service-users-and-families/about-rehabilitation/
Headway Approved Providers www.headway.org.uk/approved-care-providers.aspx
UKABIF Directory of Rehabilitation Services www.ukabif.org.uk/member-directory/
Rehabilitation for Children:
The Children’s Trust, Tadworth Surrey – residential and community-based rehabilitation services for children and young people with a brain injury’
Chailey Heritage Clinical Services (CHCS), Sussex www.chf.org.uk/foundation-what-we-do.html
QEF neurorehabilitation services, Surrey
Commissioning Guidance for Rehabilitation
This is a link to guidance produced by NHS England in 2016. It is intended for use by clinical commissioning groups to support them in commissioning rehabilitation services for their local population. It may also be of use to others with an interest in rehabilitation. The document outlines:– What rehabilitation is, i.e. scope, breadth and depth. The components of good quality rehabilitation. How to know whether the services that are being commissioned are of good quality. How to compare rehabilitation services locally, regionally and nationally. The guidance also provides access to a great many resources within its reference list, hyperlinks and comprehensive appendices.
Resources for getting help with care
Here is some information about finding care for someone after they leave hospital
Self-directed support – for if you would rather be independent and have a budget to get help instead of social services being involved
Approved care providers – a list of units which have been assessed against standards devised by Headway to ensure they provide appropriate specialist care for brain injury survivors. This includes hospitals, rehabilitation centres, residential homes and respite care.
Care providers in certain areas – a system that searches for care, charity shops, headway groups, or nearby solicitors
Accommodation or home based services offered by the Disabilities Trust Group
An explanation of what the NHS offers in order to help with caring
Continuing care – This Headway page explains the different types of post-hospital care and how to go about getting it
Breaks for children – so that children can get away, and their carers get respite
Financial Support and Welfare
Suffering a brain injury can affect your financial situation, be it because you can no longer work, or because you have to support someone else who has suffered brain injury.
Here is a list of grants provided by charities and organisations for brain injury survivors or their carers:
Headway provide emergency grants of up to £500 www.headway.org.uk/emergency-fund.aspx
The Paul Bush Foundation Trust was set up by Bush & Company Rehabilitation in 2012, to assist those with an acquired physical disability, as a result of an accident or birth injury to improve their physical, psychological and emotional well-being via the provision of grants to address individual needs. Please see the website for details and an application form http://www.bushco.co.uk/the-paul-bush-foundation-trust/
Brain Injury is BIG has set up a grant scheme to assist with providing equipment or therapies for severely brain injured individuals in hospital, rehabilitation, or long term care, or financial help with transport or accommodation costs. The grant is only available to applicants living in Great Britain in those cases where the funding required is not met by the Clinical Commissioning Group, NHS England or other relevant body. Grants of up to £500 are available for: Specialist equipment, Therapy assessment/treatment, Emergency Accommodation costs/Travel costs incurred in visiting relatives in hospital or rehabilitation
Contact a Family produces a list of organisations, which give grants to families with a child with a disability. Many of these specify that applications should be made by a professional on behalf of the family.
Tel: 0808 808 3555
The Family Fund helps families on a low income, caring at home, for a severely disabled or seriously ill child, under the age of 16.
Tel: 0845 130 45 42
The Roald Dahl Foundation gives grants of up to £500 to families caring for a child with a neurological condition or to young people up to 25 years of age. Applications should be made by a Social Worker or health professional. Families must be on a low income. Further guidelines and applications forms from:www.roalddahlfoundation.org.uk
Cerebra gives grants to help children who have disabilities because of a brain related condition or injury. The grants are for equipment or resources and are for children up to 16 years of age.
Tel: 01267 244216
Children Today provides grants for vital, life-changing and specialised equipment for children and young people with sickness or disabilities across the UK.
Tel: 01244 335622
The Child Brain Injury Trust runs a Small Grants Scheme, giving people with brain injury or their siblings up to £100 towards social activities
The Child Brain Injury Trust also has the Mary Radnoti-Dwyer Education Assessment Grant which gives up to £350 towards an education assessment or appeal
Some people might not be able to afford long-term or emergency care, so they set up a fundraising page to raise money for it via JustGiving or GoFundMe
Following brain injury you may be entitled to certain benefits or exemptions that aid in caring for an ABI victim
Disability Rights UK explains your rights with regards to employment education, benefits, tax exemption and more.
If you or someone you know has had a head or brain injury seeking legal advice can help you in many ways. You may not realise that you have a legal case until you talk this through with a professional. Experienced firms are very knowledgeable about early access to rehabilitation and can provide some support and advice.
The Association of Personal Injury Lawyers www.apil.org.uk
UKABIF Approved Lawyers List https://www.ukabif.org.uk/business-directory/wpbdp_category/approved-lawyers/
The Child Brain Injury Trust list of approved lawyers http://childbraininjurytrust.org.uk/legal-support-service/
Headway Legal Advice https://www.headway.org.uk/about-brain-injury/further-information/legal-advice/
Headway’s comprehensive guide to claiming compensation after suffering brain injury https://www.headway.org.uk/media/3990/claiming-compensation-after-brain-injury-e-booklet.pdf
Information from Citizens Advice on personal injury and making claims https://www.citizensadvice.org.uk/law-and-rights/legal-system/personal-injury/
UNISON members can contact the UNISON legal service for free legal advice and representation on Serious injury – including brain and spinal cord injuries – on 0800 0 857 857 or www.unison.org.uk
Here is a list of publications to help you learn more about living with brain injury. This includes factsheets, books people have written about their own experiences with brain injury, and self-help books on brain injury
Headway UK literature – 0115 9240800 call for booklets or go to https://www.headway.org.uk/about-brain-injury/individuals/factsheets/
Lash and Associates Publishing – This is a US website which provides a wide range of publications and information as well as a blog – all about brain injury www.lapublishing.com
The Brain and Spine Foundation produce a series of publications which can be downloaded from their website http://www.brainandspine.org.uk/our-publications
Our Journey: A resource to keep all your child’s important information in one place
‘Encephalitis in Adults: A Guide’ outlines the consequences of the illness, services that can help, and how to get help
Brain injury Rehabilitation Trust Guide to Living for adults with brain injury
Self Help 4 Stroke – a self-management guide for people who have had a stroke
The Independence Pack – to help plan leaving hospital
My Stroke of Insight – Jill Bolte Taylor is a neuroanatomist who suffered a stroke, and studied it as it happened.
Child Brain Injury Trust Factsheets http://childbraininjurytrust.org.uk/how-we-help/parent-and-professionals/factsheets/
Getting to know Childhood Encephalitis handbook; https://edendoratrust.org/what-we-do/#1537799408749-f6f485fe-4f7d
Touching Distance – James Cracknell and Beverley Turner www.amazon.co.uk/Touching-Distance-James-Cracknell/dp/1780890931
Brain on Fire – Susannah Cahalan www.amazon.co.uk/Brain-On-Fire-Month-Madness/dp/0141975342
Where is the mango princess: A journey back from brain injury – Cathy Crimmins www.amazon.com/Where-Mango-Princess-Journey-Injury/dp/0375704426
Running Free: Breaking Out from Locked-in Syndrome – Kate Allatt www.amazon.com/Running-Free-Breaking-Locked-In-Syndrome/dp/1908006641
Life After Brain Injury: Survivors’ stories By Barbara A. Wilson, Jill Winegardner, Fiona Ashworth (2103)
Head Injury: A Practical Guide – Trevor Powell http://www.amazon.co.uk/Head-Injury-A-Practical-Guide/dp/0863883257
How can we talk to our children about Brain Injury? – Jo Johnson
Textbook of Rehabilitation. Barnes MP, Ward AB. (Eds) Oxford Medical Publications, Oxford, 2000
Handbook of Neurological Rehabilitation. Greenwood R, McMillan T, Barnes MP, Ward CD (Eds). Psychology Press, Hove 2002
Community Rehabilitation in Neurology. Barnes MP, Radermacher H (Eds). Cambridge University Press, Cambridge 2003
Oxford Handbook of Rehabilitation Medicine. Barnes MP, Ward AB (Eds). Oxford University Press, Oxford 2005. Oxford Handbook of Rehabilitation Medicine. Barnes MP, Ward AB (Eds).
Oxford Handbook of Clinical Rehabilitation. Ward AB, Barnes MP, Stark SC, Ryan S (Eds). Oxford University Press, Oxford 2009
Books for Children:
Elvin the Elephant who Forgets An illustrated book, suitable for younger children, that shows the struggles, emotions and confusion following an acquired brain injury. – Available from http://www.lapublishing.com/elvin-elephant-tbi-child/
Gilley the Giraffe … Who Changedhttp://www.encephalitis.info/files/4113/4936/5440/Gilley_book_final_sm.pdf
Jo Johnson publications ‘My Parent has a Brain Injury’ www.amazon.co.uk/My-Parent-Has-Brain-Injury/dp/0955758831
‘The injury that made me commit a crime’ By Stephen Menon, BBC Stories | A head injury not only left Byron Schofield physically and mentally scarred for life – it also set him on the path towards prison.
Mum Joins MPs Lobbying For Better Understanding Of Brain Injuries After Son’s School Battle By Jasmin Gray, Huffington Post | When 10-year-old Anson Mackay was left with a brain injury after being beaten over the head by one of his fellow primary school pupils, it was 10 months before he was well enough to return to a classroom.
Exclusive: Single protocol needed to treat brain injuries in sport, urges report By Jeremy Wilson, Telegraph
An Introduction to Brain Injury
Speech and Language Therapist Alison Nickson introduces common communication impairments individuals may experience following a brain injury or neurological condition.
Christchurch Group Physiotherapist, Sarah Cameron, explains how individuals with neurological difficulties following acquired and traumatic brain injury, progressive neurological conditions and stroke can suffer from vision problems. These visual problems can include ocular motor control, muscular control, visual field loss and abnormalities, visual perception loss, hemianopia, and homonymous
Professor Mike Barnes, Clinical Director of Christchurch Group introduces neurological rehabilitation – what it is, how it helps restore function to individuals following a brain or spinal injury, stroke or neurological condition.
Christchurch Group lead therapist Su Crossland explains how individuals with spasticity as a result of a brain or spinal injury, stroke or neurological condition can be helped by seating and posture management.
Professor Mike Barnes discusses the management of spasticity following a brain or spinal injury or neurological condition.
Approximately one million people live with the effects of an Acquired Brain Injury (ABI) in the United Kingdom (UK) at an estimated minimum cost of £4.1 billion. The United Kingdom Acquired Brain Injury Forum (UKABIF) have produced a manifesto for acquired brain injury called ‘Life After Brain Injury: A Way Forward.’
Denise Slack, clinical lead (OT), gives an introduction to vocational rehabilitation in this short video. Vocational rehab (VR) encompasses interventions that are focused on helping individuals with a health condition or impairment to overcome barriers to work and so remain in, access or return to employment.
Jill Bolte Taylor is a neuroanatomist who suffered a stroke, and somewhat studied it as it happened. Here you can hear her speak about it
See the publications signpost for a link to her book
Resources and blogs developed by brain injury survivors
Although experts are often the most qualified to give advice to patients, it is useful to learn about acquired brain injury from brain injury survivors themselves. Learning about other people’s experiences is important because not every one experience is the same, yet it also reassures us that we are not alone.
Real Stories from brain injury survivors
A blog made by an American TBI survivor with podcasts too:
Stories from caregivers of brain injury survivors
Over 1000 brain injury survivor stories on Pinterest. You will need an account to access them
Organised by Headway East London – Who are you now? – Life Stories of brain injury survivors
Personal stories as told by The Eden Dora Trust
Returning to everyday activities
When you suffer brain injury, it can become harder or no longer possible to complete routine activities. However, after time, we can regain the ability to complete these tasks. Here are some pointers that might help with everyday activities.
Driving again – click here to find out what you need to know about driving after suffering a brain injury
Disabled badge – if you are physically impaired by your brain injury, you might be entitled to a blue badge for parking
Returning to work – the practicalities
Travel insurance – you might need more travel cover after brain injury
Here is a list of organisations that can help brain injury survivors
Headway – www.headway.org.uk
Care for the carers www.cftc.org.uk
Carers UK www.carersuk.org
The Brain Injury Group www.braininjurygroup.co.uk
The Child Brain Injury Trust www.childbraininjurytru
The Encephalitis Society www.encephalitis.info
Post-traumatic hypopituitarism www.headinjuryhypo
The Children’s Trust www.thechildrenstrust.org.uk
Brain and Spine Foundation www.brainandspine.org.uk/
The Eden Dora Trust for Children with Encephalitis https://edendoratrust.org/