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a guide
a guide
Published by the Encephalitis Society
a guide
Encephalitis a guide
The Guide was compiled by Elaine Dowell and Ava Easton with advice and assistance from the Society’s Professional Advisory
Panel and members of the Encephalitis Society. A list of books and sources of information used in compiling the Guide are
listed in the back of the handbook.
Designed by: Moving Media Marketing Ltd
Printed by: Team Impression Ltd
ISBN: 978-0-9552180-3-3
Extracts from this Guide may be reproduced for non-commercial purposes on condition that the source is acknowledged.
Whilst care has been taken in the production of this Guide, no responsibility is taken by the Encephalitis Society for any errors
or omissions.
The Encephalitis Society
32 Castlegate
North Yorkshire
YO17 7DT
Telephone: +44 [0] 1653 692583
[email protected]
[Registered charity no. 1087843]
Copyright 2013 The Encephalitis Society
Published by the The Encephalitis Society
Cover photograph: Courtesy of The Encephalitis Society
Encephalitis……….. I knew the word and yet I had no idea what it was or
indeed how to pronounce it. That seems an age ago.
My friend was attacked by a virus and like everyone that encephalitis affects,
it strikes without warning; it also ambushes those surrounding so I suddenly
found myself caught up in a world of medical, physical and emotional issues
that I had no experience of and couldn’t make sense of.
Feeling trapped by my own helplessness and fear I turned to the World Wide
Web and all roads of enquiry led me to one place: the Encephalitis Society.
Here, I found knowledge and support, empathy and patience. Part library, part campaigner and part friend. What
you have in your hand is an extension of that organisation and it is going to be a valuable assistant on your road to
understanding and coping: Part reference guide, part medical journal and part friendship network.
I’m proud and honoured to be writing this foreword because, yes, I still feel helpless sometimes and, yes, I still cry for
my friend but I’m no longer confused and afraid because the Encephalitis Society and their information have given me
strength and the power of knowledge.
I hope you find the same comfort and peace of mind on your journey.
Best wishes
Mathew Bose (Actor)
Encephalitis is an often life-threatening illness caused by infection, usually viral, or by autoimmune diseases affecting
the brain. It can occur at any age but is considered fairly uncommon.
Subsequently many people are left with an acquired brain injury, the degree and severity of which will vary.
The Encephalitis Society is a national charity and the only organisation of its kind in the world dedicated to supporting
people affected by encephalitis and the professionals who support them.
This book provides a comprehensive guide to the illness. It covers the illness, the possible consequences of the
illness, the specialisms and services that can help, accessing benefits, returning to work and acknowledges the needs
of the whole family.
Recovery following the illness is very varied. In some instances where people are affected
by encephalitis the long-term prognosis can be very good, with many people coming
through the illness with little or no difficulties. However, because there are occasions
“Encephalitis can occur at
where more severe problems can occur, the information with regard to outcomes
provided in this book is as broad and far-reaching as possible. The complications
any age but is considered
of encephalitis described in this book do not reflect every individual’s experience
fairly uncommon”
of the illness and some of the information may not be relevant to your individual
Taking into account the emotional strain that a diagnosis of encephalitis may bring, coupled with the amount of
information contained in this book, please use the Society’s support service to talk through any individual concerns:
Telephone 01653 699599
or email: [email protected]
Encephalitis - A Guide
Section 1 - Encephalitis the Illness
Section 4 - Returning to Normal Life
Page No.   
What is Encephalitis
Diagnosis and Treatment
Causes of Encephalitis
Descriptions of Encephalitis
At the Bedside
Discharge from Hospital
Section 2 - The Effects of Encephalitis
The Effects of Encephalitis on the Brain
Guidelines for Recovery
Caring for your brain
The impact of Encephalitis
Cognitive Changes
Physical Changes
Other problems
Section 3  - Specialists and Services
Page No.
Medical Personnel
Rehabilitation Services
Social Services
Meeting with Professionals
Encephalitis - A Guide
Family Issues
Money and Benefits
Returning to Work
Holidays and Travel
Section 5 - Further Reading
53 54
58 59
Fact Sheets
Publications Obtainable from the Encephalitis Society
Other Publications
Information Booklets
Other Organisations
Brain Injury Organisations
Holidays and Leisure
Equipment and Adaptations
Legal Advice
Section 6 - Appendix 1
Pathways through a medico-legal investigation
Encephalitis the Illness
What is Encephalitis?
Encephalitis is inflammation of the brain. The inflammation is caused either by an infection invading the brain
(infectious); or through the immune system attacking the brain in error (post-infectious / autoimmune encephalitis).
Encephalitis is different from meningitis. Meningitis means inflammation of the protective layers that cover the
brain. Sometimes patients have both meningitis and encephalitis and this is called meningoencephalitis.
The types of symptoms seen in encephalitis may reflect the specific areas of the brain affected by inflammation.
This range of possible symptoms and their rate of development vary widely and this can make the diagnosis of
encephalitis difficult.
Encephalitis frequently begins with a ‘flu-like illness or headache. Typically more serious symptoms follow hours to
days later. The most serious finding is an alteration in level of consciousness. This can range from mild confusion or
drowsiness, to loss of consciousness and coma.
Other symptoms include a high temperature, seizures (fits), aversion to bright lights,
inability to speak or control movement, sensory changes, neck stiffness, or
uncharacteristic behaviour.
Some people may also experience hallucinations and vivid nightmares during
the acute period of the encephalitis. These can be very distressing for the
person concerned and the family who may witness their fear and terror. This
phase usually ceases as the inflammation and swelling of the brain subsides.
Encephalitis - A Guide
“Encephalitis is
inflammation of
the brain”
Encephalitis the Illness
Page 1
Encephalitis the Illness
Diagnosis and Treatment
It is very important to differentiate encephalitis from other disorders that may cause similar neurological symptoms and
which may have very different treatments. Disorders that mimic those of encephalitis include bacterial meningitis,
stroke, brain tumours, drug reactions and metabolic disturbances. Symptoms alone often do not allow a doctor to
distinguish between the many diseases that can mimic encephalitis and therefore a variety of hospital tests are
Tests which can help confirm the diagnosis and rule out other disorders include:
Brain Scans Computerized Tomography (CT) or Magnetic Resonance Imaging (MRI) scans may show the extent
of the inflammation in the brain and help differentiate encephalitis from other conditions. Brain scans can exclude
stroke, brain tumours and aneurysms. In the early stages brain scans may show nothing abnormal with significant
inflammatory changes only occurring later in the illness.
Electroencephalogram (EEG), which records brain waves, can detect abnormal patterns of activity. Abnormal
patterns found in encephalitis include slowing of brain activity as well as epileptic seizures.
Lumbar puncture (LP) allows a doctor to sample the cerebrospinal fluid (CSF), that surrounds the brain and spinal
cord. CSF is produced within the brain and flows out at the base of the brain to surround and cushion the brain
and spinal cord. It contains substances essential for normal activity of the brain but also takes waste products back
to blood.
A lumbar puncture involves passing a needle, under local anaesthetic, between two of the back bones at the base
of the spine. In an adult, several tablespoons full of fluid can be collected safely. Usually blood tests are taken at
the same time as the LP in order to compare blood contents with that in CSF.
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Encephalitis - A Guide
Encephalitis the Illness
Encephalitis the Illness
Diagnosis and Treatment
Approximately 10% of adult patients suffer a mild headache after a LP. This headache is typically worse upon being
upright and better lying flat. It usually improves with simple pain killers and good hydration.
A variety of laboratory tests are performed on CSF. Some tests give results within hours whereas others often take
Immediate tests performed on CSF include analysis under the microscope to assess the number and type of white
blood cells present. A raised number of white blood cells in CSF are indicative of inflammation within the brain, spinal
cord, or lining of the brain (meninges). The types of white blood cell found help differentiate between viral or bacterial
More complicated tests on CSF include culture for bacteria, antibody studies, or molecular tests to detect the genetic
footprint of viruses or bacteria. The latter molecular tests include the polymerase chain reaction (PCR), which when
applied to CSF is used most frequently to identify genetic material from herpes simplex virus, varicella zoster virus
(chickenpox virus), and enteroviruses. PCR has significantly advanced the ability to diagnose viral encephalitis.
LP may have to be repeated during an individual’s illness.
Laboratory screening of blood, urine, as well as other body fluids can help detect and identify brain and/or spinal cord
infection. Results from these tests can help exclude other diseases that mimic encephalitis.
The cause of the infection cannot always be determined. Research suggests that despite extensive testing, the
infectious causes of encephalitis cannot be determined in approximately 60% of cases.
Encephalitis - A Guide
Encephalitis the Illness
Page 3
Encephalitis the Illness
Diagnosis and Treatment
For some individuals, their diagnosis of encephalitis will be diagnosis of “exclusion” based upon other diseases
having been dismissed on the basis of laboratory tests. In most cases the type, either infectious or autoimmune/
post-infectious will have been determined.
Some people may have a descriptive diagnosis based on:
The cause of the infection – if known. Examples include herpes simplex virus, West Nile virus, enterovirus, or
Japanese encephalitis virus.
The area of the brain affected. Examples include brain-stem encephalitis or limbic encephalitis.
The type of inflammation, when not caused directly by an infection. Examples include Rasmussen’s
encephalitis Hashimoto’s encephalitis, or Acute Disseminated Encephalomyelitis.
Additional information about types of encephalitis can be found on the Encephalitis Society web site, or requested in print form.
If a doctor suspects a diagnosis of encephalitis , they are legally obliged to report this to the local Health Protection
Unit of the Health Protection Agency (details can be found through
“Additional information about
types of encephalitis can be
found on the Encephalitis
Society web site”
Page 4
Encephalitis - A Guide
Encephalitis the Illness
Encephalitis the Illness
Causes of Encephalitis
Infectious Encephalitis
Viruses are the commonest infections that cause infectious encephalitis. Many of these viruses cause minor infections
elsewhere in the body, such as tummy upsets, skin rashes and cold sores. Only very rarely do the same infections
affect the brain, therefore encephalitis is often described as a rare complication of common infections. The introduction
of vaccination for measles, mumps and rubella has greatly lowered the rate of encephalitis from these diseases. Within
the British Isles, Herpes Simplex Virus (HSV or the cold sore virus) is the virus most frequently identified. Worldwide
other viruses are found, many of which can be caught by mosquito or tick bite.
More rarely bacteria, fungus and parasites can cause encephalitis.
Post-infectious Encephalitis / Autoimmune Encephalitis
Although viruses infecting the brain are a major cause of encephalitis, the body’s reaction to a virus itself can lead to
encephalitis. This occurs when the immune system tries to fight off the virus, and by mistake attacks the brain at the
same time. This condition is called Post-infectious Encephalitis.
Post-infectious encephalitis has a variety of other names which include Acute Disseminated Encephalomyelitis
(ADEM), parainfectious encephalitis, and post-vaccinal encephalitis. It probably accounts for one third of all known
cases of encephalitis. The illness usually follows in the wake of a mild viral infection (such as those that cause rashes
in childhood) or immunisations. Typically there is a delay of days, from two days to three weeks between the triggering
infection and development of the encephalitis.
Encephalitis - A Guide
Encephalitis the Illness
Page 5
Encephalitis the Illness
Causes of Encephalitis
Other Autoimmune causes
It has recently been recognised that there are other forms of encephalitis that result from attack of the brain by the body’s
immune system. Some of these types of autoimmune encephalitis are identified by finding a specific antibody in blood.
The trigger in these cases is not known.
Known viral causes of encephalitis:
Human herpesviruses (e.g. cold sores, glandular fever)
Rash-causing viruses (e.g. mumps, measles, rubella)
Throat & chest viruses (e.g. ‘flu, enteroviruses)
Gut viruses (e.g. enteroviruses, Echo virus)
Insect-borne (e.g.Japanese Encephalitis virus, West Nile virus)
Tick-borne (e.g. Central European Tick-borne virus)
Other causes of encephalitis:
Bacteria (e.g. mycoplasma, meningococcal, pneumococcal and listeria)
Fungi (e.g. histoplasma, cryptococcus, candida)
Parasites (e.g. malaria, toxoplasma)
Drug reactions
Post-infectious Encephalitis
Autoimmune Encephalitis
The above examples are not an exhaustive list.
Page 6
Encephalitis - A Guide
Encephalitis the Illness
Encephalitis the Illness
Descriptions of Encephalitis
Main types
Infectious encephalitis (Acute Viral Encephalitis)
Post-infectious encephalitis (Acute Disseminated Encephalomyelitis)
Other autoimmune encephalopathy
Types of Infectious encephalitis Herpes Simplex encephalitis (HSE) West Nile encephalitis
Japanese encephalitis (JE)
Tick-borne encephalitis (TBE)
Mycoplasma encephalitis
California encephalitis
St Louis encephalitis
Western equine encephalitis
Eastern equine encephalitis
Colorado tick fever
Types of Post-infectious encephalitis Acute disseminated encephalomyelitis (ADEM) Encephalitis lethargica (EL)
Chronic types of Infectious encephalitis
Subacute sclerosing panencephalitis (SSPE)
Progressive rubella panencephalitis
Other autoimmune encephalopathy
Hashimoto’s encephalitis
Paraneoplastic limbic encephalitis
Voltage Gated Potassium Channel Antibody Limbic
Encephalitis (VGKC-LE)
Rasmussen’s encephalitis
Types of encephalitis by area affected
Brain-stem encephalitis
Limbic encephalitis
Encephalitis - A Guide
Encephalitis the Illness
Page 7
Encephalitis the Illness
Treatment of patients with encephalitis has two objectives.
To ensure the patient receives specific treatment for the cause of their encephalitis. It is important that
these drugs are started promptly and often before a definite cause is found. Therefore patients are
frequently given several different drugs at once.
Where the encephalitis is thought to be caused by viral infection, patients are treated with anti-viral drugs.
Acyclovir is the most frequently used anti-viral drug. It is effective against herpes simplex and varicella zoster
viruses and is given at high dose into a vein. Unfortunately there are no specific treatments at present for
many other viral causes of encephalitis. Treatment for mild cases mainly consists of rest and a healthy diet,
including plenty of liquids, to let the immune system fight the virus.
For bacterial causes of encephalitis there is a range of specific treatment available. Patients are usually
started on a type of antibiotic which treats a broad spectrum of different bacterial causes, and then given
more specific types of antibiotic if the specific bacteria causing the illness can be found and identified.
As autoimmune and post-infectious encephalitis is due to the immune system attacking the brain, treatment
involves suppressing the immune system, and may include steroids, intravenous immunoglobulin (IVIg), and
plasma exchange.
To manage the complications arising from the encephalitis and to support the individual whilst they are not
able to perform usual bodily functions.
Often this treatment coupled with close observation necessitates the patient being on an intensive care or
high dependency unit. Interventions vary from controlling seizures, sedation, supplying fluids, treating hospital
- acquired infections, to ventilation.
Page 8
Encephalitis - A Guide
Encephalitis the Illness
Encephalitis the Illness
At the Bedside
Nursing staff will undertake careful and repeated observation, which will include temperature, pulse, respiration,
bloods, input and output of any fluids and checking the functioning of equipment. This will occur on admission and
also regularly throughout the patients stay. The patient may also need a catheter inserting in place of using the toilet
when they are very poorly. If they are at risk of choking a tube may be inserted into the nose (Nasogastric tube) in
order to provide essential nutrients and fluids. If long term artificial feeding is required, the patient may require the
insertion of a PEG tube into their stomach ensuring that sufficient levels of nutrition and fluid are received. They will
probably also have an intravenous line inserted into a vein enabling essential drugs to be administered as and when
Because Encephalitis may make a person very ill, this may cause immobility and as
such they may be at risk of a Deep Vein Thrombosis (DVT). The nursing staff may
suggest that the patient wears anti-embolism stockings to reduce this risk.
The Glasgow Coma Scale (GCS) is used to assess levels of consciousness, eye
opening and motor response and any deterioration in their score is be immediately
reported by the nursing staff to a doctor or consultant.
“Agitated and aggressive
behaviour is not uncommon
during the acute phase of
Encephalitis and after. ”
Agitated and aggressive behaviour is not uncommon during the acute phase of
Encephalitis and after. This may occur because the patient is neurologically agitated
due to the swelling and inflammation in the brain. As the patient begins to recover,
they may enter a phase called post-traumatic amnesia (PTA) and behave extremely out of character, becoming
aggressive, uncooperative or violent. The family must realise that this is not within their loved one’s control, they
are not conscious or aware of their behaviour or the impact it is having on those around them. The image of a
patient who experiences injury to the brain and perhaps coma, who are calm and waking serenely to the delight
of their family is a myth perpetuated by television and other media. A loved one is more likely to be confused,
disoriented, aggressive, and rude. It has not been unknown for patients to abscond from their bed
during these stages of agitation.
Encephalitis - A Guide
Encephalitis the Illness
Page 9
Encephalitis the Illness
At the Bedside
These experiences are distressing for all and can present a number of management problems for those trying to
care for them. If you feel your loved one is at risk, discuss your concerns with the nursing staff – they may be
able to reassure you and show you strategies or interventions they have in place to prevent this from occurring.
Sometimes nursing staff use bedrails to prevent injury, especially where the patient is having or at risk of having
seizures. However if they are very agitated it may be necessary to nurse them on a specially adapted bed that
lowers to the floor, preventing any secondary injuries that may be caused by falling.
If you want to understand further about any interventions used to restrain your loved one in hospital, the National
Patient Safety Agency is a useful source of guidance and information: If you have any concerns
about the care of your loved one please contact your hospital PALS service (see page 15).
Page 10
Encephalitis - A Guide
Encephalitis the Illness
Encephalitis the Illness
Compared to other infectious diseases, encephalitis has a high mortality rate. Overall, approximately 10% of those
with encephalitis die from the brain inflammation or complications such as secondary infection. Some forms of
encephalitis have more severe courses, including herpes simplex virus encephalitis, in which mortality is up to 30%
with treatment, and 70-80% without.
It is hard to comprehend in this era of modern medicine that an infection can result in death. When death occurs it
is usually a result of the brain swelling because of the inflammation. The brain is encased in a hard shell (the skull)
and when it swells it pushes downwards onto the brain-stem. This part of the brain controls the vital functions of
breathing and control of the heart. When it is subjected to severe pressure it can cease to function.
The suddenness with which encephalitis can develop can be traumatic and overwhelming. The inability of 21st
Century drugs and medical procedures to successfully treat the disease can be frightening. Families are often left
feeling stunned and traumatised.
Death is always difficult for those who are left behind, but never more so than when it is totally unexpected. There
are a number of sources of help for families in grief; some of these are listed in the Resource section of this book.
We have specific staff at the Encephalitis Society who can talk through any issues the family and friends may have,
and, if appropriate put bereaved families in touch with each other.
Encephalitis - A Guide
Encephalitis the Illness
Page 11
Encephalitis the Illness
Discharge from Hospital
Planning for discharge should start from the moment of admission to hospital, and ideally, be managed by a named
or key nurse. When it is time for discharge, government guidelines suggest a inter-disciplinary discharge planning
meeting should be offered to make sure that proper plans, support and care can be provided to meet an individuals
needs at home. The person affected and their key family members should be present. A list of Discharge standards
taken from the Dept. of Health website are listed on page 14.
At first sight any difficulties may not appear to be significant, therefore it may simply be assumed that a return to
normal life will not be problematic. However, as some cognitive deficits are subtle, their effect on any functioning
within the home and work place may not initially be evident or may be underestimated.
If there are likely to be continuing health and social care needs, a care plan should be produced. This will identify
who will provide the care and support at home. The person who will be the main carer should be happy with the
plans that are put in place, and if they are not, they need to say so and explain why. Everyone should be convinced
that all placements and plans are in place before a return home and access any community services is begun
– such as Care assistance, Respite facilities, Day Care, Speech and Language Therapy, Occupational Therapy,
“If there are likely to be continuing
health and social care needs, a care
plan should be produced”
Page 12
Encephalitis - A Guide
Encephalitis the Illness
Encephalitis the Illness
Discharge from Hospital
The person’s GP should be advised of their discharge from hospital by letter, which may be sent directly or given to the
person to hand over. It usually gives information about hospital treatment, medication to be given at home, and any
follow-up arrangements. A typed discharge summary will usually be provided to the GP and should be received within
10 days of discharge.
In a few cases, return home will not be possible and the facilities of a comprehensive residential rehabilitation
programme may be required. The majority of people will be managed in local units although it may be appropriate for
the person affected to be referred to a specialist centre for assessment and care planning, even if the implementation of
the care plan is to be followed up by local professionals. Some people will need to be transferred to a specialist centre,
with full neuroscience facilities and an interdisciplinary team with specialist skills in brain injury rehabilitation. Some
centers have an outreach service available to staff from local rehabilitation units providing support to therapists asked
to work with people affected by encephalitis who may have relatively little experience of encephalitis and its after effects.
This list is taken from a Dept of Health document “Discharge from hospital: pathway, process and practice”.
Encephalitis - A Guide
Encephalitis the Illness
Page 13
Encephalitis the Illness
Discharge from Hospital
Patient’s and Carer’s Discharge Standards
Patients being discharged from hospital have the right:
Page 14
1. To full information on their diagnosis and the assessment of their health and social needs in preparation for
2. To be fully involved in planning their own discharge, together with a relative, carer or friend as appropriate.
3. For the discharge plan to start on or before admission where possible.
4. To full information on the services available in the community relevant to their care.
5. To full information on short-or long-term nursing or residential care, including financial implications.
6. To be given an appropriate contact number where they can get help or advice on discharge.
7. To be given a clear, legible discharge letter detailing the support services provided for them (where appropriate).
8. To full information on health authority eligibility criteria for continuing care.
9. The discharge planning team to be available as a point of contact to offer support and advice to patients,
carers, statutory and voluntary agencies.
10. 11. Information on advocacy support.
To have access to the trust complaints procedure and any complaint regarding their discharge
arrangements investigated and a full explanation given.
12. If still not satisfied, then be given access to the health service commissioner.
Encephalitis - A Guide
Encephalitis the Illness
Encephalitis the Illness
Discharge from Hospital
Problems During your stay in hospital?
Patient Advice and Liaison Services (PALS):
PALS act on behalf of NHS users and handle patient and family concerns. They liaise with staff, managers and,
where appropriate, other relevant organisations, to negotiate speedy solutions and to help bring about changes to
the way that services are delivered.
PALS provide:
confidential advice and support to patients, families and their carers
information on the NHS and health related matters
confidential assistance in resolving problems and concerns quickly
information on and explanations of NHS complaints procedures and how to get in touch with someone
who can help.
an early warning system for NHS Trusts, Primary Care Trusts and Patient and Public Involvement Forums by
monitoring trends and gaps in services and reporting these to the trust management for action.
If PALS are unable to resolve your concerns or you have concerns of a more serious nature then please see the
Appendix at the end of this Guide on Medico-legal investigations which also has a section on the NHS Complaints
Another good source of information for Patients who wish to complain is:
The Patient’s Association: Telephone: 0845 6084455 or visit:
If you require the services of a solicitor experienced in dealing with cases of Encephalitis, the Encephalitis Society
can provide the name of a solicitor who may be able to help you
Encephalitis - A Guide
Encephalitis the Illness
Page 15
The Effects of Encephalitis
The Effects of Encephalitis on the Brain
In order to understand the effects of encephalitis on the brain, it can be helpful to understand how the brain works.
The brain is an amazing organ, it controls everything you think, feel and do. All the various parts that make up the
brain work together to help people communicate move and behave.
The brain is made up of approximately 100 billion nerve cells or “neurons” and each neuron makes between 1,000
and 10,000 connections to other neurones. This “neural network” is similar to the way roads connect to make road
At birth all the neurons you will ever have are present but there are very few connections. During early development,
the neurons form trillions of connections. These connections are fine-tuned by the neurons’ electrical activity: useful
connections are maintained or added, while others often disappear. Axons that become regularly used are gradually
covered by a protective coating, the myelin sheath. (A good analogy is the covering a main road with tarmac allowing
traffic to flow more freely).
Cell Body
Myelin sheath
Copyright National
Multiple Sclerosis
Encephalitis - A Guide
The Effects of Encephalitis
Page 16
The Effects of Encephalitis
The Effects of Encephalitis on the Brain
The complexity of the brain is due in part to the intricate system of interconnections between neurons in the different
parts of the brain. Neurons communicate with one another via specialised chemicals called neurotransmitters, of
which there are several.
The brain is composed of numerous structures, each composed of nerve cells (neurons) and supporting cells called
glia. Neurons transmit electrical and chemical signals, and this transmission of signals between neurons is how the
brain functions.
Three basic types of glia exist in the brain:
Oligodendroglia cells wrap axons with myelin. The myelin thus forms a sheath around the axon, facilitating
the transmission of electrical signals along a neurone.
Astroglia cells (astrocytes) are found throughout the brain and play many different “housekeeping” roles,
providing nourishment and protection for the neurons, structural support, or “scaffolding,” for the brain, and
also playing an important role in the immune system of the brain.
Microglial cells are important in the brain’s injury response as they scavenge cellular debris and help to
clean up damage.
The brain is protected by a blood-brain barrier which prevents any large molecules passing from the blood into the
brain. The barrier is the result of the cells lining blood vessels in the brain. Blood vessels in the rest of the body are
lined by cells which fit together very loosely allowing easy
movement by quite large bodies to and from the blood.
Cells lining blood vessels in the brain fit together
very tightly and most substances have to be actively
transported through the cells rather than passing
between them.
Page 17
Encephalitis - A Guide
“The blood-brain barrier acts very
effectively to protect the brain from
many common infections.”
The Effects of Encephalitis
The Effects of Encephalitis
The Effects of Encephalitis on the Brain
The blood-brain barrier acts very effectively to protect the brain from many common infections. Thus, infections
of the brain are very rare. The outcome of any virus infection is dependent upon the ability of the virus to cause
disease and the response of the immune system. When the immune response is either inadequate or inappropriate,
an infection of the brain can cause severe encephalitis.
The immune response evolved to protect organisms against injury and infection. Following an injury or infection
a complex cascade of events leads to the delivery of white blood cells to sites of injury to kill potential pathogens
and promote tissue repair. However, the powerful inflammatory response also has the capacity to cause damage to
normal tissue. Unfortunately the immune response to an infection of the brain can contribute more to the disease
process than the infection itself.
In infectious encephalitis, viruses entering neurons utilise components of the cell in order to replicate (make copies
of themselves). This uses up energy stores and oxygen and damages the cell. In post-infectious / autoimmune
encephalitis the immune system makes antibodies that cause damage to neurons or other brain cells. In both types
of encephalitis, by-products of the immune system’s actions (fluid, white blood cells, the contents of dead nerve
cells and disabled viruses) can significantly alter the fluid surrounding neurons and affect their functioning. For
instance, the characteristics of the cell membrane may be altered, disturbing the electrical properties of the neuron.
Swelling resulting from additional fluid entering the brain can interfere with blood supply causing anoxic (lack of
oxygen) damage.
The extra unwanted fluids build up rapidly, and glial cells try to absorb the unwanted chemicals and fluids in order to
protect neurons from harm, and in the process they swell up too. Glial cells act as sponges and scavengers of toxic
by-products, caused by the inflammation but when they become overloaded, they die and then re-release the toxic
chemicals back into the fluid, where they kill additional neurons. The extremely high levels of these substances
are sufficient to kill vulnerable and weakened neurons by damaging their membranes or by exciting them to a point
where they “burn out” and die.
Encephalitis - A Guide
The Effects of Encephalitis
Page 18
The Effects of Encephalitis
The Effects of Encephalitis on the Brain
At the site of inflammation and in nearby tissue, there is biological chaos, as the brain tries to adjust and fight the
consequences of the damage. The dying cells give off chemicals that activate macrophages (white blood cells), which
move from the bloodstream into the injury area, to absorb and eliminate debris. Glial cells and their helpers, which
have gathered at the site to clean it up, now begin to form the scar tissue that will remain a part of the brain’s new
architecture. Sometimes, the glial barriers prevent healthy, remaining neurons from restoring axonal connections. In
other cases, nerve terminals cannot pass the scar, and abnormal activity is then generated that can lead to epileptic
Page 19
Encephalitis - A Guide
The Effects of Encephalitis
The Effects of Encephalitis
The acute phase of the illness (the time of active brain inflammation) can last anything from a few days to two or three
weeks. In some cases the person may be in a coma for a much longer period. The acute stage may be followed by a
phase of fairly rapid improvement which slows down but recovery can continue over the years to come. No two cases
of encephalitis will have an identical outcome.
Outcomes vary between those who are able to return to their former work and lifestyle (with perhaps only a slight
change in their abilities) to those left profoundly disabled, physically, cognitively or both. A small percentage of those
affected by encephalitis will need to remain in residential care for the rest of their lives.
Nerve cells may be damaged or destroyed by both the infection and inflammation. The resulting damage is termed an
acquired brain injury (ABI). The loss of brain function from ABI can range from very minor impairment, such as some
loss in speed of thinking, to more significant impairments. The degree and type of damage will vary according to the
cause, the severity of the inflammation, the parts of the brain affected, and any delay in treatment. It is this combination
which will determine the pattern of difficulties that remain after the illness. Significant changes may occur in personality
and in the ability to function day to day even if there is a complete physical recovery. Coming to terms with these
problems can be very distressing and challenging for everyone concerned. The person you knew, or who was you,
may have changed and the person they have become, or you have become, may present with a number of problems.
“No two cases of
encephalitis will have
an identical outcome.”
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The Effects of Encephalitis
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The Effects of Encephalitis
During the early days, weeks or months after encephalitis, the main aim is to provide a safe environment and gentle
stimulation to encourage the process of spontaneous recovery. In the later stages, when spontaneous recovery
slows or stops, the main aims are to help the individual affected by encephalitis develop new skills, habits and
strategies for coping with any remaining difficulties.
It is important not to underestimate the time that the person and the whole family will need to adjust, in both
practical and emotional terms, to their new situation. Those involved have, in effect, suffered a complicated form
of bereavement; it is not unrealistic, therefore, to think of allowing several months and sometimes years to come
to terms with what has happened. The kind of knowledge needed in order to come to terms and cope with these
problems does not reside in the pages of a medical textbook nor with medical expert - it comes from knowing
what it is really like to have had encephalitis.
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Guidelines for Recovery
Many of the symptoms in the acute stage of the illness are due to inflammation. Once this inflammation settles
these symptoms begin to resolve and normal consciousness and movement is regained. Friends and family will
have feelings of relief and joy that their loved one has survived. However, the person who has been affected may
remember nothing of the illness; may not in fact even feel ill and may be confused, even angry at finding themselves
in hospital. This can be a testing time for all.
Rest is vital following encephalitis. Hospital visits by family and friends should be kept short, and visitors should
avoid taxing the affected person with too much information. Typically individuals recovering from the acute stage
of the illness can become easily upset and have difficulty controlling their emotions. Friends, family and hospital
staff need to be aware of this and avoid causing undue stress.
People who have been ill with encephalitis often have memory problems. Research has shown that it essential
to give such people information and not ask them to make guesses. That is, say “This is Uncle Tom” not “Who is
Initial recovery may be rapid but usually falls short of being complete. Further recovery takes place more slowly
over a period of months, even years. A long period of convalescence aids recovery, as does a structured timetable
of graded activity and rest. Initially rest periods should be long and activity periods short. Rest is ideally lying down
in a quiet dark room – but sitting quietly with eyes shut can also be beneficial. Becoming overtired and/or stressed
may slow down recovery and may cause an apparent return of symptoms. These symptoms will resolve after a
period of rest.
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Caring for your Brain
Your brain is the control centre for all your body’s functions such as walking, talking, breathing, smell and heart-rate.
It also controls all of your “thinking” functions, your emotions, how you behave and all of your intellectual (cognitive)
activities such as how you attend to things, how you perceive and understand your world and its physical surroundings,
how you learn and remember. It follows therefore, that any trauma to your brain can impair some or all of these functions
or activities, either temporarily or in some cases permanently. However your brain is not fixed, it can reorganise itself
by forming new neural connections throughout life. Brain cells learn by literally making new connections with one
As time passes and you feel better, people, even doctors, will tell you that you
are fine, “it’s time to get on with life.” That sounds good but before you go
rushing back out into that big wide world, listen to your brain, really listen. You
will want to believe that your brain is going to be the same. The problem is that
many people get impatient and try to rush the healing process. Restoring the
networks by which the brain functions takes time. New routes are constantly
being tried but some end up as dead ends. Newly established networks
needs constant maintenance, and research has shown that these repair
phases occur in sleep. They may also be slower and less efficient at relaying
“So go s-l-o-w-l-y
when you start trying
to resume your life”
So go s-l-o-w-l-y when you start trying to resume your life. You do not know how much, or how quickly, your brain
will recover. A brain that is struggling to cope will let you know by giving you a headache, making you unusually
irritable, or confused, or disoriented, or afraid. Be prepared for a long period of convalescence. Initial recovery may
be rapid but usually falls short of complete. Further recovery takes place more slowly over a period of months even
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The Effects of Encephalitis
Caring for your Brain
Repairing nerves and maintaining them in the best possible condition therefore requires rest, essential nutrients,
hydration, gentle exercise and a healthy lifestyle. Fatigue is normal following the illness and is the brain’s way of
“shutting down” in order to carry out repairs. It is important to rest before becoming overtired: doing too much on a
“good” day often results in days of extreme fatigue. Action for ME produce a very good booklet explaining “Pacing”
and how to put it into practice. “Pacing for People with ME” is available for free online or at a cost
of £3 for a printed booklet.
Structure your day with rest periods in-between activities. Recovery is aided by a structured timetable of graded
mental activity followed by rest; followed by graded physical activity followed by rest. Initially rest periods should be
long and activity periods short.
As you improve spend longer on your activities and take shorter rests, always remembering to stop before you get
A healthy diet will also aid recovery, one that is high in antioxidants – found in fresh fruit and vegetables, and high in
omega 3’s – found in fish or flaxseed oils. Antioxidants protect nerves from destructive elements. The recommendation to
eat 5 portions of fruit and vegetables each day should be taken seriously. Omega 3 is an essential ingredient of myelin
the covering of nerves in the brain. Covering nerves with myelin can be likened to covering a road with tarmac, traffic
flows much easier and quicker down a tarmac covered road. Omega 3 is found in fatty fish (such as salmon, tuna
and sardines), flax (linseed) oil and can be taken as an oil capsule.
Exercise improves blood flow through the brain, bringing the essential nutrients needed for repair and maintenance.
Exercise may even spur the growth of new brain cells and prolong the life of existing ones. A little fresh air can even
improve mood. Exercise doesn’t have to be time consuming, expensive or excessive: a short walk round the block 3
times a day will give your brain the boost it needs.
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The Impact of Encephalitis
Recovery following encephalitis is very
Many people come through the illness
with little or no difficulties.
Personality Changes
Inappropriate Behaviour
& Poor Social Skills
Physical Difficulties
However because there are occasions
where more severe problems can occur,
the information with regard to the impact
of encephalitis provided in the next few
pages are as broad and far-reaching as
The difficulties stated in the information
are not reflective of every situation where
encephalitis is involved and some of the
information stated may not be relevant
to your situation.
Inability to Understand
& Communicate
Problems with
New Learning
Hormone Problems
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Problems with Pain and
Other Sensations
Cognitive (thinking)
Problems with
Daily Living Skills
The Effects of Encephalitis
The Effects of Encephalitis
Cognitive Changes
Cognition is the conscious process of the mind by which we are aware of thought and perception, including all
aspects of perceiving, thinking and remembering. In general, cognition is knowledge – the way we learn, perceive
and process the world around us.
When thinking of cognitive problems it is useful to remember that no human skills operate in isolation. We depend
on a combination of several skills to carry out individual tasks. For example, if we want to remember what someone
is saying to us we firstly have to attend to what they are saying (concentration), understand what they are saying
(language / information processing) and keep up with the flow of conversation (speed of thought). Responding to
what has been said requires even more skills.
Similarly, a loss of one skill can affect another skill. For example, a memory problem can actually be the result of an
attention problem. For this reason, it is important for the person affected by encephalitis to have a neuropsychological
assessment, which will more precisely identify the areas of difficulty.
Lack of Insight
Individuals affected by encephalitis may have great difficulty seeing and accepting changes in their thinking and
behaviour. The person may deny the effects of the injury and have unreasonable expectations about what they are
able to do. They may be unaware of the effect their words have on others so do not see the need to amend their
behaviour. Lack of insight is sometimes called “denial”, and people who are confronted by their deficits may become
anxious, depressed or angry. Making the person aware of what they can and cannot do may result in a lack of self
esteem and confidence.
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Cognitive Changes
Memory problems
Problems with memory can take many forms. Memories that existed before the illness may be disrupted. This
disruption may be more severe for memories formed nearer the time of the illness. This applies to most kinds of
memories, e.g. faces, events, meanings of less common words. Skills such as typing, swimming, riding a bicycle
are not usually affected unless there is an associated muscular weakness.
The ability to form new memories may be affected, with the person forgetting new information such as faces and
names within minutes. Instructions will be forgotten unless continual reminders are used. Remembering to do things
and forgetting that things have been done (e.g. putting the kettle on, running a bath) may also occur frequently.
Memory problems are for many individuals post-encephalitis, a major problem. At the moment it is not possible to
restore damaged memory systems in the brain. However, there is much that can be done to help individuals to function
more effectively on a day to day basis. Strategies such as the use of diaries, calendars and electronic memory aids
can make a huge difference. Highly recommended is the book “Coping with Memory Problem” by Linda Clare and
Barbara Wilson (copies are available from the Encephalitis Society).
Poor concentration
A very common outcome is a tendency to lose concentration or be distracted easily. This difficulty can manifest itself
in the inability to focus on a task or idea and ignore or filter out distractions, such as someone walking into a room. The
best way to help with such problems is to keep all possible distractions to a minimum. Keep to one task at a time: for
example if the person is making a cup of tea, do not try to have a conversation.
Speed of Information Processing
Individuals affected by encephalitis may have difficulty absorbing new information whether it is presented verbally, visually
or in written form. A reduction in speed of thought may occur resulting in a slowness to answer questions or to perform
tasks. They may have difficulty keeping up in conversation and their capacity to respond quickly in an emergency
may also be lost. The best way to help is talk at a slow steady pace and make sure one piece of information has been
absorbed before giving the next.
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Cognitive Changes
Poor planning and problem solving
Individuals affected by encephalitis may have difficulty solving problems and planning and organising things they
have to do. They may be inflexible in their thinking, becoming fixed on one particular thought and unable to consider
alternatives. The best way to help is to make sure complex tasks are broken down into step-by-step sequences.
Perceptual, Visuo-spatial and construction skills
Perception involves interpreting information that we receive from our senses. Some people may lose the ability to
recognise the taste of food or appreciate the difference between hot and cold. Some people lose the ability to judge
distances and may appear clumsy. Some people may have ‘neglect’ for one side of pictures or body: for example
they may only shave one side of their face.
Lack of initiative
This may be because some tasks seem so difficult that it seems easier to not attempt them. For some people the
ability to plan and set goals may be lost completely, for the short or long term.
Individuals affected by encephalitis may lose the control system that makes them stop and think before jumping in.
They may have difficulty judging situations and behave in an unpredictable way. This can lead to a wide range of
behavioural issues and problems with relationships, finances and sometimes with society more generally.
Irritability and Anger
Many individuals have a reduced ability to tolerate any kind of pressure or noise. They tend to have a low tolerance
for frustration, becoming irritated by trivial things and losing their temper easily. Unpredictable outbursts of uncontrolled
rage can be very frightening to others. These outbursts are usually directed at the family only, which can be particularly
difficult to take. Many demonstrations of aggressive behaviour are because the person affected by encephalitis feels
relaxed and safe within the family and so vents their frustrations on their loved ones. The best way to deal with
outbursts is to walk away from. Help with managing anger should be sought from a psychologist who understands
about brain injury.
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Cognitive Changes
Socially inappropriate behaviour
Individuals may have difficulty judging how to behave in social situations. They may be over familiar with strangers or
they may make inappropriate sexual advances.
This can be incredibly difficult for families or partners to deal with. A lack of awareness and insensitivity can also result
in unsatisfactory sexual relationships.
When talking we need to choose which words to use and put them together. We also need to speak these words at
the correct volume and speed and with the correct tone and inflections. Communicating with others also requires
us take turns in conversations, interpret and respond to social cues, show interest in others, use humour appropriately
and shift between topics of conversation. Individuals affected by encephalitis who have word finding difficulties, impaired
listening skills and memory problems can become isolated as these difficulties impact on their communication skills.
Some people may also have difficulty in understanding multiple meanings in jokes or sarcasm and may have difficulty
identifying individual words or breaking down the structure of sentences to extract their meaning. A Speech and
Language Therapist may be able to assess and help with these problems.
Individuals affected by encephalitis may sometimes appear self-centred, and lack consideration for the feelings and
needs of their family and friends. This lack of warmth and empathy can be very distressing to close family and friends,
leading to resentment among family members and friends and social isolation for those affected.
Emotional lability
Some individuals lose control of their emotions and tend to overreact. They may cry too much or too often. Others
may laugh at inappropriate times or suffer rapid mood changes, crying then laughing a moment later.
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Cognitive Changes
Anxiety is common as people affected by encephalitis find tasks that used to be easy, more difficult. This in turn
reduces self esteem and confidence. Individuals can often be frightened of going out alone and experience panic
attacks. Some may develop obsessive / compulsive behaviour.
Depression is a normal reaction to loss for all of us. The person affected by encephalitis may feel that they have
“lost” the person they were and that life will not be as it was. A distinction needs to made between “normal” sadness
and grief and an inability to express feelings at all. Professional help or counselling may be needed.
Post –traumatic stress
It would not be unusual for a person who has undergone such an ordeal to be left with anxieties and stress.
Sometimes people describe experiencing flashbacks, panic attacks, feelings of paranoia and ongoing ‘night terrors’
or nightmares. You should seek a referral to a neuropsychiatrist via your GP to help you understand, address and
where necessary treat these problems if they outlast the acute stage of encephalitis.
“Depression is a
normal reaction to
loss for all of us.”
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Physical Changes
All bodily movements are controlled by the brain. Encephalitis may cause weakness, lack of control or loss of
movement. The brain controls our ability to co-ordinate movement and balance. Individuals can therefore sometimes
appear to be clumsy or unstable on his or her feet.
Epilepsy and seizures
Epileptic seizures (or fits) may occur during encephalitis, or may develop weeks, months, or even in very rare cases
years afterwards. Encephalitis has the effect of lowering the threshold needed to produce a seizure, making an attack
more likely. The amount by which it will be lowered varies according to the nature and extent of damage to the brain.
The types of seizures may be complex partial (also called focal, affecting one part of the brain only, and therefore
only one part/half of the body), primary generalised (affecting both halves of the brain, and therefore the whole body,
simultaneously) and secondary generalised (when the seizure may start as a partial seizure but then spreads to the rest
of the brain, resulting in a secondary generalised tonic-clonic [“grand mal”] convulsion). Partial seizures may take the
form of altered and confused behaviour with semi-purposeful actions. They may sometimes be difficult to diagnose.
Epilepsy is treated with anticonvulsant drugs, of which there are several. The aim of the drugs is to either prevent the
spread of abnormal activity within the brain or to raise the threshold at which an attack may occur.
Tiredness and Fatigue
Extra rest is needed after encephalitis and as a result sleeping patterns may alter. Some individuals may need to sleep
for up to 14 hours at a stretch whilst others only need or can only sleep for a few hours each night and may cat-nap
throughout the day.
Feeling over-tired can be a long-term problem after encephalitis, but can be eased by not over doing things and pacing
out your life. In a world where everything moves so fast it is often difficult to adjust to the fact that you may now need
to slow down.
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Physical Changes
Headaches and bodily pain
Changes in sensation, headaches and pain in other parts of the body can last for several weeks after the acute
illness, and sometimes may continue for some time after the acute phase. These may be made worse by lack
of rest, having to concentrate hard, and/or bright lights. Dizziness also may occur, especially with sudden or rapid
movement and may be accompanied by feeling nauseous. While stress and tension are usually the main causes, a
doctor should always check persistent headaches or pain and referral to a pain clinic may be necessary where these
problems persist.
Sensory Changes
Vision, hearing, taste, smell, temperature and touch can all be affected by encephalitis. Problems can range from
complete loss of a sense to variations in sensitivity from one day to the next.
One common problem is sight recognition, for example not being able to see an object that you are looking for or not
recognising familiar faces.
Hearing problems can occur for a number of reasons. Tinnitus is experienced as noise, commonly like a buzzing,
hissing or ringing in the ears. Auditory agnosia is impaired recognition of non-verbal sounds and noises, but intact
language function. In some cases the person can be extremely sensitive to certain noises, pitches, or where there is
more than one sound at a time. They may be unable to tolerate many environments we take for granted (for example
shopping malls and pubs).
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Other Problems
These are only the more common issues, but there are many disorders that are less common but no less debilitating.
Chronic neuroendocrine difficulties can occur in both men and women, with weight gain, thyroid disorders, difficulty
controlling emotions, changes in hair and skin texture and perceived body temperature changes.
Other survivors of a brain injury struggle with typographic dislocation, where they cannot remember how to navigate
even well known environments, such as their own home or suburb. This wide range of frequently “invisible” effects is
why an acquired brain injury can be such a crippling yet unrecognised disability.
Additional information on any of the above issues may be sourced from a number of web sites, including our own. A
list of sites and other resources can be found in the Resource Section of this booklet.
Challenging Behaviour
Often individuals who are affected by encephalitis appear to lose their ability to respond to common behavioural
standards. New behaviours may develop, and, consequently, the person’s behaviour is seen to change. Fortunately,
not all behavioural changes will be negative and some may result in improved
relationships. However, there will also be a large number of people whose
“A booklet “Responding to
change of behaviour will challenge the understanding and tolerance of those
around them. Challenging behaviours do not always cause the person affected
Challenging Behaviour” is
distress or concern but they can upset family members. Successful strategies
to deal with challenging behaviours are not necessarily difficult although they
available from the Encephalitis
must be 100% consistent.
A booklet “Responding to Challenging Behaviour” is available from the Encephalitis Society.
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Specialists and Services
Medical Personnel
A neurologist is a hospital doctor who is specially trained to diagnose disorders of the brain, spinal cord and nerves,
and to treat them with medical interventions if appropriate. Everyone who has been ill with encephalitis should
have been seen by a neurologist, however, in practice this is not always the case. Following the illness you only
need regular follow ups by a neurologist if you have medical problems that require medication such as epilepsy and
headaches. However your neurologist can refer you to other more appropriate services.
Specialist neurologists include:
Neuroimmunologists who study the interactions between the immune system and nervous system.
Neuroendocrinologists who study and treat problems that may arise from endocrine (hormonal) dysfunction.
Neurorehabilitation specialists focus on comprehensive evaluation and treatment of neurological disorders.
Neurophysiologists are concerned with the functions of the nervous system and testing the electrical functions of
the brain.
Neuropsychiatrist is a medical doctor who helps people overcome mental health problems that might occur following
a brain injury. Neuropsychiatry concentrates on what happens when things go wrong, on mental illness and mental
distress. A Neuropsychiatrist can prescribe medication and also arrange for other forms of support as needed.
Family Doctor (General Practitioner, GP)
Your Family Doctor can also refer you to professionals and services that you need, including a neurologist.
Neurology and Epilepsy Specialist Nurses
Specialist Nurses provide care, information, advice and support for people who have been diagnosed with specific
conditions. These nurses also offer help, advice and support for relatives, carers and friends. Specialist Nurses are
increasingly part of a hospital or Out-Patient based team.
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Specialists and Services
Physiotherapist (Physio)
Physiotherapists specialise in assessing and treating the disorders of movement and loss of physical skills, which may
occur following encephalitis. For example, problems with balance, walking, controlling movement of the arms & legs
for everyday actions and/or maintaining general fitness. Specialists in treating people who have had a brain injury are
described as Neuro-physiotherapists.
A GP or Consultant is required to make a referral to the local NHS hospital or community Physiotherapy Department.
Physiotherapists in private practice can be found by looking in the Yellow Pages. Try and locate a clinic specialising
in treating neurological conditions or ask if they employ a Neuro-physiotherapist within the practice. The Chartered
Society of Physiotherapy may be able to help locate a local practitioner who treats private patients and is a member of
the Neuro-physiotherapy Association (ACPIN). The address for the Chartered Society of Physiotherapy is 14, Bedford
Row, London WC1R 4ED. Tel 020 7306 6666.
Occupational Therapy (OT)
Occupational Therapists (OTs) enable people to achieve health, well being and life satisfaction through participation
in occupation. Following encephalitis, all activities of daily living can be affected, e.g. personal hygiene (washing and
dressing), eating and drinking, home management, community living and work skills. Enhancing someone’s ability to
participate in everyday activities is the central aim of Occupational Therapy. The therapy is carried out in in-patient and
out-patient settings, working closely with the person and their available support network of family, friends, and paid
carers once they are discharged home.
Referral to the hospital or community OT services can be by your GP or hospital doctor. Alternatively, you can contact
an independent Occupational Therapist for assistance. A directory of OT’s can be found at the specialist section
“occupational therapists in private practice” (OTIP) website – The enquiry line is 0800 389
4873. The cost of treatment may be met by the NHS or by the insurance firm if there is private medical cover. Do
always ensure that funding is in place before committing to any private treatment.
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Specialists and Services
Speech & Language Therapy (SALT)
Speech and Language Therapists who specialise in acquired neurological disorders provide assessment and
treatment for individuals who have difficulties with communication, or eating, drinking and swallowing following a
brain injury.
If you think you need to see a Speech and Language Therapist you can ask your GP or hospital doctor to make a
referral or you can contact your local Speech and Language Therapy Service. Many Speech and Language
Therapists also work privately and you could look for this information on, and click ‘acquired
neurological disorders’.
Clinical Neuropsychology provides the links between neuroscience, health and social sciences for improved
outcomes for survivors of neurological injury or disease. Neuropsychologists are clinical psychologists who have
special training and experience in understanding how a person’s behaviour, intellect, memory and emotions are
related to the status of their brain.
Expertise in Neuropsychology takes many years of special training and experience with a range of patient groups.
It complements clinical psychology, educational psychology and neurology but offers additional and specific
information to understanding and managing a person who has sustained some insult to the brain.
A Neuropsychologist is not a medical doctor and does not prescribe medication. Neuropsychologists undertake
assessments to help the person understand their strengths and problems in things like thinking and remembering, but
also in mood and behaviour. They are involved in providing rehabilitation which enabes people to manage problems
and regain social roles, such as in work or family life, by the development of strategies and compensatory techniques
when functional gain can no longer be made.
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Specialists and Services
At some point after the illness, there should be a referral to a Neuropsychologist for a neuropsychological assessment.
Ideally this should take place at discharge, if not it can be requested at a follow up appointment. People who are many
years post encephalitis can still benefit from a referral to a Neuropsychologist.
Your GP or hospital doctor can refer you to a Neuropsychologist, and in some areas they will be part of interdisciplinary
rehabilitation teams working in the community and/or rehabilitation units. If you are looking for a private practitioner you
can search for appropriately qualified and regulated individuals on the Internet at: selecting the work area ‘Clinical Neuropsychology’.
A fact sheet “Neuropsychological Assessments” can be downloaded from the web site or requested in paper form from
the Encephalitis Society.
Complementary Therapists
Complementary therapies include treatments such as osteopathy, acupuncture, homeopathy, massage, reflexology and
aromatherapy. Some people have found these treatments useful. It can be difficult to find out whether the practitioners
have proper qualifications – often other people who have used their services are the best source of information, although
some GP’s may have a specialist interest in this area. Many of the established forms of complementary treatments have
their own governing body or college, and you are strongly advised to contact them if you are thinking about finding a
well qualified practitioner. Occasionally, some form of complementary treatment may be available under the NHS but
more usually it has to be paid for privately. Some practitioners will offer treatment on a sliding scale of payment. You are
strongly recommended to discuss with your doctor any alternative therapies, medicines or treatments before using them.
Further details of specific complimentary therapies are available from the Encephalitis Society web site and can be
requested by post. Details of the book “Complementary Healthcare: a guide for patients” are in the Resource Section.
The book is produced by the Prince of Wales’s Foundation for Integrated Health: ISBN: 053945383
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Specialists and Services
Rehabilitation Services
The provision of rehabilitation varies widely among different parts of the country. Many people will return straight
home from hospital care after encephalitis. Others, more seriously affected may need to be transferred to a
specialist centre, with full neuroscience facilities and an interdisciplinary team with specialist skills in brain injury
rehabilitation. Some centres have an outreach service available to staff from local rehabilitation units. This team
provides support to therapists asked to work with people affected by encephalitis, who may have relatively little
experience of this illness and its after effects.
There is a directory of some rehabilitation services available on the Internet at
You can also call the Encephalitis Society 01653 699599 if you would like help finding details of local, suitable
Rehabilitation programmes should be based on the findings of various assessments, and are sometimes available
on an outpatient basis. Cognitive rehabilitation programmes are a recent development but are increasingly
becoming available. They are aimed at improving functions such as memory, attention, problem-solving, anger etc
and helping individuals to work round difficulties in these areas. They teach compensatory strategies for tackling
these problems.
The Royal College of Physicians and the British Society of Rehabilitation Medicine have produced national clinical
guidelines for rehabilitation following acquired brain injury. They were published in 2003 and information can be
found at there is also a link from the Encephalitis Society web site.
These guidelines were developed by a multidisciplinary working party and provide a comprehensive framework
for the management of adults with acquired brain injury. They set out the standards required for post-acute
rehabilitation and longer-term care. The guidelines are evidence based, covering not only clinical care but also
service provision, and were produced specifically to inform the National Service Framework on Long-Term
(Neurological) Conditions.
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Rehabilitation Services
The Long-term (Neurological) Conditions National Service Framework (NSF) was launched in March 2005. The NSF aims
to transform the way health and social care services support people to live with long-term neurological conditions. Key
themes are independent living, care planned around the needs and choices of the individual, easier, timely access to
services and joint working across all agencies and disciplines involved.
For further information about the NSF in your local area:
“The NSF aims to transform
the way health and social care
services support people to live
with long-term neurological
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Specialists and Services
Specialists and Services
Social Services
Social Services are part of your local authority or council. The people working for social services are there to give
you advice and support if you are experiencing difficulties. In some local areas there may be a specialist brain injury
social work team. To contact a Social Worker you will need to contact your local Social Services and speak to the
‘Duty Officer’ who can make a referral to the appropriate team. A Social Worker will then be allocated to complete
an assessment of need and a care plan. Social Workers also ensure that individuals and carers are aware of their
welfare rights, and support them dealing with issues affecting their future.
Examples of support offered by Social Services
Practical help at home (shopping, help with personal hygiene)
Someone to be with the person affected when they are on their own for short spells and need supervision
e.g. because of memory problems
Attendance at day centres or longer respite care
Adaptations to the home or special equipment
Family Aid
A Carer’s Assessment - Carers are now legally entitled to an assessment of their own needs. Living with a brain
injured person can be stressful and respite care may be necessary on a regular basis. The term ‘carer’ is used to
distinguish those who provide care for others on an unpaid basis, apart from those who are paid (care workers,
home helps and people employed by someone with a disability).
You should have a written copy of any plans that are made with social services. You may have to pay something
towards the cost of services depending on how much money you have coming in.
Carers UK is the leading provider of information on all matters relating to caring . If you need
advice about your caring situation please call CarersLine on 0808 808 7777.
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Specialists and Services
Meeting with Professionals
Meetings with professionals could be appointments with your GP, a Consultant or therapist at the hospital, a social
worker, someone from the benefits agency or other advice worker. Meeting professionals can be quite daunting
and emotional especially if you are anxious or upset. Good preparation can help to ensure that the experience is a
positive one.
Arranging the meeting:
Ask where you will meet, you may have a choice.
If possible ask what is to be discussed so you can think about it and talk to someone beforehand.
Ask who will be there and think about having someone with you. (A friend/relative or someone from another
Before the meeting:
Think about what you want to say, write down your list of problems and what you want achieve from the
meeting, or your report on how things are or have been since you last saw them.
Look at your diary and any numbering system so you can explain how things have improved or got worse.
At the Meeting:
Keep it simple and keep checking your notes.
Listen to what is said and take notes or ask someone to come with you who can do this. Keep a record of all your meetings.
If you don’t understand, don’t be afraid to say so and ask them to explain.
Don’t see professionals as the enemy – they are just ordinary people who have some extra training.
You might want to ask what alternatives they are prepared to consider; whether you can have a trial period;
or explain that you need time to think about it and talk it through with someone else.
Ask for any decision /information/outcomes from the meeting to be put in writing.
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Meeting with Professionals
If things go wrong:
Don’t get angry – take some deep breaths or ask for a short break.
Don’t blame – focus on finding a solution.
Say you are not comfortable with their decision and ask for a second opinion.
At the end of the meeting:
Check you have covered all your points on your list.
Ask them to repeat what people have agreed to do so everyone is clear.
Ask that another time and venue be arranged if necessary
Try and end the meeting on a friendly note.
A fact sheet “Meeting with Professionals” can be downloaded from the web site or requested in paper form from
the Encephalitis Society.
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Returning to Normal Life
Family Issues
The majority of people who have been ill with encephalitis return to the care of their family. Consequently families
bear the brunt of the emotional and behavioural changes which can follow encephalitis, often without appropriate
information or support. In addition to this Guide, the Encephalitis Society can help with further information, advice
and support. The Society operates a linking scheme, linking people in similar situations for mutual support. The
Society also organises support meetings across the UK and Republic of Ireland which are free to attend and provide
an opportunity to meet with other people and families.
Parents and partners who find themselves having to deal with significant caring issues may
benefit from contacting their local Carers’ Resource. The national organisation Carers UK
is the leading provider of information on all matters relating to caring. CarersLine on 0808 808 7777
The Encephalitis Society does not have a local support network, but there are numerous
HEADWAY groups that can provide this service. Headway is a charity set up to give help
and support to people affected by brain injury. A network of local Headway Groups and
Branches throughout the UK offers a wide range of services, including rehabilitation
programmes, carer support, social re-integration, community outreach and respite care.
The services available will vary, depending on local needs and resources. Helpline 0808 800 2244, [email protected]
“All families are
different and no matter
how well functioning
your family is there will
be major challenges
All families are different and no matter how well functioning your family is there will be major challenges ahead. Initially
there may be elation that a loved one has survived the illness but the person themselves may have no recollection of
the illness. There can be a conflict of feelings with relief and joy on one side and confusion, even anger on the other,
as the person affected finds that they are unable to care for themselves or carry out their roles as they once did.
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Returning to Normal Life
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Returning to Normal Life
Family Issues
When encephalitis affects a family, its coping strategies will be severely tested. Spouses often feel isolated and
trapped as the roles are reversed and relationships put under strain. Children and siblings can also have emotional
problems and their needs overlooked. Extended family and friends often want to help but don’t know how.
Accepting your situation can help, however this is not always easy and may be difficult to achieve. Inevitably not
all families have good relationships and sometimes the sudden impact of encephalitis adds to already strained
relations. Typically families will go through a process of coming to terms with the consequences of the illness then
finding ways of coping. In many cases this looks something like the following 5 steps:
1. Why is s/he ill?
The initial reaction of family and friends is usually a mixture of panic and disbelief as the difficulty in diagnosing
the illness becomes apparent. “Why is s/he so ill, when all the tests are normal?” Some of the initial tests are
to exclude other conditions, when they present as “normal” a diagnosis of encephalitis becomes more probable.
Often encephalitis is diagnosed because all other possible conditions are excluded.
2. S/he’s getting better / What am I doing in hospital?
As symptoms subside family and friends experience relief and elation. This moment can be a source of conflict
between the person affected and friends and family. Family and friends have been through a very traumatic
experience and may have been prepared to lose their loved one who in turn may remember nothing of the illness.
Some individual’s may in fact not even feel ill and be confused, even angry at finding themselves in hospital.
3. S/he looks normal / I feel terrible
A good physical recovery is usual after encephalitis but this outwardly good physical appearance can mislead family
and friends into believing that the person affected has completely recovered. The person themselves, however,
may be struggling with even the simplest tasks.
4. Why can’t s/he pull herself together / I think I’m going mad
It is at this stage that a referral for a neuropsychological assessment is crucial. The assessment will identify affected
brain functions providing an explanation of an individual’s emotions and why some tasks seem no longer possible.
The assessment can form the basis of a programme of helpful coping mechanisms and strategies.
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5. Life is different now / I am different now
At this point there is a realisation and acceptance that some limitations are going to be permanent. There is a
readjustment of expectations, relationships and roles are redefined.
Being supported emotionally is very important to all of us. Having someone who shares our concerns makes it easier
to cope. For some people having a supportive family will be enough. Others may need more professional help.
There are various kinds of counselling services available, their help may be short or longer term and it may be free
or involve payment. Counselling isn’t offered routinely and you will have to ask for it. Often the first person to ask is
your GP. The British Association for Counselling and Psychotherapy provides a list of local member
Managing Stress
Stress can be brought about by the day to day difficulties of coming to terms with the effects of encephalitis.
Experiencing stress for short bursts is a healthy way to respond to difficult situations but excessive or prolonged
stress can cause illness. These may include physical symptoms - headaches, nausea, indigestion, palpitations,
excessive perspiration. Prolonged stress might lead to feelings of anxiety, fear, anger, frustration, and depression.
There may be changes in behaviour too - more irritable or tearful, this can affect interaction with others and it may
interfere with sleep patterns or sex life.
Regular exercise, rest and nutritious food and water are all necessary in order to live well and withstand stress. Learn to
relax by listening to pleasant music or doing specific relaxation exercises that can help you sleep better.
A number of organisations produce a range of helpful information on coping with stress, feelings of anxiety and
depression. They include the Mental Health Foundation and Mind
Details of these organisations can be found in the Resource Section at the back of this guide.
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Returning to Normal Life
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Returning to Normal Life
Money and Benefits
In the days following encephalitis, money can be a concern. If the person who has been ill was employed when they
had encephalitis, their employer should pay them in line with any company sickness package they have or at least
Stautory Sick Pay, which can be paid for the first 28 weeks of an illness.
The effects of encephalitis may have an effect on employment and a family’s finances. Claiming benefits can help to
ease the pressure however the processes are often not easy. It can be a frustrating experience, especially for someone
left with difficulties talking, with memory or with understanding. The system is complex and can be confusing, so it is
important to get professional advice and to apply as soon as possible so that money to which you are entitled is not
People and families on low income may be able to claim Income Support or Tax Credits. The social worker at the
hospital, your local social worker, or the disability benefits advisor at your local Citizen’s Advice Bureau, can all help.
Their details can be found in your local telephone directory or go to
Benefits advice can be obtained from the Benefits Enquiry Line on 0800 882200.
Headway - the brain injury association produce a booklet ‘Welfare Benefits after brain injury’, available from their web
site or from their Helpline 0808 800 2244 .
The Disability Alliance also have some excellent guides to help you claim benefits and fill in the forms correctly. They can
also provide advice and information. Tel: 020 7247 8776 or Email: [email protected]
Direct Payments
Direct Payments are cash payments made in lieu of social service provisions, to individuals who have been assessed
as needing services. They can be made to disabled people aged 16 or over, to people with parental responsibility for
disabled children, and to carers aged 16 or over in respect of carer services.
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Money and Benefits
The aim of a direct payment is to give more flexibility in how services are provided to many individuals who are
assessed eligible for social services support. By giving individuals money in lieu of social care services people
have greater choice and control over their lives, and are able to make their own decisions about how their care is
The National Centre for Independent Living (NCIL) produces “Everything you need to know about getting and using
Direct Payments” and other useful information
“The Disability Alliance have
some excellent guides to help
you claim benefits and fill in the
forms correctly”
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Returning to Normal Life
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Returning to Normal Life
Returning to Work
It is quite natural to want to go back to work as soon as possible. Some people may find they are able to return to
their occupation with little or no adjustment. However, people affected by encephalitis often make the mistake of
thinking that because they are feeling physically able to return to work, they will be able to cope with the wider
demands of the job. Many people expect to be able to work a full day straight away and finding out that this is
not in fact possible for various reasons can be devastating to confidence and self-belief. A return to work too
early in the recovery phase is likely to end in failure. It is not unusual for people following encephalitis not return
to work for 6 months.
“A gradual return to
work is therefore
important, as are easier
working conditions and
easier work tasks.”
A gradual return to work is therefore important, as are easier working conditions
and easier work tasks. This will allow the individual to build up their stamina
and capabilities: a situation that may need to continue for quite an extended
time. Ideally, it should start with just a few hours per day, gradually building
up as stamina and confidence improves. The reality is that a return to work
can be difficult. Re-training may be necessary for the actual job; emotional
support may also be necessary to boost confidence levels during the stress
of adjustment. Some people may need to think seriously about whether they
are fit for work.
The Disability Employment Adviser (DEA) at the local Job Centre is a good place to start when considering a
return to work. DEA’s can discuss the current employment situation and work to plan the best way back into
work. If there is concern about the job the individual is already in because of the effects of encephalitis, the
DEA can provide advice to both them and their employer and explore practical ways to help retain the job.
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Together an Action Plan can be drawn up to help move into or keep an existing job.
DEAs can also offer:
an employment assessment to identify what work or training suits best
referral, if needed, to an Occupational Therapist for an assessment to identify the most appropriate work or
training and when someone should return.
They will be able to suggest other organisations that will be able to help.
support in the form of Access to Work or WORKSTEP, or through another organisation.
If it is not possible to go back to a previous job, there are alternative options such as re-training. Organisations, such
as Rehab UK, can help to find alternative employment and have supportive schemes to help an employer address any
changed needs.
Brain Injury Rehabilitation Centres are beginning to offer return-to-work and outreach programmes, which include
preparatory group training and the presence of a support worker in the work place. Rehab UK specialises in vocational
rehabilitation and they can be contacted for advice: Additional contact details are in the Resource
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Returning to Normal Life
Many people see their return to driving as a measure of their recovery. However, it must be remembered that
driving involves many more complex skills than simply the mechanical ability to drive a vehicle. It requires the
ability to observe, sequence events, make quick judgements, plan ahead and react appropriately to complicated
situations, often in busy traffic. You need to be absolutely sure you can judge speed and distance and that your
perception of situations has not been affected. Concentration difficulties, memory problems, difficulties in learning
and a slowed response to situations are all common after encephalitis and may affect your ability to drive. Emotional
or psychological problems, such as anger, mood swings, anxiety or panic attacks, can also affect a person’s ability to
drive. In some cases more obvious physical or visual impairments may also pose problems for a return to driving.
Roughly a quarter of all people who have had encephalitis will go on to suffer from seizures or epilepsy and this
may pose significant difficulties for individuals who want to return to driving. DVLA has very specific guidelines
regarding driving and epilepsy and these will vary depending on several things such as when you have seizures,
how controlled by medication they are and when you had your last seizure.
The DVLA must in any case be informed if you have had Encephalitis and wish to return to or begin driving. Their
medical team is very sympathetic and they will explain exactly what you need to do if you contact them.
Tel: 0870 600 0301, Monday to Friday, 8.00 am to 5.30 pm and Saturday, 8.00am to 1.00pm
A fact sheet “Driving after Encephalitis” can be downloaded from the web site or requested in paper form from the
Encephalitis Society.
If you are refused a driving licence you may be eligible for a free bus pass. This is valid for local bus travel between
9.30am and 11pm Monday to Fridays and all day at weekends and Bank Holidays. This is a legal minimum
requirement and is funded by the government. Some local authorities will also offer free travel at other times of
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Holidays and Travel Insurance
When, following encephalitis, people have problems with fatigue or need a structured environment in which to
function, the holidays can be a difficult time. In most families, holidays and the holiday season are full of the added
stress of travelling, new places, visiting relatives, additional entertaining, shopping, and extraordinary confusion. For
people with low tolerance to noise and changes in their environment, they can become overloaded, and shut down
cognitively. Therefore, it is wise to consider planning around problem areas for an enjoyable holiday time.
Insurance is an essential investment for anyone planning to travel or go on holiday, covering such things as illness,
accident or loss of luggage. If you book a package or through a travel company, insurance is often included as part
of the price. If you have epilepsy as a consequence of encephalitis, it is worth taking a closer look at the details
of the policy, to see whether pre-existing medical conditions are covered. There are companies that specialise in
providing cover for people that have a history of a pre - existing medical condition/s. What might be required by the
insurer is a letter confirming that the individual is fit to travel.
The British Insurance Brokers Association ( BIBA ) are an independent service
Under the Disability Discrimination Act, holiday insurance companies should not weight a premium simply because
a person has a pre-existing medical condition. Each company should consider the person’s circumstances before
giving a quote. Often this means speaking to someone in the medical department of the company, who will ask
various questions about any pre-existing condition. A premium may then be added, based on the risk of any
condition. It may be worth contacting a few insurance companies to see who can offer the best policy and
The Doctor Babel website enables individuals to create a simple medical record online that can be translated
accurately into many languages and printed
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Returning to Normal Life
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Further Reading
The Resource Section of the web site is kept up to date on the Society Website with publications and links
Fact sheets
The Society is constantly updating its information and produces a range of Fact sheets which are available as pages
on the web site. Print copies can also be requested from the Society.
Publications – Obtainable from the Encephalitis Society
A publications form can be downloaded from the web site or requested by post or telephone.
Encephalitis – an Information DVD - This resource explains in sections what the illness encephalitis is, how it is
diagnosed and treated, how to deal with the problems and difficulties that follow and what the Society does to
support all those affected.
Acquired Brain Injury – The Facts - This 62 page publication, produced by the Brain Injury Association of
Queensland Inc, is highly recommended. It is brimming with information and practical strategies, both for people
who have acquired a brain injury, and their family members and carers. The Encephalitis Society has obtained
copies for distribution in the UK.
Coping with Memory Problems by Linda Clare and Barbara Wilson. A practical guide for people with memory
impairments, their relatives, friends, and carers.
Responding to Challenging Behaviour – following acquired brain injury by the Brain Injury Association of Queensland.
Unfortunately there will be some people whose change in behaviour will challenge the understanding and tolerance
of those around them. This book provides explanations and practical approaches. The Encephalitis Society has a
licence to print and distribute this booklet.
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Publications from the Encephalitis Society
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Further Reading
Encephalitis – a parents handbook. The Handbook explains what encephalitis is and directs parents through the
maze of services, from health, social services and education, which are needed to maximize their child’s recovery.
Parents own emotional needs are also acknowledged and addressed.
Gilley the Giraffe…who changed. The book has been written by a mother for the siblings of her child recovering from
encephalitis. Being the parent of a child recovering from encephalitis can be a bewildering and lonely experience.
Being the young sibling of that child, or indeed the child him or herself can be equally bewildering. “How can he
look the same brother, yet act so differently?” “What has happened to me?” “Why has he started having seizures?”
“When will we be a normal family again?”
Must Try Harder – Booklet and DVD. This resource explains how teaching staff might help pupils with an Acquired
Brain Injury (ABI), so as to meet a child’s educational needs. It examines why educational difficulties can arise and
useful strategies.
Emma’s Story – A Journey through Encephalitis. Ian and Margaret Shaw’s account of their daughter, aged 14, her
illness and recovery. An inspiration to other parents.
Other Publications
Nearly all the books we recommend can be bought via Amazon. If you click on the Amazon link on our website
home page then we will benefit from a percentage donation direct from Amazon!
Books specifically relating to Encephalitis
Narratives (people’s stories):
Out of It by Simon Hattenstone
Healing Lazarus by Lewis Richmond
In the Shadow of Memory by Floyd Skloot
Awakenings by Oliver Sacks
Forever Today by Deborah Wearing
Rachel’s Story by Rita O’Dwyer
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Publications from the Encephalitis Society
Further Reading
Books specifically relating to Acquired Brain Injury
Narratives (people’s stories) on Acquired Brain Injury:
Where is the Mango Princess? By Cathy Crimmins
Over My Head by Claudia L Osborn
Time Out of Mind by Jane Lapotaire
Doing up Buttons by Christine Durham
Practical Resources:
The Brain Injury Workbook by Trevor Powell & Kit Malia
Coping with Memory Problems by Linda Clare & Barbara Wilson
The Memory Booster Workout by Dr Jo Iddon & Dr Huw Williams
The Human Brain: A guided by Susan Greenfield
Carer and Family Guide – Coping with Acquired Brain injury by Headway Ireland
The Selfish Pig’s Guide to Caring by Hugh Marriott
Brain Injury and Returning to Employment by James Japp
Information Booklets:
From the Royal College of Physicians on 020 7935 1174 or email [email protected]
Guidelines for rehabilitation following acquired brain injury (2003)
Vocational assessment and rehabilitation after acquired brain injury (2004)
Concise guidance on treating depression following acquired brain injury in a rehabilitation setting (2005)
From the Neurological Alliance 020 7793 5907 or
In search of a service – The experiences of people with neurological conditions
Levelling Up – Standards of care for people with a neurological condition
Getting the Best from Neurological Services
From the Dept of Health or Tel: 08701 555 455
The National Service Framework for Long Term (Neurological) Conditions
Encephalitis - A Guide
Other Publications
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Further Reading
Other Organisations
Brain Injury Organisations
Brain & Spine Foundation
Develops research, education and information programmes aimed at improving the prevention, treatment and care of
people affected by disorders of the brain and spine. The Brain and Spine Helpline is run by neuroscience healthcare
Helpline 0808 808 1000
The Brain Injury Association of Queensland
The Association coordinates a range of services for people with a brain injury, carers, family members and professionals throughout Queensland. They produce a number of excellent factsheets and booklet.
Encephalitis Ireland
The site provides a forum for information and discussion and posts details of regular meetings in Dublin, Cork and
Epilepsy Action
Epilepsy Action aims to improve the quality of life and promote the interests of people living with epilepsy.
Helpline 0808 800 5050
Headway - the brain injury association
Headway is a charity set up to give help and support to people affected by brain injury.
Helpline 0808 800 2244
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Further Reading
Other Organisations
Headway Ireland
Headway is the Irish National Association for Acquired Brain Injury (ABI).
Tel: (01) 810 2066
National Society for Epilepsy
The National Society for Epilepsy is committed to providing information and support to people with epilepsy, their
families, friends and professionals involved in their care.
Tel: 01494 601300
Brain Injury Rehabilitation Trust
BIRT is Europe’s largest independent provider of brain injury rehabilitation services.
Momentum Scotland
Offer assessment, vocational and educational services.
Rehab UK
Offer assessment, vocational and educational services.
Tel: 020 7378 0505
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Other Organisations
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Further Reading
Other Organisations
Rehabilitation continued...
Rehab Group, Ireland
Tel: 00 353 1205 7200
National Bureau for Students With Disabilities.
Tel: 020 7450 0620
Carers UK
Provides an information and advice service for anyone with a caring role.,
Helpline 0808 808 7777
Crossroads - Caring for Carers
Supports a network of local care attendant schemes,
Tel: 0141 226 3793
British Association for Counselling and Psychotherapy
Provides a list of local member counsellors.
Tel: 0870 443 5252
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Further Reading
Other Organisations
The Compassionate Friends
Supports bereaved families.
Tel: 08451 232304
Cruse Bereavement Care
Provides a free counselling service for bereaved people.,
Tel: 0870 167 1677
Holidays and Leisure
Family Holiday Association
Allocates grants to families for one week’s holiday of their choice. Applications received only from a health visitor
or social worker.
Tel: 020 7436 3304
Listening Books
Provides an audio book library for anyone who has difficulty reading in the usual way due to disability or illness.
Tel: 020 7407 9417
Tourism for All UK
Provides information to people with disabilities and older people in relation to accessible accommodation.
Tel: 0845 124 9971
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Further Reading
Other Organisations
Holidays and Leisure continued...
The Royal Association for Disability and Rehabilitation (RADAR)
Produces a number of travel guides. These list organisations that provide holidays for people with disabilities, including epilepsy. Their publications include ‘Holidays in Britain and Ireland 2002 – a guide for disabled people’.
Tel: 020 7250 3222
Equipment and Adaptations
Disabled Living Centres Council
Gives details of centres across the country where aids and equipment can be seen and tried out.
Tel: 0161 834 1044
Disabled Living Foundation
Provides information about aids and equipment.
Tel: 0845 130 9177
Disability Alliance
Disability Alliance (DA), publishers of the Disability Rights Handbook, is regarded as the leading authority on social
security benefits for disabled people.
Tel: 020 7247 8776
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Further Reading
Other Organisations
Financial continued...
Family Welfare Association
Assists families and individuals to overcome the effects of poverty. Referrals from professionals only.,
Tel: 020 7254 6251
Legal Advice
Disability Law Service
Provides a free law and advisory centre for people with disabilities, their families and carers.
Tel: 020 7791 9800
The Disability Rights Commission (DRC)
An independent body established in April 2000 by Act of Parliament to stop discrimination and promote equality
of opportunity for disabled people.
Tel: 08457 622 633
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Other Organisations
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Further Reading
Other Organisations
Asian people with Disabilities Alliance
APDA, founded in 1988, continues to be successfully managed and run by Asian people with in depth knowledge
and personal experience of disability and caring. It is a non-governmental community organisation.
Tel: 020 8902 2113, 020 89022083
Challenging Behaviour Foundation
The Challenging Behaviour Foundation exists to demonstrate that individuals with severe learning disabilities who
are described as having challenging behaviour can enjoy normal life opportunities when their behaviour is properly
understood and appropriately managed, and to support parents and carers through education and information to
enable this to happen.
Tel: 01634 838739
The Patients Association
Gives advice on problems relating to health and healthcare.
Tel: 0845 6084455
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Further Reading
Glossary (adapted with permission from the Brain and Spine Foundation web site)
Absence seizure
A type of fit seen in epilepsy which is particularly common in children and which takes the form of brief spells of impaired
Acute attack
A sudden flare-up in symptoms.
A substance that destroys or inhibits the growth of bacterial microbes/microorganisms.
A drug that prevents or reduces the severity of fits/seizures.
The immune system recognises and then gets rid of infections using cells called lymphocytes and proteins called
antibodies. Usually the immune system can tell the difference between normal body proteins (“self”) and those of
bacteria or viruses (“foreign”). Occasionally “self” proteins are recognised as “foreign” and inflammation develops.
This is called an autoimmune reaction.
The long cytoplasmic extensions of nerve cells (neurones) that conduct the electrical impulses or messages in both the
central and in the peripheral nervous systems. They can be several feet in length.
Removal of a small piece of living tissue from a part of the body for microscopic examination.
A stalk of nerve cells and fibres that links the lowest part of the brain to the spinal cord.
Basal ganglia
A group of structures and nuclei in the brain which help control movement.
Central nervous system (CNS)
The central nervous system is made up of the brain and spinal cord. The central nervous system works together with the
peripheral nervous system, which consists of all the nerves that carry signals between the CNS and the rest of the body.
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Further Reading
Glossary (adapted with permission from the Brain and Spine Foundation web site)
The part of the brain which controls balance.
Long-term or persisting.
Cerebellar ataxia
The cerebellum is part of the back of the brain. It particularly deals with the co-ordination of actions and balance.
Individuals who have disease of the cerebellum, which is affected in CJD, become clumsy, shaky (tremulous) in their
limbs and develop slurred speech and poor balance. This is termed ‘cerebellar ataxia’.
To do with the brain.
Cerebrospinal Fluid (CSF)
A clear fluid that surrounds the brain and spinal cord in the skull and spinal column. The body continually renews this
fluid by producing and then absorbing it. Among other functions, it helps to support and cushion the brain and spinal
cord. The analysis of CSF can be very helpful when diagnosing various neurological diseases including meningitis and
Exchanges between a doctor and patient - history taking, examination and some aspects of treatment - constitute
clinical activity.
Clinical psychologist
A specialist who uses the science dealing with the brain and mental processes to assess and treat patients.
Clinical neurophysiologist
A doctor specialising in clinical neurophysiology.
Patients are said to be in a coma if they are unable to obey simple commands, do not utter comprehensible words and
do not open their eyes even in response to pain. The level of coma is most frequently assessed by the Glasgow coma
score (3-15) which allows the severity of coma to be quantified and therefore for the effects of treatment to be better
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Glossary (adapted with permission from the Brain and Spine Foundation web site)
CT scan
A computer-aided x-ray used to provide a clear picture of a part of the body, for example the brain, inside of the skull and
the ear.
CT/MRI contrast
A dye injected into the veins to improve MRI and CT scan pictures.
Loss of the protective “insulating” myelin sheath that covers nerve fibres.
Differential diagnosis
The term used by doctors to refer to the various possible causes of a patient’s symptoms.
The EEG (electroencephalogram) is a recording of the natural electrical activity of the brain. It involves placing small recording electrodes on the scalp and is completely painless and harmless. The analysis of the EEG can be very helpful in
diagnosing various neurological diseases including epilepsy and encephalitis.
Inflammation of the brain.
Any disease or disorder affecting the brain resulting in a reduced level of consciousness.
This term is used for a disease that for most of the time is rare in the community, but that suddenly spreads to large
numbers of people.
Disorder of brain function usually characterised by recurrent attacks of unconsciousness (fits or seizures).
Epileptic fit (seizure)
A sudden and short-lived electrical disturbance in the brain which often, but by no means always, causes abnormal
shaking movements and a brief loss of consciousness.
Incapacitating mental or physical tiredness.
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Further Reading
Glossary (adapted with permission from the Brain and Spine Foundation web site)
Generalised convulsion or seizure
This type of seizure, which arises over a wide area of the brain, causes loss of consciousness and affects the whole
This is muscular weakness or partial paralysis on one side of the body.
This is a paralysis or weakness on one side of the body caused by damage to the motor nerve tracts in the opposite side
of the brain.
An abnormal increase in the amount of cerebrospinal fluid within the cavities of the brain.
A process in which part of the body can become hot and swollen, not necessarily directly due to an infection. It is usually a
normal response to injury or invasion by foreign material, and is characterised microscopically by an increase in the number of immune cells such as lymphocytes and macrophages. Inflammation within the enclosed space of the brain and
spinal cord is particularly serious as to leads to acute brain swelling called cerebral oedema which may be fatal.
A health or other professional who is responsible for coordinating the treatment and care of those who are ill.
Level of consciousness
The level of consciousness of a person can vary between being fully conscious and being in a deep coma, and there are
many levels between these two extremes. Medical staff will assess a person’s level of consciousness by checking for
certain responses, which include eye opening, verbal response and response to stimulation.
The name given to the lowest mobile portion of the spine, sometimes referred to as the small of the back.
Lumbar puncture
A medical test, involving taking a small sample of fluid from the lower spine using a needle, a bit like a blood test. This is
usually done with some local anaesthetic when the person is lying on their side on a bed or couch.There are no serious
side effects, although some people may get a headache afterwards.
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Further Reading
Glossary (adapted with permission from the Brain and Spine Foundation web site)
The three connective tissue membranes that line the skull and vertebral canal and enclose the brain and spinal cord.
An inflammation of the membranes covering the brain (the meninges) due to infection.
MRI scan
Magnetic Resonance Imaging is a technique that gives very clear pictures of an area of the body (e.g. the ear) in any
plane. The pictures obtained are of very high quality and use magnetism rather than x-rays. The scan process is painless
but somewhat claustrophobic, and can be noisy.
MRI/CT contrast
A dye injected into the veins to improve MRI and CT scan pictures.
The fatty protein coat around nerve fibres. Myelin sheaths increase the speed at which electrical impulses or messages
Nerve cell (Neuron)
The basic functional unit of the nervous system. These specialised cells transmit chemicals and electrical impulses and
so carry information from one part of the body to another.
Nerve fibre
A long thread that extends from a nerve cell and carries nerve impulses. Bundles of nerve fibres running together form a
Refers to conditions occurring in the nervous system, including the brain, spine and all the peripheral nerves.
A hospital doctor who is specially trained to diagnose disorders of the brain, spinal cord, nerves and muscles, and to
treat them with medical interventions if appropriate.
Another term for a nerve cell. They are the key cells in the central nervous system that produce and carry the electrical
impulses or messages that translate our thoughts into actions. Their long projections or extensions are called axons.
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Further Reading
Glossary (adapted with permission from the Brain and Spine Foundation web site)
A chemical messenger used by the nerve cells.
Nervous system
The vast network of nerve cells which carries information to and from all parts of the body in order to bring about
bodily activity. It is classically divided into the brain, spine and peripheral nervous system.
Occupational therapy
Occupational therapists help people regain their independence and adapt to any disability. They can recommend
special tools to help people perform everyday tasks more easily and can also recommend adaptations to the house,
such as hand rails, bath seats and stair lifts.
Optic neuritis
Inflammation in the nerve which joins the eye to the brain (the optic nerve).
A doctor who specialises in children’s medicine.
Maximising movement ability and controlling pain in the joints, muscles and bones.
Positron Emission Tomography scan (PET scan)
This is a scan that provides three-dimensional pictures that can show the chemical activity of the tissues being
Post-traumatic Amnesia (PTA)
A period of confusion and disorientation following coma and which may last for hours, days or weeks depending on
the length of coma. The person in PTA is unlikely to remember anything of this period of their recovery..
A branch of medicine concerned with mental illnesses.
Someone involved in the scientific study of the mind and mental processes.
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Further Reading
Glossary (adapted with permission from the Brain and Spine Foundation web site)
This refers to the overall process of ensuring that people make the best possible recovery. It usually involves help from
a range of health and social care professionals.
The examination of the body or part of the body using CT or MRI.
Speech therapy
The rehabilitation of patients who have difficulties with communication and/or swallowing.
The sensations or feelings reported by patients which tell them that something is wrong.
Spinal cord
The main nerve trunk of the body that runs from the brain downwards towards the lower part of the back inside a tunnel
of bones in the backbone called the vertebral column.
A group of hormones occurring naturally in the body and medications based on them.
A patient is symptomatic if he or she experiences symptoms. A condition becomes symptomatic when it starts to produce symptoms, even though the condition itself may have been present for some time beforehand.
Speech therapist
A specialist in helping people with speech, language, communication and swallowing difficulties.
Isolated, infrequent or unconnected cases of a condition.
The creation of an opening in the trachea (windpipe) through the neck for the insertion of a tube to assist breathing.
A machine designed to move air in and out of a person’s lungs to assist breathing mechanically (a life support machine).
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Pathways through a Medico-Legal Investigation
Written by Anne Cassidy and Tim Spring, Moore and Blatch Solicitors
In a small minority of cases the outcome of encephalitis is made worse by sub-standard treatment. The most common
problem is delay in recognising encephalitis as a possible diagnosis leading to delay in giving effective anti-viral drugs.
Other treatment failures can, unfortunately, also occur.
In the rare cases where recovery from encephalitis is compromised by poor medical care there is a legal entitlement to
financial compensation. Because encephalitis can be such a serious illness, that entitlement can be of great practical importance both to the person who has been ill and to his or her family.
How to start a medico-legal investigation
The first step is to contact a specialist solicitor, who should be able to give you preliminary advice without any charge or
obligation. There are a number of things we would expect a solicitor to talk to you about at this very early stage and the
following is a brief outline.
Obtaining the medical records
The medical records will show what the medical staff thought and did and this is very important evidence in working out
whether things were done properly. If there were visits to a GP before the admission to hospital, both sets of records will
be relevant. Ultimately all medical records, including those made during rehabilitation, may be needed to give a complete
picture of the clinical outcome.
The rule is that record holders (the GP’s surgery or the NHS Hospital Trust) should disclose a complete copy set of the
records in their control, including any X-rays or scans, within 40 days of a proper request being made and for a charge of
no more than £50
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Pathways through a Medico-Legal Investigation
Recording your own account of what happened
The other source of evidence about what happened during the illness is your memory and the memory of any relatives
and friends involved. It is a good idea to make a note of how the illness started, how it developed and what the medical
staff were told about it. Include dates and times and tell the story in as much detail as you can remember. The note does
not need to be written in any formal way, but the earlier you write it the more likely it is to be accepted as accurate if there
is any dispute about the facts of what happened.
The NHS complaints procedure
There is a well-defined NHS complaints procedure. The way in which it is operated may vary in quality from place to
place but it can be a very useful method of exploring the issues. Many GPs and hospitals will do their best to give a clear
and straightforward explanation of what they did and why, offering an apology if they believe anything went wrong. Many
GPs and hospitals will also use complaints to learn lessons which will improve treatment of other patients in the future.
Importantly, any notes / statements / reports generated by the operation of the complaints procedure should be disclosed
if it turns out there is a valid claim to be made.
The intention is that any complaint should be made promptly, within 6 months of the treatment. It is best to make the
complaint in writing and in detail. You can address your complaint to the GP or the Chief Executive of the Trust which
runs the hospital. All NHS Trusts have someone whose job it is to investigate complaints and prepare a response for
approval by the Chief Executive.
A complaint is meant to be acknowledged within 2 working days and answered within 20 days. It can often take longer
than 20 days to deal properly with a serious complaint because the doctors involved will need to review the medical
records and write a response. You and / or your solicitor should be patient but firm in pressing for a full reply.
If you think the reply to you complaint is inadequate you can take the matter further. You can involve the Healthcare
Commission and ultimately the Health Service Ombudsman. There is a duty on the GP or hospital to explain all this to
you, with contact details.
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The complaints procedure does not include any possibility for financial compensation and the NHS will not deal
with a complaint if you are making a claim at the same time. In some ways this is an artificial distinction. If you
have concerns about treatment you are entitled to use the complaints procedure to find out how the GP or hospital
explain what happened. If you are not satisfied with that explanation you are entitled to go on to make a claim for
compensation, using the extra information the complaint has given you.
Making a clinical negligence claim
To succeed in a claim you need to prove a departure from proper standards of medical care. You also need
to prove that the end result of the encephalitis is worse than it would have been with proper treatment. Most
commonly, you need to show that any competent medical team would have recognised the possibility of encephalitis
earlier and that the outcome would have been significantly better with earlier anti-viral treatment.
The standard of proof is lower than in criminal cases. You only need to show it is more likely than not you are
worse off because of the departure from proper medical standards. You do not have to prove it “beyond reasonable
How do you go about proving these things? The answer is by getting independent medical experts to go carefully
through the evidence about what happened - the medical records and your witness statements - and to give
a written report. It is important for your legal team to choose appropriate experts, instruct them properly and
consider critically what they say.
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The financial compensation
There are two elements to the potential compensation.
The first element is an attempt at compensation for the injury itself. On the basis that no sum of money, however
large, can make up for a serious injury, Judges refer to a scale which has a top limit of about £250,000 for the worst
brain injuries.
The second element is compensation for the financial impact of the injury on the particular person who has suffered
it. The idea is to provide reimbursement for financial losses (such as loss of earnings) and financial expenses (such as
the cost of care). This second element is the one which makes up the great bulk of the substantial settlements which
are reported.
The mechanics of a claim
Once your legal team has established that you have a valid claim, by obtaining supportive independent medical expert
evidence, the process is essentially one of exchanging information, according to a timetable set by the Court, so that
both sides can assess the strengths and weaknesses of their position and think about whether they should make or
accept a settlement offer.
The first formal stage is to send a “Letter of Claim” setting out your version of the facts and your allegations about
what went wrong. The GP and / or the NHS Trust have three months to consider the Letter of Claim with their legal
team and independent medical experts before replying with a detailed “Letter of Response”. This exchange of letters
defines the extent of the legal argument. It is not unusual for significant admissions to be made at this stage but
because the potential compensation is often very substantial most claims will go further before settlement. A Trust
might, for example, admit that anti-viral drugs should have been given at an earlier stage but go on to say that earlier
treatment would probably not have made any difference.
The exchange of information will continue. You will see the doctors’ witness statements and your opponents’
independent expert medical evidence. A “Schedule of Financial Losses” will be prepared to itemise loss of earnings
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A date will be set for a Court Trial, but in the great majority of claims the evidence makes some compromise appropriate
and a settlement is negotiated. Less than 5% of clinical negligence claims end in a Trial.
Funding a claim
A solicitor will discuss funding issues with you in detail. Many people are very nervous about legal costs and we hope
this brief outline helps.
There are two aspects to funding:
Your own legal costs: your solicitors’ charges and the fees
charged by your independent expert(s), your barrister and
the Court.
Your potential liability for your opponent’s legal costs if you
lose your claim.
“It is your solicitor’s job to make
sure that the medico-legal investigation
and any claim are dealt with
cost effectively.”
It is your solicitor’s job to make sure that the medico-legal investigation and any claim are dealt with cost -effectively.
You should be kept closely informed about the work being done.
The main methods of funding a claim are as follows:Legal Aid
The availability of Legal Aid is subject to financial limits. This is usually no problem for children, but many adults will
not be eligible because they are too well-off. The first point to note is that a couple’s finances are assessed together.
If a couple has an income of more than about £2,300 per month or capital of more than £8,000 legal aid will not be
available. If a couple own their own home any equity in it over an £100,000 counts towards their capital.
Where legal aid is available, it will cover all your legal costs as well as giving you protection against any potential
liability for your opponent’s costs.
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Legal Expenses Insurance
Many people have legal expenses insurance without realising it. Your solicitor will ask to check any insurance policies
you have. Again, if you have insurance it will cover all your legal costs as well as giving you protection against any
potential liability for your opponent’s costs.
Conditional Fee Agreement (“No win, No fee”)
If you are not eligible for legal aid and do not have legal expenses insurance, a solicitor may agree to act for you on
the basis of a conditional fee agreement. This means that your solicitor will only be paid if your claim is successful. A
barrister can also act for you on the basis of a conditional fee agreement. Using this method of funding, there will still
be independent experts’ fees and Court fees to be paid. Your solicitor will ask you in advance to approve any such
expenses. Your solicitor will also advise you if at any stage you need to take out insurance to cover potential liability
for your opponent’s costs. If you do need to do that, it is often possible to defer the insurance premium until your
claim has been settled.
This means paying for the work done by your solicitor at an agreed hourly rate. Your solicitor should keep detailed
records and give you regular updates.
If you start out on a privately-paying basis, it is often possible to convert to a conditional fee agreement once you
have independent medical expert evidence to support your claim.
Dealing with solicitors
You should think of your solicitor as someone with a particular professional expertise you are employing to deal with
a particular problem for you. Solicitors who deal with clinical claims are very used to dealing with injured people and
should be sensitive to the stresses and difficulties involved where a medico-legal investigation is being made against
the background of a serious illness.
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Clinical claims do take a long time. A period of two years from first enquiry to settlement would count as a quick
resolution. The reason claims take time to resolve is that:
the investigation has to be methodical if the evidence is to stand up
there is often a waiting-list for independent medical experts whose opinion is respected
there is often a lot of money at stake
your legal team cannot be sure what a fair level of compensation would be until it is clear both that the
injury has stabilised and, for example, what the best arrangements are for any future care which is going to
be needed.
Most people receive a good standard of treatment when they become ill with encephalitis. For a few people the
long-term consequences of a very serious illness are made significantly worse by a poor standard of treatment. In
those cases there will be an entitlement to financial compensation through a clinical negligence claim. That is not
something to be undertaken lightly, but a successful claim can make a difference to a family’s quality of life. If you
want to explore the possibility of a claim you should speak to an experienced solicitor, who should be happy to
give you preliminary advice without any charge or obligation.
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Encephalitis is an often life-threatening illness caused by infection, usually viral, or by autoimmune diseases affecting the brain.
It can occur at any age but is considered fairly uncommon.
Subsequently many people are left with an acquired brain injury, the degree and severity of which will vary.
The Encephalitis Society is a national charity and the only organisation of its kind in the world dedicated to supporting people
affected by encephalitis and the professionals who support them.
This book provides a comprehensive guide to the illness. It covers the illness, the possible consequences of the
illness, the specialisms and services that can help, accessing benefits, returning to work and acknowledges the needs of the
whole family.
Copyright 2013 Encephalitis Society
Published by the Encephalitis Society
The Encephalitis Society
Support, Awareness & Research for Inflammation of the Brain
Photographs: Courtesy of the Encephalitis Society