Spring 2007 - Encephalitis Society

The Encephalitis Society
action for support, awareness and research
Newsletter
No. 39 - Spring 2007
Encephalitis Information
DVD launched with
Celebrity friends
Our new Information DVD was launched in Leeds on
Monday 12 March to an invited guest list which included
our Patron Martin Kemp, Mathew Bose, Liz Estensen,
Chris Villiers, Georgia Slowe, and Julia Mallam (all cast
members of Emmerdale), friends and supporters of the
Society along with members who had contributed to
the DVD.
The evening began with addresses from our five keynote
speakers. Ava Easton , Development Manager for the
Encephalitis Society began by welcoming everyone and
thanking all those who had supported the DVD and the
launch event that evening.
Martin Kemp and Mathew Bose - photo courtsey of
Yorkshire Evening Post
Ava introduced and officially welcomed our new Patron,
Martin Kemp , at this, his first public appearance for the
Society. Martin described his personal experiences of
neurological trauma, observing that he felt the most
isolated and unsure, not in the hospital, but in the
mo nths a nd y e a rs tha t fo llo we d d uring his re c o ve ry.
He highlighted the value of the DVD in addressing fears
and uncertainties for people during this stage of their
recovery and concluded by thanking and congratulating
the Society on their work, encouraging everyone to come
and talk to him during the evening.
Prof. Barbara Wilson , in her speech reiterated Martin’s
thoughts and also congratulated the Society on its
energy, enthusiasm and support provided to people affected and their families.
Kath Lewis , Director of Moving Media recounted having spent the last couple of years working with the Society
capturing footage and editing the DVD to bring it to its current form. Kath expressed her pleasure in working with
the Society not only on this project but also on other recent publications, and is looking forward in anticipation of
the next project.
The presentations concluded with Sarah Hill , a member of the Society and key participant in the production of the
DVD. Sarah recounted her experiences and considered the value that the DVD would have had for her earlier in her
recovery. Most of all she inspired people affected and their families to continue making progress and look to the
future.
F ollowing the pre s e nta tions a moving a nd powe rful pie c e of the a tre c a lle d R e - wire d wa s pe rforme d by Q ua lia T he a tre .
The performance considers the juxtaposition of personal experience of acquired brain injury with that of the observed
experience by clinicians. Further information on Qualia Theatre and Re-wired is on page 10.
Everyone took the opportunity to spend the rest of the evening sampling good food and wine. Martin Kemp, Mathew
Bose and all the actors and actresses from Emmerdale spent time chatting to everyone and obliging with countless
photo opportunities.
The Society cannot thank them, and everyone who supported and attended the event, enough in making the launch
a wonderful and unforgettable experience.
Thank You!
CONTENTS
2 Focus on Fundraising
6 Limbic Encephalitis
11 Meetings
14 Published Articles
Focus of Fundraising
5
Compassionate Friends
8 Synapse Article
12 CBIT
15 Bricks and Mortar
10 Re-wired
13 Bits and Pieces
16 Back Page
Focus on Fundraising
A really big Thank You to all our
Fundraisers who have made this year
an exceptional year.
It’s no mean task getting fit for these Marathons. Tim
Clarke‘s wife Tracy, who has had encephalitis, endured
6 months of not really seeing him whilst he trained for
the event. But presenting the Society with a cheque for
£3179 made it all worth while. Tim would like to thank all
his sponsors especially Severn Trent and Mary Cartledge
who organised a Craft Day.
The Clarke Family outside the Resource Centre
More sweat
Bristol half Marathon - Harriet Corbett raised £200.
Manchester 100 Bike Ride - on 3rd September 2006 the
ASDA Distribution Centre at Ince in Wigan entered a team
of 13 lads raising £511. Cabbage Patch 10 - Andy Cox
raised £390. Mrs Jill Neeve together with family, carers
and friends took part in a sponsored walk and raised £323.
Mrs V.A Haw completed a sponsored walk raising £250
and Adrienne Michael-Ives raised £150 in the Stevenage
Half Marathon.
Putting the Fun into Fundraising
The lads from Ince completing the Manchester 100
Bike Ride
James Pratt presenting his cheque at the DVD Launch
A Fun Day was held at Costcutter in Chippenham raising
£165 in memory of Paul Davis who was a trainer manager
at the store. James Pratt persuaded the Hod Carrier Pub
to hold a Quiz, Raffle and Prize Auction raising £1475.
Cameron, Petreco Process Systems held a Christmas
Fundraising event, and donated £300 in memory of one
of their employees partners. Student Services at the
University of Manchester held a non-uniform day and
raised £115. Yvonne Price had a baking day and sold
the produce to work colleagues, she also decided not
to send Christmas cards and sent a donation of £185.
DHL Supply Chain raised £844 at the annual Christmas
Raffle. Theresa McGowan organised Carol Singing at
the Waitrose Store in Ringwood, Hampshire and raised
£300. Waitrose store added a further £200. The Guides
of the 1st Sholden Guides raised £125. LTI Vehicles raise
funds each year for the Coventry Myton Hospice: 2006
was an especially good year so £250 was also donated
to the Encephalitis Society. Miriam Mackie held a Concert
of Choral music to launch a CD of her compositions and
raised £210
Donations
Mr and Mrs Hennesey donated £350 in lieu of Christmas presents – both given and received.
Donations sent in lieu of Mr and Mrs Ransom Golden Wedding totalled £410. The friends and family of Claire
Hargreave’s Mum, Catherine, donated £570 for her 60th Birthday.
And Grants
The Noswad Charity made a grant of £750 at the request of Nicholas Bardswell.
EAD Solicitors sponsored the Professional Seminar held in Liverpool in January with a grant of £750.
BAE Systems Charity Challenge in Brough donated £1,000 following the request of Cath Agnew.
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Encephalitis Society Newsletter - No. 39 Spring 2007
Focus on Fundraising
Sylvian Aitken Trust gave a grant of £2,000 towards our support work with those affected in Scotland.
The Alexandra Rose Day gave a grant of £1,000 towards the cost of Support meetings.
The Trustees of The Friendly Hand have agreed to provide funds towards the next Retreat in 2008 with a grant of
£9,000 and The Four Acre Trust has given a grant of £6,000 toward the activities and care cost of Teenagers / Young
People attending the Center Parcs weekend in November.
Donations made In Memorium
Mrs Edith Hepworth donated £1,000 in memory of her daughter Ruth McLeish.
£1003 was sent in memory of Terry Snowball, who will be sorely missed at the Retreat
next year.
£1084 was sent in memory of Miss Jodie Susannah Swindell. £315 in memory of Rakesh
Patel who was diagnosed with encephalitis in January 2006 and died in September
2006.
Bereaved families are often our major fundraisers, putting an unstinting amount of effort
into raising money that will benefit others. They are applauded for being able to direct
their grief into helping others. Three families deserve a special mention.
Andrew Swift
The family and friends of Andrew Swift have organised several Charity Fundraising
E ve nts , inc luding s k y diving, a box ing ma tc h a nd a girl’s footba ll ma tc h ra is ing £ 2 0 0 0 .
Their most recent venture was a Halloween Ball which raised a further £1358.
Friends of Andrew Swift,
enjoying life as he did.
Daryl Dyke
Daryl Dyke was a fit young rugby player when he became ill with
encephalitis and died after a short illness. His large and loving
family have been devastated. Their grief too has been directed
into action - running marathons and swimming in very cold water
on Christmas Day! In all we have received over £3,500 in memory
of Daryl.
The family and friends of Daryl Dyke “in the
swim” on Christmas Day.
The British 10k London Run 2008 –
runners needed
The British 10k is a race through the heart of London. Each year the Society buys
places in this Fun Race which at 10k is an achievable distance for the less fitter
of us. The Society supports the runners with a pack of information, sponsor
forms, Tshirts and advice on getting sponsorship. The run will take place on
Sunday 6 July next year, 2008.
There may also be places available for this year’s British 10k London Run
taking place on Sunday 1st July.
For further information contact Jon Ainley on 01653 604362, email
jon@encephalitis.info
Encephalitis Society Newsletter - No. 39 Spring 2007
3
The Compassionate Friends
In this article the term “child” is used in the widest sense and includes adult children as well as
those under the age of 18.
The Compassionate Friends (TCF) was started in the UK in 1969 and has now spread worldwide.
Our current chairman, Diana Youdale has written: “The role of chairman in any charity can be
challenging, but even more so when the charity is one where we have all paid the ultimate price of
the loss of a child, sibling or grandchild. Life becomes even more complex in a society that does
not openly acknowledge death and the overall impact that it can have on both the individual and the
family...Each year a minimum of 20,000 parents experience the heartache of losing a child and invariably
social isolation. When your child dies you quickly learn that some of the most valuable support you receive is from those who
have suffered as you are suffering. Their insight and experience creates an instinctive bond of mutual understanding which
enables you to talk freely and see for yourself that although there is no cure there is hope of a return to some sort of worthwhile
future...We cannot change the fact that our services will always be needed, as we cannot change the fact that one day we will
all die and sadly for our child that day came sooner rather than later. But we can help change how we are treated and how
we eventually learn to cope and reinvest in life.” (‘A Year in the Life of The Compassionate Friends’, 2007).
TCF is a national charity, a lifeline to parents who have lost a child. We offer support when emotions are at their most intense
and despairing, and in the years to follow, just as long as compassion is needed to cope with the loss of a child. We run a
national helpline and website plus a team of volunteer contacts and local networks with retreats, family weekends, a quarterly
journal, a quarterly newsletter, and postal library. We also organise annually a National Gathering in the UK and a Scottish
Forum. We provide opportunities to meet, share, learn and, most importantly, draw comfort from being alongside other
families in bereavement.
As one of our members has written: “To lose a child is a parent’s worst nightmare.” Perhaps only a genius, such as William
Shakespeare, can put into words that terrible first moment of loss of a child, when in his play ‘King Lear’ the King enters
carrying his dead daughter and cries:
“...No, no, no life?
Why should a dog, a horse, a rat have life,
And thou no breath at all? Thou’lt come no more.
Never, never, never, never, never!”
In contrast to that howl of grief, we provide below some quotes from members of TCF, some of whom are facing up to the
pain of immediate loss and others who have been members for a number of years. They have in common a bond with others
sharing the same fate and are able to take strength from mutual understanding and compassion.
“ We could pass for normal on the street. It’s only inside we feel different.”
“Our TCF friends are very special. For those of you who are just starting your journey without your children, I can say this to
you, life is never the same but if you reach out to others, your pain will become softer, your wound will become a scar.”
We hope that this brief description has given you some understanding of what TCF is trying to achieve. More about us can
be found on our website www.tcf.org.uk , or you can phone our National Office on Tel: 08451 20 37 85.
Michael and Barbara Wilson
Encephalitis Society Newsletter - No. 39 Spring 2007
5
Limbic Encephalitis
The brain could be regarded as being in three parts. The brain stem is the most primitive part and sits above the
spinal cord at the base of the rest of the brain. The brain stem plays a vital role in basic attention, arousal, and
consciousness. All information to and from our body passes through the brain stem on the way to or from the brain.
The brain stem is responsible for many of the functions that give us life such as breathing, heart function, sleep wake
cycle, temperature control.
Wrapped around this basic brain is the “limbic brain” or intermediate brain. It includes the hippocampus, thalamus,
hypothalamus and amygdala which are involved in memory and much of the behaviour related to sex, hormones,
food, fight or flight responses, the perception of pleasure and competition with others. The limbic brain is the seat
of higher emotions including the protection of the young and feelings such as love, sadness and jealousy.
The third and major part of the brain is the neocortex, the rational brain. The neocortical brain provides logic and
thought, it is the seat of processes such as speaking, planning and writing.
Limbic encephalitis, implies inflammation in the limbic system. It is therefore an anatomical diagnosis and not all
cases share the same cause.
Causes of Limbic Encephalitis
All types of encephalitis fall into 2 main categories:
Infectious encephalitis – caused by direct invasion of the brain by an infectious agent, usually a virus.
Auto-immune encephalitis – caused by the person’s own immune system reacting against itself.
Infectious causes
Any infection of the brain can potentially cause an inflammation of the limbic area of the brain. A number of viruses
appear to target this area and can, but not always, include the herpes simplex virus. Some people may therefore be
given the diagnosis of “limbic encephalitis” whilst others may be given the diagnosis “herpes simplex encephalitis”
for the same condition. It would be clearer for people affected by encephalitis affecting the limbic system if both
terms were used – “herpes simplex encephalitis affecting mainly the limbic area of the brain” – but that is rather
long winded!
Autoimmune causes
Autoimmune encephalitis presents with many of the same symptoms (e.g. memory loss, seizures and confusion) as
infectious encephalitis but a causative virus, such as herpes simplex, is not present. In fact, the cause is an antibody
- made by the immune system.
Antibodies are made by all healthy individuals in response to infections or after vaccination. The antibodies attack the
infectious agent (such as a virus) and help the body’s immune system get rid of the infection. The immune system
has to make literally millions of different antibodies in order to combat effectively different infections. It also makes
antibodies to damaged or abnormal tissue, such as cancer tissue. Unfortunately, a few of these antibodies may
“cross-react” with the patient’s healthy tissue proteins, attacking the tissue and causing an autoimmune disease.
There are two forms of autoimmune limbic encephalitis, paraneoplastic limbic encephalitis (PLE) and non-paraneoplastic
limbic encephalitis (NPLE).
Paraneoplastic limbic encephalitis (PLE) occurs in a small proportion of people with particular cancers. Most
individuals with PLE will turn out to have a cancer of the lung, thymus gland, the breast or the testis. In many cases,
PLE can be diagnosed by testing for one of a group of paraneoplastic autoantibodies in the patient’s blood. These
antibodies are made by the patient in their attempt to attack the cancerous tissue. The condition may improve or
at least stabilise if the cancer is detected and treated effectively, but unfortunately in many cases the tumour proves
difficult to identify or the treatment does not cure the patient’s neurological symptoms.
Non-paraneoplastic limbic encephalitis (NPLE)
NPLE has only been clearly recognised in the last five years. Doctors began to identify patients who had the
symptoms of paraneoplastic limbic encephalitis but who did not have any of the marker paraneoplastic antibodies
in their blood and never developed a tumour. Moreover, some of these patients got better if they were treated with
drugs that suppress the immune system It is becoming increasingly clear that NPLE is caused, at least in part,
by specific antibodies in the patient’s blood that target the patient’s brain tissue, particularly the hippocampus and
other limbic areas. The antibody binds to a protein, present in all brain tissue: the potassium channel. This causes a
reduction in the number of potassium channels, decreasing the control over electrical signals operating in the brain.
Potassium channels are proteins that lie in the surrounding membrane of nerve cells in the brain and in the nerves
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Encephalitis Society Newsletter - No. 39 Spring 2007
Limbic Encephalitis
that lead to the muscles of the skeleton, the gut and the heart. They are particularly common in the hippocampus
and other limbic areas of the brain.
This syndrome has been called voltage-gated potassium channel (VGKC) antibody-associated encephalitis. It
is thought that this type of autoimmune encephalitis is currently under-diagnosed and, hence, under-treated. The
main reason for this under-diagnosis is the current lack of awareness of the condition. Also, it does show marked
similarities to infectious encephalitis, in its symptoms and brain imaging features, making differentiation difficult.
The diagnosis of autoimmune encephalitis is particularly important because the disease is potentially treatable, using
immunosuppressive drugs such as steroids. As this syndrome was only described recently, there is still much to
be done to raise awareness amongst clinicians. Future research aims to understand the biological mechanisms by
which this antibody affects the potassium channels, and hence causes disease. Researchers also hope to discover
further antibodies which may allow other autoimmune encephalitides to be diagnosed.
This article has been compiled by the Encephalitis Society in conjunction with Dr Sarosh Irani, Prof. Angela Vincent
and Dr Camilla Buckley from Oxford NHS Trust.
Michelle’s Story
I am writing about my mother, Vera Gardner, who died in July 2004 from status eplipticus and limbic encephalitis
with serum voltage gated potassium channel antibodies.
My mother was an active 78-year-old who experienced a grand mal fit in May 2004. When she was taken to hospital
she recovered and was sent home that day without any treatment. Over the next couple of days she had absence
attacks and was admitted to a general hospital. Blood tests and x-rays were taken and she was found to be suffering
from low blood sodium and an e coli urine infection. She was treated with antibiotics and placed on a water restriction
regime to bring her sodium level to normal.
During this time my mother suffered memory problems and seemed “changed” in some way. She was being heavily
sedated at hospital and not improving. It was agreed she could be discharged and could return for further tests if she
did not improve. My sister and I cared for her at home for 8 days. Although she improved her sodium level remained
low and she still did not seem to be the same person. My mother did not refer to us by name and although she was
comfortable with us did not really seem to connect with us. However, when she was doing an activity such as word
searches and jigsaw puzzles she was perfectly fine.
As my mother was not improving we asked she be assessed for possible readmission or help at home as my sister
had to return to work and I home to my three young children. We both lived 2 hours drive away from her. My mother’s
doctor decided not to visit and the District Nurses examined her. It was decided that she should be sent to a hospital
for the elderly where her low blood sodium would be treated.
Following one night in hospital she deteriorated very badly. She lay prone in bed with a very bloated abdomen. We
feel she probably had a seizure in the night. She did recover to how she was when she entered but the hospital
failed to control her blood sodium with restricted fluids or medication. It was becoming clear that something was
very wrong with her. She had more fits and was prescribed anti-convulsants but they did not control her fits and she
experienced terror attacks, hallucinations and became very sleepy.
My mother continued to deteriorate and my sister and I urged that she should be transferred to a hospital with more
specialist staff and equipment where the problem could be assessed. This was not forthcoming. From entry into
the elderly services hospital it took 5 weeks for her to have a MRI scan and to be seen by a neurologist. It took a
further 10 days for the consultant to examine the films. An EEG was performed after 2 weeks but was misreported
as being normal.
The nursing staff at the hospital were general nurses who failed to recognise her epileptic episodes and she deteriorated
until she could not eat or drink. After 7 weeks my mother was transferred to a neurological ward where they were
able to determine she had limbic encephalitis with serum voltage gated potassium channel antibodies. She died a
week later.
From research on the Internet I have noticed that this condition is being identified more and patients can recover
spontaneously and respond well to immunotherapy treatment following prompt diagnosis.
Michelle Reeve
Encephalitis Society Newsletter - No. 39 Spring 2007
7
Synapse Article
The following two articles first appeared in “Synapse” the newsletter of the Brain Injury Associations of Australia and
are reproduced with their permission. www.biaq.com.au
Perseveration
Perseveration may be defined as repetitive and continuous behaviour, speech or thought which restricts new learning
and adaptive functioning.
Perseveration disorders were first identified and described in 1895. Since then, the term has been used in literature
to label the inappropriate recurrence or continuation of a behaviour after a distinct change in task requirements. Over
the years, perseveration behaviours have been frequently observed in a variety of patients with brain disorders.
Perseveration and brain injury
Perseveration produced by brain injury is exhibited in many different forms. Over the years investigators have
generated various classification groups and labels to categorise the wide range of perseverative behaviours. Despite
some variation in classification labels and differing views about the underlying neuromechanisms, the cognitive and
neurobehavioral characteristics of perseveration described by each other were significantly similar for three basic
categories of preservation. These three basic types are:
·
·
Continuous preservation (inappropriate prolonged continuation and repetition of a current behaviour)
Recurrent perseveration (unintentional and inappropriate repetition of a previous behaviour to a current task
demand)
· Stuck in set perseveration (inflexible maintenance of an inappropriate cognitive behavioural response in the face
of changing task requirements).
Stuck in set perseveration is often encountered in brain injury assessment and rehabilitation. It often manifests as a
failure to inhibit or stop previously established maladaptive behaviours and replace them with more adaptive ones.
Treatment
Preservation can be treated by behavioural and cognitive training in a structured environment, and possibly by group
therapy or medication. Request a referral to a Clinical or Neuro Psychologist for help with this problem.
Improving self confidence
A brain injury has a massive impact on how we feel about ourselves – unfortunately it is rarely for the better.
A brain injury can directly lead to depression and fatigue, which have a major impact on self esteem. A group of
brain injury survivors once met to discuss and find strategies for issues such as self confidence. They felt the key
components to confidence were having a purpose to life, feeling loved, doing well in your chosen role, having hope
for the future and being content with who you were. A brain injury was seen as impacting on every issue discussed,
with the result that self-confidence was always a problem following a brain injury.
Key factors in self-confidence
The group found that the degree of understanding shown by people close to them, and the reaction of the general
public made a big difference to how they felt about themselves. Families who understood the effects of the brain
injury, and were supportive instead of critical, played a major part in the brain injury survivor feeling more confident.
This issue was a difficult one when there were no outward visible signs of a brain injury, such as a wheelchair or
facial scarring. In these cases, families were more likely to be critical of the survivor’s cognitive problems. Those
who constantly compared their current situation and abilities with their situation before the acquired brain injury had
more trouble with self-confidence, as did those who could not cope with negative comments from others.
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Encephalitis Society Newsletter - No. 39 Spring 2007
Synapse Article
Assertion
Assertion was seen as critical in becoming more confident. Many felt that they tended to be resentful and sullen, or
became abusive and aggressive in conflict situations.
The passive approach was seen as letting others stand on them and push them around. It also involves agreeing
with others despite personal feelings. This often led to resentment and levels of distress building up over time. The
aggressive approach was viewed as people getting their own way by arguing, making demands, threatening and
generally stepping on others. Although people who use this approach may get their own way a lot of the time, others
often did not want to be around them so isolation would occur.
They discussed how the ideal is two-way communication, in which problems are solved and the message is put across
in a way that allows people to feel good about themselves. Survivors knew that they needed to work on communication
skills so that they could see the other person’s viewpoint and know how to approach topics appropriately.
The group agreed that body language was an important part of being assertive, including maintaining eye contact,
straight body posture and calm speech. Sometimes it helped to practice what they had to say by practicing with
another person first.
Personal strategies for self confidence
Brain injury survivors have suggested the following personal strategies for feeling better about themselves:
·
·
·
·
·
·
·
·
·
·
·
·
·
·
·
Hang around positive people
Become more self aware and get rid of negative, unhealthy, unproductive thoughts
Take up hobbies you enjoy
Set realistic goals, recognise small gains and achievements and reward yourself
Use problem solving skills for bad times
Help someone else
Practice relaxation
Write a poem or essay that has personal meaning to you
Work on meeting new people and improving existing relationships
Be assertive and communicate your needs to others - do something social every week
Persist, despite setbacks
Join a support group for survivors
Look after your health by eating well
Get into positive books and movies
Grasp opportunities, experience life and make the most of it
Mantras
Some survivors have found mantras useful. These are personal statements or affirmations that can help you get
through a tough time.
Some examples are:
·
·
·
·
·
If I change my thoughts I change my world
If it is to be, it is up to me
Always stop and think before you act
Learning is an active process and I will learn by doing
Actions speak louder than words.
Many people take comfort in the centuries old prayer “Grant me the serenity to accept the things I cannot change,
courage to change the things I can, and wisdom to know the things I can, and wisdom to know the difference”.
Encephalitis Society Newsletter - No. 39 Spring 2007
9
Re-wired
Re-wired
Re-wired is a short piece of theatre which was devised by
Qualia Theatre over a series of workshops and rehearsals.
Much of the written research came from the book ‘In the
Shadow of Memory’ by Floyd Skloot.
When creating the piece the aim was to explore what it
means to recover from acquired brain injury and come to
terms with becoming a different person as a result. Qualia
Theatre wanted to portray the idea that if the physical cells
and connections in your brain change then your personality
changes; you change.
This was approached from two different angles - the human
and the scientific. Ellen Dowell, Director of Qualia Theatre
said “I was very interested in juxtaposing the technical side
of brain injury - neurons, synapses, electric and chemical signals, with the emotion of how that makes someone
feel”. In the play this was personified by the two characters; one a scientist/doctor who is observing / experimenting
/ explaining and the other a young woman who is recovering from acquired brain injury and learning to cope with
her daily routine.
In addition to the two actors a musician plays the cello, reflecting and echoing the woman’s emotional state of mind
with the music. The set design is a sculptural mass of light bulbs which on one level represent the neurons and
brain activity of the young woman. They work in the same way as the music by echoing the woman’s ‘rhythm of
consciousness’ with the intensity and flickering of different light bulbs.
Ellen Dowell is the daughter of Elaine Dowell who founded the Encephalitis Society. The driving force behind the
production is her experience of being part of a family affected by encephalitis. Elaine’s son, Ellen’s brother, was ill
with encephalitis at the age of 7 and now needs 24 hour care.
Performances of Re-wired have taken place at the Encephalitis Professional Seminar in Liverpool in January, at the
DVD Launch in Leeds and at the DANA Centre in London www.danacentre.org.uk during Brain Awareness Week.
Qualia Theatre are currently planning their next project. This will be a full length piece of theatre exploring what
it means to live through acquired brain injury. The research and development phase for this project will involve
interviews, workshops and discussions with people who are affected by an acquired brain injury as well as medical
professionals and neuroscientists. If the project goes ahead the Encephalitis Society will be involved, details will be
in later newsletters. For more information on Qualia Theatre go to www.qualiatheatre.co.uk
A definition of Qualia
Qualia are a core aspect of consciousness. They are the subjective properties of sensations, feelings,
perceptions, thoughts, ideas and desires.
A quale is utterly personal. No one will ever understand your qualia and you will never understand another
person’s because the only way to know is to experience. What is it like to feel the touch of cotton, see
the colour white, or hear a cello playing? What does it feel like to have an idea, to be excited, or to long for
something? We can describe these sensations through metaphor but we can never truly know whether what
we feel is the same as what everyone else feels.
This one off drama production was shown on BBC One on Sunday 25th February 2007. It starred David
Tennant and Sarah Parrish in a poignant tale about brain injury and its impact. Details of the drama and a
short preview can be found at http://www.bbc.co.uk/drama/recovery
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Encephalitis Society Newsletter - No. 39 Spring 2007
Encephalitis Meetings in 2007
Each year the Society holds support meetings across the UK and
Republic of Ireland. The meetings are usually held on Saturdays
and have three main functions.
·
·
·
To gain information. Experts on various aspects of the condition
are invited to speak, enabling those attending to obtain further
information and insight into the condition. It is probable that some
of those affected will become more expert on encephalitis than
many health professionals: this empowers them and gives them
confidence in making the case for the services and therapies that
they require.
To provide an opportunity to meet others affected by encephalitis.
Such opportunities are vitally important in reducing the feelings
of isolation which many people have when trying to cope with a rare condition that few if any of their friends and
relatives have heard of and whose implications they are unable to understand.
To give members and staff of the Society the opportunity to meet together. It is essential that members are able
to offer constructive feedback on to their views and on the services we provide, contributing to our development
and enabling us to respond effectively to the needs of our membership.
The locations chosen for the 2007 meetings are
12th May
London, the Charity Centre, near Euston station.
2nd June
Salisbury, the United Reform Church
9th June
Belfast
- Regional ABI Unit, Musgrove Park Hospital
8th September
Cornwall, Carlyon Bay Hotel, St Austell
6th October
Colwyn Bay, North Wales Brain Injury Unit
13th October
Dublin
20th October - Annual General Meeting York, Priory Centre
16th-19th November
Center Parcs weekend
Details will be sent to people in the immediate area, if you live outside the area of a meeting but would like to attend
please contact the office.
Center Parcs
Family Weekend Break - 16 – 19 November 2007
There are some changes from the original
thoughts about the weekend. The lack of a
central venue for our group at a reasonable
price has made organising general get togethers
difficult, so we are focussing on getting
teenagers / young adults together allowing the
rest of the family to do their own thing.
Accommodation is in 1, 2, 3 and 4 bed self
catering villas and is from Friday 3 pm to
Monday 10 am. The typical cost of a 3 bed
villa is £395 – there will be a 5% discount if you
book through the Society before 1 June plus a £50 discount for any young person between the ages of 13 and 24.
Families in receipt of Benefits may be able to apply for funding to cover all accommodation and travel costs from
one of the Charitable Trusts – ask for details.
There will be no charge for teenagers / Young Adults for any of the planned activities which will be supervised by
qualified care support workers. One large villa will act as “The Base” and all meals at the Base plus Sunday Lunch are
part of the Activity programme. Places are limited and accommodation will depend on individual family circumstances.
Please contact Elaine direct to discuss options. Direct Dial: 01653 604366 Email: elaine@encephalitis.info
Encephalitis Society Newsletter - No. 39 Spring 2007
11
cbit
Children’s Brain Injury Trust
www.cbituk.org
The Child Brain Injury Trust (Cbit) supports children, young people and families
affected by an acquired brain injury to enable them to achieve their potential.
The CBIT website has a series of fact-sheets about acquired brain injury in children and related topics available to
download.
They include:
Acquired Brain Injury in Children
Bullying
Referrals and second opinions
Education
Information for brothers and sisters
Social Services – ways it can provide support
Seizures
Financial support
Thinking, feeling and behaviour
Moving into adulthood
· Changes in behaviour
· Behaviour: practical strategies for home and school
· Feelings
· Thinking and learning
One-day workshops for staff in education
CBIT are holding a series of workshops called “Don’t judge a book by its cover. Supporting a child with an acquired
brain injury at school”.
2nd May
Oxford
18th July
Southampton
15th May
Edinburgh
17th September
Coventry
22nd May
Cardiff
25th September
Nottingham
5th June
Gravesend
2nd October
Swindon
13th June
Preston
9th October
Belfast
18th June
Birmingham
16th October
Liverpool
26th June
Cambridge
17th October
Manchester
3rd July
Milton Keyes
13th November
Worcester
10th July
Leicester
20th November
Newcastle
17th July
Exeter
21st November
Doncaster
Cost per person: £80 to include lunch, refreshments and delegate resource pack
For further information please contact Stephanie Flower on 01869 341 075 or Stephanie@cbituk.org
Easing Stress
Hannah Donne of Swansea Institute has been identifying ways of easing stress
often experienced by parents and carers. She has been working with Dr Ann
Edworthy, author of the book” Managing Stress for Carers” published by Cerebra
www.cerebra.org.uk
If as a parent or carer you would like to contact the Cerebra’s Stress Helpline,
please telephone 0800 043 9385, or e-mail ann.edworthy@sihe.ac.uk. For a free
copy of the stress management book, please order through their web site, email
info@cerebra.org.uk or the helpline on Freephone 0800 32 81 159.
The Disability Rights Commission are working in partnership with IPSEA – Independent Panel for Special
Education Advice – and have recruited workers to cover regional areas and work on Disability Discrimination/
Education cases. You can access a worker covering your area by contacting the Disability Rights Commission
Helpline on 08457 622 633 - There is also more information via the following link: http://www.drc-gb.org/education.aspx
or IPSEA website at: - http://www.ipsea.org.uk/
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Encephalitis Society Newsletter - No. 39 Spring 2007
Bits and Pieces
Acquired Brain Injury The Facts
This 62 page publication, produced by the Brain Injury Association of
Queensland Inc, 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 purchased copies to distribute in the UK and
Republic of Ireland. An initial copy of the book is available at no charge
to people affected by encephalitis living in the UK or Republic of Ireland.
Additional copies are £10. A postage charge of £2 is made for all copies.
An order form is enclosed with this newsletter.
LISTENING BOOKS
If you have any difficulty reading due to an illness or disability Listening Books could be for you. We support individuals
with a wide variety of print impairments. If you are unsure whether you qualify for membership, please phone our
Membership Services Assistants on 0207 234 0522 or e-mail membership@listening-books.org.uk.
For over a decade, Listening Books has offered its postal audiobook service on standard cassette tape for adults
and children. We are now expanding our service, and from January 2007 we will start to offer MP3 audio files on
CD, which can be listened to on a CD player, personal stereo or computer. The majority of books come on only one
CD, which means that a title can play constantly without having to stop for you to change discs. Another option now
available for children and young people is listening to audiobooks on their computer through internet streaming.
This gives our members constant access to the titles they would like to listen to and also removes the need to send
audiobooks back in the post. Internet streaming will be coming for adults in 2007.
Whether you read for pleasure or for learning, Listening Books has something for everyone. We support the National
Curriculum from Key Stage 2 to A-Level, providing set texts to support the study of English and English Literature
as well as revision guides, a huge range of general fiction and books that support other subject areas such as R.E.,
History, Citizenship, Science and Art.
New cash guide for people with learning disabilities
A new banking guide designed for people with learning disabilities has been published. Free copies of the booklet
can be obtained by calling the Barclays Information Line on 0800 400 100.
11 Million Eligible for Legion Support
Did you know around 11 million people- that’s 1 in 6 of the population- are eligible to apply for help from The Royal
British Legion? They are the country’s leading charity serving the current and former members of the UK armed
forces, providing a range of financial, social and emotional support. The Legion works nationally through the
500,000 members who meet at the network of branches and clubs. Their volunteer Caseworkers help people with
a wide variety of needs from the basic to the complicated; including food, clothing rent and housing adaptations to
respite breaks, electric scooters and debt relief. Funds are raised from the Poppy Appeal and help is always needed
collecting donations for the Poppies during the two weeks prior to Remembrance Sunday. For further details please
call Adrienne Wakeling on 01284 7225833 or email: awakeling@britishlegion.org.uk
http://www.kidzaware.co.uk
Is an online version of a new programme, ‘Count Me In’, developed by the Yorkshire-based special abilities, a support
group for the parents or carers of children with a chronic illness or a disability. The Count Me In programme is aimed at
educating all children—whether able-bodied or disabled, and from as young as two to as old as 18—about the issues
affecting children with a disability. Count Me In tries to help ensure that children with a disability are not excluded
from life’s activities simply because people lack understanding of their conditions. Count Me In was developed in the
United States, where it been accessed by half a million children. Now available in the UK, it is being initially promoted
to schools and children’s groups in Yorkshire. Manuals and other resources are downloadable at the website.
Further information is available from: Kidz Aware, Jubilee Hall Community Centre, 5 Townley Road, Wakefield,
WF2 8NS, UK. Telephone 01924-385-977
Encephalitis Society Newsletter - No. 39 Spring 2007
13
Published articles and books
The British Journal of Neuroscience Nursing
The British Journal of Neuroscience Nursing published an article in their
December 2006 edition written by the Encephalitis Society. The article entitled
“Encephalitis, a service orphan: The need for more research and access to
neuropsychology” explains that encephalitis and its consequences are often
misunderstood, not only by the general public, but also by those providing
health, education and social care. The aim of the paper is to provide a brief
overview of the epidemiology and clinical consequences of encephalitis, and
highlight the potential of approaches such as neuropsychology in its treatment,
with the intention of helping health professionals improve the quality of care
received by patients. In the article it is argued that rehabilitation of people
affected by encephalitis may benefit from interdisciplinary and biopsychosocial
approaches, and that neuropsychology assessment can be a useful tool in
recovery.
Copies are available from the Society and can also be downloaded from the
web site www.encephalitis.info
Neuropsychological Rehabilitation
There will be a special edition of “Neuropsychological Rehabilitation” in November 2007
devoted to Encephalitis. Many of the articles have been written by professionals associated
with the Society, including Steve Pewter and Lucy Hooper. Steve Pewter interviewed
Society members for his research “Neuropsychological impairment profiles and psychosocial
outcomes in acute encephalitis in adults”. Lucy Hooper interviewed Society parents for
her research to investigate stress, coping and parenting styles of Carers of children postencephalitis. Ava Easton, Development Manager of the Society, has also contributed to the
edition.
Neuropsychological Rehabilitation is published by Psychology Press part of the Taylor and
Francis Group, details at www.psypress.com/neurorehab Copies of the edition will be made
available from the Encephalitis Society at a discounted price.
Future Recall
Future Recall is an article which appeared in the New Scientist on 24 March
2007. Written by Jessica Marshall, a freelance science writer, the article explores
research into memories of the past and visualisation of the future. Researchers
have discovered that the brain areas that are active when you recall your personal
past or think about the future are almost identical.
“K.C. has a specific problem with his episodic memory: he knows plenty of facts
but is unable to remember anything about his personal past. Researchers noticed
in passing that something else was wrong. “He could not think about his personal
future,” says neuroscientist Endel Tulving of the University of Toronto in Canada,
who studied K.C. for more than 20 years.
Other researchers soon began to stumble across links between memory and future
thought. Another patient, D.B., whose episodic memory was wiped out after a heart
attack starved his brain of oxygen, had
similar problems to K.C. He knew where
he worked and what sort of company it
was, but he could not remember a single
occasion of having been at work. Likewise, he could understand abstract
concepts about the future - that global warming would be a significant
problem, for example - but he could not imagine anything about his personal
future”.
Copies of the complete article can be requested from the Encephalitis
Society.
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Encephalitis Society Newsletter - No. 39 Spring 2007
Brick and Mortar Campaign
The Bricks and Mortar Campaign began last year with the aim of encouraging people, if they were able, to take out
standing orders for monthly donations to the Society. This regular income would mean that the Society was less
reliant on short term grants – in the last financial year (2005/6) 68% of our income was from grants. This imbalance
has begun to be addressed thanks to the Bricks and Mortar Campaign which is currently bringing in over £14,000
a year.
Each standing order is like a brick in the building of the structure that houses our Society – and one wall of 100
bricks is now complete. Over the next 10 years we hope to complete 4 walls and a roof providing the Society with a
sustainable income of over £60,000. £60,000 is the cost each year of providing the Support Service – ensuring that
the people who deal with your enquiries remain skilled, experienced and able to respond to your need for information,
advice and support. We have lots of ideas to do more – especially in raising awareness and encouraging research
– but this will always be in addition to our core support work.
Below are our first 2 walls with the names of supporters. If you want to join them, complete the Bricks and Mortar
form with this newsletter – and watch our home grow.
Although 10 times as many people are affected by a neurological condition than cancer, the resources available for
cancer research and health and social care are 10 times those available for neurological disease. The Encephalitis
Society through it’s membership of national organisation such as the Neurological Alliance and UKABIF (United
Kingdom Acquired Brain Injury Forum) is striving to change this situation. Please support us. We will report on
your response in the newsletters including updates of the names on sponsored bricks.
Encephalitis Society Newsletter - No. 39 Spring 2007
15
Back Page
Encephalitis - an Information DVD.
The Information DVD has been a number of years in the making. A pilot was produced
two years ago which demonstrated the potential of such a resource and also the
importance of working with a company that could ensure a quality product. We found
that assurance in Moving Media Marketing Ltd based then in Leeds, now in York. Not
only did they have the expertise but they were keen to work with a charity. A very
successful partnership has developed. In addition to the DVD Moving Media have also
been involved with the production of the Parent Handbook and the children’s storybook
Gilley the Giraffe …who changed.
The DVD has been produced in user friendly language; information is interspersed with interviews featuring members
of the Society. It has easily navigable sections that explain what encephalitis is, how it is diagnosed and treated,
how to deal with the problems and difficulties that follow, and what information and support the Society can provide.
You will find that the DVD is not only a useful tool for those of you affected, your families and friends, but also for the
health, social care and education professionals who are working with you.
Martin Kemp and Society Volunteers
Encephalitis Society staff and Encephalitis Ireland with
Martin Kemp.
Mathew Bose and Emmerdale cast with Society staff
and members
Edna Davies and Valerie Crooks with cast members of
Emmerdale
Head Office 7B Saville Street, Malton,
North Yorks, YO17 7LL
Telephone
01 653 699 599 (Support line)
01 653 692 583 (Admin )
Fax
01 653 604 369
E.mail:
mail@encephalitis.info
Web site:
www.encephalitis.info
WHAT DO YOU DO WITH YOUR NEWSLETTER
WHEN YOU’VE FINISHED WITH IT?
The Encephalitis Society is a charitable Company Limited by Guarantee,
registered in England and Wales No: 4189027. Registered Office as
above. Registered Charity No: 1087843.
16
Please don’t bin it! It’s a useful tool in the campaign to
increase awareness of encephalitis - so take it to your
doctor’s surgery, local dentist or hospital waiting room
and leave it for others to read.
Contributions to the newsletter are welcome and can
be sent in any time.
Encephalitis Society Newsletter - No. 39 Spring 2007
The Encephalitis Society does not necessarily share all the views and opinions expressed in the newsletter
A first copy will be given free of charge to people affected by encephalitis, additional copies are £10 and an order
form is included with this newsletter.