Summer 2009 - Encephalitis Society

NEWSLETTER
No46 Summer 2009
In This Issue
2
A Big Welcome and a Sad
Farewell
3
ES Challenge Update
6
Trek Transylvania
7
Bricks and Mortar
Campaign
8
Meet the Regional
Representative Volunteers!
10 Your Stories
12 Meetings
14 Bits and Pieces
15 Information Update
16 Contact a Family
20 Gilley Animation Project
The Encephalitis Society
action for support, awareness, and research
A warm WELCOME to our newest
members of the team!
Congratulations to the six members of the Encephalitis Society who responded to
our challenge and became our first Regional Representative Accredited Volunteers.
The six went through a selection process and intense training delivered by the
Society and accredited by the Open College Network. They will be regional contacts
for people affected by encephalitis, their families and carers. They will also be a
resource of local information and local organisations that will provide additional
information and advice to that specifically provided by the Encephalitis Society
(please see pages 8 and 9 with more information about them and the areas they cover)
We would like to thank all our members who contributed to our recruitment process,
taking time to read and fill in our application form. We acknowledge the high level of
competence, experience and huge desire among all applicants and hope that this first
group of Regional Representatives will soon be extended. Certainly the first year of the
project has been highly regarded not only by us but also by the volunteers themselves.
They found that the opportunity to meet together during the three-day course in Malton,
exchanging their moving and powerful experiences, learning more about Encephalitis,
developing volunteering skills and meeting staff at the Society all contributed to their
psychological wellbeing as well as their level of knowledge. Their recognition of the
high level of professionalism of the training and their general positive feedback at
the end of the course, (even if they were exhausted!) is much appreciated by us. We
praise their energy, enthusiasm and commitment and look forward to our continued
partnership.
A Big Welcome and a Sad Farewell
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Our wonderful Patron, Martin Kemp is standing down as a result of
work and family pressures. You will all know Martin lost both parents
within hours of each other earlier this year. At the same time the
reformation of Spandau Ballet was at a stage of no return despite these
tragic circumstances. Those of you who have an eye on the media will
know that the return of Spandau Ballet has resulted in unprecedented
attention and extraordinary interest from old and new fans alike. As
a result Martin has had to bid a fond farewell to some of his other
interests.
Martin writes
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…..I have gained a lot from my involvement and our friendship. I can
only wish you, Barbara, Mathew and everyone involved all my love and
the best of the luck in carrying on the fantastic job you do for thousands
of people around the world. I hope the charity has benefited from my
involvement…”
We are sad to see our Patron move on however I have to say we have
benefited enormously from his presence and the charity and I personally
learnt so much about the media and VIP supporters from Martin. Martin
is one of the nicest, most caring people I have ever met and so I am
honoured and proud we secured his patronage and I know you will all
join with me in thanking him.
Martin Kemp
Martin has however requested to stay on as friend and supporter of the society and I hope we will see him
again in the future when his world is a little quieter.
Of course, we all know that many clouds have silver linings and just before Martin’s decision, we had the great
news that Double Olympic gold-medal winning swimmer Rebecca Adlington, had accepted an invitation to
join Mathew Bose and become our latest Ambassador.
Rebecca’s sister Laura was seriously ill in 2005 with
Encephalitis. Laura made a good recovery, however the
experience and its effect upon the family has stayed with
Rebecca. Following Rebecca’s success at the Beijing
Olympics and her subsequent rise in popularity, Rebecca was
determined to make charitable work part of her agenda
Rebecca says:
“Having seen at first hand how the illness affected my sister
Laura and how little we knew about it at the time, my hope
is to work with the team in order to raise awareness of the
illness to help sufferers and their families. I’m pleased that
my success in the swimming pool will enable me to increase
the understanding of the disease and make sure that other
families don’t have to go through the experience we had.”
Rebecca Adlington
So we say a Fond Farewell to Martin and wish him all the
luck in the world and we say a big welcome to Rebecca,
and hope that many of you will get to meet Rebecca at
future events.
Ava Easton, Development Manager
ES Challenge Update
15 years on the Encephalitis Society is as strongly committed as ever to supporting people directly and
indirectly affected by encephalitis.
To celebrate the work of the society in it’s 15th year Ava set myself (Tamar) & Jon a challenge:
To encourage members, their friends and family to take part in events during our 15th anniversary year.
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The purpose of each event is to celebrate all the fantastic work to date, including the launch of the adult and parent
handbook and the information DVD, increase awareness worldwide and to help raise a much needed £150,000.
Many of you will be aware that most of the money we would normally have been able to access from the Big Lottery
and other grant making trusts has been reduced and indeed affected by the recession - this means we’ve had to think
about new ways of raising income to enable us to continue and develop the work we do.
3
You’ll be pleased to hear that the challenge is going great! We have received an overwhelming response from our
members, their family and friends in support of the Society in it’s 15th birthday year celebrations. The support is
so encouraging - it is really lovely to see everybody coming together to support us - words cannot express our
gratitude. So far we’ve had people sign up to events such as walking, running, skydiving, sponsored silences and
swims! We have also received donations in lieu of Birthday presents, Wedding gifts and Wedding Anniversaries.
Later this year, there will be an ES Challenge Special Edition Newsletter, with write-ups and photographs of all the
events. But for now here’s a sneak preview of what the other members have been up to. Hope you like it!
Here’s what happened when Charlie Stanley Evans and Justin Wateridge
took part in this event…
06.40am
–
Boat and emergency kit pass
inspection, Charlie realises he’s lost
his hotel room key.
07.40am
–
We start. Charlie without his
kayaking boots and wet weather
gear – both locked in hotel room.
12.00pm
–
First two major obstacles completed – The Bruce Tunnel: 400 metres of
pitch black; Crofton Flight: 1 mile
run carrying kayak past 7 locks.
3.00pm
– Reach Newbury. 34.5 miles. 1½
hours behind schedule. This our longest distance in training. Pain
beginning to bite and 90 miles to go.
3.30pm
–
Charlie finds hotel key in left leg of Neoprene trousers.
6.00pm
–
Temperature quickly drops and starting to rain. First bouts of Nausea set in.
7.30pm
–
Reach Reading. In the centre of Reading 3 drunks shout – “Where are you going?”, we tell them.
They reply – “don’t take the fu...in pi.s”
8.00pm
–
Its dark and still raining. 2 hours behind schedule. Starting to feel proper pain in shoulders and
wrists. Not half-way.
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4
12.00am
–
Marlow. Justin gulping strong coffee at every lock to keep him awake. Charlie, sitting in front,
doesn’t know if its working.
01.30am
–
Drizzling, very dark, cold, feeling very low. Feeling very sick. Still 55 miles to go.
02.30am
–
Running a real risk of not catching the tide – need to go faster but struggling to find the energy.
03.30am
–
We pass Windsor Weir – the most dangerous stretch of water on the course.
05.30am
– Shepperton. First light. 30 miles to go. Charlie complains of furious pain in shoulders, arms and
wrists. Justin keeps quiet. Need to go faster.
07.00am
– Not sure we’re going to make the tide, got to go faster.
08.15am
– Arrive at Teddington, the Tideway, with 20 minutes to spare. No need to wait 12 hours for next tide
window.
08.30am
– Catching the tide late in its flow means we have to paddle hard, much harder than we’d prepared our
minds for. 3 more hours of hell.
9.30am
– Despite painkiller overdose Charlie complains
everything hurts. Justin keeps quiet.
10.30am
11.46am
– Putney Bridge. See family. Spirits lift. We’re almost
there. 7 miles to go.
– Big Ben strikes the quarter hour and we finish.
Charlie (very emotional) and Justin (hiding his
emotions) are carried from the boat.
28 hours 6 minutes; 106th position; 180 started; 135 finished. We’re very pleased.
We would never have finished the race, indeed, probably not have started, if we hadn’t had support.
Charlie and Rachel Allen, John and Sarah Biddulph, Elizabeth and Angela Pooley, Alexander Pooley and
Ruth Ford where all invaluable. They fed and watered us, bandaged and drugged us and gave us great
encouragement throughout the day and night. Biggest thanks though go to our wives Etty and Rachel, for
putting up with our night and weekend training, their immaculate planning of the support strategy and for
being at almost every lock from midnight until the finish. Without their strength we would not have caught
the tide and therefore would not have finished.
WOW!
Here’s another one….
My experience of hosting a 15th Birthday Challenge by Natalie Mckenzie
Friday 14th November 2008 I held my 15th birthday fundraising
party challenge for the Encephalitis Society. My idea was to host
a Jewellery Party. Beforehand I had tried to be very organised and
spent time drawing up a guest list and then a table to keep check
on who I had invited, who had replied and how many were coming. A week before I drew up a list of everything I needed to do and split it
between several days before, the day before and the day of the event. I had this list in two places and checked everything off when it was
done. This way I remembered everything (well almost) which was a
big achievement for me! I also made sure I did nothing extra the day
before the event, on the day itself or the couple of days afterwards.
JemJem Jewellery arrived on time and proceeded to lay out the wonderful selection of jewellery that they had
made. The range of colours meant there was something for everything and with prices between about £15 and
£65 almost everyone found something that they actually wanted to buy at a price they could afford. JemJem
altered necklaces to fit there and then. They even made up some pieces from scratch so there were no fights
between guests over particular pieces. I got my mother’s Christmas present and a little “well done to me”
present for coping with having the event!
We also held a raffle and sold drinks. We were very fortunate as the wine was donated by my mother and a
number of friends donated prizes to the raffle. Thanks should also go to Boots and Tesco for holding 3 for 2
promotions and BOGOF offers. By simply buying items that we would have bought anyway for ourselves or
Christmas presents in threes meant we got several raffle prizes for nothing! We always buy toiletries in the
sales for emergency presents during the course of the year. This year we hadn’t used them which meant we
had Crabtree and Evelyn goodies to add to the pile of prizes. Harrods may be the most expensive shop but it
does have jolly good sales particularly in the New Year when it shifts unsold Christmas present stock. I mean
at the end of the sale you can be getting 75%+ off. I think we ended up with 9 prizes!
I invited our MP’s wife, unfortunately she wasn’t able to come but I had a phone call from the MP’s secretary at the
House of Commons. He apologised that neither of them could come. However I was asked to contact him afterwards
to let him know how the event went and if I were to hold another one please would I invite them again as this sort of
fundraising was just the sort of thing he likes to encourage and support! We raised nearly £300 and I do hope readers will support the Society by holding their own challenge event. It
needn’t be a big thing. For those of you that I’ve inspired, here are my top tips!
•
If you think you may be holding an event with a raffle make the most of 3 for 2; buy one get one free deals
or go to the end of the sales for non-perishable items.
•
Keep a list of replies in a handy place so that you can tick them off when you receive them.
•
Work out what you will need to have and to do to be ready at least a week before hand so you can take
your time to get ready.
•
Remember someone is bound to turn up early and before you are ready (or in our case 3 people did).
•
Get a big float from the bank. Split it in two and keep half back in case you run out of change during the
evening. Make sure you remember how big the float was and take it out of the total money at the end.
•
Hand the camera over to someone who is attending but not running the event - definitely do not leave it to
the person who has had encephalitis!
Natalie Mackenzie
I hope you like what you’ve read……. we think it’s fantastic. It personally, gives me so much inspiration. All of us on the team
are looking forward to doing our events. If you or any of your friends or family would like to help raise awareness and funds then
please get in touch now! We have Fundraising packs ready and waiting and we will give you as much support as you need.
We did not anticipate this amazing response, and ideally, we would have liked to have been able to invite everyone who
has taken part to our birthday bash later this year. Unfortunately because of the response we can only offer limited
places to attend - we will be offering the event organiser plus a guest a ticket to attend the party in London. However,
should tickets become available after allocation, we will ensure all those who have supported us will get first chance at
any remaining tickets.
Thanks again for all your support
Tamar & Jon, Challenge Co-ordinators
5
I did make a mistake on the night - remembering to take any photos. You’d think by now I’d have realised I’m not
necessarily the best person to remember to do something. As a result we don’t have any photos which I am quite upset
about. The only other thing was I think we could have pushed the raffle tickets more.
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Page
Obviously we invited people whom we knew well. My biggest surprise was that so many people who could not come
wanted to make a donation. It had not occurred to me that this would be the case.
TREK TRANSYLVANIA
Enclosed with this newsletter is a Trek Transylvania Poster.
We need as many of you as possible to sign up for the Trek
to raise much needed funds for us!
Page
In addition you will benefit from getting fit, losing weight
and toning up! Not only that but you’ll have a fab time,
experiences of a lifetime, boost your confidence in a safe
environment and you’ll meet a great bunch of us all!
6
If you can’t sign up or it’s just not your thing then please take
the poster and display it in your place of work, education,
local library, local shop etc etc.
Alexandra Rose Day
This year we are once again joining in with the Alexandra Rose Day raffle. This is a national
charity itself, founded in 1912,supporting other “people-caring” charities and voluntary
groups in raising funds for their own purposes. Alexandra Rose Day handles all the
administration of the raffle for all the participating charities, which helps us enormously.
To reduce waste we have not included raffle tickets with this newsletter. If you would like
tickets please could you call the office on 01653 692583 and we will send you as many books as would like. The
tickets are 50p per ticket and there are 5 tickets in a book. The first prize is £2,000, the second is £1,000 and the
third £500. For every £10 worth of tickets sold, the Society receives £8. The balance contributes to the prizes and
overall costs of the Alexandra Rose Day. Last year we earned £800 from the sale of tickets.
Foreign/Holiday Coin Appeal
Have you been on holiday abroad and haven’t spent all your foreign money? Do
you have any foreign coins or notes to spare? If you do, you could donate them
to us and we can exchange them for UK money!
Please pack the unwanted coins/notes up safely and send them to our office
using the following FREEPOST address and we will do the rest! RRKZ-RTZCEXYY FREEPOST The Encephalitis Society, 7B Saville Street, Malton YO17
7LL.
Calling all Bristol based Members
One of our members is organising a Family Fun Day on August Bank Holiday Monday (31st August) with the
proceeds going to the Encephalitis Society. She would love it if you
would turn up and enjoy the day. There will be a disco, a live band,
stalls, bouncy castles, face painting, raffles, a Hog Roast and of course,
a Bar!
The venue is “The Ring O’Bells” pub at Coalpit Heath, Henfield Road,
Bristol BS36 2TG. Everything starts at 2pm!
There will be a small charge on the gate – all proceeds to the Encephalitis
Society.
Bricks and Mortar Campaign
Three years ago we launched the Bricks and Mortar Campaign to create what is known as ‘sustainable income’.
This is income from a continuing source, unlike grants, which we may or may not be successful at securing. The
Bricks and Mortar Campaign aims to encourage people, if they are able, to take out standing orders for monthly
donations to the Society. The Bricks and Mortar Campaign is currently bringing in nearly £25,000 a year.
Ian
Dowell
Anon
Anon
Mr and
Mrs Dyke
Paul
Dyble
Ava
Easton
Judy
Egdell
Darren
Egdell
Carolyn
Francis Ewens
Tony
Eves
Susan
Fitzgerald
Barry
Fraser
Chrissana
Gibbs
J and M
Cathy
Ada Franca
Paul
Anne
Leanne
Steve
Brigid
Grant
Grant
Harwood
Gulson
Harper
Hanney
Greenhalgh
Griffin
June
and
Roy
Maureen
Debbie
Gerald
Lisa
Linda
Mark
Hazel
Margaret
Harry
Hussey Jackson-Kemp Jones
Hewitson
Harwood
Haynes
Humphreys
Hicks
Hersee
Hinks
Eileen
Steven
Susan
Gordon
George
A and D
Dave
Joke
Terry
Mark
Lawson
Lee
Lees
Kitchington Mercer
Laurenson Lawrenson
Kuipers
King
Kurland
G and I
Christine
Paul
Steve
Patsy
RH
Natalie
Martin
Maggie
Alison
Middleton
Mitchell
McMohan McMohan
MacKenzie MacLeod
McGinley McGrath
McLearnon McLeish
Rachel
Gavin
Maureen
Molloy
Gerard
Morris
Ita
Murray
J and S
Palmer
Peter
Pas
Lynne
Patience
Kym
Pattison
Vincent
Paver
Amy
Phillips
Michael
Porter
Lorraine
Mary
Derek
Olivia
Scarlett
M.
Elaine
Nicholas
Maggie
Steven
Pratt
Preddy
Price
Randall
Randall
Redmond
Reyland
Rich
Rich
Rich
Mairead
Brian
Julie
Marion
Chris
Catherine
Carol
Mr and
Dr David
Kathy
Sands
Rooke
Roderick
Salter
Scott
Seddon Shakespeare Silverson
Mrs Ross
Ryecroft
Thomas
Skinner
Eric
Smith
LA
Smith
Stephen
Smith
Jonathan
Southwood
Jeanette
Stacey
Iris
Staples
Margaret
Stretch
Ron
Sugden
Sue
Syvret
Jane
Neil
Gail
Norman
Brian
Ron
Ian
Roderick
Gwendoline Rachel
Tarleton
Talbot
Tempest
Thomas
Thompson
Trickett
Tuhill
Tweddle Tyndale-Biscoe
Tarleton
Gillian
Dan
Prof. Huw
Anthony
Kathlyn
Charlie
Veronica
Jennifer Dr Steven
G
Wilcox
Williams
Wiliams
Wallinger
Wayland
Warman
White
Waites
Welham
Wilcock
Prof Barbara
Wilson OBE
David
Winters
Susan
Wiseman
Brian
Wood
Paul
Woolfries
Jacqueline
Wynne
Howard
Young
Here are our first 2 walls with the names of supporters. If you want to join them ask for a Bricks and Mortar form by
phoning 01653 692583.
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Cath
Fionna
Joy
Isabella
Barry
Gillian
Jane
Agnew
Balfour
Adams
Bardswell
Appleyard AtkinsonAbnett
Kathryn
Peter
Heather
Richard
Laura
Patricia
Richard
Margaret
Margaret
Kathleen
Brady
Bradshaw
Bladon
Birtwistle
Boston
Blenkinsop
Beaumont
Barrow
Barrow
Bentley
Paul A.
Robert
Rachel
Mandy
Janice
Jean
Elizabeth
Thomas
June
Nimmi
Brown
Coe
Burley
Bullen
Brooksbank
Brown
Brett
Clarke
Chambers
Channa
Ron
Keith
Pamela
Harry
Gwen
Audrey
John
Ben
Jude
Richard
Cust
Colburn Constable
Creswell
Crosby
Cross
Cooper
Cooper
Creed
Cooper
Josephine
Keith
Elaine
Philip
Dr Nick
J and K
Andrew Jacqueline
John
Colin
Mary Daker
Dowell
Dowell
Dewhurst
Davies
Dean
Davis
Dalton
Day
Dellar
Anon
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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 remains 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. Families were offered
discounted accommodation and skilled child care was provided by Ryedale Special Families, an organisation local
to the office which is always used for our events with children. Activities included a “puzzles” evening, visit to the
National Railway Museum, the Jorvik Centre and a meal at Pizza Hut.
Meet the Regional Representative
Volunteers!
Ronan Crinion Regional Representative for Ireland
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“Even for those of us, who sometimes forget from time to time, the
Encephalitis Volunteer weekend in Malton will never leave our minds! It was
a wonderful weekend that was so well planned and prepared for. We were
greeted by Ava and Alina on our arrival and they extended every courtesy
to each one of us, over the busy four day conference. The attention to
every detail must be commended and the management of our time there
was outstanding.
8
We had to complete some research and analyse some literature on Encephalitis
before our arrival for the conference, which gave us a flavour of the amount of work
expected. Even on our departure, we were given more books to complete and
analyse within a given time! We also had to give a five minute presentation on an
Encephalitis relevant subject or theme that we had to each prepare separately and
deliver to all the other delegates on the Sunday morning. At that stage of the conference we had all become so much
closer, so the support and camaraderie during each presentation, was in abundance.
It was simply a brilliant weekend and the most important aspect was that we were trained to listen and
offer support, not advice, and point people in the appropriate directions they need to go. I learnt a lot
more medically about Encephalitis during my time there and the fact that I can now liaise with a fantastic
support group in Malton, gives Irish survivors and their families an opportunity to meet a link, in person,
to pass on the important information and support they so deserve”.
Karan Davis Regional Representative for Scotland
“I’m one of the Regional Reps for Scotland. My name is Karan Davis. My
son suffered from encephalitis in October 2003.
I work as nurse in Public Health and wanted to become a rep for the society
to give something back for the support we have received as a family since
Kal’s illness”.
Paul Woolfries Regional Representative for Scotland
“Hi, my name is Paul, and I’m 37 years old and live in East Kilbride, Glasgow
with my fiancée Elaine and her 6 year old daughter Kirsten. When I applied
to be a volunteer for the Society I was delighted to be accepted. I recently
attended the volunteer training course, which gave me much more insight
to Encephalitis, and I hope with this and my personal experiences I will be
able to help sufferers and families and also provide more information and
awareness of Encephalitis.
I contracted Herpes Simplex Encephalitis 5 years ago and with the support
from my mum and sister, and the excellent help from the Encephalitis Society
I count myself very lucky to have made such a good recovery.
My progress has been very positive and I enjoy a new outlook in life and new
growing enthusiasm for many things including music, which has a huge influence
in my life, although some people my say my taste is a bit scary :-)”
Ada Harwood Regional Representative for Oxfordshire,
West Berkshire, Bucks and Gloucestershire areas.
“My husband, Gerald Harwood, a Flight Sergeant in the RAF with over 30
years of service was diagnosed with Voltage Gated Potassium Channel
Limbic Encephalitis 9 months ago, after first falling ill whilst on detachment
in Cyprus in 2007.
“I welcome the opportunity to work as a volunteer for the Encephalitis Society.
I look forward to being able to support others, confident that I will be supported
by the society, given the advice and information needed... and kept an eye on! I had encephalitis nearly four years ago. Joining the Encephalitis Society
was an enormous help to me and to my family. Looking back, there was so
much we didn’t know. The very first Encephalitis Society meeting I went to
made a profound difference. It was wonderful to meet other people who knew
about encephalitis, could share their thoughts, feelings and experiences, and
provide important information. My family reported uplift in my mood from that
moment on. Before having encephalitis, I much enjoyed my work as a teacher, psychologist and manager of education
support services. Now fully retired (thanks to encephalitis!), I can be with my children and grandchildren
more, which I love. Coming to terms with my illness and living with an acquired brain injury has been
hard, but I find I now welcome the new me and life is really worth living. I greatly look forward to working
with the Society as a volunteer”
Rachel Tarlton Regional Representative for Birmingham, Stoke on Trent, Herefordshire, South Shropshire,
Shrewsbury, Chester, Wrexham and Newtown
“My name is Rachel Tarlton and I am extremely pleased to be joining
the Encephalitis Society as a Volunteer Regional Representative. I had
encephalitis in Sept. 2004 and after a long stay in hospital returned home
in May 2005 to my 3 year old son. I was fortunate to receive excellent care
both in hospital and subsequently with a rehabilitation programme at home. During my illness and on-going problems I received tremendous support
from family, friends and professionals - all of whom were supported by the
wonderful people at the Encephalitis Society. It is only now that I realise
what a key role the Society played in my recovery.
Now that I am feeling so much stronger and more able I am determined to do
all I can to support the Society and people who are affected by Encephalitis. I learned so much from Ava and Alina and to meet the other volunteers was
inspiring. It was a great experience to be in Malton to see how the Society
operates and be part of the organisation. There is so much I want to achieve
to help others and I am really looking forward to this volunteer role.”
9
Chris Salter Regional Representative for central London area
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Our family was able to successfully survive the painful, uncertain journey and
challenge its darkest times because of the support shown by the Encephalitis
Society. When I saw the advertisement about the Regional Representative, I
thought it would be my opportunity to give back some of the support I received
and help other Encephalitis sufferers, their families and carers through what I
feel is one of the most enduring and testing times in my life so far”.
Your Stories
Ben’s Story
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Ben was an extremely healthy and fit 11 year old when he contracted viral encephalitis in July 2004. It
started within 24 hours of our arrival on a three week holiday in Australia. His initial symptoms were
violent headaches and acute vomiting. We called a doctor but before he had arrived, Ben had become
confused and was in terrible pain and we had rung for an ambulance. The ambulance men were concerned
when Ben was unable to remember his name or where he was. He was admitted to a private hospital in
Brisbane and within 15 minutes of his arrival, had a spinal tap, which showed an abnormally high white
blood count and protein levels. The doctor suspected meningitis and immediately gave him Acyclovir by
drip – we believe this prompt action probably saved his life.
10
He was transferred to a ward at Brisbane Children’s Hospital later that day, under the care of the wonderful
Professor Pearn, Head of Paediatrics. Unfortunately the following day the acute head pain returned with
a vengeance and he was once again moved to the emergency department where he was given injections
of morphine and other painkillers all of which his body rejected by being violently sick. He had an EEG,
which showed abnormal and erratic brain patterns followed by a brain scan and he was then given a
general anaesthetic and had an MRI scan. He was treated jointly by the Head of Neurology, Head of
Emergency Services and Professor Pearn who were all baffled by his condition although they knew it was
a strain of viral encephalitis, possibly Japanese. The next week was a roller coaster of Ben seeming to
make some recovery and the slipping back. However after two weeks he was discharged from hospital
and although weak continued his holiday.
On arriving safely back home he slowly recovered and gained strength back. We were grateful for the
support of the Encephalitis Society in the form of advice and help with behavioural and memory problems.
He currently plays tennis at good club level for about ten hours a week and will be taking some GCSE’s
next year. He occasionally feels lightheaded, struggles to concentrate in class and his short term memory
is not brilliant BUT we know how lucky we are to have regained our very special son.
Written by Jane (Ben’s Mum)
Maria’s Story
I hope by writing my story, it may help other people who have themselves
experienced encephalitis, a similar life threatening condition or help them
support a family member or loved one.
It’ll be seven years in March since I was admitted to hospital by ambulance. I’d
gone to bed feeling unwell with flu like symptoms. I was later found unconscious
and deteriorated rapidly, going into a coma and developing respiratory failure.
I was admitted to Intensive Therapy Unit (ITU). I was on a life support machine
and was fitted with a tracheotomy to allow me to breathe. Doctor’s didn’t know
what was wrong with me. There had been a number of problems about the
diagnosis. I had lumbar punctures and MRI scans, I remained in a coma for 2
months. It wasn’t known if I’d survive.
When I woke I was very lost, confused and disorientated in my surroundings.
I slipped in and out of consciousness. I was hallucinating. There was no
movement. I was terrified and wanted to scream. I couldn’t even open my
mouth. I was lying there trapped in my own body, my mind spiralling. I was paralysed from head to toe.
This was the worst time of my life. I felt it was a massive battle to survive. Unable to communicate, feeling very
emotional and mentally unable to cope with the situation, terrified I’d remain in the same state. For the weeks that
followed I only had my thoughts to occupy me. I desperately tried to alert people that I was awake.
I’d follow them with my eyes. As time passed, I learned to blink once for yes and twice for no. It was amazing to be
able to communicate after so long. My progress continued, 2 fingers on my left hand moved. I was transferred to the
High Dependency Unit and Ward 40.There was damage to my nerve cells and my muscles had deteriorated. I was
started on a 6 week anti-biotic treatment. I was told there was a presentation of Listeria in the brain stem. I became
very depressed and was on the verge of tears every time anyone spoke to me.
As I improved I was transferred to Maidencraig Rehabilitation Unit. This is where I learned about my diagnosis.
I was getting physiotherapy and hydrotherapy. I continued to make small gains, small though they were
and work on my legs to try and straighten them. I found the therapy sessions valuable and beneficial.
Eventually I could move my upper limbs and I wanted to continue and do more for myself. I wanted to
know how far I could improve.
In October my hopes of having a free life were knocked back. I was told that I wouldn’t be expected to
walk again or even stand unaided in the near future. I was devastated at this news. I felt I couldn’t cope
anymore and wanted to give up. With the support and persuasion of my family and realising how I had
improved so far, I became more determined to improve further. I just kept it up and persevered with will
and hope. I thought of my family and continued to make small gains. I made it a long-term goal to be able
to stand. To help with my development I got the use of a standing frame. I needed to use this every day
to prevent stiffening and to practice sitting, standing and my balance. I learned how to do car transfers
on my occupational therapy sessions. When I managed this I could go home at weekends in the car and
gradually managed an overnight stay. At home a bed had to be organised for me in the living room because
my bedroom was upstairs. I was told a couple of weeks before that I might get home for Christmas. I was
discharged on the 13th December. As one doctor said to me “This was going to be a marathon not a sprint!”
My rehabilitation continued at home and I needed a carer to help me wash and dress. I got the standing
frame home with me temporarily to try and sit to stand and persevered with this. As time went on I made a
great deal of progress. The physiotherapist came in one day with a Zimmer frame. I took a couple of steps
at first until I was getting more confident and this gave me a bit more freedom. I then went on to a tripod,
a 3-wheeled frame. I managed to get about the house a lot more. This led to short walks and I was able
to go out and about using at first two then just one walking stick.
It was hard but I came through it and proved the doctors wrong, relearning how to do everything. I’ve
regained the use of my limbs and can now walk unaided. I continued to exercise daily and gradually built
up my muscles. The illness has left me blind in my right eye but I’ve got my life back. Going through
something like this teaches you what really is important in your life. Whether you are happy or sad, make
the best of it. Live life to the full! I am eternally grateful to all the caring people who have helped me so
much through my illness.
I attend Momentum (http://www.momentumscotland.org/web/Home) twice weekly and this has made me feel I
have a more positive outlook to my future.
Maria
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The illness had eroded my confidence and I was finding it hard to deal with the situation. I thought I’d
never get home again and that I’d be hospitalised forever. I was down when family and visitors went away
and I wished I could go home with them but that was impossible.
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I had no function in my lower limbs and weakness in my upper limbs. My mental state got slightly better
when the tracheotomy tube was removed. I was now able to talk to my family. I was hoisted out of bed
into the wheelchair and taken to the physiotherapy department. I had no control of my body and needed
support, my balance was very poor. I was extremely disabled. As time went on I was put on the tilt table
and put on the waiting list to continue my rehabilitation therapy at Maidencraig.
Recollections of a Trustee
There is much to learn as a trustee. Together (and there are eight trustees serving the Encephalitis Society)
we have responsibility for the vision and strategic direction of the Society. We have a responsibility for the
“corporate” behaviour of the society. We have certain legal and regulatory responsibilities plus responsibility
for staff and, of course, for all the assets of the society. These, though, are all ultimate responsibilities as we
pass most of the spade work to our hard working and very competent staff.
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I became a trustee over eleven years ago. This was in response to an advert in a national newspaper to which
I responded. I had suffered from encephalitis as a young school teacher and felt, with retirement approaching,
that I could offer some kind of help to those similarly afflicted. Elaine answered my initial enquiring telephone
call in her usual enthusiastic way and I had little choice but to come on board, initially as an observer. New
trustees tend to be overwhelmed by the complexity of the role and I was no exception.
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I remember the early rising (to get from Cheltenham to York in time for the 10:30am meetings), the making of
sandwiches the night before, the initial nervousness when I wondered if what I suggested might be accepted,
the apparent (no disrespect intended) wisdom of the then trustees, the pride of actually taking on my first major
task which was (and I remember it well) the designing of a Research Grant Application Form. I laboured long
over the intricacies of “Word” and “PowerPoint”!
The role of the trustee is essentially what you make of it as you become aware of the skills needed by the
Society in terms of what skills are already covered by colleagues. The
satisfactions are considerable. I am now one of the longer serving
trustees (but by no means the longest!) so I have had the satisfaction
of seeing the Society grow both nationally and internationally. I
have had the intense satisfaction of seeing the value of what we all
do appreciated by the membership. I have had particular personal
pleasure in seeing our research strengths grow and since being Chair
I have tried to make it that we have a happy and positive body of staff,
all of whom know they are valued in the Society.
A trustee will remember the difficult times as well as the personal
satisfactions. Over the years there have been some trustee
Colin Dellar, Chair of the Trustees
resignations. These, perhaps, are inevitable, but I would say that
at this important time in our history, celebrating as we do, fifteen years of growth, my thanks go out to all
of you, especially Elaine, for your part in making the Society what it is today.
More information on what trustees do can be best obtained from www.charitygovernance.co.uk or by telephoning
0207819 1200.
Are you interested in becoming a Trustee?
We are keen to attract potential trustees with a background and experience that will expand the skill base of the
Board, be they members of the Society with personal experience of encephalitis or people from a professional
background with an interest in the work of the Society.
Trustees commit to attending four meetings a year, usually held at York, on a
Saturday, and an AGM held in different parts of the UK. One meeting a year
may involve an overnight stay. Travel and accommodation costs are reimbursed.
You may also be involved in a sub-committee or task group, focusing on the
evaluation or development of some aspect of the life and work of the Society.
The Society provides a training budget for Trustees and new Trustees are
encouraged to take up any locally provided training. A subscription is paid to
“Governance – essential information for effective trustees” the newsletter of
Charity Governance www.charitygovernance.co.uk
If you are interested, please send for a trustee nomination pack and we will
invite you to attend a Board meeting as an observer. You can request your
pack by telephone: 01653 662583, by email: [email protected] or by letter
Encephalitis Resource Centre, 7b Saville Street, Malton YO17 7LL
Meetings
Provisional Programme
The Science of encephalitis – viruses.
Epilepsy workshop
What Trustees do
Anger Management workshop
Encephalitis Support Meeting, Scotland
Encephalitis Society 15th Birthday Bash
Saturday 26th September 2009
Friday 27th November 2009
Dewars Centre, Glover Street, Perth
Central London
12.30 – 4pm
Invitees will include every Challenge event organiser
Everyone welcome.
plus guest.
A programme will be sent to you direct, nearer the
If you have organised a Society Challenge
time, if you live in Scotland. If you live outside
Fundraising events this year, please mark this date
Scotland but would like to attend, please phone
in your diary. It will also be an opportunity for a
01 653 692583.
weekend Christmas shopping break in the Big City!
The Retreat 2010. If you are interested in coming to the Retreat weekend in 2010 then mark the 25th –
28th June 2010 in your diary now! Places sell out almost immediately and we will be sending details and
an application form with the next newsletter.
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Accommodation – if you are intending to stay
overnight to make a weekend break in the city, the
Ramada Hotel are offering a reduced rate. The Hotel is
close to the centre and a short walk from Priory Street.
To make the booking phone 01 904 697 600 and say
you want to make a booking under option no 15918.
The reduced rate for Friday and Saturday nights is £70
per room per night with continental breakfast and you
must book before 25 September.
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Encephalitis Society Annual Meeting
Saturday 24 October 2009
10.30am – 4pm
Priory Street Centre, 15 Priory Street,
York YO1 6ET
Bits and Pieces
UKABIF Conference
BIRT 2009 Conference
New Developments in Acquired Brain Injury
November 11th 2009, Hotel Russell, London
The programme includes sessions on neuroscience,
therapy, neuro-rehabilitation, brain injury litigation,
policy, care planning and outcome measures.
Innovations: Models and Management in Brain Injury
Rehabilitation.
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The conference will include an exhibition and will
be directly followed by a parliamentary reception to
which all delegates are invited.
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Contact Chloë Hayward, UKABIF
Executive Director for further details
Tel: 01752 601318 Email: [email protected]
New developments in neuroscience and rehabilitation
practice.
Venue: Burlington Hotel,
New Street
Birmingham
Dates: 23-24 September 2009
Contact: email [email protected] to
register your interest or see our website www.birt.co.uk.
Changes to the NHS complaints system
On 1st April 2009, the government introduced a new
process for dealing with patients’ complaints about NHS healthcare. Following public feedback, they are streamlining
it from a three-stage to a two-stage process, to make it quicker and easier for a complainant to have their concern
dealt with. The Healthcare Commission will no longer be involved in dealing with patients’ complaints about the NHS
as they will cease to exist on 31st March 2009 and the Health Service Ombudsman will take over.
Web: http://tinyurl.com/cwcpmt.
NHS websites merged
Previously, the NHS had two national websites - NHS Choices and NHS Direct. Now both these websites have been
combined into one - NHS Choices - making online information about health and health services available from one
site. The site will include popular features such as the self help guide, a health encyclopaedia and the online enquiry
service. There will be directories of services, comparative hospital performance data and guides to common longterm conditions, with translations available. The new combined site is available at Web: http://www.nhs.uk
New guide to help healthcare professionals ‘get it right’
Prominent health organisations, including the Royal College of Nursing and the Royal Society of Medicine,
have joined forces with Mencap to produce a best practice guide for health professionals.
The health bodies, representing over one million health professionals in the UK, came together in response to the
publication of Mencap’s ‘Death by indifference’ report, which exposed the shocking deaths of six people with a
learning disability, who died unnecessarily in NHS care. The guide, ‘Getting it right’, aims to stop discrimination
and focuses on improving healthcare for people with a learning disability in the NHS. It is accompanied by an
interactive website. Download the report at Web: http://www.mencap.org.uk/displaypagedoc.asp?id=6770
When small matters become big ones
The following is taken from an article which first appeared in "Synapse" the newsletter of the Brain Injury Associations of Australia and
are reproduced with their permission. www.biaq.com.au"
A brain injury can leave a person with inflexibility or obsessions about things that weren’t formerly a problem. Our
brains work hard to filter the sensations, information and issues we are confronted with every day, so that we can
focus on things that need attention and ignore or defer the rest.
A brain injury can upset this balance and lead to various problems:
• Obsessing over small details or problems that weren’t an issue before
the brain injury
• Difficulty accepting the way other people think, say or do things
• Confronting other people over their mistakes even when they have no
impact on us or anyone else
• Inability to compromise with other people.
These issues are usually due to injury to the frontal lobe of the brain, which normally helps us to jump from one
thought to another. A brain injury can leave people stuck with rigid, inflexible thinking and a kind of tunnel vision on
many issues. This can be very frustrating for other people, particularly family members and partners. The first step
is to understand the cause of your loved one’s behaviour and social interactions — it is not a deliberate choice to be
difficult!
The second step is to develop appropriate responses. It is usually best to redirect the person by changing the subject.
Confronting the person will usually only make problems worse — obsessive or inflexible thinking often arises when
the person is feeling anxious, so getting angry or trying to change the behaviour will only create more rigid thinking!
Information Update
New web site - launched in April
www.encephalitis.info
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The design aims to give a cleaner and more spacious
feel. As you move through the site you will encounter
“portals” that will take you into the next section. The
portals provide a picture label as well as a word label
to aid people with memory problems find their way
around.
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Not all the sections are complete yet, still to be added are
Forums, a Voluntary Register and e-learning packages.
These sections will be developed over the coming year.
The Voluntary Register will enable anyone who has been
affected by encephalitis to provide details of their illness
to provide a comprehensive picture of encephalitis.
This will lead to a greater understanding of the illness
and stimulate research to improve its diagnosis and
treatment.
Forums will provide a zone where you can post your own experiences and questions, and interact with other
people affected by encephalitis.
We are also developing a range of eLearning modules for professionals. These modules will cover a variety of
aspects of Encephalitis and its consequences and will be accessible at any time from anywhere in the world.
The modules will in time be accredited. We aim to expand this learning resource to people affected and their
families.
You Tube
Bringing the Society into the 21st Century we now have some video footage on YouTube.
You can watch it by going to YouTube and searching Encephalitis Society or visit:
http://www.youtube.com/user/EncephalitisSociety
Let us know what you think by rating it and leaving a comment.
Cambridge Memory Manual - A manual for improving everyday memory skills
By Narinder Kapur
This 40-page easy-to-read manual is written by neuropsychologist, Narinder
Kapur, covering a range of topics, such as:
• General advice on understanding and coping with memory difficulties
• Remembering what people tell you
• Remembering where you put something
• Remembering how to get somewhere
• Remembering to do something
• Remembering people’s names
• Remembering past experiences
The manual also has useful sections on frequently asked questions, websites on memory and memory aids, key
memory tips, etc.
The cost is £4.95 (cheques payable to University of Southampton) from Dr N Kapur (MMP), R3 Neurosciences
Box 83, Addenbrooke’s Hospital, Hills Road, Cambridge, CB2 0QQ
The Pain Toolkit - Is for people who live with persistent pain
By Pete Moore
This 20 page booklet is a simple information booklet that could provide you with handy tips
and skills to support you along the way to manage your pain.
We have copies available here at the offices if you could email [email protected] or call us
on 01653 692583.
Book Reviews By Ava Easton, Development Manager
News Items From Contact A Family
www.cafamily.org.uk
£9 Million for Northern Ireland to improve community support
for children with complex needs.
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Children and young people with complex physical healthcare needs in Northern Ireland will be receiving
support to live with their family due to a £9 million investment over the next three years. The aim is to
provide care packages appropriate to the needs of each child and family, including nursing support,
equipment, training and respite care (short breaks). The investment is in addition to a yearly £200,000 for
the Children’s Hospice for outreach services for those with complex physical healthcare needs.
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Specific yearly funding of £220,000 was also announced recently to improve hospital services for children
with intractable epilepsy. For more information visit the Northern Ireland Executive website at Web:
http://www.northernireland.gov.uk/news/news-dhssps/news-dhssps-community-support-for-children020209.
htm
Clarification on the Health Service’s Short Breaks money.
The government has written to every Primary Care Trusts (PCTs) in England setting out the funding position and
specific actions required from PCTs to improve the lives of disabled children. The Care Quality Commission
has also announced it will carry out a special review this year to examine the health and social care for
families with disabled children and young people.
The government has clarified that 1.23% of the £27,596 million additional resources the Department of
Health is making to PCTs from 2008-2011 is for disabled children’s services and has set out priority areas
that should benefit from this expenditure including short breaks, community equipment, wheelchairs and
children’s palliative care. Read the full letters at Web:
http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Dearcolleagueletters/DH_097376
New national representative body for special schools.
The Department for Education and Skills has provided £150,000 in start-up funds to create a national
representative body for special schools. The new body is called the ‘Federation of Leaders in Special
Education’ (FLSE). It aims ‘to shape and deliver SEN policy to ensure every child’s needs are met’. They
welcome all those who are involved in the education of children and young people with special educational
needs. For more information visit Web: http://www.flse.org.uk/
Kids direct short breaks service.
KIDS, a national charity for disabled children and young people have received funding from the Department
for Children Schools and Families (DCSF) to develop a new short
breaks service.
‘KIDS Direct Short break’ will use internet and text messaging
technology to link families with disabled children to short break
workers in their local area who are trained and managed by
KIDS. The service aims to put families in control of their short
break so they can manage them to fit around family life, and be
personalised to the interests and aspirations of the child or young
person (aged up to 25).
From April 2009 funding will be available to all local authorities
that can demonstrate they are ready to deliver high quality short breaks. The service is currently running
in Sutton and Hull, and they are applying to other local authority areas as they develop their short break
services. KIDS would like to hear from parents about how the service would support their family and get an
idea of the local demand. You can use their online form at Web: http://tinyurl.com/cc73oo to register your
interest and they can notify your local authority and provide them with information on Direct Short Breaks
and how it could help your family.
For more information Tel: 0845 453 1000 or visit Web:http://www.directshortbreaks.org.uk.
Attitudes towards disability shocking say UK families with disabled children.
Families with disabled children in the UK feel stigmatised and shut out from society, according to
new research published by Contact a Family. Contact a Family surveyed 615 families with disabled
children about their experiences of living in the UK, asking what makes you stronger practically,
socially and emotionally. ‘What makes my family stronger’ found negative attitudes towards disability
coupled with a lack of services are the main barriers preventing families with disabled children from
leading ordinary lives. While some families show resilience, imagination and great strength attempting
to overcome these barriers, there are some who cannot cope any longer and are at breaking point.
Srabani Sen, Chief Executive of Contact a Family, said: ‘It is shocking that in the UK today, attitudes towards
disabled children, from professionals and members of the public are among the barriers preventing families
from leading ordinary lives. Families with disabled children have enough challenges to overcome to secure the
support they need without also having to cope with prejudice and ignorance.’
Contact a Family is calling for:
• The government to invest in a UK-wide campaign to raise awareness of the needs of families with
disabled children.
• Everyone working in a public facing role in the UK to be given disability equality training. And stronger
focus on disability awareness in schools.
• The much welcomed and significant investment in short breaks services in England must be sustained and
included in the next Spending Review.
• The government to commit to urgently reviewing carers benefits and set a clear timetable for reform.
Contact a Family welcomes the government’s recent investment in services for disabled children and
their families, but there is still a long way to go before the right support is available to all who need them.
Srabani Sen added: ‘Families with disabled children want the same things as other families. They want
to see their children reach their full potential, they want to be included and accepted by their community
and they want to enjoy time together and have fun. ‘For this to happen, professionals need to recognise
each child’s capabilities rather than seeing only disability. They must also recognise the value and expertise
of parent carers. And every one of us needs to be more understanding and accepting of disability.’
Read the report in full at Web: http://www.cafamily.org.uk/wmmfs.pdf
Contact a Family premieres new films.
Contact a Family is premiering three new short films
about families with disabled children. The web videos
feature families talking about their experiences of
raising a child with a disability and the best sources
of support they have found.
You can view the films on our YouTube channel at
Web: http://www.youtube.com/user/cafamily.
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• Almost 70% of families with disabled children said that understanding and acceptance of disability from their
community or society is poor or unsatisfactory.
• Over 60% of families said they don’t feel listened to by professionals.
• Vital support services such as short breaks, a key worker and childcare are unavailable to almost half of families.
• Over 60% of families said they don’t feel valued by society in their role as carers.
• Half of families with disabled children said the opportunity to enjoy play and leisure together is poor or unsatisfactory.
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Key findings of the ‘What makes my family stronger’ report are:
Simpler rules on backdating extra tax credit payments.
If your child is awarded Disability Living Allowance (DLA) or has an
existing DLA award increased to the highest rate, this can lead to extra
child tax credit payments, known as the disability elements. Following
lobbying by Contact a Family and others, the rules on backdating of
these payments have been simplified.
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Prior to April 2009, any parent who wanted to make sure these disability
elements were fully backdated had to notify tax credits both when
they claimed DLA and when they got a DLA award. Many parents lost
out because they were unaware of the need to tell tax credits that a
claim was being made. However, since April 2009 the rules have been
simplified. Now you only need to notify DLA once - when you get an
award. If you are awarded DLA for your child (or have an existing award
increased to the high rate for personal care) let tax credits know within
three months of the DLA decision. So long as you do this, any extra tax
credit payments will be backdated in line with the DLA award. You can
access the new rules in full at Web:
http://www.opsi.gov.uk/si/si2009/pdf/uksi_20090697_en.pdf
If you have any questions about this or any other benefits issues please phone Contact a Family’s helpline on Tel:
0808 808 3555.
Need help to pay for essential items?
Save the Children, in partnership with UK charity Family Action, is distributing cash crisis grants to around a thousand
families who are struggling in the recession. They aim to deliver £150,000 to those families most in need. The money
will be given to help people pay for basic essentials. Help is for low income families with children up to 18 years old,
including families with disabled children. It is particularly aimed at people living on benefits or who have just lost their
jobs. Grants are available in England, Scotland and Wales. Northern Ireland is not covered by the grants because
the Executive has made a £150 one-off household fuel payment to families. To find out how to apply for a crisis
grant please visit Family Action at Web: http://www.family-action.org.uk or download an application form at Web:
http://www.family-action.org.uk/uploads/documents/Families%20in%20Crisis%20Application%20Form.pdf
Family Fund increases age limit in England.
The Family Fund is a national charity which gives grants to families with disabled children. They have recently
increased the age limit of children they can help in England to include 17 year olds, providing the application is
received before the young person’s 18th birthday. This brings it in line with the eligibility criteria for Wales. In
Northern Ireland and Scotland, the age limit of children and young people they can help is 16 years of age or under,
providing the application is received before the 17th birthday.
Web: http://www.familyfund.org.uk/
Help with Costs
If you would like a full list of charities which give grants to families with disabled children, ring the Contact a
Family helpline on Tel: 0808 808 3555.
You can also locate other sources of help at Web: http://www.turn2us.org.uk.
New ways to get in touch on www.makingcontact.org
Contact a Family’s flagship social networking site now has message boards to enable families with children with rare
conditions across the world to share experiences and support each other. There are over 6,000 parents registered on
their on-line service MakingContact.org including parents with a child affected by encephalitis. Parents can make
contact with others whose children have the same condition in order to gain, and give, support through the sharing of
experiences and knowledge. For more information visit Web: http://www.makingcontact.org .
Take part in one of Contact a Family’s podcasts.
Contact a Family is looking for families to take part in our podcast series on what it is like for families affected by
rare disorders. Families whose children have very rare disorders often don’t have a support group to turn to or
access to other parents to share their experiences, so hearing the stories of other families can be a great source of
support. They would like to interview families or affected adults about their experiences of a disorder or having a
child or children with a rare disorder, including encephalitis. A member of Contact a Family staff will visit the family in
their home or a place that is convenient. For more information, contact Sasha Henriques, Information Officer (Rare
Disorders), Tel: 020 7608 8714, mailto: [email protected] .
Contact a Family is on Twitter.
Twitter is an increasingly popular online messaging service that allows you to send out short messages (known as ‘tweets’)
to a group of people. Contact a Family is using Twitter to keep communities updated on what they are doing, in addition
to using it as a way for parents to ‘tweet’ any concerns or queries they may have. You can send a message - whether it’s
a request for information, a rant after a stressful day or just to say hi - and Contact a Family will be happy to tweet back.
If you’re new to Twitter visit Web: http://twitter.com to sign up for free and you can follow Contact a Family on Twitter
at Web: http://twitter.com/contactafamily .
Improving the quality of life for children and young people affected
by neurological conditions.
Cerebra is a charity set up to help improve the lives of children with brain related
conditions through researching, educating and directly supporting children and their
carers. Their grant scheme offers direct and practical assistance. If your child is
aged 16 or under and the equipment or resource that would benefit your child is not
available from statutory agencies, such as social services or the NHS, then contact
their Grants Co-ordinator, Debbie Godsave on Tel: 01267 244 216 or mailto: [email protected] .
They will also be running the speech and language therapy (SALT) voucher scheme again to help children who
need therapy but are not getting it. The voucher is worth up to £500 of speech and language therapy. And, after
a successful scheme in 2007, Cerebra will continue the wills and trust voucher scheme in 2009. The voucher
is worth up to £350 towards the cost of a solicitor or professional will writing service to prepare a will and
discretionary trust to make provision for your child’s future.
For an application or more information on the voucher scheme or the wills and trusts scheme, contact Alex
Elsaesser on Tel: 0800 328 1159 or mailto: [email protected] .
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Contact a Family has produced a new podcast on Special Educational Needs. It briefly explains the meaning of SEN
and other related terms like SENCO (Special Educational Needs Co-ordinator). They explain what to do if you are
concerned that your child has SEN and what schools and the local authority can do to help. The podcast also has
more information about how to request a ‘statutory assessment’ and the ‘statementing’ process, what this means,
how to make sure any provision best meets your child’s needs, and what to do if you are unhappy or want to appeal
against a decision. Listen to the podcast at Web: http://www.cafamily.org.uk/SEN_England.mp3 .
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New podcast on Special Educational Needs (SEN).
Gilley Animation Project
We were delighted to find out in May that we had been successful with an application
to the BBC Children in Need Fund for the cost of animating our storybook for children
“Gilley the Giraffe … who changed”. Some children who have been ill with encephalitis
have problems with reading, visual perception and understanding. The animated
format of the story will enable these children to gain an understanding of their illness
that is not achievable through reading the book.
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The project will also include a CD of interactive games suitable for children recovering
from encephalitis. The games will be structured to help children learn / relearn skills
that are known to be affected by encephalitis such as memory and sequencing. A
working party of parents and professionals will fully research the games with the aim
of producing good examples of how information should be presented to children
with these problems. This will be of benefit to teachers working with our children.
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The animation and games CD will be launched at Cadbury World on Saturday 1 May 2010. Further details of the
launch will be in the next newsletter.
Family Weekend 2010
A Family weekend is being planned to coincide with the launch of the Gilley animation. The residential weekend
will take place from Friday 30 April to Monday 3rd May at Harborne Hall in Birmingham www.harbornehall.co.uk
Harborne Hall is a Training Centre for VSO, based in a lovely old house, in its own secure grounds.
The provisional programme includes the launch at Cadbury World, on-site activities for children, art therapy sessions
for children and parents and (not compulsory) information workshops for parents.
The residential weekend is open to all families and will particularly benefit families with young children. A skilled child
care team will be on hand over the weekend. For further details and an application form please phone the office 01
653 692583. Families on low income may be eligible for assistance with the cost. Families travelling from a distance
may be eligible for a travel bursary.
Head Office
Telephone
Email
Website
7B Saville Street, Malton
North Yorkshire
YO17 7LL
01 653 699 599 (Supportline)
01 653 692 583 (Admin)
01 653 604 369 (Fax)
[email protected]
www.encephalitis.info
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.
WHAT DO YOU DO WITH YOUR NEWSLETTER WHEN YOU’VE
FINISHED WITH IT?
Please don’t bin it, it’s a useful tool in the campaign
to increase awareness of encephalitis - take it to your
Doctor’s surgery, local dentist or hospital waiting room
and leave it for others to read.
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can be sent in at any time.
The Encephalitis Society does not necessarily share all the views and
opinions expressed in the newsletter.