Elijah's Hope is a community interest company established in honor of Elijah Hodges, an 8-year-old boy with a rare genetic disorder, to help families facing challenges due to child illness. The organization provides workshops, luncheon clubs, and newsletters with information to help families access support, therapy, respite, funding, and mobility aids. Founder Kaddy Thomas established Elijah's Hope after difficulties caring for her son Elijah, who became severely brain damaged at 18 months, to support families in similar situations. The organization is promoting the importance of postural care to protect body shape for those with limited movement.

1. ELiJAH’S
H PE CIC
Support today,
hope for the future...
ELIJAH’S NEWS
Welcome to Elijah’s Hope
We are delighted to have officially
launched Elijah’s Hope, a community
interest company (CIC), which will
help and support families facing acute
challenges due to child illness.
Established in honour of eight-year-old Elijah
Hodges, who has a rare genetic disorder, our
organisation will help children, young people
and their families in a number of different
ways.
Our regular newsletters will include the
full details of our upcoming workshops and
luncheon clubs and will outline where and
how you can get supported.
In addition, each issue will be packed full
of useful information to help you get access
to the correct support therapy respite and
funding and mobility aids, to which you
are entitled.
In this first issue you will discover why
Elijah’s Hope was established and learn
the importance of postural care, which
is highlighted through our Postural Care
Positive Deviance Initiative launching in May.
Overall, we want to help take the stress out of
your challenging situation and help make life
easier.
Kaddy with Ali
Vowles and Doctor
Phil Hammond at
Radio Bristol in
February this year.
Life can be a rollercoaster and can
easily get out of control when facing life
changing situations, but through Elijah’s
Hope we can offer the help needed to steer
you back on track.
Founder, Kaddy Thomas.
“
May 2014 - First Edition

2. Elijah’s Hope, Founder Kaddy Thomas,
explains how her son became her
inspiration to help others. Here is her
touching story.
Both Kaddy and Elijah suffer from Apert
Syndrome, a rare genetic condition, which
although Kaddy is able to lead a fairly normal
life, Elijah requires full time care.
Kaddy’s life was a rollercoaster from birth
having been labelled mentally retarded,
which at the age of one resulted in her
Mother placing her in care. She spent eight
years of her life in a residential children’s
home for the severely disabled and two of
those years she was placed in a hospital
for the mentally handicapped. It was a
matron who soon realised Kaddy had been
misdiagnosed and she was released aged nine
into a mainstream children’s home with a
view to be being adopted. Sadly, her fate for
a better life was quashed after being sexually
abused by a foster carer and she ran away
before being placed into emergency care. At
17-years she was placed in a council flat to
live independently and life finally took a turn
for the better when her son Elijah was born.
“Being rejected at birth by my mother stayed
with me until Jesus healed me, so when I
became pregnant with my son he became
my primary focus - my child is very much
wanted and loved. I knew my condition was
hereditary but to me Elijah is one of the best
things that ever happened to me, so I was
having him no matter what. He used to be
able to sit up, talk and play independently
but his life changed for the worse when he
developed severe brain damaged at the age of
18 months.
“I spent months of my life on an emotional
rollercoaster, with so many unanswered
questions trying to come to terms with
what had happened. Elijah used to sit up
and natter but now he is unable to move
or respond. We spent just over a year at the
Children’s Trust in Tadworth undergoing
rehabilitation before moving to North
Somerset in 2009.
I became involved with the North Somerset
Parents Forum for a while and then set up a
parents luncheon club in Weston-super-Mare
in 2011, but I could not self-fund it long term.
“Elijah’s health has deteriorated further
with several months of 2013 spent between
Frenchay and Bristol Children’s Hospital, as
he developed Clostridium Difficile infection
- a type of bacterial infection that can affect
the digestive system. He later developed a
chest infection and at one point was admitted
to intensive care.
“Despite 2013 being the most horrendous
year I decided to use my experiences to help
others. Even after everything Elijah has been
through he’s happy, content and no matter
what is thrown at him he bounces back. He
is my inspiration and the reason I want to
help people. There are others out there who
are going through the same ordeal or worse
situation than me. I want to support and
empower parents, children and young people
with disability and or ill health.
“I’m Elijah’s mum and I’ve set this company
up because I’m sick to death of the injustices
in the disability world. When facing a serious
health problem parents may feel lost in a
world where they have lost the will to live,
and so I want to ensure families are well
supported. I am offering tangible, practical
support to families including helping them to
discover what they are entitled to.”
Who are we?
Even after everything Elijah has been
through he’s happy, content and no matter
what is thrown at him he bounces back.
He is my inspiration and the reason I want
to help people. “
Postural Care -
Positive Deviance Initiative
Elijah’s Hope is keen to promote the
importance of Postural Care.
People with limited movement are
most at risk of developing body shape
distortion because they often sit and
lie in limited positions. Postural care
is about using the right equipment and
positioning techniques to help protect
and restore body shape.
We provide a platform to celebrate and learn
from improved outcomes in protecting
and restoring body shape by launching the
Positive Deviance (PD) Initiative.
The PD approach is a problem solving, asset-based
approach grounded in the fact that
communities have assets or resources they
haven’t tapped. The PD approach brings
about sustainable behavioural and social
change by identifying solutions already
existing in the system.
All Children, Young People and Adults, who
either have little or no movement, need
people who are fully trained in effective
therapeutic night-time positioning. Elijah’s
Hope can help with arranging quality
assured, accredited training in therapeutic
positioning and non-invasive measurement
of body symmetry.
Our first workshops are Postural Care
Awareness Days on Thursday 22nd May &
Tuesday 10th June. If you would like to attend
please contact Kaddy 07577 451 931.
This will include details on:
• Measure Clinics
• Report writing
• Purchase of Sleep equipment
• Identifying suitable mobility aids
• Training for Parents, Carers, Nurses,
Therapists
• Follow up and review
• Training up Postural Care Practitioners

3. Our Postural Care Initiative
Postural Care – we’ve a mountain to
climb and we’ve only just got our boots on!
My name is Sarah Clayton and I am
a married mum with four wonderful
children.
I grew up in a house in which Postural Care
and protection of body shape dominated
many things, the working day for both my
parents, conversations around the dinner
table and I’m pretty sure I was the only person
in school whose friends had all had their body
symmetry measured. I began working with
families supporting children who use Postural
Care in the late 1990s and I have been addicted
ever since. At that time the concepts of
coproduction, positive deviance and outcome
focussed service provision, which I will go on
to discuss, simply did not feature. In 2007 my
world fell apart when my eldest daughter Abi
was diagnosed with a malignant brain tumour
at just 6 years old, by the time we knew what
was happening it had spread throughout the
ventricles of her brain and down her spinal
cord. It has been a devastating journey for Abi
but she, like her mother, is a stubborn little
madam and continues to face every day with
courage and humour.
The Postural Care mountain –
where are we now?
Postural Care is a gentle way of protecting a
person’s body shape. Any person who finds
it difficult to move or to change position
effectively may benefit from Postural Care.
Changes in body shape happen silently,
mostly when we are asleep in our beds, at
a time we would imagine we and those we
love were safe from harm. The danger comes
from gravity and so no matter what age the
person is we must never lower our guard[i].
Ultimately body shape distortion is a killer, it
is an enemy we must treat with the reverence
and respect it deserves.
The Confidential Inquiry into Premature
Death of People with Learning Disabilities[ii]
was published in March 2013 and is a
harrowing read. The team recommended
that adults with learning disabilities are “to
be considered a high-risk group for deaths
from respiratory problems”. They went on to
recommend that alongside access to seasonal
flu and pneumonia vaccinations “…CCGs must
ensure they are commissioning sufficient,
and sufficiently expert, preventative services
for people with learning disabilities regarding
their high risk of respiratory illness. This
would include expert, proactive postural
care support, aggressive treatment of gastro-oesophageal
reflux, the ready availability
of speech and language therapists or other
suitably qualified nurses able to undertake
swallowing assessments, the development
of clear clinical pathways for gastrostomy
insertion, and the frequent review of patients
waiting for a gastrostomy procedure to protect
them from risk of aspirating.”
I would like to introduce an analogy at this
point as we start to think about Postural Care
provision in the UK. I have always imagined
the ultimate goal, eradication of body shape
distortion, as being the summit of a huge
mountain.
Just take a moment to imagine this goal,
think about a world in which hip dislocation
in young children is seen as the glaring
exception and not an accepted norm, a world
in which young people rarely undergo radical
spinal surgery because they just don’t need
to, a world in which people can get on and
live their lives with minimal chronic pain
and discomfort. The view would be amazing
wouldn’t it?
If we go back 25 years we can safely say that
the vast majority of people did not even
know this mountain existed but thanks to
awareness raising work such as the wonderful
2010 Mencap campaign[iii] I hope that we
have now acknowledged its existence and
recognised its sheer enormity.
There is a sense now however that some
service providers, despite their best efforts
have become stuck in the foothills. I am
privileged to work both in the UK and
overseas and I am struck by the common
difficulties faced by practitioners who are
working hard to improve outcomes. There
is frustration at the misconception by some
commissioners that provision a piece of
specialist equipment must mean an improved
outcome.
It is as though practitioners have some of the
tools they need “we provide sleep systems in
this area” and they might be in possession
of a map “we have a care pathway in place”
but are they really striking out towards the
summit and if they are what are their local
commissioners doing to support them?
What do sufficient, and sufficiently expert,
preventative services look like?
What are the key outcomes that they
should aspire to achieve and, if a service is
to describe itself as expert and proactive,
where is the transparency and sharing of
comparable outcomes with other service
providers?
We will only ever reach the
top together.
Postural Care is about making sure that
people who are at risk of developing changes
in their body shape are supported as
symmetrically as possible, as comfortably
as possible, 24 hours a day. It involves
equipment such as wheelchairs, walking
aids, standers, alternative seating, orthotics
and night time positioning equipment, it is
helped by active therapy and encouraging
movement and it is directed by measurement
of body symmetry. Most importantly
Postural Care involves individuals, their
families and personal assistants working
alongside health and social care practitioners
to coproduce effective, person centred
solutions to often complex challenges. Over
the past 25 years we have come to understand
how and why the body changes shape, we
have developed incredible equipment and
technology, we know that people need
timely access to this equipment and have
the Community Equipment Code of Practice
Scheme[iv] but we have only just begun to
grapple with the concept of coproduction.
Henry Ford is quoted as saying that “Quality
means doing it right when no-one is looking”
and this couldn’t be more true of Postural
Care provision. We don’t see amazing results
because a therapist has a Masters level
qualification or a Doctorate, we see amazing
results when we enable, inspire, motivate and
trust families and personal assistants.
Working in partnership with families,
personal assistants and practitioners is for
me the most exciting part of this journey. The
biomechanics, the equipment, the technology
– they are all very interesting and helpful but
there is nothing that compares to the buzz
of seeing people succeed, of supporting a
parent to fashion a solution that best suits
their circumstances, of seeing a family
whose happiness, health and wellbeing are
inextricably linked to one another doing well.
It is this passion, this drive and this sheer
determination that exists within families
that practitioners need somehow to capture,
to embrace and to nurture if we are to ensure
that at 2am the pillow, towel or teddy bear is
in exactly the right place.

4. Clair Lewis’s poem ‘Mother – Care’ gives a
sense of this commitment and drive, here is
an extract:
I am her MOTHER
her full time adorer
who explodes when she smiles
whose heart breaks when she cries
who worries constantly
and continually sheds
the tears which cushion her
ride through this mess
I’m here because I love her
how about you?
don’t compare my contribution
to what you do.
Clair Lewis http://www.johnnypops.demon.
co.uk/poetry/poetry/mothercare.htm
Positive Deviance and Outcome
Focussed Postural Care
The concept of Positive Deviance is one
that we as an organisation have embraced
wholeheartedly[v]. There is a wealth of
information about Positive Deviance
available and this is not the place to go in
to too much detail however, put simply, it
is about looking for the people who achieve
a better outcome than the majority when
faced with the same problem. In the UK
we are actively searching for the services,
families and organisations that achieve great
results in relation to Postural Care and we
are asking them two simple questions, what
have you done and how have you done it?
My experience as a parent of a child that
has undergone treatment for cancer has
taught me what it is like to be supported by
an outward looking team. What do I mean
by this? I mean that the world of paediatric
oncology is one in which a collaborative
approach, a sharing and acknowledgement
of better results, leads to improved services
for children like mine. The team supporting
us as a family are constantly talking to,
working with and supporting other teams
from around the world to improve treatment
outcomes. It is a model that we as an
organisation aspire to and hope we can
support by sharing results from around the
world. A wonderful example of Positive
Deviance can be found in Wakefield.
GMFCS
Gross Motor
Function
Classification
Scale
1
Children
who can walk,
run, jump
and climb
stairs but who
have some
impairment
of speed,
balance
and/or
coordination
2
Children
who can
walk in and
outdoors and
climb stairs
but have some
difficulties
with such
things as
uneven
ground or
crowds
3
Children
who use
walking
aids but use
wheelchairs
for long
distances
4
Children
who use
walking aids
for short
distances
but use
wheelchairs
most of the
time
5
Children
who use
wheelchairs
for all
mobility and
need postural
support in
order to be
able to sit
comfortably
Total
number of
children and
young people
aged 0-18
supported by
the service
Hips
dislocated
75% Migration
over 75% of
femoral head
uncovered by
acetabulum
Wakefield 122 106 46 274 0
Table 1: Outcome data for physiotherapy services in Wakefield district
There are a total of 274 children and young
people aged between 0 and 18 who access
the physiotherapy service in Wakefield led
by Suzanne Carter, of these 122 have a Gross
Motor Function Classification Scale (GMFCS)
of 1, 106 have a GMFCS of 2 or 3 and 46 have
a GMFCS of 4 or 5. In answer to the question
‘What have you done?’ they have reached the
summit. Not a single child or young person
accessing this service has a dislocated hip and
in the past 12 months only 4 have undergone
preventative soft tissue surgery.
The response to the second question is more
complicated and can be found here
www.posturalcareskills.com/living-university
but in essence they are wholly outcome
focussed. Over the past 25 years a culture
of impunity has developed in which basic,
person-centred outcomes are not being
recorded, collated or shared. If you want to
know how successful a school is in teaching
maths you don’t ask how many maths lessons
each child receives – you look at the results
and compare them with similar schools.
The work in Wakefield gives individuals and
their families, commissioners and service
providers a benchmark, surely if we are to
see improvements in services we have to be
asking each and every area what are their
outcomes and how do they compare?
In Suzanne’s own words
“This service hasn’t happened overnight,
it has developed over the last 9 years to
give us the successful outcomes of today.
The important points to stress are that it
is by giving the families some control and
positive expectations for their children
that go more than halfway to bringing
them success. Also, this has been a result
of long term, dedicated staff who are
happy to work alongside each other to
develop a service giving our children the
right to expect these positive outcomes.”
Whilst Suzanne and her team have achieved
a great deal working in partnership with
families they are also very aware that their
service is vulnerable to change, she continues
to work closely with the local commissioning
team to ensure everyone understands the
outcomes they are being paid to deliver.
I come back to the idea of our mountain, of
how far we have to go and of the summit. 25
years into the future we will live in a world
in which hip dislocation in young children
is seen as the glaring exception and not an
accepted norm, a world in which young
people rarely undergo radical spinal surgery
because they just don’t need to, a world in
which people can get on and live their lives
with minimal chronic pain and discomfort.
They are already having a cup of tea and
looking out at the view in Wakefield so if your
initial reaction to this vision was scepticism
this is an opportunity to reflect, a chance to
reconsider what might be possible if only we
were brave enough to look up.
[i] Hill, S. and Goldsmith, J., ‘Biomechanics
and Prevention of Body Shape Distortion’,
The Tizard Learning Disability Review, Vol.
15, Issue 2, pgs. 15 – 29, 2010
[ii] Heslop et al: “Confidential Inquiry into
the Premature Death of People with Learning
Disabilities: Final Report.” Norah Fry
Research Centre, March 2013
[iii] Postural Care Action Group www.
mencap.org.uk/posturalcare
[iv] Community Equipment Code of Practice
Scheme (CECOPS) www.cecops.org.uk
[v] The Postural Care Living University www.
posturalcareskills.com/living-university
PMLD Link Article December 2013
Posted on January 5, 2014 by Sarah Clayton
This article was published in PMLD Link in December 2013. This journal is dedicated to promoting best practice
and information to improve the lives of individuals with complex physical and learning disabilities. You can
subscribe to PMLD Link at http://www.pmldlink.org.uk/

5. Postural Care Awareness Day
Protection of body shape – a better
quality of life for individuals with
complex physical needs.
What is a Postural Care Awareness Day?
Recommendation 9 of CIPOLD states
that people with Learning Disabilities be
considered at high risk of respiratory illness
and should have access to proactive, expert,
preventative postural care services – but what
does this mean and how do we know we are
providing it? An Awareness Day provides
people with an opportunity to learn about
the general principles of postural care, to
discuss their role in supporting postural care
provision and to consider some of the lessons
that have been learned by others.
What will we cover during the day?
We are able to cover a range of topics from
our accredited course programmes and so
we can be flexible with our Awareness Day
content. Usually people ask us to cover the
following topics: how and why does the body
change shape; protection of the hips and
pelvis; protection of the chest and spine;
safety planning; thermal comfort; how to
demonstrate objective outcomes.
We usually offer a practical session during
which we demonstrate how to position an
individual in lying.
Who might benefit from attending?
Anyone with an interest in supporting
individuals to access 24 hour postural care or
those with a responsibility to demonstrating
outcomes in relation to service provision.
We want to invite both practitioners and
family carers, is that OK? Absolutely. We are
passionate about supporting everyone to
learn together, in 2010 we were shortlisted
for an Accolade Award for most effective
practice in workforce development for doing
just that!
How long will the day last and how many
people can come along?
We can offer a range of times to suit your
organisation including evening sessions.
We find that a maximum number of 30
people allows for constructive discussion
without overwhelming those who wish to ask
questions.
Protection of body shape – a better quality of life
for individuals with complex physical needs
Protection of body shape – a better quality of life
for individuals with complex physical needs
Sample Awareness Day Programme
9.30am Welcome and Introductions
10.00am Presentation and Discussion
What is a Postural Care Awareness Day? Recommendation 9 of CIPOLD states
that people with Learning Disabilities be considered at high risk of respiratory
illness and should have access to proactive, expert, preventative postural care
services – but what does this mean and how do we know we are providing it? An
Awareness Day provides people with an opportunity to learn about the general
principles of postural care, to discuss their role in supporting postural care provision
and to consider some of the lessons that have been learned by others.
What will we cover during the day? We are able to cover a range of topics from our
accredited course programmes and so we can be flexible with our Awareness Day
content. Usually people ask us to cover the following topics: how and why does the
body change shape; protection of the hips and pelvis; protection of the chest and
spine; safety planning; thermal comfort; how to demonstrate objective outcomes.
We usually offer a practical session during which we demonstrate how to position
an individual in lying.
Who might benefit from attending? Anyone with an interest in supporting
individuals to access 24 hour postural care or those with a responsibility to
demonstrating outcomes in relation to service provision.
We want to invite both practitioners and family carers, is that OK? Absolutely. We
are passionate about supporting everyone to learn together, in 2010 we were
shortlisted for an Accolade Award for most effective practice in workforce
What is a Postural Care Awareness Day? Recommendation 9 of CIPOLD states
that people with Learning Disabilities be considered at high risk of respiratory
illness and should have access to proactive, expert, preventative postural care
services – but what does this mean and how do we know we are providing it? An
Awareness Day provides people with an opportunity to learn about the general
principles of postural care, to discuss their role in supporting postural care provision
and to consider some of the lessons that have been learned by others.
What will we cover during the day? We are able to cover a range of topics from our
accredited course programmes and so we can be flexible with our Awareness Day
content. Usually people ask us to cover the following topics: how and why does the
body change shape; protection of the hips and pelvis; protection of the chest and
spine; safety planning; thermal comfort; how to demonstrate objective outcomes.
We usually offer a practical session during which we demonstrate how to position
an individual in lying.
Who might benefit from attending? Anyone with an interest in supporting
individuals to access 24 hour postural care or those with a responsibility to
demonstrating outcomes in relation to service provision.
We want to invite both practitioners and family carers, is that OK? Absolutely. We
‘How and why does the body change shape – protecting the hips, pelvis,
chest and spine’
11.30am Coffee Break
11.45am Presentation - The Family Project, what can we learn from people that
have done this before?
1.00pm Lunch
1.45pm Practical Activities – predicting body shape distortion
2.15pm Safety Planning
3.00pm Plans for the future
4.00pm Close
Postural Care CIC are a social enterprise
specialising in the development and
delivery of accredited postural care training.
We are able to offer:
Nationally recognised training in the use of
postural care and measurement of body symmetry
in partnership with OCNWMR
Support for both families and therapists who are
looking to provide postural care for individuals
with complex body shape
Train the trainer courses for therapists and other
health or social care professionals who wish to
deliver accredited training
Please visit our website:
www.posturalcareskills.com
or contact Sarah@posturalcareskills.com who will
be more than happy to discuss how we might be
able to help.
University of Bristol - CIPOLD
is the Confidential Inquiry into
premature deaths of people
with learning disabilities.
CIPOLD is funded by the
Department of Health.
We aim to improve the health and
well-being of people with learning
disabilities by carrying out an
inquiry into their death.
For general enquiries contact the
CIPOLD office:
Email: ci-team@bristol.ac.uk
Tel: 0117 331 0980
Norah Fry Research Centre
8 Priory Road
Bristol
BS8 1TZ
Social Media
If you would like to keep up to date with what we
are doing here at Elijah’s Hope then you can:
Follow us on Twitter:
@ElijahsHopeCIC
Like our Facebook page:
www.facebook.com/ElijahsHope
Connect with us on LinkedIn:
www.linkedin.com/in/elijahshope
Add us on Google+:
Kaddy Thomas

6. Supported by
Postural Care
Protecting and restoring
body shape
Do you support someone with multiple disabilities or
responsible for commissioning services for them?
If the answer is yes, you need to know about postural care.
Supported by
Postural Care
Protecting and restoring
body shape
support someone with multiple disabilities or
are you responsible for commissioning services for them?
If the answer is yes, you need to know about postural care.
For more information visit: www.mencap.org.uk
The importance
of protecting
body shape
Mencap and a number of
organisations, including Postural Care
Skills, PAMIS, the Chartered Society of
Physiotherapy and the Royal College of
Nursing came together in 2008 to form
the Postural Care Action group.
Together we wanted to raise awareness about
the importance of postural care. Postural
care is about protecting body shape for
people with complex healthcare needs and
movement difficulties, such as those with
profound and multiple learning disabilities.
People who find it hard to move are most at
risk of developing body shape distortions.
This is because they often sit and lie in
limited positions. Postural care is about
using the right equipment and positioning
techniques to help protect and restore body
shape. The earlier the intervention, the better
- but it is never too late to start protecting
someone’s body shape.
Failure to protect body shape can have
serious consequences for a person’s health
and quality of life. It can even cause
premature death.
Over the last couple of years we have been
running an awareness-raising campaign to
tell more people about this important issue.
The campaign is aimed at all those who
support people with multiple disabilities or
who commission services for them.
We want to challenge the assumption that
distortion of body shape is inevitable for
people with multiple disabilities. We want
all people with multiple disabilities to get
the support they need to protect their body
shape, 24 hours a day.
“
The booklet, film clips and presentation can
be viewed at:
www.mencap.org.uk/posturalcare
Please use these materials to help spread the
word. We want as many people as possible to
understand the importance of postural care.
11 pathway
There needs to be a clear postural care pathway in place,
which involves professionals and families working together
to support someone’s posture.
We have produced a booklet and some short
filmclips explaining why postural care is
important and what you can do to take
action to ensure that appropriate postural
care services are developed in your local
area. We have also developed a powerpoint
presentation, which you could use to tell
other people about the importance of
postural care.

7. Workshops & Events
As part of our on-going commitment to
helping people in need, Elijah’s Hope
stages regular workshops and monthly
luncheons.
We will be launching the Postural Care
- Positive Deviance Initiative in May
starting in Bristol and we will cover the
whole of the South West.
The aim of our events will be able to
bring likeminded people together to
share their experiences and offer one to
one peer support.
Please find details below of our upcoming events:
*Workshops:
Postural Care Awareness Day
• Thursday 22nd May - Bristol
• Tuesday 10th June - Bristol
Also, in May, we will be running the first
of our Swimathon’s at Kings Fitness &
Leisure Centre in Cheddar (booking form
below).
We are hoping to put on a whole series of
these in each county in the South West so
visit our new website at
www.elijahs-hope.org, download a form
and get fundraising!! You can also use
our form below, just complete and return.
By raising cash you will be changing
children’s lives for the better. All money
raised will be split between Elijah’s Hope
and also CDKL5 (www.cdkluk.org).
* The Parent Cafe
Parents weekly evening support group
meet on Tuesday’s every week at The
Barn, Clevedon 19:30 until 21:00
ELIJAH’S HOPE SWIMATHON BOOKING FORM
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......................................................................................................................................................................................................
Telephone / Mobile ................................................................................................................................................................
Email .........................................................................................................................................................................................
Team entry Yes  No 
Names of team members .....................................................................................................................................................
......................................................................................................................................................................................................
Individual entry Yes  No 
Payment required on booking
Group = £ ___________
Individual = £ ___________
Return the completed booking form and entry fee to:
Kaddy Thomas, Elijah’s Hope CIC, 41 Churchill Avenue,
Clevedon, North Somerset BS21 6QN
Cheques made payable to Elijah’s Hope CIC
✂
CAN YOU
SWIM THE CHANNEL?
W THE FUN!
Saturday
17th May 2014
12:00 to 5:00pm
Kings Fitness
& Leisure
Cheddar
POOLING CASH FOR ELIJAH’S HOPE AND CDKL5
JOIN US TAKE THE PLUNGE AND SIGN UP
FOR A SWIM THE ENGLISH CHANNEL EVENT
You won’t actually swim the channel of course, we
are looking for teams or individuals to swim in total
21 miles for 2 worthy causes - Elijah’s Hope & CDKL5
By raising cash for Elijah’s Hope and CDKL5 UK you’ll be helping to
change children’s lives for the better because the money raised will be
ploughed back into the company, which helps ill or disabled children
and their families.
CDKL5 UK is a UK based charity that has been set up to raise awareness
and vital funds for the global research effort. The trustees of CDKL5 UK
are made up of parents living with a child with CDKL5 as well as family
and friends who all share the same goal. CDKL5 is classed as a orphan
disease, as it affects a small percentage of the population.
CIC
Support today,
hope for the future...
Entries
Teams (max 5) £25.00
Adults £10.00
Children &
Young People £6.00
Sponsorship forms can be
downloaded via our website.
www.elijahs-hope.org
Please take part and help to
make a difference.
Minimum sponsorship is
£100.00 for Single entries
and £350.00 for Teams
Kings Fitness & Leisure | Station Road | Cheddar | Somerset | BS27 3AH

8. Parent Forums
The Bournemouth Parent and Carer Forum
are involved with consultations regarding all
kinds of changes that are going to impact on
families with children/adults ages from 0 – 25
years old with may have Special Educational
Needs, Complex Medical, Social, Emotional,
Behavioural and other disabilities.
We offer a specialist consultation and participation
service that gives parents and carers a voice about
the services and support their children and families
receive. So by listening we can clearly identify what
is commonly working well, what needs improving
and what is missing – also referred to as “gaps in
provision”. The feedback we gather is fed back via
meetings with Bournemouth Borough Council, NHS,
Social Services and other agencies.
We hold regular events such as workshops, training,
coffee mornings, advice, peer to peer support.
Email: bournemouthparentcarerforum@gmail.com
Web: www.parentcarerforum.co.uk
Registered Charity Number 1151503
CAKE
Care, Advice, Knowledge,
Empathy
Are you a parent of a child or young person
with a disability and/or additional needs?
Are you concerned about your child’s
behaviour or social skills?
Do you sometimes wish you had someone
to talk to?
Come along to the Parent Cafe.
We are a group of parents with children and young
people with additional needs. We are here to
support, listen, chat to and get information from.
You do not need to have a diagnosis for your child
to come along!
Every Tuesday at The Barn, Clevedon
From 7.30pm – 9pm
Just come along, there is no charge and
refreshments are available. Please contact us if you
would like to come along as the venue may change.
Contact Angie or Lorna
angie.pass@hotmail.co.uk
lornarob18@gmail.com
or phone 07910 265513
BOURNEMOUTH PARENT
CARER
FORUM
THE PARENT CAFE
PARENT CARER COUNCIL FOR CORNWALL
Our aim is to gather information from Parent Carers and using
these unique shared experiences, we take part in consultations and
participation work which helps us to shape the development and
delivery of services to our children.
We also pass on information to families via a newsletter enabling parent carers to
gain greater knowledge and understanding of the services available from health,
education, local authority and the voluntary sector.
Contact Details: Kay Henry 07973 763332 • k.henry61@btinternet.co.uk
http://www.parentcarercouncilcornwall.org.uk
Founded in 2008, the Wiltshire Parent Carer Council (WPCC), is an
independent voluntary organization, which is managed and run by
parent carers, for parent carers.
We provide a consultation and participation service which enables
parent carers to have a voice services and support their children
and families use. This service offers real opportunities to influence
and shape provision.
We also provide the Special Educational Needs and Disabilities
Information Service, which offers a wealth of information as well
as signposting to specialist services.
Our bespoke website aims to give visitors an enjoyable experience
in accessing the information they require, or finding out things
they never knew about!
Contact one of the team to support you through the website, or to
access information. We are open from 10am-5pm Monday-Friday.
(Moving 13/3/14)!!!! – but email is the same
Wiltshire
Parent
Carer
Council,
Freepost
RSXC-­‐YTUB-­‐KTBL,
Fordbrook
Business
Centre,
Unit
3,
Marlborough
Road,
Pewsey,
Wiltshire,
SN9
5NU
admin@wiltspcc.co.uk
01672
569300
Improving Services for
Disabled Children
WILTSHIRE
PARENT CARER
COUNCIL
Founded in 2008, the Wiltshire
Parent Carer Council
(WPCC), is an independent
voluntary organization, which
is managed and run by parent
carers, for parent carers.
We provide a consultation and
participation service which enables
parent carers to have a voice
services and support their children
and families use. This service offers
real opportunities to influence and
shape provision.
We also provide the Special
Educational Needs and Disabilities
Information Service, which offers
a wealth of information as well as
signposting to specialist services.
Our bespoke website aims to give
visitors an enjoyable experience
in accessing the information they
require, or finding out things they
never knew about!
Contact one of the team to
support you through the website,
or to access information.
We are open from 10am-5pm
Monday-Friday.
(Moving 13/3/14)
Wiltshire Parent Carer Council,
Freepost RSXC-YTUB-KTBL,
Fordbrook Business Centre,
Unit 3, Marlborough Road, Pewsey,
Wiltshire, SN9 5NU
admin@wiltspcc.co.uk
01672 569300
Contact a Family is the only national charity that
exists to support the families of disabled children
whatever their condition or disability.
With over 30 years of experience, our vision is that families with
disabled children are empowered to live the lives they want and
achieve their full potential, for themselves, for the communities
they live in, and for society. It’s why we offer support, information
and advice to over 340,000 families each year and campaign
for families to receive a better deal.
Contact a Family offers a range of ways for parent carers to get
the support, advice and information they need. This includes:
• Our free national helpline – 0808 808 3555 –
where you can speak to one of our expert advisors for
information, advice and help on any aspect of caring for
a disabled child. Our parent advisers are available on our
helpline Monday to Friday, 9.30am to 5.00pm.
Alternatively you can email: helpline@cafamily.org.uk,
post an enquiry on Facebook or Twitter.
• Our benefits and welfare experts are also on hand via our
helpline to provide you with the practical advice and support
to help you find the best way through the benefits and tax
credit maze.
“I am so glad I got the opportunity to have the help and support
from Contact a Family. I can’t begin to explain how they helped
me and my family through a very difficult time.” Helen, mum.
• We work across the UK to offer local support, advice and
information in your area.
• Our education service is aimed at parents with, or who
suspect their child may have, special educational needs (SEN).
• Contact a Family publishes a range of guides available online
and in print covering all aspects of raising a disabled child.
• Relevant, up to date and validated information on hundreds
of disabilities and conditions is available via our online
medical directory. Find out more about the causes, symptoms,
treatment and the support available.
• makingcontact.org is our special linking website which
connects families going through similar experiences.
• Supported by Contact a Family, our parent support groups are
an ideal way to meet other parents and carers for friendship,
for opportunities to socialise and to share information.
For more information about all of Contact a Family’s information,
advice and support services please visit www.cafamily.org.uk

9. 3rd Floor, Royal Oak House, Royal Oak
Avenue, Bristol BS1 4GB
Information & Support: 0117 989 7725
10 am – 2 pm
Mon, Wed & Fri during term time
Answer phone at all other times
Parent Enquiries
Email: support@supportiveparents.org.uk
www.supportiveparents.org.uk
Admin: 0117 9897724
Email: mail@supportiveparents.org.uk
Parent Partnership Services (PPS) offer
free, confidential advice, information
and support to parents and carers
about special educational needs and
disability (SEND).
In North Somerset this service is provided by
Supportive Parents.
We are one of the most established independent
Parent Partnership Services in the country offering
effective partnership working with families and
statutory services for the last 24 years!
Supportive Parents is a charity providing
information and support to families of children
with any type of special educational needs (SEN)
from 0-19 years in North Somerset.
We are an independent organisation offering a
free, confidential and impartial service to any
parent who has a concern about their child’s
Special Educational Needs and/or disability.
We encourage parents and professional to work
more closely together in the interests of the
children, to voice the views of parents and raise
awareness of SEN.
Our service consists of:
• Information and Support Line
Open 10am-2pm, Monday, Wednesday and
Friday during term time only - 0117 9897725
(answerphone at all other times)
• Help with paperwork and preparation
for meetings.
• We run a monthly support group alternating
between The Firs in Weston Super Mare and
The Firs, St Barnabas, Portishead.
• The local coordinator works to support the
local Parent Carer Forum, Our Voice Counts and
has facilitated the SEN parent/carer workshops
since the forum was established in 2008.
• Free parent courses designed to give an
overview of relevant Education policies
and specific information relating to special
educational provision.
• Courses aimed at SENCO’s, school governors
and trainee Educational Psychologists.
• Regular E bulletins, to keep you up to date with
information and SEND developments.
• Termly newsletter available on our website or
hard copy if required.
Feedback from Service users;
“Over the past 7 years Supportive Parents have
helped with just about every aspect of our needs.
Always very friendly, understanding and incredibly
useful.”
Comment from North Somerset Parent
“Big thank you for a lovely, helpful and friendly
support group last week.”
Telephone call from a North Somerset Parent
“Thank you Supportive Parents, for your support in
the weeks running up to and at the school meeting.
You’re amazing!!”
Facebook comment from a North Somerset parent
“I wanted to say a massive thank you for all your
help, both before and during the meeting. It was
fantastic to have the support and it gave us much
more confidence going into the meeting”
Email from a North Somerset Parent
For further information please visit our website
www.supportiveparents.org.uk
Or visit our Facebook and Twitter pages.
educational
partnerships
professionals.
Registered Charity No: 1079761 Registered in England
and Wales as Supportive Parents for Special Children
Company limited by Guarantee No. 3905996
Partnership with:
languages, please contact us.
Providing the Parent Partnership
Service for Bristol, North Somerset
and South Gloucestershire
FOR PARENTS AND CARERS OF CHILDREN WITH SPECIAL
EDUCATIONAL NEEDS AND DISABILITY (SEND)
THIS SPACE
COULD BE YOURS!!
Call Kaddy
NOW
to advertise.
07577 451931

10. WE NEED
YOU!
For our next Newsletter we would like you to.........
draw a picture, write a song, poem and or a story to
be featured on our Youth Page.
Please send your work to: kaddy@elijahs-hope.org

11. www.elijahs-hope.org
ELiJAH’S
H PE CIC
Support today,
hope for the future...
41 Churchill Avenue, Clevedon, North Somerset BS21 6QN Tel: 01275 269359 Mob: 07577 451931
Email: kaddy@elijahs-hope.org Web: www.elijahs-hope.org
Twitter: @ElijahsHopeCIC • Facebook: www.facebook.com/ElijahsHope • LinkedIn: www.linkedin.com/in/elijahshope
Registered Office: Elijah’s Hope CIC, Hollingdale Pooley, Bromford House, 23 Westfield Park, Clifton, BS6 6LT Tel: 0117 973 3377 Fax: 0117 973 3371 Company No: 8661632
Members of Voluntary Action North Somerset