Together issue 10

Team Whitlock Bedroom Tax Shine Awards
Families
that Shine!
Vote for your
new Board
Issue 10

Shine CEO, Jackie
Bland, and Bullens CEO,
Peter Bullen, recently
met to celebrate the
sponsorship of the new
WinnersWearYellow™
running vests. The
sponsorship deal will
enable the distinctive
Shine brand to grow,
whilst at the same time
promoting the unique
service offered by
Bullens which ensures
you receive all the
ostomy and pharmacy
products you require,
delivered straight to your
door. To find out more
call 0800 269327 and
mention you are a Shine
member. For every
Shine member that uses
Bullens, Shine receives a
5% donation from sales.
As part of their extraordinary number
of great fundraising events, Johnny
Vinson and his amazing group scaled
Snowdon earlier this month ... on
their mountain bikes! Johnny was
inspired to lead the challenge in
memory of William-Edward Bye, who
was the son of his close friends.

Welcome to Together
3
CONTENTS
P4 Shine Awards
P8 Support Groups
P12 Membership Update
P15 Housing Adaptation
P18 Gobi’s Gossip
P22 Go Folic!
P24 Shine NI News
P27 Competition Time!
Submission dates for
Summer edition
• Register of interest to submit:
16th September 2013
• Final date for submissions:
1st October 2013
• Publication date:
November 2013
Together Editor: Tom Scott
Deputy Editor: Louise Tyler
All enquiries and comments to:
Together Shine, 42 Park Road,
Peterborough, PE1 2UQ
Telephone: 01733 555988
Textphone service: 01733 421395
info@shinecharity.org.uk
www.shinecharity.org.uk
Registered Charity No. 249338
Please let us know if you are happy to
receive future mailings by email as this
saves on postage and helps the
environment.
Email: info@shinecharity.org.uk
Issue 10! That’s right, this is
the tenth copy of Together
to be published and the
ninth edition that I have had
the pleasure of working on.
Thanks to everyone who
has contributed so far.
In this issue we have a
great variety of features,
photos, health information, and benefits advice.
We’re also asking you to send us your
nominations for this year’s Shine awards, and
there are tips on how to get involved in the second
Spina Bifida and Hydrocephalus Awareness Week
this October.
Our features focus on two families who have
taken their experience of Shine, and launched into
dynamic fundraising to ensure that the support we
offer is always available and life-changing. Our
grateful thanks go to both of them.
With your copy of Together we have included a
copy of our brand new fundraising brochure,
Getting started as a Shine fundraiser. Here at
Shine we owe everything we are able to do for our
members to our funders and fundraisers, most of
whom have great fun as they help raise money. If
you feel could join these marvellous supporters in
some way, this booklet is designed to help you
take simple steps towards fundraising for Shine,
whilst at the same time enjoying yourself and
raising the profile of the charity. If you need any
more information, or if you would like to sign up for
an activity or event, please call Hannah on 01733
421351, she’s always on hand to help and advise.
In the meantime, enjoy this packed edition of
Together and please continue to send me your
ideas, articles, and images, they really do make a
difference to every reader that sees them.
Issue 10... Our
tenth copy!
Cover photo: Nikki Dalgarno and Ethan Dalgarno. Photo: Tom Scott

Shine Awards
4 www.shinecharity.org.uk/shineawards
The 2013 Shine Awards will be presented at
the Annual General Meeting on October 24th,
during Awareness Week, and the search for
nominations is on.
There are four award categories which are open
to Shine member nominations. Please think hard
about anyone whose work or contribution merits a
nomination and follow the easy process below.
The categories are:
• Shine Volunteer of the Year – Do you know
someone whose voluntary contribution is
outstanding? Someone who goes the extra
mile? Someone who willingly gives their free
time to really make a difference to others?
• Shine Young Achiever – This Award goes to a
young person between the ages of 10 and 25
who is a real achiever in one of more areas of
their life
• Shine Professional 2013 – Is there a
professional who you think has distinguished
themselves in the world of spina bifida and
hydrocephalus and deserves recognition for
their work?
• The John and
Lucille Van
Geest Award for
Outstanding Contribution to the Shine
Community – this award goes to a person of
any age with spina bifida and/or hydrocephalus
who has helped to make our community – at
local or national level – a better place.
In addition to these open Awards, a Shine panel
of judges will make Awards for Fundraisers of the
Year, Shine Ambassador of the Year and the
coveted Lifetime Contribution Award.
To nominate someone for an award please fill in
the following form, making sure that you complete
all the details. If you prefer, you can go straight to
www.shinecharity.org.uk/shineawards and
complete the nomination on-line.
Whatever you do, please make sure you
nominate someone who really deserves to be
recognised. If your nominee is chosen for an
award you will receive an invitation to come
and see them receive their award.
Nomination Form – Shine Awards
Your name:
Your e-mail/telephone details:
The Award you want to nominate someone for:
The name of the person you wish to nominate:
Contact details for your nominee:
Please tell us why the person you have nominated deserves this award. Please give as much fact/detail
as possible and write no more than 300 words. Please continue on a separate sheet if necessary.
Recognising the people
who Shine in 2013

C facebook.com/ShineUKCharity @SHINEUKCharity 5
David Nicholson
News
We are saddened to inform you that
David Nicholson, former member of
the Your Voice committee and the
Board of Directors, passed away on
the 28th February 2013.
David was born with hydrocephalus and was a
member and supporter of Shine. He was on the
Your Voice committee from 1997-2010, as well as
being a member of the Board of Directors from
2000-2010.
David played a very active role in fundraising and
was part of the GMTV! Get up and Give appeal in
1999, which raised £140,000. He frequently
appeared in the Your Voice magazine, writing
articles and was often featuring in photographs.
David worked as a chartered accountant and
brought his invaluable skills to his role with Shine.
We are very grateful for the bequest David left to
Shine in his will; it will enable us to continue
providing our vital services.
Staff news
Our aim by 2016 is to remember the excellent
work of this charity by having a lasting memorial.
How are we going to achieve this? We are going
to identify the most important landmark events
throughout the history of spina bifida and
hydrocephalus, and celebrate this in different
ways. We could have a time line within the
Peterborough Head Office, an exhibition of items
from the past to the present. We will need stories
told by members: written, recorded, or filmed.
These need to be bite-sized, about specific issues
and not life stories. They need to be positive and
must reflect the remarkable achievements and, in
some cases, the pitfalls experienced on the
journey.
Please contact Joan Pheasant if you wish to be
involved and are willing to talk about your
experiences. This could be something that has
inspired you, or something you have achieved
against all odds. You can give a short synopsis of
your story via phone or email T: 0113 2556767 or
E: joan.pheasant@shinecharity.org.uk.
We are also looking for historic pieces of
equipment and relevant objects of interest. Please
send a photo of anything you have that you wish
to donate or loan to the exhibition.
At Shine, we have many archived publications,
including an almost full set of the Link Magazine
but are missing the following copies - Issues 1, 10,
14, 44, 112 and 118. It would be great if we could
find these. We would be pleased to hear if you
have any other printed materials that we could use.
Do get in touch if you would like to be involved or
have any ideas on how we can develop our
Heritage Project to honour our 50 years of
success.
ASBAH to Shine – Celebrating 50 years in 2016
It’s been a busy time with staff changes here at
Shine again. We have sadly said goodbye to Jane
Bishop who was part of the Grants and Trusts
Fundraising team, Christine Cousins, the Solent
Area Shops Coordinator, and Denise Taylor who
was the Secretary for the London and South
Region. Finally, Ian Morley, our Collections Officer,
who could often be tracked down somewhere in
the community disguised as Benny Bear has also
moved on to pastures new (hide this from our
younger readers if you don’t want to give away the
secret!). We wish every one of our leavers all the
best with their new ventures, and thank them for
their many combined years of hard work and loyal
service.
Joanne Tailor has joined us as the new London
and South Administrator at our new office in
Orpington; Sam Lyons is our new Fundraising
Development Officer, and Cheyenne Graves and
Siobhan McGowan are new additions to the Grants
and Trusts Fundraising department. Welcome one
and all – we look forward to working with you and
wish you a long and happy career as part of the
Shine community!

Specialised Commissioning
Update on Specialised
Commissioning
Lyn.rylance@shinecharity.org.uk
6 www.shinecharity.org.uk/specialisedcommissioning
A huge thank you and congratulations to Shine members who have managed to
get meetings with their MPs to discuss better healthcare.
As highlighted in previous issues
of Together, the NHS has decided
that spina bifida is not a condition
that needs specialist national
commissioning, whereas people
with spinal cord injury have a
specially designed resource.
Since the last report in Together, a
national project group has been
formed to take this work forward.
This group met for the first time at
the Chelsea and Westminster
Hospital, home of the only adult
multidisciplinary clinic in England.
The group comprises:
Mr Andrew Baird: Consultant
in Adolescent &
Reconstructive Urology,
Aintree Hospital, Liverpool
Miss Maria Cartmill: Adult &
Paediatric Neurosurgeon,
Queen's Medical Centre,
Nottingham
Mr Frank Lee: Consultant
Urological Surgeon, St
George's Hospital, London
Dr Richard Morgan: Clinical
Director, Medicine and A&E
Directorate, Chelsea &
Westminster Hospital
Foundation Trust, London
David Ash: Urology Nurse,
Princess Royal Spinal Injuries
Centre, Northern General
Hospital, Sheffield
Jackie Bland: Shine CEO
Patricia Adley: Solicitor and
Member of Shine, London
Liz Potts: Shine Support &
Development Worker (North
Staffordshire) and Member
of Shine
Heather Doughty: Member of
Shine and Shine Adult
Members Council
(Nottingham)
Gill Yaz: Shine Health &
Development Manager
The group resolved that the
current situation facing adults with
spina bifida is unacceptable; we
should pursue a recognised
healthcare pathway for adults
with spina bifida and address the
inequality between patients with
spina bifida and those with an
acquired spinal injury.
A template letter has been
produced for Shine members
(and concerned parents) to send
to their MPs. You can find this
letter at www.shinecharity.org.uk/
specialisedcommissioning or call
01733 421356 for a copy.
A number of members have
already used the letter or written
to their MPs independently. So far
several have agreed to meet to
discuss the issue and one MP
has secured a meeting with the
Secretary of State for Health. One
MP received a letter from the
NHS CEO, Sir David Nicholson,
who explained that while the NHS
was reviewing services which
might be specially commissioned,
expert clinical advisers decided to
advise against spina bifida being
a condition identified as needing
specialised commissioning. This
is new information; up to this point
Shine had understood that spina
bifida had not been considered.
According to the NHS now, spina
bifida was actually considered by
experts, and their view was that it
was not a ‘special case’ despite
spinal cord injury being included.
A letter has now been sent from
Shine to the NHS CEO asking for
some information about how this
decision was made, who the
expert advisers were, and why
Shine was not aware that this
issue was being considered.
This is a very difficult time to be
trying to get the NHS to change,
so the efforts of the Shine
community are really needed if
we are going to bring about a
better situation than we currently
have. So please:
1. Talk to people about this issue;
2. Write to your MP;
3. Let us know your experiences
of healthcare – where it hasn’t
worked so well, where it has
worked and what would
improve things for you as an
adult with spina bifida;
4. Let us know what you think
about this issue by emailing
Lyn Rylance.
E:

Benefits update
www.shinecharity.org.uk/specialisedcommissioning 7
Bedroom tax
New rules mean that if you are a
social tenant, you won't be able
to get full housing benefit if your
home is deemed to have ‘spare
bedrooms’. This is being called
the ‘bedroom tax’. Letters from
the council may call it ‘under-
occupancy rules' or 'size limit
rules’.
How many bedrooms can you
claim housing benefit for?
New rules mean that you can
only claim housing benefit for:
• one bedroom for a couple
• one bedroom for a person
aged 16 or over
• one bedroom for two children
aged under 16 of the same
sex
• one bedroom for two children
aged under 10 (boys and girls
are expected to share a room)
• one bedroom for any other
child
• one extra bedroom if you or
your partner needs an
overnight carer to stay.
Who will be most affected by
the ‘bedroom tax’ rules?
63% of those affected will be
disabled, and around 180,000
will be Disability Living
Allowance claimants. Those
affected could lose between
14% and 25% of their housing
benefit support.
You can’t claim housing benefit
for ‘extra’ rooms for:
• children visiting a divorced or
separated parent
• couples who use separate
bedrooms because of illness
or disability
• rooms used by disabled
adults to store medical
equipment.
Who will be least affected by
the bedroom tax?
The ‘bedroom tax’ won't affect
you if you (or your partner) have
reached eligibility for Pension
Credit age. On 1 April 2013,
when the bedroom tax starts,
you will have reached this age if
you are aged 61 years and 5
months (male or female).
Successful Human Rights
challenge – recent
developments
There has been for some time a
similar ‘bedroom tax’ rule
operating in the private sector.
However, last year there was a
challenge against the
government based on human
rights, arguing that these rules
unlawfully discriminated against
disabled people. One prominent
case involved a family with two
disabled children with very
different care needs (one of
whom has spina bifida).
As a result, a Court of Appeal
judgment says that local
authorities should now use their
discretion to allow an extra
bedroom for children who are
unable to share because of their
severe disabilities.
However, there was no ruling on
the issues surrounding adapted
homes and this means that
many disabled adults may still
face cuts to their housing
benefit.
If you are affected, you may
be entitled to a discretionary
housing payment (DHP).
Housing/council tax benefit
departments have funds to give
discretionary housing payments
(DHPs) to people who qualify for
housing or council tax benefit,
but are having trouble paying
their rent or council tax. The
council decides who should be
given the payments. However,
when the money for the year
runs out, no more payments can
be made.
You usually have to fill in a
special claim form for a
discretionary housing payment
(DHP). Contact your local
council housing/council tax
benefit department for further
information.
If you want more detailed
information about the changes
from DLA to PIP, Disability
Rights UK has produced a
comprehensive guide to help
you through the claiming
process. The guide covers
information on:
• PIP rules
• Filling out claim forms, and
much more including what to
do if you’re not happy with
your decision.
You can download a copy from
the Disability Rights UK website,
or a photocopied version is £4
including P+P. To order a copy,
call Disability Rights UK on 020
7250 3222.

Talking with others who have
‘been there’ already, or who
day-to-day share the same
highs and lows, is often more
valuable than anything else.
This is why Shine has made its
Support Groups a priority, with
over 30 groups already
operating throughout England,
Wales and Northern Ireland.
The latest group to be formed
met in Nottingham for the first
time in early July. Seven
families, including two Mums,
two grandmothers, two Dads
and a couple expecting their
first baby, met at Nottingham’s
Beechdale Leisure Centre.
As well as social time, the
children were able to enjoy a
ball pool, soft play area, and
sensory room.
Shine’s Regional Manager,
David Isom, and Support and
Development Worker, Collette
Torrence, were on hand in case
families had any questions
(and there were many!) and to
join in the discussions.
It was a measure of how much
a Support Group was needed,
that families travelled from
Leicester, Loughborough and
Derbyshire, to join this first
meeting, and all resolved that
they wanted to meet again.
Discussions ranged from
experiences of pregnancy and
birth in support of the couple 26
weeks pregnant with their first
child, to difficulties in getting
holiday insurance for children
with hydrocephalus (Shine staff
reminded the group that Shine
has a list of ‘hydrocephalus-
friendly’ insurers). Almost
everyone in the group spoke
passionately about the
pressure they felt from medical
staff to terminate their
pregnancy when a neural tube
defect was diagnosed.
This new East Midlands
Support Group is just one
example of the ways in which
the Shine community can be
strengthened through Support
Groups. In other areas, groups
of people with more unusual
conditions meet. There is an
Intercranial Hypertension
Group that meets in the
Midlands, for example, and in
other areas groups of adults
meet to enjoy social activities
together.
One such example of this is
the Blue Blobbers, who meet
regularly in the London area to
develop friendships and visit
places of interest or try
activities such as bowling.
This group is supported by
volunteers, who help group
members that cannot travel
alone to get to the meeting
venue.
The group includes people with
a range of abilities with
everyone welcome, and group
members supporting each
other to overcome any
challenges that might affect
their taking part. The Blue
Blobbers are interested in
meeting up with other groups
within the UK (so please get in
touch with the Shine office if
you are interested in this) and
also hope to eventually go
away together for a few days.
Of course not all Support
Groups actually meet up.
Through social media such as
Support groups
8 www.shinecharity.org/events
Get together!
There is nothing quite like getting together with people who share your life experiences,
especially when those life experiences can make you feel a bit isolated at times.
The group includes people
with a range of abilities
with everyone welcome,
and group members
supporting each other to
overcome any challenges
that might affect their
taking part.

Support groups
wyoutube.com/ShineUKCharity 9
Facebook, other groups enjoy
communicating with each other
from the comfort of their own
homes. Shine50plus group is a
thriving online community of
individuals with both spina
bifida and hydrocephalus who
discuss a range of issues and
experiences.
For the younger age group,
there is the new ‘This is Me’
group for 11-14 year olds. This
group has discovered that
‘finding’ each other via their
closed Facebook page has
been of great interest and
reassurance. Many of the ‘This
is Me’ group speak of feeling
isolated in their own
environments, not knowing
anyone else with the disability
and of experiencing huge
challenges in their school lives.
Just talking to other young
people who are going through
similar experiences has been a
great boost to their confidence.
www.thisisme.org.uk
If you would like to know if
there is a Shine support group
near you, or would like to join
one of the groups mentioned
here, please contact
info@shinecharity.org.uk or call
T: 01733 555988
Likewise, if you are interested
in setting up your own Shine
Support Group we can put you
in contact with your nearest
Regional Office who will be
happy to help. Small-start up
grants may be available to help
you on your way.
Many of the ‘This is Me’ group speak of feeling isolated in
their own environments, not knowing anyone else with the
disability and of experiencing huge challenges in their
school lives.

Feature
10 C facebook.com/ShineUKCharity @SHINEUKCharity
Our challenges have
made us stronger...
Nikki and Luke are parents to
boys Finlay, 4, and Ethan, who
has just turned 1 and has spina
bifida and hydrocephalus.
It was at their 16-week scan
that the couple were told that
Nikki was carrying twins, and
not only this, but that the twins
were sharing a placenta.
They named the unborn twins
Elliot and Ethan. At 23 weeks,
Nikki underwent laser surgery
to split the placenta. Afterwards
it was presumed that Elliot had
survived, but that Ethan had
not made it through the
operation.
However, in what would be the
first of many extraordinary
developments, it emerged that
it was in fact Ethan, the baby
with spina bifida and
hydrocephalus, who had
survived. Shortly after this,
Nikki’s waters broke and it
looked to everyone involved
that Ethan too would lose his
fight for life.
However, as Nikki recalls:
‘Ethan didn’t come out! He
stayed there until 36 weeks,
12 weeks after my waters had
broken!’
At just 12 hours old Ethan was
taken away for a back closure
operation and after a week he
underwent an ETV procedure
to drain the excess fluid away
from his brain. This would form
the beginning of a journey
through many procedures,
including Ethan’s first shunt at
two weeks old, a shunt revision
at five weeks, and another
revision at six months, both
due to blockages.
Essential support
In addition to his
hydrocephalus, Ethan was also
undergoing various other
operations including turning his
feet to make them straight and
overcoming swallowing issues
related to his Chiari
malformation.
Far from being a child troubled
by his early experiences, Nikki
tells of Ethan rising above his
physical situation and charming
the staff at Liverpool’s Alder
Hey Hospital: ‘You’d find Ethan
flirting with the nurses on the
ward at their station; everyone
is drawn to his bright eyes and
charming ways!’
The delight that Ethan brings is
something to which Shine
Support and Development
Worker, Liz Potts, can testify, ‘It
is always great to meet with
Ethan and his family, they are a
great example of a family not
just overcoming the odds, but
going beyond this and using
their experience to benefit
others.’
Nikki is equally as
complementary of the support
she receives from Liz: ‘we really
would have been lost without
her, Liz is not just a Shine
worker, she is our friend and
she is now helping me to
support others facing similar
situations.’
As well as the support from the
hospital and Shine, Nikki says
Ethan and Finlay’s grandparents
have been invaluable. ‘I don’t
know where we’d be without
them, they have been with us
every step of the way to make
sure that we can get to every
hospital appointment and to
help us through the tough
times, especially those we had
At Shine we hear many extraordinary stories about our members. These stories inspire us and
make us ever more determined to provide the best services we can. We also know that
sharing some of these stories inspires and encourages many others within the Shine
community. Tom Scott went to hear one such story from Nikki and Luke Dalgarno
Liz is not just a
Shine worker,
she is our
friend and she
is now helping
me to support
others facing
similar
situations!

11
Feature
in the beginning when Ethan
was very young.’
However, it is Finlay, Ethan’s
four-year-old brother, whom
Nikki describes as ‘amazing, so
caring and gentle.’ Finlay is
keen for others to understand
what his brother is going
through and at school he
explains to others what spina.
Giving back
Not content with overcoming
some of life’s most difficult
challenges, the Dalgarno family
is also looking to give back.
Enter husband and father,
Luke, who works for the Davies
Management Group in Stoke.
Like many companies, Davies
Management Group offer their
staff the opportunity to
nominate a charity and then
hold a staff vote to select a
Charity of the Year. Nikki
describes the feeling of Shine
being chosen as
‘overwhelming’. ‘I don’t even
work there but they are so, so
supportive.’
The fundraising by Davies
Management Group is a great
example of how communities
unite to ensure that support
from Shine is always available.
Since starting in April this year
Luke’s employers have teamed
together to raise over £1000 for
Shine, a welcome and valuable
start to our partnership
together.
Powerful things happen when
families with experience of
spina bifida and hydrocephalus
start to help others, and Nikki is
now working with Liz Potts to
make sure that parents of
newborn babies with the
conditions get as much sound
advice as soon as possible.
Nikki knows what it is like to
struggle at the beginning and
wants to make sure that other
families get information and
support as soon as they can.
‘The information you’re given
when you’re pregnant is a joke.
It’s so hard at the beginning
and we want to be a part of
anything we can to help others.’
The future
Nikki reflects on some advice
she was once given when she
and Luke found out that Ethan
would have spina bifida and
hydrocephalus. ‘We were told
that the challenges of parenting
Ethan would make stronger or
weaker, it’s been hard, but it
has definitely made us
stronger – if we can take on
spina bifida and hydrocephalus,
we can take on anything!’

Membership
Membership numbers booming!
But who are these new people? At the last meeting
of Shine’s Adult Members Council, Shine staff
were asked find out more about the people who
choose to join us.
This is what we found:
We welcomed 1,115 disabled members. Not
everyone told us their age, but we know there
were 632 new child members and 524 new adult
members.
By far the most common disability among new
members was hydrocephalus alone, with 178 new
adult members and a significant 362 new child
members. For people with spina bifida without
hydrocephalus, the numbers were 74 adults and
54 children, whilst there were 113 new adult
members with SB/H and 99 children.
Among the rarer conditions we welcomed 20 new
adults and 5 children with Intracranial
Hypertension, while 26 adults joined who have
Normal Pressure Hydrocephalus.
The largest number of new members came from the
North and West Midlands areas with 407 new
members recorded. In Wales 117 new members
joined, and in Northern Ireland, a total of 128.
So, a huge variety of members from far and wide.
All coming with different needs and different things
to offer the Shine community. This variety tells us
0
100
200
300
400
500
600
700
Shine has welcomed 1,488 new members in the past two years, which is great news
because every new member strengthens our community.
I Children 632
I Adults 524
I Others 331
A B C
Children by Adult by Others
Disability Disability (professionals,
family members)
I Hydrocephalus 362 178 30
I Spina Bifida 58 74 23
I SBH 99 113 9
I SBO 20 37 7
I SBO with H 1 1
I IH 5 20 13
I NPH 26 3
I Dandy Walker Cyst 2 1
I Encephalocele 1
I No Condition 140 73 246A B C
Children and adults by disability

that we have to work hard to make sure all the
different sections of our community are being
considered and, in particular, we have to
recognise what a big proportion of our
membership is going to be people with
hydrocephalus alone.
Our Adult Members Council also expressed
concern that there might be many people and
families whose lives are affected by SB/H, who
have not heard of Shine, or who have not had the
opportunity to join. They asked that we increase
our efforts to reach these people and we have
resolved to do this.
Together readers can help with this, and it will
benefit us all if our community grows, as well as
offering more support to new people joining us. If
you know of people with SB/H who are not Shine
members, please encourage them to join – it’s
completely free. If you are a Shine Facebook user,
but haven’t yet joined up, please do so now! And if
you can think of places or networks where Shine
membership can be advertised, then please do let
us know – all suggestions welcome.
How to join Shine:
Phone Maureen Jobson on T: 01733 555988
E: Maureen.jobson@shinecharity.org.uk
What membership entitles you to:
• Free copy of Together magazine four times a
year – mail or on-line
• Free health/education advice
• Services of your local Support and
Development Worker
• Membership of Shine networks/groups
• Chance to vote for Shine’s Adult Members
• Council/Board and AGM resolutions
• Opportunity to be involved in Shine governing
and advisory bodies
• Lively social media groups.
Membership
Great minds!
Promoting mental wellbeing
A lifestyle event for adult
members with
hydrocephalus
Shine
T E
Friday 11th October 2013
depression?
anxiety and low mood!
Come along and join us!
Time: 10am-4pm
To include: presentation, discussion and
opportunities for meeting others.
There will be a charge of £10.00 per person to
include refreshments and a buffet lunch. The event is aimed at members over 16. No children, please.
Shine
Closing date
for applications
20th Sept 2013
Places are limited so
please register your
interest as soon as
possible

Benefits update
Universal Credit will be
introduced. It is a new single
benefit which will gradually
replace most 'means-tested
benefits' (and all tax credits)
paid to working-age people.
The new benefit, Universal
Credit, starts in the
Manchester and Cheshire
areas and will gradually be
rolled out nationally from
October 2013.
However, OT departments may
be based within the NHS or
your local council depending
on the area you live in. For
further information about how
to get it touch with them, ask
your GP, consultant or social
worker. Alternatively, Google
Occupational Therapy and your
area.
A new localised Council Tax
Reduction scheme comes into
force. For most of the UK this
will mean a real reduction in
support available for council
tax. However, for the initial
period 2013-14, most people in
Wales will have more or less
the same level of help as they
did under the former Council
Tax Benefit.
The Housing Benefit ‘bedroom
tax’ for social housing tenants
has been introduced. Housing
Benefit will be reduced for
working-age people who have
an extra bedroom under the
new rules.
The Benefit Cap starts in four
London local authority areas
and will be rolled out nationally
between 15th July and 30th
September 2013. Claimants of
working-age will have a
maximum limit on the total
amount of benefit they can get.
After a certain point, claimants
will have their housing benefit
(later housing credit as part of
Universal Credit) reduced.
Personal Independence
Payment (PIP) is a new
'working-age' benefit for people
who are very ill or disabled,
and who have significant
difficulties with mobility or need
help with their day-to-day living.
It will eventually replace all
working-age claims for
Disability Living Allowance.
For new applications, PIP was
rolled out nationally from June
2013. Those on DLA will
gradually be reassessed under
the new criteria for PIP from
October 2013. Lifetime award
claimants of DLA will not be
expected to be reassessed
until 2015.
The ‘discretionary’ parts of the
Social Fund will also be
abolished, including
Community Care grants and
Crisis Loans. In the devolved
parts of the UK, there will be
new ‘discretionary’ funds which
will provide grants and other
help – but these will be limited;
elsewhere in England there will
be local schemes operated by
local authorities. The
‘discretionary’ funds focus help
on those who are most
seriously vulnerable or in crisis.
Budgeting loans will gradually
be replaced by a similar
‘budgeting advances’ system
as claimants move onto
Universal Credit.
What to do now?
If you are concerned and would
like to know how these
changes may affect you or your
family, please contact our team
of Support and Development
Workers through Shine’s
First Point of Contact on
01733 555988.
Times they are a-changin’
– what’s happening with welfare in your area in 2013
There are a number of changes which took effect from April 2013 onwards.
For a quick guide to these changes, read on…
Claimants of working-age
will have a maximum limit
on the total amount of
benefit they can get. After
a certain point, claimants
will have their housing
benefit (later housing
credit as part of Universal
Credit) reduced.
14 www.shinecharity.org.uk/how-we-help/welfarereforms

Housing adaptations
Housing Adaptations – some guidelines
by Emma Enfield, Shine Occupational Therapist
Everybody should have a Community
Occupational Therapist (OT) who is responsible
for community assessments regarding aids and
adaptations that you might need at home. Most
OT departments will accept self-referrals, so you
don’t need to go via your GP. However, OT
departments may be based within the NHS or
your local council depending on the area you live
in. For further information about how to get it touch
with them, ask your GP, consultant or social
worker. Alternatively, Google Occupational
Therapy and your area.
There is usually a long wait for an assessment.
Remember to tell them if you think you need to be
seen urgently. They will work to priority guidelines
which you can ask to see but, ultimately, you
might have to wait.
When the OT visits they follow quite strict
guidelines on what they can and can’t recommend
for you. You are entitled to see a copy of their
guidelines and the priorities they use to make their
decisions. It is usual for them to have to carry out
an assessment with equipment before they
suggest any adaptations to your house. An
example of this might be that they will give you
bathing equipment to try before they will
recommend a graded floor shower. If you can’t
manage and don’t think it will meet your long-term
needs, tell them why.
If you both agree that adaptations are the answer,
then there are a few routes that might have to be
followed. Some OT departments insist the OT
writes a report which is then presented at an OT
adaptations panel. They will either approve it, or
write to let you know it hasn’t been successful. If
this happens and you don’t agree, ask them to
speak to you about this, or they might close your
case down.
If it’s agreed, then the OT will send the report with
what you need to either the housing association to
complete the works, your landlord, or the local
council. Sometimes they just agree to do the
works as soon as they get the report. But often
you need to apply for a grant. For more detail on
applying for a grant, please see:
www.shinecharity.org.uk.
Although it’s all quite long-winded, be assured that
there are literally thousands of housing
adaptations completed each year so they DO
happen. If you need any further advice, please
email: E: emma.enfield@shinecharity.org.uk.
Whether you own your home, rent it from the council, housing association, or private landlord,
you are entitled to have an assessment of your needs.

16 C facebook.com/active4shine
Feature
When we choose the five
successful applicants we have
to consider their connection to
the charity, their experience as
fundraisers, and their plans for
raising money for Shine by
completing the world’s most
famous marathon.
Taking her inspiration from her
daughter Lucy-Rose, who has
both spina bifida and
hydrocephalus, Hannah
Whitlock ran the London
Marathon for Shine last April
and raised an amazing £4800!
Not content with breaking the
minimum sponsorship by
£2300, Hannah then recruited
her brother, Aaron, to apply for
the 2014 race to ensure that
next April Team Whitlock will
generate even more donations
to Shine.
The duo convinced the team at
Shine that they could repeat
Hannah’s success through a
combination of their energy
and endless ideas for creating
awareness about Shine and
inspiring others to sponsor their
fundraising ventures.
Hannah spoke to Together
about Lucy-Rose and what it is
that motivates her to run mile
after mile for Shine.
Hannah discovered at her 20-
week scan that she was having
a baby with spina bifida and
hydrocephalus. Though she
was offered a termination, and
despite not being fully aware
about what a life with spina
bifida and hydrocephalus
would be like for her daughter,
Hannah took the decision to
continue the pregnancy.
And it has been the best
decision she has ever made.
Lucy-Rose has fought through
surgery and multiple shunt
revisions to become an
incredibly bright, sweet young
girl. Hannah is clearly very
proud and, though the
challenges are pretty constant,
she says, ‘Lucy-Rose is
amazing, she’s just like other
girls her age, she loves her
cats, playing the piano,
cooking, and she’s a huge
Taylor Swift fan!
Fundraising – it’s about having
your WHITS about you!
Introducing Team Whitlock
Every year the most popular charity-place running race applied for here at Shine is the Virgin
Active London Marathon.
Lucy-Rose is amazing, she’s just like
other girls her age, she loves her cats,
playing the piano, cooking, and she’s a
huge Taylor Swift fan!

Feature
Lucy Rose continues to have issues
relating to her bladder and bowel, not
that you’d know it, she just gets on with
life and never makes a fuss!’
Lucy-Rose is keen to speak openly about
what life is like as a 9 year-old with spina
bifida and hydrocephalus, and this has
led to her bravely standing before her
peers at primary school and explaining
what it means to have to manage
continence and look after her shunt.
It is so that children like Lucy-Rose can
be supported with everything they need,
that Hannah and Aaron are embarking on
a year of fundraising for Shine. We wish
them every success and can’t wait to see
them cross the finish-line next April!
Words and photos by Tom Scott

Gobi’s Gossip
In my last set of ramblings, I
mentioned my “Big Op” was
looming. With Together
publication timescales as they
are and at the time writing this,
I’ve now had my Mitrofanoff
Revision. I’m still recovering
from the surgery and am now
on the road to recovery. But
before I go into more detail
about my experience in
hospital, let me start by
updating you with events
leading up to my admission.
Due to badminton tournaments
and planning for Rise and
Shine, the months leading up
to surgery were unbelievably
busy. Preparations were made
to ensure things were
organised and in place for
handover to the rest of the
Shine team before I was out of
action. This didn’t just apply for
my Shine duties, but also in my
personal life where I had to
make sure my own admin,
banking and other paperwork
were all in order before going
on sick leave.
Doing all of this was a huge
task, but it was a necessity in
ensuring that I had fewer things
to worry about during my
recovery. It’s fair to say things
were non-stop, but it was great
to get my teeth into Rise and
Shine, and really focus my
attention on finalising
exhibitors, and also securing a
guest speaker, former
International Wheelchair Tennis
player, Jayant Mistry.
Rise and Shine has passed by
now, but I know that many of
you attended, and had an
enjoyable and worthwhile
experience at Stoke
Mandeville.
With a hectic schedule and lots
of travelling to Shine events
and Badminton tournaments, it
was great to take some time
out for Shine duties of a local
nature, just days before I went
for my operation.
I met up with Shine members,
the Sivashankar family, who
live in my home town of
Stevenage. They very kindly
made a donation to Shine, and
it was great to go to their home
and meet with them,
particularly 7 year old
Subathran, who has
hydrocephalus and cerebral
palsy. Subathran, who is
always full of smiles, posed
with a Shine T-Shirt, along with
Benny Bear, in their specially
adapted home. His parents are
proud and pleased with his
happy nature, despite having
various difficulties with his
Gobi’s Gossip
Hello everyone! Time has whizzed past once again, and we find ourselves already in the latter
stages of summer.
Subathran, who is
always full of
smiles, posed
with a Shine T-
Shirt, along with
Benny Bear, in
their specially
adapted home.

condition. It was a lovely
afternoon and an education for
me too with regards to the
extent of adaptations that can
be made to a family home to
accommodate a physical
disability from a young age.
With the lead up to my
operation being so busy, at
times, it was all a bit of a blur,
but I very quickly found myself
sitting at home the night before
my surgery, looking ahead at
what I’d be facing. Having been
under the knife on numerous
occasions, I tried my best to
ensure that I was physically
and mentally ready for what lay
ahead. However, it was still an
unpleasant feeling to be waiting
for the inevitable.
Regardless of my preparation,
the surgery was out of my
hands and was somewhat
difficult for my consultant.
Surgery took almost 6 hours
before I finally got sent to
intensive care.
I felt very sore and groggy, but
I could now concentrate on
getting the recovery phase
underway. Unfortunately, my
recovery plans didn’t quite
happen in the timescale I was
hoping for. From the
moment I came out
of theatre I had a
number of setbacks
that proved to be
uncomfortable, and
delayed the
progress of my
recovery. It started
with having an
incorrectly
inserted Nasal
Gastric tube (which had to be
removed and then re-inserted
in ICU), catheters that didn’t
drain, my bowels and stomach
going into shock, upset
stomach for 10 days, severe
dehydration (with some
delirium), thrush in my mouth
(caused by antibiotics and
dehydration), and finally a
cavity appearing in my wound
needing daily dressing, even
when I came home after my 3
week stay. Needless to say, an
unpleasant time in hospital, but
I should point out, it was
definitely just one of those
things and not caused by
negligence, or poor healthcare.
Surgery, in the main is ‘routine’
and most patients have little or
no issues in their recovery. I’ve
been one of those patients in
the past, however, this time
it wasn’t to be.
It is never a
great thing to experience and
there really is no rhyme or
reason why it happens. It can
happen to the best of us, and is
one of life’s hurdles that have
to be overcome. However,
keeping yourself as fit as
possible can help with
recovery, and also allow your
body to handle complications
far better too.
At this moment, I still have a
long way to go to complete my
recovery, but I very much hope
that by the time you’re reading
this, I’m back to my Shine
duties and meeting all you
members once again at various
events and visits around the
country.
I hope that everyone is having
a great Summer and I look
forward to being back with you
in the next edition as I head
into my 3rd Year as
Membership Development
Officer!
Gobi’s Gossip
From the moment I came out of theatre
I had a number of setbacks that proved
to be uncomfortable, and delayed the
progress of my recovery.
A future Shine superstar…

Think about it...
Many people with hydrocephalus, or open spina
bifida, have differences in the way their brain
processes information coming at them from the
environment, and even their own internal
thoughts, because of the way their brain
developed from the beginning.
As the brain is developing in the womb, it’s
important that certain chemicals can flow freely
within the cerebro spinal fluid (CSF). This is
because these chemicals help the brain cells to
organise into tidy layers. If the CSF is trapped,
for example by a blockage, or because it is
flowing in the wrong direction (which happens in
spina bifida) then the layers of cells in the brain
can be thinner, and untidily organised. When the
brain is formed like this, rather than in the usual
way, then it can affect the way it operates, which
is why people with SB/H cannot always do all the
usual things in the same way as other people.
The front part of the brain, which helps us
organise ourselves, is often affected. This part of
the brain also helps us check our behaviour or
our performance against what we set out to do
or what others expect us to do. The front of the
brain also helps us remember information long
enough to use it, to plan into the future and to
imagine what is going to happen.
When this is affected, you may find it difficult to
imagine things being different to how they are now. You might find your own view of your
strengths and weaknesses very different to that
of your family and friends; for example, you may
find yourself disagreeing with family on applying
for jobs or courses you think will be right for
you. Some research by the University of
Westminster suggests that people with
hydrocephalus may not always be as aware
of the effects of their condition, as people
close to them.
The way that spina bifida and/or hydrocephalus, can affect how you think and act can make a
much bigger difference to the quality of your life than your physical disabilities. Gill Yaz, Health
Development Manager explains...
When the brain is formed like this, rather
than in the usual way, then it can affect the
way it operates which is why people with
SB/H cannot always do all the usual things
in the same way as other people.
Health
20 C facebook.com/Shine.Gill.Yaz
For parents of children with
spina bifida or hydrocephalus,
it is advisable to start your
child off from a young age
by helping them to organise
their belongings.

Professor
Bayston
comments on
the account
of a shunt
infection
written by
James
Weavin in the last issue
of Together.
“James’ problem was a
pseudocyst that formed
at the lower end of his
ventriculoperitoneal
(VP) shunt, causing a
shunt blockage. Such
cysts are usually due to
infection, as in this
case. In the abdomen
there is a membrane whose
job is to seal off any irritant or
infection and to prevent it from
spreading. As the bacteria
travel down the shunt catheter
into the abdomen, this
membrane wraps up the
bottom of the catheter to
contain the infection, and in
so doing it forms a cyst. CSF
can not now drain freely from
the shunt.
It is therefore important to
realise that VP shunt
infections can appear as shunt
blockage, with or without
stomach symptoms. A simple
blood test and an
ultrasound
examination, as
was eventually
used here, will help
to diagnose the
condition. One
important aspect of
James’ account is
that GPs need to
know that anyone
with a VP shunt
who experiences stomach
problems such as these, over
a period of more than a week
or so, might have a shunt
problem and that this needs to
be top of the list before other
diagnoses, such as irritable
bowel syndrome or food
allergy are considered.”
VP shunts and
stomach problems
It is therefore
important to
realise that VP
shunt infections
can appear as
shunt blockage,
with or without
stomach
symptoms
Health
www.shinecharity.org.uk/hydrocephalus 21
This is very important
when planning to live
independently. You may
have become used to
prompting from friends or
family to remember to look
after yourself, like
catheterising, or taking
medication. It is helpful to
experiment with different
ways to remind yourself,
without someone else being
there. Electronic organisers
and phone apps have been
found to help some people
with memory or organisation
problems. For example, you
can programme in an extra
reminder a few minutes after
the first, in case you forget.
Getting into a routine, and
using a checklist can all
help; however you might
need support until these
become a habit.
For parents of children with
spina bifida or
hydrocephalus, it is
advisable to start your child
off from a young age by
helping them to organise
their belongings.
Encouraging them to put
things in their correct place
means they don’t need to
‘work out’ where lost items
might be. For school, help
them colour code their
timetable and equipment for
that lesson; for example, a
red sticker on maths books
and equipment, and a red
sticker on the timetable, with
a checklist for each day.
Don’t leave it till the tricky
teen years to think about
independence; build up to
taking responsibility by
starting early.
Roger Bayston was the first recipient of the ASBAH
national Research Fellowship in 1974, which allowed him
to extend his studies of CSF shunt infections. Since then
he has published over 120 research papers, 14 textbook
chapters, and one textbook on shunt infections. He has
served on the Medical Advisory Committee of Shine for
several years, and is now Chairman; he is also a Shine
Board Member. He has been a member of the International
Society for Research into Hydrocephalus and Spina Bifida
since 1975, and was made an Honorary Member in
recognition of his work in the field. He served as President
until last year. He is now Professor of Surgical Infection at
the University of Nottingham School of Medicine.

Go Folic!
22 www.gofolic.co.uk C facebook.com/ukgofolic twitter@gofolicuk
Get a load of this!by Martine Austin, Shine Health Campaigns Officer
Now that the dust has settled after all the activity and excitement surrounding our first Go Folic
Awareness Day, it’s time to get cracking on some new projects.
The next task is to increase the
range (and accessibility) of our
Go Folic! information, to help
ensure that the message
reaches even more women.
Over the past couple of years
we have developed a great
social media following, along
with a steadily increasing flow
of visitors to our website.
Online communications have
proved a very effective method
of sharing our information, and
so, with an ever increasing
number of people accessing
the internet with mobile
devices, we felt that the time
had come to update our
existing website to make it both
more accessible and more
‘mobile device friendly’. The
new look website will also see
the launch of some attractive
awareness – raising
merchandise, including eye-
catching wristbands (in the Go
Folic! pink and green colours),
and pink GF polo shirts! Keep a
lookout on the website,
Facebook and Twitter for news
of the launch...
Go Folic! leaflets are still
proving a real hit, with
many of you kindly helping
to distribute them via your
local GPs surgeries,
pharmacies, colleges and
community groups, which
is a fantastic help. I always
carry a ready supply of
leaflets with me wherever I
go (yes, sadly I do stalk
pharmacists in my spare
time), but it’s great to be
able to walk in and see
some already on display.
Our latest addition, a Welsh
language version, is now
available to download from the
website (including all the latest
guidance about B12), shortly to
be followed by a Polish version,
with further translations in the
pipeline. If you know of anyone
with fluent bilingual language
skills who would be interested
in donating some time to help
with translating any Go Folic! or
Shine materials, please do get
in touch with us. Similarly, if
you know of a particular need
for materials in a specific
language in your area, please
let us know. It’s so important
that we make our information
accessible to as many people
as possible.
And finally... a huge
‘Congratulations’ to Go Folic!
poster boy James Fox on
winning a gold medal at the
Rowing World Cup this month
as part of the para-mixed
coxed 4; his first international
medal in senior competition!
Keep a lookout for us
on the website,
Facebook and Twitter

Wales Cymru update...
Benny Bear made
an appearance for
a birthday tea at
Shine Cymru’s Fun
Day at Folly Farm
in West Wales at
the end of June. 7
families from across
South and West
Wales came along, and spent
the day exploring the farm, going on tractor
rides, playing in the Pirate’s Adventure
area, visiting the new “Folly Zoo” and
meeting small farm animals in “Cwtch
Corner” (‘cwtch’ is Welsh for cuddle).
Several families swapped details and
agreed to meet up again in the near future
to support each other, and share
information and experiences.
We hope to make this an annual event and
will be planning to meet up on the same
weekend next year (probably Sunday 22
June), so pop this date in your diary and
look out for more information nearer
the time.
Ladies that Lunch in Cardiff
Shine Cymru is setting up a ‘Ladies that Lunch’
group in Cardiff for our lady members. If anyone is
interested in coming along, then please contact
Sian Prince on
E: sian.prince@shinecharity.org.uk or
T: 02920 813847 to find out more.
We’re also keen to set up groups in other parts of
Wales for other members, so feel free to contact
us to find out what we’re planning!
Susie Sunshine, Llandudno
Val Conway has been a Shine Cymru fundraiser
for the past 40 years. She is an active local
fundraiser involved with a few charities. However,
Shine Cymru holds a special place in her heart
as her daughter Susie was born with spina bifida
and hydrocephalus. Sadly, Susie passed away in
2001, which is when Val began organising the
Susie Sunshine Walks in her home town of
Llandudno. Now in its 11th year, the annual event
has raised thousands of pounds, helping many
Shine members and their families.
Thank you, Val – and a happy belated birthday
for June!
Fun at
Folly Farm
Thank you!
A big thank you to our member Paul Houlton
who wrote to Langland Bay Golf Club in
May, and asked them to support Shine.
They donated a signed Osprey shirt which
raised a whopping £127 for Shine Cymru.
Diolch yn fawr, Paul!
C facebook.com/shinecymru 23
Shine Cymru News

Jo Jingles
We met for ‘afternoon tea’ at the
Killyhevlin Hotel, Enniskillen,
last week, and had members
from Co. Tyrone and Co.
Fermanagh attending. We
shared the dining room with a
number of International media
personnel getting ready to take
their leave after the G8 Summit
at the nearby Lough Erne
Resort. This G8 Summit has
earned its place as the ‘most
peaceful’ on record, and it
showcased the beauty of
Fermanagh and the warmth and
generosity of its people.
At an idyllic setting by the lakes,
we enjoyed tea and spent a
relaxing afternoon catching up
with each other, meeting new
friends, and planning together
some future events of mutual
interest.
Mary McCullagh who attended
the event said:
‘The event was a recipe for
good girlie chit-chat. The
conversation was varied,
interesting and delightfully
aimless, and was fuelled by
scrumptious sandwiches,
scones, and pastries; weight
watchers exit left!’
We look forward to meeting up
together again, and inviting new
members to enjoy these social
events, bringing together adult
members from Fermanagh and
Tyrone. Please do get in touch
with Sandra Campbell
(T: 02871 354939) if you
would like to join us.
News from
Enniskillen
We are really enjoying the Music & Movement sessions with
Maureen & Jo at Jo Jingles in Enniskillen.
Our children have
been brilliant in
singing, clapping
and interacting with
the songs and
games. In each
session we are
learning new songs
and rhymes and
having a great time
with the props. The
huge parachute and
bubble machine are
particularly popular!
Maureen is very
kind in providing a
picnic for the
children and
refreshments for the
adults after the
session. Our young
members are very
good at helping
Maureen to organise
the picnic too!
Florencecourt
Family Fun Day:
Invitations on their
way for an event on
4th August 2013,
where we are
planning a Shine
Family Picnic
1pm – 4pm.
Shine Northern Ireland News
24 C facebook.com/shinenorthernireland

I started the party season by
going to Vinnie Robyn’s Tea
Party. Vinnie decided to raise
some money for Shine, and
chose a lovely way of doing it by
inviting all her friends and family
to a tea party with me! We had
so much fun chatting and
munching on cakes, and Vinnie
raised £458 for Shine. I think this
is my new favourite fundraising
idea. Maybe you could try it with
your friends? But don’t forget to
invite me! (For more information
go to www.bennysbirthday.co.uk)
I was very lucky to be invited by
Lynn (Shine50plus
Administrator) and Pete Hart to
go with them to Glastonbury! I
had the best time, as you can
see from the pictures! My
favourite bit was seeing the
Arctic Monkeys, they were very
good, but not like any monkeys
I’ve seen in the wild! Thank you
Lynn and Pete, it was a pleasure
joining you!
By the time this is published, I
will have been to the London
Triathlon with Clara and Hannah.
I’m really looking forward to
cheering our winners in yellow
across the line! They’re all
working hard training and
fundraising, so good luck
everyone, the Shine community
can barely believe how great
you are!
Lastly, please check out my
blog, as the sun has finally got
its hat on and I have put loads of
tips for keeping safe in the sun.
You can also buy some Shades
for Shine for added sun
protection, and they’ll make you
look very shiny and cool! You
get your shades from here
www.shinecharity.org.uk/shop.
Summer’s here!and I have been partying with some of my Benny friends!
C facebook.com/ShineBennyBear 25
Benny Bear
Can you spot Benny?

SAMC
Hello everyone and welcome
to summer. So let’s update
you with all the latest news
from your SAMC, including
details of our first meeting
held on Saturday 21st April.
mike.bergin@shinecharity.org.uk
Induction Day
The new SAMC had an
induction day at Shine Head
Office on Friday 19th April; we
were joined by CEO Jackie
Bland, and several staff
throughout the day. It was a
good chance for the new people
to find out how everything is
carried out on a daily basis at
Shine Head Offices.
Developments
At our meeting on Saturday 20th
April, we were again joined by
Jackie Bland, and Development
Manager, David lsom. Apologies
were received from Liz Potts,
Amar Dugal, and by
Membership Officer, Gobi
Rangnathan. Also joining for
their first meeting were Heather
Doughty and Jason MerriII, who
make up the new SAMC.
SAMC Membership Evaluation
The SAMC focused on key
objectives within Shine’s
membership scheme.
1. It was agreed that we need a
further ‘membership drive’.
Centres for Independent Living
and Wheelchair assessment
centres were suggested; more
general publicity to be
investigated.
2. When promoting the benefits
of membership, we should
emphasise that it is free, and it
isn’t just for when people are in
trouble. Moreover, that peer
support is a big part of the future.
3. There will be a ‘membership’
article in (this) Together
Magazine discussing the issue
of increasing members. It was
also noted that last year, 2012,
780 new members joined Shine,
bringing the membership to
10,800. The aim for the Big
Lottery project was to have at
least 10,000 members by 2016,
so as you can see this has
already been achieved.
NHS Specialised
Commissioning for Spina
Bifida
Jackie Bland has been tackling
the issue of national specialised
commissioning for spina bifida
(or rather lack of it), for some
time now. Unfortunately, with
little success due to a poor
response from the powers that
be within the NHS specialised
commissioning teams.
Therefore, what each member of
the SAMC is doing is sending a
template letter to his or her local
MP, drawing attention to this
issue. l will update everyone in
the next issue of how many MPs
actually get back to each of us.
Chair/Vice Chair
A new Chair and Vice Chair will
be elected soon to cover the
next 3 years. Any SAMC person
can put themselves forward.
Applications are assessed
against set criteria and if
necessary put forward to a vote.
Get in touch!
Remember your SAMC is here
for you! So if there is anything
we can help with or maybe you
just want to ask a question, you
only have to get in touch and we
will do our upmost for everyone.
You can contact me via the
email address below.
Mike Bergin SAMC
Communications Officer.
SAMC News
26 www.shinecharity.org.uk/samc
The Editor would like to apologise to
Mike Bergin for incorrectly stating in
a previous issue that he has two
children. Mike has four children, we
are sorry for any hurt or confusion
caused by this error.

Events
Great news! We have so many
great events happening
throughout the Shine community
that we don’t have enough space
to write about them all in Together.
To find out the date and time of your
next support group or Shine
social function, please contact Shine Head
Office on T: 01733 555988
E: info@shinecharity.org.uk or visit the
events page of the website
shinecharity.org.uk/events
Events
Then we have a competition for you!
Shine is teaming up with Wheelie Chix, to
give two of our female members a stylist
make-over! The prize will include an outfit,
a hair and make-up session, and finish
with a glamorous photo shoot!
The entry requirements are very simple.
To enter you must be able to travel to
Peterborough for the shoot (advance
notice will be given to allow for travel
arrangements), be a Shine member, and
be a lady! All you need to do is email
louise.tyler@shinecharity.org.uk with
your details and then we will draw two
names from the hat.
For further information about buying from
Wheelie Chix go to www.wheeliechix-
chic.com/
Don’t despair gents! We will hopefully be
running some styling competitions for you
in the near future.
Wheelie Chix
Competition
Calling all
female
members! Do
you use a
wheelchair or
spend long
periods sitting
due to mobility
issues? Does
this make it hard
for you to find
clothes that fit
comfortably?

Last year you raised £10,000 through Wear
Yellow and Shine events across the country.
This year we want to beat this amazing
achievement with even more people wearing
yellow for the day.
Spina bifida and Hydrocephalus Awareness
Week is an annual opportunity to raise the
profile of the conditions which affect tens of
thousands of people in England, Wales and
Northern Ireland.
Schools and workplaces often book these
charity days in advance so please speak
with your contacts as soon as possible about
signing up for this year’s event!
You can hold your event at any time, one
great idea might be to use the final friday of
the school term – Friday 25th October – as
the day for Wear Yellow and Shine.
Spina Bifida and
Hydrocephalus
Awareness Week
2013
19th - 26th October 2013
To get your Wear Yellow and Shine supporters pack, or to find our more, please call
Hannah Wysocki on 01733 421351 or email hannah.wysocki@shinecharity.org.uk
shinecharity.org.uk/wyas
Turn your school, workplace, or local group YELLOW this October with Wear
Yellow and Shine for the next Spina Bifida and Hydrocephalus Awareness Week!

Together issue 10

More Related Content

What's hot (20)

Viewers also liked (20)

Similar to Together issue 10 (20)

Recently uploaded (20)

Together issue 10