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Issue 12
Greg widens
horizons at
ebay
New Health Hub
plan launched
Challenging the
Chairman
Grand Prize
Draw 2014
Lets raise over 15,000... HUKShine!
Loads of
great prizes
1st Prize:
1,000 cash
Purchase tickets
yourself or encourage
others to buy
theirs online
5th Prize:P7VKZO\e
1!
Step 1:
Step 2:
Step 3:
Step 4:
=PZP[^^^ZOPULJOHYP[`VYN\RWYPaLKYH^
-PSSPU[OLVUSPULMVYT
>HP[MVY`V\Y[PJRL[Z[VHYYP]L
-PUKV\[PM`V\YLH^PUULYVU[O4H`
Welcome to Together
CONTENTS
P4
News
P7
Shine40Plus
P9
P12
Shine Cymru
P14
Benefits update
P16
NPH FAQ
P18
P21
Fundraising
P23
Benny Bear
P25
A packed 2014
The start of the year may seem a
distant memory, but we are still very
excited about 2014!
In this, our 12th
issue, you will find
news about our
new Shine App
download it to
access all of
Shine at the tap
of a button!
We have a great
feature on the life
of Shine Board
member, Greg
Smith, as well as
all the latest
gossip from Gobi,
and health
information from
Gill Yaz.
Fancy that!
News
To download the app please visit one of the following APP stores
Play: www.bit.ly/ShineAndroidApp, Amazon: www.bit.ly/AmazonAndroid or
Opera: www.bit.ly/OperaShineApp and remember to leave comments on the pages, so that
we can use your suggestions to improve the App!
Congratulations to the
Bullen Prize Draw winners!
Shines corporate partners, Bullen Healthcare,
recently ran a prize draw exclusively for Shine
members. They provided some fantastic prizes:
first prize was 1,000 of High Street Shopping
Vouchers, 2nd prize was 500 of High Street
Shopping Vouchers, 3rd prize was an iPad 2, and
five lucky runners-up received iPod Shuffles.
Dont forget that every time you place an
order with Bullen Healthcare, 5% of the
order value is donated to Shine full details
can be found in the insert you received
with your copy of Together magazine.
www.shinecharity.org.uk
News
It never rains
but it pours
In recent months the news has been full of stories about large areas of the UK being flooded.
This is terribly upsetting for anyone, but when you are living with a disability it can make the
experience even more traumatic.
One of our members, Shelia Rodgers,
experienced this first-hand on 5th December last
year. At 4am she received an automated call from
the environment agency giving a flood warning. At
this point Shelia thought it was just precautionary
as she lives quite a way from the sea.
C facebook.com/ShineUKCharity
@SHINEUKCharity
Specialised Commissioning
He has yet to
explain why
spinal cord injury
is treated so
differently, i.e. if
you acquire a
spinal injury you
get a better
service than if
you are born
with one.
Sir David argues that if spina
bifida were recognised as a
condition which merited a
specialised service then all
other neurological conditions
would also make the same
request (we are not sure what
evidence he has for this). He
has yet to explain why spinal
Do we have your
correct email address?
To bring you the latest news, or to deliver Together by
email, we need your most up-to-date email address. You
can send this to us at E: info@shinecharity.org.uk
www.shinecharity.org.uk/specialisedcommissioning
Shine40plus
New developments
www.shinecharity.org.uk/chairmanschallenge
Health suite
plans
w youtube.com/ShineUKCharity 9
Shine interview
10
www.shinecharity.org.uk
Shine interview
C facebook.com/ShineUKCharity
@SHINEUKCharity
11
Rugby fever!
There was great excitement in
the Wales camp as Shine
Cymru members of all ages
went along to see the Wales
Rugby team train at the
Millennium Stadium in Cardiff the
day before the International
against Argentina. In a stadium
that holds 72,000 we were part of
a privileged crowd who met the
squad, collected autographs, and
had pictures taken providing
memories that will last a lifetime.
Everyone had a fantastic day
and, as any Welsh rugby fan will
tell you, meeting the team really
is as good as it gets!
Get involved
join the North
Wales Friends
of Shine Cymru
The North Wales Friends of
Shine Cymru meet every couple
of months in Llandudno, and
focus on raising awareness of
hydrocephalus and spina bifida,
organising fundraising activities,
and having fun.
We alternate meetings with the
more formal planning for
fundraising activities and social
get-togethers.
Both are co-ordinated by Bryn
Roberts, the North Wales
Support and Development
Worker, so if you are interested
in getting involved, contact Bryn
on T: 01248 724944 or E:
bryn.roberts@shinecharity.org.uk
Bryn is also on Facebook if
youd rather connect with him
that way
facebook.com/Shine.Bryn.Roberts
Thank you!
Thank you!
Putting the spotlight on our
fundraisers in Wales
Some of our services would not
exist without the wonderful
fundraising support from our
members, their friends and
families, so here is a big
THANK YOU from us to you
Ysgol Dafydd Llwyd raised a
fantastic 300 at their Wear
Yellow and Shine day.
12 C facebook.com/shinecymru
Shine NI update
Congratulations!
The Shine NI Award was presented to Michael McKernan.
Michael has been associated with Shine for many years. He is
a member of the Portadown and District Local Association, the
Northern Ireland Association, and is the Northern Ireland
representative on the Board of Shine. Pictured is Michael, his
wife Margaret, SDW Janet Davidson, and children from the
local group. Congratulations Michael and thank you for all of
your hard work over the years.
C facebook.com/ShineNI 13
Benefits update
Benefits update
New appeals process for benefits awards.
Until recently, if you were
unhappy with a decision made
by the Department for Work and
Pensions (DWP) about your
benefits award, you could
appeal. The process has now
changed.
Instead of appealing, you first
need to ask for a mandatory
reconsideration. This simply
means that you ask DWP to
look at the decision again.
You will no longer have the
option of going straight to an
appeal.
Benefits application
Decision unfavourable?
Mandatory reconsideration
Reconsideration unsuccessful?
Go to appeal
You have one month to request
reconsideration, beginning on
the day after the date on your
decision letter.
Shine recommends that you put
any request for mandatory
reconsideration in writing and
keep a copy of the letter you
send.
Do not miss the deadline for
reconsideration as it is a
required step on the way to
making an appeal. You will not
be able to make an appeal if the
decision-maker refuses to
14
www.shinecharity.org.uk/Benefits
Lets connect
Lets connect!
Here at Shine we are always trying to think up new ways of connecting our members. We
realise that often the best advice and support comes from those who can truly understand the
challenges you face your fellow members.
A Google Hangout is a group video call. The first
One of the easiest and most effective ways to
connect with others is to use social media. Darren Hangouts have proved very successful with topics
Fower, Shines Social Media Development Officer, such as spina bifida occulta and shunt issues
has recently set up a variety of
being discussed. Whilst there is a
Facebook support groups; some
definite topic for each talk, Robin
cover a geographic area,
comments that because these
A Google
whereas others focus on a
are group discussions, we may
Hangout
is
a
particular condition.
start off talking about one topic,
but this will bring up all sorts of
group
video
The best way to find a group is to
questions, so we have covered
call. The first
search Shine + your location or
bladder and bowel issues,
your condition, for example
and lots more as the
Hangouts have mobility
Shine Nottinghamshire.
conversations have progressed.
If you cannot find a group that
suits your needs or you have any
questions about Facebook
support groups, you can contact
Darren by leaving a comment on
Shines Facebook page
www.facebook.com/
shinecharityuk or via email E:
darren.fower@shinecharity.org.uk
proved very
successful with
topics such as
spina bifida
occulta and
shunt issues
being discussed.
C facebook.com/ShineUKCharity
@SHINEUKCharity
15
16
Go Folic!
Flour power!
After a busy year with Go Folic!, we ended on a real high with the topic of flour fortification being
brought to the fore in the House of Lords, having also been championed by the British Medical
Association earlier in 2013.
Way back in December 2006,
The UK Scientific Advisory
Committee on Nutrition (SACN)
recommended mandatory
fortification of flour with folic acid
in order to reduce the number of
pregnancies affected by Neural
Tube Defects (NTDs) like spina
bifida. However, since then,
successive Governments have
made no steps towards
adopting this proven primary
prevention strategy, despite
fortification having been safely
(and successfully) implemented
in 79 countries across the globe
(including the USA and Canada
who have been fortifying since
1998) with reported reductions
in NTD-affected pregnancies
varying from 26-50%.
Lord Rooker (who is also the exChairman of the Food
Standards Agency) shared our
frustration at the Governments
lack of action (both in terms of
fortification and education
regarding taking folic acid
supplements) and has made it a
personal mission to spur them
into action. The debate that he
initiated in the Lords received
some passionate and highprofile support, most notably
from Baroness Tanni GreyThompson (who very kindly
participated in the debate) along
with the Countess of Marr, Lord
Turnberg and Lord Hunt. Since
the debate, we have been
involved in further
communications with the Under
The debate
(that he)
initiated in
the Lords
received some
passionate and
high profile
support, most
notably from
Baroness
Tanni GreyThompson...
C facebook.com/GoFolicUK 17
Shine Health
@SHINEUKCharity
Shine Health
Schools
For young children, I get asked
whether the whole school
should be told about their
incontinence so they
understand. The answer to this
is no. Concentrate on getting
their bladder and bowel
management as good as it can
be, as young as possible. Dont
be fobbed off with well do
something later from your
healthcare professionals.
Children with bowel issues are
more likely to develop selfesteem/anxiety issues, and
challenging behaviour. Bladder
and bowel management is
private, and ownership of what
information is given and when
needs to stay with the child.
Once the information is out, it
cant be taken back.
Do consider
sharing with someone
if you have a shunt in
case of an emergency
at work, but make
sure they know that
this is unlikely to
happen or they may
worry needlessly.
w youtube.com/ShineUKCharity 19
Shine Stars
Shine Stars
We know that when you lose
someone you love, you might
chose to dedicate a memorial
plaque in a place of personal
significance to commemorate
the life of the person special
to you.
Here at Shine we wanted to be
able to offer families a unique
and special way to remember
those we love who have lived
with spina bifida and
hydrocephalus.
We are now proud to introduce
Shine Stars, special plaques
which are featured on the walls
at Shines Head Office and offer
a personal and permanent
tribute in memory of your loved
one.
Shine Stars are appreciated by
everyone that visits Shine, they
honour the love of our families,
the achievements of our
members, and show others why
our work is so important for
Stars are
openings in Heaven
where our loved ones
shine bright and let
us know they are
happy Inuit
saying
elace
James Lov
Emma and
Avas big
sister, Oliv
ia
20
shinecharity.org.uk/shinestars
Fundraising
Shine Supporters
One of the growing areas of fundraising for us last
year was in the field of business. These
relationships varied from one man bands to
international corporations, from one-off events to
being either Charity of the Year or a Corporate
Partner. The common thread was that these
partnerships helped raise significant awareness of
Shine as well as raising funds.
We would love to build on this success to help us
reach more potential members as well as increase
the services and support we can offer.
Do you work for or own your own business, or
have friends and family that do? If so, please
either contact Clara to discuss how we may be
able to work together, pass on the details of your
contact at the company, or pass on my details to
the right person!
Contact Clara Gill on
E: clara.gill@shinecharity.org.uk or call
T: 01733 421307
The more businesses we work with, the brighter
we can Shine!
We are proud to be working with...
www.shinecharity.org.uk
21
Gobis Gossip
Gobis Gossip
Hi All! I hope everyone is having a good start
to the year. Its fair to say 2013 was a difficult
one for a lot of people myself included.
In fact, even the last few days of year didnt quite
go as Id planned as I ended up in hospital for the
festive period. The good news was that my
residency in Stevenages Lister Hospital wasnt
anything to do with my Mitrofanoff. The bad news
was that Id developed a septic chest infection
not good!
Despite my hospitalisation hiccup, the end of
2013 wasnt all bad. I did manage a few high
points starting with a Silver medal at the ParaBadminton World Championships in Dortmund,
Germany. I then had an appearance on Frankie
Fryers Away Days feature on Skys Soccer AM. If
that moment of glory on television wasnt enough,
I came away as the winner for the Hertfordshire
Service to Sport Award, which was an unexpected
surprise for me.
If 2014 can continue in that vein of success, Ill be
delighted! Theres lots being planned and I have a
number of Shine projects which are proving to be
a success too. With each region I visit, not only
am I engaging with more of you Shine members,
but, with the priceless help of Media Development
Officer, Darren Fower, were setting up lots of
support group pages on Facebook. This will help
massively in identifying where youre all located,
which in turn will help bring many of you together
from your surrounding areas. In addition to this, in
each area I visit Im engaging with a number of
professional football clubs who are willing to help
support me in raising awareness about Shine,
spina bifida, and hydrocephalus.
Benny Bear
Can you
name Bennys
new friend?
Benny, has received some exciting news! His
Mummys friend is expecting a little baby girl bear.
Just like Benny the little girl will have a special
condition. Her condition is called spina bifida.
They have asked Benny to think up a name for
her and Benny would like all of his club members
to help him choose. He knows this is a very hard
challenge (Im sure your Mummies and Daddies
will tell you that deciding on a babys name is
difficult because they will have it forever!). Benny
is offering some great prizes for the club member
who picks the best name!
All you need to do is send back the entry form
below with your suggestion for the name of
Bennys baby friend. Entries must
be submitted by 1st May 2014
First Prize
30 Toys R Us
Voucher
Runners-up Prizes
3 x 10 Toys r Us Vouchers
Name
Address
Postcode
Telephone Number
Name suggestion
Send entries to: Shine, 42 Park Road, Peterborough, PE1 2UQ. By 1st May 2014
stores.ebay.co.uk/shineukcharity
23
SAMC update
SAMC update
Hello everyone and a very warm welcome to 2014. I hope you all had a nice
Christmas and New Year.
24
Events
Lisa Cain and Jason Merrill
attended the Great Minds event
in Peterborough on Friday 11th
October 2013. This was Shines
first event on Psychological
Wellbeing and it was good to
see members coming from as
far away as York, London, and
Somerset. A new event is
planned for 2014.
Finally
The SAMC hope to recruit a
new member shortly and I will
be able to give an update in the
next issue. As always, feel free
to make contact regarding
anything you would like to know
or has been achieved on the
members behalf.
Appeal upheld
In November 2013, a court of
appeal upheld a legal challenge
by five disabled people against
the governments decision to
close the Independent Living
Fund (ILF) in March 2015. A
unanimous judgment from the
court held that in December
2012, the Minister for Disabled
People had breached equality
duties when making the decision
to close the ILF. It is not clear
what effect this judgment will
have on the future of the ILF, or
the long-term implications for
people who rely on the fund to
provide their care and support,
but I will update you all when we
know more.
Michael Bergin
Communications Officer SAMC
E: mike.bergin@shinecharity
.org.uk
www.shinecharity.org.uk/SAMC
This is Me
Shine's This is Me Club members enjoyed getting to know
each other better at Cadburys World and at the Sea Life Centre
in December 2013.
In fact, the trip to Cadbury's
World proved so popular that
some members were
disappointed not to make it and
a second opportunity to visit is
being organised.
This is Me is a club within
Shine which enables young
members to get more involved.
Those aged 13+ can chat to
each other and Shine's Youth
Worker on a closed Facebook
page, and all members receive
a free newsletter in which young
people can express their views
on everything from computer
games to school life.
In 2014 we hope to expand our
youth activities at Shine to
include young people aged
11-18, and to find ways of
listening more to what young
people want to do, what
concerns them, and to work with
them to find ways of really
making things happen.
A new part-time Youth Worker,
Nic Shaw has just joined Shine
to take this work forward. Nic will
join the This is Me Facebook
page and will mail out to all
young people aged 11-18 to
r
Shine Youth Worke
Nic Shaw
www.thisisme.org.uk
25
Events information
Time
10:30am 4:30pm
Sessions to be presented
by Gill Yaz, Health Development Manager,
and a representative from Peristeen.
26
Events information
Events
Events
shinecharity.org.uk/events
.
.
27
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