Together Issue 7

SHI_Together_Issue7_AW_Layout 1 08/11/2012 14:29 Page 2

Superstar fundraisers Tinchy Stryder SAMC nominations

Ian
means
business
Shine’s first
Christmas
appeal


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registered reserved


Welcome toTogether

CONTENTS Hello again...
P4 News

P7 Emma Enfield OT
Itʼs hard to believe that
P10 Health with Gill Yaz we are heading rapidly
towards another
p12 Christmas appeal Christmas but the
cards that we have for
P16 Fundraising sale on page 27
confirm that this is true!
P19 Silver Dreams Introduction and
family workshop Weʼve packed as
much news,
P23 Northern Ireland information, features,
and events into this
P25 Events issue as possible, there is so much going on in
the Shine community that the demand for articles
Together Editor: Tom Scott and photos for each edition is growing and
Deputy Editor: Gail Howard growing – thank you for all your contributions!

All enquiries and comments to: You can catch up with our regular features
Together Shine, 42 Park Road, including Gobiʼs Gossip, Gill Yazʼs health column,
Peterborough, PE1 2UQ Mike Berginʼs feedback back on all the SAMC
Telephone: 01733 555988 activity, and we welcome Emma Enfieldʼs new
Textphone service: 01733 421395 spot which focuses on occupational therapy.
info@shinecharity.org.uk
www.shinecharity.org.uk Our main feature focuses on Ian Laker and his
success in running GBL, a company selling
Please let us know if you are happy to wheelchairs for over two decades. Ian talks about
receive future mailings by email as this his time at school, his experience as a GB
saves on postage and helps the basketball player, and how establishing a
environment. business as someone living with spina bifida
Email: info@shinecharity.org.uk demands a certain outlook on life.

As usual, I would encourage you to get in touch
and let us know what you like, what you want to
see more of, and to share your news and photos
with us. I look forward to hearing from you soon!
Submission dates for
Autumn edition
• Register of interest to submit:
28th September 2012
• Final date for submissions:
19th October 2012 Together Editor
• Publication date:
2nd November 2012 Cover photo: Gobi and Ian from GBL.
Photo: Tom Scott

3


News

Carl Kicks Benny’s Big
his Way to
the Top Birthday in
Shine Member, Carl
Hodgetts 34, who has
spina bifida, was awarded
Queensgate ...
a black belt in kickboxing
by the governing body, the On 15th September Benny
World United Martial Arts Bear celebrated his birthday
Federation (WUMAF), in with a big party at Queensgate
2006. To facilitate Carlʼs Shopping Centre in
disability, the federation Peterborough. Many local
rebranded his technique to people came to meet Benny
ʻfreestyle martial artsʼ, and to share his birthday cake.
which involves using his Smiling bear faces were spotted
arms and hands to kick around Queensgate throughout
opponents, instead of the day, thanks to the success
using his feet. of the Benny Bear face painting.

Carl told Shine, “I have With a day of party games,
been a member of what face-painting and a bouncy
was ASBAH, now Shine, castle, Shine had a very
for as long as I can productive day raising vital
remember and I enjoy awareness and a total of
reading the stories in the £672.82.
magazine because I get
extremely inspired by the
things people have
achieved!”

We are inspired by you too
Carl, keep it up! Ed.

As you may know Shine Patron,
Danny Mills was a contestant in
the 2012 series of Celebrity
MasterChef.

Competing against fifteen other
well-known personalities,
including Gareth Gates, Michael
Underwood, Jamie Theakston
and Cheryl Baker, all keen to be
crowned 2012 Celebrity
MasterChef Champion, Danny
made it to the final, and was

4


Shine’s
Paralympic
Reports
Shine Members, Daniella Jade- Above: Daniella with Jessica Lowe,
Lowe, Reporter for the Royal Bermudian Paralympian, whilst
Bermuda Gazette and Nicholas sight-seeing in London. Photograph
Chiddle, Sports Journalism by Alex Michael.
Graduate, share their Left: Nicholas with his Fielder
experiences and views of the of the Season trophy, for
London 2012 Paralympic Hertfordshire Disabled County
Games. Cricket Club

Daniella Jade-Lowe Nicholas Chiddle
Travelling in London during the Paralympic Games The Sport itself was a joy to behold,
was quite an adventure, and overall it was a especially with GB surpassing their medal
positive experience. The public places I visited total expectations, and, if the action alone
were wheelchair friendly, equipped with ramps and wasnʼt enough to inspire you, then how
lifts, to make getting around easier for physically about 80,000 people chanting Jonnie
challenged people. Peacockʼs name?

The Transport for London staff were very efficient. The best thing about the Paralympics was
On one occasion when boarding a bus the ramp the word disabled being essentially dropped
malfunctioned. The staff immediately reported this and instead the ability of each athlete was
and requested a replacement ramp, which arrived discussed. This may seem like such a basic
really quickly and enabled me to board. idea, but there is a huge difference a
disabled athlete and an athlete who is
To read more about Daniellaʼs experience please disabled; the latter is what every competitor
visit shinecharity.org.uk/RoyalGazette should be.

Congratulations to Danny Mills!
eventually beaten by Emma achievement didnʼt end there. Danny is on course to raise
Kennedyʼs culinary skills. In October Danny successfully over £10,000 for Shine, which
completed the first Archie Mills includes £2000 from
Congratulations Danny from all Memorial Challenge, which MasterChef and this yearʼs
at Shine on this great involved cycling with Scott series winner, Emma
achievement! Nielsen from Leeds2London Kennedy. THANK YOU to
and then, the following day, everyone who made this event
However, Dannyʼs completing an Olympic happen and those who
extraordinary year of distance triathlon. donated so generously!

5


SAMC nominations

Here at Shine we are working
hard to find as many possible
ways for people to be involved
with your organisation. Gobi
Ranganathan, Membership
Development Officer, is out and
about recruiting new members
and raising awareness of who Shine Member Amar
we are and what we do. To give Dugal attends a recent
you an idea of Gobi’s work, 78 event representing Shine
new members joined just last Adult Members Council.
year.

Benny Bear now has 528 little
members in his club, with some
babies being enrolled while still
Getting YOU involved
in their incubators. There are group were also responsible for Time to find new SAMC
amazing Shine volunteers up initiating the Shine Health members
and down the country, Survey, which has provided so Members serve three years on
fundraising or helping out in much information about the SAMC and then they stand
clubs and groups. Other health issues faced by our down to allow a new SAMC to
organisations for spina bifida members. Two SAMC members, be elected. We have now
and hydrocephalus, whether the Chair and Vice-Chair, serve reached that time in the election
local, national or international, on Shineʼs Board of Trustees, year when we ask for
work alongside us and help to enabling the group to have a nominations for the new SAMC.
shape what we do. real influence at the heart of the We are looking for disabled
charity. people who really want to be
Disabled adults at the heart of involved, who have some time to
the charity
Everyone is encouraged to play
Benny Bear give, who ideally can travel to a
few meetings per year and who
their part and have a say. One
very significant group in all of
now has 528 feel they can represent
thousands of members who
this is the Shine Adult Members little members share their disability.
Council (SAMC). This group of
members aged 18 and over, are in his club ... What to do if you are
elected by the Membership to interested
represent them, and to provide SAMC meets four times a year, There is a role description for
accurate and up-to-date usually at Shineʼs HQ in SAMC members which
information on what it is like to Peterborough, or occasionally at describes what is expected of an
live with spina bifida and/or other venues around the country. SAMC member. If you would like
hydrocephalus. The current In addition members may attend to view the Role Description
members of the council have events, training and local please contact Lynn Hart
been involved in helping to groups. Some members, if T: 01733 555988 or
shape the content of Shine ʼs comfortable, may be asked to E: lynn.hart@shinecharity.org.uk
Strategic Plan, the name speak to the media, and all and weʼll make sure you receive
change, the Go Folic! launch at members will be asked to share a copy. If you feel that you fit the
the House of Commons, their life experiences with Shine. Role Description then weʼd really
responses to Government welcome your interest. If you are
consultations and attending and Shine pays all travel costs, meal not sure, you can call David
feeding back on Shine events costs and overnight Isom on 01733 421308 to
across the country. Perhaps accommodation costs, where discuss it further. Existing SAMC
most importantly, the current necessary, to volunteers. members can apply to stand

6


Occupational Therapy

again, but must follow the same
process as new applicants.

How to apply
Emma Enfield
If youʼd like to apply for the role, Shine’s Occupational Therapist
simply fill out the short
questionnaire attached to the In August I became the Lead Occupational Therapist/
Role Description and send it to Development Worker, on Shineʼs Health Team. I already
SAMC Recruitment, worked for Shine as a Support and Development Worker and,
Shine Charity, 42 Park Road during my time in this role, it became apparent that a therapy
Peterborough PE1 2UQ, or service was greatly needed, so here I am….
e-mail it to Lynn Hart, address
mentioned previously. I qualified as an Occupational Therapist (OT) in 1995 and have
spent most of that time working as a Community OT in the
What happens next? NHS and Social Services. I am thrilled to have this opportunity
Your application will be looked at to put my OT skills to work for Shine.
by Shineʼs Human Resources
Manager and senior colleagues Some of you may have already spoken to me - I respond to
to make sure that it matches the requests relating to therapy, housing, mobility, equipment etc.
role description. If you pass this So when you contact Shine in the future, you might hear back
stage, your name will go forward from me.
for election to SAMC. Your name
and a few brief details about you
will appear in the February issue ... I would love to know
of Together (donʼt worry, weʼll
talk to you about this first) and about your experiences
Shine adult members will be
invited to vote for you. The 10 with any therapy services ...
applicants with the most votes
will become the next SAMC. If I would like to develop the OT service to help Shine members
there are fewer than 10 as much as possible. To date, I have mostly received enquiries
applicants, the membership will relating to problems with wheelchair services/provisions, and
be asked to support their adaptations/equipment needed for people to live independently
election as a group. at home, or to reduce the strain on their carers. So these are
two areas that I know I need to look into further.
Please think about it
If you think you have something I am going to be writing regularly for Together and I hope that
to offer, please donʼt hold back. you find my columns useful. If you have any ideas for subjects
SAMC meetings are fulfilling and you would like to see, please email me and I will aim to cover
fun and it is a real opportunity to these topics.
develop yourself whilst helping
Shine at the same time. If you Going forward, Iʼll keep you updated with all of the exciting
have ideas about what we developments. To kick start my work, I would love to know
should do, things we should about your experiences with any therapy services that you
encourage, or statements we have been involved with, both good and bad! Are there any
should make about having spina gaps in the service you have received, that you feel it would
bifida and/or hydrocephalus then helpful for me to know about? What would be useful for you
this is a real chance to make from a therapy service at Shine? I am looking forward to
yourself heard, represent the hearing from you.
growing membership, and
influence the future direction of E: emma.enfield@shinecharity.org.uk
Shine.

7


Feature

Ian means business

Words and photos by Tom Scott

Since joining Shine 18
months ago I have met for over two decades. Over the years the shape of
a lot of inspirational the business has changed and today, of the
characters. However, founding partners, it is only Ian that is still involved
it was on a recent at GBL.
visit to the wheelchair
distributor, GBL, that Earlier this month I went along to see the GBL
I met someone who service first hand as Shineʼs Membership
has taken such Development Officer, Gobi Ranganathan, was
inspiration to the booked in to collect his new chair.
next level.
The first thing that strikes you upon arrival is the
size of the business, this is no small time venture.
Twenty two years ago Ian Laker, with his two Ianʼs unit houses every type of wheelchair you can
colleagues at the time, started a business selling think of, from the smallest childrenʼs wheelchair to
wheelchairs. This was a unique venture in that Ian large electric chairs with hoists and highly technical
and his two business partners, Jamie and Steve, disability specific controls.
all have spina bifida.
More important than this, though, is the warm
Ian explains that in the beginning ʻthe phone didnʼt welcome that the staff at GBL offer. You sense
ring for three months!ʼ Times were tough, the trio immediately that this is a business that genuinely
had committed themselves to a 2000 sq/ft starter values the customer, and this is a direct result of
unit, which was hardly filled by their first twenty Ianʼs friendly and accommodating personality.
wheelchairs.
It hasnʼt only been success in business that has
Their fortunes, however, were soon to change – kept the Northampton born entrepreneur busy
the phone started to ring and hasnʼt stopped now either. Until recently Ian had been involved in

8


Feature

s
wheelchair basketball for 32 consecutive GBL. Since then a lot has changed, however Ian
seasons! also talks about principles that have remained
consistent over the years.
This included representing Great Britain in the sport
and coaching some of the nationʼs more recent The importance of parents to encourage their
stars, including Anne Wild. children to be independent, in spite of their spina
bifida and/or hydrocephalus, the necessity of
During the interview with Ian I was intrigued to striking a balance between independence and
know more about how he has become so getting together with people who can genuinely
successful; he has obviously experienced a great identify with each other, the fact that if people
deal in life and conducts himself as someone who with disabilities want to work, then they need a
means business. work ethic that offers no excuses, and the need
for charities like Shine to collaborate with its
Ian identifies his parents as being membership effectively, all
instrumental to his development come across very clearly in
as increasingly he became an ... if people what Ian communicates to
independent person. This
attitude to life proved essential as
with those around him.

Ian progressed beyond the
doctorʼs opinion that he would
disabilities It was a pleasure to meet with
Ian, and Gobi left a very
die young. want to work, happy man with his new
wheelchair. To read more
After a combination of study at then they need about Gobiʼs experience at
both State school and the GBL see page 14 and 15.
disability specific Treloars a work ethic
School, Ian wanted to pursue his To find out more about
love for sport at university. that offers no the services GBL offer
However, growing up in the please see:
1970ʼs meant that the options excuses ... www.gblwheelchairs.com
that we know today were not yet
available. Ian was told that in order to complete his
desired course he would first have to gain a degree
elsewhere due to his perceived inability to
complete the physical aspects of the course.

By the time he was eighteen Ian was already
representing Great Britain as a wheelchair
basketball player and he had his eyes set on
improving his standard of living, starting with his
car! With this in his sights Ian trained as an
Accountant and went on to work for ASBAH until
the charity moved to Peterborough. It was at this
point, with no desire to move from his home in
Hounslow, that Ian and two of his friends set up

9


Health

Bladder and Bowel Day
Ensuring that children and adults
with spina bifida receive the very
best care for their bladder and
bowel issues has long been an
important part of the Shine
Health Teamʼs work. I am
fortunate enough to be in contact
with some of the excellent clinical
services who believe that
continence, as well as kidney
health, are the aims of bladder
and bowel management for
young children with
spina bifida. Working
closely with families, Thursday
they aim for most 20th
children to be September
wearing regular bladder. Interestingly, increase the capacity. It is used
underwear by the By Health Mr Malone informed more and more for adults, with
time they complete Development us that since his good effect. It can be used in
infant school. Manager centre adopted this children too, however not all
Gill Yaz approach several Paediatric Urologists are happy
On 20th September years ago, there is to use it as the child will have to
the Life Long very little need for go into hospital every 6 months
Opportunity bladder augmentation, for repeat injections.
Programme welcomed Mr Pat a major operation to enlarge the
Malone, Consultant Paediatric bladder. Likewise, Peristeen has The important message for
Urologist at Southampton reduced the need for the ACE. parents who have children with
General Hospital, to talk to spina bifida is that there should
parents about modern bladder Some other centres treat all always be an active plan, not
and bowel management. For babies born with spina bifida with only to preserve the kidneys but
years, Mr Malone and his team medicine and intermittent also to promote continence, and
have been working to improve catheterisation, stopping later if planning for this should start
bladder and bowel care for everything looks to be fine. within the first months of life.
children with spina bifida, These centres are also finding Hopefully with such models of
inventing the ACE procedure for that there is a much lower excellent practice in many parts
bowel washouts. requirement for surgery, as the of the country, continence can be
bladder is much more able to fill achieved by many children,
In his talk, Mr Malone spoke properly. A relaxed bladder is a without surgery. It wonʼt work for
about the importance of early safe bladder; by keeping the everyone, but itʼs definitely worth
assessment to check that the pressures down there is a lower pursuing. Your children will gain
bladder is able to fill and empty chance of kidney damage so much confidence through
urine (Urodynamics) in the first through reflux. achieving continence, the sooner
months of life. If the bladder the better!
function is affected, Mr Malone As well as medicine, some
prescribes medicine to relax the urologists are using injections of To contact Gill Yaz please
bladder, and intermittent botulinum toxin, such as Botox, T: 0208 449 0475 or
catheterisation to empty the to relax the bladder muscle and E: gill.yaz@shinecharity.org.uk

10


Go folic

Family Planning
Goes Folic!
Shine has formed an exciting new
partnership with the Family Planning
Association, which will see Go Folic!
promoted in Family Planning Clinics
throughout the UK. This new partnership will
provide us with a unique opportunity to
directly target large numbers of women of a
childbearing age with the Go Folic! message
before theyʼre starting to think about
pregnancy. Go Folic! literature will be
available to all women attending the 3,000 with Norfolk and Waveney Primary Care Trust
Family Planning Clinics and 2,000 specialist to develop a Go Folic! pharmacy campaign for
family planning GP surgeries in the UK. the region. During the course of the 2 month
campaign, pharmacists reported that
We are very fortunate to have been given displaying our information had prompted more
such a great opportunity to promote Go Folic! women to ask questions about healthy
on a national level and in such a targeted way. pregnancy and taking folic acid, with some
As a result many more women will be made pharmacies noticing a definite increase in their
aware of the importance of taking folic acid over the counter sales of the supplement. This
before they plan a pregnancy, so that was exactly the result that we were
when the time comes the concept of hoping for. However, most
taking folic acid wonʼt be a new one. significantly, we discovered from
the Chief Pharmacist that
In addition to promoting the prescriptions for folic acid in the
campaign in their clinics, our friends area rose by a whopping 700
at the FPA are also promoting folic prescriptions during the
acid awareness on their website, quarter of the campaign!
and have also ensured that Go Folic! This has given us a
literature (along with some specially tremendous boost, as it
created Go Folic! branded folic acid just goes to show that we
tablets) form an integral part of their are getting things right. We
new fertility kits, which are available arenʼt just increasing awareness,
to purchase from their website weʼre changing behaviour too.
fpa.org.uk We hope that the trust will
become the first to adopt Go
Partnerships with other Folic! on an on-going basis
organisations have already proved and hope to roll out the
very successful for Go Folic! campaign to other PCTs in
Earlier in the year we partnered the near future.

Thank you all for your continued support. Keep up the great work tweeting and sharing!

11


Christmas appeal

Can you Make a Gift to S
My name is Aidan and my family
have been members of Shine for At the time, everyone
a very long time. Iʼve been raising thought my Dad was
money for them and telling going to die, but he
people how brilliant they are didn’t – luckily for all
since I was six years old – Iʼm 11 of us, he’s still here
now. with us.

Iʼd like to tell you why
I do this, because
I hope it might
encourage you to send
in a donation this
Christmas, to enable
Shine to keep helping
families like mine. They
really need our support.

When I was five, Dad
suffered lots of severe
strokes and developed
hydrocephalus. He was families when they go through
seriously ill and had to go hard times.
into intensive care after
an emergency operation Once, I sent Shine £10 from
to insert a shunt from his selling my homemade
brain into his abdomen. marmalade and coconut ice.
Dad was a Parish Priest They always send me a nice
and although he made a stressed and anxious, and itʼs thank you letter telling me how
miraculous recovery, he never really helpful that I can tell people every pound is important.
recovered enough to stay at work about his hydrocephalus – I can
and so he had to retire. Mum had only do this, because our Shine My family doesnʼt need any help
to give up work too. We ended up SDW had explained it to me so from Shine at the moment, but
moving house, so I had to leave clearly when it first happened. Mum says you never know what
all my friends from Cubs and my She gave me and my Sister the future holds. By making a
old school behind. It was horrible ʻBenny Bearʼ books to learn donation today, we can make
and changed our lives forever. about what had happened to sure that every little boy or girl, or
Dad, so that we werenʼt so Mum or Dad living with spina
One of Shineʼs Support & scared of it all. bifida and hydrocephalus will
Development Workers (SDWs) always have somewhere to turn
came and visited us lots, so we Mum says things like this cost a to when things get tough.
could ask questions and they lot to produce, so Iʼm always The best way that you can
could help us all understand why keen to help raise money for help Shine to support other
Dad behaves a bit differently Shine whenever I can, so that families like mine is to send a
now. Sometimes Dad gets they can keep helping other donation.

Mum said Shine was like a guardian angel, not just for Dad but for all of us.

12


Christmas appeal

o Shine this Christmas?
Your donations will help Shine to continue providing the support and
advice which is so desperately needed by other families like mine.
For example, as part of its Lifelong Opportunities Programme,
Shine organises an annual residential Family Opportunity
Weekend. Please consider making a donation this Christmas,
so that Shine can keep helping people like my Dad and me.

If you canʼt make a donation instead? You could bake some
today, could you do something cakes and sell them to your
to raise money for Shine friends and family, or perhaps
you know someone who would
like to run the London
Whether you want to give Marathon for Shine!
regularly, or if you’d rather
make a donation right now, The people in the Fundraising
all you need to do is fill in Team are always really friendly
the form that’s with this and happy to help – so you promise to send you a nice
magazine and send it all can always give them a call on thank you letter if you are able
back in the envelope 01733 421351 to talk about to make a donation today.
provided. your ideas. I hope you all have
a lovely Christmas and I Love from

If you wish to make a regular donation please complete the form below and
return it to: Monica Evans, Shine, 42 Park Road, Peterborough PE1 2UQ

Instruction to your bank or building society to pay Direct Debit

I would like to give Shine a gift of £_______________ Monthly/Quarterly/Annually starting ___ / ___ / 20___
Name: Address:

Postcode:

Please fill in the form and send to: Service user number

To: The Manager Bank/building society
9 7 3 1 0 6
Address:
Reference

S h i n e A p p e a l 2 0 1 2
Postcode: Instruction to your bank or building society
Please pay Shine Direct Debits from the account detailed in this instruction subject to the safefguards assured by the Direct
Debit Guarantee.I understand that this instruction may remain with Shine and, if so, details will be passed electronically to my
bank/building society.
Name(s) of account holder(s):

Signature(s)

Branch sort code Bank/building society account number

Date:

Bank and building societies may note accept Direct Debit instruction for some types of account DD | 5

13


Gobiʼs gossip

Following a fantastic summer of Olympic and of activities that have taken place during 2012! You
Paralympic action, I hope that everyone still has might find Christmas has been and gone by the
the feel good factor that London 2012 brought us time you finish reading this, as once again thereʼs
all as we head towards the festive period! Okay I plenty to get through!
know itʼs only November, but before we know it
Christmas will be here and Auld Lang Syne will be Since the last issue of Together, Iʼve been involved
ringing out from households across the nation, as in all sorts of exciting things. Following on from
we say farewell to 2012 and we welcome 2013! being an Olympic Torchbearer in Stevenage, Iʼve
been the Paralympic Flame Ambassador for
Talking of the New Year, it really is scary how Hertfordshire, taken part in the Welsh 4 Nations
quickly time is passing. Even scarier is the number Para-Badminton Championships, completed a 5K

14


Gobiʼs gossip

Fun Run at the Great Eastern Run with Darren and Mixed Doubles, and Silver in the Singles,
ʻThe Powerʼ Fower, visited more schools, and even narrowly losing to my on-court rival and friend,
had time to fit in getting a new wheelchair! Martin Rooke. It was disappointing to lose out
again, but Iʼll beat him soon enough! A special
I had the very good fortune of being able to attend thanks to Kate Thomas from Shine Cymru, who
a number of Olympic and Paralympic events, came along to support me at the Welsh Institute of
meeting some past and present stars, such as Sport in Cardiff.
David Clarke (Captain of the Paralympic GB 5-
Aside football team), Louise Hunt (Wheelchair Mid-October saw me take part in The Great
Tennis), 3 time Olympic medallist Kriss Akabusi Eastern Run after my Shine buddy and Media
and one of the greatest Paralympians of all time, Development Officer, Darren Fower threw down
Tanni Grey-Thompson. I also grabbed the the challenge of getting me to take part. Not
opportunity to rub shoulders with a number of other being one to refuse a (reasonable) challenge, I
celebrities including Prime Minister David accepted and set about entering the 5K Fun Run,
Cameron, Mayor of London Boris Johnson, and with the additional challenge of raising £1000,
pop star Tinchy Stryder. just to make it interesting! It was a new
experience for me and Iʼm definitely a long way
You may remember, before the off doing the London Marathon.
Olympics started I was making a justgiving.com/DarrenandGobi
number of school visits. These
visits are great fun and itʼs lovely With all of this excitement and
to see the children showing so activity, I still found time for some
much support for Shine. important retail therapy when I
Alexandra Infants School, in visited GBL Wheelchair Services
Kingston-Upon-Thames raised in Feltham, London. Having been
money for Shine a short time needing a new every-day
ago and since then have been wheelchair for some time, I met
getting involved in more with Managing Director of GBL,
fundraising. One of our younger Ian Laker. Ian, who himself has
members, Jack Keleman attends spina bifida, assisted me in
the school, and in September he selecting a new wheelchair. After
Above: Gobi with the Rio
took part in a Sponsored Bounce, test driving a number of
Dancers, part of the
the objective being to bounce as wheelchairs at GBLʼs showroom,
parade going
many times as possible on a I selected my new mean
through St Albans
bouncy castle. Itʼs fair to say machine – a Top End Crossfire! I
Left: Gobi with
there was a great deal of jumping can now say goodbye to the
Tinchy Stryder,
around, with the school raising a regular and rather painful back
holding the
fabulous total of £150 for Shine. troubles Iʼve been having as a
Paralympic
Well done to the school for their result of my old chair. It just goes
torch together.
efforts and also to Sarah to show how important it is to
Keleman for plugging Shine at have the right wheelchair. For
every opportunity. Donʼt forget if you want to more information on Ian and GBL see the feature
organise any fundraising events get in touch with in this edition on Page 8.
Hannah or Andrew in the Shine Fundraising team.
Who knows, you may even get a cheeky little visit And there you have it. The last few months of
from your Membership Development Officer! E. activities condensed into a nutshell, albeit a rather
Hannah.wysocki@shinecharity.org.uk or large one! Once again, time and space have
Andrew.ellis@shinecharity.org.uk beaten me and I have to wrap up my column for
another edition. After a hectic and enjoyable 2012,
September also saw the start of the new Para- I hope that 2013 will be even better.
Badminton Season and, after one of my best
performances, I came away with Gold in the Menʼs See you in the New Year!

15


Fundraising news

Fundraising begins at 40!
I celebrated my 40th birthday this year by keeping up with her twin sister, Lucy and her
challenging myself and ten friends and family older brother, Sam. Shine provided not only
members to the Leicester Half Marathon on vital information about hydrocephalus and a
14th October. We raised £2000 for Shine! place to turn to with problems, but also made
us aware that we are not alone. The new name
It's 9 years since we found that our daughter, and image at Shine have brought everything
Ella, had a spinal cord tumour and to life!
hydrocephalus. I would never have believed
that 9 years later, Ella would be running around, All the best, Anne Thomas

Virgin Active London Triathlon
The weekend of 22nd and distances, in the fastest time So thank you to everyone who
23rd of September saw an possible. competed, supported, or
awesome team of Shine donated to the Team.
fundraisers galvanized for the There were a number of
worldʼs largest triathlon event individual competitors, as well Charlie
at the Excel Centre and Royal as teams of three (each still
Victoria Docks, London. choosing to do an individual smiling
discipline) competing to raise after the
Triathlons are definitely not for money for Shine during the event
the faint hearted, with those weekend.
competing taking on
particularly intense swimming, So far, Team Shine have
cycling and running raised over £11,000 and there
challenges, over a range of is still more money coming in!

16


Letters to the editor

Dear Tom, Dear Editor,

In 1997, aged 18, I was diagnosed with I was born in 1979
congenital hydrocephalus. Over the with congenital
next two years I underwent five hydrocephalus and had
operations and three shunt systems, a shunt fitted at Great
but I was still in pain. Ormond Street Hospital.
I would like to fundraise
Having late onset hydrocephalus was difficult. I went from for Shine, as I find
being a confident and active person, to spending most of my them very inspiring, and
late teens in and out of hospital. Faced with constant pain I hope to take part in the
and being unable to see my friends often, I would sometimes 2014 London Marathon.
naturally feel down.
I believe that you must
I realised that I had to look to the future, to what I could do in always live life to the
good health, and keep that goal as motivation for a speedy fullest. If you are
recovery. Understanding the need to distract myself from thinking about having
pain, I took up black and white photography and poetry an EVT procedure,
writing. whatever your age, I
recommend that you go
That was 15 years ago and, over time, I have learned that I for it. It changed my life
can do whatever I set my mind to. Having two tubes in my and helped me to
head (Torkildsen procedure) doesnʼt stop me. I have climbed achieve my dreams. I
mountains and, two years ago, I completed an Ironman for can now see my little
then ASBAH. No matter how bad things become, they will girl grow and thatʼs
always improve and having a positive mind set and great, amazing!
loving support are very powerful tools.
Kind Regards,
Yours sincerely, Johnny Jodie Guest

Bon voyage, Simon!
Simon Tubb was born with spina bifida and is
one of our latest fundraisers to have been bitten
by the triathlon bug. Four years ago, struggling
with his weight, Simon decided to sell his
PlayStation, buy a bike ʻand the restʼ he says ʻis
historyʼ.

Now 7 stone lighter, Simon is training for the
London to Paris Bike Ride in April 2013 to raise
money for Shine, and he is also competing in
the Slateman Triathlon in May! Having been told
that it was unlikely that he would even be able to
run, Simon has disproved this diagnosis. Good
luck Simon! Follow Simon through his training
and preparation at: www.sjtubb.blogspot.com

17


Welcome toTogether

SAMC Meeting August 2012
The SAMC met for their third meeting of 2012 on opened and everyone welcomed by Shine Health
Saturday 18th August at Shine Head Office, Development Manager, Gill Yaz. Mr Patrick
welcoming CEO, Jackie Bland, Development Malone, Consultant Urologist, at Southampton
Manager, David Isom, and Health Development General Hospital, gave one of the best
Officer, Robin Barnatt. presentations Iʼve heard and had everyone right in
the palm of his hand with his every word as he
Developments explained everything.
Shine has drafted a description and person
specification for the role of members Mr Malone then took time to answer many
wishing to be SAMC representatives, and questions from the parents, which he managed
used this to consult with the council with ease. Janice Bradley from Coloplast
members present. It was agreed that any introduced the irrigation systems and again
new representatives must be 18 or over to answered many questions on various issues.
be considered. Pauline Gibbons, mother of Gabby, gave a great
account of a parentʼs journey. It was so nice to
So, as we are coming up to the next election for hear a mother talk the way Pauline did; she too
the SAMC, there will be a selection process for answered many questions and could have been
those interested in joining. You can find out more there all day judging by the number of people keen
by reading the piece in this issue on page 6 from to hear about her experience.
Shineʼs CEO, Jackie Bland.
ln addition, Shineʼs Angie Coster, who is now
SAMC also discussed plans for an event for adults Project Coordinator for the Silver Dreams Project
to be held in July 2013. This will be an activity was in attendance. David lsom and Shine
packed day event to be held called ʻRise and volunteer and Trustee, Lorraine Watson, also
Shineʼ at Stoke Mandeville, with the option of talked to some of the parents and those who were
staying overnight. You can get full details on how attending a Shine event for the first time. They all
to attend this event in this issue; we will be looking said that by meeting other parents and sharing
at local and accessible hotels in case some ideas the day was well worth attending.
members would like to stay. We will also be
looking into transport options. I will keep everyone Thank you to everyone who made the event
updated in the next issue. possible.

Events I would like to thank Lee Fomeraill, General
Paul Manning attended the Family Fun Day in Manager at Riverside Volvo of Hull, who provided
Cornwall on Sunday 7 October. According to Paul: me with petrol for my visit to Southampton for the
ʻIt was a great event. Seeing all the members and B&B Day. As a charity these gestures make such a
their siblings enjoying the whole day was a great difference and help to save on costs.
sight.ʼ Amar Dugal attended Understanding and
Managing Challenging Behaviour (Associated with
Hydrocephalus) on Thursday 4 October at Shine
Head Office. I attended the Shine B&B Day in Get in Touch
Southampton on Thursday 20 September (see Finally thanks to the members who have got
below). It is nice that we can get to these events in touch and I hope I have answered all your
and meet the members/parents/carers and questions. Please keep those emails coming,
grandparents involved. as it is your SAMC, for you, the members.

B&B Day Southampton Michael Bergin, Communications Officer
I attended this event and I have to say it was one SAMC. E: mike.bergin@shinecharity.org.uk
of the best that l have ever been to. The event was

18


Events

Family Workshop
North & West Yorkshire ASBAH's Family
Workshop Hydrocephalus/Spina Bifida - What is it
all about? took place on Saturday 13th October
2012, in Bradford. Families with a child with
hydrocephalus and/or spina
bifida, up to the age of eleven,
‘It was priceless for me
were invited to attend. The
and for my children as
workshop was funded by grants
well to participate
from Jimi Heselden Fund,
that afternoon.’
known locally as Jimbo's Fund,
and The Freemasons of
Yorkshire West Riding.

Fifteen families attended and
parents took part in discussions with Mr Ramnath
Subramaniam, Consultant Paediatric Urologist,
and Mr John Goodden, Consultant Neurosurgeon
(both from Leeds Children's Hospital) and Joanne
Grenfell, Shine Education Adviser.

‘Mummy that was an ace day out!’

Shine Begins at 50!
Shine has been chosen to manage an could affect this age group. We will also
exciting new project involving people with create opportunities for people to share
spina bifida and/or hydrocephalus who are practical tips and interests.
aged 50 plus. The Project is one of a number
created nationally which are being funded by Project activities will include a newsletter
the BIG Lottery in conjunction with The Daily written by members, online discussion
Mail as part of their Silver Dreams groups, a befriending service, a new type of
Programme. volunteering scheme, and a national event
towards the end of 2013 to celebrate the
The aim of the project is to reach out to our achievements and explore the issues facing
members in this age group so that they can people as they get older with these
create opportunities to share their conditions.
experiences and make connections with each
other. Previously there has been little attention To register your interest in the project please
given to the issues faced by people with spina contact Angie Coster, Project Coordinator.
bifida and hydrocephalus as they get older. T: 01308 426372 or
E: angie.coster@shinecharity.org.uk
The idea is to gather information about getting or Lynn Hart, Project Administrative Assistant
older and living with the conditions; this could T: 01733 421321
be about health-related problems, caring E: lynn.hart@shinecharity.org.uk
responsibilities, bereavement, financial
concerns, mobility issues – anything that We look forward to hearing from you!

19


Focus on Shine Cymru

Latest Shine Cymru
news round-up
Special educational needs – consultation events a first Spotlight on business
for Shine Cymru South Wales member,
The Welsh Governments proposals for reform of the provision Veronika Bosbury, runs an
of special educational needs prompted Shine Cymru to link on-line sports and
forces with SNAP Cymru to deliver a series of consultation leisurewear company
events for parents/carers. verotti.co.uk

As a result, Shine submitted a response to the consultation to Shine members will
ensure our members views were well and truly heard before receive a 10% discount on
any decisions were made. purchases - just mention
youʼre a member when
• For further information or a copy of the response, you place your order.
contact Sian Prince, Educational Lead for Wales, at Follow ʻVerottiʼ on
sian.prince@shinecharity.org.uk or call our first point of facebook.com/Verotti.co.uk
contact on 01733 555988

Handmade G
ifts
Shine Cymru’s Ambassador Cooking For Sale
programme fever
The WCVA-funded reaches
Volunteer project in Wales
Wales continues to go Weʼve seen
from strength to strength. Many members Danny Mills
across Wales are gaining experience and success in Aprons (inclu
ding Rolling Pi
Small Bags £1 n and Woode
support in their volunteering roles as Celebrity Bottle Bags £1
.50
.20
n Spoon) £5.50

fundraisers and events supporters for Shine Master
Cymru. Chef, Please contac
Mobile: 0772
t Helen Aitken
5594622
for more inform
ation:
Email: helle1
Rebecca 303@yahoo.co
.uk

2013 will see the introduction of an exciting Morrisʼ All proceeds
to Shine
new opportunity for Shine Cymru members, Cook Thank you fo
r helping us su
by spina biﬁd pport families
their families or friends to sign up and train to Book with a and hydroc
ephalus
affected

become Ambassadors for Shine Cymru. recipes Shine, 42 Par
k Road P t

from various
If you are interested in finding out celebrities, including Ainsley Harriott,
more, then please get in touch Tanni Grey-Thompson, Rick Stein and
with Sally King-Sheard (Volunteer Beth Tweddle, and now a group of
Development Officer) on enthusiastic volunteers in North Wales
sally.king-sheard@shinecharity.org.uk are busy making aprons and cookery sets
or 01745 889457 / 07896 912340. to raise money for Shine.

20


Events for WalesAutumn/Winter 2012

Welsh stars of
the future!
Both Harry Thomas from
Pembrokeshire and Dan
May from South East Wales
were recently chosen to
play for the Wales Under
15 basketball team at the
National Junior Basketball
Championships at Stoke
Manderville. Special
congratulations to Dan,
who was team captain.
Well done, boys!

Special
congratulations
to Dan, who
was team
Captain. Well
done, boys!

Christmas and New Year at Shine Cymru
Shine Cymru are looking forward to the Christmas season and are holding several events that
you could get involved with.
• West Wales are holding their Christmas meal on Thursday 6 December 2012 at 12pm in
Aberystwyth
• South Wales are holding their Christmas get-together on Sunday 9 December 2012 at The
Three Horse Shoes Country Inn, Moulton, Vale of Glamorgan, CF62 3AB (approximately 5
miles from Culver House Cross, Cardiff) from 4pm.
• North Wales are holding a Childrenʼs New Yearʼs Party on Sunday 13 January 2013 at
Craig-y-Don Community Centre in Llandudno from 2-4pm.

If you would like to book your place on any of these events please see the events listing on page
27 for the relevant contact details.

21


Benefits explained

Reform of Disability
Living Allowance
Disability Living Allowance for adults is being component (similar to DLA mobility).
replaced. The government has announced that However, unlike DLA, PIP will have only two
from next year, there will be no new applications for rates, a standard rate (similar to middle rate
Disability Living Allowance (DLA) for adults. DLA) and an enhanced rate (similar to higher
Furthermore, all existing adult claimants of DLA will rate DLA).
be expected to apply for the new benefit which is
called Personal Independence Payments (or PIP). The rate of PIP that you are awarded will be
decided with reference to a list of activities and
Q: When will this happen? descriptors – each with its own score value. You
A: For new claims of PIP, people living in the pilot will need to score at least 8 points for standard
areas of the North West and the North East of rate or 12 points for enhanced rate. As this new
England will be able to apply from April 2013. scoring system seems to reflect the middle and
If you live elsewhere in the UK higher rates for DLA, some of the
you will be able to apply from obvious losers will likely be those
June 2013. Disability Rights UK currently on the lower rates of
Go to the home page and care and mobility.
Existing claimants will be scroll down to the ʻfact
expected to apply for PIP sheetsʼ section, and look for Significantly, the most prominent
between October 2013 and ʻPersonal Independence change will be that in most
March 2014. The benefits Paymentsʼ. These fact cases, you will be expected to
office will get in touch with you sheets are very detailed and attend a face-to-face
about this (in writing and by good if you already know assessment. At present we
phone) in due course. your way around the have little detail about how this
benefits system assessment will be conducted,
Q: What about payments? disabilityrightsuk.org but we will keep you updated.
A: For existing DLA claimants,
once you claim PIP, your DLA Q: Where can I get more
will continue until the decision information?
to award PIP is made. If you A: Other than speaking with
are entitled to receive PIP, your local advice agency, you
you will be transferred without can get some further information
a gap. However, it is from the following trusted
important to note that if you sources:
fail to apply for PIP, your DLA
payment will stop anyway. This is why it will be Official
vital to apply once you have been given the Go to the home page and use the search function
invitation to do so. Unfortunately, if the amount to locate web pages on DLA and PIP. There are
you get is less on PIP than it was on DLA, you plenty of official links and resources at
will not get a top-up to make up the difference. direct.gov.uk

Q: What are the key differences? Shine
A: In many ways, there are close similarities Go to the main Shine homepage and look for ʻhow
between PIP and DLA. Like DLA, PIP will have we helpʼ and ʻwelfare benefitsʼ. You will see a
two components: a ʻDaily livingʼ component downloadable fact sheet for PIP on the DLA
(similar to DLA care); and a ʻmobilityʼ webpage shinecharity.org.uk

22


Northern Ireland

Summer Fun
in Northern
Ireland
Although there wasnʼt much sun
this summer, we certainly had
lots of fun! Our younger
members had two outings to
the Donkey Sanctuary in
Templepatrick, one in July and
one in August. The little ones
each rode on a donkey and
dressed up in donkey
costumes. The sensory room
in the Sanctuary was also a
great success.

Our adult Members went on an
outing to Belfast Activity Centre.
They tried wall climbing and
abseiling – definitely not for the
faint hearted. They also tried
archery, but we have no budding
Robin Hoods

We also went to see Footloose
at the Waterfront. A fabulous
night of entertainment and
some of us met the cast!

Northern Ireland contact:
northern.ireland@shinecharity.org.uk

23


AGM

AGM will Ring in Changes
Shineʼs final AGM under the present from the AGM in 2013. It is never too early to
constitution will be held at Shine HQ, 42 Park contact us if you think that you, or someone
Road, Peterborough PE1 2UQ on 29th you know, might be interested in serving on the
November beginning at 10.30am. The meeting Board in the future. Shineʼs Finance Director,
will vote on a new constitution, which will allow Margaret Connor, welcomes all informal
all Shine members over the age of 16 to vote enquiries.
at future AGMs on key matters affecting the
organisation, including who should serve on The AGM will be followed by the presentation of
the Board of Directors. This change will make the 2012 Shine Awards, which recognise
the organisation far more democratic and open individual achievement and outstanding
up further opportunities for members (including contribution to the charity.
family members and professionals) to play a
role in Shineʼs development. Only individual members and Shineʼs Directors
are entitled to vote at the AGM, but anyone is
Alongside changes to voting rights Shine has welcome to attend, stay for lunch, and watch the
undergone a governance review, which will Shine Awards being presented. If you plan to
mean that Board members can only serve a attend the AGM please contact Lyn Rylance
maximum of two consecutive terms. There will lyn.rylance@shinecharity.org.uk
be new opportunities to join Shineʼs Board tel: 01733 421356.

Benny’s brilliant busy summer
What a busy summer I have be available to listen to very anytime! Just call Hannah on
had, travelling from place to soon. T: 01733 421351 to find out
place, meeting wonderful more.
Benny friends and their Whilst I was out enjoying
families. I watched the Tour De myself, hard work was Finally, welcome to Summer
France and the Edinburgh happening all around me. A Finlay, born on 4th April 2012,
Tattoo, but my visit to the nursery in Brighton had a the 400th member of the Benny
Paralympics was the most Teddy Bears Picnic and one of Bear Club. My target is 600
memorable. I was fortunate their staff is now training to run members by December 2012,
enough to accompany Gobi in the Brighton Marathon for can you help? Ask your friends,
carrying the Paralympic Torch. Shine! Hammerwood Cricket schools and clubs. There are
Clubʼs ʻveteranʼ players had a further details about how to join
I love to visit schools, where I charity match and raised nearly at bennysblog.co.uk
can talk to children who have £150.00! Thank you everyone,
hydrocephalus, just like me. these fund raising activities are So, into Autumn we go, with
My Benny Bear books have so important. I was involved in lots of new ideas
now been re-printed and are many Wear Yellow and Shine and enthusiasm.
also available to download for events for Spina Bifida and Thank you all for
just £1.00 each. These books Hydrocephalus Awareness your support and I
are fantastic in helping all Week, October 22nd–October look forward to
children to understand 28th. Donʼt worry if you missed catching up with
hydrocephalus. I have also these events, you can have a more news soon.
recorded the stories as audio Wear Yellow and Shine day or
books, so hopefully these will a Benny Bear Birthday Be brilliant! Benny

24


Events

Shine’s Lifelong Opportunities
Programme of National Events
Shine is continuing to develop ‘We
its Lifelong Opportunities Please contact either Dave Isom look forward
Programme [LLOP], including E: david.isom@shinecharity.org.uk
events such as: T: 01733 555988 or Joan Pheasant
to hearing
E: joan.pheasant@shinecharity.org.uk your
• Family Opportunity T: 01332 556767. ideas.’
Weekend
• Bowel and Bladder Day
• Teenage Residential Event
• Grandparents Day Here at Shine we are keen to develop further LLOP events so
• Hydrocephalus the Hidden we are interested to know what type of events members would
Disability benefit from in the future, for example event themes could be
• Family Fun Day related to education, independent living, wheelchair services,
• Adult Lifestyle Event etc.
• Understanding and
Managing Challenging If you have ideas for future national events we would love to
Behaviour associated with hear from you and would also like to hear about possible
Hydrocephalus. suitable accessible venues local to you.

25


Events

26


Events

Events Events Events
Great news! We have so
many great events happening
throughout the Shine
community that we donʼt
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

Shin Chr
Shine Christmas Cards
ne hrristma Car
as arrds
rd
If you would like to
order some Shine
order
Christmas Cards,
Cards,
please complete
the order form below
order
or call 01733 421328 Kings Contemporary trees Penguins

Each pack
of 10 cards and
cards
envelopes comes with a
traditional Christmas Welly Xmas
greeting inside.
greeting
Carols in the snow Hiding in the snow Garden Robin

ORDER NOW ORDER NOW ORDER NOW ORDER NOW

Please send me: Qty Price per pack Total (£) Payment Cheque/Postal
order made payable
Carols in the snow £3.40 to Shine enclosed
Penguins £2.30
VISA Mastercard Security code
Garden robins £2.80
Hiding in the snow £2.80 Card no.
Contemporary trees £2.80
Kings £3.40 Start date Expiry date
Welly xmas £3.40
Number of packs Postage per pack Signature: .....................................................................................
1 £1.00
Name: ...........................................................................................
2 £1.50
3 £2.00 Address: .......................................................................................
4 to 9 £2.50
10 £5.00 ........................................................ Postcode: ............................
Over 10 packs FREE e ..........................................................Date:.............................
Tel: ...................
Total order
o £ Email: ...........................................................................................
Please return the completed order form together with your payment to: Shine, 42 Park Road, Peterborough PE1 2UQ
1
27


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Together Issue 7

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Together Issue 7