Read about how Shine celebrated our Golden Anniversary Year with our Royal Patron HRH The Duchess of Gloucester at Peterborough Cathedral and much, MUCH more!
1. 1
A Golden
Service
page 4
Shine
Celebrates a Golden
Anniversary Year
with our Royal Patron HRH
The Duchess of Gloucester
at Peterborough
Cathedral
Summer 2016
Shine’s Golden Anniversary
is kindly sponsored by the
BGL Group.
Prenatal Surgery
in Spina Bifida
page 8
Normal Pressure
Hydrocephalus
page 8
Celebrate
with Shine!
page 12
2. 2
News
Our Voice
The Shine Adult Members’ Council evolved from
‘Your Voice’. It was set-up in 2007 to enable members to
influence the direction of Shine’s work and help to shape
the development of new services such as the Health Hub,
surveys, campaigns, and representing Shine at key events.
Kate Steele, CEO, says ‘The group’s contribution has
highlighted the value of membership engagement in helping
us to get the services right. In our golden year, we will be
actively working to make Shine even more representative,
so look out for developments on our website, Facebook
and future Togethers!’
For more information on the SAMC see
W: www.shinecharity.org.uk/samc
Let us take the strain
out of claiming
Claiming benefits such as Employment Support
Allowance, Disability Living Allowance for children,
or moving from DLA to Personal Independence
Payments can feel challenging. A Support and
Development Worker can advise and guide on form
filling, preparation for assessment, and information
for reconsideration and appeals.
E: firstcontact@shinecharity.org.uk
or T: 01733 555988 to be linked up.
You can also find helpful information at
W: www.shinecharity.org.uk/welfarebenefits
BAFTA
nomination for Ruth
Congratulations to Shine member, Ruth Madeley, for
her nomination for a BAFTA for her performance as new
parent Anna, in ‘Don’t Take My Baby’ (BBC3, July 2015).
Celebrating the news, Ruth said: ‘Playing Anna was a
privilege. I hope this film helps to break down some of
the prejudices society has about disabled couples with
children. My dream to be nominated for an award alongside
inspiring actresses like Sheridan Smith, Suranne Jones
and Claire Foy has become a reality. I am truly grateful
and flattered!’
… by becoming a Shine Board member. You will help to
ensure that Shine is well run, meet our legal obligations
and deliver even better services for our members.
Over the next 6 months, we will be seeking to appoint a
new Chairperson as our current Chair, Richard Astle, will be
standing down after 12 years of dedicated support for Shine.
Please help us to spread the word. If you, or anyone you
know, have the skills, experience and enthusiasm to take
on this role, then Shine would like to hear from you.
For more information on the Chair’s role, please visit
W: www.shinecharity.org.uk/aboutus/recruitment
to view the job description.
We also have three vacancies for Board members, including
a Trustee to represent Northern Ireland. Two of our current
members who were elected three years ago have expressed
a desire to stand again, but any member can stand for
election. At least 50% of Shine’s Board must have personal
experience of spina bifida and hydrocephalus, or of
supporting someone with one or both conditions. All trustees
also bring relevant expertise such as social care, health,
legal, HR or business experience.
For more information on the vacancies, please
contact Margaret Conner on T: 01733 555998 or
E: margaret.conner@shinecharity.org.uk
‘I strongly believe in the work that Shine does in helping
to enrich people’s lives. The opportunity to contribute to
the outstanding work that takes place by a large number
of individuals is very rewarding.’ Michael Brown, Shine
Board Member.
Help to shape the future of Shine!
Ruth and her dad celebrate. Photo: courtesy The Bolton News.
4. 4
Overview
A Golden Service
Shine’s Royal Patron, HRH The Duchess of Gloucester, GCVO, joined Shine
members, staff and supporters at Peterborough Cathedral to celebrate the launch
of Shine’s Golden Anniversary Year.
The Duchess, who has been our Royal Patron since 1973, met some of our members
who had travelled far and wide from all parts of England, Wales and Northern Ireland.
Shine Chairman, Richard Astle
attended the service and has taken
up the challenge of walking 50 miles
and an overseas trek to raise funds
for Shine in it’s 50th Year. Richard
added: ‘So much has been achieved
by the charity during the last 50
years. The services and support is
vital so if you are able to help us
during 2016 to make sure this is a
memorable year then we will very
much appreciate your support.’
To support Shine please visit
W: www.shinecharity.org.uk
or F: www.facebook.com/
ShineUKCharity
Brigitte Jones, Shine member of staff, hosting
Rex Moore, Sarah Florey and Tracey Shadwell.
5. 5
Amar Dugal and Darren Fower.
Angel and proud mum meet the Duchess.
Eric and Hazel Prentice, with Joan Pheasant.
Photos:ShaunPitchers
Tracey and Angel
Among those to the meet the royal guest was five year old
Angel, who presented the Duchess with a bouquet of yellow
gerbers, looked on by Mum, Tracey.
Tracey and Angel live in Hucknall, Nottingham. Angel is five, has
spina bifida and hydrocephalus. Angel and her family receives
support from Shine. She has had five vp shunts altogether - the
last one placed last year. She is a full time chair user and cannot
walk but it doesn’t stop her leading a full and exciting life! She
likes to go to the park, bowling, swimming, and roller skating –
a speed skater whizzes her around the ring in her wheelchair
and she loves it!
Angel goes to mainstream school, loves being with her friends
and is doing well. Angel loves football and is going to train with
the local team in Hucknall. She is not strong enough to play
in a match yet but she can join in the training sessions.
Proud Mum Tracey summed up their day. “We are planning our
first trip to Disneyland Paris this year and we are very excited.
Angel was very excited about dressing up and presenting the
flowers to the Duchess too!”
Ella and Nina Rose.
Reflections…
6. 6
Overview
Shine from within
Also at the Golden
Anniversary service, Shine
member, Carole Armour,
shared her thoughts on the
social impact that spina
bifida can have:
‘I didn’t have a social network.
My friends were at school. When
I went home for the holidays or
weekends I knew nobody… It’s
isolation. You are segregated
because of circumstances.
When I was at work we didn’t
mix socially afterwards. I was
17 and the staff were at least
30 years older than me. During
that time I also went swimming.
I was taken and returned
home – we didn’t mix socially
afterwards. I went horseriding
for about 11 years – we didn’t
mix socially afterwards. I did
archery at a regular club. Again,
we didn’t mix socially. I joined
Adult Education classes. We
didn’t mix socially.
It’s all isolation.’
‘Shine’s tailored events,
peer groups and Facebook
groups aim to ensure that
people with spina bifida and
hydrocephalus feel connected
and well supported. It’s not
just about being in the same
room or group, but knowing
there are people out there
who understand.’
(Shine Staff Member)
Carole
Jason Merrill gave the Bible
reading (1 Corinthians 12:12-
27, NIV) at Shine’s Golden
Anniversary Service.
Jason, a Parish Councillor,
has known Shine since he
was a child, as his parents
went to a local (then ASBAH)
support group.
‘In those days, everyone went
to Special Educational Needs
school. It’s more integrated
now. There was a cluster of
us the same age – we were
good friends in our teens and
twenties – so there was an
active movement for change,
and today there is a big over
40s movement in Shine.’
Has anything changed over
50 years?
‘I think society is more disability
friendly, but getting around
is still hard to do, especially
if you live in a village with
limited buses! Thanks to the
Paralympics and more disabled
actors, the younger generation
is more aware. The media and
radio could do more though…
‘I describe having spina bifida
and hydrocephalus as ‘a bad
back and water on the brain’.
Concentration can be
a challenge. I have good
and bad days. I have to pace
myself. If I have a busy week,
by Wednesday I want Friday
to hurry up and come. Rest
is good.’
Jason formerly worked for
ASBAH and has been involved
in disability matters for more
than 20 years. He was a founder
member of the Shine Adult
Members’ Council (formerly
‘Your Voice’).
‘I want Shine to be ever more
representative, so involving
more people with spina bifida
and hydrocephalus on Shine’s
groups is very important indeed.’
Jason
Shine members share their experiences of life with spina bifida
and hydrocephalus and the impact Shine has had on their lives.
7. Marcia Collins has known
Shine since childhood. She has
been both a Shine Adviser and
a Shine volunteer, helping to
support families, individuals, and
educating the wider public. During
the Golden Anniversary service,
Marcia shared what being part
of Shine means to her...
‘I love our charity. I love its history, its
foundation, of why and how it started,
how it has evolved, changed. I love
how many families it has supported,
how many individuals it has helped,
how many people it has educated and
informed. Trying to engage at a local
and national level on issues that are
important to us...
‘I love how hard the staff and
volunteers work, I see the dedication
and care they have for the things they
do and I give thanks a million times
over for their dedication. I love to see
families (who may never have heard
of spina bifida and hydrocephalus
and may be scared of the future for
their child) grow in strength as they
are guided through often the forest of
professionals, terminology, benefits,
health issues, education and everything
that comes from being disabled.
‘I love to see young people attend
independence courses, activity
weekends and see their self esteem
grow, their confidence develop. I most
love how they are able to identify with
other young people who may have
the same issues they do. I love to see
adults supported by our Advisers, to
have a voice in how our charity runs,
to be part of the online community. It’s
amazing how the Internet has opened
up yet another avenue to support its
adult members.
‘As we age, Shine has recognised that
we may have needs relating to living
with spina bifida in our 40s, 50s, 60s
and 70s and responded to it. I love
our charity. I see the care, the devotion,
the fundraising, the fight for equality,
the support and guidance it gives and
I am so proud to say that I am just one
member of many, many people who
also love our charity.’
Ali Mahraj shared in Shine’s
Golden Anniversary Service by
giving a beautiful performance of
Schubert’s ‘Ave Maria’. Here she
shares some ‘birthday’ thoughts...
‘This year sees the 50th anniversary of
Shine, formerly known as ASBAH. As
a 45 year old woman with spina bifida
I have accompanied the organisation
for a large part of that journey.
‘The world of spina bifida and
hydrocephalus have seen some
massive changes in this time – massive
improvements in treatments and in
the life expectancy of those of us who
previously would not have survived
past childhood. The organisation
has had to adapt alongside.
‘My primary recollection in my
childhood was of an organisation
that supported my parents to access
the best possible care and advice.
In doing so a new generation of
fiercely independent and empowered
children grew up. And so Shine today
promotes support for parents and
information networking and equality
for those with the conditions.
‘Advancing age and wear and tear
has brought new health issues to
face. Thankfully, I am not facing
these challenges alone. I have made
some wonderful friends through the
Shine40Plus group and we are also
informing and teaching professionals
about living into adulthood and
old age with the conditions. I can’t
overestimate how important that is.
Shine has recognised the changing
needs and provides specialist
support to GPs and community
teams nationwide. Happy Birthday
Shine and keep up the good work!’
Ali
Marcia
7
I see the care, the devotion, the fundraising, the fight for equality,
the support and guidance and I am so proud to say that I am just one
member of many, many people who also love our charity. Marcia
“
”
8. 8
News
Shine – My Lifeline
Normal Pressure Hydrocephalus can present a triad
of things affecting gait, incontinence and dementia.
It usually affects people over 60. When Sue Skinner
was diagnosed with NPH in her late 20s she felt
her life had ended – until she discovered Shine.
Now 50, Sue shared her story at the Shine Golden
Anniversary Service:
Sitting in a consultant’s office after
being told that I had Normal Pressure
Hydrocephalus was terrifying.
It was a condition which my Doctor,
my family and I, had never heard of.
Having three children and not knowing
what the future held, I felt alone and
out of control. I just had so many
emotions and unanswered questions,
which nobody could seem to answer
for me.
Being diagnosed midway through
my life, I found it hard to re-adjust.
I had been a schoolteacher, a job I
worked hard at and loved. But I had
to give this up after losing my job.
The condition affects my memory,
making me disorientated. I struggle
cognitively, and it also impacts my
walking. This meant I couldn’t teach.
What I needed was support and
a new direction, and I found this
through Shine. With their help, I now
face the future feeling more positive.
I volunteer for them and am also
a member of the Adult Members
Council, an achievement I am
extremely proud of.
My life has purpose again now, and, in
a way, I almost think Normal Pressure
Hydrocephalus was given to me so
that I can help others, something
which I thoroughly enjoy.
Northern
Ireland hosts
first Prenatal
Surgery
Conference
For professionals only
There have been amazing advances
in prenatal surgery over the decade.
This has brought new challenges,
risks and raised expectations for
spina bifida. A study day on Prenatal
Surgery for Spina Bifida will take
place on Tuesday 7th June at Queen’s
University, Belfast. The first event of
its kind, the day has been organised
by Shine’s Northern Ireland Director,
Cathy McKillop, with Drs Stephen
Ong and Jackie Cartmill. It will bring
together eminent specialists from
across Europe, including obstetricians,
paediatricians, neurosurgeons,
allied professionals and Shine’s
own specialist team. Delegates will
compare the benefits and risks of
open pre-natal surgery, fetoscopic
and standard postnatal surgery for
mother and baby, ethical aspects
and implications for future research.
Sponsored by MDI Medical, The
Perinatal Trust Fund (NI), Public
Health Agency and Shine. For
further information contact E: cathy.
mckillop@shinecharity.org.uk
Big Lottery
Wales supports
Shine Cymru
Shine Cymru
is delighted
to have been
awarded
funding for a
3-year project
from Big
Lottery Wales to develop even
more services for our members of
all ages, in all parts of Wales! Contact
E: sian.prince@shinecharty.org.uk
for more information.Sue Skinner sharing her experience.
9. 9
Tips for getting out and about
this summer
If you’re going on holiday, Shine has produced a
handy guide.
See W: www.shinecharity.org.uk/services/travel-advice
or email E: firstcontact@shinecharity.org.uk or phone
01733 555988 to order a copy.
Fancy a Cruise?
If you would love to go on a cruise, but think that having a
disability might be a barrier, wheelchair user, Doug Smith, who
has spina bifida and hydrocephalus, has written a book on how
to go about it. Read more at W: www.simplyholidaydeals.
co.uk/travel-blog/the-disability-to-cruise
Travel without limits – W: www.disabledholidays.com –
is another handy source of ideas and information about
going on holiday.
Planning a trip to
the seaside?
Thanks to Beach Easy
Wheelchairs who
have teamed up with
respective councils in
Pembrokeshire, Cornwall
and Brighton & Hove,
if you are a wheelchair
user you can access
more wonderful beaches
by booking an all terrain
wheelchair. Find more information at
W: www.beachwheelchairs.co.uk/beach-wheelchair-
hire.php
Love the Outdoors?
www.mountaintrike.com are creating a network of
Experience Centres around the UK where you can try
and hire their all-terrain Mountain Trike wheelchairs. The
latest venture is with Outdoor Academy, based in Reading.
Go to W: www.outdooracademy.co.uk/mountain-trike
or T: 0118 9833943 or E: info@outdooracademy.co.uk
to find out more.
Pilot project will make the world
of difference
Thanks to funding from the Welsh Government,
Shine Cymru will pilot a 3-year project on ‘early
intervention’ – which will enable us to employ a
full-time member of staff to work specifically with
parents who have received an antenatal diagnosis
of spina bifida, and families of babies and children with the conditions up to
the age of 10 years old. This work will be of huge significance in educating our
younger members, families and professionals of the importance of understanding,
and learning to manage, the conditions from a young age. Once the pilot
is underway, we will be seeking funding to deliver similar projects in England
and Northern Ireland.
At this time of year, Shine members often ask us for advice and information
on planning holidays and days out.
Find us… on social media
Share your photos, stories, news and
keep up with Shine’s news too!
10. 10
Health Hub boost thanks to
Peterborough Lions
The new Shine Health Hub, based
at the Peterborough office, provides
a free, one-stop health check and
advisory service for people
with spina bifida
and hydrocephalus.
The monthly clinics enable
adult members to meet
Shine’s health team – including
specialists in mental health,
continence management and
occupational therapy.
Thanks to a generous donation of
£4,500 from Peterborough Lions,
Shine now has a new bladder
scanner which will enable Shine’s
specialist team to spot urinary
problems which are a common
cause of incontinence, infections
and kidney damage.
Gill Yaz, Shine’s Health
Development Manager, said:
‘People don’t realise just how
serious bladder problems can
be for someone with spina bifida.
Thanks to this very generous
donation from the Peterborough
Lions Club, the new bladder
scanner will help Shine’s specialist
team to help our members manage
their condition and prevent further
problems from arising.’
Bill Peacock, President
of the Peterborough Lions
Club, commented:
‘I have never been touched so
emotionally as I was on seeing
the work of Shine.’
Contact
E: robin.barnatt@shinecharity.org.uk
or T: 01733 421355 to find out more
or book an appointment.
Shine’s services aim to ensure ease of access, independence and good
support through times of change for anyone with hydrocephalus or spina bifida.
Health
L-R: Gill Yaz, Kate Steele, Robin Barnatt, and Collette Torrance from Shine show Bill Peacock (President) John Cheetham (Vice-President) David Pope (Secretary and
Treasurer) of Peterborough Lions how the new scanner will work.
11. Val’s Hub Story
Shine event –
Independent Futures
5th-6th November 2016,
Peterborough
Independent Futures is a two-day
residential event, skilfully designed
for a small group of Shine adult
members to discover ways to
be more independent and feel
more confident about trying new
things. The event provides a social
opportunity to meet new people
in a relaxed environment.
For more details about the
programme and how to book,
contact Maureen Jobson
on T: 01733 555988 or email
E: firstcontact@shinecharity.co.uk
Valerie Allen was told that she
was only supposed to live for
three months. Now 66, Val’s full life
has included studying at college,
working full time for Nottingham
County Council, being a paralympic
athlete and winning a world
championship silver medal for
bowling (women’s pairs).
Val, who has spina bifida, recently
came to the Shine Health Hub clinic
for a full check-up, accompanied
by her friend and neighbour, Ann.
There she had a range of checks
with Shine’s specialist clinic team,
including blood pressure, weight,
lifestyle and mental health.
Beaming broadly afterwards,
Val shared her experience:
‘Coming here gives me confidence
– it’s like having an MOT – you can
have all your checks in one go.
You are treated as a whole person,
rather than in ‘bits’. Here they get
to know all about me.’
Val drives her own vehicle from
her wheelchair, which won’t fit
in Ann’s car.
‘A bonus is the parking. There is car
parking nearby [behind Beales] with
plenty of space, so it’s easy to
get the wheelchair out.
‘Some of us are getting older.
We need to think about the future.
There are things I need to do – I
know I need to lose weight and
strengthen my arms. Here you
can get weighed. There is also a
kitchen where you can try different
equipment and practical tips, such
as buying a new kettle so it doesn’t
strain my shoulder.
‘If I had an accident, a spinal injury,
I’d be sent to a special centre,
but because I was born with spina
bifida, there was no special centre.
When I was signed off by my
consultant that was it – we just
had to get on with it!
‘Expectations about disability were
different back then; I think attitudes
are changing. But there is a lack
of information, knowing where to
go for help. It helps to go through
everything together here. Knowing
you are not alone. Knowing where
to get information. Knowing there
is someone there.
‘Even though things are tough you
can cope. I can go home happy;
I’m alright.’
Valerie Allen meets Gill Yaz, Shine’s Health Development Manager, for her Health Hub check up.
11
12. Celebrate with Shine
Here are just some of the Golden
events that are coming up this year!
June 7th – a study day on Prenatal
Surgery for Spina Bifida will take place
at Queen’s University, Belfast – the first
event of its kind! (See page 8)
June 16th – a beautiful flower bed design
of Shine’s 50th logo will be on display
at Erewash, Derbyshire, with thanks
to Erewash Borough Council and the
inspiration of Shine member Jackie
Moore and husband Clive.
August and September – Shine’s Golden
Treasure Hunts will be taking place
around the country. Anyone can take
part – Shine members, community
groups, schools, businesses. Contact
E: shelley.green@shinecharity.org.uk
to get involved in a fun detective trail!
October 7th – Shine’s Family
Opportunities Weekend, Holiday
Inn, Coventry, is designed for families
with a child 0-5 years old, who has
spina bifida and/or hydrocephalus.
The weekend provides learning and
social opportunities for the whole family,
including siblings, in a safe, friendly
environment. £190 per family. Contact
Denise Richardson on T: 01132 556767
or E: office@shinecharity.org.uk for
more information.
October 8th - Shine Sponsored
Firewalk, Thorney – impress your family
and friends for a great cause! (Training
is given before you tackle the 12 foot
fire pit!) Cost: £30. Contact Cheyenne
on T: 01733 421307 if you would like
to take part.
October 24th-30th – Spina Bifida and
Hydrocephalus Awareness Week –
events will include lighting up venues
around the country on World Spina
Bifida and Hydrocephalus Day
(25th October) to raise awareness –
we will post details nearer the time
on W: www.shinecharity.org.uk or
F: www.facebook.com/ShineUKCharity
November 5th-6th – Independent
Futures 2016, Peterborough
(see page 11). For further information
contact your Shine Support and
Development Worker, or contact
E: maureen.jobson@shinecharity.org.uk
or on T: 01733 555988.
Golden Events
A quiz is a great way to combine fun and fundraising – and show how bright
you are! We’ve made it easy for you to host your own quiz for Shine with
the Shine Bright Quiz pack. We’ve even included a Shine round! You can
download the quiz questions, answers (keep them secret!) and scoresheets
at W: www.shinecharity.org.uk/quiz and for any additional help or advice
we are here to help at E: fundraising@shinecharity.org.uk
Join us in 2016 for
Wear Yellow and Shine!
Go loud, feel proud and wear yellow – and help Shine
celebrate its 50th year!
We’d love it if you’d join us to make Shine’s Golden Anniversary year extra
special with some fun and fundraising to support everyone with spina bifida and
hydrocephalus. Hold a wear yellow event at your school, college, workplace, care
home, nursery – it works anywhere! You can wear yellow, bake yellow, ride yellow,
tattoo yellow, whatever works for you. Maybe add a touch of gold too?
And don’t forget to share your photos on Facebook! To find out more go to
W: www.shinecharity.org.uk/WYAS or contact E: fundraising@shinecharity.org.uk
The is here
‘Our Heritage’ Exhibition launches
in July
Discover the pioneers and people of a hidden history…
Spina bifida and hydrocephalus have been around for
thousands of years and have an amazing but often ‘hidden’
history. A new exhibition: Spina bifida and Hydrocephalus:
Our Heritage will bring this to life through the eyes of its
people. Whether a pioneer of medicine, a famous author, a
grieving father, or one of the thousands of people who have the
conditions, they all have stories to tell. The exhibition will launch in July,
with an open week at Shine’s national office in Peterborough. Look out for
details on our Facebook and website and if you would like to come, please
contact E: val.stokes@shinecharity.org.uk or T: 01733 421356. (The exhibition
will be closed for special events, so please check before you travel.)
Please join us for the
Shine Members’, Family and Friends
Big Birthday Bash
Balloon Races!
30th June 2016, at noon
Three interactive balloon races: Belfast � Cardiff � Peterborough
An exclusive Shine 50th Birthday event just for you, your family and friends!
Great prizes to be won, including champagne!
For more information go to www.shinevirtualballoonrace.com
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