Tel: 01308 426372
Registered Charity No. 249338
The Shine50Plus project, funded by the Big
Lottery, in conjunction with The Daily Mail as
part of their Silver Dreams Programme, is now
well under way. The aims of the project are to
find new ways of connecting people with spina
bifida and/or hydrocephalus, who are aged 50
or over. This is a pioneering generation with
much to offer each other in terms of support
and information about getting older with these
conditions. Hopefully by sharing practical
tips and experiences, people can have more
confidence in managing the future.
The project is driven by a dedicated group of
Core Volunteers, Shine members from across
the country who have come together twice so
far (in Peterborough and Coventry), to plan and
work on the projects’ activities. There is also a
group of over 100 members who have said they
would like to get involved. These are some of
the project’s activities:
Shine50Plus Facebook group
This lively closed group now has nearly 60
members, all of whom have hydrocephalus and/
Silver Dreams News
Welcome to the second edition of Silver Dreams Newsletter! - written by and
for Shine members in the 50 plus age group
The over 50s are making their voices heard!
or spina bifida, many of whom check in daily to
share information and give each other support,
both practical and emotional. Everything gets
discussed in private, from bowels to benefits,
holidays to hairdressers, cats to craft activities
– whatever it is that people want to talk about.
The group is looked after by Sue Bennetton,
one of our Core Volunteers, together with Angie
Coster, Project Coordinator
Forum, Crafts and
Shine50Plus Website – our dedicated
volunteers Steve Wilkinson and Janet Handley
have worked hard to develop ways for people
to connect on our very own website www.
Crafty Silver Dreamers
Knitting and card-making to raise funds for
Shine are two of the ways our volunteer Jackie
Moore encourages people to get involved and
make friends through their shared interest in
Information on looking after
yourself with spina bifida and
guidelines for GPs
vital information for people with spina bifida
is being put together by our Core Volunteer,
Patricia Adley working with Gill Yaz, Health
Development Manager. Working closely with the
staff at the Spina Bifida Clinic at Chelsea and
Westminster Hospital, guidelines on what GPs
should be doing to provide their patients with
better care should also be available soon.
Telephone Friendship Groups
Core Volunteers Martin Fenney, Helen Robinson
and Liz Potts have trained as Tele-friendship
Group Facilitators with an organisation called
Community Network. For those who do not use
the internet this is a really good way to meet up
with others and share experiences
The impact of hydrocephalus/
spina bifida on the brain
Another Core Volunteer, Nick Woodward, is
going to be finding out more about the cognitive
aspects of ageing by interviewing neuro-
psychologists from Westminster University
specialising in this area of work. We are hoping
that some practical strategies that people can
use will come out of this.
Members have been providing evidence for
Shine of their experiences of healthcare as older
adults with spina bifida. At their suggestion a
standard letter has been drawn up which people
can use to send to their MPs to campaign for
NHS specialised care
Continue on following page
Core Volunteer Group Meeting in Petrborough
A word from the
Chair… by David Phyall
I was puzzling over the newspaper crossword,
“GGES (9, 4)”, when the phone rang last
September. It was Angie Coster from Shine who
had been given my name by a colleague, as
someone who might be able to help with the new
Silver Dreams Project for the next 18 months.
Well, I thought to myself, it’s time limited and
I have just stood down after many years as a
Trustee of a large charity, so I could do this. (I am
mindful though that Income Tax was introduced
as a temporary measure to pay for the Napoleonic
wars and that 18 months could end up being
longer!). Several phone calls took place and then,
“Oh, you sound just the sort of person to chair our
Core Volunteers group”, said Angie.
What have I let myself in for? I thought as I
prepared for our first meeting. I needn’t have
worried. It was a pleasure and inspiration meeting
the other Core Volunteers at our first meeting in
Peterborough in January; all of them, like me, over
50 and with spina bifida and/or hydrocephalus.
We ended up with some working groups: crafts,
IT networking and involvement, medical (looking at
providing advice for people with spina bifida and
hydrocephalus and for GPs), conference planning,
and also a group who are going to be connecting
people through telephone conference calls.
We had our second meeting in May in Coventry.
The progress of the working groups was
impressive. The determination, dynamism, and
productivity continue unabated. If this were a
private company, it would be growing at a pace
and would be most profitable. Indeed, so much so
that much larger organisations would be looking
to take it over!
It is a pleasure and a privilege to chair such a
group of amazing volunteers and I am confident in
us achieving much in the months to come.
Ah, yes, just got the crossword clue – “scrambled
The project has assisted several people to start
using the internet by providing a laptop, tablet
Sue Skinner has recently joined the Core
Volunteer Team and was interviewed on local
radio in Coventry about her experiences of living
with Normal Pressure Hydrocephalus
This is to be held over the weekend of 1st/2nd
March 2014 in Coventry – venue to be
confirmed. Dr Richard Morgan from Chelsea
and Westminster Hospital will be the keynote
The over 50s really are beginning to
get their voices heard now!
Continue from previous page
l Join the Shine50Plus Group on
l Become a Crafty Silver Dreamer – knit or
make cards to raise awareness of and
raise funds for Shine
l Go on our website
and join the forum
For more information on getting involved
with any of these activities contact the
Project Coordinator, Angie Coster on
T: 01308 426372
I’m now a full-time wheelchair user, but for many
of my 60 years living with spina bifida, I walked
using sticks, preferring not to use a wheelchair.
Despite the challenges using a wheelchair can
bring, such as access to buildings, transport,
etc., overall my manual wheelchairs have given
me much more freedom to get out and about,
and enjoy life to the full.
In my work I run training courses to educate
people about living with a disability. In almost
every course, someone knows a friend or
relative who refuses to use a wheelchair. I can
understand their resistance to a certain extent.
I’ve experienced, as I’m sure many of you
reading this have too, patronising attitudes and
assumptions about our mental capacity. Who
has been in a situation where someone asks
the person you’re with what you want rather
than you directly? The “does he take sugar”
Who has been unable to enter a building or
use toilet facilities because the business hasn’t
even thought about their legal obligations under
the Disability Discrimination Act / Equality Act
to make reasonable adjustments to remove
physical barriers, which was a requirement
which came in nearly 10 years ago?
Things have improved over the years as more
people encounter wheelchair users. But there is
still a need for greater understanding, so more
people will be prepared to use a wheelchair
alone or with friends, relatives or a carer to get
more involved in activities outside their homes.
Estimates vary, but recent figures suggest
that there are 1.3 million people in the UK who
currently use a wheelchair. As people get older
and mobility issues become an issue for many,
it’s imperative that wheelchairs can be available
for more people and the stigma associated with
using one is eliminated. Education about life in a
wheelchair is important, and the best people to
provide that are existing users.
I have a motto on life which is “If I can, so can
you”. I hope that as we share experiences and
information through this Shine50Plus Silver
Dreams Project, those of us who happily use
and benefit from a wheelchair can help those
By Alan Cross
Like many people in our age group, I need
to keep as fit as I can and watch my weight.
I am lucky in that I have managed to find a
specialist gym at Queen Mary’s Hospital in
Roehampton, named after Douglas Bader,
the famous World War 2 pilot who lost both
his legs. This gym is aimed at people having
rehabilitation, for instance after a stroke or
an accident, but it is open to the public.
I found out about it through a friend and
have been going there for about a year. It is
exactly the same as any other gym, but the
majority of equipment is accessible to those
in wheelchairs or with limited mobility. It costs
£10 a year to join and then a couple of pounds
for each session, so it is not expensive and
who are resisting doing so, perhaps for the
reasons I outlined earlier.
In 2008, Steve set up International Wheelchair
Day which is 1st March each year. The aim is
to celebrate this freedom and reflect on the
challenges. For more information see
To use a wheelchair or not to use a wheelchair…
that is the question! By Steve Wilkinson
I usually go between one and three times a
week. It is also a very sociable place to visit
which makes it enjoyable.
I used to go to the local YMCA gym, which
was also good value. Quite a few gyms these
days have adapted equipment and trained
staff to help people with all types of disability,
make the most of what is on offer. There were
more muscled men at the YMCA but I never let
them get to me. I used to think “I’d rather look
like me, than look like you!”.
I would suggest to everyone that if they can,
to check out their local gym to see what it
is like. I have certainly got fitter over the last
two years since I have been going to this one,
although I have to say I have not really lost any
weight – yet! And there is always the social
aspect to look forward to, if you are lucky.
I have just returned from a fantastic holiday
at the Maison des Landes Hotel in Jersey. It
is a specialist hotel catering for guests with
disabilities. I kept a diary so that I would be able
to let other people know what to expect, as they
may want to consider this type of holiday.
l Saturday – We flew out on Flybe who
have collapsible arms on the aisle seats so I
was able to slide transfer. Met at the airport by
a member of the hotel staff,
and offered refreshments on
arrival at the hotel. Our room
had a profiling bed and hoist
with an en-suite wet room,
and there was a safety alarm
system. The hotel also had a
heated hydrotherapy pool.
l Sunday – We were
taken into town in the hotel’s
own minibus. We got back
and played pool (well, tried!).
Quiz night – our team only
scored 8 out of 20, but still a
l Monday – We
collected a sandwich picnic
lunch (provided every day if
A fantastic holiday in Jersey - by Lyn Jones
you were away from the hotel). Trip to St Helier
– really lovely beaches. Then taken to Ten Pin
Bowling in the evening, which again was a great
l Tuesday – Visit to Pearl factory. Then
taken on Island tour with a stop-off at a farm
where. Tonight was a Country and Western
evening with guest entertainers, which was
really good fun.
l Wednesday – Another Island tour in
the minibus. We visited a huge indoor market.
Tonight was a themed Italian night.
l Thursday – Visit to the Gerald Durrell
Conservation Zoo, which was fab.
l Friday – Visited the Jersey Hospital
Tunnel which was very moving as it showed
what it was like for the Islanders when the
Germans occupied Jersey.
There were other trips available and the hotel
was also happy to try and accommodate
requests if people wanted to go somewhere
special. I would love to go back to do all the
things that I didn’t have time to do. Nothing was
too much trouble for the staff and I would highly
recommend the place.
For more information visit
or call 01534 481683
My personal shopping
experience – fantastic!
By Pat Coley
I don’t like clothes shopping at the best of times
but I recently needed to go for lingerie fitting,
as we ladies do from time to time. Dreading the
whole experience as usual, I braved my local
Debenhams and ended up at their suggestion
booking a Personal Shopper.
I would never have thought of doing this in
a million years but I have to say it was an
extremely positive experience. I was met at
the entrance and taken in the goods lift (no
Hi, my name is Sue
and I thought I’d
just share a little
about myself with
you. I’m a Mum of
three lovely young
adults and have a
of 28 years. I was
the age of 29 and
it came as quite a
shock having never
heard of it. It is also a very young age to have it
diagnosed as it is usually a condition affecting
After doing a lot of research and coming into
contact with Shine, I began to understand
more about its effects which explained what
was going on with me. At the time, I was a
Reception/Year 1 Teacher, specialising in
children with special needs; a job I absolutely
loved. I continued in my job until my walking,
incontinence and cognitive skills just made it
impossible for me. One day, I’d set my little ones
up with a very simple sequencing task. When I
put an example on the board, one of them put a
hand up, asking what it was. “Mrs Skinner, but
that’s back to front”. We did laugh but it became
very upsetting when I couldn’t remember the
children’s names or parent’s. In the end, I had to
finish - leading to a huge sense of loss.
Three years after giving up work, I had a
programmable shunt fitted and this has
improved my quality of life immensely. I’m still
what I choose to call very ‘dizzy’ but I blame
that on being blonde...! I have a dreadful
memory and no sense of direction whatsoever
and forever leave things on around the house.
My son still laughs after I’d lost my glasses for
several days; he found them in the freezer along
with some knives and forks. We still laugh about
it now. He will often say when we cannot find
something, “if Mum’s had it, check the freezer!”
The joys of what we live with… However, I love
my life and make the best I can of every day.
I’m so looking forward to being part of Silver
Dreams. For me, it’s a way of giving a little
back after all the years of support I have had
from Shine. Without them I’m not sure how
I would have coped. So if I can help others
to reach out to each other through various
forms of communication, it would be amazing.
Hydrocephalus can be an extremely lonely
condition. I know myself living with NPH, I
struggle so much to make sense of the simplest
of things and to have someone on the end of the
phone or computer that understands how we
feel, can make a world of difference.
A little bit about me…
by Sue Skinner one of our volunteers with Shine50Plus
Continue on following page
room for mobility scooter to manoeuvre into a
passenger lift!) to a room where I was offered
complimentary tea or coffee, and given the
impression that nothing was too much trouble.
I was worried that this sort of service was
reserved for the rich and famous of this world,
and the fact that I might want sale items and
have only a small budget would not go down
well. I couldn’t have been more wrong.
As well as my lingerie items, I was able to try
on and purchase other clothes that I needed,
Hi my name is Jackie; I have hydrocephalus and
am a volunteer with the Shine50Plus project.
Being involved with the project has given me
the opportunity to have contact with some very
talented and interesting people. I really enjoy
crafting, having started card-making after my
first shunt operation, and I set up the Crafty
Silver Dreamers group so we could link people
over 50 who are into crafting activities. I also
got involved in helping out at a Shine Family
Could you be a Crafty Silver Dreamer?
By Jackie Moore
Opportunities Weekend for young children and
their parents which gave me more confidence. I
have made some great friends through this and
feel a lot less isolated with my condition.
It was evident from the Shine50Plus Facebook
group that there was a lot of interest in crafting,
so I set up a Crafty Silver Dreamers group
on Facebook. Current members are posting
pictures of their work, are encouraging each
other and chatting. It is really great fun to be
part of! I am pleased that I can put my skills to
good use, giving me a purpose, and hopefully
inspiring other members, who may be sitting at
home not sure of what to do with their day, to
have a go. However, people don’t have to be
on the internet to join in. We would love to have
some input from members who are not online.
We have two activities to get involved in at the
moment, both of which are going well. We are
knitting a blanket made with 8 x 8 inch squares
sewn together, and also making 3D decoupage
cards with images of the Shine children’s
character – Benny Bear. These will be for sale
at Shine events and in the charity shops. If
you are interested and would like more details
about becoming a Crafty Silver Dreamer please
contact me at
E: firstname.lastname@example.org or call Angie Coster,
Project Development Coordinator on
T: 01308 426372 or Lynn Hart, Operational
Admin Assistant on T: 01733 421321.
We look forward to hearing from you!
all in the comfort and unhurried atmosphere of
my own changing room, and looked after by my
personal shopper. When I was unhappy about
the cost or colour of anything, she went away
and came back with alternatives. I even bought
a pair of jeans which my friends are in disbelief
So…don’t be put off the shopping experience
like a lot of us with mobility difficulties – go
for the VIP treatment if you can and book
a Personal Shopper. This has certainly
improved my shopping experience and is to be
Continue from previous page
I was born
at all. For
as a social
had a lot
with a range
but I had
life balance wrong, because work was so
exhausting, I had no time to develop a social
life. At the age of 50, I began to think about this
issue, but working part time would have had
huge financial implications.
Just before my 51st birthday, life, and spina
bifida, took a hand. I developed an abscess
which burst leaving a massive cavity. I was
bed-bound for two years and had to take early
In 2010, I was fifty three and trying to rebuild
my life, but I was very isolated. I tried adult
education classes and enjoyed them, but made
no real friends.
In the spring of 2011, a local church was
advertising the Alpha Course. Alpha was started
by a London vicar who wanted to provide an
opportunity for young professional people
working in his parish to explore Christianity.
Alpha has moved far beyond those wealthy
upper class roots, and there are now Alpha
courses in a huge range of setting and
I had always considered myself to be a
Christian, but did not attend church and didn’t
know what I believed. I had wanted to do an
Alpha course before but it was one of the things
I put off during my working life.
My Alpha course started in April 2012 and I
became a Christian as a result. I am now a
member of a very active church and the sense
of belonging is vital to me. Our Sunday service
is both a chance to worship and to meet friends.
I attend other activities during the week and
have helped run an Alpha course!
Alpha is great for anyone who feels nervous
of groups. It involves watching a DVD and
discussion in small groups. People are
encouraged to contribute to the discussion, but
you stay in the same group for the duration of
the course, so you get to know people really
well and, therefore, feel safe.
The Alpha slogan is ‘explore life’ and life is worth
exploring so give it a go!
The Alpha Course
– by Janet Handley
How I became a
poster pin up girl
– by Karen Biddiss
I got involved with Access Dorset after receiving
a letter from my Housing Association asking
for disabled people’s views about their needs.
I have spina bifida which is why I was asked.
There was a feeling that officials did not have
“disabled people skills” and that Access Dorset
could teach them how to help and support
disabled people. My experience along with
others was that because council officials don’t
understand our needs, they ignore us and hope
we will go away.
So I started going to panel meetings where we
met with different council officials. I was paid a
small amount of money to attend. I even ended
up as a model on a local poster advertising
Continued on next page
(Shine, as it
now is) when
I was 7 years
old back in
1969. It was
as ‘Just a Mum’ giving birth to me, because
she wanted to give encouragement to all new
mothers of babies born with spina bifida. I
always knew about this article but was never
allowed to read it. The Shine50Plus project staff
tracked it down and I must say, reading it 44
years later, I am filled with mixed emotions. Both
my parents have now passed away; my Mum
from Alzheimer’s in 2007, another “road” we had
to travel down, reluctantly.
The intervening journey from 7 to 51 has
been one of discovery, achievements,
disappointments and questions. At age 11, I
went to Treloar College, a specialist school.
Academically I did OK, but at the expense of
emotions and relationships, suffering separation
and rejection issues which, although unfounded,
still live with me. At the age of 17, I was ready
to go to art school but couldn’t face another 5
years away from home and so got a job instead,
leaving home a year later.
I moved from bedsit to bedsit, went on an
office training course and worked in London’s
East End for four years which was rewarding,
but physically wearing. I did a number of other
jobs but by the age of 35, the years of rushing
around on crutches had taken its toll on my
knee and hips, and they began to let me down.
Furthermore, staring at a PC for hours each day
played havoc with my shunt, until in the end I
had to stop working.
A deep sense of failure lingered for some years,
followed by quiet acceptance. I couldn’t help
but think I had failed my parents. Regretfully, I
never married or had a successful relationship,
thanks to those old “demons” I mentioned
earlier. But I am the happy and proud uncle to 5
grown nephews, who have all succeeded in their
Nowadays, I live life quietly, in a small comfy
council bungalow with my cat, 4 snakes and
a tarantula! I still look after myself, I’m a good
cook and am still very into art. Considering the
original bleak outlook my parents were given
when I was born, back in 1961, I like to think I
have done OK. To the parents of today’s kids
with spina bifida, I would say – it is going to be a
long hard road, but resist the urge to carry them
all the way. They can and will make it. I did.
Further Down the Road! – by Bob Slaughter
Access Dorset in my newly adapted bathroom
that they helped me to get. They nicknamed me
their pin-up girl and now lots of people know
who I am, but I don’t know them!
Access Dorset was just getting going as a
user-led disability organisation, and eventually I
joined the Committee for a year. I was the only
person from my area in those early days, and no
one had heard of us and what we were doing.
Now they do and there are lots of members from
my area who have been badgered by me to get
We have been trying to establish an
Continued from previous page Independent Living Centre in my town, where
people can drop in for advice or a chat over
a cup of tea, and also see different types of
equipment that might assist with daily living.
Disabled people often don’t know who to ask
for things in the first place, and this is where we
were hoping to fill the gap. We may not get the
centre, but we have raised awareness of the
needs of local people with disabilities.
My involvement has given me a new lease of
life. I would say to anyone - see if there is a local
disability organisation in your area (you can do
a Google search or call your local council) and
get involved if you can. We all need somebody
in our corner and that’s what disability
organisations are there for.
valuable of all, I have received instruction from
a Continence Nurse and am now quite happily
self-catheterising, which has brought great
relief as regards the bladder problem which
soon set in after my initial loss of mobility. The
accompanying bowel issues have yet to be
Purely by chance, I discovered a specialised
disability gym at the Chasely Trust, Eastbourne.
I have to pay for sessions there myself (I’ve
become used to it!) but at £10 per week, I feel
it is money well spent and unlike NHS physio, I
can do as much or as little as I wish.
Dr Richard Morgan of the Chelsea and
Westminster Hospital holds spina bifida clinics
and he did warn me that if local services failed
to provide prompt, joined together treatment for
my condition, it would deteriorate rapidly, which
is exactly what happened. My main bone of
contention is that although I am now receiving
some sessions of treatment as described above,
some privately funded and some on the NHS,
there has been no cohesive coordinated care
plan to address my full condition, pulling all of
these strands together.
Shine is currently campaigning for more
specialist healthcare for people with spina
bifida. You can help by writing to your MP.
Contact us for a copy of the sort of letter you
Over a year ago, aged 62, I completely lost the
use of my legs. As a lifelong spina bifida person,
I had always felt fortunate that apart from a
slight limp, progressing from one to the use
of two sticks in my late fifties, I had enjoyed a
perfectly normal life. All that stopped suddenly.
The degree of support, treatment and advice I
have received since has been patchy, to say the
least. I was given exercises to try at home but
no access to the specialised gym equipment
that was available at the local hospital. I paid
privately to see a neurology consultant who
referred me to the National Neurology and
Neurosurgery Hospital in London. They offered
me a two week in-patient stay for intensive
physiotherapy due to begin in September 2012.
I didn’t hear anything until April 2013 by which
time things had moved on and I decided against
Having been refused any substantive help
from the local authority, I had to spend a small
fortune on a stairlift, electric bathing seat,
small indoor electric wheelchair and extensive
concrete ramps as well as adaptations to my
steeply sloping garden to enable wheelchair
access. I had no proper advice and later found
out I had spent £1000 on a wheelchair not right
for my needs.
On a positive note, I had District Nurses to
attend to my pressure sore/neuropathic ulcer
resulting from sitting all day (my wife does
this now to save us waiting in for them). Most
Ups and Downs (A Journey into the Unknown)
by John Cornelius
l Make a recommendation on the website -
tell others about the best accessible
places to go where you live
l Tell us how you look after yourself if you
have spina bifida. What keeps you well?
What health advice do you wish you’d
had when you were younger? What health
advice do you think younger people with
this condition should have?
Coping with social
occasions…an email to
my family and friends before
the event by Fraser Hughes
I would like to attend the family get together,
but want to warn you in advance that
because of my hydrocephalus I find these
occasions both enjoyable and difficult, for
the following reasons:
l I easily get confused, and am generally not
able to cope with two or more people
talking to me at the same time, loud
music, repetitive noises, especially drums,
car indicators, etc.
l My memory is often poor, and I have
extreme difficulty in remembering large
parts of my childhood, specific events on
demand, or even at all.
l When someone asks me a question, I can
often answer, but it can at times take
several minutes or more for me to recall/
capture the words that I want to speak,
when I do know the answer.
l Please can everyone wear a name badge?
Whilst I know everyone, it can take me
some time to process the information and
produce the correct name (I have now
learnt to say to people who I know in the
village I have lived in for 30 years, “I know
who you are, where you live, and who your
children are, but please could you remind
me of your name?”).
l If you are telling me something important,
please also tell my wife, or write it down
for me in my notebook (which I carry in my
‘manbag’, which contains my essentials
which I may otherwise forget). Please do
not rely on my memory for anything.
l Whilst I look ‘normal’, and can sometimes
walk short distances without walking
sticks/a rollator, I am not able to carry safely
drinks/food or anything breakable, and
easily trip up, which I do frequently, and
am quite clumsy. When tired, my speech
and walking can resemble that of someone
who is drunk.
l I frequently forget why I am going upstairs
or into a room and due to bouts of ataxia,
sometimes when I am talking to someone,
I start to walk backwards; not because I am
bored, but because my legs have a mind of
l Please understand that I have great
difficulty with modern technological items. I
can use a PC but do not use Facebook,
Twitter, iPhones, iPads or even a laptop.
They are too confusing for me and too
easily lost or broken. Nor do I text, as it is
far too fiddly for me.
Otherwise, I am looking forward to seeing
l Sign up to be in of our new Telephone
l Get one of our standard letters to write to
your MP asking for better specialised care
for people with spina bifida
l Write something for the next Silver Dreams
l Register for the first ever Shine national
conference for people aged 50 or over, to
be held near Coventry the weekend of
1st/2nd March 2014
For more information on getting involved
with any of these activities contact the
Project Coordinator, Angie Coster on
T: 01308 426372
In the next newsletter…
l Members review of vacuum cleaners
l Caring and co-caring – is this you?
l Helping Others: Helping Ourselves – the first ever national conference
for people with spina bifida and/or hydrocephalus in the 50+ age group
To get involved
or to find out
more about the
Angie Coster, Project
T: 01308 426372
Groups – by Liz Potts
Some Shine members in the 50 plus age group
may find it particularly difficult to get out and
about, or to travel long distances because of
health or mobility issues. Many say they would
like to share experiences with others who have
been living with spina bifida and/or hydrocepha-
lus. Not everyone is on the internet. Finding
ways to connect people is one of the main aims
of the Shine50Plus project.
We are about to start up our first Telephone
Friendship Group and would like to hear from
you if you are interested in meeting others over
the telephone. The groups will be run by three
of our Core Volunteers, all of whom have spina
bifida and/or hydrocephalus themselves and
have had special training to talk to people over
the phone in a group.
The way it works is that the group “meets”
once a week at a certain time, say 3.30pm on
a Wednesday afternoon. Everyone in the group
(between 6 – 8 people) waits by their phone
at this time and receives a call. They are then
on the line together and can talk to each other,
helped by the volunteers. This could be a great
way to make new friends, share information and
offer support to others in a similar situation.
Interested? Please call Liz on 07789 616469
or Angie on 01308 426372