theBulletin Sept-Oct 2013 - British Polio Fellowship

Transcription

British Polio
The official magazine of The British Polio Fellowship
September/October 2013
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Message from the
Chief Executive
t is with enormous pleasure and pride that
we mark the ending of British Polio Month in
this edition of The Bulletin. We wanted to be
ambitious in what we could achieve in raising
awareness of Polio and Post Polio Syndrome
(PPS), but none of us imagined that we would be
able to pull together such an effective package
of events and activities as has just taken place.
From the first event – the Swimming Gala – to
the closing of British Polio Month, we benefitted
from tremendous support from so many people.
Our new Ambassadors – QVC Presenter Julia
Roberts, Paralympian athletes Anne Wafula
Strike and James Crisp, film-maker and author
Tony Klinger and author Gareth Williams –
backed us all the way. Ex-England and Crystal
Palace footballers Geoff Thomas and John Salako
and veteran Paralympian John Watts also helped
to make the Gala such a success.
But as well as celebrities lending their support,
there was a huge amount of work done on the
ground to organise the events and execute the
highly effective ad campaign, using members’
photos to highlight the continuing effects of
Polio and PPS on the side of an advan. A large
number of members played their part, many
working tirelessly at local fundraising events.
The media and publicity campaign also achieved
more than we could have hoped for. We now
have new partners wanting to work with us
The British Polio Fellowship
+
Contents
News from Central Office Members’ survey
3-8,
16-18
9-10
British Polio Month
11-15
Fundraising news
19-27
Support Services 28, 33-43
Health survey
29-32
Book review
44-46
Our charity partners 47-49
Branch & regional news 50-54
Your letters
55-56
Holiday programme news from central office
I
By Ted Hill
57
History corner
58-60
Advertising 61-62
Contact details
63
My way
64
3
news from central office
+
and support us going forward. 26 October will
be the very first Post Polio Syndrome (PPS)
Day, organised by Winchester Rotary Club, and
Ambassador Tony Klinger has agreed to make
three documentaries highlighting Polio and PPS.
As we approach our 75th Anniversary in 2014,
The Fellowship is in very good shape to drive the
messages home to better support our members.
You’ll find more details on all these events and
developments in the following pages.
Thank you
I would like to thank each and every person
who has played a part in British Polio Month –
our Ambassadors, Paralympian and celebrity
supporters, the incredibly hard-working staff,
our PR agency Beyond PR, and above all, you,
the members. It is a cliché but true nonetheless –
we could not have done it without you.
Please continue your support
Building on the success of this year, we have
big plans for our 75th Anniversary. These
include a rolling out of PPS Day, a fundraising
Golf Tournament, and the launch of the three
documentaries. I would like to encourage
as many members as possible to share their
experiences with Tony and his film crew –
nothing is so persuasive as real people telling
their own stories.
Medical Alert Cards
The Medical Alert Cards published in the last
Bulletin were very well received and I want to
thank the Scottish Post Polio Group for their
kind permission to use their card as a model
and guide for ours. If you did not receive a card
or want an extra one, contact Central Office.
Richard Flint Awards
A new competition for people living with
Polio will be launched next year – the Richard
Flint Awards. There will be three annual
competitions – one for art, one for poetry, and
one for photography. Each competition will
have cash prizes for first, second and third
4
places (£250, £150 and £75 respectively).
Details will follow in the next Bulletin, but it’s
not too early to start thinking about how you
might get involved.
AGM and summary of accounts 2012
I hope to see a lot of you on my travels to
Branches and Groups around the country, but
most immediately at the AGM on 21 September.
A summary of the accounts for 2012 is on pages
5-6 and will be presented at the AGM, but if you
would like a full copy of the accounts, please
contact Central Office.
Membership surveys
In order to make sure our services are tailored
as closely as possible to your needs, we enclose
two surveys in this Bulletin. The first is to find
out what you would most like from a Forum
and workshops around the country next year
to mark our 75th Anniversary. We have also
used the opportunity to ask for your views on
what kinds of Fellowship-branded products
you may consider buying – see pages 9-10.
The second survey is research into what other
health conditions you may be living with to see
if there are correlations between having had
Polio and the incidence of certain health issues.
This research will enable us to provide more
information to GPs and other health professionals
so that they in turn can improve the services they
provide for you – see pages 29-32.
Winter Warmth Appeal
Also enclosed in this issue is a letter from
our Ambassador Professor Gareth Williams
appealing for money for our annual Winter
Warmth Appeal. Funds raised will enable us to
provide grants for members living with Polio
and PPS to help them pay to keep warm this
winter. Extra sensitivity to the cold is a symptom
of PPS, but many of our members on low
incomes are ineligible to receive any help from
the Government, and the worry about how to
pay heating bills only adds to their stress. If you
can spare any money at all, please support this
very important appeal. n
Statement of Financial Activities
(incorporating an Income & Expenditure Account)
Note
Unrestricted
Funds
£
Restricted
Funds
£
Endowment
Funds
£
Total
Funds
2012 £
Total
Funds
2011 £
Incoming Resources
Voluntary Income
5
Activities for generating
5
funds
Investment Income
Total Incoming Resources
950,203
390,243
13,000
-
950,203
403,243
422,575
365,182
106,193
1,446,639
6,544
19,544
-
112,737
1,466,183
86,475
874,232
Resources Expended
Costs of Generating Funds 6
Charitable Activities
7
Governance Costs
8
Total Resources Expended
131,746
725,832
48,849
906,427
67,568
67,568
-
131,746
793,400
48,849
973,995
154,602
755,238
51,343
961,183
540,212
(48,024)
-
492,188
(86,951)
(147,000)
147,000
-
-
Net Incoming/(Outgoing)
Resources
Gross transfers between
funds
for the year ended 31 December 2012
Other Recognised Losses
10
(15,000)
-
-
(15,000)
-
11
11
102,731
51,904
-
-
102,731
51,904
35,461
2,665
Net Movement in Funds
679,847
-195,024
147,000
631,823
(48,825)
Fund balances brought
forward at 1.01.12
2,776,640
649,630
-
3,426,270
3,475,095
Fund balances carried
forward at 31.12.12
3,456,487
454,606
147,000
4,058,093
3,426,270
Losses on revaluations of
fixed assets for charity’s
own use
(Losses)/Gains on
investment assets
Unrealised (losses)/gains
Realised (losses)/gains
5
Balance Sheet
as at 31 December 2012
Notes
At 31 December 2012
£
Fixed Assets
Tangible assets
Investments
10
11
At 31 December 2011
£
321,582
2,767,505
£
355,969
2,643,215
3,089,087
Current Assets
Debtors
Short term deposits
Cash at bank and in hand
Creditors: Amounts falling
due within one year
Net Current Assets
Net Assets
Funds
Unrestricted
Restricted
Endowment
Total Funds
£
2,999,184
12
13
665,280
46,765
350,929
1,062,974
259,642
48,851
214,988
523,481
14
93,968
96,395
15
969,006
4,058,093
427,086
3,426,270
17
18
19
15
3,456,487
454,606
147,000
4,058,093
2,776,640
649,630
3,426,270
Approved by the Board and authorised for issue on 27 July 2013.
L Evers
Vice Chairman
We want to hear your news. Please tell us what events you have
organised, or trips you have been on.
Copy dates for The Bulletin are:
November/December issue – 10 October
January/February issue – 10 December
Please note The Bulletin is published in the middle of the month.
Send your reports to the address on page 63.
6
T
his year’s Winter Warmth Appeal is off
to a hot start thanks to support from
The British Polio Fellowship’s new
Ambassadors Julia Roberts and Professor
Gareth Williams, who have joined forces to help
ensure the £20,000 fundraising target is met.
Many Fellowship members feel the cold more
than most and so need to keep the heating
turned up higher than the average household.
This, coupled with the seemingly endless rising
cost of heating bills, can cause many of our
members a great deal of worry and stress in
what is supposed to be the most wonderful
time of the year.
Julia Roberts has kindly agreed to
lend her support to the launch of
our campaign in the media, while
the Winter Warmth Appeal caught
the eye of Professor Williams, who
volunteered to write this year’s
letter appealing for the support
of members, and is also planning
a local event of his own to raise money and
awareness of the issue.
“I have been greatly impressed by the breadth
and variety of the practical help and general
support that The British Fellowship provides,”
said Gareth. “No-one should have to spend the
winter months in fear of putting the heating on.
This is such a worthwhile cause that I wanted to
be involved and hope members and supporters
will join me in making this year’s campaign the
best ever.”
Members who face the most hardship are
those already on low incomes; people under
60 years of age not qualifying for the winter
fuel allowance just compounds the problem.
The Fellowship receives no government
funding for its work and is totally reliant on the
generosity of members and supporters and the
public, which makes the support of people like
Gareth and Julia so vital in raising the profile of
this and other essential campaigns.
“It’s great to be joining Gareth in supporting
the Winter Warmth Appeal,” said Julia Roberts.
“Gareth and I met at the Team Splash event in
July and it is a pleasure to be working with him
again to highlight this Appeal, which is less about
helping people with their bills and more about
ensuring those with Polio do not have to spend
the winter months living in fear of switching on
the heating.”
Ambassadors
Winter Warmth Appeal
The Appeal is about more than just
money. In addition to delivering
financial support through heating
grants for members who qualify,
the campaign aims to provide
further practical advice on how
to keep utility bills down, provide
factsheets on cold intolerance and
much more.
Look out for further information in future
editions of The Bulletin and in the press.
This Appeal always highlights the generosity of
our members and all contributions are greatly
appreciated. Enclosed with this issue you will
find a letter from Gareth Williams, and two
donation forms. If you wish to make a single
donation, you can fill in the form enclosed with
this issue and send it with a cheque to Central
Office. If you prefer, you can make a regular
donation via direct debit, just complete and
send the direct debit form to Central Office and
we will do the rest. Or, of course, you can make
a donation by credit card by calling 0800 018
0586. Thank you. n
7
Jazz event to spread
the warmth
A
s part of his role in spearheading this
year’s Winter Warmth Appeal with
Fellowship members, Professor Gareth
Williams is arranging an open air jazz event in
the Bristol region to help raise much-needed
awareness of the issue, plus funds to help the
campaign reach its £20,000 target.
As The Bulletin went to press, the event was still
in the early stages of planning, but is expected
to take place in late November/early December
in the Thornbury area of Bristol.
“As fuel bills continue to rise, the amount The
Fellowship needs to raise each year grows
correspondingly,” said Professor Williams.
“We don’t have a firm date or venue yet but St
Mary’s Precinct in Thornbury in late November or
early December is a distinct possibility – we will
keep members posted, but keep an eye on the
local press.”
If anyone would be interested in going along
to support Professor Williams’ event in Bristol or
in organising a fundraiser of their own, please
contact Central Office for further details.
British Polio Fellowship
Annual General Meeting
T
he Annual General Meeting of The British Polio Fellowship will be held as follows:
Date: 21 September 2013
Venue: The Hilton Strathclyde Hotel, Phoenix Crescent, Strathclyde Business Park, Bellshill, North Lanarkshire ML4 3JQ. Tel. 01698 395500.
Programme:
10.00am – 10.45am
Registration
11.00am – 12.00pm
AGM including Q&As
12.00pm – 12.15pm
Announcement of Barbara Wood Citizenship Award
12.30pm – 1.30pm
Buffet lunch
1.45pm – 2.30pm
North Lanarkshire Council Welfare Rights, Social Inclusion Team
2.30pm – 3.15pm Professor Gareth Williams presenting extracts from his latest book
Paralysed with fear – the story of Polio
3.15pm – 3.45pm
Coffee break
3.45pm – 4.15pm
Annual raffle
4.15pmFinish
We look forward to seeing you there! n
8
$
Please help us
to meet your needs
Any other topic ___________________________
________________________________________
To get it right, however, we would like to have
the input from you, our members, so we can
tailor the events to your needs. We would
appreciate a maximum of 10 minutes of your
time to go through the suggested options
and tell us what you would like to see. If your
preferences are not mentioned, do let us know.
o Can I be referred to a different hospital if I
think that their orthotic clinic is better?
Please tick your choices below or add any
other suggestion you may wish to share.
Thank you so much for your invaluable
contribution and feedback.
Keynote speech(es)/presentation(s)
Please tick the box (√) of the subject that you
would like to hear a keynote speech about and
tell us your ideas if not already shown:
Post Polio Syndrome (PPS)
Please tell us what aspect of PPS you would like
to hear about ____________________________
________________________________________
________________________________________
Occupational therapist on:
o The role of an occupational therapist (OT)
o How can an OT help me to continue to live
independently?
Orthotist on:
o What should I expect at my appointment?
o How long will my appointment be and if my
case is complex would I be able to have a
longer appointment?
o What happens if I am not satisfied with my
orthosis/shoes – how do I complain?
Neuro physiotherapist on:
o The role of a physiotherapist in the
management of late effects of Polio/PPS
o What is the difference between a
physiotherapist and a neuro physiotherapist?
o How do I get a referral to the right
physiotherapist?
o What should I expect?
o How many appointments would I have at an
NHS hospital?
Other
Please tell us about any other subject(s) you
wish to hear about ________________________
________________________________________
Workshops
Please tick the box (√) of the subject that you
would like to attend a workshop on and also tell
us your ideas if not already shown:
Disability Benefits
o Latest changes in legislation
o What does it all mean?
o How can I be referred to an OT?
oCriteria/eligibility
o How long would I have to wait for the
appointment?
o How to get help
members’ survey
I
n 2014, it will be The Fellowship’s 75th
Anniversary and we wish to celebrate this
milestone with our members. It has been five
years since we last toured the country with
our Super Forums and we feel it’s time to give
our members the opportunity to benefit once
again from talks and workshops that are highly
relevant to them. It will also be a great time
to socialise and meet up with distant fellow
members to celebrate the occasion.
o Role of Support Services Benefits Advisor
9
news
members’
from central
survey
office
$
How to improve your wellbeing
o Bottle opener and torch keyring
o Diet and nutritional advice
o Umbrella (75 cm)
o Benefits of physical exercise
o Pill box
o Forms of suitable exercise
o Magnifier bookmark
o Complementary therapy
o A6 notepad fridge magnet
Carers
oNotepad
o Issues around caring
o Muffin toppers for baking decoration
o Money allowance / Entitlements
o Pin badges
oMe-time
o Flashing badges
Other
o Car stickers
Please tell us about any other workshop(s) you
would be interested in _____________________
________________________________________
oPedometer
Exhibitors
Please tell us what kind of exhibitors (e.g.
mobility aids) and/or leisure providers (e.g.
Sailability) you would like to see at the Forum.
Please tick the box (√) of the stand(s) that you
would like to see at the Forum and also tell us
your ideas if not already shown:
o Support Services information and literature
o How to become involved in the media
o How to contribute your personal case study
o How to send articles to the local and/or
regional media
o How to help celebrate British Polio Month
and Post Polio Syndrome (PPS) Day
o How to become a volunteer / fundraiser
Other
Please tell us about any other stands you would
like to see at the Forum ____________________
________________________________________
________________________________________
________________________________________
Anniversary merchandise
Please tick the box (√) of the merchandise you
would like to buy or would find of value when
holding your own anniversary fundraising event
o Pen with grip
o Fruit of the Loom polo shirt
10
oCufflinks
o Silk tie
oHankie
o Silk scarf
o Small reusable shopping bags (In a pouch)
oCalendar
o Indoor Games calendar
History Corner
Please tell us whether you would like to see the
History Corner again
oYes
oNo
Other entertainment
o Private screening of topical 2014 documentary
on living with Polio and Post Polio Syndrome
(PPS) in the UK today
o Book readings conducted by our Ambassadors
who have published books on Polio
o Hand / foot / leg massage
o Climbing wall
Other
Please tell us of any other demonstrations or
entertainment you would enjoy _____________
________________________________________
________________________________________
When completed, please send this form to: The
British Polio Fellowship, Freepost RLSJ-BAGSBUCT, British Polio Fellowship, Eagle Point, The
Runway, South Ruislip, Middlesex HA4 6BR. n
British Polio Month
a huge success
Team Splash Swimming Gala
The month started with a big splash on 7 July
as stars and celebrities from the world of TV,
sport and the arts gathered at Trinity school in
Croydon for the ‘Team Splash’ swimming event.
QVC presenter and author Julia Roberts was
joined for 15 fantastic races by ex-Crystal Palace
and England footballers Geoff Thomas and John
Salako and Team GB Paralympian heroes past
and present. Veteran Paralympian Silver Medallist
swimmer from the 1968 Games in Tel Aviv John
Watts was present to meet and cheer on the
Paralympian Silver Medallist from the 2012
+
british polio month
F
or those who may have been in another
country during July and August, The
Bulletin is delighted to report that this
year’s British Polio Month was a huge success,
with British Polio Fellowship members rubbing
shoulders with celebrities, authors, sports stars
and Paralympian legends to raise money for our
charity. Equally importantly, the messages about
Polio and Post Polio Syndrome (PPS) have been
carried far and wide; the success of which has led
to many new opportunities and ideas for
The Fellowship and our members, which we
will be looking to capitalise on during our allimportant 75th year, 2014.
11
+
Games, James Crisp, as he took on Julia for the
grand finale.
Also present were The British Polio Fellowship’s
latest Ambassadors, the author Gareth Williams
and film-maker and author Tony Klinger. The
whole event was enhanced on the day thanks
to ‘The Voice of Swimming’ himself, Bob Ballard,
who kindly agreed to come along and host
the event.
british polio month
Several fun events included everything from a
‘rubber ring race’ and ‘pyjama relay’ that had
everyone in stitches to ‘lilo races’ – and the
ever-popular obstacle course! The British Polio
Fellowship team comprising staff and volunteers
were the overall winners, which was the icing on
the cake for a perfect day.
A day of three Paralympians, the Swimming Gala
was the scene for the first meeting of fellow
swimming Silver Medalists James Crisp and John
Watts plus Paralympian and torch bearer Anne
Wafula Strike; all whom know what it is like to
face a life with Polio. It was also a day of three
Ambassador authors, as Julia Roberts met Gareth
Williams and Tony Klinger, who likewise all share
a connection with the charity. The event was
also the first time our new billboard advert was
displayed to the world. Featuring the faces of
scores of our members who were photographed
for the purpose at the National Indoor Games
in Leicester back in February, the artwork made
a big impact by being displayed on a 48 sheet
advan, which was to turn up at The Palace later in
the month.
Medical Alert Card
With the campaign off to such a flying start,
the next thing on the agenda was to make
some waves in the media and use the month to
engage with GPs, the medical profession and the
12
general public, not only as an information
exercise to explain why Polio and PPS are still
relevant, but to outline the practical steps being
taken to improve the lives of those living with
Polio, PPS and the late effects of Polio.
Top of the agenda was the launch of the
Medical Alert Card. Designed to ensure medical
professionals are aware that a patient carrying
the card is experiencing the late effects of
Polio. The production and distribution of the
card was followed up by letters to editors
that saw our news published in newspapers
throughout the country. Letters were also sent
out to engage with GPs directly and to remind
them of the Maps of Medicine, our services
and other online resources available to them
when looking to offer Polio patients the best
possible treatment or when looking to arrive at a
successful diagnosis of PPS.
Our news has been well received by medics,
while our increased media presence has led
to many new people coming forward to
engage with The Fellowship; from non-members
wishing to tell us their previously unheard
stories of Polio, to new friends and ambassadors
offering us their support – all essential if our
Proposed Post Polio
Syndrome (PPS) Day
plans for our 75th anniversary next year are to be
equally successful.
Final celebration
The month’s activities culminated on 10 August
at Crystal Palace FC’s Selhurst Park, where Chief
Executive Ted Hill was joined once more by
Julia Roberts and our giant billboard featuring
members’ photos, to celebrate a successful
month of awareness-raising and draw the
curtain on this year’s British Polio Month.
“I also have to give a giant vote of thanks to our
staff for going the extra mile as usual and not least
our members; from those who had their photos
taken to make the British Polio Month advan
artwork possible, to everyone who came along
to support the events. It all bodes really well for a
fantastic 2014 for everyone connected with The
British Polio Fellowship.”
Other exciting developments on the horizon
include Tony Klinger making his skills as a filmmaker available to The Fellowship to produce
three documentaries on Polio for our 75th
Anniversary. You can read more about both of
these developments in the following pages.
Looking forward to next year
The National Indoor Games in March,
British Polio Month, PPS Day, a trio of film
documentaries and other events planned for
our 75th anniversary celebrations are going to
make 2014 one of the biggest years ever in the
history of The British Polio Fellowship – if not the
biggest. We very much look forward to members
taking an active role as always, getting involved
and being there at the events. Additional plans
for our roadshow are in the early stages. You can
be the first to read about event plans and news
concerning our 75th Anniversary, by visiting the
website www.britishpolio.org.uk.
If you aren’t an internet user don’t worry, sit back
and relax; we will update you fully in the next
edition of The Bulletin. n
british polio month
“This year’s events have been better than anyone
could have dared to hope, so a big thank you to
everyone who has worked to make this year’s
British Polio Month one to remember,” said Ted.
“That we have so many people to thank is a
testament to how the event has evolved. If you
had told me at the start of the year we would
be benefiting from the support of stars like Julia
Roberts, Bob Ballard, Geoff Thomas, John Salako,
plus Paralympians James Crisp and Anne Wafula
Strike, not to mention author Gareth Williams and
the film-maker and author Tony Klinger, I would not
have believed you.
A wider audience for the
work of The British Polio
Fellowship has also resulted
in us being contacted
by a host of people and
organisations looking to
work with us or join forces for future events. One
of these is a potential tie-up with Winchester
Rotary, which in turn has led to an idea for a PPS
Day on October 26. We are finalising the details
as we go to press, and if successful, this could
herald the start of an annual PPS Day with a
high-profile event planned for 2014.
13
British Polio Month
british polio month
officially closed
14
B
ritish Polio Month (July-August 2013) was
officially closed on Saturday 10 August at
Crystal Palace FC’s ground, Selhurst Park,
by QVC presenter and celebrity Julia Roberts. An
Ambassador for The British Polio Fellowship, Julia
was joined by Ted Hill MBE, CEO of the charity, to
celebrate a successful month of awareness-raising.
those with Polio and Post Polio Syndrome (PPS)
in the UK. This year’s British Polio Month has also
seen the charity launch its Medical Alert Card
designed to ensure medical professionals are
aware that a patient carrying the card is living
with the late effects of Polio or PPS.
“This year’s British Polio Month has been a huge
success and as we officially bring it to a close
I would like to thank everyone who has been
involved,” said Ted. “There’s no time to rest though,
we are already organising and looking forward
to a packed calendar of events next year as we
celebrate The British Polio Fellowship’s 75th
Anniversary.”
“I am one of over 120,000 people who are still
living with Polio and PPS in the UK and it’s
important that people are aware they remain big
issues in the UK. That is why I wanted to support
British Polio Month as much as possible,” said Julia
Roberts. “The events have not only helped raise
valuable funds for The British Polio Fellowship,
they’ve helped raise awareness – and they’ve been
good fun too.”
Starting on Sunday 7 July, stars and celebrities
gathered at Trinity School, Croydon, for the
‘Team Splash’ swimming event, raising funds for
The British Polio Fellowship and officially kicking
off a month of activities raising awareness of
For more details on the medical alert card
and PPS, The British Polio Fellowship can be
contacted free on 0800 018 0506 by email
at info@britishpolio.org.uk or visit www.
britishpolio.org.uk n
Members’ fundraising
for British Polio Month
Members Suzanne Daish and Jean Martin held
a barbecue in support of British Polio Month
and raised a brilliant £600. Our thanks to the
members of The Old Verulamians Masonic
Lodge (of which Suzanne’s husband is the
current Master) for its support of this event.
Jean’s garden was used to hold the barbecue
and they supplied party food, beer, wine, tea,
cakes and soft drinks. They were blessed with
wonderful weather and a good time was had by
all who attended.
Also supporting The Fellowship was Suzanne’s
daughter Amanda who raised a brilliant £250 by
running the London 10K.
Morrison’s Collection
Many thanks to Eileen Skilton, her daughter
and granddaughter for supporting British Polio
Month by holding a collection at a Morrison’s
store in Newtown. They raised a brilliant £125.
Unfortunately, Eileen’s husband Derek (who is a
member of The Fellowship) was unable to help
as he was in hospital. Well done ladies and get
well soon Derek.
british polio month
The Old Verulamians Lodge raise
£600
In memory of a dear sister
Many thanks to Evelyn Snell who supported
Polio Month by sending in a £100 donation in
memory of her dear sister Diana who passed
away in 2012.
15
Putting Polio in the picture
Can you help?
R
Ambassador, author and filmmaker Tony Klinger has kindly
agreed to make three films to commemorate the
75th Anniversary of The British Polio Fellowship,
but he is going to need your help and you could
end up being the star of the show!
The films will help to communicate what it is like
to live with Polio and Post Polio Syndrome (PPS)
in the UK and we hope they will form a lasting
legacy, as well as offering support and hope to
people living with PPS now. The films will be
powerful, honest and emotionally intelligent
without being mawkish. Tony’s background
in the production of feature films over two
decades make him the perfect man to take on
the challenge.
The films will be directed at several audiences:
those with a personal connection to Polio;
members of The Fellowship; the medical
profession; and the general public. To deliver
real authenticity, Tony needs to hear urgently
from members, particularly your life histories of
dealing with Polio and PPS.
“I am proud to be making these films for The British
Polio Fellowship,” said Tony.“We are already working
16
hard on pre-production, with
my researchers looking into
possible locations, but there
is only so much we can do.
What we need is the help of
members, which is what I am
appealing for.”
eaders will have
noticed that our 75th
Anniversary in 2014
is very much on our minds
right now and while it may
seem early to be thinking
about next year, things
do take time to plan and
with many of our projects,
we need the engagement
and support of you, our
members, to make them
a success.
•
•
•
•
•
•
•
•
Tony needs films,
photographs, mementos
–in fact any material that
would help build a powerful
presentation and give Tony
and his film crew the best
material possible to work
with. This could include:
Films, videos, photographs, old newsreels
Press cuttings and articles
Poems or short stories
Fundraising events
Sporting programmes
Posters, flyers and publicity surrounding
other events – past and present
Your written accounts – diaries, memoirs or
other written texts
Anything else you think might help someone
gain an insight into the history of Polio and
PPS in the UK.
Don’t forget to say if you are happy to be caught
on camera yourself!
Don’t worry if your material refers to a loved
one, or about the format or quality. Tony has
years of experience in the industry and has
many ways of handling and using old footage
and information.
Tony’s team will take a look at everything sent
to them and will contact you to follow up if they
plan to use your material. Although far from
just looking for memorabilia, Tony is also on the
hunt for people who might have an inspirational
story to tell directly to the cameras.
Production has begun in earnest so if you think
you can help – or you know someone who can,
please get in touch. Queries can be directed to
Heike at Central Office, address on page 63.
We are well aware we could be handling
people’s treasured possessions and memories,
so rest assured these will be treated with
respect, but should they appear on film, they
will live forever. If you are sending originals,
every effort will be made to keep your items
safe (without them we have no story!) and
return them to you in the condition in which we
received them. However, we cannot accept any
liability for loss or damage occurring as a result
of the post or otherwise. If you have any worries
in this regard, please do contact us and we will
do our best to address your concerns. n
Who do you
75th
know?
Anniversary
Golf Day W
A
s part of our 75th Anniversary
celebrations in 2014, Hertfordshire
member Colin Powell along with
the Fundraising Team is finalising plans for
an exciting golf day, that could hopefully
become an annual day in the diary, subject
to the success of
the inaugural event.
Colin kindly saw
the opportunity to
partner up one of his
corporate contacts
with The Fellowship,
which may potentially give us a sponsor/
underwriter for the golf day. While we have
to respect the company’s anonymity for now
(as the final details are yet to be confirmed), it
may be that you have some equally creative
ideas about getting others involved in the
Fellowship’s fundraising activities as part of
our 75th Anniversary? Let us know!
“You don’t need to be a film star to take part
– we just need you to be willing to tell your
personal story in a frank and engaging fashion,”
added Tony. “While we are making informative
documentaries, they have to entertain or no-one
will want to watch them, so real-life stories are
going to be the lifeblood of what we do.”
Taking utmost care
e often find out about a member’s
connections and contacts when
it’s too late. However, our 75th
Anniversary presents the perfect opportunity
to let us know what companies, celebrities,
sportspeople and other well-known people
you know. Maybe if they are your good friends
or contacts, they might consider becoming
Ambassadors for The British Polio Fellowship
during 2014, or perhaps they would be prepared
to turn up and act as Master of Ceremonies or
guest of honour at a fundraising event for the
charity? In such a celebrity-driven culture, it is
important that we capitalise on any contacts
we have, so that the charity can continue to
get its message out in a competitive charity
marketplace. While we still very much value case
studies and people’s real-life experiences as part
of our media and communications activity, a
little ‘celebrity juice’ goes a long way as well, as
has been seen through recent media successes
we have had with our growing band of
Ambassadors. If you think you can help, please
contact Glenys at Central Office.
17
Proposed
Post Polio Syndrome (PPS) Day
M
embers will doubtless be aware that
World Polio Day falls this year on
Thursday 24 October, but thanks to
the success of this year’s British Polio Month,
The British Polio Fellowship has been working
with the Winchester Rotary Club to secure a
Post Polio Syndrome (PPS) Day on 26 October
to highlight the plight of those living with
the condition.
Discussions are ongoing,
but as The Bulletin went to
press, plans have been put
forward to launch PPS Day in
Winchester, taking advantage
of our advan that proved such
a showstopper during British
Polio Month. The Winchester
Rotary Club is keen to support
us, with a launch event
planned at the Winchester
Guildhall.
Our 75th Anniversary next year will provide the
impetus to run such an event at a national level
in 2014.
Polio and PPS are still
very much
with us and a
campaign to
highlight this in
the UK with an
awareness day of its
own would make a
great deal of sense.
Over 120,000 people are still
living with PPS in the UK. Polio
and PPS remain big issues in
the UK and, as the Team Splash event at the start
of British Polio Month demonstrated, it is far
from being just ‘an elderly person’s condition’
or ‘yesterday’s problem’. Polio and PPS are still
very much with us and a campaign to highlight
this in the UK with an awareness day of its own
would make a great deal of sense.
“With our 75th Anniversary planning well under
way for 2014, a PPS Day would be a great
addition and a PPS Day this year is seen as a
perfect test run for how this might play next year
as a nationwide event,” said Ted Hill. “The event in
Winchester looks like the perfect platform and we
are looking forward to attending on the day and
lending our support.”
18
The timing of the event in Winchester, coming in
the wake of World Polio Day, couldn’t be better.
Hopes are high that having a regular annual PPS
Day to follow World Polio Day, with activities
around the country to mark the event, could be
something big.
The Winchester event will have
some fundraising activities
for World Polio, but the
Winchester Rotary Club’s
keenness to raise awareness
of PPS made it a natural event
for The Fellowship to get
involved with.
Discussions are also ongoing
with a view to creating a
Polio/PPS commemorative
garden and ideas surrounding
this proposal are at the
consultation stage, with thyme
– among other herbs and
flowers – being suggested as a floral emblem
that could be adopted for PPS.
“It is great to be working with Winchester Rotary
on such an exciting project and in addition to
a PPS Day, there are several other plans in the
pipeline,” added Ted. “Fellowship members in
Winchester and the wider region will be very
welcome to come along and should watch out for
details in the local press as the date approaches.”
Ted Hill and Central Office staff will be
attending on behalf of The British Polio
Fellowship to support the event. Watch this
space for a post-event summary, news, views
and pictures from PPS Day! n
Sponsored
London 10k
Well done to all
our runners who
participated in
the London 10K.
Sponsorship is
still coming in for
this event.
Mount
Kilimanjaro
By the time you
are reading this
Bulletin, Maggie Hill will be facing the arduous
task of climbing Mount Kilimanjaro Maggie has
so far raised £145 for The Fellowship and if you
would like to support her, go to Maggie’s page on
the Justgiving website. Good luck Maggie!
Great North Run
Iron Woman Vicki completes event
Very well done to Vicki Thrift, who
completed the gruelling Wimbleball
Half Iron Man event in 7 hours 40
minutes. Vicki wanted to raise money
for The Fellowship as a ‘thank you’ for
the support given to her mum. This is
Vicki’s account of the day:
“I did it!!! Heart racing and every muscle
aching as I crossed the finish line. The
gruelling 70.3 mile Wimbleball Half Iron
Man is said to be the toughest in the UK.
The event consisted of a 1.2 mile swim
in a cold lake and a muddy 56-mile bike
ride, finishing with a 13.1-mile run in the
rain! Training started late last year and
consisted of five to six nights’ a week
of hard work. Training for hours during the cold,
dark nights of a British winter was extremely hardgoing and not for the faint hearted! Things got
really tough when I incurred a dislocated shoulder
in March, but the show had to go on and I didn’t let
it deter me from giving my training regime 110%. I
have been referred to by a close friend as being an
‘extremely determined and strong woman’, just like
my mum I would say. I am elated to say that out of
1700 competitors, I rolled in at 1045.
“It was an amazing experience and an unforgettable
day. Every ache was worth it and I raised a total
of £610. I would like to thank my partner, family
and friends whose support and patience has been
incredible during the intense and time-consuming
training. I would also like to say a big thank you to
Paul for the intricate training programme he devised
for me. His help has been limitless and I really
appreciate it. I could never have done it without
you all. A big thank you to my very special Mum for
being there to watch my achievement. I am so proud
to have done this for you.“
Many thanks Vicki – your support is greatly
appreciated.
fundraising news
Good luck also to member Stephen Gunn who
will be running the Great North Run on 16
September in support of The Fellowship.
events
19
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bidder on th
Silent auction
Your chance to bid for a shirt
worn and signed by Chelsea
defender
David Luiz
fundraising news
Y
ou haven’t missed your chance of
owning a prestigious Chelsea shirt
as we are, once again, giving you
the opportunity to bid for the Chelsea
shirt which has been worn and signed by
David Luiz. Member Joe Fisher was given
this shirt by his son Daniel who is the
Creative Director and Partner at
Chi and Partners, London. To add
provenance to the shirt, Daniel has
very kindly added the following:
“This shirt was worn and signed
by David Luiz for the Samsung/
Chelsea ‘Pinball’ commercial
shoot at Shepperton Studios on
22/11/2012, over which I presided.”
Daniel Fisher
Details of the auction will be placed on our
website, Twitter and Facebook. If you would
like to bid for this shirt, please fill in the form
on the opposite page and send it to The British
Polio Fellowship, Eagle Point, The Runway, South
Ruislip, Middlesex HA4 8AN. This form can
also be downloaded from our website (www.
britishpolio.org.uk) or you can write out all
your details on a separate sheet of paper.
Closing date for all bids is Monday, 21 October
2013. Any bids received after this date will not
20
be
included. If we
receive two bids of equal value,
preference is given to the bid that
arrives first.
Remember that, if you wish the item to
be mailed to you (which will be by registered
post), the cost of mailing will be added to the
sum you are to pay.
If you are successful with your bid, we will
contact you by telephone or email within 72
hours and the item will be sent upon receipt
of cleared payment. Payment can be made by
cheque or credit card.
Finally – to be sure of being successful a
generous bid is recommended!
Silent auction form
Auction bid _______________ (not less than £30)
Name: ___________________________________________________________
$
Address: ________________________________________________________
__________________________________________________________________
fundraising news
Chelsea football shirt worn and signed
by David Luiz
__________________________________________________________________
Mobile telephone no: ____________________________________________
Telephone no: ___________________________________________________
Email address: __________________________________________________
21
Dance Championships
Brentwood
Royal Albert Hall
The International Dance Championships will
soon be upon us and we are still looking for
volunteers to sell programmes at Brentwood on
1 and 2 October. It would be great if you could
spare a couple of hours to sell programmes and
then you would be able to spend the rest of the
day watching the spectacular dancing.
We are also looking for programme sellers at
the Royal Albert Hall on Thursday 3 October.
You will need to arrive at the Albert Hall for
4.00pm and programme sales finish at around
8.30/9.00pm, after which time you will be able
to watch the finals of the Ballroom and Latin
American dancing.
Please contact Marianne on 0208 836 3679.
Celebrating 80
glorious years
fundraising news
Member Norah Fahy celebrated her 80th
birthday and asked for donations to The
Fellowship in lieu of presents. Norah said:
“Summer arrived just in time to celebrate my 80th
birthday on 30 June with family and old friends I
had not met for years. So we certainly had plenty
to talk about! The Queen’s Hotel in Portsmouth
provided a splendid lunch and after dessert, to
my surprise and delight, brought in a beautifully
decorated birthday cake...no candles, thank
goodness! My thanks to my cousin Geraldine and
her husband who arranged the memorable day.”
Many thanks to Norah for supporting The
Fellowship and raising £130.
Leatherhead Rotarians
lend support
Our thanks to Ken Prentice and the Rotary Club of
Leatherhead for their very kind and generous donation
of £2,750.
Chief Executive Ted Hill was presented with the
cheque at their Rotary meeting in Leatherhead. The
money was raised through holding a Golf Day at
Effingham Golf Club and it was decided to split the
proceeds between The Fellowship and the Downs
Syndrome Association.
Have you got a birthday or anniversary coming up? Why not ask your friends
and family to make a donation to us rather than buying you a gift? Contact
Linda on 0208 836 3689 or email: Linda@britishpolio.org.uk for more details.
22
Congratulations...
1934 saw the beginning of a new way of life
for me. On a Saturday in August, I had been
out gathering brambles with my mother
and sister – my normal energetic self. On
the Sunday, I could not raise my head
from the pillow. A doctor came, diagnosed
influenza but sent a district nurse with an
ice bag to put on my head. By this time, I
was unaware of anything and only know
what I have been told. The family doctor
came, discounted flu and meningitis, and
diagnosed Infantile Paralysis (Poliomyelitis).
Nurses arrived, closely followed by a
physiotherapist.
I was nursed at home as I was too ill to be
moved to the hospital. The weeks passed with
the doctor visiting twice daily. The physio
pummelled my poor body with olive oil – how I
still hate its smell. One day I was lifted out of bed
and supported on all sides, was told to walk, two
steps, back to bed and then further each day.
In 2013, I just felt a need to celebrate my 90th
birthday. So I engaged a caterer, invited 16 friends,
requested a sunny day and stated: no cake,
balloons or presents, but donations, if you wish,
to be divided equally between three charities,
including The Fellowship. It was a glorious day.
I give thanks for so much and to so many.
Lena Crockett
... and celebrations
I had my 90th birthday dinner party at Haggs
Castle Golf Club with 19 friends and relations,
just before going on holiday to Vancouver for
three weeks.
I am a member of Post Polio Awareness and
Support Society of British Columbia. I first
went there in March 2000 to attend its
symposium in Vancouver and have returned
every year since.
The Society recently wrote a piece about
my 15-day Hawaiian cruise in its newsletter.
I was pleased to visit Pearl Harbour, which was
very moving.
I contracted Infantile Paralysis in both legs
when I was 15 months old. My mother was
a midwife and looked after me well. I was in
plaster of Paris for two months to weaken all
the muscles. I was always able to do anything I
wanted – I played tennis and golf up until the
age of 70 and rode a bike until I was 75, so I
have been very lucky. I still drive a car.
fundraising news
In due time, I qualified as a teacher and
spent most of my teaching life working with
hospitalised children – with all its headaches,
heartaches and rewards. I retired as Head of a
Hospital School and Home Tuition Service.
Then, in 2005, my weakened left leg caused me
to fall, fracturing the femur just above the knee
joint. Now, I totter about indoors with the aid of
a four-wheeled walking frame with the result
that my right shoulder, taking the strain, has
developed osteoarthritis – very painful.
Florence Ritchie
23
Reach for the Don’t forget
sky
That is what Alicia Doolan and four of her
friends will be doing on 18 September when
they do a skydive. Alicia’s father is member
Christopher Doolan and Alicia’s best friend
will also be doing the skydive in memory of
her father Roger Stubbs, who was a member
of The Fellowship but sadly passed away in
May this year.
Christopher will be celebrating his 70th
birthday in September and he has asked his
relatives and friends to make a donation to
The Fellowship in lieu of presents.
Good
luck girls and have a wonderful
180x135mm_ViperTrike-LifestyleChair_Ad_AW.pdf
birthday Chris.
1
Don’t forget to order your Christmas Cards !
You will have received your Christmas Card Order
Form in your July Bulletin and I know that many
of you have ordered and received your cards
already. However, it’s not too late to order them
now. Simply use your order form or tear out the
one in this edition of The Bulletin and send it with
your payment to Central Office. If you would
like to pay by debit/credit card, simply call 0800
0180586 to place your order.
18/02/2013
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fundraising news
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fundraising news
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26
In memory
We would like to offer our sincere condolences to the families and friends of the following people:
Mrs Janet Louise Bee
Member
Worcestershire
Mr David Campbell
Member
Dunfermline
Mrs Joan Charlston
Member
Hertfordshire
Mr Peter W N Charlton
Member
Hampshire
Mr James B M Davies
Non-member
Wirral
Mrs Marion Downes Member
Cardiff and Vale Branch
Mrs Phyllis Heaney
Member
Hampshire
Mr Sidney Norris
Member
Hampshire
Mr John Popham
Member
Wiltshire
Mrs Joan Powell
Member
Devon (widow of Donald Powell, Secretary to BPF for over 20 years until 1982)
Miss Patricia Radley
Member
Kent
Mr Arthur Robert Tumber
Member
Maidstone
Miss Evelyn Mary Warner
Member
Sutton, Surrey
If you would like to make a donation in memory of a loved one, please contact Linda on 0208 836
Donations from trusts and foundations
The following trusts and foundations have very
generously supported the work of our charity
recently by sending in a grant:
Miss A B Pollen Trust
Charities Trust
Huggard Charitable Trust
Macdonald-Buchanan Charitable Settlement
Majorie Coote Old People’s Charity Fund
Michael and Anna Wix Charitable Trust
Robert Orpwood Blott Charitable Trust
The Christopher Laing Foundation
fundraising news
3689 or email linda@britishpolio.org.uk
The Fredmill Trust
Write to us at:
The British Polio Fellowship, Eagle Point, The Runway, South Ruislip, Middlesex
HA4 6SE.
Email: info@britishpolio.org.uk
27
Support Services
The Support Services team provides information, advice and support
to people living with Polio and Post Polio Syndrome (PPS), co-ordinates
the welfare grants schemes for members and supports the welfare
volunteer network.
Contact us on: 0800 018 0586 FREEPHONE
support services
Email: infobenefits@britishpolio.org.uk
Motability payments
during hospital stays
The Department for Work and Pensions (DWP)
does not make payments of DLA care and
mobility components after a disabled person
has been in hospital for 28 days or more.
Payments resume once the disabled person
comes out of hospital.
or somebody acting on their behalf – should
contact Motability to discuss their individual
circumstances. Motability will propose
appropriate arrangements depending on the
preferences of the customer and the expected
length of their hospital stay.
In the past, this suspension
of payments did not apply
to Motability customers,
whose mobility component
continued to be paid to the
Scheme until the end of their
Motability agreement.
Motability comments:
“Depending on the expected
length of their hospital stay
and, of course, their own
preferences, we will discuss
appropriate arrangements
with individual Motability
customers in this situation
to avoid, wherever possible,
taking back cars and
replacing them later when the
disabled person comes out of hospital.
However, from April 2013
onwards, the DWP has
treated all hospital inpatients
in the same way, whether
they have a Motability vehicle or not. This
means that, for disabled people with Motability
agreements, the DWP will stop paying the DLA
mobility component to the Motability Scheme if
they are in hospital for more than 28 days.
As soon as Motability customers are admitted
to hospital, they should notify the DWP. For
hospital stays of more than 28 days, they –
28
“Since this change was made by the DWP in April
2013, we have been contacted by a number of
customers in this situation and have been able to
leave cars with them in the expectation that they
will come out of hospital and have their allowance
reinstated by the DWP within a reasonable period.”
(Source: Motability)
$
Please let us know
how you are
We are aware that many Fellowship members have a number of other conditions as well as Post
Polio Syndrome (PPS) or continuing effects of Polio. Some of these – such as osteoarthritis due to
additional wear and tear on limbs and joints – are well recognised, others are less obvious and may
just reflect the same experiences as people of a similar age who have not had Polio.
Can you help us by letting us know what other conditions you have? We can use this information to
see if there are any possible links between Polio/PPS and other conditions. For example, if a higher
proportion of people who have had Polio have a condition than people of the same age group who
have not had Polio this may suggest a possible link for further research. It will also help us to link up
with other organisations supporting these conditions, which will we hope will benefit you.
About you
Gender:
o Male
o Female Age:_______________________
Do you smoke?
o No, never o No, have given up o Yes
Your weight
o Underweight
o About right for my height o Overweight
About your conditions
Please tick all that apply and give further details if necessary.
health survey
First part of your postcode (eg HA4): ______________
Neurological conditions
Polio o confirmed o suspected
Post Polio Syndrome o confirmed o suspected
o Epilepsy
o Essential Tremor
o Migraine / Cluster Headache
o Motor Neurone Disease
o Multiple Sclerosis
o Neuropathy
o Parkinson’s Disease
o Stroke
Other_______________________________________________________________________
Musculoskeletal and orthopaedic conditions
o Arthritis – Osteo (wear and tear)
o Arthritis – Rheumatoid
o Bursitis
o Fibromyalgia
o Gout / Pseudo gout
o Hernia
o Muscle Atrophy
o Myasthenia Gravis
29
$
o Osteopenia / Osteoporosis
o Tendinitis
o Pain – Leg o Foot o Ankle o Knee
o Hip
o Pain – Arm o Hand o Wrist
o Elbow o Shoulder
o Pain – Back
o Pain – Neck
Other_______________________________________________________________________
health survey
Circulatory and blood conditions
o Iron Deficiency o Pernicious (Vitamin B12 Deficiency)
o Anaemia – o Anaemia – Sickle Cell / Thalassemia
o Aneurysm
o Angina
o Atherosclerosis / Arteriosclerosis
o Blood Pressure – High (Hypertension)
o Low (Hypotension)
o Cellulitis
o Cholesterol - High
o Deep Vein Thrombosis (DVT) o Embolism
o Heart Arrhythmias
o Heart Attack
o Heart – Other_______________________________________________________________
o Lymphoedema
o Raynaud’s Disease
o Thrombocytopenia
o Varicose Veins
Other_______________________________________________________________________
Endocrine and digestive conditions
o Coeliac Disease
o Constipation (chronic)
o Diabetes – Type 1 (insulin)
o Diabetes – Type 2 (tablets and/or diet)
o Diarrhoea (chronic)
o Diverticulitis
o Gallstones
o Hepatitis
o Gastro-Oesophageal Reflux Disease (GORD)
o Irritable Bowel Syndrome (IBS)
o Nausea/vomiting (not tummy bug)
o Pancreatitis
o Stomach/Peptic Ulcer
o Thyroid – low (hypothyroid)
o Ulcerative Colitis
o Thyroid – high (hyperthyroid)
Other_______________________________________________________________________
Concentration, mental health conditions and learning disability
o Addiction(s)
o Bi-Polar Disorder
o Dementia
o Depression
o Difficulty Concentrating
o Dyslexia
o Learning Disability
o Schizophrenia
o Sleep Problems –
o Insomnia (lack of sleep)
o Hypersomnia (too much sleep)
Other_______________________________________________________________________
30
$
Respiratory conditions
Did you use an Iron Lung when you had Polio? Do you currently use any ventilation?
o Yes o BiPAP o Yes o No
o Don’t know
o No
o CPAP o Oxygen Other
o Asthma
o Bronchiectasis
o Bronchitis
o Emphysema
o Pleurisy
o Pneumonia
o Sleep Apnoea
o Tuberculosis
Other
Sensory conditions
o Cataracts
o Glaucoma
o Macular Degeneration
o Retinopathy
o Other Eye/Vision Problem____________________________________________________
o Hearing Loss
o Labyrinthitis
o Meniere’s Disease
o Vertigo
o Other Ear/Hearing Problem____________________________________________________
Other_______________________________________________________________________
Reproductive system conditions
Female
o Dysmenorrhoea (painful periods)
o Menorrhagia (heavy periods)
o Endometriosis
o Menopausal Problems
Other_______________________________________________________________________
health survey
Male
o Erection Problems
o Prostate Problems
Other_______________________________________________________________________
Skin conditions
o Eczema
o Dermatitis
o Gangrene
o Pressure Sores
o Psoriasis
o Urticaria
Other_______________________________________________________________________
Urinary and faecal conditions
o Bladder Stones
o Cystitis
o Continence Problems – o Urinary o Irritable Bladder
o Kidney Stones
o Kidney Disease – Do you require dialysis o Yes
o Faecal
o No
31
$
o Haemorrhoids (piles)
Other_______________________________________________________________________
Other conditions
o Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) /
Post Viral Fatigue Syndrome
o Allergies – o Other______________________________________________________________________
o Cancer – which/where?_______________________________________________________
o Hayfever o Food Is there anything else you would like to tell us about your health?
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
health survey
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
_________________________________________________________________________________
Please return your form to Denise Collier in Support Services – Freepost RLSJBAGS-BUCT, British Polio Fellowship, Eagle Point, The Runway, South Ruislip,
Middlesex HA4 6BR
32
Universal
credit
What is Universal Credit?
Universal Credit is a new benefit for people
who are unemployed or on a low income. It
combines in-work and out-of-work benefits and
will include support for the costs of housing,
children and childcare, as well as support for
disabled people and carers.
Universal Credit replaces the following benefits:
•
Support with housing costs will go direct
to the claimant as part of their monthly
payment, instead of directly to a landlord.
When does Universal Credit start?
The Universal Credit Pathfinder began in April in
parts of Greater Manchester and Cheshire.
Income Support
Work Capability Assessments
Working Tax Credit
If you are sick or disabled, you will have a
Work Capability Assessment to see if your
health condition or disability affects your
ability to work.
•
•
•
•
•
•
Income-based Jobseeker’s Allowance
Child Tax Credit
Housing Benefit
The differences between Universal
Credit and the current system
The main differences between Universal Credit
and the current welfare system are:
•
Universal Credit will be available to claimants
who are in work and on a low income, as well
as those who are out of work.
•
Most people will apply online and manage
their claim through an online account. If
you cannot easily claim online your local
Jobcentre will advise you about local services
that can help you. Local authorities will also
provide internet access points and face-toface advice.
•
Unlike the current system, your benefits won’t
be suddenly taken away just because you
have started work. Universal Credit will be
steadily withdrawn as your earnings increase.
support services
Income-related Employment and Support
Allowance
From October 2013, Universal Credit will be
gradually introduced across the rest of the
UK. Full Universal Credit is expected to be
completed by 2017.
The Work Capability Assessment will find
out if you:
•
•
•
are fit for work
are able to do some work or are able to
prepare for work, or
have significant limits on your ability to
prepare for work.
The Claimant Commitment
Universal Credit creates a new agreement
between you and the Government. To receive
Universal Credit, you will need to accept a
Claimant Commitment, which sets out your
responsibilities. These will depend on your
personal circumstances. For example, if you are
able and available for work, you will need to do
everything you reasonably can to find work.
Most claimants on low incomes will still be
paid Universal Credit when they first start a
new job or increase their part-time hours.
I already receive one or more of the
benefits Universal Credit is replacing.
When I move onto Universal Credit,
will I lose benefit?
Claimants will receive just one monthly
payment, paid into a bank account.
If your circumstances stay the same, you will
not lose out on any money. When you move
•
•
+
33
+
onto Universal Credit, you will receive the same
amount of money as you do now, and may
even receive more support. If you are working
and have children you will also get help with
childcare costs.
Making the change to Universal
Credit
The Department for Work and Pensions will
contact you to let you know when the change
will take place and how to prepare.
New claimants
support services
If you are unemployed or on a low income
and not currently claiming any of the benefits
Universal Credit is replacing, you may need to
make a new claim for Universal Credit. You can
do this online at www.gov.uk/universalcredit
If you cannot make your claim online and need
further help, you will be able to use local, faceto-face services. These may be offered through
your local Jobcentre or your local authority.
Universal Credit and carers
If you care for someone who is ill, frail or
disabled and are claiming Universal Credit, you
could be eligible for extra support.
The extra support is called the carer element. It
will provide money to support carers on a low
income who provide care for at least 35 hours
per week for a severely disabled person.
To be eligible for the carer element, you must:
•
•
•
•
•
•
be the main carer
provide care of 35 hours a week or more, and
provide care for a severely disabled person.
The severely disabled person must be getting:
Attendance Allowance; or
Constant Attendance Allowance; or
34
Carer’s Allowance will continue as a separate
benefit outside Universal Credit. If you get
Carer’s Allowance now, you will continue to get it
as long as there are no changes to your situation.
Although the amount of Carer’s Allowance you
get will be deducted from your Universal Credit,
the carer element will be paid in addition to the
standard Universal Credit entitlement.
If you receive the carer element of Universal
Credit, you will not be required to prepare for, or
to look for ,work.
However, if you receive the Universal Credit
carer element and you would like to combine
caring with paid work, while Carer’s Allowance
stops as soon as you earn £100 a week, this does
not apply with Universal Credit. If you combine
caring with paid work you will continue to
receive the carer element as part of your
overall award. This will continue for as long as
you provide care for at least 35 hours a week
for a severely disabled person. Your Universal
Credit award will only reduce gradually as your
earnings increase.
For carers who receive Universal Credit but are
not eligible for the carer element, different rules
may apply.
If your caring responsibilities change from day
to day, the rules will be more flexible. You will
still need to be available for work, but will be
given more time to attend an interview or to
take up a job.
Some carers will still not be expected to prepare
for work, including if you:
•
•
are a full time carer who cannot get the carer
element because you are not the main carer
care for more than one severely disabled
person and your caring responsibilities
added together prevent you from working.
The middle or higher rate care component
of Disability Living Allowance or Personal
Independence Payment equivalent.
Carers who have a health condition or
disability
You don’t need to be getting Carer’s Allowance
to get the carer element in Universal Credit.
As a carer you may be able to claim Universal
Credit because of your own health condition or
disability. If you do, you will be asked to attend a
Work Capability Assessment. This will determine
if you would be entitled to an additional
payment, based on your limited capability
for work.
However, you cannot receive the carer element
and a limited capability for work element; you
would receive whichever is the higher of the two.
Where there are two adults in your household
and one is entitled to the carer element and the
other is entitled to a limited capability for work
element, both elements would be payable.
Multiple carers
Only one person can claim the carer element for
caring for one severely disabled person. If there
are two carers for the same person, each caring
Fulfilling Potential is the Government’s
strategic approach to enabling disabled
people to realise their potential and have
opportunities to play a full role in society.
On 2 July 2013, the Office for Disability Issues
published Fulfilling Potential – Making it
Happen. This document sets out how change
will be delivered through a comprehensive
range of actions. It recognises that the
Government alone cannot define and deliver
what needs to be achieved and describes a
new approach of partnership and support
with disabled people.
Where there are two adults in your household
and both fulfil the caring criteria but for two
different disabled people, then Universal Credit
will pay a carer element for each adult.
Having a carer’s break
If you get the carer element, you may take
a short break for a holiday and continue to
claim. If the person you care for takes a short
residential stay, you may also continue to claim.
If the person you are caring for dies, the carer
element may continue to be paid for up to
three months.
(Source: Department for Work and Pensions/Gov.UK)
If you want to chat through any of
the issues raised in this or other
articles, please ring the Support
Services Team on 0800 0180 586.
support services
Fulfilling
potential
at least 35 hours, you will need to agree which of
you will claim the carer element.
Both full and easy-read versions of Fulfilling
Potential are available to download at the
following link: http://odi.dwp.gov.uk/
fulfilling-potential/index.php
For Braille, Large Print and a summary in
British Sign Language with audio voice-over
and subtitles, email fulfilling.potential@dwp.
gsi.gov.uk
(Source: Department for Work and Pensions)
35
Who do I ask?
Part 2
support services
MORE
F
ollowing on from Who do I ask..? , which
appeared in the July edition of The Bulletin,
here is a further selection of organisations
providing information, help and advice. You may
view or download the full Useful Organisations
list from our website or order sections from the
form on page 43.
BT offers a number of products and services to
assist elderly/disabled people, including those
with mobility impairments.
Transport, mobility and equipment
The British Footwear Association is a trade
association representing British footwear
manufacturers and British-based footwear
brands. The site includes a directory of member
companies.
Assist UK
Tel: 0161 832 9757
Website: www.assist-uk.org
Assist UK leads a network of Disabled Living
Centres throughout England, Scotland and
Wales, providing advice and information on
products and equipment.
BT Including You
Tel: 0800 800 150
Website: www.bt.com/includingyou
36
British Footwear Association
Tel: 01933 229005
Website: www.britfoot.com
British Red Cross
Tel: 0844 871 11 11
Website: www.redcross.org.uk
The British Red Cross offers many services,
including short-term equipment loan, disability
equipment sales, short-term care in the home
(e.g. after being in hospital), and help with
transport (e.g. to hospital appointments). It also
provides the Options for Independence service
in Scotland (various services for disabled adults
aged 16-64).
Disabled Living Foundation (DLF)
Helpline: 0845 130 9177 (10.00am-4.00pm, MonFri)
Website: www.dlf.org.uk
DLF is a national charity providing free, impartial
advice about all types of equipment to older
and disabled people, their carers and families.
The website includes downloadable factsheets
and a database of equipment.
Disabled Motoring UK
Tel: 01508 489 449
Website: www.disabledmotoring.org
DVLA
Drivers’ enquiries:
Tel: 0300 790 6801
Tax disc renewal:
Tel: 0300 123 4321
Website: www.dvla.gov.uk
The DVLA is part of the Department for
Transport (DfT). It maintains registers of
drivers and vehicles and collects vehicle
excise duty (car tax). You may need to update
your driving licence details if your health/
disability changes.
Local Authorities may offer various local
transport schemes aimed at improving transport
for disabled or elderly people. These could
include “Dial-a-Ride” or other community
transport schemes, taxi/cab reductions or travel
concession schemes. Contact your local authority
for information about services in your own area.
Motability
Tel: 0845 456 4566
Website: www.motability.co.uk
Motability is a national charity to assist
disabled people on enhanced rate PIP mobility
component, higher rate DLA mobility component
or War Pensioner’s Mobility Supplement to fund
a car, electric wheelchair or scooter. Motability
oversees wheelchair and car schemes, and may
provide adaptations and financial help towards
vehicles and driving lessons.
REMAP
Head Office
Tel: 0845 130 0456
Website: www.remap.org.uk
or
Scotland: www.remap-scotland.org
Remap is a national charity providing oneoff technical aids and equipment to disabled
people, free of charge.
Ricability (Research Institute for Consumer
Affairs)
Tel: 020 7427 2460
Forum of Mobility Centres
Website: www.ricability.org.uk
Tel: 0800 559 3636
Ricability publishes practical, unbiased guides
for older and disabled consumers based on
professional research, including guides to
household and mobility products and driving.
Website: www.mobility-centres.org.uk
17 independent mobility centres throughout
the UK offering advice and assessment on
driving, getting in and out of a vehicle and
transporting a wheelchair or a scooter in a
car. Some offer advice and assessment on
wheelchair or scooter selection.
support services
Disabled Motoring UK is a campaigning charity
for disabled drivers, passengers and Blue Badge
holders.
Local Transport Assistance Schemes
Shopmobility (The National Federation of
Shopmobility)
Tel: 0844 41 41 850
Website: www.shopmobilityuk.org
+
37
+
A network of schemes across the UK hiring
equipment like scooters or wheelchairs e.g. for
when you are out shopping. The website allows
you to search for schemes by area.
Sole Mates
46 Gordon Road
London E4 6BU
Tel: 020 8524 2423
support services
Sole Mates is a voluntary organisation that
aims to ease the problems with footwear
experienced by amputees or people with
different sized feet. Catering for both adults
and children, it offers a partner service and
information on manufacturers and suppliers
of odd-sized footwear. Enquirers should write
enclosing
an SAE.
Life, Home and Care/Carer Issues
The Accessible Property Register
General Enquiries:
Tel: 0774 9119385
Website: www.accessible-property.org.uk
Care and Repair Forum Scotland
Tel: 0141 221 9879
Website: www.careandrepairscotland.co.uk
Northern Ireland:
Fold Housing Association
Tel: 028 9042 8314
Website: www.foldgroup.co.uk
Care & Repair is a charity set up to improve
the housing and living conditions of older and
disabled people. Services include providing
information and advice about housing,
repairs and adaptations, moving home and
handyperson schemes.
CareAware
Tel: 0161 707 1107
Website: www.careaware.co.uk
CareAware is an information, advice and
advocacy service on elderly care funding issues.
The site includes legal information, lists of
publications and a newsletter.
Care Choices
Advice Line
The Accessible Property Register enables people
Tel: 0800 389 2077
to advertise and search for accessible and
adapted properties for sale and rent, including
Website: www.carechoices.co.uk
private residential and social housing.
Care Choices is a leading publisher of care
Bereavement Advice Centre
information and produces many of the official
care directories for local authorities and
Tel: 0800 634 9494
councils. Call the free Advice Line to access the
Website: www.bereavementadvice.org
database of UK registered care providers, or
Bereavement Advice Centre is a not for profit
complete the online form.
organisation that gives practical information
Care Quality Commission
and advice on the many procedures that face us
Tel: 03000 616161
after the death of someone close.
Website: www.cqc.org.uk
Care & Repair
England
Tel: 0115 950 6500
Website: www.careandrepair-england.org.uk
Wales/Cymru
Social Care and Social Work Improvement
Scotland (SCSWIS)
Tel: 0845 600 9527
Website: www.scswis.com
Tel: 029 2067 4830
Website: www.careandrepair.org.uk
38
Healthcare Improvement Scotland
Cruse Bereavement Care Scotland
Tel: 0131 623 4300
National Phoneline: 0845 600 2227
Website: www.healthcareimprovementscotland.
org
Website: www.crusescotland.org.uk
Care Standards Inspectorate for Wales
National Office:
Tel: 0300 062 8800
Website: www.csiw.wales.gov.uk
The Regulation and Quality Improvement
Authority (Northern Ireland)
Cruse Bereavement Care is the leading UK
charity specialising in bereavement. It provides
free support and offers information, advice, and
education and training services.
EAC Housingcare.org & First Stop
First Stop Advice Line: 0800 377 7070
Website: www.housingcare.org
Carers UK
Find Me Good Care
CarersLine: 0808 808 7777 (Wed & Thurs
10.00am-12.00pm and 2.00 – 4.00pm)
Website: www.findmegoodcare.co.uk
Website: www.rqia.org.uk
Carers Wales
Launched by the Social Care Institute for
Excellence, Find Me Good Care is an online
service to help people find the right care and
support for their needs. The site includes a
directory of homecare and residential providers,
plus information on paying for care, care and the
law and what to do if things go wrong.
Tel: 029 2081 1370
Foundations
Website: www.carerswales.org
Tel: 08458 645210
Carers Northern Ireland
Website: www.foundations.uk.com
Tel: 028 9043 9843
Foundations is the national coordinating body
for Home Improvement Agencies in England.
Home Improvement Agencies help older,
disabled and vulnerable homeowners or private
tenants to repair, improve, maintain or adapt
their homes. Some also provide services to
council and housing association tenants.
Website: www.carersuk.org
Carers Scotland
Tel: 0141 445 3070
Website: www.carersscotland.org
Website: www.carersni.org
Carers UK aims to be the voice of carers
and provides information on matters relating
to caring. The website includes information
about campaigns, work, benefits and
publications.
Cruse Bereavement Care (England, Wales,
Northern Ireland and the Isle of Man)
Daytime Helpline: 0844 477 9400
Website: www.crusebereavementcare.org.uk
support services
The Care Quality Commission is the
independent regulator of health and social
care in England.
EAC (Elderly Accommodation Counsel) has
combined its two websites to provide support
and information on issues including how to
maintain, adapt or improve homes, find care or
home help services, move to retirement or extra
care housing, or to a care home.
Tel: 028 9051 7500
Home Heat Helpline
Tel: 0800 33 66 99 (9.00am-6.00pm, Monday to
Friday).
Website: www.homeheathelpline.org
Run by the Energy Retail Association, the Home
Heat Helpline is a free, central phone
+
39
+
number for people concerned about paying
their energy bills. Experts can give you practical
advice on grants and how to save money on
your heating bills, by making your home more
energy efficient.
A directory of nursing homes, the website
includes information about fees, questions to
consider when choosing a home and useful
links.
Independent Living Alternatives
Helpline: 020 7359 8136 (Mon-Fri, 9.30-4.30pm)
Tel: 020 8906 9265
Website: www.relres.org
Website: www.ILAnet.co.uk
The Relatives and Residents Association
provides information and support for older
people needing or living in residential care and
their families and friends.
support services
ILA is an organisation of disabled people
providing a range of personal assistance (PA)
services, for the purpose of independent living
within the community.
Relatives & Residents Association
Shelter
Leonard Cheshire
Housing advice helpline: 0808 800 4444
Tel: 020 3242 0200
Website: www.shelter.org.uk
Website: www.lcdisability.org
Shelter offers information and advice to those
who are homeless or in housing difficulties,
campaigns on the UK’s housing problems and
lobbies for changes in housing legislation and
policies.
Leonard Cheshire is the largest voluntary
sector provider of care and support services
for disabled people, including home care,
residential and respite care, supported housing,
day services, IT and work training services and
the Ability Media centre, which provides training
in all forms of digital media.
Livability
Tel: 020 7452 2000
Website: www.livability.org.uk
A specialist provider of residential and nursing
care for people with physical and learning
disabilities, Livability also offers supported living,
lifestyle choices projects and accessible holiday
accommodation, plus a school and further
education colleges.
Mobility Friendly Homes
Tel: 08456 120 280
Website: www.mobilityfriendlyhomes.co.uk
Mobility Friendly Homes is an estate agency and
lettings service that specialises in accessible and
adapted properties.
Nursing Homes Directory
Tel: 07092 035131
Warm Front
Website: www.gov.uk/warm-front-scheme
Scotland
Energy Assistance Scheme
Tel: 0808 808 2282
Website: www.energysavingtrust.org.uk/
scotland
Wales:
Nest
Tel: 0808 808 2244
Website: www.nestwales.co.uk
Northern Ireland
Warm Homes
Tel: 0800 988 0559
Website: www.warm-homes.com
The Warm Front scheme providing grants for
warmer homes ended on 19 January 2013. You
cannot apply for a Warm Front grant now, but
existing applications will be processed.
Website: www.carehomes.net
40
Grants & Funders
Access to Work
Website: www.gov.uk/access-to-work
Access to Work is a Jobcentre Plus scheme that
helps meet any extra employment costs that
result from a person’s disability. This can include
helping to pay for specialist equipment or
adaptations to equipment or premises.
British Gas Energy Trust
Tel: 01733 421060
Website: www.britishgasenergytrust.org.uk
The British Gas Energy Trust is an independent
charitable trust that provides grants to
help individuals and families meet arrears
of energy charges and other household bills
and costs.
Turn2us
Helpline: 0808 802 2000 (Monday to Friday,
8.00am-8.00pm)
Website: www.turn2us.org.uk
Turn2us is an independent charitable
service that helps people access the money
available to them – through welfare benefits,
grants and other help. The website includes
a grant search facility, benefits checker and
information on a range of money
management issues. n
I’ll Give It Five
The book paints a vivid picture of Edith’s
life in Manchester and Goole (Yorkshire)
as well as the people in it, particularly her
husband Jack. Edith writes
warmly about her faith
and her many relatives
and friends and the role
they played in helping
and supporting her in
overcoming problems as
they arose. The book is full
of humour, not least in the
list of wheelchair pushing
styles from “Purposefully”
to “Pirouetting and
Pancaking”, and adventure
including a trip to
Oberammergau for the
Passion Play and cruises in
Norway and Alaska.
Edith’s husband Jack was
a Rotarian who was involved in the Rotary
initiative of PolioPlus – a project designed to
eradicate Polio throughout the world. While
Jack died in 1993, Rotary’s work continues as
there are still pockets of Polio in parts of the
world. A donation of £1.50 will be made to
Rotary’s PolioPlus Campaign for every one of
Edith’s books sold, so that while in 1949 Edith
was not able to benefit
from the Polio vaccine,
many others throughout
the world
now will.
support services
This short book tells the life story of Edith
Lundy from the early years of her marriage and
an encounter with Polio just after the Second
World War right up to today.
Review by Denise Collier
The book costs £7 (of
which £1.50 will go
to Rotary’s PolioPlus
Campaign) and is
available from: Edith
Lundy on 01625 532466
or lundyedithm@
gmail.com, or from
Rotarian Dr Keith Graham
on 0161 439 7421 or
keithlesleygraham@
hotmail.co.uk
41
The benefit
cap
National implementation of the benefit
cap started on 15 July 2013. All appropriate
households will be capped by the end of
September 2013.
The cap will apply to the combined income
from the main out-of-work benefits (including
Income Support, Jobseekers Allowance,
Incapacity Benefit and Employment and
Support Allowance – except where the Support
Component has been awarded), plus the
following:
•
•
•
•
•
•
•
•
•
support services
Bereavement Allowance/Widowed Parent’s/
Mother’s Allowance
Carer’s Allowance
Child Benefit
•
•
•
•
•
•
•
•
Attendance Allowance
The support component of Employment and
Support Allowance (ESA)
War Widow/Widower’s Pension
Disability Living Allowance (DLA)
Personal Independence Payment (PIP)
Industrial Injuries Benefits
Armed Forces Compensation Scheme
Benefits
War Pension Scheme payments (including
War Widow/Widower’s Pension and War
Disablement Pension)
Child Tax Credit
The cap will be:
Guardian’s Allowance
£500 per week for couples and lone parents
Housing Benefit
£350 per week for single adults.
Maternity Allowance
Further information, including a benefit cap
factsheet, may be found at the following link:
http://dwp.gov.uk/adviser/updates/benefit-cap/
Severe Disablement Allowance (SDA)
Widow’s Pension
Those who are entitled to Working Tax Credit or
Heating
Grant
application
forms
Heating Grant application
forms will be despatched
in the November Bulletin.
Closing date for
completed Heating Grant
applications is Monday 2
December 2013.
42
are in receipt of the following benefits will be
exempt from the benefit cap:
(Source: Department for Work and Pensions (DWP)
Tell us once
Tell Us Once is a service that enables people to notify up to
28 central and local government services of a birth or death
just once, saving time and stress. Tell Us Once is led by the
Department for Work and Pensions (DWP( but delivered in
partnership with central government departments and local
authorities. It is available to 51 million people and has helped
over half a million people to date. The service is now offered by
89% of local authorities in the UK, with more signing up this year.
Further information is available on www.gov.uk
(Source: Department for Work and Pensions)
support services
PPS
o Post Polio Syndrome: A practical guide (£5 + £2.50 P&P) o Post Polio Syndrome: An introduction
o Pacing for Activity & Exercise
o List of Healthcare Professionals
o Going Into Hospital
o Cold Intolerance
o Complementary Therapies o Medication
o Palliative Care
o Dental Care & Anaesthesia
o BPF Support Services
o Healthy eating – a guide for people with Polio and Post Polio Syndrome
o Swallowing problems – a guide for people with Polio or Post Polio Syndrome
o Pain and how to manage it – a guide for people with Polio or Post Polio Syndrome
Orthotics
o List of Orthotics Manufacturers
o Orthotic Services
o Callipers and Insoles through the NHS
o Orthopaedic Footwear through the NHS
o Problems with Footwear and Orthoses?
o Orthotics and Surgical Footwear thro’ the Private Sector
Benefits
o Disabled Facilities Grants Guide
o Disability Living Allowance – Guide to filling in the form (upgrades only)
o Attendance Allowance – Guide to filling in the form
Useful Organisations Contact List
o Welfare Rights, Benefits & Legal
o Other Advice & Information
o Life, Home & Care
o Polio & Post Polio Syndrome Organisations
o Other Health Matters
o Employment, Leisure & Interests
o Transport, Mobility & Equipment
o Grants & Funders
o Other (Please state and we will try to find!) ………………………………..…..…………………………………………………………………………
……………………………………………………………………………………………………………………………………………………………. . . . .
NAME………………………………………………………………………………….………………….
ADDRESS…………………………………………………………………………………………………
………………………………………. POSTCODE ………………………………...……………………
TELEPHONE………………………………………………….AGE ………………………………………
Please send this form to Support Services, British Polio Fellowship, Eagle Point, The Runway, South Ruislip, Middlesex HA4 6SE
Phone: 0800 0180 586 Email: infobenefits@britishpolio.org.uk
In addition to the information and support we provide over the phone, the Support Services team also produces a wide range of
information leaflets and factsheets that can be sent to you on request. If you would like to receive any of these, please tick the appropriate
box(es) below. All leaflets are free except Post Polio Syndrome: A practical guide.
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43
Inspiring words
from remarkable women
book review
Inspirational Paralympian athlete, author and
Ambassador for The British Polio Fellowship, Anne Wafula
Strike, discusses One Hundred Lengths of the Pool, by
fellow Ambassador Julia Roberts.
“I met Julia Roberts
for the first time at The
British Polio Fellowship
Team Splash event
back in July, and
in speaking to her
through the course
of the day, I became
interested in her life and her book and what it was
all about and why it was called what it was. Julia
kindly presented me with a copy of One Hundred
Lengths of the Pool so I had the opportunity to
find out more.
“I found it a lovely, inspiring book and unusual in
a positive way, particularly in its use of numbers.
Julia’s story doesn’t start at the beginning but
rather Chapter 1 is her number in numerology,
Chapter 2 relates her coming second in a writing
competition age 10, and so on. It was not really
until Chapter 11 that I began to appreciate why
she had laid out the book in the way she had.
Julia talks at length about contracting Polio when
just 14 months old in Chapter 14. You get the
impression someone is pouring out their soul on
paper, and that certainly struck a chord with me.
“Julia used to swim 100 lengths of her own
12-metre pool, a habit she kept up from childhood
to strengthen her leg weakened by Polio. For
each length she swam, she thought of things in
her life associated with the number and in 2011,
Julia realised she could transform her watery
reminiscences into the book she had always
wanted to write.”
44
There are clear parallels with Anne’s own
autobiography – In My Dreams, I Dance – and
Julia’s. Both books are moving accounts of two
women, who did not have the easiest of starts
in life thanks to Polio, but who have gone on to
be hugely successful in their respective careers,
write books and inspire a whole generation to
reach for their own dreams in the process; the
similarities are not lost on Anne:
“It is fascinating to read books from the perspective
of being an author. It makes you appreciate the
effort that has gone into something. They say
you will never understand a person until you
have walked a mile in their shoes, and Julia takes
you along with her. I felt I was having a personal
relationship with her and the material. This is
much down to the way it is written, but I also felt
an emotional connection with what has gone into
producing the book and the life that led up to it.”
Anne’s autobiography is a powerful account
of the challenges faced by an academicallygifted child with Polio growing up in Africa and
fighting to make the best of the very limited
opportunities available.
Contracting Polio at the age of two and a half,
Anne overcame the prejudice in her Kenyan
village, which was so horrible, it is difficult
for many of us to imagine. A world where
neighbours believed she was cursed and called
her a snake because of the disability Polio had
left her with, leaves you despairing of the dark
side of human nature and wondering how
Paralysed below the waist, Anne also lost her
mother, and as if these traumas were not enough
for a young girl, she was sent away to school
far from home. Despite these setbacks and
contending with prejudice, her disability and a
military coup, Anne achieved fantastic academic
results. She went to university and qualified as a
teacher, ultimately moving from a world with no
running water to make a new life in Britain.
Anne’s account matches Julia’s for inspiration, by
the way the spirit of both women shines through
against all odds. Anne remains modest about her
own story – which was a past winner of the BBC’s
‘My Story’ competition – and her book, which
was published to rave reviews, but she has much
praise for Julia’s book, in whose struggles it is
hard not to see a reflection of her own:
“Julia’s book is amazing, inspiring and captivating,
and she uses humour in really clever ways. She
does not hide the fact that she had a tough time
of things at certain points in her life. And having
written about personal and upsetting events
from my own past, I know how hard it can be to
acknowledge this story to yourself, let alone share
it with others. Julia pulls no punches, but just when
you want to feel sorry for her, the humour comes
in and lifts the mood. It takes you on a journey and
you definitely feel that you are travelling with her.”
book review
she ever survived – let alone grew up to be a
celebrated author and Paralympian athlete.
For both women, their stories are not an
invitation to feel pity. Rather than any mawkish
sorrow, both books are a triumph of the human
spirit. Anne went on to be the first East African
to compete in her sport of wheelchair racing
internationally. When she became a British
citizen she joined Team GB and became a torchbearer for the Paralympian team and a role
model and inspiration for a new generation of
women, while Julia became one of the most
recognised faces on television.
“Julia uses the line in her book ‘what doesn’t kill
you makes you stronger’ and it never sounds like a
cliché to those who have been through hard times.
The words are so true and I’m sure will ring true to
others living with Polio. We are all survivors,” adds
+
45
+
book review
Anne. “I learned a harsh lesson very
early in life that the world does not
owe you anything and that life isn’t
fair. Despite Polio, I had been given
my life and a chance to live and that
is what being alive is all about. Julia
also says that ‘If I die tomorrow, at
least I can say I lived’ and that is a
sentiment that resonates with me.
The secret, if there is one, is how
you bring out the positive from the
negative in life and to never give up.”
One Hundred lengths of the Pool
and In my Dreams I Dance give the reader an
insight into the odds stacked against disabled
people and how being a “differently able”
woman means the prejudiced don’t think you
deserve the same chances as others. If you
are lucky enough to come from a privileged
background, (in Anne’s case that means most of
us) it reminds you just how lucky you are.
“Writing about yourself is a difficult process.
While it is ultimately cathartic, it doesn’t feel like
that at the start. I know from my own work that
writing about difficult things from your past and
your childhood is a traumatic experience – it just
brings it all back. It all comes flooding out, which
is good when you have pages to write, but it is also
ever so slightly scary.
“I find my writing amazingly therapeutic and
reading Julia’s book I get the feeling she had a
similar experience. Your problems and struggles
obtain a certain perspective once you have your
life down on paper. I write when I am happy, I write
when I am sad. It really does help to just scribble a
few words sometimes. I lived half my life in Africa
and what you sense is the lack of opportunity.
“I was never looking for sympathy and neither was
Julia – and I imagine nor are most people living
with Polio. What we want is a chance; equality and
an opportunity to show what we can do.”
When Julia left hospital with badly wasted
muscles down her left side and wearing a
calliper, her parents were told she would always
need to wear it. This diagnosis was something
46
they simply refused to accept.
Anne didn’t have her mother to
help her but she and her family
shared Julia’s single-minded
determination not to let Polio
stop her living life to the full and
ultimately being an inspiration for
others.
“It always nice when people tell me
I am an inspiration for them. We
all have inspirational figures in our
lives and reading Julia’s book was
certainly an inspiration for me. She
has done so many things, despite her Polio – she
has been a DJ, a dancer and a presenter, and
travelled widely.
“It’s that point about loving life and taking the
opportunities you are presented with. The story is
one of a remarkable woman who loves life and it
all just comes pouring out.
“It flowed so easily, it does make you wonder if all
of that story and emotion was just pent up inside
waiting to flood out. It’s sad and emotional but
certainly leaves you feeling uplifted and I would
strongly recommend reading it to anyone.”
But what of Anne’s next move? While the 2016
Paralympics is on the horizon, Rio is not part
of her immediate plans, although in exclusive
news for Bulletin readers, we can reveal that a
new book is in the pipeline:
“I am working on something new for publication,”
Anne acknowledges. “I don’t want to say too
much right now, but it is something new and very
unusual, which I think Julia’s work has shown me
can be a positive. I’m very excited about it and I’m
looking forward to completing it.”
The old saying has it that there’s no such
thing as an ordinary life – there is just life;
but these accounts from two remarkable
women prove there are people out there living
extraordinary ones.
One Hundred Lengths of the Pool by Julia Roberts
and In My Dreams I Dance by Anne Wafula Strike
are available now from all good bookshops. n
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47
Diary dates
Berkshire Branch
30 November – Social
19 October – Tea at Cliddesden
4 December – St. Mary’s Players, Welling, Panto
Dress Rehearsal
16 November – Phoenix Centre – Tea and
games afternoon
7 December – Christmas Lunch
South of England Region
15 September – Regional Lunch
Merseyside Branch
14 September – Boat trip
Worthing & Sussex Branch
6 October – Branch Lunch, Arundel
North West Kent Branch
19 October – Get together, Durrington
21 September – Collection at Sainsbury’s
Crayford
16 November – Get together, Durrington
7 December – Grand Xmas Draw, Durrington
5 October – Social
2 November – Social
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49
Goodbye
A
No 1
branch & regional news
t the beginning of 1954, as Chairman of
the Newcastle and District Branch of the
Infantile Paralysis Fellowship (now The
British Polio Fellowship), I approached the 1954
Kings College (now part of Newcastle University)
Rag Committee asking for a donation towards
the purchase of premises to house a hostel and
work scheme in Newcastle. In previous years
Rag profits had always been divided between
various charities, but on this occasion they
decided to give the whole lot to the Newcastle
Branch. As luck would have it, a large house
came up for sale in Jesmond three months
before the actual Rag Week, so I and another
businessman gave our personal guarantees in
order not to lose it. The price was £6,500! So generous were the people of Newcastle that
the final cheque for £13,332 was nearly double
what had been anticipated. The house was
converted well within budget, to accommodate
about 12 people with Polio. A work scheme
was set up teaching them and other local
people with Polio silk-screen printing and
fretwork. Eventually, of course, it housed the
highly successful Christmas Card Department
Celebrating our
Leicester and District Branch celebrated
its 60th Anniversary with two special gettogethers. First we had a lunch at Kilworth
House Hotel, near Lutterworth, for 30
members, with special guest Pam Jones,
National Chairman of The Fellowship.
employing over 30 people with Polio on proper
wages, restoring self-confidence, pride and selfesteem. See page 60 to read about how Joan
Silcocks was able to benefit from the centre. We
proved that with a little TLC and a few minor
adjustments in the workplace, those thought to
be unemployable were capable of competing in
the open market. About 30 years later the house was closed down,
sold for around £135,000 and developed into
sheltered housing. The Fellowship bought two
of the ground-floor units as a centre for the
Newcastle Branch at a cost of about £35,000. They lasted 25 years or more but dwindling
numbers forced them to be sold as two separate
flats, resulting in a further approximately
£225,000 going into the Fellowship’s funds. So
not only has it been a very lucrative venture, but
it was unique for its time, proving to the world
what is freely accepted today.
I am sad to close the door on No1 Lindisfarne
Road because it was, for many, many years, a
major part of my life of which I am very proud.
Joe Fisher, National Patron
60th Anniversary
Two weeks later we had a buffet lunch for over
40 members at the Marriott Hotel in Leicester.
The photo shows the happy occasion.
Many thanks to our team of organisers for
these very enjoyable events, and thanks too
to Seth Thuita for the photograph.
Harry Parkin
50
Diamond
Y
celebration
orkshire Region
went down the
mine as part of the
Diamond Anniversary Year
of the Region.
Known as Black Diamonds,
coal is a very big part of
Yorkshire’s heritage, so it
was fitting that a visit to
the National Coal Museum
in Wakefield (www.ncm.
org.uk) formed part of
this year’s events.
The day was a great
success on many levels,
including the company,
which of course is second
to none! The meal was
very nice indeed,served
by staff who were attentive and very helpful.
In terms of education, there is so much to
learn about the men, women and children
who worked both over and underground. Of
course, helping to make the day a success was
wonderful weather and the ability to sit outside
with ice-cream after looking at all the exhibits.
The museum is recommended by all as a great
day out whatever your age or interest.
Forty-six members of
the Region enjoyed a full
day at the museum with
26 of them going on the
mines tour, which took
them to the same depth
underground that the
Blackpool tower is high!
Jan Taylor
Do write in and let us know what events your Branch or Region has
organised. Please also send good quality photos if you can. Please send to
The British Polio Fellowship, Central Office, Eagle Point, The Runway, South
Ruislip, Middlesex HA4 6SE.
51
South of England Region
About the Region
The South of England Region consists of seven Branches – Berkshire, Dorset, East Kent, North West
Kent, Southampton, Sutton and Worthing and West Sussex.
Currently Bob Stephens (Worthing) is Chairman; Mary Gillies (Worthing) is Secretary and Madeleine
Henry (Southampton) is Treasurer. Each Branch sends along representatives to share ideas and
thoughts at two meetings per year. Discussion on joint events, the Regional Lunch and Regional
Games takes place and we are especially keen to hear about each other’s trips and outings, as this
gives us ideas for our own Branches.
The Regional Games are to be held at The Phoenix Centre in Reading on Saturday 9 November.
Games will include Boccia, Scrabble, Standing Darts, Seated Darts, Dominoes, New Age Kurling,
Cribbage and Draughts. From these games, a team will be selected to represent the Region in
the National Games next year. All members are welcome…..the seriously competitive ones and
also those who want to come along for the socialising and a bit of fun! If you are interested in
participating, live in the Region, but are a Central Office member rather than a Branch member,
then contact our Sports Rep. Mary Gillies on 07870811732.
Anyone interested in learning more or in making contact with any of the Branches can contact
Sue Brown on 01635 253222 or at s.brown734@btinternet.com and she will put you in touch.
Berkshire Branch
The Branch has discovered
a very useful venue in
the Phoenix Centre in
Reading and our most
recent meeting was for tea
there. The highlight of the
afternoon, however, was
being able to enjoy and
benefit from head and shoulder, hand and foot
massage. This was a new venture for us, but it
was well received by those attending.
Plans to visit Buckingham Palace in September
are now well advanced and eagerly anticipated.
We are also taking in the Royal Mews.
We are looking forward to welcoming members
from across the region to Reading for the annual
Regional Lunch.
52
North West Kent
Branch
The Branch had two very enjoyable outings
recently. Instead of a social in July, we went to
Gravesend Old Town Hall for afternoon tea.
After sandwiches, scones and cakes we listened
to a very interesting talk about the history of the
building and had a look at some of the rooms.
In what used to be the Old Court Room, a trap
door was lifted, to show us the steps that led
down to the cells for the convicted prisoners.
Shortly after saw us enjoying the sun at
Folkestone. Most of us had a carvery dinner at
the Burstin Hotel, then either wandered to the
Fish Market and beach, or up the hill to the Leas.
A splendid time was had by all!
Worthing & West Sussex Branch
The Branch summer outdoor social activities are
coming to an end.
A visit to the Planetarium in Chichester was
well supported and enjoyed but unfortunately
we are now of an age when most of the really
interesting facts are not retained for too long!
Although it poured with rain till 11.30, the
Branch BBQ was then enjoyed by over 60
members in blazing sunshine. There is a
small debate whether it was the 45th or 46th
consecutive BBQ (although we did postpone
one once).
One of our Branch Polio members is starting a
project in Uganda to help physically disabled
adults get meaningful employment. At the
moment she needs second-hand laptops – just
three or four, so if you would like to give your
old machine a very good home, just contact Sue
Brown for more information.
East Kent Group
The East Kent Group recently enjoyed a talk by
Bob Ludlow who runs a boat charter company.
He told us about leaving the legal profession
behind and enjoying life on the water after
he had received training. He had certainly had
some amusing experiences.
we have a speaker coming to our social to talk to
us about the Kent Air Ambulance service, so let’s
make it a well attended event for this worthy
charity. If you haven’t been to one of our socials
before, come along and enjoy the afternoon
with us.
On 4 July we had a lovely afternoon tea at the
Dover Marina Hotel, which overlooks the sea.
Everyone enjoyed it so much, we returned there
for lunch on 5 September.
We also have our first Annual Lunch being held
at The Red Lion in Bridge (Near Canterbury) at
midday on 24 October. For all the above events
please contact the East Kent Polio Group Leader
via Central Office.
On 26 September at Sellindge Village Hall, 2pm,
The Regional Lunch, hosted by Berkshire
Branch, is next followed by our Branch’s Annual
Lunch near Arundel. Our Get-togethers during
the winter are now planned with speakers to
each event except the Christmas Tea party
and Annual Draw, which reminds me, the draw
tickets have just arrived! This year we have
modernised the prize list, which includes a
tablet, a sat nav, and a Kindle as well as all the
usual Christmas goodies. Tickets are still only
£1 a book of four tickets (minimum five books),
so if you would like to win some of these
fabulous prizes, just see our website
www.worthingbpf.co.uk
53
A year of varied
activities
The Cheshire, Wirral and North
Wales Group has had a varied
and interesting programme
since my last report, after the
AGM in May last year. In June,
one of our members held a
flat-warming party in a new
complex, built with disabled
people in mind. We were all
very impressed by the wide
corridors, huge communal
lounge, and buzzing, helpful atmosphere.
In July we were visited by Professor Young from
Walton Centre in Liverpool, where she leads
research into Post Polio Syndrome (PPS) in the
Neurological Unit. She gave some useful hints
on how to get the most out of a consultation.
In August, some of us nearly went to sleep
during a meditation section of our introduction
to yoga. We were able to do some static exercises
as yoga is suitable for any age and ability.
We paid another visit to the Gordale Garden
Centre in September. It was bulb-buying time.
We were advised by a member of staff who
gives excellent talks and we
had a good tea.
In November, we were very
pleased to welcome Ted Hill.
He told us of his dreams for
The Fellowship and asked
for ours. Not being bashful
types, we put forward our
suggestions.
In February, one of our
members showed us fantastic
photographs he had taken underwater during
diving trips in exotic places.
In March, the Mayor of Ellesmere Port visited and
we had some lively political discussions.
To round off the year, we had our anniversary
lunch and AGM in May at the Woodcote Hotel in
Hooton (pictured). Over 20 members attended
and we were joined by Fellowship Chief
Executive Ted Hill and our President, Bert Massie.
We have welcomed several new members and
on the whole, had a lively and successful year,
marred only by the deaths of two members.
Janet Dines
Tea in the afternoon
The Notts and Derby Branch held a ‘Tea in the
Afternoon’ event on 27 July for members and
friends at Langley Mill. We had scones, jam,
cream, Pimm’s and tea and coffee, while being
entertained by the Sandiacre Male Voice Choir. There were happy smiling faces all round. Thanks go to the committee and helpers for
managing the afternoon.
Barbara Worrall, Chair
54
Every issue we have a bunch of carnations courtesy of
Le Tourneurs to send to the writer of one letter, so send
in your letters now! This issue Ann Gillanders reflects on
the different attitudes she has encountered when using
assorted walking aids.
Mixed reactions to
walking aids
I have been obliged to use various walking aids
over my life as I had Polio at the age of 10 and I
am now 73. I have always been surprised at the
mixed reactions to these functional pieces of
necessary equipment.
When I tore ligaments in my good leg, I used
a cane walking stick but hated the ‘grandma’
image it represented. Later, the NHS produced a
much lighter aluminium stick, which was worse.
I immediately felt placed among the old and
infirm, rather like that road sign depicting two
old people bent over walking sticks.
I was not ready for that image and hated the
pitying looks from passers-by. However, people
were giving way to me in shops, allowing me to
jump queues and offering me seats.
After surgery to help repair my knee, I had to
use a zimmer frame. This toppled any notion of
throwing off the old and decrepit image. This
dreadful object propelled me to and from my
bed to the bathroom, plunging me into deeper
your letters
Please note that as The Bulletin is made available on the
internet, your letters may be read by a wider audience. If you
would prefer for your name to be withheld, please let us know when you write.
despair as I clattered along the hard floor and
shuffled awkwardly through narrow doorways
– at one time I got stuck in the toilet! I had
one waitress addressing the family member
accompanying me, saying: “Let me know when
she is ready to order and I have sat you near the
disabled loo.”
Once I started using crutches I became quite
adept at manoeuvring myself around, swinging
along pavements at quite a good speed. If you
are on crutches, you are not necessarily infirm.
People were really different. They asked how I
was getting on.
However, life has changed again and I am now
using an electric wheelchair. At least you can get
yourself around at quite a speed, provided there
are no steps. Oh, and be very careful in shops. A
friend of mine rode into a huge stack of tins of
chocolates on special offer – you can imagine
the embarrassment of that . . .
Ann Gillanders
Congratulations on The Bulletin
I’ve just received my Bulletin, and WOW – what
an inspiring issue! The British Polio Month
excitement and fun just leaps out of the pages.
I think the advan with the poster was a
wonderful idea.
BIG congratulations to all of you, and to everyone
else involved.
Marion Whitby, Notts & Derby Branch 55
Iron lung brings back
your letters
memories
I was very interested to read the letter from
Chris Kushner, ‘Museum is a real find’, in the
July/August Bulletin. He expressed pleasant
surprise at finding one of the old iron lungs at
the Thackray Medical Museum. This reminded
me that there is also one of the old iron lungs on
display at the Army Medical Services Museum in
Keogh Barracks, GU16 6DD. The museum offers
free admission.
It is identical to those that helped patients with
Polio at the British Military Hospital in Tripoli,
Libya in the late 50s and early 60s. Working
on the Polio wing was one of the hardest but
most rewarding jobs that I ever did. I messed
up my own lumbar spine with lifting, turning
and feeding patients and now have mobility
problems. Nevertheless, if the need arose and I
was capable, I would do it again.
Many years later, as a biology teacher, a
couple of my colleagues suffered from Post
Polio Syndrome, although it took ages for the
medics to make a diagnosis. More recently,
as a clinical hypnotherapist, I have met other
people with Post Polio Syndrome (PPS) , one of
whom encouraged me to join The British Polio
Fellowship because of my interest. I did just that
a few years ago and have never regretted it.
John Hempstead
Exploring wider
health conditions
Thank you so much for the Medical Alert Card,
which is already in my wallet. The campaign
to create awareness of the late effects of Polio
seems to be working. I no longer need to explain
my problems to health professionals – they do
seem to be aware of the condition now. After
years of referrals to the wrong departments at
various hospitals, I now go straight to Neurology.
56
I would be grateful for any information
available through The Fellowship or advice on
where to go for help.
Marjory Dench
A further complication has just arisen as I
have been diagnosed with polymyalgia. I
have just started a course of treatment with
Prednisolone, so the long-term prognosis is
uncertain. Is this disease common amongst
people with Polio?
This edition of the Bulletin includes a survey
(see pages 29-32) asking people who have had
Polio about other health conditions they are
experiencing (comorbidity). We would encourage
as many members with Polio as possible to
complete and return it to us. This is an issue that
we are frequently asked about and as there has
been little comorbidity research up until now, we
have limited information to give to enquirers.
My arms are quite badly affected at present
and this is having a knock-on effect because I
rely on upper body strength to compensate for
leg and back weakness.
In the meantime, if any members have experience
of polymyalgia and relevant treatments to share,
please contact Central Office and we can forward
your responses to Marjory.
Rosalind Evans,
Holiday Programme
Co-ordinator
Email: rosalindevans@
britishpolio.org.uk
Tel: 020 8836 3686
Grant applications
H
ere is the timetable for submitting holiday grant
applications. The Panel normally meets in the middle of
the relevant month. To request an application form, please
contact Rosalind Evans on 020 8836 3686 or email:
rosalindevans@britishpolio.org.uk. Please remember to send
in your application well in advance of when you want to go on
holiday. Your travel date should be at least six weeks after the
relevant Grant Review Panel. Grant pledges are not made or paid
retrospectively. So, if you plan to go on holiday in January 2014,
your application should reach us before the end of October in time
to be considered at the November Panel meeting.
Applications received
Review Panel meets
Between 1 Sept and 30 October
Between 1 Nov and 31 December
Between 1 January and 28 February
November 2013
January 2014
March 2014
If you are thinking about arranging a branch holiday and would like
financial assistance, contact Rosalind for application forms. We are
keen to offer support to Branches and Groups as well as individual
applicants. The same timetable applies for branch applications.
holiday programme
The Ron Scudamore
Holiday Programme
aims to provide
information and
financial assistance
to enable people with
Polio and Post Polio
Syndrome (PPS) to
enjoy accessible and
affordable holidays.
Classified advertising
The Classified Advertising
section applies to items
for sale or wanted.
Classified ads can be
placed for a maximum of
two issues. This service
is free to members.
Non-members £5.00
for the first 20 words
then £0.20p per word.
Maximum number of
words 50. Deadline for
November/December
issue is 1 October 2013.
Send to: Shirley Russell,
Eagle Point, The Runway,
South Ruislip Middx. HA4
6SE. Tel: 01953 451620.
Publication of classified
ads does not imply
that The British Polio
Fellowship endorses any
goods or services.
FOR SALE
Electric Adjustable Bed – Head
and foot independently adjustable
via hand controller. Cream Jacquard
3’6” x 6’6 with unmarked memory
foam mattress and 2 washable
zipped covers. £250 ono. Contact
01276 510277.
Brand new Hotter Naomi
shoes – Colour Beige Nubuck
lace ups. Right foot 6½. Left foot
4½. Bought in a sale for £30.
Will accept £15. Contact 07729
342269.
Brand New – Four wheeled
Walker with brakes, bag on front
seat with compartment. Red 6
months old, only used once. Want
it to go to a good home. Contact
07514 758 495.
Lift for Wheelchair – Ricon
Tril Lift. Rated Capacity 350KG.
Works off remote. £5,500. new. Will
accept £1,500 ono. Contact 01633
265357 or 07506992025.
Hoist – Was fitted into a Fiat
Panda car. Will lift a small mobility
scooter. No monies wanted. Needs
to be dismantled. Contact 01842
862209.
Hotter Sandals – Left foot size
5 Right foot size 3. Brand New. 2
Pairs Beige/ 2 Pairs Navy. £25 per
pair. Postage Free. Contact 01502
560374.
Wanted
Double Mattress – Preferably
orthopedic. Must be in good
condition. Contact 01309 358 623
or 07874 368 981.
57
What’s in a
F
name?
By Barry North
rom the very day that The British
Polio Fellowship came into
existence in January 1939, there
has always been a need to promote the
cause of people who are disabled by
Polio. That need has not changed today,
although the situation of Polio-disabled
people and the methods that are used
for publicity have changed greatly.
history corner
In the early years of The Fellowship
the only means of promoting a cause
were printed items in magazines and
newspapers and through the cinema;
but the founders of The Fellowship
were quick to use the methods that
were available to them.
58
With any publicity promotion it
is important, then as now, to grab
the attention of the public – the
Vera Lynn cuts the cake at a National Christmas Party in
right picture, a good headline or a
the 1950s.
celebrity name can catch the eye
and get people to read the article.
way of writing for the day. The leaflets had titles
In many instances people had only a poor
such as ‘The Problem of Infantile Paralysis”’ and
understanding of Polio (or Infantile Paralysis as
‘The Truth about Polio’. They did not hide the
it was known initially) and so it was important to
facts when speaking about the level of fear
give information, to tell personal stories, and to
that developed when a Polio epidemic broke
demonstrate the ways in which The Fellowship
out and dramatically over-played the difficulties
was supporting Polio-disabled people.
faced by people who contracted the disease and
Up until the advent of mass communications
were left disabled.
– television and, more-recently, the internet –
These booklets did not make easy reading and
people were more inclined to read publicity
it is, perhaps, a master-stroke of the staff of The
leaflets, and so The Fellowship published a
Fellowship in the 1950s that they added a certain
regular series of small pamphlets, which told the
popular interest to the grim reading by getting
story of The Fellowship or set out the challenges
a well-known celebrity to write the text or add
facing Polio-disabled people.
a foreword. Wilfred Pickles added his name to
The language used in these tracts from half a
‘The Story of the IPF’, published in the 1950s. The
century ago is, to say the least, not politicallywell-known broadcaster and actor had lost a son,
correct to 21st-century eyes, but it was the right
David, to Polio and had an obvious connection
to The Fellowship, which he also supported in
other ways by making personal appearances at
events. Dame Vera Lynn had been supportive of
The Fellowship from the early post-World War II
days and would regularly make appearances at
the National Christmas Party of The Fellowship
to cut the massive Christmas cake, often with a
symbolic military sabre.
Another, more enigmatic, author of Fellowship
publicity leaflets was John Arlott, the cricket
commentator, broadcaster, and wine writer.
It is not immediately obvious why Arlott should
have given his support to The Fellowship in the
1950s as, unlike Wilfred and Mabel Pickles, there
is no record of him being directly touched by
Polio. One of his cricketing heroes, Sir Donald
Bradman, had a son who contracted Polio in
1939 and it may have been this young man who
raised Arlott’s awareness of the needs of Poliodisabled people. Whatever the foundation of
his interest, there is no doubt that the support
given to The Fellowship by this well-known
and immensely charitable voice of cricket was
invaluable at a time when The Fellowship needed
to do all it could to promote the cause of Poliodisabled people.
Top: A Fellowship member is interviewed by
Wilfred Pickles. Above: Cricket commentator and
broadcaster John Arlott who wrote information
leaflets for The Fellowship.
Please help our collective memories to grow
history corner
Another medium open to The Fellowship in the
1950s was the cinema. At the time, ‘going to the
pictures’ was about the most regular activity for
many people. It was usual to have a main feature
film, a ‘B’ second feature, a Pathé Newsreel, and
an interval during which a lady would sell icecreams. In 1950 the newsreel would, in some
cinemas, be followed by a short film promoting
The British Polio Fellowship. ‘A Life to Be Lived’
was the first screen appearance for Jack Hedley,
the actor who is perhaps best-known as the
Do you have memories of meeting a well-known person at a Fellowship event, or do you have
photographs or leaflets from days gone by? The Fellowship Archive would love to have sight of
your memorabilia – please contact our Archivist: Barry North, at The Canon’s House, Stow Hill,
Newport, NP20 4EA, tel: 01633 212077, email: inbox@calshot-mail.co.uk uk and help our store of
memories to grow.
+
59
+
At the end of the film the lights
Senior British Officer in the BBC
in the cinema would come on
TV series Colditz, although he
and Fellowship members would
made many films and television
move through the audience
appearances. For his first screen
rattling collecting tins and
outing Hedley played a newly
distributing Fellowship leaflets.
Polio-disabled man struggling
to cope with life using a
The Fellowship Archive has an
wheelchair. A representative
original copy of ‘A Life to be
from The Fellowship calls to
Lived’ and copies of the leaflets
see him (and is not welcomed)
that carry the names of John
and persuades him to visit the
Arlott, Wilfred Pickles and others.
local branch meeting. Hedley’s
It is good that, so many years
character is determined to
ago, well-known people were
hate it all – but finds positive,
Comedian Benny Hill with
prepared to give of their time to
practical people who have
Frederic Morena, Founder
support Polio-disabled people
themselves been through
Secretary of The Fellowship.
– a tradition that continues
the struggles that he is
as today’s celebrities support
encountering. Hedley retrains, gets a job and
today’s Fellowship – see pages 7-17 for examples
discovers that although life is not a bowl of
of how our Ambassadors and celebrities have
roses for a disabled person, it is a lot better than been so effective in lending their support to
when he was first disabled.
British Polio Month. Thank you! n
history corner
Joan Silcocks MBE
60
It is not just famous people who
make excellent Ambassadors for
The Fellowship. As a young girl,
Joan Silcocks MBE had Polio and
lived and worked in the Christmas
card department at the Infantile
Paralysis Fellowship’s hostel and
workscheme in Newcastle (see
page 50). She was always grateful
for what The Fellowship had
done for her, and on retirement,
she started to ‘tin-rattle’ in the
city centre, raising many tens
of thousands of pounds for The
Fellowship and other charities.
Her dedication did not go
unnoticed. In 1997 Joan received
an MBE for her services to charity,
and in 2006 she was given the
freedom of the City of Newcastle.
She passed away in July and was
buried with her medals.
Your ad could be
here, reaching over
9,000 members, their
families and friends.
Contact Shirley
on 01953 451620
or email: shirley@
britishpolio.org.uk
WHEELCHAIR BREAKS IN THE LAKES,
near Keswick. Purpose-built self-catering
accommodation for two with additional family
accommodation available. Wheelover shower,
central heating, farm location with superb
views. Open all year. For colour brochure ring
017687 76380 or visit our website: www.
disabled-holiday.net
Cornwall - Nr Truro
advertising
TURKEY, sleepy seaside village of Akbuk, outside
seaside resort of Altinkum, 50 mins drive from
Bodrum airport. Two two-bed apartments
adjoined by balcony door. (Owner is a
Fellowship member and permanent wheelchair
user). Peaceful and relaxing. One apartment is
adjusted for wheelchair use with ramped access
and the other has five steps to access. Both are
level throughout. Will let together or separately.
Both apartments have two bed settees, so
maximum occupancy is six per apartment. 2
swimming pools and 2 children’s paddling
pools. Airport transfers arranged. Bookings
from £100 per week. Tel: 07946 510900, 01422
206106 or email: mail@malcolmkielty.co.uk for
photos, dvd and full details.
Two specially converted detached barns
on a family farm. Sleep 4 to 6 people.
Both fully wheelchair accessible.
Electric bed, air mattress, hoist and
rise/recline chairs available.
All bedrooms have ensuite wetrooms or
bathrooms. Care available.
For details
call 01726 883240 / 07762 173860
or visit www.treworgansfarm.co.uk
61
advertising
Are you an
orthotist? If
so, you could
be advertising
here. Contact
Shirley
on 01953
451620 for
details.
LACERTA REHABILITATION LTD CLINICAL/ ORTHOTIC SERVICE
Lacerta Rehabilitation is based at the University of Salford. We have state of the art
clinical, assessment and manufacturing facilities. Both our clinical and technical staff
are very experienced in all areas of orthotics and specialist footwear.
We hold regular
multi-disciplinary
team clinics and
have many years’
experience of Polio
and Post Polio
Syndrome orthotic
problems.
Fitting of Intelligent Knee
Brace
Specialist in lower limb bracing including:
•Intelligent free knee bracing
•Lightweight carbon fibre bracing
•Bespoke design bracing
We specialise in spinal
and lower limb bracing,
together with specialist
footwear. We offer:
•Full orthotic/footwear Assessment in Gait
Laboratory
assessment
•Report service
•Manufacture/fitting of orthotic equipment
Fabrication of Leg Brace
For more information/appointments please contact:
Mike Gilligan (Senior Orthotist/Manager)
Tel: 07771 696 804. Email mggilligan@hotmail.com
62
THE BRITISH POLIO FELLOWSHIP
National Officers
Chairman: Pam Jones
Vice Chairman: Linda Evers
Treasurer: Aidan Linton-Smith
Patrons
Dr Moira Anderson OBE
Michael Cassidy CBE
Joan Collins OBE
Hannah Gordon
Gordon Lumb
Dr Geoffrey Spencer OBE
Lionel Blair Sir Bobby Charlton CBE
Joe Fisher
Andy Love MP
Ambassadors
James Crisp, Tony Klinger, Julia Roberts,
Anne Wafula Strike and Gareth Williams
Publisher: The British Polio Fellowship
Editor: Laura McCaffrey, c/o Central Office
Design and production: Laura McCaffrey
Writer: Nicola Hill
Printing and distribution: Russell Press
The British Polio Fellowship is a registered charity
in England and Wales (1108335) and in Scotland
(SC038863). A company limited by guarantee and
registered in England and Wales No 5294321.
The Fellowship reserves the right to edit articles and
letters submitted. The views expressed in The Bulletin are
not necessarily those of The Fellowship.
Publication of an advertisement does not imply that
approval has been given to goods and services.
An invitation to join us. It costs just £25 to
become a life member of The Fellowship. As
a member you receive The Bulletin every two
months and can join your local Branch or
Group. If you would like to know more about
us before making up your mind please
contact Central Office (details above).
The Bulletin is the bi-monthly magazine of The British Polio Fellowship, distributed
free to members (circ. 9,000). Cost for non-members is £2.50 (annual subscription
£15.00). Please send cheque/postal orders to Central Office at above address.
Articles, letters, news items, photographs are welcome and will be published at the
discretion of the editor. The publishers, authors and printers cannot accept liability
for errors or omissions. Any transparencies, prints or artwork will be accepted at
owners risk. All rights reserved. No part of this publication may be reported in
any form without written permission of the copyright holder and publisher. The
Bulletin is printed on Magnomatt paper which meets and surpasses environmental
standards and is recyclable. Only pulp with a low environmental impact is used
and all integrated pulp is TCF (Totally Chlorine Free). Market pulp is either ECF
(Elementary Chlorine Free) or TCF.
Chief Executive
Ted Hill, MBE
0208 836 3671
tedhill@britishpolio.org.uk
Receptionist/Office Administrator
Sarah Mchugh
0800 018 0586
sarahmchugh@britishpolio.org.uk
Director of Operations & Services
Heike Kluever-Littlewood
0208 836 3682
heike@britishpolio.org.uk
Support Officer (Panels)
Natricia Duncan
0208 836 3677
natricia@britishpolio.org.uk
Support Services Team
Disability Benefits, Information & Advice
Membership: Enquiries, Joining
Branch & General Administration
0800 018 0586
infobenefits@britishpolio.org.uk
Holiday Programme
Grants & Information
Rosalind Evans
0208 836 3686
rosalindevans@britishpolio.org.uk
Marketing and Campaigns
Website/The Bulletin
Glenys Balchin
0208 836 3684
glenysbalchin@britishpolio.org.uk
Advertising
Shirley Russell
01953 451620
shirley@britishpolio.org.uk
Fundraising
Legacies and Events
Marianne Gkikas
0208 836 3679
marianneg@britishpolio.org.uk
Trusts
Diane Ware
0208 836 3678
diane@britishpolio.org.uk
Administration, In Memoriam, Donations and
Merchandise
Linda Davis
0208 836 3689
linda@britishpolio.org.uk
Finance
Dawn Grafetsberger
0208 836 3675
dawn@britishpolio.org.uk
Online Forum
Members & Guests
www.britishpolio.org.uk
The British Polio Fellowship, Eagle Point,
The Runway, South Ruislip, Middlesex HA4 6SE.
Freephone 0800 018 0586 supplied by MCI Worldcom
Fax: 020 8842 0555
Email: info@britishpolio.org.uk
Website: www.britishpolio.org.uk
Contacts
63
I feel proud to have achieved
my dream
This is the page for readers to share their life stories or memories. If you would like to tell
your story, please send details (around 400 words by email if possible) and a good quality
photo to the Editor, Laura McCaffrey, at the address on page 63. This issue, Stephen
Edwards explains how he achieved his boyhood ambition of becoming a police officer.
M
y mother and father were
in Nigeria working, she as
a nurse and he as a Police
Superintendent at Lagos Airport. I
was born in Lagos and at the age
of two contracted Polio and was
paralysed from the waist down.
my way
I was flown home to England where I
received treatment that managed to
get my left leg working but not my
right – this took longer and damaged
the muscle, leaving me with a leg
that was two and a half inches short.
I do remember staying in England and at the
age of six I was packed off to St Hugh’s Boarding
School in Woodhall Spa with a built-up shoe and
my right leg in a calliper. Children are so cruel
and I can honestly say that I hated every minute
of it and ran away from the school whenever I
got the opportunity.
Life carried on and my next recollections are of
being at junior school and then grammar school
where bullying was still a problem, but then I
took up Judo and the bullying stopped.
I was starting to get skeletal problems, mainly
with my left knee, which was taking a bit of
a hammering. But it was because of this that
a doctor saw the weakness and difference
in size and referred me to Doctor Annan
in Huddersfield, who was pioneering leglengthening surgery. So at the age of 18 in
1970 I had my leg stretched two inches, which
put me on an even keel – ish. That was quite
an experience and I nearly lost my leg due to
infection. As soon as I was out of plaster I tried
64
to kickstart my 650cc motorcycle
and snapped my right leg! Not to
be recommended. It repaired and
as far as I was concerned this was
a game changer and spurred me
on to qualify in competition for
my black belt at Judo and become
a butcher – all the things that
disabled people were not thought
to be able to do.
But since being a little boy all I had
wanted to be was a policeman, like
my father and grandfather before him. Everyone
said it could not be done.
I joined the Special Constabulary, went through
three applications, medicals and a lot of
heartache and disappointment to reach 13
November 1978, when I reported for duty as a
police constable for the Humberside Police.
Apart from the birth of my three children and
now numerous grandchildren, getting married
etc, this was one of the best times. I was so
proud and don’t know how I did it. Credit must
go to Humberside Police for taking the decision
to employ a disabled police officer.
I managed 22 years before getting injured in a
fight. My right ankle had taken too much over
the years and that was that. I spent the next
six years running the family businesses and
then my wife took over and I went back to the
Humberside Police where I am an investigator
working for the CID.
Polio was the beginning and not the end, but I
know there are people so much worse than me
and I am one of the lucky ones. n

theBulletin Sept-Oct 2013 - British Polio Fellowship

Transcription

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